Six Treatments in !!

Sunday 23rd December and I have just returned home after my 6th treatment. The reason I had a treatment this Sunday is to balance out the missing treatment on Christmas Day. I also have a treatment on Saturday 29th December to cover for Boxing Day, and also Saturday 5th January for New Years Day.

Interestingly I was talking to one of the Radiographers yesterday, and my treatment this time is different from the Radiotherapy treatment that I had prior to my first tumour operation last year. The treatment last year was pre operation and the machine doing the treatment used electrons as the X-ray beam. This time my treatment is post operation and I am being treated with a Photon beam. The photons are generated by the electron beam being fired at a tungsten target within the machine, this causes the electrons to dissipate their energy as photons. The photons, which scatter in all directions, are then re-focused into the beam which is then directed at my leg. All this is happening at close to the speed of light (186,000 miles per second) which for us mere mortals is somewhat difficult to comprehend. But it works !!

This a picture of the actual machine, also you can see the treatment table bottom left. This is almost identical to the machine I was on last year. A little worrying to see the workman's step ladder against the back wall, but I guess these are needed to do maintenance on the upper parts of the machine, gives you an idea of the size of the machine.

By December 31st I will have completed 11 treatments, so 1/3rd of the way through. My final treatment will be on Wednesday 30th January 2013.

Radiotherapy Starts

Yesterday (Monday 17th) saw the start of my approximate 7 weeks of radiotherapy. I had been given two late appointments for Tuesday and Wednesday (around 3.30) which would have meant possibly hitting the evening rush hour for the journey home. However on Monday the team very kindly were able to re-arrange both days, Tuesday to 12.30 and Wednesday to 2.10. So a big thanks to them, it is really appreciated !!

Monday saw my first appointment and it was nice to meet up again with some of the staff who had treated me last year. Considering the number of patients they treat it was nice to be remembered and to chat with them. This time round the positioning of my leg for treatment is a little more time consuming and the team take extreme care in ensuring an accurate line up. 

The machine that delivers the treatment is also fitted with two arms, one on each side of the main body. These are an X-ray transmitter and Receiver and you can see these on the pictures below :

X-Ray arms in retracted position

Machine rotated and X-Ray arms deployed

This X-Ray ability allows the operators to instantly take an X-Ray of my leg after I have been lined up using the laser system. Back in the control room this X-Ray is then overlaid on top of the CT scan image taken during the set up and planning procedure. Any slight inaccuracies can then be adjusted by automatically moving the table I am laying on. They are required to position my leg within 1mm every time I have a treatment. The technology which delivers my treatment is very impressive as are the highly trained operators that use it.

My Christmas day treatment will be on Sunday 23rd, Boxing day treatment on Sat 29th, and New years day treatment on the Sat 5th Jan.

So now I've completed 2 treatments, it's only 31 to go !!

CT Scan and a Plan Check

Next Wednesday I go to The new Macmillan Centere at UCLH for a 3 monthly routine chest CT Scan. My last chest X-Ray a couple of weeks ago looked good so I've no reason to expect a negative result.

Also I have been requested to go up to UCLH Radiotheraphy on Friday 14th for a Plan Check. This means a run through of the programme that has been designed for my treatment in terms of positioning for the Radiotheraphy Machine delivery system. Positioning is very critical and must be within 1mm, so they need to be sure that all is in order before treatment starts on the following Monday (17th)

Radiotherapy

Today I was booked in for the first fixture fitting at UCLH at 12.00. On arrival at the department I was informed that there would be a 20 min delay. That didn't seem to bad, so we sat down in reception and waited.

At 12.20 I was called through to the fitting room. I recognised the two staff, and in turn they recalled me from last year. This time round the type of fixture would have to be different as my stump is fairly small. They decided on a method using what looked like a large pillow size bean bag. I laid on the table with the bag under my bum and also had my leg resting on it. They then packed the bag around my waist area and also around my leg, then they attached a vacuum line to a valve on the bag and evacuated all the air in the bag. By evacuating the air in the bag it moulds itself around your body and leg. This then becomes your location fixture for the treatments. It's fairly simple but very effective.

This process had taken about 30 mins to complete, during which time one of the CT scanning staff had come in to say that I could have the second part of the process also completed today as they had a window in their programme. This was really good news as it meant that I wouldn't have to come up to town again for the Friday appointment. I then moved to the CT room and was put on the scanning table and laid in the fixture. At this point it's a fairly complex set of stages of lining my leg up accurately with X,Y, & Z lasers (left and right, forward and back, and up and down) Once they are happy with the alignment which has to be +/- 1mm they tattooed a series of small dots on my waist area and also my leg. These tattooed dots act as reference points when I am on the Radiotherapy machine so that I can be accurately positioned for treatment. Following this setup I was then given a CT Scan.

This CT scan will now be used to build the programme for my treatment, including the angle and shape of the electron beam, and also the dosage each day. I have 33 sessions planned starting on Monday 17th December at 12.00. With Christmas and the New Year in my programme I will probably have to have treatments on Saturdays to cover for lost days during the week.

Treatment Starts

Just taken a call from the Radiotherapy Department at University College Hospital to say that my first appointment for the fixture manufacture will be tomorrow (28th) at 12.00. Followed by the second appointment on Friday. So that's good news

The Varian Rapid Arc Radiotherapy Machine

During the second appointment I will be placed in the fixture and a enhancement die pumped into me whilst a CT scan is taken. Lasers will be used to set my leg up in the correct position. This scan will then be used by the Oncology team to precisely plan the treatment programme.

So then it's 30 treatments, Monday to Friday for 6 weeks.

Updates will follow !!

Oncology Appointment

Yesterday (Friday 23rd) I had an appointment to see Dr Seddon the Oncology Consultant at The new Macmillan Cancer Center, University College London Hospital.

I don't always see Dr Seddon as she is the head of the team, however, I had seen her on the 22nd Oct  prior to the operation to remove the tumour, and she had indicated that we would discuss the possibility of post operation Radiotherapy at my next appointment.

