Wednesday, 31 August 2011

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.

Tuesday, 30 August 2011

Homeward Bound

With neutrophils of 1.5, a reasonable white-cell count and haemoglobin of 10, I have been declared fit for discharge. The taxi home, courtesy of the NHS, will pick us up at 10.30 tomorrow morning, our luggage augmented by a stack of pills for me to continue taking while "on the outside".

Quietly celebrating, I have been passing the time today reading Trollope, listening to Madonna and Bach and reacquainting myself with the first "Iron Man" movie, surely one of the strongest realisations of a superhero on screen.

When at home I am likely to be "Wobbly Man" for quite a few weeks. "Just do what you can each day" is the advice I have been given.


Remiss of me not to have told you of a particularly happy ending that took place in the early hours of Monday morning.

In my morphine- induced slumber I had seen a small harbour at the end of a snaking narrow estuary. As a small boat docked there I felt a warm pressure in the area between my buttocks and awoke. So far, so Freudian.

When I went to the loo very shortly afterwards it was clear that the abscess (for such it surely was) that had been causing me such agony over the last few days was no more. My renewed cells had done battle with the forces of E-coli and proved victorious in their first big engagement. It was left to me to clean up the battlefield. The slowest realisation to dawn was that the really terrible pain had gone.

The rest of yesterday was spent happily but quietly, much of it in sleep.

Sunday, 28 August 2011

Victory Lap

Sister Morphine slowly enfolds you in a gentle blanket of sleep for two hours but then drops you on the floor, where you lie wondering who precisely you are and quite how you got there. Two such sessions plus an unmedicated doze however saw me through the night in reasonable comfort.

While the beam end is still extraordinarily painful, I found the doctor's assurance that the affected area looks better and should improve in "leaps and bounds" over the next couple of days immensely heartening. That and his confirmation that I am no longer neutropenic (neutrophils now 1.5) and can reasonably expect to go home on Wednesday gave me a real lift, which I celebrated with a walk around the ward, my first steps outside my room in over a week. I was concerned that there is no natural light in the nurses' own stations. Another triumph for PFI.

I have indeed spent substantial portions of today out of bed, a fact not lost on my family, who made a jolly visit here today.

In spite of all these positives, I think I will still be pressing the buzzer to summon Sister M to my bedside again tonight.

Saturday, 27 August 2011

Sister Morphine

Things have maintained an upward trend today.

My sore throat is all but gone and my appetite continues to strengthen in spite of the challenges thrown to it by hospital catering. My digestion is settling down and I am no longer bloated.

I have received two units of red cells, the tiny soldiers (none of them below the rank of corpuscle) marching in with musical accompaniment.

My neutrophils are now at 0.5, which means that, though immunocompromised, I am no longer neutropenic.

My already shaved hair is now removable in clumps, but I say "fie!" and "pish!" to that.

The pain at my rear end is worse however, more sharp and focused. While this is some of the worst discomfort I have ever experienced, it may have an encouraging explanation. Now my neutrophils are active again, they are doing a much better job than any antibiotic in locating any locus of infection and feeling with it. The, er, location referred to has long been suspected as the the point of origin of the infection that has been causing my temperature to dip and dive over the last few weeks so the pain could simply reflect a massing of cells all doing battle down there.

The doctors have approved me for modest doses of oral morphine to quell the pain and I am now just awaiting the first dose. My first acquaintance with Sister Morphine...

Friday, 26 August 2011

Potassium and Schubert

After the usual night of sleep interrupted by clinical observations, changes of drip and the like, I awoke in better heart and strength than on previous days. I even ate a clementine with relish, the first sign of returning appetite.

The morning was pretty upbeat, the afternoon onwards, I am afraid, less so. I have been feeling increasingly exhausted and breathless and in consequence more easily irritated. The reason is that I am more anaemic, with a haemoglobin of 8.1 and falling, than I have ever been before. Once Hgb goes below 8 blood transfusion is a priority. I will be given a transfusion at 6am tomorrow, but this is delayed because, in my case, platelets are a priority and the platelets initially delivered were wrong for my particular blood sub-type. Cue more irascibility from me, but the Portuguese night nurse was the embodiment of calm and reassurance. I apologised. They do not want to give me my first ever transfusion overnight in case I have an adverse reaction, but at least the right platelets were eventually stolid and have now become part of me.

Appetite has definitely perked up, although hospital food continues to undermine it. A passable piece of fish was served up with Smash reconstituted with cheap margarine, well at least that's what the "creamed potatoes" tasted like to me and my wife. I chewed most of my way through a dry chicken sandwich but in disgust consigned the final few mouthfuls to the flames of Hell...sorry, the bin.

Jamie Oliver will be hearing from me when all of this is over. I will also be asking the dietician what input she is able to have into the sort of food served up to patients. The public canteen is poor too. Every time I see such mediocrity I hear the snicker-snack of scissors cutting corners.

