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(7 replies, posted in Grief Management)

Carol
Thank you for your post. I understand exactly what you feel and in your case I can see that you are being hard on yourself  I know that I am also being hard on myself - but what my head says and what my heart feels are sometimes different. I wonder if we 'doers' always feel a sense of guilt that our doing wasn't enough. Those who are able to accept and prepare for death, are able to give up gracefully.
Patricia

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(7 replies, posted in Grief Management)

It's almost two years since my husband died. I have got used to the fact that he is not around and am managing quite well with the help of family and friends. But other feelings have taken over.

I feel guilty much of the time. I seem only to remember the times I didn't give the type of care he wanted. I was too busy looking for a cure to spend real time with him. I regret the fact that he bought dvds to cheer himself up - they weren't my taste - but why didn't I just sit with him and enjoy them anyway! He loved music and would listen alone, why didn't I listen with him? I took food to the hospital - sometimes twice a day - but now I think that I didn't put enough love into making it for him.

why was I managing the family to support him, massage his back and feet and why didn't I do more of this kind of thing myself? He kept a notebook while he was in hospital and in it he said that I was 'key to his recovery' I know I couldn't have saved him but I feel I didn't see enough and do enough. Most of all, when he said to me, the day before he died,  'I do love you you know.' why why why did I say 'No, no you don't. you're horrible to me'.

I have a friend whose husband has been very sick for three years and is coming to the end of his life. He is very critical of her angry and unloving, though I am sure he loves her after 40 years of marriage. I want to say to her however angry and resentful you feel, remember the few weeks you have now are all both of you have left, to be together, to do things that bring you together and leave you with good memories.

Patricia

I noticed that my husband bacame tired more easily. All our married life we had sleep patterns that were very similar; if I got tired in the afternoon he would also be tired and have a nap. I said to him 'You're sleeping a lot.' and he dismissed it but I thought to myself 'I wonder if it's cancer?'

He also lost weight on his buttocks which I noticed and thought well he's getting on and older men lose weight on their behinds! Last week I looked at photos which were taken three or four weeks before his diagnosis and before any symptoms. I can see that he has lost weight and also the photo is of the whole family at the dinner table and I can see that he is somewhat removed from us all.

My husband became quite angry with me in particular and was sometimes horrible to me, not shouting or cruel but ungrateful and unpredictable. I haven't read about this on this board before, I suppose we carers feel guilty about saying negative things about our loved ones when they are so ill, it's not really acceptable. 

I think that we cannot know until we are there, what this whole experience means to a fit and healthy person -suddenly facing the end of life. There is so little hope for most people who get this illness, compared with say breast cancer or colon cancer, that it is not surprising that a life changing revelation should produce a personality change.

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(15 replies, posted in In Remembrance)

I am so sorry to hear about Caroline's death. I foloowed her blog and she seemed so vibrant and full of life that I thought that by sheer will alone, she would survive. My thoughts are with her family and friends at this difficult time.
Patricia

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(4 replies, posted in In Remembrance)

This is the tribute my daughter read at her father's funeral. Even after 18 months it makes me weep.


I want to say thank you to my father for just a few of the things that he gave me:

Thank you for your humour
Thank you for your love of music
Thank you for your interest in people
And for your love of learning.

Thank you for dancing with me
Thank you for letting me sit on your shoulders
Thank you for arguing about politics on the way to school
And for letting me cut your hair.

Thank you for being so brave.

Thank you for working so hard
Thank you for being so proud of me

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(19 replies, posted in Grief Management)

Hi everyone

I think that our experiences are as different as we are. I had counselling immediately after M' death and I felt little or no benefit - and that's not a reflection on the counsellor. I have never felt anger; my husband would have given anything to stay with us longer -he had no choice, so why be angry about it? I have written before about my work and my family and how both of them keep me engaged and involved in the world, during the period since his death. It seems to me that it also allowed me to paper over the cracks and to set aside the emotions that were  there.

I am now 18 months post M's death and in some ways I feel worse now. I went to a wedding anniversary party yesterday and someone read a beautiful poem by Khalil Gibran about marriage and there were tears rolling down my face. People spoke about him and I felt my eyes filling with tears. It's as if my feelings were a great pool and I am walking over them on a narrow and shaky bridge. IMany people have told me that the second year is in many ways worse than the first. I am thinking of having some bereavment couselling now. I have accepted his death. I am not expecting to see him but the feelings are still there and as strong as ever.

Kate
How special your mother was and how special your remembering of her is. I feel like I knew her from your account.
As you know my husband died without pain so it doesn't always accompany cc. For that I am truely grateful especially when I read your heart rending account of your brave mother's experience. The pain indignity and loss of control are things that I fear about my own death and I can understand your mother's fury at what was happening to her. My husband was unable to face up to what was happening and never spoke of his own death except on 2 occasions, one to say I am not afraid to die but I want to die with dignity. he did. The other to tell me that I should make sure there was a good turn out at his funeral. He didn't have to say that because so many people came simply because of the kind of man he was.

