Shake Rattle & Roll !!

Well 'Rattle' anyway. I'm taking a vast no of pills since the operation.

Below is a picture of my daily morning and evening dosage.

On top off these 26 I also take another two in the afternoon, and it's also recommended that I take 2x paracetamol 4x a day although I try not to.

I'm just a week in from the operation now so tomorrow I intend to start the slow tapering off in the morphine dose, which at present is 20mg morning and evening. So I will reduce to 10mg morning and evening for a week then down to 5mg for another week, then off completely. Most of the other pills apart from 2 will stop next week. I have to continue taking 'Gabapentin' as will help to reduce the phantom limp pains.

Healing is going well and I feel better every day, I think by this weekend I will be back close to normality. I'm feeling so good that yesterday I ordered my new car, which I should take delivery of in about 2-3 weeks. It has to be an automatic with an additional left hand side accelerator, as I have to drive it with my left leg.

I have had yet another cofrontation with the Essex Wheelchair Services today so I will post  details tomorrow.

Watch this space

Photo's

Now I'm back home I can upload photos,

so below you can see the view I had out of the ward window

This the Parish Church of St. Luke, Chelsea where Charles Dickens was married.

View of the park to the side of the church, every day this was packed with people sunbathing. You can see the cafe just inside the church on the left. This served fresh coffee, sandwiches, panini's, and cakes etc.

Its been 5 days since my surgery and the healing process is going well. My chest feels a little tender and tight, but I have very little pain, but this is due to the increased morphine dosage that I'm taking. In a couple of days I will start to reduce all the medication that I'm on tapering off to zero in a few weeks. That will be really good as last night, with the increased morphine, I slept for a straight 12 hours, and that really isn't like me at all.

For those of you who are interested this is wound across my back. It was taken in a mirror so it's reversed

The wound has dissolvable stitches, so the only stitches to come out are under the white dressing which is where the drains went in to the lung.

Home Sweet Home !!

As per the previous posting I was due for release on Saturday, and this would have been after 4.30 due to the Olympic Men's cycle race passing by the hospital, and the road closures which were in place.

After being moved down to the private room on thursday I was informed on Friday afternoon that I would have to move out due to an emergency case. Not wanting to spend another night in the main wards I asked if I could be discharged late on Friday evening. Just after this request I was sent down to X-Ray, and on the way I bumped into two of the surgical team who carried out the operation. Not wanting to miss an opportunity I spoke to them about a Friday evening discharge. They asked how the physio was progressing and I told them that all was fine and that I had been passed off that morning. They both agreed that Friday evening would be OK !! 

I had already spoken to my son Tom to check availability so I phoned him to confirm. The plan would be for Tom to get a train to Brentwood Station after work, and Jane would drive there to pick him up. Tom would then drive to The Brompton and collect me. to arrive approx 7ish.

This cunning plan would also mean I could relax in my own home and watch the opening of the Olympics. Unlike most plans this one went well, Tom and Jane arrived about 7.15 I was ready to go, having already got my prescriptions sorted with the pharmacy department, and my discharge paperwork completed with the medical team. We left the hospital and started the drive back to Tiptree, hoping to arrive by 9.00. The drive through London went really well, we went via Hyde Park, and up the Edgeware Road, picked up the A1 and headed towards the M25. The M25 was unbelievably empty, as was the A12, which we think was due to people staying in to watch the opening ceremony. On the M25 the Red Arrows flew over us at a low level in formation getting ready to fly over the Olympic stadium, brilliant sight.

We made it home dead on 9.00 and were able to watch all of the opening ceremony. Finally going to bed around 1.00. This morning I rose at 11.00 after a good nights sleep. I feel OK. just a little sore when I move around. My movements have to be slow and calculated. I have to do deep breathing exercises and coughing in order to bring up the residue of flem & blood that remains in my lung after the operation. This is most important and has to be done every hour to ensure that I don't get a lung infection.

I think I broke another record being discharged 3 days after a major operation, previously being told it would be a minimum of 5-6 days. When I spoke to the surgeon in the morning he said the the operation had gone extremely well. The tumour was removed with a good margin around it, also 4 other small nodules were removed. All the remove nodules would go to pathology for assessment. I will find out the results later.

