Since my holiday I have been busy socially and professionally. I joined a company as a Director on the Board, to take over a Local Authorities Housing Department and that has kept me busy. I have been undertaking more studying to do with clinical hypnosis and psychotherapy and have been making plans to start an international clinic, offering hypnotherapy, life therapy, spiritual insight and guidence to private clients in the UK and USA. Living in the modern world, I needed a website, which I have developed and setting up the biz takes time and resources. I have started going out on the dating scene too. I thought it was about time to put the past behind me and see what it's like dating in 2004! I have had offers from attached people, which I find quite strange! However, I am enjoying going out meeting people much more and getting my confidence back to actually approach women! I also got into contact with my dad, who I haven't spoken to for about 4 years after a silly disagreement. It turned out he had a cancer scare at the same time so that gave us common ground. We are now communicating regularly and back to the old way we were.
I had a good going over heart and lungs wise at the start of October and thankfully there's no change there. Everything is as it should be. The back continues to get worse and as the cold weather sets in here in England thats when I will really suffer. In short I am having a good life, coping with all that is thrown at me and hope the future remains bright. I'd like to thank everyone that emailed me to ask where had I gone..what happened to my blog! It's nice to know people actually read them and find them interesting.
Also to those people that asked me what happened to the dating site idea for people with health problems, I haven't forgotten!..honest!! It's in progress and I will let you know individually when its done. Hope you will be the first to use it! I'll be on there so don't forget to look at my profile! He he!!
I heard a funny story the other day sitting next to a couple of ladies in a bar. They were about twenty something and one was talking about her boyfriend and the other talking about the loss of her mother last year in a car accident. The one with the boyfriend was fed up with her boyfriend because he spends so much time with her, buys her 'stupid' gifts and is just too nice! The other was angry that her mother was taken from her and how hard she is finding it and started going on about if there was a god he wouldn't have allowed it to happen. Maybe I shouldn't have gotten involved but I offered them a drink and said I could'nt help overhearing their conversation and would they mind if I made a point. Which they allowed me to do. My point to them was this.
" I'm sorry for your loss (to the girl who lost her mother) however the world is not perfect and you must have some faith, to have recognized god as the person to blame. God gave us all something called free will. The person that went into you mother's car while drunk, chose to drink and chose to drive, he used his free will, god never made him do it, he chose to do it. We all have free will and... (turning to the other girl) you too have free will. If you're not happy with your boyfriend, you can choose to find another." With that I said think about it, and left.
They looked at each other and shuffled uncomfortably in their chairs as I was leaving. What amazes me is that we are all to quick to blame other people for the things that go wrong in our life. I am sure that many of you that have a health problem do not blame your neighbour or your sister or your mother or even god for what you go through every day. Some things are just meant to be. It's how we live the life that we have, that determines what kind of life we have. And as someone that has found himself ready to start dating again, I found the other girls' comments about her boyfriend being too nice..a scary thought. Don't we all want to be with someone that is caring and attentive and nice? Or am I so out of touch that 'treat them mean, keep them keen' is the new world order?
]]>Here I was sitting nursing the news that I could have cancer of the mouth and it would be confirmed by a visit to an oral surgeon. My dentist had written to the hopsital and all I had to do was wait for the appointment. Easy. The letter came and to my shock and disgust, I have to wait 16 weeks for an appointment just to be looked at! Thats 4 months. What can happen in 4 months? Will I be here in 4 months? So I go to my planned appointment with the dentist to have lots of work done on my teeth. Before we start I tell her about the appointmen to see if she can get me seen quicker. No such luck, it's the state of the waiting list system. So many people are on it, I will have to wait.
Okay so I will just tell Mr. C to wait. Do'nt kill me yet until I have waited 16 weeks!!! What a complete load of horse crap!! I was in the chair for an hour and fifteen minutes. Had some fillings, bridge work done and my teeth super cleaned!! I came away with a Hollywood Smile. It's amazing how a nice smile can give you so much confidence. My teeth had been savaged by endless antibiotics, coffee, and a million cups of tea a day. Now they were whiter than I had ever known them. I showed them to everyone...even sent pics to penpals around the world! The pain lasted for about 5 days but it was well worth it!
I am off on my holidays in a few days time, which has been a long time coming. It's been booked for 14 months and now it's finally here! My family has decided that they are going to try and fix me up with a nice lady on holiday...who knows they might just do it! Im looking forward to swimming, something I haven't felt comfortable with doing in about 15 years. I hope I don't chicken out and end up giving in to my fears. When I come back I plan to complete a Diploma in Clinical Hypnotherapy and set up a practice. The Clinical part is an addition to Hypnotherapy experience I already have. When I come back from holiday I plan to make some changes to my life, hopefully for the better. Look out Holywood here I come!
