Rosie croft
BTR Fundraisers Glasgow
Fundraising for Brain Tumour Research
Story
We are a group of people who have been affected by brain tumours.
Jay's story: Life had been up and down for a while, so towards the end of 2014 I started looking for something just for me. It turned out that I had an aptitude and high interest in learning about massage therapy, and so I researched and found a course that fitted my time in relation to my work (it was one weekend a month for 18 months), and my pocket in terms of finances. Starting in the January of the following year, I decided ‘Yep, let’s do it!’.
And with that, 2015 was to become ‘My Year’, the year I would do something for myself, the year that I would change and improve myself!
After four months, all my buses came at once, so to speak. In the May of 2015, my marriage fell apart and subsequently led to a slightly messy and prolonged divorce that lasted 7 months. This all started around the same time as the annual review process was going on at my work, all of which was raising my stress levels significantly.
At the start of July 2015, the stress was mounting and I was getting regular headaches as well as some vision issues. What had started as a tiny little ‘tickle’ on the very outside edge of my left hand side eye/vision at the start of June had progressed, and by the start of July the outer half of my left hand side eye/field of vision was completely blanked, like a very faded version of the ‘snow’ on a bad TV reception.
I was signed off with stress and told not to drive at that point. I wasn’t happy with this as I know my own body, and I knew that this wasn’t stress. I pushed for further checks, and it wasn’t until I went for a repeat appointment at hospital with a medical Ophthalmologist at the start of August that I was sent for an MRI as soon as I possibly could, with instructions to come back in a fortnight for the results.
That was a Tuesday, and my scan wasn’t until the Sunday, which left just over a week until I had to go and get my results. So, when I got a call on the Friday afternoon before that, I thought nothing of it. And that’s when I was given my results. "Jay, there’s no easy way to say this, but you have a brain tumour. Instead of coming back in to see me on Tuesday, I want you to admit yourself to hospital.
From that point the whirlwind started, and I can’t thank the NHS enough.
There wasn’t a bed available on the Tuesday and it was the Wednesday that I was able to be admitted. My surgery was on the Friday, and I was in for around 7.5hrs. I remember through my drug induced haze that as I was wheeled in to the ward, my Dad leant over the bed and said "hello son, do you know who I am?!". I smiled, in my minds eye, and managed to give him the thumbs up before drifting off again!
I was in the hospital for two and a half weeks in total before being whisked off to my parents for some serious R&R for two months. After that, I moved home and started six weeks of radiotherapy at the Beatson at the end of October 2015.
I had a repeat scan done in the March time, and that’s when I heard the two words I’d been desperate to hear - "all clear".
In some respects I was lucky. I had a Craniopharyngioma, a low-grade pituitary tumour. However, we discovered that it wasn’t far off doing the job properly before it was removed, and I often refer to my ‘ping-pong ball pal’ now. However, most of my pituitary gland has been removed, meaning that I’m now (as my mates point out from time to time!) a forty-something year old bloke on hormone replacement therapy!
Currently it’s 10 tablets a day, but as my most recent scan highlighted, there’s nothing left of it but some well-behaved shrapnel.
I was lucky, and I know that. Yes, I may have a bucket of side- and after-effects, but I’m thankful for everyday I wake up now.
Oh, and after missing just one weekend of my course because I was in hospital, I passed my exams at the start of June 2016 and have now changed career and run my own successful Sports & Remedial Therapy clinic!
Rosie's story: I am mum living with a grade 3 incurable brain tumour. I was diagnosed in 2016 when I was on maternity leave (2 weeks away from returning to work). In my job as a physiotherapist, I had worked to help people recover from brain surgery. I never imagined that I would be on the other side.
I was initially told that I would survive up to 6 months which was absolutely devastating. It felt like a nightmare that I wish I could wake up from. The fact that I would not get to see my baby daughter grow up was one of the most difficult things to hear. It has been awful for my family.
Thankfully, I sought a 2nd opinion from a different hospital team. They couldn't cure my cancer but they were certain that they could give me more than 6 months. I received a 6 hour operation to remove 65% of the tumour, 6 weeks of daily radiotherapy, then 1 year of chemotherapy. During this time I was very unwell and missed a large chunk of my baby growing up. My partner had to quit his job to look after both of us so financially it was a very difficult time too. I didn't realise the amount of paperwork that comes with cancer. It was difficult to deal with at the same time as going through treatment.
I am now approaching my 4 year mark since diagnosis. My lifestyle has completely changed. I had to quit my job in the NHS and take my pension. In the past I was very active and now my fatigue is so bad, I struggle with day-to-day life with a 4 year old.
I have recently become involved with the Brain Tumour Research charity Glasgow group. We all have our own story. Our target for this year is £5000. Hopefully with your help we can smash that amount.