Monday July 21st

Message from Tom:
I have been busy over the last couple of weeks recovering stamina and strength and trying to keep up my nutritional balance. There has been intense planning on lots of people’s parts to realise this trip to Switzerland and we are almost there. We leave tomorrow at 1 p.m. for a 14 hour journey to Nyon for a eight day holiday at paleo Festival. I have met lots of interesting people this week one of whom is in a similar position to me (c4 complete, is no movement below shoulders) but 26 years on he was teaching me lots of ingenious but simple techniques for achieving seemingly impossible tasks. I met another patient who was a 16 year old boy with a C5 complete injury who was being extremely brave.

PS We arrived safely in Nyon, Switzerland, at 7am Tuesday 22nd July and were listening to the bands at the Paleo festival by 8pm. We returned in the evening July 29th after a great week.

Monday July 7th

I saw Tom on Monday. He was in fine form, definitely getting better and eager to be allowed up out of bed. He is attached to various tubes – for nutrition, treatment, drainage and so on, but both his surgeon and clinician were encouraging about his progress and I suspect that he will be getting up today. He is doing computer programming right now to keep his mind busy, though was also able to watch some Tennis over the weekend, and Ellen, Susie, Michael, Suzie (his assistant), Louise (Ellen’s sister) and other family and friends have been visiting him in St Andrew’s ward. Thank you all for the messages.

Good Progress

Date: 02.07.2008 03:28
Objet: Update on Tom’s 3rd operation ( 1st July 2008)

Dear all,

Some of you know that I came back early from Italy this last weekend after hearing from Tom that his CT scan showed more grumbling infection in his neck, despite recent intravenous antibiotics. The neurosurgeon he saw on Friday proposed removing the titanium plate which was changed last August, to help resolve the infection.

David was with Tom over the weekend; I arrived late on Saturday, and met the 2 consultants involved with Tom on Monday before the final decision to operate.

So that’s what happened today; the metalwork is out. It was a 3-hour operation, and Mr Jamous is cautiously optimistic that the bone at the back and sides of Tom’s cervical vertebrae will provide enough strength for him to continue his rehabilitation where he left off, without putting in more metalwork. It seems that Tom may not even need to wear a ‘collar’ or neck brace this time round – this is much better than what we had envisaged.

Tom now has a beastly sore throat with lots of swelling, and is ravenously hungry after 24 hrs of starvation, but was cheerful and alert when I went to see him immediately after the operation. He stayed awake and watched Wimbledon with Ellen all evening. He’s back on the acute spinal ward for a while, but if all goes well he will soon be back on St David’s, the rehabilitation ward.

Scary times, but it was entirely wonderful to see Tom looking strong and apparently undaunted after yet another operation. It does seem worth a great deal of short-term discomfort to be rid of the source of continuing infection.

We are so grateful to everyone who has written to Tom or posted comments on his website, and of course for magnificent support for the Pavilion Fund. I am meeting the project manager David Kemp again soon, to move on from the drains and ground clearance stage – alas, no more rhubarb grove beside the walled garden – with a view to getting started on the Pavilion structure, which will house the Exuberant Trust’s grand piano and performance space, as well as Tom’s stack of computers..

More anon ..

PS .. For anyone who wants to know more about how patients survive and move on after spinal injuries, Tim Rushby-Smith’s fast-paced, unputdownable, autobiographical ‘Looking Up’ – recently published (May 08) – is a must. Our 2 copies are looking distinctly dog-eared after going round the family. Tom would have liked to go to Tim’s book launch in May, but missed it because he had not been feeling well that week, and because he didn’t then have a PA to drive him up to London. Now he does have a PA, and once the infection settles properly he’ll be even more resilient and active than before.

Under Doctor’s Orders

Tom asked me to update everyone with his latest news:

“I met my surgeon on Friday and he says the only way to get rid of the infection in my neck is to remove the Titanium plate. I am due to have the operation later today – Tuesday July 1st. Rather short notice, but it seems that it is essential, so here goes again. I am back to St Andrew’s Ward tonight. More news in a day or two”.

