Just to let you know...

Cycle 1 completed and Cycle 2 started

2012-01-29T16:21:00.001Z

with minimum side effects reported fantastic. My bloods have not quite recovered but they are no worse then in 2009 however I am going to start taking Vitamin C after reading an interesting blog last week Mums not having chemo. Forgot to get some yesterday and really can't be bothered to get dressed today!

I have had a very exciting week with last minute arrangements to go to the NTA's at the O2 in London. Thanks Kathryn for inviting me this time and I'm glad you enjoyed it as much I did. Sadly I broke my camera and we were just having such a great time we only took a few photo's. I showed how committed I am to my lifestyle changes, as being invited to the post awards party :-) with a FREE BAR I only had 2 glasses of champagne and drank water inbetween!! I have been laughing at the thought of Colin and David turning in their graves at that one!

I am having a relaxing weekend at home after the weeks excitement, yesterday I met up with Lesley P who I have met through the the BCC forums and we enjoyed a lovely lunch at Zizzi's. Today I am not even going to get dressed!

Before I go off and cook some dinner Congratulations to Sarah and Laurence on the safe arrival of a baby girl who as yet has no name she looks gorgeous !

Another fantastic result!

2012-01-10T21:48:00.000Z

As my scan last week was to have a benchmark before starting chemo, I was not due to discuss the outcome with my Oncologist, however with my fantastic blood test results, which I put down to no drugs, Dandelion tea, Milk Thistle, Apricot kernels, Flaxseed and Blueberry punch, I couldn't resist asking for a copy to see if there was a similar trend and ...

"In the abdomen there has been no increase in size of the liver metastatic deposits and no new lesions are seen."

It is an understatement to say I am feeling ecstatically pleased with this result. Why am I on chemo again? Realistically I will continue with the 6 cycles I am booked for and reassess when I have my next scan in 3 months time as with the chemo and lifestyle changes I have made and others in the pipeline, I feel extremely positive about the potential outcomes.

Talking about chemo so far so good with no side effects being noted!!

Chemo Cycle 1 Day 4 so far so good

2012-01-07T09:54:00.001Z

I don''t feel any different whoo hoo! Even managed a small celebration in the Plough after work on Friday. The Xelda Queen and Princesses who blog in the Breast Cancer Care forums have proved to be such a valuable and inspirational resource my anxiety diminished after keeping down the first 2 doses.

One of the tips I picked up on Tuesday was to use Coconut oil to moisturise your skin (no toxins or additives). I am already using that on my lips instead of Vaseline and it is doing the job. I will look into using it on the rest of my face next. It makes you feel better know you are using a natural product.

I have a weekend to potter about and I am having a cooking session and a clear out. Have a good one everyone xx

Busy couple of days and have started Chemo

2012-01-04T22:33:00.000Z

I had my CT scan yesterday, no issue putting the cannula in.   Took the girls to Bournemouth and they had a fab time.  I was fortunate to arrange a consultation with Barbara Cox who runs Nutrichef at the last minute whilst I was in the area. This was extremely educational and I will share what I have learnt from her when I have put my plan together.

This morning I went to have my bloods taken. Three people and 4 attempts later I was feeling queasy. All I could think of was I could really do with a packet of Tooty fruities. As I hadn't got my purse on me I remembered I had brought in the left over Christmas cake to share at work and that hit the spot.

I went back this afternoon to meet with the Pharmacist and I was there for an hour going through the medication and the possible side effects and we discussed the ways to manage them. I am taking 2100mg of Capecitabine twice a day shortly after food.  1 cycle is 2 weeks of the daily dosage then 1 week off and I am on 6 cycles initially.

Wasn't a brilliant day with one thing and another and when I got home it got worse with Holly just being a typical teenager which I didn't ignore. All calm now, first dose taken and they have stayed down. I was told to take my first dose in the evening rather then the morning as for some reason this minimises the side effects.

I feel prepared but still anxious. The great news about today was that my blood test results were brilliant with only 1 area of concern instead of 4 in my liver functions.   Can't wait to see my scan report.

Well off to bed now will keep you posted ...
PS Wend that was the first album I ever bought!

Seasons Greetings

2011-12-30T13:43:00.000Z

and hope everyone has had a lovely Christmas. Our plans for both weekends all changed at the last minute. Never a dull moment!

Christmas because Holly caught a bug so we were banned from going to Worcester. Gutted as we all were, we know it was the right decision. Then I had no one to go to the pub with to toast Colin on his anniversary on the Friday. Holly was adamant she didn't want to come, which I am sure will change in a few years time, so I kidnapped Donna for an hour. It was a really odd feeling I had at one point as I didn't think I would get there. It only cleared up when we ordered our mulled cider. Thanks Donna and I am pleased you enjoyed your first mulled cider x

Thankfully the bug cleared up and I didn't catch it so Holly and I still went to Devon and had a wonderful time. Big Thank you to Karen Chloe and Teri xxxx

New Year has changed as the ferry's to Jersey have been cancelled due to the weather conditions so we are staying in a lovely cottage in Bude instead. Bonus - Indoor heated swimming pool and Karen is popping over for the day :-)

Tuesday, after my CT scan at 8:30, I'm taking Holly, Mel and 2 other of Holly's friends, Chloe and Eloise to Bournemouth for a One Direction concert. Excited doesn't cover it for Holly. I keep imagining how excited I would have been if I was their age and going to see Donny Osmond, however I am considering using headphones :-).

Happy New Year everyone and here's to a gripping January xxx

Some funnies that have made me smile!

2011-12-17T09:45:00.000Z

I am always laughing and smiling at one thing or another and thought I would share some with you.

Halloween I was running late getting home as Sarah S was calling in for tea on the way home. We had our pumpkin out and Holly was off out with Mel scaring people. I answered the door to a corpse bride and a very scary Alice. Their accompanying adult went on to say they were expecting me to get dressed up like I had 2 years ago as I had made them cry and they had been seeking revenge since. We all laughed at the memory and I explained I was a week out of hospital and had little hair. Tracie had done my make up so I was the scariest one opening the door. I do remember making the younger ones step back and go to their parents and these girls had been waiting to seek revenge since. Been on a hunt but did find the photo. I'm the one on the right.

When I was at the Beacon Centre next I got chatting to a lady in the second waiting room who has just started chemo and she was discussing the operation she was due to have when this finished and she wanted to know amongst other things what it felt like afterwards. I mentioned my blog as a resource for her and she asked me if I knew one of her friends that was a nurse. I didn't and we carried on talking and another lady that had arrived joined in. It came up that I worked for the Trust and she asked me if I had a young daughter and it then transpired that this friend had mentioned me and my blog to her as I had met the friend when I was having treatment in 2009. She wanted to know if I was still using my wonderful sense of humour to keep me going through all this rubbish. We all laughed and I thought what a lovely way to be remembered.

Finally my lovely daughter sprung a birthday surprise inspired by initially thinking I was going to be 50. I was so nervous coming home to find the house empty with a note on the door telling me to get ready, hair and make up as taxi was picking me up at 6:45 I had no idea what was going on. Thanks to those who helped her and turned up it was lovely. I have said I will help her next year so she can hire a hall and I have suggested we turn it into a fundraiser so watch this space....

I did have another planned joint birthday celebration the following weekend in Worcester and love the next picture cos it's not a bad one of me.

I am enjoying the preparations for Christmas as we are going to be in North Devon with Karen, Chloe, Teri, Rachel, Laura and Holly. Not sure if Karen is allowed to go sledging down sand dunes after last year when her knee found the rock but we might still have a go.

Well I'm off to finish my cards and make another list. Have a good weekend everyone xxx

Date for Chemo set

2011-12-06T13:14:00.002Z

for the 4th January 2012. The hormone tablets are not working and my liver fuctions have got worse. 2 weeks ago I was saying I would be gutted if there is no improvement in my liver functions with the change in my diet, however reflecting over this last weekend I realised that what I am doing is never going to shrink the tumours but the fact I feel so much better I will continue regardless.

My Oncologist advised further to the Macmillon fact sheet given to me at my last appointment, that the worst sideffects they see are the skin drying on the hands and feet and the taste in the mouth being very unpleasant and Diarrhoea. Since the last meeting I have been finding the forums in the Breast Cancer Care extremely resourceful so I asked about the Udder cream and mouth wash and they hold stock at the hospital. Being prepared is half the battle.

I am dissapppointed with this news and I have to give it a try.
There are other drugs if the Capecitabine doesn't work. I will have to take tablets for 2 weeks then a week off. The success of this chemo will be measured by blood tests and I will have another CT scan before I start. There are women who have been on this chemo for 8 years and enjoy a good quality of life!

The good news in all of this is that I will be drug free for 4 whole weeks whoo hoo!

I did sneak into the League of Friends shop on the way back and bought a small pack of tooty friuties, mini cheddars and a small bar of dairy milk. Sshh don't tell Holly. xxx

What a difference a few days makes. Everything seems brighter

2011-11-10T21:19:00.000Z

after browsing forums on the Breast Cancer Care website and a bit of retail therapy!

In the Breast Cancer Care community, the ladies who are on Xeloda (the short name of the drug that my health care team want me to start), provide a valuable resource. I am reading how they manange the side effects and the different treatments being used. Reassuringly there is a lady who has been on this drug for 8 years and whilst I know everyone reacts differently, that turned it around for me!

I have had my appointments through, Oncology 6th Dec and 20th Dec for my referral to have the sigmoid skin tag removed.

Since I got back from the Penny Brohn centre, I drink loads of fruit tea and hot water with lemon. I am now also drinking Dandelion tea and taking a RDA of Milk Thistle. This will help my liver functions that are being impacted by toxins from drugs, food and drink.

In my second week of detox I have lost 2lb in weight and I am feeling quite bright and positive all things considered and long may it continue! Birthday binges and Christmas coming up oh well it's all about getting the right balance :-)

Have a good weekend everyone xxx

Not a great report from my CT scan

2011-11-01T23:00:00.000Z

for my liver it states "They appear slightly larger then on the previous CT. The largest lesion is in segment 5/8 and measures 26mm (previously 19)mm. New lesions in segment 6 are also noted." My liver functions are not great either. The good news is there is no free fluid roaming around my belly!

My oncoligist's answer to this is to place me on chemo - Capecitabine to be taken orally. I get the "lets try this whilst your relatively healthy" however I made it clear that at there is no way I am taking Chemo until my skin tag guarding my bowel entrance has been removed. I remember from the last time the impact of chemo on my bowels very well! I had some questions which the Dr didn't know the answer to and he said if I could wait I could see my usual oncologist which of course I did and threw more questions at him. The FireFox trial (combination of radiotherpy and chemo for advanced bowel cancer in liver) I had already emailed to him, would not be appropiate for me as my cancer is like seeds scattered throughout my liver. He wasn't enthused over my suggestion about me having Oxygen therapy. I said that due to the side effects of Arimidex (generic tablets Nastrosa) could I try another Aromatase inhibitor such as Exomestane. I mentioned being unable to loose weight and yeah thats my problem to sort and so I will!

So the plan is to use Exomestane straight away then have my liver functions checked in a months time. Meanwile back to the GP to get my sigmoid skin tag removed. I'm going to formulate a plan to loose weight and be healthier all round and do some more research on oxygen therapy using the Penny Brohn centre for further advise and support on all the above ...
On telling Holly, her only concern at this time is if the chemo results in me loosing my hair! ummm...

My stay at the Penny Brohn Cancer Centre

2011-11-01T20:48:00.000Z

in Bristol has been an amazing experience where I attended their Approach residential course which follows on from their Living Well course I attended back in July. It continues with their meditation techniques using imagery and sound, nutrition and health advice and some healing techniques. Their restaurant produced tasty freshly cooked foods following their own ethos of using organic and healthier options. There was no coffee or alcohol and only fruit teas, water and other organic options to drink. Fresh Smoothies, fruit and nuts for snacks. I never went hungry. Again I have met some wonderful people on this course and after one to one consultations with Dr's and nutritionists I feel I have more options to explore.

One of the highlights of this retreat (as I now call it) was meeting Pat Pilkington one of the co founders of this centre. Being a vibrant, energetic 83 year old, her story was inspirational.

I also kept thinking how Colin and Sandra would have benefited from this kind of support to help with the stress associated with what they went through and lo and behold Colin popped into my dream whilst I was there. He had shrunk and yes I was taller then him and he was trying to climb up something. I asked him what had happened and he said his back was getting smaller. I mentioned this the following day to one of the therapists including my interpretation was that he was letting me know what I have to look forward to, (typical as that I am vertically challenged anyway) and she mentioned another interpretation being that he is telling me he is still supporting me. Something to do with the back being mentioned in the dream.

I intend to continue using this centre and look forward to a 3 day retreat next year. I can also have 15 minute phone consultations with the Drs and Nutritionists there which I think it is always good to have a 2nd opinion.

I'm feeling anxious about Tuesday when I get the results of last weeks scan and hoping the tablets are still working and the dietry changes I have made are enough. Fingers crossed...

Long time no blog...

2011-10-23T12:29:00.000+01:00

Have spent some time changing the design of it tho and just have some tweaking left to do when I can figure it out.

I have been quite busy the last 3 months. In summary, work, super market, home. Breaks by the sea include 5 days in Dorset with Gail Jennifer and Lennon, a week in North Devon with Rachel and Laura. First time ever a bank holiday weekend in ND and not camping as was house, dog, cat and hot tub sitting for Karen. A lovely weekend in Tenby with friends. Enjoyed that part of my life's journey !!! (you had to be there to get that one). Blue bell (car) broke, laptop broke, both now fixed. A couple of nights out in the town, both Worcs and Taunton. Went to see Dirty Dancing at the Bristol Hippodrome with what now seems to be, the obligatory exciting train journey home! Holly started year 9 at school, Careers fairs, having sleepovers here, trips to cinema and Gem and Rock show all normal stuff. Even got into watching and enjoying the Rugby World Cup! (Holly not into it yet).

In getting my affairs in order a huge piece of work has now been completed in Worcester. Many thanks to everyone that helped and won't single any one out. I am just extremely grateful knowing I couldn't had done it on my own and feel so relieved that it is all sorted. That just leaves my pensions to sort out now. I didn't realise I had so many, making decisions difficult.

I have provided feedback to North Bristol Trust and Taunton & Somerset Foundation Trust over my patient experience with them this year. Bristol have responded with apologies for the lost referral and delayed histopatholgy results and confirmed the changes and actions that have been set to ensure this doesn't happen to another patient. That made me feel that it was worth the effort of writing to them and inspired me to finish off the report for Taunton and sent that off and as yet have not heard of any outcomes.

Had my CT scan last Tuesday, and cannula was inserted on the 2nd attempt. I really dislike needles and my vein's keep trying to hide from them as well! I will have the results reported back to me at my Oncology appointment Tuesday 1st November. I have made suttle changes in my diet but have not incurred any weight loss which I know will help even more. I am at the Penny Brohn Cancer centre next week for 3 days so I hope to come back all inspired and ready to do battle before the birthday and Christmas binging sessions arrive.

Overall I am doing good. My sleeping pattern has improved, breaths huge sigh of relief. I have let my hair grow a bit and it feels much stronger. Time for a change and get a cut now. I need to improve my level of fitness still. I suppose I should get the dust off my swimsuit and make the effort....

The Penny Brohn Cancer Centre

2011-07-17T09:55:00.002+01:00

based in Bristol came to Taunton to hold their 3 day course called Living Well Beyond and with Cancer. This was in the Education Academy at St Margaret's Hospice and I was lucky enough to get a place on it. Some of the topics covered were, Healthy Eating, with cookery demonstrations, Exercise, Spiritual Health, Finance Welfare, Mindfulness, Selfhelp techniques for relaxation, meditation and Imagery. I found the course extremely beneficial and I managed to put on my pause button and think about what matters to me, what do I want to do about and where do I want to be. We were encouraged to use the SMART technique , Specific, Measurable, Achievable, Realistic and Timely when setting some personal goals to enhance our lives. I have made 3 very realistic personal goals with exercise, eating, and meditation and I will keep you posted :-)
If you want to find out more about what this centre can do here's the link to their website. http://www.pennybrohncancercare.org/.

I met amazing people on this course, and through sharing our experiences, I felt emotionally drained, however it did me also make realise how lucky I am. I did chuckle though when told how atheltic I must have been when I used to go swimming and got up to 50 lengths. Me atheltic :-)

Pressing my play button and back to reality, Holly came home with a fantastic report with room for targets and goals next year. Proud parent mode boosted for another week!!

Well done Holly, Karen and Teri

2011-07-10T22:54:00.001+01:00

Holly for completing her first ever Race for Life in 36 minutes, followed by Teri at 42 minutes 10 secs then Karen at 42 min 14 seconds. Also collectively so far they have raised £470. Considering Holly admits now to having done no training I feel so proud of her and I'm not allowed to call her a couch potatoe any more.

It was a lovely atmosphere at the site. I felt really humbled reading the messages on people's back and I felt very lucky and my challenge was not to cry and I achieved it but only just! Also just a tad inspired so I'll put it on my bucket list for next year and all being well I should be able to walk it. Holly is inspired to train for next year's attempt and we're going to cheer the ladies taking part in Taunton's Race for Life on Sunday.