My appointment was for 11.45, and we were called in a little late around 12.05. Dr Seddon went through the pathology results of the removed tumour, most of which went over my head as it's all in medical speak. We looked at the CT Scan of my leg and it all became a little clearer. It showed the tumours, there were 2 of them adjacent to each other. In one position the tumour was pretty close to either the main vein or artery, so the the margin in this area was small. Surgeons like to take a good margin around the tumour to ensure they get all the cancer cells.

Dr Seddon was pleased with the surgery results and suggested that it would be sensible to follow a 6 week programme of Radiotherapy to reduce the risk of the caner re-occurring. I was of course happy to go along with this, and the wheels were put in motion. This means daily trips to UCLH at Euston Square Monday to Friday for the 6 weeks. I should be contatcted next week to go along for the 2 appointments which are required for the fixture manufacture. If this happens next week the radiotherapy should start the following week, or possibly the week after. All being well this course should be finished by the end of January, I then have to wait a few weeks for the stump to recover before I can go to Stanmore to get a new socket made for my prosthetic leg. Then the process of learning to walk again starts.

Before I left Dr Seddon sent me down for a chest X-Ray to make sure all was well in that department. The guy doing the X-rays was really nice and he allowed me to have a look at the result. Nowadays it's all digital and instant.

I had a really good look over the X-ray and to my untrained eyes my lungs looked good. But what do I know !!  On Monday the 26th November I have an appointment in London to see Mr Skinner the Surgeon for a follow up check on the operation.



Clips Out !!

14 days after the operation and today was clip out day. I had an appointment with our practice nurse at 11.00. Last week when I had seen the doctor about the infection he had requested that he be bought in prior to the nurse removing any clips so that he could just check over the wound.

The nurse removed the dressings put on in the hospital and revealed a pretty neat wound that had healed nicely. The doctor checked the wound carefully and gave the OK for all the clips to be removed.  I guess there were around 30 clips and the nurse started by removing every other clip. They do this to ensure that if there is a problem with the wound at least it wont split open.

As I mentioned in previous posts the surgeon cut along the old wound line, and as you can see it's a really neat job and when it's healed it'll be hard to see.

As a Point of interest, the crease below the wound is where the tumour was. So now it's been removed I'm left with a huge dimple !!  I think in time as the healing takes place this will smooth itself out.

I have a meeting next week on Friday 23rd with the Oncologist at University College London where we will look at the the Histology results on the tumour margins. This will determine what future treatments are necessary or not. On Monday 26th I have an appointment with the surgeon for a check up on the surgery.

So I'll be reporting as soon as I have further information.

Rest & Recuperation

After coming home last Thursday I started to rest up to assist the healing process. Unfortunately over the weekend my leg started to get tender, and by Sunday it was swollen and pretty painful. By Monday morning it was time to get professional advice so I made an appointment to see the GP at 3.00 in the afternoon. His diagnosis confirmed my suspicions that I had an infection.

So it' a week on Antibiotics, and back on my max dose of morphine for a while to help with the pain. That should sort it out !! I'm due to have the clips out next Tuesday (13th) and this may well have an impact on that. It's possible that I'll have some removed in the area not affected, with the remainder a few days later. Have to wait and see.

I said to the GP, that I thought that I had now all the money back from the NHS in terms of operations etc, that I had paid in NI over the years. So this was now possibly the time to stop !!  He gave wry smile. I don't think he took me to seriously.

I'll do another post when there's more to report.

The Tumour !!

I forgot to mention in yesterdays post that when I saw one of the surgical team I asked him if he had been in on the operation. The answer was yes, so I asked him about the tumour. Apparently it was about the size of a tennis ball, so not exactly small. When you consider that 6 weeks ago I had no idea it was there, it gives you some idea how quickly it had developed, and that's pretty frightening !! Lets hope it the last time.

The size of the tumour would account for the rather large dent I have in the back of my stump, but I guess that will balance out in time as the healing process kicks in.  Another interesting thing is that Mr Skinner, the surgeon, made the incision along the the old scar line so I'll only have the one scar, not that having two would bother me. Also they used clips to close the wound, and I'm happy with that they come out painlessly as opposed to stitches.

The clips are due to be taken out on the 13th, and today I arranged with our GP practice nurse for an appointment. Following on from that I'll be sent an out-patients appointment to see Mr Skinner in approx 3 weeks for a check up, and I have the appointment with Dr Seddon at UCLH on the 19th.

Home 24 hours after the Operation !!

I was No 2 on the operating list, and expecting to go to theater around 10.30. However this wasn't to be as the first operation took over 4 hours. I guess the team then had lunch and I was taken down around 1.30.

When I met the anaesthetist he said I had two options. Option 1 was a normal full anaesthetic, and option 2 was an injection in my back which would numb everything below my waist. I asked if I would then be awake for the operation. He said that I could also be sedated so that I unaware of what was going on. I then asked that if I was left fully awake would it be possible for the surgeon to show me the tumour after it was removed. I was interested to see what had been causing me this grief over the past year. His answer was 'YES' which surprised me. Apparently they do occasionally get these requests, so I opted for this route. This might sound odd to most of you, but I'm not squeamish and would it would be the only chance for me see what a cancer tumour looked like.

Unfortunately it wasn't to be. After three attempts to position the needle correctly in my spine he had to give up, as each time the needle tip encountered bone before reaching the correct position. So it had to be the full anaesthetic, and within a very short time I was under, and my next recollection was waking up in sever pain in the recovery room. The pain in my stump was so bad I was crying and begging for something to be done. The recovery team are pretty good and the pain was under control within I guess 30 mins, but it was really long 30 mins.

My next recollection was waking up for a few moment in the ward, I asked for my watch to find it was 5.00.  I next woke for a few moments at 10.00 late evening, and then 7.00 in the morning after a good nights sleep. Had a good breakfast, and then was body washed in the bed as I had 2 drain lines and a morphine line draped around me, so pretty difficult for me to wash myself. After that I felt like a new man, ready to face the day. My aim was to get home that day, and to do that you have to meet a few requirements.

Firstly the morphine and two drain lines needed to be removed, and they were planned to come out about midday. Secondly you have to be signed off by the physiotherapist dept to ensure your going to safe and will not injure yourself when you get home. Thirdly the pharmacy need to get your pills and potions ready and sent up to the ward, and fourthly and most importantly the surgical team need to be happy and sign you off.

