The End....

This will be the last blog post on David Payn's "Journey with Sarcoma".

On the 6th September 2013 at around 8.30p.m. he finally passed away and no longer has to suffer.

David's funeral was held on 26th September 2013 where many of his friends, family and work colleagues came to celebrate his life.

As with everything in his life he even managed to plan his own funeral in fine detail! He wrote two speeches that two of his closest friends read at the funeral. I (his son Tom) thought I would post both up here as a fitting way to end his blog. So here we go:

WOW !!   How did I get to this point in my life.

I recently listened to a brilliant audio book by Bill Bryson called “A Short History of Nearly Everything” And I would like to take a few moments to pass on a few of his words on the creation of life. I hope you find it interesting, I did.

“Welcome. and congratulations. I am delighted that you could make it. Getting here wasn’t easy. In fact it was a little tougher than you realise.

To begin with, for you to be here now, trillions of drifting atoms had somehow to assemble in an intricate and curiously obliging manner to create you. It’s an arrangement so specialised and particular that it has never been tried before, and will only exist this once.

For the next many years these tiny particles will uncomplainingly engage in all the billions of deft, co-operative efforts necessary to keep you intact, and to let you experience the supremely agreeable but generally under appreciated state known as life.

Why atoms take this trouble is a bit of a puzzle. Being you is not a gratifying experience at atomic level. For all their devoted attention, you’re atoms don’t actually care about you – indeed they don’t even know your there. They don’t even know they are there. They are mindless particles after all, and not even themselves alive. Yet somehow for the period of your existence they will answer to a single rigid impulse; to keep you you.

The bad news is that atoms are fickle and their time of devotion is fleeting. Fleeting indeed. Even a long human life adds up to only about 650,000 hours. And when that modest milestone flashes in to view, for reasons unknown, your atoms will close you down, then silently disassemble and go off to be other things. And that’s it for you"

So that’s how I, at the atomic level, got to this point, and why you are all here now. The bit in the middle was my life. So the atoms that made me are now disassembling and going off to be other things, and I quite like the thought of that !!

As you will hear later I had an incredible life, with no regrets, which was unfortunately shortened a little by Cancer

So - What’s it like to hear that word - Cancer

I thought it would be good to give you all a picture of what it’s like to be told you have cancer.

I know that some of you here have been through this dreadful situation, and you, and only you, will be able to fully empathise with my thoughts that follow. When you were going through the diagnosis and treatment I was unaware of what you were going though, but now I understand and realise how strong you must have been. We are only ones here to really know what it’s like.

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I remember the day, it was the 13^th July 2011. It became firmly etched in my memory. I had noticed a small lump on my right calf, and thinking nothing of it I just carried on as normal for a week or so until one day I thought, it’s not going away so maybe, I should get it looked at.

My doctor examined at it and suggested I get a physio to look at it. My local physio gave me one treatment and on the second visit suggested that I get an UltraSound done as he had no idea what is was. It certainly wasn’t a tight muscle.

I booked a private UltraSound at the Oaks Hospital in Colchester. I think the doctor doing the scan knew what it was as he phoned my GP and made me an appointment for the following morning.

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That was the fateful day, and a day I’ll never forget.

It was the day when my GP said to me

“YOU HAVE A TUMOUR”

I guess there’s no easy way to deliver that kind of news to a patient.

Unless you’ve been on the receiving end, and I hope that you never are.

It’s impossible to appreciate what those few words do to you.

It literally is a “Life changer”

For me it was as if someone has run me into a brick wall.

There was no pain. I just become numb from head to foot. My brain switched in to Cancer mode. I walked around doing my normal daily things, going to work etc, but in a complete daze.

It takes a long time to really sink in, and then it becomes all consuming.

Your life, and everything you do revolves around your illness,

it’s in your thoughts every second of every day.

It never leaves you.

Even later on when you think you’re in remission after treatment, it’s still there at the back of your mind because you know it can reoccur at any time.

It affects your family, and friends, and everybody around you, but you’re blinkered vision makes you totally unaware of that.

As you know my particular cancer was called a Sarcoma, a fairly rare cancer that affects soft tissues such as muscles, and also bones. Mainly affecting the limbs, arms, legs etc.

