End of life - end of life patients only

This subgroup is a dedicated place for members to discuss the particular impact of end of life. This is a group for end of life patients only.

“ tis the season”

Johnty
Posted by

Today I went into town and the Christmas decorations were already up and it made me think of everyone in our little corner of the forum and how we will be spending the festive season. I’ve always been a bit of a grinch but this year I somehow feel different and have decided to embrace it. I suspect for some of us it will be a time of joy and also contemplation but the excitement of children can be uplifting and infectious and so I intend to channel my inner child this year and enjoy what it brings. 

best wishes

jane

 “ A trouble shared is a trouble halved “
Wee blonde
Posted by

Jane

I hope 2 b celebrating xmas as I have every year with my little family (husband, daughter & f-i-l)) but this year I have a horrible feeling & can't quite get as enthusiastic. 

Due 2 c Onc during the 1st week of Dec. Do I continue with this chemo (running out of regimes), is there an alternative or do I stop treatment?

My black sense of humour frequently tells husband 2 make sure he gets a receipt 4 any of my prezzies...

Would like 2 hope I have more Christmases left in me but 2 b honest this year had bn rough & the alien boob...well wot more can I say

But let's go 4 this one as if its the last...spend spend spend, eat, drink & b merry 

Ho ho ho

WB xx

Wee blonde

Hard working,  bubbly, positive

Johnty
Posted by

Dear wee blonde, I know that stress levels increase in the run up to a review with the consultant but it’s good it’s early on in December so whatever the outcome you will have time to process what happens and prepare to spend Christmas with your family. I’ve bought myself a Christmas jumper for the first time to wear on my weekly visit to the hospice, we’re making decorations to sell to raise funds so I can’t avoid getting into the spirit of things ! They will never guess I am really the worlds biggest grinch ! I might even treat myself to a sweet sherry as a special treat !

best wishes

jane

 “ A trouble shared is a trouble halved “
flowerlady
Posted by

It's a strange time isn't it? Hard to know what to do, feel, who to see. I remember wanting another Christmas. It's an emotional time anyway, without illness or disease. I have made my pickled onions, which I didn't do last year.

How does everyone else feel about Christmas? 

Xx

Flowerlady x
Johnty
Posted by

Dear flowerlady, I agree it is a season of mixed emotions, however it’s good to prioritise how you will spend your time and focus on the people who have supported you in your times of need. I have no children or extended family so will spend it’s quietly with my beloved husband who has been my rock throughout my illness. I enjoy looking at the Christmas lights and I’m quite partial to a mince pie !

best wishes

jane

 “ A trouble shared is a trouble halved “
Maz59
Posted by

I have unfortunately been too ill recently to get out and get on with things and that has led me to thinking about what I can get on with whilst in doors. This of course due to the time of year has led to Christmas preparations. 

Usually I would not do anything Christmassy until 1st December that goes back to when I worked in schools and our head for 15 years insisted on no decorations or rehearsals etc till then. 

I decided to do cards last week and for the first time ever I had a funny feeling and I found myself saying to my husband that if anything happened still to send the cards as they have both our names on. 

I don't really think my demise is that imminent but I think that my current illness which is lingering after my RT and the uncertainty of what actually is left to try mixed up with the anger that the plug has been pulled on my funding for the only drug that worked is making me feel very vulnerable. 

Luckily my grand children will be keeping me on my toes, I have frozen 2 to look forward to this weekend with my daughter and granddaughter. I will have to plan something for my grandson for another weekend. 

I do love Christmas this will be the first Christmas my husband has had to work but he will be home at night. I have decided to stay home though and not travel to my daughter's as I would miss my husband. However my children must have been talking as my son and his wife, who always stay home alone for Christmas, have asked.if I would like them to come to me. So it will be quieter than usual but still very nice. 

Maz 59 

Johnty
Posted by

Dear maz, I hope you have a lovely time going to see frozen 2, it will be an exercise in escapism. I know what you mean about feeling vulnerable especially around treatment options, it can be hard to balance times like Christmas with the daily pressures of ill health, but if there is joy to be had I try to take it even though it doesn’t change my situation overall. I might even try to cook the Christmas dinner, which will come as bad news to my husband !!!

best wishes

jane

 “ A trouble shared is a trouble halved “
daloni
Posted by

Hi

My family is big on Christmas and on doing it together. This year we will be with my nieces who have both bought houses in Norwich during the last 12 months. They live a few minutes drive from each other. There will be 11 of us - my sister and brother in law; my nieces and their spouses; my other sister and new boyfriend; my girls and me. 

Our plans include a mass stocking opening opening on Christmas morning then breakfast before one niece goes off to her job as a community nurse. We will have a late dinner to accommodate her. There will be lots of games, singing, trips to the coast to see the seals, dog walks for Noodle and plenty of eating.

I am realty hoping Operation Have A Great Christmas will come to fruition. It’s my last immunotherapy infusion today, scan next week, meeting to discuss the scan the following week and then some time off. I’m going to insist on it. 

