Tuesday, May 31, 2005
The surgery was very harsh. In a neck dissection there are 4 stages or quarters, I had the “full monty”
I had a long conversation with Aidan who is one of the Maxifac registrars at the RD&E Hospital. He shares my love of London eating and we have over the past few weeks shared views on the best food and restaurants in Town. He was honest, professional as all his colleagues have been.
I can honestly say the Maxfac team at the hospital are fantastic I have grown to know each Doctor and Nurse who in their own way and I respect the years on training as joint Doctors and Dentists but most of all their human caring professional face. They have pulled no punches during the last 12 days but have treated me as an individual and have so help me live.
Those in the NHS are now amongst the most poorly paid in the UK, not able to afford local housing, many squeezed out by rich people second home owners or by the 3 out of 4 elderly over 75 who are admitted as in patients to the Exeter Hospital. I despair at the stories being told to me by nurses with student loans and long hours culture only to be denied an opportunity in life to own their own home through market forces and the plainly daft concept of selling off local authority housing and not allow the replacing of that stock. It might be old fashioned but the concept of social housing for these “band of brothers” of Doctors, Nurses, Police, Fire, Ambulance and Teachers is one I will believe in until my dying day.
Back to my neck, I have a line of cut from underneath the chin, an 18 cm horizontal line along the crease line of my neck and a right angle cut about 12 cm to my shoulder, all affixed with some groovy industrial staples. I have facial and neck bruising mainly from the neck surgery and the wisdom tooth removal. My facial muscles hurt as do my shoulder and neck region, my nerves were stretched and some severed hence the pain. The pain is mainly across the left side of my face, neck and head, into the upper regions behind my head. Life today has been all about supporting my neck where the muscles were and finding a comfortable spot for my neck.
My voice is slurred and my smile is small but I am alive.
I am very sore tonight but it’s only pain, which will go away, and my wounds are healing and the scar will only been seen when you look closely and when I am open necked.
I awoke at 2 am this morning flat on my back, it is obvious with my cuts and bruises that it is the only comfortable way to sleep. I managed to drift off to sleep and awoke again at 0850 grasping for painkillers more out of comfort than need.
I was able to have a bath this morning followed by a visit to the shop. It was a very weird feeling walking out this morning knowing full well that my bruising and my staple and cut line is not very attractive and that look is glum. They only look once, you see in people eyes upset, shock, pain, empathy and sadness. It was very hard to too walk outside the hospital where your scares are accepted as par for the course into the open World. It was obvious that the shop staff were wary and shocked but they only look once. I think the hardest part was walking back home held high as I could get it, as the row of holiday makers made their way slowly through the one-way system was the staring at me as if I was some elephant man. I found that very hard to comprehend, and one in the next 10 days I am going to have to get use to.
The scars will hardly been seen but with the help of Sarah’s suggestion for a “Blackadder ruffle” tights, and cod piece I will be back on track and looking Dandy, thanks Sarah and her friend Jan for that one do they do it in large and purple?
Dreams, now my medication is hardly far out in terms of hippy visions but for the 1st time I have had very vivid and very weird, I am sure you will read meaning into them go one give me a clue.
The 1st one was last night it involved a flight from Exeter Airport, an ex girlfriend who most of you will know her as “Mrs Doyle from Exmouth” and a quickly arranged weekend away somewhere which escapes me for now. The whole weekend was last minute and for some reason I had to hail a taxi in Heavitree, alas the taxi business was stitched up but some rather heavy set Balkans who took my bag and wrapped in cling film, of course the taxi never turned up and the flight was missed!
The 2nd is one I have had before which involved a large country house, with a large number of floors which were empty, a conference type event on my floor, sleeping over, and ended with 2 old men booking in to the hotel on the first floor run by Nick Laws (An Exeter businessman) complaining that the hotel was miles away from the town and no bus service! At that point I woke myself up.
Thanks today to Pat, Ron & Sarah for the shopping time to go for more strange dreams.
Monday, May 30, 2005
I am very tired, but big hug to O for coming to collect me and sort me out tonight, too tired to type and tell you all the low down, but keep this thought for mega surreal postings tomorrow.
