My son

Hi netty43 again. 

My husband also had a sarcoma,  although a different one and very aggressive. He gad radiotherapy, surgery, they thought they had got it all only to find that it had spread to multiple organs a few months later. 2 rounds of chemo failed, sarcomas can be incredibly difficult to treat.

Do you have other family around? Have you got a link with a hospice yet? I know from reading here, that they are a mixed bag, but ours were very good at that point, in the last few weeks/ months.

If hes having difficulty with lying down, gas he got a hosputal bed with air mattress? That might help and district nurse can arrange that. 

If you have any community around you, friends, his friends, neighbours, family, ask for help. None of us like to, but even little things like getting in my shopping really helped ( i dont drive). Call upon anyone and everyone. Sometimes you have to nag a bit of medical services if they dont act. 

Of course Macmillan are also here if you need someone to take to.

Huge hug coming your way. 

Thank you for replying. I do have family but very few friends I've never been a social butterfly and now I seem to crave anybody not even to talk just to sit with, someone who isn't trying to analyse my face, who keeps asking if everything is ok because it's far from it.

We are under hospice and my sons hospice nurse is lovely and so are the nurses, all trying their best to help but sarcoma as you said is very aggressive so we sort one thing and something else crops up

I can completely relate, I'm quite shy and a bit of an introvert so I'm also not a social butterfly and I'm finding that hard now  I'm on my own.

I found it hard to ask for help for myself, thankfully the hospice social worker was lovely. 

The rollercoaster is tough. One day, you think things are a bit better today, then the next day, something else happens. We got to the point when there were new meds every couple of days, basically they didn't know what might work.

Just keep talking. X

Yea we are at that stage atm...a med or dose will work for a day or two then the pain increases more and we are back to square one. 

Rails and stairlifts are being fitted but its all too late he cant use them.

I feel the need to talk but have no clue wot to say im so completely broken and scared and lost i dint know if im doing or saying the right thing 

Oh  (((Netty))) I'm so very sorry. There's nothing I can say that will help but I just wanted you to know that people here really do care. I know something of what you're going through. My daughter is one year past eighteen months of treatment for a rare and aggressive cancer. She's doing well but next month are the regular scans - always a worrying time.

I'm glad the hospice are there for you with their lovely staff. One day at a time. I'll keep you both in my prayers. xxxx