First follow-up

Time for my first return to the mothership following discharge last Wednesday. We decided to drive, my wife taking the wheel, as my energy is not yet up to coping with public transport.

It was very blustery around the Euston Road when I got out of the car and my beloved baseball cap flew off my head at one point. At the moment I do not have enough hair on my head to provide the right amount of friction necessary to keep a hat in place. The wind did its best to blow me off course, but I battled through until I reached the Rosenheim Building, where my first task was to deliver some biscuits to the staff in Ambi Care, who had looked after me so well during chemo and after it until I was admitted to the ward for my neutropenic phase. It was strange seeing people go through what I did just a few weeks ago. Although I do not feel entirely well yet, I am glad that treatment is over and that my path is now heading up into the light.

My wife soon enough appeared, having found somewhere to park the car outside the Congestion Charge boundaries and after a little while the consultant called us in. She told me I was looking well, which is a very reassuring thing to hear from a specialist! We reviewed my time in hospital and how I was feeling now, which is in essence normal for this quite early stage in my recovery. Follow-ups will continue on a monthly basis, except if there are complications and after six months a bone marrow biopsy (whoopee!) and a CT scan will be carried out to see if my disease really has been knocked for six. I fully expect that it will have been, but there is no way around the need for proper investigations.

I will ring the hospital tomorrow for my latest blood counts as there was not enough time for today's sample to be analysed.

There had been torrential rain during the afternoon and this caused flooding on the Westway and really terrible traffic jams over much of our route. Along the way a white Lamborghini cut in front of us; its registration was HRO 1N and we could not help wondering whether this was a clue to the occupation of its owner.

We arrived home from Central London in the length of time it normally takes us to reach Birmingham and we were almost beyond food when we got back to Twickenham. My sense of taste is still quite disrupted, with only some of the flavours in any given food item making their way to consciousness, but I wolfed my supper down nonetheless.

I was going to wrap up this blog quite soon, it being a year since my diagnosis. After talking to the specialist today however I am minded to carry on for the next few months so that there is a record of my recovery as well as of my treatment. I continue to hope that this will be helpful and informative. Also, I get my laptop back from repair tomorrow, so you may find more pictures appearing in due course.

One final thing before I sign off today: a wonderful and kind friend called John Penny has taken it upon himself to run the Ipswich half-marathon for the benefit of research into Waldenstrom's. The race is on 25 September and you can find John's justgiving page at justgiving.com/John-Penny

This is a rare disease and therefore attracts relatively little in the way of research funds. It is at the same time related to some other conditions such as chronic lymphocytic leukaemia and multiple myeloma, so that research could throw light on these and other diseases. It is often by concentrating on small areas that a bigger picture can be more effectively formed, as has been shown in stroke research. Whatever support you can give John in his mighty enterprise will be greatly appreciated.

Another lazy day

Energy still not up to much, so I finished watching "The Pacific", including the special features, among which were snapshots of the lives of the principal figures in the historical drama. The whole thing is in fact more documentary than drama and the sequences of military action are among the most harrowing you can expect to see, the conditions in the Pacific theatre being particularly grim: constant rain, impenetrable jungle, mud and an enemy in the Japanese that just did not give up, surrender being a matter of dishonour.

The producers did a good job of showing how the Japanese fought, without demonising them. The real enemy in the drama seems to be war itself: brutalising and dehumanising while at the same time being a seeming constant of the human condition, a curse of our nature.

As I get older I lean more towards pacifism, at least as an aspiration, and seek to learn more about what builds peace between individuals and nations.

Tomorrow I go back to UCLH for the first of my regular post- discharge follow-up appointments. Will let you know I get on.

Low energy

I have been fit for very little today other than to sleep and watch episodes of "The Sopranos" and "The Pacific" back-to-back on DVD. I keep having to tell myself this is normal for the current stage of recovery.

I wonder if hair and energy will return together, as was the case with Samson...

Rugby day

I went into Twickenham again today, this time to supply the computer repairers with the power lead for my ailing laptop. The basic procedure they tried first did not fix the problem and so they are going to take other measures that mean it will be Monday at the earliest before I am reunited with the machine.

My walking was definitely less laboured than yesterday. Another difference was that we were sharing the pavements with hundreds, building to thousands, of rugby supporters walking up the main road from the station to cheer one of four teams playing in two matches at the RFU Stadium in the afternoon.

I really enjoy watching a good game of rugby: so much more satisfying than football and with a mystique engendered by the labyrinthine incomprehensibility of the rules, although the true aficionado must be reckoned above that basic, naive level of enjoyment.