Is the RD&E Hozzie really just an "Easy Hospital" with Stlios in charge?
Sunday, May 29, 2005
It is 1900 and it is black, lying in bed the curtains and the walls are spinning and my depression gets deeper, six months of this bus ride when will it end. I am hot, sweaty, my heart beats and I am silently screaming like Euan McGregor in trainspotting when denied his fix!
I am alive with my thoughts in this dungeon, across the way the bed opposite tells story of people dying in A&E to visitors who would be best suited at the base of the scaffold with their knitting. I feel myself despising my fellow room mates for the lack of their apparent illness, swing the lead, not in pain but here for the ride, why do I think that?
I am writing this when I feel like exploding. I do I put my book over my eyes and weep uncontrollably. I do not want to be here, I want to go home, why me, sod the World I want to get off. I am trapped ithe prisonnn cell of life and death staring out at the walls like a condemned man and the wallstaror back and enclose me closer. It is that prisoner bubble with added pain and terror, the World and the Hospital goes on all around you but wanna stop the World and say "I am special stop the World I want to get off"
I cried for an hour with a little nurse called Karen, she held my hand let me exhaust this emotion and frustration, when it was over the pain was still there, the prisonwas still there but I was one step closer to the journeyss end which says one full year without cancer!
I woke up on Day 9 Sunday and drew the conclusion that Hospitals are not for cure but recovery. Cure is a word and something I will have to learn to live with I will never hear. I can be cancer free my no Doctor will ever say I am cured! Day 8, that Sat night was the worst night of my life, the worst moment, but I survived, because I had caring people around me, now what does that tell you?
Hospitals mend the body but not the brain. Last night my brain took over and said its hurst, fortunately my weak body could not move from its prone position racked with pain, dispair and anger.
Footnote: During one of his lower moments a nurse, of possibly Philipino extraction , very quietly asked him "Do you believe in God?". With considerable restraint on his part he replied "No and I feel better already!". My thought on this is that although we laughed about it I do not think it is appropriate for weak & vulnerable people to be approached in this way. Just my opinion. He will be ringing again to-morrow so will update then.
p.s. DEVON WON!
Saturday, May 28, 2005
I had my first look at my wound to-day. F*** ( sorry Nigel, can't type that out - lol ) I have tubes in and out of it. Parts of my face are numbed and bruised and I am now getting the idea where my nerves have been severed and cut as my left ear lobe and neck region have lost all feeling.
Today is a better day, plenty of reading & racing on the telly!
This was all he was able to write to-day ( Saturday) as I arrived and took it away. I will not be able to visit for the next couple of days so will probably not be able to update this again. Allthough he is ringing me to-morrow so I shall ask for an update then. He is still looking really well and will be going home on Tuesday - so no "run to the sun" for Nigel then! He is sitting out of his bed and going off to the bathroom unaided. While I was there this afternoon he had his sexy white socks changed and his tootsies washed! 5* treatment all the way. He is eating quite normally which I find amazing! Bye for now, Pat.
Nigel says; A black day indeed, I ended up the night in near tears, pain & tiredness, drove me to the point of breakdown last night ( he is writing this the day after ) . The consultant was very pleased with the result of the operation. The wisdom tooth and tonsil were subdues by the long lasting pain killers. The loss of nerves, muscle and most of my left neck structure came as a shock. A fantastic young lady called Jody looked after me, treating me with compassion. She got me up, bathed me, applied my cream, made me smile and even at 21.00 kept me smiling.
Friday, May 27, 2005
Day 6 - Thursday.
I arrived at 7.30 am. The journey from Starcross was one which touched the heart.Pancars(?) the super little taxi company which operates out of the village, were bang on time. The owners double as editors of the local parish magazine. It transpires that the husband, and my driver, is in remisssion with lung cancer.They give up the magazine this year which is a shame because it is certainly a racy little number and certainly pulls no punches.