]]>For the past few days, I have been unable to move my neck, had severe pain in my right shoulder, my arm has felt like 100 ton of weight on it! So I have been miserable, uncomfortable, and uncooperative. I have been popping ibuprofen like smarties and the pain just won't go away. Normally I can muster enough breath to expand my lungs so much that it shifts everything and then the pain goes away. No such luck this time. I think I have a lot of muck in my chest and I'm only able to open my lungs a little bit. I have epiodes like this every so often. It's like getting a bad form of sciatica. I don't know if I should sit down, stand up, lay down or just chop myself in half. It's like having an itch that you just ca'nt scratch!!
So whereas I should be out in 80 degree heat trying to get something of a tan, I am walking round like a bear with a sore head. I seem to have confused a few people over my last posting 'Final Thought'. A lot of people thought that was the end of my diary. I can exclusively reveal it's not!! I was quite pleased. I did a search on the internet and my blog came in second on search results on AOL/Google. I just did a search on my condition and there it popped up! I wonder if I could type in 'soul mate' and mine would show up in the results. I guess with feeling under the weather I have been feeling a bit retro lately. I'm having feelings of 'why haven't I got a girlfriend', 'what am I going to do about it'. I was quite happy being on my own, in my own space up until yesterday!! But then I sat and thought, you haven't dated for at least a couple of years and your 34 now, time is ticking away, you don't really want to be on your own forever!! I don't know about you but I must have profiles posted on a zillion dating sites on the internet. I thought It would be a good way of getting to know someone gradually and then when comfortable move on to meeting them in person, with all the I like this, I have this, out of the way. On some sites I have had maybe 45 emails a month and on others 1! The problem I find is that the people that reply are too old for my liking, are Mrs. Nigeria telling me she will split $25,000,000 with me if I help her move money, or I write to a couple and they are not a member so they can't read my reply! A couple of sites I have paid for trial membership, or a monthly plan, but guess what, when I'm paying to be able to read all emails and reply to them, I get no mail! As soon as my membership expires, the mail floods in!! I wonder why that is....hmmmm!!!
As a web designer, I have often thought about starting a dating website for people that have some kind of health problems and are a little uneasy about that and would like to meet like minded people, but only charge a once in a lifetime fee of say $5/$5. Trouble is I couldn't come up with a good enough name, and would it really be appreciated and used? What do YOU think? Is it a good idea? Answers on a postcard please!
Well that is all for today. My chair is not so good when my back hurts and it just aggrevates my back, so I will say bye for now, look out for the next post!
]]>I have read many entries to other people's diaries and as bad as my life has been, I feel that the old addage rings true. "There's always someone worse off." I consider myself lucky. To everyone that has taken the time to read my diary, I thank you. Remember life is what you make it, you play with the cards you are dealt and you try and make the best hand out of it. If you can smile while everyone around you is losing their head, your doing alright. Be lucky!
]]>Over the past 5 years I have been acting as a 'carer' for my mum. She suffered a stroke, which she recovered from quite well, but has been left with a short term memory problem. So I look after her making sure gas rings are off, taps are not left running, deal with her letters and finances and generally make sure she is safe and okay. I visit her every day and we chat and sort out daily difficulties. She gave so much of her life and now its my turn to take the time to make sure she is okay. We are very close. She is my best friend as I am hers. Even though I am 34 she still sees me as her little baby. Well don't all mothers! She still worries about my health and makes sure that I am okay.
Life can be cruel.
I went to the dentist this week on Tuesday for a normal checkup. Expecting a clean and polish I left with a very bitter taste in my mouth and a heavy feeling in my heart. The dentist told me that she wanted a second opinion from another dentist, which she called in and confirmed her thoughts. It seems that in my palet I have something which she called 'white spots'. "I want you to go to an oral surgeon. I think you may have cancerous tissue in your mouth. I think he will do a biopsy to check."
Well knock me back with a brick wall!! I only wanted a polish!! It made me recall a conversation I had with myself one night, when your laying in bed and things are running through your head, that I have had something wrong with my heart, my spine, my head with the breakdown I had...all that's left is cancer Lee. Well it just goes to show, be careful what you 'wish' for! It's not confirmed yet. I'm still waiting for the appointment. I expect I will deal with it as I have all things, one day at a time.
I have a holiday to look forward to and that's what I'm concentrating on. I feel sure that should I get bad news, there will be someone who will come along and save me once more. Should the worse happen, there will only be one regret in my life, that I am not married and do not have children. The rest of my life I am content with and have accepted as a natural life path and 'cest la vie'. When my time is up, be it 5 months or 25 years, I will go contented, but still broken hearted.
