Family not accepting my decision.

I'm from the kidney group and the incurables group & I hear you!  There are so many threads in various forums about similar things.  Friends and family being annoying or saying the wrong thing or just not "getting it".  And they never can "get it" because it's not them and they just don't know how they would respond in the same situation.  

The bottom line is it's your cancer and your choices.  Also it's up to you how much you want to discuss and share with them because the last thing you want is for them to give you their stress and anxiety to manage.  It can be a constant reminder of the cancer in your life when you had perhaps momentarily forgotten about it.  It's good to hear your volunteering has provided a release.  

I chose to tell 3 friends and minimal (close) family.  That was March 2022 and no one has had any update since.! My sister-in-laws have both probed, sent inappropriate (but well meaning) messages on fb.  They get ignored and my hubby just told them not to ask and shut down the conversation.  This won't suit everyone, but it suits me.  I may provide a top level update, but there won't be regular updates because cancer treatment is complicated so I'd have to explain it to them.  Bang goes my privacy.  Plus there becomes an obligation to maintain it and what about when/if it goes pear shaped and I really need personal space?  The last thing I need then is frivolous questions like "how's it going then?"!   And if I just say "the treatment is working" that trivialises the situation, and ignores the treatment troughs when it's gone awry (I was one day away from treatment being withdrawn).  

I am sure you can find a nice way of explaining you need space and you're managing it - you always know where they are if you need their viewpoint or to sound off on (if they are your chosen audience).  

Thank you so much for your reply Mmum. I’m not going to say I’m pleased that you understand what I’m talking about, because it’s a crappy situation to be . I’m actually crying as I write this because I really didn’t know what to do. I spent an hour before I went to bed last night going back over previous conversations with my oncologist. Needless to say I didn’t sleep well! I’m going to let my sister, in particular, know that I am confident that my oncologist has my best interests at heart. I hope that wherever you are in your treatment process that it’s a kind and positive place. Thanks again.

I have triple negative breast cancer spread to my liver. The reaction of your father is just so out of order, even if it comes from a place of love and fear over losing you. Only you know your body, what it can tolerate, and only you can therefore decide what to do or not do. I also get very fed up with the “can’t you just…” things people come up with, to the point I have started shutting some of them up by asking when they trained to be an oncologist. None of us really know how we will react to cancer. I was certain I wouldn’t have chemotherapy until I found myself there, and here I am on my second 6-month block. 

Thanks for your reply Coddfish. I’m seeing one of my oncology team this morning. I smiled at your comment about when did they train as an oncologist aimed at others! Thanks I needed that. I’m going to see if I can have an alternative treatment other than just capecitabine. Fingers crossed for better news. Sending you love and hugs for your continued tolerance to treatment.

Just read your bio and see your liver resection didn’t lead to remission. I had a microwave ablation procedure last November, and similarly got no benefit from it in that I had more disease by the time of my next scan. All the time the side effects are manageable I will continue to take whatever treatment is offered to me, because as you outline above, prognosis is not good with untreated liver secondaries. 

I’m so sorry to hear that you too suffered a setback after treatment. My sister asked me if I could have microwave ablation, and I’d already had it ruled out. It’s hard when you read how successful some of the treatments are when they don’t work for you. I didn’t expect to be in this situation, so like you will take whatever I’m offered, as long as the side effects are manageable. Sending you my very best wishes.