Wednesday 28 December 2011

Happy New Year

Good Afternoon Friends and welcome to my latest offering.
On the medical front, the swelling around my face continues to recede and I can now shave the bits I traditionally keep whisker free. The jaw is still a bit square but I can now feel my jaw line under the swelling and I can see that eventually I will look like me. The mouth has totally healed up although I'm still using the antiseptic mouthwash as not all of the stitches have disintegrated yet. The leg continues to cause concern amongst the medics- its healing very very slowly. the latest attempt involves monitoring of blood pressure in various parts of my body to see if I can stand a compression bandage,whatever that is. Friday may be monitoring day but we will wait and see.
On the social front, I've had a cracking Christmas - Pam told me it would be special - whilst it was almost traditional (except that I wasn't able to take my 2 mile Christmas Day walk), we had a really good time. Dan and Hannah and Si and Beck came for Christmas Day, even though it was partners turn this year,and we had some good games, plenty of food and copious amounts of liquid. Dan tried to get his own back for me landing him with ' Boutrous Boutrous Ghali ' when we played 'Who am I ' 2 years ago. I expected some kickback but even when it came, I got' Banc Ki' Moon faster that he could establish 'Captain Haddock' from Tin-Tin, so nice try Dan but your Dads brain is still in good working order.
Just before Christmas I went to Gainsborough Organ Society Christmas concert in my traditional role as 'clothes horse' .This time the coven who organise this thing decided that I may not be up to a female part, so dressed me as an Edwardian Carol Singer ( pictures on facebook ). Made a pleasant change from the usual slappers which they dress me up as!!!!.Lynn was dressed  as the Fairy on the Christmas Tree ( same photo ). Good costume but when she tripped, she found out that the wings were not up to the job, she is now known as ' Orville' the duck that cant fly !
Managed to walk to the 'Lion' on Christmas Eve and whilst I'm still regulating my alcohol intake, had a good couple of hours. The frustrating thing is that I cant stand for more than 2 or 3 minutes before my leg plays up . Its Ok walking but doesn't like standing, so propping up the bar isn't an option at present.
New Years Eve is planned for Morton village Hall, so hoping for a good night.
Best Wishes to you all for the New Year - I'm really amazed at the number of people reading this thing from so many different countries, so my very best wishes to you all and I sincerely hope that the New Year brings you peace, good health and happiness.
Chris

Saturday 17 December 2011

It must be getting near Christmas

Blog delayed slightly due to celebrations. The weekly visit to Birmingham was not one I was looking forward to, I knew that the latest skin graft was not going well as the District Nurse was a little diplomatic with her comments when she re-dressed it on Sunday,so we decided not to pack my pyjamas and Lynns suitcase in the hope that it wasn't going to be another ' I want you in, now '.
The tissue viability nurse had been called in advance of the removal of the dressings . I was really chuffed to find that Zoe had drawn the short straw , we have lots of fun with Zoe, and together with her colleague, who remembered me' but not with my clothes on' ( her words ), started a Morecambe and Wise routine to remove the bandages. I fully expected the gasp as the last dressing came off and with it, the latest skin graft. That was a real low point, but we'd had a laugh and after a close investigation by the specialist nurse and my surgeon, it was found that my body was healing the wound naturally under the dead skin graft - obviously resulting from the increase in alcohol intake following coming off the pills.There is a certain brewery which should be sponsoring me !!
The upshot of this investigation is that, providing the open wound is kept clean ,it will heal naturally . It will take some time, but it will heal and I intend to help it on its way in my own fashion.
The walking is getting better as I now have two separate dressings on my left leg so I can bend my knee much further and I have been behind the wheel of the Corsa ( lighter brake pedal ). Still a little pain if I dont keep my leg raised but that will pass eventually.
Had a trip to Thursford Christmas show on Thursday night with Si and Beck, Ann, Pete,and Jo, Lynn had to drive but it was a cracking show and we stayed over at Kings Lynn, finishing the night with a bottle of bubbly as Ann was celebrating too . Starting to feel a bit more seasonal, in fact it must be getting near Christmas because I've had my presents a bit early.
It does look like there is not much more I can report in the next month or so because it will be another six weeks before I return to Birmingham, unless things take a turn for the worse but I do have some really interesting news which I cant share with you just yet. However, I have been asked to continue with the blog so it will become a little less medical and a little more social.
I would like to thank you all for your comments which have really helped me , especially when things were not going quite as well as I would have liked, I couldn't reply to you as the comments come in anonymously, unless you sign your name at the end, but I really do appreciate your thoughts
If I dont blog before next week, may I wish a very Merry Christmas to you all. I will certainly enjoy mine - its surprising how you review things after a shock.
Best Wishes
Chris

