Friday, September 30, 2005

Day 43/44 More remission

Its been a strange week with the events of Monday fresh in my mind, and things definately healing at more rapid rate than previous weeks. Ok my mouth is still playing up and my favourite tounge ulcer is a real bind despite the lotions and potions.

At some stage I must accept life has moved on from those terrible days of the summer and life has a future. I go to London next week with a hint of trepidation, I bought a new suitcase today, not because I wanted to take more clothes but to take all the lotions and potion with me. I must admit I have booked a comfy hotel and now that I am eating as normal as I can under the circumtances and feel I will manage.

Wednesday, September 28, 2005

Day 41/42 - Remission

It is 6 weeks since treatment finished and yesterday someone told me "remember your in remission" Remission is such a vauge word but it means well you maybe cancer free now all your treatment has finished, but we do not know yet.

The fear of the unknown has not stopped me feeling the best I have felt for 7 months. Internally I feel fine, lots of energy eating well, and I suppose wanting to get on with my life. The mouth sores are under control will various potions, hurting ocassionally at the end of the day but the pain is certainly reducing.

I have for the last 2 days noticed a distinct change in my life, very similar to right I can now start planning 3/4 months hence. When you are going through treatment there is no time or will to plan for the future because you have no idea how you may feel or what appointment you have to fufil, now that channel is clear and life has taken a more appropiate form.

Life still amuses me like yesterday the man who called me and told me that he had viewing my website and wanted some advice. I assumed it was cancer advice, but no he said: " I have been viewing your site and can you give me any information on callouses on the knee as I injured my knee walking in the Bulgarian mountains" At first I thought it was a joke, or some sort of code"we have been walking in the Bulgarian mountains" alas he was deadly serious, so I packed him on his way with plenty of rest and daily asprins :)

In reading an article written by John Diamond for the Guardian before he died he summed up my thoughts about the future and life:
This is what it's all about. It's about reading a paper on a Sunday morning while you're thinking about whether you can be arsed to go to the neighbours' New Year's Eve party tonight. It's about getting angry with me for having different opinions from yours or not expressing the ones you have as well as you would have expressed them. It's about the breakfast you've just had and the dinner you're going to have. It's about the random acts of kindness which still, magically, preponderate over acts of incivility or nastiness. It's about rereading Great Expectations and about who's going to win the 3.30 at Haydock Park. It's about being able to watch old episodes of Frasier on satellite TV whenever we want, having the choice of three dozen breakfast cereals and seven brands of virgin olive oil at Sainsbury's. It's about loving and being loved, about doing the right thing, about one day being missed when we're gone.

And that's all it's about. It isn't about heaven and hell or the love of Christ or Allah or Yahveh because even if those things do exist, they don't have to exist for us to get on with it.

It is, above all I suppose, about passing time. And the only thing I know that you don't is that time passes at the same rate and in much the same way whether you're going to live to 48 or 148. Why am I happy? Because I'm alive. And the simple answer to the question 'What the hell is the point of it all' is this is the point of it all. You aren't happy? Yes you are: this, here, now, is what happiness is. Enjoy it.

Monday, September 26, 2005

Day 40 - Joint head and neck clinic

I promised to update you and boy what a relief. The feedback from this afternoon's joint head and clinic was;

I quote the consultants "the Max Fax Consultant said everything looked good mouth and tonsil, and progressing as we would of hoped, the chemo and radiotherapy consultant is happy to way the treatment went" come back in a month, we will arrange a scan for 3 months time.

Good news indeed, you can imagine the sigh of relief I am feeling. The scan is the all important indicator but we will have to wait a few months to make that judgement.


Sunday, September 25, 2005

Day 39 - Tomorrow

I set the alarm early as William and Ellen now have swimming lessons on Sunday mornings, fine in summer but what happens when its cold in Winter?

