A Second opinion; a second chance

Grab a cuppa, sit down and please take a few minutes read this blog about a second chance; I so hope this message helps you.

I am a 58 years old, married woman with two grown up children. Ed who lives very close by and Emma who lives about 15 miles away in the funky town of Stroud. Although I was born in London we have lived, worked, and raised our family in Gloucestershire.

At the time of my diagnosis in late October 2019 I was a busy full-time educational trainer working with children and struggling to stay in education. In my spare time, I loved to cook, see friends, cycle, and walk our beautiful cocker spaniel, Bea. Like most, I loved and supported my family a great deal not knowing how much they would end up loving and supporting me!

I was diagnosed with Renal Cell Carcinoma (Rcc) commonly known as kidney cancer that revealed itself through a secondary tumour in my brain.

During the late summer months of 2019, my right arm literally stopped working. I lost the total use of my hand leaving me unable to drive, dress or even look after myself. My GP, who tried her best to help, could not begin to give me any answers. So, finally, in October I paid privately to see a nerve specialist but after waiting 3 months and still no satisfactory answers as to why my arm was not working, I paid for a full head and neck MIR scans. The results were immediately sent to the private specialist who promptly asked me to see him at the local NHS. We knew it must be serious news, and it was! A secondary tumour was discovered in my brain and I was sent to Southmead Hospital within 5-days whilst waiting for results of a whole-body CT SCAN which revealed the original cancer site as my left kidney. It was kidney cancer.

After a successful removal of said tumour in my brain, it was now time to tackle the original cause, the kidney cancer itself! I had a depressing appointment with an NHS consultant who spoke candidly about the prospect of life, and I went home devastated. I later found out that he was a prostrate expert and probably not the best person to talk to me in relation to kidney cancer!

That afternoon, during a heart-breaking phone call with my daughter explaining what the consultant had said, she said; “mum you wouldn’t buy a car without getting a second opinion why aren’t you doing one for this?” Such a simple, but oh so important point that led me to the most fantastic kidney cancer oncologist who I saw privately at the local oncology centre. They saw me through 20-months of NHS immunotherapy treatment, keeping me well and active throughout the next 20-months of what became the Covid-19 pandemic. But sadly, after I had just thought it was safe to go out and get back to normal life the cancer began to grow! My amazing oncologist felt that, as there was no evidence of cancer anywhere else in my body, I should consider having my diseased kidney removed! Fantastic news!

Sadly, my local NHS kidney surgeons and the MDT team, all felt that operating on my ‘sticky’ kidney tumour (maybe a side effect of the immunotherapy) was not possible. They said the operation carried at least a 25% chance of death during the operation itself and they wouldn’t risk it for me. I have to say, I would have taken this chance, but sadly the surgeon wouldn’t.

So, the rollercoaster feelings of end of life resurfaced yet again with being sent by the NHS surgeon to speak to an end-of-life specialist. When I came home from that appointment my daughter’s words about finding a second opinion came back to me – ‘get a second opinion mum!’ So, my wonderful sister, Paula, took on the task of finding someone else who would give me this life extending opportunity. She contacted Kidney Cancer UK who gave her the details of ‘LOC’ (Leaders of Oncology Care). This is a London group of renal specialists working from a Harley Street base and part of Healthcare UK and after reviewing my scans and notes they said, “let’s talk!” From there to today I have met the most confidence building kidney cancer surgeon I have met to date. His team had no qualms about taking the diseased kidney and tumour out as ‘we do this often here. Ruth’ and when giving me an 1% chance of death in surgery; it was a no brainier really. The operation took place at Guys and St. Thomas Hospital at the very end of November 2021 and could be done either through the NHS or going private. The surgeon of course didn’t suggest either way but as Covid-19 Omicron cases were being diagnosed, I decided to go private. I was in hospital 6-days and had 3-months of recuperation at home.

Yes, I have a large and unflattering scare across my tummy (I had a full nephrectomy) and I was unprepared for some of the sickness and nerve pain (all rectified by medication), I am now well and I think it was 100% worth it.

Towards the end of the 3-month period I had my usual CT head and body scan, and I am cancer CLEAR! I don’t know what the future holds, but for now I can begin to go out into this nearly post-pandemic world again with a fighting chance of a second opportunity. All through seeking a second opinion! Because of my daughter’s words ringing in my ears, I questioned what I was told at three vital points in this journey and through the love and support of my family, I sought that second opinion.

Today, I’m putting one step forward every moment I can. So, wherever you are on your journey, my very best wishes to you and try to question things every time.

Bottom line is: Don’t be afraid to ask for a second opinion.

Ruth Hall