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Disappionted


LindaH
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Hi,


I went to speak with my Oncologist last night and was disappointed as there hadn't been any reduction to the tumour. Okay, it's stayed the same and I know that is a result....as it hasn't flared-up again or become larger, but I guess I wanted a miracle that just isn't going to happen.


He is pleased with the way things are going and he is going to write to {name removed - moderator} again for me to ask if there are any trials or any new medicines, so I know he is going to take care of me, it's just that I feel like I'm staring into the big black hole and waiting to fall in, but I don't know when it will happen.


I know really in my heart of hearts, compared with others who are going through this flippin' disease, I guess I am lucky. When I think of Sarah's mum and the pain that lady has been in......I'm not in pain and I am able to go about my normal duties. I just feel in limbo not knowing where to turn next.


I asked My Oncol if I was still inoperable (I ask every time)and he keeps telling me surgery wouldn't be of any use to me because of the spread....Oh by the way....my liver mets had increased slightly, but the radiologist feels that it is dead tissue.


I'm just so frightened of dying. I'm scared that I may only have maybe another year to live as I recall someone telling me on the Macmillan website (I went there before I found this truly wonderful website) that I should pull myself together as her husband lived another two years after first being diagnosed. I can remember replying saying I wanted to live forever not just another two years, she never wrote back....perhaps I sounded nasty, but I was so shocked and I was thinking at the time, how on earth can someone be so pleased that her husband lasted two years....I am now hoping and praying I do at least live another year.....I want more, much more, but I try not to think too far ahead.


It's so funny the things you think about when death is staring you in the face. December 4th I was given the news. The doctor sat my hubby Steve and I down and gave me until Christmas. I recall thinking (and I nearly said it to him) "I'll miss the end of Strictly, I won't know who has won".....Now even though I'm looking forward to Christmas and the final of Strictly and I try my very, very best not to get down about this awful thing, but it's always in the back of my mind. I keep a diary - I always have since my daughter was born - so I've bought one for next year and I'm hoping (again) and praying that I will be able to write in the diary to the end of December.


Anyway, enough from me rambling on. I will be having another CT scan in November so let's see what that will bring and I've got to keep my fighting spirit up at all costs.


Thanks for listening.


Linda x

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I'm really sorry to hear the news was not what you had hoped for Linda, though it does seem stable. It is also great that you are able to do all the normal things that make up our daily life. I coincidentally enough spoke to my insurance people about morgage protection today and asked when they could be approached for a payout and they quite rightly said that no one really knows how long we have got. He said diplomatically that I am not ill enough yet to go down this road and he would rather not speak to me on this subject for a long time yet! We just need to keep fighting and pushing it back at every opportunity. I am sure your diary will be full of good things, right up to the last page.


Look after yourself


Steve

X

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Hi Linda


I am sure you will still be writing in your diary.


I know how disappointed you must feel, when you so hope that there will be a reduction (I think there was before wasn't there?) - to be told there isn't is a blow (although we were also told that they don't record a reduction unless it's reduced by a certain % to take account of a margin of error so there might still have been - just not a big one?).


When our first scan didn't show a reduction I got in touch with the nurses on this site who were very nice and pointed out that a stabilisation is actually a very positive result indeed, and, looking at how you are feeling generally, shows that the treatment has been successful. I'm not sure if that makes you feel any better but it did help reduce our disappointment. And the fact your oncologist is also pleased with you is a very positive sign.


As I said, I completely understand and empathise with you feeling disappointed so I'm not sure that any of this helps but there is good reason to view it as a positive result as well and prepare yourself for a lot more Brucie.


xx

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Hi Linda,

It must be so difficult. I am sure it is little consolation to you but I feel envious of you when I hear you are going about your normal duties as my husband has spent most of his time in hospital since his surgery at the end of May, and hasn't had a day without pain. I don't know how you enjoy yourself with a constant cloud hanging over you but I hope you can have some lovely days with you family, and take some comfort from the fact the tumour hasn't grown,

Very best wishes,

Nikki

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  • 2 weeks later...
Carole McGregor

Linda


Like many others, I turn to this forum for support and information for someone else - in my case, my husband Clive who is the same age as you and was diagnosed around the same time. I absolutely understand why many pancreatic cancer sufferers find it too difficult to do this themselves. Thats what makes people like you and Steve so remarkable. I read your posts and wonder at the strength of character and generosity of spirit that enables you to share your very deepest thoughts with a bunch of total strangers, offer support and advice to others in the midst of your own personal crisis and have the courage to put into words what the rest of us dare not say. If goodness has anything to do with it, you will be around for quite a while yet !


Keep being you


Love

Carole

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