This could be the last Christmas without tiny ones. One niece is hoping to start a family so maybe next year I shall be a great aunt. I do so hope I’m around to see it. 

xxx

Johnty
Posted by

Dear daloni, it’s wonderful to hear you will be spending Christmas surrounded by the love of your family after a year of ups and downs, make sure you don’t leave any chocolates wrapped up under the Christmas tree or that puppy of yours will be opening his presents early and you don’t want  a unexpected trip to the vets ! ! !

best wishes

jane

 “ A trouble shared is a trouble halved “
Johnty
Posted by

Well Christmas has definitely arrived at the hospice crafting class, we’re making things to sell at the Christmas fair so there is no avoiding it this year for me !!! I’m trying hard to keep my inner grinch inside by disguising myself in a Christmas jumper. It’s good for me though as I would probably have given the whole thing a miss this year. I think what it’s taught me is being in a group of loving people can encourage you to get in the the spirit of things even though you are having a tough time.

best wishes

jane

 “ A trouble shared is a trouble halved “
Johnty
Posted by

Well the Christmas decorations are up !! There’s something about Christmas tree lights I really love, I think it triggers childhood memories of a time when my life was less complicated. Hubby is going to cook Christmas dinner this year for the first time in 36 years of marriage! I’m determined to get into the spirit of things this year despite normally being the worlds biggest grinch. I want to make it a happy memory for my husband.

best wishes

jane

 “ A trouble shared is a trouble halved “
Maz59
Posted by

Well done you.

I have not got decorations out yet but my cards are all done and I at least have something in the way of a present for people. 

My husband has to work Christmas Day and Boxing Day this year but my son and daughter in law are coming on Christmas Eve to stay. My son loves cooking, and eating, so he will no doubt take on the chef role which is fine as his wife is a vegetarian and he has some great recipes. He is very much a carnivore so we will have a good mix. 

It will be strange not having the grand children this year as we have spent most Christmas days since their arrival with them either here or at my daughter's but I didn't want to go without my husband and I feel they need family time without us. We are going there on the 27th though. 

Since being described as terminal or pallative or whatever else they want to call us there is always that thought of "will this be the last one" which usually I dismiss very quickly. This year however I have a feeling that if I don't manage to win the battle with the NHS to resume funding for my meds the end is probably near. 

From what the oncologist said last week it would certainly appear there is the evidence that the meds were working but unfortunately this is not necessarily enough with the NHS in the state it is. 

Maz 59 

Johnty
Posted by

Dear maz, it’s good to hear your medication is keeping you stable, I understand what you mean about the terminology, I think the lines have become very blurred.

i think Christmas has taken on a special meaning for me this year as it will almost certainly be my last and I want to leave my husband with happy memories. I try to live in the moment as much as I can, concentrating on my quality of life.

For my type of cancer there are many drugs available in the USA that given the way things are administered by NICE will only be available here in the uk after several years, so I sympathise with your frustration over funding. Before google we wouldn’t have known these things, I don’t know if that’s a good or bad thing !

im sure you will have a lovely Christmas meal even though it’s on Christmas Eve, it’s the fact you are all together that counts. Will the veggie be having a nut roast instead of turkey ? I have got some individual turkey joints with stuffing inside wrapped in bacon as there will only be me and hubby for dinner, as I have no children or siblings or living parents, but we will have a nice time being together, and will watch the queens speech while we eat.i would love to be a fly on the wall at their Christmas dinner after the year the royal family have had ! !

best wishes

jane

 “ A trouble shared is a trouble halved “
anndanv
Posted by

Hi Everyone, I normally try to avoid posting in this particular group but a lot of the time, like now, this discussion could easily be discussed in the Incurables group, so here goes! I noticed there are lots of people saying about it 'probably' being their last Christmas! Well, I've been there and what a disaster it turned out to be, so I would just like to share a bit of it, so it doesn't happen to someone else! We too have a family time like Daloni described, starting with breakfast, board games etc etc. I was so determined that day was going to be the best ever so that the whole family had a terrific time and it would be an everlasting happy memory! However, I was so uptight (just not like me at all) I made lots of silly mistakes, too many to go into, but burning the soup, for the first time in my life and forgetting to put out two or three things which were perfectly cooked were the main ones! I insisted I wanted to do it all myself although I had many offers of help but I'd always been chief cook, so why should that year be any different??? I was so tired by about 7pm, I was in tears and so sore and tired, I had to go to bed!

Thank heavens that was not my last Christmas, but I had been told I'd be lucky to still be here on 1st Jan 2014! Yes 2014! So no one REALLY knows what the future holds. We've had some memorable Christmas Days & meals etc since then I'm so happy to say. I cook the turkey ( with my husbands help) and other duties are split, it works a treat! My husband is working night shift at the Out of Hours service in our local hospital on 25th & 26th but doesn't start until 11pm, so will have the best of the day!

I couldn't believe how "I" ruined that Day for myself and made everyone else worry about me, so please try to think of it as just another Christmas Day because when it comes to it no one really knows for sure!  (I'll come off my soap box now! LOL!!

Love Annette x

Johnty
Posted by

Dear Annette, I think in general you probably have the right mental approach, in my case however I don’t dwell excessively on timescales but on the other hand my cancer is extremely aggressive so I have to be realistic and not take anything for granted. I’ve known since diagnosis that i could not be cured and my prognosis was not good, so I have been quite determined not to waste any time I have left with my husband. I am very fortunate that I don’t suffer from any form of depression or anxiety and am at peace with everything. 
im so glad your still here in 2019 and hope you have many more happy times to come. I think each individual kind of cancer has such variable outcomes that we can’t compare ourselves to each other in any meaningful way anymore, my cancer only effects one person in one million of the population, so I’m on a little island of my own when it comes to reliable information or comparisons. I’m a lucky lady to have a husband who is totally dedicated to me and that’s all anyone could ask for, wether it’s my last Christmas or not I’m going to enjoy it and not fret about it.

best wishes

jane

 “ A trouble shared is a trouble halved “