Recovery is an interesting description of where I am right now, I will always be at risk from a recurrence of cancer, however the risk decreases as the time in remission increases. I am cancer free for 5 years from diagnosis, and 4 years since finishing treatment, which is a real milestone as the statistics say that I had only a 10% chance of getting this far!
I was extremely lucky with my recovery. My parents lived close enough to me so that I could move in and be cared for by them. I definitely didn’t appreciate it at the time, but having a separate room to recover was key to my survival through that stage of remission. So at 35 years old I found myself back at home in my old bedroom being looked after by my parents. Interesting times! By all accounts I was an absolute nightmare to be around (a side effect from surgery that we had been warned about). None of which I remember, in fact the only recall I have of that period was watching La Vuelta on my Ipad and having my regular pain medication, administered by my father on a strict 4 hour rotation.
Often with some difficult discussions/arguments when I wanted them sooner!
The instructions for recovery from the doctors were “do nothing”. Sounds bliss, however doing “nothing” is harder than it sounds. Removing the majority of distractions leaves you extremely bored, you sleep a lot, which is of course good for recovery.
It is very hard to describe the feeling I had after the surgery. I’m sure it is different for everyone, but for me it was complete exhaustion. Even ‘thinking’ tired me out as my brain started to heal itself from the damage of the surgery.
It was then I started to notice some of the changes I would have to get used to.
Memory was the first noticeable difference, it was awful! I would forget everything and had to be told numerous times about things, meaning I was very rude and demanding regarding my pain medication. Slowly I started to resemble the Neil who went into surgery, and as I got stronger in myself I started to want to get back to some kind of normality. It was three weeks into my recuperating stay at my parents, as I was being bathed by my parents that I decided I wanted to go home now. So after 3.5 weeks (and probably too soon) I made the move back to my house, and stages 2 & 3 of recovery started.
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 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.
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.
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 wasnt sitting in a safe place with my Therapist.
One of the things that will always stay with me is how much people care, and deep down how nice everyone is, whether it’s the nurse at the hospital, my colleagues at work, friends of the family, the person you chat to in the shop, the surgeons, the doctors, in fact everyone that I came into contact with. The reality is that the whole experience has changed my opinion of the general populous, and I am thankful to Therapy for identifying that.
Part 4 of a 4 part series to raise awareness for Brain Tumour Awareness Month, written by Neil Ladgen
I am now well and tumour free for over four years from the end of treatment.
Sadly I have lost two friends and a family member to Cancer in that time.
I now work with an organisation that supports mental wellbeing and health – thecircleline.co.uk
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