“ tis the season”

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. 

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 ! !

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!!

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.

Hi Jane some confusion over my last post I think. I am currently not on any medication as confusion reigns and my oncologist has not managed to sort it out yet. The chemo nurses have it on their records I am on 2 drugs and keep ringing to see why I have not picked them up but I am not on those drugs and they have never been even mentioned to me. It is now over 5 months since I came off meds.  

Unfortunately the last scan showed the cancer which was under control is now growing. The only drug that stopped it in the past I am being refused but my oncologist is supposed to be requesting it again. I should hopefully get some news next Thursday 5th Dec. But as he obviously had not sorted out the meds mix up with the chemo unit I am concerned the funding letter might not have been done either. 

In August I was told I would probably have 9- 12 months if I was not on meds. He said he has factored in it is me as normally they would say 3 months. Now I am not sure when he expects that clock to start ticking. However like others I have seen timescales come and go and I think if we can get the right meds back and the liver Mets under control I will last a good while yet. Now that would be a lovely Christmas present. 

My son and wife are staying Christmas Eve till boxing day so we will be having lunch on the day. I am happy with good company and good food  and hopefully they will indulge the only thing that makes the day for me and accompany me to church on the morning. 

Dear maz, I hope you get good news on the 5th December, the delay must be very frustrating for you. I only take one pill a day now which cost £500 each ! ! !  Blood cancer drugs are very expensive and nice are very strict with who gets them and when they get them. It’s good to hear you are having family staying at Christmas, I hope you get to go to Christmas mass and celebrate the true meaning of Christmas. Hopefully it won’t be raining and I will be able to go out for my traditional Christmas Day walk before a nice dinner in the afternoon cooked by my hubby.

Mine are not that expensive and I only have one a day for 21 days then a break for 7, but they are not cheap. I can not afford them myself so all I can do is wait and see what happens but I had people chasing me again this week from the hospital re picking up meds and asking me to chase my oncologist. One of his secretaries is off so I know they are pushed but it is difficult trying to keep everyone happy when I am the one suffering in the long run. 

Take care and best wishes

You are an inspiration to me. I read your profile....which I have found is better to do (for me) after a chat or two. I just wanted you to know.

That was supposed to read " dear Johnty".

Morning Johnty

I don't do Christmas jumpers as they make me look enormous, I still think I look a size 10 even though I look like a moon faced Kurt Russell. I just wondered how many Christmas trees you thought were too many. I'm going for three this year (big house), but I may get a little one for the front hall......what do you think? !