Home

Good Evening and welcome to my latest post. I'm home and really pleased to be here. It took a little bit of negotiation and a little force to get here but  here I am. When the bandages were removed from my foot, it was too swollen to allow my foot to fit in to my slipper. The physio wouldn't let me do the stairs test without a sole under my foot, so I had to think quickly. I knew that I always keep a pair of hiking boots ( unused ) in Lynns car, just in case my eldest one decides to go for a last minute hike ( it has happened before and I have got the sheep s*** on my best shoes to prove it). That was option 1. I persuaded him to go for a short walk for half an hour because my foot had only been unwrapped for a few minutes before he came for the test. There was no way that the slipper was going to fit, but remember, I have appeared in a version of Cinderella ( no , not the pornographic version ), so I can remember some of the cunning ruses. Now I've spent some considerable time writing notes to, and, since I started to talk again, generally chatting up the nursing staff ( exclude the male nurses from this bit ). Whilst none of those on duty was interested in destroying patients property, I had no trouble in acquiring a set of scissors. The offending slipper was slightly reconfigured to enable the foot to enter, the stairs test was completed successfully. He said I always smile - this was more like a grimace but the end result was release on Friday, 3 days early. I expected to get home and drop in to my usual lifestyle . Perhaps I expect too much. I got home and dropped off. I woke up on Saturday , after a half decent night and dropped off. Rob had texted me some scores but I slept through a good portion of Saturday. Today, Sunday is a lot better. A decent nights sleep, a little less pain and I have been awake most of the day. District Nurses are calling in to re-dress wounds- the traccy is healing well, but the leg is still seeping a little, so where are we ?

I am home.
I had a tracheostomy,which has currently left a small hole in my windpipe. This should  heal in a week or so. At present, it is a nuisance rather than a pain, because I cannot get the pressure in the windpipe to enable me to walk and talk properly. Walking takes a lot out of me, even with a stick .......yes. Chris Elkington has a stick ( not for long )
A section of my right fibia ( leg) has been moulded to form a jaw. Leg hurts at present but not too much- exercising in progress.
All of the holes where I had drains hanging from my neck and leg are healing nicely.
Learning to eat without chewing ( no teeth in my leg bone ), so cutting into small pieces. I wonder if I will be more susceptible to Foot and Mouth disease.
Learning to cope with the more difficult words presented by the reconfiguaration of the lower jaw. The tongue has been working overtiime.
The village kids will not be knocking on my door for Halloween,I still look pretty frightening.
My tumour has been cut out together with all the lympth glands around my neck. The scars are healing well and I feel good.!!!!

I've drafted through the notes I made whilst I was in hospital and especially when I couldn't talk at all and I will be adding them in soon. But there are an awful lot, even if I miss out the conversations with the nurses - it was a bit frustrating because it can  be used as evidence if you write it down !!

Thanks for the messages, esp CH and DF, nice to know you're still around.
Chris

The boy is back in town.

 Good Morning to any of my readers. Good news and bad news. The good news is that I am back well enough to write my own blog.The bad news is that I will be depressing you all over the next few days as I fill in the blanks during the very dark days over the last week or so. My face has now reduced in size. It was the size of a bankers wallet, that is five times bigger than it should be.It is now normal size above the cheekbones but still twice the size below the cheekbones.Last night I was able to sleep on the side of my head for the first time- there was no way that Lynn was going to let me go home sleeping on my back -whilst it remains very swollen and there is little or no feeling in my jaw, I can move it, I can talk with a little fingering over the traccy hole and I can eat. So all bodily functions in some form of working order.Expecting to be set free tomorrow providing that my leg heals ( thats the bit they sliced off to form my new jaw. They did do an 'after' scan to check that they had taken the sock off before they used it.The dressing was taken off for the first time yesterday ( and immediately re-wrapped). It is intended to take it off again today, remove each alternate staple to see if the bleeding has stopped properly then a walking up stairs test with the physio ( despite the fact that I live in a bungalow ).If that goes well, I,m gone, so wish me luck.
Thanks to all those who have left me messages on various medium,it really has helped when Simon and Lynn have come in and told me who has posted what.
Thanks again- hope to post again tomorrow
Chris

Tracheostomy removed

This should be my (Simon) final update before dad takes over the reigns again.  We're hopefully going to get the internet sorted for him today so he should be back on it from tonight onwards.