I'm sure we're both going to get a good night sleep tonight. Yes I found it hard being on my feet all morning! Big thank you to Teri and Karen as this would not have happened without your enthusiasm and if anyone would still like to sponsor them all their links are in the Race for Life tab at the top of the page.
Proud parent signing off, night all xx

3 month review is promising

2011-07-05T22:45:00.000+01:00

as the CT scan report from last Monday confirms that "No definite new leisons" and "most of the leisons have shown a slight reduction in size" They have not reported on my Uterus and my oncologist is going to chase that and re reading the report at home I can see the words "I think" which isn't good enough. This confirms that the drugs are working but I am disappointed that I have to point out, a week later, inaccuracies in the report. However I do feel I can celebrate or maybe breath a sigh of relief. Umm where's the bottle opener?

We had a discussion around my reasons for wanting to have a hysterectomy and I will wait for the full report and do a bit more research. It has been agreed that this can be emailed to me, albeit begrudgingly. It has been quite an emotional build up to today's meeting but I will to get used to it. My next CT Scan will be in 3 months time as an ultra sound scan will only concentrate on my liver whereas the CT scan covers a larger area andcan spot changes in bone density.

Apart from a summer cold I just feel tired. I am going to start swimming again soon so Anne get the dust off your swimming costume!

Well I made to the Xray department on time

2011-06-27T16:39:00.000+01:00

but am not feeling well so drinking the water required wasn't too good and eventually the inevitable happended. I threw up. Thankfully I made it to the bathroom and maintained bladder control. I'm not feeling great with acute cold symptoms, got upset as the first thought in my head now was that I would be unable to have my scan. Thankfully they were able to and got a clear image. When done I came home and straight to bed with some honey lemon and paracetamol after phoning work to let them know I wouldn't be in.

I've finally had a letter from the Gynae team. This included an apology for the misunderstanding that occurred and details I have been waiting for since my op 3 weeks ago. He is not concerned about my bulky uterus and would not pursue further investigations for what he considers is a very common finding in a lot of women with no subsequent implications. I've yet to be convinced about that. I will be interested to see if there has been any change in the measurements from today's scan which I will find out next Tuesday.

I have had a busy weekend including meeting up with a fellow blogger Jill who is over from Canada on holiday with her husband Jean. Thank you both for a lovely afternoon in Bath I felt privileged to be with you both and it felt like we'd known each other for years. My photo's didn't come out as well as yours so I clearly need more practice....

Another long wait for test results

2011-06-17T14:30:00.001+01:00

but now they are in I have more questions. It has been confirmed that my Ovaries and Fallopian tubes contained Lobular Breast Cancer. My womb has been checked and it is unlikely to be cancerous. My first question to that is the Gynae Surgeon told me he suspected I had Endometriosis so how can he be sure about my womb.

I have another CT scan booked for the 27th June and the results to be reported back to me on the 5th July.

It has been a horrible week waiting for these results and that on it's own hasn't helped. It could have been worse as if this was Ovarian cancer a whole new treatment plan would have had to be discusssed so there is a plus side.

Looking forward to a weekend out of cancer land and hopefully back to work Monday. Have a good one everyone. xxx

Recovering nicely

2011-06-10T10:40:00.000+01:00

at home, doing as I am told and parked in front of TV or in bed.

My operation went well and having had 4 operations in less then 2 years I was making lots of comparisons between Bristol and Taunton. I was anxious because of what happened earlier in the year when I couldn't get the help that I needed and I know this was a different department and I was soon put at ease.

Having been slightly distracted the weekend I wasn't as organised as I usually was, had no plan B for responsible adult staying over and didn't hand out telephone numbers. Thank you Tracey N for organising everything when it became clear Alice was not well enough to sleep over and Jill N you were so well behaved so you can sleepover again! And of course to the Bebbs, Nige for getting me there on time and Anne for checking me and Holly were organised and updating my blog xxx

Despite being moved to 2nd on the list I didn't get to taken down till 1pm and was in the ward from about 5pm. I was still out of it and missed telling Lesley V that I would be later then 6pm coming out. The nurses were treating me as if I was staying overnight but I was adamant I was going home. My usual post op vomiting episode was contained and after keeping down biscuits, coffee and a trip to the bathroom I was given the green light. Have no idea why Anne wouldn't believe me but the Nurse assured her and that she wanted me out! Jill picked me up and was home around 9:30pm.

Each day, despite feeling tired and my belly feeling delicate, I also feel improvement. I'm also smiling at a memory I hold when I was pregnant all those years ago, out with some friends in pub in Bromsgrove, Andrew D (AKA Plug) saying to me "Your classed as safe Totty now" :-).

My Surgeon said I was a bit of a challenge as my ovaries were quite sticky. Well they have been there a long time! He didn't phone yesterday with the results to confirm his opinion that it was Endometriosis that the CT scan had showed up. I have called today and his secretary called back to advise the test results are not available but he would call on Monday when he will be back in the office. (Friday and golf come to mind).

Have a lovely weekend everyone. Good luck for my lovely niece Laura and the rest of the Worcester peeps who are doing the Race for Life on Sunday. I will cheer you on from my sofa! For those who want to sponsor Laura, her link is on my Race for Life 2011 page and thanks in advance xxx

Signing in for Sue

2011-06-07T20:26:00.003+01:00

Just a quick note to let you know Nigel dropped Sue off this morning at Musgrove ready for her op. She was there by 7.15am in plenty of time and was originally scheduled for first on the list. However as is often the case, for whatever unknown reasons, she slipped down the list as the morning wore on.

She finally managed to phone me just after 7pm sounding still somewhat groggy and as far as she could tell it had not been decided then whether she should come home the same day or be kept in overnight tonight - I think there may be some interesting discussions between her and the staff :)

Another friend will contact the ward to see if she can collect her, bring her home and stay with her overnight at around 9pm. Holly has been spending the evening with another good friend so everything on the home front is ticking over nicely

I have no real details of today's events at the hospital except to say she has come through the op ok

No doubt there will be more info forthcoming in the morning from the horse's mouth so to speak but I'm sure that she's heartened by everyone's good wishes

Anne (on Sue's behalf)

PS -

Just spoken to Sue again at 8.50pm and after having half a cup of tea, some toast and a toilet visit they have now told her she can come home so Jill is heading off to collect her as I type.

I must admit that as the ward had just asked Jill to ring back at 10.30pm to see if she could leave I did insist on checking with the nurse as I know Sue can be a bit of an escapologist but it is all legit and she's en route having been assured by the medics that they have managed to remove everything they went in for.

Of course the main challenge now begins - convincing her to rest and recuperate!!!

Twas the night before my Oophorectomy and my check list all ticked

2011-06-06T23:19:00.000+01:00

Nige B taking me to hospital for 7:30am. OK I will be ready for 7am :-(
Lesley V my friend who works on site is bringing me home. iPod charged and book chosen. Alice G staying with Holly and myself Tuesday evening. Chinese order made for tea :-) Up todate with jobs at home. Have got some TV to catch up on as well as a couple of books I want to read. There is no excuse I will rest.!!

Hola - Back safe and sound

2011-05-24T15:23:00.000+01:00

and very tired. We have both had a wonderful time. Rather then post over 750 pictures I have selected 68 just to give you a flavour of our holiday. The highlight for both us was Gibraltar where we went Dolphin watching and they all came out to play. Pat M Gilbraltar is not that far xx
Sue and Holly's Trip May 2011
Dolphin fans
Dolphin Watching

Thanks once again everyone xx

PS. Email me if you have problems with the links and I can email the pdf's files out.

Holiday time - THANK YOU !!!

2011-05-07T07:56:00.000+01:00

I'm almost packed and got a whole morning in front of me to get ready. I feel I can get excited now after the first monitoring of my treatment being so positive. I will pass Dave's milestone of 6 weeks next Tuesday, never doubted that I wouldn't, and on the way to beat Colin's :-).

We're off to Majorca for 3 days staying in the Palm Nova resort before getting on a boat to Tangiers, Casablanca, Gilbralter, Almeria, Cartegena and back to Palma in Marjorca. I have never been on a criuse before but in a frightened state of mind when booking this I was comforted that there is a Dr on board ship and getting to lots of different places without any effort on my part. Just got to watch the time when out in the ports for getting back to the ship :-).

We would not be going on this holiday had it not been for the A team and my wonderful family and friends. All I can do to thank you all is to enjoy myself, make some lovely memories for Holly and myself and take lot's of pictures and share it all when I get back. I have treated myself to a new camera, thanks Chloe for the inspiration over the Easter break. I may turn this into a new hobby who knows watch this space...

A promising start 5 Weeks on!!

2011-05-03T21:28:00.000+01:00

On Friday I went with Anne to meet the Gynaecologist at MPH. After a short discussion the consultant went through the risks and benefits of having an Oophorectomy (removal of my Ovaries). As I already knew my liver functions had improved from the blood test I had done last Wednesday (had a print done for me Thursday at my GP practice when I had my implant inserted), I feel confident that my Liver will stand up to the drugs I will need for this operation and I have agreed to have this done. Operation is now booked for Tuesday 7th June and all being well I shall only be in for a day then rest for 1 week, 2 weeks max. The benefits will be that we will know if they are secondary BC, new Ovarian Primary or clear. Also will not need to have an implant every 4 weeks to turn them off. Yey one less injection!
The meeting with the Oncologist today was with same consultant who told me in July 2010 that they wouldn't offer scans to patients on their check ups and would prefer to wait until symptoms present themselves. He still stands by his decision as allegedly there is no evidence that the survival rates improve with earlier diagnosis for Secondary cancers. Well I feel that this needs to be addressed so will add that to my report that I am preparing for T&S Trust.
As mentioned earlier my blood tests revealed that my liver functions have improved telling me the Arimidex is working - Breath out a huge sigh of relief. The side effects have not been too noticeable either so fingers crossed this is maintained.
My bone scan results were described as Normal reminding the reader that hormone suppressive therapy can result in false negative bone scans.
All in all a good week with 5 weeks of treatment behind me which has produced positive results. I feel more positive and despite getting my affairs in order I feel that I can also make plans for the future.
I had my first day back at work today, another step in the right direction - bringing back some normality...

Happy Easter

2011-04-23T22:42:00.000+01:00

I have had a lovely but busy few weeks with visitors, appointments and getting my jobs done. As mentioned in my previous update, I have set up an email account that the A Team will manage. They will respond with details of how you can make a donation or pass on any offer of help (as I generally say no thanks) Also they will be able to view my calendar and ensure that I don't go on my own to my appointments. sue.just2letuknow@gmail.com .

I have also booked our holiday, THANK YOU !! We are flying out to Majorca for 3 days on the 7th May then cruising to Tangier, Casablanca, Gibraltar, Almeria, Cartagena then back to Palma. I am still trying to sort out our travel Insurance as the premiums are silly prices but have managed to get 2 reasonable quotes with one even being under £200. I've then got to book the hotel for the 3 days that we are in Majorca.

Had a bit of a bizarre day on Wednesday. I took Holly to her dad's and after the train fare was more then I would spend in petrol I decided at the last minute to go in the car. I got back in time for my 11am appointment with our local vicar which was productive and worthwhile. My friends Smudge and Jayne had arrived and I met them for lunch and went to our local garden centre for a mooch. Now for the bizarre bit. On the way out, a chap ended up chatting to us as Smudge had his Led Zepplin t-shirt on and it turned out all 3 of us were at Knebworth festival in 1979. During the course of the conversation a song came up that this chap had played at a funeral and I went oohh that's an idea. Then before you know it we are being preached to as he was also a minister and he offers me some christian healing prayer in the carpark. I accepted his gift with the blessing it was being delivered with so we shall wait and see.

I have a busy fortnight ahead as well. Next week I have the all important blood test to check the liver functions, hormone injection (blimey has it really been 4 weeks), an appointment with the Gynae team (re swollen ovary) and reflexology session. The following week I start a phased return to work :-), an Oncology appointment where I shall have the results of my bone scan that I had last week and the blood test reported back to me. Then we're off on holiday :-).

This Easter weekend Rachel and myself are at Karen's in Braunton having a lovely time being pampered with a pedicure, afternoon snoozes, walks on the beach and dips in the Jacuzzi. Hope everyone is having as nice a time as we are xxx

Wide Awake Rehersal Thank you

2011-04-11T20:34:00.000+01:00

and it was absolutely fantastic. Special thanks for Donna and Shannon for housework duty with Holly at mine, Lynne and James for opening up their house for the Saturday and Sunday gatherings and Nigel and Anne for their help with this and loans of various chairs, tables and marquee. It goes without saying thank you for everyone that turned up from all over it was lovely to see you all I'm sure I got round to speaking to everyone. The sun stayed out as well and I felt truly blessed. I will be revamping this blog and post some pictures from this weekend on a picture gallery page so watch this space....

Feeling extreeeemly Lucky

2011-04-08T08:32:00.001+01:00

I know it sounds daft but I do and here's one of the reasons why.
For those that know me well, you will agree I struggle asking for and accepting help. I prefer to give it. Now I know how everyone feels who love and care about me as I felt the same way with my brothers David and Colin (Happy Birthday to Colin btw for last Tuesday. Did have a pint for you). I wanted to help them but all I could do was lend an ear and give them my time. I felt it all inadequate as I couldn't remove their cancer and give them their life back. David didn't have any chance and when I think what Colin had to deal with in the 3 years he had, even having a villa at his disposal in Cyprus he didn't make it there. Every time he thought of a suitable time something came up. We did have 10 days camping August 2009 together and I know the kids remember him best with the photo we have of him in wetsuit, hat, whistle, body board, Strongbow in hand and a huge cheesy grin. The ill, grumpy Colin is forgotton. Thinking of this helps me embrace the wonderful gift that the A team have instigated for me and Holly and makes me feel extremly lucky. Thank you to everyone seems wholly inadequate (I really should dig out my dictionary umm will put it on bucket list).
I have had a busy but productive week. Working my way down my task list, not much more to do. People call me inspirational but I receieved a truely inspirational email from someone who doesn't know me after being drawn to a comment I left on a FB blog for This Morning (TV Show that some lovely people get invited on :-) ) In summary this lady, Claire from Ipswich shared her story with me and realy gave me hope and so cheered me up, not that I need cheering up. She was diagnosed in 2006 with Metastatic Breast Cancer spread to Liver and Bones and given 2 weeks left to live. At the time she had 3 young children under 8. The positive message to never give up hope and it's not our turn yet stood out. Thank you Claire. Despite being positve about all of this your email has not only turned this around for me but for my family as well.
Well it's a busy weekened here in Taunton and the sun is out as well. I am nervous about it all but so looking forward to spending time with family and friends sharing memories and making a bucket list. Thanks to everyone including those that can't make it who have emailed theirs in. My brother Kevin says this all feels a bit morbid but then really looking forward to the get together. And thanks to the Taxi driver who refused to take my fare on Tuesday after I pointed out that I wasn't drunk just recovering after operations making it difficult for me to get into big vehicles and that I may need the wheel chair space in his taxi. I put the fare in the Bucket for the fund thank you.
Have a lovely weekend everyone and hope is a good one with the sun shining on all of us xxx

News is slowly sinking in

2011-04-02T10:01:00.000+01:00

and having talked to Holly every day about one aspect or another she's got the idea and in between the "Don't let Auntie Rachel sneak out the laptop" and "Does that mean I can have your camera?" we have had the tears. Since Tuesday I have cried myself to sleep, I feel anxiety, I feel angry, and also overwhelmed with what people want to do for me and Holly. Yes one of the items on my to do list is let them! I have also been talking to them upstairs and I know now how David and Colin felt. This is the card I have been dealt with, the 3rd member of my family facing this in 4 years. I thought yesterday this is 3rd time lucky. Not lucky enough for the Cancer to disappear, but just lucky urrrmmm.  I know I will beat David's record and I wonder if I can beat Colin's record!!  Sibling rivalry still going on and I'm going to beat both of them Grammar school boys :-)  he he he
Next week all my affairs will be sorted and put in order then we can forget about all that and continue with a bit of normality and whatever Holly and I want to do. I want to have a Wide Wake party so we are having a wide wake rehearsal here in Taunton weekend 9/10th April. We are just getting together, share memories and create a bucket list. Bring photos as well!! Email me if you would like to come even if it is just to say hello.  Be warned though Holly will be in charge of the video camera! Also for those that can't make it we can arrange a skype session.
Yes I am being managed. My will has been on my to do list since before I got diagnosed in 2009. With huge thanks (that word appears so inadequate.  Note to myself: find another word) to Anne Nige, Lynne and James for giving me a task list as long as my arm to complete at various points next week. (I did 2 items yesterday:-))
Something else I am just overwhelmed about that the A team told me on Thursday night.   James and Anne are opening a bank account on Monday, I think it is going to be called the "Sue Davies Foundation Trust" or something. I really can't remember I was a bit emotional at that point. There's already a large deposit to make. I don't even know who to thank! This is for Holly and I to have a holiday to be taken next month whilst I'm fit enough . We just need to let James know where we have chosen to go and then pack our cases. Holly's smiley face asked "Anywhere?" and then came "The Caribbean"  There's me thinking Ireland.  I will update this website with those details and also for anyone who wishes to make a contribution can do so through this blog.
As you can see I have a busy week ahead. I have had my injection and started my drugs on Friday. Fingers crossed. I will know more about the impact of this treatment in 6 weeks time.

What nobody wanted to hear and I certainly wasn't expecting that!

2011-03-29T20:28:00.001+01:00

My physiotherapist was really pleased with my improvements in just 7 days. Mobility has improved immensely and I have done a solo drive to Worcester without any problems. Health related anyway. Did have to use breakdown cover to open the petrol cap on Bluebell.

