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No, my husband didn’t have much abdominal pain, the discomfort came from the fact he had no cushioning on his buttocks. He was weak but well enough to be up and about so being unable to sit comfortably was a real issue.
I wish you and your mother all the best and I am sorry I couldn’t be more helpful.
Patricia.
My husband had percutaneous drains after leaving hospital afer a failed resection.
he had them becasue they were planning Photodynamic therapy to open up the bile duct. They used the same tubes as the drains.
The external drain was pretty straightforward and can be flushed if it gets blocked. They needed very little maintenance.
My husband had four attempts at ecrp before they successfully inseted a stent. Personally and I have no evidence at all for this, I think that trying to push the stent through the tumour – which was obviously very dense, made his overall situation worse, I think it seeded the cancer elsewhere.
PatriciaKris,
You said it all when you said that your husband wanted to try and it is his decision more than anyone else’s. I wish him all the best and hope that he will have a good result.
My thoughts are with you.
PatriciaToday I spent all morning in a meeting with a cancer care nurse (a work matter) She works for an organisation that nurses cancer patients in their own home, both because they are specialist nurses and can help the patient but also to support the carers, both physically and emotionally. She told me that she sees many patients who regret having chemotherapy since it detracts from their quality of life with very little extension of life. I know that it a really difficult call but sometimes the cost is too high.
You wrote,
… the chemo Dr. and he said this chemo can prolong his life and possibly GIVE him quality of life if it keeps the cancer at bay. I told him he hasn’t been sick,etc…..he said that will be coming to an end soon.
Frankly I don’t think there is enough known about the way in which this disease develops for your doctor to be so sure. All I can say is that my husband had no pain or sickness. he had swelling in this feet, ascities and rigors and severe weight loss but no pain. He was conscious to the end, had friends and family visiting the day before he died. He refused chemo, in fact at the end he refused even to go to hospital to have his ascites drained.
Your husband has been put on a clinical trial. Your doctor has no idea how he will react to the drugs, it is after all a trial. I can’t say I know what I would do in your shoes but doing nothing is an alternative.
I have to say that my husband’s experience with the NHS was different, as far as speed and treatment was concerned. He was diagnosed on Nov 5th 2005 and had an operation on Nov 21st. In the intervening period, he had ercp to open the bile duct (failed) 3 CAT scans, a laporascopy and an MRI scan. He was treated by the liver team at a London hospital on the advice of a private consultant. His view was that because this is a rare cancer that my husband should not have private treatment, since he needed the skills of a multi-disciplinary team who were used to working together and who would evaluate as a team. The nurses are also specialist in liver disease.
HOWEVER once the treatment could no longer procede because on operating they found mets on the omentum, the subsequent care in hospital was not good. Food was appalling, not enough nurses, impossible to sleep in a ward of 8 etcI have concluded from my own experience and those of other people I know that if you need treatment where they can fix you up and send you home as with heart disease or hip transplant, then the NHS works well but with chronic disease especially cancer where there is no quick fix, then you have a point.
Have you heard of the Bristol Cancer Centre? They are a centre for complementary approaches to cancer care. My husband and I went there and found it very uplifting.
PatriciaRhonda,
I read in your post something I can identify with – a something I have heard very little about from other carers.My husband was a lovely kind and completely non-aggressive man, yet during his illness he was often unkind to me and occasionally to the children. I have read on other boards about sufferers who are vile to their loved ones. I think that he felt angry about what had happened to him, scared and unhappy and I was the closest (and the strongest) person to express it to. I believe that one reason for his anger was his belief that throughout his life he had always put other people’s needs before his own. He thought that this was a one of the causes of the cancer – that he internalised anger and other strong emotions.
There was nothing I could do about it. Occassionally I reacted and got angry myself. Now of course I regret it greatly… but I am not beating myself up about it because I know that if my husband were able to reflect on what happened, he would also feel very sorry about how he behaved at times.
This is an appalling illness and changes everything in a relationship. All we carers can do is our best.
I hope that help a little,
Good luck to you and your husband
Patricia.My sincere condolences to you and your family. There is nothing anyone can say that makes the pain of the loss any easier but she had a a relatively short illness and peaceful death with you close by. My husband’s death is still unbearable for me but I do take some solace in the nature of his passing, peacefully and without pain.
PatriciaProf Lodge is at Leed University (NHS) Hospital I believe.
There a six centres of excellence for liver surgery in the UK.
My husband was treated at University College Hospital in London, which is one of the hospitals. Kings is the other London Hospital I think.There are only 600 cases of cc in the UK each year so finding someone with the relevant surgical experience is quite difficult. Oncologists in the UK treat routinely with gemcitabine or 5FU. Avestin and other more experimental drugs which are widely used in the US are almost unheard of in the NHS.
There are two clinical drug trials I know of in the UK, one at UCH and the other in Leicester.
Whatever you do, I wish your mother all the best.
