I was diagnosed November2019. I have had surgery and am still having chemotherapy. I am feeling very alone despite good support from family. I am looking to connect with fellow sufferers, just to share experiences and feel less miserable.
Yes definitely is fun i was diagnosed Feb 2016 prostate gone to lymph nodes, spine, ribs, pelvis and a lung, been on palliative care since, just living with my uninvited guest.
Also looking after my disabled wife she needs 24 /7 care she has Alzheimers and parkinsons.
At last I've got this to work. Hi Billy. Sounds bloody awful. If you want someone else who's actually in treatment to talk to then please drop me a line. I'm awake most nights.
Hi jojo i actually try to sleep at night and sometimes in the day, my darling wife can't move without help so guess who moves her about. We've got ceiling hoists but she doesn't like them so as long as i can i support and move her about day and night.
So sleep can be a problem. We have carers in the morning i hold bren up while they wash there not allowed to lift her (safely rules).
I feel that my own problems pale into insignificance compared with yours. This must be dreadful especially in the current circumstances. I presume you are accessing all the help available but have you spoken to Macmillan about emotional support as well as practical help?
Haha macmillan is a laugh to us. When i was having cemo i was sick all the time so i phoned them up and explained how i was struggling to look after the wife. I was told to pay for a carer.
Other month someone suggested macmillan again i was told if i can look after my disabled wife i don't kneed help.
If it wasn't for a good neighbour i couldn't have a shower she comes round couple of times a week. If bren call for something and I'm in the shower i can't hear her +I'd be wet though.. Most times i have a strip wash in kitchen wile bren still asleep.
I've asked oncologist and Dr nothing is getting done
Starting to think we've slipped through the cracks somewhere.. No end of people have said with being on palliative care i should have a nurse, but haven't seen one yet.
No help at all apart from brens morning wash with me helping. I'm entitled to carers money but can't have it because I'm getting a pension.
Hope you're managing to keep going in these stressful times. Said to someone other day when they mentioned lock down I've been doing it about five years only time I'm out is weekly shop or hospital appointment.
Sorry I'm rambling on. Nice to talk to someone who understands.
Must confess, my own experiences of Macmillan have been a little inconsistent. My benefits got sorted which I am very grateful for but now it feels like I've been forgotten. I was told to submit evidence to email addresses which didn't work and haven't heard from them in months now. Cancer is ***, let's face it but very few people understand the broader picture. I am constantly astonished at the amount of work you have to do and the amount of people you have to contact at a time when you can barely get out of bed. Someone at the bank told me she was 'struggling to understand' my financial decisions made in the same week I had surgery and was ( happily) off my face on morphine!
i hate peoples'thoughts and prayers'. I just hope you're strong enough to get through this mate.
Well I've managed four years, my main worry is probably next year I'll need more chemo and the wife is nowhere near good enough to look after yourself if I'm bad again, i can't see a home looking after her 24/7 which is what she needs.
She can't feed herself, can't move her legs properly to walk. Not much warning to get Toilet we've got calling hoists but they take time to set up and move someone, where i just lift and move done. Which carers aren't allowed to do (safety rules) wheel have to see what happens when the time comes.
As you said it takes ages to get through to someone or or a program on Internet to send details to and then alot of waiting for something to happen.
Hi billy i am disabled now from having a brain tumour its ok as i can do a lot now i dont know if u are uk? but i live in a building with there our 24 hr carer as most people in chairs here i am not though. Its called www.sanctuary-supported-living.co.uk/ i hope you get some help
Hi billy i am disabled now from having a brain tumour its ok as i can do a lot now i dont know if u are uk? but i live in a building with there our 24 hr carer as most people in chairs here i am not though. Its called www.sanctuary-supported-living.co.uk/ i hope you get some help
Hi billy i am disabled now from having a brain tumour its ok as i can do a lot now i dont know if u are uk? but i live in a building with there our 24 hr carer as most people in chairs here i am not though. Its called www.sanctuary-supported-living.co.uk/ i hope you get some help
