Life after chemo
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Hi Gavin, that’s really helpful. And regarding Whitby, we have been twice in the last 3 weeks, fish & chips as good as ever. As you say, they go perfectly with the sea air and the sun. We carry on as much as we can doing what we have always enjoyed, and we won’t stop until we really have to. Best wishes to you. Simon
Hi Simon,
Thanks for letting us know how things are going right now for your wife. Have you spoken with your wife’s doctors about her swelling in the leg and her abdomen, as it could be ascites and there are things that can be done for this. My dads legs and ankles swelled up and he was given tablets for this, so I think that if you have not already done so then maybe you could speak with the doctors about this. Also, my dad used to like to put his feet up when he was sitting down and that seemed to help him a bit.
You can get in touch with Dr Giles here –
http://www.cholangiocarcinoma.org/ask.htm
Were you and your wife able to get to Whitby for that day out and the fish n’ chips? Nothing like fish n’chips in the sea air to bring a smile to your face, especially if it is sunny! Not so good up here in Dundee today weather wise, but still okay considering!
My best wishes to you and your wife,
Gavin
Thanks to you all for being so supportive. The latest thing for my wife is that she is losing her hair, and her left leg is swelling up, in addition she is getting many more veins popping up across her body. Has anyone seen thus, got any advice please. Thanks Marion, but how do I get in touch with Dr Giles? Regards Simon
Sti….I have been there as have many others and I know how difficult it is to balance hope with realism. We live in a state of perpetual anxiety while balancing it with anticipated grief. Tough stuff. It goes back to cherishing each day as best as we can. And, as you are helping your wife with her anger issues….love, hugs, and great memories will resurface also. Please, also remember our Dr. Giles, our Psychologist.. He is here for all of us including, you. Often times I read through his comments and always I walk away with a bit more wisdom.
All my best wishes,
MarionSti, just want to mention that all the side effects your wife is experiencing can be treated. I would suggest you talk to her Nurse/Doctor and they can help get this effects under control. Sounds like you have planned a lovely day! Enjoy.
Hello again and thanks for all your replies. Totally understand the pilot thing, and I think I’m guilty of that. I should have learnt by now that with this, little boxes don’t work – they have to with my job, but not here. I guess I am trying to find something to cling to that is certain about my wife, if that doesnt sound too daft. Living each day is the thing, I understand that, but I hare the thought of my wife leaving me. Jolly, to answer your question, she was on Gemcitabine (spelling?!), Cisplatin & 5FU. She is doing well, in work most days, but getting mire breathless, veins are up all over the place, her hair is really thin, distended abdomen, and her appetite is nothing like it used to be. But, we are trying to live each day. Some anger issues are surfacing which I am now trying to help my wife with – that’s not easy. We are taking a day trip to Bridlington (East Coast Yorkshire town) for a short beach walk tomorrow, then fish & chips in Whitby. Thankyou all for your time and help. I hope we get to see over our valley in summertime again, enjoying the sun and listening to the sheep from our balcony. Who knows!
Hi Simon, Sounds like your wife has done very well and is doing well. If the cancer kicks back in and she starts to decline she can get other treatment (different chemo for example). I’m praying that it doesn’t! People can live in remission for years! Wishing you all the best! Nancy
If I get into the trial, I’ll be starting SIRTS in April. The chemo is capecitabine. Is that what your wife took? How did she handle it?
You know my husband wants to know exact dates about everything which makes it hard when the answer is wrong. A psychiatrist once said that Navy pilots can only function by putting issues into little black boxes in order to do their critical jobs. If they were distracted by a family matter for instance they may not be able to concentrate on their flying as carefully as they should. My point in saying this is that there are times when no one can answer the question and we have to learn to live with that uncertainty. If you knew the answer would you live your life differently? Or would you take the days and live them with more joy as each one is precious? And tell every friend and family member how dear they are to you and what they have added to your life…….
Dear Simon, like we used to say, “only the Shadow knows”. Honestly no one can predict this crazy CC. Some poeple that were given months are still with us after years, some given years were with us only months. We have story after story of members beating their odds. So, we like to say that we were not born with expiration dates on the bottom of our feet. The Oncologist may be able to give you some idea according to her Labs and Scans, but its really a hard thing to determine. In the meantime I hope your wife is doing well. Why would you be told of a quick decline? Is she not doing well now?
Hi, it’s a while since I was on here, but it’s a lifesaver for me seeing the various discussions as I continue to care for my wife. I posted a while ago that my wife was back at work after intensive chemotherapy & SIRT for her CC. Can anyone please offer any advice on life expectancy after 18 months of this treatment? We were told ages ago that 9-12 months would be expected without treatment. My wife’s last received treatment last August. It’s now March, so just trying to get things into perspective. Absolutely any thoughts owoukd be very much appreciated, as I have been told to expect a quick decline. Thanks in advance. Simon
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