So now I'm resting at home, and hopefully in a few days or so I'll be back to full strength. I have to mention the mountains of pills I'm on. 12 in the morning, 3 in the afternoon, and 14 in the evening. On top of those I have this morphine liquid for any instant pain relief, 10 mins after tacking it everything starts to float around for an hour or so, brilliant and cheaper than drinking !!

Operation over

Well that went well. After waiting and fasting on Tuesday until 3.00 I was taken in my bed to the operating theaters. On entry to the outer room where the anaesthetists knock you out, the surgeon was waiting to greet me. We exchanged a handshake and I said I would see him the following day. For some odd reason, and I don't know why, I got chatting to the anaesthetist about tri-athlons. He apparently used to do them a few years back. Whilst we were talking he was putting a canula in the back of my left hand, and then suddenly there was a mask over my nose and mouth, and the next thing I knew it was 10.00 and I was in the High Dependency Ward.

I had a bad night in that I couldn't relate to time. It was really weird, the night seemed to on for ever. When eventually the blinds went up and we were woken at 6.00.  I was in a little pain, but not to bad, fortunately a member of the pain relief team came and adjusted my pain treatment. I went on to oramorth which is morfine in a syringe, and it's just squirted into the mouth. It starts to start working in about 10-15 mins. So that was sorted.

Later in the morning around 11.00 two young physio girls came and got me out of bed, to mobilise me. Bearing in mind I only have one leg, and also had the operation some 18 hours earlier, and It was a fairly major operation, I wasn't to pleased. Anyway I persevered and tried the crutches without success, it was to painful. So into the wheelchair and round the hospital. They left happy. In the afternoon they came back and we had another session, but again the crutches were to painful.

Today was totally different, I felt really good, devoured a large breakfast, and was feeling up for the physio girls. Oh I forgot, yesterday they also had me doing deep breathing exercises to release the mucus in the lungs. We also did this today and I managed to clear myself. I then did a circuit of the hospital on my crutches, albeit slightly slower than usual.

In the High Dependency Unit there is one nurse to two patients, and I have mention my nurse because she was without doubt one of the hardest working people I have seen. Her name was Catarena Soares, and she did 13 hour shifts, never complained, was always there, nothing was a problem, and she worked continuously for the full 13 hours. I can't praise her enough, and she helped me through a rough day on Tuesday.

This afternoon I had lot of the tubes removed from the various bits of my body, and finally at around 5.00 the last of the tubes were removed. It's not just the tubes, I also had various pumps and drainage equipment attached to them, so getting around was a bit of a challenge with them. I had to go to the X-Ray department twice, once with the lung drain line in and again after it was removed.

Also this afternoon I was discharged from the High Dependency Ward back to the original one. Except that I was given a private room, with a TV, This was because they thought it would give me more room with a wheelchair. That was nice of them.

I also saw the surgeon this afternoon and he said I could  be discharged on Saturday, so my son Tom has volunteered to drive me back home, which is a slight problem as the Olympic cycle race is coming past the hospital twice on Saturday and a lot of the roads are closed all day, so we have decided to leave it until it's over and leave at 6.00pm.

So now it's a bit more physio for the next two days, then home.

It's a New Dawn, It's new Day

That would make a good line for a song !!   Anyway, late yesterday afternoon the surgeon, Mr Simon Jordon, came to see me and he apologised for the cancellation yesterday. He explained that he had to do an emergency operation on a 9 year old girl. However he had found a possible slot in the theater list for Tuesday and would be prepared to come in and do the operation. He normally only operates on Mondays and Wednesdays.  There are still other factors which could affect this. He needs to find an anaesthetist, and this morning the theater team came to see me to explain that if other operations took extended time then I would possibly be cancelled.

I am showered, and gowned up. Consent papers signed, Nil by Mouth since midnight, and ready to go to theater for the operation to remove the tumour in my left lung.

Fingers crossed !!

Operation Postponed !!

I was due to go to theater this afternoon, but due to an emergency case it has been rescheduled to Wednesday. The emergency case is a nine year old girl, so obviously this takes priority. I under stand that fully. So I have today and tomorrow to relax and enjoy the lovely food here in the Brompton Hospital, as it's not worth going home for such a short time.