Stay strong and keep your mother's memory strong with her grandchildren and in time with your grandchildren. I think that is the best memorial
Patricia

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(8 replies, posted in General Discussion)

I am grateful that he is not in pain, and is not vomiting.  Doesn't that seem like so little to be grateful for?  But I wonder, is that what comes next?

My husband had extreme weight loss, ascitites, puffy ankles but no pain or vomiting - except immediately before he died. It appears to take people in diffrent ways. My husband had no chemo so he had none of the problems associated with side effects of chemo.

I send you all my best wishes and hope your father has a peaceful end surrounded by those he loved.
Patricia

When my husband died I took a box my daughter had made and started to create a memory box for him. I put in all the letters of condolence I received, videos and photos that people sent and I started a special photograph album meself. Have I ever opened it? no I can't. I don't know why. I am scared that I will be overwhelmed. A friend posted a video clip on u-tube and I look at that occasionally. I see all his little mannerisms and way of laughing and his teasing manner but I can't go deep into my own memories.

I feel like I exist on two levels On the surface I am busy and apparently getting on with life. I have recognised that he has gone and am becoming used to being alone - but every so often I get side swiped by the thought that 'He's gone!! How?'

But below my acceptance is a great well of grief that makes me cry when I think about him or as I am writing this now.

Patricia

hi cdr
I have nothing to say that can help you except to say that I read your post and think of you and your son throughout the day.
I think that most of the posters on this forum are carers rather than sufferers and we seldom get an sight into what torment those who have this illness endure.
I often think of my husband who never spoke about his feelings and I ask myself what it was like for him. Sometimes I try to imagine that I myself had a life threatening illness but I always end up in the same place -- telling myself that unless it's 'real' that it is literally unimaginable.
I admire your humour which comes out in your posts but I am aware that it is a veneer over the anguish you must be experiencing for yourself and especially for your son.
I can't know what you are going through but I hope that you find even more strength and humour to help you.
Patricia

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(11 replies, posted in General Discussion)

I feel very strongly that you have to stay with your husband. Your daughter has her own husband and a joyous occasion to celebrate, she will hvae so many things to do, people to see, etc. Does she understand how ill your husband really is? (is your husband her father?)

I would never have dreamed of leaving my husband when he was ill. When he became ill before diagnosis, - he couldn't eat and felt sick - I was extremely busy at work and I really didn't give him enough attention. When I began to realise that this was serious and became worried, my husband told me (sobbing) that he had never 'felt so lonely in his life' as he had felt during that week.  Serious illness isolates the sufferers and they need somone to be there for them.

Your husband has a very serious illness and he knows the outlook is poor. I am sure he feels afraid depressed and isolated - even from those he loves. You are his pillar of strength, his support and consolation, - bluntly he needs you more than your daughter.

Also, his state of mind is an important factor in his ability to deal with his illness. If he is left alone he may easily become depressed and angry. I think unequivocally you should stay.

On a practical point, why not set up up video cam and link with each other through your computers. One of my neighbours talks to his son in Canada (from the UK)weekly over the internet. With video cams he is able to see his new grandchild growing and the contact feels more 'real'.

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(24 replies, posted in In Remembrance)

Dear Jules
I am so very sorry to hear of your father's death. There is nothing I can say that will in any way make your grief easier to bear.  There is no consolation when someone we love is taken away in this untimely way. My thought are with you and your family at this difficult time.
I would like to add that I really admired the way you and your dad worked as a team and I am certain that it gave him strength to know that you were always at his side in the dark and difficult days.
Patricia

Marion

I can so much sympathise with your post. I am now 16months on from my husband's death I feel worse in some way as the permanence of what has happened has seeped in. I spoke to a grief counsellor today and she told me that the second year is usually worse than the first and that is my experience. Being busy managed to keep the grieving at bay in the beginning, people were concerned and phoned and invited me, now they seem to imply that I should move on, I also think I should 'move on' but to where?

Like you my kids say 'You have us' and I am very thankful for that but......I brought them up to become independent, to fly the nest. Though they grieve for him, the future they imagined was one in which he was on the sidelines as they built their own families. I expected to remain in the nest with my mate and now I don't know what to do without him.
Please keep posting, it consoles me to understand that I am not alone.

Patricia

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(15 replies, posted in Grief Management)

You wrote
They were busy doing the business of dying, and we can never go there with them and understand completely what they were thinking.

I think this is so true. Just as we are conflicted they also are conflicted. They know they are seriously ill but they hope they can survive. Maybe they want to say goodbye but that is too final it means giving up on that little sliver of hope. Maybe their illness and the thought of death is all consuming and all they can think about is their own predicament. This is particulalry true of those who have serious pain.

My husband had a nurse who was experienced in dealing with cancer patients. She used to say to him 'Now you can help yourself because you have no pain. When the pain comes, all you can do is endure.' I guess for those who had pain at the end they were unable to rise above it and reach out to the survivors, their carers and loved ones.