Knowing that I would achieve all 4 requirements by lunch time I phoned Jane to arrange for a pick up around 2.30 which I knew would give small a margin if any problems popped up. Luckily all went well and I was ready with bag packed when Jane arrived about 2.15. So now I'm home and resting for a few days in order to give my leg time to heal. Interestingly the surgeon opened my leg up by cutting along the old scar line, not sure why, but I'll certainly ask him when I next see him.

So next it's a consultation with the Oncology consultant at University College London on the 19th November. At this meeting I will find out if they consider a programme of radiotherapy to be beneficial or not. This will depend on both the histology and surgeons reports.

Updates will follow !!

Admission Day

What have I got in common with the Virgin Mary ??

NO ROOM AT THE INN (ward)

That's what !!

When we arrived this afternoon we went to the designated ward only to be told that there wasn't a bed available, so I had to wait around in the day room for a couple of hours before being shipped to another ward. However I have to say that this ward, The Colman Unit, is very nice and I have settled in nicely.

The inmates are the usual mix, there is the Asian guy opposite me complete with all his immediate and distant family including two very young boys who run around screaming and generally causing havoc. They have also taken over the day room where the TV is. However there are two programmes that I want to see later so I'll be going in there to chuck them out. Well it is for the patients and not visitors !!

Also opposite me there is a guy having knee joints replaced, and it turns out he's done time in prison. Can't think what for, but perhaps he was knee capped in the past !!!  Well you never know.  Apparently he was "fitted up" of course he was !! I didn't argue with him.

See what your all missing by not being in hospital.

I've had a blood test and one of the surgical team has marked up my right leg with a great big arrow pointing to the tumour area. I'm No 2 on tomorrow's operating list so I should go to theater around 10.30, and hopefully back on the ward by midday, that's if all goes to plan. If I come round, and I'm able I will do another post tomorrow. So now it's nil by mouth from midnight, and no liquids from 03.00

News Update

As promised the hospital phoned today. The first call was from the pre-admissions nurse who said that as I would be coming in soon for an operation she needed to go throu a list of questions to ensure that I was fit and healthy for the operation. She had no information regarding my admission date, but gave me the telephone No of Mr Skinners operation scheduler and said I should phone her after 3.00 if I hadn't heard anything.

Soon after that call the phone rang again with the news that I would be going in on Tuesday 30th. Brilliant !!

A little later I received another call to say that I had an appointment booked for 12.15 at The new Macmillan Cancer Center at UCLH to see Dr Seddon and discuss the possibility of radiotherapy after the operation.

All in all a good day, and as a very good mate of mine, Mr Abbott said, "now there's a light at the end of the tunnel" to which my reply was "its been a bloody long tunnel"

The Saga rolls on

Today I had an appointment with Mr Skinner in London to discuss the outcome of last weeks biopsy on the lump in my right leg (stump)  Two weeks ago when I was at the same clinic Mr Skinner had injured his back and was unavailable. Today however he was there, and just about on time at 2.00pm I was called in to see him.

The result of the biopsy showed that the lump was was indeed a Sarcoma tumour. We looked at the MRI scan of my pelvis which was taken last Monday and it was completely clear and showed no signs of any tumours. This was good to learn. So back to the tumour in my leg. Mr Skinner offered two choices that were open to him, the first was to surgically remove the tumour, and the second would be to amputate the remainder of the leg back to hip level. We both decided it would be best to just remove the tumour with surgery at this point in time. He did however think it would be good to speak to Dr Beatrice Seddon, the Consultant Oncologist at University College Hospital London, to see if radiotheraphy either before or after the operation would be beneficial.

I asked when the operation could take place and was pleasantly suprised to hear that next week was a possability. Mr Skinner promised that I would be contacted by phone either Tuesday or Wednesday with the outcome of his discussions with Dr Seddon. Because of the possibility of surgery next week I attended a Pre-addmission clinic before I left. At the Pre-addmission clinic they do various tests and take samples to ensure you are fit for surgery, ie blood pressure, heart rate, blood and urine samples, and swab samples from various parts of your body for MRSA.

So now just waiting for the phone call to see which route we go down.

Check up at Brompton

Today I had a routine check up at the Royal Brompton Hospital in London. The appointment was for 11.00am with Mr Jordan's clinic.  We arrived in good time and I was sent for a chest X-Ray prior to the appointment. I was seen by one of Mr Jordans registrars. We looked at the X-Ray and compared it with one taken prior to the lung surgery. Today's X-Ray was completely clear in contrast to the earlier one.

The Doctor was pleased with the result of the surgery and confirmed that several of the nodules which had been removed from both lungs were cancerous (Sarcoma) however both lungs now looked clear. After listening to my lungs with a stethoscope, she confirmed that both lungs were good. I was signed off and no further appointments at the Brompton were necessary.

Just after we got home this afternoon I received a phone call from Stanmore to say that the team had discussed the results of the the biopsy during their Friday meeting and that an appointment had been made to see Mr Skinner on Monday 15th at Bolsover Street in London. They never discuss anything over the phone, so I have to wait until Monday for the outcome.

Biopsy & MRI

Last week after my appointment in London I had a phone call from Stanmore to book the biopsy for Monday 8th at 11.15am. The following day I had another phone call to say that they wanted me to also have an MRI scan on my pelvis and booked it for Monday at 8.30am.

As we normally look after little Harry, our niece's youngest on Mondays, my good friend Doug volunteered to keep me company on the day. This meant an early start leaving home at 6.15am. The drive to Stanmore was uneventful and we arrived early at 8.15. I was straight in and the MRI was completed by 8.45.

With just over 2 hours to wait before the biopsy I decided to drive to the local Morrisons supermarket and treat myself and Doug to breakfast. Full english and a decent cup of coffee set us up nicely, and we got back to the hospital in good time to be at the X ray department for 11.00. The team doing the biopsy's were running about an hour late due to problems earlier in the day. However this was not a problem and we just sat in the waiting area people watching and occasionally nodding off to sleep.

