Early in 2008 I was suddenly diagnosed with a tumour on my jaw and then fast tracked into hospital. It didn't occur to me to keep a diary at the time.

Whilst its far from complete this is my story as I remember it.

I will update this as soon as I can. I can report that I'm still doing well and making still making a nuisance of myself.

Please take some time to write your recollections. We are not looking to mark you out of ten on  writing style or intellectual ability.

Sharing your story will help others to prepare themselves for the trails and difficulties facing them.

Knowing what to expect in advance and hearing from people who have been through treatment can only help them prepare.

Please send your story to web@hansg.co.uk

A pain in the neck Derek's Story

I’m in my 58^th year and I have a demanding job that requires short periods of very intense working with lots of stress.

It’s November 2007 and I have been so busy that the toothache I’ve developed has had to wait. I’m thinking that I’ve caused some of the pain myself as I’ve worked at least two 18 hour days this week alone and I’m run down. Munching Paracetamol is the order of the day.

Seeing a quieter patch I booked myself into the dentist which I really do hate. No surprise that it resulted in an extraction. Better that than a filling as I am inclined to run away from the drill. The pain went away for a day or so.

I’m still busy and the pain is returning. After a few days it’s full on again and already needs the maximum dose of Paracetamol so that I can work. I’m just so busy, my business partner is off on holiday and then first time I can get to the dentist is the 23^rd of December but I must get something done before Xmas.

It’s a different dentist and I can tell he doesn’t like the look of what he sees and starts asking me a whole bunch of questions about the symptoms. An impromptu conference is held and I am advised that I will need to visit the Maxillofacial department at the L&D and a letter was drawn up for me.

Having now left the dentist I’m pretty sure that I really must be in some kind of trouble. As its Xmas I will try to put it behind me.

After Xmas

The rest over Xmas seems to have helped and I feel pretty good but I'm still concerned.

I have turned up for my appointment on the 27^th of December and they have had a quick look at the problem. A barrel full of questions and the advice is that a biopsy and a scan is the order of the day. Following that I am to return to the clinic for a diagnosis. At this time I’m convinced that I’m probably in more trouble than I had imagined.

The biopsy has confirmed what all the professionals already knew. There is a tumour on my jaw and it is very much malignant, angry even, Urgent attention is going to be required.

I have tried since to reflect on what I felt like at the time. It wasn’t really a shock as I had kind of worked it out from the concern that was being shown for me by the staff. I can remember wondering how the consultant felt having to tell me that I had cancer. An appointment is made to discuss my treatment.

Telling people

My family knows that I am having investigations but I have played it down and I’m sure the severity is going to be a shock. I have attended the clinic alone so I can pick the moment to tell others.

I’ve got five or six hours before my family arrives back home. The burning question is where I shall go to pause and set my head straight. It’s not every day I get diagnosed with cancer.

I’ve jumped in the car and I’ve driven around a bit and somehow I’ve ended up at the shopping centre. I’m not sure why but anyway I’m in the queue for a large Cappuccino with extra shots.

I’m now sitting on a bench watching the world go by and reflecting on how bad my luck is at present. Somehow the combination of the bustle and the extra strong coffee has enabled me to reflect on my situation.

I’m not ill is my conclusion. I don’t feel unwell I’ve just got a bit of a toothache. In general I have a strong constitution so if there is a way through this I should be able to deal with it. My body is being invaded and I have decided that I am up for the fight.

I have also decided that I don’t want to be around people who want to feel sorry for me. I’ve decided that I’m happy to hear what the professionals think and I’ll make decisions based on what they tell me and the research I do. I have concluded that well meaning people with no experience will only serve to sap my mental strength.

I’m not sure how long I’ve been here ruminating but I have also decided that I had better concentrate on this problem and try to fix it. In the order of things to deal with it’s probably the biggest one I have.

I have also concluded that this might be the rainy day that I have saved for all these years so I resolve to clear the decks of work and remove the stress.

I’m back at home now and I have sat down and told my wife what has been discovered. I have also explained as best I can that I don’t want a whole bunch of people ringing me and telling me how unlucky I am. I’m not sure she understands my motivation but agrees anyway. She will tell my Son who is 18 this year at a convenient time.