My GP referred me to the Royal National Orthopaedic Hospital, to a surgeon specialising in Sarcomas. From diagnosis I was seen within 3 days.

From day one the treatment I received from the London hospitals was exemplary and I can’t thank the NHS and the staff enough for what they did for me. I never had to wait long for any treatment, and my appointments and operations were arranged quickly and efficiently. All the staff I encountered were fantastic and very professional, they certainly made my journey with this cancer more bearable. When you have a serious, or life threatening illness the NHS is there for you, and I have nothing but praise for the system.

Well maybe one moan, the quality of the food could be improved !! but at least I managed to escape pretty quickly after each operation so at least I wouldn’t die of malnutrition !!  I very quickly worked out that the Asian food was bought in from outside, and that it was just like the take away curries we all love. So Asian food it was for me, and that solved the food problem !!

One in three people will be affected by cancer at some point during their lives and it’s only when you become involved with cancer and it’s treatment that you get a real  appreciation of how many people it affects. During the last two years I have seen a huge number and variety of people affected by cancer. Sadly it’s the children and young people affected by cancer that upset you the most. These are the ones that really make you ask the question - Why ??  -  because it really doesn’t seem fair.

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My journey with Sarcoma has been OK,  Over the 2 years from day one I haven’t really suffered physically from the illness, and I guess that’s why they call it the silent killer.

When I was first diagnosed, I googled “Sarcoma” to find out more information. The information I found on line wasn’t good so I think I knew that the eventual long term outcome wouldn’t be good. However, after the initial Radiotherapy and surgical removal of the tumour on my calf  I was hopeful that they may have caught it early enough.  That wasn’t to be, as a few months later it returned higher up behind my knee and this lead to my amputation.

Having a leg amputated was not easy to accept, however I think I managed to cover up the mental trauma that I was going though, and I put on a brave face for all around me.  Suddenly your life changes irrevocably. Suddenly your unable to do all the simple things that we all take for granted.  That was the hardest thing to accept. When you have been physically fit and active all your life it’s very hard knowing that your life will never be the same.  Waking up in the morning, looking down to see only one leg, was tough, bloody tough !! and every day just to get out of bed I required crutches. I found that really tough.

For me it was like being given a life sentence, and being put in solitary confinement. Knowing that this would be the rest of my life. That was very difficult to accept.

Then followed 2 operations when it had spread to my lungs, and yet another tumour in my leg which was removed, and followed by another 7 weeks of radiotherapy.

Then another tumour in my good leg, and the news that it had now re-appeared in both lungs was just about as bad as it could get. So apart from chemotherapy, which would make little difference to the end result, the prognosis was now months. A short programme of radiotherapy to stop the leg tumour growing and I had now accepted and resigned myself to the inevitable.

One of the strange side effects you get with amputation is phantom limb. Your brain and nerve system still register the leg which has been amputated. The severity varies from person to person. In my case I could feel the whole leg, even down to being able to wiggle my toes. I could also slightly bend my ankle but the knee remained locked. My phantom limb felt warm and just like having bad pins and needles. Not a pleasant sensation, but the medication kept it under reasonable control.

The prognosis was not quit as bad as it sounds.  It did at least mean that I had some control over my final months, and that I could plan and organise my finances to do the best for my family. For me this was paramount, and I was really pleased to be able to get my house in order and tie up all those loose ends, and leave Jane and Tom well catered for financially

And it wasn’t all doom and gloom as you’ll see later. I had a really good life, nothing to complain about. In fact I had a brilliant life, probably better than most.

We are extremely fortunate to have a wonderful and diverse group of friends, so I know that there will be a good support network in place to help Jane and Tom through the next few months. It's at times like this that you realise how important friends and family are.

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A précis of My  Life  - Where did all that time go ??

Knowing that you only have a limited time left, was, for me,  “interesting,”  I guess that a lot of people would  find that a pretty odd thing to say,  But by “Interesting”, that I mean it allowed me to look back, reflect on my life, and to put in order everything that I was leaving behind.  As most of you know I liked things to be fairly tidy and in some sort of order. Stripes in my lawn, never late for appointments, flights etc, and in this case finalising and tidying all my affairs before shuffling off.

