"The disease is stable"

It certainly sounds like positive news. My wife (stage 4 BC) and I agreed to stop using the terms good and bad news - we now refer to positive news or setbacks. I totally understand your situation - you go into these meetings with utter dread and just pray for anything positive to cling on to but the reality is that life is not going to be what it was before, even if the news is relatively upbeat. There is still the endless medication, the fatigue, the worry, the fear and the sense of loss for the life you had before. I am also on sick leave to care for my wife and to be honest I have set myself a goal of getting back to work if we reach a stable position with her disease and treatment. This is not because I am desperate to get back to work, or can't continue with my caring role, it just seems like a goal that would symbolise a positive situation and something to aim for. This horrific disease changes our perspective so much that we find ourselves accepting situations that were previously unthinkable, doesn't it? I suppose it is the whole fear, anger, denial....... sequence. We are very much in the bargaining and acceptance phase in our journey and just looking for a good response to the current medication regime to allow us to move on to our next "new normal".

Take care

ATC

HI MamaT

I hear you! I get where you are coming from here.

My husband was diagnosed with a grade 4 brain tumour in Sept 2020. His diagnosis was terminal from the start. It was a huge amount to initially get our head round.  He was given 12-15months. 

Those 15 months "expired" in November and he's still here, still physically fit. (He's a marathon runner) Mentally he has deteriorated gradually over time and is now like someone with early stage dementia. We spoke to the oncologist at the start of this week - everything's stable, no change, see you in 3 months. Great news but it leaves the kids and I in limbo. I know how selfish that must sound but we have no idea what could happen next here. We know what the end result will be but no one is telling is what to expect and that not knowing is harder to live with than knowing the facts. So I'm a bit lost too.

My sanctuary is the living room and after almost 2 years of working from home ( i was working in the living room for 5 months before his diagnosis) I am sick of the sight of it! I do have my cats for company but I sometimes think they are getting fed up with everyone being home all the time!

I appreciate I'm lucky in that I can work from home as working helps me maintain some sense of normality here. I also kept my hobbies going, albeit at a slower pace. I take time to go for a walk after work and at lunchtime. I do yoga in the morning before anyone else is up. That wee hour of peace and quiet is heavenly! I also journal a lot too. It helps to get everything out of the system. Maybe you should have a think about gradually picking up your own hobbies again, even if its just for a few minutes a day.

This group has been a great support to me. There's always someone around here who gets it. It’s always good to talk so remember you can also 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.

For now, I'm sending you a huge virtual hug. You're doing so much better here than you give yourself credit for. Stay strong. Stay positive.

love n hugs

Wee me xx