I was going to go all dramatic on you and take the line of "Here I am at last: inside the belly of the beast", but that would be to deny all that is good and positive about my present experience. There will, I have no doubt, be times when I want to be anywhere but here, being put up, with my wife, in a four-star hotel in one of the great cities of the world and receiving a standard of healthcare (damn it, any care) that is second to none, but this not such a moment.
Yesterday was long and eventually tiring, but went as well as such a day possibly could: we got here on time, walking with our wheelie cases from the Tube station to the hospital past the boarded-up windows of a branch of PC World that assured its customers that it was indeed still open for business in the face of the recent rioting. We were welcomed into Ambulatory Care with warm and generous smiles and waited a while before a haematology registrar briefed me further on the next stages, obtained my written consent to proceed with high-dose treatment and examined me.
After a while of watching the rolling 24-hour news repeating the same footage of looting and mayhem and of a particular policeman hacking at the legs of a particular rioter, it was time for the next main business of the day: the insertion of the PICC line that would be the tiny conduit for the various drugs that would, we trust, knock my Waldenstrom's into the long grass for some years to come. "PICC" stands for "peripherally inserted central catheter", a fine plastic tube inserted in the inner edge of the upper arm and snaking its way painlessly into a descending blood vessel close to the heart.
A cheery nurse from the PICC Team greeted me and took us to the room where the procedure of insertion would be carried out. She showed me a sample of line, explained possible complications: for example, the line working its way too far out of my arm, possible infection of the insertion site, a blood clot forming in the line... The procedure required two people to carry it out (three, if you count the cooperative patient): the nurse who was doing the explaining would monitor the progress of the line through my body using ultrasound while her colleague, who had by now entered the room and was gowning up, would administer local anaesthetic and push the line by means of guides progressively withdrawn where it needed to go. What she didn't mention, but which soon became apparent, was what a wonderful comedy double act the two of them would turn out to be. Lots of jokes followed as the undoubtedly serious business of creating a sterile field of operation on my left side took place and the procedure got under way, the only painful moment being the injection of local anaesthetic, after which all was numbness and vaguery from my point of view. Really, they were a great pair of people, specialised, dedicated and professional, but with all the unfakeable warmth of humanity. At the arm end a 2cm length of line poked out and to this were attached the two tubes and the nozzles (lumens, I think they are called) through which chemo and other substances, including nourishment if I get too ill to eat, would be administered over the next days and weeks.
The ultrasound guidance technology is new to UCLH, although by now well established in the USA. So far the hospital has performed something over 60 insertions by this method and when they have done 100 they will no longer need to send patients across the road to the main hospital for a chest X-ray to establish that a line has been correctly positioned. So it was that we made a short trip to the mothership, where there was not too much of a wait before the shadowy image on the radiographer's screen showed the narrow gauge line snaking its way from my arm, alongside my left collarbone and then plunging vertically into the centre of my chest. Result; and one which is more consistently happening first time now that ultrasound is being used.
Next, after lunch (for me, of a hospital chicken sandwich; for my wife, of a Sainsburys equivalent) came a discussion with the departmental pharmacist about the raft of medications that would address the inevitable side effects of chemo. Some of these were familiar, but new to me was an antiviral, Aciclovir, to be taken prophylactically against any little gremlins that might be lurking in my system ready to have a party at my expense once the watchmen of my immune system had been knocked unconscious by chemo. The other new kid on the block was cyclizine, an antihistamine, to be taken in the event that the other two anti-sickness meds I was to receive proved inadequate to the task; this would make me drowsy but it remains to be seen whether I will need it's help.
This was a busy day in Ambulatory Care, so were set loose to wander the local streets for an hour in the mild sunshine. We ambled down as far as Gordon Square, where a plaque informed us of the names of The Bloomsbury Group, who used to hang around each other's houses and hop into each other's beds only yards from where we stood looking at their photographs.
We returned to hospital for a full briefing on the workings of Ambulatory Care and how it interacts with the hotel where we would be staying just five minutes away.
Finally it was time for the first drugs of the day: a shot of anti-emetic Ondansetron through the new PICC line, followed by capsules of Lomustine. There were no less than 11 of these, nine blue and two white. Had I been Neo in "The Matrix", who was only given one blue and one white pill and had to choose between them, my psyche would by now have been shattered into a million fragments and hurled to the furthest corners of cyberspace. As this is real life and not a blockbuster game-changing movie (that you owe it to yourself to see if you have not already done so) I am just experiencing mild nausea. Shame; the fantasy version sounds interesting.
Equipped by now with a goody bag of accumulated drugs, we made our way to check in at The Grafton on Tottenham Court Road, where 10 days have been prepaid, including breakfast (full English for me, as you may have guessed, as long as appetite permits).
The room is comfortable, clean and well equipped. We took a stroll to Charlotte Street for an Italian meal, which was delicious but rather slow in delivery since the keenness of our waiter was fighting a losing battle with the inadequate staffing levels set by his employers.
By 10 pm we were both very tired; it had been a day of new faces, much information and a measure of discomfort. Sleep soon came, though in my case it was disrupted by being a bit too hot and the unfamiliarity of my surroundings - sure I'll get used to it.