Friday 9 December 2011

The emotional roller-coaster continues

Good morning all, we have the good news and the not so good news. We have had most emotions this week and a little pain, but not enough to take pain-killers.
The emotional high came on Tuesday evening when my pathologist rang from Birmingham to tell me that the source of the cancer had finally been located.It appears to have originated in a saliva gland. As these glands, all my lympth glands and everything else around my neck and jaw had been removed, then there was no need for radiotherapy and chemo was not now a recommended course of action. Given that most of this country's eminent pathologists have now examined the tumour and this is the almost unanimously agreed course of action, then I am content. So a day of highs, no radio, no chemo and a good diagnosis - I aint going yet !!
Thursday was not quite so good, my second/ replacement skin graft doesn't appear to be taking as well as it should. There appears to be something missing between the tendon and the new skin - we had a new doctor as the three-monthly turn round took place on Monday. I'm not sure if he thought that my suggestion of a layer of pork fat from the butchers was a serious one or not- on reflection, he might have been a muslim, I didn't ask, either way he will need a serious sense of humour implant if he and me are going to get on.It was finally agreed , by a majority decision, to clean it down, wrap it up again and leave it until next Wednesday, when the senior surgeon returns from his lecture tour ( he was really unhappy when he went because there is no snow in Switzerland at the moment - I suggested that next year, I go with him, as well as my X-rays and photos, there is always snow when I go skiing ).
From a recovery point of view, I'm now off the anti-biotics and back on the Guinness so I'm sleeping better, I can walk almost 200 yards, the muscles in my neck, shoulders and arms are slowly building up with the exercises and I feel almost back to normal. So onwards and upwards - blog again soon.
Best Wishes to you all.
Chris

Monday 5 December 2011

Latest Update

Good Afternoon All,
Managed to get out on Wednesday evening and got Lynn persuaded to take me to Johns funeral in Boston , early on Thursday. As expected, the chapel was full to overflowing, so I didn't hang about after the service, went back to the Petwood and found a quiet corner to put my leg up - just giving me a bit if jip at the moment. Bill , Johns son,had asked me, before I went into QE on the second occasion, if I would like to deliver a short Eulogy. I thought my speech capabilities had improved enough to do it, and I know that John would have wanted it, so I agreed . I had drafted a skeleton while I was in Hospital and, despite a poor start whilst I got my public speaking voice into gear, it went well and was very well received by those present. However, I had had a lot of attention from mutual friends and was well shot by the time I got home. Slept for a good portion of the night and didn't do a lot on the Friday. I didn't realise how tired I get, but I've taken out the dumbbells and I'm working on getting the strength and lung capacity back up to speed.
Had a pretty good weekend, let loose on Saturday night but severe restrictions on alcohol intake due to 'the boss ' reading the blurb on the anti - biotics. It doesn't say  'none ' but it doesn't say ' 3 pints of Guinness is good for you ' so I had to stick to one. which ,over 2 and a half hours takes some doing. Nevertheless, I had a good night catching up with friends and acquaintances, and, as I'd promised not to stay all night, left 5 minutes before the end. No reactions on Sunday, just a long deep sleep, which is something I've needed for some time.
Another good night and I'm beginning to feel  like doing something, so I'll have a steady day and do a few catch up jobs, write a few Christmas cards and sort the week out.
Bye for now - next blog on Friday ( after the office Christmas lunch - cant manage Turkey yet but I've found things I can eat )
Chris