The good news, however, is that the Blue Badge has arrived at home so now I can start causing mayhem with my parking. I think I might start with my opposite neighbour, who for a reason I wont divulge, has offended us. I'll just get the Mondeo, which we don't use that much at the moment, and park it outside their house with the Blue Badge visible through the windscreen.That should annoy them !!

So that's the news for today, Monday. I guess there wont be much to post until after the operation. As I understand it I will be in a High Dependancy ward after the operation for a day or so, in order that I can be closely monitored.

For some odd reason I'm unable to upload photos from my phone to the laptop. So no pics at the moment. I'll try and sort it out. Think I might need 'Abbots' help.

And just as an aside, the ward I'm in (on the 5th floor) faces the beautiful Parish Church of St. Luke, Chelsea, where Charles Dickens was married 2nd April 1836. It is set in lovely grounds with many trees called St Lukes Gardens. Further back on the horizon is the 'Shard' and views of Big Ben and the Houses of Parliament. You couldn't get better if you paid. Pictures to follow when I can upload them.

After lunch today I went down to the entrance lobby and spent an hour sitting in the sun in the outside atrium. I'm now a lovely shade of pink !! on arms and face. Why didn't someone tell me not to sit in the sun!!

I also saw the Macmillan nurse and I asked hin how long after the operation would I go home. He said on average about 5 days so that would make release day Monday/Tuesday. As I'm not average I will aim for Saturday and see how it goes.

The Royal Brompton Hospital

My son Tom very kindly came home on Saturday in order to drive me to The Royal Brompton Hospital on Sunday.  Well actually he ran from the Barbican in London to Tiptree in Essex. Just a little jog of 55 miles in 7 hours. He treated this as a training run for his 131mile "Ring of Fire" run around Anglesey. This is his longest run to date, and should stand him in good stead for day 2 of the run which is 65 miles.

Anyway, we left home at 12.30 today to arrive at about 2.00. We hit really busy traffic going through London, and got to the hospital about 2.30, so not to bad. Tom drove to the front entrance of the hospital and we all disembarked. There were no parking spaces available, so I had a word with the security guy and he said it would be OK to leave the car where it was for about 20 mins, so was helpful. We got to the Ward and I was allocated a bed in room 1 with 5 other guys, they all seem fine.

Talking to the ward nurse, I was informed that I was not on the operation list for Monday, this was a little disappointing to say the least. I saw one of the doctors in the team and he said that possibly I would be having a CT scan in the morning, and the operation in the evening. So I now have to wait for more information.

I'll post an update as and when I know more.

As an aside, the evening meal was very good, a clear Chilean noodle soup, smoked haddock pasta bake, followed by really nice strawberry mouse. Breakfast is a choice of eggs, bacon, sausage, beans etc. Can't wait !!

 Pride comes before what ?

You got it  -  a fall  - Well in my case 2 falls !!

It had to happen at some time.

Today was the last day of my week of training and physio, and Jennifer was intent on working me on the slope. Whilst I was warming up by walking up and down the gym, Jennifer watched and suggested that possibly the prosthesis was a little to long. When you put the leg on it takes a few minutes for the stump to settle in the the socket to its final position. So I put a 10mm sole in my good leg shoe to effectively shorten the prosthesis. Off we went to the 'infamous slope', about 40 meters down the corridor. Walking on the flat to the slope felt really easy, the 10mm inner sole made a real difference, the leg moved and performed much better than yesterday.

With the mechanical adjustment that Dave made yesterday, and the 10mm today, it just goes to show that small amounts of tweaking can make a huge difference. So next week when I'm in hospital Dave will shorten the leg ready for me to collect in a week or so.

So we arrived at the 'infamous' slope. After a couple of attempts going down the slope it it started to really improve, this was due to help from Jennifer teaching me to control my stump action and hip movements. I had about 15 mins on the slope and I was pleased with the improvement. We returned to the gym and went out the side door to an area set up with slopes, stairs, and various different surfaces. I attempted one of the slopes without a problem, both up and down. Jennifer then moved me to a short slope with a raised brick topping leading to a pea shingle path. The slope was fine, but whilst turning around on the pea shingle path I had my first fall, this was due to the leg folding under me. It was my fault for not maintaining pressure on the leg to lock it whilst turning. I had been waiting for the first fall all week, as I knew it was going to come at some time. Anyway no harm done,  I got up and dusted myself down. Interestingly it didn't hurt my stump at all, so that pleased me.