I spent the day dreaming, tomorrow afternoon I have my 1st joint head and neck clinic, it is the joint clinic where the oncologists, ENT, and Maxfax consultants assess their work and my treatment. I am sure the scope will go down my nose into my throat and a poke around will take place. I am sure there will be prodding, pointing, and saying ahhh a lot and hopefully I can get a third opinion on my mouth ulcers.

It iss early days yet but they will be able to view the tonsil area and look at other signs whether the treatment has been sucessful. There is one word I will not hear tomorrow or perhaps ever, and that is cured. I will of course let you know how it goes :)

It is a known fact that 33% of patients, 1 in 3 have a 2nd cancer within 2 years. That is a massive figure and one that ways on your mind. You just live with the view that I am in the 67 not the 33 out of an hundred and it does not seem so bad.

Saturday, September 24, 2005

Day 38 - Children

I would like to thank my good friend Jan and her two year old daughter, Tallia for the great time we had at her party today. It was the first opportunity I had since May to have both children stay with me overnight, and too be honest I was very scared that I may not be able to cope and take on too much.

The party enabled the children to let off steam in a controlled relaxed enviornment they had great fun and so did I. I was able to relax and scoff all sorts of rubbish which included skips and chocolate biscuits!

I felt very emotional being with my children. Life is terminal event, but I have realised over the past 6 months that my purpose in life is to impart love and affection to my children in the time that I am here, whether that is a few years, ten, twenty or more my purpose in life will be to ensure I give my children maximum love and attention.

Cancer makes you refocus your life and sort priorities out. It gives you time to face yourself and say what do I really want out of this fragile life, a life which still has years to run if I have my way.

Day 33/34/35 Holiday views

I must admit I have always thought of South Wales as an industrial bomb site, mainly through my time there in the 1980's and 1990's however I must admit the Black Mountains and the Brecon Beacons are a wonderful part of the World.

If you add in Hay on Wye, Brecon, and the great woodland drives the countryside the place has a powerful beauty. The hills opps sorry mountains are stunning they are powerful and massive they show the carving out done millions of years ago in all their beauty.

I was not strong enough this year to walk them but next year I will be strong enough to march along the huge plateaus and admire the views.

We were lucky with the weather, warm and indian summer and I was well looked after by battypat and Ron.

I enjoyed the time away it gave me time away to comtemplate lots of things, life, me, my illness and my plight. Life deals us many challenges and I see cancer as just that, the tounge sores are a by product of my treatment, and boy did they make themselves known this week. It was the end of the day when they made their real impact, the pain was unbearable and two nights I reached for the morphine to help me sleep. I must admit the break did me good and left me relaxed and mellow.

I had time to think about me. I am angry, why me, why now, if only I had 10 more years before having to deal with this dreadful illness my children would of been young adults and I do not have live with this fear for the next 10 years. I have read accounts of oral cancer patients who say in 6 to 12 months time you feel that the treatment and cancer was like flu and you look back and think wow I am glad to be alive. I count the days off until that day.

Monday, September 19, 2005

Day 32 - Holiday pains

I am painfully aware that life is a terminal illness. Life is not an infinite span of time we have here but a small snapshot of life, which needs to be lived and seized with both hands. On Sunday afternoon I thought my time had come. One thing I am starkly annoyed at about cancer is that before May I always filled out those medical questionnaires saying, no and nothing in my medical past. I always wanted some sort of choice when I went in 30 plus years time, but not to have to face my own mortality in such a short scale of time.

On Sunday afternoon I was driving my beloved Lizzie to Pandy, a small campsite nestled in the Welsh Black Mountains, close to Abergervenny. After 90 minutes I had reached Bristol. I was aware that I had stomach pains, which I put down to indigestion. I went over the new bridge into Wales and realised that my whole upper body was wracked with pain, my back was tight, and my stomach muscles, what is left of them had gone firm and there was a stabbing pain in my back. I managed to get to Magor services on the M4.

