My name is Scott and I am 53 years old. I have advanced metastatic stage 4 clear cell renal cell carcinoma (ccRCC). I had a radical nephrectomy in July 2019. I have numerous metastases in my lungs and I am undergoing treatment. I failed combination immunotherapy (ipi/nivo), and I am now taking targeted therapy (cabozantinib).
About Me: I retired young at 46 following 25+ years as an international consultant in radars and Air Traffic Control. I lived out a suitcase, literally working and teaching around the world wherever the contracts were. Now aged 53, I’m 18 months into an incurable (so they say) kidney cancer diagnosis (RCC). I married my wonderfully understanding and truly amazing wife Julie in 2016 and we live in Camberley with our nutty Springer Spaniel called Zara! I speak English, French and Glasgow slang fluently but can also ‘get by’ in most major European languages (Italian, Dutch/Flemish, German, Spanish and a smattering of Gaelic).
I consider myself a normal bloke, trying but struggling at times to live a normal life with cancer. I love football and have followed the Scotland national team home and away since the 1980s – and have attended 122 away games! I have followed my local club football sides wherever I have lived for extended periods, a few of which include Glasgow, Worcester, Brussels, Paris, Sofia, Kuwait City and my base for more than 20 years has been Camberley in Surrey where I held many a season ticket at Aldershot Town over those years – even when working on foreign postings.
My lifelong passion is travelling and have visited 128 countries in my life (lived for extended periods in 7). My wanderlust satisfied, I no longer crave to throw my rucksack over my shoulder and take off somewhere new! I’m glad I invested time and money travelling when younger rather than older! I most enjoy visiting countries with a poor perceived ‘reputation’ according to our press. These are always great fun – they are generally safe and not like their dodgy stereotype!
I have written a poem about my cancer journey (I hate when people describe it as “your journey”). That is at the end of this profile. It can be read in parallel with this.
About My Cancer: I first noticed cancer related symptoms around September 2018, visited my GP several times and got little action (come back in 8 weeks if not improved). Nine months later, in June 2019, the symptoms became unbearable and my GP finally sent me for a battery of ‘urgent’ tests. Surprise, surprise, they found an enormous 14cm diameter tumour that “used to be” my right kidney. I was on the slab within 4 weeks for a radical nephrectomy to remove my right kidney (1.42kg which is amazing when you consider normal kidney is 150g).
Have never recovered properly from the surgery and 18 months on, still take morphine twice daily due to extensive nerve damage from “open” surgical procedure (did you call me a junkie?).
My post-op histology identified RCC (clear cell) with metastases throughout my lungs and lymph glands. July – November 2019 was recovery only with no cancer treatment. Then started a 4 x infusion course of immunotherapy (ipilimumab/nivolumab combination). Works for so many but my body rejected it and I was hospitalised just before infusion 2 and again just after infusion 4 (should have stopped it after initial problem! Hindsight, eh?). Second hospitalisation was 12 days and it nearly killed me! The cancer grew rapidly in size and number of nodes under immunotherapy treatment.
I started a targeted therapy (TKI) early March 2020 called cabozantinib (medium 40mg/day tablet). Experienced many known complications and side effects. My body cannot cope with cabozantinib without regular breaks but learned how to control most side effects.
Painful and ulcerous tongue/mouth, hands and skin can be controlled (see the KCSN patient notes) but worst is the effect of cabozantinib on my feet!!! Skin comes off in sheets and I take monthly breaks for at least a week to recover. Another side effect is raised blood pressure and I had to start a BP reducing drug as well for this side effect.
My poor state of health following failed immunotherapy revealed that my endocrine (hormone) system was permanently ruined and for life I will need daily doses of some hormones as my body will never naturally produce them again: Hydrocortisone (steroid), levothyroxine (thyroid) and testosterone (male hormone). It’s been a struggle to get that balance right as well but we got there over some months and bloods tests. The dosage levels needed to be tweaked and adjusted over time! Synthetic hormones and steroids often incur unavoidable weight gain. I went from 77kg to 95kg in a matter of 6 months.
It’s a steep learning curve balancing cancer and endocrine drugs. My specialist cancer nurse plus some online forums and a contact at the Maggie’s Centres have all been a massive source of useful support. The team at KCSN know the subject so well and have been great too. I offer humble thanks to all! I have tried a few complementary therapies but find I am not a “holistic” or meditative type of person. However, body, head and feet (reflexology) massages are great to relax.