Friday 2 December 2011

Home Again

Back home after almost a week in QE Birmingham. It transpires that one of my tendons grew over part of the skin graft (or the graft tried to grow under the tendon) resulting in the graft not taking and dying off. The skin started to rot, my body wasn't up to fighting that infection so thats why I fell over. QE pumped me full of various chemicals ( could have been anti- biotics but I dont know one drug from another ), then after 12 doses over 3 days, took me down to theatre, put me out again and cleaned out all the dead crap, removed the part of offending tendon and took a new skin graft from my upper thigh ( that wasn't explained to me, it was a bit close for comfort when I saw the dressing !!). The new graft has been stitched and stapled into place. After another 4 doses intravenously, I was allowed out at 6.30, Wednesday night - after a little discussion, with a weeks dose of something similar to be swallowed.
The main op. continues to improve, I can eat most things now, but cant eat bread; the jaw is as flexible as it was before the op.; my speech is so good that I was confident enough to give a short eulogy yesterday, and whilst there is still some swelling, it is going down to the degree that ,from the front, I look like me , the right side almost looks like me, and the left side looks like me after a couple of rounds with a poorly sighted boxer with a weak punch.So apart from this little setback ( which , of course had its benefits, thats another set of nurses who will carefully analyse potential admissions for a month or two !! ) Friends - when I see you, ask about El Grabbi and Nurse Tsio - cant use this forum but we had some fun with both.
Still no news on getting a match on the tumour - I presume its still growing in the laboratory, but my surgeon tells me that if they cant sort it and decide to forego the chemo, then he will fit prosthetic teeth into my lower jaw in 3 months -so look out cow , when I start to chew your days are numbered !!
Back to Birmingham next Thursday for a wound check, then we will see how the land lies.
Bye for now
Chris

Sunday 27 November 2011

Didn't want Turkey anyway - not !!

So here we are, 10.30 on Sunday morning and I should be getting ready to go out for my first Christmas lunch of the season, I cant get enough of Christmas lunches. Instead, I am sat here in Queen Elizabeths hospital, Birmingham because my leg has decided to become infected ( not enough Guinness) so I sit here with a canulla in my arm and every 5/6 hours, a nurse comes along to stuff some drug into me. The good news is that apart from a small section of the leg, where one of the skin grafts is a bit iffy, everything else is healing well. There is a slot booked for me in theatre ( not the Hippodrome ) on Tuesday should a decision to re-do the graft be taken, so here I sit in the Burns centre ( not Ward 408 – they wouldn’t have me back, something to do with nurses- I didn’t touch any of them – honestly , your worship ) I’m surrounded by Scots playing bagpipes, jigging over crossed swords and throwing telegraph poles all over the ward with deep fried Mars bars on the menu. Once again, the staff are brilliant, they don’t come across people from Lincolnshire ( none of them know where it is ), so I’m leaving a lasting impression, so they remember Lincolnshire folk – apologies for anyone who follows!! Desperately hoping to get out before Thursday because I have something very important that I want to do, but my fate rests with the medics.  Blog again soon – Chris