Sadly my oncologist didn't have good news with the CT scan results. This has confirmed the following findings.

Liver - Multiple low attenuation lesions scattered throughout all segments. Typical of widespread hepatic metastatic disease
Ovary - Looks bulky. May be related, further investigation required. Oncologist is going to speak to the Gynae team.

Bone - Single area in Lumber bone sclerotic / is whiter then last scan (2009) A bone scan has been requested. Have had blood test done today for base line results and another one will be done in 6 weeks time.
Primary treatment is a monthly injection of Zoladex to switch off ovaries - no oestrogen being produced. Then Amiridex tablets which works by reducing the amount of oestrogen that my body makes elsewhere in the body which the tumours are feeding off. This is normally given to women who are post menopausal but I'm not, hence the Zoladex injection.

There are a few indiscrepencies between Anne's notes and the copy of the report I asked for so this is it for now. My GP has already phoned me and arranged appointment for tomorrow to have my injection so I start the hormone therapy on Friday.
Will let you know more when I do. Holly does know as well and is dealing with it in her own way. Me, I'm ok just want to move to the sea even more.

10 Weeks post op

2011-03-20T19:58:00.000Z

My wound is looking good but still need dressings and now using Caustic Silver Nitrate sticks to wipe over it to help dry it out. Went to see my surgeon last Thursday in Bristol and firstly he apologised for the mess up's that I had experienced. I couldn't respond as felt it wasn't his fault but did appreciate his remorsefulness. I have physio and CT scans in Taunton on Tuesday. The results of the CT scan will be reported back to me when I meet with my Oncologist on 29th March. I delayed the removal of my Mirena coil by a week as my Dr said that wouldn't impact the test results my onc was after. He spoke to her on my behalf and turns out there were other reasons why this was to be removed and she hadn't told me so I will take that up with her when I see her on the 29th.

On a lighter note my fabulous young daughter Holly has decided to do the race for life with my friends in Barnstable on Sunday 10th July. Teri had decided she was going to do this for me and we were with her mum Karen on Saturday who said she was just going to watch. Well from nowhere Holly piped up to Karen "I'll do it but only if you do too". Well I was gobsmaked as currently I am struggling to get her enthused on anything that takes her away from the telly and here she was challenging Karen (yes I was relieved she wasn't challenging me). I will set a permanat link to her sponsor page but in the meantime if you are able and want to please sponsor her using the following link.
http://www.raceforlifesponsorme.org/hollydavies2705

At long last the results are in!!!

2011-03-09T22:40:00.001Z

Anne Bebb very kindly got me to the hospital for my 9am appointment. In the waiting room the duty Breast Care nurse came and explained they were still chasing up the results from Bristol and asked to continue to the Breast Care centre for that team to check my back and the results should be in by the time we return. I couldn't believe my ears and not feeling confident this would be case. This cannot be happening for the 3rd time surely. 3 months I have been waiting for these results to be explained and my questions answered. I couldn't hide my disappointment and Anne was more vocal then me.
Regardless we went across to the BCC and got seen and I could tell that despite the discomfort I'm in and the episodes of breath stopping pain I am experiencing, the nurse was delighted at how well my back looked and that both sides looked nearly the same. The Dr turned up and agreed that it looked better then when he aspirated the fluid in February. We discussed my pain and discomfort and they agreed it would be better for me to have physio. I am working my right side more and not exercising my left. Also feeling is coming back so I will feel the pain. It made sense to me so waiting for another referral to be processed.
Off we trot back to see the Oncologist. After apologising for earlier we could now discuss my options as the results were now in. Went through summarising events since being diagnosed in December first, then she explained how she wanted to manage my treatment and why.
She is requesting CT scans for restaging. Risk of other sites being affected are low but has to be certain. Only if other tumours showed up would she recommend Chemo as Cruella's sister is the same as Cruella (Hormone receptive fed off oestrogen). Also the Sentinel Node Biopsy being clear, confirming no cancer cells detected escaping through the lymph system. Happy with that.
Radiotherapy - Only issue that hits the parameters for this is that there were lots of multi focal LCIS found in the breast tissue. The largest size was 13mm (which was confirmed as cancer) and the trigger is 20mm. - Wasn't expecting that but happy with her decision.
Hormone treatment - Well Tamoxifen was not effective so they want me to use Arimidex. Before I can take that they need to know if I am post menopausal. I confirmed I have had 3 blood tests and no conclusions have been made. I have now been advised to have my Mirena coil removed in order to have another blood test. I did question this last year and the response I got was that this wouldn't make any difference. Hey ho what do I know!! If I am pre menopausal I will be given an injection to switch off my ovaries.
Couldn't have asked for better outcome really despite the dodgy start. Feels like a big weight off my shoulders. Starting to see the light at the end of the tunnel...

2 little milestones completed today

2011-02-28T18:15:00.000Z

1st one was I have said goodbye to my VAC therapy treatment. I have lost my little dyson coffee filter after 3 weeks. Feels weird not to be attached to it. My wound is great but still needs dressings but I'm only loosing about 5 mml of Exudate from my wound and my dressings can be changed by the GP. Looking forward to a good night sleep tonight!
2nd one was after 7 weeks of not driving I took a short drive in my car. That felt weird too. Need to take that easy and use only for emergencies me thinks but still feeling like a happy positive bunny :-)

Seeing a light at the end of the tunnel!

2011-02-24T21:09:00.000Z

My wound is making huge progress on the healing front after nearly 3 weeks of VAC therapy.
Sadly, last week was a complete nightmare and I thoroughly wore myself out . Firstly thank you to Anne and Nige for getting me to Bristol for my Oncologist appt. However after waiting for one and half hours to be seen only to be told the results have not yet been received. I wont rant on here but needless to say I was not a happy bunny. Then I had to fight to get Taunton to carry out a 10 minute procedure to drain the seroma from my back. I had checked, but Bristol couldn't do this when I was up there on Tuesday. Even after examining me, talking to the team at Bristol who were ok about them carrying it out, they refused to do this and eventually after lots of phone calls here there, everywhere and with almost everyone, they conceded providing I got a referral. This was done and they saw me last Friday but looks like I've picked up another infection so on more antibiotics.
Monday was the start of my chilaxing week. Thanks to John and Sarah, my neighbours who insisted that they take us up to my friend Karen in North Devon not just the train station. I so want to move there! The hospitality was fantastic THANK YOU KAREN ! Caught up with Clare, Leia, Hope Luke and Faye. Yesterday Teri collected Holly and myself and we took TJ for a walk along Saunton Sands which blew away the cobwebs. I completely zoned out for a few days. Holly has chilled out too watching Friends back to back, jacuzi's, pizza and chips!! What more could she ask for ?
To top off a truly relaxing time, the oncologist from Bristol phoned me yesterday and asked if it was ok to discuss the results he had received on Cruella's sister. After my confirmation he advised that this tumour is made up of Oestrogen and with hormone positive receptors (Exact make as Cruella). With my sentinel node biopsy being clear it is very unlikely that I would be referred for Chemotherapy treatment. That's all I wanted to hear. I have loads of questions but will keep them for my oncologist appt on the 8th March in Taunton. I know there will be possibility of Radiotherapy and I'm sure there will be drugs but as this tumour grew whilst on Tamoxifen not sure which ones.
So feeling relaxed for a change but not popping the champagne just yet....

VAC Therapy now installed

2011-02-07T14:37:00.001Z

and working. This week is going to be so much better then last week. The District nurse and the Nurse Specialist turned up around 10am. Putting on the dressing and the training took just over an hour. I carry the pump and drain canister in a black bag with a detachable shoulder strap. If you want to know more http://www.kci-medical.co.uk/UK-ENG/vactherapy Fascinating read.
I just feel so relieved. Mine will probably be on for more then 5 days and the dressing itself will be changed on Wednesday, Friday and Monday and I empty the canister when necessary. As the pump makes a noise like a coffee filter machine I don't think I'll go to the pictures this week I may well be asked for a coffee :-)x

Quick Update

2011-02-03T12:02:00.000Z

My referral has been received at Taunton's Tissue Viability Team. I had a call this morning to confirm that equipment had been ordered and I would be seen at home on Monday but couldn't advise what time. I did ask why this was being left till Monday and got told there is little support for this over the weekend. As disappointed as I am I do understand. The more expensive dressings will arrive today so hopefully I should only need to change my dressing one a day. I feel like a huge weight has been lifted off my shoulders
Bristol Breast Care team have also contacted me this morning to see how I am and ensure the referral has got through.

3 Weeks 1 Day post op

2011-02-02T10:33:00.002Z

and my wound is dripping for England still. I had a more expensive dressing that Debbs put on for me on Monday which lasted till this morning. Went to see local nurse who checked wound and changed dressing which leaked before I got home. No sign of my priority referral to the Tissue Viability team made a week ago. My Bristol Breast Care nurse is going to chase this up today after clinic and Taunton are on standby as there is nothing they will do until that referral shows up from where ever it is hiding in Bristol. Didn't appreciate the impact this is all having on my well being till I went 2 days without leaks or dressing change. Have had to strip the bed this morning and 3rd top change and it is only 10.20am. Not a great start and as I didn't sleep well last night feel tearful today.

Still have had a better week then last week. Nige B took me shopping with his mother in law on Saturday. Sunday, Ali collected Holly and I and took us back to her house for a lovely Sunday Roast - Thank you it was lovely. Monday, despite feeling sick and nauseous went for a carvery at the Merry Monk courtesy of Anne - Thank you, I managed to keep down what I ate - Result. In the afternoon Claire P and baby Olivia came round. Nothing like a baby to put a smile on your face. Tuesday Hazel from work came and took me out to the Monkton Garden centre where we spent a fabulous time in the sun with a coffee - Thank you!!

Holly has been brilliant, and didn't she make me chuckle when she ran out the door this morning when I said my bedding had to be stripped. Hoping to have a lovely weekend with a trip to the Rock n Gem show (might even be inspired to be creative once the leaking has stopped) followed by a curry Saturday night.

I have had the Oncology appointment through and this is for the 15th Feb not the 8th as told last week. Hopefully the priority referral which appears to be in the snail post should get things moving tomorrow....

17 days Post OP

2011-01-27T10:20:00.001Z

Have had a few dramatics over the last week. The infection took hold before the antibiotics kicked in. My wound was leaking heavily and at one point a CSI agent would have looked at home in my bedroom. Huge thanks to my neigbours Debbie and Sara for running me down to the surgery twice, changing my bedding and then taking all my washing away to do. I put in a call to Bristol who were surprised that a wound site was leaking but said "First thing is not to Panic. You are on antibiotics minimising the risk of infection and just keep changing the dressings" Well that's all ok then! Thanks to Claire for doing some shopping, never ever have I bought such a big box of Maltesers for myself but they are doing the job. And not forgetting the Bebbs with Anne bringing food parcels and getting both Holly and myself round to theirs for dinner. And then there was Jill who took me out for an hour to Asda on Sunday. I went in one of the electric trolly's and Jill placed in the shopping.
The weekend I was a bit tearful which I think I can allow myself. I accepted the impact on my recovery this infection has had. Cancelled plans to visit family and attend a christening this weekend. Also the harsh reality of my vulnerability felt foremost in my thoughts following the death of one of my fellow bloggers, Daria, from Secondary Breast Cancer. This reminded me of the banter we had with my brothers David and Colin when they were faced in the same situation which did put a smile on my face for a bit and hoped Daria's family are drawing similar comfort.
Anne took me to the BRI for this weeks appointment. Dr Chaudry (one of the assistant surgeons) decided I needed more antibiotics, took a swab and also wanted Mr Raytor to see the wound. She also confirmed that an appointment has been made to see the Oncologist on the 8th February to discuss any further treatment plans e.g. Chemo based on the test results. Well he will be able to answer the majority of my questions not the surgeons.
Mr Raytor examined the wound and explained to me as they had to open up a 5 week old wound and the skin is not healing particularly well hence continued leaking. What they have done is placed a priority referral to the Tissue Viability Team. They will fit a Vacutex dressing on my wound. This will accelerate capillary action on the wound will draw the infection out, encourage the new cells forward to assist with the skin healing. Having read a bit on the Vacutex on the net it all makes a lot of sense but I'm sure he mentioned a tiny pump being used as I remember him saying "there will be a small regular vibrating noise" but can't locate relevant info. This is of course dependant on funding. Anne please feel free to correct me if I have got this wrong. If I don't hear anything by Friday I will chase this up. I successfully changed my dressing this morning but should have done it before it started leaking. I will get the hang of it soon!!

No Confirmed News however

2011-01-20T09:45:00.000Z

early indications are that there were multicfocal sites removed last week same as discovered in December. All the same, Lobular breast cancer and some non cancerous cells. Unfortunately the full test results from last weeks op didn't make the MDT meeting yesterday so the Oncologist has not reviewed them.
My Consultant surgeon's opinion is that as all the breast tissue has been removed it will be unlikely that I will need Chemotherapy again. Also this would not have developed during the 12 week break I had from taking Tamoxifen in the summer. Due to the scar damage on the new breast, it is unlikely that Radiotherapy will be recommended. This is all backed up by the excellent news that the Lymph nodes were clear. I am so grateful I had my op and they found it early on.

Unfortunately I have also developed an infection on the area of the wound where they had to re cut into the same scar tissue from December's op. No on a 5 day course of antibiotics to clear that up. Both Drains now removed starting to feel less disabled but still need to rest.

Maybe next week I can crack open the champagne!!

6 days Post Op - First day home alone

2011-01-17T10:19:00.000Z

and doing well. Holly brought up coffee and toasted teacakes for me before taking herself off to school. I feel nauseous in the morning so the food, coffee, painkillers and more rest helps me feel better. Another hour in bed before empting my drains as I still have 2 in and draining over 100ml between them. Strip wash before settling in front of T.V for most of the day. And this is how its going to be for most of this week.

Back to last week, op day, the 2 lady registrar's appeared to rush in whilst I was waking up in recovery to tell me my Sentinel Node Biopsy came back clear :-). I nearly lifted myself off the bed I was so ecstatic. Not sure who was more pleased, me or them. I remember saying "Does that mean no Chemo?" and realised that they cant' answer that at the moment.
I got back to the ward around 6pm with my sick bowl and managed to catch most of it this time but at least didn't splatter anyone else.
Wednesday, once my painkillers kicked in, I started to feel better and getting excited by the indication that I may be able to go home Thursday and when that time I arrived I carried on as I would normally, forgetting I had just had a major operation and this made me feel sick again, pushed my temperature and blood pressure up. Rachel knew as soon as she saw me and said "Still want to go the the pub then ? I guess not!"

James and Lynne are kindly taking to my post- op appointment this Wednesday. This is when it will be reported back to me the full test results of the tumour they found in December and hopefully my Treatment plan. A good start is knowing Cruella's sister didn't leave the breast. I'm feeling really lucky :-)

Away Home

2011-01-13T16:44:00.000Z

Sue rang me this morning, rather eagerly telling me she could come home today, aim to get there for 12 o’clock and we’ll stop at a pub on the way home. Hmmmmm.

As it turned out, Sue had got a little too excited and enthusiastic sorting her stuff out and packing, she got a bit hot and bothered, so we stayed a while and she had some food and tablets and left at around 2pm.

So, we didn’t stop at the pub or go via the Thatchers Brewery!! And she’s in bed resting hoping to get some good sleep tonight.

Also, had we left the hospital when Lil Miss Eager wanted, she’d have missed the beautiful flower arrangement that had been sent by her work colleagues.

Rachel xx

Operation Day

2011-01-11T18:50:00.001Z

Have spoken to the Staff Nurse and Sue is back on the ward, drips and drains attached.

They’re giving her sips of water to see how it goes, then she’ll have some food later on. Sick bowl is on standby!!

That’s all for now, will let you know more when we know more!!

Rachel xx

Wasn't that bad after all

2011-01-10T19:10:00.001Z

Day started good. Got everything ready for tea tonight, wrote down the return train times from Bristol, Anne took me to the station got ticket off I went.
Then on train I realised left notebook and appt letter at home with return train times. Got off at wrong bus stop in Bristol but still arrive at the BRI at 11am to find out appointment not till 1:30pm!!
After a browse and a glass of wine in the pub turned up at correct time and got seen after waiting for 45 minutes. Then it was just a an injection (no canular), massage injection site for 15 minutes then lie down for some xray's. Wasn't as bad as I thought it would be.
Now I really do have to pack my bag and yes will check letter for tomorrow :-)

Ready for a day of needles and scans

2011-01-09T19:52:00.000Z

which is all in aid of new technology for Sentinel Node Location / Imaging in 2 parts.
Part 1 Injection and first imaging session lasting approximately 1 hour
Part 2 If necessary (criteria unknown to me ) Imaging about 3 or 4 hours later lasting approximately 1 hour.
One of the injections will be of a slightly radioactive substance. At some point I will be injected with dye.
This is to assist my surgeon on Tuesday, identifying the Primary lymph node gate (my terminology) and remove gates 1 & 2 before continuing with my mastectomy and reconstruction. The removed sample will be immediately tested in a machine called OSNA (http://www.sysmex-lifescience.com/OSNA-assay-for-lymph-nodes-175-2.html) to see if cancer has travelled out of the breast in the Lymph system. With the results, a decision can be made during the operation as to whether to continue with a clearance or not as opposed to doing one straight away as in my last mastectomy in Oct 2009. Saving my lymph nodes reduces the risk of Lymphedema. I will be pleasantly surprised if this has stayed inside the breast this time.
Going to Bristol on the train tomorrow but not sure what time I'm getting back. My friend and work colleague Alice, is Holly sitting tomorrow night so Holly can stay at home and Rachel will land Tuesday afternoon for the week to take over.
Book ready, iPod charged. Suppose I could pack my bag but not feeling inspired to do much.

