It’s the not knowing.

HI 

welcome to the online community. Oh I hear you on this one!

My husband ( now 52) was diagnosed with a grade 5 brain tumour in Sept 2020 and given 12-15 months. Then we were told it would be less than that due to complications caused by post-surgical blood clots in his lungs. They screwed up the last scan so we've not had a proper update since July. It feels like living in a cross between No Man's Land and limbo.  He doesn't want to know. Like your husband, he's really positive and talking about things he's going to do in April 2022 etc. 

Not knowing and not having a clear expectation or even a proper update is driving me crazy while breaking my heart. It's hard on our kids too (21 and 24). My daughter is struggling with anxiety as she fears since we reached the "expiry date" (sorry horrible term but I don't know how else to describe it) that each day could be the last. She's right. it could be but we have to just assume its all going to be ok  until its not ok.

I take each day as it comes. I'm still working full time and that's actually a great distraction from this. If I'm focused on work then I'm not stressing about life. I also make sure I take some time in the day for myself, even a few minutes to walk round the block or to sit with a book. I try to only worry about what I know and not worry about "unknowns" if that makes sense. It's not easy and some days are easier than others. On the bad days I break the day down into pieces and tackle it one task at a time or an hour at time. 

Having a close circle of friends to talk to and this community has also been a huge support. It’s always good to talk so remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Hope this has been of some help. 

it's not easy but trust me, you're coping so much better than you think you are. Sending you a huge virtual hug. Stay strong.

love n hugs

Wee me xx

My husband has secondary cancer of unknown primary in the peritoneal. It is a rare type of cancer & is incurable. He went through chemo which was horrible for him. He then had some time feeling 'normal' before he ended up having surgery for a blockage in his small intestine. Again he had some time feeling 'normal' after recovering from surgery but has deteriorated again. 

In October we were told it's likely he only has months to live & we should get out affairs in order. 

I find it hard, the roller coaster of emotions and the not knowing. He has the hospice nurse for palliative care who calls once a week to check in on him. For the last few weeks he has been going to bed around 8pm on most evenings. This last week he has been falling asleep just sitting on the sofa and says he feels like his body is shutting down & he can't fight going to sleep. I know this isn't a good sign 

As much as we have friends & family I feel very lonely at times.  My husband is also staying positive & he is still working when he can. I feel like we still have a lot of loose ends to tie up with personal matters but I am working all day & looking after the kids so we never get the chance to discuss things. His mum passed away at the end of September so he is trying to sort her estate too. (On a side note her funeral was after the oncologist told us his prognosis which made the funeral so much harder). 

I don't know the answer to your question 'how to people cope'. I just wanted to let you know you aren't alone. I feel that when there is a plateau in my husbands health then I know what each day will be like so I am prepared and can get through it. At times like now when he seems to be dipping & I don't know if it is a temporary dip or not I find it harder to cope. Work & the kids make me focus on something other than how he is or worrying. 

I go to Maggies regularly to talk to someone who is outwith the family & detached from the situation. 

Take care

x

Thank you for your response - this is the first time I have used an online facility as I felt I was coping with support with friends and family and a full time job. I hear everyone’s personal circumstances and it breaks my heart and I admire and respect each and everyone one who is coping with their situation. Sometimes it does feel lonely as you try and keep it together for everyone and then something happens and it’s easy to implode. Like you I don’t know how long and what the next 12 months hold and I feel like I am grieving for what we are going to lose together and I get so angry……it’s not fair. We are meeting for the results of the latest scan on 23rd Dec so we will know more then - fingers crossed but we may get some peace from knowing either way.

Sending you positive vibes for the 23rd and a huge virtual hug

Wee Me xx