Little problems

The boys' new house

The boys have been in their new home for one week, and are already facing the problems of new homeowners. We were sat in their front living room when Annie noticed a leak from the ceiling; a slow drip of water onto their newly cleaned carpet. No longer can they simply call the landlord to report a leak and let him sort it out; now it is their responsibility. By chance, we had a plumber booked for the morning to fix our own leaking shower and noisy shower pump, so the boys asked him to look in on them after he left us.

We are trying to keep on top of the many jobs needed to keep a house in good shape. We want to redecorate our little snug, the room we set aside to keep warm in winter when the rest of the house is cold. It is furnished with two comfortable chairs with cushions and footstools, a couple of well-filled bookcases, a small table on which we can place our cups of tea or laptops while we curse the Guardian crossword, and a small second television before which we while away the evenings, usually with a detective series (currently Annika), or a light comedy such as Parahandy or an archive programme from the BBC's days of serious programme making. Annie wants to decorate one wall in delicate pink, which will certainly lift the room with a little colour. 

 For some time, I have had a cough, but nothing more than that expected with the melanoma spreading through my lung. It is hoped the radiotherapy may have reduced and slowed its progress, but of course it still sits there, irritating the delicate pleural lining of the lung to cause some pain, and sitting on the diaphragm to trigger the cough reflex. The cough has been a little more active of late, confirming its presence with a little phlegm, not yet tinged with blood; but last night I did imagine I'd seen a pale tinge of pink to its colour. It reminded my of the colour our snug will become; this morning, though, in bright daylight, all was clear. 

Cancer is not an easy word to manage, as host or partner. It does not frighten me: I have seen too many deaths to be worried by my own. The weakness in my legs and arms, or the breathlessness on walking up a slight slope, remind me the body is failing even if my mind dwells not on the fact. The tiredness can be overwhelming and makes any thoughts of death more welcome as a long and peaceful sleep, like sliding into a welcome doze in a scented garden with the sun upon my face. Red has always been my favourite colour, the bright poppies to welcome spring, and our bright red roses to delight with their so delicate scent, and gorgeous depth of colour. But the poppy is the flower of remembrance, and red the colour of a violent death. 

I am getting more forgetful by the week. I do not think it is pure dementia or an onset of Alzheimer's; nor was there any reported sign of brain secondaries. But the scan did reveal quite advanced cerebral atrophy; my brain is literally shrinking, and I am losing many of those delecate connections that hold memories and make our personalities. Annie has been getting bad nausea this week, probably consequential to her advanced liver failure. Our granddaughter Grace, who works in a pharmacy, has been kindly suggesting a number of things to help, but Annie asked my to get the ginger sweets my niece Sue bought when I once had nausea following chemotherapy. I went upstairs, but with a minor distraction I came down without them; I had completely forgotten her mission for me. 

The other day, I had bought a pack of custard doughnuts. I opened the packet, and said to Annie, "there are ony two doughnuts! Someone's opened the pack in the shop, taken two then put the pack back!" Ann replied calmly, "no, I've just taken two out and put them on the plates. Yours in in front of you." I hadn't even noticed what she was doing. This morning, I did another careless thing; I threw the dog's toy hard for him to fetch, but missed seeing the door frame I was standing in. I caught the side of my hand, pulling a slice of skin off. I certainly saw plenty of red then, before I could hold it beneath the tap and put a plaster on. I just hope my mind holds out as long as my body, or I will become a true imbecile, fit only for the knacker's yard.

Annie

 

Annie has been feeling unwell since Sunday. On Tuesday, she had a fibre-sound scan of the liver, booked since she was admitted to hospital and diagnosed with liver capsulitis. The results were posted online soon after and were disturbing: it is now reported to be Stage 4 liver failure. The hepatologist had asked many questions about possible causes for this, but none have come to light. Annie has not been a drug user or knowingly had hepatitis, and even for an obvious cause like alcohol, she was never a heavy drinker, enjoying an occasional glass of wine with a meal but not draining the bottle and keeping off spirits; indeed, Annie has not drunk anything at all for many months now. A forest of follow-up blood tests has been booked for Friday, to determine the severity and a possible cause. 

