I’ve had a brain tumour three times
Lying in my hospital bed, I was still groggy from surgery. I’d just had a brain tumour removed – for the third time – and while a lot of people might have thought ‘why me?’, I didn’t. Having been in this position twice before just made me all the more determined to enjoy my life and whatever it throws at me.
Before I had my first tumour at 35, I struggled with most aspects of my life. I was a single mum and I found it incredibly hard to juggle work and being the only parent. I was the only emotional support my daughter had and I felt really alone. On top of that I was also trying to cope with what doctors had diagnosed as ‘depression’ for many years.
It was after a year of dealing with terrible memory loss – even forgetting childhood memories of my daughter – that my GP sent me for a brain scan in 2012, and it was discovered I had a brain tumour.
I was absolutely terrified, especially as I would have to have radiotherapy afterwards, but my doctors reassured me it wasn’t life threatening and removed it as soon as they could. With it went my depression and, thankfully, my memory came flooding back.
It was life changing for me because I no longer woke up every morning wondering whether I’d mildly enjoy the day or struggle through every minute.
I felt like I’d been given a second chance to enjoy life, but then in 2014 I started to struggle again to remember words and was struck down with extreme fatigue.
A visit to my GP revealed that I had a second brain tumour. This time I felt far calmer than I did the first time round. I knew that the positives of getting it removed, such as my energy and memory returning, far outweighed any fears I had about surgery.
As an introvert, I also didn’t mind that it meant that I’d have to spend three months at home recovering.
The only drawback I discovered was that by having the tumours removed I lost the function of my pituitary gland. For those who don’t know, the pituitary gland is a pea-sized gland at the base of everybody’s brain and despite its tiny size it’s one of the major glands in our body and controls our endocrine system – and we all know what happens when hormones are a little bit off.
Losing the function of my pituitary gland means I take various replacement hormones, and my pituitary gland no longer talks to my adrenal gland, which is often diagnosed as Addison’s disease.
It means that I no longer produce cortisol, which comes into its own throughout everyone’s day to help us get through things – from the most simple (breaking a nail) to the most difficult (bereavement, global pandemics). Which means I can get stressed at things others take in their stride – such as dropping a glass – the noise and then the stress of having to find all the pieces. If I am tired it can also make me hypersensitive to noise.
Addison’s disease is also potentially fatal, so I have to take tablets three times a day to stay alive.
My condition sent fatigue slowly creeping back into my life, meaning I was sleeping 12-15 hours a day sometimes and not feeling even the slightest bit refreshed. I had become unable to run, even walking to the shops took planning because it would mean I would need a lay down afterwards. Walking holidays were ruined, although my other half, who I met in 2013, would disagree because of his support and kindness. It felt like my life was revolving around working full time as an executive assistant and sleeping.
I began to feel scared. Not by the thought of having another tumour – but by not being able to to work and earn money, if I ever had to take time out for more surgery.
So, in 2015, I started my own business as a Virtual Assistant; meaning I worked from home supporting small business owners around the country, from email marketing to automation to bookkeeping – all from the comfort of my house.
The business quickly became a replacement for the income from my full-time job so I was able to leave and focus completely on working around my health and not the other way around.
Although I was constantly tired, I loved my job and life felt good. That’s why, in 2019, it came as a huge shock and disappointment to find out I had grown a third tumour in my pituitary gland.
My doctor had been concerned about my levels of fatigue, which I’d always put down to Addison’s disease, but I was told it was down to another tumour and this time it was a fast grower. If it wasn’t removed, I would go irreversibly blind at the very least.
It had to come out, immediately. It was shocking to hear, but I couldn’t just shut down my business for a few months and expect to pick up where I left off.
Instead, I decided to do a mini diary using YouTube, gathering a small following (including my clients) and took everybody on the journey with me; from when I was diagnosed to being back out of hospital and then for my return to work again.
It really helped take my mind off what was going on and make me feel confident that people, my clients, wouldn’t forget about me.
I went back to work after just four months off and my business resumed as if I’ve never been away.
My tumour is a fast grower and I’ve been told it will come back, but when, we don’t know. I’ll just have regular MRIs so the surgeons and consultants can keep an eye on it.
The hope is that I have at least a year or two respite so I can then have surgery again. I can’t have any more radiotherapy as the dose was so high last time that I the chance of me going irreversibly blind is 80 to 100 per cent. So, we’ll just have to wait and see how long it takes to return. Until that time, I’ll continue doing what I love, surrounded by people I enjoy being with.