Hello, this is my first time posting. My partner has stage 4 metastatic melanoma. He got a delayed diagnosis (long story) and by the time he got the diagnosis, 2 weeks later he was in hospital with a bowel obstruction. He ended up with a high output stoma and nearly died in March this year. However, we got through that tough time and he was doing great, managing the stoma and he has an ‘Insides System’ pump which means he got off the TPN and home. We were doing great, he put weight on and we were living a relatively normal life. He started dual immunotherapy - ipilimumab and nivolumab - but after 3 cycles he developed severe colitis. He has been in hospital for 5 weeks having steroids and infliximab to try and control it but it is so bad. He has lost over 10kg weight, his stoma never stops. The staff struggle to give him enough fluids and he feels terrible when he is dehydrated.
i was wondering if anyone can give us any hope. He has lost all hope for the future as we were hoping that the cancer would go, the stoma would be reversed and I think we’ve been living in a denial bubble.
we are waiting on a staging scan. He has lesions in lung, liver, stomach and small bowel. Never found a skin lesion primary.
he is now really angry at the world, acting so out of character. My heart is breaking for him and all I can do is hold his hand and listen. I have been off work since March. I help him with his stoma and everything and we work as a team but he’s starting to push me away. I think the cancer diagnosis has only just hit him. We were so happy before the colitis - making lots of plans for the future.
we only got together last August (although we’ve known each other for 40 years!) and by December he started getting ill. We’re both 60 but young at heart.
i would love to hear from anyone who has got through this. I am planning to retire because my sick pay has run out. Our whole lives have turned upside down but I love him so much and just want to be with him.
Hi Biker Blue
Sorry to read about what you are going through. With my wife we also had a long journey to a diagnosis including almost losing Janice to sepsis.
I never got to the bit about running out of sick leave but did have a few sessions of what is classed a long term sick where my GP had signed me off with stress. In that time I managed to change roles in work to become part of a team that was perhaps less operational and I found that quite helpful.
After something of a struggle with the first type of chemotherapy they eventually tried a different kind and for Janice that managed to render her cancer stable. The really good news is it has stayed that way for over 10 years now.
Of course it took a while and quite a lot of help for us to get our minds around living with cancer rather than any alternative.
One thing I had to learn was how to look after me - if I am going to be the best help to Janice I need to make sure I am ok - not always easy and people often talk about having to be a little bit selfish.
<<hugs>>
Steve
