Today I am off to London.
I have established that my style and approach to life is a cross between Bob Geldolf with the delivery of Gordon Ramsey. Passionate and too the point.
This blog contains some very deep emotional stuff that I have though long and hard about sharing, but as I approach the most important 7 weeks of my life I feel I want to share it.
On the train.
The first part of my train journey involves the local train wending its way through the Exe estuary to Exeter. I feel quite passionate about Britain Railways not from a nostalgic view point of being a second generation railwayman but from a perspective of the environmental benefits, after all the total time travelling from my house to Central London will today be less than 3 hours.
I am sitting opposite a bloke on the train who has either piles or has just been told that dream retirement posting is in fact Bazri and not Bali as his PA had written down the message incorrectly. He has not smiled since Exeter, where I got on. :)
Train journeys are good for thinking, I thought about things, my childhood in particular, I was the youngest of three, battypat is 15 years older than me, I think, my brother is 10. I am sure my mother lost the plot, she herself had a crap childhood coming from war torn Sheffield. I was the intelligent one from the Council estate who only survived getting beaten by the rough lads because I was good at sport and battypat looked out for me. I always remember being bullied at school by Stephen Brennan, one day his bullying went too far he was punching me I picked up a stick and whacked him with it; he went home crying ten minutes his mother was at my door my mum bless her asked me did I hit "Stephen" with a stick, "I replied no Mum, with my fist which mum slammed the door, and I sneaked off back to my bedroom smirking to myself. I was only 8 at the time but bullies never came near me again.
My mother regularly beat me as a child with what ever implement she could find I remember a wooden scholl sandal and at 14 she beat me with a metal tray in front my dad who did nothing. I still loved my parents, but I wonder if they loved me. My mother from an early age used to shout and scream at me, call me greedy, and words I never knew the meaning of, I do now and they were not very nice. I get the sense that I was not wanted, depised by her, I was lucky I had my sister around I think worse things would of happened.
The abhorence of cruelty to anything still exists into my adulthood as I try and prevent my son from performing " Billy the spider has 8 legs, 7 legs, 6 legs, etc with a real insect! You get the picture with that game. My children are not wrapped in cotton wool, but alternative forms of discipline which do not involve violence and abusive work.
It took the help of a therapist and lots of counselling to help me through 2 years ago. When I was 10- 16 I was not allowed to have friends around, I am trying to think whether I had any true friends apart from Stephen Lawry who has stuck by me for the last 30 years. I had difficulty making friendships, because I wanted more I wanted love, I wanted to BE held as child and told I would be safe, it never came. I would wake up and hug my pillow wanting the love and affection every child wanted, it never came.
This has caused me huge problems in early adulthood. I had an issue over relationships with women not believing that someone would love me. But that was then so I felt such joy this year when I had everything I wanted, alas a little more bodily than I really wanted the rest is history. Not cancer, where did that come from from in my wildest dreams cancer has come from no where.
My train journey gave me the opportunity to escape my 5 weeks of being cocoanut in my house and my World. It is a very scary experience.
I love looking out of the window imaging peoples lives and experiences, looking through their windows, gardens, towns and shops and trying to reflect on their day.
It is Reading. A guy just came and sat next to me and buggered off, result! There is a young babe sitting opposite, looks 23 ish off for an interview judging by her dress sense. She is reading my emails I have printed off I will let her, must be a quite interesting reading upside down. I feel like reaching across and say its ok "dear" in my best Michael Winner voice I have cancer!
I am dead nosy on trains and pubs and love people watching, have some stories to tell. I love recalling stories, great dinner guest even better host!
I have managed to make it into a taxi. I found Paddington scary, being virtually on my own for 6 weeks just walking through the station has made me nervous.
My day at Lambeth was good, I could see people hurting with me in their eyes, admiring my scars, for some reason, I suppose they did feel uncomfortable turning stories around and making them feel good. The games we play as adults to avoid hurting people.
The day went well, many thanks to Hillary Roberts to helping through it see you soon Lambeth.
Nigel x
Keep attacking!
PS: My new mooring can be seen 24 hours a day so you can see me in action! 2nd mooring from the left closet to the foreshore.
http://www.bbc.co.uk/devon/webcams/starcross_webcam.shtml
Wednesday, June 29, 2005
Tuesday, June 28, 2005
Day 38 - Return of the mask
One of the views from my window, the boat is called "My Queen" she is part of the Starcross ferry fleet and is a Dunkirk veteran. This was a summer sunrise looking towards Halsdon, Exmouth. This picture puts into context my later posting.day was extremely busy, but to do everything justice would be unreal. There were 2 significant events of the today I would like to ramble on through the Garden of Eden and talk about 2 forbidden fruits.
The forbidden fruits was one, the futile attempt to secure a mooring on the river exe, and two, radioation therapy prep.
I have ascertained that the banks of mud at low tide outside my window are all owned by the Earl of Devon from his rather large Castle just one mile away from my house in Powederham. The bottom-line is that a feudal Baron owns the river bed, yes our river bed, and to tie the boat on a mooring for 4 months would cost me nearly £350! You can imagine my disgust leaving the castle whistling the La Marseillaise and looking flat surface which to establish my portable gallows, come the glorious day! Now I have to question how the hell does this bloke, who up until 1997 had the right to sit in the House of Lords have the right to own a river bed! I am sure someone will tell me, but surely in the 21st century we have done away with feudal customs! Like trial without jury, locking people up without trial, torturing prisoners of war, and deporting people to almost certain execution. Sorry well had to be said.
I would like to set the scene about my house, today's picture is the view from my balcony which well help in my ramble, and this is a piece of writing I did last night in an email to a friend to capture the thunder storm.
It is1amm and I am sitting out on my balcony listening to the clanking of metal rigging, avocets and curlews. Its very warm tonight even with the river breeze, I live about 35 metres from the banks of the river Exe and the outside street light was just gone out and it was pitch black. The river is not giving any light and with the evocative sounds it is very spooky.
In just one hour things have changed, sea gulls are coming in land, which is rare for them this time of night do they detect a storm, they have better radar than us. The curlews have gone quiet and the tide is ebbing outwards this is nature at its best. I love living by the sea, as you know from my pictures it gives me energy and strength and also a sense of purpose in life. As the tide comes in and out I know that life will move on regardless of what happens. The church clock has struck one; just think of those people stuck in an inner London suburb with no hope. I do think I am lucky being alive.
The 2ndhugee event after I had calmed down from the 1st and been evicted with placards from the Castle was my appointments at the radiation mask setting. As I earlier posted in my battle. The mask is made of semi clear thermoplastic which gives you protection from the radiation rays, but also clamps you into position on the radiation machine. Today was a simulator, the purpose being lying me down on a hard flat bed, which for some reason reminded me of execution beds they strap death row people on in the States.
The bottom-line is you are strapped in, bolted down unable to move great for bondage role play, crap for the nerves and senses. The plastic is so thick, like the old fashioned NHS glasses, you cannot see out of it there you are bolted down rigid. The machine directs a beam of light across your face and the nurse retreats to a safe room behind glass you would see at a nuclear power station. You are all alone, strapped down and your life flashes before you/The aim is to plot the rays on the real machine on my mask whilst I am bolted to the bed, no make that a table, the term table too grand. The machine moves around your body and head and the nurse plots the treatment areas.
The thoughts that went through my mind were not of trivia but a realisation this is serious, the work that woman is doing in plotting my treatment is trying to save my life. I am in her hands. I found it hard the "assume the position" lying on the bench, as my neck had to be stretched back and arched. You see nothing through the Perspex just a blur a bit like my life. I lay down recalled the statistics, my chances of living 5 years are 50/50, just 50% ok for my age group a little higher, I recounted the dull argument why me and thought would I be here in 1, 3 or 10 years.
The end result was a serious of colour photographs of my head, my brain, and my neck which were fascinating to see at the end. The nurses love me asking all these questions and next week I will get you a picture of the mask I promise. I have to be honest I think the comment the lump was big and the area is big, was proved right today. 38 days I started my fight, today I saw how big it was, awesome!
Its difficult to be rational about cancer, something you know may kill you soon. All I know is that I am going to fight bloody hard to stay alive and annoy you all even more. I will find a release for my anger, and turn it into positive love for you all. I ask people to forgive my rantings, irrational views, comments but when preparing for the firing squad and hoping their guns will jam is not a position I chose to be in 6 weeks ago. But please I beg do not be rational with me, it will not work, I do not see things in black and white, please never benchmark against the norm, because I never will be and certainly am not now.
I better go tonight, there have been a few tears writing this one, not many but enough to start the grieving process. I have a huge day tomorrow I am off to Lambeth, it will not be a long day and I will taxi everywhere to keep safe. I have missed my Lambeth mates, and tomorrow I am sure will not only be a good working day but a hugely emotional day(sorry more tears) I suppose I am allowed to cry tomorrow because I know there are plenty there who will.
Night, keep attacking! X
PS Pain factor 2 out of ten from surgery, which is a sound improvement
Monday, June 27, 2005
Day 37 - Hot man Hot!
River Exe 28/2/2006, looking towards Exmouth and Dawlish Warren taken from Cockwood at sunrise. The ship is a coaster that ran aground during the Second World War and stayed put, she makes a great backdrop.
Wow what a scorcher today was!
Today was a good apart from the lady in 91 Beacon lane who came marching over to me and screamed and swore at me for leaving her gate open whilst I was delivering, you can imagine my response a polite sorry, when she riled on I joined her in the rant!
Disciplined, relaxed moi, no chance, I am an angry volcano with naff all to lose so be-warned!
Well today was relaxation class and tonight an aromotherapy massage, I love the smell, the pampering and of course the feeling of wow afterwards just right for a warm summers evening. The sea breeze is very welcome this time of year something which I never mention.
The one thought of today was at the FORCE centre, an old boy would say late 70s struggled in on sticks flopped down in the big brother chair that I love. The old brave boy looked at me and said "I have one of these coming from Hospice care and you have to pay for delivery/collection on delivery, for obvious reasons" There was a stunned silence, what can you say to that when they deliver the chair they collect the rent now because a dead man cannot pay a bill!
I would most proberly say that has been the most moving experience I have ever had in my life, that brave guy knowing he was dying, knowing he was paying for the collection of his chair as he will not be around to settle the invoice. It brings it home to you that we do not have an infinite amount of time on this earth and some of us more finite than others.
Tomorrow is a massive day in my little World, Emma and more aromotherapy at the FORCE centre, followed by my pre ward visit for Chemo to Yeo ward, followed by the setting and positioning with that horrid mask on which sees me strapped in so they can position and mark me when they fire the radiotherapy bullets next week. I think tomorrow will be a defining day in my life in how I deal with the next 7 weeks, watch this space tomorrow.
Now I have a lot of stick over the purchase of my 14 foot inflatable, oh err Mrs, however I have bought it will be securing a mooring tomorrow and collecting on Saturday should Uncle Ron be able to refit the tow hook. However, Jo the queen will not be attending the launch on Sunday, but I do know a few queens but depends whether they will have finished choosing the wallpaper!