Sorry if I give the impression this has been a bad day. Far from it.

We had a visit in the morning from a very nice Anglican chaplain and have asked to take Communion.

Exhausted in the afternoon, I reclined on the wonderful adjustable bed. As potassium dripped into my arm, my soul received an infusion of Schubert's wonderful three late piano sonatas. It always makes me weep that such a supremely gifted composer died so young: what would he not have gone on to write? The sublime Franz takes you on rich emotional journeys, distilling a mass of melancholy into a short phrase and then bringing the sun out.

Thursday, 25 August 2011


Today I have been nourished in so many ways.

First up was the resident complementary therapist, who from her armoury recommended a reflexology treatment. This sent me into a lovely doze, so profoundly relaxing that I was unaware when she left the room. Recommended!

Next appeared a Roman Catholic lay minister, who used the helpful expression "The Sacrament of The Present Moment". We had a very fruitful talk about how suffering can work good in our lives. She called in because the dear staff on the ward were hazy about my chosen Christian denomination. No matter; it was a blessed conversation. She promised to call by again and also to let the Anglican chaplains know that I would like to see them.

Shortly after that a Buddhist friend offered me these words from Nichiren Daishonin: "Suffer what there is to suffer, enjoy what there is to enjoy".

Then my family arrived and there was much joking about the polythene aprons they had been asked to wear before entering my neutropenic microcosmos.

Then a consultant I had not met before appeared with four juniors. She was reassuring about my progress from now. My white-cell count has risen to 1.7. Other counts could be expected to rise at their various rates over the next few days. My abdomen and anus remain pretty uncomfortable but I am able to live with them. You should hear what they say about me!

A counsellor called in and we spent an hour reviewing my earlier and current experiences of this odd cancer and its treatment and looking to life beyond hospital. She will also call in again.

Final treat was a visit from a Twickenham friend.

Flies in the ointment? My hair is removable in clumps and hospital food is for the most part dire. Small potatoes (metaphorical, naturally).

All Time High

Maybe I spoke too soon, as during the night my temperature once again rose above 38 degrees C.

By the morning however it was much nearer normal and I was able to shower quite early. That wore me out and I crawled breathlessly back to bed, where I have been for much of the day, with very poor appetite and little energy, proving poor company for my brother, who spent most of the day here.

We did manage to reminisce about the old Middlesex Hospital and I watched "Transformers" (possibly the noisiest film I have ever seen, a lot of the din consisting of American military personnel shouting "Incoming!").

Worse was to come with the temperature, which in the early afternoon spiked at 39.2 degrees. It came down to around 37.5 with the help of further antibiotic and paracetamol , but it was all rather exhausting.

Just before I started writing this it had once again risen above 38, so cue more antibiotic and paracetamol, which has now kicked in so that I am sweating profusely.

I am told the doctors may decide to put me on an even stronger antibiotic tomorrow. Let us wait and see.

I am still trusting and thanking God.

Tuesday, 23 August 2011

Reasons (mostly) to be cheerful

As I learned on my student days, the best conversations can take place after midnight. The conversation I had at around 1.30 this morning convinced me further that the Private Finance Initiative, which provided us with such buildings as the current UCLH is a flawed arrangement. Goodness knows the health service needs managers and leaders of vision, but to make the profit motive so paramount sets up a conflict of interest with healthcare.

I am not going to break the confidentiality of any staff members here, but suffice it to say that I have seen with my own eyes noticeable deficiencies on the part of the service company, connected with the ultimate owners of the building, in my time here. My bathroom has not been cleaned, nor the floor of my room or its (with some exceptions) fittings, during my stay.

I am only glad that the new dedicated Cancer Centre is not a PFI building, two-thirds of its £150m construction and fitting out costs having been provided from the sale of The Middlesex Hospital site.

Today I was allowed to take imodium to suppress my diarrhoea and my temperature decided to rain on the parade by again rising above 38 degrees C. As I was writing this another reading was being taken and it is currently 37.5.

Although not wishing to overstate, I have been a bit more energetic and alert. I also chose to ignore the standard food offered by said service company, another example of its derelictions, and to choose ethnic food, provided by smaller, independent companies: Afro- Caribbean curry goat (in fact, mutton) today and Asian tomorrow. It was a wise decision as my meals today have been appreciably more appetising.

My wife met a friend for lunch and then brought her to visit me. I watched "Iron Man 2" and it proved not nearly as poor as the critics say, although not up to the standard set by the first movie.

My wife has now gone home to sleep on our wonderful mattress and will come back tomorrow evening. Tomorrow my brother will be here to watch out for me.

Thanks to all for your encouraging messages and assurances of prayer. Although my counts are not coming up yet, today has seem a real improvement in how I feel.