Over the weekend he's had all drains removed and the tracheostomy has been taken out.  He's started drinking again and should be eating some food today or tomorrow.  An unusual story as to how he started drinking.  I got a text on Saturday morning saying they'd put a jug of water and a cup on his table.  He said he was really thirsty, so he drank the lot.  At around 5pm, the horrified doctors realised he'd drank the whole jug (he is supposed to be nil by mouth) and told him it was supposed to be for cleaning his tracheostomy!!  It worked out in his favour though as they realised he could drink and so the tracheostomy was removed later that day.

He's still improving at a good rate and his speech is getting better.  He went for an extended walk yesterday to the other end of the ward because he "hadn't seen any grass in over a week".

Thanks to everyone that's been reading this over the last few weeks and thanks for the kind messages of support.

Over to dad...

Further improvements

It's still Simon for the time being, but my dad is now eagerly awaiting his first post back!

He's improved again over the last few days and the swelling is still going down.  Most of the drains, pipes and tubes are out now and the tracheostomy should be removed in the next few days.

The two big improvements now are:

a) with assistance, he was able to walk about 50 yards
b) he's seen the speech therapist and is now able to say a few words, which is a few days ahead of schedule.  He can't talk a lot yet, but he seems determined to keep the pace of improvement up.

The doctors have commented on how fast he's recovering.  The physio said today that he is doing so much better than expected and to "keep it up", to which dad responded, "Don't worry mate, I will, I want to get out of this bl**dy place"!

Hopefully he'll be back on here soon.  We won't be seeing him until Sunday now so next update will be Sunday night.

Simon xxx

Progress update

It's been a few days since I last updated everyone so I'll run through the last couple of days now.

After such a good start on Monday, Tuesday was a bit more difficult.  Dad hardly slept at all on the Monday night and the swelling had started to come out much more on the Tuesday.  I don't think any of us had expected him to get worse, but he was clearly much more uncomfortable and wasn't able to move much at all.  He could just move his hand to write a few things down, but was really tired and not as lively as the day before.  The surgeons came round to see him and said that the swelling was a bit more than expected, but that it tends to be at its worse 24-48 hours after the operation.

The good news is that yesterday saw a massive improvement.  The swelling has gone down a lot overnight and although he didn't sleep very well again, he was a bit more comfortable and more chipper - some of the jokes were back, which was great to see.  He was also able to get out of bed for 2 hours, sitting (and sleeping) in the chair next to his bed.  Dan came up from Essex to see him, which really seemed to cheer him up.  He's got a TV card now and we left him watching the Arsenal match at 8.30pm last night.

We're going to be leaving today (mum's staying an extra day) to go to Dan's wedding.  It's a real shame dad can't make it, but the important thing is that the tumour is out and he's getting better.  Hopefully the Skype will work for Saturday!  I think dad might be back on here soon to update himself, but I'll talk to mum tonight and add something based on how he is today.

Thanks to everyone for the messages of support.

Simon  xxx

Recovery starts here...

Simon again here.

We went to see dad last night just a few hours after the operation.  He was heavily sedated so he didn't know we were there.  His face and neck were really swollen and even without the beard, we could tell it was him.  It wasn't very nice seeing him like that, but it was great to see he'd come out of the operation okay.  The surgeon had clearly done a great job with the reconstruction and stitching him up.

They woke him up at 7.30am this morning and he's been on pain killers all day.  Apparently his heart rate dropped quite a lot during the night, but they've done some tests and all seems okay and back to normal.  His face and neck are still really swollen, but it's been really great to see him.  He was awake when we got there and immediately got his pen and paper out.  He'd written three things already for the nurse and one of them was "Can I have a Guinness, please" - apparently she asked him if there was anything she could get for him.

He's gone through 8 sides of paper during the day (95% of the comments involve some kind of humour) and there's definitely been an improvement with regard to the swelling and he perked up as the day went on.

They're keeping him in the Intensive Care Unit tonight and if there's space on the ward, he should be back up there tomorrow.

Overall, the surgeons did a fantastic job and I hope we can all look forward to the recovery from now on!

Simon  xxx

Operation over...

Just wanted to let everyone know that the operation's just finished. The surgeon said it went well and the tumour has been removed and the reconstruction has finished. They're just stitching him up now and he should be in intensive care within the next half an hour or so. We're going to see him later tonight, but he'll still be asleep.

