Simon Bowler “the start of my journey” and only 17 months in

Hi my name is Simon, I was formally diagnosed with a rare form of skin cancer back in January’24 following various tests back late ‘23. Was it, is it rare? All I know is that every Cancer sufferer has there own unique story, all I can do is “show up”.

Luckily nothing had spread, it was all localised and I was to have a neck dissection. Yes, it’s still numb today and I have 75% use out of shoulder area but I’ll take it. Following this, it was recovery and 1 year of immunotherapy to reboot. This had complications(joints) and I had to start taking steroids to have some sort of existence. I’m a Tennis Coach by trade. Unfortunately, following a CT scan and a consultation on 28th Nov’24 I received news that I had 2 minuscule melanoma cells in my brain. The consultants reassured me that following my neck procedure this was not uncommon. “zap it out under gamma knife radiotherapy” on the 13th Dec’24 and then we’ll look at another course/plan of action re immunotherapy in 2025…

I really do feel I’ve been “bumbling” along, just showing up under the watchful eye of Mount Vernon(Paul Strickland Cancer Centre-PSCC). Whilst doing all I can to keep the money rolling in and NOT asking for any outside help.

When does my “journey” start was a question I continued to ask.

Well, here I am today baring all before you asking for your support to help rebuild mine and my families life back to some kind of normality.

It was decided that there’s a NEW Double Drug(Nivolumab and Ipilimumab) with great results and this was my plan of action. Most patients will have 2/3 doses of this every 3 weeks. My first dose was on the 4th March’25 and was told about the many side effects, the main one was dodgy bowels!! If this was to occur then you need to speak to our team straight away. After a week, it happened and I was back at PSCC straight away. Plan of action, increase the steroids(prednisone) to 100mg and they’d call me on a daily basis for my “routine/flow chart). This went on for a week and no real change until there was absolutely NO flow, my bowels had packed up? I was now vomiting!! I was now at Watford General Hospital, still under the watchful eye of PSCC having a daily dose(intravenously) of 200mg of prednisone. I am now out after a 9 day ordeal.(17th March-25th March).

I felt numb, battered, lethargic, all these things. Was this just the fact that I’d been in hospital? No, it was the heavy heavy dosage of prednisone that I was on to help combat my inflamed bowels, this was now effecting my nerve endings massively. I have no power/drive in my legs and as for my hands, it’s a wander I’m still typing.

For the first time in 40 years I’ve had to come face to face with real adversity. I’ve questioned who am I several times, I’ve tried defining myself several times. I’m a Tennis Coach with wobbly legs and a right hand that can hardly pick up a racket-let alone show any sort of intricacy but I’d still try and swing a positive out of it, try and laugh it off. Deep down I’m not ok, I’ve been stripped of my identity. I’ll be honest, last 10 days I’d just burst into tears

I am not a dweller, I have so much to be positive about, I’m lucky, I have a great family around me, my friends have been overwhelming amazing-they keep me positive, “rock bottom” will never ever happen with my network.

You’d be helping me set up a side business(online tennis sundries)that would coexist alongside my tennis coaching. This would allow me to attend my many hospital visits(next 2 years) and allow my piece of mind away from the court, can’t be 2 places at the same time.

My financial status has already taken a massive hit and with my physicalities as they are, a successful lesson is me not falling over, my earning capacity is 3hrs max on court per day. I’ve also received so much support(medically) from the NHS and of course, MacMilan will forever be close to me. 12.5% would go to each charity of monies raised.

I thank you all for listening to my story, please please help me today and I know when it’s your turn you can call on me.

Much love, Simon