My success story - beating brain cancer

I appreciate some of you may have heard this before…but some of you may not. I warn you, this will be a LONG post!

Winding back time to August 2013 when I was 24 years old I was not really a cyclist, I cycled very occasionally, usually just if I was injured from my passion at the time, being a competitive runner (sorry if that’s a swear word here!!!). I was generally doing well and I was healthy, my running times were around 16:40 for 5km, 34:52 for 10km, 1:18:00 for a half marathon…so not amazing but not a slouch either. One day I woke up feeling sick, and I was sick…thought I’d had some dodgy food and that’d be it. About 1 week later I was sick again…weird…I thought if it happened again I’d visit my GP.

Well, it happened again. and again, and again, until it became a near-as-makes-no-difference a daily occurrence, and I began to feel nauseous basically 24/7. My running began to suffer (but I was still competing reasonably well). I had numerous tests done but nothing was found. This went on until November 2014 when I had an MRI head scan which found a 3.5x4cm brain tumour, a type of slow-growing cancer called an ependymoma. Within a few weeks I was on the operating table.

When I saw my consultant I was told “the surgery is optional, but if you don’t have it, you will die. If you have the surgery, because of its location, there is a risk of death, or you may suffer a severe disability such as mutism, cerebellar balance problems or a host of cranial nerve symptoms”. Well, I figured that not having surgery wasn’t an option, so surgery it was. December 1st 2014 I was on the table, so to speak.

It should have been a 3.5-4 hour operation, but because the tumour had grown roots into my brain stem it was 8 hours. I woke up in recovery, I didn’t stay here for long because it was soon discovered I had lost the ability to swallow, so breathing became an issue. I went to intensive care where I spent approx 2 weeks. In that time I learned I had diplopia (double vision), an inability to swallow, I could not move my tongue, I could not speak. I kid you not, the exact words that went through my mind when I realised I could talk was “oh sh*t, this isn’t good”.

During these 2 weeks I was drip fed (not enough…in 13 days I went from 57kgs to 47kgs!!!) and was on a ventilator. They eventually took me off of the ventilator but I could not swallow and breathing was incredibly hard, I was on a suction tube. This led to a severe chest infection. My resting HR was usually 40-45bpm, but for the entire 5-6weeks I was in hospital it never dropped below 100 (I was later told if I wasn’t as fit as I was, I probably would not be here today). Long story short (ish!!) I needed a tracheotomy fitted to help me breathe, and a stomach PEG tube to allow me to be tube fed. It was also noted I’d developed a vocal cord paralysis.

I was released a little before my 25th birthday. I began to start doing walks etc as my balance improved and before long the sufferlandrian in me wanted to get back to running. This is when I discovered the paralysed vocal cord would obstruct my airway and restricted my breathing. Devastatingly, I was told I might never compete in running again (at least not to a high level).

Not being content with “plodding along” with running, I tried cycling, the bent head posture meant the vocal cord was not an issue. In July or August of that year I raised money for a brain tumour charity and my story spread quite far and I managed to raise a little over £10,000 which was a great achievement to me. Over the next few years I am in very regular contact with my surgeons (through Facebook, no less!!!) because they have heard of my charity endeavours and are astounded by my recovery. By now the tracheotomy had been removed, my swallow had returned and I was almost back to normal, minus some mild speech impediment due to a slightly weak tongue (something I still suffer today).

I become quite good at this cycling malarky and October 2018 I always felt a little “guilty” of not raising money for the neurological unit and my surgeon for saving my life, I set myself my biggest Mt Sufferlandria…an Everesting up a local hill. Word spread very well and this time I managed to raise just shy of £12,000 (the final figure was actually £11,784).

In 2012 I could never have imagined being so close to death, and in December 2014 as I lay in an ICU bed could I ever have imagined doing an Everesting, and raising a total of just over £22,000 for charity. I’m still in touch with my surgeons, one has moved to another hospital, but we still keep in touch regularly, and he has written a chapter in a neurosurgery textbook on my case, which is quite cool! I have attached some photos.

Handing over the cheque to my surgeon was a great feeling. It was lovely that he took the time to come for the cheque presentation!

Thanks for reading!

Ross

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Wow! Glad you took the optional surgery :wink: and glad to have you amongst us, @Ross!

You are truly a fighter! :muscle:

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I love to hear the back stories. Thanks for sharing your incredible story Ross.

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I’m out of words. My so called success story pales in comparison to what you have been through and what you have done for charity.
You fought, you won.

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Thank you for your kind words. We all get dealt certain cards and in cases like this there are only 2 options, to give up, or to fight to get back to as close to “normal” as is possible. It doesn’t matter whether you feel your success story pales… I have only done what I’ve done because I got dealt a bad hand that I wouldn’t wish upon anyone. I just tried turning it into as positive an experience as possible. I learned a lot about who my real friends are, a lot about myself, I met some wonderful people and found out that a lot of people are very generous in giving money. I was just the person who rode a bike.

The care I had in hospital, especially ICU was incredible. 1 to 1 care, 24/7. I was there for a while so got to “know” the staff, I just had to do something for them, so I picked the charity that donate directly to the neuro unit that saved me.

Regards to “I fought, I won”… I feel I am winning another battle. I had still be missing running and 2 months ago I decided to give it a crack. The not so good news is my knees and ankles didn’t like it, but my vocal cord issue seems to have resolved! It made me so happy. I tried running 3.5 years ago and it was still there, I felt deflated. When I ran 2 months ago (and I’ve been slowly upping my miles) I truly felt I had beaten this. It’s just those annual scans I don’t like…

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Thank you for sharing your story, @Ross.

It’s astonishing to read what you had to endure and even more incredible that you had the strength and will to come out on the other side.

You have my deepest respect for this. I am glad you are part of this community.

Bravo, sir. :clap:

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