This is going to sound like a weird start but my wife, Lucy, was diagnosed with osteoarthritis in her hip and spine Spring last year. We have medical insurance so after a short period, she had surgery to replace her hip in June. All went well and we were attending hospital for a second steroid injection for her spine when, under the very bright, very white lights of the waiting room, we spotted that she had gone yellow. You’re getting the relevance for this forum now, I guess.
To cut a long story short, she had a Whipple procedure in November to remove a pancreatic tumour and is due to start GemCap chemo next week.
The reason for my post is I need to know how best I can help her on this shitty journey. I know there’s a concept of “toxic positivity”but having a positive frame of mind helps the chances of surviving.i don’t know where the balance is, so I know I’m getting it wrong most times.
She was slim before the op but she’s still losing weight. Chemotherapy is not going to help that, but she needs fuel to fight. However, she has less stomach than she used to have and she feels full on less food than she used to.
I am a naturally restrained person. I don’t talk about my feelings but every now and then someone asks me how I’m doing and, frankly, I hate it. They ask, and I have to think about how the love of my life has, even with all this treatment, a 25% chance of not seeing 2026, or a 50% chance of dying within 5 years (Google is not your friend in there circumstances). This is mostly the only time when I struggle to keep it together and speaking becomes difficult.
I know that we have to look forward to the chemotherapy finishing and to plan positive things. I know that it is one day at a time, too. I just don’t know how to balance being ‘the rock” for Lucy to lean on with helping her with what she actually needs. She is anxious about the chemotherapy and getting more down each day. Objectively, she knows that this is so she should gran every thing the doctors advise, but objectivity is difficult when subjectively you’re bricking it about having cancer, you’re tired all the time, and you’re facing the unknown side effects of being deliberately poisoned for the next six months.
Hi JQLR
Welcome to our community, I am Steve one of the community champions here, my experience with cancer being through my wife who has Leiomyosarcoma.
Many carers I think will recognize a lot of what you have written, I wonder however if we reversed your statistic and said the is a 50% chance of not dying within 5 years might thinks look a little bit easier. Many cancer statistics stop at 5 years because after that it become more difficult to distinguish between people dying because of cancer or dying of all the other things that might get us.
Janice has had two lots of chemotherapy, the first was partially successful in knocking back the cancer but cause other problems and so had to be stopped halfway through the course. After those problems were fixed however the second round of chemotherapy rendered her cancer stable and so we have been living with cancer now for over 10 years - certainly better than the alternative.
For me what really helped was a living with less stress course. I was getting very good about worrying about a future I could not control but could imagine all sorts of disasters and it stopped be appreciating what we have. The conscious breathing exercises were great when life decides to throw us another curveball but also good for helping me relax and get some sleep.
The second chemo Janice had was really positive with little in the way of side effects. Perhaps the trickiest part was often getting the needle in for the drip.
One of the positive things about the range of chemotherapy drugs is how well some of them focus on the cancer cells as much as it might impact ofher things the cancer cells get it worse.
Do post on here whenever and remember if it helps you can talk to someone on the helpline - I have certainly mostly cried at them in the past.
<<hugs>>
Steve