Laus Deo!

Monday, 22 August 2011

A Rude Awakening

I had been expecting her at 6am, but here she was by my bedside a good two hours before that, reminding me that I was now neutropenic and informing me that I had a temperature exceeding 38 degrees centigrade, not a good combination at all as the fever indicated that I had an infection that would need to be urgently addressed with IV antibiotics. There would also be a ride to the basement for a chest X-ray. Strange thing was that I felt pleasantly cool. This was not a TV drama , so there was no shouting and screaming, but there were enough movement and people involved to underline that the problem would be met head-on and with urgency. This particularly excellent night nurse had already proved her worth, not least five hours before when we had had a long conversation about addressing my psychological and dietary needs, but here she was again being vigilant and active on my behalf.

So today has seen me hooked up to more drips and taking more pills and I have spent most of the day in bed, par for the course 6 days after getting stem cells back. Also today I had a transfusion of platelets to help mu blood clot better and prevent haemorrhages, and the first of a number of G-CSF injections to encourage production of neutrophils.

Diarrhoea continues to take me from my bed at frequent intervals, but the rash is fading slowly.

Most things remain an effort but I have been able to check some emails (slowly as I am without wi-fi). My temperature has stabilised for now at slightly above normal.

I could have done without the undignified bout of dry retching that assailed me (why? why?) as I arrived for the X-ray, but this has been a positive day.

Sunday, 21 August 2011


Just lost a whole entry because my phone kept missing the network.

It feels like I am short-changing you but I just do have the energy to recompose.

I am in a room on the 16th floor of the main hospital, with a view east towards The City. I still have diarrhoea, a rash and a sore throat and energy and appetite have largely forsaken me. Sleep largely avoided me last night.

Sorry to sound grudging and grumpy but we are bumping along the depths if this experience.

We press on.

Saturday, 20 August 2011

Chemo does what it says on the tin

First of all, I must honour that great English cliché "mustn't grumble". My wife returned to the hotel to take over care from my brother and we were able to watch the wonderful first of two Proms Concerts concentrated on the music of Brahms. His Third Symphony, composed after the invention of the internal combustion engine, and the mighty First Piano Concerto, written 20 years earlier when such things were unheard of, are still ringing on my ears, all driving rhythms and lush melodies.

This morning I find myself weaker than ever, every task an effort. We will shortly be going over to Ambi Care and I am going to discuss admission with the team. I have now had diarrhoea for two days; my appetite is hanging in there, but greatly reduced; everyday smells threaten to turn my stomach; cytarabine has given me a rash that shows no sign of abating; melphalan has given me a sore throat.

Mustn't grumble: my stem cells are back in my system and rescue is on the way. This is a statement of faith; right now the concrete experience of deep malaise is asserting itself.

Not sure if I will be able to see tonight's second Brahms Prom, but it would be mighty medicine.

Friday, 19 August 2011

Win some, lose some

Yesterday my son and his wife called by, having been to the exhibition called " Dirt" at the nearby Wellcome Institute. They chatted about all manner of things with my brother in our hotel while my recumbent form lobbed in the occasional contribution.

My appetite is taking a major hit and yesterday my diet was largely oatcakes, water and a couple of bananas, together with pills, of course. One indication for admission to hospital will be if I stop being able to feed and water myself.

Last night, going to bed, I decided to take an additional anti-sickness drug that has been offered to me. Cyclizine is an antihistamine and therefore acts on a different pathway from other meds on the table. It makes you drowsy, which is why I have avoided it until now, as I do not like the sense of loss of control that such drugs bring. I decided though that the time had come to succumb to its embrace and so the little white pill went down the hatch in the interests of a good night's sleep.

It paid off and I had a better rest than the night before and ate a fuller breakfast this morning. I have just seen the consultant, who has indicated to me, although the NHS promises nothing, that it is likely I will need to be admitted over the weekend. We shall see, although I am keen to stay well enough to catch a couple of Prom Concerts on TV today and tomorrow. Self- indulgent, moi?

Thursday, 18 August 2011

Uphill and Downhill

Yesterday my wife went home to be with our daughter, whose A-Level results came out today. Praise be: our beloved has gained the grades required by her chosen university and we are all very happy.

On the treatment front I am now on a slide down, increasingly weak and losing my appetite. Nothing unusual or abnormal for this stage, two days after infusion of stem cells, but unpleasant nonetheless.

More news when I can...

Wednesday, 17 August 2011

Day Zero

Yesterday my stem cells were returned to me, like a liberating army marching steadily into a bombarded landscape abandoned by defeated forces.

The analogy is doubtless imperfect as some of these millions of apparently valiant little troopers will contain within them the seeds of future disease: tiny Fifth Columnists preparing to open the doors again to the hostile army.

