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Hi Figen,
If I were your mother or your father I would want to stay at home and be with the people who care about me and not with strangers however caring they are. At the end my husband had no pain and he was even sitting up and talking the day before. He did not die in his sleep he looked at me very intently as if he wanted to say something to me and then off into the distance as if he was seeing something else not in the room and then he passed away.
We the family are glad he was at home. My doctor said his nightmare is to die in an ambulance on the way to the hospital. Let your father decide and be there to support him, would be my advice.
I understand what your father is going through, I also was with my husband for 38 years and I miss him dreadfully. One of the few consolations in the whole thing is that he was with us at home when he died; he would not have gone into hospital again however serious his situations.
be strong for both your mother and your father.
Take care of yourself
PatriciaMy husband had something similar. They did drain the ascities (7 litres) and it made him more comfortable but it recurred within a couple of week, when they drained another 5litres. It did affect him badly making him very weak and unable to eat. The drainage is a very simple procedure and does make the patient more comfortable but it does deprive them of protein and minerals. The drainage can also be a big shock to the system and in my husband’s case he had very low blood pressure as a result. It’s a difficult call.
M also had coughing and brought up frothy clear mucous. These things happened a few days before he died, so it may be as well to prepare yourselves. I hope that your mother will be more comfortable and my thoughts and prayers are with you.
Hi Jon,
I wouldn’t be concerned about just drawing the Gemsar. Our nurse liaison at the Royal Free was research nurse on the stage 11 of this trial. She advised us not to go on the trial and just to have the gemcitabane which was the standard treatment at the Free. She said although the gemcitabane is well tolerated, cisplatin has nasty side effects for very little overall gain.Prof Cunningham is regarded as the leading light in liver oncology and I don’t think you can do better than the Marsden, so it looks like you are in good hands.
Good luck eith your treatments
PatriciaHi Tiffany
My lifeline has been my work. I run a website for parents and the office in in my home. As soon as I felt able, I went back to work. At first I was just sitting there going through the motions, unable to concentrate but gradually I have been able to get engaged.It’s become easier and keeps me occupied and stops me from thinking too much. I think if I had been just around the house I would have found it very difficult not to get depressed. I live in London – so do my children so I see them at least once a week and sometimes more. They have beeme very concerned and supportive. I guess they see that I am not as strong and invulnerable as they thought – as children often think about their parents. I have lived in my house for 21 years and have good neighbours who have been very supportive and have lots of good friends.
What I have noticed is that in the first 2 months, many people phoned and invited me to eat with them, that has tailed off and what I realise is that now I have to be the instigator; I have to phone and make plans with my friends otherwise I am sitting at home waiting for something to happen and missing M terribly.I do feel that the worst hasn’t hit me yet. The realisation that the future we had planned together – the trips we were going to take, moving house, having grandchildren I haven’t really faced that yet. As I write this I am crying but there are a few things that can help. I realise that my grief is unavoidable. I even fear that I am pushing it down and that may not be good, but I can only do what I am doing.
After M died I went with two close friends for a walk to a part of Hampstead Heath. M & I had never visited – though many people told us how lovely it was. It was beautiful and it was a clear sunny day. I cried that M was not with me to take pleasure in the day. I told my sister who said – Yes it’s sad but it is still beautiful’ So I hold on to the thought that life still has many things to enjoy, even if the enjoyment is less for not being shared.
My Son: ‘We have been the same as a family since Hannah was born (my youngest). We were five and now we are four but a family is an organic thing, other people join our family and we will go on. I found that helpful.
Other thoughts I find helpful:
He had no pain
He had a full and very interesting life (unlike my son’s friend who died in a car accident at 20)
Many people loved him
My children had their father all through their childhood and beyond
He would not want me to give up on life
in sum , I miss him so much because I loved him so much but ‘better to have loved and lost than never to have loved at all!’This may not be of any help to your aunt but I hope so.
Patricia
My husband also had the coughing. He brought up clear mucous which was something he hadn’t done before. His cousin who was with me and is a doctor said it had something to do with stress on the kidneys.
I don’t really know how to say this but…These are symptoms that my husband has in the last few days of his life. I called my children to be with him and we were together for three days where he was conscious and able to talk to us. We looked at family photographs and the children massaged his feet and back. We all feel fortunate that we were able to do so. It may be different for your mother but we had very little time and we are thankful that we were with him at home.
Your grandfather’s end seems very like my husbands, who also simply drifted away, without pain. Until very close to the end he was in touch with the family and able to talk to us. The oncologist of a friend says that compared to other cancers, liver cancers are usually relatively pain free, which is something to be thankful for.
M had a cancer nurse who visited him regularly. One of the things she said over and over again, was that he had one major thing in his favour in the fight against this disease, he had no pain! Once there is pain, then it is very difficult to do anything as the pain takes over.
I never realised how important this was to us -the survivors- that he had a pain free death but so many people told us horrible stories of their own loved ones, that we have come to see how fortunate my husband and we were in this respect.
I did a search and found
http://www.ajronline.org/cgi/content/abstract/165/6/1427
which says,‘This essay reviews the appearances of peripheral cholangiocarcinoma and discusses the various imaging techniques that can be used to evaluate this unusual tumor that is often resectable and potentially curable’.
That’s encouraging!! Good luck to you
Hi Jon,
What is ‘peripheral’ cc?
What stage is it?
Stable is good though shrinking is better!! think positive.Are they considering a resection?
Which hospital are you at? and who is the consultant?