When I was called in at about 12.10 the doctor gave me a local anaesthetic and then took 3 small samples from the lump to be sent off the the pathology laboratory for diagnosis. Hopefully the results will be available for Mr Skinners team to discuss at this Fridays team meeting. I should then have some news early next week.

Rest and Recuperation

Still taking it easy and resting. The back is improving every day, so another week or so should see me back to some normality.

Last Thursday 27th I went to Stanmore Hospital for the MRI on my stump. I hadn't said anything before, but when I was in The Royal Brompton Hospital having the final lung operation, I had noticed a couple of what felt like lumps in the stump. This is not what you want at this stage.

I mentioned this to the Brompton team and they arranged for a portable Ultrasound machine and operator to take a look for me. The resulting images were inconclusive and they phoned the Orthopaedic team at Stanmore. After I got home from the Royal Brompton I received a call from the Stanmore team to say that they had arranged for the MRI to take place on Thursday 27th. The Stanmore Orthopeadic team meet on Fridays to discuss their  patients, and on Friday afternoon the 28th I received a phone call saying that they would like to see me at Bolsover Street London for an appointment on Monday 1st October. Bolsover Street has been undergoing redevelopment and is now a really nice modern building.

Yesterday I went to Bolsver Street. Doug, a good friend came to keep me company, and Tom met us at Liverpool Street. We arrived Early and after a coffee in reception we went to the waiting area. I was seen a little after my appointment time by one of Mr Skinners team. It transpired that Mr Skinner had recently injured his back quite badly and will be out of commission for some time. This will present a problem as he is only one of two consultants who operate on Sarcoma's.

During the appointment we looked at the MRI scan. One of the lumps which is on the front didn't show up at all, and the doctor dismissed it as scar tissue on the bone. The other lump which is on the inside of my leg showed up, but the doctor was unsure of its nature. He said that had it been a tumour it would have possibly shown up as a different shade of grey on the screen. The only route would be to have an Ultra Sound Guided  Biopsy taken. He arranged for the biopsy to be taken this week either Wednesday or Friday at Stanmore.

I'll update with a posting when I know more.

Slowly Recovering

For the last few days I haven't really felt up to much, so I've been taking it easy. I'm back to sleeping 10/11 hours a night which I put down to the morphine that I'm taking. Things are slowly getting easier as the days go by.

Tomorrow I have an appointment with my GP nurse to have the stitches taken out that held the 2 drains in position, I'll also get the nurse to check the wound for me. The wound itself has dissolvable stitches which go after a couple of weeks. It's interesting that you come out of surgery with a 12" wound across your back, and there is no dressing. You are encouraged to start showering the day after surgery, this starts the stitches to commence dissolving.

This time round the opertion has taken a lot more out of me, and as I have a fair bit of bruising I'm assuming that my ribs were pulled around a lot more, and thats why it's taking longer to recover.

Thursday I have an MRI scan on my stump, at Stanmore hospital. The result of this will be discussed at Mr Skinner's usual Friday meeting, and I should get the results the following week.

SPOKE TO SOON !!

After my initial recovery which I reported in the last posting I was discharged from hospital on Thursday evening. My days in the Brompton were pretty good, I felt tired during the day but made up for that by sleeping between meals. My pain was under control, so I thought I was ready to go home. As before, Jane drove my car to Brentwood where Tom took over to drive through London and collect me. All went well and we arrived home about 10.00 in the evening. Straight to bed for me as I was pretty tired.

When I woke up yesterday morning at about 9.30 I was in acute pain across my chest every time I tried to move. I couldn't even move my head from side to side without being in pain. After some quick thinking I Got Jane to bring me up 20mls of Oramorph which is quick acting morphine that kicks in after about 10 mins.

Whilst I was laying there waiting for the Oramorph to work my mobile rang, fortunately I had it to hand, and was someone enquiring about the Mondeo which I had put on Autotrader. It was a guy from Norwich and he seemed genuinely interested, unlike some of the jokers that have called me recently. I gave him a genuine run down on the car and he arranged to come and look at it around 13.30.

By the time the call had finished the Oramorph had worked, and I was ready to get out of bed, albeit with a helping hand from Jane. After a quick wash and brush up I made it downstairs to the lounge where I spent the remainder of the day just resting. The guy from Norwich duly turned up with his wife, and went throu the paperwork and service history. Happy with that Jane then took them out to inspect the car and give them a test drive. On their return they were happy with the car and it was just left to agree a price. The car needed 4 new tyres so I was happy to accept the £400 less than my asking price. Everything agreed Jane took them to our local Barclays where they did a direct transfer to our account. That was really easy !!

So now I could spend the rest of the day relaxing, and I guess I'll be doing that for a few more days until the pain starts to subside. I'll let you know how things pan out.

Easier than last time !!

I can't believe that I'm sitting here on my bed typing a post for my blog just 24 hours after a fairly major lung operation. Although I didn't feel to good through the nite, I'll explain.

My journey the theater started at 3.30, and on arrival went through the usual procedure with the anaesthetist, which is basically having 2 cannula's put into  put into the back of your hand, and another up on your arm. Then it's lights out until you come round. The next thing I knew was waking up in the recovery room, and I asked the nurse the time, it was 10.00 in the evening. From then on through the night I was constantly waking up and not feeling to good. There was pain in my back where the surgeon had gone in and the ribs had been pulled apart in order to get the lung out. The night seemed to go on for ever, I was constantly wakeing, then sleeping, then waking .......

After what seemed an eternity the lights went on and I found out it was 6.30. In the recovery room there is one nurse to each patient. My nurse was a New Zealand guy about 30ish called Paul, and I have say he was absolutely brilliant. Bearing in mind I'm already restricted  with the amputation, and on top of that I had just come out of surgery, he washed me, changed my gown, and changed the bedding without any problem, a real professional

The recovery room was pretty empty, I think there was only 4 of us in there. I laid there watching what was going on until breakfast arrived. I was starting to feel better so I had a orange juice, a bowl of porridge, and a coffee. By this time it was around 9ish and I asked one of the nurses why it was so quiet. Simple, today there are no operations. Apparently all the surgeons are doing a course or something.

