ukmember

Could your father go home and be cared for with the family?
If he doesn’t need medical treatment then perhaps home is the best place to be.

From my experience with my husband, draining ascities that can lower blood pressure still further although it does alleviate discomfort and shortness of breath.

What does your father say? my own experience is that I wasn’t listening to my husband because I was desperately trying to find the thing that would make it all better. My husband was very clear at the end that he just wanted us to be with him and to stop trying to feed him, find ‘cures’ etc.

Whatever you decide I wish you and your father all the best.
Patricia

I lost my husband four months ago and in some ways it does get easier and in some ways it is more difficult, as the realisation that he is gone forever seeps in. The raw pain diminishes but I still get waves of disbelief that the man who was at my side for 38 years, is not there. I feel like a part of me has gone.

There are still things that I enjoy and that make life worth living, being with my children and sharing a meal with them, the company of good friends -and that keeps me going, and I know for certain that my husband would have wanted me to get on with my life.

I cry for the future that he won’t have – the children getting married, grandchildren, lovely days, and for our future together. But I recognise that the pain will fade and life will go on and I take pride in the things that he did for us, the love that he gave us and the memories he left to us.

Your father’s phrase ‘death is a natural thing’ shows that he had reached some kind of understanding in his own mind and wanted you to take comfort from that fact. What a wise man.

You may have read on other posts that my husband refused chemo after his resection was aborted. He died a pain free death in May 06 six months after he was diagnosed. Like your mother he was very health conscious, ate well and exercised.
See my post In Rememberance section.

I think it is a very difficult call whether to have chemo or not. If you read the blogs they show that for the terrible downsides of chemo there are also periods of remission for some people, where they are able to take breaks and enjoy some quality of life. Young people are better able to withstand the chemo than older people and at 67 my husband didn’t feel that -healthy though he was, his body could cope.

I have concluded that with chemo I would try it and if the side effects became too severe just stop it. We were warned (not by the oncologist but by the nurse-liaison) that oxaliplatin has severe side effects and to decline it, whereas Gemsar is well tolerated. I think that my husband should have given it a chance while he moved to more holistic treatments.

I have a daughter Hannah who is 25, also very young to lose her dad. I will ask her to reply to your post as I have found that sharing helps.

From my experience I think that severe and repeated ascites is associated with late stage cc. My husband had some ascities after his operation in December and then nothing until April when he had 7 litres drained and then 5 litres two weeks later and on the day thta he died we were making arrangements to have the acites drained yet again. It’s not a procedure without risk it deprives the body of protein and can severely reduce blood pressure.
According to the blogs som people in the US are taking something call Laxcis (??) for o’water retention’ I don’t know if that is oedema or ascities.
I’m sorry I can’t be more helpful but my thoughts are with you and your father at this difficult time.
Patricia

I sympathise with you in your position. My husband was diagnosed on Nov 5th 2005 and died May 2nd 2006. On Nov 21st they operated to do a resection but found that the cancer had spread to parts of the body not visible with diagnostic tests. One month later my husband came home. He also declined chemo, believing that at his age (66) it would weaken his total immune system and he would be no better off in the long run. We decided on other more holistic approaches but it was not enough.

Since then I have been visiting this site regularly. I follow the discussions which are mostly about the various chemotherapies that are being used to try to delay the onset on the disease. There is no cure. Resection with clear margins seems to be the best option but is not available to everyone. For everyone else chemo can postpone the onset, – a decision that has to be balenced against the quality of life during the process of treatment which has inevitable painful/fatiguing side effects.

Reading the discussions here, I had started to think that perhaps my husband should have at least started on the chemo, since it would have probably extended his life. However I have been reading the blogs over the last week and I have shifted my opinion somewhat. It seems to me that once people take the medical route, it is often like a row of dominoes as one treatment causes another problem, more intervention and more pain and discomfort. The initial treatment seems to work but there seems to be a tipping point where the disadvantages start to outweigh the advantages. M’s experience of hospital made him refuse to even consider being readmitted to hospital. In the end he had a gentle death. (see In remembrance) We, his family were in control and able to do what he wanted rather than being in the hands of the medics with ever more piecemeal treatments to deal with the consequnces of the previous treatments.

I do wonder if the mantra of ‘going on fighting’ when the battle is really lost is best for cc sufferers. When treatments are no longer working, pain fatigue and discomfort become everyday experience and other serious complaints are presenting one after another, is it the best thing to accept the inevitable and seek a ‘good death’. For myself I am certain that it’s what I would want (although I know that there are people for whom however uncomfortable, life is everything)

My husband was treated by an Indian nurse whose view was the death is part of life and the move between the two should be to help dying accept and move on, not to go on fighting with increasingly intrusive and painful treatments – often unproven.

What I now think is that
M should have at least started with gemcitabane which is usually well tolerated. If the consequences were unacceptable to him then he could have stopped it when he wanted.
We should have started earlier with our holistic doctor, since she was very busy and we had to wait a long time for an appointment.
And finally to stop trying to ‘save’ him with new treatments, pills and potions. What he wanted from me was to talk to him, sit with him, do relaxation together and gentle exercise, massage his body, read to him, light scented candles and play music. Play backgammon and chess with him , get friends to visit, look at the family photos and videos, do everything to make those last days precious and enjoyable.

There are far more treatments available in the US (we are in the UK) but all of them with side effects. I feel that reading the blogs, they did extend life and the families were able to have weekends away together which was a great outcome but it seemed to me that a time came when the issue became one of acceptance and making the life of the patient easier in his final days.

I would urge you to read the blogs for a fuller picture of the disease and its development.

Teresa
Having lost my beloved husband on May 2nd a few days after your son died I can understand your pain and send you my heartfelt sympathies. There are no words that can help lessen your anguish I know but I find some consolation in the fact that my husbands death was pain free and he died at home surrounded by all the people he loved most.
Like you I still visit this site on a daily basis – I don’t know why; although it is too late for my husband I share in the hopes of those people who are battling cc, that something will be found to deal with this vicious disease.
Best wishes to you and your family,
Patricia

Hi Jon,
If you have a good GP let him act as the intermediary and I think he can give you the referral. Do you have a nurse liaison at the Marsden? We had one at the Royal Free and she was excellent. She arranged for us to get all the scans and tests and advised on how to proceed when we wanted to have private treatment.
Don’t be put off; you are entitled to a second opinion and your exisiting consultant (prof Cunningham??) may be miffed but there’s not much he can do if you want to go ahead.
Good luck

It’s a cliche for the living that we should live each day as if it was our last. For those who are near the end of their lives, we the living should try to make sure that every minute is a good one. For me that means having family around me, talking about our lives and feeling loved and cherished.
I am thinking of you and your mother and send you my very best wishes.
P