My husband was treated initially at the Royal Free in Hampstead and then at UCH
Patricia
I think you should speak to your doctor about the ascites. It can become really uncomfortable and the abdomen becomes rock hard. It puts stress on the kidneys too. Certainly my husband felt much better after the drainage but it recurred within two weeks. As far as I have read there is nothing that can prevent it occurring again since it is thought to be due to metastases in the peritoneum – lining of the abdomen. The best thing is to keep comfortable and at ease. Your mother’s situation sounds rather like my husbands. One consolation to me was that although he was uncomfortable he had no pain and he was able to talk to us and we could make him laugh and feel good.
I wish your mother all the best and you and your family strength and courage.Patricia
My husband had very severe cachexia. There is a post on the experiences section about it. I gave him build up drinks which stabilised his weight until he became really severely ill and then he was unable to eat anything and even when it seemed there was no more weight to lose, he still got thinner. THis is one of the common side effects of this disease and one of the most difficult to deal with.
This is ascites. My husband also had 7 litres of fluid drained and then 2 weeks later another 5. What they don’t tell you is this is not just removing liquid as you might when draining the bath. It affects blood pressure and protein levels which have to be replaced. My husband had to be readmitted to hospital when his BP fell very significantly. Monitor the BP at home. Nor did they tell us to eat protien rich foods to replace lost protein.
I hope your father will make good progress.Hi Jules
Patricia here. I look into this site almost everyday. I am really pleased that your dad is doing well. The fact that he has an appetite and is able to take exercise is excellent, he has quality of life.
I guess what happens depends on how the cancer metastatises . In my husband’s case he seems to have had a lot of internal bleeding high in his GI tract, that we were unaware of. The doctor thinks that the steroids for his appetite may have caused internal bleeding from an ulcer he may have had, or that the cancer spread and caused a vein/artery to leak.
I get through each day by focussing on my work and in the evenings I have good friends and my family for company. We have grown closer and spend more time together now. I miss him terribly. I still have the sense of shock that this whole thing could have happened so quickly only six months from diagnosis.
CC is a vicious disease When I look at this site and see some of you are having some success in fighting it, it gives me hope – even though it is too late for us.
Keep fighting Jules and Jules’ dad. From my experience a positive attitude is a very powerful weapon.
Good luck to everyone else. Ranner, how is your father doing?No not really. I have had a bad week, since last Thursday day when M went into hospital to have his ascites drained. They kept him in overnight because his blood pressure was low after the procedure – which he hates; he can’t sleep loathes hospital food and just gets more and more irritable. In the end they let him out on Friday.
Sat, he slept most of the morning which I worried about and he didn’t eat and had an attack of the rigors (severe shivering) which is often the sign of an infection. I worried that his blood pressure might have gone down again, so I asked a friend who is a doctor to come over and take his blood pressure. It was very low so I phoned the duty oncologist and he said call a blue light ambulance!! When I told M he had to go back into hospital he flatly refused. I checked again with the oncologist and he said he should come in and if he had an infection and low BP he could have a stroke.
Anyway after a great deal of persusion we finally convinced him to go, which was just as well because he had a very high white blood cell count and a nasty urinary infection. The kept him in on an IV antibiotic and rehydration fluids for 2 nights.
Now he is back home but not well. He sleeps most of the day but what worries me most is that he is hardly eating. At least today he is drinking — for a couple of days he was barely drinking – a factor which contributed to his low BP He is so thin, I can feel all his skeleton and still he can’t eat. On Wednesday he had a very bad attack of hiccups and burping for 2 hoursand brought up mucous and froth (Does anyone else have any symptoms like this?) Then he was sick – despite having nothing in his stomach and brought up what looked like dried blood in the mucuous. This was horrible he was in a great deal of distress – fortunately no pain. Today he had 2 spoonfuls of yoghourt, a cracker, a bit a blended fruit and some lentil soup and a little bread and butter. The hiccups are continuing but despite getting something from our GP to treat it, he won’t take the medicine. He can barely stand and his voice is very soft and breathy.
I have no idea what to expect. Couls he just gets weaker and weaker. I have read that 30% of cancer sufferers die of starvation. Or could this dip be followed by an improvement? Does anyone have any idea?
On the brighter side on Thursday we made a trip to see an integrated medicine practioner. She is a qualified doctor who believes in both orthodox approaches (where suitable ) and complementary treatments too. What a relief!!!! She listen to us for an hour and talked about all the possibilities and for the first time since this whole things started we felt we had someone who cared and was interested in helping M heal. You know his NHS consultant so you can imagine what a relief it was after him
M had a blood test which has gone off to Greece for analysis. This will tell us what treatments both orthodox and alternative are likely to be effective. WE will discuss the results with her in 10 days time and then start with appropriate treatments. I have confidence in her and trust her which is a new feeling. Let’s hope M will be strong enough to go forward with this.
I was really sorry to hear about your dad, I wanted to respond at the time but as you can see things have been very difficult here. I hope the chemo goes well and that both you and he can keep hopeful. Best wishes to you both
PatriciaMy husband is not having chemo and takes only the supplements mentioned above. I don’t know if it is working or not, all I can say is that the last liver function tests were practically normal. I take the view if it definitely won’t do harm and may do good, we will go for it.
Hi Caroline
Have you lost a lot of weight? do you have an appetite? do you get fatigued easily?
My husband has lost 10% of his weight and looks skeletal. He eats well at breakfast but less and less throughout the day.
were the steroids to encourage your appetite and have you gained any weight as a consequence? I would just like to see a little weight gain because he is so weak.
Last week he had ascites and they drained 7 litres of fluid from his abdomen.
It seems to be one thing after another.Best wishes
Patricia