We returned to the gym to meet up with Claire, an Occupational Therapist, who was going to take me for an hours session dealing with being at home with a prosthesis. Jennifer introduced me to Claire, who said that we would be going to another building, and therefore I should take all my bits and pieces with me. I turned to pick up my phone and 'crash' down on the floor again, my leg had folded under me, landing me on the knee of my prosthesis. Again it didn't seem to hurt anywhere so I picked myself up and off we went.

It was a good 300/400 meters to the other building, going around the leisure center and swimming pool. The ground changed from paving to tarmac to a long slope downhill leading to a building containing a flat. I managed to negotiate all the surfaces well without a fault. At the flat I had to use the kitchen to cook a meal. This was to test how I would adapt to moving around in a home environment. Claire had put all the ingredients for a pasta meal in various cupboards and I had to retrieve them, cut them up to make a pasta sauce, cook the pasta, and serve it up. Clean up, and wash the utensils. No problem !

Half way through the session Jane phoned to say she arrived, so Claire kindly went to find her so she could join us. We left the flat to return to the gym, and as we went past the swimming pool Claire took this video of me

I'm really pleased with progress, it's only been 5 days, I know I look a bit tense, but this was taken after wearing and using the leg for nearly 3 hours. When I get the leg home I can practice at leisure, and I know I will improve until it becomes second nature. I have been told that to achieve this level in a week is very good, and not many people do.

A really big thank you to Jennifer and Claire for their work in enabling me to achieve the level I have.

Hard work pays off

Today's two sessions carried on from yesterday. Basically lots of practice doing what I've been taught. For some of the time Jennifer took me outside to introduce me some varied terrain. I have to say that I enjoyed the variation of walking on tarmac and uneven paving stones, it makes you more aware of your surroundings, and in my case to concentrate on the control of my leg. I felt pretty confident, so I was pleased with the sessions.

During the afternoon session today I was walking up and down the gym with two sticks, Jennifer came over and I commented on how I found it ok to walk just using one stick, but having the other just raised slighty above the ground, like a kind of safety net. Promtly Jennifer took the stick off me and said off you just use one stick. Amazingly I walked really well and with confidence. It made me focus more on ensuring that I didn't make any errors. In the last session tomorrow my aim will be to gain more confidence using just one stick.

Following on from yesterday I also attempted to walk up and down slopes again. Going up presented no problems but coming down was difficult, I could not get the knee to bend consistantly. However, during the afternoon session Dave the prosthetic technician came in and we tried some adjustments to the angle of the foot. Unfortunatley we could not improve things, however, Dave has my leg next week while I'm in for the operation on my lung, and he will finish off the mounting on the socket to the mechanism and check the whole assembly over.

On a more positive note I have received several very nice comments from people who have watched my progress over the past few days. Mainly how well I walk with the leg, and also how quickly I seem to have adapted to it. Some can't believe that I have only had 4 days of training. So Hard work does indeed pay off !!

Tomorrow I will try and get a video of me walking with one stick to post it.

Watch this space to see my progress

Another day in the Office !!

Just a quick update on progress. My physio, Jennifer, is really good, she doesn't let me get away with anything and works me really hard. Having said that it, it is producing some really good results. The limb fiiting team told me she was the best, and I think my rapid progess is proof of that.

Monday's 2 sessions were really just an introduction, getting used to having a prosthesis on and just learning the basics by walking up and down between parallel bars getting used to weight transfer from one leg to another.

Tuesday saw a vast improvement with me walking with two walking sticks. I managed to walk up and down the corridor outside the gym several times a distance of approx 30m each time, and coping with general flow of people. My walking style was a little shaky at times, but I was pleased with the improvement over Monday. My main difficulty was controlling the swing of the leg forward making sure the leg was locked in the straight position before putting my weight on it. I also did some balance control work in the gym by standing my good leg on a half ball and trying to transfer my weight on to the prosthesis, sounds easy, but I found it tough going.