This news of severe liver failure has thrown our lives together into focus. Hitherto, being ten years older with advanced cancer, it was assumed I would die first, and Annie would be there to bear it with me. Suddenly, we face the possibility that it maybe I who does the nursing and am left. There is an episode the Scottish comedy, Still Game, where the oldies gather in the pub to lay bets on which of them will go next. It is a morbid game that Annie and I used to play when she had only her heart problems to shorten the odds. We would go through all the friends, neighbours and relatives within our generation and consider who might be first, or who might outlast us all. My dear brother Richard was always very long odds; he was so fit, lively and active we barely considered him a contender. Now the odds have shorted against my darling Annie, forcing me to consider more seriously a possible life without her. But I cannot; she fills every moment of my life, and when she is away from the house, or even just sleeping upstairs, life seems empty and frightening. We do not now have much in the way of adventures, but we do little things together; we are at the comfortable stage in a marriage where we know what each other is thinking, and what they are about to say often before the words come out. We think so alike on most things, we are as one. To lose Annie would not be to lose a good companion; it would be to lose myself and, like considering death, I cannot contemplate or imagine it.

Dare to be different

 Laetiporus sulphureus?

 Walking Byron through the park this morning, we spotted a bright yellow, orange fungus growing on the trunk of a felled oak. Naturally, curiosity compelled me to look it up; it appears to be Chicken-of-the Wood mushroom, completely edible and with the taste and texture of chicken when cooked, hence its name. As I said to a fellow dog walker who was also admiring it, I wouldn't like to eat it. By which, I meant I don't have sufficient faith in my identifying or cooking abilities to convincingly serve it on a plate to anyone. I would be more likely to end up like Erin Trudi Patterson, behind bars for taking out half my family! Surprisingly, my father used to take us mushrooming as children. We would leave early with dew on the ground and stop by some random field where he seemed to know they would be. We would pick a good number of huge things, get them home to wash and peel off the top skin, then he would cook them as part of a full English breakfast. He also foraged for other rural gifts: crab apples, cranberries, elderberries, and rose hips. He was brought up in an orphanage in London, miles from any countryside, so I have no idea where he learnt his foraging skills; but we all survived without mishaps. He was a good cook, doing unusual dishes such as roe on toast and French toast; his Bubble and Squeak has never been surpassed.

Clare was once a pleasant, quiet, quintessentially English village (or small town as they consider themselves), but has recently gone the way of so much of old England. The residents particularly attack anyone who infringes what the righteous see as their moral or aesthetic values and residents regularly post complaints of their neighbours, or pictures of cars to show minor misdemeanours. Clare residents particularly hate newcomers or people with different values to their own. The large Bell Hotel in Clare has been under financial difficulties for some while since it was sold off by Green King as unprofitable, leading to a succession of owners trying, but failing, to make a go of it. The last group were a wild but lively group who came with new ideas and promotional attempts, but the residents took against them, boycotting the pub, putting out adverse publicity, and generally making life unpleasant, until the new people were driven out (though they may not have helped their own cause by not paying the staff!) Now the 16th Century hotel sits empty again, slowly decaying with its corner chipped by passing lorries negotiating the tight bend round it.

The latest persecution is against a new shop setting up that has painted its front a bright colour, to attract notice and clients. Naturally, this has produced a massive backlash, trying to force them to repaint it a subdued pastel colour. The town did the same to an old, privately owned mid-terrace house once that was daringly painted purple. The cry goes out, "we'll end up looking like Tobermory, if this is allowed to carry on!" But what is wrong with Tobermory? It's brightly painted waterfront is known round the world and is a feature to attract tourists. Goodness knows, Clare could do with attracting a few tourists; it's character, it's shops, and the remaining pubs might have a chance of survival if the town only dared to be different.  

A silent protest

Facing Death in Rafah 2024

After a long hiatus, I have completed a picture I started last year depicting a couple in Gaza who watch the devastation unfurl around them as they fear they may be next in their family to die under the hail of bombs. This is not a covert protest in support of Palestine Action; it is an overt protest against so much mindless destruction and death at places of violence around the world. In the aftermath of the Second World War, I walked the streets of Leicester and Coventry, and later London, but saw only a spatter of bombed out houses. The devastation and waste of Gaza is worse than anything I remember or have seen, short of the pictures at Hiroshima Peace Museum depicting the final bombs of that war. Only in Hiroshima were more buildings flattened per area than Gaza, and that was with nuclear bombing. 

Today there were many arrests in London of people supporting Palestine Action, a group proscribed by the current Labour government. Most people watching the news look in horror at the mass bombing of the mostly civilian population, but following the desecration by paint of RAF bombers by protesters, even peaceful protests or holding a simple message on a sheet of paper results in arrest and possible imprisonment. Oh England, my England, what has happened to the right to peaceful protest? Since when did a ruling party block and stigmatise people objecting to mass bombing and starvation? I have not labelled my picture with words of protest; the people there speak eloquently enough without my vain words. Let us just trust that Starmer's thought police don't come knocking upon my door to arrest me for a silent protest, for in this country now, it seems even private thoughts can be offensive and be penalised! Heu, patria mea non iam est. [Alas, my country is no more!]