In 2 years, my lifestyle changed enormously. I have a blue badge and disabled status and when cabozantinib levels are at maximum, I really appreciate it. Walking 250m is OK but walking a mile or two with feet and toes rubbing leaves my feet painful and raw for days.
Having been through a radical operation, immunotherapy and currently targeted therapy, my further options are reducing. When I started cabozantinib I had sporadic breathing issues but my first 3-monthly CT scan revealed some shrinkage of cancer nodes in my lungs. One lung metastasis went from 2.3cm to 1.5cm. I was so thrilled and subsequent scans have been ‘stable’.
If you are in a similar boat to me, nudge your oncologist to request a bone scan – for peace of mind! I had my first ever bone scan after 16 months post-op! It was clear, thankfully, but I had been worried about possible bone mets so this was reassuring!
The worst things so far were probably my two hospitalisations under immunotherapy. Having rigors is NO FUN! Also scary are the feet – skin coming away in sheets is hard to imagine until it happens! Top tip: Your “chemo corns” will keep coming back time and again. Ask your GP or oncologist to refer you to podiatry and get your feet tidied up 4-6 weekly!
Good luck, I hope these notes are useful. If you want to ask any questions, I am always happy to share my experience – contact me through the KCSN.
I started writing poems in October, on “World Random Acts of Poetry Day” and this is the 5th one I have written now!
A POEM ABOUT CANCER
By Scott, written on 18-19 December 2020
I’ve been quite a while, not feeling great
Now I notice, I’ve lost some weight
It’s been some months so I’ll ask my GP
I get the usual response… “Let’s wait and see!”
Little do I know what’s growing inside of me!
3 months later when it’s getting worse
My bloods are taken by the nurse
The GP sighs and his fingers bend
He says he’s going to phone a friend
With the symptoms driving me round the bend
It’s now got much worse throughout the winter
Now it’s June and I’m thin, like a splinter
Still losing weight and sweats at night
No longer funny, this is a plight
This can’t go on… There’s something wrong
Once more I go to see “The Doc”
There’s no more running down the clock
To hospital, I’m pricked and poked
I’m scanned and tested, this ain’t no joke
And I’m no longer just a “normal bloke”
The medical machine starts to turn at last…
It’s cancer son, WE MUST ACT FAST!
Your tumour’s massive, How can this be?
I said “You’ve had plenty chances to see”
… that big old beast growing inside of me
The cancer surgeon sits me down
And places on that oft-used frown
You need an operation AND in a hurry
We’re good at this, you don’t need to worry
We’ll just snip your kidney out – we are so sorry
It’s a Brucie Bonus and what can you say?
It’s Incurable and its here to stay!
My “journey” beginning, or is it my end?
Everyone involved driving me round the bend!
Not terminal but incurable is the term today
Four weeks later I’m on the table
My infected organ is no longer able
At three pounds weight, it is a whopper
The surgeon got it with his chopper
My life is changed – so what have I left to offer?
Recovery is slow but steady
A full 3 months until I’m ready
A “re-stitching” error has left lots of pain
That’s me still suffering… yet again
But morphine daily ONLY JUST keeps me sane
It’s in your lungs but that’s alright
It’s not your time to say goodnight
Our new wonder drugs will keep you steady
It’s not a cure but please be ready…
… for “a high quality of “life with cancer” – said he!!
Immunotherapy is the drugs name
Some people can be cured… it’s gaining fame!
But for some others who grasp and grope
It extinguishes a bit more hope
And send you towards a downward slope
In hospital, not once but TWICE
These side effects are not very nice
My hormone system remains in tatters
It feels like life has left me battered
Please leave me and my body some time to mend
Next up we’ll try che-mo-thera-py
Brings new hope, not this painful lethargy
The side effects are hard to take
My body just needs to have a break
And I’m just fed up of all the heartache
I just cant decide, what IS the worst?
The chemo drugs or this cancer curse?
My feet are crippled and my body suffers
Each morning I wonder whats next for this old duffer!!
It must be time for a chemo ‘holiday’
That’s 9 months now with problems many
But for cancer growth there is hardly any
There a is fragile balance in my life
I’ll repay that love to my dear, dear wife
And I’ll make amends to her for all this strife
The alternatives that remain are few
We all live in hope for something new
It’s not an option for more of the knife
It might be lasers that could save my life
I’ll find a way to stay alive!!!!!