uksue
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Hi Ron,
How is your treatment with Gemcitabine going? My husband Ray bad two month’s treatment of this at Leeds and the only side effect he had was that two days after the treatment he felt vey tired and this lasted about 48hrs. No hair loss or nausea, but it did hit his platelets badly and he had to stop treatment. But for the first time in two years the 3 monthly scan showed no growth of his tumours, so it is a pity he had to stop short of the full treatment.
Hope this works for you.
Sue.Hi Darla,
Ray has come home from the hospital and they say the Stent is working, but he has odema and water retentiion in his abdomen which my daughter explains is ascites due to the cancer. They have given him water tablets which dont do a thing so we are going back to the doctors today. Reading this website they he probably should have the fluid drained but he is so fed up of hospitals and needles that he doesnt want to know and just says to give the water tablets a chance. Our daughter and my two stepdaughters constantly phone me and tell me to push him to the doctors, but I am trying not to push him too much I have to accept if this is they way he wants to handle things.
I think it depends upon your nature whther it is best to know what to expect. Sam and I would rather know, but Ray wishes he has nver been diagnosed and would rather put his head in the sand and pretend he is not getting any worse.
Do you work, Darla? I have a small business which I run from home, I cant spend much time on it at the moment, but I am wondering what it will be like living alone and working alone here too. I think it would probably be better to mix work with other people.
Are things getting any easier for you? I am told that the first Christmas is hard when you have last someone. I hope to still have Ray by then but I dont know whether I will.
I Thank you for your advise of “One day at a time” – you are right, I will try not to look too far into the future and just deal with every day as it comes.
Many thanks,
SueDear Paulina and Darla,
Thank you so much for your replies. The good news is that at the second attempt they managed to put a stent in for Ray. I dont know much more than that at the moment as I didn’t get to talk to the surgeon as I had to go at 8pm and he hadn’t been to see Ray as he only came out of surgery at 7pm. I am hoping that over the next few days he will start to feel a little better. He is in St James hospital in Leeds, they have a fantastic reputation and I know he is in good hands. I will have more news when I go today.
I hope he will be well enough to come home soon.
This episode has really shaken me though, I thought we would loose him in the next few days, I suppose we might still, but there is a chance we may have him a bit longer.
My daughter is taking it quite hard, she is a final year medical student and she knows exactly what happen when his liver fails, it is really hard for her trying to do her work in the hospital, studying and coming home from Hull where she is based several times a week to see her Dad.
It sounds so lonely you both taking walks alone on opposite sides of the world, but I suppose you need time on your own to let it all out. Someone once told me that you should not expect too much from yourself for a year after a death of a close one, I dont know how true it is but the physical and mental effort of looking after someone must take a long time to get over.
Sending you both my love,
SueHi Pauline & Darla, Thank you both for your kind thoughts, it is such a blessing to have people I can contact who know exactly what I am going through.
Ray is currently in hospital, he is very jaundiced and has a very swollen tummy due to the cancer and water retention. They tried to put a stent in yesterday but couldnt, they are going to try again today. I am just waiting to see what time I can go and see him. The cancer is about 16cms, so it is taking up much of his liver. He was hoping to have a stent and then go back on chemo to try to shrink it but I dont think they will do that now.
We have all notcied a change in Ray, he has always had a really witty sence of humour, but he is so tired that it is all he can do to put a few words together. He can get out of bed with a great effort, but it is almost as if the husband I knew is no longer there. If they cant relieve the jaundice and acites I dont think his liver will be able to cope for much longer. The only good thing is that so far he has no pain, only the exhaustion, I have read on this site that is how some poeple are right up until the end, so I hope he will be like that.
Being on my own in the hose has given me ae of what it will be like after he has gone, it is the stupid little things that get to you – I went to fill the car up yesterday and couldn’t get the petrol cap off – so I had to drive off again! I think I am pretty independent but things like that make you feel so helpless.
I hope you dont mind me chatting to you it somehow helps to write it all down.
SueSuzanne,
My husband also had no sympyoms, he was diagnosed during a routine scan very nearly two years ago. At the time they found it the tumour was large 8cms intrahepatic and no surgery was possible and they gave him 6 months to live. We decided not to go with the chemo until he started feeling unwell as there was no point making him ill when he was not. We had 16 months with lots of travel and catching up with friends then in June the consultant said he suggested trying Gemcidabine as although the cancer was growning slowly from scan to scan it had progressed considerably over the year. The chemo stopped the growth, but at the moment he is jaundiced and just waiting for a stent so he can continue chemo. Still his only symptom apart from the jaundice is extreme tiredness, but no pain thank God.