After a good breakfast we have now been sitting here for a couple of hours, my wife with a good book, me with a newly dressed PICC line through which etoposide is drip dripping. In the background the TV is showing live the debate in Parliament about the recent riots. Watch this space or, rather, these spaces.
Yesterday was long and eventually tiring, but went as well as such a day possibly could: we got here on time, walking with our wheelie cases from the Tube station to the hospital past the boarded-up windows of a branch of PC World that assured its customers that it was indeed still open for business in the face of the recent rioting. We were welcomed into Ambulatory Care with warm and generous smiles and waited a while before a haematology registrar briefed me further on the next stages, obtained my written consent to proceed with high-dose treatment and examined me.
After a while of watching the rolling 24-hour news repeating the same footage of looting and mayhem and of a particular policeman hacking at the legs of a particular rioter, it was time for the next main business of the day: the insertion of the PICC line that would be the tiny conduit for the various drugs that would, we trust, knock my Waldenstrom's into the long grass for some years to come. "PICC" stands for "peripherally inserted central catheter", a fine plastic tube inserted in the inner edge of the upper arm and snaking its way painlessly into a descending blood vessel close to the heart.
A cheery nurse from the PICC Team greeted me and took us to the room where the procedure of insertion would be carried out. She showed me a sample of line, explained possible complications: for example, the line working its way too far out of my arm, possible infection of the insertion site, a blood clot forming in the line... The procedure required two people to carry it out (three, if you count the cooperative patient): the nurse who was doing the explaining would monitor the progress of the line through my body using ultrasound while her colleague, who had by now entered the room and was gowning up, would administer local anaesthetic and push the line by means of guides progressively withdrawn where it needed to go. What she didn't mention, but which soon became apparent, was what a wonderful comedy double act the two of them would turn out to be. Lots of jokes followed as the undoubtedly serious business of creating a sterile field of operation on my left side took place and the procedure got under way, the only painful moment being the injection of local anaesthetic, after which all was numbness and vaguery from my point of view. Really, they were a great pair of people, specialised, dedicated and professional, but with all the unfakeable warmth of humanity. At the arm end a 2cm length of line poked out and to this were attached the two tubes and the nozzles (lumens, I think they are called) through which chemo and other substances, including nourishment if I get too ill to eat, would be administered over the next days and weeks.
The ultrasound guidance technology is new to UCLH, although by now well established in the USA. So far the hospital has performed something over 60 insertions by this method and when they have done 100 they will no longer need to send patients across the road to the main hospital for a chest X-ray to establish that a line has been correctly positioned. So it was that we made a short trip to the mothership, where there was not too much of a wait before the shadowy image on the radiographer's screen showed the narrow gauge line snaking its way from my arm, alongside my left collarbone and then plunging vertically into the centre of my chest. Result; and one which is more consistently happening first time now that ultrasound is being used.
Next, after lunch (for me, of a hospital chicken sandwich; for my wife, of a Sainsburys equivalent) came a discussion with the departmental pharmacist about the raft of medications that would address the inevitable side effects of chemo. Some of these were familiar, but new to me was an antiviral, Aciclovir, to be taken prophylactically against any little gremlins that might be lurking in my system ready to have a party at my expense once the watchmen of my immune system had been knocked unconscious by chemo. The other new kid on the block was cyclizine, an antihistamine, to be taken in the event that the other two anti-sickness meds I was to receive proved inadequate to the task; this would make me drowsy but it remains to be seen whether I will need it's help.
This was a busy day in Ambulatory Care, so were set loose to wander the local streets for an hour in the mild sunshine. We ambled down as far as Gordon Square, where a plaque informed us of the names of The Bloomsbury Group, who used to hang around each other's houses and hop into each other's beds only yards from where we stood looking at their photographs.
We returned to hospital for a full briefing on the workings of Ambulatory Care and how it interacts with the hotel where we would be staying just five minutes away.
Finally it was time for the first drugs of the day: a shot of anti-emetic Ondansetron through the new PICC line, followed by capsules of Lomustine. There were no less than 11 of these, nine blue and two white. Had I been Neo in "The Matrix", who was only given one blue and one white pill and had to choose between them, my psyche would by now have been shattered into a million fragments and hurled to the furthest corners of cyberspace. As this is real life and not a blockbuster game-changing movie (that you owe it to yourself to see if you have not already done so) I am just experiencing mild nausea. Shame; the fantasy version sounds interesting.
Equipped by now with a goody bag of accumulated drugs, we made our way to check in at The Grafton on Tottenham Court Road, where 10 days have been prepaid, including breakfast (full English for me, as you may have guessed, as long as appetite permits).
The room is comfortable, clean and well equipped. We took a stroll to Charlotte Street for an Italian meal, which was delicious but rather slow in delivery since the keenness of our waiter was fighting a losing battle with the inadequate staffing levels set by his employers.
By 10 pm we were both very tired; it had been a day of new faces, much information and a measure of discomfort. Sleep soon came, though in my case it was disrupted by being a bit too hot and the unfamiliarity of my surroundings - sure I'll get used to it.
After a good breakfast we have now been sitting here for a couple of hours, my wife with a good book, me with a newly dressed PICC line through which etoposide is drip dripping. In the background the TV is showing live the debate in Parliament about the recent riots. Watch this space or, rather, these spaces.
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