Other experiences of late stage glioblastoma

[Endstage]

My husband of thirty years who is a little older than me and in his mid 60s has glioblastoma. He began hospice and palliative care at home in mid-October and they didn’t think he would make Christmas. He has done really well but I am exhausted. The cancer is definitely taking hold of him now. He sleeps more and shows symptoms much of the time of dementia. But for me the worst thing about this is that he seems to be going into some kind of decline, and then just when I’m getting used to that, he pulls back up again. For example, for the last 2 1/2 weeks he has been in bed from 9 pm to 3 pm most days. And then today suddenly he wants to get up and shower at 9 am. I have found the stop start nature of this grief to be the most difficult thing. I wonder if anyone has been through this and how you have coped. I also wonder if anyone else has had experience of these up and down weeks. He has need it 247 care for months now - just that he’s not very steady on his feet and it’s not really safe to leave him alone. Thank you.

[Hast233]

Good Morning, this feels especially relevant forbl me at the moment. My father was diagnosed in October, was operated on in November, and recieved radiotherapynin January. He is 78 and really declined around the point he had radiotherapy - he also had COVID at the same time. Since then he has gradually declined and now is in a hospital bed at home with 24-hour care and pallative 3-times a day. The very nature of the illness is that you seem to get a noticeable drop, then a rally for perhaps a week, then a drop again. My dad had a bad fall which took away the confidence in his legs so is now bed bound unless I am around to help him into a wheelchair. Cognitively he is still all there and the docs are amazed but his body around him is failing. He gets up for a few hours a day but does struggle with instructions (will swallow instead of spit when having his teeth cleaned!). In terms of how to cope with the grief - my mum has found it very very difficult. We know at his age there is very little hope but use CBD and Prozac on him which does seem to have helped. She now, with the support of our lovely carer Anna, has had the pressure of doing everything taken off her and can enjoy the time with him. A case of embracing the good days and accepting the bad days is important - I try to see every good day as a bonus. But it is hard and with every lift or good day comes hope - I think I am too rational for my own good though so try to keep grounded and just enjoy the time with him. Best, James

[LB249 in reply to Hast233]

Hi James I know you posted a whole back but I’ve just joined this website. Sorry to hear you’re in such a difficult and painful situation with your dad. Please can I ask about Anna - your nurse. Does she work for the nhs or have you used a private company.

Thanks in advance

Julie

[LB249 in reply to LB249]

While back

[LB249]

I’m so sorry to hear about what you are going through - I hope things don’t get too hard - such a difficult, emotional and awful time for you. Keep strong - it’s good to hear you’re getting lots of support

[Hast23388]

Hi Julia,Given the nature of Glioblastoma if you give your GP a good nudge they will arrange palliative care to assist for several times a day which is not means tested and of no cost to you or your family. On top of this we have Anna who I found through Elder. I tried all the local care options and I wasn’t particularly impressed with anyone they sent through. The cost is not subsidised by the NHS but MacMillan have a department dedicated to helping make sure you get any funding you are eligible for but this is means tested. It is about £1000 a week with Elder but our experience with them could not be better. Small things like sending my dad a cake and little gestures are really lovely given the situation.

Best,

James

[LB249]

Thank you James - we’ve had district nurses round to assess my dad but that was a couple of weeks ago and things have changed. We don’t like the idea of having different people round and would rather have one who we can all get used to. I will have a look into Elder - although not sure if they cover Essex. We don’t necessarily need anyone now but want to make plans. Thanks again

Julie