A visit to Dr Doom

 Dr. Doom is a severe, grey haired lady in charge of the oncology department. Her job is not always rewarding; she is dealing with people of all ages with advanced cancers, many of them young with families, and for every patient who appears to be in good remission, there must be many more she has to break bad new to. A box of tissues is never far from her. I suspect only the team in paediatric oncology have a worse job than hers.

We first met her when she told Annie and me that I had less than a year to live and could offer no further treatments, therefore they wouldn't be doing more scans. At that point, they handed me over to the MacMillan team who visited us at home, left their number and said to ring them if we needed them. That was three years ago. 

Nearly one year ago, another consultant said I should have a follow up scan. This revealed spreading cancer in the right lung, other small nodules in the left lung and liver, and a new metastasis in the deep muscles of the back. They agreed to arrange further radiotherapy to the lung, and excision and radiotherapy to the back which was done earlier this year. Three weeks ago, I had a further post-treatment scan, and yesterday we returned to Addenbrooke's for the follow-up discussion. The nurse who came out for us said we would be seeing Dr. Doom: Annie and I looked at each other and rolled our eyes.

She was still her sombre self, although conceded I had "done well", and the melanoma had remained static or even shrunk a little in the lung and disappeared from the back muscles. Nevertheless, she emphasised again there was no advantage in further scans as no further treatment could be offered and, indeed, she wondered how I had obtained another scan. We had been fully prepared for just this message, so were not too downhearted. 

We had to admit Dr Doom was very efficient: there was zero wait to get in to see her despite running a busy unit, and she had already posted her summary letter online before we got home. We noted with smiles that she stated I was happy with her decisions given the limited future options and wished me all the best for the future. The letter sounded like it had been written by a HR person saying, "we agreed you have no further prospects with this company, but good luck with your future career." But in fairness to her, I don't really feel strong enough for further surgery or radiotherapy anyway, so she is correct in her harsh assessment. Also, she did end by saying her door was always open, and I can contact the team in the future if I think they can be of help. The nurse attending summed it up by slipping me a card as we left; it had the number for the MacMillan team.

Edwin wrote a bleak poem back in January when the melanoma was noted to be spreading; I include it now to complete the atmosphere of gloom, before finally moving on to more cheerful talk next blog.

Desolation

My father is dying;
And everything is worse now.
Fatherly wisdom
Now gasped through oxygen masks
And a future of soiled bed linen.
We know what the future holds,
We need no sorcerer’s ball,
To see the pitiful ending of it all.
Howls in the night,
Awaiting sister morphine’s dripping embrace.
The great physicist’s mind
Reduced to cancerous cells.
Junior doctors telling that there
is no more to be done.
‘Pick a door; any door’,
The registrar pronounces,
three doors to choose from,
But there is no prize car waiting
only the knowing of things to come.
Decline and desolation.
All is bleak.
Hope is gone.
And fatherly affection
Replaced by cursed affliction.
The storms rage their howling, desolate ban,
As cancer ravages a once proud man.

Edwin Marr

The Pigeon

The Pigeon Dealer

In the far east, pigeon racing is a popular sport with large bets placed on each race, and a good pigeon is valuable. The picture is included to illustrate the poem and reflect the pigeon as a model of life; a simple nature, versus the greed and destructive qualities of the dealer.

I have always tried to shrug off problems, to present a cheerful, coping face to the world. Perhaps it is an attitude of war babies, the "stiff upper lip", the never complain generation. But now, living with a terminal cancer is having some effect on my attitude to life. Normally when asked how I am, I simply replied, "not too bad...", but a couple of times recently I realised I'd suddenly confessed to people who otherwise would not know, "OK, except for the terminal cancer." Perhaps it is the rogue within, wanting to see their expression, or perhaps it is a more vulnerable me, finally facing up to the reality of an inevitable death or seeking a sympathetic response.

This even appeared in a recent dream; I was a young houseman again, doing a ward round with the professor. Although amazed by the range and depth of modern tests, I was still giving a reasonable account of each case based on clinical assessment, as we used to. Then an eighty-two-year-old man was admitted; this was clearly me, although I was still the young doctor admitting him. I gave a single diagnosis just from a glance, even without an examination: "he will have bronchopneumonia. He's over eighty, we don't treat him." 