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I have always had that problem, that too look at me you wouldn't know I had any health problems, not unless you looked at my back or chest closely. But I had years of self confidence issues, paranoia about my scars and rib hump, that it were stored in my brain as fact. I have had further two small operations from 21 to 23. One to remove six ribs for cosmetic reasons to allow them to grow back into a normal shape. That did not work. I also had an operation to remove the metal clips from my chest that were in place since 1976 and were sticking out of my chest like gold nuggets trying to break out of my skin. Again for cosmetic reasons. Another relationship ended and I spent many night pondering on the entirety of my life, looking at myself in the mirror and I was disgusted with me. I even thought I was being punished for something to have to have to go through all these things. I sank into a place where only the Devil enjoyed. I was a good actor. I could disguise my deepening mood at work and at home. One dark day I had severe thoughts of killing myself. It was the right thing to do. I wasn't ever going to be married or have children, which is something I so very much wanted. After all, who is going to want me? I would always be unable to enjoy swimming or walk around feeling the breeze against my skin. My life was one of pain, broken hearts, in more ways than one, and dissapointment.
By the time I reached 24, I was at my lowest ever. One day seemed a good day to die. I took lots of pills, two bottles of night nurse (don't ask me why!) and went to bed. For god's sake, I woke up in the morning!! I took half a pharmacy. I should be dead! I had no bad head, no bad stomach, nothing!! So of coure I felt worse. I couldn't even accomplish that. I tried again. This time a sure fire way. I took a knife and slashed into my artery where the dip in your elbow is. I laid there on the bed, blood flowing. It wouldn't be long now. Then someone walked into my house and found me. I told them I had had an accident. They called an ambulance and I was sticthed up. Asked a few 'suicide' questions, fooled the doctor and came back home, in quite bad pain. I could hide the dressing, my arms were never on display anyway.
A week or so later I just packed a few things, left a note to my mum saying I was going away to kill myself and left. It was strange that day. I wasn't me. I was someone else. I felt as if I was being led by someone. I caught a flight to Spain and left the country. Booked into a hotel and found the biggest knife I could. I was going to slash my wrists and jump off the balcony. Two hits are better than one. I decided I would have one last day on earth, have a drink, explore the town a bit. That night in a bar I met a young woman who it turns out was working with my old best friend from first and middle school. I sat for ages talking to her, asking about him and his family and sharing stories from the old home town. We danced and even had a little kiss or two! I felt free and I felt detached from the world. If someone had come up to me that night and offered me drugs, i would of taken them, even though I have never ever and still to this day not touched any kind of drug. Or if a street merchant had asked me to have my picture taken with a tarantula or a cobra, I would of done it! I don't remember much except arriving back in the UK, having been away for over 2 weeks.
I was met by the police as the plane landed. They had been looking for me. The Spanish police had been involved and here I was. I was taken to see my GP and they wanted to take me into the hospital. I begged my mum not to let them. I had been running away from hospitals all my life. It was agreed that i would see a doctor at home 3 times a week to start with and I was prescribed the new wonder drug of the day. Prozac. I sat legs under my chin for days, weeks, just crying and crying. I had a wondeful doctor. I say he reprogrammed me. My mentality today is so different from my previous years. I am a new man. I'm sure in my darkest hours the angel of death was with me waiting to take my soul, but as before in all the days I needed someone to see me through, there was this old friend of a friend, there to help me. Amazing.
I was in 2 weeks and still no operation! I had test after test, lung function after lung function test. This wasn't normal. I would under normal circumstances have had my operation and been home by now! A doctor came to see me to say that there was to be another surgeons meeting the next day and they were going to discuss my operation. The problem seemed to be the complexity of my condition. More tests followed. The Queen was due to officially open the new wing of the hospital where my ward was. It was decided that as I had been kept waiting, I would be the one that she was presented to on my ward and I would get to meet her and have a few words. Which was a nice bonus.
Then on Sunday afternoon, Mr. Lincoln, my surgeon, who I know looked in with admiration rather than fright came to see me in the TV room. He explained that the operation was going to be dangerous, because of the complexity of the first operation, the work they did, then the level of scar tissue and the fact that they had never replaced a pulmonary valve twice on anyone with my particular complaint. So he said that the surgeons were split and it was decided that it was to be my decision to have the operation or not. I was to think about it and let them know. I had to consider the quality of life if I did not have it and the risks if I did. It was a hard decision to make. The first time I would ever have to sign the consent forms myself. I decided to have the operation.
The day of my operation was the day I was due to meet the Queen! So I missed out on that. Oh well it wasn't to be. I was slightly scared, the risks were explained and I really wasn't sure if I would be waking up later. I asked my mum not to come on the day of the operation. I wanted to be alone in thought. I remember singing to myself a few lines from a song "don't say a prayer for me now, save it for the morning after". I was wheeled down to the operating theatre, watching the ceiling lights whiz by one after another and wondered was this the last thing I was going to see. I remember going into the room and having the gas and injection and counting 10,9,8,7......I think I had an NDE (near death experience). I can remember being surrounded by such bright light and a really warm feeling, seeing silhouettes of people that I somehow knew and then I was suddenly awake and my mum was over my bed breathing cigarette breath all over me!