I really thought my time had come, I was alone in the lorry park of a bland M4 car park, my body was shivering and the muscles tightened. I worked out I was not having heart attack or stroke as the pain was restricted to my below my chest, however the stomach cramps increased. I thought is this cancer inside I did not know about. Its normal to think every minor illness is serious now, despite the fact its not connected. I found some morphine and most proberly had too much but within 20 minutes the pain had subsided and it was clear that I would not be ending my short life in an M4 car park. Of all the places to go an M4 service station!

It is clear that the pain was muscular, bent over and driving a van with no powered steering. I had done too much. I should have done the journey over 2 days or 2 stages I pushed my tired weak body to the limits. I arrived relieved to see Ron & Pat and the dogs and the pain melted away.

The night was quiet and relaxed, in fact I needed to rest and you can imagine when I hit the pillow I slept soundly will not ill effects from my traumatic experience. An experience, which I will not be repeating!

Monday 19th September 2005

I slept well there is something very therapeutic about camping, listening to owls as you snooze, the turmoil of the last few weeks sleep forgotten as I slept, only to wake at 6am on my body clock hour. I was able to snooze until 0730 ish when my book took over.

I am reading the girl in the red coat by Roma Ligocka. Roma was jewish, five and lived with her family during the 2nd World War in the Krackow getho. The book is a history of her childhood avoiding detection by the Germans whilst struggling to survive in the most degrading and awful circumstances. The book is one of those you cannot put down once you pick it up. The book makes you realise that perhaps things are not so bad when you consider what children went through during those terrible days. Living in constant fear of death at the hands of the Nazi death machine.

Saturday, September 17, 2005

Day 31 - We are all tired

I eventually got up from bed at 1000 this morning a record for me in recent weeks this after falling asleep at 2300 waking up at 0630 and snoozing until 0800, which is unheard of. It was clear that my trip to London had tired me out, but I was not the only the children came round and it was clear that they were suffering from the first week back at school so as you can imagine it got all tired and emotional!

The camper van is packed and stocked up with food and ready to roll for a few days away in the Welsh borders. It is my first holiday this year I had a holiday booked in Eygpt the week the lump was discovered but a CT scan was booked so I had to cancel.

I have been feeling uncomfortable all day primarly due to the state of my mouth ulcers, avioding talking help and I am able to put my tounge in a comfortable position, but boy it hurts when eating certain foods as you can imagine.

Im off to plan my route the chances of the camper getting there in one piece would be good odds at the bookies.


Friday, September 16, 2005

Day 30 - London calling

Look I know you are going to think I am mad, sad or bad but today I went to London.

I spent most of last night in panic worried about whether I would survive the day. I packed my rucksack with a handful of high energy and calorie medical drinks, bananas I had this thought that I would be stranded in the biggest City in the UK without the ability to find something I could possibly eat.

Mentally I was very nervous, but for the record I catch a local service to Exeter from Starcross then the 2 hour fast train to London. I worked out that if I played things right the maximum walking would be limited to stations and everything could be done by taxi. It all worked well until I got to Exeter meeting an old friend John Milton, John is in his mid 40s never smoked, does not drink and told me he is recovering from a stroke.

I sat there talking about life, inspiration and my sore tongue disappeared into insignificance as we both discussed the life changes we will make as a result of our illnesses.

It was good to back in the Lambeth fold, there was genuine concern in people eyes for me not sympathy but joy to see me back and starting to get back on form. The energy levels were good as I had paced myself and my fear of my brain being on form and up to work was soon put too the test. 2 hours of meetings and I was done, acquitted myself well and was able to get my points across and understood even with my slight lisp.

I returned to Waterloo where there is a through train to Starcross. I scoured the concourse but was unable to find an outlet that served soup. I panicked, would my ensure drink with its 330 calories and a piece of fruit get me through the afternoon? Then I thought sandwich, but my brain said pointless I would not be able to eat the bed it would be too dry. Then it came to me what if I choose a moist filling, egg Mayo, prawn Mayo, tuna Mayo, alas in my haste I ended up with salmon and cucumber on brown! I bought some water and thought I am determined to get this down and use all the water I did. Well I am pleased to say it maybe only a sarnie but it took me 20 minutes to eat the contents, excluding the crusts, but managing the bread. It was the 1st sandwich for 2 months I had eaten but meant that in the outside World I now know I can eat sarnies, preferably wet ones! It was a big step and one I was very proud of.

