New to this just a quick question that was puzzling me

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  • Hi all recently told my bowel cancer has spread to my lungs and is terminal. Told 6 months if I don't start chemo up to 2 years if I do. Haven't made my mind up yet. Anyway what I want to ask is I worked for the NHS 30 years a lot with dementia patients. I know of at least 3 older ladies with both advanced dementia and advanced breast cancer that lived far past the time they were given with their breast cancer this at the time was put down to them being unaware they were dying. Don't know if there is anything in this? Just brought to mind when I was thinking about the future I had planned which if now gone and it's ďefinately influenced my outlook
  • Hi Andy60, I am really sorry to hear about your diagnosis. I too was given this diagnosis nearly 2 years ago and have got to know many people with terminal cancer. I do not know if not knowing you have cancer helps you live longer but i do think a positive mindset can, and have talked to a quite a few who are well past their best before dates and some over 10 years past, Andy my cancer is in 6 organs and many lymph nodes and i have comorbidities as well, but am doing ok, so like you had the choice, time or quality I have made my decision, good luck with yours, take care.

    Eddie

  • Hi Eddiel thanks for your reply. Looks like your further down your journey than me. I only found out last Monday when at the meeting they were just waffling on so I said how long have I got because I have a lot to sort out and they said 6 months to 2 years so from foolishly thinking I was ok the month before and buying a new car. I have to get my head rounds that  it’s all changed. Anyway good luck with your journey ( don’t know if that’s the appropriate thing to say but sure you know what I mean )

  • Hi Andy, good luck is fine, Like you i was fine just before being told i was terminal, and know how you are emotionally at this time. was also in healthcare for 15 years, 5 of which were in palliative care so know how my condition will progress. Andy what I did was to sort  all my finances, will and deeds early on so i could get on with life without that worry. I have also done a DNR and ResPECT form backed up with a POA as quality of life is very important to me. PS I bought a new car last July, so you are not foolish in buying yours you are being hopeful which is good as we have to be after all we still have time to enjoy life.

    Eddie

  • Hi Andy I think you have said what I have been thinking too. In the past 2 years I have not been ill, or in any pain. I was misdiagnosed with secondary bowel cancer, which has turned out to be bile duct. I’ve had two liver resections which, I have to assume has changed things for me. I was given 6 months without treatment, and twelve with. I am still absolutely fine, but have been persuaded to try treatment. My oncologist has told me that the prognosis is not based on my individual health, age, or lifestyle! I think for some of us these are pointless. I already had a will in place, and have filed a power of attorney form for financial purposes, and will then carry on regardless. Wishing you lots of luck in your future. 

  • Hi Jools63 thanks for your reply I’m new to this only being diagnosed last June however it has quickly gone Tits up and is now stage 4  in my lungs in several places if I hadn’t gone for my bowel cancer screening I would be none the wiser and my kids wouldn’t be being nice to me all the time and back to treating me with the usual contempt  and I would probably be sat here booking another holiday.I think some research should be done on the psychological aspects (probably has ) the week before I was told it had spread and life limiting, I was going out all day getting smashed and dragging myself home thinking it will just need a few days off the beer and I will feel great. Now it’s, Sorry can’t come out I’m tired and oh I can’t walk that far I’m Ill don’t you know. Anyway Jools good luck with your journey stay positive 

  • You’re spot on there about the psychological effects a diagnosis has! I was also lucky to have mine picked up during my routine bowel check up, having had bowel cancer in 2019. It’s really easy to say to try and not let it dominate your life, but so much harder to do. I haven’t even started my new treatment and already feel quite overwhelmed. Hospital appointments every week for nearly six months. That said, as soon as it impacts my quality of life I will stop. Nothing is worth that. Wishing you lots of luck and happiness.

  • Sorry to hear about all your experiences, hope everyone is managing ok and good luck with everything. 

    Andy60, that's an interesting question, I've been pondering about it as well. About 3 years ago, my elderly grandma was diagnosed with a brain tumor (she fell down the stairs and had to do a whole body scan), the doctors prognosis was weeks and it was too risky for chemo or to operate cos of her age. We told her but cos she has very mild dementia, she completely forgot about it the next day. We didn't want her to worry, so we didn't repeat that conversation. Amazingly she's still here and doing ok. 

    My dad has terminal bowel cancer, he was in intensive care for a month, drugged up, confused or unconscious. Each time the doctors had those "he might not make it" conversations, my dad didn't hear or understand any of it and we kept on telling him that he'd be ok, we didn't want to cause him more distress. Sometimes I do wonder if not knowing the real truth got him through that traumatic experience. He's still here with us after a year, his prognosis has always been "months". He's in denial and generally doesn't trust doctors. The NHS has been amazing. I do wonder if his outlook on life and not believing the prognosis has got him through this year. However, unfortunately cancer is a progressive disease depending on the type, my dad is starting to experience pain symptoms,  I don't think he'll be so lucky this time and have another year. He's still telling himself "it's nothing major, just a bit of pain" I have to keep quiet and not mention it's the cancer spreading cos I'm scared that it'll affect his moods. 

    The future is unpredictable for everyone, we have to make the most of each day.  With 2 family members having cancer, it's reminded me that we are all mortal. I used to take it for granted that I'll definitely reach old age but now I'm not so sure and I'm more flexible with my plans.  I'm really grateful to have this extra time with my grandma and dad. Sometimes I do wonder if they are just lucky to still be here or if it's cos their prognosis didn't have a negative psychological impact on them. 

    All the best with everything! 

  • I just wanted to say how much I enjoyed reading your post. I’m inclined to agree with your view that a positive mindset, and a pinch of forgetfulness, is a very important part of life in general. I’m certainly not going quickly, or quietly! I hope your dad is kept comfortable, and that he can continue to do as well for some time yet. Thank you for such an inspiring response.

  • Hi Fallingleaves88

    Thanks for your reply sorry to hear about your family members.

    The question of knowing of the diagnosis making a difference to the outcome. Mainly the length of life expectancy Has been giving me something to ponder about Other than what songs to choose for my funeral.  When I was nursing it was common knowledge about the dementia patients lasting longer through cancer however that knowledge was based on anecdotal evidence from experience rather than any research and should rightly be disregarded as I was told before retirement . It has definitely had an effect on my mindset tho. One year ago today sat where I am typing this the slight pain in my chest I have would be from me overdoing it at the gym yesterday. It’s obviously my tumour growing now. Every ache and pain is associated with the illness. The annoying thing is I know it probably isn’t but I can’t help thinking that. It’s like a form of OCD. Anyway have to get the dogs out for a walk. Obviously not a particularly long walk. I’m I’ll you know.