Hard though to get away from the notion that the game brings out swagger and bravado in spectators of both sexes and that the game is a mass sublimation of some of the most aggressive tendencies of our species. It is also an opportunity for some to consume alcohol in epic quantities, some of the fans being barely able to walk by the end of a match (sometimes even before). In consequence brightly coloured team shirts are stretched over burgeoning bellies that their owners would, unlike their heroes, have difficulty in hauling from one end of a pitch to the other.

Overall there is a good atmosphere here on rugby days but we are beginning to find the increasing number of fixtures and the resulting noise and disruption a little bit old. Our thoughts move tentatively in the direction of moving somewhere less on the public map. Early days, though.

First stroll

I have been on my own for much of today, my wife and daughter having gone some miles for my wife to buy a second-hand bike she had seen advertised in the local paper. It is now sitting in our kitchen, there being no room in the garage until our son takes his own bike to his new home. It is a bargain, having belonged to a teenage girl whose interests had moved on from cycling (after not very long, it would seem). My wife lost her last bike to a nasty opportunist in the time it took her to walk through the house to unlock the garage doors. The thing that still grates is that I saw the weasel wobbling his way up our road as I walked home. Perhaps this new addition to our inventory, in its pleasant shades of grey and lilac blue, will exorcise the sense of violation. Melodramatic? No: theft is vile.

I have mostly let the world go sunnily by today, our shaded front room coming into its own as a cool haven on warm days like this. I did stretch myself a bit by learning some more about the software application, Scrivener, which I intend to use for larger writing projects (you read that here first).

The other task of today was to stroll (struggle, more like, so depleted is my energy) into Twickenham to take my computer for repair. There have been some changes at the repairers: not a baggy beanie in sight and the helpful young man I spoke to did not come across like Comic Book Guy from The Simpsons.

After a brief sojourn in Waitrose to buy bread flour and fume inwardly at a young woman who blithely joined the "six items or less" (shouldn't that be "fewer"?) queue with a basket overflowing with at least a dozen articles, we made slow progress back home. I have to remind myself that this is only my second full day out of hospital.

Supper of jacket potato with various fillings proved restorative, as did the hot garlic pickle dolloped on the side of my plate. This was from a jar given to me by my mother-in-law, who knows my weakness for such piquant treats.

Piccies!

I could drone on endlessly about the joys of setting up our daughter's new computer and how even the packaging of Macs is a thing of beauty. I could even excite your schadenfreude by saying that even Macs and iPhones are not without their issues and telling you how my phone has been giving me trouble over the last few days by losing its network connection every two minutes, necessitating a hard reset today followed by fun and games restoring all my apps. Don't you hate it as well when you key in a whole load of correct information, only for a website to ask you continually to review it: loop, loop, loop until you go insane or, as my daughter and I did with Skype last night, give up swearingly?


My own computer developed an issue when I was in the hotel and I am having to log into a guest account until such time as I have enough energy to present the ailing laptop to the beanied geeks down the road.


One of the problems in hospital was that I did not have a wireless connection, meaning that I was dependent on my phone for blogging via 3G (ooooh!). This made including pictures so tricky as to be impossible and so I thought you might like to see some shots from the last couple of weeks or so. Here goes...

The Ragam Restaurant (South Indian) in Cleveland Street, where I first discovered masala dosa 21 years ago: fermented rice-flour pancakes filled with spicy potato mash and eaten with coconut chutney and hot, sour sambar (a vegetable curry). Had a couple of meals here before succumbing to chemo and hospital catering. The Ragam still has paper tablecloths, really low prices and fantastic vegetarian offerings: treat yourself!

Quite!

16 August 2011: my stem cells are brought up from the vaults in UCLH.

The little pink army of stem cells marching to my rescue.

Rainbow seen from my hospital window on the 16th floor of UCLH.
A double, in fact.
The long roof in the foreground is that of The Wellcome Trust.

The driest chicken sandwich imaginable, shown at the point where I finally had to concede defeat and abandon it. In the background is a bowl of tinned fruit. Hospital food was a struggle, friends.

Rosy-fingered dawn over the City of London, 28 August 2011. This glorious sight filled me with hope.

Don't spare the horses

I did not have to do very much to get where I am now: only lift my feet, wearing shoes for the first time in over a week, in an alternating forward-oriented sequence to reach the smart grey Renault ambulance waiting at the rear entrance of the hospital. Did not even have to tell the driver our address as he keyed it into the satnav from his printout. The journey door to door took less than an hour and here I am, having swapped hospital bed for squashily familiar family sofa and bleeps and buzzers for the sound of our cat asking for food.

Before release there were a number of formalities. The PICC line was removed without any fuss in the time it takes to exhale a deep breath; an American-size grocery bag of drugs was handed over; I was handed a medical certificate freeing me from work for the next few months (as the Australian nurse said this morning, "it's pretty drastic, what we've done to yez").

I arrived home to a letter advising me of my first follow-up appointment, on 6 September. Once more an outpatient.