I can’t help reflecting that I had private health insurance up until the middle of 2007. The company scheme closed and the new premiums were sky high because they didn’t want individuals.

Proposed Treatment

With my wife in tow I’ve just met with Mr. Chan (my consultant). I’ve been told that there is a cure but there is a cost to that cure. What is proposed is to cut my jaw bone away like a piece of timber infected with dry rot.

Apparently there is a spare bone in my calf they can harvest that can replace missing bit. They will screw this in place with metal plates. Following that they will take a flap of skin from my leg and cover over the bone, all that in just 10-12 hours of surgery. At the same time they will remove my Lymph Glands on that side which I’m told is precautionary.

On top of this I’m to have a tracheostomy which I’m told will be temporary to help my breathing in case there are problems. Apparently lots can go wrong and it’s going to affect my speech, my taste buds. Pretty much all my teeth, except those at the front, which I won't let go, will be gone.

Two consultant surgeons will be on hand, one for demolition and one for rebuilding perhaps. Apparently they will bring sandwiches.

Whilst my only experience of surgery was having my tonsils out at thirteen I’m strangely detached as I can’t see any alternative. My only question really was to get confirmation that it is a cure and not just maintenance.

I am advised that I may need Radiotherapy and possibly Chemo depending on the analysis of the removed body parts. I’m starting to get bored with the catalogue now and I think that if I can deal with the surgery the rest is probably not worth worrying about.

I’m told that they are looking to cancel a couple of previously planned operations (sorry if you missed out) and operate on the 24^th of January. Suddenly it’s all very real, I have a life threatening condition and to cure that I’m going to have a life threatening operation.

Preparations

There is a whole bunch of stuff that I have to get done in order for the operation to take place. I need blood tests, another claustrophobic scan, an iodine injected scan, X-rays, blood tests and I’m going to need a feed tube fitted as I won’t be able to use my mouth.

I’ve just met with the anaesthetist (Dr Spears). She is assessing how much it will take to put me out and keep me out for up to twelve hours and then to maintain that till midday the next day.

Dr Spears tells me that they are going to put a tube down my throat in order to fit the feed tube to my stomach. I really don’t fancy this and I tell her I’m not sure I can cope with that. She tells me that the drug they will use to anesthetise me will cause me to forget the whole procedure. “Yeah Right” I think, I’m not sure I am buying that.

I’ve put myself on a diet that is full of fish, vegetables, fruit, nuts, fibre and anything that can be considered healthy. I’m taking Echinacea and keeping away from people as I’m paranoid I’ll get a cold or flu and the operation will be postponed.

The diet is making me feel so well that I am beginning to wonder if the diagnosis is correct. How come I don’t feel unwell?  Its all very strange.

In my Head

Something has happened to me whilst I have been focusing on the problem so intently. I seem to have created a space inside my head where it’s calm and insulated from all the other stuff that goes on a round you.

The best description is that it’s like a field where you might walk a dog. Whilst there are people around the perimeter and there are houses and roads close by the centre is calm. So anytime I want to concentrate on the problem I just move to this calm place.

I also seem to have been able to push the boundaries of this space out little by little until I have created quite a nice place to inhabit.

My first MRI scan wasn’t a pleasant experience. I wasn’t aware that I was claustrophobic in any way. I guess having my head fixed into place didn’t help. I wasn’t advised that it would be best to shut my eyes so I had to ask to be pulled back out to re-gain my composure.

To cope with the scan I ran and re-ran the disassembly and re-assembly of the front suspension on my BMW some thing I had done recently. Perhaps if I’d been better educated I could have run through the theory of relativity.

Knowing that the next scan was not going to be the only mental challenge I had to face I decided I needed a better plan.

Hypnotherapist

I decided to explore this ability to create a space and find a way to deal with the challenges so I made an appointment with a Hypnotherapist. With just three days to go before the pre-op I’m sitting in a chair explaining about the space I have created and the challenge I am facing.

I’ve just been roused from hypnosis and I am aware that I have been in an altered state. The object of the exercise is to tie the space in my mind to a physical place I like to go to.