The boys are moving on

On Sunday, Annie was invited to meet Edwin in Bury for a shopping spree and a chat and ended up going to a Ukrainian lesbian wedding. Gay weddings are not permitted in Ukraine, so the couple seized the opportunity to hold the ceremony here while they are living in the UK while some of their relatives flew over to be with them.

Besides the wedding much has occurred in Maison Marr since last week. Edwin and Andre have finally signed and exchanged contracts for their first house; they and their dog, Morris, are to move out of Bury-St-Edmunds and into Newmarket. The boys will collect the keys tomorrow (Wednesday) and have invited us to visit the yet empty house on Thursday. As they are currently renting, they don't have to vacate their own property on the same day but will spend a week cleaning and preparing the place, with the intention of moving their furniture in the following Thursday. But not just their furniture: they have also earmarked our chesterfield, the piano, and a wardrobe to go on the van, so we spent the day looking for a new sofa and chair. Annie emptied the wardrobe and this morning I took three bags of clothes to the charity shop. By one of life's many coincidences, the boys' landlord phoned them just before they phoned him to give their notice; he is selling the house, so they have to leave anyway. He even offered them first refusal to buy the place! 

By another coincidence, a guy I have been corresponding with for some time about some papers we wrote turns out to not just be the same age as me but was also studying physics at Queen Mary College (now University) in the same three years that I was there. We each scarcely remember the other being there, but I do remember the project he had: to measure the thickness of dust on the moon using the radio telescope on the roof of the physics building by measuring infrared emissions before and during an eclipse of the moon. This was in the early 60's, before man had landed on the moon, when there was a fear that the dust layer might be so thick that the NASA lander could sink right into it. As a result of this and other work at QMC, the department was at the forefront of the moon landings and was given one of the rare samples of moon dust returned from the Apollo Eleven lander; I remember seeing it displayed in a glass case in the physics department when I returned some years later.

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.

 

A celebratory cream tea

 

Celebration Tea from Matthew and Rosie

Finally, the huge run of daily visits to Addenbrooke's is over. I was told to have someone accompany me in case of nausea or feeling faint, and a tremendous team of four helpers stepped in to share the load, all willing to sacrifice their own time to drive me in and wait with me in a dreary, windowless room bursting with too many people for the seating. Each one has, or is related to, someone with some form of cancer, so an atmosphere of gloom and introspective hangs in the air as each in their own way ponders their future.  

Matthew and Rosie sent Annie a splendid cream tea, partly for mothers' day and partly to celebrate getting through the radiotherapy. She laid it out formally to have on the dining table in the sun. Delicious!

Now the sun is moving into its summer sky, I can sit in its warmth in my favourite armchair. I'm reading The People on Platform 5, a Christmas gift from Annie. It's a light and upbeat book, and a good counterpart to the mayhem on the news, and the stream of murder mysteries we watch to idle an evening hour.  

We hear a lot about 'influencers', and how they have thousands of followers, each presumably willing to buy some product the influencer is pushing that day. I wondered about becoming an influencer myself; would the handful of people who read this blog rush to buy whatever clothes I chose to wore? No, they would not. But perhaps I can be a de-influencer. Annie buys me lovely clothing, but as soon as I don it, it seems to change in subtle ways until I always seem to be dressed in shoddy, stained, left-me-overs. I think companies should pay me not to wear their clothing or use their products, and add a bonus if I wear some rival's garb. If only I could build up a large readership for my posts, I could make a fortune as companies vie for me not to be seen in their clothing.

Radiothrapy updates

 Another week of radiotherapy is over. The days have been so similar and monotonous, varying only in the time of appointment or who ferries me in, that I haven't felt any urge to update this blog. The new procedure involves bombarding the area of skin with high-energy electrons from a small linear accelerator onto the scar on my back, where they removed the cancer from the muscles. The area is looking quite red now, like bad sunburn, so Annie is putting cream on as per recommendation. Now only three more sessions to endure.

The recommendation from Addenbrooke's is that I should be brought in by a driver, in case I feel sick or dizzy after the treatments. When it was Annie's turn to take me in, she went on to the Park 'n Ride to wait for me. Going there, a motorist followed, flashing lights and drawing up alongside her to shout through the window: "you've got a completely flat tyre!" Annie limped to the car park, but couldn't get Edwin, so phoned Andre who left work and was with her within ten minutes. He jacked up the car and removed the wheel nuts, but was unable to budge the wheel, so called to a burly Irish workman in the carpark for help. Even the two of them together couldn't shift the wheel, and they were afraid to rock or pull too violently in case the car fell off the jack. Luckily the Irish guy had a spray-type emergency inflator that blew it up sufficiently to get them to a Tyrecar in Cambridge. Edwin now arrived to pick me up, so the four of us were watching as the professionals tried to remove the wheel, but they too couldn't shift it. Finally, they took a heavy mallet and kept hammering the wheel till it finally fell with a satisfying rubber thud. We all let out a great cheer and applauded their efforts. The guy later said that VW wheels were notorious for corroding to the drum and were the worst vehicles for this.