I was in intensive care. I didnt have a clue what time it was or what day it was. I still had the tube in down my throat and I was as dry as could be. I drifted off to sleep again. When I woke the tube had gone and I was allowed some water on those little lollipop stick sponge things. Of course I was greedy and wanted lots of water. I was sick. The nurse wasn't impressed. I noticed that I was sitting up in bed, had a dressing down the length of my chest. It was only then that I realized I was alive! There was no pain at all. It was just like I was sitting up in bed relaxing. I had the tubes removed from my stomach which was draining blood away. I thought it was too soon myself, but they must know what they were doing.
Shortly after I could feel my heart racing and I was breathing in and out very fast at the same time. An oxygen mask was placed over my face and nurses were around me. One asked, "Is it your asthma?" Excuse me love, but I am breathing in and out in one breath and you want me to answer questions!!! I shook my head no. It was getting worse. I was sweating. I could see my heart rate going up and up, 118, 121, 136. If they didn't do something I would have a heart attack just watching the screen! A doctor came and then a portable x-ray machine. I was x-rayed and then an anesthetist came, opened a tray and cut into my side, pushed in a tube and mmmmmmmmm heaven, I felt so much better. My heart rate dropped and my breathing slowed. I was right, they did take the tubes out too quick! I had blood in the lungs.
Because of this little episode I was in intensive care for 4 days rather than the 3 as planned. I had made friends with an elderly gentleman called Peter on my ward prior to having my operation. He had had one of his lungs taken away. He was very concerned for me, obviously hearing the doctors come to me to discuss my case, as was his middle aged nephew. In fact the nephew came down and managed to see me for two minutes in intensive care because they were worried what had happened to me! Just before I was to leave intensive care and still a bit sleepy several figures appeared at the entrance of the bay, standing about 10 feet away from me was the Queen and her entourage! She wore a beautiful blue dress coat, blue hat and a broach. She waved at me and smiled while doctors explained what I had had done. I managed to wave back slightly and crack a smile. I was happy that I had seen her afterall!
PART 2.
Back on the ward was when the pain set in, not from the operation but from my new friend Peter. He made me laugh so much with his antics, that my chest hurt. Laughing makes your chest expand and I was laughing so hard that I had to hold a pillow to my chest. Poor Peter, he could hardly breathe as it was, he was wheezing as he was laughing. He had a way of finding something hilarious about each nurse or one of the ladies that came round with the cups of tea and biscuits. He was a bit of a piss taker, but it was all good clean fun. Then something happened that I never counted on. I was going through the menopause!! I suddenly started having the most awful hot flushes and sweats. I was burning up and the sweat was ringing from me. Apparently this is quite normal when the heart is played with. They lasted for hours ad hours at a time, I had to change my bed clothes several times a day and night.
A couple of days after being on the ward, I started to notice that I was feeling increasingly cold and a bit light headed. I was put on 15 minute observations. I had a blood test and it was found that i was very low on zinc. I was given two bags of blood by transfusion and confined to bed while I was receiving it. Which didn't go down well with me! I had my dresing removed and a much lighter one put in its place. I noticed a blue wire sticking out of my scar at the top and the same at the bottom of the scar, only this one had a little bead atached to it. I asked a nurse and she said it was internal stitches. I did notice I did not have any external stitches which I thought was really great. Me being silly though, they stitched me up from the inside!
When it was the day for me to go home a nurse came and said that I would have to have my stitches out. What? I havent got any. Then she explained. The blue wire was in fact stitching and the beads were to help pull them out, but since the bead had fallen off the top they would have to pull it all from the bottom. I told them its okay, I'LL GO HOME WITH THEM IN. I was more frightened of having the stitches out than the operation! Well, what an experience, acting like a baby rather than a near 21 year old I protested! As the nurse pulled this wire my whole chest crumpled as if it was like a piece of paper that had been screwed up in your hand. I was sure my chest was going to burst open. Of course it neve didr. It is something I don't look forward to in the future. It was more discomfort than pain. I don't wish to frighten anyone reading this. It just was the weirdest thing I had ever seen!
It was fast approaching my 21st Party and my Mum had arranged a very special party with all my work friends, friends and family. My dad helped to oragnise it in part, his birthday is the day before mine so he was having a joint thing with me. Although they had been divorced for many years they were still friendly and sociable. My life with my health and my home life with my dad who was addicted to gambling, is an entirely seperate story and worth a blog all on its own! We had the hall at our local private members club and it was packed. I had my favourite live band at the time, they were a 50's and 60's band and were cockney through and through, very funny and entertaining.
