Kidney Not

Telling the Young People - Jan 2022

2026-01-07T21:32:12Z

After I was diagnosed with treatable metastatic kidney cancer on 24th November 2021, my husband and I discussed who to tell and when. The first decision was easy. Regarding telling our immediate families, we had no plan forwards.&n...(read more)

Ophthalmology - 16 Dec 2025

2025-12-16T07:44:31Z

After multiple reminders for my overdue eye test, I went to the optician on 01/10/2025. It was just for a standard eye test. I went in with no issues but I came out realising I didn’t have good vision in my left eye and a referral t...(read more)

Four Years On

2025-11-24T08:13:04Z

Today is 24th November 2025. Four years since my urology appointment informing me I had incurable metastatic kidney cancer. I don’t feel like I have incurable cancer any more and it’s not a worry. It does inconvenience me.&nbs...(read more)

Uh oh . . . . . . .

2025-09-19T16:35:35Z

I had my regular monitoring scan on 7th July and catch-up with my onco on 29th July. There is no problem and we agreed to catch-up again in March 2026. But wait! Two weeks later my onco phones out of the blue! There is a problem.&nb...(read more)

Onco Check-in 28/01/2025

2025-01-28T18:24:58Z

I had my first CT scan after I stopped treatment on 17/01/25 and today I popped in to WGH Edinburgh to check-in with M. It seems I've forgotten all my treatment management tricks. I wore a (new) top with tight fitting sleeves and a ...(read more)

Three Years On. 24-Nov-2024

2024-11-24T08:39:08Z

3 years on and I’m still here! I have passed the first significant immunotherapy milestone which is 2 years of treatment. I am no longer on treatment – just watch and wait scans. My last scan in July 2024 was 23mm. ...(read more)

Modify Trial Sign-off

2024-07-26T19:21:18Z

I had my last treatment cycle in June 2024. I’m really relieved to have finished and looking forward to the next stage. I believe the next stage will comprise fewer trips to WGH (Western General Hospital), a return to more “no...(read more)

Stopping Treatment - March 2024

2024-03-19T18:49:22Z

How things change. When I started immunology, I thought it was forever. As I became more educated, I learned about the diminishing incremental benefits over time. Also, that for some cancers there was a 2 year time limit on immunoth...(read more)

Embarrassing Bodies

2024-02-21T08:34:14Z

In November 2023 I started to itch “down there”. It was occasional, not daily, but quite intense. I acknowledged it and wondered whether it would reach a threshold requiring action. Hope not! My end-of-November treatment...(read more)

CT Scan Extravasation

2023-12-06T18:12:28Z

I went for my standard CT scan on 29/11/2023. I had a job interview (1 of 2, same company) in the afternoon so I needed to pop in and out with no delay. I’ve done this on loads of occasions over the last 2 years. N...(read more)

Two Years On

2023-11-24T07:40:38Z

Two years ago I was diagnosed with stage 4 RCC on 24/11/2021. What’s happened this year? Not a lot! Treatment has continued and the primary tumour continues to shrink. The latest size is 23mm which is an OK outcome from ...(read more)

Modify Update - Oct 2023

2023-10-10T17:38:42Z

I’m now on week 18 of the 2 year ModiFY trial. Time for an update. The first 2 months were hectic with appointments most weeks. Since September the injections are every 12 weeks. But there are so many check-i...(read more)

ModiFY Trial Day 1

2023-06-06T18:07:05Z

The ModiFY trial has started! Whoop whoop! This is a trial of a new vaccine sponsored by Scancell. The official title is “A phase 1/2 open-label study of Modi-1 in patients with breast, head and neck, ovarian or renal cancer&r...(read more)

Covid

2023-03-31T17:58:52Z

Isn’t the cancer journey uncertain? You feel you have it “sorted” only for something to happen and challenge the strategy you had come to terms with. . . . . or had you?! I had been cheerily thinking how quickly the four...(read more)

Trials and "tribulations" - March 2023

2023-03-19T17:03:06Z

I haven’t updated for a while. I think that shows I have moved into another phase. The treatment is established and a new sense of normality exists. Treatment has been progressing with no further incident and the primary tumou...(read more)