Today, Wednesday, saw a fantastic improvement. Walking up and down the corridor, albeit with sticks, was much easier. I found that my stride length was more consistant, and I was more relaxed. I could walk without looking down at my legs, just concentrating on the feel and subtle sound of the limb moving. It's most important to make sure the leg is locked out in the straight position before transfering your weight on to it, if it's not the knee bends and your on the floor !!  I also did stair work today which went really well. However when we did slopes it was a different matter. Going up was fine, comming down proved to be difficult. This something I will work on tomorrow.  All in all a very good day, I'm really pleased with the progrsss that I have made in three days.

It's interesting, that with two normal legs you don't think about walking and moving around. With a prosthesis on you become aware of how complex walking is, and how much information you have to compute to do what is essentially a simply task.

Thanks to the Prosthetics Team

I have to say a big thank you to Dave, and the rest of the team in the Limb fitting center, because my rapid rate of progress is largely due to the fact that my socket has proven to be excellent. It's a really good fit and is comfortable to wear. Jennifer, my physio asked me today where on a scale of 1-10, would I put my sockets comfort level.  Today comfort level was a 10, I said that I could have worn the leg all day. Brilliant !!

On the inmates story, today after my second training session, the "encyclopedia" gave me a 20 min teach in on how to walk up and down slopes, and to disregard what the physio had taught me. That's impressive from someone who's got two legs and has never walked on a prosthesis !!  But then I did tell you yesterday that he knew everything.

Rehab - Day 2

Most importantly before the leg stuff, I had a call from Jane this morning to say that Mr Jordan's secretary had rung. I am booked to go into hospital on Sunday for the first lung operation on Monday. This is brilliant news as it hopefully marks the beginning of the end.  I only saw Mr Jordan on Friday so this is pretty impressive.  The service which I have received from the NHS has been absolutely incredible, I don't think it would have been bettered privately. It just goes to show that when you have a serious, or life threatening problem, the NHS delivers.


Odd inmates


As you know I'm in the Rehabilitation Ward, and if any of you read my posting on the 2nd June headed "Hospital Admission Day Comes" you may recall that I spent one night in here before my first operation in November last year. You may also recall that I made reference to the 'odd inmates'


My reference to 'odd inmates' wasn't a one off.  For some reason this week there are only 3 of us in Rehab, and you've guessed it, I'm in with 2 oddballs. Both of my fellow inmates have verbal diarrhoea, but in different ways.

Inmate No 1 is an overweight (I'm guessing about 25 stone) Welshman with problem shoulders. Is also probably the most negative person I have ever come across, continually moans about his medical condition (most of which is probably self induced due to being overweight) Hates needles, which doesn't help when he has to have blood samples taken regularly and the nurses can't find a vein in his fat arms. He also drones on in a  broad Welsh accent when on his mobile phone which is really annoying. I think he may be in the Welsh Olympic Team for longest telephone calls containing the most drivel. I've heard several times about what he's had done and also what will be done this week, he repeats everything over and over again. He can't sleep at night despite downing copious volumes of sleeping pills, and therefore sits up all night sending emails to people who don't want to receive them.


Inmate No2 is wheelchair bound and has problems with elbows and hands. He does not stop talking !! He knows more about everything than anybody in the world !!  I think he may be a bloody encyclopedia !  He's got opinions on everything and lets us all know about them. I went for a test drive in a new car today and when I got back he told me what car I should be buying and why !! You don't want to buy that car, you want to buy this car !!  he also coughs day and night, blaming the cough on everything except the vast quantity of cigarette's he smokes !


If I make it to Friday it'll be a miracle, so if anybody out has any cyanide pills please send them by post to me c/o The Rehabilitation Ward, The Royal National Orthopaedic Hospital, Stanmore. HA74LP


On the new leg training, it's going well, but really hard. I'll do a more detailed post tomorrow.

ps. Ive just overheard the Welshman repeating his medical and life history to another one of the nurses, and blow me over with a feather, he's 'GAY' and one of his son's is in prison for having sex with an under age girl (13)  If he has sons then he must have been straight at sometime !!

I told you the inmates are ODD !!

First day in Rehab !!

Intensive leg training is tough !!  It's not going to be easy. Today I had 2 sessions, one in the morning and one in the afternoon. This will be the pattern for the rest of the week, with sessions lasting up to an hour and a half.