Unknown to me I had a special surprise waiting. I had seen a young 18 year old singer at another club. It was like love or lust at first sight! My mum had booked her and she popped out of a giant cardboard cake! She sat me on a chair in the middle of the dance floor and sang a couple of songs to me, verging on a lap dance! It was great, one of the greatest moments in my life. She gave me signed posters and a copy of a single that she had just released. Everyone was saying how well I looked and how much energy I had. I sucked up every minute of it. We had a party back at home after that had about another 40 guests, which was tight as we only had a two bedroom house. It went on all night. I even had a 'romantic' present that night, someone who I thought was out of my league...well I woke up with her the next morning. What a party, what great presents I had. I loved life and loved being alive.
]]>I had improved enough to be able to walk up and down the corridors, up some stairs and get myself in and out of bed. My journey home was a bit rough, having to travel on the London Underground (the Tube). I was rocked about, shook and swayed, as the train ran across the tracks. My bed had been moved downstairs to make it easier for me. I was still pretty weak and sore, so a nap here and there was in order throughout the day. I had several visits from Jenny over the months and we got along fine. Just as quickly as she had entered my life, she was gone. I suspect that she had found herself a boyfriend nearer her age, with a bit more street credentials. I was still only 15 and she was 19. The age gap at that point in her life was significant and besides I was 'out of action' for a couple of months. I don't blame her, in fact I thank her. Sometimes I wonder if she was real. Maybe she was an angel sent to help me through some tough times. Whatever she was, she is and alway wills be a lasting cherished memory.
I had to have a home teacher to help me prepare for my exams. I couldn't go to school for the last six months of my school life, partly because I was still in such discomfort and partly because the school was nervous about having me on the premises! I took some exams at home and some I managed to do at school. Considering I missed pretty much the first 6 years of school with my heart and most of my final year with my back, I think I did well. I passed 5 O Levels in English, Math, Geography, French and History. By the time I left school at 16 I had more spare parts in me than the Six Million Dollar Man! A Dacron Patch between the two chambers of the heart, a false pulmonary valve and a Harrington Rod attached to my spine. I was quite fortunate that I was able to get a job immediately after leaving school for the Local Council (City Hall). I was in tip top health now, moving into the adult world. I mixed with my colleagues, went drinking with them, attended dinner parties, disco's and family functions. I found myself a nice girlfriend, was working and had a great set of friends. So everything was great, wasn't it?
Well it should be. Trouble was, I was now interested in women in a more adult way. I had my boyhood experience and really just laid back and thought of England at the time, but now I was more mature and more active sexually. And that meant taking my clothes off in front of someone I cared for a lot and possibly was in love with. It took me a long time, in a roundabout, dropping hints in a kind of way to explain my medical conditions to girls that I went out with. I didn't want them to think me a freak, or to run a mile. I was always making excuses why I was it a sweatshirt when the sun was blazing. My girlfriend bought me T Shirts and short sleeved shirts to wear. I smiled and said they were lovely. They only got worn when she came round. This particular girlfriend was quite sweet and understanding. My mum explained my situation and I remember one particular day when we were alone in my bedroom, kissing and cuddling, and she undid my shirt. I was horrified, scared, I was waiting for her to look at my chest and scream or run off and be sick or do something drastic! I know it's just a scar and as I have mentioned earlier, my left breast bone is slightly more protruding than my right one due to the operation, but to people who have never experienced that, or have only had boyfriends who have had a normal physique, it can be quite daunting. Anyway, to my surprise, she kissed my scar and stroked my chest. We talked about my condition for hours, she had a little cry and I was never embarrassed in front of her again.
The trouble is, finding a girlfriend was never the problem for me, I was never shy about approaching them or showing them affection. I was just always very scared of that inevitable time when the relationship would move on and I would have to show my body off again. The thing I like most is a nice cuddle when a girl puts her arms around you. I would always wait for the "whats that" when their hand would find my raised ribs on my back. Whenever a relationship finished, I would always add to the list of reasons my back and chest as one of the reasons why. After all, when there are fitter and more normally shaped men out there, surely I'm just a passing ship in the night.
It was fast approaching my 21st birthday. I was still full of energy, life and expectation. Then I started to notice a decline in my energy levels. At first I thought I was doing too much. Out partying 'til 2am, working a 12 hour day, but it was more than that. I was coming in from work and going to sleep straight away. My breathing was getting worse too. There was more to it than just overdoing it.