What a relief all round! Hopefully it's all up from here.

Dad said if the operation is successful and he makes it to the end, to post something on here saying, "it's finished and I'm still alive".

Will post something later tonight or tomorrow morning.

Simon. xxx

Dad's checked in

Just left dad at the hospital - room 13...he was delighted at being given that one!

The lead consultant seems very nice.  It was very different hearing him talk through the procedure than hearing mum say it - somehow made it seem more real.  He asked dad to shave his beard off (first time in around 40 years), which really didn't go down very well.  He got rid of it while we were there (keeping the moustache) and actually looked rather distinguished.

His operation is due to start at 9am tomorrow morning (Sunday) and should be finished around 7pm.  I'll post something else tomorrow night when we hear something.

Simon  xxx

Getting closer

A four and a half hour round trip to Birmingham to spend 4 and a half minutes on the CT scanner. This was not the pleasant CT scan I had a few weeks ago, it was one of those where dye is injected in through a candula or whatever it is called. the nurses were very good when I explained my wimp-like dislike of needles especially when I showed them the bruises from Tuesdays efforts and used minimum needle size and the left arm. The dye gives a sensation of getting very warm and wanting to pee, but I had to lay very still while I was being scanned through the doughnut and the sensation had gone off by the time the candula was taken out. Traffic was crap - 5.00 pm in Birmingham is not to be recommended. Lynn accused me of making inappropriate comments as all she could hear was female laughter in between the instructions to  'breath in - hold it- breath normally '. They were just good fun.
Still not looking forward to Sunday, but its got to go .
Simon will be posting the updates until I am well enough to do it myself. It had better not be too damning or else I'll write him out of my will .

A Hiccup ?

12th October- one of the surgeons rang - pathologist needs a bit more re-assurance - can you come in for another CT scan ? Eventually set up for Friday afternoon, I dont think I'm going to look forward to that either, but needs must- I'm off to Birmingham again.

The Dreaded day gets closer

11th October- Another early start for another trip to Birmingham QE for a 10.30 appointment. Traffic is awful through A46 roadworks and M6. Our usual 2 and a quarter hour journey takes 3 hours and ,guess what, I'm late !! Thats me, late, whoever heard of such a thing. We had rung in to warn them and when we arrived 15 minutes late, the team were there to greet us. A full compliment of dieticians ( told her- no lettuce ), speech therapist ( told her- I didn't want to speak in a Brummie accent ), Councillor ( didn't tell him I used to be one ) and our contact. Long discussions on what to expect and how long things will take. Looks a lot more promising now. I dont think the team knew what to make of me - theres no piont in being miserable, just cos I've got cancer.I've done the 'depression' bit and it doesn't help. Still not sleeping well, but I'm getting more better nights ( if that makes sense ). Anyway. back to QE - met a new nurse, who was probably in her first few days in a new job. It took a long time to make her laugh but we got there in the end. Had height and weight checked ( I've done a camel job and put on a few pounds because I think I might lose a few in the next few weeks- but I fit well into the Green area on the BMI chart. Thats Guinness for you  coupled with a reduction in lettuce since the emd of cricket season !!. Had an ECG - she let me pull off the pads from my hairy chest and swabs for MRSA. Then, the dreaded blood test. It didn't go too well we had 3 attempts before they got enough and I almost fainted on the first go. Much form filling then off home. All set for Sunday morning ?

Progress at last

15th September- The day after Lynn had spoken to the consultant I received a telephone call, could I be in Birmingham Queen Elizabeth Hospital for the next day. Too right I could, so off we went to Birmingham on 16th. There I met a very thorough and professional team, who were very keen to move my case on. I had another stand up Xray, an ECG, a blood test ( almost fainted - I told you I hate needles) and a series of clinical photographs taken . The consultant was very thorough in telling me precisely what he intended to do and told me that he would repeat himself every time we met so that I had every chance to ask questions, and we certainly did ask questions. The cunning plan is to remove this tumour, BUT as it has already got hold of both sides of my lower jaw and infected at least four teeth, most of the jaw will have to go to. That leaves a big hole. That will be replaced by a section from my fibia ( leg bone) or shoulder or a bit of both. In a couple of years time, when all is healed,I could have some teeth inserted in my new jaw. Questions ? How long before the op? How long in hospital after the Op? What is the recovery time ?, Will I be restricted in movement? What will I be able to do after the op ? Can I ski /play golf/umpire again  ?