On that crap joke must go! Keep attacking Nigel !
Admiral Nelson
Further to reports on this blog as to my competence "nautical" I would have you know that I have my RYA certificate and a 25 yard swimming certificate, I think, well the one where you ahd to blow up your PJs!
More importantly a mobile phone and bloody good life jacket.
I am fortunate to have a 40 hp motor on the back, sailing is far too hard these days and the river exe is far too cold!
Anchors away and turf lock here we come!
More importantly a mobile phone and bloody good life jacket.
I am fortunate to have a 40 hp motor on the back, sailing is far too hard these days and the river exe is far too cold!
Anchors away and turf lock here we come!
Sunday, June 26, 2005
Day 36 - Aldaniti
Well Sunday was more fun.
Saturday was a morose day. The pain in my shoulder and from my left neck to behind my ear was quite painful.
I awoke late and O decided I needed a day out, went to Otterton a very quaint part of Devon enroute to Ladram Bay, another quaint beach full of pebbles but surrounded by great red Devon sandstone cliffs. We only stayed an hour because I had a meeting to attend, but the day felt normal and purposeful and took my mind off things.
I defiantly have medical withdrawal symptoms. I have not been to the hospital of over 2 weeks and it is clear that this caused me to be anxious over the weekend. I had all that involvement and now have nothing until next week so combined with a sense of anxiety of the forthcoming radiation therapy I went west and lost the plot with my emotions.
Anyway I have decided to set myself three "Aldaniti" targets each year for those who not know the full story, Aldaniti was the horse Bob Champion rode to victory to win the grand national after being diagnoised with cancer, Bob set himself the challenge of winning the Grand National.
For those who know me I have one already lined up, maybe the Great West Run any suggestions for the third.
Oh by the way wrote a letter to the local newspaper tonight after a local idiot who has nothing better to do than to write to the express and echo telling us to ban smoking from a public place was an infringement to civil liberties, what a prat!
Good night! Keep attacking, oh I have bought a boat! Forgot to tell you :)
Saturday was a morose day. The pain in my shoulder and from my left neck to behind my ear was quite painful.
I awoke late and O decided I needed a day out, went to Otterton a very quaint part of Devon enroute to Ladram Bay, another quaint beach full of pebbles but surrounded by great red Devon sandstone cliffs. We only stayed an hour because I had a meeting to attend, but the day felt normal and purposeful and took my mind off things.
I defiantly have medical withdrawal symptoms. I have not been to the hospital of over 2 weeks and it is clear that this caused me to be anxious over the weekend. I had all that involvement and now have nothing until next week so combined with a sense of anxiety of the forthcoming radiation therapy I went west and lost the plot with my emotions.
Anyway I have decided to set myself three "Aldaniti" targets each year for those who not know the full story, Aldaniti was the horse Bob Champion rode to victory to win the grand national after being diagnoised with cancer, Bob set himself the challenge of winning the Grand National.
For those who know me I have one already lined up, maybe the Great West Run any suggestions for the third.
Oh by the way wrote a letter to the local newspaper tonight after a local idiot who has nothing better to do than to write to the express and echo telling us to ban smoking from a public place was an infringement to civil liberties, what a prat!
Good night! Keep attacking, oh I have bought a boat! Forgot to tell you :)
Saturday, June 25, 2005
Day 35 - Nothing happened
Nothing happened today in the big brother house!
Got up at 6pm watch the tennis went to bed in pain!
Got up at 6pm watch the tennis went to bed in pain!
Friday, June 24, 2005
Day 34 - Happy Birthday
Sennen Cove 31/10/04 this is called "Indian Autumn" look how many things are going on in it, the ship, bloke in the sea, the patterns on the beach, I love this picture, alas I was there when someone broke my heart. (See later post)
A would like to start off this blog by wishing Sarah, mum of William and Ellen a Happy 40th birthday, whilst we have not always seen eye to eye in life, which was a shame I wish you well and thanks for your support.
Today has been very strange, it started at 0430 am this morning with I must say the most enormous thunder clap I have ever heard over my house, this continued for 4 hours and the strength, power and violence of that storm. I had an appointment at a local school which was under storm water and raw sewage when I arrived so I tactfully retreated and suggested we meet again. I am working with a local school developing a business plan with them under a voluntary scheme called take 5 it should be fun and puts my management consultancy experience to great use.
Today has been pretty crap, I had until 6 tonight not really eaten for 36 hours, mainly because I did not want to, however a binge this evening has left me feeling a bit bloated and unwell.
I am finding the frustration of simple things stressful, one moment I am full of energy the next very lethargic and unable to do simple things like book concert tickets etc. I am trying to do things mentally and they do not just get done or fixed. I have become stressed and noticed that relaxation efforts have seen me unable to relax, maybe through lack of sleep, but maybe through the cycle of emotions my mind is going through. I have that meaningless outlook today.
I think some of it is not having medical attention for 7 days. I have spent hours going to and fro hospital and now that has stopped until Tuesday when I have my pre Chemo and Radiation sessions. Then 6 days wait for my first overnight stay. There is a feeling of withdrawal a lack of support, perhaps even frightened of being alone medically. I know it is a classic feeling after treatment has finished but surprised to feel it mid term.
I found myself having to choose between watching big brother and Glastonbury, of course Glastonbury won, does not quite seem the same this year without John Peel. This time last year I was there watching Oasis what a difference a year makes. Mad Marta is there and I know she will not mind the mud and slush and asked her to have a pint of warm cider with ginger with me.
The 12 months can only be described as horrible. I ended up with cancer, emotionally I was taken for a huge ride in my love life falling madly in love with a woman who I thought could bring me happiness only to find it one way and all me. Her motives based upon sex and financial security for her. I did tell her I was ill as we did keep loosely in touch, but nothing, no reaction, naff all. You know I am still angry to this day, those who know the story will understand why.
It is really hard when your tired to remain positive I know my darling friend O has tried tonight but it is best to nod and agree with me and let me wake up tomorrow refreshed and waiting for a new dawn, one day closer to recovery.
Night all, keep attacking even I am stuck in the cider bar, listening to the Doves x
Thursday, June 23, 2005
Day 33 - Eh nothing to report
Sunrise 28/2/2005 looking towards Dawlish Warren and Exmouth
In the mundane build up to radiotheraphy and chemo, Thursday can only be described as a dull day, very relaxed and quite frankly a great day for recovery.
Wednesday, June 22, 2005
Day 32 - My life has just begun
We all know life moves in cycles. Today has been a busy day as have the last 3 days. Three trips to the hospital and a chance meeting of Steven Kenny the guy that I worked with at the National Rail Enquiry Service who got me into Management Consultancy. I had not seen them for 5 years and what an opportunity bagging them outside the FORCE centre. Of course I had to convey the bad news which I have adopted a script and quickly move them through it before moving on and asking them about their lives. It works as it gives people chance to take it all in, their mate, full of beans no very ill with cancer.
Today was relaxation and it was welcoming to know that one of the fellow people attending had the same healing pain as me. A sharpe, red hot poker type pain, described as nettle rash. It is spot on its a horrid type pain and I have managed to avoid it until tonight but as I speak my neck is burning and on fire.
I mentioned yesterday I maybe looking to change careers and tonight that took a great turn for the better. As many of you will know my photography has taken off and going very well, so much so that "Heron Studios" is a name that fits in nicely with me and the future business. I went today to see a picture framers and gallery in a small cosmo town in Devon which has scope to grow the existing business and develop my own photography. I fell in love with the concept, the place, the lifestyle, and over the weekend I need to view the books and establish whether I can make a go of it fingers crossed!
Life is good at the moment if not painful, it is all relative, last week it was crap today it is good, seize the good, the opportunities whilst you can because tomorrow you could be me! Think on that, keep attacking.
N x
Today was relaxation and it was welcoming to know that one of the fellow people attending had the same healing pain as me. A sharpe, red hot poker type pain, described as nettle rash. It is spot on its a horrid type pain and I have managed to avoid it until tonight but as I speak my neck is burning and on fire.
I mentioned yesterday I maybe looking to change careers and tonight that took a great turn for the better. As many of you will know my photography has taken off and going very well, so much so that "Heron Studios" is a name that fits in nicely with me and the future business. I went today to see a picture framers and gallery in a small cosmo town in Devon which has scope to grow the existing business and develop my own photography. I fell in love with the concept, the place, the lifestyle, and over the weekend I need to view the books and establish whether I can make a go of it fingers crossed!
Life is good at the moment if not painful, it is all relative, last week it was crap today it is good, seize the good, the opportunities whilst you can because tomorrow you could be me! Think on that, keep attacking.
N x
Tuesday, June 21, 2005
Day 31 0ne calender month!
I am sorry I am unable to make a post tonight as I am naked on Salisbury Plain!
Monday, June 20, 2005
William and Ellen 19/6/2005
William and Ellen the reason to win my battle with cancer taken yesterday in our new Olympic size pool!
Posted by Hello
Day 31 - Relaxation
I met Laura's mum today. Lauras Mum, Jackie was sat in a chair at the FORCE centre I did not recognise her as she had less hair than me. The conversation that followed was more like 2 Dunkirk verterns on the boat across the Channel. There is a black humour amongst cancer sufferers an attempt mainly to instill fun into what is mainly a dull and monotonous existence once treatment begins. I like most cancer fighters have no pain from cancer but from attempts to beat it whether it be surgery, radiotherapy or chemo.
I was the only participant today at the FORCE relaxation class, but hey it was great. I have learnt to snooze, deep breathing and gently snoring, all the time I am quietly asleep, well loudly but aware of my surroundings. The relaxation classes are a fantastic way of winding down and being disciplined about life. The discipline of turning up, meeting fellow cancer battlers and the great surroundings are just a fantastic experience. I am finding an inner self a well being in myself. In so much that I spent the day sorting out and printing a new portfolio of pictures. I am exploring a new business opportunity which would develop my photography into cards, calendars, and postcards and prints and combine a new career, this could be the last few years as a management consultant.
Today was a good day, the pain is subsiding and perhaps the Doctor was right there was an infection, what I do know is that does not hurt as much and quality of life is now a fab 5 out of 10!
Keep attacking Nigel
I was the only participant today at the FORCE relaxation class, but hey it was great. I have learnt to snooze, deep breathing and gently snoring, all the time I am quietly asleep, well loudly but aware of my surroundings. The relaxation classes are a fantastic way of winding down and being disciplined about life. The discipline of turning up, meeting fellow cancer battlers and the great surroundings are just a fantastic experience. I am finding an inner self a well being in myself. In so much that I spent the day sorting out and printing a new portfolio of pictures. I am exploring a new business opportunity which would develop my photography into cards, calendars, and postcards and prints and combine a new career, this could be the last few years as a management consultant.
Today was a good day, the pain is subsiding and perhaps the Doctor was right there was an infection, what I do know is that does not hurt as much and quality of life is now a fab 5 out of 10!