Happy New Year and a funny thought for the day

2011-01-03T11:05:00.002Z

Thanks everyone for your kind comments via blog, facebook, phone email and cards. They all help. Jo & Jo your card most certainly made me laugh. I did mention to Holly about going to find a Karaoke bar and she shook her head (in terror I think). I reminded her when we went to Tenerife February 2005 with Sharon Laura and Matthew when we lived in Brackley and one evening we did end up in a Karaoke bar. My turn arrived and Robbie Williams' Angels was my choice. Whilst I was singing my heart out the DJ went over to Sharon and asked her if her mate had a sense of humour and next thing he came out with tissue paper stuffed in his ears and waving a lighter.
New Years eve we went to Worcester to Kerri's house and I was telling them about your card the above story and as we were about to embark on an evening of SingStar and we all burst into the song I will survive by Gloria Gayner. Thanks Guys xx

A good positive thought for the day.

2010-12-30T11:02:00.003Z

Lying in bed this morning thought of another positive to all this. At least I won't have to have any more mammograms!

I am trying to sort out practical arrangements. When I get out, my lovely neighbours Sarah and Debb's are going to take turns to help wash me. I can empty the drains and record the volume.
What is proving difficult is care for Holly when I'm in hospital as Holly doesn't seem to want to discuss her options. Have now told her she has till Friday to make a decision or I'll make it for her.
The other issue I have is that on Monday 10th I have to have injections and scans (I'll explain in another post) for most of the day before my op on Tuesday 11th where I have to be on the ward for 7:30am. Now it makes sense to me due to the distance I live from the hospital (1 hours plus drive ) and the time I have to be there the next day, to have a bed from Monday night but have been told this morning that I don't qualify and to look at other alternatives.

I really don't fancy going up to Bristol 2 days on the trot and the 2nd trip being silly o'clock in the morning but currently that's looking like my plan B.

Remembering Absent Friends and Family

2010-12-24T09:07:00.001Z

A spray of roses just for you, Sprinkled with teardrops instead of dew, And in the middle a Forget-me-not, to let you know we have not Forgot ♥ xxxxx ♥ xxxxx ♥

A mulled cider in the Plough with my sister Rachel yesterday and we toasted Col Dave Nige Keith and Mum. A white feather descended on the table from nowhere. A year now passed since Colin left us with the Angels.

Feeling more positive about next year. Rachel pointed out that she copes with this by thinking my recently found tumour (Must get this christened) is only 13mm and Cruella was 29mm so has been found earlier!!! I cope as I know exactly what to expect :-(

My niece wrote the following poem in memory of Colin

In memory, of an amazing man.

by Laura Tai Davies on Friday, 26 November 2010 at 22:07
A smile and a grin, you never had a frown
Your love for us all was something so special
That you can make me smile with just simple words
The cleverest idiot, in my universe.

Many people loved and knew you,
Nothing like how close you were to my heart
I just wish that I could turn back the time
And say the words that were you in your life.

Always look on the bright side of life
Was the thing that you lived by
You never faltered and never failed
You somehow always prevailed.

Your infectious laughter and the cheeky grin
The bushy moustache, hanging on your lips
The crap jokes you always did or told
The grin never faltering, even when you went bald.

I loved you from the beginning
Right till the very end,
You were my light and shining star
I now know you’re never afar.

I just wish I had the chance to say
‘I love you’ once more.
The fact you kept on laughing till the end
It made me thankful that you were Gods send.

I miss you and I love you
Never ever forget that.
Give everyone a hug from me,
And send a kiss to David please.

To someone who changed my life for the better~
I miss you Colin

Merry Christmas and Happy new year to our friends and family where ever you all are xxx

Bouncing back

2010-12-19T16:43:00.000Z

Despite my brother Kevin and his fiance Amanda being here for the weekend, feelings of anticipation won't go away. I know what to expect, so why feel anxious ? I know why. This is horrible.
I went through a box that I keep all the cards and letters I received last year and this made me smile for a bit at least.

May you always have an angel by your side
Watching out for you in all the things you do
Reminding you to keep believing in brighter days
Finding ways for your wishes and dreams to take you to beautiful places
Giving you hope that is as certain as the Sun
Giving you the strength of serenity as your guide
May you always have love and comfort and courage

Back to work tomorrow that should keep my mind occupied.

xxx

What a bummer

2010-12-16T10:42:00.002Z

Went for my post op assessment yesterday in Bristol. Looking forward to my having my dressings removed so I can have a shower and wash my own hair. Holly soaked me when she did it for me.
After a chat with one of the ladies I was in hospital with last week, got called in after a 10 minute wait and along with my surgeon and breast care nurse a 3rd person was in as well whom I just thought was a medical student. Mr Rater started talking about the processes the breast tissue goes through once it's removed and I nodded yes I'd expect it to be tested, then he hit with "we have found cancer in the tissue"
In summary the Histology report for the breast tissues shows Multifocal Lobular Cancer despite being on Tamoxifen with the largest focus being 13mm and identified as G2 Lobular Breast Cancer. There are other lumps that has been confirmed as Lobular Carcinoma in situ (LCIS ) which increase the risk of developing into breast cancer later on. Unsure yet but it is likely to be a new Primary cancer rather then a recurrance of Cruella.
Treatment Plan - Mastectomy with an immediate reconstruction booked for the 11 January 2011. They have discussed the technical aspects because this breast now has wounds and due the the amazing way they have healed he is confident with the options he has that he can still do another brilliant job.
I have said I do not want to go through Chemo again and I got "We will cross that bridge when we get to it" Well they are going to have to really sell the benefits of that one to me!
Holly took it on the chin not sure it's sunk in yet.
I'm ok had a good cry and back to making the practical arrangements required for me to spend a week in hospital.
Have asked them to supply me with a sick bowl as I come out of recovery this time though :-)

Well that's that bit over with

2010-12-15T09:59:00.000Z

and I am over the trauma which I will summarise for you .
Last on list so didn't get taken down till 4:30pm. I was allowed a glass of water around 10:30am. Once in the theatre couldn't get a vein to put in the cannula. 3 attempts on my my left hand after reminding them not to use my right hand due to the risk of Lymphodema 4th attempt on my foot and it was looking like my op may not be happening then after some beating, the 5th attempt in my leg and I'm asleep.

I woke up in recovery feeling very thirsty and sipped chilled water whilst coming round and got took back up to the ward around 9pm. Sipped a coffee and nibbled 2 biscuits. When I started to feel sick I realised I hadn't been give the buzzer control and I was attached to the bed by my drain. A confused nurse came in as with 2 of us calling and a 3rd buzzing wasn't sure who to help first but it was all for me and I confirmed I felt sick. By the time the nurse returned the projectile vomiting had started missing the bowl. She and I was covered and the bed. The lady opposite me ducked as it flew across the room stopping just short of her bed. During the episode I lost my control of my bladder so all in all I was in a very unpleasant mess which as my nurse was on her own was left in for far too long. After cleaning the floor my nurse got a bowl of hot water and cloths so I could wash myself down. A second nurse appeared telling me they were going to give me some anti sickness drugs and where was my cannular? All I could remember was that it was in my foot. Whoops nothing there. You are not sticking another one in can I just have tablets and she explained that she would be able to inject me and it would just take a bit longer to get to work. Eventually I was clean and dry but not too warm in a pretty pink gown. so thankful I took my dressing gown. When I got off the bed ooh look canular in my leg !!

Come morning after another very small sickness episode, I was told they would need to see if my breakfast would stay down and my surgeon agreed I could go home with the drain, I had to manage going home with 2 last year and by 10:30 I got thumbs up and put in motion my plan for coming home and thanks to Alex I was home for 2pm.

1 week later, wound healing well with drain removed Saturday. I am going back to Bristol to have my dressing removed today :-)

Boob Op pt 2

2010-12-06T21:50:00.002Z

Well, Sue was feeling a bit fractious this morning, but got to the hospital and booked in all ok.

She texted me to let me know she was last on the list, so she wouldn’t be in surgery till late afternoon. So very happy we had such a lovely dinner last night courtesy of The Bebbs.

Texts received throughout the day were full of the usual really interesting comments, such as, just been drawn on, bored, hungry, bored, thirsty, bored, ooh and the anaesthetist is moving to Taunton next year! 

Anyway, she’s out of surgery and back on the ward now, hopefully, all things being well, should be home some time tomorrow.

Rachel xx

Twas the night before my 2nd op

2010-12-05T21:29:00.000Z

and a fabulous last supper was had curtesy of the Bebbingtons. Thank you guys !!
Plan A to get to the hospital was no longer an option this evening but before I could contact Plan B (Alex) Nige Bebbington , who was never on my plan list, told me he is taking me on the way to Street. Ok a little detour but all organised now and Alex gets a lie in.

Feeling a tad nervous but the roast pork dinner has made me feel a bit sleepy. Got an early start tomorrow and Rach will update blog in the afternoon hopefully...
Night all

xx

Operation Date Postponed

2010-10-13T08:17:00.000+01:00

I came home yesterday to find yet another letter from the Hospital. I opened it with excitement thinking this was my pre op assessment appointment come through. Sadly it was a letter confirming that my operation date has been postponed to the 6th December citing other emergencies as a possible reason.

Gutted as I am, I know that the reason for this is probably a lady who is at the stage I was at, this time last year. However on the plus side, I have 8 weeks to loose at least half a stone, which I know a can achieve if I put my mind to it. It's just the practical arrangements I have to re arrange now and I think I should sort out plan B.

2nd Operation date confirmed

2010-10-10T20:15:00.000+01:00

I have been on Tamoxifen for just over a week and and so far so good. Getting more hot flushes. So far, knees are holding up as well. All is good.

Opened up my post today. Holly puts it in various places around the house and doesn't tell me. I found a letter confirming my date for my next operation as Monday 8th November. This is to reduce the size of my other breast to match the one that was reconstructed last year.

Just got to make all the practical arrangements now.

Test results confirmed

2010-09-29T20:10:00.000+01:00

I'm defininatly pre menopausal so it's back on Tamoxifen.
I have not taken them since 12th July and I feel really great. I have had a lovely summer. I know, it wouldn't take much compared to last year! I have had 2 lovely holidays and apart from feeling tired occasionally, due to waking up at 2am on a regular basis, I have no complaints. I feel more in control then I have done for a long time.

My only concern about going back on Tamoxifen is the pain in my knees. Currently this is nowhere near as bad as it was and it's only recently improved. I swim every week and I'm going to start some cycling. I know I also need to start losing weight.

I spoke to a Breast Care nurse from Bristol today. I am on the 18 week wait list there for my 2nd op and wanted to find out if I should be on them when I have my operation. The nurse confirmed that I will be asked to come off them and as a general rule it is usually 2 weeks before the operation date.

I asked her if she had any useful hint's to minimise the pain that could return to my knees and seemed surprised that I am putting this down to Tamoxifen as this is a more severe side effect of Arimidex. I know that there are ladies suffering joint pain with Tamoxifen. However she asked me what chemotherapy I had and she advised that the side effects of Docetaxel - joint and limb pain, could take a while to get out of my system and that could have been the cause of my pain. However I will be grateful for any useful suggestions (chopping off legs not an option!)

So I'm really cheered up by that thought. To mentally prepare myself for the onslaught of side effects, I know I am a much healthier person then I was a year ago - Chemo - oh so last year, no major operations, no radiotherapy to contend with and no more family funerals! (I insist if anyone is listening!) There will be minimal side effects !!

Watch this space....

Test results through

2010-06-30T08:39:00.000+01:00

The bad news is the blood test result was inconclusive (so I'm not definitely post menopausal)
The good news is I can stop taking Tamoxifen for 6 weeks so I can be retested.
The better news is , stopping these drugs from next Tuesday makes my 6th week when I get back from a relaxing holiday in Rhodes.
I am cheered up by this news it has to be said :-)

Oncology Appt 15th June 2010

2010-06-17T20:30:00.003+01:00

I was geared up with my own reasons for coming off Tamoxifen when I went for my appointment. It was like visiting old friends when I arrived and felt warm and welcome.
The Breast care nurse was waiting for me when I got called in so I was already talking to her about what I was doing to minimise the side effects that I am experiencing from taking Tamoxifen. When the Onc Consultant came in even he was impressed with what I am doing. When I get a night sweat, I take a Dioralyte the next day (replenishes lost salts and water usually prescribed for Diarrhoea) and so far so good - I have not had a nocturnal leg cramp since !!
He was going to suggest that due to the type of tumour (hormone positive) and my age (wise) I change hormone prohibitors to Raloxifene (I think - it began with an R). They took bloods to be absolutely certain I am post menopausal as most certainly the Chemo last year (that sounds good) would have brought all that on. There will be a cheer when I get that result :-)
He was pleased with my how my new breast has recovered from radiotherapy despite there being a bit of fluid. He also said I would only be called in for annual Mammograms and doesn't feel it necessary for any other scans to take place unless I have symptoms that I am concerned about. The risk of recurrence is there but until it materialises, there isn't much they can do and feel that I shouldn't go through the process of scans and worrying about the results. I'm still not sure about this bit but then I do need to focus on getting fitter and reducing my BMI. Without sounding arrogant, the impact Chemo had on Cruella, which was 2.9 cm, any particles from her that were so minute not to be to picked up by the scans I had last year, would be non existent.
So I have come away feeling still nervous about what the future holds with reference to cancer although positive over the next steps.

Another first and Positive Thinking Rocks !

2010-05-27T23:43:00.001+01:00

I swam 30 lengths of our local swimming pool in an hour the other week - (25 lengths is half a mile). Going to try and go weekly. Another first for me was mowing the lawn and doing some weeding the other night. I still ache but pleased with my efforts.

Last week a leaflet drop man had fallen over in our road after being chased by a neighbours dog. I didn't see the incident, I just thought how lovely the community spirit was with the neighbour making this chap a cup of tea. I commented on this to them and the fact that should he need physiotherapy to get a referral now as I currently have to wait over 4 weeks to have my hand seen. Any way to cut a long story short, it transpired that this chap stopped working for the local NHS after his mother became ill with Cancer. He couldn't cope with the environment he was working in. I gave the more social summary of my experience over the last 2 years whilst working for the NHS - loosing 2 brothers to cancer and my own cancer journey.

His response of "You must be depressed then" really had me questioning whether my friends and family considered me depressed and if not should I be. I replied I'd had a few moments where I allowed myself to feel sorry for myself, but on the whole I just got on with it and deal with what I had been dealt with.

Yes I'm angry at what myself and family are going through but disagree with this chap as I am not depressed. And thanks to people I have spoken to that agree with me (yes I had to check to make sure) This has made me realised how great my positive attitude has been to my well being. Some of the thoughts that have regularly passed through my brain over the last 15 months are "Life doesn't chuck at you anything you cannot deal with" and " A woman is like a tea bag, you can not tell how strong she is until you put her in hot water".

Almost a week later, with man's statement till going round my head, I feel really really lucky. I am angry and it hasn't been great but this could have been so much worse..

More Firsts

2010-05-02T20:53:00.001+01:00

I did it. I booked and had a hair cut. It seems to be straightening out a bit more now. We always feel good after a hair cut and this was no different. I know it was just a trim and with short hair we were limited but I had it spiked up and this lasted until the next wash. I don't feel right about using product on my hair with it being so new but I know it won't be long before I change that view.

Another first - Went for a swim on Friday night with Ali and Harry. My new costume made me feel very comfortable. My back scar is visible but it looks great and it didn't bother me. Nobody would notice my big boob little boob look.
We were the only ones in the pool when we got there and with Holly and our friends already in I realised there was no way I was going to jump in. I carefully went down the steps and then it was pure bliss. I am slow but we chatted and swam lengths. It was fab. I even retrieved a hoop from the pool floor. I came up laughing. It was well weird not having any hair that floated around my face in the water. We had a lovely time and I am definitely going to start going regularly to help increase my agility. Might even get my bike out...

Anniversaries and Firsts !

2010-04-09T19:42:00.001+01:00

My skin is healing well from my radiotherapy. My arm is feeling as it was before it started which is good. Have been busy getting on with things and time is flying by.
I have made time for reflection - 12 months on from my first chemotherapy session- I smiled when I thought about that day, laughing at Rachel missing the train rather then cringing about hyperventilating over the drugs and needles. Shows what time can do....
To celebrate Easter I shaved my legs for the first time in 12 months and underneath my left arm !! Yes I had to share these firsts with you !! I'm even thinking about getting a hair cut to have a short cut look !!

I did have a pint of Scrumpy Jack for what would have been Colin's birthday on Monday and I remembered Dave and Mum's anniversaries on Thursday with a glass of red wine. I know time is a healer but it still feels wrong......

One year on.....

