Hi Lou67 I am sorry to read about your diagnosis.  I have stage 4 breast cancer and have mets in pelvis, hips, spine, ribs and skull.  I was diagnosed in September 2024. It certainly is very scary and so much more so in the beginning.  My first oncology appointment he asked me what I knew about my cancer.  I said I know it is terminal.  He said no it is not terminal it is incurable but it is treatable.  As time has gone on it has got easier and I now realise I can live a good life for many years to come.  In the beginning I had counselling that Macmillan organised for me.  There are a lot of cancer charities out there with help available.  Maggies is a good one and Penny Brohn.  It is definitely good to speak to someone who is impartial and that way you can say what you feel in a safe space like on here.  I am on the Macmillan website.  There is a forum called Living with incurable cancer forum - patients only.  I am pretty sure there is someone on there who has the same cancer as you.  It is good to talk to people who understand.  I am happy to chat anytime.

Lee x

Hi Lou67, 

I have exactly the same diagnosis as you, they say mine is stage 3/4. I was also told it was treatable but not curable and felt exactly the same as you, as did my husband, when I was diagnosed in October 2025 following emergency admittance to hospital. 

I needed a double nephrostomy at that time, which was finally removed at the end of January 2026.  I was given weekly chemo (Carboplatin and Paclitaxel) but had numerous emergencies which resulted in hospital stays in those darker months and was even in on Christmas Day. 

My nephrostomy bags were removed at the end of January and life started being more manageable.  The chemo finished at the beginning of April 2026 and i have now been told to get on with my life and do what I want to do. My cancer markers at the start of chemo were 1202 and at the end they were just 10. My recent blood test this week showed they had gone to 9 even though I have had no more chemo.  It's a win win in my eyes . 

It is now 6 weeks since my last chemo and I have just started taking a drug to keep it at bay.

Having been through it myself, I understand your worries and just want to say I think you are perfectly normal to feel like this - I found the same worries were consuming me.

I think the shock of hearing the words 'cancer, incurable, treatable, terminal'  hit me like a brick. Yes, I was told it was terminal but then the meaning of terminal was explained as having it for the rest of my life and that I would die with it but not necessarily because of it   I took it to mean it was like my MS - I can never get rid of it but it doesn't stop me living my life how I want to. 

I think you might be grieving for the good health you previously enjoyed which has now been snatched away from you as well as your fear for the future  and what it might bring.  Please remember you will come through this and life will be brighter. I imagine you will be very tired at the moment as well as feeling unwell from the chemo so all of this is contributing to your sad thoughts 

I know because I had just the same thoughts as you. 

I am now at the end of chemo and I feel it is better to treat each day as it comes and try to achieve small goals each day but I don't beat myself up if I don't achieve them.  I have to think about me as a person and try to remember what I liked to do, as for so long our social life was hospital visits and chemo. I try to be kind to myself and celebrate that I am here - it might sound corny but when I first started seeing spring flowers, I felt alive, really alive.  At every family celebration, I feel privileged to be here to enjoy it.  I acknowledge how far I've come and what an amazing body I must have to deal with all of this. And this being the case, I feel it will not let me down in the future. I know Cancer is not what it was years ago, there are so many new treatments now and if one doesn't work, another will.

I wish you well for the future.  

Gilly xx

Hi Lee

Thank you so much for your message, I'm grateful for you sharing your experience, and I really hope you're doing OK.

There is a Maggies near me, so I will definitely look at the councilling, as I really think i need help processing everything. I just feel guilty feeling like this, as i know there are a lots of people in a lot worse position, and I should just be able to get on with it.

I will also look at the macmillan website, as it would be good to speak to someone with the same type of cancer

Lou x