Thank You!
The end of the year 2009 is approaching. What an extraordinary time this year has been. It started badly with me in the acute neuro-surgery ward at Charing Cross Hospital, London. Then on a snowy day on the first of February my transfer to the Regional Rehabilitation Unit at Northwick Park Hospital was the start of three months of work to get me walking again. It was during this time that I learnt that the NHS had no effective treatment for my brain tumour but that there was a chance of finishing it off with Proton Therapy which, by the way, would require me to go to Massachusetts General Hospital, Boston and, also by the way, the NHS would not bear the cost.
There ensued the extraordinary campaign to raise the money to pay for my treatment. What an astonishing phenomenon that has been. So many kind, generous and determined people all combining to make my treatment at MGH possible. So on the 5th July we flew to Boston. The staff at the Proton Therapy Center at MGH were universally caring and determined to make the process of thirty daily treatments as stress free as possible. And so they did, together with the physical therapy team who continued the process of bending me straight.
Since our return home progress with recovery from the radiation treatment has been all too slow. I have regular appointments with my doctors back on this side of the pond and they are keeping a beady eye on me. The one uplifting thing has been the support and generosity of family, friends and of so many wonderful people that I may not have known before but now count on as very, very special friends. You have all been AMAZING!
Thank you for every single message and gesture of support and I only hope that my recovery will be sufficient reward.
Happy Christmas everybody and a Prosperous and Healthy New Year!
The Raffle
This is the scene in the Lobby of the GMTV Centre at Bankside, London last Wednesday 30 September when Andrew Castle very kindly agreed to make the draw for the Raffle. Also in the picture is Nona who organised the whole event down to the last detail. Thank you Andrew and Nona for your wonderful support, everybody who gathered there and indeed everyone who so generously bought tickets. The Raffle raised nearly eight thousand pounds towards my treatment. To see the list of lucky winners click 'media and fund raising' at the top of this page...
My Breaking News
Nearly a week has gone since my return home, taken up with getting over jet-lag, slowly, and catching up with family and friends. My physio sessions have started afresh. I have not forgotten all those wonderful people at Mass General Hospital who set about treating my tumour with such skill and me with such kindness. Thank you and thank you again to Dr Loeffler and all the team in the Proton Therapy Center – especially Juliane, Missy, Helen, Hui, Ket, Maryellen and Paul at the desk. My very special thanks too go to Kelly, Emily and their wonderful team who bent their minds and my limbs towards walking again. I shall not forget the great support we had from Leila, Maria and Michael at the International Patient Administration. Everybody succeeded in making what might have been an ordeal into a positive ‘job to be done’ and with lots of smiles along the way.
We saw Chris on Sunday and he has now left for India to start his epic bike ride from Mumbai to the Southern- most tip of the country. Lots of luck to him and his friends. Paul has run his Glasgow Half Marathon in 2 hours 10 minutes - aided by the bagpipes. Thank you for such a wonderful fund raising effort!
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That is it for the Proton Therapy and I’ve even got a certificate to prove it! All the risks of complications and delays are in the past. The last day on Friday was so straight forward as to be something of an anticlimax but the farewells to all the wonderful staff who had helped me over the past eight weeks were not easy. They have been very considerate, kind and unfailingly professional. I will be seeing Dr Loeffler after the weekend for a final consultation. We do know though that although the tumour on my cerebellum is now dead it has not been destroyed and so I am not done with it yet. The natural process of it dissolving and wasting away will take many months if not years and will be monitored by regular MRI scans at Charing Cross Hospital.
Tomorrow is my last physio session with Kelly and then the day after will be the great ‘pack’ in preparation for our return to UK. Although I haven’t liked the reason for being here in Boston I have enjoyed exploring this fine city and we have certainly been made wonderfully welcome.
Don’t forget the last day for the Raffle is 12 September and Nona has asked me to remind you to send in your stubs by that date. If you would like more tickets write to the P.O. Box address.
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The treatments and progress meetings with Dr Loeffler this week have all gone well and now there are only five days of treatments to go. We are beginning to discuss the programme of follow-up checks and scans for when I return to UK and preparations are being made for our return home. But we are still taking it one day at a time! Kelly continues to do good work on my balance at Physio Therapy.
We have news of three more great ‘Just Giving’ fund-raising events coming up. Paul will be running the streets and parks of Glasgow on 6 September in the Great Scottish Half Marathon. Christopher and friends are about to cycle two thousand kilometers in the heat from Mumbai to the South of India, with some mountains in the way, and finally Gareth and John will be holding a ‘Songathon for Alex’, the entire repertoire of Ralph Vaughan Williams songs, at Broadclyst Church, Devon on 14 November. I am so grateful for all your wonderful support and, with any luck, hope to be there for the Songathon! Check out the ‘Media and Fund Raising’ Page for links to their JG sites.
