Hi again @tots2508 It sounds like an emotionally very difficult time. Great that your other half supports your decision, you've got that rock of support. Well done for making a courageous choice, it's not simply a black and white choice for some people, IMHO. I was reading the chemo and radiation literature today that Macmillan gave me. It filled in some gaps of knowledge left from my Oncology appointment, which was helpful. And it prompted me to call my Oncology nurse to ask her take on what are the long term affects of radiation to the 3 different areas I'm going have it done. I'm glad I had that chat because the affects seem to vary and she spoke in a very straight forward way - 'this bit will get red and sore, so will this bit and it'll peel. We've got cream for that. That bit will probably be fine till the week after treatment ends...' None of the "You might not get xyz side effect" way of skirting round some of the day-to-day real experiences that other staff have portrayed so far. So that was helpful and quite grounding. A bit later, I was reading more from the Macmillan chemo booklet and noticed their support line number. I don't think I've ever called any kind of suport line before. (I'm a ponderer and a writer more than a talker). But I had too many variables in my head and I kind of wanted to talk around them with someone, rather than specifically pinpoint answers. The what ifs and whys rather than doctor type questions. It really helped me get in some kind of order what my concerns are and ways to order them, and things I need to resolve after my very fleeting and somewhat contradictory meeting with the senior oncologist - which raised more questions than gave answers. It was really good to be able to just let it all tumble out over the phone in no particular order with someone very knowledgeable but also who is outside of my immediate Onc team. Like you seem to have experienced, I got a sense that my Oncologist is fixed on one route by hook or by crook, forget the side effects, and not interested in the wider holistic aspects that are very important to me, especially regarding quality of life. There's a middle ground that needs to be welcomed into discussions with cancer doctors without feeling taboo, so that there really is that holistic approach in the truest sense of the word. At the moment I feel my Onc is in a longevity competition, duration, numbers, and hasn't noticed there's a human being in the middle of it. Towards the end of my phone call with Macmillan, I asked the nurse whether people turn down cancer treatment often. She says they sometimes do and for lots of different reasons, and different sorts of cancers. For many, it's because like me, they have other health conditions that will be negatively impacted by one or more of the treatments. Some refuse chemo purely because they can't bare to lose their hair. Some so that close family members don't have to see them weak and ill, to protect them from being a burden. Some because they're having other treatments too that will improve survival rate to some extent. Some because it's too dusruptive to their work. Some because they're older and enjoying life as it is and don't want that quality of life to change. There were so many different people's experiences she shared with me. It really opened my eyes to how individual and valid our own decisions are, they're personal and important to us, whatever anybody else thinks. I think the important thing is that the decision sits comfortably with us, and that we don't have regrets (regrets of either turning down a treatment, or regrets of accepting it and its consequences on health, loved ones and so on)
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