Waking in the morning, I remembered the vivid dream as I looked out of my window to see a bedraggled pigeon on the roof opposite, leading to this mournful poem. But rest assured, dear reader, I'm not usually in so sombre a mood.

The Pigeon

Astride the ridge across the way
A pigeon squats in mournful grey;
His sheen is dull, his plumage bleak,
No seeds of corn adorn his beak,

While from his wing, like flag forlorn,
A feather hangs, defeat to mourn.
He cannot smooth this hurt away
But pecks it vainly through the day.

He does not strut but slinks along;
No coos provoke his answering song;
No more to soar among his kin
With swoops of joy upon the wing.

Like him, I squat upon my chair,
My features drawn, my lank hair spare,
Those wild conjectures - once to flout -
Now poke my pain with stabs of doubt.

And all I’ve strived and strutted for
Is lost, with hope, to bear no more.
With pain intense the hurt-strikes crack,
Each memory lashed upon my back.

I too can only limp along,
No more to strive with cheery song
But curl into a rueful ball ─
Awaiting death to finish all.

John Herbert Marr

The Phantom Shoe Stealer

The Missing Shoe

 Returning home after lunch with friends, I placed my shoes on the rack then noticed one of my other shoes was missing. Ever since Sam built our purpose-designed shoe rack, we have meticulously kept the shoes neatly arranged, rather than piled higgledy-piggledy, so I noticed the gap immediately.

I know I wore the blue pair this morning taking the dog for a walk and replaced them on the shelf as I got back to put on my slippers. I am even certain they were there as a pair when I took the blue and white lace-ups to go out for dinner. But coming back I am faced with an empty gap. Neither Annie nor I can logically deduce where it has gone. We have diligently searched every room in the house. I certainly don't remember hobbling round in one shoe at any stage, or in bare socks; indeed, it is a cliche that single socks often go missing, but how often do we complain of a missing shoe? The last time was years ago in Lyme Regis, when we walked along the foot of the Jurassic Coast and Annie lost one shoe in the deep mud which sucked it off and swallowed it. But we knew where it was - only that we couldn't retrieve it, so she hobbled into a gimmicky sea-front store to buy a plastic pair of sandals for the walk back to the car.

No, this disappearance is on a different scale. I considered the possibility of a one-legged burglar, but in that case why not steal all the right shoes? Annie reminded me that we had had one visitor before we went out: the Ocado delivery man, who carried the bags into the house; but he definitely had two legs. Perhaps he had a one-legged brother who was short of a shoe? Unlikely, plus I escorted him out through the door without spotting a secreted shoe in his pocket. Ann thinks it may have been carried out mixed with rubbish, but the bins were emptied this morning so I cannot check that theory. No, much though I don't believe in the occult, it seems the only explanation now is a shoe-stealing poltergeist. I shall watch the other pairs very carefully. 

On the kindness of Londoners

The new V&A East Storehouse

For Ann's birthday last month, Edwin and Andre had treated us to tickets to the new production of Evita at the London Palladium, which we saw on Friday. The weekend coincided with the end of Andre's parents tour of Italy and Switzerland and a week staying in Bury St Edmund's (The Brazilians come to Europe), so we came up in two cars. 

We always park in the Westfield shopping centre at Stratford, and Edwin was keen to see the new V&A extension gallery in the new warehouse complex just outside the centre. He parked and walked back in a weltering 30+degrees of sun having thoughtfully dropped us at the door for a coffee. The exhibition is an eclectic mixture of the world's odds and ends, of which the V&A has over two million items, mostly stored in basements and off-site; so this was a good example of what to do with undisplayed stock which most museums have in abundance. The objects were stacked for view on great girdered shelving reminiscent of garage shelving, most still mounted and strapped to palettes for ease of transport.

Enjoying London Vegan Cuisine

One thing we have noticed about London recently is how polite and helpful young people seem to be. This started at the warehouse museum, where all bags must be locked away before admission. I was fumbling with the code lock when an attendant kindly stepped up to help, holding down a small code key while I entered an incorrect code I would never remember - but she simply wrote the locker number and the true code on a slip of paper and handed it to me with a smile. Later, on the Elizabeth line, a young man stood to offer me his seat, even though there were many seats free to either side. Generally, it is reported that the young are resentful at the privilages of we oldies, forgetting how little we too had at their age, and how hard we worked to get what we have, and certainly in supermarkets we notice the impatience of some as we oldies fumble with our cards or packing. But Annie thinks the politeness in London is linked to the high influx of newcomers who still hold a modicum of respect for age. 