I sound ungrateful, but am in fact far from that desiccated state. It was a very good moment when the man from the lab wheeled his trolley into Ambi Care. On it was a shipper, a brown outer urn-shaped shell, within which was a large white insulated vessel containing four bags of my previously harvested cells frozen in liquid nitrogen.

They wanted me in a bit earlier yesterday, as patients receiving stem cells have to lie down during the procedure as well as receive premeds. Both these measures are aimed at countering adverse reactions to the preservative mixed with the cells when they are stored. Also timing is crucial, in view of the need to get cells back to a patient as quickly as possible once they are thawed.

As yet, it is not possible to pass cells down a PICC line, so a cannula had to be inserted into my right arm to take a broad drip tube. The first vein tried proved unforthcoming, so a second attempt was needed and mercifully met with success. Please do not think that cannula insertion is always horrible, but I have grown rather wary of the things, which can be painful, as they were on this occasion. Enough: this was to be a good day!

Thawing takes place in a small metal tank placed at the bedside on which water is heated to 37 degrees centigrade, a healthy body temperature. My cells had been divided into four bags so that, as the cells from one bag passed down the line into my arm, the next bag was prepped, ensuring that none of the vital cells were thawed until they were actually needed.

Soon enough the line turned pink, showing that the cells were marching down the line to my rescue. The nurses had some concern that they were not proceeding fast enough, but several flushes of the line with saline enabled swifter progress.

It proved quite a long day and I was pretty dozy for much of the time, not only as a result of the premeds but also because of the increasing fatigue induced by chemo. For several periods I listened to the healing music of Bach's Goldberg Variations, both animating and soothing at the same time.

Once the cells had been infused, there was just a final bag of saline to flush everything through and along and we were free to go, the only sign to those around me that anything unusual had been taking place being the pervasive aroma of sweetcorn from the preservative used on the cells. I am told this can last another day or two, although I, the one from whom it is emanating, am completely oblivious to it.

In the evening we went for a freshly-cooked burger as I am now advised to steer clear of eateries likely to reheat their food. Afterwards we went for a leisurely walk as far as Oxford Street, returning via a vast empty building site in Mortimer Street that I soon realised with a sense of shock was the location of The Middlesex Hospital. This was where my grandmother trained as a nurse about 100 years ago, where my father trained as a doctor in the 1940s and my brother had followed in his footsteps 30 years later; it was also where my grandfather had passed the closing weeks of his final illness in the 1960s and where I had last seen him. Now the walls and floors, fittings and accoutrements had all vanished, leaving only air. There was no indication on the demolition hoardings as to what was going to be built on the site, so here it was, thronging with the silent ghosts of the living and the dead.

Tuesday, 16 August 2011

Night Thoughts

It is 4.30 in the morning and I am having difficulty sleeping. Yesterday they sneaked a powerful steroid, dexamethasone, in with my now regular midday intravenous ondansetron to give extra oomph to the fight against nausea. Steroids are fantastic tonics, stimulants, whatever, but not recommended for prolonged periods. Dex is four times as potent as prednisolone, which I received early on in my career with this disease; I was told that would have me doing the ironing in the small hours, although what actually happened was that I watched lots of DVDs and catch-up TV. It was all productive, honest. Imagine what stimulating company Dex has proved to be in our brief acquaintance.

I have dozed, but here I am again with my eyes wide open and with my mind full of a train of thought which has been racing through my mind and which I feel I must try and set down before it disappears into the darkness of the next tunnel.

It all started with the idea that medical treatment is a seesaw or tightrope between nice and noxious extremes, Dex at this moment forming the point of balance. I then had the less gymnastic notion of treatment as a dance. In the treatment dance there are some major moves ahead as the chemo brings my health down and other elements, the principal one being my own stem cells, enter the courtly circle and stop the whole pattern's falling into disarray and my demise being unreasonably hastened. Yes, there will be some crushed toes, embarrassing gaffes and spilled drinks, but there are dancers involved who know the moves better than we novices and on the dance will go.

The thought train did not stop there, as I then had a vision of life itself as a dance, where along with smiles, joy and laughter, there are also those whose moves challenge the integrity of the whole. This week alone we have seen plenty of fights and scuffles and some have even left the dance for good, not of their own volition, but pushed out by those who think their moves are better.

If you have been following this blog you will know that I seek to follow Christ, called, with good reason and among many other names, The Lord of The Dance. I have been brought up in and experienced a number of dance styles in the Christian tradition but what endures is the deep conviction that this life is more than the temporary fleeting thing it seems initially. Not just that though: even if it is more than temporary and fleeting, it is nevertheless crucial that we live it a moment at a time, recognising its delicacy and vulnerability to changing circumstance. At this point the wise, whether they see themselves as of faith or not, find common ground and can dance together. As a Christian I long and pray for all to see the richness I have experienced in belief, but I never any more can accept that any are excluded from The Great Dance of The King other than by their own conscious choice. The way I choose to live is with St Paul, a man horribly misunderstood in our time, who said "for me to live is Christ, to die is gain". Live in the now, eternity will take care of itself.