So I started chatting to four of the young nurses. The more I chatted, the better I felt. At 11.00 I was taken up to the High Dependency Unit, and there I gradually started to feel very tired to the point where I was drifting in and out of sleep, and time started to go slow just like the night before. As the day went on I slowly improved and by the time the evening meal came I felt reasonably good.

So I thought I'd do a posting !!!  It may be a lot of Gibbering Rubbish, I don't know, but I'll do more tomorrow.

Sunday at the Royal Brompton !!

Having made the decision to avoid driving through central London I decided to go around the M25 and down the A1 on to the A5 to Hyde Park Corner, and then on to the Fulham Road. Progress was good until we hit the Cricklewood and Kilburn area. We ground to a sluggish 5mph for the last 6-7 miles.

Anyway we got there around 2.30 so it didn't present any problem. Tom, our son had taken 2 athletes to run in the Portsmouth Victory 5 in the morning and had returned to meet up with us at the Brompton, which he duly did around 3.30. Both the male and female athletes had won, and both in course record times, so it was a good day for Tom and Run-Fast the Management Company.

We met up with Tom in the hospital foyer and went straight to the ward. As I had to start having various tests, Jane and Tom said their good byes and left to have a late lunch. Tom would then drive my car out of London to Brentwood, where Jane could then drive back to Tiptree and Tom could take the underground to the Barbican.

My assigned nurse, doing the tests and filling all the paperwork in, recognised me from my previous visit, which was nice. Her name is Stacy, and on my last visit she was on nights and delighted us all with her chirpy morning wake up call at around 5.45. She's like a little rottweiler, having said that she is a delight because she gets on with the job efficiently and always with a smile. Wouldn't it be nice if everyone was like that !!

She informed me that I was No 4 on the theater list, and with No's 1 & 2 being shortish operations I would probably be going down around lunch time. That's not to bad, at least I won't have go to long without food and drink.

Hopefully I'll do a posting on Wednesday when I'm back from cyber space !!

Just Waiting !!

The week has been a week of wishing time away waiting for Sunday to arrive, and my admission to hospital. I will be driving with Jane to the Royal Brompton Hospital on Sunday afternoon to arrive around 2.30 - 3.00. Our son Tom has to be in Portsmouth on Sunday morning as one of the Run-Fast athletes is competing in the Victory 5. He's hoping to be back, and at the Brompton for about 3.30 to drive Jane to Newbury Park, where he can hand over the car to Jane and he can get the underground back to the Barbican. I have to say that during the past year with all the various London hospital visits Tom has been brilliant in meeting up with us and driving us in and out of London, so a big thanks Tom.

Operation day is Monday, and as it's no food from Sunday midnight and no liquids after 6.00am Monday morning I'm hoping that I will be in the first wave on the operating list, otherwise it's a long day waiting and watching others eating and drinking.

From the previous operation on the left lung I know that Monday and Tuesday in the High Dependancy Unit wont be a good days, so hopefully I can update progress in next Wednesdays blog.

A Challenging Night at the Paralympics !!

WOW what a an evening !! probably one of the best evenings athletics I've ever seen.
Mainly all Finals, lots of World records broken. Golds for David Weir (800m T54 Wheelchair) and Jonnie Peacock (100m T44) & Hannah Cockroft (200m T34) to name but a few. These athletes are amazing and inspirational.

Getting to the stadium was interesting. Firstly a train from Kelvedon to Stratford which was the easy bit. At Stratford we had to walk following the signs for the Olympic Park. On exiting the station we were directed in to a separate lane for persons in wheelchairs or with walking disabilities, this certainly made things much easier. After about 200 meters we stopped in order to phone our son, Tom, who was due to arrive by underground about 5 mins after us. Due to good planning Tom and a work colleague, Justina, arrived just about on time and we all walked off together at my slow pace towards the Park. The crowds were incredible, thousands and thousands of people all homing in on the entrances.

I found the walk fairly daunting as there were people moving in all directions, crossing in front of me and darting around me, I had to be very precise about the path I chose. Jane, Tom, and Justina were very good in shielding me from the worst of it. I recon I walked about 3/4 mile to the security entrances by which time I was starting to get tired.

Security was interesting as it was exactly the same as the airport security, bags through the x-ray, and AMD for us. Of course with my leg I set the AMD off and had a body search of sorts from an Army guy. Not a bad search, but he wouldn't have got a job at Stanstead !!

The walk to the stadium was another few hundred meters before an enormous no of steps up to level 58 and our seats. By the time I had reached our seats I was pretty knackered and flopped down for a serious rest.

Three hours of sitting with my leg on was also tiring as it digs in in various places when I'm seated. We decided to leave after the last event, but before the final medal presentations in order to avoid getting mixed up with the crowds. The walk back to Stratford Station was difficult, my socket is now getting loose and the crowds were making things difficult by rushing and pushing around me. At about halfway we were offered a lift in a disability bus back to the station. This was gladly accepted and on arrival Tom and Justina saw us back to platform 10a just in time to catch the 10.44 back to Kelvedon.

All in all a brilliant evening, but also a difficult one from my perspective. I needed to push myself in a crowded arena to see how I coped. I was generally pleased with how I performed bearing in mind this was an extreme environment.

For anyone interested Tom has now posted all the 3 day reports on his 22hr, 131mile run in the "Ring O Fire" race around the Coastal path on Anglesey last weekend.
Click this link (tompayn.blogspot.com)



Not Much to Report

Fairly quiet week this week, just trying to do some of the ordinary things in life with my leg on. So today I vacuumed out the car after the weekends escapade to Anglesey, I then attempted to mow the back lawn which just about killed me. It's much harder doing even the simplest of jobs that we all take for granted, but I guess it will get easier as time goes on and I get more practised.

Another test coming up tomorrow as our son Tom has very kindly treated us to an evening at the Paralympics in the Athletics Stadium.

I will be wearing my leg for the rail journey to Stratford, walking around the Olympics Park, and for the evenings events on the track. I have to say that I'm really looking forward to seeing the Stadium having seen it grow over the past year when I was travelling to London for my radiotherapy treatment.