We finally met up at a crowded vegan restaurant in Soho for a delicious mix of delicacies, then on to the theatre. There were long queues waiting to go through a couple of entrances, but seeing me with my stick, another young man fetched me from the queue and took Annie and I weaving through the queues to a side door which he opened with his pass, then ushered us to a lift to avoid the stairs. At the top, another attendant met us to usher us to our seats, even waiting for us while Annie went to the toilet.

The performance is amazingly innovative, especially in using live multimedia projection of Rachel Zegler's balcony performance singing Don't Cry for me, Argentina, sung on the outside balcony to the inevitable London crowd but screened to us on stage. Unfortunately, I was my usual ignorant self, not having known any of this, so I thought for some reason it must all have been pre-recorded rather than live external camera work, so the wonderful innovation was a little wasted on me. Everyone else seemed to know though, so I couldn't understand why the audience went so wild with applause for a filmed sequence! Only afterwards did Edwin explain what had been going on. Not withstanding my ignorance, it was a brilliant show and thoroughly deserving of its plaudits.

Saturday had us enjoying one of Annie's speciality cream teas, a special English treat for the Brazilian visitors, before the boys took them back to Heathrow on Sunday, via an afternoon at Kew Gardens, unfortunately in the rain as the hot spell has now broken.

The Brazilians come to Britain

Up a Swiss mountain

Edwin and Andre have been touring Italy and Switzerland with Andre's family, using the flexible Euro railcard for unlimited travel. One highlight was ascending to over 12,000 feet by a series of cable cars, where breathing is difficult, and Edwin had to buy a thick jersey against the cold, having only packed for an Italian sun. Apparently, I am to inherit it on their return - Edwin does not routinely wear jerseys.

I had agreed to pick them all up from City Airport on their return. At 6:30pm, when due to leave, we discovered their BA flight was delayed by ninety minutes, so I left about 8:00pm before they took off, as their flight time would be less than my drive time. Just reaching London at the end of the M11, Annie phoned. The flight had been delayed by another hour of more, so she advised me to turn back and wait at a roadside cafe over a cup of coffee. It being nearly ten o'clock on a Sunday night, most places were already shut, so I went back to Stansted service station. Everywhere there was close to shutting too, but I could get a KitKat and a large coffee from a Costa machine. All the flight information proclaimed the flight would still be landing at City; but City Airport has a 10pm curfew and shuts to all flights from 10:00pm.

I could watch the flight as it turned over the Thames estuary towards City, but it then did an abrupt ninety degree turn north; and Annie finally tracked it as diverted to Stansted, rather than Gatwick or God-knows where. Finishing my coffee, I drove into the short-stay at Stansted. Even at eleven pm, the arrivals hall was packed, for it is the hub of Ryanair, and this is the holiday season. A flight was landing every five or ten minutes, with crowds of dreary-eyed people, still in sun hats and fancy shirts, pouring through the gate - though all with minimal baggage, this being Ryanair: much of it looked no larger than an overnight bag. 

Intermixed were other groups diverted from Southend, where a small plane had crashed earlier and closed the airport. An hour later, after clearing immigration, the baggage handlers found a free belt for the BA flight, and a few smarter-looking and well-dressed folk began to trickle through, many with the full BA luggage allowance, marking them our from the tourists. Although Edwin knew and Annie had discovered the City curfew, the passengers hadn't been told until they were on board and now looked totally lost and confused. Even one of the flight attendents told her friend: "I don't even know where Stansted is!" British Airways clearly consider such airports beneath its dignity.

Finally, the boys came through with Elsio and Socorra, Andre's parents, desperately tired looking with their substantial cases, and eager to get a cup of coffee, for here everything was open 24 hours including Smiths and Boots, to cater for the hungry arrivals and we who wait for them, seemingly through the whole night. We drove back in relative silence; I dropped them at the boys' door to finally get home at 1:30am. I just wish them a good week here with Andre to compensate for so terrible a journey.

A week of ceremony and sadness

Andre takes the Oath of Allegiance

 This week we were invited to Bury-St-Edmunds registrar office to witness Andre take the oath of allegiance to the Crown and make a pledge of loyalty to the United Kingdom. Andre had booked a private ceremony so a group of us could attend, including several of his Brazillian friends; if it had been a group event, there are so many present each person can only bring one guest.

