Hi all , I have to say this is something I never thought I’d be doing but I’m struggling to cope with my husband who’s now terminal, this began in 2014 when he was 42 he was diagnosed with stage 4 bowel cancer and that was immediately followed by chemo ,radio therapy and then surgery as the tumour had shrunk by almost 50% making it operable, he had a temporary colostomy which was reversed once the remaining bowel had healed . He did start to complain about lower back pain within weeks of surgery but we were told it was simply scar tissue but the pain got worse and worse over a period of 2 years until eventually he was sent for a pet scan which revealed another tumour on his coccyx so we were sent to st marks in harrow and at that appointment we were given the news that they would be taking the coccyx,bowel,bladder,prostate and that they would remove his bum cheeks to fill the void , it was devastating news and they said if he didn’t have the surgery he would not see the end of the year ( this was back in February 2020) so surgery was arranged for March 20 but then covid hit and he didn’t get surgery until the end of August 2020 , it’s was an 18 hour surgery and they kept him sedated for a further 4 days when the surgeon called me he said the cancer had spread to the sciatic nerve so they’d had to sever it rendering his left leg and foot useless and because they’d taken more lymph nodes he now has lymphoedema, all of this we’ve coped with including wheelchairs frames hospital beds and carers etc but he’s just been diagnosed with cancer in the pelvic lymph node which is now non operable ( if you’re still reading this and not tuned out then thank you) so overnight I became a carer a job I thought I’d be ok with but it’s becoming clearer that I’m simply not coping , I get so angry at him as we don’t go anywhere or do anything , there’s no laughter or fun in our lives . I’m trying to look after him , run a business, deal with staff and customers , cook , clean , this isn’t a pity party and I’m certainly not after brownie points or phishing for compliments but I just want a day without something happening a normal day that’s all just a normal day , I hate being at home with him but I’m exhausted emotionally and physically, yesterday just about tipped me over the edge as his colostomy bag exploded . We both know he not got long and I’m desperate to make whatever time he has happy but I get so frustrated,angry, and tearful in private . If you’re still there thank you for taking the time to read this . Iain
HI
a warm welcome to the online community. I am so sorry to hear about your husband and can only imagine where your head and your heart are at.
My husband was given a terminal diagnosis in early Sept 2020 (grade 4 brain tumour) and like you I was flung headlong into the role of carer. Its a tough gig!
This group has been a great support to me over the past 15 months or so. Everyone around here gets it. Friends and family are great but unless they're walked this awful path, they don't always fully understand all the emotions involved. I see that you've already spoken to MacMillan but it’s always good to talk so please remember you can 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.
Hang in there. You are coping so much better you think you are. (trust me on that). Sending you a huge virtual hug. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