14.15 message from Susie “Tom is awake with a very sore throat but fine in every way. Surgeon happy. Me too”

Easter 2008: Important message to all readers at the end of this post

David here: I returned from an intensive week of work with colleagues from international organizations in Bangkok to join Tom in Stoke Mandeville on 21st March where he was on excellent form full of plans and ideas (he really enjoyed the visit by the Bleasedale family…) and with much progress to report.

After lunch his mum Suzie and sister Polly came in the van and we went in convoy for his Easter “out” at his grandfather’s house – The Limes in Standlake. It was great that Ellen was able to come later in the evening: she is on grand form.

Next day – Saturday – it was snowing one minute and bright sunlight the next: Gillian, Josie and Lucas who came in from New York on the 21st joined Tom, Ellen and Polly – Josie and Lucas had rides on his chair: Ellen and Polly organized a difficult Easter Egg hunt in the garden where Tom’s keen “spotting” skills were much in demand. The house was decked out with orchids kindly provided for Tom by some of my colleagues at the Bangkok meeting (pictures follow).

After eating together Gillian and Josie went on to my sister, Ruth’s, in Essex…Lucas and I stayed in Oxford so that we can join Tom on today’s expedition to see one of the football games of the season….

And there is great progress on the steps towards the construction of both the extension and the pavilion at The Limes following a meeting with Charetered Surveyor David Kemp to look at builders’ proposals on 22nd morning.

Tom and I go to Cardiff later in the coming week to join Ellen and see the fruits of her labours on her latest stage-set design project.

It is nearly a year since Tom’s accident – and after 12 months of quite stormy recovery Tom is stronger and more focused than ever. I am putting together a collection of notes to him – if you would like to contribute do put a comment on the site under this post, or if it is easier, mail me direct at either or indicating whether your message is private for Tom or OK to put on this blog with others. I will put the messages together for him during the first week of April.

29th of February 2008

Since Tom’s arrival at Stoke Mandeville Hospital in early April and transfer from Critical Care to the Spinal Injuries Centre at the end of that month, Tom has been under the care of Dr Alison Graham and her team. Much of the day to day contact was with Senior Registrar Dr Raj Singhal. Raj – who first heard about Tom on April 3rd 2007, within hours of the accident – always made himself available when care was needed, He took great pains, and never appeared rushed, when explaining what he thought was happening to Tom, Ellen and the family. He described some of the dilemmas with care and indicated the rationale for clinical decisions as well as working closely with nursing and therapeutic staff. He joined the surgical team that performed the marathon operation to repair the neck fixations in August 2007.

Raj was due to leave the Centre at the end of February to take up a Consultant position in New Zealand. Tom told our friend Peter Leisinger (a Swiss doctor, painter and wood sculptor living in Malans, near Davos) that he wanted to give Raj one of Peter’s paintings. Peter chose an aquarelle of Box Hill and sent it from Malans to his daughter Claudia in London. Claudia had the painting framed in London and then brought it to the Centre with her fiencee Leigh on February 24th. Tom then gave the framed painting to Raj on his last day (February 29th) as a reflection of his gratitude for all that Raj did for him during the ten month period since the accident.

29 February 2008 Tom and Dr Raj Singhal

29th February: Dinner: Tom, Ellen, Laura, David

29th February 2008: Dinner: Tom, Ellen, Laura, David

1st March: Standlake: Tom, Ellen with Michael and David

1st March 2008: Standlake: Tom, Ellen, Michael, David

January 19 – 20

We had a great weekend in Standlake – Tom, Ellen, Hazel, Raj with Michael, Susie and me intermittently. We sat and talked, watched films, ate supper, walked in the rain, watched a film and had a great time. Full set of photos is in the flickr collection (go to sidebar or to