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Life-limiting illness

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How do you cope with the uncertainty?

4 replies

teddyneedsawash · 24/03/2019 08:29

DH had a brain tumour diagnosed and removed 5 years ago. All good. A routine check last year showed that it had grown back. He had an intensive course of radiotherapy which started off OK and got increasingly exhausting. He's now just started PCV chemo. It's horrible ; he's barely been out of bed for 8 days, he's exhausted, he's not eating but I know it's for the greater good.

However, this is not going to get rid of the tumour. When I asked, the surgeon gave a very non - committal (I know, all brains are different) 7-20 years. And obviously, until treatment is finished we'll have no idea how well it's gone. The thought that we might have to go through this again, the uncertainty... I'm finding it so hard at the moment. We have young kids; I'm trying so hard to keep it normal for them but there's no escaping that their dad has been in bed for over a week. I'm just going to have to try and forget the uncertainty, aren't I?

OP posts:
teddyneedsawash · 25/03/2019 06:42

And he went back in to hospital for the 2nd time this weekend last night for various checks because he has chest pain. And back pain.

OP posts:
eagleray · 25/03/2019 18:17

I'm so sorry this is happening to you all. I know about PCV because a friend had it at roughly the same time I had chemo (she had a brain tumour while I had breast cancer). My own chemo was bad enough but I know it was fairly lightweight compared to the side effects of PCV, and I recall our bloods being depleted in different ways.

How is he getting on in hospital? During treatment, I was the one being admitted for days at a time at v short notice while DP was left with the kids (aged 1 and 4 at the time). I actually don't know how we got through it, but I guess you middle through.

Is he having any other treatment such as radiotherapy? Wishing you all the very best and hope he's out of hospital soon Thanks

teddyneedsawash · 25/03/2019 21:42

Thanks eagleray. He's home, with a diagnosis of some musculoskeletal thing I can't remember the name of and a bunch of codeine. Which is considerably better than diagnosis of massive infection or heart attack!

He's had 6 weeks of radiotherapy; I thought that was bad but it wasn't a patch on this.

He's taken his last tablet today and gets a 4 week break before round 2. I'm trying not to get my hopes up that he'll feel considerably better soon.

OP posts:
eagleray · 26/03/2019 09:33

I've sent you a PM x

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