1 post tagged “cancer childhood”

Thought i may as well use this and start the blog about me and my thoughts etc. i went to see the doctor the other day and she said i should write a book about myself and everything thats happened to me and how i cope with it, well i though a book may be a good idea but i find it hard to write a letter never mind a book.

So, "a blog" i thought, and here's my opportunity. You see what the doctor meant is that with the condition of health that i have gone through and the affects of it that if i wrote about it it may help not only me but others too that are having long term health problems or any illness to be honest.

For those that don't know, and i actually don't think i have told anyone on here - maybe i told anne, i dunno, some of you will know i had an operation recently to remove my thyroid gland this was a precaution against cancer and the future perspective of getting cancer. Whisht! lads, haad yor gobs, an' aa'll tell ye aall an aaful story, ....when i was 4 years old i was diagnosed with having a brain tumour ( medulloblastoma ) and i was 70/30 to survive too - yet here i am writing this .

Anyway, the treatment after the successful operation was both radiotherapy and chemotherapy. These treatments were directed at the back of the head, more or less the base of the skull and top of the neck, with me being so young the radiation also affected the front side of the neck, which in essence set off the growth of suspicious and possibly cancerous tissue. Hense the the op to get the thyroid removed to ease my mind of all possibilities that would lie on my mind.

Taking two tablets a day for the rest of your life is not the worst thing in the world for having a clear worry free mind, compared to the worry and constant upheaval of my life to keep a check on the situation if i hadn't had the op.

But i have only told you the beginning and the current status of my problems - other things ensued as an affect of the treatment i had too - but leave that for next time.

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Later on in life i found out that whem my mother first took me to the doctors he actually missed the symptoms of the brain tumour and said something like i was just seeking attention and needed to be given a good smack, it was actually a doctor at the eye specialist hospital that discovered the tumour. I really felt full of anger and i wanted to get face to face with the guy who said that about me and shout at the weed of a man untill he felt so small, but then what would that have achieved. Maybe if it had been discovered earlier, just maybe - who knows, i hay not have had the after effects i have had, but still not much of a professional doctor if you come out with something like that especially when you havnt checked out all avenues of possibility.

This experience is probably the one that made me have a loathing for going to the hospital, close to a month if not a month (i.e. four weeks) in hospital is enough to put anyone off i imagine - still the food was better back then even if it was mince beef in different guises throughout a week. Plus i used to get loads of toys, lego, star wars figures and stuff like that to balance the constant number of scans, injections and regular procedures of which the removing of the staples from my head not being too pleasant but the worst being a lumbar puncture to remove the fluid from the spine, jees that makes me shudder looking at that link even now.

I remember i used to like the tea time because i used to get lemon cake - mediera cake with lemon jam and cream through the middle with yellow lemon icing on top yum. I still love that to this day, i get it in the supermarket every now and again. I also remember the walks out (well - rides out for me in a chair) to the shops near the hospital with my mam, dad and grandparents, nice doctors in that hospital too although i remember the guy who did my operation i kicked him - not on purpose i dont think, you know the relex test well i have tickly feet or did hehe.

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Something has just come to mind as i think about what i write about today, the process of the radiotherapy treatment involved me having to lie belly down on the machine and in order to do so and let me be a comfortable as possible in such a situation a mould to fit my face needed to be made for me to rest my head in. This was not my most favourite procedure as it involved making a plaster cast of my face - i.e. covering most, if not all, of my face in order to make the mould for me out of plastic - not the most pleasant thing for a four year old boy having your face covered in plaster cast you can imagine, so i guess i wasnt all that pleased if you get my meaning.

I recall that i was on steroids which had the effect of making me bloat, i remember that the buttons on my shirts kept popping off - which was kind of funny, imagining i was turning into the hulk hehe.

That place certainly left its impression on me and i remember vividly having some strange dreams involving that place in great detail and even places that my mind just totally made up.

Having a stroke while in hospital also caused further complications as in i ended up with a condition called lazy eye.

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Now then, where was i - oh yeah, the eye thing. Well to get the eye condition corrected i needed to go into hospital (sheesh, again!) this time to the eye hospital. I was five by this time, nearly six as i remember having my birthday in the hospital.

Amazing how painfull it is to try and open your eye after you had an operation on it - eek! - don't recall much really apart from having a big old pad taped over my eye and having to wear an eye patch for a while. Turns out though that the surgeon/doctors had overcompensated in trying to correct the lazy eye and as a result i have double vision, as it wasnt't enough trying to get my coordination and balance back to an acceptable standard after the removal of the brain tumour i now had to work on getting my vision. I have had double vision so long now i'm used to it, doesn't cause me any bother really unless it's on my mind - as in its a topic of conversation then i notice it - as i write this it has come to prominence.

Had to wear geeky glasses with thick lenses for a long while ~ cringe. But that really got to a point where i couldnt stand them, apart from the constant jokery at school , the lenses would have to be so strong to correct the double vision they would probably do more harm than good, plus the fact that my actual vision is fine - not exactly 20-20 but good ennough.

the only thing is that i am unable to drive, well not exactly true but as far as my opinnion goes anyway, which if i'm brutally honest saves me one hell of a lot of problems and money not running a car and i do quite enjoy the travel on public transport - mostly - so all in all its all fine by me .