Thursday 24 November 2011

Ooops ! Not the best move in the world

This last week has gone fairly well, the traccy hole has sealed up and doesn't need any more treatment and the walking, talking and eating is improving at a good rate of knots. I've been out for a meal at some very good friends and have had a couple of visitors. The oncologist rang as promised, but didn't have any more news - despite more investigations, the tumour remains unidentifiable. I always knew I was a one off, but I would have preferred on this occasion, to have a run of the mill type of tumour which would have been treated elsewhere. Still, the investigation continues and I was due back at Birmingham on Wednesday next when they were hoping for a breakthrough - find the tumour type then the chemo type can be mixed and given to me. We wait and hope. However, this morning we had a little incident which threw all of the plans into disarray. The District Nurse had arranged for a waterproof cover for my leg so that I could take a shower. Its a really good bit of kit, totally waterproof and I can have a 10 minute shower instead of sliding around in the bath. This morning, as I got dried after my shower, I felt unwell. Lynn managed to help me get into a chair before I passed out.Within a few minutes we had 2 burly RAF Lives staff followed by 2 paramedics complete with blue light blaring ambulance. I had come round by the time they had arrived and my temp, heart,blood pressure etc., was ok..Nevertheless, it was decided to take me to Lincoln A&E . That was educational. There are 10 cubicles and throughout my 6 hour stay in and out, there was never less than 5 patients on trolleys all over the ward waiting for a cubicle. I started in the corridor, went to room 4, back into the corridor, into room 6, back into the corridor,back to room 4, off to X-ray, back to the corridor, into room 10 and finally discharged. It was absolute bedlam.There is an obvious shortage of rooms and staff to match. After much debate , poking, prodding, photo taking, blood sampling et al, it was decided  that the skin graft was not healing properly in one place and I had reacted to the poison, despite going on penicillin a couple of days ago when last Thursdays swab had highlighted a batch of bugs.There was some debate about orthopedic surgery in Lincoln. I didn't like the sound of that, so I got Lynn to ring my consultant at QE, Birmingham. Net result - I go back into QE tomorrow as an in-patient to get my wound sorted, so I will try to keep the blog going, but everything will depend on availability of Computer plugs etc,.So bye for now-
Chris

Thursday 17 November 2011

Euphoria, for a few hours

Another Wednesday,another trip to QE Birmingham.A decent journey down, Lynn is getting used to idiots on motorways and I'm beginning to relax a bit in the back seat. It still doesn't stop me getting frustrated - its 31 days since I last drove, I cant remember such a long break since I passed my test 41 years ago.
Really good news at QE. The surgeons and oncologists agree that they are as certain as they can possibly be that the surgery has removed all of the tumour and the lympth glands which were removed from my neck showed no signs of cancer. ALL CLEAR.
I agreed to more photos, more x-rays and help in publicity,after all its the least I can do in the circumstances.The leg is not healing as well as we would like and a regime change is suggested. It has started to smell a little of rotting flesh- a similar smell to when I burnt my arm on the lawnmower a few years ago. It doesn't look infected but further tests are needed. The swelling of my face has reduced further,but there is still some way to go.The dietitian and speech therapist are really pleased with progress and I met the chap who will be inserting prosthetic teeth in my leg bone, possibly earlier than planned. Oncologist would ring me later in the evening as he had other appointments. So we left Birmingham in the middle of rush hour ( you think Lincoln and Boston is bad - it took an hour to get out of the city ) finally got home just after 8, still in very good humour.
Oncologist rang around 9 as planned. He explained that all was well and he would try to get a course of 6 x 3 weekly chemotherapy treatments at Lincoln , if they were up for it. Then he dropped the bombshell, I must admit I half expected it. The tumour is very unusual, so much so that they have no idea if or where it will strike again, but watch the lungs.Because of the lack of knowledge, they are unable to find out which gene is faulty and as a result, the chemo will be , in my words because he was struggling, an analytical estimation of the the required elements and dosage ( in English that means a bloody good guess ). He will conduct further tests and make appropriate arrangements and ring next Tuesday evening in the hope of a breakthrough.
I really do hope that a secondary can be prevented, the surgery is marvellous, all of the surgeons are so proud of their work, justifiably, and we were planning to use as much as we could for training, not just in the UK , but internationally. So fingers crossed . Of course, it might be that there is no secondary, no-one knows because of the lack of experience in dealing with this type of tumour. I think first round to Chris and the surgeons, second round starts soon.
Hope all my readers are well- will blog again soon, possibly after the weekend. Dan and Han are coming to stay and will be bringing their wedding DVD - I forgot to mention that I missed my eldest sons wedding, but Skype worked fairly well so I saw most of it, heard all of it, didn't have to buy a new suit and managed to upset one of the bridesmaids with my pre-recorded speech. Not bad for a mornings work.
Bye for now
Chris