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Twenty sessions down and ten to go. A fairly routine week, if such an extraordinary process can ever be described as merely routine. Dr Loeffler was confident and reassuring in our weekly meeting. As was so often the case in my meetings with consultants at Charing Cross Hospital one or more acolytes can be present, ranging through registrars and house doctors to medical students. Their discussions can be illuminating although I am getting pretty expert on my condition myself. At Charing Cross it is widely known that I resist the description of my case as ‘interesting’ or even ‘challenging’ and what did we get this side of the Atlantic the other day? A neuro surgeon reflecting for a moment and then saying ‘Interesting!’. Some things are difficult to escape.
A special thank you this week to Juliet and Angie for what was obviously a hugely successful and enjoyable fund-raising lunch last Tuesday. The sun shone on a perfect summer occasion.
Weather forecast for the next week in Boston is sunny and hot.
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Thus ends the third week of Proton Therapy. Fifteen treatments down and fifteen to go. ‘Wait a minute’ I hear you say – fifteen is half of thirty, not thirty five which you have been telling us was the overall plan. In our discussions with Dr Loeffler on Wednesday we mentioned the figure of thirty five. He said ‘You’re kidding me. There only ever have been thirty treatments planned.’ Apparently it has been on the computer from the beginning for all departments to see. To cut a long story short we had been given the figure of thirty five by the International Patient Admin Office, erroneously as it turned out. Better than the other way round and at least it seems to mean that we will be able to fly back on our original flight as booked – but you never know!
Physio is going well and I’m being worked hard by Kelly. Thank you again to everybody for your support. Have a good weekend!
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So that was the second week of treatment. With my apologies for the delay in writing it up! No news has been good news however and the five Proton treatment sessions were fairly routine. All of them were at ten o’clock in the morning. The staff in the center are always there with a welcoming smile. They were kind enough to say that I am a model patient but when you are strapped into the cradle, 100% immobile, ‘model’ is about the only option. On Wednesday a good session with Dr Loeffler who said that progress was fine.
On Sunday we had a call from Lucinda and the twins reporting progress of Sophie and her team’s thigh-burning London Space Hop. They had made it from Hyde Park to Piccadilly Circus, perhaps on their way to a world record. An amazing idea. It’s difficult to express how moved and grateful I am by their fund-raising and really by the support of everyone who has helped me get here.
New Englanders, as well as ‘Old’ Englanders, can’t believe what has happened to their summer. Rain and fog predominate further North on the coast of Maine, heavy thunderstorms in Boston, more fog on Cape Cod and yet more dodgy weather further South in New Jersey. Two (North Atlantic) nations united in a wet summer!
This week my Proton sessions are at 1.30 pm and there are two physio sessions on Monday and Thursday to look forward to. This leaves us time to explore Boston. Also to listen to the Ashes on the Internet!
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Well, that’s the first week of treatment. Five down and 30 more to go! We’re getting the treatment sessions down to a fine art thanks to the expertise of the team in the treatment room. Tuesday after 5 o’clock when all other work there had finished Julianne, the physicist, gave us a guided tour of the installation. Awesome technology. Four treatment rooms, one of them specifically devoted to the treatment of brain tumours. It’s a very exclusive club but not one that people wish to apply to join!
On Wednesday my first appointment with Dr Jay Loeffler. We had a very good discussion and he seems confident of the outcome. Very reassuring. Also this week, two more physio sessions with Kelly.
For those of you in England, it’s been raining heavily in Boston - but the forecast for the weekend says the sun is due to come out over ‘Beantown’ with temperatures in the mid-twenties centigrade.
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Yesterday, Monday, was my first day of Proton Therapy. A significant day in so many ways after all the anticipation and activity of the last three months. So, a five minute trip to the Center and down the lift to the waiting room in the lead-lined basement. Everybody very friendly, a lot of ‘Hi Alexander’ and white coats, but I was still not quite sure just what to expect. Then into the treatment room where a charming physicist and a radiographer also in white coats explained what would happen. I was manoeuvred onto a bed-like contraption, my helmet was strapped on and my body immobilised with straps and pads. I thought ‘Have I come all this way for a bit of torture?’ To one side was the proton beam lens pointing at my head.
I was told that positioning my head and the lens was critical to getting the protons on target. So they moved me, checked with a low-powered x-ray, moved me again etc. until they were satisfied. Then all withdrew from the room. Two minutes later they were back. Was that it? I heard no protons! Then I was repositioned and another x-ray for a second ‘zap’ from a different angle. And that really was it – the whole process took forty minutes with some discomfort but otherwise not much more fuss than the many MRI scans I have had in the past.
This will be the pattern for the remaining thirty four sessions over the next seven weeks. Each Wednesday I will see the doctor to discuss progress.
One other development is that we’ve arranged for two ‘physio’ sessions a week while I’m here. So later yesterday afternoon I had another ‘physio’ session with Kelly who has some great ideas for getting me back on my feet. I’m determined to keep exercising!