I found today's  sessions really hard. It's having confidence in the leg that it will do what it's supposed to do, when you want  it to.  Also if you stand on one good leg you can balance because you can compensate with small foot movements to remain balanced. With a prosthesis you can't do this because it's inert !!  Anyway tomorrows another day, and I know I will improve and progress further.

I'm also going for a test drive in what will possibly be my new car. I have a salesman picking me up at 1.30 for a test drive and inspection.

Any guesses what make ??

Another update tomorrow on progress.

Fantastic day !!

It was looking like a really busy day with two hospital appointments, but with good planing all went well. The taxi picked me up early at 6.00and we had a relatively traffic free drive to the Royal Brompton Hospital arriving at around 8.30. I had phoned my son Tom who lives in the Barbican and he arrived ten minutes after me. The taxi went off and parked up to await my telephone call later.

On arrival it was very quiet and I found one of the out patients receptionists who said that I needed to register as a new patient at 9.00 in the main reception area before going to X-Ray. This we duly did, and then followed the signs to the X-Ray Department. I checked in at X-Ray reception and within 5 mins I was in and the job was done. Now off to Outpatients to see the surgeon.

Unfortunately the surgeon, Mr Simon Jordon, was running late and we didn't get to see him until close to11.00. The meeting went well and he outlined what the surgery would involve. I thought that he would do both lungs at the same time, but not so, only one side at a time. So the left lung will be the first to be operated on as it has the largest tumour, which is about he size of large cherry.

The operation involves making an incision under the arm and down the side. The ribs on the side are opened up to allow the surgeon to get to the lung. Basically the surgeon flattens the lung, bit like squashing a plastic bag flat, and then he can feel any lumps or nodules (tumours). The nodules are then isolated and removed with a margin of lung. the wound is repaired and that's it done. In my case the surgeon doesn't think it will make to much difference to my lung capacity, which is good news.

The first operation will be scheduled for about 2 weeks time, I will receive full details by post next week. This fits in well as I have a weeks physio and leg training booked in at Stanmore next week. Tom and I left the meeting on a very positive note. We now had to go to a pre-admission clinic and I asked one of the Clinical Nurses who had been in the meeting where this was. I mentioned that I had another appointment at Stanmore and he said that I could have the pre-admission tests done on the day I came in. This was really helpful as time was getting tight.

I rang the taxi which arrived in a couple of minutes, Tom got me loaded in and we said our goodbyes. Tom left to get the tube back to work, and we started our short but slow journey to Stanmore. The traffic was pretty bad, and didn't thin out until we were nearly at Stanmore, however we arrived 3/4 hour early which meant I could grab a coffee and chocolate bar before I started the leg fitting.

Dave, the prosthetic technician, arrived early and showed me my new leg, and here it is !!

A close up of the knee mechanism

After an initial fitting and a bit of tweaking I had my new leg on, and here is a video of me taking it for a test drive.

This was one of the better attempts, but with practice I know I will be walking normally.

A big thank you to Dave, Ruth and the guys in the limb fitting centre

a Brilliant job !!!

Next week its Monday to Friday in Stamore for physio and training with leg.

Watch this space for updates !!

Just as an aside I received a copy of the Surgeons report to my local GP, and I quote :-

"Mr Payn is now 6 weeks down the line from the amputation and I have to say he is making Phenomenal progress. His stump is completely healed, and all swelling has resolved. He is due to start limb fitting on 6th July"

More Good News !!

The confirmation letter from the Royal Brompton Hospital came this morning. It says chest X-ray 9.30, Consultation approx 10.00. Followed by a Pre-Admission Clinic.

The fact that I have a Pre-admission Clinic means that I will be in possibly next week, This would mean putting off the week in the Royal National Orthopaedic for limb fitting and training. Having said that I think the surgery has to take priority. We will find out full details when I have the meeting with Mr Jordan Friday morning.

So really Good News.

I will do another posting late on Friday with all the updated information.

Good News !!

This morning I had a call from the Oncology Team at UCL Hospital to say that during the meeting with the Surgical team it was agreed that an operation would be possible. 

About 15mins later I received a call from the secretary of Mr Simon Jordan,Consultant Thoracic Surgeon at the Royal Brompton Hospital, London. I have an appointments on Friday morning for a chest X-ray at 9.30, and with the consultant at 10.00.