21st September - back to QE- another consultation, but we have had time to think of more questions. We had been told that it is going to be a long operation and , as part of it, I will be cut from ear to ear to enable access to the jaw. I will be fed via a tube through my nose and will have a tracheostomy ( tube in my throat to breathe through ). This is all starting to sound a bit grim but there aren't many choices. Had another CT scan , but without the injection this time ( Hooray )

28th September- its my birthday and,    as a special birthday treat, I'm going to QE for an MRI scan to see if the blood vessels in my left leg is good enough to be joined up to form a replacement jawbone. Another consultation, this is really impressive and more questions, but we now know what is to be done and we have a date. SUNDAY 16th October . 7.30 a.m start - they might have to start without me, I'm not too good at getting up in the mornings and especialy not on a sunday.

4th October - an impromptu send off organised by Norman and Peter. Really surprised to see so many people coming to my 'retirement party ?', Ian from Knaresborough, Frances and Barry from Bedford, Ian from Surbiton and over 80 other friends and colleagues, all coming to Lincoln for a last drink. I had prepared something ( just in case ) and finished with one of my trademark blockbuster speeches - i really enjoy doing those when I've preparerd properly. It is really humbling to receive so many cards, e-mails, letters and messages of support from so many people. i decided at an early stage to go public with this , but there are still some people who dont know what to say to me. I cant handle sympathy so I tell the full story in a matter of fact manner as though it was someone elses cancer. Most people react well to that approach, but there are a few who overdue ( to my mind ) the sympathetic side.

This is where it gets confusing

Now we know that I have a type of tumour, a cancerous lump on my chin, so what happens next. Well there are a lot of people who seem to have a finger in the pie but the pie doesn't seem to be getting baked.
The week after the news a multi disciplinary team in Lincoln met to discuss me. I would probably be going to Birmingham. I was to be referred to the MDT in Birmingham Orthopaedic Hospital. Now as little as I know of health, I do know about multi-disciplinary teams as I have sat on them in other spheres of life, but I coudn't seem to work out how this one operated.

18th August - went to visit my GP. Hadn't seen him before, he's been there for years but I've never needed to go to the Docs. Very nice approachable chap, who told me precisely what I wanted to know. He gave me some advice, suggested how it might progress and siggested that I write a blog. Me, a technophobe writing a blog, but now I know why !!! He suggested I take early retirement, So I approached an Occupational Health Consultancy to obtain a view.


Mid to end of August -We made some contacts and spoke to medical secretaries but there seemed to be a reason every week why my case was not being progressed - holidays, wrong people there,no histology,Chairman in China and so it went on for almost a month. We left messages with people who had promised to help us every step of the way but didn't received any response from either of the Hospitals dealing with my case. Frustration crept in and I decided to go on Holiday because nothing seemed to be happening, A phone call from the office confirmed that the Occupational Health specalist had stated that I should be pensioned off because I would never work again. That was a bit hard to swallow - I've worked all my life, since leaving school and rarely taken any time off, AND I really enjoy my job. We made some chasing calls whist we were on Holiday but didn't seem to be getting anywhere so when we got back we started to make more detailed enquiries. We took names of MDT members, traced documents and samples, rang round hospitals to check if names we had been given were correct. they were not all correct. There was some confusion between two doctors with similar names at different Hospitals. Eventually, on 12th September, a chance remark from a very pleasant lady in Birmingham, who said " I dont really know why your case is here, we dont do jaws " set off alarm bells. THats when I started to get really concerned, I knew it was growing, I knew no one was doing anything about it and I knew there were not many options. Life or Death ? Life means getting someone ,somewhere to do something about it, Death had 3 options - forget about it and let it take its course, a visit to Dignitas and finally, topping myself. The last option was quickly discounted because some poor bugger would have to find me eventually and I've seen people top them selves - it stays with you. Dont like the thought of it taking its course, could be a long slow, painfull process, so its Dignitas or get it sorted. As many of you will know, I dont like spending money so there really is only one option and I am not too keen on that one. I envisage pain and I dont like pain !!
After a short discussion, ( not that I shared my thoughts on options available ) Lynn got in touch with the consultant who had given us the news and then things really started to happen.