]]>So there I am in the hospital gown that is no thicker than a paper napkin, the rear all exposed. I have never been able to tie things behind my back, so my 15 year old butt is on display and the crown jewels subject to x-ray vision! I'm told to lay on the bed. It was quite high so I steadied myself with one hand while trying to keep the gown form turning into superman's cape. The doctor who is a Houseman is going to oversee the x-ray, leather straps are placed over my head and the doctor takes my feet and pulls me!! Whoa!!! Hold on. I'm used to chest against the plate, breathe in, hold, next! Anyway this form of medical torture is repeated four or five times and the reason for doing this is to see how flexible my spine is. When I'm pulled, effectively straightening me up, they x-ray it and measure it against 'normal' x-rays of my spine. Needless to say I never got into bondage in my later life..why should I. I did that in my teens!
Skip forward a few months. I have to admit, I abandoned the plastic body brace after a couple of weeks, wearing that 23 hours a day, was agony. I couldn't bend, going to the toilet was difficult, and I looked like Mr. Potato Head on steroids! My next appointment confirmed that there was no decline and I was now at 36 percent curvature and there seemed to be no let up. The Torture chamber had revealed that my spine was flexible enough to go ahead and have an operation to correct the problem. I was to have a scoliosis Fusion. Sounds all fine and dandy. I'd be in the hospital for around three weeks and I could have it done at my local orthopedic hospital, which was a centre of excellence.
My admission date comes. Into hospital I go. I couldn't really remember pain and discomfort from my heart operation when I was six, so to say I was apprehensive was about right. A doctor came and there was a change of plan. Because of the complexity of my heart condition, it wasn't safe to operate on me at that hospital. I had to go to another hospital in the centre of London, 20 minutes away from my Heart Hospital. In case of complications they could send a team and advise on my treatment. I was taken by ambulance, with blue lights flashing to the new hospital. I think it was a treat for me to have the lights going or the ambulance driver was on a promise later with his wife because it wasn't an emergency!
I had settled into my new ward. It was a very long ward, with younger children at one end about a mile down the corridor and I was at the other end. There were six beds. I had one and one other was occupied by a girl called Jenny. In about an hour a young boy joined us but he was in for day surgery and would be gone in the morning. My bed was right next to Jenny's. She was 19, blonde, and the most beautiful girl I had ever seen. I was in awe of her. I was 15 and love struck. We became friends very quickly. We had the run of the place, well at our end anyway. We only saw a nurse for checking our blood pressure and to say, "see ya tomorrow".
Jenny was scheduled for an operation on her foot in a couple of days, as I was for my operation. We chatted and laughed and there was an instant bond between us. She said I was very sweet, had a cheeky smile and I spoke to her with my eyes. Oh really! I often wondered as I got older and wiser, did she mean I was undressing her with my eyes! I wouldn't have far to go though as she stayed in the shortest of nighties all day and night. We were inseparable. Our parents, noticed how close we were and how we were laughing about stuff that they didn't understand. When my mum came to visit me she visited Jenny too and vice versa. The night before our operations Jenny made a man of me. It was thrilling, daunting, scary. We could of been caught in the bathroom at anytime. I was ready for anything now. The morning came and Jenny went to theatre first, she would be in a few days further. We swapped phone numbers, addresses, blood groups, date of birth, shoes sizes, everything! I was praying that when I came back from intensive care, Jenny would still be there.
I woke up and the first thing I noticed was the pain. The pain, the pain. What had they done to me? I was flat on my back, tubes of all sizes sticking out of every orifice. The next thing I noticed was that I felt 10 feet tall. A nurse hovered over me, injected me and I was asleep again in seconds. I think I was asleep for a day. When I woke again, I still had the tube down my throat, helping me to breathe. I pulled at it furiously. They wouldn't take it out just yet. Then came the pain again. I was under a regime of being turned on my side every two hours. Nurses all rolled me over. That hurt in itself.
I have never been a sleep on your back person, maybe due to my back problem, so it was a relief to move, but within 5 minutes I had wanted to be turned again and then turned back again. I just couldn't get conmfortable or any relief from the pain. A doctor came with a tape measure. I thought it was the undertaker come to measure me up for my coffin! I got a bit restless at this point. What I hadn't noticed was that I hadn't spoken since being awake. The tube was gone that was breathing for me, but there was no sound from my mouth. Also my left side just didn't feel there. I rolled my eyes to my left hand and tried to lift my heavily bandaged hand with tubes coming out of it like strands of spaghetti, but it just wouldn't move. Tears trickled down my face and my mum comforted me as best she could. I drifted in and out for what seemed like eternity. When I woke again, there seemed to be like half a dozen doctors around me. I could just make out they were talking about sending me to intensive care again. Heart monitors were on me now. I had an oxygen mask on too. My mum whispered to me that the doctors were there from The Brompton Hospital (my heart hospital) and not to worry. I could see in her eyes that worry had kept sleep from her for days.
