Saturday, 29 December 2012

Happy New Year everyone xxx

I had the minor op as planned.  I had a daft start to the day by turning up at the wrong place and had to walk over to the other side of the hospital to get the the Day Surgery unit.  I was out of breath  but on time and first on the list :-)  I was back on the ward for 10:15 and home in bed by 13:30pm. 
I have started my homoeopathic treatment and back on my other holistic medicine.  My anaemic symptoms are becoming less acute apart from the breathlessness which has cheered me up no end.  My next onc appt is Jan 15th with my homoeopathic appt a week later.

On Christmas Eve Eve , we managed a toast to Colin and the rest of my family upstairs and finished the day off at a local carol service.  Christmas day was spent in our PJ's and I rested all day whilst Rachel Laura and Holly did the cooking.  I know I can hear you - the things I do to get out of cooking the dinner!!
The uncomfortable feeling is not as acute but I know it's there and still being careful.

New Years resolutions ??? Well more happy days, already have a few things lined up, improve my health, improve my mobility (umm heard that one before)... xxx.  

Thursday, 20 December 2012

Busy week with bloods ....

In my last post I forgot to mention the results of my brain scan.  They found it and no abnormalities discovered - whoo hoo.
My Urology appointment came through for last Friday, I went along despite suffering from a cold and could hardly keep my head up.  He showed me my scan on screen, I love it when they do that, and we went through why then what's involved in having stent's fitted.  Although  this is only a 15 minute procedure I still have to have general anaesthetic as it involves inserting a double ended hook from the kidney to the bladder so it is insisted that this is done under general on to maximise patient comfort.  After my pre op assessment I'm told there is space in the morning list for Monday 24th December.  Well the advantage of this date is that Rachel will be down and can be the taxi driver and responsible adult as I need to rest up so I have accepted it.  Then I get a phone call late Monday night to ask me to have my bloods done again as the anaesthetist is not happy with the coagulation.  Fine I'm on site Tuesday so it is easier for me to pop in and get it done.  I leave them my ext no to tell me what the results are like when they come in and I'm told to call back lunch time the following day ummm. However I do as I am asked and phoned them back at 12pm only to be told to come in again as they didn't collect enough blood. I was seen very quickly but my tears of anger flowed when I sat down to have blood taken again.  The nurse kindly took the sample to the lab, i declined as my energy levels are low, and she phoned me with the result but couldn't say what decision the anaesthetist will make.  I phoned up today and apparently they will look at them tomorrow and I will get a call if they have any concerns and if I don't hear from them I'm to assume all ok and turn up to the ward at 8am Monday. Umm will let you know when I do.

As I can feel my energy levels dropping and getting a bit like I was before I had the blood transfusion but without the vomiting,  I asked Dr Davis whoops Dr Benton, why it would happen again so quickly, yes I can see me being booked in for another blood transfusion at some point, and it all makes sense.  Normal red bloods cells ok.  I have a lot of under performing red cells as the liver functions are reduced.  At some point these cells take on the appearance of Target cells which are removed by the spleen even though they are working but not at full steam.  Lynn correct me if I am wrong.   I can't have chemo which we know works, as my swollen kidney won't work properly with the extra pressure that will bring. The stent's will help when they have been inserted.  Bit of a vicious circle.  My homoepathic prescription came through but I can't start that as I need to stop taking them a week before my planned op.

That's the boring stuff done.  Marrakesh was fantastic.   Our Riad was awesome and we were only a 20 minute walk for a healthy person to get to the main square.  Thank you Jo for the organising the stay there and despite my reservations after visiting the ports of Tangier and Casablanca I was really impressed and I would recommend it for a place to go.

A Christmas weekend with Gail Jennifer and Lennon where my plan B came into play as I really wasn't feeling well and I went back to bed and Gail sorted the tea out and I had a stew in the slow cooker for the Sunday.  Lovely weekend guys thanks for coming!

I will do a small post if I hear that the planned op doesn't go ahead so bye for now xx

Tuesday, 27 November 2012

Scan reports back given new treatment plan today

As I have not been able to have chemo, and only just started back on my Homoeopathic remedies it was no surprise to learn that there has been growth and progression with the disease in my liver and swelling in my kidneys and a first increase with the swelling in my bones. Reading my report tonight I have more questions that I will have to go back with but have enough to go on for the moment.  Despite this my blood picture confirms my liver functions have improved, my creatinine levels are now normal but my tumour markers are still out of range. 