The Lord of the Dance exhorts us not to judge, lest we ourselves be judged and I strive to live by this while also being aware that decisions need to be made as to what will ensure the dance continues or what will not only end it but bring the ballroom down on our heads.

Take the recent riots. I believe it is right for The Prime Minister to challenge attitudes and cultures that have caused such destruction to our towns, cities, relationships and businesses. I hope though that he also has wise and strong words to say to all of us about our role in the dance, including those of us with stronger family ties, education or material wealth. What have we done to encourage some to see themselves as poor dance partners? The dance is complex and there is a place for all, even the banker currently scattering all before him in his Aston Martin as if he cannot get away from the ballroom fast enough. Please do not think, by the way, that every time I see an Aston Martin I do not find myself breaking the tenth Commandment; "my neighbour's ass" may have indeed gone through some major design changes since Moses brought the tablets down Mount Sinai, but an ass it remains and its owner is still my neighbour, whether or not he or I remember that.

I love and pray for all who read this, some of you well known to me, others not at all. I value your prayers and your positive thoughts, not least as I approach what I have consistently been told is an inevitable stay in a hospital, even if it is of Aston Martin excellence.

Two of my dearest friends, currently celebrating 30 years of marriage, are respectively a priest and a choreographer. People look at their union and rejoice. This too encourages the vision I have tried to outline here. I hope you have found it interesting; if not, you can blame Dex.

Monday, 15 August 2011

Melphalan Monday

Last night as we were walking back to the hotel -from a very nice meal at a wonderful and absurdly reasonable South Indian restaurant that I used to lunch in 21 years ago in the days when lunches were not despised as the preserve of wimps and which it was extremely pleasing to find under the same management after all this time - a mere youth, whose voice, emanating from the safety of a passing car, was clearer than his good sense, insulted my bum bag as if it were a mere frumpy and outdated fashion statement.

Unluckily for him I was in time to vaporise him to the four corners of the known universe with a swift blast of Yobba Rays from the weapon recently authorised for inclusion in such bags by a secret NHS committee.

I wish...

In reality the pump within the bag delivered its last dose of noxious substance to me in the small hours of this Monday morning. Having done its duty, the pump was disconnected from my PICC line by a nurse this morning and, the bag no longer being around my waist, I have stopped listing to the left. The only reminder of of the pump's activities is an itchy rash on all four limbs from the cytarabine, for which I have been prescribed antihistamine tablets.

Today was Melphalan Monday and in the dreaded stuff went on a 30-minute drip this morning. Looks just like all the other chemo; actually they have all looked like water or even GIN, readers. I now await more concrete evidence of its presence in the form of digestive upsets and possible mouth and throat sores, although I hope to have avoided, or at least mitigated, the latter by consuming three ice lollies and two chocolate and raspberry McFlurries before, during and after the infusion. For some reason cooling the mouth at these stages is of appreciable benefit (and, even if they prove ineffective, they were yummy).

The mcFs were suggested by another WM patient who is some days ahead of me in this process and whom I had the great pleasure of visiting on the top floor of the main hospital this afternoon - my, what a view you get from there! West London spread itself before me: therapy in itself.

It was really good to see him and chat over our several experiences with treatment as well as talk of other things. He has done extremely well, all things considered, and tells me that the fact that he has conquered the oral effects of Melphalan is a source of wonder to the care team. Good on him and his wife and I hope he is able to be discharged home really soon, as he wishes.

Our daughter came up today and we went out for an Italian meal in a small restaurant in Goodge Street, where I may not have had Yobba Rays at my disposal but did have sufficient British pluck to have a pair of customers moved on from the terrace, where they were smoking. The restaurant management, being relaxed about things, allowed them to carry on indulging their unpleasant addiction at the rear of the premises, so it was only a partial victory. In the interests of a quiet life I thought better of mentioning to management that smoking in either location was illegal.

What a prig I sound! Don't care. It went some way to easing the frustration of having my laptop start failing to, er, start this afternoon, having worked earlier in the day. Having fiddled about I can persuade it boot into a "guest account", which will at least enable me to watch DVDs while I am in hospital. I may be able to organise a swift repair tomorrow at one of the many techie places based on or around Tottenham Court Road (London's Mecca for geeks), but frankly my time for organising this and seeing it through is now very limited. A bit like sitting on a time bomb.

Although computer issues can be infuriatingly all-consuming, tomorrow there is even more important work to be done. I will be getting my stem cells back, the valiant little fellows!

Sunday, 14 August 2011

A very naughty boy

Yesterday, once treatment was done, we took a leisurely stroll south to The British Museum.