Going right back to the start I reckon that all of us “Baby Boomers” who were born just after the Second World War, were probably born at the very best time in recent history.  Our parents had suffered the ravages of World War 2. The men were away for years fighting, and the women were left at home, doing their bit for the war effort, and putting up with severe hardship, and the constant bombing. If the men weren’t killed in the fighting they came home to a world that, we today, would find it hard to imagine. The words “Hard Times” do not even begin to describe what it must have been like. But being “British” everyone just got on with it, knuckled down, and made the most of what was available. My parents, and Janes parents, never really spoke about those years in great detail, or the tough years after the war, but we knew it hadn’t been easy for them. Their generation gave so much to make the world a better place for us to live in, and I for one was extremely grateful to them.  Unfortunately I never told them, thinking back I really wish I had.

I was born, and spent my early childhood years, in South London. I’ve nothing but good memories of those times. Everybody was in the same situation with the country trying to build back up after the war. I vaguely remember “Rationing” and having to queue up with my mum with our ration book for various foodstuffs. I didn’t see a banana or an orange until I was at least 4. My Dad had a job working in the Post Office, and in those days it didn’t pay a huge wage, but it was a secure job and it paid the bills, leaving a little over for the odd holiday by the seaside, complete with hand knitted woolly swimming trunks that ended up hanging down around your knees when they got wet !!    Happy Days.

Every Friday before dinner my dad sat at the table and went through the weekly ritual of opening his wage packet, which in those days was paid in cash, and putting various amounts of money into boxes and tins to cover the following weeks expenditure. Food, Rent, clothing, Insurance, Holiday etc. By doing that we never over spent or got into debt.

Those early years prior to starting at secondary school were good, we had no luxuries, but we knew nothing else. At weekends we went out to play after breakfast and returned for dinner when it got dark. We climbed, and fell out of trees, built dens, and got up to all sorts of mischief. I can remember walking to school in thick smog, having to go hand over hand along the fences when the visibility was close to zero. Schools never shut back in those days. I can’t ever recall my school closing for anything. We all took Cod Liver Oil tablets, drank a weird concentrated orange juice supplied by the government, and had a warm 1/3 pint of milk every day at school. It made us the people we are today.

Secondary school for me was a revelation. My earlier years of stripping down  and rebuilding bicycles, making soapbox carts and wooden scooters came good. I had Metalwork, Woodwork, and Technical Drawing Lessons.  I loved it, doing lessons in things you really enjoyed and that you were good at was brilliant.  I also enjoyed Maths and the Sciences, but struggled with anything that had the word “English” in the title. (I think you can tell that from this, and the previous drivel that I’ve forced upon you)

One enduring memory of those Secondary School years was our Monday morning Technical Drawing lesson during which we spent most of the time discussing the previous Saturday evenings episode of “Doctor Who” This was carried out with the approval of, and included, our teacher Robin Smith who was in later years to become a good friend and mentor. I owe him a lot for shaping me in my early years.

During the latter years at school I started to see the advancement of technology, and by the time I started work as a draughtsman in the Iron & Steel Industry all sorts of interesting things were appearing.

Suddenly the first electronic calculator came on the market. Designed and built by an inventor called Clive Sinclair, who also went on to design the worlds first electric one man car, the C5. The Sinclair “Cambridge” calculator was available fully assembled or in kit form. Assembled, the cost was around £40 which back in the early 70’s was a huge amount of money. I waited a couple of years before buying my first calculator, and then spent several years manually checking all the answers because my brain wouldn’t accept that the answers were right. I’m sure I wasn’t the only silly sod doing that !!

In the 60’s we were privileged to witness a monumental change in popular music. Nothing before, or since, has had the same effect on a generation. The Beatles, Rolling Stones, The Hollies, Jerry and the pacemakers, Beach Boys, Del Shannon, Buddy Holly, Eddie Cochran, The Everly Brothers, and Neil Sedaka to name just a few. All enduring names, and still listened to today. They set the benchmark for the rest to follow.  Can’t think that today’s artists will be around and remembered in 50 years time. It was without doubt the best time to be growing up. There’s no question about that !!

Roundabout this time Computers were starting to come into use in commerce and Industry, but they weren’t as we know them today. They were huge machines and filled rooms the size houses. The company I worked for in Richmond used to rent the “Egg Marketing Board” computer based in Regents Street, London. We paid for the computer by the hour and I used to travel up to town once or twice a week usually in the evening to run various programmes. Programming was done using “punch cards” which looked not disimilar to Airline boarding cards but with lots of small rectangular holes in them. Or alternatively a reel of 1” wide paper tape, again with a series of small punched holes in it. 