Today's outcome is that my kidney functions not be able to manage the work needed when on Chemo so we have a change of plan. I am having an appointment with a Urologist to look at having a stent to drain the kidneys. This should also show whether the swelling includes disease as well as just fluid.

Due to the cancer progression I am being put on a course of 8 weeks of  Letrozole which is another Aromatase inhibitor like the Tamoxifen and Arimidex I had previously.  I have not read the bumph yet but the idea is to stop the oestrogen feeding the cancer.  I also have to be weaned off the steroids.

Well I have my work cut out for me at the moment looking the more natural remedies to assist.  I have a very timely appointment tomorrow with the BRI Homoeopathic team which I am very excited about.

Now onto more exciting things.  I have had a lovely but busy time of late including Balls, birthday and birthday treats and weddings - Congratulations Claire and Kev!  I am smiling on the beautiful memories made over the last month.  As I am feeling better and more in control I have been planning and getting prepared - Marrakesh with the gang next week,  feeling confident about it now and doc advised today about the flight as I have everything else covered - Sorted out Christmas and New year plans and even booked next years family holiday in Croyde.  Few more bits to plan (including plan b's) as well but feel so much better and looking forward to creating more fabulous memories xx

Wednesday, 14 November 2012

What a night to remember - THANK YOU...

To everyone that came and made it the night it was.  Early indications are that we raised around £1500 for the Penny Brohn Cancer Centre.  Money has also been coming in from friends who couldn't make the evening but still wanted to help.  If this is something you feel you want to do just email for the bank details and this will go straight into the charity account

THANKS to the people and organisations who kindly donated to the raffle , credits are listed in the leaflet which I will publish when the Bentons get back from holiday next week.

It hadn't dawned on me , with being busy being ill and delaying my own jobs, how much work had gone into with the arrangements until I turned up to help decorate the room.  I know I am blessed with the amazing friends around me but I felt embarrassed by the committee team effort that went into things that I hadn't even thought of to make the evening the success it was.  I think I managed to get to speak to most people and there have been a lot of compliments and photos flying around hailing the enjoyment.  I was happy people came and we had a fab night but stunned with the fund raising on top of it all.  Just show we know how we like to party.

I did do a little speech and whilst the ushers had been thanked, i.e. Holly, Clodagh and Mel, I neglected to say thank you to Holly for forming the idea from her party antics last year.  So THANK YOU to Holly, I love you and didn't we have a ball! 

ps.  I know you enjoyed being on the teenagers table xxx

Tuesday, 6 November 2012

What a refreshing change at todays Oncology appointment

I was ready with "I don't want to start chemo until next week for purely selfish reasons" and "Can we not look at the cause of the vomiting instead of just treating the symptoms"
I saw a different oncologist today, she had my chemo tablets in her hand and asked me how I'd been.  Told her I was still vomiting, appetite loss but feeling better overall after the blood transfusion.  I then had the reaction I was after  , "Ok I think we will stall the start of your chemo and find out the cause of these symptoms, I'll arrange for an Ultra sound test of kidneys and liver, full body CT scan and a brain scan and lets see if we can find out what is going on"  Eureka - at long last someone realising that this is not going away.  She also asked if I minded and I owned up being the honest person that I am.  She then examined me , did some tests and asked some questions.  On reviewing the blood tests I was asked if I could have another blood test done to check the creatinine levels. I feel like a pin cushion after yesterdays 2 attempts to draw blood and the blood transfusion last week.  Well the results are in and they want to scan my kidneys sooner rather then later.  I also remember that the last 2 CT scans have reported abnormality in my right kidney and this is the first time it is being acted on. 

Meanwhile I have started a course of steroids to increase my appetite and hopefully have an impact on reducing the vomiting. 

Now onto the more exciting stuff.  We have sold over 100 tickets for my charity ball on Saturday.  Family and friends are coming from all over the UK.  It goes without saying that there is a posse making their way from Worcester as well!  I am so excited and grateful as I appreciate the effort people are making by coming to the event, and the work being carried out by the rest of the committee Barb, Fred Lynne and James as this wouldn't be happening without the work they are doing.  Also there are a few tables of friends friends as well!

I am also getting lovely messages from friends who are unable to make the weekend and don't worry I will try and behave myself but now I have started the steroids who knows.  I just hoping these will help me stay awake past 10pm!!

