Kia ora from Aotearoa New Zealand

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I've been lurking around some of the threads for a few days, and thought it was only fair that I introduce myself and give a bit of my history.

I'm now 61 (and when the hell did that happen? Upside down) with stage 4 bowel cancer that has spread to my lungs. I had a colonoscopy in 2022 for a bit of bleeding and pain - very minor, but persistent. They found a tumour so removed it along with 22 lymph nodes - the post surgery report showed clear margins and nothing in the lymph nodes so I was given the all clear, no oncologist and no chemo needed. Except there were a couple of random tiny 'dots' in my lungs that showed from the PET scan so I needed a followup scan at 6 months. Just a precaution, no worries.

You can guess what happened - they did the scan and the little buggers had grown. There were 5 of them, spread out over both lungs so surgery wasn't an option. They tested the original tumour and I'm not a candidate for immunotherapy. I had a bit of an awful time around the diagnosis with the surgeon, respiratory physician and oncologist all assuming that someone else had told me I had incurable cancer. Anyway, there is a 60-70% chance that chemo will work to reduce my tumour size. The oncologist suggested a pretty wide range of life span, from one year to five.

I'm now coming up to two years from my original diagnosis, and although the tumours are still growing away, I have very few symptoms. I haven't had any treatment yet, as I absolutely decline to make myself sick for those odds when I'm not actually sick from the disease. I've agreed with my oncologist that either when I start to get properly symptomatic or when she thinks the 'volume of disease' is on the verge of being problematic, I'll try a course of chemo and see if it works.

In the meantime, I'm enjoying my 5 granddaughters, my 2 dogs, my lovely husband, and my mostly enjoyable work. No big bucket lists, just a kind of doubling down into the small things that bring joy. 

Dying trigger question below - take care of yourself and consider whether you want to scroll on ...

I've noticed that there don't seem to be any threads on assisted dying or advanced care planning - is that a choice by the forum owners? I couldn't see anything specific in the guidelines. We have legislation here that I plan to take advantage of.

  • Huh, so much for trying to give a trigger warning - the spaces were removed during the posting process!! Huge apologies if my question causes any pain for you.

  • Hi and Welcome, though   not in this situation.

    Not sure, regarding  is it  in the guide lines.

     Members do have discussion on it, and put their point of view, and we all have them and different point, on the subject..

    I am glad that you decided to post, always some one here, and you are very welcome, others will come along to say hello.

  • Hi Tiaki, I can't help but wonder if you have the right idea not having treatment,  I'm fairly newly diagnosed with incurable breast cancer and been having immunotherapy and chemotherapy since March,  I totally mourn my old "normal " life and absolutely hate the thought of my life just revolving around weekly iv treatment which is how it is now,  I know I should be grateful for the opportunity to have the treatment but it's my 3rd diagnosis and I'm really struggling with the incurable bit this time with no end to treatment,  I do agree with you regarding the right to assisted dying if things are getting worse as its an unbearable thought of suffering unnecessarily but the UK just don't seem to want to implement it !

  • Oh that's so hard! I found it quite hard in the beginning to forge my own path through this - there's such a focus on fighting, doing absolutely everything to prolong life, but I just don't really work that way. My oncologist took quite a while to understand that my decision isn't about depression or misery. The newness of the latest diagnosis for you must have been an awful shock.

  • Kia Ora to you Tiaki, Can fully understand your thoughts on the cost/benefit of treatment when symptoms are minimal, i am with you on that, We have a couple of forms here regarding end of life issues, The DNR, do not resuscitate, for those of us who would have chronic problems if resuscitated we can let it be known we would rather die and the ReSPECT form which tells others at what quality of life we would like treatment to stop, backed up with a power of attorney POA. Assisted dying is not legal in the UK. I was diagnosed 2 years ago, aged 57, told straight away i was terminal, advanced  prostate cancer with lots of mets, basic treatment radiotherapy which has helped and hormone therapy which is failing, as i can' have chemo or general anaesthetic my options are slim to none. but as i have only minor symptoms and have my three kids, seven grandkids, a wonderful partner and a nutty dog to keep me in a happy place, like you i am in no hurry for further treatment, especially if my quality of life is going to suffer with minimal time benefit. Pai te tutaki ki a Koe.

    Eddie

  • Kia pai tō reo e hoa!! The nutty dog is a fabulous addition to my life - actually I have 2, one is a 4 year old shitzu-foxy cross who is pretty laid back, and a 1 year old Jack Russell who is so curious and funny, I just adore him. Walking him is a nightmare though, so getting that sorted is one of my current projects lol

  • Mine is also a Jack Russell, Poppy she's 7 years old and still thinks she's a pup, always had Jack Russell's for their character and their intelligence which is so far ahead of all other terriers, so good luck with training him even though it will be fun, 5 grandkids all girls, what are the odds, I have 4 boys and 3 girls and another due in July, fab, Great to meet you, but nearly midnight and my bedtime, take care.

    Eddie

  • Hi Tiaki, A warm welcome to this very supportive group. I hope you will be posting a lot so you can get the benefit of others support.

    I was told there was no hope, nothing to be done and those are the words I dreaded the most. I asked my oncologist to find something I could at least try, and what she found was a Drug Trial. The odds weren't good. That was ten year's ago. Sometimes I look back and think that this was not the life I was meant to have and if I had realised the side effects from the drugs before I started them at the beginning, I wonder if I would have gone ahead.

    However, I've seen our 3 grandchildren born, start school and watched them grow. I had 1 grandchild when diagnosed and I didn't think I would see her  2nd birthday and she has now just turned 12 and will be starting High School after the summer. I've been to our son's wedding, my nieces weddings and other family events. So writing down the pros and cons of treatment or no treatment, now I can look back and think Yes I did the right thing. I think everyone has to go with their own heart and as Eddie has said, I have a DNR and POA in place and trust my family to obey my wishes when the time comes. In the meantime, I'm enjoying the birds in the garden, watching the bulbs I planted grow and every other little thing I can! Last year my husband was diagnosed with bowel cancer and I was glad I was here to help him through it. I try to take things one day at a time.

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Tiaki if you press my picture you'll see my cancer is very similar to yours only I am on immunotherapy, I've had 45 rounds of it. I've had a few ups and downs and am 3 and a 1/2 years over my sell by date. So good luck.

    As for assisted dying, we have had chats about it and some of my posts have been taken down on the subject as you have to be careful how you word it so your not offending people or encouraging others, seeing as it's still illegal here in UK.  Maybe if and when it's legalised we'll be able to talk freely about it. I am in faver and have signed all the permissions. 

    Anyway keep posting and take care. XX

    Moi