The house in Bedford Square where Thomas Hodgkin lived for a while.
We saw it on the way to the museum and it looked like architects occupy it now.

We decided to have a look at mediaeval Europe, or rather at a teeny tiny sample of artefacts that survive from that distant time. Particularly fascinating and not a little amusing (as far as one could tell, deliberately so) were some wall tiles depicting scenes from the childhood of Jesus, in which he was shown as full of mischief, so much so that parents were shown locking their children up to stop them playing with him. Outrageously, he would kill people and them bring them back to life, as if practising the miracles recorded in the Gospels.  We were reminded of the young wizards at Hogwarts trying out spells on each other. These tiles by the way turned up in an English curiosity shop and one can only boggle at the chain of circumstances that brought them there and enabled such a rare survival.

In the evening the kids drove up to town and we all went out for a pizza, which was just great, my appetite proving up to the job, although coffee is off the menu for now. I look forward to renewing my relationship with that wondrous substance when the thought of it does not make me queasy. 

Slight drama with the PICC line around midnight. Dressing was full of fluid (probably my plasma) so I went over to the main hospital to have a temporary cannula put in to deliver the chemo. We don't want the nasty stuff going anywhere other than the designated blood vessel.

Slept well although the tubes' going through a cannula rather than the PICC restricted my freedom of movement somewhat and I felt a bit more self-conscious at breakfast in the hotel this morning as my left arm was covered in elasticated bandage from wrist to bicep. My goodness, the hotel has been great, the staff unfailingly kind and solicitous and the breakfasts an unrivalled source of quality nutrition. The people at the hospital tell me that patients staying there often put on weight (a good thing for cancer patients) and I have gained a couple of kilos for sure. Just as well seeing as the next few weeks will see the kilos dropping off a bit.

The PICC was duly checked in Ambi Care this morning and there is no leak, so the temporary cannula was removed and chemo administered through the line. Last dose of etoposide today and the penultimate dose of cytarabine through the CADD pump at 1pm, to be followed by the last one at 1am tomorrow. Of the chemo agents that will only leave Melphalan, to be administered over 30 minutes tomorrow morning. I say “only”…

In the meantime here are a few more pictures.

One corner of Ambi Care. Cheery, no?

The corridor to the café at UCLH, the wall exhibiting art photos on the subject of facial pain.

Floral glories in Regents Park, where we took a stroll this afternoon.

Saturday, 13 August 2011

Rougher seas

Yesterday afternoon and early evening proved a bit tricky because of a painful symptom, whose details I will spare you. Appetite was somewhat depleted and I had to force myself to eat a pasta meal piece by piece.

I rang the 24-hour helpline and reported what had been going on. Amazing how reassuring it can be just to talk to a sympathetic professional who has seen it all before. Things had in fact settled down by then and we were able to enjoy some Friday night telly, although I nodded off a couple of times.

After a reasonable night's sleep and a refreshing bath (during which the bum bag and pump have to be kept away from splashing water), the world once again looked a reasonable place. Although my appetite is proving harder to cajole, the lure of the hotel's excellent breakfast offerings won the day and I set out for the Ambulatory Care Unit suitably nourished.

Once again I am here, etoposide finding its way through the lengths of tubing into my weakening frame. I am at that stage of treatment where I expect to feel steadily worse, so that side effects need to be more actively managed. With that in mind I will have the treat of receiving my lunchtime ondansetron intravenously rather than by tablet. The cavalry is coming...

Friday, 12 August 2011

Bumming around with a CADD

It has taken me until my 57th year to wear a bum bag, but the penalty imposed by the fashion police is that I now have to wear one for four days.

Woe betide the mugger who makes a beeline for this particular item though, thinking its bulk conceals a wad of dollars, euros or sterling. What the aspirant thief would instead find is a rectangular box with push buttons, an LCD screen, flashing lights and a payload of noxious chemical, in this case cytarabine: the sort of stuff that the nurses wear protective glasses to handle but which is currently being fed into my body on a daily basis.

The box is a CADD pump or "continuous ambulatory delivery device" and its function is to deliver a measured dose into my PICC line every twelve hours. As the Americans say: "do the math". This handy little (well "-ish") machine frees me from the necessity of hauling myself over to the hospital for a shot of cytarabine at 1am over four days.

The CADD was set up, attached and its basic workings explained to me yesterday. I have now spent nearly 48 hours in its company and am less self-conscious about it than at the start. Dressing and bathing are a bit of a challenge, but not insurmountably so: the lines from my arm to the pump, for example, are of sufficient length to allow the sensitive device to be kept clear of bath or shower water.