I am now being taught a technique that allows me to recall this pleasantly calm space very easily. All I have to do is squeeze my ear lobe whilst I am experiencing this calm space and eventually I will be able go directly there just by squeezing my ear lobe. “Yeah Right” I think, are you related to DR Spears?

The Hypnotherapist has sent me an MP3 file on CD that he has made for me. It’s a twenty minute audio track that is designed to help with healing. It’s certainly calming and I find it hard to stop drifting off when listening to it. I’m confident that it will help.

Surprisingly the ear lobe thing is starting to work. Perhaps I will forget about the tube down my throat after all.

Lets get the Show on the road

So here we are it’s the 23^rd of January and I’m due to have the tube fitted today and then roll on down to the ward for my pre-op and the surgery the next day. I’m still apprehensive about the tube down my throat.

Despite not looking forward to the operation I’m even more apprehensive about having the operation aborted for some logistical reason outside of my control. I don’t want to go through all this to get sent home again. Lets Rock and Roll is my over confident attitude.

It’s the afternoon now and I’m on the ward now in my new pyjamas feeling a little less confident. I seem to have this feed tube poking out of my stomach.

How did that get there?

God it’s warm in here. I don’t like central heating at the best of times and this is just like a punishment. I’m told I can have an anti room on my own which would be just about right as I don’t really want to socialise and it has windows that open.

I’ve had the anti room for about 30 minutes and I’m told it’s no longer mine. Well you can shut your own windows then.  I’m back on the main ward now. I’ve come to realise that I am have a problem with sick people and this is not the best place to be with an attitude like that.

I’ve convinced myself that I’m not sick and I just have a malfunction. The downside of that is my mind tells me I’m in the wrong place and I might catch something if I’m not careful. I take the sedative I’m offered, watch some TV and squeeze my ear lobe for a bit.

To Surgery

I awake in the morning very early as I’m due to start my operation at 8:30am. I just hope they have all had their Shredded Wheat this morning.

The push down the corridors on the way to theatre just isn’t long enough for me and shortly I’m in the holding area, frantically squeezing my earlobe, waiting to go straight into theatre.     

I don’t remember a lot more after that except Dr Spears approaching with a hypodermic.

Hopefully I won’t wake up with another feed tube.

It’s now midday or so the following day Friday the 25^th. Blissfully unaware of everything I am suddenly jolted to my senses. I have a tracheostomy connected to the oxygen pipe and I swear someone put their finger over the supply momentarily to bring me round.

I select a particular male nurse and decided that he did it. Welcome to intensive care.

Apparently they want to move me onto a different bed. I was quite happy on the one I had. The opiates I was full of meant that I really didn’t care anyway. I was struggling to breathe through the tube and wrote a note to the nurse to that effect.

After drifting in and out of sleep I’m listening to the TV which someone has put on for me. It’s Holby City or something similar so I have to ask for it to be turned over as I can’t face a medical drama.

Bored

I have fired up my MP3 player and started to listen to1984 by George Orwell. About a half hour in I have almost completely freaked out. The drugs seem to have made me paranoid and I have to stop listening.

Later I try Animal Farm (again by George Orwell) and I stop listening when I start worrying about what the animal might do to me. Bromeliad by Terry Pratchett (which is about elves) does exactly the same. I have given up on the MP3 books now and I’m looking for Hendrix and Flower Power tunes on the player maybe that will suit the substances better.

Planning my escape

It’s now Saturday (as I recall) and I’m transferred to the High Dependency Unit. I’m asked if I’ll try to get out of bed and into a chair. This is the start of my independence and I’m up for it.

I’m in the chair, which was easier than the physio thought it would be, and I’m not going back to bed until they force me. It’s easier to breathe and as I’m full of phlegm, created by the operation I guess, I’m happy to sit here even if the seat is a bit hard.

It’s the start of three weeks living in a chair without any sensible sleep. My mind has decided that the best way to protect me is not to sleep. If I don’t sleep they can’t do anything I don’t know about. There is nothing I can do about it. There is enough adrenalin being created to keep me alert night or day. I’ve realised that I’d forgotten to do the ear thing since the operation 

Time has passed and I’ve been made to get back into bed so they can take me down on the ward. No more special attention for me I’m going to have to share nurses from now on.

To be continued ….

(Derek is currently  back at work full time)