Wednesday, 31 October 2012

Feeling much better after some quality red !

Firstly a huge THANK YOU to the selfless people that donate their blood as without them this would not have been possible and I am starting to feel so much better already after 3 units of quality blood.  Ironic that is Halloween!

Usual nerves leading up to getting there but I am over that now.  Afterwards I thought "what was I scared about".  It was a long day and after a good nights sleep I am now feeling the benefits and long may it continue.  It's making me realise how ill I was.

Oncology appointment next week where it will be decided if I am well enough to restart chemo on reduced dosage or start a course of steroids.  ummmm...

Friday, 26 October 2012

Blood Transfusion it is then...

Got an appointment to see my Oncologist Tuesday.  My liver functions have made a slight improvement but my Haemoglobin is low.  This would explain my breathlessness and tiredness.  He said at this level I would be offering you a Blood Transfusion to which I shook my head.  I'm not eating properly which isn't helping and I keep feeling and being sick.  He doesn't seem convinced this is entirely from chemo but has agreed to lower the dosage.  Admittidly I had to remind them of my personal circumstances and that it is not ok for that to happen again. I am meeting him again in a fortnight's time and hopefully I will feel better and can start the chemo cycle at the new dosage. 

As I had to call the Dr's to discuss changing my anti sickness tablets, we also discussed my fears of a having a blood transfusion.  I said I was going to try and eat more and drink orange juice to boost it up.  The Dr told me that was great but in reality a well person would take around a fortnight to boost the HgB with food and I wasn't in that category.  I couldn't argue with that. After giving it more thought and speaking to Lynne I was warming to the idea.  It was only when talking to Anne later on in the evening that I realised that what I was scared of was dialysis not a transfusion.  Anne kindly explained the process without laughing too much at me.  Next day got on to my health care team and I am booked in on Monday.  My blood grouping and cross matching have been done on my insistence and hopefully shouldn't be there all day.

Sadly, I have again had to change my plans for the weekend.  With being ill randomly it's not fair on me or my friends so again I am staying put.

Onto exciting stuff now. The ball is only 2 weeks away.  Don't worry I will probably be dancing all night after Monday!  Ok maybe that is a bit ambitious.  I am so excited now as the sale of the tickets have gone well and thank you to those that have bought theirs can't wait to see you and we will be in for a fun night.  Bar will  be open from 6:30pm.  We still have capacity to sell more tickets so as it's payday weekend, if you have been dithering just get on and buy your tickets.  Email to make your payments

Chilling this weekend again but still looking for that dress to wear at the ball... No JC it won't be a Green Basque!!  Have a good weekend everyone xx

Wednesday, 17 October 2012

Well that was short lived....

2 days in and I start being ill  in the mornings.  Recovering, I carry on and go to work and lo and behold, Saturday, my appetite starts to diminish.  Sunday it hits like an explosion and I struggled to keep my head out of the sick bucket  Nothing is staying down including water.  Monday I phoned up my GP and also the breast care team at the hospital who made me realise that this was chemo induced.  I had already stopped taking it as I had nothing to line my stomach.

After an injection at the Dr's that afternoon this gave me the confidence that the anti sickness tabs might work.  Now it's just morning sickness and I can stomach  Complan , energy bars and a spoonful of casserole.
With this in mind though, apparently when I have got on top of the sickness the plan is to continue with the chemo at the same dosage.  Personally I don't get this and still waiting for a confirmed plan.  Maybe I should double dose my anti sickness tabs ??

Some of the positive  things coming out of this are that I have discovered I have a wheat intolerance and now feel tempted to make soda bread with spelt flour and non dairy butter milk.  I have tested spelt and this is ok.  Also in 5 weeks I have lost a stone in weight! Whoo hoo but wouldn't recommend doing it this way.

Will keep you posted but staying close to home for the moment xx

Friday, 12 October 2012

Chemo it is then....

and I started Tuesday night with Capecitabine which I had in January.  My bloods and tumour markers haven't improved over the last 4 weeks.  This has been hindered by me feeling ill.  All the symptoms pointed to a liver infection and I have been in touch regularly with the Secondary Breast Care nurse.  I had 2 episodes in 3 weeks and a normal healthy person would fight it without knowing, however as I have a poorly liver, it struggled and didn't I know it!
I am disappointed to be going on the chemo again but it will all be  fine as it was earlier in the year.  I will be doing 6 cycles (3 weeks to a cycle) and the results will be measured by my blood test results towards then end of each cycle as before.
My talented nephew, Jamie stopped by and helped me with my desire for homoeopathic remedies and my supplies of Astragalus , Ashwagandha  and Gotu Kola have arrived.  These will help with my immune system and the fatigue with lots of other benefits as well. 