We even went to see the last Harry Potter movie last night: my wife, the CADD and I, although the pump was not eligible for a pair of 3D specs. Terrific movie, by the way, and containing a wonderful exchange between Harry and Dumbledore in a [spoiler alert] sort of anteroom to the Celestial Realms. It went something like:
Harry: "I suppose this is all happening in my head?"
Dumbledore: "The fact it's happening in your head doesn't mean it's any less real, you know".

OK, so the last line wasn't in the film, but my wife heard it from the seat next to her.

My faithful bladder woke me up in time to hear the reassuring sound of the pump doing its work in the small hours, but otherwise my sleep was deeper than the previous night.

After another excellent breakfast at the hotel (choice of streaky or back bacon, readers!) a rather quiet day has ensued. Apparently the crack team of East German germ warfare technicians made a cock-up in their bunker deep under Tottenham Court Rd and delayed mixing up my etoposide in their nuclear reactor for a wee while, so I have had a bit of waiting around. Enough time though for me to chat to fellow patients and blog and for my wife to get her hair cut and go window shopping.

I have also seen a consultant today.
Good news: lack of funny reactions so far most likely means that the cocktail of three drugs I am on until Monday is likely to be manageable in terms of side effects.
Not so good news: on Monday the Evil Melphalan struts on to the stage, his 30-minute entry threatening to bring in its wake a state of what Mad Magazine used memorably to call "Inna Labonza".

Oh well...

Thursday, 11 August 2011

Take your PICC

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.

Tuesday, 9 August 2011

The Green Light

I lost my nerve a bit today, my usual resigned frame of mind with regard to the forthcoming treatment buckling somewhat at the edges and my stomach churning.

My wife reminded me that exercise is good for cancer patients (why should healthy people have all the fun?) and pointed me in the direction of the lawn that needed mowing. The therapy worked at least for a bit and I took the shears to the grassy borders with gusto once the mowing was done.

The tension remained though until I had ventured into Twickenham to post a letter and buy a new toothbrush (soft bristles being recommended at this stage as harder bristles would risk damaging my gums and opening the way to infections). While I was in the queue at the post office my phone rang (actually it played a marimba tune). It was the transplant coordinator from UCLH to tell me that yesterday’s blood test was fine and that the way was therefore clear for me to turn up for treatment at 10 am tomorrow morning, the first port of call being “Ambulatory Care”, where nasty chemicals are administered and one is then free to explore the surrounding area, relax, visit The British Museum and so on until such time as side effects and/or neutropenia make such fun impossible.

The experienced nurse assured me that my anxiety was just natural anticipation and quite normal at this stage: a moment flagged up many months ago is now very close. While I was never in doubt that my blood results would be fine and that Plan A would swing into action, to have it confirmed gave me a real spring in my step. The sunshine was beautiful too and my mood lifted as I went about my errands, finishing with a visit to the barber to have my head shaved and pre-empt the hair loss that would inevitably follow the imminent chemo. I find this little measure of control very helpful.

Back home to pack, no doubt cramming more than I would need into my wheely bag, including DVDs and books, as well as the Kindle that my wife gave me just before we went to France and which I have loaded with a number of classic novels. I also loaded my phone with a variety of my favourite music, concentrating on lyrical and calming pieces.

Chicken curry for supper and now writing this, while there is disturbing news of rioting and looting in cities and suburbs. 

Not long to go now.

To infinity and beyond...

Picnics before Pricknicks

Sorry, but I think I may have neglected to mention that I was going on holiday for a couple of weeks before the high-dose chemo starts. My wife, daughter and I have just been to Brittany, returning on 6 August, since when I have been collecting wits, organising finances against those moments over the coming three weeks or so when these may be difficult to get to grips with, and wondering what to pack for the stays in hotel and hospital (pyjamas, certainly).

Here are some pictures taken during our time in France...

Actually, this photo is not one of mine, but I did not take any pictures on Day 1 (aka 25/7/2011).
Thought, though, that you might like to see a picture of Normandie Express, which can whip you across the Channel from Portsmouth to Cherbourg in 3 hours. She has been our preferred mode of transport for this crossing for a couple of years now. Food on board is a mixed affair, but I always treat myself to a vanilla yoghourt: it somehow confirms to me that the holiday has begun and is suitably soothing after the rush of packing and the hurtle to the port in time for the 7am sailing.

The weather was dull when we arrived at the house where we stay in the late afternoon of 25 July, but things stared to brighten up the next day, so that by evening on Tuesday the 26th, we were able to enjoy a leisurely walk after supper along leafy lanes in golden light. I treasure these moments, although on this occasion my back was killing me! Note to self: must get this problem dealt with once chemo is out of the way.