The ceremony followed six years of living and working in Britain, completing his "Life in the UK" test, demonstrating English language proficiency, and being considered "of good character". This is all more than most of us can achieve; I certainly couldn't answer many questions from the "Life in the UK" test - such as "When is St David's Day?"; "What percentage of the UK population lives in Northern Ireland - 1, 3, 5 or 7 per cent?"

But Andre did answer them, and has excellent English skills, while his knowledge of our history is much greater than mine. It was a moving ceremony, much more subtle than I had been led to expect, with a little history of Suffolk and British values, and the joys of living in Suffolk. The ceremony welcomed him into the community and celebrated his commitment to upholding British values. We adjourned afterwards to the Angel Hotel, where we had booked a long table and an early meal.

On Thursday, keeping a promise to my sister-im-law, we were in Coventry to meet up and remember Richard. It was a difficult meeting, for Richard's presence is in every room. Even the birds outside reminded us that he would have identified them, while we struggled to think what they were. On the wall, their anniversary clock had stopped, with sharp silence in our pauses, whereas Richard never allowed it to wind down, with a comforting tick and chime to fill the background to conversation.

We met Peter for a meal at Da Vinci's, surely one of the best restaurants for service, cuisine and wonderful cooking, beating many Michelin-starred restaurants for my money.

The smell of leaked fuel oil still permeates the house, even with the kitchen closed off and the windows open. I wrote an email of complaint, and they sent another engineer to deal with it, this time carrying an ozone generator, which he assured us would react with the bad fumes and cleanse the air. On the downside, we had to seal off the kitchen and vacate the house, so we decamped to Edwin and Andre's for the morning. They kindly took us for a mid-morning brunch, then left me to read as Andre took the dogs for a five-mile walk, and Edwin walked Annie to town along the river path and through Abbey Gardens. The smell is certainly reduced, so hopefully will dissipate completely before much longer.

A pungently difficult week

We had one highlight at the start of the week: attending the Apex theatre to hear the Cathedral Bach choir present Bach's St Mark's Passion. A piece I had not heard before, although referencing it once in the play I wrote about Bach's life. I hold to this beautiful music to remind me that we must not despair even under the blackest sky. For it has not been an easy week. 

On Wednesday, I had follow-up telephone calls from the oncologists and radiotherapists at Addenbrooke's to ask how I was getting on. I told them of my immeasurable tiredness: or immeasurable at least in terms of hard numbers but easily counted in the hours I seem to spend slumped in the chair, a blanket about my knees and pillows to my back. Both teams commented that "this is completely normal after intense radiotherapy", and reassured that it will improve in a few weeks. To recuperate in idleness would not be difficult of itself, though I am having to watch Annie undertake more and more of the 'little jobs' I would normally do in my stride - walking the dog, bringing the bins in, even a bit of the cooking or going out for a meal occasionally to ease the burden of housework. Now I squat like a dead lump, useless and of little value. 

Andre has been granted his citizenship papers, and has arranged for the ceremony next week, where he must swear allegiance to the King. We are invited along to support him, and look forward to witnessing a unique ceremony. Although even here I have let Annie down, for I had offered to take her to choose a new dress but have felt too tired and worn to even get dressed, let alone drive to the Freeport shopping centre.

To crown a bad week, we had the boiler serviced on Wednesday. For some reason, the serviceman decided to fit a new hose and had to bleed the system. He warned that it might smell for an hour or two, but at six p.m. the smell was increasing and permeating the house, and I noted oil seeping from beneath the boiler. Taking the front off revealed a deep puddle of oil in the drip tray beneath the new pipe which was clearly continuing to leak down the side of the boiler and pool beneath it. We got the emergency plumber out who, in fairness, did arrive quickly and retighten the joints. He did his best to mop up the spill, but there must be a puddle remaining beneath the boiler, for even with windows open and the extractor fan full on, the nauseating smell permeates the whole house. Each day since I wake in the night with the taste of diesel oil in my nose, on my tongue, my throat, my lungs and in my stomach. It must have also seeped through to my brain, leaving me dizzy and disorientated, although that may just be me anyway at the present time.

The boilerman came back with a spray he claimed would neutralise the smell, but it doesn't.  Annie and I are now trapped in a world where we cannot imagine what clean, fresh air must be like. I shall never again take for granted the beauty of a simple atmosphere without diesel.