I returned home at 1800, 11 hours after I left, tired, happy and to be honest pleased I did today, tomorrow will tell whether I have overdone it I hope not.

Thursday, September 15, 2005

Day 29 - It is all relative

Feeling better these days is all relative whilst I amy look better, face less swollen, statue correcting itself, skin healthy, 10 kgs lighter I can assure you that my mouth is bloody uncomfortable.

The one bug that is plauging my recovery is a mouth sore/ulcer it was checked out last week so it is nothing sinister. The are a by product of chemotheraphy and radiotheraphy where the body cannot produce enough saliva to protect the mouth and repair the damage. Natural defences missing the RT has zapped my mouth and it takes time for the damage to repair, mild painkillers help but the sore on my tounge is just on the left jaw bone and affects speech eating and speech.

I can speak, its not painful just uncomfortable at times, a small price to pay I suppose to beating this dreaful disease.

As I get better one question looms in my head, why? I was so aware of health issues relating to heart, keeping fit etc I want to try and pin the reason for the cancer down to one reason. One tangible issue that I can prevent in my life from now on. It is hard because no one knows the reason, there is no reason at present I can only deduce that I sit in the 25% of people who do not smoke and got unlucky. I can cut out the 2 main causes of mouth cancer smoking and excessive drinking, and to be honest my attitude to smoke has always been abhorent, my attitude to drink is moderation, sensible approach and when you are ready your mental attitude will change.

My love of wine has finished, the tatse will leave burns on my throat, it looks like the only alcohol left that will go down nice is smooth beer such as Caffereys or Guniness wow life will be so hard!

Wednesday, September 14, 2005

Day 28 - Reflections

Its day 28, one month ago radiotherapy finished, the induction of pain ended and recovery began.

I remember that last session, I was in hospital feeling pain, finding it difficult to eat, sleep, and drink, talking was hard and my body had been through hell. My mind was confused, would the pain all stop tomorrow because of the therapy was over alas no came the soothing responses of empathtic nurses looking into my eyes. I was attached to a syringe driver, a nasal tube and pain was high until the morphine cut and stopped the pain taking over my weakened body. I looked ill, people could tell then man had cancer and was unwell. My body was frail and the weeks of inactivity had made me weak. I had nasal drip and it made me cough up blood everynight and my mouth was full of mucus and a thick horrid phlegm. My bed clothes would show tale tell signs of large patches of fluid dribble through the night as my mouth dried out.

The skin where I had radiotheraphy burns was purple, and the skin has worn away, I was left with patches of raw skin which dressing would stick too and sympathetic nurses would change my dressings everyday.

One month on, I am sleeping, at least 6/7 hours passes my body each night. I can eat, soft foods only, but back in control of my own destiny in the kitchen. The only pain I face is through talking because of a radiation mouth sore which is going. The tubes and syringe driver are gone as is the morphine. The look in my face is of being content and my eyes no longer have that zombie look. My body is beginning to find a definition and walking is now becoming easier as distance increases. The nasal drip that would create so many problems is gone. I can swallow without bringing drinks back up and the saliva in my mouth is returning and the night dribble has gone. The morphine has gone and so as the anti sickness medication. I feel stronger everyday and able to lift, walk, laugh and yawn without feeling guilty, weak or in pain. The mucus has gone replaced by saliva. I no longer count off days and look forward to return to normality because I know I am on my way already.

My skin has healed and now I have a gentle pink halo when once broken purple skin exisited.

I know I am not fully over the side effects of chemo or radiotherapy but what I do know is that I am 100% better than I was this time last month, and this time next month will 100% further on. The mouth sores which are a side effect give me constant pain and trouble my eating and general well being including talking!