This conflicted with the limb fitting appointment at Stanmore at 10.30, so I have arranged for this to be changed to 13.30. Thanks to the Stanmore Limb fitting Team for their flexibility.

How do I get to these early London appointments when you have one leg and 2 crutches !!

and you need to travel during the rush hour.

After some thought, and requiring to take the least stressful path, I decided that I would take a taxi from home to the Royal Brompton to arrive for 9.00. The taxi will park up and wait for me. My son Tom will get the tube from the Barbican where he works and meet me at the hospital and make sure I get the the right places on time. After the appointments Tom will return to work, and I will get the taxi to Stanmore for my 13.30 appointment. Jane will drive to Stanmore to meet up with me Friday afternoon. Sorted !!

Phantom Limb Sensation/Pain

Up to now I haven't mentioned Phantom Limb Sensation/Pain. It's a peculiar thing that occurs when you have an amputation. Firstly you have the sensation that the limb is still there. In my case I can still feel the whole of my leg, my foot and toes. Strangely I am able to swing my leg from side to side, but can't flex the knee to straighten it (the phantom limb is bent back at the knee)
Also I can't flex the ankle or wiggle my toes.

Secondly I have phantom limb pain, mainly, in the foot. The pain is in the form of pins & needles. It's always there and sometimes, mainly later in the day, it gets pretty excruciating.

There is very little known about Phantom Limb Pain. But it would appear that the brain and nerve endings that have been severed retain some sort of memory. During the last weeks prior to the amputation, the tumours were squeezing and putting pressure on the main nerves running up my leg, and I had pins & needles in my lower leg and foot, hence the phantom pins & needles.

Having said all that, there are things that can be done to address the problem. There are two types of drugs that are used, and I have been put on one called Gabapentin. Gabapentin provides significant pain relief in about a third of people who take it for or chronic neuropathic pain. So hopefully in the not to distant future it will start to work for me. It can take 2-3 months to work. Failing that there are other alternative drugs to try.

One other treatment is called "Mirror Box" therapy.

It requires you to place a mirror between your legs, so that when you look in the mirror you see a reflection of your good leg, which now appears to be the amputated leg.

The following video demonstrates the proceedure.

http://www.youtube.com/watch?feature=player_embedded&v=YL_6OMPywnQ

By moving your good leg/foot/toes it appears that your phantom leg is moving, and by mentally moving your phantom limb in unison with your good limb, it tricks your brain into thinking the phantom limb is moving. By doing a series of movement exercises twice a day for 4-6 weeks you can free up the locked elements of your phantom leg. In my case I am working on unlocking the toes, ankle, and finally the knee.

I have only just started this treatment so I will update the blog as and when changes start to appear.

Polycentric ??

What is he on about I hear you mumbling ?

Has he completely lost it !!

Polycentric - Having many centres - OK got that !!

And in the case of my new prosthetic knee, polycentric, means that my lower leg and foot will rotate around the knee with differing radii depending on position.

This will be my new knee, the Total 2000 made by Ossur

Thanks to either Dave or Ruth at the Limb fitting Center. One of them read my last posting, and very kindly did a comment and advised me of the knee that I will have.

For those of you out there who don't know me, I'm a design engineer. So when I first saw this knee I was pretty impressed with it. It is beautifully made, with a lot of thought put into the aesthetics. Mechanically its very cleaver in it's simplicity. I love it !!

As you can see from the photo, its very mechanical with lots of pivot points and connecting arms. It also has swing control adjustments through a 3-phase (3-valve) hydraulic system.

It has a geometric over center locking system, which means standing on it is simplified for the user.

One of the main advantages of this polycentric system is that the leg length is shorter when swinging, this means there is less chance of the foot catching the ground when walking. This makes walking more natural.

From my point of view, this knee combined with the Trias foot, means that with practice I should be able to do most of the things that will make my life normal. Walking at varying speeds from slow to fast will be possible due to the inbuilt hydraulics. Walking over varying terrain, slopes, steps etc will also be possible, so hopefully country walks will be back on the menu. Kneeling is also simple. The Total 2000 knee also allows for cycling, so that's good.