Stop me if I am being boring about how well the French do certain things, but I really do love the way they often do townscapes. This is Ploërmel, just a short hop up the main road from the house, although on Wednesday 27 July, we went on our bikes along one of the fab Voie Verte cycle paths that make up a national network and from which the British could learn a thing or two – oops, there I go again!
One of the matters to be attended to on this trip was upgrading the power supply to the house to 9 kilowatts, in order to ensure that heaters can be kept on the in the winter at the same time ass you boil a kettle. On Thursday 28 July, the friendly man from the electricity company came in his neat overalls and van to install a new power switch (visible at the bottom of the board attached to the wall of the spider-infested cellar). Once he had done his work we went to a local market and bought some fruit and veg and I bought olives marinated in mustard from a man who looked like an ancient Gaul.
Seen in Rennes, the capital of Brittany on Friday 29 July. The – to Anglo-Saxon eyes – unfortunately named gentleman after whom this street is called was a mayor of the city. I trust it is not also a comment on his administrative style. Oh dear, that really was a cheap shot...
On Saturday 30 July we walked the 12 kilometres around le Lac au Duc, one of the largest freshwater lakes in France, which lies just to the north west of Ploërmel. It was a brilliantly sunny day, but most of the path was mercifully in shade and beautifully wooded. Thanks (but no thanks) to the lack of a signpost at the crucial point, we went a bit astray at the mid-point of our journey, but this photo shows the point at which we finally identified the way south and back to our starting point. It made me think of the journey my family and I have been on since my diagnosis nearly a year ago and I liked the sure footing given by the wooden boards raised over the terrain, which was marshy at this point.
Much of Sunday 31 July was spent reading the garden. In the right of the shot is a pale English knee.
The lovely estuary at la Roche Bernard on the south coast of Brittany, where we on Monday 1 August we enjoyed a lunch of galettes de blé noir, Breton buckwheat pancakes with savoury fillings (washed down with a modest dose of local cider). The expectant lady on the right is having her picture taken.
Tuesday 2 August saw us cycling by the side of the Nantes-to-Brest Canal (part of Napoleon's legacy). Our destination was...
…Josselin, where this castle rises up on the bank of the canal. Here we had a picnic lunch of left-over chicken and couscous before wandering through the medieval streets of the town.
Part of La Gacilly, permanent home to the Yves Rocher perfume and toiletries business and temporary home each year to an open-air photography exhibition, whose theme this summer is forests. Some fabulous lenscraft was on display, not all of it as large as the panels visible on the side of this building. The pretty town is also home to numerous craft shops and I spent some time chatting to a man who paints miniatures on the leaves of trees, cured until they take on a texture like that of leather. Wednesday 3 August was the last sunny day before the weather broke.
Also seen in La Gacilly. Another example of what I like about the French way with trees and townscape.
The weather broke pretty comprehensively on Thursday 4 August, but the rain held off in the afternoon so that we were able to take a walk around the spectacular display of hydrangeas that adorn the south-eastern end of
le Lac au Duc.
The way the flowers on this particular plant were shading between green and blue in the momentary bright sunlight brought me to a state of brief ecstasy. It gave me hope in the continuity of life and its endless possibilities for beauty.
Back to Josselin for the last evening of our holiday on Friday 5 August. We ate some of the best steak and frites I have ever tasted, while in the square outside there was traditional music and dancing. Bagpipes, bombard (an early reed instrument, a sort if raucous oboe) and accordion accompanied dancers in a mixture of Breton costume and everyday clothes. All ages were represented in the large circle of dancers. The sense of joy and community, as well as the earthiness of the tunes – so linked to the traditional musics of our own islands – always move me to the core.
Rushing through Normandy on the way to the return boat from Cherbourg on Saturday 6 August, we happened upon this quick and easy solution to our hunger and need for a loo. Yes, I know, how could we? Also, red meat twice in two days is against current dietary guidelines, but at least the buns were wholemeal...

When my brother and I were considerably younger than we are now, our doctor father worked for a time at Hillingdon Hospital in West London. There was in the ground of the hospital a pleasantly secluded garden where we could enjoy fresh air and play ball games. Arriving there one Saturday, Dad broke with tradition by parking outside the main entrance and turning to my brother and me as we sat eagerly in the back seat of the car and announcing with his usual kind, but on this occasion somewhat mischievous, smile: "pricknicks before picnics". It took only a short while for the penny to drop and for my brother and I to understand that there was to be no fun until we had received injections for whatever we needed jabs for at that particular stage in our tender lives. Nice one, Dad. It took us quite a while to forgive him his loving subterfuge, although the afternoon did look up considerably once the medical necessities had been dealt with.

Little did I know then what a part needles would come to play in my life several decades later. No more picnics for me for a while: not until the next needlefest is over. Soon I will learn whether the blood taken from my arm some hours ago is of a suitable quality for me to present myself at UCLH for high-dose chemo tomorrow. I will let you know, whenever possible, how things are going. In the meantime, the memories of golden evenings and birdsong in Brittany remain strong and hold a healing power.