Kia ora from Aotearoa New Zealand

Tiaki 6 months ago

21 replies
71 subscribers
920 views

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? ) 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.

Moi2 6 months ago in reply to ellie 73

Good morning Ellie and all. Hope uou had a good night. I slept like a brick except for loo brakes but straight back to sleep. I'm taking a break from Treatment, so I won't have any for 8 weeks, as my oncologist says my treatment is causing my recent problems, and giving my body a rest will do me good. Anyway I'm having a bag of Iron tomorrow so let's hope it does its Job, it doesn't happen right away though.

No real plans for today except washing then the world's my oyster, LOL. Its very overcast here so won't be sun bathing today. Have a good day all. XX

Moi

eddiel 6 months ago in reply to Moi2

Morning Moi, 8 weeks off treatment sounds good, I hope it gives your body the rest and time it needs to help with your problem, hear your going on your hols, sounds fab hope you have a great time, PS this is not the chit chat thread, best wishes.

Eddie xx

Moi2 6 months ago in reply to eddiel

Oh silly me ha ha, it all goes down the same way. XX

Moi

Tiaki 6 months ago in reply to anndanv

What a gorgeous story Annette I'm so happy for you. I'm loving those life milestones too - it's coming into winter here, so the electric blanket and lots of books are my happy place at the moment

eddiel 6 months ago in reply to Tiaki

Morning Tiaki, Hope you had a good nights sleep, I have a couple of Kiwi friends, they never mentioned electric blankets to me though they are from the north island near lake Taupo. We did talk about end of life issues a couple of months ago under the title's, going commando and going commando updated, not a lot of posts but thought you may be interested, There is no reason why we can't reopen the topic, because of the nature of our forum we are ok to do so. PS Annette is an amazing lady.

Eddie xx

Candysmum 6 months ago in reply to Tiaki

Hi Tiaki

Just interrupting this thread to agree wholeheartedly with your post! I too feel that I am swimming against the tide by turning down treatment. Most of the medical professionals I come across find it hard to understand my position, as they are so used to patients expecting them to keep offering more and more treatment.

I too feel quite well most of the time, and don't want to risk that changing because of getting side effects from a treatment that has little chance of making a real difference.

I'm not depressed or miserable! Enjoying my life and trying to fit a lot in!

Hugs

Kate

sistermoon 6 months ago

Hi Tiaki

A warm welcome to the online community and to the group. As you've found, everyone here is supportive and friendly. I'm sorry to read that the lung spots had grown and respect your decisions against chemotherapy at the moment.

I am also not a candidate for immunotherapy. My profile is on, if you are interested. It's a good idea to write a profile yourself as it helps others in their replies and saves you repeating yourself. Just click on your own username then profile and save when you've written it.

We had a Jack Russell years ago when I was still living with my parents. He was called Tim and was a proper character. I think I know the feeling re walking your dog. Little dog syndrome - barking and aggression so as not to be underestimated maybe. We just used to pick him up and get out of the way quick. Which wasn't teaching him anything but I think that was just his nature anyway.

Great to have you in the group. I hope you stay well for a long time yet. Best regards.

A x

Coddfish 6 months ago

Welcome Tiaki and good to hear you are currently enjoying life. There’s no reason to rush with anything, is there. As you say you can make choices when you become symptomatic.

There are no taboos on this site as far as I know, Assisted dying was discussed in parliament in the UK a few years ago and rejected. The pressure is starting to grow for it to be reconsidered with Jersey and Scotland a bit more advanced than other parts of the UK. I have to say your legislation looks good and I hope the UK copies it. Otherwise some of us pay a small fortune to join an organisation called Dignitas and be taken care of in Switzerland. Not ideal as you have to be well enough to travel independently to your appointment, as anyone who helps you can be prosecuted under UK law. Palliative care is not well funded here either, mostly in the hands of charities who have to fundraise to support their provision. I have always liked NZ, have visited 4 times despite the length of journey needed. I am a huge rugby fan, perhaps I should have emigrated earier in my life!

Tiaki 6 months ago in reply to Candysmum

Lovely to meet you Kate, from a fellow swimmer

Tiaki 6 months ago in reply to Coddfish

Hi Coddfish. There's a bit of movement here towards revamping the legislation to be more flexible around the 'less than 6 months to live requirement', however it gets tricky (as it should) when disability comes into it to ensure that we're not crossing the very murky line into euthanasia for suffering that is created by society. We also have the problem for some that you have to be competent to consent on the day you've chosen. That kind of delicate balancing act means some people express their intent very clearly for months, but can lose the option at the last minute. We definitely don't yet have it right.