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 Gilly

Thank you so much for sharing your experience, and for your kind words.bit sounds like you have gone through so much, not just with the cancer but also coping with your ms.

I'm really pleased for you that your markers are way down, and I hope it continues like that.

It will be good do do the "normal" things again, once this.current treatment has finished, and I will just try to focus on that rather than thinking of what might happen. 

I will try to take your advise as well and look at the little things like sitting in the garden in sun and listening to the birds.

Take care x

Take it easy. 

Take it easy.