Friday 11 November 2011

The Dark Days

As promised, I've gone through my notes and hereunder you will find my version of the days following my surgery.Some of the notes and thoughts I had at the time will stay with me , I don't want to be charged with sexual harassment !! but I will try to retain as true as I can to my recollections .
Waking up time - I don't know when I began to wake up, everything was very hazy, but my first thoughts were that I had woken up so I must have survived the op.I remember thinking that my brain is working ( theres always a first time for everything ) and my hearing is OK. I guessed that I was in the High Dependency Unit because that's where I had been told I would go but I had very little movement. I thought my head was in a brace because it would not move from side to side or backwards and forwards ( found out later it was because of the swelling ). I could see as far as my eyes could move which meant that I could see my toes on my left leg ( which I was expecting to be in plaster ) and could see the plaster on my right leg, I was very hot and sweating profusely, so much so that my eyes were filling with sweat which made them very sore and I couldn't move to wipe them. The HDU nurse allocated to me was very good and told me what was going on, where I had drains and tubes and what she could do to make me comfortable. Regrettably, I couldn't speak and , at that stage hadn't worked out the ability to write, so I was very uncomfortable having to close my eyes tight to squeeze out the sweat. There was one further concern which I suppose those of you with more experience of these things will realise was ridiculous, but , at the time !! . I knew that I would have a caffetta fitted, but had never seen one before. My brother Mick had had several during his many ops and always said it hurt like hell when they pulled them out. I was prostrate on the bed, legs akimbo and at the extremities of my vision, I could see the 'caffetta '. I could see that it came from my groin area and discharged into a large box thing on the floor. The pipe was a good 3 inches in diameter. Now I knew that despite my many boasts, this was going to hurt when it came out. This thought remained with me until Lynn arrived. We had pre-arranged signs for writing, yes and no, and I managed to get her to understand how hot I was. She had a word with my HDU nurse who checked all my readings and then slowly removed the heater hose which was blowing hot air into my groin area - that was a big relief in more ways than one.
It transpires that my heart had given some cause for concern during the op and it was agreed to put me on a 24 hour monitor- stickers on my leg and chest and wired up. I still had no movement except for my right hand and my left toe but there was nothing in my body or my head.I was aware of unsuccessful efforts to save an old chap with heart problems in the next bed. I had no idea how close he was to me, or even how close the beds were or if they were in a ward system or in rows, I just couldn't see beyond my feet or either side.
Whilst I lay there with drips in. drains out,oxygen being pumped into my traccy hole, I did wonder whether this was going to be worth it, whether I would recover at all or at least enough to lead half a life. I suppose the thing that kept me going was that it was financially considerably more worthwhile for me to retire than die in service, so at least if I kept going until 31st October, Lynn would be much better off.
As the night progressed, I developed gunge in my mouth which I tried to cough out. The only decent relief was the 2 hourly change of traccy pipe which I could see was always covered in blood when it was changed. I would probably last 20 minutes after the change before I started coughing again, but laid on my back,there was no getting away from it.
I doubt if I got any sleep during the night, but I had become stable enough to be moved to the ward. There was a 3 hour wait from the decision to take me up until someone came to fetch me, it seemed like an eternity.Then came the transfer to the ward bed. This is where I felt absolutely useless and very guilty, There were 4 very slightly built young nurses trying to move me from the HDU bed into the ward bed. I can certainly understand why nurses get bad backs. I couldn't help at all and they were trying to move 14 stone dead weight, complete with drips, drains and monitors.It took a while but when I found I had movement in my left leg I was able to screw myself across and up to the ward we went, me and a gorgeous sweet nurse called Danielle, who had had the misfortune to be allocated to me for the first couple of days - boy, was I lucky. She was everything a nurse should be, and more, she spent time with me, she made sure I was comfortable, she had a wicked sense of humour but she was very thorough and professional throughout..
Even though I couldn't move much , I could raise my thumb and occasionally write, when I could get folk to understand that was what I wanted to do, but my handwriting was not good because I couldn't see what I was writing, it was only when Simon came in to see me that he noticed that and arranged for a prop devise so I could see what I was writing, from there it got much easier, I could communicate and people could understand me.
My worst time was the night of the Arsenal game, I had been struggling throughout the day with a build up of phlegm in the traccy and as night fell it got worse. I wrote to Lynn to speak to the night staff before she left, which she did and they did call and see me more regularly. However, about an hour after the game, I started a coughing fit which got worse and worse. I couldn't get my breath and as much as I coughed, I couldn't get rid of the phlegm in my traccy. The night doctor replaced the traccy but it didn't help and he watched while I got more and more uncomfortable and I could feel myself snuffing it. All of a sudden, out of the corridor burst the night sister, a lovely, well built west indian lady, she burst into the room, ripped the traccy out pulled out the inner, barked at the doctor to get some saline and started to operate the suction machine. She spent a couple of hours effectively sucking out what she could and diluting the phlegm. Eventually, she pulled out a piece of solid waste which looked like chewing gum, that was what was blocking the windpipe. I'm convinced that without her intervention, I wouldn't be writing this. That night I felt really rough but I suppose that that was the spark which fired off the recovery. The previous nights events had been circulated around the ward and amongst the medical staff before breakfast and there became a more urgent need to get out of the Hospital. I decided to do everything I was told and seek hints to improve my chances of an early release.
It really is surprising how much extra help and advice you can get if you show a positive attitude to your circumstances and I genuinely believe that this helped me get out early. so there you are, those were the darkest days. It all gets brighter from there, but I will continue to blog for the foreseeable future, theres always more to come.
Bye for now.
Chris