Keep attacking Nigel
Sunday, June 19, 2005
Winter Blues
On of my favourite pictures, a Winters day taken at Powderham, Devon in December 2004
Posted by Hello
Day 30 - Pagan weekend
The weekend draws to a conclusion and I hope the pain will start to conclude. I was unable to conclude a blog entry on Friday because I lost the plot.
I had a Doctors appointment on Friday afternoon to attempt to resolve the pain. Simon Rains is my Doctor and I have nothing but the most admiration for him. I broke down and cried as I described the ongoing pain, the shoulder throbbing, the crease line cut, which burns and feels on fire and the nerve ending electric shocks added to the pain in my skull behind my left ear. The pain got worse as I stood up and frequently it would paralyse me with a shock type pain, which would last up to 10 seconds. I came away from the surgery and made my way to the chemist.
I had been prescribed a morphine sulphate solution to add to my existing painkillers. It was clear that the pain and the stress would get to me. I walked into the chemist and there she was stood next to the chair meant for people like me. The young fat girl in private school uniform, the one that refused to give up her seat for me despite the fact I was in agony. This time was different, she was stood I paid the 13 plus quid for my prescription and used tactics last seen at Stalingrad swooping on the chair and disposing “Dipsy” from her perch.
On the walk back home I lost the plot the pain, stress, confusion, anger set in I made it to the village green sat on the seat and broke down is tears, and the why me syndrome set in. When the pain gets tough and the future is just more pain and tears with radiotherapy and chemo your mind questions the reason to go on. Is the pain worth it? I sat on the bench and sobbed just wanting to go back to the life I had 5 weeks ago without the knowledge that I have a potentially fatal illness. The trouble with crying in a public setting is that you are exposed for all to see, but I did not care, I had the need to cry and I did it in style.
Crying helped. This weekend despite the heat was incredibly quiet trying to ease the pain, worrying about going back to the Doctor on Monday and the search for restoring the quality of life from 1 out of 10 to nearer 5, the drugs have done that but longer term I need to start to see mend and recovery from surgery.
I was able to recoup my losses earlier in the week from Royal Ascot and made a staggering £37.50 profit in 5 days. However, add that to my first ever sale on e-bay of £2.34p I will be off to the newsagent tomorrow ordering the yacht brochures!
I am going to spend this week moving on from learning chords and A, E and D and moving forward in putting together my picture and art portfolio. I hope to have designed my first greeting cards and postcards by the end of the week so time to turn the negetivity of pain into artistic positive energy.
I had taken a strong stance against armchair doctors, a posting on Friday to a request for support to mouthcancerfoundation.org sent off into a panic and frenzy. It was clear that the postee told me “go get a PEG tube fitted now” I have had what you had and you need the tube, (which is a feeding tube inserted into your tummy now as it is less painful). Now this guy really wound me up, ok he has had the same illness as me but we are all different. I felt like replying, look mate I have a tonsil, wisdom tooth and the left side of my neck out but still be able to eat normally from 2 hours after the operation. For those that know me I am able to cook and fend for myself, I blend, cook, smoothie and my juice maker works daily. If I have to breakdown my food my solids into blended food I will do, but it will be a last resort.
I was very lucky as another cancer sufferer wrote today and said “hey ignore them it is not as bad as you think”
Sleep tight! Keep attacking Nigel
Big thank you to Pat, Ron, Orp, Kevin, Sarah and Will and Ellen for my super Fathers day gifts.
I had a Doctors appointment on Friday afternoon to attempt to resolve the pain. Simon Rains is my Doctor and I have nothing but the most admiration for him. I broke down and cried as I described the ongoing pain, the shoulder throbbing, the crease line cut, which burns and feels on fire and the nerve ending electric shocks added to the pain in my skull behind my left ear. The pain got worse as I stood up and frequently it would paralyse me with a shock type pain, which would last up to 10 seconds. I came away from the surgery and made my way to the chemist.
I had been prescribed a morphine sulphate solution to add to my existing painkillers. It was clear that the pain and the stress would get to me. I walked into the chemist and there she was stood next to the chair meant for people like me. The young fat girl in private school uniform, the one that refused to give up her seat for me despite the fact I was in agony. This time was different, she was stood I paid the 13 plus quid for my prescription and used tactics last seen at Stalingrad swooping on the chair and disposing “Dipsy” from her perch.
On the walk back home I lost the plot the pain, stress, confusion, anger set in I made it to the village green sat on the seat and broke down is tears, and the why me syndrome set in. When the pain gets tough and the future is just more pain and tears with radiotherapy and chemo your mind questions the reason to go on. Is the pain worth it? I sat on the bench and sobbed just wanting to go back to the life I had 5 weeks ago without the knowledge that I have a potentially fatal illness. The trouble with crying in a public setting is that you are exposed for all to see, but I did not care, I had the need to cry and I did it in style.
Crying helped. This weekend despite the heat was incredibly quiet trying to ease the pain, worrying about going back to the Doctor on Monday and the search for restoring the quality of life from 1 out of 10 to nearer 5, the drugs have done that but longer term I need to start to see mend and recovery from surgery.
I was able to recoup my losses earlier in the week from Royal Ascot and made a staggering £37.50 profit in 5 days. However, add that to my first ever sale on e-bay of £2.34p I will be off to the newsagent tomorrow ordering the yacht brochures!
I am going to spend this week moving on from learning chords and A, E and D and moving forward in putting together my picture and art portfolio. I hope to have designed my first greeting cards and postcards by the end of the week so time to turn the negetivity of pain into artistic positive energy.
I had taken a strong stance against armchair doctors, a posting on Friday to a request for support to mouthcancerfoundation.org sent off into a panic and frenzy. It was clear that the postee told me “go get a PEG tube fitted now” I have had what you had and you need the tube, (which is a feeding tube inserted into your tummy now as it is less painful). Now this guy really wound me up, ok he has had the same illness as me but we are all different. I felt like replying, look mate I have a tonsil, wisdom tooth and the left side of my neck out but still be able to eat normally from 2 hours after the operation. For those that know me I am able to cook and fend for myself, I blend, cook, smoothie and my juice maker works daily. If I have to breakdown my food my solids into blended food I will do, but it will be a last resort.
I was very lucky as another cancer sufferer wrote today and said “hey ignore them it is not as bad as you think”
Sleep tight! Keep attacking Nigel
Big thank you to Pat, Ron, Orp, Kevin, Sarah and Will and Ellen for my super Fathers day gifts.
Saturday, June 18, 2005
Day 29 - No post
Guys it is too hot to post, too hot to think, too hot to type.
So no post today, too much pain, back to the pool.
So no post today, too much pain, back to the pool.
Friday, June 17, 2005
Day 28 - I do not have cancer
I want to share an early morning post with you I have woke up on the 4 week anniversary of my diagnosis and have 2 things I want I want to share with you:
I would sit in front of you today and say I do not have cancer. I have no ill feelings, no side effects, no pain from it. I honestly believe that I do not have cancer, how scary is that, when I know I do I have seen the lump and tonsil results.
Denial or what, I know I have 2 stages in the cycle to go through grief and denial but thinking I do not have cancer is that a positive or a negative?
The 2nd is this posting sent back from a contributor to www.mouthcancerfoundation.org
or cut and paste this link http://rdoc.org.uk/eve/ubb.x/a/frm/f/75510549
I will share it with you as it highlights the horrors I have to face real soon.
I know its early but FUCK! Sorry about that.
Hi Nigel. Good luck with the Radiotherapy and prepare yourself mentally for the road ahead as radiotherapy can be quite painful and the associated effects very uncomfortable. Have you been told you will need a stomach peg? If you do then it is essential that your nutritional intake is cosistent otherwise the weight falls off and you get pretty weak. if your throat really begins to hurt then i found the best thing to use was cocaine mouthwash but limit the use of it as it cannot be prescribed too often. I had a six week course of radiotherapy directed at three points on my neck and throat so i was pretty burnt up at the end of it. with my treatment i did'nt start to feel the effect untill roughly two weeks in....and then i had to liquid feed for some months after. i don't know how much radiotherapy has been planned for you but if its aimed at more than one location then give yourself plenty of recovery time as it takes some getting used to and you may be left with a dry mouth as a result. fatigue is also a side effect of intense radiotherapy and can slow you down for months.The whole thing absolutely knackered me.My consultant played down the Radiotherapy and almost treated the event as nothing more than routine but I found it very tough and i wish i had known a little more about it beforehand as in all fairness, a consultant would rarely know exactly how it feels to be zapped with radiotherapy and how it leaves you feeling.
Two and a half years on and i'm pretty much over it all now, though still a little mentally scarred and the dry mouth thing is a permanent irritant. But...i'm still walking the planet and thats something to be grateful for.
Talk to various patients on the site about their own experiences with treatment and how they coped as people cope differently though there is no escaping the discomfort. I hope that what you need to have done does not prove too distressing for you and that you get through it with as little pain as possible.
Its not something that many people will experience and my message to your family is to be close to hand in those first few months when you are likely to feel at your lowest and to give you plenty of emotinal support and to make sure that you eat enough...albiet that it may have to be liquidised. you've had the surgery to chop the bad bits out and now the radiotherapy will kill off any other dodgy cells that are left lurking.
Be strong and keep us posted.
I would sit in front of you today and say I do not have cancer. I have no ill feelings, no side effects, no pain from it. I honestly believe that I do not have cancer, how scary is that, when I know I do I have seen the lump and tonsil results.
Denial or what, I know I have 2 stages in the cycle to go through grief and denial but thinking I do not have cancer is that a positive or a negative?
The 2nd is this posting sent back from a contributor to www.mouthcancerfoundation.org
or cut and paste this link http://rdoc.org.uk/eve/ubb.x/a/frm/f/75510549
I will share it with you as it highlights the horrors I have to face real soon.
I know its early but FUCK! Sorry about that.
Hi Nigel. Good luck with the Radiotherapy and prepare yourself mentally for the road ahead as radiotherapy can be quite painful and the associated effects very uncomfortable. Have you been told you will need a stomach peg? If you do then it is essential that your nutritional intake is cosistent otherwise the weight falls off and you get pretty weak. if your throat really begins to hurt then i found the best thing to use was cocaine mouthwash but limit the use of it as it cannot be prescribed too often. I had a six week course of radiotherapy directed at three points on my neck and throat so i was pretty burnt up at the end of it. with my treatment i did'nt start to feel the effect untill roughly two weeks in....and then i had to liquid feed for some months after. i don't know how much radiotherapy has been planned for you but if its aimed at more than one location then give yourself plenty of recovery time as it takes some getting used to and you may be left with a dry mouth as a result. fatigue is also a side effect of intense radiotherapy and can slow you down for months.The whole thing absolutely knackered me.My consultant played down the Radiotherapy and almost treated the event as nothing more than routine but I found it very tough and i wish i had known a little more about it beforehand as in all fairness, a consultant would rarely know exactly how it feels to be zapped with radiotherapy and how it leaves you feeling.