Well onto the more exciting stuff.  Thanks to those that have already bought their tickets for the ball on the 10th November.  Those that said they would  now is the time to buy your tickets.  Those that are thinking about it still, go on you know you want to...  You don't want to be looking at the photos afterwards and think I wish I had gone...

Also thanks to those that have donated raffel prizes.  I will update the website this weekend - and email for your tickets and if you have anything you would like to donate.

On the plus side with this being ill thing, I have lost 12lb in weight.  Always looking on the bright side Sue xx

Tuesday, 11 September 2012

Drug free summer over and back in Cancer land.

"I have some good news and some bad news" is what my consultant said to me this morning.  I have had a lovely summer not being in cancer land then back to reality with a little bump.

The good news is that the CT scan has reported no significant change and no new liver lesions. The report author noted changes in the right kidney but I need to research to find out more as this wasn't discussed.  I also pointed out that more good news was they had the report ready for my consultation.  Ok I did have to wait 40 minutes!

The bad news was my blood test results.  My liver functions have shot out of range as have my tumour markers, indicative of changes happening that have not been captured in my scan.  This means that he would prefer me to have another course of chemotherapy in case the liver functions deteriorate further.

During the summer holidays I have not been keeping with routines, milk thistle etc, so we have agreed that I have 3 weeks to bring my liver functions back in range and then we can make a decision about the next course of action. 

This wasn't news I wanted to hear however I know I can manage it as proved earlier on in the year.

The other meeting I had today was with a consultant surgeon looking at improving my breast symmetry.  It will be easier to use an implant but of course this requires general anaesthetic so I have to wait until my bloods have improved.

Taking my mind off the prospect of being on more chemo, I am very excited about the charity bash that we are organising on November 10th 2012.  The website  should be available imminently and strangely I can access it at work but not at home.  In summary -
  • Black Tie Charity event at the Somerset County Crick Club in Taunton.
  • 3 course sit down meal
  • Live music and disco
  • Charity Auction
  • £35 a ticket
  • email for details on how to obtain tickets either on line or by cheque
  • Tables can be bought as well seating between 8 and 12 people.
All proceeds from the evening will go to the Penny Brohn Cancer centre in Bristol.

This is just a little bump and I have a ball gown to shop for and renal pelvis conditions to research.  What an exciting life I lead :-)

Wednesday, 13 June 2012

More Fantastic Results :-)

So I must be doing something right!
I had my CT Scan last week and popped along to the Beacon Centre for my results on Tuesday.  Usual routine, I was kept waiting as they hadn't got my results in.  I forgave them easily when the Oncologist came in and was mightily impressed with my blood results.  Liver functions all back in range and my tumour markers significantly reduced, however he was more pleased with my Liver functions.

All he could tell me about my scan results was it appears there has been  no change and no new lesions discovered and would email it me in a couple of days and no need to have chemo :-)  and was I happy to wait for another scan in 3 months time.  Drug free summer bring it on!!.  

The report hit my inbox later that afternoon and "These lesions have shown no definite change since the previous CT Scan of 20/03/12.  They have certainly not increased in size and no new lesions are noted" Whoo hoo...

My confidence is booming with what I am doing.  My next scan will be even more interesting as there will have been almost 5 months with no chemo just my holistic approach with the benefit of no side effects!

Normality can reign once again and I need to embrace this opportunity to concentrate on loosing weight and increase my agility.  Ok maybe start next week:-) 

Party plans for the 10th November are under way , I will tell more when bands and disco are confirmed but meanwhile book it out in your diary's as a  night not to be missed!!

Saturday, 12 May 2012

Chemo round 6 finished whoo hoo!!

Considering I'll be on these for hopefully a very long time I feel reassured that the impact of the side effects was managable.  First time round anyway!  I am on a break from drugs now and a scan is booked for June when I will be reassessed .  At least we already know they work, or was it the apricot kernals? I shall have to wait until June. Meanwhile I am still  reasearching affordable holistic care as I am not leaving anything to chance. 