Dont panic Mr. Mainwaring

Its been a few days since I was last on the blog. Tuesday was a bad day, don't really know why, but I got tired quickly when I tried to change a bulb and had to give up. That annoyed me but I didn't feel too well, my leg hurt and I think the penicillin was beginning to get into my bloodstream.
Wednesday was the unscheduled trip to Birmingham, traffic was very light and we had the fastest trip ever there and back. I took back seat with my leg at 60 degrees, travelling in the guise of royalty. My good friend at the filling station thought I had won the pools and that I had employed Lynn as a chauffeur. Visit went well - no real problems, the skin graft over the Tendon is taking, but  not as well as the other grafts and the Tendon might slip out before it heals properly but there is no reason to panic. The hole in my windpipe has almost healed to the extent that it will have to be slowed down as it is healing too fast. Don't understand the logic behind that but then again, I know very little about health.Speech is going very well, no problems with telephone and most words are being correctly sounded ( a few slurs, but whats new !! ) . Decided to call into the office on the way back for 10 minutes ( promised and agreed ) Left half an hour later.
Thursday was not my best day, but not as bad as Tuesday, I guess that its going to take a good bit longer than I'm reckoning on but today I'm going to start with the dumbbells to build up the upper body strength again. Having a bath is a bit precarious because I have lost a lot of strength in my arms and hauling myself in and out with my right leg dangling down the side is interesting to say the least, Overall, all going well.
 Little message for those good friends leaving messages - thanks very much , I would like to respond privately in some cases, but the way the blog is set up, all messages come in as ' anonymous' so I have no e-mail address to respond to.

