Learning To Live With A Brain Tumour

A little bit about me, my diagnosis, and my treatment:
My names Ash, I’m 25 and am lucky enough to live with my wonderful fiancé and two beautiful trouble makers Lilly and Mabel (the dogs).

Back in August 2020 I was diagnosed with a tumour in my brain stem, roughly the size of a tennis ball, and was given 6-12 months to live unless I were to undergo intensive treatment to try to stop the tumour from growing or shifting.

This did come somewhat of a surprise, originally I started to notice a few strange changes in my health during March/April 2020 but as this was around the time we all went into lockdown for the first time, I brushed off most of the things I was noticing and didn’t think much of it. During the following months, these changes in my balance, eyesight, hearing, speech, and energy levels started to become more intrusive and by July time when I started to return to work I knew something must be wrong as I was struggling to drive to work as my double vision was so bad.

Of course, being a typical young person, I downplayed all these symptoms and insisted nothing was wrong when friends or family would comment. It got to the point where I would stumble or fall and expect a little sympathy but people would jokingly refuse and claim there was nothing wrong and I was just clumsy – funny to look back on now and I really do agree that ignorance is bliss!

After struggling for weeks to see a doctor and get some help, I eventually agreed to go to A&E as by the end of August I was starting to lose movement in my left side. After a long and boring 8 hours sitting around in A&E I was lucky enough to see a doctor who got me straight in for an MRI, which revealed something was seriously not right. I then spent 3 days in my local hospital receiving intensive care without really knowing what was going on, before going into a specialist hospital with more experience of brain tumors. There I met an amazing group of people who were able to give me all the information I was desperately looking for and we discussed my options. This began with me having a brain biopsy (side note: This operation is normally done under local anesthetic, how on earth do people sit for 3-4 hours whilst someone is drilling and digging into your brain? Madness! Hats off to those brave soles). Anyway, I then went onto a third hospital with a dedicated cancer treatment department where I met even more amazing people and this is where I spent the next 15months of my treatment.

I started with 6 weeks of radiotherapy, had a short break which was then followed by 12 months of chemotherapy which I have recently finished in December 2021!

How active I was before my diagnosis and during my treatment: 

I was always a fit individual but by no means was I a shining example, I would go for a 30min walk with the dogs daily and would be quite active in my spare time too. However, this became less and less as my condition got worse, and by the time I was diagnosed, a 20-minute walk a day was pretty much my maximum.

During treatment, I wasn’t active at all, and if I wasn’t in a wheelchair, at the very least I had to use a walking stick to get around. Just walking from the car to the hospital I needed help with and it really impacted my mental health. Halfway through the treatment, I spoke to my doctor to ask when I could expect to start improving and when I would regain balance control etc to which I was surprised to be told that this would never improve, ever. Safe to say this wasn’t the news I wanted and for months I battled with depression at the thought of never being able to live my life how I wanted and having little to no independence.

On top of this, as I was underweight going into the treatment I was told I had to gain weight as quickly as possible (basically got told to eat whatever whenever – sounds perfect right?) but this coupled with the various medications I was taking resulted in me gaining 5 stone over the course of 3-4 months. Dealing with all the extra weight and added fatigue was a huge hurdle I had to overcome.
However I eventually came to grips with the fact I was lucky to still be here, and many people are far worse off than I am so it wasn’t fair to be frustrated with my situation and the best thing to do was to simply try to take some steps to improve my mental and physical health. Armed with the logic that just because I couldn’t see how I was going to get to my end goal of being fit and healthy once more, if I could just focus on the immediate steps ahead, I would eventually get to where I wanted to be. So I just started to push myself where I could, such as going for a 5-minute walk down the road, or going up and down the stairs twice instead of once. Just taking baby steps where I could which would hopefully get me to my goal of regaining my independence and being active again.

Towards the end of my chemo, I worked up to the point where I was able to go for a 20-minute walk every day, I wasn’t getting out of breath going up and down the stairs and I was able to help out with things around the house again. Probably doesn’t sound all that impressive, but, for me this was huge progress that took months to achieve.

As my fitness levels improved I started a car detailing business (just a private Instagram for friends and family but calling it a business makes it sound more impressive right?) when I had the energy. As this was something I enjoyed doing before any treatment or my tumor symptoms and I found that it was a great way to exercise whilst still doing something that I found entertaining and most importantly, it didn’t feel like I was exercising. Cleaning and detailing cars was the closest thing to work I had done in around 12 months and it helped me feel like I was getting back to normal and my life consisted of more than just trips to either a hospital or doctors.