On the 26th September 2005 is my next big day, the joint head and neck clinic where I find out just how well the treatment has gone, its a day I am looking forward to as I know I have made progress and I know the treatment has worked!

Have a great day

Tuesday, September 13, 2005

Day 27 - Ellen and her first day at school

I have just returned from Exminster and taking Ellen my just 4 year old daughter to school for the 1st time.

For those of you who do not have children it may seem a small moment, but to those who who have children it marks a progression in their lives and those of their parents.

Dressed in her school uniform, handing her over to a complete stranger she who you just met 24 hours earlier and ready to grow up at just 4 it makes you emotional.

I wanted to cry, my emotions were running high in the classroom, the torment of 5 months took me back to the moment when I cried when she was born. When I was lying in the hospital bed you would not imagine days like today. Special days, days when you cannot turn back the clock. They are captured forever on film and in my brain.

People are the most important thing in the World, my life has changed.

I love my children, love my job, love my life, and beginning to love me, why has it taken 41 years to realise?

Day 26, 21 days before normaility hits me - More cricket!

Obviusly I was glued to the TV as the England team ground their way to a great Ashes victory. The day was fairly bland as is most of my food.

Eating is a chore, an exercise to ensure I get 2500 calories a day, add in 80 grams of protein and whatever I eat the exercise is purely one of calorie build. My weight is stable and I am working out what I can eat at the moment and what I cannot. Some food tastes normal, then 2 tastes later becomes bland and horrid, I have to forget food that is dry and concentrate on creamy sauces to accompany anything like pasta, but it goes down slowly. Eating is not fun at the moment, but life is, so eat boy, eat and look forward to your next protein full, calorifc fix of blended fun :)

The camper van has gone off to the garage after her MOT she has developed an untimely itch of cutting out every as you are driving along, sort of when she gets hot and bothered, not bad for an old girl by her. If I am honest she has been like it since I have had her but I have been to lazy to sort it, how things have changed. However, a clean bill of health before next weeks trip to Wales will be a tonic and safe in the knowledge that I will not seeking the help of the AA to get me home!

Must dash as its Ellen's first day at school today and of course I want to be there, and at her last day of school as well. I have to pick her up at lunchtime today and have an afternoon of looking after her, what a tonic when you consider what I have been through.

Keep attacking Nigel

Sunday, September 11, 2005

Day 24 - Cricket!

The whole country has gone cricket mad, it does help but I am quite fond of cricket and certainly beats buying a French cottage or a grandfather clock, but this is the last time I am likely to watch a series due to life moving on and lack of SKY TV.

Some weeks ago I told you ago about Horses, big swinging heads ridden by diddy men jockeys and ladies wearing fruit stalls on their heads. Well I was very pleased when BBC lost the rights to channel 4. For years I resented horse racing, Richie Benaud would be summing up the match situation you could tell when his Auzzie strains were just about to disappoint you. You would cringe when you heard him him saying, now with "England needing 7 runs to win and one wicket its over to Goodwood for the 3.15"

If you were lucky you could try and scramble your wireless to long wave, hidden amongst French radio and 1960s radio stations somewhere off the Azores. Once again we are faced with tiny Irishmen, a paddock full of women with fruit and veg stalls on their head and identical snorting horsey beasts looking for their next pray. Of course the very posh commentator trying to distinguish whose in the paddock and which beast is which. You would be lucky to see the race and work out the winner. Then back over to Richie by which time the man of the match presentations are over and Richie is bidding you farewell and we are in for an afternoon of racing or Western films. That is why I was pleased when Channel 4 won the TV rights, but bugger what happens they start to show bloody racing on Saturdays with John McCarrick, England's answer to a human windmill! Least Rupert will not be mixing and matching Cricket and Racing! Well lets hope, pass me the SKY application form.