The actual operation involved taking bone from my right hip, inserting a titanium rod the length of my spine, drilling holes into the spine attaching wires through the holes and then pulling them and the spine to the rod and then fixing with the bone from my hips. Thus to straighten my spine as best as possible. I was like a walk in wardrobe. Unzip me from the chest and exit via the back! Another scar to worry about. Days passed and I was moved back down to the old part of the ward.
My eyes scanned for Jenny. She was gone. There was a card for me she had left, with a nice letter inside. And unbeknown to me a little present which the ward sister found in my locker. A single condom. My mum had to answer questions about her little boys sexual activity. It's funny now and was a good joke, but I was embarrassed as hell and didn't know where to put my face. I dismissed it with a cry of pain and moans and groans. My next phase was to go from eating and drinking flat on my back, through a straw..try it sometime..but have the indigestion pills ready to be able to sit up under a heap of pillows. The last of the draining tubes had gone. It was to be my first time upright. I had to learn how to roll over using my hands and elbow and push myself up in a sideways movement while keeping my back straight. Accomplished that, with help, as my little frame had gotten even thinner due to lack of eating properly and being on liquid feeds for ages. As reached a sitting on the edge of the bed position, I had a head rush, I saw stars and was dizzy as hell. That was that for today. The next few days that was the routine, sit up, get less dizzy, lay down again.
One particular day I was to be in Star Trek, to go where no man had gone before, explore strange new worlds. I was to actually sit up and then stand up. It was the strangest feeling. I felt as if I had a plank of wood stuck to my back. I felt very tense and yet numb and solid weight at the same time. I was up now, get me my horse, I'm riding out of town! I was allowed to take a couple of small steps and that was it. I wanted to go to the toilet myself, walk around, find the exit!! I was out of bed over the next couple of days and I could take more and more steps. I had convinced them that I was quite safe to go to the toilet myself and then come back. So I was in and out of bed as often as I could, using the excuse to go to the toilet. My left arm and hand was still very weak and numb, but they said it would all come back soon. I did look like hell. I still had a drip I had to drag around and hadn't brushed my hair for what seemed like weeks, bed head..I had terminal bed head! I had a visitor. I heard crutches coming down the corridor and then a head pop round the door to my room, followed by a leg in plaster and then...Jenny.
She made some remark about me being lazy and to get out of bed. I couldn't move. All I could think of was what the nurse had found! She sat down and held my hand, my left hand and just smiled at me. I remember a tear running down my face and I turned away slightly. In that touch and smile, I could tell she knew all I had gone through. She came over and kissed me ever so softly on my quivvering lip. We just sat smiiing at each other for what must of been an hour, her gently stroking my hand.......
]]>I was told I had Scoliosis. This was a new thing to me. By now I was pretty well up on a variety of conditions, but I had never heard of Scoliosis. The consultant explained that I had a curvature of the spine. My particular one was called idiopathic. Which in the Queens English means they dont know why it happens! Now following suit my Scoliosis was not run of the mill. Apparently a curvature on the right side is more common in girls. Guess which side mine was on? I was to be monitored for the next year to see how it went.
Now as a 14 year old I should of been in my prime, enjoying life, strutting my stuff and concentrating on gaining the affections of some pretty young girl. Instead I was concentrating on this new condition in my life. I never noticed it at first but I had started to walk slightly bent over. I'm sure my family noticed it but never said anything. Then one day while having a shower, I was washing my back and I noticed that my ribs were sticking out more on one side than the other. I began to stand flat against a wall and feel how far away my left side was away from the wall. Soon I was able to stand with my right side against the wall and was able to place my left hand right through a gap to my right side.
Upon my next appointment, there were more x-rays and the curve was measured. It had increased. But I was told not to worry as they were going to fit me with a special plaster cast support that would hopefully straighten me up. I arrived for this plaster cast fitting. Plaster of paris was moulded all around my waist back and over my hips and allowed to dry. When it was all done, little me looked like an American Football player. I had what appeared to be quarterback shoulders, with my little head sticking out. That was Friday. Weighing just over four and a half stone and five feet seven, this thing weighed a ton!
Come Monday it was back to school and I could feel eyes on me, sniggers as I walked down the corridor. Because it was so heavy, I walked with a stoop even more. I got new names, Frankenstein, and Quasie Modo. I think the latter name hurt the most. Still, I was only to have it on for six weeks and then I would be starightened up and that would be it. There was a mixed reaction at school. Some of the kids turned into super bully, while others were fascinated by what was under my shirt. I remember one ocassion when a kid from a year above me thought he would be a show off and try and impress a group of girls nearby. He came up to me and started being rude and then came his pre rehearsed display of strength for the girls. Bang he punched me in the stomach. Now normally I probably would of dropped to my knees in severe pain and tears in my eyes. Except this time he hit about four inches of plaster. I stood still while he screamed in pain and ran off red faced. Being ill sometimes has it's compensations!
