Seasons Greetings

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!

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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 !!!

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!!

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

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

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

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

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!

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

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!!!

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

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!

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

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

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

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

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

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

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

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

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

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

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

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