On a personal front I had both children over yesterday for the 1st time since May. Now when they went I thought it was stressful, but then my good friend Jan asked me was it stressful before? I said stressful and hard work yes, so no different! It was clear however that they have grown up, they fought like cat and mouse but they are six months older than when it all started. Yesterday proved to me that returning closer to them is the right thing to do, the time on this earth is short and I hope am only half way through my life. Cancer gives you a different perspective on life, makes you stronger as a person, makes you more relaxed about little things, but alas makes you stressed about your health. I had to shout at William yesterday which was not a good idea as it hurt my vocal chords, put me back a few days.

My throat is getting better everyday but my vocal chords are very sore, talking for long periods needs lots of water I have managed to stay off the pain killers for the time being.

Eating is becoming fun, thicker creamy soups are going down well, scrambled eggs, milky weetabixs, real proper juices go down well and give me lots of positive vitamins. I need to get the soups to include meat and fish now to build up protein. My return to normality is governed by 4 things: Tiredness, this is being taken care of as my body now seems to be getting what I need and do not seem to be overtired, maybe because the body is not working enough, but we will soon see, Energy levels, If I am able to eat 2500 calories a day then my energy levels are fine. Food intake It is important that I am able to get food external of my house outside of here, and with numerous soft options available. Some people have tackled solid food before me but we have to remember for the last 5 months my mouth has been through a hell of journey. Pain My pain is under control at the moment and no painkillers are required. My mouth is dry and water is a must and constant mouth washing and watering will be required for some months to come.

I have posted that in 22 days I will return to work taking it very easy, no more long hours, no more burning the candle at both ends, more comfortable hotels and earlier nights. The first month working from home 2 days a week will give me a gradual introduction to work, but boy it will be good to get back to some normality. I will review this nearer the date but its good to set a goal.

Right off to Wincanton! Speak soon Nigel x

PS: I may venture out next week to a pub for a bite to eat, just soup or something soft, a big step at this stage returning back to normality!

Saturday, September 10, 2005

Day 23 - Hospital outcomes

Well day 23 after RT was a quiet one mainly through my failed attempts to sleep and my mind wandering. The trouble with things at the moment is my mind is back 100% although my body is not. They seem disjointed and on 2 different shelves.

I had a counselling session to deal with this and it was clear that I have moved on quite a considerable way.

In my body I know I am not as strong as I was and now building up strength through exercise. After my walking, I managed a 15 minute bike ride to Powderham Church and back and boy it was tough but had a huge sense of achievement afterwards. Tomorrow it will be 20 minutes, and today I will walk 1.1 miles or as its raining cycle that on the exercise bike that hides in my shed. Living in a three story hosue has its advantages as well as the stairs give me good step up regimes.

The hospital outcomes for my first check up showed good signs of recovery, shoulder and neck strong, mouth and teeth fine and generally diet ok despiet my reservations at first weight is stable and everyone is happy with what I am eating.

Eating is starting to become less of a chore, I have to put aside time to eat. time to prepare food, it has to be not too lumpy and not too solid but have managed a lasange yesterday all of 500 plus calories and numerous bits of protein. My diet needs protein at the moment so full fat milk, smoothies, ice creams etc are the norm.

I look forward to the day when I can eat a pasty or consume some toast, eat some chips or even bit an apple and get my mouth back into full action. It wil come when the slavia glands start working again so that food can be propelled to the back of my throat into my expectant tummy.

I watch TV and see people eating meals and feel like shouting stop it you are torturing me but I know its only temporary one day soon it will all fall into place and solid food will replace the slushy diet. Do not get me wrong the slushy diet is fine and gives me everything I need, but it takes 3 mins to make and 3 mins to eat quickly.

However, home made soups are really the answer and lunchtime means a homemade carrot soup for me.

Right the cricket is on time to get real, I think the country is cricket mad!

Thursday, September 08, 2005

I am not scared to ask for help here it is!

A lot of people have said if there is anything you want just yell.

Well very soon (Oct/Nov) when I move I wil need help packing, even if you could spare an hour to pack a few boxes for me I would be forever grateful!