08.45................I have been visited by the collected medical team at Otter Ward. The pain of the tonsil is subsiding as the realisation of my fate awaits. It is a strange feeling but I feel safer here, pain free and relaxed.I suppose it is about feeling safe. In my life I have never really felt safe, the fear of my childhood which I took into my youth and adulthood has gone. With the help I sought I am able to write this morning with strength and courage. I had fought all my life and the cancer has at last given me the chance to reflect on what the future may hold.
09.10...................Blood! What do they do with it! I have had more blood taken! I think somewhere there is a huge vat of it with Michael Howard lookalikes sipping at the edges. I have been told that I am having a far deeper operation than first expected which includes a deeper ( clean cut?) at my lymph glands. The MRI scan showed that rather than one lump there were several nodes that need removing. So be it! It is a strange feeling sat awaiting for the call, the first patient has gone down for his operation and I am next on the list. The future starts to-day - the removal of the cancerous cells is the start of my life, a life which has just begun ( and full of pain?)
10.55......................The men in blue arrive, no not the rozzers or Chelsea AFC but the porters. There is a sense of ? when they arrive, the reality is your treatment starts here. I quickly penned a note to William and Ellen, the concept of telling those you are close to and love is not new. When flying I always used to call Sarah and ask her to tell William as well as Sarah that I loved them. I climbed onto the trolley via a small set of stairs, the stairs and the climb to the trolley made me think of the climb to the guillotine of a French aristocrat , helpless, stripped of dignity and ready to have sharp implements applied to my neck. The short trip to the operating theatre was uneventful but also both porters were Liverpool fans who took great glee in telling me how fantastic the Champions league (?) the previous night. Whilst the trip was short my mind still brought back the guillotine feeling. The anaesthetic room is small, functional and full of modern computer systems. It is here that once again my mind confronted the reality of I was in this room to face my own mortality. The wait for the sleeping drug was one of the longest of my life but the staff can only be described as fantastic, making you feel at ease and drifting you off to sleep. Two occasions now the sleep has been deep but no (?) dreams, has anyone else had a dream whilst under? I woke about 16.00 and did the same as last week, grabbed at my neck and shouted "Yes"!. The next 30 minutes was surreal. Discussion took place with nurses on Star Wars and gardening, then a personal visit from Andy (?) , a theatre nurse who I went to school with! My face was numb and both my neck and my mouth were huge. The 1st instant (?) right more staples than Office World, a numb tongue and very little pain.
18.20.................I arrived back on the ward and a combination of injected drugs and self administration of morphine kept me pain free. The numbness of the slow relief anaesthetic in my throat kept the tonsil pain at bay, in fact - what pain! The slow release of the anaesthetic allows the wisdom tooth extract to go mainly pain free. Sarah had reminded me that when she went into to have Ellen that ask and use all the drugs. I can assure you that the morphine plunger was well used!
Day 6 ended in a blur.
Pat says; He has been told that they have got everything and it is looking good, just get the next stage over with and he will be back bugging us all! I will try and get in again to-morrow when , no doubt, he will have more of chairman mao's thoughts for me to type! Bye for now.
Thursday, May 26, 2005
Jim Orr, Barley Mow.
Tracey Turner - personally ( and he knows what Nigel is going through) and on behalf of Wessex RFU
Jan - his step-niece ( I think!)
p.s. - Nigel, when you are better you are in for a slapping! He told the nurses his sister "Patsy" would be his contact - he knows I will kill anyone who calls me that!
Well today is operation, the ticket for the bus is bought, I have a seat and at 0700 the bus leaves for the hospital and the long journey for recovery commences.
This morning I start the long and painful treatment which I hope will put my cancer back into long term remission. Cancer cannot be "cure" in the black and white sense of a tick in the box but it can be contained, destroyed and relieved. No Doctor will ever tell me that I am cured because that cannot not happen.
To remind you I am having my lymph nodes in my neck removed, a long with a wisdom tooth which may of been tricky should it need removing after radiation therapy. Then at some stage in the next few weeks I will be sent for radiation therapy.
I want to thank everyone for their support this week and help you have been great. Some people have found it hard to deal with I know and I am sorry I could not break in any better way but time has not been on my side.