2010-02-26T19:15:00.004Z

This has been an emotional week. Monday we travelled down to Croydon for my Uncle's funeral. The upside was the family reunion with our relatives on mum's side. A lot of lovely childhood memories were rekindled. Contact details swapped and looking forward to a reunion for the right reasons!!!
Came back Wednesday and continued with my R.T. treatment. My underarm is now very sore and restricting movement in my right arm. The rest of the target areas are ok including under the breast where they would expect to see some damage. On today's visit I had the end of treatment chat with the Radiographer, where they confirmed that my skin will get worse after my last treatment (on Monday) and it will be between 10 and 20 days before my skin starts to get better. Oh well .....
Today, 2 of my old team came into my work base, including Kath who was with me when I was given the news that I had Cancer. I'm glad we had some time together, (yes it was the pub lunch time) so much has changed all round in the last year.
I am now thoroughly getting excited about our trip to Edinbrough. Flying out a week today for Freds' 40th and Barbara's 50th birthday celebrations. 15 of us in total and we are going to have a whale of a time. The C word is banned unless it's C for Champagne !!!!
Have a fab weekend everyone!!!

Radiotherapy - 4 Weeks down 1 week left

2010-02-20T15:20:00.004Z

I mentioned to the radiographers about feeling nauseous on Friday and they said that it would not have been anything to do with my treatment but to keep them informed. I haven't felt as rough as I did on Friday and as I started to feel bunged up beginning of the week, I think I was just starting to come down with a cold. I am sleeping much better this week as well so I'm feeling pretty good at the moment. The senior Radiologist examined me yesterday and I have to treat my underarm as if there is an open wound and has given me Aquaform Hydrogel wound dressing to apply twice a day. Thankfully I still have limited feeling there so it is not as bad as it could be.
I met with the Breast Surgeon at Taunton on Thursday and went through my options for making me look symmetrical and showed me what the operation would involve. I am going to keep my Bristol appointment and see what they have to say as well to help me make decisions.
We have been off out everyday after RT. Cheddar, Taunton, Weston Super Mare and Camelford. It has been a relaxing and entertaining week and only a couple of times towards the end of the day I have had to hold off going to bed as I didn't want to go before the kids!

This weekend I am just getting organised for next week. Monday I am going to have an early treatment appointment as catching the Paddington train early evening to attend another family funeral in Croydon on Tuesday. I am getting back Wednesday mid afternoon so can make my usual time and now having my last treatment on Monday 1st March.

So just chilling and conserving my energy for a weekend in Edinborough for Fred's 40th and Barbara's 50th birthday celebrations on the 5th March. Getting really excited.... He he he

Radiotherapy - 3 Weeks down 2 to go

2010-02-12T20:28:00.004Z

All the radiographers are pleased with how I am responding to this treatment. My skin is bearing up really well. They have assured me that they are treating me!!

I am being quite religious in my routine of applying Aloe Vera gel to the target areas and I'm in no doubt that this is key to the current state of my skin. I have no peeling it just looks a bit tanned. I am starting to get uncomfortable underneath the breast but undo my bra rather then use the pads given to me.

Wednesday was the half way marker and today I felt more tired then usual. Whether it is because I am so tired I don't know but felt nauseous around lunch time and felt I wouldn't last the rest of the day at work. I started to feel a bit better after a bottle of Coke, food and sugary sweets and surprised myself as I was gearing up for coming home and going to bed.

I'm on annual leave next week as it's half term. Sandra and Kieran have come down to stay. At least if this is the onset of the fatigue that you are told accompanies this treatment, I can stay in bed whilst Sandra amuses the kids!!! Then there will be only one week left of treatment before recovery period starts!! Whey hey bring it on!!!

Radiotherapy - 1 Week down 4 to go

2010-01-30T09:04:00.021Z

I feel a sense of achievement and relief. I am still anxious about how I am going to feel after week 5 but week 1 has been a breeze. Friday, my 5th treatment, I was out of work for about an hour which included a 15 minute wait at the Beacon Centre where I have my treatment. The girls at work are taking it in turns to moisturise the target area on my back - THANK YOU !! - Holly does this for me at home and I do my front. It feels just like you have sat in the sun without your sun cream but I have been warned the skin will get hard over the duration of my treatment. I am using Aqueous cream and Aloe Vera gel, 3 sometimes 4 times a day.

I turn up for my treatment, get booked in by the receptionist and wait to be taken to the locker room where I take off my top clothes. I can either wear a hospital gown or my own clothes. I have chosen to wear a vest top. I get released from my changing room by the nurse and walk round a couple of bends to where the Radiotherapy machine is. I remove my top and lie on the bed and the radiographers do all the work.

My hands are placed out the way in the rests so that they are the same level as my head. They then move and juggle me to the right position using laser beams to measure up the 3 dot tattoo's on my chest and working to the mm. Once they are happy I am in the right position I have to stay as still as I can. The machine delivering the beams moves around me. The delivery of the beams takes up about 10 minutes in total which includes the radiographers popping in to check and reset it. They are watching all the time from cameras in the room.

I have had the pleasure of listening to the best of Lionel Ritchie twice this week so have took in my own CD of Well being music that I use when I am trying to relax or mediate- Thank you Leina !!

The team are brilliant there. I feel relaxed and confident with them. I am meeting other RT patients in the waiting room as well including a couple of familiar faces, a lady from my Chemo days and another lady from my GP practice. Hark at me "My Chemo Days"

Have a good weekend everyone and bring on Week 2!!

Day one of Radiotherapy Treatment has arrived!

2010-01-25T19:11:00.009Z

Feeling quite anxious all day. I knew the administration of it was going to be painless but it was the unknown. It was uncomfortable more then anything and I have tingling like sunburn as I write this 2 hours later. I had to lie still for over half an hour with my arms resting above my head on arm rests. I managed to stifle a sneeze and was desperate to clear my throat after a while. Lionel Ritchie the best of was playing on the CD throughout the duration. The bed was still and the machine moved around me, left, right and right back clicking during intervals. Tomorrow's session should not be as long but also not as quick as they hope it will be until they get comfortable with all the measurements. I have to go Monday to Friday for 5 weeks. By the end of it I should be in and out in half an hour not the hour and half it took today!

Last Tuesday I went to the Force Cancer Centre in Exeter for a Look Good Feel Better workshop.Take a look at http://www.lookgoodfeelbetter.co.uk/site/index.cfm for more details. I arrived in the town centre early as I was meeting my friend Cathy for lunch and did a bit of a shop. The workshop was brilliant, going through our bag of goodies and using them on for the 12 steps make up programme. Again it was so good mixing with other ladies at different stages of their treatment and some not even Breast Cancer. Glad I was able to make the trip as I had cancelled my first appointment last year as had so many appointments in the same week.

Got to remember to put on loads of Aqueous cream day and night now. Will also invest in some pure Aloe Vera gel and keep it in the fridge !!!

On another note my sister in law has posted some of the tributes we received for Colin which I also read out at the service. http://sandy.thedaviesclan.net/2010/01/thank-you.html For those who knew him and might like to have a read.

Here's hoping I get another good night sleep....

Happy New Year - Radiotherapy here I come!

2010-01-05T18:41:00.005Z

Happy new year everyone! Hope ours is a bit better then last year. Can't even describe the mixture of emotions going through my head at the moment...

Back at work today and went to my first Radiotherapy appointment. The Radiographer was lovely once I got seen after waiting for 45 minutes. Had a chat, going over the forms before lying down on the scanner. The Radiographer explained to me the process and she was a bit evasive over the use of the needle word. I butted in and said your using needles and she nodded. I rolled my eyes, here we go again I thought but at least it will only be once she says hoping.

Both the Oncologist Dr's then came in to mark the spots. I laughed as it was like a mini reunion as I hadn't seen one of them since September. I got taped, scanned and needled. It wasn't too bad. I can't feel anything on my right hand side any way!

After getting dressed they had to take my photo. This was weird as I had to hold up a big strip of paper confirming my patient number, bit like someone who has had to go to prison and then it was all over. I know I am over the worst of my treatment but not looking forward to the fatigue that is going to accompany the Radiotherapy. Just starting to feel closest to normal then I have for a long time. My treament plan has also been confirmed with 25 appointments starting on the 25th January. All of them are at 4:15pm or later apart from 2 which are at 2:45pm. Also don't have to fret as Colin's funeral is before this treatment starts. It feels weird as we had been sharing our treatment trauma's he didn't get to tell me how he felt when he had his radiotherapy. Hey Ho.....

Angels are celebrating

2009-12-24T08:33:00.003Z

as my younger brother passed away yesterday evening. Peacefully, dignified and with his family. He is now with Mum and my other 3 brothers and no longer in any pain. Here's to a better year next year starting with a christening and a celebration of my late brothers life.

Merry Christmas everyone and raise a glass.

Love Sue xxx

8 Weeks Post Op - Normality finding it's way slowly

2009-12-13T19:09:00.014Z

I have been back at work now for 2 weeks which is brilliant. I still have discomfort but it is diminishing. I can even lie on my right side for a short time now.
2nd December is when I saw my oncologist and the radiographer. They examined my new breast and agreed the results were good. The Dr told me probably 5 weeks of radiotherapy and the radiographer told me 4. I have decided to think about 5 so I wont be dissappointed. My appointment for being marked up has already come through for the 5th January and they'll confirm my treatment plan then.
This was my first visit to the Beacon centre since my last chemo in September and it was a good feeling seeing the familiar faces. They recognised me even though Dolly is totally redundant now. One lady on the reception had recognised me on the T.V. and came over and told me she thought it was me and how good it was :-) .
We also decided at my visit to the Breast Care Centre on the 4th Dec that I don't need to have any more fluid drained now. Yippe ! Also one of our local breast care nurses returned my call on a unrelated issue and said she had seen me on T.V. and said how brilliant it was !
I have only cried 3 times in the last fortnight so feel I am coping well. I have been able to start moisturising my new breast ready for the radiotherapy to dry it out. I did struggle with touching my breast all over inititially but eventually got over it so I thought I would push myself one step further and look at it. Looked at my back wound first and thought looks rough but I know it will soften in time. I looked at my breast but not for very long. It wasn't me I thought and I understand why people say it is good but to me it's not my breast and didn't think it was great to look at. I know technically it is great but I struggled to think it fab. I know more work is to take place and my body shape is going to change again but decided wont be looking at it again any time soon.
I have 1 week of work left before I break up for the Christmas festivities. I hope to get my christmas cards done and out next week. Then some baking to do. Some things never change and I feel lucky in the knowledge that I can cope with it. xxxx

6 weeks Post Op

2009-11-27T12:33:00.023Z

Hi everyone
I'm feeling really fab at the moment as the Dr said I was ok to go back to work Monday, had a good nights sleep last night and have been driving again this week- my independence is coming back. I still have restricted mobility in my arm but that is going to be months before that gets back to normal. Still get tears for no reason but better out then in. I think last night was the suspension of my life whilst dealing with Cruella and getting well again and then this morning I felt great!
I have had 2 trips to see my surgeon in Bristol and he doesn't want to see me again until March. He is extremely pleased with how my new breast is shaping up. My back wound is still moist in the middle but again in time that will change. 2 weeks ago I had 700ml of seroma drained from my back and 4oomls this week so won't be long before that dries up.

Monday this week I attended a Moving Forward seminar in Bristol. Thank you Carl for getting me there and thanks Claire from picking me up from the station and taking me home. This was an event organised by the Breast Care nurses at Bristol. There was a talk on Diet, exercise, Lymphodema, and dressing after a mastectomy. We also had massages by the Therapeutic team from the Red Cross. The whole day was extremely relevant and interesting. Notably meeting other women at different stages of their treatment plans. Some of us were able to give reassurance to a lady having her first chemo session yesterday and I was given reassurance about my radiotherapy treatment from ladies who have already had theirs. I could have done with meeting a similar group after I was given my diagnosis. There's nothing like meeting people who have either recently completed or still traveling the same journey. I didn't feel so alone and whilst we are all different, we were all on the same journey.
Funnily whilst waiting to be taken up the room where the seminar was being held, I was chatting (yes some things never change) about our respective treatment plans and I confirmed I hadn't met many people who had had their chemotherapy before their op and this lady, also called Sue, went onto to say that there was this lady on the T.V. that's had the treatments in the same order as you and was trying to remember the name of the show. I smiled and owned up to it being me :-) - And thank you for my lift to the Station Sue and Sue's husband and keep me posted on how your radiotherapy treatment goes.
Last Friday was a great evening thank you Holly and the friends you roped in to help you give me a birthday party. I am so looking forward to going to work next week. I have an appointment with my oncologist on Tuesday so should know more about my radiotherapy treatment and I also need to get my back drained again. Partial normality coming my way :-). My nails are still ridged and breaking off but my hair has been having a groweth spurt so have started to make Dolly redundant. That may change next week when I go into work but we'll see.
Taking Holly to see New Moon this evening and Saturday we are going to Worcester to have a joint birthday celebration with Kerri. Will also catch up with family and friends whilst I'm there which is always good.

Have a great weekend everyone

Sue

Post Op part 2 !

2009-11-01T18:36:00.051Z

What a busy bee I have been since I last posted.

Firstly our trip to London for the This Morning interview. Holly and I arrived Monday lunchtime and after being dropped of at our hotel decided to get something to eat and head into Convent Garden for a mouch. It was quite pleasant there was not huge crowds. We walked to Trafalger Square spending some time in the National Art Gallery before making our way to Leicester Square and catching tube back from Picidilly Cricus. Rachel arrived and Kath turned up for dinner as well as she was in London that week staying around the corner. We were driven to the studios in the London morning traffic arriving in plenty of time for my debut T.V. appearance.
For those who didn't get to see this http://www.itv.com/lifestyle/thismorning/more/breastcancerawarenessmonth/

Tracie arrvied on Thursday to take up her role as mine and Holly's Carer. We had a pink friday at work. Rachel and Laura finally turned up, party at Kaths Friday night. Saturday I started to feel in a ummm lets try and not think about Monday mood. Planned a shopping trip for my Farewell boob party. Tracie took Rachel to Hospital, meanwhile Kerri and Wendy turned up so mood lifted. Rachel and Tracie finally returned with a surprise guest. My sister Francis from London. I knew she was up to something and Francis never entered my head !! That was it then. Nno room for the anxious mood and we had a lovely evening with lovely food, drink and company. Sunday a walk up Cothelstone hill cleared the lungs. When everyone departed, I got out the questionnaire that I had agreed to take part in and completed it. Got Holly organised and walked her over to her friends house. Would we like a glass of wine ??? ummm didnt take long to decide on that one. I embarrasingly forgot to make Holly's sandwiches for the next day but Claire wouldn't take no for an answer and provided Holly with her lunch. Thank you Claire and Carl for your kindness. We had a lovely distractive evening. Couldn't bring myself to pack so left that for the morning.
Had a sniffle before I got up. I know I'm in safe hands, I know it's the right thing to do but still feeling mournful about loosing my breast. Time whizzed by and before I knew it I was being brought round and given sips of water before being taken back up to my ward where I was going to be cared for along with 5 other ladies. Tuesday my surgeon examined his handy work and confirmed that he was pleased with the outcome. All I can see is lopsided breasts and my cleavage. I have taken a peak but have decided to leave this for a while. The nurses are angels is all I can say. There were 3 ladies in our bay who had Tracheostomies fitted and this just reminded me of the last time I saw Dave before he passed away last year. So when the tears started, as they do, I didn't know why or who I was crying for. Me Colin or Dave. Thanks to everyone for all my messages, cards flowers Chocolates and visits.
I came round from surgery with 4 drains attached to me where the Seroma fluid was being drained from my back. I went home with 2 and the level of fluid being drained dropped. I couldn't wait to get home and I got to choose Chilli for tea!! During tea Tracie noticed one of the drains had stopped working. We both thought that was good. Later when I went upstairs I realised I was wet underneath my arm. I hadn't felt it as was still numb. Tracie organsied visit from District Nurse and we decided it had dislodged somehow and attempted to repair it. I woke up drenched, after my first full nights sleep in a week. My scheduled D Nurse got onto the BRI and I started to cry as it sounded like they wanted me back up there. It wasn't a bother Tracie reassured me but I just didnt want to go anywhere. End result was the D Nurse was allowed to remove the drain - Hooray only 1 more left which got removed Sunday as hardly anything was coming out. Starting to feel better. Tracie has been brilliant. Never mind have I been doing as I am told. I have been submissive as couldn't do anything anyway or as Tracie put it She is the dominant bitch !!
Retail therapy has helped but had a blip last Wednesday when I went for my follow up appointment in Bristol. My back was drained again, wound checked and dressing changed. All agreed my wound was healing well and the lovely consultant surgeon wanted to know how I was manageing and getting on and then the serious talk about the Pathology results. They were able to confirm the orginal size of Cruella in what they had removed so she's gone. However, of the 10 lymph nodes they removed for examination they confirmed that 4 had cancerous cells passed through them and therefore I was going to be refered for radiotherapy treatment. I always knew this was a probabilty but I really didn't want to hear it. This was going to minimize the risk of local recourance of the same tumour. All I could think about was that C cells had travelled outside my breast. I managed to make it through the rest of my appt. The rest of my treatment can be carried out in Taunton unless I specify otherwise. For practical reasons this is great news and he has met the new reconstruction surgeon that is starting here soon and that I would like him. I didn't even make it out of the hospital before the tears started. Thankfully Tracie was paying more attention then me and reminded me that 6 out of the 10 didn't have c cells which is also good.
Thursday I set about ringing the Breast Care team in Taunton to arrange appointments for my back to be drained and to be measured for a prosthetic breast. After being told the nurses were all in a busy clinic and I was happy for an afternoon call I had a call back within 5 minutes and we arranged an appt for Thursday afternoon this week. Went out to lunch with work collegues and when we got back I had a letter inviting me out for Christmas lunch with the Somerset Breast Cancer Support Group. Didn't know they existed. Friday more retail therapy required and had a productive afternoon out in Wells. When we got home I had a message from the Breast Care team in Bristol, Sorry we missed you on Wednesday, glad to see everything progressing well. I take it you are out which is good, please ring if you need us for anything and if I don't hear from you I will call you back on Monday!
I have had a lovely weekend. Laura came down, Lynne came up, James, Lynnes new bf, came over. Tracie did my make up and we scared the monsters knocking on our door >Big Grin< !! Sunday had a lovely lunch over in Chard with some friends. I felt tearfully tired when I went to bed but I had a good nights sleep and here we are the start of another week where I am gaining more Independence on a daily basis.
Sometimes in the morning before I get out of bed, if I lie still I don't feel any discomfort and for a minute I can pretend that none of this has happened and that it is all a dream and that I am getting up in a mo to cycle to work :-)

Operation Boob Job (pt1)!!