 I consider myself incredibly fortunate to have been in at the forefront of the computer age.

In my 20’s working for this Company I was lucky to be able to fly around the UK and Europe on business. Based in Richmond Surrey meant we always flew from Heathrow, which in those days was a much smaller airport. I could leave work at Richmond and be parking at Heathrow in ½ hour, then straight in to the terminal. In those early days I flew on Vicount’s, Vanguard’s, and Britannia’s, all 4 engine propeller planes. These planes were pretty crude by today’s standards, and I have to say that some of the flights were pretty frightening, especially the ones taking off or landing in snowy conditions, which happened a lot in places like Switzerland, Sweden and Finland etc.  In later years I saw the introduction of pure Jet planes as we know them today, specifically the BAC 111 and the Trident.  Commercial flights in the trident were used to test the automatic landing system which was being developed back in those days. Indeed the first ever “blind landing” of any aircraft was the Trident.  I had many a white knuckle landing while they changed and perfected the software.

It was a good time to be working, jobs were plentiful, you could leave one job on Friday and start another one Monday morning. I moved around doing various jobs in engineering, mainly in design, and gaining loads of experience.

I met Jane around 1970 and we married on the 1^st January 1972. We both had good jobs and we were able to travel the world visiting some amazing places. Seven years later we adopted our son Tom and our family was complete. I can’t be sure of exact dates but I believe around 1975 I went into partnership with Dick, my brother-in-law, and we started Tiptree Precision Engineering. Both of us ran this business until I left to semi retire in 2006. Looking back over those 30 years the business had it’s ups and downs of course, but it gave us a reasonably good living.

In my case it gave me the ability to take time off work to support our son Tom who was an up and coming young athlete back in those days. I was able to leave work early whenever needed in order to drive him to races all over the country. I don’t know how many thousands of miles we covered in those early years, but we had some good times, met some nice people, and saw a lot of Travel Lodges !!  Being able to support Tom at that time was absolutely brilliant for me, and I know it helped to shape him into the person he is today.

We were also very fortunate to be able to buy property in Florida, indeed we even bought a plot of land and built a house to our own design. This for me was a brilliant, I loved a project. We ran the houses as rental properties for UK families wanting to visit Disney. More by luck than judgment we managed to sell these properties just before the big housing crash in America in 2006

After retiring in 2006 I was lucky to get a part time job working at Stansted Airport were I had a 5 brilliant years working in security. I met and worked some lovely people, and had the privilege of being able to design the Automatic tray handling system now in use in security. Dubai Airport have since ordered 116 of these machines for their upgraded terminals. I’m proud to leave this legacy behind.

I think what I’m trying to say through this jumble of ramblings is :

I had a fantastic life  !!!

No regrets, I’ve loved every minute of it, and everything that I have done.

If I had my life over again I wouldn’t change a thing.

I really can’t think of any minus’s so here are a few of the pluses :

I grew up when times were tough, but it gave us values, and shaped us.

We didn’t have political correctness or health and safety – we didn’t need it.

Trains were steam

We had typewriters and carbon paper

Credit was unheard of, you saved for the things you wanted

TV was black and white

Cars were a luxury

I built a boat

I built a car

I built a house

I skied and hiked, and in my youth did caving, climbing and pot holing

I witnessed huge changes in technology, that were hard to keep up with

I flew on the second 747 Jumbo into Heathrow

I flew on Concord.

I coached athletics

I ran 5 London marathons (best time 3hrs 52min)

I witnessed a Hurricane first hand

I had some fantastic holidays with my family

I enjoyed all of my working life

We made some incredible friends

And I met some fantastic people along the way

What an incredible journey !!

More importantly I have no regrets.

How many people can say that !!

Am I leaving a world that's better now than when I came into it 66    years ago ??  I'm really not sure. Certainly it was a tougher world 66     years ago. Many things have changed for the better, that goes without        saying. But on a global scale, I'm not sure. You will all have your own    views on that !!

I’m taking some wonderful memories with me.