Tom and a work colleague will meet us on arrival at Stratford so I've got more than enough helping hands if required. This will be a real test of my confidence as the Park will be really busy with thousands of spectators milling around, and I will have to negotiate a whole host of obstacles, not to mention the many steps up to our seats on level 57 !!

I'll report on Friday on how I coped.

Busy Week Last Week

& Good News

The good news is that I have heard from the Royal Brompton Hospital and I'm going in for the operation on my right lung on Sunday 16th Sept with the operatiopn on Monday 17th. It will be good to get this over with and back on the road to recovery.

Last week was pretty busy, on Wednesday I had to make a visit to work at Stansted Airport to meet with the company doctor and also one of my managers. I was determined to go in with my leg on and dressed in long trousers, something I haven't worn since the amputation in May. So on Tuesday I did a dress rehearsal in my work trousers and shoes. It didn't go to well as the heal on my work shoes is slightly higher and this makes walking a little more difficult. I persevered and it slowly fell into place.

Wednesday came and I drove into work for the appointments. All went well with the doctor, and she was happy for me to return to work approx 6 weeks after my next lung operation. The meeting with my manager also went well and he is also happy for me to return when I'm fit.

It was interesting going in to work and bumping into familiar faces, I managed to walk OK without falling over and making an idiot of myself, so another milestone behind me.

Thursday I had promised my son Tom that I would drive him to Anglesey to the Ring Of Fire Ultra Marathon that he had entered. The purpose of me being there was to basically to meet up with him at the various control points and have drinks, food, clothing available if he needed them. One of Toms fellow workers, Shavaun, also came to help out. She was instrumental in getting Tom involved in this race so I think she felt she had to be there to give encouragement. As I'm somewhat incapacitated her help was invaluable in preparing drinks and getting things ready for Tom's arrival at each check point, not to mention having a companion in the car to keep me company.

The race is a 131 mile Ultra Marathon around the Anglesey Coastal path with a total vertical ascent of 13,695 feet over 3 days. Day one is 32 miles, day two 64 miles, and day three 35 miles. Day one, Friday started at 1.00pm, days 2 & 3 started really early at 6.00am with all of the the 100 runners sleeping in village halls at the end of each day. Without going into to much detail Tom won very convincingly completing the three stages in 21 hours 54 mins, and over 3 hours ahead of second place.

Tom at the finish with the race organisers.

Check Point stop on day2

This was Tom's first venture in to Ultra Marathon running and it looks like he might have found a new vocation !! I mentioned in previous postings that Tom was a little crazy in the things he attempts and perhaps this proves it. Who would want to run 131 miles, up and down 13,695 feet, through sea water up to your waist, mud 12" deep and through fields with bulls !!

Anyone interested in more details of the race can check out Toms Blog at tompayn.blogspot.com this should be updated fairly soon with a daily report and a few more pictures.

Having said all that we are extremley proud of him and his achievments.

Well done Tom.

End of the Week

Forgot to say earlier that on Tuesday my new wheelchair arrived. I had ordered it from a company near Manchester using the Wheelchair Voucher that I had been issued with. It's pretty neat, but more importantly it's nice and light. I don't actually need a wheelchair on a daily basis but I will use it when I go in for my next lung operation.

Although I have been practising doing a few flips etc.

After the dizzy spells I had on Wednesday I reduced the Gabapentin dosage down form 900mg to 600mg and it appears to be having effect, I'll report further next week.

I'm still walking approx a mile or so a day, and concentrating on posture etc, I'm going to need to find some more routes as boredom is slowly setting in

Not much to report

Today was Physio day at Stanmore. I was determined to walk in to see Jennifer without a walking stick, however I had a slight problem. We waited outside the gym and when Jennifer called us in I got up out of the chair and had a dizzy moment. I had the same dizzy moment getting out of bed this morning. So very strange.

Jennifer took my blood pressure which was a little high but I put that down to the effort of putting my leg on and walking through the hospital to the physio gym. I had a good session and Jeniffer was pleased with the progress I had made. Although I did get a small ticking off for not using a walking stick, apparently I still need to use one for a little while longer.

This evening I did a little research on the Gabapentin Tablets that I take for the phantom limb pain, and it would appear that two of the side effects are dizzyness and a slight ringing in the ears. I'm normally OK with my 3x daily dosage, but yesterday I took the afternoon dose really late and very close to the evening dose. So I think I temporarily overloaded the system which caused today's dizzyness. I also have a slight ringing in my ears most days, but not enough to cause concern. Hopefully I will have returned to normal by tomorrow, I'll let you know.

Same Leg - Same Mile in reverse - 45mins

Just to make sure that boredom doesn't set in I did the same Mile route around the block this evening, but in reverse. So what's different I hear you say. You able bodied people just walk without thinking about it, whereas I have to look ahead all the time to see what the pavement is doing.

All pavements generally slope slightly towards the road, this is to make sure that rain water drains into the road. Also there are drop kerbs so people can drive their cars off the road. With a prosthesis it is easier to walk with the false leg nearest the road, ie on the lower side of the pavement. Drop kerbs have a slope down and a slope up on the pavement and both of these give different problems to a prosthesis wearer.

Walking the same route in reverse presents different problems.

That's the science bit, and you thought it was easy !!

Anyway 45mins was 10% time improvement, I'll settle for that.

This is how fast I can now walk !! Haven't quite perected the grin yet !!

I need to say a big thank you to Dave at the Limb fitting Center because the mods to my socket have made it extremely comfortable, and this is the reason why I am able to do these long walks.

It's looking like my 2nd lung operation will be early Sept, should be confirmed this week.

Be nice to get it all over with, and back to normality.

1 leg - 1 mile - 50 minutes - No Falls

Another Milestone completed. This morning I went out for my usual walkabout, when I got to the top of my road I thought how boring to walk up and down the same bit of road. So from my running days I recalled  that a complete circular route around the block was 1 mile, so why not go for it !!