How I first heard about MOVE Charity and my initial thoughts: 

MOVE was brought to my attention thanks to a member of the Clic Sargent team, I had previously mentioned how I was struggling with my physical health and just needed a helping hand to get started on my path to recovery at which point she told me about MOVE and everything they do. Before even speaking to any of the MOVE team I could tell it was exactly what I was looking for, having a quick look on the website cemented my initial impressions that this would be the perfect way for me to start the journey to taking back control of not just my physical health but also improving my mental health.

What my experience was like on the MOVE Programme: 

I had nothing but positive experiences during the programme, the structure was flexible and I was able to do my various (tailored) exercises when and where I wanted. Helen was fantastic and any feedback I gave based on past exercises or things I found more challenging were taken into account and were used to design the next week’s workouts. The weekly catch-ups and zoom workouts were a great opportunity to ask questions and check I was doing everything correctly, they were also a good time to pick up tips to make the most of the various exercises.
MOVE provided me with some resistance bands which were super useful in making the exercises I was doing a bit more challenging. At first, all of the exercises were done without any weights or aides, but gradually over the course of the program, this changed. First I started to use some tins from the kitchen to add in a bit of weight, and then I moved on to the various resistance bands that I was sent. I really appreciated having this steady progression in the exercises as it prevented them from getting repetitive and easy whilst also not being too challenging and off-putting.

The fact that it is not a set course, and the workouts can be changed or adapted was great. One week I had hurt my shoulder but instead of missing a few days of workouts Helen (rather last minute – my bad) was able to change the next week’s program to avoid using my upper body, so I could still get a week’s workouts in without any problems.

Personally, the zoom workouts were my highlight, I found it more motivating doing the exercises when someone was doing them with me. However this was always optional and I was never under any pressure to do it, so if this was an element that you didn’t want to do – simple, you wouldn’t have to!

What I have learned about me and my body during the MOVE Programme: 

I was surprised at how much mobility and strength I gained in just an 8 week period, considering the exercises I was doing were enjoyable and manageable. Just doing a little bit every day quickly started to add up and I was pleased that I was able to see results in such a short time frame, simple tasks like going up the stairs, using the kettle, or even bringing in shopping became easier.

Although they don’t sound like particularly difficult tasks they were things I did struggle with and I don’t anymore. I can confidently say little and often was the key for me, 4/5 assisted squats a few times a week was a challenge in the beginning, turned into 12 unassisted squats after just 8 weeks of practice. The small but important improvements I have made so far in my physical health have motivated me to keep pushing and working towards getting my health and fitness levels back to where I want them to be.

What do I want to go on and achieve: 

At the start of the program, my goal was to be able to go for a 30min walk with my dogs without any aides and without getting too tired. I achieved this target so my next aim is to be able to run a 5k. Granted I haven’t run or even jogged for years, nevertheless, I intend to just do baby steps and work my way up to it. Groups like 5k Your Way are going to be my starting point and I hope to join a gym in the coming weeks to continue my fitness improvement journey.

What I would say to someone else who is thinking about doing the MOVE Programme: 

First of all, do it! You’ve got nothing to lose, and you’re likely to meet some great people and learn a few things along the way. It’s also important not to compare yourself to me or anyone else, just compare yourself to (yourself) yesterday or last week. Focus on how you’ve improved as an individual and celebrate when you reach a personal milestone. For some people, a 5k walk would be a breeze but certainly for me, being able to go for a 30-minute walk with the dogs around the block without getting out of breath was a huge accomplishment.
Since joining the move programme and reading other people’s stories, I’ve been even more compelled to improve my health and fitness. There are so many amazing people achieving amazing things, and most have been through more challenging situations than I have. When Helen and Georgie suggested I write a blog to try to help others I couldn’t grasp the idea of my story helping someone else, despite the fact that so many of your stories have helped me and inspired me to push myself and reach my own goals.

My advice would be to always try to find the positive and be proud of what you achieve, don’t let others influence your motivation or goals (unless it’s for the better of course).

If anyone wants to ask me any questions or wants to share their experience, please do get in touch!