Starting to get a bit concerned

2nd August - another appointment to the Xray dept. I was expecting another stand up Xray of the jaw. I didn't know what a CT scan was. I do now. I was gowned up and asked to lay on a bed when I would be taken through a scanner - no problem . until one of the chaps told me he was going to insert a candula ( excuse spelling- I'm only just learning these terms) I know from listening to Mick, my brother, that that means another injection. My first move was to run, but bearing in mind my lack of clothing, I decided to grit my teeth and take it. It was not the most pleasant experience as the injection made me feel very hot, but it did wear off very quickly.

10th August- decision day. I fully expected to go in to be told it was a cyst and they would scrape it off. I did wonder about the lateness of the appointment, it seemed that I was last in the day. For some reason, and I know not why, Lynn followed me into see the specialist, He showed me the Xrays and explained that it wasn't a cyst, but was probably a chonrosarcoma, a type of tumour, but it was very unusual as he had only seen  one similar in a decade. I must confess that most of what he said went in one ear and out of the other. I remember him apologising for having to give me this bad news and I remember telling him that someone had to do it, but it hadn't really sunk in. The journey home was a bit quiet and then Lynn got to work trawling the internet to find out what I had got.

Hospital Appointments

16th March. A letter came through the post from the Hospital giving an appointment for 26th April. No need to worry, if they thought it was a nasty, it would have been a bit quicker. I could feel a lump with my tongue, but couldn't see it, it felt about the size of a small pea.
Hospital phoned just before 26th to cancel the appointment and re-arrange for 10th May. No worries, probably just a cyst, after all, I had had 2 fairly hefty falls earlier in the year- a 400 metre skiing slide ( minus skis, which came off at the top of the hill ) and a little accident with one of my cars when I trapped my head between the car door and the garage ( dont ask )

10th May, appointment to see Oral and Maxillofacial locum surgeon. A very nice chap who decided that I should have a biopsy to see what was the best treatment, but he felt it was probably a cyst - no worries.
Had a standing up Xray of my jaw.


28th June, appointment arranged for biopsy. Cancelled by telephone on the 24th as "the surgeon was off work all that week". Re-arranged for 22nd July. I was starting to get a bit jittery by now, there were getting to be too many cancellations, so I sent a recorded delivery letter confirming that the hospital had cancelled that appointment and that I would attend on the 22nd of July.

22nd July, not really sure what to expect, it hadn't grown much, thought that someone would have a look in my mouth and then tell me what they intended to do. BIG MISTAKE. I was taken into a room, the same room which I had had my appointment in May, to be greeted by two very pleasant gentlemen of eastern extraction who both had some difficulty in the use of the English language. With the aid of the nurse, I found out that they intended to give me a couple of injections to numb the mouth then take out some samples, so I signed the form , laid back and thought of England. Now, I hate injections, I've always avoided them whenever possible, but I have had the odd filling at the dentist, so I knew what to expect. What I didn't expect was the skin under my lower teeth being sliced open, a needle being pushed through my jaw from front to back, with some muffled comments from the docs , who were charming throughout the procedure, finishing with the stitching up of the skin with half a dozen stitches of the type I learned at cubs, decades ago.
It was when I felt the thread on my lips that I felt queasy and had to stop for a while. That was sore for a long time and the stitches took weeks to drop out. By now, I was starting to get a bit more concerned, the reaction of the two docs was interesting.

Just had a nasty thought

24th of March, my Dad died from a tumour on the brain.It was a very upsetting and undignified ending for him. He had had 3 or 4 months when he could not control his body and he found it extremely frustrating. His death came as a release as he was obviously not enjoying life anymore and, whilst it was a shock to us all, he had not suffered much pain, for which we were grateful. I was asked to do the eulogy during his funeral service, which was one of the most difficult things I have ever done. Halfway through the script, I looked at the coffin and just wondered, did I have something not very nice in my mouth ? Just a fleeting thought and I soon got back on track, but doubts were there.

It started with a visit to the dentist...

On 10th March 2011 I went to visit my dentist for a routine check up. He asked me if I knew that I had a growth on the inside of my mouth. I had no idea. He said that he wasn't sure about it so he would refer me to Lincoln County Hospital.