The block is rectangular "ish", with 3 long sides and 1 short side. Our close is halfway along one of the long sides. So off I strode noting the starting time at 10.10 and completing the first half long side with ease. Turning on to the next long side was fairly daunting as it looked a long way down to the next corner. Not to be put of I pushed on, stopping occasionally to compose myself. About 50 meters from the corner is my local gym so getting there is going to be no problem in the future. At the corner there is a War Memorial to the Tiptree lives lost in the two wars.

and as you can see there is a nice low wall for one legged blokes like me to rest upon.

At this point I had covered approx 1/2 mile, so I was pretty pleased. After a short rest I carried on, by which time the sun was blistering down and I was pleased to walk partially in the shade of some of the trees dotted along the way. Halfway down this leg of the route the local shops start to appear, Tesco's on the opposite side of the road and the smaller local shops on the side I was walking. This long side went well and fairly quickly (relatively)

I then turned on to the short leg of less than 100 meters, followed by 1/2 of the first long leg. This half leg is pretty boring, ie nothing of note just houses on both sides. however this is where I fell last Thursday so extra vigilance on the stretch. All went well, and after a few hundred meters I turned into our close, and home; albeit very hot and with a very damp tee shirt, but certainly elated !!

I checked my watch, 11.00, so a 50 min Mile. Not bad for a first attempt with no falls.

Another Milestone in my life !!

What next I wonder ??

Getting back in the Saddle !!

After my little tumble on Thursday I had a day of rest on Friday as my leg was a little sore, and my body ached a tad. I think I twisted myself when I fell, however, I guess it's to expected at my age !! I ain't getting any younger.

The weather on Friday was blistering, wall to wall sunshine, and it was really nice to see an old mate of mine who took time out to drive over to see us. Neil and I go back a few years to when we both had houses in Florida. I had bought our first house on Doral Woods, a nice development just south of the 192 near Kissimmee. Neil then bought a house in the same road, Elbert Way. A couple of years later I was offered the chance to buy one of the last remaining plots in the next road Evans Drive. I bought the land and contracted a local builder to build a lovely 4 bed, 3 bath house with outside pool. About six months later Neil grabbed the last remaining plot which was next to mine, and he built a superb 4 bed house. These houses were rental homes which we rented out mainly to UK families visiting the Disney area.

In 2004 Florida had the worst Hurricane season for a long time. The first to strike was Hurricane Charley in early August. It devastated central Florida and ripped through Doral Woods Smashing up both our properties. Neil and I  flew out the following day and spent 3 weeks patching up our houses, making them watertight and sorting out insurance claims. It was without doubt the hardest 3 weeks of our lives, working 18 hour days in blistering heat and no air conditioning in our homes. During this time we forged a good relationship, and we have been good friends ever since.

I digress, Neil is a real car enthusiast and he drove over in his 1960 Corvette Convertible, so for all you petrolheads out there here it is

What a beautiful car, and we heard him coming from the next village !!

Saturday - Leg on this morning for an hours workout. Well I did about 15 mins then I thought that maybe I should go back home and try to do some of the normal things that we all take for granted.

I thought what about the lawn, it needs cutting and edging. Friends have kindly been doing this for me. So I opened up the garage, ran out the extension lead, connected the strimmer and started doing the edges and corners etc. It was relatively easy, I just need to concentrate on making sure my leg was locked before putting weight on it.

So the strimming was OK, what about mowing the lawn I thought. So I got the mower out checked it had enough petrol and I sat on one of the low walls and started the mower up. Off I went up and down, although I did find it hard turning both myself and the mower at each end. Also pushing the mower was harder than I had anticipated. I guess it was around 11.00 and the temperature was pretty hot which made it harder but I persivered until I had finished the whole lawn. My Tee Shirt was absolutly soaking wet, but I had achieved another goal. Later in the day not surprisingly I was pretty knackered and had to have an afternoon siesta.

Progress in Small Steps

After reaching Milestone 1 the other day I had to take a step backwards. Basically I was getting to the stage where the socket was becoming painful and in need of modification. I had gone out yesterday morning for my usual walk and after about 10 mins I had to return home, the socket was really painful around the crutch. 

I phoned Dave the Technician at Stanmore to discus the problem and of course he knew exactly what was wrong. My leg has now shrunk a little, so that it is going down further in to the socket, hence the painful crutch. Fortunately Dave could fit me in with an appointment today at 2.00 to sort out the problem.

For me this was a first as I drove the new car to Stanmore with Jane as a passenger. I haven't driven to the hospital, or any ware else for that matter, for nearly 3 months so a really good outing for me.

When we arrived at the Limb centre Dave was quick to discuss the problem and to offer the solution of trimming back the socket in the offending areas. The socket also has a silicon liner which Dave folded over the outer material and heated in to position to give a larger softer edge. I tried the leg on and was pleased with the changes, it felt much better and without any painful areas.

We arrived back home at around 4.30 so I decided to go out for a hour or so to check out the leg for comfort. It was good, and I felt comfortable, although it will take a lot more practise to become perfect. I was approaching the final walk back when I must have lost concentration and suddenly found myself flying to the ground grazing my elbow in the process. I had tried to put my weight on the leg before it had locked out. The knee, of course, had folded under me and CRASH !!

Still if you don't make mistakes you don't learn.

Unfortunately these mistakes are generally painful !! but hey ho.

Walking without Sticks !!

A friend of a friend phoned me today, his nick name affectionately is "Parrot Bob" Given to him by our good friend Andy T, and not because he's only got one leg like myself but because he keeps a parrot. Bob lost leg above the knee when he was about 17, so has a wealth of knowledge. He very kindly phoned today to see how I was getting on.

I told him of yesterdays problem with the change of shoe to trainers, and he very quickly spotted the problem. My initial shoes are fairly flat healed, and the trainers I changed to have a good 20mm cushioned heal for runnning. This changes the aspect of the foot from being flat to slightly sloping. Little changes like this make a huge difference to walking. I wasn't aware of this so I have now changed back to the flatter shoes.

So a big thank you to Bob, and I'll certainly be on the phone next time I have a problem.

So here's to days video of my first attempts to walk without the aid of walking sticks.

It's a big milestone and I have achieved it quicker than I thought I would.

So now I need to work on perfecting it.

