When I was 9 years old I had Leukaemia. The long term side effects of chemotherapy and radiotherapy treatment have left me with multiple comorbidities. One of these is radiation induced vasculopathy meaning that I have damaged blood vessels in my head and hence a greater propensity to have stokes.
I had to leave all my school buddies behind here.
11 Years – At School
Back then I was still on a little amount of ‘maintenance’ chemo.
My first stroke happened in a music class at boarding school in the last lesson before going home on Saturday. Funky music was playing and I was tapping along with my left foot in. The music stopped and yet my foot continued tapping and would not stop. I was immediately aware that something was wrong, I was worried and scared but continued to act as normally as possible in the hope that the teacher and my piers would not see. (In retrospect this was a silly decision!) Feeling slightly odd, I managed to leave the class at the end of the lesson buried in amongst my peers.
Later at home I didn’t tell mum what had happened that morning hoping that it was a one off occurrence which would go away. However, over lunch I kept on dropping my cutlery. Mum saw this and immediately realised something was up and drove me to the Royal Marsden hospital in Sutton where I was treated for Leukaemia.
The doctors thought I had Leukaemia in my head and consequently gave me more cranial radiotherapy. Later on my mum, who was an ex paediatric nurse, mentioned to the doctors that I was like a little old man who’d had a stroke. The Doctors went away for a meeting and returned informing that they’d stopped all my chemo and radiotherapy treatment with immediate effect.
I had to take a year out of school to recover. I went back to the same school but dropped down a year because I’d missed so much so had to make new friends. I had hardly any energy and consequently found it very difficult to keep up with new pals. I didn’t do any sport due to lack of energy. I must have made a good recovery because I regularly got in trouble for climbing on the school rooves. I was quite an adventurous child!
26 Years – At Work
I was working for a company in North London. One evening out and out of the blue one evening I suddenly had a massively very sore head and was violently sick in the loo. I cleared this up and left work beginning the one and half journey home to South London.
On my first bus home my whole world turned upside down. Normal everyday sounds sounded distant, similar to how conversation sounds when you’re swimming aroundat the bottom of a pool. I felt like I was quickly falling down into a black hole, much like I imagine Alice must have felt when falling down the rabbit hole in Wonderland. I was then on a floor in total darkness, apart from a bright light ahead of me in the distance and one far above. Somehow I chose the light above me. I must have been totally out of it for a time.
I somehow managed to got off the bus and catch my next one. I saw my bus come in directly behind another one. I boarded my bus, however, this did not go the way I expected. I suddenly realised that I’d boarded the wrong bus and had to get off! The first or second stop was Loughborough Junction in Brixton where I got off. I was unfamiliar with this part of Brixton and it was dark. My only option was to walk back down the road which the bus had driven along and catch the correct bus. I eventually got home.
That weekend my sister came over and noticed that my tongue was as all zig-zaggy rather than straight. I immediately caught a taxi to A&E at St George Hospital.
My recovery was good. I went home to my parents and once better and I continued to work and earn a living and live life to the full considering my other conditions.
At this time my Neurologist informed me about the charity Different Strokes around this time. I joined but have never used their services most probably because I’d been used to having to deal with stuff on my own as a result of having had Leukaemia aged 9. At the end of the day only you can deal with this In spite of many doctors help and the love of family and friends.
32 Years – At Work
I was working for a company in the West End of London. One morning I felt my arm go ‘fizzy’ like a feeling similar to pins and needles only stronger and with quickly varying intensity. Once again I immediately knew something was wrong. I left work and tubed it and walked to St Georges Hospital A&E, having to support myself on railings like a drunk or someone on drugs. No one helped me despite being dressed in a suit…although I didn’t ask. I got in trouble with my stroke doctor for not using an ambulance. I did what I knew considering I was having a stroke.
I remember getting very, very angry with the Triage Nurse in A&E. I knew I was having a stroke and that time was critical. Through a Doctor the Triage Nurse told me that the symptoms I’d described didn’t sound like those of stroke. I hadn’t been able to describe any symptoms of my stroke due to having a stroke!! Apart from telling the Triage Nurse that I’d been treated at St Georges previously and the doctor I still saw annually was Doctor X. Later on Doctor X told me that they now have a stroke specialist in A&E.
32 Years + 2 weeks – During Rehabilitation
I was in the Wolfson Rehabilitation Unit in Wimbledon. I couldn’t walk or talk properly and my left hand wasn’t working after the stroke I describe above. I’d had another stroke apparently in the same place as the one 2 weeks earlier. My incapacitated left hand got worse.
I’ve had many TIAs. The scariest of these was when I couldn’t communicate. I knew what I wanted to say but spoke utter gobbledygook. Thankfully after some rest this passed.
I currently take blood thinners, Aspirin & Clopidogrel to prevent further strokes from occurring. However, despite this medication I still get feelings of movement in my head together with a feeling of fine pins & needles varying in intensity – a clot moving around? “No Doctor…This is not psycological as you suggested”. When I get this feeling, which comes suddenly out of the blue, I immediately take 300mg of Aspirin as quickly as possible (I’m allowed to take 900mg) which relieves my symptoms thereby preventing another stroke and my life again being flushed away again down the drain again.
My recovery has been good. I can now walk and talk properly although my left leg drags a little when tired. I don’t have much energy to live life as I’d want to but this is due to other medical conditions I have.
I now live with my parents in a peaceful town by the sea and still regularly have to travel to London to attend various medical appointments at St Georges Hospital so get to catch up with old friends . This is the best of both worlds experiencing the cut and thrust of London which I love and the contrasting peace of where I normally live. I had to battle and go to court to get the DWP to pay my Employment & Support Allowance after they cut it back with their austerity measures and in addition now work a few hours a week for a local company.
It’s good to be alive considering everything. I want to stay this way. I hope to travel to Italy & Spain sometime next year to visit friends if my energy is good enough.
Although it’s been a while since I last had a stroke I still take life day by day.
Advice for Recent Stroke Survivors
- You’ll probably be very tired, feel totally exhausted and have a massive headache like you’ve never experienced before. Your headache should get better over time and some of your energy should return. Life will be different but that doesn’t mean it can’t become even better!
- It’s so very important to keep up with your exercises that a physiotherapist might advise & keep active! – even if you don’t feel like doing them. Cells will have died in your brain and new ones take over their role. Repeating activities helps them learn.
- Do everything yourself that you can. This will help your recovery and self-esteem.
- Take each new day as it comes.
- Tomorrow is another fresh new day
- There is life after, even it’s different!
- Don’t stop doing things you enjoy