I started an 18 week course of taxol on 16th August last year so was supposed to have had the last one on Christmas Day but due to hospital admissions,eurodisney,christmas and new year, I had the 18th today It seemed to be working as my liver function was normal after my blockage in july and i could eat normal food as my tumour squashing my oesophagus had shrunk as I had been on 1st stage baby food from april to sept last year. However, since christmas my swallowing had become more difficult but had improved through the 3 weeks in january when I had the chemo. However, only missing 1 week last week I’m now back to regurgitating bread etc.
I was hoping that by having more taxol which I’d been promised previously would reshrink the tumour. However, the Reg I saw today feels I am too tired and that taxol is failing as my skin met has reappeared and my breast lump has returned. I also pointed out that I felt I had some swelling on both sides above my collar bone and my hickman line was hurting where it disappears over that area. She had a feel of my neck and says I now have further spread in my lymph system in my neck so wants me to stop the taxol and have a CT scan asap - means 2 - 3 weeks and come back to clinic after the cT. She said I looked too tired to continue but my blood tests were absolutely fine and hadn’t changed.
I’m not anaemic and my wbc is respectable. I want to continue until I have my CT scan as I know how aggressive my cancer is and if I stop taxol now my CT scan will show huge growth whereas if I stay on taxol it will be a mixed bag hopefully and I will be able to swallow. She was going on about my quality of life not being good if I am tired and to me, my quality of life is more about being able to eat normally with my family even if I sleep more in the day. The children would prefer I could eat normally and have an afternoon sleep than regurgitate and eat pureed food and be active.
It occurred to me when I got home that I hadn’t put any make up on this morning when I usually do wear it to chemo so I’m better at doing my makeup than I thought I was - thank you Beneficial all in one foundation! (Am running out so thought i’d buy a cheap version as now on benefits but think I will buy the same again if it is that effective!!!)
Am scared that it has spread whilst on chemo but actually think it grew during those 4 weeks off over christmas as last time it only took 3 weeks for the liver one to appear and make me go yellow so it probably did grow during that time.
Also, if stop taxol now I’ll be back to pureed food in 2-3 weeks and I just can’t face that.
Am I being unrealistic to push to stay on taxol for 3 more weeks to see what CT scan is like and to see if it does improve my swallowing and shrink my lumps and skin ones.
I really have reached the end now of chemo options unless they are willing to let me have vineralbine again which they were in November after I recovered so well after nearly dying.
Next week, I will go with someone who can fight my corner and I will see the consultant rather than the Reg.
Came home very upset and tearful but at least this time I had managed to talk to one of the chemo nurses about what had happened today and she was really good and did spend quite a lot of time with me.
I am not ready to die - I still have a lot of energy and my breathing is OK but knowing how aggressive my cancer is if i don’t have chemo I will be dead within 8 - 12 weeks and having pushed the boundaries this far, I want to push them further and live a little longer and I am so scared of not being able to swallow as it was so awful last time. I know I can’t go on much longer - my heart is bad, I need diuretics and my lung function is poor but I have a reasonable but limited life and i just want a last chance. I live too far away to go on trials at the marsden as it would defeat the object of staying alive if I’m not here half the time.
You’re advice pleae - should I just accept I’ve reached the end or do I push to stay on taxol for 3 more weeks and switch to vineralbine.
Katexxx
Hi Kate…reading through your post it seemed, to me, you are not ready, wanting to stop treatment just yet. I was offered vinorelbine or Xeloda last year. I opted for xeloda but was told vinorelbine is one of the kinder chemo treatments and I think it will be my next treatment when I need it. I was told Taxol would knock me for 6.
I put on loads of make-up…especially blusher…when I go for my hospital appointments…it’s my L’oreal ‘I’m worth it’ policy.
I hope the swallowing improves.
Belinda…x
Hi Kate
Ive read your post and it seems to me as well that you are not ready to stop treatment. Like you said your bloods are fine and if you want to carry on the chemo then that should be up to you. I dont think you are being unrealistic about wanting to stay on it til your CT scan to see if it will give you relief with your swallowing. I would def say take someone with you next week and make sure you get your wishes across.
Vic xx
Hi Kate
Am so sorry to read your post, but I think you should definitely keep fighting if that is what you want. Why should u be denied treatment because they think you are too ill. It is your body and you know best how you feel and if it helps you to keep some quality of life to (ie the eating), then think you should continue chemo.
I know that I would keep wanting everything and anything when the time comes, just so I can see my babies growing up still. I am so terrified of the future, but it is ladies like you, that give me the courage and determination to know that I will fight for my rights.
Kate I hope you decide and get the treatment if that is what you want. 3 weeks is a long time to go without your treatment and I fully agree with what you have put.
Good luck Kate, thinking of you and sending lots of love.