2009-10-19T20:46:00.008+01:00

Ok Folks, short and sweet update for you!!

Operation has gone well, no problems and Sue is in recovery recovering!!!

I've left a message with the Staff Nurse passing on all your good wishes etc., and will hopefully get to speak to her sometime tomorrow.

Thats it for now, I'll keep you updated with any news I get.

I know Sue appreciates all your support and good wishes xx

lots of love

Rachel (and Sue)
xxxxxxxxxxxxxx

A huge THANK YOU !!

2009-10-15T08:34:00.013+01:00

Thanks to all of you who have made the time to leave messages on my Blog, Facebook and phone. Your comments and experiences that have been shared with me have moved me to tears. I had no idea of what the impact would be of sharing my Blog with the wider audience.

Despite the wonderful support I have had, I have felt a loneliness I can’t describe. I know that I am not the only one on the planet going through this. Sharing my journey has helped eliminate those feelings to a degree. Using my sense of humour and helping other people has been enormously beneficial. Thank you to those who have shared there own experiences with me. I feel privilidged and hope that it has helped you in some way writing as it has helped me reading them.

I am so pleased knowing that my appearance on “This Morning” yesterday has encouraged so many women to check themselves (men shouldn’t be excluded from this either). Something I shall be doing when I have recovered.
Chloe – You know how scary I can be J
Penny (nee Smith) – I remember the name I even remember the house but cannot visualise you. I’m only in Taunton !!!
Angelique –. If you read my earlier post’s when I was on FEC you may find some tips. I was fortunate not to catch anything and I know having children makes that difficult. (Just started having a cough now though). If it’s ok I would also like to ask you questions about your mastectomy.
Ange – Please let me know how you get on. What’s your treatment plan?.
Hayley – I have skimmed through your blog and you are also an amazing young lady and I love the a Tee –shirt!
Jane / Janice / Sue / Kendra – Good luck and keep positive. Let me know your treatment plans are.
Donna – Let me know how you get on fingers crossed it is’nt x

Best of luck to all of us

Sue
Xxx
Suejane.davies@googlemail.com

Op countdown and what a week ahead we've got!!

2009-10-10T11:13:00.033+01:00

Countdown started since confirmation of Op date. The 2 studies I am taking part in is as follows.
1. Quality of Life as an aid to decision making in breast reconstruction after mastectomy- filling out questionnaires pre-op, post op, follow ups and some post op Photos.
2. Trial of the effect of Tisseel on donor site seroma formation following latissimus dorsi breast reconstruction - In plain English - Tisseel is Tissue glue, Seroma is the liquid that develops after surgery which has to be drained, Latissimus dorsi is the type of reconstruction I'm having, tissue being brought from my back. This is to study the volume of seroma that is collected after the op between 2 groups. Group 1 normal finish up after surgery pipes and drains. Group 2 using Tissue glue to close the space created by surgery on my back. I won't know which group I will be in until I wake from surgery as the surgeon won't know until they open the envelope before he's starts.
Right, now for my week ahead. Back in March my sister Rachel was fed up with what was and has happened to our family with Cancer. Really not fair with Colin and myself having chemo at the same time in different parts of the country. Late one night, unable to sleep she started to write an email about it all then sent it to the This Morning (ITV) team, including the link to this blog. Forgot all about it, with everything that has been going on, until last Wednesday when she received a phone call from Ellie, a researcher on the show, who had been passed the email and had a look at my blog. She was impressed with my humour and how I'd been dealing with the chemo and everything and wanted to know if I would like to come and talk about my experience and my blog on the show. Rachel called me when I had got home from work and casually asked if I would mind talking about the last 6 months of my life to someone. Of course I wouldn't mind oh dear who else has been diagnosed ? She assured me no one we knew had been diagnosed and it would be infront of a few million people. I didn't get what she meant at all! Confused!!! (I know, doesn't take much) Then at the mention of Phil n Holly, the penny started to drop!!!. She told me about her earlier conversation with Ellie. Through both of our school girl giggles I replied I wouldn't mind at all. Rachel confirmed this had to be run by the producer first but we still kept laughing all evening. Even if this didn't happen I didn't mind as laughter is great therapy!
Thursday, I got a call as arranged from Ellie and she asked me questions about my blog and the last 6 months and asked me if I would like to come down to the studios - all expenses paid to discuss my blog with Phil and Holly. As it is Breast Cancer awareness month with Dr Chris they are doing a feature on this topic. Would I ----oh yes please !!! Would Holly like to come. No she has school and I had already made enquiries for her overnight displacement from home (Evil mom) I did re-think this yesterday and got back to Ellie and she confirmed this was still ok and school have been informed.
So Holly Rachel and myself are off to London on Monday, stay over in a lush hotel and being chauffeured to Studios Tuesday. Other guests that day are Ozzy, Joan Collins and Paloma Faith. Holly is so excited. Never mind Phil and Holly is Ozzy coming with Sharon !!!
Prior to this week my only distraction was my worry over Colin. I felt much better after seeing him last Sunday and he appears to be responding well to his 2 ops this week. Now however my last week at home is well exciting. Following on from our trip to London, Wednesday evening I am having some crystal healing, Thursday Tracie is arriving, Friday we are having a PINK Friday at work, Rachel and Laura are coming down and also going out to an evening BBQ . Saturday Kerri and Wendy are coming down so having a few beers, some lovely food and some more friends calling in as well !! Sunday I think we will go up and see the horses on Cothelstone hill weather permitting of course and chilax as have an early start on Monday!!! No time to fret and using this weekend to shop and pack for London and hospital for me (I really don't know what to wear). Outdoor school trip for Holly. Busy busy busy....

Surgery confirmed after a day at the BRI

2009-09-24T19:00:00.014+01:00

Yesterday I had an appointment with the Breast nurse and my surgeon in Bristol to discuss my options after my scan results taken last week. Shouldn't take long i thought and as per ususal nothing turned out as I expected.
When Holly woke up crying as she hadn't slept well I took that as a sign that the day was going to be challanging. I helped her calm down and even took her and her friend to school as her friend had phoned asking if she could get there early.
Driving to Bristol was non eventful, made a mental note to check Fearne Cottons on line black book of dating rules (you never know). I saw that where I could park free all day was now barriered with road works, saw the parking bay free but decided to carry on and turn around so I would be facing the right way home and of course it was all full when I drove back up leaving me no other choice then to use the NCP car park for an appointment that should take no more then 2 hours.
I get to the reception and my breast care nurse is waiting for me. What fantastic service I think. What Lorraine wanted was to say was last weeks scan results were unhelpful and if I didn't mind she had booked me in for a mammogram and ultra sound scan that morning as that department wasn't too busy shouldn't be too long and my consultant and her would wait and have our meeting afterwards. I laughed and said that was fine I hadn't got to worry about parking as in NCP but Lorraine said I shouldn't be long.
When I saw the number of women in the waiting room I didn't share her optimism and there I waited for nearly 3 hours to have 2 scans. The ultrasound scan couldn't find Cruella at all. I didn't get to see the mammogram xrays.

We ruled out a lumpectomy as we can't see anything, ruled out a wide local incision as they would have to take away one third of my breast and not guarantee that it would include Cruella and then have to have another op. So I am having a Mastectomy with an immediate reconstruction taken from the back as that has the best results for re establishing the blood supply to the moved tissue. 6 months later after the breast has settled they will tattoo a nipple and reduce my left breast to match my reconstructed breast. I have also agreed to take part in 2 studies which I will detail in another post.

Desicions made , the next available slot is October 19th. I confirmed that I can accept, then my surgeon leaves as waiting for me has made him nearly 2 hours late for his teaching lecture he was due at but stayed and waited to save me coming up to Bristol again. What can I say - Carling black label advert -

I mention to Lorraine that my feet have swollen up and on checking them she arranges for me to have a blood test whilst I am there. It is 3.30pm before I leave making it a 4 hour visit. When I process my car park ticket and machine confirms £10 please, my eyes start to water so I start to laugh at it all and make my way home...

Chemo R8 D13 Meeting with Nurse Specialist

2009-09-15T19:35:00.013+01:00

I still have tingling in my feet and fingers, dry throat and my eyes have started to water. My appetite is not great but finding it's way back. My bum doesn't hurt and that makes a huge difference. Not sure whether it is the knowledge that I have no more chemo but despite all this I feel really great.

I managed a boiled egg with toast and fruit salad for breakfast before making my way to Bristol to meet with my nurse specialist Lorraine. We chatted for a bit before she went through post surgery bra and clothes options and what I would need in hospital. Went through photos of my consultant surgeons work and methods he uses. Some of the pitfalls and post surgery care. I have also been asked if I would like to take part in 2 studies and have the literature to read this week to help me decide.

As for my operation we cannot decide which / how mine will be done until the results of tomorrow's scan has been discussed at their MDT meeting next Wednesday. My appointment is the same day and after today's meeting we are 95% certain I should be able to make a decision and get a surgery date for a few weeks later.

I am getting stronger every day now and looking forward to going into work as well. Having a shopping spree with Holly this weekend and a weekend in Burnahm on Sea with Jennifer and Gail next weekend providing of course I haven't been called in for surgery.....

Chemo round 8 day 9

2009-09-11T17:33:00.009+01:00

Thanks for your helpfull comments Gill.
Have started to feel a bit better today. Stayed up this morning to watch a DVD. It has been a hard week really. My Sister in Law Sandra rushed into Hospital Sat early morning. I have never felt so useless knowing I couldn't help with anything. She is home now resting...
My energy levels dropped on Sunday so have mostly been in bed since then. Feet and fingers are very tingly still. It hurts to type or write at the moment. I am using up my complan as don't really want to eat. I started using vaseline on my lips on Sunday and this prevented a crust forming on the corner of my mouth so I feel quite chuffed about that. My tongue is starting to feel normal so will start to taste food better - yippe and yes my bum hurts again...

I had a referral to Bristol Royal Infirmary confirmed on Monday for Wednesday with a surgeon consultant. I don't know what I was thinking of saying i would be ok on the train. Thank you Kath for taking me. It was very informative and I have an appointment with a Nurse Specialist there on Tuesday to go through reconstructions, MRI scan of breast Wednesday and meeting with Surgeon to confirm available options to me on the 23rd September. I'm impressed at the speed this is moving and all i know is that whatever is left of cruella has be operated on by 2nd week in October.
Will keep you posted

Chemo Round 8 Day 1

2009-09-02T20:11:00.006+01:00

Final round of chemo administered. Just got the nasty bit now that lasts for 14 daysish before I start to feel better. Tounge already lost it's colour so have started taking the difflam and my taste buds have changed. Already taking stuff to soften the bowel contents. Round 7 days 3 to 8 were spent mostly in bed and on the sofa so here goes..... but for the last time and I have started to take multi vits to help and in addition to the strawberry complan I now have a supply of banana and vanilla - Thanks Kerri for your contribution to this - I love you xx

Feeling a bit evil mannered at the moment. I feel exhusted and tired still which doesn't help. I have made a decision yesterday at my pre-assesment appt that I am not going to go for immediate reconstruction after my masectomy in October. This is mainly because the surgons will not be able to confirm if I will need to have radiotherapy until the standard removal of 4 lymph nodes to examine them for signs of cancerouse cells which is only done during surgery. The radiotherapy will effect the reconstructed breast and knowing my luck I will need it. The benifits will be that I will now be having a smaller operation on October giveing me a speedier recovery. I can choose to have my reconstruction done anytime after 6 months giving me time to restore my fitness levels and research and decide on the options open to me on reconstruction. Also this will all be done in Taunton. Lots of things to think about at the moment...

Chemo Round 7 Day 8

2009-08-20T17:42:00.010+01:00

What a week. Started going downhill Sunday really so it has been bed sofa and unavoidable trip to supermarket and post office so far. I feel so tired and I appreciate it is accumulative. My bum is really sore and I am struggling with doing anything other then resting, making food, resting and getting upset about clearing up! Holly's at her dad's this week so cabin fever isn't pleasant.
I can't seem to find banana flavour complan and strawberry is getting on my nerves abit but am drinking it as my appetite isn't great. Had a bit of a turn on Wednesday morning, came over all cold and sweaty and had to lie down. When I felt confident in standing up it was check I had turned off cooker as I had been making my porridge, unlock front door, grab phone and blue book with phone numbers and thermometer, in that order. During this time my sister in law Sandy called and I burst into tears. I would have thought that by round 7 I shouldn't experience new side effects and feeling vunerable was quite shaken by it. I phoned the Beacon Centre (our local cancer day unit) to share this new experience with them. As my temperature was ok I was doing everything right. Lying down and resting till it passed over. To avoid a posse from tearing down the M5 from Worcs I did call my friend Laura who came round and sat with me till I felt calmer, well longer then that really - Thank you Laura.
My temperature started creeping up last night so a call to Ward 9 to confirm I could take paracetamol with my other drugs I had taken was made. I decided not to take a z tab to sleep as I wanted to check my temperature again. I managed to get off to sleep and even though I woke up every 2 hours or so I was able to go back to sleep without struggling. This carried on right through to around midday today so feeling quite chuffed.
Feeling quite tearful and sorry for scaring you Phillipa but thank you and to Caroline for popping round.
I am really excited about our camping holiday in North Devon which starts Saturday with my sister, brother and their families. I am sure fresh sea air and more rest will help and I can always stay in bed all day there as well as I can here :-)

Chemo Round 7 Day 1 Penultimate session !!!

2009-08-12T16:32:00.005+01:00

How Cool is that I feel fab !!!Only one more session left and they cannot surprise me with any more !!!! Have to share a poem my friend Caroline sent me to keep my positivity up - Chemo is fab, chemo is fantastic. Sometimes it feels bad, sometimes drastic, however that little blighter will soon be gone and you will hear me singing this song, Chemo is fab, chemo is fantastic, "Bring it on", "Bring it on".
I know it hasn't been brilliant I have 6 weeks + before starting to feel better but with Cruella shrinking as well I can honestly say,"Aint been brilliant, it's not nice or pleasant in any way but has all been manageable". Thanks Daria and everyone else for your wonderful comments either by email, text, phone, facebook, face to face, cards, posters and presents. I cannot explain how or why but it all helps in my dark moments and I don't feel so alone.
Have managed a few days work as well which makes me feel useful but I'm not overdoing it but it is good seeing everyone and getting out for a few hours.
Some really good news today, my brother Colin emailed and he has had the ok to join us on our camping holiday in North Devon in 2weeks time and he's got onto the same camp site as us. I'm not sure who's more excited me, him or Holly, rr haven't spoken to Kerian yet :-)
Well still to get some complan in for next week. Drinking lots of water as my throat is dry but ready for next weeks rest..... 3 weeks to go before my last chemo session hooray !!!

Chemo Round 6 Day 16 - Cruella is still shrinking !!!

2009-08-07T10:18:00.003+01:00

I have had confirmed that Cruella has now shrunk from 21mm at the last ultrasound scan to 15mm. Way to go hey. I am pleased only 2 more chemo sessions to go starting next Wednesday. It is overshadowed by me having an Anal Fissure (tear) which is the cause of great discomfort and I am endeavoring to do all things associated with softening the contents of my bowel. Sometimes it works and sometimes it doesn't. It worked this morning so I am relieved.

I have been into work for a few hours Wednesday, few more on Thursday and going in this afternoon after my reflexology. Nothing strenuous, shredding and answering calls on reception. Enjoyed my time spent there and felt useful.

Feeling tired, (No change there) mouth getting back to normal which is a relief, all ready for next weeks chemo ....

Chemo Round 6 day 9

2009-07-30T20:57:00.006+01:00

My bloods have definitely dropped. Cry at the slightest thing and I am so tired. Doesn't help with an inflamed skin tag guarding my bowel entrance but Dr has prescribed Naproxen so have fingers crossed.
As I am not well enough to drive I hitched a lift to Cheltenham station with Colin and Sandra as Sandra had got Colin an appointment there today. I stayed in bed all afternoon, went to the Docs for my drugs, tried to eat and went back to bed. I feel so exhausted. Holly's been out shopping in Street with the Bebbingtons. Thanks guys.
I have just had an update from Colin. He has had his first of 5 doses of radiotherapy today at Cheltenham. This is good and well done Sandra for not accepting the 1st appt of next Wednesday :-)

Chemo Round 6 Day 7

2009-07-28T21:20:00.002+01:00

Side effects has not been severe as last time however they have been present. Muscle ache and mouth being sore are the worst. Constantly using the mouthwash since last week has helped and ibuprofen are keeping things at bay.