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Wednesday turned out to be a very busy day. At 0830 at the Proton Therapy Center I was fitted up with a helmet device, needed to exactly position my head for each treatment. We were joined by Dr Helen Shih, a member of Dr Loeffler's team, he being 'out of town' until next week. She described in detail what the procedures for Proton Therapy would be leading up to the start of my treatment on Monday 20 July – more of that later. My next appointment was with minor surgery to implant three metal markers in my skull. I was told they would be with me for life. Finally a CT scan wearing the helmet for the team to map the markers onto an image. All this is easy to describe but it involved visits to several separate departments within the MGH complex. It was a question of finding our way to many individual buildings, some of them skyscrapers in their own right, linked by a warren of corridors at ground level. In other words MGH is big!
On Thursday, by chance, the Center had laid on an open lecture on the history and function of the Proton Beam facility. The audience seemed to be a mix of patients, doctors, administrators and physicists. I hope they understood more than I did. The equipment itself is on an enormous scale. The particle accelerator or Cyclotron weighs a hundred tons, the beam pipe requires hundreds of huge cooled magnets, the gantry supporting the final lens pointing at the patient is three stories high and so on. But at least I can now see why I have to wait ten days before my treatment can begin. Dr Loeffler’s team, involving neuro-anatomists, physicists, machinists, radiotherapists and many more, have to crunch the complex numbers and tailor make metal and plastic components all to ensure that the protons hit my target and nothing else!
While waiting we hope to fix up more physio therapy towards getting me back on my feet. The appointment for my latest physio assessment is on Monday 13 July at 0900.
Meanwhile we are settling down in Boston and have managed to do some exploring in the City. After a few thunderstorms the sun is now out and we’re in our T-shirts!
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Well! Good morning Boston! It's almost as if we hadn't been away since Carolyn's wedding here three years ago. We have moved into our apartment only yards from Mass General - indeed I can see one of the entrances to the hospital just across Blossom Street from my bedroom window. The lead up to our departure was slightly frenetic. The absolute highlight was the farewell Garden Tea Party given in the village by Juliet, Annie, Julia and Eloise - fabulous spread, ladies, and thanks for the great send-off. Today and tomorrow we are sorting ourselves out for the long stay. Weather fine although thunderstorms are forecast for Wednesday. And Wednesday is something of a 'threshold' day with my first appointment with Dr Loeffler. Watch this space...
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Great runs from Lucinda in Richmond Park and Garrett in California last Saturday 4th July. Thank you and I am proud of you both.
Check out my Media and Fund Raising page to catch up on the latest activities. Don't miss the Raffle! People are being wonderful and generous and creative. Thank you for your phenomenal support.
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EARLIER
In November 2008 I had an operation for the removal of two cysts from the area of my original brain tumour. Unfortunately this resulted in impairment to my balance and coordination requiring extensive neuro-therapy.
On the day of the great London snowstorm, Monday 2 February, I was transferred by ambulance from Charing Cross Hospital to the Regional Rehabilitation Unit at Northwick Park to start an intensive course of therapy.
The team of physio, occupational, speech therapists, doctors and nurses have done some wonderful work there on me to get me on my feet again. Progress is frustratingly slow but I'm determined to walk again and regain my independence.
On Friday 15 May I was discharged from Northwick Park, 6 months after my operation, having said farewell to all those lovely members of the team at the Regional Rehabilitation Unit - thank you all and hope you left some of the chocolate cake for the Monday team! And so I have returned to my parent's home in Wiltshire to enjoy some home cooking and to get on with my programme of therapy and exercise.
My clinical data have been sent to Dr Loeffler at the Cancer Center in MGH for him to plan my Proton Beam treatment there - I'm now registered as a patient at MGH so that's a step in the right direction.
Today 9 June we have got the news I have been waiting for. Here's a special mention for Lily the fantastic physio at Salisbury District Hospital. Great hydrotherapy!...
Thank You!
The end of the year 2009 is approaching. What an extraordinary time this year has been. It started badly with me in the acute neuro-surgery ward at Charing Cross Hospital, London. Then on a snowy day on the first of February my transfer to the Regional Rehabilitation Unit at Northwick Park Hospital was the start of three months of work to get me walking again. It was during this time that I learnt that the NHS had no effective treatment for my brain tumour but that there was a chance of finishing it off with Proton Therapy which, by the way, would require me to go to Massachusetts General Hospital, Boston and, also by the way, the NHS would not bear the cost.
There ensued the extraordinary campaign to raise the money to pay for my treatment. What an astonishing phenomenon that has been. So many kind, generous and determined people all combining to make my treatment at MGH possible. So on the 5th July we flew to Boston. The staff at the Proton Therapy Center at MGH were universally caring and determined to make the process of thirty daily treatments as stress free as possible. And so they did, together with the physical therapy team who continued the process of bending me straight.
Since our return home progress with recovery from the radiation treatment has been all too slow. I have regular appointments with my doctors back on this side of the pond and they are keeping a beady eye on me. The one uplifting thing has been the support and generosity of family, friends and of so many wonderful people that I may not have known before but now count on as very, very special friends. You have all been AMAZING!
Thank you for every single message and gesture of support and I only hope that my recovery will be sufficient reward.
Happy Christmas everybody and a Prosperous and Healthy New Year!