Dawn
xxxx
Kate
I think you should go for what you think is right - and just think about the taxol now for the moment. If your bloods are fine they should treat you- it shouldn’t be on the judgement of someone who just looks at you. Its a shame we have to put on a front, do our makeup etc so that we convince people we are coping OK. I am sure you are right about that…
I dont want to be negative but it seems there is a constant thread at your hospital where they want secondary people to stop taking up resources and treatment…I think they would be different if it was them.
good luck and thinking of you
Cathyx
Hi Kate
So sorry to read your post.I always do full makeup and am very pleased with eyebrow pencil! I can recommend Yves St Laurent Touche Eclat for the dark circles, not cheap but perhaps a late birthday present! I think it is up to you and your family to decide what you can and can’t manage. I am quite sure that mine would prefer me to share mealtimes etc and rest when need be and most importantly still be there. If Taxol is helping with that and it is manageable then that must be an argument for continuing. I think you should press to see the consultant. There are a lot of people here rooting for you Kate and hoping you get better news
Love Kathryn
I’m a Touche user too…here Superdrug are selling it about £3-£4 pound cheaper than the YSL make up counters. Like Kathryn has already mentioned it is great at covering dark circles Kate. We shouldn’t have to try and look our very best should we? Just seems necessary, well to me, that we have to look as though we’re not ready to throw the towel in…if I’m well enough to put some lippy on I’m well enough for more treatment…crazy really but I think we are so often judged by our appearance. I remember someone posted here once to say she took her little son, with his lovely red hair, to appointments so the staff would remember her.
Cathy, so true about resources and how much hospital money is spent on secondary patients.
Take Care everyone…xx
Hi Kate,
it should be up to you. If you feel like going on and the Taxol does make you feel better then they should give you it. You are the one who knows your body best. I agreed with my oncologist when she said I should not have another chemo yet, but my situation is different. Chemo didn’t make me feel better. And the last 3 didn’t work. But even then I would have prefered to go on with the next one. Take somebody with you next time you go to the clinic and make sure you are heard!
Peggy x
My dear Kate, you know your own body far better than they do. You also know the consequences of not having treatment for any length of time. Kate frankly I wouldn’t wait a moment longer than you have to. Insist on the treatment you want and need. You are not ready yet and neither is your body, to say enough now - there may be new cancers but there is also a response to treatment,
C’mon Kate you know, what on earth does a registrar know, how can she know more than you. You are not in denial about your condition, in fact you are painfully realistic. They’re probably just trying to reclaim the comfy chair.
Is it time for another barrage of letters?
Hi Kate - sorry to hear you have another battle on to get treatment - think the quality of life decision should be yours - its your life…and it comes accross to me as if they are not listening to you and what constitutes quality for you.hope you get better response when you see the onc - they have just stopped my taxol for the last two weeks - cos of numbness in fingers and toes - it was not negotiable the first week but spoke to registra who said if i wanted to risk it for another go it was up to me (chemo nurse ad already said no to me)- I said I did - then they phoned and said they couldn’t get chemo made up in time so had to wait another week - I am sure its the chemo nurse who put oar in…she doesn’t like me …usually they get blood results on thursday and order chemo for friday - but suddenly it takes 8 days to order chemo - sorry didn’t mean to rant but just to say I understand your frustration…
So sorry to hear this Kate - and also quite cross on your behalf about doctors presuming to tell you about your own quality of life. Quality of life issues as far as I am concerned are completely personal - what matters to one person is not as important to someone else and vice versa. THe impact of cancer on each and every one of us will be different (even when we have very similar symptoms/diagnoses) because we are all individuals. So your statement that being able to eat is more important in terms of QOL for you than the tiredness is absolutely valid and no one can or should argue against it, least of all the medical team that is meant to be supporting you. The registrar is not refusing you treatment on medical grounds if your blood counts etc are reasonable but because of their own very subjective and biased view about QOL.
Hope you manage to get a different (but the right) answer from the consultant and can continue on Taxol until the CT scan. I know you say you can’t transfer to the Marsden cos of the distance etc but could you ask for a 2nd opinion there? That might just put a bit of “pressure” on your current team.
Sending you lots of love Kay xx
Kate popped on here after seeing your post on gg.
Cant say any more than the lovely ladies here- yet again you should not have to justify your decsions, as you say, you know what upsets your family more and they should suck it up! Ggggrrrrrrrr
xxsam
Oh Kate your hospital really does get me cross. It has to be your call, as you have said you always feel better when on chemo than mot. You can swallow better than this time last year and you no longer require oxygen full time and as you say you missed treatment over Christmas and have just gone back on it, your bloods are fine and you are able to take your mum and children on holiday. That tells me you are not ready to stop treatment and that your quality of life is preety remarkable compared to some of us. I hope you can take someone with you that can express how you feel and how important it is to you to carry on buying precious time with you family. Don’t want to nag and tell you what to do but maybe make notes so when you have to face them you can refer to the key points and don’t forget to mention that the Dr who has gone away for 3 months did not expect you to still be alive when he got back. What sort of doctoring that is I am not sure but I am relieved it is not the practice at the Royal Cornwall. Please don’t let them bully you. You would think after the response they got from all your cyber friends they would behave in a more professional manner.