The time came to have the cast off. The results were in and there was no change. In fact the curve had got worse. Which I'm not surprised, carrying all that weight made me stoop and be bent over! So the next step was to be put in a plastic body brace that would keep me upright for 23 hours a day! So they try keeping you bent over for 6 weeks and now they want to try keeping me as stiff as a board! Part of this phase of treatement was to monitor me more closely and to have some different x-rays called Houseman Pulls.
]]>I sailed through first school and middle school. I had girlfriends, went swimming and still had the odd chest infection and bout of flu, but I was so much better. People said I had more energy than my two brothers put together. Well I had a lot of catching up to do! I still had some shading around my eyes and sometimes you would swear I was wearing lipstick. It was my circulation and my heart problem, but try explaining that to a kid! Or an adult who looks at you sideways! I was doing okay. I started senior school at the age of 12. I was still a naive lad. I hadn't yet started to worry about my body or got well into looking cool for girls, so I really did not have any hang ups about getting changed in a changing room with a room full of lads, or strutting around during swimming lessons with my class.
There were some more advanced boys than me and girls too. And this is where an alternative problem started - prejudice. I had a long scar all the way down my chest and the side of my chest where the heart is, slighlty stuck out further than the right, due to cutting open the sternum and having a Dacron patch and covering over the heart. Boys began to stare, girls began to stare. I was forever having to explain why I had a scar, how I got it, did it hurt, can they catch it and so on. Now people may not realize that it is common for people with heart conditions to also be much thinner than people of their age. I grew up thin. My doctors were always telling my mum (who had been divorced by now from my father and had to cope with me and my two brothers on her own) that they didn't want a strain on the heart so not to put too much weight on. Plus for some reason we are these people that could eat for their country and still not put a pound on! So if you can imagine I was this little thin lad, with a big scar and a miss shaped chest. I became the subject of school boy pranks, bullying, name calling and embarrassment.
As a teenager, these years mark your place in society. I had a good group of friends and I still managed to have girlfriends here and there. After all it was unlikely they were going to rip my top off at that age! Summers were and are the worst for me. While pubescent boys were strutting there growing muscles and manly chests along the streets and in the parks, I was always covered up in long sleeve shirts or sweatshirt. I was embarrassed to show my thin arms and even more embarrassed to show my chest. So in baking heat, I baked, while everyone basked in the sunshine.
I got excused from swimming and games. This meant no more changing room jibes or having to expose the freak that was me. At 14 we had a different kind of school medical, much more than a drop your trousers and cough! I was asked how long had I had a curved spine. Curved spine? What was she talking about? I have a heart condition. The Nurse kept telling me to bend over and she kept running her finger down my spine. A letter went home.
]]>The doctors explained that I had what was described as a congenital heart defect, which now a days they say is "what your born with" or its "hereditary". Well since no one in the family had a heart condition, my parents could not understand this. Later on in life, through hospital visits, we later learned that there was a group that was fighting a certain medical company, because all mothers that took this pill had suffered defects in their newborn. Today the case continues the world over. They have more money than this little group!
Anyway, the doctors explained that I had a large hole in both chambers of the heart and no pulmonary valve. The pulmonary valve is the one that pumps blood around the heart and away from the lungs. So I was very ill and they did not expect me to survive. Back in 1970 this was a very rare condition and no one in England had ever been operated on to fix this complaint. The first six years of my life I pretty much spent in hospital, with chest infections, pneumonia, whooping cough. You name it I got it. I had heart attack after heart attack. My eyes and mouth were always blue, my cheeks rosey red. The funny thing, when I was born they told my parents to expect a baby no more than 2lbs. I was well over 6 and the heaviest of my two brothers! I wasn't expected to live each time I went into hospital, but somehow I always came home...if only to return!
When I was six they decided that they really must try and operate on me. I was at my strongest I had been for months and it was now, or the end would come. They assembled a team. A Professor Joseph was my cardiologist and a M.r Chris Lincoln was to be the surgeon. I remember seeing him, as a six year old he looked like 10ft tall with big giant hands. I was scared of him. I heard them telling my mum about the risks and they said something like there was only a 5 percent chance I would survive the operation. I didn't take it in. I knew I was to have 'an operation' but never really knew the implications. It was great because I got lots of treats and my mum came in with a talking Noddy, the one where you pull a string at the back and he chats away. I loved it and it came to the theatre with me.
I survived! I had more colour, more energy, and I could breathe so much better. On day two they had me riding a little bike around the ward. It hurt like mad, but they said I must. I left hospital about 3 weeks after and my new life was ready to begin.....
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