So please dont panic, everyone is different, and it sounds as if you have your cancer in a part of the liver not affecting its function as yet.
Let us all know how you go on.
SueDear Pauline – I havent logged onto this site for a while and I was very sorry to hear about Anthony. You wrote to me several months ago as I am in a similar situation to you. Ray is 63 so I think we must be of a similar age, and I also have a daughter.
For 18 months we have been lucky as Ray has been fairly well, but this last 2 weeks things have started to change so I think it is the start of the end.
I think you have nothing to blame yourself for, you couldnt have done more for Anthony, you stayed with him all the time for his last two weeks. However, I also think that the guilt is something everyone goes through, I lost my Dad a couple of years ago and still blame myself for not staying with him on his last night – he died before we could get back to him in the morning.
When you are watching anyone you love die, it is totally debilitating, and you really arent thinking straight by the end. I am sure you did all you could for him and more.
I am glad you are starting to make small plans for the future – I am sure you will find you have more friends and support than you ever thought you had.
I think we keep ourselves strong for our loved ones while they are ill, so it is natural when they go we let ourselves feel all the pain we have been holding in for so long.
I send you all my love.Jeff and Carol, thank you for your comments. We thought the jaundice was caused by the cancer spreading but the CT scan didnt show this, so we are puzzled. As the cancer is quite large it may be that the rest of the liver isnt working as well as it should and I think that is the idea of the biopsy.
Radiotherapy is not commonly used in the UK, and when we asked the oncologist said it wouldnt be effective in our case. I think we are lagging behind the US in this field, but we can always ask again.
It is a real roller coaster ride.
Jeff you deserve a medal for remaining so positive for so many years!Hi Jane and Pauline,
Good to hear from you. I think the Uk is still on a learning curve with CC. My husband went to York hospital for his scans initially under the NHS, although he had private insurance, they were really good and got him tested very quickly, he had unltrasound, a CAT scan, MRI scan and a biopsy all in a matter of a few weeks. When he was finally diagnosed the specialist told us we should have a second opinion, as they had little experience of CC, so we went to the Leeds spire hospital and saw Dr Crellin who is one of the leading Oncologists in this area.
He told us that while Ray had a good quality of life there was no piont in making him ill with Chemo, so we just waited and watched what developed. At the moment it appears to be slow growing but we know it can all change. But we make the most of things while we can. We are going on holiday next week for nearly a month driving through France and Spain with the convertable we bought with our retirement savings just after he was diagnosed. Because he still has no symptoms we would still not know he was ill, which was a bit of a bummer really, as we have had 18 months of worry, but on the other hand it has given us the opportunity to make the most of family and friends, and in a way, come to terms with the fact that while he is well now, we know he will get worse and will need chemo. It is quite hard for our daughter, as she is a 4th year medical student, so she is contantly looking on the medical sites to see if there are any new treatments, but she is a great support to both of us.
I hope you both continue to find the strength to be a rock for your loved ones – it is good we can let it all hang out on this site!
Hope your next news is good news!
Sue xKristin, thank you for your comments, I agree with you they dont know much about CC or it’s causes. My husband might have had this tumour for many years, we dont know.
It is good to hear of someone else with our experiences. Long may they stay stable!
Take care,
SueDear Jeff, I understand a little how you must be feeling, our friends all say “brilliant!” when another scan is OK, but you are living your life holding your breath until the next scan. the only way we can get on with life is to pretend it isnt happening, and just act normal.
You sound as if you have had enough of the Chemo – we were told it only has a 30% chance normally of working ie. halting the growth or helping with symptoms, and for my husband he wanted to do too much to have his life interferred with by chemo side – effects.
I do hope you get some good results next week, will you let us know?
We will be thinking of you.
SueThanks for your replies and good wishes.
Jeff, how long did you remain well and did your CC continue to progress slowly? Sorry to ask I am sure you have given all these details before but I cant find the thread. Hope you are keeping well now – and Happy anniversary it is such an acheivement for you! By the way no relationship to your sister -in-law!
Ron, We are near York – What your doctors said was word for word what they told us. I agree it is difficult to do nothing, but in our case it was the best choice as my husband has had over a year of good health when he would have had chemo side effects.
Kris, Thanks so much for your kind thoughts. all the best to you.