Two and a half years on and i'm pretty much over it all now, though still a little mentally scarred and the dry mouth thing is a permanent irritant. But...i'm still walking the planet and thats something to be grateful for.
Talk to various patients on the site about their own experiences with treatment and how they coped as people cope differently though there is no escaping the discomfort. I hope that what you need to have done does not prove too distressing for you and that you get through it with as little pain as possible.
Its not something that many people will experience and my message to your family is to be close to hand in those first few months when you are likely to feel at your lowest and to give you plenty of emotinal support and to make sure that you eat enough...albiet that it may have to be liquidised. you've had the surgery to chop the bad bits out and now the radiotherapy will kill off any other dodgy cells that are left lurking.
Be strong and keep us posted.
Thursday, June 16, 2005
Day 27 Jack and Jill
Hilary Roberts crap tips: 2
Pounds lost at Royal Ascot thanks to Hils: £130
Smoothies: 1
Vistors called Jack and Jill serious
E bay purchases: Nil
It is day 27 and three weeks ago today I have the neckdissectionn, and I feel worse now than I did then! I have booked an appointment at the Starcross Surgery tomorrow to increase the drugs, alas of the legal kind, but having never had theillegall version I am not sure why I said that, old age, senility and overdosed on naturalyogurtt oh err Mrs.
There is some benefit of being ill, apart from small fat girls who fail to give up theirseatst to 41 year old invalids. You ring the surgery and get an appointment straight away, the dentist will see you today and ring the Council mention you have cancer and blimey that form is with you next day. I think I would be well suited to being a Doctors receptionist, think of the fun you could have with peoples records. Now look lets be honest faced with finding out whether your enemy in the Village has an nasty illness cause by too much over indulgence on carrot wine at the Village fete is one we would all have great temptation not pressing that print button and leaving a copy in the three village pubs. Mind you not sure they could read long words in Starcross.
OMG watching the news how adults kidnapped little kids in Cambodia for money andshot aa 3 year old in the head what a crap World we live in. Adults have a lot to answer for.
I had 2 visitors today one called Jack & Jill today, not hills, no pales, in fact they both had no crowns on but how fantastic is that too nursery characters with separate careers in the samebuildingg. Just like Peters and Lee! (I was too young to remember them but battypay told me about them)
Both Jack and Jill are amazing people. Jill is a trained armotherapist and gives the most relaxing massage ever, despite her daughter Aimee fighting her own personal battle at the moment. Jill had to contend with my snoring, but as she said proof her talents were not wasted. Now if any potential partners reading this it was a one off and the snoring was brought on by the use of lavender! Yeah right I here you say.
Whilst the NHS are very good at treating the medical conidtion the mental well being is half the battle and I am winning both. I would love to marry an amrotherapist, any offers? So Jacks and Jill thanks but next time can you leave the cracked egg head fat lad and all those kings horses behind.
I would like to hello and thanks to very special people from Lambeth TP and Big Jon Dolan who both wrote to me today and said some amazing inspirational things. A special thanks for TP for giving me the inspiration for getting back to running as soon as I get over the surgery there are streets to und and money to be raised you can hear the collecting tins rattling as we speak. Oh and thanks for the advice about the French knickers!
I am trying to think of something inspirational that I did today and as my backside was glued to the chair but then the pain did not allow me to do much more.
Well I am off to continue my India trip, which as not yet got me out of Delhi Aiport, well nothing like planning!
Keep attacking and love ya x
Pounds lost at Royal Ascot thanks to Hils: £130
Smoothies: 1
Vistors called Jack and Jill serious
E bay purchases: Nil
It is day 27 and three weeks ago today I have the neckdissectionn, and I feel worse now than I did then! I have booked an appointment at the Starcross Surgery tomorrow to increase the drugs, alas of the legal kind, but having never had theillegall version I am not sure why I said that, old age, senility and overdosed on naturalyogurtt oh err Mrs.
There is some benefit of being ill, apart from small fat girls who fail to give up theirseatst to 41 year old invalids. You ring the surgery and get an appointment straight away, the dentist will see you today and ring the Council mention you have cancer and blimey that form is with you next day. I think I would be well suited to being a Doctors receptionist, think of the fun you could have with peoples records. Now look lets be honest faced with finding out whether your enemy in the Village has an nasty illness cause by too much over indulgence on carrot wine at the Village fete is one we would all have great temptation not pressing that print button and leaving a copy in the three village pubs. Mind you not sure they could read long words in Starcross.
OMG watching the news how adults kidnapped little kids in Cambodia for money andshot aa 3 year old in the head what a crap World we live in. Adults have a lot to answer for.
I had 2 visitors today one called Jack & Jill today, not hills, no pales, in fact they both had no crowns on but how fantastic is that too nursery characters with separate careers in the samebuildingg. Just like Peters and Lee! (I was too young to remember them but battypay told me about them)
Both Jack and Jill are amazing people. Jill is a trained armotherapist and gives the most relaxing massage ever, despite her daughter Aimee fighting her own personal battle at the moment. Jill had to contend with my snoring, but as she said proof her talents were not wasted. Now if any potential partners reading this it was a one off and the snoring was brought on by the use of lavender! Yeah right I here you say.
Whilst the NHS are very good at treating the medical conidtion the mental well being is half the battle and I am winning both. I would love to marry an amrotherapist, any offers? So Jacks and Jill thanks but next time can you leave the cracked egg head fat lad and all those kings horses behind.
I would like to hello and thanks to very special people from Lambeth TP and Big Jon Dolan who both wrote to me today and said some amazing inspirational things. A special thanks for TP for giving me the inspiration for getting back to running as soon as I get over the surgery there are streets to und and money to be raised you can hear the collecting tins rattling as we speak. Oh and thanks for the advice about the French knickers!
I am trying to think of something inspirational that I did today and as my backside was glued to the chair but then the pain did not allow me to do much more.
Well I am off to continue my India trip, which as not yet got me out of Delhi Aiport, well nothing like planning!
Keep attacking and love ya x
Sunrise over Dawlish Warren 28/2/2005
Friends have asked me to show off some of my pictures. The blog is the best place, it shows another dimension to me, the creative side I never thought I had so each day a new photograph will appear.
Posted by Hello
Wednesday, June 15, 2005
Day 26 - Bedtime result
This will be a very short log entry over and out!
Seriously today is been hard work since around 2am this morning I have had to deal with major big time pain from the left side if my neck and a new position underneath my Adams apple. (Who named it that?)
The pain has been a combination of soreness from positions I had to be tugged and pulled into over the past few days and the tingly nerve endings returning back to normality. The left side of my face, neck and shoulder have been for the past three weeks like a slab of ham waiting the Christmas feast. Like that ham no amount of prodding, fingering, strecthing, punching can hurt it, alas the feeling is now coming back.
So the pain is reduced by drugs alas not enough to allow me to get the old white frock on, put on the wizards hat and "and see my baby drive", and prance around naked Salisbury plain or is it Brighton sea front. This solstice I think I will do something dull like get up early and wait for the sun!
I have spent the night planning my trip to India, the trip will be paid for by selling the camper van so the best hotels = best price for the camper. Now some of you say take the camper, alas there is nothing camp about my van, but my last experience was she broke down in the garage in the village 80 yards from my house! E-bay here we come but may have a problem at the post office sending her 1st class post.
Anyway you will be pleased to hear that Delhi is stop one, stop two err watch this space.
Radiation starts on the 4th July 2005, 1st Chemo on the 5th :(
keep attacking N x
Lesson of today: Wearing French knickers to a relaxation class are not a good idea!
Seriously today is been hard work since around 2am this morning I have had to deal with major big time pain from the left side if my neck and a new position underneath my Adams apple. (Who named it that?)
The pain has been a combination of soreness from positions I had to be tugged and pulled into over the past few days and the tingly nerve endings returning back to normality. The left side of my face, neck and shoulder have been for the past three weeks like a slab of ham waiting the Christmas feast. Like that ham no amount of prodding, fingering, strecthing, punching can hurt it, alas the feeling is now coming back.
So the pain is reduced by drugs alas not enough to allow me to get the old white frock on, put on the wizards hat and "and see my baby drive", and prance around naked Salisbury plain or is it Brighton sea front. This solstice I think I will do something dull like get up early and wait for the sun!
I have spent the night planning my trip to India, the trip will be paid for by selling the camper van so the best hotels = best price for the camper. Now some of you say take the camper, alas there is nothing camp about my van, but my last experience was she broke down in the garage in the village 80 yards from my house! E-bay here we come but may have a problem at the post office sending her 1st class post.
Anyway you will be pleased to hear that Delhi is stop one, stop two err watch this space.
Radiation starts on the 4th July 2005, 1st Chemo on the 5th :(
keep attacking N x
Lesson of today: Wearing French knickers to a relaxation class are not a good idea!
Tuesday, June 14, 2005
Day 25 - Return of the mask
Smoothies: 1
Pain: 3
Looks: 10/10 of course
Mind: Sound
Thoughts about missing this years Glastonbury: 3
£160 up after day one of Royal Ascot
As the days move forward there is a feeling of the mundane setting in, and it appears on my small horizon, which is my isolated life. Today saw another trip to the hospital to have a scan wearing my mask whilst strapped to a scanning table. When I say strapped I mean strapped, the mask encloses your face and there is less than 5mm to spare. You cannot move, your breathing becomes constricted and life takes a new dimension. It is here when you ask why me. The table moves inside the scanner and after sixty seconds it is all over. The nurse told me it would be the same every single day, just 60 seconds a each day on the radiation table, but the after effects will last a life time.
I do have a fear of loneliness setting in over the summer so I have made moves on the volunteering front, bit early to say but there are two things that really I would like to do. I have also made moves with FORCE to establish a support group for blokes with cancer, more to follow, but some blokes are just crap at going to the doctors, realising we are seriously ill and fail to cope with emotions.
I was able to have my first Swedish massage today at the FORCE centre, Emma who I met today soon realised that my left side of my shoulder was a mess and gently worked her magic into releasing my mind and muscles to a more relaxed spiritual inner self. In just 24 hours with the pain killers and the massage and the knowledge that soon I will be in a daily mundane routine, which I know, I will dislike and rebel against. I do have control, my life back, not scared to make decisions, my voice and throat returning to normal and pain of surgery subsiding. Alas I know full well the voice and throat will suffer over the next 8 weeks.
I have my life back, today I was able to do some gentle housework, you know tickling the dust and spraying the bathrooms with scented cleaners. What it did for me is brought me back to a sense of reality. I walked very slowly 2 miles tonight with no ill effects, not out of breath and returned well. I know I have to be careful lifting, pulling but walking helps the release of the muscles and helps the stress levels.