I've gone through my notes and tried to amend Simon's blogs but don't have the technical ability so this afternoon, I'm going to fill in the gaps when I was in a semi- conscious state from Monday till Wednesday.
Time for dinner - I'll blog again later

Monday 7 November 2011

Just a minor hiccup

Progressing really well, so decided to go to our usual monthly supper/dance on Saturday night. I guess the hokey-cokey is a no-no, but seeing as Lynn doesn't dance anymore, we only go for the social side. A good update on all things sport over the last month with my mate, Wallace and lots of chat with lots of people.
I knew it might be difficult, so we agreed a 2 hour maximum, leaving early ( and I wasn't on a promise ). It took me a good while to get in as my walking is still restricted, but I had a good night, a couple of pints and broke the ice with folk. Most are very good, interested but not intrusive. Some were not sure what to say but wanted a crafty look at the wounds - not that there was much to see as I wore a collar and tie ( very loosely as I'm still swollen ). Got home in time for Match of the Day, slightly knackered, but pleased I'd done it,

Sunday morning, the District Nurse arrives to dress wounds - all traces of alcohol removed from breath ( I dont think I'm supposed to go out unless I keep my leg raised ), Slight problem with wound on the chin, oozing puss ( no, not the cat ). Decides to send me to minor injuries at John Coupland Hosp. Doc is not too worried, thinks healing might be breaking down and gives me a course of penicilin, thats stuffed the Guinness then !! Resting for the remainder of the day - still little or no pain, but the boss says I've got to rest and she moves faster than me .

Monday morning, District Nurse removes dressing on leg - unsure about one of the skin grafts may not be taking , so. guess where we are going on Wednesday ? Yes, back to Birmingham to see the skin graft chap. Still, I;m still here and most of me is healing so no complaints from me

Thursday 3 November 2011

Latest Update

This coming home business has taken a little more out of me than I thought, but I am sleeping properly now,( especially the nights I get to have a can of Draught Guinness ), eating well, albeit a little slowly and my speech is coming on to the extent that I can hold a conversation for a short while ( after around 10 minutes, I run out of steam due to my brain wanting to talk and the lack of pressure within my windpipe, which is still healing, makes me run out of breath ). Nevertheless, I feel good, the brain is starting to get bored and I have had a couple of very steady walks around the bungalow. the stick has gone as far as inside the house is concerned, but I promised Lynn I will take it with me when I go for my walks.
Yesterday ,it was back to Birmingham for a review. Despite the long day, it was a resounding 'thumbs up ' from the surgeons, most of which came in to view their handiwork. They all seem very pleased with what they have done- I'm really impressed- There was a bit of banter between a couple of surgeons who reconstructed either side of my jaw. One side is still a bit more puffed up than the other, but the swelling is going down daily ( I could still frighten the local kids ). The leg is healing well where the section of bone was removed and the skin grafts taken.The District Nurses removed the last of the stitches this morning and then took pictures for their training sessions. I dont remember ever being photographed so much, all different parts of my body, but I have said from the start that I know that this is not common , so I am more than happy to be photoed , prodded . examined, whatever is required to help spread the knowledge.
It looks highly likely that, as soon as the wounds heal, I will have to undergo a course of chemotherapy, but , as the chemical analysis of all my parts has not yet been concluded, a final decision has not yet been made. However, if it is necessary, then they are going to try to get that job done in Lincoln to save travelling. We should know better next Wednesday.
Thats all for now, folks. Thanks again for all your support, it really has been overwhelming.
Kind regards
Chris

Sunday 30 October 2011

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

Thursday 27 October 2011

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

Monday 24 October 2011

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...

Friday 21 October 2011

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

Thursday 20 October 2011

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

Monday 17 October 2011

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

Sunday 16 October 2011

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

Saturday 15 October 2011

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

Friday 14 October 2011

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 .

Wednesday 12 October 2011

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 ?

Sunday 9 October 2011

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.

Sunday 2 October 2011

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.