Three weeks ago I had my third PET CT and my first MRI scan since adopting a ‘surveillance’ approach to my cancer treatment. I have now been immunotherapy free since December last year, almost twelve months ago.
After a hugely stressful day at Leicester Royal Infirmary yesterday, I am relieved to report that I don’t have another appointment for a scan until April next year, six whole months away. I’m not sure I’ve had a six month break between scans for the past nine years, and calculated that I must’ve have around 50 scans in total since my stage 4 diagnosis.
My day started off stress free, arriving at the hospital four hours before my appointment in order to have my portacath flushed at the Chemotherapy suite. I then began the long wait for my scan results during the afternoon clinic. Around 30 minutes after my my appointment time I was called in to see my Oncologist who explained that the MRI on my head was clear, however my PET CT scan showed a ‘hot spot’ at the top of my spinal column.
Having been diagnosed with a brain tumour nine years ago one of my huge fears is being diagnosed for a second time. The surgery and recovery were brutal and I get emotional just thinking about it. I’ve worked hard to try and block out parts of my life around that time, but it all cane flooding back to me.
Within an instant I felt very distressed, as there were two areas where the scan contrast showed a small area of uptake at my previous follow up appointment. I’d seen the ‘hotspot’ on the scan on the computer screen as I walked into the consultation, and this felt like a nightmare coming true. My mind was racing, worrying that I had another brain tumour, something I’ve been living in fear of for years, and that I didn’t know how I would ever be able to cope with another set back of such a huge magnitude. I have made plans for next year, and have a life to live outside of the cancer bubble. Cancer affects my mental health every day and I felt like the walls I had worked so hard to build up started to crash down around me.
My Oncologist explained that he needed a second opinion, as the MRI result was the more robust and reliable of the two, but something wasn’t quite right. It didn’t stop my mind going into overdrive during the next hour when my parents and I went back to the hospital cafe to try and kill time. Fortunately I didn’t have to wait long for a follow up call, and went back to see my Oncologist a little later. Having discussed with various colleagues in radiography, the conclusion was that I must’ve moved my head slightly during the PET CT scan which then gave a false reading. Who’d have thought moving my head so slightly could cause such a drama!
My scan was a PET CT, PET scan are often combined with CT scans to produce even more detailed images, however it’s likely that I moved slightly meaning that when the two types of images are put together it gave a false reading that I had a ‘hotspot’ at the top of my spine. I’ve had dozens of PET CT scans and never experienced this before, however 45 minutes is a long time to stay still whilst the scanner works it’s magic.
Once the panic had passed and the cause of the contrast uptake determined, we began a conversation around future plans for my follow ups. I find it mentally challenging to keep attending regular scans as each once presents a lot of worry and anxiety in the lead up. With results taking up to a month, I spend about six weeks in every three month period worry about having the scans and then worry about the results once it’s taken place. I’m just going around in circles and the results will never been in my control, no matter how much I wish I could change that. It’s no exaggeration to say after nine years I’m at the end of the road with it and can’t take much more.
I’ve had multiple scans over the years, I’ve lost count of exactly how many. During me appointment my Doctor and I also discussed the frequency of scans and exposure to radiation; as I am now expected to live longer than when I was diagnosed in 2010, and have surpassed expectations, so much exposure could negatively impact my health in the future. We now need to be mindful of how much radiation I’ve been exposing myself to as it may increase my risk of other illnesses, including different types of cancer in the future, oh the irony!
It was decided that as I am not currently showing disease I’ll wait six month for my next scan and follow up results, which hopefully will allow me some breathing space. I want to try and figure out what’s important to my outside of the cancer world, raising money and awareness for charities will always be important to be, but I feel I’ve lost my way and I’m not really sure who I am anymore. I’d like to attempt reignite some of my interests and live the life a 32 year old in London should be living, and not living in constant fear.
It’s so hard living In a world where I’ve been potentially offered a ‘cure’ or long term disease stability when all I can do is worry about my cancer returning. I struggle to shake off the cancer label, but also realise that it sometimes feels like my USP, which is very strange. I got asked recently in causal conversation what was important to me, but didn’t feel like I wanted to expose my diagnosis by telling people that raising awareness and funds for charities was close to my heart. It’s great, but also a bit of an awkward conversation, as I’d feel I would need to give context. I didn’t go on the This Morning sofa with Holly and Phil and speak about my life in YOU magazine for the sheer fun of it.
I am going through a phase of feeling very lost, like I don’t belong or have a place in the world where I feel I fit in. I have some many ‘lost’ days where I feel like I can’t relate to anyone or anything around me. With cancer everything feels like such a battle, from medical appointments to just getting up and getting out of the house every day. I really hope that reducing the frequency of my scans, and only having two over the next year will have a positive impact.