Welcome!
I’d like to share with you my story of being diagnosed with a brain tumour, living with a life-long condition and how this has impacted my mental health. It may sound like a heavy thing to read but I promise it’s not all doom and gloom.
When I was 21 after 7 years of doctors’ appointments, countless tests and lots of very heated discussions, I was finally given my diagnosis. When you know something isn’t right in your body, you are hoping to get to the route of the problem but nothing could have prepared me for what I was about to be told that day. My mum and I waited anxiously in the hospital lounge before being called into the consultant’s room. After exchange of pleasantries, he got straight to it and we were staring at what could only be described as a dark mass on the screen in front of us. With a concerned face he gave me my diagnosis: brain tumour. In my head (no pun intended), after the rush of initial dread I thought ‘ahh shit’ but out loud I said the words ‘right, okay’. Like I was totally prepared when in fact this diagnosis was completely and utterly unexpected. Not to bore you with the details but the consultant was a gynaecologist and was unable to really explain the type of tumour we were dealing with. After all, his knowledge was on the complete opposite end of the body. So after being referred to the correct department, I was told that I had a Pituitary Macroadenoma which was, due to its size, spreading into my cavernous sinus and pressing on my optic nerves. In other words, it wasn’t looking peachy.
The severity of my situation was realised over the coming weeks when I fell critically ill, being taxied by ambulance from one hospital to another, doped up to my eyeballs on morphine, until I underwent emergency surgery to try and remove the tumour. Unfortunately, they only managed to remove 25% as the tumour had wrapped itself around the two main arteries and it was risky business up in there. So after what I thought was a pretty quick recovery, I returned to work and to some sort of normality. However, after only 5 months the tumour that remained started to grow and I was rushed in for a second surgery. This time they managed to remove another 25% leaving me with 50% left. Due to the mass’s fast growing nature, I had 5 weeks of radiotherapy to try and zap the bugger.
As a result of the tumour, the surgeries and the radiotherapy, my pituitary gland is non-existent. Because of this I have a life-long rare condition called Hypopituitarism which means I am on replacement drugs consisting of tablets and injections. Without my medication I wouldn’t be here, so I guess I should really start remembering to take them on time, right?
It is safe to say that all of the above has taken its toll on my mental health over the years. Throughout my diagnosis and treatment, I always tried to make light of the situation and to stay strong for those around me. I breezed through the first operation, really pushing myself to get back to work and carry on with life as normal. However, in all honesty the second operation hit me hard mentally. I remember lying on the bed outside of the theatre, staring up at the bright light on the ceiling (it was just a bulb, not the call from above) and I was petrified. The fear kicked in and I thought I wouldn’t be so lucky the second time round. I remember my parents hugging and kissing me saying ‘see you in a few hours’ and my partner Jamie prising my strawberry Lotso bear from my hands as I was taken through the double doors. I counted back from 10, barely got to 7 and for the second time I drifted into the deepest sleep of my life.
After I finished my 5 weeks of radiotherapy, I held on to every hope that my tumour was going to behave itself and it did. In the 5 years that have followed my yearly MRI’s show my remaining tumour just kicking back, chilling with no intention of creating anymore drama. Result!
Over the past 4-5 years I have noticed a deterioration in my mental health which has had a massive impact on my everyday life. Due to the symptoms of my condition and past experiences, I have a constant fear of falling ill and being unwell. This means that I struggle to do the simplest things, like travel 20 minutes to the park to take the dog for a walk with my partner or doing the food shop. I sometimes struggle being in the house by myself or going somewhere alone. All these things I catastrophise in my mind and think of the worst-case scenario. One of the most upsetting things for me is the impact it’s had on me going travelling. I have always loved going on trips and exploring new cities but now it is a battle to even get me on the plane. I am sure that there is a qualified psychologist out there that could explain the above but until I can afford their opinion, I am going to go with the highly credited Google diagnosis of Post Traumatic Stress Disorder (PTSD).
As with every story, there is always a silver lining and here is mine. As recently convinced by my life coach, I need to remind myself of all the things that I have achieved despite going through all of the above. As I am sure most of you will agree, it isn’t easy to recognise your achievements and give yourself a god damn pat on the back. However, I am going to give it a go and publicly too. I’m really putting on the big girl pants here! In 2018, I founded Songbird Wedding Videos with my partner Jamie and we now run three successful businesses under our limited company. Working for myself has enabled me to build a life that fits around my condition. If I’m having a ‘my body hurts and I can’t move’ kind of day then I know I can take the time I need to rest without the added anxiety of calling in sick. Oh how I used to dread those calls! Or if I am not feeling in a good state of mind, I can take a step back, asses the mess in my head and lean into something that feels good i.e. 20 minutes of yoga, listening to a positive podcast or journaling with a cuppa in hand.
To wrap it up, I recently had a light bulb moment and realised that I need an outlet to talk about my health. I need to stop ignoring my condition and accept that it is a huge part of my life. It shows up every day, I shouldn’t be ashamed of it and it’s something that I’ll have to deal with until I kick the bucket. Keeping everything bottled up has made me feel lonely and I finally admit that I need some support. There’s always that fear of being vulnerable but then I thought maybe I can encourage others to share their experience and together we can make the load we carry a little lighter. So here I am, finally showing up for myself, stepping outside my comfort zone and admitting that we haven’t always got to hold it together.
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Hello brain! This was my first MRI - the big white mass is the tumour.