Part 5: Discovery to Recovery

Initially there was a concern that the tumour was on both sides of my brain. This would have been fatal. After the surgery (or de-bulking) was completed, thankfully it showed that the masses on the left side of my brain were caused by the main tumour on the right pushing against the centre line of the brain. This was positive, but I was by no means out of the woods,?

Because of my personal circumstances, as a young man, with a young family and a severely disabled, terminally ill wife, my Oncology Consultant said he would do everything that he possibly could to help save me.? paid me special attention to the course of treatment that was required, the final decision was delivered to me in his consultancy office in London Bridge:

“We will give you 6 weeks of radiotherapy to mop up any of the cancer that the surgery may have left behind, then we will give you 6 months of oral chemotherapy to make sure that we’ve got everything. Then we will monitor your progress.”?

Unbeknown to me was the likelihood of recurrence was high with my type of tumour.?

So off to reception to get my radiotherapy location and schedule, along with my carrier bag of pills (see picture below), that I was to be given by the pharmacist with the strict order of “DO NOT go near newborn babies when you are taking these” “erm, okay” was my puzzled response, thinking in my head “I’m going to be swallowing these! But I shouldn't go near newborns?! This is serious”. Then on the way home as I was squashed into a train carriage full of commuters, a lady squeezed in next to me with a pushchair containing a very small baby. I spent the next 45 minutes standing, worried as to what my bag of chemotherapy drugs were doing to this small child!?

Needless to say when I returned home I was physically and mentally exhausted.?

So the therapies began with a cycle of radiotherapy for 6 weeks, and additional chemotherapy to run consecutively.

Radiotherapy

Radiotherapy is interesting, the principle is you have a highly focused beam of radiation fired at your tumour or area where your tumour was, that will explode the cells in that area. It lasts for a few minutes and is millimetre accurate, which is why you have a plastic mask moulded to your face (see picture above) and you are bolted to the table to ensure you don't move! Then everyone leaves the room, they close a lead door that is about a foot in thickness and fire the radiation at your head, while you lay there trying not to move a muscle, thinking also that you don't want to be sick! This took place Monday through to Friday for 6 weeks. By week 4 my hair was falling out, and by week 6 I was feeling rubbish (but still managing to get out on my bike, staying fit helped me through the radiotherapy).

Chemotherapy ran alongside the radiotherapy and made me tired at first and then the sickness came. It was strange because the oncology department gave me sickness patches (think nicotine patches with a different chemical compound in them) which would last for a number of days, this meant, I felt sick, but wasn't physically sick. It was not pleasant but oddly gave me some comfort, as I felt that with these side effects the drugs were clearly “doing their thing”, and fighting the cancer!

Naturally while all of this was unfolding, my mental health was also of concern. Coping with the chemotherapy regime was taking a toll not just on my physical brain, but also my mental state.?

So seeing my therapist was the answer, and I was booking slightly more regular appointments. To discuss all of the emotions I was experiencing and formulate my “plan” moving forward. I like a plan, it gives me focus on what needs to be done. The sessions gave me a safe space and helped me pick myself up when feeling down. It's fair to say there were some dark days.

Radiotherapy came to an end after 6 weeks and the doctors were pleased with the results. I got to know the team at the hospital very well. I have so much admiration for the team of radiographers and nurses who worked in that department. It must be difficult when you are surrounded by so much death and illness to maintain the positivity and smiles that they did.?

I would guess that the little victories they had - such as mine - meant a lot to them. I bid farewell to the team. We had a joke about not wanting to come back and see them, and the door to the radiotherapy suite shut behind me for the last time.

Chemotherapy (Chemo)

I was lucky with my Chemo, as I was on Oral temozolomide and not intravenous so it was more tolerable with weaker side effects. It was still a nasty drug and took its toll on me as it went about its job of targeting the cancer in my brain and anything else that resembled cancer.?

Chemotherapy works by targeting rapidly dividing cells in your body, which is also what happens when your body produces hair, creates nails, or indeed helps your mouth to heal quicker than most other areas in your body, hence why you lose your hair, nails and suffer from ulcers in your mouth.

My schedule was 1 week of chemo, then 3 weeks off for a defined period, with visits to the Oncology consultant and pharmacist to pick up more pills and anti-sickness patches. This went on for 6 months and made me feel pretty rough. Throughout the 6 months there were two things I maintained, cycling (a passion of mine) and therapy (now a necessity to help manage the psychological stresses that were upon me). Chemo builds up in your system, so in addition to the pills a regular trip up to London Bridge was required for checks to make sure I was managing. I would frequently be waiting in reception, watching the different people coming in and out of meetings with their oncologists, some sad, some happy, some broken by what they had just been told, and I could relate to all of those emotions.??

Therapy

Supporting my mental wellbeing was critical throughout my experience with Cancer and tumour, and maintaining my positive mental attitude throughout the time was difficult. I had a load of preconceived ideas about Cancer, its treatment, and how people reacted who had been diagnosed with it. Those changed as soon as I was given my own personal diagnosis, and I would discuss this in Therapy, the support that my therapist gave me was just what I needed, not just in that moment, but also to help myself when I wasn’t sitting in a safe place with my Therapist.

Where are they now?

Well I am still here, getting ready to see my 9 year anniversary of survival tick by, and then continue with life doing the best I can to help and support people and organisations in equal measures! I have two lovely daughters who I have been lucky enough to see grow into 17 year olds. I work with a great Community Interest Company working to reduce food waste and give back to my community. I also try and support and help other impacted directly with Cancer and try to give hope to those that may have lost theirs!