Chemo or no?

[willislulu]

Hi all.

I had an unsuccessful whipples last December and have since tried chemo. Having been very poorly and admitted afterwards I am now wondering if I should try more chemo. I am a very positive person but want quality of life. I am only 45 with a loving husband and amazing teenagers and am saddened to be leaving them so soon. My family will not understand if I do not take further treatment but I want my time to be happy and as well as possible. Your thoughts??

[DRAD3]

Oh my goodness, I am so sorry to hear of your diagnosis. I am your age and lost my husband to PC last year (he was 46), we have a teenage daughter. I cannot imagine how you must be feeling, trying to decide what to do next. Before my husband's diagnosis, I had always imagined that it would be a clear-cut decision - chemo. My husband did not hesitate to go for that and he had 12 months of chemo/radiotherapy. Initially he did very well but as time went on the treatment took its toll and he became more and more unwell and had a couple of hospital stays. At this point he did become very depressed but he was eager to try new treatments and keep up the chemo regime - he saw refusing chemo as giving up. It was at this point where I began to question the value of continuing treatment as he had no quality of life but when I voiced this, he was upset, he thought I had given up on him. I could not explain that I had not given up, I had just accepted the inevitable and had wanted our last months together to be spent living and loving, rather and looking out of hospital windows waiting for the inevitable. The hospital refused treatment in the end, it was doing more harm than good and, again, I think he felt let down, abandoned - he never, ever gave up hope and was in this frame of mind until the end. I have nothing but admiration for him because I know this attitude gave him many more months than anyone expected but it also meant that we never really talked about things that needed to be said because he was in denial really. I don't know whether any of this is helpful but I really just wanted to express my understanding of how terribly difficult it is - for you as the sufferer, the one who has this awful decision to make, the one who has to live with the consequences of that decision but also for your family who may or may not agree with your decision. All you can do, as a family, is talk it through, listen to one another and try and understand and be accepting of everyone's viewpoints. I do hope you are able to get some support perhaps from your oncologist, nurse, etc - perhaps frank discussions with them will help? Not something to rush, that is for sure. Perhaps there are other treatment options they can suggest.

I do hope I have not caused more confusion. Wishing you well and sending love and strength.

Deb

x

[willislulu]

Deb

Thank you so much for your reply and I am so sorry you lost your husband so young too. Since posting I have had yet another bad reaction to chemo so the decision may be made for me. I continue to be positive, I know no other way, especially as time is limited. Moping around seems a waste. My only worry is for my hubby and boys . I cannot bear the pain they will have to go through. We talk openly as much as we can , especially my husband and I. The boys know things are bad but not the timescales, which they estimate to be a few months. How have you managed since you lost your hubby?

Thank you for responding

Xx

[DRAD3]

Hi

So sorry to hear that the chemo has caused harm again and that your options are limited. It is so unfair and my heart goes out to you.

It is wonderful that you and your husband are able to talk about things openly. You will see on my other post how practical my husband was and we talked for many, many hours about how we would get on without him and he did everything he could to make sure we would be OK financially and that there were no DIY jobs that were left undone - I had many a lesson on electrics, plumbing - not sure I remember a single thing and when things do go wrong, I still want to just call out his name and feel so angry that he is not around. To be honest, though, although inconvenient, the practical things really are the easy bits - I can muddle through or call a plumber or an electrician, what I miss most is just his presence, chewing over the day with him, talking through decisions that need to be made, planning for the future, his hug when I'm fed up, his funny stories - we never talked about how I would cope without these things! I guess that's because he could do nothing about that - he knew I would just have to cope - he did tell me he wanted me to move on, find someone else - I could not entertain the thought of that at the time and still can't but I guess he just wanted to know that he could sort that too! Your husband and boys will be devastated at losing you - it is something they will never get over fully, but they will learn to live with it and I am guessing they will do you proud, by being incredibly strong, just as you are being now. My daughter talks more about her Dad these days (a year on) than when we first lost him. Inspired by him, she gets on with things, is growing stronger, day by day and talks about him like he is with us still. She is comforted and strengthened by his memory and the knowledge that she is like him in many ways - he lives on, in her, in our memory, in our dreams. Her only fear now is losing me and she is quite anxious when she does not know where I am but that is easing too - your boys may experience that and will just need lots of reassurance.

I hope that knowing that me and my daughter are OK will reassure you that your husband and boys will be too. I admire you immensely for your positive attitude and your ability to think of others at this time. I do hope that using this forum is helpful and that we can support you. Sending you lots of love.

Deb

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[PCUK Nurse Dianne]

Hi Willislulu,

I am sorry we missed your thread last week, we often find that they move down through the forum quite quickly. I am sorry to hear of your diagnosis and the difficulties you are having at present. I would like to offer our support to you, and would like to email you independantly of the forum if that is ok.

It is great that you have been able to be supported by the members of the forum, where you will receive a lot of support.

Kind regards,

Dianne