For those of you who know my brother Colin and are aware that he has 2ndry kidney cancer in his lungs, sadly more nodules have been discovered in his brain after a scan. I am in Worcester at the moment but thankfully he now has an appointment with specialist on Thursday in Cheltenham. Providing I can grab a good nights sleep and ensure i am ok I hope to go home soon now. Whilst i know i have to look after myself i couldnt leave until the appointment got confirmed which it did today.

Sue

Chemo Round 6 Day 2

2009-07-23T10:49:00.006+01:00

Yesterday's chemo went through without any hitches this time. I suspect this was because they have reduced the dosage by 10% to ease the severe side effects I had last time. Slept through the night with the help of a z tab but had to be done. Feel tired today still so just chilling.

Pat have uploaded a picture just for you taken at the end of June with me wearing Dolly. I look really well apart from the bags under my eyes and it's quite deceptive as I don't feel as well as I look. I delayed my chemo for a week to go to London for Leina's brothers wedding and met up with Cathy & Polly on the Sunday. Had a fabulous weekend which has broke up the recent routines of needles, scans and such like. I'll place one with my bandana on next blog.

Going to Hereford the weekend to relax with Leina and Paul can't wait and fingers crossed for minimilistic side effects that are due to start Tuesday -but am all prepared !!

Chemo Round 5 Update

2009-07-21T21:10:00.003+01:00

Had pre assessment today and bloods are ok to proceed with round 6 tomorrow. The breast care nurse appeared for my appointment today ummm.... Due to the severe side effects I experienced they are going to reduce the dosage by 10% and all systems go for tomorrow. I have ice, ice cream, drugs, straws, tinned soup and mouth wash which I have already started to take. Any change I have been told to phone in no matter how trivial apart from if I stubb my toe of course. I should be more aware this time I suppose and I've made it clear I do not want to go to MAU again so fingers crossed.

I have ultra sound scan 5th August, pre assessment for round 7 11th August and first meeting with surgeon on 13th August to discuss surgery options. All go at the moment.

Chemo Round 5 Day 13

2009-07-13T16:56:00.018+01:00

Last Sunday I weighed 13st 2lb. This morning I was 12st 8lb. There has to be a plus side.
I got worse before I got better and because I didn't want to eat or drink much I didn't want to get out of bed either. Crushed ice (cheers Wendy ) before food helped and ice cream.
Unbeknown to me, Lynne was not happy leaving me on Friday so had confirmed my current state of health to my sis and picked her and Laura up from train station Friday morning.

Rachel took charge, phoned Dr again, applyed for Mobility badge for car, booked campsite for August holiday and took me off to hospital for brain scan. I was so glad she was here. Being hungry and thirsty because you don't want to eat is ok but when you can't because of scan is worse. I just started crying again in waiting room, tired hungry and thirsty. Scan complete and drank water mix of salt and sugar. I couldn't taste a thing. Tea was lovely, Laura made mashed potatoe just for me - Thanks Laura.

Saturday afternoon Kerri and Wendy turned up which was lovely. I did go back to bed for a bit and it was lovely hearing all the laughter going on as the Wii Fit was put through it's paces.

My temperature started to go up again on later on but fully armed with Paracetamol soon had this back under control and downed some food. Ate more as i was picking so that worked out well thanks Kerri and Wendy :-)

I am starting to feel better now, my mouth still hurts but is starting to heal so feel there is an end in sight. The Last 7 days have been the worst since I started chemo and Round 6 is due to start next wednesday. Previously I have been back at work this point in cycle. Today I'm chuffed I got up and ate something!!!

Chemo Round 5 day 7 - No Pain no gain !!

2009-07-08T10:40:00.002+01:00

All I can say is what a turn around from breezing through managing side effects of the 1st 4 rounds then bang it it me like a brick. Tingly fingers and muscle ache like I've never experienced before started Sunday night. Mouth on fire and hadn't apprecicated my termperature was rising. Lynne took one look at me and was on the phone to the oncology then GP's before taking me to the Medical Admissions Units. This was not a pleasant experience and wont rush to go there again but I will take that up with the hospital. My temperature started to come down after being given paracetamol. Hey we all know that logic but logic went out of the window. I didn't get anything for my mouth until I was about to leave and currently I'm loving porridge!!!
I am feeling loads better then I was , shocked at how ill I dipped to. I have no energy, have to rest after eating porridge !! Lynnes making sure I keep fed and hydrated as because of my mouth i don't want anything. Getting back my sense of humour. Plans for Round 6 have now been laid. Paracetamol, iboprofen, teach Holly to make Porridge and she loved Dinner at the bebbingtons. Thank you guys !!!

Still not sleeping properly yet telling me my organs are still working overtime to detoxify the drugs through my system. My hair groweth is getting stronger which I find bizarre. Born again blonde on her way :-)

Chemo Reaction Update

2009-07-06T17:27:00.003+01:00

Hi everyone, well Lynne thought she was gonna have a nice week off visiting Sue! Ha ha, Sue has other ideas!! Ok, well maybe not Sue!

This is just to let you all know that Sue hasn't been feeling very well, she's suffered with some side effects of the new chemo drugs. (Sue will fill you in on the technical details)

Lynne took Sue into Hospital earlier this afternoon as her temperature had shot up and she was feeling more wierd than normal!

As ever, getting her priorities in order, Sue asked me to update the blog to let you all know that she's ok and will be back informing you of all the gory details when she's feeling a bit better.

We'll be in touch very soon to let you all know how its going.

Rachel xx

Chemo Round 5

2009-07-01T09:03:00.023+01:00

I know I haven't been updating the blog recently and sorry to those folks who rely on this to see how I am doing. The last 3 weeks have gone really quickly. Yes I have had a 4 week cycle again as Holly and I were invited to London for a wedding and also took the opportunity to catch up with some lovely friends.
An additional side effect of a burning sensation in my mouth added to the usual tiredness and changes in my bowel movements but again I have really breezed through round 4. Even went into work for over a week as well. Took time out in Torquay for enforced rest whilst Holly was on a school trip and made me realised how much I am NOT resting. Ooh no surprise there then :-)

So Monday I was buzzing. I had a faboulous weekend and gave myself 3 things to do when I have recovered from Chemo and my concentration levels increase. My pre assesment appt would confirm only 2 more cycles left and I was going to book our ferry and campsite to France for the end of the Summer. Nope this was all taken away from me Tues morning and I was gutted.
It started off wrong by me thinking I was 20 minutes late for my appointment when in fact i was 1 hour 10 mins early. Wrang work then settled down. Clinic was running late and I was seen just before 12pm by the Specialist Chemo Nurse. My bloods ticked all the boxes, side effects managable, she checked my mouth which had cleared up all ready to go for chemo. I have a concern about my short term memory and after disccussing this with her she felt it best to see the Dr and off she went. Dr arrvied with my notes as I havent had the offical results of my ultrasound scan . Cruella has reduced from 31mm to 21mm :-) . Repeated my earlier conversation on my concerns and Dr reassured me that this was common however would book me a CT Scan on my Brain. Also she had some news on my Treatment plan and that due to my age and origional size of Tumour that they have decided to change my drugs from FEC to Docetaxel (Taxotere). This is to increase the schrinkage for a cleaner masectomy. oh and yes that there would be 4 more courses starting the next day. She went to get an information leaflet for me to read and also made it clear that I didnt have to change but this would following NICE guidlings and positive results on other patients. I couldnt hold it in I cried. Additional side effects to be warned about are fluid retention particular in the feet, tingling in the fingers and muscle ache. I felt so dissappointed and we went through my chemo planner and happy to move the last chemo cycle to accomodate holiday plans. Off I went , got to work for 1pmish after scraping the side of Bluebell on the post. I was desperate for my refreshing cold sparkly drink so went to pop across the road mut Margie could see I was still traumatised and came with me to the stairs and off I went again. I hadn't had a trauma for ages but soon calmed down and reassured her I wanted to attend the pm meeting with my new team and was desperate for food and drink.
Before I left for home Kath turned round and sasked if I wanted her to come with me wednesday as there were still some clarity required and also pointout that the mornings events hadn't been handled well as I had no idea I was going to discuss a change of treatment and should have had someone with me. I accepted her offer of help. (Dont faint) and Kath called 9am and after a chat off we went.
First plan was to speak to the Breast Care Nusre - non available or Consultants so we went to the Beacon Day Centre (new oncology centre) and advised the Nurse what had happed and I need further clarity from Consultant before proceeding with the Chemo. Thankfully we were able to see the same Dr who not only apologised but advised she complained to her manager about yesterday's event. Not just me they had too busy a clinic and she felt she couldn't do her job the way she would have liked. We went through the treatment plan again and Kath also pointed out that being a single parent this impacts on my home life in terms of arranging support and taking this plan into September where Holly starts big school and yes holidays can always be rearranged but there would be dissappointment not just for me. We also agreed that in future I would not come to my Pre Assesment Appointments by myself. I have had Breast Care nurse before this didn't happen. Dr suggested we go and have a think and chat and come back and let the Nurse know what we had decided.
We did do this and discussed the other options and I felt comfortable taking the opportunity of changing the drugs. I felt I had now reviewed the choice I had and not rushed into things. Showed Kath where she could find me later, and got settled into be hooked and drugged up.
Firstly I had to have a steriod injection and left for half an hour - oh joy. Ray & Denise were there fromn the CAFE support group I go to and the lady I was waiting with yesterday the time flew. then my drugs finally arrived and the infusion started, Nurse Lorna handed me the buzzer in case I needed anything. This was new, they had never done that before. Well 10 minutes in and I could feel heat moving up to my face from my neck and I was not able to breath properly. Initialy I thought I was imagining it as I knew I was still traumatised as I call it. Ray called over , are you alright no i don't think I am. Have you pressed your orange button. No but did. Lorna came back along with 4 other nurses, my tears flowed. They stopped the infusion, pulled curtains round and passed me the oxygen mask. I calmed down and they explained that I had had a reaction to the drug and would have to wait now and take my obs and get the dr to see me. Got injected with someting couldnt rememer what they told me. Blood pressure ok, pulse ok, Dr breezed in looked at me at went out again!! Told this to Lorna and she said that was all she needed to do and that she was restarting my drug infusion but slower and stayed with me. When I had got past the point where I had reacted and all was fine she placed it on the same speed as before . Kath turned up with Karen (work colleague - cancer manager at trust) I started crying again as I told them what had happened. Karen had brought me a beautiful posie of flowers as well.
The rest of the session went by uneventful, Felt really sleepy but I had been injected with piriton, I thanked Ray for making me realise I wasn't imagining the reaction I was having. After getting my next appointments sorted I was about to call Kath and she turned up to take me home. What a day and it wasn't over.
Holly, bitterly dissappointed that I have decided we are not going to France ( KIDS !!) and asked where in this country would she like to go, decided to take herself off to the library to get the next book in the series she is reading, came back in tears as she had met a couple of school friends and the lad through a ball at her but it hit the back of her head and not being a soft ball was a hard ball. So I had to be nurse for a bit :-) She's ok now , a lump has developed and she can take this up with Jake today at school.
I have had a good night sleep waking up before 6am and feel quite chipper. Watch this space .....

Chemo Round 4 Day 7 - Cruella is Shrinking

2009-06-10T18:47:00.004+01:00

I feel so tired but completetly elated that the ultrasound scan today confirms that Cruella has shrunk in size by 9mmish and the density has also reduced. I celebrated with an Iced bun and bought a Jam doughnut round !! (Holly ate hers without licking her lips). I feel so happy and lucky.

I suspect now that I will stay on the origional treatment plan of 6 cycles which means only 2 more to go. Won't think about surgery yet still a long way off .

Still feeling incredibly tired and managed a power nap today so feel quite chuffed.
Big smiles all round :-)

Chemo Round 4 Day 4 am

2009-06-06T07:36:00.001+01:00

I am feeling much better this morning. Could have done with a bit more sleep but feel releaxed and pottering around the house tidying ect. Am planning a power nap before taking myself off to the pictures, Holly's at her dads and I have some friends arriving later.

My reflexlogy yesterday was wonderfull. Felt tearfull on way over , feeling tired and bored with all this now but reminded myself that I had managed 3 rounds , doing 4 at the moment and only 2 left to go (providing Cruella shrinks) and pulled mysellf together. Fell asleep in reflexlogy and a wonderfull session at meditation and felt much better about everything.

Still forgetting to take tablets which is abit annoying but at lease it was only one and not days this time.
Thanks for my messages Kerri amd Leina and will be in touch soon.
Sue xxx

Chemo Round 4 day 2

2009-06-04T14:04:00.004+01:00

Well following last night's vomiting debut, my dinner decided to follow suit as well even though I had taken the anti sickness tablets. Went to bed pretty early and called hospital but just to let them know more then anything else. Checked my temperature which was ok. My friends was staying over last night so felt comfortable that I could go to hospital if necessary without worrying about waking the Bebbs up for an impromptu stopover so holly didn't wake up in an empty house.

Breakfast has stayed down and so far so has lunch so I think I had drank too much water for my body to absorb hence the rejection and it felt the same way about my dinner and the anti sickness tabs didn't stand a chance. Slept well though till gone 7am and still tired today but just just relaxing. So far so good ...

Chemo round 4 part 2

2009-06-03T19:28:00.002+01:00

Well I was doing good. The experience was ok. Met some more lovely people and didnt cry. Still can't look though. Drank loads of water but sadly brought it all up. Didnt think i'd need antisickness tabs for water. Have kept my tea down so far but feel really crap and off to bed.
Holly doesnt feel to well either so I didn't push for her to go to scouts which has saved me a trip.

Off to bed now will catch up tomorrow

sue

Chemo round 4 Day 1

2009-06-02T20:53:00.006+01:00

Well my pre assesment appointment yesterday was promising. My bloods are ok so I get the thumbs up for chemo round 4 (ok i snuck in an extra week as I went to Cornwall). Side effects have been manageable. It was not because I forgot to take steriods that I didnt have any mouth ulcers I've been assured by my Oncoolgy Dr that the chemo causes that (Oh well).

I think Cruella is shrinking as I cannot feel her through my bra any more and the Doc had to look hard for her yesterday as well. Fingers crossed that the Ultrasound scan next wednesday confirms the same. That would be great
My friend Bianca is doing the Race for life today at Silverstone. She has never done this before and is purely motivated by what is happening to me even getting her hair shaved when I had to do mine as it was falling out. If you havn't sponsored anyone yet and want to http://www.raceforlifesponsorme.org/biancamcgarry and don't forget to gift aid your donation.
I am going to take the DS and play Suduko today to take my mind off needles. Will be in the new Beacon Centre so not as cramped as previous visits. umm will let you know if this works

Sue xx

Chemo Round 3 Day 12

2009-05-18T07:50:00.007+01:00

Well last week was a mixture of feeling great to feeling awful. Monday morning woke up after a good nights sleep and felt great. Tuesday felt even better. I'm doing work from home round my appointments. Wednesday, as I was working from home it came over me like a wave feeling nauseous. Shut down my laptop and took myself off to the sofa and watched a DVD and dozed before my afternoon appointment that day. Felt better in the evening but Thursday felt terrible again. Phoned hospital as didn't know whether to take my anti sickness drugs and or steroids to help. Before the nurse phoned back, I'd been to the Drs and took myself back off to bed after having a slice of toast. Anyway the confirmed that at day 8 I should only take the anti sickness tablets and call Friday if I felt no better. I didn't get up till 2pm and managed to get in at the hairdressers to have a fringe put in Dolly (wig) increasing this weeks of appointments to 9! Friday I felt fine again. A bit tired but not feeling sick hooray, in time for the weekend where Sarah and Cathy were coming round and we had a lovely time having foot spa, and giving feet hands and face a makeover with fabulous food and the odd glass of wine.

This morning been awake since gone 5am but feeling ok. Mouth has done well this round and feels normal , no ulcer. Just tiredness and feeling sick so not too bad really. Planning to work again this week around 2 appointments I have but still taking it easy.Got to save my energy for Cornwall next week he he. :-)

Chemo Round 3 day 5

2009-05-10T20:09:00.020+01:00

Well my mouth is still ok, I'm not ravenous like this time last cycle, just incredibly tired.

Have had a lovely weekend starting with Lynne calling in who ended up cooking our tea whilst I had a nap as couldn't stop yawning. I did some aromatherapy massage and I got my crystals out. We both had the best night sleep for a long time but not enough to stop me going back to bed Saturday, after checking if there was any Rhubarb left at our local pick your own and there wasn't. I'm wondering if I'm resting too much as I am not exercising much apart from what I do on the Wii fit (ok walking as well). With that in mind I accepted an invite to my friends dads 70th Birthday party Saturday night. Holly even volunteered to help out with decorating the hall etc. Thanks Laura and Alex, Holly thoroughly enjoyed herself and when we both turned up later in the evening it was Sue Holly and friends enjoying themselves and I lost the Sue who is living with breast cancer.

After a restless night sleep, I carried on this thought of Sue and Holly doing their thing and took us off orienteering. We didn't get lost after finding the starting point and thoroughly enjoyed the walk. Stopped off at a car boot sale on the way back. Holly groaned but happily took part in the purchases we made. Came back had dinner. Nige came round with some shopping. I am useless at asking for help but when Anne put's you in a corner with "We're off to Asda do you want anything?" it works and really appreciated it even if I didnt have the main ingredient for Rhubarb Crumble!!