Tomorrow sees another trip to the Force centre for a counselling and the midweek relaxation session, boy I am looking forward to that. I may have told you I pick up Pat and Ron’s old car tomorrow. Lizzie the love of my life my 21 year old babe fired first time today but there is no chance I can drive her for some months, with no powered steering her 2.5 tonnes will remain on the drive. I have never been a car queen so the runabout will give me freedom and flexibility during the next few months. It will also mean I can get to friends around and gives me some independence, which will spiritually lift me. The last few weeks
I have given a lot of thought to my future, I see it living my life for me and the start comes tonight as I book my flights to India in November, bring on life!
Sleep tight another day, another learning experience, what have you learnt today?
I have learnt that life does not need to be complicated and relaxation can be found in many different ways.
Pain: 3
Looks: 10/10 of course
Mind: Sound
Thoughts about missing this years Glastonbury: 3
£160 up after day one of Royal Ascot
As the days move forward there is a feeling of the mundane setting in, and it appears on my small horizon, which is my isolated life. Today saw another trip to the hospital to have a scan wearing my mask whilst strapped to a scanning table. When I say strapped I mean strapped, the mask encloses your face and there is less than 5mm to spare. You cannot move, your breathing becomes constricted and life takes a new dimension. It is here when you ask why me. The table moves inside the scanner and after sixty seconds it is all over. The nurse told me it would be the same every single day, just 60 seconds a each day on the radiation table, but the after effects will last a life time.
I do have a fear of loneliness setting in over the summer so I have made moves on the volunteering front, bit early to say but there are two things that really I would like to do. I have also made moves with FORCE to establish a support group for blokes with cancer, more to follow, but some blokes are just crap at going to the doctors, realising we are seriously ill and fail to cope with emotions.
I was able to have my first Swedish massage today at the FORCE centre, Emma who I met today soon realised that my left side of my shoulder was a mess and gently worked her magic into releasing my mind and muscles to a more relaxed spiritual inner self. In just 24 hours with the pain killers and the massage and the knowledge that soon I will be in a daily mundane routine, which I know, I will dislike and rebel against. I do have control, my life back, not scared to make decisions, my voice and throat returning to normal and pain of surgery subsiding. Alas I know full well the voice and throat will suffer over the next 8 weeks.
I have my life back, today I was able to do some gentle housework, you know tickling the dust and spraying the bathrooms with scented cleaners. What it did for me is brought me back to a sense of reality. I walked very slowly 2 miles tonight with no ill effects, not out of breath and returned well. I know I have to be careful lifting, pulling but walking helps the release of the muscles and helps the stress levels.
Tomorrow sees another trip to the Force centre for a counselling and the midweek relaxation session, boy I am looking forward to that. I may have told you I pick up Pat and Ron’s old car tomorrow. Lizzie the love of my life my 21 year old babe fired first time today but there is no chance I can drive her for some months, with no powered steering her 2.5 tonnes will remain on the drive. I have never been a car queen so the runabout will give me freedom and flexibility during the next few months. It will also mean I can get to friends around and gives me some independence, which will spiritually lift me. The last few weeks
I have given a lot of thought to my future, I see it living my life for me and the start comes tonight as I book my flights to India in November, bring on life!
Sleep tight another day, another learning experience, what have you learnt today?
I have learnt that life does not need to be complicated and relaxation can be found in many different ways.
Monday, June 13, 2005
Day 24 - Chose Zorrow! the man with the mask
Pain: before drugs 8, after new drugs prescribed tonight 4
Smoothies: Nil
Hugs from owners of health food shops One (Bran Tub, St Leonard’s, highly recommend, hugs are top notch as well)
Hugs from City and County Councillors Two
Fat girls about 13 who apart from weight looked healthy, but waiting for mother who worked behind counter refused to give up seat in chemist to man who and major surgery and cancer One
It is sort of surreal moment. I am sat in my kitchen watching last weekends British Lions match and I know the result! My PA in London who has just left to go live in Edinburgh was from New Zealand; Bevan was one of the nicest lads I have ever met. I have set myself the aim of being in NZ for the end of the year. I spend far too long researching and not travelling, adding in my first trip to India on the way to Kiwi land. You realise that there are no ground-based mammals in NZ except the Kiwi. Life is all about exploration, and it is not until you face illness that it brings it home pointless having cash in the bank spend it! Anyone want to join me?
Oh the news is on, Michael Jackson not guilty on ALL charges! Ok how did they work that one out?
Today saw the fitting of my mask, the plastic mask which will be used to pin me down to the table and ensure that the beams go to the right place. The whole process involved contortion of my neck and body which saw pain rise to gale force 10 and a wrestling match which was last seen at the start of a Matalan sale. It was a sort of catch weight contest 2 small petite women hauling me around a table as I was unable to move through and pain or fear. In some respects every straight blokes dream! At the end of the process there was much huffing and puffing and not a single penny changed hands what a result.
The mask making is much like papermaching at school, but without the silly and useless aprons. The process involves slapping lashings of minty flavoured hot plaster on your face, not by me of course, including over your closed eyes. The plaster excludes your mouth and nose and then hot bandages are applied very similar to the ones you get at the end of a cheap curry in the Light of Dawlish or the Golden Temple. Then in less than three minutes the whole things peels off your face and one of the people who ten minutes earlier were grappling and groping you, switch roles and gently bath your skin with warm water mopping your plaster clad brow.
The plastic mask is ready in just one hour but the torture or pleasure depending on your liking for S&M and bondgae is not finished. You have to be held down, so that a black and decker drill is used and hot glue to attach vertical attachments which will provide the base to secure you down. As you lie there with the new plastic mask on face, you can hear sizzling of plastic glue and smell the aroma which reminds you of affix glue when you were a child. The finish article has 4 screws which will be used to pin you down during the dreaded rays.
I must get a picture and show you tomorrow as I have another appointment this time for a scan, then another on Wednesday, perhaps I should take Lizzie and camp in the car park.
Lunchtime was fun, (look in my life trips to St Leonards are fun) a visit to St Leonard’s and hug from Phil Brock a macho, Lib Dem City and Councillor (That is an oxymoron) I think who was genuinely pleased to see me. This hug was amazing it was spontaneous and meant. The first time in my life I felt that someone who was not a family member, friend or lover genuinely cared for me and I can ensure you the wow factor existed all day.
The wow factor continued until after lunch, Kevin and I had lunch well a toasted sarnie in downtown St Leonard’s when today’s medical question got onto T cells. Kevin is a great mate, an awesome bloke who i hold in the hihest regard and a font of all my medical questions. Well he does have the medical degree against my E grade GCE in biology. I had read that during Chemo and Radiation your T cells can reduce and get to a level where the slightest illness can reduce your chances to fight off infection and you get very ill, if cancer, neck dissections and removed tonsils and teeth were not enough shit to contend with. Kevin ever the professional gave me suitable advice on all matters medical including safe sex! I told him I preferred a hot meal these days as the chances of catching anything remotely dodgy from that avenue of pleasure meant that I had more chances of becoming Pope than getting the opportunity of putting his advice to good use!
Oh look there is smoke! Good night I am off to put on my habit!
Smoothies: Nil
Hugs from owners of health food shops One (Bran Tub, St Leonard’s, highly recommend, hugs are top notch as well)
Hugs from City and County Councillors Two
Fat girls about 13 who apart from weight looked healthy, but waiting for mother who worked behind counter refused to give up seat in chemist to man who and major surgery and cancer One
It is sort of surreal moment. I am sat in my kitchen watching last weekends British Lions match and I know the result! My PA in London who has just left to go live in Edinburgh was from New Zealand; Bevan was one of the nicest lads I have ever met. I have set myself the aim of being in NZ for the end of the year. I spend far too long researching and not travelling, adding in my first trip to India on the way to Kiwi land. You realise that there are no ground-based mammals in NZ except the Kiwi. Life is all about exploration, and it is not until you face illness that it brings it home pointless having cash in the bank spend it! Anyone want to join me?
Oh the news is on, Michael Jackson not guilty on ALL charges! Ok how did they work that one out?
Today saw the fitting of my mask, the plastic mask which will be used to pin me down to the table and ensure that the beams go to the right place. The whole process involved contortion of my neck and body which saw pain rise to gale force 10 and a wrestling match which was last seen at the start of a Matalan sale. It was a sort of catch weight contest 2 small petite women hauling me around a table as I was unable to move through and pain or fear. In some respects every straight blokes dream! At the end of the process there was much huffing and puffing and not a single penny changed hands what a result.
The mask making is much like papermaching at school, but without the silly and useless aprons. The process involves slapping lashings of minty flavoured hot plaster on your face, not by me of course, including over your closed eyes. The plaster excludes your mouth and nose and then hot bandages are applied very similar to the ones you get at the end of a cheap curry in the Light of Dawlish or the Golden Temple. Then in less than three minutes the whole things peels off your face and one of the people who ten minutes earlier were grappling and groping you, switch roles and gently bath your skin with warm water mopping your plaster clad brow.
The plastic mask is ready in just one hour but the torture or pleasure depending on your liking for S&M and bondgae is not finished. You have to be held down, so that a black and decker drill is used and hot glue to attach vertical attachments which will provide the base to secure you down. As you lie there with the new plastic mask on face, you can hear sizzling of plastic glue and smell the aroma which reminds you of affix glue when you were a child. The finish article has 4 screws which will be used to pin you down during the dreaded rays.
I must get a picture and show you tomorrow as I have another appointment this time for a scan, then another on Wednesday, perhaps I should take Lizzie and camp in the car park.
Lunchtime was fun, (look in my life trips to St Leonards are fun) a visit to St Leonard’s and hug from Phil Brock a macho, Lib Dem City and Councillor (That is an oxymoron) I think who was genuinely pleased to see me. This hug was amazing it was spontaneous and meant. The first time in my life I felt that someone who was not a family member, friend or lover genuinely cared for me and I can ensure you the wow factor existed all day.
The wow factor continued until after lunch, Kevin and I had lunch well a toasted sarnie in downtown St Leonard’s when today’s medical question got onto T cells. Kevin is a great mate, an awesome bloke who i hold in the hihest regard and a font of all my medical questions. Well he does have the medical degree against my E grade GCE in biology. I had read that during Chemo and Radiation your T cells can reduce and get to a level where the slightest illness can reduce your chances to fight off infection and you get very ill, if cancer, neck dissections and removed tonsils and teeth were not enough shit to contend with. Kevin ever the professional gave me suitable advice on all matters medical including safe sex! I told him I preferred a hot meal these days as the chances of catching anything remotely dodgy from that avenue of pleasure meant that I had more chances of becoming Pope than getting the opportunity of putting his advice to good use!
Oh look there is smoke! Good night I am off to put on my habit!
Really helpful site
I have found this site very helpful: It has some sacrey statistics on it, but very helpful.
http://www.mouthcancerfoundation.org
http://www.mouthcancerfoundation.org
Sunday, June 12, 2005
Chose pain or gain Day 23
Pain 7, storm force 9 at times
Mental attitude 3 at time veering 5 and Northerly
Smoothies 0 but there is still time before bed
E bay purchases 1
I was reminded today that when I went into hospital I had no pain. I suspect that in 2 weeks when I face the mother of all treatments the current pain will have subsided replaced by blind fear and the pain of chemotherapy and radiation treatment.
