Five years and counting. And Thank You All.

Salis 21 days ago

15 replies
50 subscribers
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Hi i don't come here often these days, but here was my lifeline and my safespace just over five years ago and for quite a while after I was diagnosed with terminal cancer, with perhaps a year to live if I had a good response to palliative chemotherapy. Well the Palliative chemotherapy did far better than advertised and since I finished my six courses of chemotherapy I have been on surveillance CT scans, now down to every 6 months! I've just had my latest scan, results due at the end of January 2026. I'm not expecting any different news, so this post is a thank you to the Macmillan team that provide this space and to all the incurables that have supported me over the last few years. And in memory of those who are no longer with us. Thank you All.

tvman 13 days ago in reply to Neil6364

Hi Neil, you've been through a lot and although you've been deemed incurable it's not time to throw in the towel, it's time for living and making lots of memories with your family and friends.

I was diagnosed with incurable bone marrow cancer in March 2015 and yes it was a terrible shock. As the days weeks, month and anniversaries came and went, I'm still alive and kicking. The haemotologist, when asked, said he can't give a guess of how long I've got, different people go down at different rates. So I'll be having my weekly treatments ad infinitum. As far as he's aware, I'm the longest surviving patient with this disease in Northern Ireland. A very good friend of mine who is taking a hiatus from this group was diagnosed incurable 2 years previous to me and is still with us, living her life and enjoying her family and friends.

So try not to be disheartened Neil even if you're like me and think about your cancer a hundred or more times a day, put it at the back of your mind and enjoy life.

Tvman x

Love life and family.

Salis 12 days ago

Hi All, thanks for your lovely messages. I have spoken to my oncologist today, my scans are still Stable Mable . We commented that we're over 5 years now and he said yes we don't see many like you!

Best wishes to everyone xxx

Sarah

chellesimo 10 days ago in reply to Salis

That is fantastic news Sarah! I’m really happy for you x

“Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou

Chelle

Leelaloo 10 days ago in reply to Salis

Hi Sarah, good news that you still have a Stable Mable. I have MRI on 10 Feb and nuclear bone scan on 23 Feb fingers crossed for same for me too

Lee 2 x

mvic 1 day ago

Hi Salis,

gosh, I was told the same in May 25, a year if I’m lucky, 18 months if I’m really lucky. I haven’t got through ‘that’ year or 18 months yet, so am constantly nervous/anxious and worrying. I worry that I’m not making the most of the time I have.
If I do indeed get past the 1 year mark, I wonder if I will then settle into this new incurable diagnosis and find it easier to deal with?

I am so happy for you that you’re so stable; fabulous, uplifting news x