Anybody interested in more technical stuff about this knee, click on this link - Total 2000

It came at Last !!

Friday 6th July, day 1, the start of my limb fitting.

My appointment was for 10.45 and we arrived early at the Louis Fleishmann Building at the RNOH Stanmore. After checking in I had a meeting with Dr Sedki the consultant in Rehabilitation Medicine. This lasted an hour or so during which time we went through a range of things relating to amputation and prosthesis, and more specifically my expectations and requirements for the future.

After this I was introduced to Dave and Ruth, Dave is to be my prosthetic technician, and Ruth is a trainee working with him. There was some discussion about the type of prosthesis and foot that I would be fitted up with. However me being me I didn't take notes and by the time I got home I had forgotten most of what was said.

I do remember the discussion about he foot and it is to be a Trias manufactured by OttoBock

As you can see it is a Carbon Fibre foot that is designed to closely emulate the action of a normal foot. Of course you wont see this as it will be fitted into a silicon plastic foot.

Anyone interested in reading a little more about how this foot works, please click on this link

Trias Foot

Anyone interested in seeing a very short video (10 secs) of how this foot works, click this link
Trias Video

This meeting was followed by Dave & Ruth taking me off to have a cast taken of my leg in order that a socket could be made for next Fridays visit.


This is the kit required and comprises, cling film, tights, plaster impregnated bandages, elastic binding and various measuring implements.

 The start of the process involves being wrapped up in clingfilm (forget the funny remarks, I've heard them all) this is to ensure that the plaster cast does not stick to your skin, under wear, and more importantly the hairs on your leg. 

Stage 1 completed

Stage 2,

Tights on. Also several fairly tight elastic straps.

Stage 3 - Getting plastered !!

The finished cast removed.

By filling this cast with plaster a mould of my leg will be produced. From this mould the technicians will produce my socket which should be an exact fit for my leg.

I've simplified the process so not to make it to technical, however, there is a lot more to it, and the technicians job involves a lot of precision in order that the socket fits well.

As I didn't get the details of the knee prosthesis I will try to speak to Dave on Monday so I can do a blog Monday evening.

Watch this space !!

Limb Fitting Starts !!

Tomorrow (6th) sees the start of my limb fitting sessions. This is what I have been waiting for since the operation 6 weeks ago. It's very difficult to describe what it's like having only one leg. To move you have to use crutches, and this limits what you are able to do. For example you can make a cup of coffee but you need someone to move it for you. I've mastered most things, but moving cups of coffee still defeats me.

So tomorrow at 10.45 is the start at the Prosthetic Rehabilitation Unit, at Stanmore. I imagine that the first session will mostly be taken up with taking moulds from my stump in order that a socket can be manufactured ready for my next weeks appointment. I'm also hoping that I will have time to have a look at what types of prosthesis are available, and discuss my requirements in terms of use.

Typical Modern Knee Prosthesis
The socket fixes to the top, and the foot as shown below
fits to the bottom



Showing the selection of feet available

Monday 9th sees the Oncology team meeting with the surgical team to discuss the removal of the two small tumours in my lungs. So I'm hoping to have some news soon after to report.

My second Limb fitting session is scheduled for the following Friday when I will be fitted up with a leg ready for my full week of intensive training and physio starting the 16th July. After this intensive week I'm hoping to be walking on two legs, and this will be the start of getting back to some sort of normality, and not having to rely on people to do things for me.

Boring !! Boring !! Boring !!

Today's highlight was measuring out lawn weed killer solution in to a watering can, so that Jane could treat the front lawn and hopefully get rid of all the weeds that seem to have taken up residence over the past few weeks.

The last couple of weeks have been pretty boring just waiting for this coming Friday the 6th

 when I have my first limb fitting.

Other highlights over the past few days, not necessarily in order of importance :-

• Waking up
• Going to bed
• Breakfast
• Lunch
• Evening Meal
• Watching TV
• Getting Attendance Allowance
• Council tax Rebate of £93.33p
• Insurance claim cheque for £270.00p 

Of course it's not all boring, on Mondays we look after 2 year old "Harry" our niece's youngest son. He spends the day keeping us on our toes, and generally having a good time.

Watch this space for an update after my Friday limb fitting !!