I can assure you at 0200 this morning I got up and asked myself the question is this pain or gain. Is this all worth it? Now I can hear you scream you are 41, 2 great children blah blah and your right, but I am still allowed to think is it all worth it? Unless you have been here on the bus which has stopped and broken down the remaining positive all the time is simply not a response that we humans are conditioned to. I feel like Winsto Churchill during the darkest hours in 1940 and 41 giving rousing speeches only to retreat to the war rooms and drink himself silly to hide his fear.
It is not just the pain, it is the loss of dignity. I have noticed how the body reacts to illness, the simplest moment in my body sparks off painful electric shocks in my face, head and jaw. Your digestive systems goes into overdrive and controlling bowel movement becomes a skill akin to playing the bagpipes, holding your breath, squeezing in and marching briskly all at the right time. I have been affected by thrush as a by product of the antibiotics making simple things as using the loo a painful and harsh experience.
On top of this I have to live with the permanent fear of early death and future regime of pain which will be unleashed on this weak body in 2 weeks time.
In English medicine we treat the medical condition and not the mind. We are great at being able to diagnose and treat, but fail to see the benefit in positive mental attitude. I have yet to decide whether to get aggressive with cancer, beat it up and say "You bastard your finished" or treat it in a more rational manner and banish it and the thoughts from your mind.
Friends say to me we do not know what to say. I say do nothing, treat me normally, look me in the eyes and in your eyes hurt with me, your eyes will show you are with me on this long and hard journey.
There were two positives today, no three, the chance to see Sarah, William and Ellen, the chance to get out of the house tonight when O took me to the beach to dip my feet in the clean water of Dawlish Warren. The house had become a prisoner, I know I do not want to over do things but I felt trapped into a mundane regime which was not taxing my brain. The walk tonight proved that my fitness is fine and the pain subsides during walking. The last bit of good news is that I can slowly get back into walking something I have sadly missed over the past 4 weeks.
I am still strong in body and mind, but wanted to share my heart out today not for sympathy but out of understanding, that it hurts big time inside.
Keep attacking Nigel
Mental attitude 3 at time veering 5 and Northerly
Smoothies 0 but there is still time before bed
E bay purchases 1
I was reminded today that when I went into hospital I had no pain. I suspect that in 2 weeks when I face the mother of all treatments the current pain will have subsided replaced by blind fear and the pain of chemotherapy and radiation treatment.
I can assure you at 0200 this morning I got up and asked myself the question is this pain or gain. Is this all worth it? Now I can hear you scream you are 41, 2 great children blah blah and your right, but I am still allowed to think is it all worth it? Unless you have been here on the bus which has stopped and broken down the remaining positive all the time is simply not a response that we humans are conditioned to. I feel like Winsto Churchill during the darkest hours in 1940 and 41 giving rousing speeches only to retreat to the war rooms and drink himself silly to hide his fear.
It is not just the pain, it is the loss of dignity. I have noticed how the body reacts to illness, the simplest moment in my body sparks off painful electric shocks in my face, head and jaw. Your digestive systems goes into overdrive and controlling bowel movement becomes a skill akin to playing the bagpipes, holding your breath, squeezing in and marching briskly all at the right time. I have been affected by thrush as a by product of the antibiotics making simple things as using the loo a painful and harsh experience.
On top of this I have to live with the permanent fear of early death and future regime of pain which will be unleashed on this weak body in 2 weeks time.
In English medicine we treat the medical condition and not the mind. We are great at being able to diagnose and treat, but fail to see the benefit in positive mental attitude. I have yet to decide whether to get aggressive with cancer, beat it up and say "You bastard your finished" or treat it in a more rational manner and banish it and the thoughts from your mind.
Friends say to me we do not know what to say. I say do nothing, treat me normally, look me in the eyes and in your eyes hurt with me, your eyes will show you are with me on this long and hard journey.
There were two positives today, no three, the chance to see Sarah, William and Ellen, the chance to get out of the house tonight when O took me to the beach to dip my feet in the clean water of Dawlish Warren. The house had become a prisoner, I know I do not want to over do things but I felt trapped into a mundane regime which was not taxing my brain. The walk tonight proved that my fitness is fine and the pain subsides during walking. The last bit of good news is that I can slowly get back into walking something I have sadly missed over the past 4 weeks.
I am still strong in body and mind, but wanted to share my heart out today not for sympathy but out of understanding, that it hurts big time inside.
Keep attacking Nigel
Saturday, June 11, 2005
Chose sleep! day 23
Hours sleep 15
Smoothies nil
Meals 4
I can honestly say today was the dullest of my life, primarly due to the immense feeling of tiredness and need for sleep. I think the last 3 weeks have had a toll on my body I never expected and sleep was the only option.
I must not be too hard it is only 15 days after a massive operation which is still giving me "major league" pain daily, hourly and by the minute, the worst being the fibre optic nerve pain.
Sorry it is not witty, or fun today but sleep once agains beckons.
Keep attacking even in your sleep: Nigel x
Smoothies nil
Meals 4
I can honestly say today was the dullest of my life, primarly due to the immense feeling of tiredness and need for sleep. I think the last 3 weeks have had a toll on my body I never expected and sleep was the only option.
I must not be too hard it is only 15 days after a massive operation which is still giving me "major league" pain daily, hourly and by the minute, the worst being the fibre optic nerve pain.
Sorry it is not witty, or fun today but sleep once agains beckons.
Keep attacking even in your sleep: Nigel x
Friday, June 10, 2005
Chose life - Day 22
Tortilla Chips 16
Raspberey Smoothies 2
Pain before 1700 5 after 7
Unsubscribed painkillers lent from somebody else 2!
Today was my Dads birthday. If he had lived he would of been 77! My father was a man who kept his illness too himself, never expected help from anyone and gallantly went through life in pain with little support despite all our efforts. It was not until the end of his life was he able to speak about WW2 experiences as a boy sailor and the pain I could see in his elderly eyes as he expressed the horror of what he saw and participated in during the bloody days. I am so glad I am not like my dad.
The sea theme is prominant in my life. As I sat in the stern seats of the Starcorss to Exmouth Ferry today I thought about how many father would have reacted to my illness. I know he would of been there me as an adult, unlike he was physically as a child when I most needed him. I know that despite all he witnessed happening to me as a child and depsite his failure to intervene I still loved and miss him today.
I had a great day with Pat and Ron who without knowing it have have taken over a surrogate "parental" role. I value their experience, love, support and guidance they have given me, and the trust I have in them has no bounds. today I had the opportunity to be rational, think logically and at last start working out what I am going to do in the next 8 weeks. I am so lucky to have them both and even when after 5pm I was happy to sit in front of Auzzie Rules football and try and work out the rules no one bothered me about from their super little dog Oscar.
I did manage to spend my Derby day winnings investing it in their old car which is in great nick and will be an easier drive to chemo and radiation therapy than the non powered steered camper van.
I now know my 1st dates for Chemo and Radiation, it all kicks off on the 2nd July 2005, with an overnight chemo session and 5 days of radiation with 2 more chemo sessions followed by daily radiation for everyday for 6 weeks. Ron has kindly offered and I have accepted the offer to stay with me the first week just so that I can assess how it goes and how I react. So things are moving forward. off for more raspberry smoothies and one downside of visiting the Roberts household is that I have found my old ebay account! Oh no!
Keep attcking night x Nigel
Thursday, June 09, 2005
Day 21- Bollocks to cancer!
Teeth out at Dentist = Nil
New people wishing me "good luck" as if I was off to sail around the World = Three
Pain 7 but still decreasing, but still electric
Mind 3 as I spent £400 quid in Makro, 300 quid a new printer, Mincinglake watch out!
Day 21, three weeks ago I had the tonsil out, two weeks ago I had the neck dissection and wisdom tooth. Not worth celebrating! Let’s move on.
Today was good special thanks to Sarah and O for their help today, collectively helping with washing and lifts to dentist which happens to beside Makro helped me achieve my aims. I am now beginning to experience how older people get on in small villages without support, the answer they do not and they must feel so isolated. the West Country is full of lonely old people, came to Devon to retire, partner dies, no family local, too old to establish new circle of friends, stranded in a small town or village.
I have contacted a couple of volunteer organisations today, one of which will be a befriending organisation it is the least I can do.
I do feel a sense of loneliness, not through not having people around me or coming to visit, but the fight is very lonely. This was echoed in a documentary tonight by a 19 year old going through chemo therapy. I am fortunate that my regime is not the same, but I took away the sentiments of the doctors "It is the younger people you feel so guilty about, the ones you can treat, they have a chance and it is our job to ensure they are cured. They are the ones that keep me awake at night"
I have seen that look in my doctors eyes with me, I have seen their body language, the words they use are power words, treatment, all guns blazing, zapping, getting rid of, destroying, catching early, belt and braces, maximum doses, I owe to me and them to ensure that I win! Coming second is not an option I must win!
Kevin, called tonight, for those who do not this wonderful bloke, he has been a rock to me. Kevin is a staff nurse in the Oncology department at the RD&E hospital as well as being a bloody good Lib Dem Councillor. Kevin was on duty today and took a phone call today to book a Mr Nigel Gooding in for Chemo and Radiation therapy and the caller gave him my dates in a very matter of fact way. Kev if you are reading this I know how hard that call was to take and I know you had to take time out afterwards. Your a great bloke and this World needs more of you.
I find 7pm onwards very tiring, tonight is no exception however, it is clear that my normal avenues of de-stressing which involve exercise are not there at the moment because of my shoulder and neck. The cancer would be easier to cope with if I had full mobility and other areas of mind and body occupation need to be found, any suggestions?
New people wishing me "good luck" as if I was off to sail around the World = Three
Pain 7 but still decreasing, but still electric
Mind 3 as I spent £400 quid in Makro, 300 quid a new printer, Mincinglake watch out!
Day 21, three weeks ago I had the tonsil out, two weeks ago I had the neck dissection and wisdom tooth. Not worth celebrating! Let’s move on.
Today was good special thanks to Sarah and O for their help today, collectively helping with washing and lifts to dentist which happens to beside Makro helped me achieve my aims. I am now beginning to experience how older people get on in small villages without support, the answer they do not and they must feel so isolated. the West Country is full of lonely old people, came to Devon to retire, partner dies, no family local, too old to establish new circle of friends, stranded in a small town or village.
I have contacted a couple of volunteer organisations today, one of which will be a befriending organisation it is the least I can do.
I do feel a sense of loneliness, not through not having people around me or coming to visit, but the fight is very lonely. This was echoed in a documentary tonight by a 19 year old going through chemo therapy. I am fortunate that my regime is not the same, but I took away the sentiments of the doctors "It is the younger people you feel so guilty about, the ones you can treat, they have a chance and it is our job to ensure they are cured. They are the ones that keep me awake at night"
I have seen that look in my doctors eyes with me, I have seen their body language, the words they use are power words, treatment, all guns blazing, zapping, getting rid of, destroying, catching early, belt and braces, maximum doses, I owe to me and them to ensure that I win! Coming second is not an option I must win!