I will different on Sunday/Monday when I come out , I will be in pain, and my mind set will be coming to terms with I have cancer, the nerve loss and feeling around my left ear and cheek, a lip that my droop and a shoulder that will be sore. I will also have the trauma of a scar on my neck. So please please forgive me if I am not the bouncing Nigel you all know, I will get back there but I am only human.
I must go now but send my love and best wishes thank you for sitting beside on this bus journey of life.
I like this quote, come join me:
"Life is short and we have never too much time for gladdening the hearts of those who are travelling the dark journey with us. Oh be swift to love, make haste to be kind."
Love Nigel x
Wednesday, May 25, 2005
It is has finally, after 5 days hit home that I am fighting and battling for my life. I woke up today and realised this is it, the most important fight of my life begins today and one I have to win - F"*k !
I have been living in a denial for a few days with the pain of the tonsil but as that goes away the realisation drifts away the facts are plain, what happens in the next 24 hours, then the next 6 months are bottom line life threatening.
From 2 months ago a life which had found a spiritaul hapiness and a new career and home to a life which another force is trying to rip away from me and my children and my friends. Now that is scarey, I have to face my own mortality and it is staring back at me.
I wish I could write something witty, funny, scarcastic, but hey this morning it is hard, so hence only the short blog entry so that I can write something more lucid and upbeat later.
Tuesday, May 24, 2005
It is day 4 and last night intense burning pain is slowly going away from the tonsil area. You read and speak to people about adult illnesses you should of got as a child, mumps, tonsils out, wisdom teeth out, chicken pox, and they say "oh its much worse as an adult" I am sure they say with glee as they were a sickly child and had all the ailments under the sun and now know you will suffer 15 times the pain they did! I suspect they are the sort of people you would find at the front of witch bonfire complaining that "witches need so much help to burn these days"
I am sorry to say the witch burners are right! Bring on the witches I here you say!
Today is support day, I have contacted FORCE a cancer charity in Exeter who have just opened a fantastic charity support centre in the grounds of the RD&E hospital at a cost of �G900k raised by local charities, yes local charities. I must admit there is something obsence about a country that spends �G3 billion pounds removing a ruler of a country under a false and illegal premise, but forces charities to raise funds for health support services that should of been provided out of the �G3 billion pounds. Sorry being political but the point I make is a no brainer when you consider this week a 9 year old died in Great Ormond Street Hospital because there were no funds available!
I am off to the FORCE relaxation therapy session tomorrow, 12-1 which I am looking forward to, and on hand there are counsellors and complimentary therapies which alas there is a waiting list but at least I am on the bus and with a ticket.
The phrase "on the bus and with a ticket" is my latest buzz phrase because that is where I am. I have a chance, I am on the life bus and have a ticket, last week many were denied entry to that bus given bad news, and not allowed a ticket, it is for me to safeguard that ticket and keep the bus rolling!
Monday, May 23, 2005
The wait was short, a bit like the consultation 10 medical people lined up like a firing squad ready to answer your every question. Well I had prepared, note in hand and Pat with pen poised like a rapier in the hand like a light brigade officer, look where that got them. Alas answering of questions was poor and collectively they would of struggled to win University Challenge.
Ok I know you want the bottomline!
- The tumor was isolated to the tonsil, it had not infected the soft palette or the throat/mouth. Good news !
- The lymph gland was doing the job I pay it for, taking all the cancerous rubbish away from the tonsil, alas now infected with cancer cells.
- There is no evidence that it has spread to the rest of my body, but still no chest x ray result
- So plan of action dig out the tumourous cancerous lymph glands, all of them, alas sever a nerve or two send the lumps off for analysis and when ready start radiotherapy! Should keep me busy for three months!
Simple ah I wish, alas because of radiotherapy often unwise to remove teeth afterwards as infection can set in so that impacted wisdom teeth, on my left side, yes the side of all the action, needs to come out on Thursday, so along with a tonsil and a little matter of a few lymph glands with a dash of cancer added to removed looks like a fun packed 14 days not!
The match starts on Thursday morning for wisdom tooth and lump removal oh I just cannot wait!