Good luck.
Love Debsxxx
Hi Kate
I’m so sorry to read your post. I really don’t understand how medics can take one look at you and make an assessment of how tired you FEEL. Have they really never seen anyone wear blusher and foundation before?
I think it’s remarkable that your bloods are fine given how vicious the Tax is on the bone marrow. So, if YOU feel you have the energy for another 3 weeks then the registrar should really be listening to your definitions of what constitutes quality of life, not what she imagines would be important to someone in your shoes. She can’t possibly understand what your priorities are.
It seems to me like she is making the call on how she thinks you will cope with three weeks of treatment based on your au naturelle appearance. At the moment you feel up for it, but after two cycles you may not fancy the third, or perhaps you’ll be screaming “bring it on!”. Who knows? It might help if she could view this as you taking one Taxol at a time and seeing how you feel, instead of making a judgement call right now on whether you could complete the three cycles as a batch. It’s kind of like eating the elephant in bite-size chunks, not whole! You can always stop if you were to feel crap.
I really do hope you can get what you want. Also, it may be worth seeing if the Marsden would be able to supervise a trial remotely…
big hugs & love
xxx
I have never posted here before but have followed you for months and after reading your blog I felt like my heart was going to break for you because I can feel your desperation stand your ground girl jump up and down scream cry plead do what you have to no one has the right to stop this treatment but you, you have pushed everything beyond there limits and if you feel you can cope you go for it its your life and your body i wish you all the luck for your next visit and you are in my thoughts i pray you get what you want no one has the right to say enough is enough but you
Kate - you push and push as long as you like. Did it not occur to the medical experts that you may have been tired as you had been to Eurodisney last week…Your quality of life is a factor that only you can judge…and you certainly had some good quality time last week…
For all of us who are fortunate enough to know you well, we know what a fight you can put up and I can’t see why anyone else should decide that enough is enough…What happened to you last Oct/Nov was nothing short of a miracle and really shows the drive that keeps you going…We all know that the experts have been wrong with your prognosis in the past - they have nothing to judge you against so the decision MUST stay with you…
Glad to see your sister will be with you next week…
Lots of love
Heather
Keep on fighting for the chemo, be it more Taxol or vinoralbine. You know your body better anyone else, especially as it seems to me that you don’t often see the same health professional each time, so they can only know you from medical notes.
I think the second opinion at the Royal Marsden would be worth pursuing if you can.
I wish you lots of luck - you are in my thoughts and prayers.
Love from
Linda
Hi Kate
I have read some of your comments in the past on here and gobby gang and you seem to have a real fighting spirit.
If I was you I would shout and scream from the highest point of the world and tell them you are not ready to give up and you know your body. You know what you are willing to accept in the way if quality if life and how much or little you want to give or take.
If you feel you can cope with more chemo and want to give it more time to try and do something then fight all the way take people with you if you have to but please dont give up.
You are a real inspiration to a lot of us and we look forward to listening from you ( i no i do )
Please take care of yourself and fight for what is rightfully yours.
You go girl - girl power and all that stuff.
Lisa xx
Thanks for all yoour support. Beginning to worry now about everything. the one dose of taxol last week has definately helped my swallowing but my breathing has deteriorated today and am not sure if it is due to the dust made by my hubby’s friend decorating the kitchen or if it is due to now only taking 1mg dex when been taking 2mg. I had to have a nebuliser tonight which I haven’t had since my chest infection in decembefr and don’t feel I have a chest infection.
My spine to shoulder blade is extremely painful and I think another vertebrae has crumbled. T5 crumbled in december and the pain is as bad now as then so think t6 has gone now as hubby and other adults look taller again!!
Now really worried it has squashed some nerves to my bladder/bowels as don’t have a sensation that I need to pee and just trying to remember when I last did a poo and think it could be over a week despite regular movicol, dicolax, picosulfate and senna. Suddenly become very scared tonight and hubby not around. Stomach looks huge!!! Seeing district nurse in morning so see what she says - can see will be in hospital tomorrow instead of shopping!!!
think I will have to hit all the sleeping pills etc that I can tonight as so worried now.
Let you kknow what happens.
katex
Hi Kate…I really don’t want to worry you any further but just wanted to say do push for an urgent referral for a scan if you still don’t have the urge to pee tomorrow…I’m sure you would know this info already but spinal cord compression can often be treated if it’s discovered early enough. About a year ago I had a pain running down my leg, I phoned my hospital and the scan and results all happened and came back that day. They thought I might have had spinal cord compression and treated it as an urgent investigation. I didn’t have compression but I knew 2 friends with spinal cord compression and without going into their details here I’d urge you to make sure you have it investigated asap if you think there’s a problem. Take Care…xx