Hello,
I have just joined this forum. I was diagnosed with incurable endometrial cancer last March. I was scheduled to have a hysterectomy but developed blood clots on the lungs which precluded this. I have since had 6 rounds of chemotherapy and am awaiting results of scans.
I am finding this time very challenging, I am gradually regaining strength physically after the chemo but progress is slow. I feel I am sinking further into depression and feelings of hopelessness. I felt awful on the chemo and the prospect of having more is really worrying me. My life is limited and I feel I have lost a year of any quality of life.
I am struggling with whether to refuse any more medical intervention and let nature take its course. The thing stopping me is my family. I have an adult but disabled daughter who relies on me emotionally and practically. My husband is also physically frail and vulnerable. I am so worried about how they will cope.
Just writing this has clarified the issue and I realise I have to keep going as long as possible.
Has anyone any experience of other treatments that might help control the cancer without wrecking your health and life, or any coping strategies to make things more bearable?
Thank you for reading this
Angela
Hi Angela,
I feel similarly as you re chemotherapy, I had chemo last year (along with radiotherapy and then brachytherapy) when I was originally diagnosed at stage 3 and the effects of chemo were so awful for me personally, that I swore I'd never accept chemotherapy again.
But then this year I was diagnosed as incurable, and have just had another round of chemo (with immunotherapy)!
It was different chemo drugs and my experience on these ones was very different, and much better than last years! albeit not great of course!
I'm now just having immunotherapy and this might be an option for you (I have no idea), as its generally chemo that makes us feel so shocking overall. I've also read others mentioning reduced doses of chemotherapy. Its important to remember it is very much about "quality of life" which I know is an annoying phrase for some, but it helps me get some perspective when I get caught up in feeling under attack medically. And I do feel that way all the time, I hate being messed with in any way, from being pricked and prodded and drugged, to just dealing with appointments. I absolutely hate everything about it, as I politely nod and smile through it all.
Your oncology should make adjustments for you and what has helped me is being reminded that I have some control. You get to say what is bearable or not bearable for you, and your team will give you options and YOU get to decide what's best for you 
Regarding coping with things in general, I have regular counselling with the oncology counsellor and am also on anti-anxiety/anti-depression tablets. This was not an easy decision as I've refused these types of drugs in the past, as I really don't like the thought of messing with my body and mind and hate medication (oh the irony). but as I'm getting pumped with all sorts now to stay alive, I thought what the hell! And I honestly think it's made a difference. I'm not advocating it, just sharing what's helping me.
Strangely I'm coping better this year than last year, so maybe it's just time. Time to let our new reality sink in. Let our brains process everything, and most importantly being kind and patient with ourselves. Something I find very hard, but this is shifting as I start to prioritise myself more and get lots of rest and quiet time with as little stressors as possible.
For context, I'm a 47 year old single mum to 2 teenagers (15 and 13) and have 2 adult children (27 and 24). My 2 adult children only have me, they don't have a father in their lives or their fathers family, and neither are close to my wider family.
I appreciate your situation sounds more demanding than mine and you may find it harder to think of yourself more and will undoubtedly be concerned about your daughter and partners much needed care and support. I spoke to the family support team in adult social services, I reached out to them regarding my teenagers when I first got my incurable diagnosis and just knowing what's in place and they are there to help, put me at ease, along with Dove House Hospice and the local palliative nurse (sorry cant recall what they properly called), all helped settle my panic about later down the line.
There is a lot of support out there, and lovely professional people who have a wealth of experience to put you at ease and help you make plans, so you can put that aside and focus on you.
I so often think about refusing treatment but like you end up realising I have to stay alive for as long as I can for my children, I feel desperate to see my teenagers into adulthood, so they might possibly be okay. I'm at peace with going, I'm not at peace with leaving my children without a mum when they are so young, and it breaks my heart to imagine their grief. So I hold on to that to help me find the strength to carry on, as naturally at times it is all too much. I say it all the time, but I will keep saying it - Be kind and loving to yourself, always!