Woke up at 6.30am the pain killers wore off and disrupted a dream about bill paying! That was a blessing. On taking the medication drifted back to sleep to be rudely woken at 9.15am, yes 9.15 how fantastic is that by Doctor Perkins from the Starcross surgery.
Doctor Perkins, not of Bates Motel fame is very sound bloke. He is in fact not my Doctor, but the Doctor who sent me to the EMU (Emergency Medical Unit) of the local hospital not convinced with the locums Dr assumption of mumps. I have to thank him for his professional conduct, it if wasn't for him I would not know what I know now. He has taken a keen interest all the way through my illness and today offered his support and help through the treatment that I am hopefully to be prescribed this afternoon.
The NHS is not a political football the people who work within are amazing, caring and fantastic people, it is important that when I am better I turn my energy to ensuring that politicians know never to use this fantastic service as a political football, lives are more important than politicians egos.
Must go have a great day!
Keep attacking! Nigel
Sunday, May 22, 2005
At about lunchtime the tonsil pain and tiredness kicked in and I sent for my bed, alas my new found passion of baking home bread meant that sleep was delayed whilst bread rolls were made. I have often always wanted to sleep during the day but life conditioning ensures we do not. We should sleep when we can!
I am having to endure three painful experiences, a full house of trauma
1. The painful removal of a tonsil, yes just one more pain to come!
2. The news of a tumour and cancer
3. The waiting to see further results tomorrow and of course when the surgery starts
Talking of conditioning I am finding hard to accpet peoples kindness is that a British thing, when people are just so nice?
In my post yesterday I forgot to mention the feeling of being out in the big wide World with cancer and having a feeling of helplessness. I went out on Saturday morning and felt helpless, I had the feeling that I should be approaching people like my mother use to approach strangers and saying "I have cancer you know" A sort of feeling that the World continues and you live in a big bubble like the prisoner. The World carries on around you, but you can see people thinking why is that man staring into space, why is he drinking iced water, why is not with us here. I have often forgot that when we meet people that many things are happening to them or has happened and we only survive in our cocoon not really knowing the tragedies, heartache and trauma and others maybe suffering. Two days in, a feeling I am getting to know so well.
I would like to thank Oprah for the galaxy tonight it would of been very rude of me not to have eaten it, please feel free to call againwith large bars of chocolate!
PS: Question for everyone, ideas please, what do I do when I have a black day and the whole World seems awful? Suggestions please.
I have the mother of all sore throats, but then again Mr Brightwell, he of RD&E fame did tell me it gets worse before better with some glint in his eye.
I am not sure my recovery has been aided by watching the Eurovision last night, or a dose of "Pirates of the Caribbean" which made history as the 2nd movie I have turned off before the end. I slept well, but still very tired, and suspect a few winks will be had today, along with ice water and smoothies.
It is now 24 hours away from my next hospital visit where I know I will find out the extent of my illness including my chest x ray which is a kinda scarely bit and of course the treatment plan should it all go well with the chest x ray tomorrow.
Well I must go and get the carrot and tomato juicer going, whack the vitamin c into me and take the short stroll to the newspaper shop.
Enjoy your "Summer" Sunday its still raining!
Saturday, May 21, 2005
That is a question I have thought about all day, amongst others less than 24 hours after being diagonoised as having a rare form of cancerous tumour in my mouth, following the removal of one of my tonsils.
I suppose the reason is to give me a way of talking, because it is bloody painful at the moment but sharing the trauma and stress with my family and friends who have been absolutely fantastic over the past 24 hours.
The thought of sitting there and having someone tell you that dreadful news haunted me all night, my dear friend Marta came down from Bristol and supplied the on tap hugs last night, but it was not until the early hours of the morning when the pain of the extraction of the tonsil hit home, that I realised I have a potentially fatal illness inside me.
I have started this blog because it will give me the chance to worry, moan, and explain my life which I often never understood, it will give me strength to absorb the warmness and strength of my friends and convert it into postive energy, it is that with that energy that will allow me to beat this and once again feel well.
Must go Doctor Who beckons!