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Now then, the adverse effect of the radiation to my body was that it stunted my growth, the radiation from the the two treatments affected my bodies ability to produce growth hormone at a normal capacity - i don't recall weather this was a total stop in the hormone or just a slow in the rate of production. Either way i then needed to be put on a course of treatment to give me back growth hormone, this was done in a method much like that of diabetics who inject themselves with insulin. I had all the supplies, i had my nifty little (well, rather big actually) injection pen thingy and the vials of erm...stuff..hehe to inject myself again much the same as a diabetic using the leg, belly or erm bum cheeks .

You see the thing is the skin hardens if used too many times for injecting, therefore there is the need to move around areas and locations to inject and the only way i can describe the actual injecting process is "throwing a bart into a dart board at close range" - you literally keep the pen straight and jab forward as if you can imagine you are throwing a dart, obviously you don't let go , then push the top of the pen to inject simple as.

I don't recall how long this treatment lasted, but i guess i wouldn't be 5 ft 7" without it and looks as though i was meant to be much taller - well over 6 ft and to be honest i don't think i would really have enjoyed that all. The weird (disturbing rather) thing is the doctors always said i might have the tendency at leaning towards being diabetic - now thats definitely something i hope does not happen, and not only because i don't want to go through that process again but i just don't think i'd be able to cope - that would definitely be the last straw.

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Complications all the way, there's always something else to rear its ugly head but i've learned to live with it not happily though thats for sure. The growth hormone deficiency, not caught as early as it should have been i'm left to believe, has left my body slightly - lets say not normal as it should be, i have longer legs and shorter torso as in not a balanced medium. To boot i already had a weaker left hand side due to the stroke affecting both strength, movement and coordination in the arm, hand, leg and foot to a certain extent.

You'll forgive me i'm sure, these thoughts don't come out chronologically; Once well enough to get back into schooling i was enrolled into a specialist school for all varying degrees of disabilities until i got the point when fit enough to go into a mainstream school. I remember i had to wear this padded helmet type protection for my head - same sorta shape as a cyclists helmet only with....well kinda hard to explain.

So that was, kinda weird to say the least. Some nice teachers there i remember, Mrs MacNight was my teachers name i recall yep that was it. I can clearly see the place in my minds eye as i write this, a good place in all for its purpose a mix of junior school and therapies including indoor heated pool, physiotherapy - i also remember a cooking class, computer room and things of all weirdness a hair salon .

Heh, learning to swim eh? never a big fan of water and still not, don't think i'm any good at swimming - although i guess i could muster something if necessary . I had the lot, the inflatable wings and the floating board, mostly learnt the pushing off from the edge of the pool and swimming on the back thing, what's that one? haha oh the backstroke? that sounds about right. So not exactly a natural to water and don't really participate in that sort of thing to this day, not even on holiday i hate those sit on the beach or around the pool all day holidays - would rather go do something interesting go see Sheswan and China, Machu Pitcchu, Scandinavia, i'm more a doer than a sit and relax type of person.

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It eventually came to the point where i was able to back into mainstream schooling, and i recall the hassle and all the fighting that my mother had to do to get me into a decent school as we really do have some nasty schools with bad reputations of the pupils and teachers. The school i was put into was a Roman Catholic School where the head, and deputy head were Nuns, the head teacher was a nice woman i recall but the deputy head was a bitch and then some .

The teachers were nice - mostly, you always get a couple - and life goes on as normally as it possibly can, school was school, kids were kids you know what i mean. The usual check up appointments at the hospital to see everything was going smoothly - which is now evident that it wasn't, but they hadn't spotted anything at that point - not till i was transferred over to a sister hospital and switched to the children's outpatients there was the growth hormone problem spotted (i think) yes must be.

This is a bit of a blur, i don't remember exactly which way this goes around but never mind i'll continue. It was either in the summer of 1991 or just after i'd started the senior school that September , incidentally the senior school was a Roman Catholic School which was all boys - not mixed like the junior school as there was one all girls school just down the road, the sister school if you like of the one i went into.

Anyway, slight detour there, yes, so summer or just after starting senior school not sure.
I was standing talking to my mother in the kitchen one day when all of a sudden something strange happened, i started to go all tingly down the left hand side of my body - a feeling like pins and needles - mostly in the hand and arm to start off i recall then the sensation became stronger and moved up to include my face and as i was talking, explaining what was happening to my mother, my speech became affected as i slurred words while the left half of my face and mouth became numb.

A most worrying and horrible experience as i had no idea what was happening, as you could probably imagine if this happened to any of you. After what seemed like far too long, but in actual fact was only a few minutes it passed over me and i was back to normal. A hospital appointment most quickly ensued and a scan took place of my head to see what was wrong, a calcified blood clot was discovered that was thought to have caused a mini stroke. Thankfully this causes me no bother now although from time to time i do wonder as on odd occasions my left hand and lover part of my arm will get pins and needles and go numb to the point of dead then suddenly spring back after a few minutes, whether that is remnant of the clot or just a trapped nerve at the top of my arm i don't know.