Officially incurable

Morning  Jools

Sorry you have had to come here, though you are welcome.

I cannot answer any of your questions.

Though where you started your thread, yesterday Candy mum, put one up read my new profile. If you read you will see her , recent thoughts on this.

Thanks for your reply Ellie. I have just read Candy mum’s profile. What an amazing lady. She has expressed what I was trying to explain to my oncologist yesterday. I don’t want to live in fear of dying, but want to leave this world with dignity and acceptance. I really appreciate your help.

Hi Jools!

I'm not amazing, just realistic about my options! Having read your post, personally I would go for the surgery if it's offered. It could make a big difference to your sell-by date!

If I was able to cope with large doses of steroids, without experiencing mental health problems, then I would still be hoping for as much treatment as possible! But that's not the case, and I don't want to risk ending my life in a mentally confused state. Yes, I guess what I'm saying is that I want to retain my dignity during the next phase of my life.

Your current position is much more hopeful than mine! I hope you get the answers you need from your specialist next week. I will keep my fingers crossed!

Candysmum

Sorry to hear you have joined this club, but welcome to it. 

Im currently on the fourth of six cycles of chemo. It's tough going, but Ive been lucky that the mid point CT showed response. which is great. Of course, it's still incurable but it means more time. 

My oncologist has been amazing. One discussion we had in my last session was quite relevant. We were talking about my overall prognosis and he made the very important comment that what we are aiming for here is not survival at all costs. It balance of time and quality of life. I have to admit quality of life while on chemo is... well it's up and down. Some days are fine, some days are less than fine. But it's helping and I want as much (quality) time with my wife, kids, friends and family as possible. So I am sticking with it.

There have 100% been days when I felt like giving up (the treatment, not life). Yesterday was a day like that. But it's not a serious consideration, just a rant and a vent. 

I hope you get your treatment plan sorted soon and it goes as smoothly as possible for you. Take care of yourself.

Hiya Jools63

I'm sorry you find yourself joining this group, however we are a great bunch always happy to support each other. I don't think anyone will be upset by your post, after all it's something we have all thought about on our journey. I would say this I have thought about not continuing with treatment when I've not been feeling to good and it's always there in the back of my mind, however at the moment I feel I have to give myself a chance because none of us know what's around the corner. I do support everyone's right to make their own choice. Cancer is different for all of us and it's not easy to deal with, all we can do is be there for each other and give help and support where and when we can if it is asked for.

I'm not sure any of my waffle helps but I'm happy to chat anytime, have a great day

Donna x

Hi Candysmum thank you for replying to me. I was wondering how I could send you a message! I’m not ruling out surgery, but will need some assurance that I won’t end up back in the same situation I’m currently in. I’m going to wait until my appointment next Tuesday, and see what the consultant says. I suffer from anxiety and am finding it difficult to manage this time. I hope you are keeping well and are able to enjoy whatever makes you happy.

Thank you for your response Austin. I’m pleased that you seem to be getting a positive response to your treatment. I tried chemo, Capox, but it made me incredibly ill and suicidal. My oncologist said yesterday, that I only had a partial response, and that it’s not strong enough to deal with my cancer. I’m running out of options. I don’t have children, but know that I would feel differently if I did. I’m keeping my fingers crossed that I get offered something that stands a good chance of success. Take care of yourself, and allow yourself the odd rant.

Thanks for your reply Donna. Your post made perfect sense and was very welcome. I am incredibly lucky as I don’t have any pain from my cancer, and never have! To look at me, you wouldn’t know that I’m on my second spread. I don’t know what I’m going to be offered yet, so am trying to keep an open mind. The only things that have been suggested, are ablation and surgery. We all know that no treatment is 100% successful, so I’ll have to weigh up the pros and cons next week. As you have said, we’re all doing what we think is right for us. I hope you are doing well? 

Hi Jools63 

I think the things to weigh up are what is offered and whether you and your oncologist think you are currently well enough to tolerate it. That is the way I myself would look at it and I would be guided by the team. I feel like I am stating the obvious so apologies if I am. I'm just trying to empathise and put myself in your position. The position a lot of us in the group will be in at some point. I wish you well with your decision.

A x

Hi Jools and a very warm welcome. Sorry my reply is late, I have been reading some of the posts but have been a bit busy to reply, up until now. I have just replied to Candysmum, so maybe you could read that.

My brother died of MM when he was 43 and there was nothing they could offer him. Now, there are lots of drugs for all different cancers. I was lucky to get on a Trial but when I HAD to stop it, I had my funeral etc all sorted. To look at me, apart from mobility issues, people would (&do) think I have hurt my leg and I don't explain anything. I am well past my sell by date but only because I took a chance and trusted in my Team. I hope you can do the same!