On June 8th 2019 Trevor Gibbs, David Holloway, Daniel Howell, Daniel Johnson, Tom Osborne, Lee Stephens, Guy Swains, David Wood and self proclaimed base camp king/driver John Robertson will be attempting the 3 Peaks 24hr challenge on behalf of The Brain Tumour Charity. This will involve scaling the highest peaks in Scotland, England and Wales all within 24 hours.
Several of our team conduct fundraising events each year and after hearing news of Rachael Harris' diagnosis we decided to ask which charity she would like us to fund raise for. Rachael has chosen The Brain Tumour Charity and all of our efforts will now go towards raising as much as possible.
The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families. We fund pioneering research to increase survival, raise awareness of the symptoms and effects of brain tumours and provide support for everyone affected to improve quality of life. We are committed to having the biggest possible impact for every person affected by a brain tumour, and to defending the most amazing part of the human body.
Well this all started in July 2017, so it’s a long story but I’ll try not to ramble on too much if I can help it.
It all started while I was at work at the York RSPCA. I started to feel unwell and fainted. My mum came to pick me up because I had started to vomit, all the colour had drained from my face and my manager had become extremely concerned. Unfortunately I still haven’t returned to work to this day, as that night I had between 4-5 seizures one after another, it was terrifying as I’ve never had one before and even more so because I was conscious through the first few. I was totally aware of what was happening, who was in the room, people talking to me, I even heard one of them phoning for an ambulance, but I couldn’t speak. The next thing I knew there was a paramedic standing over me desperately trying to get some Diazepam into my vein to stop the seizures. Things got a little blurry after that.
When I woke up I was in York Hospital on the stroke ward, which was what they thought I’d had, because when I came to I had a lot of
weakness on my right side. However while I was in A&E they’d done some scans, and to say the results came as a shock was an understatement.
It turned out I had a brain tumour. As soon as they told me the first words out of my mouth were “I’m going to have to leave work” and then the tears came. We were then moved to a side room where my family and I could have some privacy while the diagnosis sunk in. My mum rang my manager and she was shocked to hear the news, but told my mum they would keep my job open as long as it took for me to get better, she then had the horrible job of telling all the staff, who were obviously really upset. The amount of gifts, flowers and visitors that then arrived was amazing.
I was soon referred to Hull Royal Infirmary for a detailed MRI and to meet with my surgeon. He explained they wouldn’t be able to remove the whole tumour as it was too close to the part of the brain that was responsible for speech and movement and I could end up with some form of paralysis. To me from the scan it looked like it covered the whole left side of my head! He told me it was a slow growing tumour so had probably been there since puberty, but now had got to a part of the brain which had caused the seizures. I was put on anti-epileptics and had to surrender my driving licence, I was also told it was too dangerous to fly.
This was heart wrenching because I was due to go to one of my best friends weddings in Prague. Everything was booked and I was devastated.
On 16th August (mums birthday!) I was wheeled down for brain surgery, which lasted 6 ½ hours, a very long and anxious wait for my family and partner. When I came round in ICU the operation had left me with a metal plate in my skull, 4 screws holding it in place, a very tight pressure bandage, which was causing me horrendous headaches and only able to say two words, yes and no. Sometimes when I wanted to say one the other came out. Frustrating! I often ended up with meals I didn’t want because I had said yes when I meant no. After 7 days this got a little better, my speech was coming back slowly, and I was improving in other ways too. So I was moved out of ICU onto a different ward, and after another couple of days, discharged.
After a couple of months recovering at home I went back to Hull Castle Hill hospital this time to be told by my oncologist that I had a grade 2 tumour, and the surgeons had managed to remove 70% of it.
Radiotherapy was scheduled on the 27th December. I went down to the department that day to have a scan so they could pin point the treatment to where there was still remaining tumour. I also had to have a mask made to the exact shape of my face, very tight, so I couldn’t move while the treatment
was being done. It was also going to be clipped down to the bed I would be lying on, which was really scary the first few times but I got used to it.
So after Christmas I started my radiotherapy, this meant going from York to Hull 5 days a week for 6 weeks. Of course I couldn’t drive
because of giving up my licence so somebody else had to take me every day, my
mum, my partner Steve and my Auntie took on this job. It was nice to have someone to wait with me though as the radiotherapy machines often broke down from over use, so you got moved to another machine, but of course other people had already been given that machine number that day so you just had to wait. After about a week of treatment they had to put me on steroids as my brain had begun to swell and this was causing my hand and arm to start shaking, which is how my seizures start.
After I’d completed that I had a month to recover and then started chemotherapy, which would consist of 6 cycles, 3 treatments per cycle, and would last around 9 months. It’s called P.C.V chemo because it consists of
3 different chemicals. On day 1 of a cycle I will be given 5 tablets to take that night. On day 8 I have an I.V treatment and get a 21 day course of different chemo tablets, and on day 29 I have another I.V session. After all
this I get 26 days to recover before it all starts again. Each time I have to have a blood test before any treatment can go ahead (needle phobia cured!) and if anything in my bloods are not within the acceptable levels the treatment that I am due to have that day cannot go ahead, and then they have to test again the following week. This once happened 3 weeksin a row!
As you can guess all this makes me feel really sick, in fact after the first I.V I was sick repeatedly the next day and had to go through to Hull that night (an 80 mile round journey when you’re feeling sick is not at
all fun!) they gave me a stronger anti-sickness drug by injection and luckily it worked. Each time now I have to be given stronger anti-sickness tablets, they don’t cure the nausea but at least they stop me being physically sick. After the 1st cycle though I started having seizures from the different drugs. They are terrifying because like the first ones, I am completely conscious all the way through, they feel like they’re going on for ages and I’m scared I’m never going to come out of it. They tried different ways of combating this side effect and at cycle 5 they finally cracked it, an increase of my anti-epileptic’s, steroid tablets and diazepam for every lot of treatment. So during the 5th cycle I didn’t have any seizures. As well as being
really scary each time I have one it’s also really frustrating as it delays me applying for my drivers licence. You have to be seizure free for 1 year before they will even consider letting you behind the wheel.
So that’s where I am at the moment waiting for cycle 6 to start on 28th Jan and hoping its seizure free. Then I can start to get back to work slowly, finally apply for my licence back in October and regain some of my independence.
When Lee told me about this challenge I was touched they wanted me to choose the charity, and very grateful to them all for taking this on for a cause that’s obviously very close to my heart.