Hi, just been told i'm likely to only have 12 months. I'm in a daze.

Hi  welcome to the forum, sorry that you need to be here.  I was told I was incurable almost two years ago. In the year before 5hat 2 brother in laws had been told the same and neither lived more than 12 weeks. I resolved to get my affairs in order ASAP.  I checked all life insurance policies the older one paid out straight away the newer one needs a letter to say I have less than 12 months which fortunately I can’t get yet.  I have moved everything I can out of my name into my wife’s name so she has less to do when I go. All bank accounts are now joint so she can access them all. I have written down my last wishes and details of what I would like for my funeral.  I am now making the best of every day safe in the knowledge that I have done everything I can to help my wife cope and let everyone know what I want.   I have also taken time to cry, scream and swear about why me and what did I do to deserve this.   
it is just so hard to get your head around.  I would also ask your consultant why 12 months if your cancer isn’t growing. 

sorry if that’s a lot to take in, feel free to ask all the questions you want on here as one of us will likely have faced the same or similar and have found a way to deal with it.  

Hi Doggymon71, I’m sorry to hear about your diagnosis and prognosis. I had a similar talk in August 2015 giving less than 12 months, mine was based on the fact that the treatment I was about to start lasted on average 9 months before it failed and at that time there wasn’t a different workable option for me on the NHS. I have a different cancer than you, I headed here to the forum and found anndanv had been on the same target therapy tablets for 2 years and that gave me some hope, she’s still here and so am I but we’ve both seen others who haven’t been as lucky. The drs don’t have a crystal ball but I suppose they do have statistics, I suppose they need to prepare us for the worst and hope for the best.

My prognosis had the affect that I did some practical stuff, wrote my will, did power of attorney, bought an electrically operated sit and rise chair, had some counselling. I became numb of emotion and needed to play music to tell me ehow I was feeling, my husband was also trying to be strong, and things became better after we had a long talk and cry. There might have been other stuff I should have done and I’m sure the good people here like Remoh can recall things they did if you need that help or Macmillan can also answer some questions on their helpline or probably have a booklet for it. Counselling, attending a cancer support group and posting and listening in the community here all helped normalise what I was going through.

I liked to find out as much as I could about treatments and luckily for me a new one came on the NHS 2 months before I needed it and that’s what kept me going still incurable but treatable, and actually better now than I was 6 years ago on diagnosis. I have low days like everyone and anxious times around scans, especially at the moment when I’m not stable, and treatment might need to be changed. Most here bounce back and carry on as it’s too depressing to be down all the time, and too hard to be upbeat all the time. We get to know when we will have challenges and get a coping mechanism ready for when those times are about to hit, sometimes that’s doing a post here as it can make us feel so much better getting those feelings out there, and getting the support of others who know what it’s like.

When I didn’t feel I had enough coping mechanisms I found my local cancer centre had courses to help. I hope you are able to identify what you need to know and can are able to take things a day at a time not giving up hope until things are very imminent.

I see that you have posted in ASK a Nurse so I hope they are some help to put things in context for you based on your cancer or point you in the direction of getting more info. I looked to see if you had done a profile, to see if it gave any further clue to any experience I had that may help you. If you want to do your profile sometime, it does help others, and I know mine helps me. You just click on your use name, press edit profile, write away and press save. 

Today must have been a bad day for you, on those types of days I try to think of 3 things I’m grateful for to try and remember something nice that’s happened or I’ve seen, something I’ve achieved, some act of kindness or person I’m grateful for, something like that, that can lift the day to seem not so bad before the day ends. There’s a thread of here that people dip into to do that called Three good things, I hope you find lots of things that help you.

thank you so much for your message. i've just come back from the hospital after having my tenth chemo. As its only 2 days since we were told, my husband cries at any little thing - he looks around the house and sees all the things that i have done to make it our home and he cries more. i on the other hand, know i have it easier (not being left alone after watching your soulmate pass) so i'm trying to be strong for the both of us and determined to prove them wrong.

i will get my soldiers all in a row and take each day as it comes.

X

Thank you for your feedback Richard, bank accounts,wills, funeral wishes all good advice. will get on them asap.

take care

X

Sorry you're here Doggymom71. I found that getting my affairs in order was a great comfort to me. Not least because cashing in my pensions and life insurance allowed my wife and I to both give up work, giving us lots of precious time together.

Much love to you,

Stuart x 

thanks Stuart x

exactly what I have done, downsized the bungalow to so now if by any chance I live a long time we are still financially stable and can spend everyday together  

Hello doggymom. There's lots of good advice here about getting your affairs in order and that side of things certainly brings much comfort when it's sorted out. I also have felt it helps me to clear out all the junk. We all have too much stuff and we only really need a small percentage of what we hoard. So I've found it very therapeutic to move carloads of 'stuff' to charity shops. It's also less work at the end of the day and I feel it'll be less to do when the time comes - eventually. My other advice once you've done the necessary is to put a few things in the diary that are nice positive things that will make good memories. I've been doing this recently and it might seem obvious but it's all too easy to just have a diary full of medical appointments. Having these shared treats has helped both of us to cope with my diagnosis together. Good luck and forget that figure of 12 months. It can just as easily turn into 24 or 36 or 48 or whatever.

thank you for your words of advice. have thought about clearing out the back bedroom of all my clothes and stuff that i've collected over the years that i thought id use eventually. lol.

x

Hello Doggymom71,

So sorry you find yourself here but you are most welcome. I've just read your profile and it makes it even harder to accept when you're still so young. My prognosis was given to me over the phone as my oncologist knows me quite well as I've been battling head & neck cancer for quite a few years in and out of remission. 51 when diagnosed, 57 when told it was incurable and had metastasized to my lung and chest.

It was still a blow and the first thing I did was sort out my wardrobe and my jewellery in a blind panic as I wasn't quite sure what I should be doing first, it made me smile when I read your profile and you did something similar!  I was in a world of my own to begin with but then you begin to calm down and accept it to a degree. 

Like the others have said we keep going, hoping to stay as well as we can for as as long as we can. I was told my sell by date was a 75% chance within 2 years and 5% chance I make it to 5 years. I've opted for the latter!

Being on here inspires me reading how positive everybody is although I'm not on here very much but like to catch up when I can. I've broken up for the summer holidays so now doubt I'll be popping more.

I hope your side effects stay minimal from the chemo and you keep up the fighting spirit!

All the best,

little-fi xx