Milestone No 1

Today I decided to try a different pair of shoes on the leg. Up until now I've been wearing the same pair. So I thought it was time for a change so I popped on a pair of my old trainers and ventured out. Absolute disaster !!  I couldn't walk more than a few steps before the leg decided not to function. I spent nearly an hour walking up and down the access road to our close, gradually improving but still nowhere as good as I had been previously. On my last attempt friends drove into the close to see us so I abandoned the session.

This afternoon I ventured out again, and low and behold I found that I was walking fine with just the occasional blip. So good in fact, that within half an hour I had started to walk without the aid of the walking stick. I did about 4 or 5 walks up and down our road completely unaided. I guess that I had found the confidence and balance required to stop relying on the stick.

Milestone No 1 Completed !!

So tomorrow it's just me and my leg, let's hope it goes well. I'll hopefully get a video and post it for all to see. It may not be the prettiest of walks, but it is me walking unaided. Milestone No 2 is to walk unaided to my local Gym which is about 1/2 mile away. There's a coffee waiting for there for me, so that's the incentive.

Brilliant Day !!

This morning was the first day of the rest of my life

And I started it off with my first solo walk around my close, and I also ventured a little further into the next road. I was stopped by a friend passing in her car who was really surprised to see me doing so well on my first day. Also when I got back to my close I was met by one of my neighbours taking his dog for a walk, I stopped and we had a chat for 5 mins, both of us commenting on how much we were enjoying the Olympics. As I was out for about an hour the two stops I had helped me to rest.

So that was a first, let loose by myself with my new leg, and no falls !!

Home after that for a quick shower, and our long time friend Dallas picked us up to collect our new car. Thanks for that Dallas - much appreciated

This is it on our drive.
The journey home was interesting as I had to use my left leg, and I haven't driven an automatic for a while. However it didn't take long to acclimatise and within 10 mins I felt comfortable. We took the longer scenic route home rather than going through the centre of Colchester which was better with less traffic.

So now I'm mobile and it really is a very good feeling.

If there's one thing I've learnt over the past year it's
"Don't take anything for granted in life, everything is special"

Leg !!

He's finally home, my new right leg that is. Not sure what to call him at the moment, but I'm sure somebody out there (probably Muddy) will come up with a suitable name.

Today Jeniffer the physio gave me an hour of intensive training with the leg to ensure I was competent and safe to take it home. Although it was over 2 weeks since I had used it, due to the operation, I felt fine and got on well. Although I did have one fall, but that's to be expected and I'm sure it wont be the last.

The socket is the first one made and I have to wear the support belt which you can see attached to it. This belt goes around my waist and helps to support the leg. As my leg shrinks a new smaller socket will be made, probably in about 6-8 weeks, and finally in about 6 months or so I'm hoping for a vacuum socket attachment which I will elaborate on in a later posting.

Today my new car was having the modifications done to install an additional left foot accelerator, and at about 5.00pm I had a call to say it was complete and the car was back at the garage. So just the final valeting in the morning to make it ready for us to collect. We have friends taking us to the garage in the afternoon around 2.00pm, so tomorrow I'll tell you what's it's like to drive with my left leg !!  Should be interesting.

Wheelchair Sorted !!

It took just 1/2 an hour to sort out the wheelchair mess. Why did it have to get this far before a suitable solution was available ? 

Very simply the wheelchair service which is part of the NHS has two options. Option1 to supply a wheelchair via an accredited supplier which is what initially happened to me. However without detailed consultation with the wheelchair user and their carer, this option means that the user probably ends up with the wrong wheelchair.

Option 2 is to supply a voucher, which means user can then select his or her own wheelchair from any suitable supplier, and if necessary top up the value to get the required wheelchair. In my case this option was never offered and I'm not happy about that.

Having said that today I was assessed, and I stuck out for the voucher scheme. I ended up with a voucher worth £320, which is way in excess of my requirements, but I'm happy with that.

I will be writing the the Chief Executive of the Mid Essex Primary Care Trust to ask some questions as to why the service treated me as it did. Hopefully I can change the way the Wheelchair serves its customers, there are clearly things that could be improved.

I thought you would like to see what I'll be like as soon as I come off all the pills and can have a drink or two

Can't Wait - Mines a Pinot Grigio !!

Busy Week Ahead !!

I'm looking forward to this week. It's just under 2 weeks since my lung operation and I'm healing well, the wound is still a little sore and my chest is slightly tender, but every day there is an improvement, and I'm feeling good.

Monday

Monday sees us making a visit to the wheelchair service, where I have been summoned to attend an assessment to see if I qualify for a voucher to purchase a wheelchair. I recon that with only one leg I should, but you never know we'll have to wait and see. Check the blog for an update on Monday !!

Tuesday

Tuesday I need to visit the Garage where my new car is coming from as I need to show them my Blue Badge. I probably didn't mention it but Hyundai run a scheme called "Affinity" whereby certain sections of the public can purchase a new car at a considerable discount. This includes police, NHS staff, etc and also includes holders of Blue Badges. So I qualify, but I need to get to the garage to give them the details.

Wednesday

Big day for me, I collect my leg from Stanmore. I'm booked in for an hours physio at 1.30 with Jennifer. Due to the operation I haven't been on my leg for a while so I'll need some further practice with instruction from Jennifer before leaving for home. Once at home I can practice morning and afternoon at leisure.

Thursday

Another big day !!  I collect my new car. I have bought a Hyundai i40 tourer automatic.

It was difficult to breakaway from Ford as I've had several over the years and been very pleased with them. However I couldn't find a suitable automatic so I took the plunge and went Korean. I checked it out on line and car for car, and value for money it came out well. So lets hope it proves to be as good as it appears.

It's got just about everything you want in a car, full leather, sunroof, touch screen navigation, key less entry, electronic handbrake, reversing camera etc.

Friday

Well, I bet you can guess what I'll be doing Friday. Going out for my first driving day since I had the amputation 2 months ago. Whilst I've had automatic cars before It's going to be a learning curve driving with my left leg, so I'll give you an update on what is was like next weekend.

Said it was a busy week !! but it's also a milestone week !!