PatriciaStacie & Rick,
My heartfelt condolences to you and your family. I find I am crying as I write this and although I never knew Mark I read the blog and formed an impression of a loving warm and supportive family and feel something of your grief and loss.
This site is a wonderful memorial to him. I hope it is some consolation to you to know that not only will he live on in the hearts and memory of family and friends, but also in a world wide community of cc suffers and their carers.
Patricia
I support what JeffG has said. Having been through a similar situation with my husband I understand your predicament. There are some things that you can do at this stage and they are not medical. Make him comfortable, show him you love him, (my husband’s request at this stage was for what he called ‘loving touch’) Have a warm and positive attitude, that’s ‘chemotherapy for the soul’. If he feels better emotionally and psychologically, that’s a result in my book
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My thoughts and sympathies are with you. You can make a difference although it may not be what you thought.
Patricia.It seems to me that everyone’s symptoms are different and there is no ‘usual’ way. My husband’s decline at the end was quite quick and painless. Since he didn’t have any chemotherapy he didn’t have any of the side effects. Ascities – they treated by drainage, rigors (severe trembling) – I just piled many covers on him until the trembling stopped, fatigue – I don’t think there is anything that can be done about that.
One week before he died my husband was still having business meetings.
Thursday before he died we went to see an alternative doctor. He was able to walk short distance only to her surgery. When he came home he was feeling more positive and he asked for a fried egg and beans, to try and build up his weight. (At this time he was skin and bone.) This was the last time he ate anything of substance. He climbed up the stairs to bed. At this point he was weak but alert and mobile.
The next day (Friday) he started to decline. He wasn’t able to eat or drink anything but he was awake able to converse and had a visitor. I guess I must have realised that things were nearing the end because on Sat I asked the children to come home and stay.
Saturday Sunday and Monday he ate nothing and was only able to sip a little liquid but he was able to talk, On Monday he had four visitors and was quite lively. His ascities had been getting worse and he was feeling uncomfortable. He hadn’t eaten anything since Friday and I was really worried. On Monday night he started to pass stools like tar, which I now know to be a sign of internal bleeding high in the GI system. Either a result of the tumour growing into the vein or maybe the single (low dose) steroids he took to stimulate his appetite, caused bleeding from a stomach ulcer, no-one will ever know.
On Tuesday morning he asked me to arrange for his ascites to be drained but because he wasn’t prepared to go to hospital I tried to arrange it at home. One minute he was talking to me and a minute later he died.. What I think – and don’t know – is that this internal bleeding in his already very weakened state, caused organ failure.
I don’t know what to say to you. if the chemo helps alleviate symptoms then clearly it is of value, otherwise …. Trips to the hospital must be exhausting in themselves not to mention that effects of the chemo. If I were in your shoes I would want to find someone who understood about caring for the dying and try make her last weeks as comfortable as possible.
I hope this has been a little help and my thoughts are with you and your mother.
My husband had ascites for the last five or six weeks of his life. They drained 7 litres and then a couple of weeks later 5 and on the day he died we were preparing to drain again. The fluid build-up became quicker. I think one indicator of ascities is the hardness of the swelling. My husband’s stomach was stretched like a drum prior to the drainage.
Draining is not without risk, as the loss of so much fluid is a shock to the system and may cause blood pressure to fall to a dangerous level. Also I believe there is a loss of proteins and minerals which the body finds hard to adjust to.I agree with your decision to make her quality of life the best it can be at this stage.
My husband was regularly visited by an nurse from India whom he met in the hospital. She was experienced in nursing cancer patients but also had a different and more indian approach to terminal illness. In addition to nursing care she would sit with patients listening to them when she could, soothing them and making them as comfortable as possible. In UK hospitals this is not usually a part of hospital care. Too much emphasis is placed on doing things to patients and not enough on being with them. She stressed the importance of family being around and expressing their love for the person who is dying; this she sees as a validation of the life they lived and a great comfort to a person who knows their life is at an end.I don’t think that you are a ‘downer’ for all those who are fighting. They are at a different stage and make different choices. At some point my husband made a choice not to go into a hospital again, because his experiences were all so negative. I don’t think the outcome would have been different had he gone back into hospital. I think it would have just prolonged the process, increased his discomfort and sense of isolation. You can read about his end in the In Rememberance section – A good death.
I hope your mother enjoys your love and care and the presence of her family and the joy of her granddaughter and her final days are filled with love and compassion and an easeful death.
Since my husband died five months ago I have had very few dreams. I would like to share a dream I had last night.
I dreamed that I was in a house and in the middle of the house a very large tree was growing. Later I saw that it had been removed and a large crater was left where the tree used to be. I was at the bottom of the hole facing into the crater and holding on for dear life to the vegetation. Many people were leaning over the side of the hole and stretching their hands to pull me out. I was very scared because I thought that the crater was on the edge of a cliff and if I let go of what I was holding on to, I would fall over the cliff.
In the end, I let go and took the hands of the people who reached out to me and they started to pull me up. As they did so, I looked back over my shoulder and saw there was no cliff but just a gently rolling hill side.