Every day next week I have an appointment with 2 appts on Friday. Already I am feeling anxiety over it all. Thankfully not having a midday sleep and taking part in some excercise today will induce a good nights sleep. Watch this space...

Chemo Round 3 part 2 !!

2009-05-07T21:07:00.015+01:00

Thanks for that update Rachel.
I knew it was going to be a long day Wednesday. Tuesday started off ok. Went to work before going to CAFE group. Had a neck and shoulder massage and some crystal healing before getting to the Hospital for a blood test and pre assessment appointment. Was'nt kept waiting long and was called in to see the Oncology Dr. He asked me what I understood about the Ultra Scan that I had last week. I confirmed that I knew that Cruella had'nt grown but not shrunk either and they may change my drug combination extending my chemo by another 6 weeks. He agreed with this but advised that the decision on changing the drugs would not be made until after cycle 4 and would like to examine Cruella still. I went to the bed and took my top off and before I could take off my bra he asked what I was doing with a rock in there. I was gobsmacked as this was a rose quartz that was placed when I had my crystal healing and couldnt believe I had walked out with it and all had a giggle over it. We touched the subject of surgery as I need to know timings from a practical point. It will be after chemo and likely to be September. He mentioned that I could do with loosing weight for reconstruction but I dont want to know the details yet. This appointment didn't take long, only an hour on the car park.

Decided that I would walk to the hospital Wednesday, got their earlier to look round the new cancer centre that is opening on Monday. Went off to have my chemo, my appt was at 11.30 but took an hour before I even got hooked up. Yes I looked away and cried. I was left for ages before they brought in my drugs. They didnt loose my lunch this time. They were not ready for me and on checking they were not expecting me till 2pm. It was 1.45 pm before I got out the room. As I had another appt at 3 had agreed to meet up with a friend who was with her mother having her first chemo at 2. I loitered till about 2:45pm and carried on chatting in the waiting room with the other people that were there. Then I went off to my counselling appt and more tears flowed. Got out around 4.15 and decided to walk into town and catch a taxi or bus as was knakered but then one of our senior team was leaving the hospital at the same time and gave me a lift home. Bonus !!

Felt absolutely knackered and tearfull when i got in. Holly was not feeling well either. She's been with her Dad the weekend and we got told Wednesday evening that her sister has chicken pox so I think she is fighting that breaking out. Decided only fish and chips would do and that is what we had. I didnt reaslise till this morning that I hadnt taken my anti sickness tablets but wasnt feeling sick or anything.
Didnt sleep well last night. Got Holly home as well today as she's still poorly. Got back to bed around 12 and didnt get up till 2.30pm. Wasnt hungry this morning and didnt eat until I woke up this afternoon. Left most my tea as well but have decided not to take my anti sickness tablets as still not feeling sick. As advised by at the Dr earlier I have started to take Senna now rather then wait to be consitpated.

Also my next Chemo appt is going to be moved from the 27th May to after my holiday in Cornwall, 3rd June. I did say we could come up for the day if they change the date as it was actually on Holly's birthday but the team are happy to let me delay the chemo for a week. I'm chuffed i'm not interrupting our holiday but not chuffed by extending my treatment but then whats another week and lets hope it's not another 6 weeks that will get added if my drugs are changed.

Chemo Round 3 – Day 1

2009-05-06T20:11:00.002+01:00

Sue ok but not feeling like writing anything much. So you got me here today, on Sue’s behalf, I’ll try and keep it brief.

Ok, Sue went and had a look round the new Cancer Centre today, and was very impressed with it all. I know it sounds wrong, but she’s looking forward to using it.

Bit of a mix up with her Chemo appointment time this week, her card said 11.30, but they had her booked in for 2.30, oops!!, so she ended up being there quite a bit longer than expected, which had not been good for her today as she was already not feeling particularly good.

Whilst waiting for her appointment with the counsellor, Sue met up and chatted with some people that she’d met previously, who are also having treatment.

Sue felt the counselling session went well and has realised that she’s holding onto a lot of stuff and has worked out a programme with the counsellor to help her deal with her issues.

As she left the hospital to walk into town to get a taxi, a member of the senior management team drove past and gave her a much need lift home.

Sue wanted to say that although she’s feeling very weepy, she’s doing ok and not to worry and will be reporting as normal soon.

Rachel x

It's Ok to Cry

2009-04-29T20:10:00.007+01:00

I do know that but not over nothing. Must be me hormones....

Tuesday I found it a real effort to go to the CAFE group but I was motivated by knowing I would feel better for it. When I got back I had a card in the post from Rachel of the painting we saw in the Birmingham Museum January of Monte Civetta from Lake Alleghe by Elija Walton. This made me estatic as when I use meditation and mountains are mentioned this is what I was visulising before I had even seen it. The painiting in the museum is one awsome sight.

I had a Ultra sound scan Wednesday and Cruella hasn't grown but hasn't shrunk either. Will know more on Tuesday when I go for my blood test and pre assement appointment as to what changes may be made. Either change of drugs or surgery brought forward. I can't deal with the surgery details at the moment only the timings for practical reasons.

It was good when I got into work. It is lovely to see everyone and I managed some work as well. A small bit of normality surrounding the Hospital and Dr's appointments. Can tell when I start to feel better as I even bought a bottle of wine on my Asda trip and had a glass (ok 2 ) with dinner. Will have managed 2 and half days this week!

I have a mouth ulcer that is annoying me and is not responding to Anbesol so I am going to ring the Dr's to see if they can prescribe anything stronger. Any ideas welcome.

I am really looking forward to the weekend. Holly is off to her dad's for the weekend but Rachel and Laura are coming down. Saturday we are just staying here and chilling, may get Laura to finish the cleaning patio and mow the lawn. well ok it's worth a try :-) Sunday we are going on a day trip to North Devon so the sun better come out to play.
Hope everyone has a lovely weekend like I'm going to , have a good un

Sue

Summary of Chemo Round 2

2009-04-27T17:09:00.007+01:00

Well I'm on Round 2 Day 12. I have noticed a difference from day 9 (Friday) onwards with tiredness and my nose has started to bleed, spots but bleeding all the same and as it's my blood I found the first episode traumatic. Please note the use of the word FIRST as I am cool with it now however I did phone the Hospital and burst out crying to them that my nose was bleeding but not horrendously and wanted to let them know and confirm what I would need to do.

I am sleeping ok now but some mornings I wake at 6am but then I managed to back to sleep Sunday morning and didnt get up till 9am. I am going to back to bed around 11.30 am and getting up around 1:30 - 2pmish. I dont like being in bed when Holly comes home from school.

Kerri came down from Worcester Saturday afternoon, laden with all things healthy (including Red wine as in small doses...) We also went into town and I bought another beanie hat and some more scarves. Kerri also bought me a lovely hat which I wore Sunday afternoon when I took Holly to her St Georges day parade with the Scout and Guide movement. We finished off the evening with a spot of Wii fit , and a chinese takeaway with Vern who popped in on his way back to Brackly from Minehead.

Today I was awake at 6am so started reading a book kerri brought with her called The Breast Cancer Book which i am finding very interesting. I have a similar outlook and humour as the author. Holly came in and joined me around 7.15am so we chatted for a while which was lovely. I had said to her I might not be up and she seemed pleased I was awake but at least didn't insist I take her to school.

My nose keeps spotting blood or clear liquid, my right cheek has a red patch on it with some spot type lumps and I felt better after my mid morning nap. I am managing to sleep without Z tabs which I feel better about. I am starting to remember my dreams at the moment, they had been quite for a while now but have started up again so will start to write them down.

All in all round 2 again was managable, more tired from day 9. I understand my bloods are at their lowest but was amazed at the difference and how quickly the changes were. I had been ravenous from Sunday , then Friday morning woke up feeling great and within 2 hours I had lost my appetite, nose bleeds, tearfullness and more tired. How quickly it all changed was frightning on it's own.

I am preparing to work this week and already arranging some holistic care for diffusing the anxiety and trauma of blood tests and chemo next week. Time flies...

Life is for Living

2009-04-22T16:24:00.012+01:00

I keep having these wonderful powerful thoughts even when I successfully have an afternoon nap. I will have to start writing them down but on their own you'll think I'm bonkers. Ok you already think that!

On Monday I started an experiment. I have shaved my legs and we are going to see how quickly the hair grows back. Today is Wednesday and still no stubble. I have had to trim my finger nails and my hair on my head is still falling out so this doesn't make too much sense. Scientists out there answers on a postcard please... .

Tuesday at the CAFE group I had a foot massage and some reiki again. Always come away feeling relaxed. Popped into work quickly after lunch and explaining how meditation and Rekie works really well for me, Sara asked if I stayed quiet enough for meditation , have to admit i do surpise myself sometimes :-)

This morning started out with the Marmite jar jumping out at Holly and smashing everywhere. Luckily she didn't hurt herself and her stomach ache went away. Finished off today being at the cimema to see 17 Again.

Good news received about Colin, he is having limited side effects on his HD IL-2 treatment he started on Monday at The Christie in Manchester for his cancer. I am so relieved although I do appreciate like myself these are early days. Good news all the same.

The weird feeling in my mouth has disappeared, the smelly eruptions are still happening, still feeling tired and incredibly hungry and looks like I shall win the title for the first in our family to be bald...

Over 1 third of the way through my chemo treatment !

2009-04-20T22:10:00.002+01:00

That really makes me feel good saying that. I still have bruises from chemo day last week and still going through the smelly C&D and weird feeling in my mouth has started.

Holly came back Friday, she’d had a fabulous time with her dad and family. She was really happy, took her younger sister and brother into her room for some snatched play time. She looked away initially when I changed to my wig but then couldn’t stop her playing with the scarves on my head. We had a good chat and watched a DVD before Pat & Co arrived for the weekend. I decided to stay at home Saturday as was tired. Holly went out with the rest of them to Combe Martin and had a lovely day. Spent Sunday morning out at Chothlestone Hill where we found the horses. I could have stayed there all day although I couldn’t believe how hungry I got. I couldn’t wait for my dinner when I got home and ate a load of crap then a big pate of Sunday dinner on top. I was starving. This led to a 2 hour or more marathon sleep so didn’t do DVD with Holly.

When Holly went to bed I had the old “I’m no feeling too well”. Anxiety about going to school the next day. Normally I would let her get in bed with me but I have such smelly eruptions at the moment she agreed to go to her own bed.

This morning she was no better, managed to get her to bring us up both a slice of toast and me a cup of Lemon Green Tea and there we were having breakfast in bed. I encouraged her to eat her toast and by the time I had had a shower and got ready for my Dr’s appt, she was still crying and her friends turned up at the door to walk to school with her. This usually stops the visual display of her not being well, but I still walked up to school with them sporting my beanie hat and scarf and had a word with Mr J. She came back happy but still poorly. Chirpy enough to tell me about her friend at school finding my blog, chirpy enough to check that I had worn my wig when her other friend had seen me in Asda, chirpy enough to give me a manicure and pedicure outside in the garden and show me her skipping skills, chirpy enough to go swimming….... umm apart from balding head, C&D, weird feeling in my mouth, anxiety about the unknown, almost normal…...

Chemo Round 2 day 1.

2009-04-15T22:37:00.001+01:00

Oddly but thankfully, I went back to sleep this morning after waking up at too early again. Also I was not feeling anxious either. I must bring meditation into my regular routine. Went to work this morning before making my way to MPH. I wasn’t thinking of needles I was thinking of playing with scarves with Linda from the SCC. I was calm when I went in, there was a bit of wait due to the new computer system but I chatted to patients and relatives in the waiting room.

My nurse called me and off I went into a different room this time. She had another clinical assistant with her and I was taken to the end of the room where there was a bed and chair but quite spacious. They pulled a cubical curtain across and started asking me how I was feeling and want they could do to help diffuse the anxiety I displayed on round 1. They mentioned if I had asked for some medication, can’t remember the drug name, I told them the difference I felt after the complementary therapy I had received at the CAFÉ (Cancer Aid for Everyone) and that I was still feeling ok and wasn’t feeling too traumatised. She confirmed she was going to use my left hand and arranged the infusion machine accordingly. I asked if I could place my arm and pillow on the arm of the chair and this was ok. I was on a roll, feeling relaxed, everything to my left, I could look right what more could I ask for.

The nurse and assistant went off and came back after quite a while with another nurse that has to be present when I confirm my name and date of birth. At this point Linda pops her head through the door and waves at me. Great she’s found me and will come back when I’m less popular.

I didn’t see any of the drugs, they were covered in the tray. I plugged my ipod in and looked right. The nurse and assistant were brilliant, I didn’t even jump with the prick, I felt relieved. They were doing what ever it was they had to do but nurse voiced concern over having pricked a weak vein and the impact this was going to have on my treatment and asked me If I was ok she would prefer to have a stronger vein. I was feeling brave and said I was fine but I couldn’t believe it. Them upstairs, can see I’m not as traumatised as before, and I’ve diffused the anxiety successfully without drugs, but still want to keep me on my toes. Well I showed them and braved it out!!!

So two pricks on my hand it was, lovely chat followed as the syringes were administered and then it was on the machine. I was asked if I wanted lunch and I hadn’t eaten since breakfast, time was getting on so said yes please. I could see a couple of the other patients in the room and was inspired by another lady receiving an infusion, using the hand with the cannular in to complete her puzzle book. I was feeling brave, I lifted the cloth covering mine. umm not too bad, put it back down again. I built up my courage and started to move my fingers, umm not too bad. Getting super brave now, took off the cotton wool taped to 1st prick and moved fingers again. Whey hey well done me! This left me smiling. My nurse had changed, it was Suzanne from last time and she was pleased to see me not so traumatised. The only complaint I had was that my lunch hadn’t arrived and I was starting to feel shaky. Bless although the other HCA had chased it up, Suzanne found that the volunteer had placed it in the fridge so relief came and so did Linda. I checked it was ok to say there in the chair and eat my lunch and for Linda to show me how to best use the scarves. The HCA and other patient joined in and I even got a sale for MPH as she liked what I had brought with me and we had fun. All done, bought another scarf and beanie hat, as Linda had kindly returned the wig for me that I’m not keeping and took my payment and delivery note to the wig lady whilst I was eating my lunch. I just popped over to check all ok and it was and I drove myself home!

Mouth started to water not too bad, had a sleep, need to work out how I can sleep in the afternoon but not get to sleep at night time. Karen called round on way home, I shed a few tears but not from self pity this time, just felt tearful. Had a lovely chat made some tea and ate it and kept it down. Currently don’t feel to bad…

Holly comes home Friday, called Pat who reminded me I am 1/3 of the way through my treatment plan. This sounds good and doesn’t time fly.

Sue

Twas night before chemo round 2...

2009-04-15T08:23:00.002+01:00

And the house definitely quiet as Holly at her dad’s.

Well what a day. My anxiousness has been building up since Thursday. Not sure whether this was the hair starting to fall out or the changes at work but hey I can’t ignore how I’m feeling even if I don’t understand why.

Have had a lovely Easter weekend spent at home with visitors dropping by. Laura lou arrived Wednesday, Lynne stayed over Thursday, Penny and Philip called in on Saturday and Sarah called in and stayed over Sunday night. Very relaxing, got some jobs done, courtesy of Laura lou. Went to see the ponies on the Quantocks Monday. Strangely I had afternoon naps on Sunday and Monday. I find this strange as I can’t get to sleep at night but happily cat nap in the afternoons. Having discussed this dilemma I agree with possible cause being the anxiety I feel is draining my energy therefore making me tired.

I went to work wearing my wig. It was nothing to worry about. It’s just a change.
The anxiety I felt this morning was diffused by the time I left the Somerset Cancer Aid for Everyone (CAFÉ). I was met by the lady who sat with me on my 1st round of chemo (Linda) and she recounted that day to the others at the drop in and we were all laughing. I then had a neck and shoulder massage, healing and meditation. Linda also arranged to come and find me tomorrow at the hospital and we will try some head scarves on and she will show me how to do this. I would never believe I could write this but I am looking forward to my chemo session tomorrow. It is going to be easier then my brother Colin’s chemo, I get a personal head dresser into the bargain. I have also bought a eye gel pad to use whilst I’m being pricked. I came out feeling pretty chipper and went back to work feeling totally relaxed. If ever I needed evidence about relaxation techniques diffusing anxiety attacks I need look no further. I have to bring this into my daily routine.

I went to the hospital this afternoon for my blood tests and pre-assment interview. Whilst in the oncology department I met a lady there whom I met at CAFÉ. We have had a chat. She has finished her chemo and she looks well. Will I be able to do better? I was called in to my tests and off I went looking for a powerful distraction as needles in my body causes me a problem. Extraction of blood was not too traumatic. I had fired of a line of questions to the nurse and had to let her know she could stop now the blood extraction had been completed. When I came out there was another couple from the café group. Seemed like a mini reunion. I didn’t have to wait for long and got called in to be seen by the pharmacist. We summarised my side effects -- Orange pee, nausea, fatigue, cold seats, hot flushes, constipation, diarreah, constipation, foul taste in my mouth, horrible smells escaping from my bum, enflamed skin stag on guard on the bowel exit, tiredness but all manageable and finally hair falling out. I know this is going to get accumulatively worse but I feel I have completed first round successfully. My bloods have dropped from the bench mark tests taken before I started my chemo, but it is within their ranges.
I’m pleased that I can go through to round to 2.
oh well here goes...