Day 22 - Hospial visit

I am delighted to say that my hospital visit today went very well. We discussed the issues around tiredness, fitness, diet, and weight and its all gone well. I now have some sleeping remedy called nytol. It was locked in the cupboard so they must be powerful, the chemist quized me like I was some drugs baron and seeing wether they would mix with the other stuff I have been throwing inside my body.

I wanted to go home and take one but the fear of an early night and waking up at 2am buzzing stopped me. Its the first time in my life I am counting down the hours and awaiting going to bed, I really hope they work as to be honest I have not really slept since finding my lump on the 17th March 2005 imagine the exhaustion :(

Day 20/21

As you get better you want to do more but it is catch 22 more exercise, more tired, more exercise more calories you burn. But getting on the scales this morning I was fairly fixed on 80kgs some where I have been for nearly 2 weeks.

I have read Bob Champions book and of course followed the plight of Lance Armstrong but I am aware of a healthy recovery needs good diet, which I now have, rest and recovery which I have the rest but sleep is still disturbed I suppose it will for a time, and exercise.

I decided yesterday to start walking again, a mile one day, mile and one tenth the next, one two tenths the day after. The whole aim to reduce stress, reduce time spent at home chilling, but putting it towards a good exercise regime. I will listen to my body, but my body is telling me you are getting better, but beware not to overdo.

So today I have walked 1.02 miles in 26 mins, stopping only twice to read things and over 2500 steps. I feel very proud of myself. In essence it is no more than I use to do but the time I get back to work in 25 days time I will hopefully up to 3 miles day. More than I ever use to do in a day to be honest at work.

I am no Lance Armstrong or Bob Champion but both of them showed early return to physical exercise was certainly mentally stimulating and stress relieving enough to help recovery. When I was running the endorphins realised were awesome and made me sleep for hours, one thing I would bag for at the moment is 6 hours sleep.

One of the things I find hard at the moment is the pain of people saying you look well, my voice gets croaky after talking too much later in the day and lethargy does close in, but that's what I want to help me sleep. My body is playing a trick at the mo in bed, when I drift off to sleep, a tickly cough appears, causing mayhem, so when I relaxed my body rebels! Although I find myself more laid back about day to day events than I ever was and clear that I have lost some of the stress before.

I am very excited about 2 new things in my life, one is a new house, madness I hear you cry the other is I am going on holiday! Yes a new house, well it is hard to explain but living in a fantastic rented house with great views is fairly awesome but its not secure as the owners could sell at anytime. The other benefit is that I will be closer to my children and of course in 6 weeks time I will be much better, fitter and sounder in mind with more of my life back. I suppose its about life changes I love my job and have no intention of giving up but the short time I have with my children at weekends its important to make the most of the time I have. In addition its mine a root, the long term survival rates for these things are good and with a settled life style things will be much calmer and cheaper!

I have booked to go away on holiday to Wales the week after next, normal holidays are out of the question because of my diet for a few months but one in the new improved camper are not. I have booked 5 nights away in the camper van and on the same site as my sister for the safety net I am sure I will not need but crucial support just in case. Its my first proper holiday for a while, and one week before my joint head and neck clinic when I will know whether things were a success. I am sure they will be. I have a yearning for my van to me she is normality and I like normality!

Tuesday, September 06, 2005

Day 19 -The tube is out

It is out!

The NG TUbe, commonly known as the nasal gastric tube which ran through my nose into my tummy and sustained me all these weeks whilst my wrecked throat was unable to take food.

For the last 24 hours it was moving like a third being in my tummy, a bout of sickness displaced my tube inside. I was in agony, a quick call to Kevin who advisedd that I could just pull it out or get someone else to do it. now Oprah was here on hand looking like she was the girl for the job, ex farmers daughter however she did not fancy the yank and after a quick phone call to the out of hours surgery at the Hospital saw us enroute to convince a doctor to pull it out.