We did our best out of love in a situation we had never faced before. That's all we can say.
My very best wishes to you
Patricia

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(13 replies, posted in General Discussion)

Oh Jules!! just reading your posts I have tears in my eyes. I have followed your father's progress over the months and I was so hopeful that he would be able to if not beat -at least take some control over this disease.

Your father and my husband were diagnosed at roughly the same time, we joined this forum at roughly the same time, and even saw the same oncologist.   After my husband's death only 6months after diagnosis, I was really rooting for your dad and you. I am so sorry to hear that he has relapsed.

Give him my very best wishes and I will be thinking of you.
Patricia.

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(11 replies, posted in In Remembrance)

I can so much sympathise with your feeling. My husband of 33 years died 16 months ago and sometimes I feel worse that I did in the early months. I am getting used to life without him, I don't expect to see him around the house or at my side when I go walking and I can't recall the sound of his voice but I am weeping as I write this. The feelings don't seem to have changed - the scars haven't healed over. Whoever said time is a healer didn't say how long it takes to work.

In my head I can be grateful for the time we had together but I still have that sense of unreality. Like you, I look at couples of my age who are doing things together, like travelling -even just walking in the park and I feel so alone! I have great kids and I am able to see them weekly I have good friends but there is a hole at the centre of my world. I feel like half a person.
By nature I am a do-er and I have been busy. Maybe that's the problem I haven't faced up to the reality but I keep it supressed.
I think about death all the time not suicidal thoughts but facing up to the reality. I'm not scared to die. I don't know if I believe in life after death but I really hope that there is something and I will see him again.
If there is a little consolation for me it's in the phrase 'Better to have loved and lost than never to have loved at all' and the more you love the deeper the loss.
My thoughts are with you.

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(15 replies, posted in Grief Management)

Joyce
It's impossible to know what to do for the best. Looking back now I wish that I had not shown my distress to my husband. I think it was an extra burden on him when I broke down and wept.
There is a post somewhere on these forums from a man in India and he said how he admired the strength of his wife in not showing how bad she was feeling. I told my husband and he agreed that it would be easier not to have to face the grief of loved ones.
It's now 16months since my husband died and I go over so many things in my mind. The conclusion I have come to is that there is no 'right' way to behave. To show love means to show weakness and my husband both wanted to experience both my strength and my vulnerability.
Several cc sufferers who contribute to this forum often mention their guilt at what their loved ones are enduring. Like most human situations it is a mixture of emotions - we can only do what seems best at the time.
Patricia

Jules
My best wishes to you and your father and hope he is feeling better soon.
Patricia

The day before my husband died he stopped eating and drinking completely.
At that point I called my children I just had a feeling.

The night before he also passed stools that were black and tarry (sign of internal bleeding) and he had a very swollen abdomen and less swollen feet and ankles.  Unlike Joyce's experience there was very little sign that he was about to die in the few minutes before. He vomited and then stared at me very intently and then looked off into the distance as if he was seeing something else, and then fell back on the pillow and died.

Don't hesitate to call your children, they would want to be there and he would want to see them.

Be strong and all my best wishes are for you and your family. May your husband have a peaceful death with all he loved around him.

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(5 replies, posted in Introductions!)

I have noticed that it mostly carers who come to this website. This accords with my own experience. My husband didn't want to do the research or even talk about options - except when forced to. His way of dealing with it was to pretend that it wasn't happening. I think everyone has their own way of dealing with what is happening and pretending it isn't happening, is just another way.

My husband was treated in the UK (The Royal Free and UCH in London) and it is almost impossible to get any 'new' treatments for cc. There are too few cases in the UK (600 per year) so there is no research info for NICE to approve specific drugs. If you want this treatment then I would say your chances of getting it on the NHS are nil or less.  I think you would have to work with a private oncologist who is prepared to get it from the States.
Sorry not to have something more positive to contribute,
Patricia

http://sciencedaily.healthology.com//hy … iencedaily

I'm sorry I made a mistake. I was looking at something else as well and got the two confused.
Patricia

This video webcast discusses anticipatory grief and preparing for the death of a loved one. 

http://www.sciencedaily.com/releases/19 … 063543.htm

It wasn't very helpful to me but as they say there are different ways of coping so I am posting this because it may help other people.

Having been through this myself I believe that what my husband wanted was just for me to be there with him, to make him comfortable, talk to him, massage his feet which were very swollen, be calm. We had to stop doing things (looking for treatments cures etc) and just be there showing the love  we all felt for him. What he wanted was 'loving touch' (his words) - an affirmaiton of his importance to us all.
My thoughts are with you at this very difficult time.
Patricia

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(3 replies, posted in New Developments)

My husband had PDT at University College Hospital in London. The general view is that PDT is not a cure but a way of keeping the bile duct open by zapping cells in the duct. They are hoping to conduct a trial at UCH, perhaps you should ask your doctor if he can get you onto the trial.