Kevin, called tonight, for those who do not this wonderful bloke, he has been a rock to me. Kevin is a staff nurse in the Oncology department at the RD&E hospital as well as being a bloody good Lib Dem Councillor. Kevin was on duty today and took a phone call today to book a Mr Nigel Gooding in for Chemo and Radiation therapy and the caller gave him my dates in a very matter of fact way. Kev if you are reading this I know how hard that call was to take and I know you had to take time out afterwards. Your a great bloke and this World needs more of you.
I find 7pm onwards very tiring, tonight is no exception however, it is clear that my normal avenues of de-stressing which involve exercise are not there at the moment because of my shoulder and neck. The cancer would be easier to cope with if I had full mobility and other areas of mind and body occupation need to be found, any suggestions?
Wednesday, June 08, 2005
Day 20 - Ouch
Mind 9 out of 10
Pain 8 out of 10, expected 9
No strawberries, one blueberry smoothie, 5 oranges
Short and sweet tonight it hurts big time, the pain in my shoulder is unbearable as the nerve endings tingle and try and heal. My shoulder feels like it is on fire. I collected the children from School and even the short walk was like walking on hot coals. Mentally I am very strong at the moment knowing that this is temporary pain but it still does not stop it from hurting!
I filled out a form today and my illness puts me in the disability bracket, now that is something hard to get my mind around.
Sorry it is short but I need to find a place for my shoulder to rest.
Keep attacking Nigel
Pain 8 out of 10, expected 9
No strawberries, one blueberry smoothie, 5 oranges
Short and sweet tonight it hurts big time, the pain in my shoulder is unbearable as the nerve endings tingle and try and heal. My shoulder feels like it is on fire. I collected the children from School and even the short walk was like walking on hot coals. Mentally I am very strong at the moment knowing that this is temporary pain but it still does not stop it from hurting!
I filled out a form today and my illness puts me in the disability bracket, now that is something hard to get my mind around.
Sorry it is short but I need to find a place for my shoulder to rest.
Keep attacking Nigel
Tuesday, June 07, 2005
Day 19 - A "Classic Day"
Pain = 3
Mind = Sound
Weight = 3 kg loss since operation
25 strawberries, one ice cream and "mans" problem solved by Natural Yoghart!
Betting = £55 up on the day
Homemade fantastic Mushroom soup for lunch
Today was a very quiet day, the highlights being making tea for the children and having a request played on classic fm lunchtime slot. My request was of course for the dedicated band of brothers in the Max Fac department and Otter ward at the Royal Devon & Exeter Hospital in Exeter.
My choice of music was Adagio of Spartacus, by Khactaturian. The music like most of all time favourites has a special place in my heart. For a start it was the theme tune from the Onedien Line whose first series was filmed in Exeter and the year above me at St Thomas High School played street urchins, wow it could of been my acting breakthrough :) The 2nd reason is that the music resonated around the delivery room when William was being born. Massive tears followed.
I forgot to tell you about a feeling that has occurred since my joint clinic of yesterday. To the normal person it is an irrational fear to me it is perfectly rational. When I left the room yesterday I shook Mr McCellans hand and said thank you staring him in the eyes. It was like leaving home and going to University. I was leaving his care, his department being handed over to the Oncology department. The man whose team had given me a chance were letting me go and putting my life in the hands of strangers. It may seem irrational but to me it was important. I do feel lost but can rest assured I am now in the hands of the cancer professionals and can sleep at night knowing I will make new friendships and bonds in this new World.
I have been pottering, very slowly and gently in my garden. I love gardening and although dressed up to protect myself from the sun I was able to pot my plants ready for the hot summer we are promised!
I was able with help of Sarah to change my bed clothes and hey the thought of clean sheets and a good nights sleep is pure bliss.
Keep attacking today has been good, thanks Sarah and Oprah for her "old wives remedy"
Mind = Sound
Weight = 3 kg loss since operation
25 strawberries, one ice cream and "mans" problem solved by Natural Yoghart!
Betting = £55 up on the day
Homemade fantastic Mushroom soup for lunch
Today was a very quiet day, the highlights being making tea for the children and having a request played on classic fm lunchtime slot. My request was of course for the dedicated band of brothers in the Max Fac department and Otter ward at the Royal Devon & Exeter Hospital in Exeter.
My choice of music was Adagio of Spartacus, by Khactaturian. The music like most of all time favourites has a special place in my heart. For a start it was the theme tune from the Onedien Line whose first series was filmed in Exeter and the year above me at St Thomas High School played street urchins, wow it could of been my acting breakthrough :) The 2nd reason is that the music resonated around the delivery room when William was being born. Massive tears followed.
I forgot to tell you about a feeling that has occurred since my joint clinic of yesterday. To the normal person it is an irrational fear to me it is perfectly rational. When I left the room yesterday I shook Mr McCellans hand and said thank you staring him in the eyes. It was like leaving home and going to University. I was leaving his care, his department being handed over to the Oncology department. The man whose team had given me a chance were letting me go and putting my life in the hands of strangers. It may seem irrational but to me it was important. I do feel lost but can rest assured I am now in the hands of the cancer professionals and can sleep at night knowing I will make new friendships and bonds in this new World.
I have been pottering, very slowly and gently in my garden. I love gardening and although dressed up to protect myself from the sun I was able to pot my plants ready for the hot summer we are promised!
I was able with help of Sarah to change my bed clothes and hey the thought of clean sheets and a good nights sleep is pure bliss.
Keep attacking today has been good, thanks Sarah and Oprah for her "old wives remedy"
Monday, June 06, 2005
Day 18 - Don't look back in anger
Pain - 5 0ut 0f 10
Mind - AM 8 out of 10 PM 3 out of 10
Chocolate digestives: 5
Tomatoes and Carrots juiced 12
Portions of ice cream and strawberries 1
Today was a day of anger, resentment and a final realisation that I have cancer. I was very lucky today to have the pleasure to go lunch with Nicola my dear friend - At the Anchor! I must admit to use an Oprah expression "Your rubbish" at keeping in touch with friends and people who mean lots to me, my family are a prime example. So Nicola sorry! Time for me to grow up.
Talking of growing up I went to the joint ENT/ORAL/CANCER clinic today. I sat in a waiting room with 15 other men and women who had or were in remission with cancer. I looked around and the sad fact was that I am 30 years younger than the next patient. Whilst in the waiting room I was greeted by nurses who treated me like an old mate, saying how well I looked and "ohh look at that neat scar" In fact it looks like a relief map of the Somme in 1916 but evidently that is a good sign. I felt angry inside looking around me at the old folk there. Not at them, but an illness that threatens to take away my life at such a relative young age. The anger manifested it when I got home by opening the balcony crying my eyes out and playing Coldplay "Yellow" as loud as I can. If anything happens to me can you all ensure my kids get to hear it. The clinic is a scrum down when consultants swap chairs, making statements, like we do not have your biopsy back from the neck dissection - eh yes you do the Doctor gave it to me on Friday. At this point you could see the rustling of paper and hey presto! In fact it is a good job I mentioned it because I was likely to have my right tonsil and neck radiated as well. It was clear that without reference to the notes "Oh but the one lymph gland they removed was big" yes we know that I deduced treatment methodology was a done deal before I entered that room and whatever the notes said I was getting both chambers.
Today, however an additional word was mentioned "Chemotherapy" This treatment struck me down I was not prepared for this. When you are in a meeting such as this, it is bit like being at then end of an interview you grasp on every word, every sentence, the way it is delivered to try and suck out additional information on your life your chances of survival. I walked out that meeting knowing on Monday I am getting my mask moulded for radiation, as you are aware you have to wear a protective mask for radiation and I start the planning sessions next week. This is for real, a mask with my own name on it.
The treatment will start ASAP. I will have 6 weeks radiation therapy with 3 sessions of chemo at the beginning middle and end, which will facilitate an overnight stay for the chemo. I left the meeting and called Kevin, Nurse Mitchell of the Oncology department who put my mind at rest as I had been tripped up in my research by chemo. It is real belt and braces traetment, the chemo will kill off any loose cancer cells that may have escaped into my body and in essence I am having the best opportunity to get rid of this and banish for a long time these horrid cells.
I was close to tears on the bus. I made the mistake of being on my own. The bus journey on the way home was a mixture of grief, anger and fear. I feeling I suspect I shall never witness again in my lifetime. Nigel, you have cancer, Nigel this could kill you, Nigel you will beat this.
Goodnight time for more "Yellow" anymore suggestions for a black day CD?
Mind - AM 8 out of 10 PM 3 out of 10
Chocolate digestives: 5
Tomatoes and Carrots juiced 12
Portions of ice cream and strawberries 1
Today was a day of anger, resentment and a final realisation that I have cancer. I was very lucky today to have the pleasure to go lunch with Nicola my dear friend - At the Anchor! I must admit to use an Oprah expression "Your rubbish" at keeping in touch with friends and people who mean lots to me, my family are a prime example. So Nicola sorry! Time for me to grow up.
Talking of growing up I went to the joint ENT/ORAL/CANCER clinic today. I sat in a waiting room with 15 other men and women who had or were in remission with cancer. I looked around and the sad fact was that I am 30 years younger than the next patient. Whilst in the waiting room I was greeted by nurses who treated me like an old mate, saying how well I looked and "ohh look at that neat scar" In fact it looks like a relief map of the Somme in 1916 but evidently that is a good sign. I felt angry inside looking around me at the old folk there. Not at them, but an illness that threatens to take away my life at such a relative young age. The anger manifested it when I got home by opening the balcony crying my eyes out and playing Coldplay "Yellow" as loud as I can. If anything happens to me can you all ensure my kids get to hear it. The clinic is a scrum down when consultants swap chairs, making statements, like we do not have your biopsy back from the neck dissection - eh yes you do the Doctor gave it to me on Friday. At this point you could see the rustling of paper and hey presto! In fact it is a good job I mentioned it because I was likely to have my right tonsil and neck radiated as well. It was clear that without reference to the notes "Oh but the one lymph gland they removed was big" yes we know that I deduced treatment methodology was a done deal before I entered that room and whatever the notes said I was getting both chambers.
Today, however an additional word was mentioned "Chemotherapy" This treatment struck me down I was not prepared for this. When you are in a meeting such as this, it is bit like being at then end of an interview you grasp on every word, every sentence, the way it is delivered to try and suck out additional information on your life your chances of survival. I walked out that meeting knowing on Monday I am getting my mask moulded for radiation, as you are aware you have to wear a protective mask for radiation and I start the planning sessions next week. This is for real, a mask with my own name on it.
The treatment will start ASAP. I will have 6 weeks radiation therapy with 3 sessions of chemo at the beginning middle and end, which will facilitate an overnight stay for the chemo. I left the meeting and called Kevin, Nurse Mitchell of the Oncology department who put my mind at rest as I had been tripped up in my research by chemo. It is real belt and braces traetment, the chemo will kill off any loose cancer cells that may have escaped into my body and in essence I am having the best opportunity to get rid of this and banish for a long time these horrid cells.
