After my surgery in April 2014, I was bed bound for a few weeks. Luckily I had my family over from Australia and my childhood friend from Sydney, Terry, all staying at my house to help me and keep me company. Terry and I have know each other since we were 4 years old and he is always up beat and enthusiastic, which was just what I needed around me. As you can imagine, my diagnosis was hard for my family and friends, but it hit my mother the hardest. When I was not able to help mum (or if we were butting heads), Terry stepped up and really showed his true colours and helped to console and support my mum. He was understanding, patient and supportive to my family and was invaluable having him around the house and in our lives.
After eight weeks of recovery, and a few setbacks, my radiotherapy started on 19th May 2014, two weeks later than originally planned. I went in prior to starting radiotherapy to have a facemask molded. The mask has little dots and lines to help guide the radiotherapists as they target the x-ray beams to within a millimetre of the tumour. The neurosurgeon, Dr Karabatsou, was only able to take out 80-90% of the tumour due to its location and that there was a high possibility that I would not have use of my cognitive functions (I’d be a vegetable, unable to communicate or remember anything).
I was part of a clinical trial to identify what would be the best dosage and treatment method of a specific brain tumour chemotherapy drug. Of the four trial groups I was randomly allocated to the first group, essentially a control group in science industries whereby I would not have the chemotherapy, just radiotherapy. If my tumour were to increase in its replication rate (the tumour grows much quick) and my condition deteriorated, then they would obviously give me the chemotherapy to save my life, overriding the clinical trial.
I was treated at The Christie Hospital, in Manchester. The Christie Hospital is considered in the top three specialist cancer hospitals in the UK and is up there amongst the best cancer hospitals in Europe.
George (Georgina, a cheeky grandmother from Scotland) and Nat (who was heavily pregnant and from Manchester) checked me in every day for 7 weeks. They were a good laugh and always glowing with smiling faces from their desks. The Christie treats a lot of cancer patients and staff like these two are a breath of fresh air in such gloomy waiting rooms!
The radiotherapists often rotated, but my main radiotherapists, Rosie and XXXX, were always really friendly and chirpy. They usually play music in the therapy room, and I even got Rosie onto my favourite singers-songwriters, Jason Mraz and Donavon Frankenreiter.
The 7 weeks of radiotherapy really takes it out of you. When the tumour returns and I need further treatment, I can’t have radiotherapy again as the dosage I received was so high the first time, the human body can’t take another bout of treatment. Although I knew the effects were cumulative and would get worse over the 7 weeks treatment period, I thought from the first few weeks I had gotten away with the side effects… how wrong I was!!
Weeks 1-2: I felt slightly fatigued but generally not to bad considering my situation.
Weeks 3-4: My hair started to fall out (on the left side of my head only) and I started to feel nauseous and fatigued. The effects were starting to kick in.
Weeks 5-7: The full effects of the treatment were kicking in. I was sleeping all day, I felt sick when I ate and I lost my appetite. I only got out of bed to go to the hospital for treatment and a lot more hair fell out!
Weeks 8-9 (and ongoing for the next few weeks): post-treatment, it gets worse before it gets better. It’s a long and slow process recovering from such strong treatment and for such an extended bombardment on the body! I couldn’t imagine what patients go through if they have chemotherapy while have radiotherapy, those are strong people battling through hard times.
If you are reading this and are a patient or have just been diagnosed and are concerned about how the treatment will affect you, feel free to flick me an email through on the Contact page.