                                      ---- Remember ----

Be happy, never waste time, enjoy what you have, don’t be greedy,

and don’t worry about things you can’t change.

And you will have a good life as I did.

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A huge thankyou for all the messages of support that have been sent, David truly was a well loved and respected man. A special thanks to Sean, Andy and Doug for being so amazing at the funeral.

If people would like to donate to a charity on behalf of David please donate to one of the following:

http://www.justgiving.com/robandmikedothemacmillanchallenge-2014

McMillan were a huge support to David and his family and the work they do is amazing. Two of his work colleagues are raising money for this worthy charity on behalf of David and every penny you donate will go to Mcmillan.

http://www.farleigh.org/supporting-farleigh-hospice/make-a-donation/make-an-online-donation.cfm

David spent the last few weeks of his lifecared for in the farleigh hospice. Please visit the website for more information about the hospice. The nurses and other staff do a great job and without the support of donations it couldn't continue to run.

Thanks for reading.

The End....

2 Weeks after Radiotherapy

It's been just over 2 weeks since my last dose of radiotherapy and my leg has now reached the peak of soreness. Over the last 14 days it has gradually become more and more red and sore. It's a little like leaving your leg out all day in the hottest sun you can imagine, and getting a really bad sunburn . It has sore red patches and blisters, although I have to say it's not as bad as it looks.

Not a pretty sight !!

I spoke to the Consultant at the Prosthetics Unit at Stanmore Hospital to ask if I could transfer to the Prosthetics Department at Colchester Hospital. He said that this would be no problem as Colchester is a satellite unit and is under his care. This means that I can get my new socket measured and made at Colchester rather than Stanmore. Any medical problems would still be dealt with at Stanmore, but all mechanical settings etc will now be done at Colchester. This will reduce our travelling considerably.

I now have to wait approx another 2-3 weeks in order for my leg to get better and for the slight swelling to go down. Then I can get a new socket made for my leg and get back to some normality. I've been on crutches now since August last year and it will be really nice not to have to use them all the time.

Another update to follow when I get my leg sorted !!

Radiotherapy Finished

33 treatments finished last wednesday, and also the daily commute to London. I wont miss the commute but I will miss the staff at UCLH Radiotherapy Department. Over the 33 days I was treated by 14 different staff and they were all wonderful. There are 5 machines at UCLH and I was generally on No's 2 & 3 the only exceptions being breakdowns and routine maintenance. Each machine in manned by 3 to 4 staff with floating teams to cover tea breaks, lunches etc.

Before leaving last Wednesday I was seen by one of the Oncology Team doctors for a welfare check, and to to say that I would be bought in for a scan in March. Friday morning the appointment arrived and I have CT Scans to my chest, pelvis and abdomen on March 12 at 9.15. This is really early for me, and it means that I will have to be up early to join the commuters for my journey to London. My next meeting with the surgeon is due on February 25th for a routine check up

I now have to wait 4-5 weeks for my leg to rest from the radiotherapy and I can then get a new socket made for my prosthesis. At the moment my leg is pretty red, and a little sore from the treatment. However it's not to bad considering that I have had 30% more treatments than last time, and the skin on the top half of your legs is somewhat more sensitive than the lower leg.

All going Well !!

It's Wednesday 16th and I have just finished treatment No 23. After my 1.30 treatment I was seen by one of the Oncology team doctors for a welfare check and review. He was really happy with progress and will see me again on my last day Wednesday 30th for a final check.

Yesterday I found out that my treatment is being done in two phases. Stage one finishes on Friday after 25 sessions, and Stage 2 starts Monday for the remaining 8 sessions. During the first 25 sessions they have been treating an area of approx 20cm x 19cm, which is is most of my leg. The second phase starting Monday will focus on a smaller area of approx 13cm x 18cm, generally the area where the tumour was removed from.

Over Halfway !!

It's Wednesday 9th and I have now completed 18 treatments, so well over halfway, and I can't believe how quick it's going. Nothing really to report except that all appears to be going well so far. I'm expecting to have an appointment with Dr Seddon the clinical oncologist at UCLH fairly soon after I finish and also a CT scan to check on the results of the radiotherapy.

I have an appointment with Mr Skinner at The Royal National Orthopaedic Hospital at Stanmore arranged for the 25th February for a routine check on the operation.

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.