That was a trial telling them that I want it out, I can and have an Outpaitants on Thursday where the tube was coming out anyway, and no refrence to my notes was necessary all I needed was a yank. I was obliged by an on call Doctor who laid me back and pulled, and boy was it a scarely tingly experience having that pulled out. After all there was nearly a metre of cord and cable, although all plastic still very ticklish.

It left me feeling a little scared and knowing that food will be become more of an issue in the next 7 days as my throat heals. I have to ensure I take in teh protein and vitamins to aid recovery which is not easy when your food intake is limited to 35% of the total food market place. But hey I now have normality in my life no tube and just my life skills to depend on so we will soon see how I progress. I am keeping my fingers crossed but I have come this far and backwards is not an option as I comptemplate more cream laden bannana smoothies!

Nigel x

Monday, September 05, 2005

Day 16/17/18 Reality

I had have a huge dose of reality in the last 48 hours, mainly I am getting better depsite a nagging little cold and secondly that in the next few weeks my life will continued as before if not stronger mentally and wiser.

For the last 24 hours I have had my son stay William, it was the dose of reality I needed to say hey Mister your alive, your not going to die, your going to be back on your feet pretty soon. On a personal level although feeling a little drained and tired,(nights are still a bind as the mouth and throat conspire to fuck each other up and leave me the victim grappling around for some comfort, daytimes are fine.

I had the syringe driver out this morning the last of the morphine and anti sickness, it has been more of an emotional crutch but boy bathtime and showertime will be so special.

Like my children who last night lying on my bed relaxed fro the 1st time in weeks with Will in the house how lucky I am, how lucky to have a great job, great future, great friends, great kids and a body which has fended off everything that has been thrown at it this summer. I want the tube gone but know I need to get everything right before I take the step of having it taken back out. It is a pain but also has been a life saver for me and Thursday this week will be D Day for the tube!

I wish I could sleep more during the night but realise 33 sessions of RT plus the neck operation have asked some pretty serious questions of that it will soon all fall into place as long as I relax, chill and smile :)


Friday, September 02, 2005

Day 15 - Medical update

Well unsprisingly I turned up at 1000 am for my post radiotherapy review only to find the person who was due to see me on holiday. No big deal but my dear friend had volunteered to take me and she had taken time off work so the clock was ticking.

Eventually Dr Sheriff saved the day just like those in all the Westerns I had been watching and saw me at the last minute. Well the bottomline is everything is going well, people say I am looking good, better each day and sounding better. It is not easy at the moment as I convinced I am fighting a chest infection not made easy by a nasal tube and a runny nose from that area.

I have been able to juice up melon juice now and eating ice cream and custard at the moment which is another good sign and my voice is coming back to its old self, even with a slight slur, but hey just like the old days. The tube I a bind but important for getting the feed and vitamins into me that the food cannot at the moment. The whole eating thing is very frightening but slowly eating soft food will get back into the swing and taking those 2500 calories a day that I need. The good news is I have been told I hope to have the tube out next week a milestone I cannot wait for :)

Thursday, September 01, 2005

What is a co-parent

Ok a co-parent is a parent who plays an active part in your children's welfare, upbringing and life without playing the partner role to the mother of your children.

In essence I have joint responsibility to my children and play a very active part in their well being without living in the same house as their mum. Whilst many fathers are active, my involvement is not just around set times but playing a full role in decision making for their future.

Hope this helps.

Day 14 after treatment

I decided to be positive and change my counter away from the negative count up of days found having cancer to days after radiotherapy finished. It seems more logical now I am recovering and moving forward with my health.

Today is my 1st RT out patient appointment at the hospital I am not sure how intensive this will be but would of though just be a check up of things and how thing are getting on. I think it is too early to hear "cancer gone" but lets hope I hear words such as treatment went well and your doing very well, I need praise at the moment if only to keep me going. Side effects can last anything between 3 - 6 weeks after treatment so need to get use to feeling as I do for a few more weeks. Boy its hard but must keep smiling and attacking! Talk to you later after my appointment.

Nigel x