I was given crystal therapy last week by the very talented Karen Jeynes and I was left buzzing it was awsome.  The fatigue just dissappeared.  This inspired me to get my own crystals out and use them again. My next item to compliment what I am already doing is Mistletoe Therapy.  Watch this space!!

During the last month I have been reflecting on the milestones I have passed over the last 12 months. A year ago I didn't know if I would make the year out, according to the Oncologists Planning the wonderful holiday my friends sent Holly and I on.  My fab wide wake rehearsal on that glorious sunny weekend. Sadly I have lost some friends I have made in cancer land over the last few months making me realise how fickle cancer can be and how quickly it can deteriorate.  This does make me a bit nervous but then more determined to fit in as much fun as I can.  Have already booked a holiday in Croyde in the school holidays and for the first time my younger brother Ady and his family are joining us and they will discover this wonderful part of Devon and understand why this is my happy place :-) 

After Holly's surprise party for me last year for my birthday,  I have relented and said we could organise one for this year, not that it's a special birthday or anything as I am only 21 (he he),  but use this as an opportunity to raise money for charity at the same time.  I will post more details in the next few weeks but for now just to give everyone the heads up, keep November 10th 2012 clear in your diaries and start saving your pennies and be prepared for a night of excellent cuisine, music and fun !! 

On that note have a lovely fun packed weekend everyone as at least the rain has stopped!! xx

Friday, 6 April 2012

Another good result!

and apologies for not updating this blog sooner only I still feel quite deflated over the way the appointment went last week. My Onc apologised to me as the CT Scan results from the 20th March had not been reported so she had examined the scan and could confirm that it looked stable.  I felt so dissappointed by this even though this is good news.  My bloods are great which is more good news and she agreed she would email when she got the report and my prescription ready for Cycle 5.

I trotted across once I got the email and the report I was given was a summary stating "Some of them have dimished in size since the previous study"  I then asked what size was the largest toumor and she reluctantly told me 20mm.  FANTASTIC 6mm reduction!!  I have asked for the complex report which will confirm this but this is what I wanted to hear on my appt.  I feel let down and deflated on how this update was delivered however it is fab news and only 2 cycles left to go.... I was hoping for better results but these are still great and will encourage me to continue with the lifestyle changes I have I made.

Holly and I had a fabulous and funny weekend in Derbyshire with friends , Penny, Jo & Joe, Barb, Fred, Wendy & Lol, Mel, James & Lynne, Amy & Libby, Tony & Tracie, then Julie Adam & Ben , Stuart Jeanie, Jordon and Sophia turning up Sunday for a BBQ in the glorious sunshine.  Hard to think it had 2 inches of snow 2 days later ! No Holly we are not going back!  Holly and Mel got taken for a walk in Bakewell.  I can say the shops were ace.  The BBQ was fab, just everyone chilling out in the sunshine trap of a garden.

Annual leave continues and just chilling out.  I am feeling tired but I think that is recovering from the weekend of late nites and the oral thrush is trying to make an appearance but the Difflam is keeping it calm :-). 

Rachel and I popped into the Plough yesterday and had a cider to toast Colin's birthday with.  Cheers Colxx
Hope everyone has a releaxing Easter break and yes I'm popping up to my happy place :-) xx

Tuesday, 14 February 2012

One third of the way through...

Cycle 3 starts tomorrow.  Side effects have started with my hands drying out and my feet turning purple and stinging.  This is all to be expected and I was hoping to get away with it after sailing through cycle 1. The Coconut oil, Aqueous cream and Aloe Vera gel are helping.

I am tired but I don't think I have recovered from a hectic week and weekend with a wedding, congratulations to Chloe and Rob and an 18th birthday celebration Laura Lou!!   I'm in for another hectic weekend involving stag/hen night and wedding -  whoo hoo for Tony and Tracie :-)

I found an interesting resource on the BCC forms The Spoon Theory  which I have started to apply to myself and realise I have to save some up for the weekend.  A lot of people use this to explain to their friends about their energy levels. As usual I have to be different.  I'm using it to tell myself it's time to rest ...

Sunday, 29 January 2012

Cycle 1 completed and Cycle 2 started

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 !

Tuesday, 10 January 2012

Another fantastic result!

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!!

Saturday, 7 January 2012

Chemo Cycle 1 Day 4 so far so good

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 

Wednesday, 4 January 2012

Busy couple of days and have started Chemo

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!