I was close to tears on the bus. I made the mistake of being on my own. The bus journey on the way home was a mixture of grief, anger and fear. I feeling I suspect I shall never witness again in my lifetime. Nigel, you have cancer, Nigel this could kill you, Nigel you will beat this.
Goodnight time for more "Yellow" anymore suggestions for a black day CD?
Sunday, June 05, 2005
Day 17 - A tough day
Mind: Sound
Body: Sore, painful and very tired
Bank account: £300 up after the Derby meeting
I would like to put your mind at rest. The lump/nodule found last night was a small saliva bubble that burst with a hour of me reporting it to the on call duty max fax Doctor at the hospital. I cannot tell you the mental anguish of finding the lump in my mouth. I sent for Sister Browning but by the time she arrived it had burst its contents into my mouth and receded into my gums.
I awoke at 1200 today in pain. The shock and effect of deep surgery has had an effect on my body that I could not imagine. As well as the surgery I have two other issues relating to the antibiotics and unpleasant side effects, which have had effects in the “mens” room of my body. I have felt very tired for the last 24 hours and must admit speaking is hard work as the jaw muscles start to become tired. I do not answer phone calls after 2000 now as it just becomes too difficult to talk.
My left shoulder, ear and side or head are still numb. The vast majority of pain arises from here. The pain is dull at times and then sharp like electricity shocks across my shoulders and through my neck.
I saw the children this afternoon for the first time since the operation and it brought a smile to my and their faces. We had prepared them for the scars, but after 30 seconds they were off doing their own things and playing in their 2nd home. I am so glad they reacted so well which means I can get back to seeing the two people who make life worth living for.
It is time for bed, sorry to those who are expecting witty comment and satire but it is kind of hard to draw energy at the moment, except eat, sleep and drink,
Keep attacking Nigel
Body: Sore, painful and very tired
Bank account: £300 up after the Derby meeting
I would like to put your mind at rest. The lump/nodule found last night was a small saliva bubble that burst with a hour of me reporting it to the on call duty max fax Doctor at the hospital. I cannot tell you the mental anguish of finding the lump in my mouth. I sent for Sister Browning but by the time she arrived it had burst its contents into my mouth and receded into my gums.
I awoke at 1200 today in pain. The shock and effect of deep surgery has had an effect on my body that I could not imagine. As well as the surgery I have two other issues relating to the antibiotics and unpleasant side effects, which have had effects in the “mens” room of my body. I have felt very tired for the last 24 hours and must admit speaking is hard work as the jaw muscles start to become tired. I do not answer phone calls after 2000 now as it just becomes too difficult to talk.
My left shoulder, ear and side or head are still numb. The vast majority of pain arises from here. The pain is dull at times and then sharp like electricity shocks across my shoulders and through my neck.
I saw the children this afternoon for the first time since the operation and it brought a smile to my and their faces. We had prepared them for the scars, but after 30 seconds they were off doing their own things and playing in their 2nd home. I am so glad they reacted so well which means I can get back to seeing the two people who make life worth living for.
It is time for bed, sorry to those who are expecting witty comment and satire but it is kind of hard to draw energy at the moment, except eat, sleep and drink,
Keep attacking Nigel
Saturday, June 04, 2005
Day 16 - Blind panic
I was having a good day, chilling out watching the Derby meeting when eating ice cream I felt inside my upper right gum and found a nodule (lump) transparent, about .5cm in size attached to the wall of my gums! It maybe be nothing, but the considering what has happened it most proberly something. I hope that it is not connected.
I am waiting the on call Oral Doctor to call me back, the emotional rollercoaster of my life is amazing, cruel and heartless.
N
I am waiting the on call Oral Doctor to call me back, the emotional rollercoaster of my life is amazing, cruel and heartless.
N
Friday, June 03, 2005
Friday update
I went to the outpaitents clinic today 2 bits of news. They may not seem huge in your lives but they are mega in mine!
Firstly, the removal was the patchwork quilt of staples were removed from neck and shoulder. Pictures above - before and after.
The 2nd which came out of the blue was that they had the biopsy results from the 32 lymph nodes, glands, muscles they removed Thursday week ago! The cancer was limited to the one lymph gland and had not spread out to the other 31 lymph nodes, muscles or tissue or the rest of my body. In essence by surgery they have removed both tumour and cancer in one hit and now the area is ready to be zapped by the radiation therapy.
I am no means clear, in remission or well but hey it is a better feeling today than at 0930 today.
Keep attacking its Derby day tomorrow!
Nigel
Day 15 - Very emotional day
Hello readers
This may sound letter from Starcross but I am struggling to sound like Alistair Cook more like Geoff Boycott as I have started to speak through the side of my mouth. This is more to do with the nerves in my mouth & face being weak and severed than a wish to be a wife beating professional Yorkshireman.
I had to cut the post short last night because the was too hard to bear.
Well this morning I am off to the Oral out patients department and hopefully get the rubber stamp on the surgery which is the last phase before I get handed over to the Oncology (Cancer) department. It feels very strange leaving the care of this fantastic department who professionalism and empathy are unrivalled in my short life time. I am sure I will shed a tear when I leave them.
I then have a counseling session at the FORCE centre in Exeter which I hope will be the start of me finally coming to terms with the fact that I have a cancer which has government led mortality figures attached to them!
Have a good day.
Hilary Roberts tips of the day yesterday would of lost you money as he proposed a double, his horses came in 1st/2nd, a single win bet of each horse would of meant that you would of broken even. We await with his tip of the day which much surely come from the Oaks meeting at Epsom.
Anyway keep attacking!
Nigel
This may sound letter from Starcross but I am struggling to sound like Alistair Cook more like Geoff Boycott as I have started to speak through the side of my mouth. This is more to do with the nerves in my mouth & face being weak and severed than a wish to be a wife beating professional Yorkshireman.
I had to cut the post short last night because the was too hard to bear.
Well this morning I am off to the Oral out patients department and hopefully get the rubber stamp on the surgery which is the last phase before I get handed over to the Oncology (Cancer) department. It feels very strange leaving the care of this fantastic department who professionalism and empathy are unrivalled in my short life time. I am sure I will shed a tear when I leave them.
I then have a counseling session at the FORCE centre in Exeter which I hope will be the start of me finally coming to terms with the fact that I have a cancer which has government led mortality figures attached to them!
Have a good day.
Hilary Roberts tips of the day yesterday would of lost you money as he proposed a double, his horses came in 1st/2nd, a single win bet of each horse would of meant that you would of broken even. We await with his tip of the day which much surely come from the Oaks meeting at Epsom.
Anyway keep attacking!
Nigel
Thursday, June 02, 2005
Day 14 - A good day
Day 14 and still positive. The 10 hour sleep helped but the contoursions in bed I have to perform to get comfortable I am sure would mean an entry in the karma sutra!
I can honestly say for the vast majority of today I did nothing, slept, ate healthily as I always do, read, watched, listened and chilled to my relaxation tape.
I must admit there were 2 events today which made me feel human and wanted, both BattyPat and Sarah showed concern when I failed to answer my phone and text messages. Those who know my house it is three stories high and it is not always easy to get to the phone in time. It made me feel wanted and human people do care about me and would be concerned if anything happened to me. It was certainly amazing to see the 2 most influential women in my life saying are you there.
I am just pausing typing. I have just had extreme pain in the region of the extracted wisdom tooth,wow that hurts, it has radiated down into my neck area and is causing me great pain.
That is better . As the drugs wear off the pain is more intense, sharper, and pointed. The pain has been constant all day and although the pain killers are helping it is hard to control it all. You need to find somewhere to hide and curl up. There biggest area of pain is around the ears, jaws and at the back of my neck, the frontal cut lines are subtle whereas the back of my head is full on pain.
I had a big smiley evening as Councillor Mitchell attended the house to clean out the fish tank(He is well known for his use of pipes and buckets) and Oprah of Powderham Saw Mill fame, both managed to keep us all in laughter all night and went away well fed in payment for menial chores and no need to buy a "toptastic" shed in the bargain.
Sorry it is too painful too type.
Keep attacking Nigel
I can honestly say for the vast majority of today I did nothing, slept, ate healthily as I always do, read, watched, listened and chilled to my relaxation tape.
I must admit there were 2 events today which made me feel human and wanted, both BattyPat and Sarah showed concern when I failed to answer my phone and text messages. Those who know my house it is three stories high and it is not always easy to get to the phone in time. It made me feel wanted and human people do care about me and would be concerned if anything happened to me. It was certainly amazing to see the 2 most influential women in my life saying are you there.
I am just pausing typing. I have just had extreme pain in the region of the extracted wisdom tooth,wow that hurts, it has radiated down into my neck area and is causing me great pain.
That is better . As the drugs wear off the pain is more intense, sharper, and pointed. The pain has been constant all day and although the pain killers are helping it is hard to control it all. You need to find somewhere to hide and curl up. There biggest area of pain is around the ears, jaws and at the back of my neck, the frontal cut lines are subtle whereas the back of my head is full on pain.
I had a big smiley evening as Councillor Mitchell attended the house to clean out the fish tank(He is well known for his use of pipes and buckets) and Oprah of Powderham Saw Mill fame, both managed to keep us all in laughter all night and went away well fed in payment for menial chores and no need to buy a "toptastic" shed in the bargain.
Sorry it is too painful too type.
Keep attacking Nigel
Wednesday, June 01, 2005
We band of brothers !
You dear friends this is for us: You are my band of brothers: I love you dear friends.
We few, we happy few, we band of brothers; For he to-day that sheds his blood with me Shall be my brother;
King Henry V > Act IV, scene III
We few, we happy few, we band of brothers; For he to-day that sheds his blood with me Shall be my brother;
King Henry V > Act IV, scene III
Day 13, Day 2 at home
Wow what a bruise this dragon slaying is harder than I think! My face is cover in a real shiner and my neckline is an attractive blue/yellow. Today was a good day chillin at home, no guests, daytime radio, TV and my CDs I did have to play one CD very loud during a very black moment today but "Yellow" by Coldplay at full volume made me smile, shout and sing.
On a more serious note I have moved steps closer to getting help, on Friday I have an outpaitants appointment and then a counselling session with FORCE moving each day towards the words "one year in remission" I have to deal with lots of issues like medium term work and mental stimulation so any ideas would be very welcome?
A short post today, but off for a bath and see if I can conjure anymore fantastic dreams :)
Keep attacking!
Nigel
On a more serious note I have moved steps closer to getting help, on Friday I have an outpaitants appointment and then a counselling session with FORCE moving each day towards the words "one year in remission" I have to deal with lots of issues like medium term work and mental stimulation so any ideas would be very welcome?
A short post today, but off for a bath and see if I can conjure anymore fantastic dreams :)
Keep attacking!
Nigel
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