Today was Andre's turn to take me in; an early start, leaving just after 7a.m. for 8a.m., but the poor radiotherapists start at 7a.m. so had already seen a string of patients. The NHS is clearly putting in the hours to get through their lists. Afterwards, Andre took me to ARM where he works, to show me round. It's a massive, complex campus, with multiple new buildings all belonging to ARM, and another under construction; clearly a very ambitious company that is doing well. They have several large dining areas that were deserted this early, but he generously bought me a wonderful full-English vegetarian breakfast, all freshly made and served, which made the early start well worthwhile.

Three of our close relatives are widows now: Ann's sister, Jane, my sister-in-law, Chris, and my ex-wife Nicola, whose second husband died some years after their marriage. All of them are going through a desolate time, emphasising how deep is the loss of a close partner. We know this treatment is no cure for rapidly spreading cancers like melanoma, but just hope several weeks of total disruption to our lives works sufficiently to damp it down and ultimately give us a little more time to enjoy life together. 

Our old boat

Wild Cat, aka Lewarne

We had a wonderful weekend with Ben and Kaz, completed by Edwin and Andre visiting to bring a couple of board games. An email had come unexpectedly from the new owner of our old boat, Lewarne. We had sold her in 2016 when she was renamed Wild Cat by her new owner, a great fan of Arthur Ransome. She is now berthed in Cardiff. The new owner, Jim Reeves, is a cheerful nineteen-year-old who has lived among boats all his life, and now his own Marine Service company. He mailed me a link to a video tour of our boat (Video of Wild Cat aka Lewarne), which brought back many wonderful days with friends and family cruising the Orwell and East Coast rivers. Such memories are so precious and made me revisit the old pictures we had of those days. 

Jim has added features like an electric toilet and a large screen projector TV, as well as building a double berth in the after cabin to replace the two narrow single berths, and sails her single-handed, intending to go to the Scilly Isles this summer. Lewarne is now almost 50 years old, still with most of her original woodwork; I wonder how well modern yachts will look in 50 years, even without the constant need to varnish and polish timbers. Designed for the Baltic fishing trade, she has a reassuringly thick hull with a wonderful shear that seemed to brush the most fearsome waves aside without fuss. Altogether a beautiful boat, though showing her age a little now.

We were last in Cardiff many years ago, to see an exhibition inspired by where they had filmed some of the Dr Who episodes. Jim invited us to visit and see the boat if we are ever in Cardiff, but I can't see us returning there, good though it would be to see the old boat again. I note she still has the funny patch in her foresail where it suddenly ripped while running in a good blow on the Stour; I never understood why the sail makers fitted a yellow patch! Perhaps it was their surreptitious protest because we didn't order a new sail from them.

The torment of a growing tumour

My swollen wound

Two weeks after removal of the secondary in my chest wall, it is healing well still a little swollen and sore. Next week I face a long session of R/T (radiotherapy), where they attempt to blast to bits the beast on the lung. Facing imminent death is discomforting. Though some may escape taxes, we all know we are born to die, but manage to live most of our lives as though it is of no relevance to us directly; we walk the path of existence with so many distractions we give no thought to the final destination. Now, although I enjoy many distractions still, it looms in my sight and is present in the painful twinges, my weakening limbs, increasing breathlessness, and deteriorating mind as I struggle to remember names or even words that hitherto flooded effortlessly into my brain.

Today, the oncologist at Addenbrooke's phoned again to give the results of the tissue they removed, confirming the tumour was present in the margins of the wound, and therefore still very active. They hope to try more localised beam therapy, with protons or electrons to reduce it, which sounds more like using experimental apparatus in the physics lab than standard hospital care; but Addenbrooke's is a major cancer research centre, so perhaps these treatments have just come out of the lab.

Happier Days in London

As always, it is poor Annie who suffers the raw impact and the burden of my disease, suffering all my moods but without our old distractions of visiting new places, or even going out to anyone more distant than Haverhill or Bury St Edmunds. Edwin cooked a wonderful meal last night, but other than this, we hardly go to a restaurant now, whereas we used regularly to go several times a week and always for Sunday lunch. Now, Annie prepares all our meals, ensuring I get a balanced diet designed to give maximum power to the immune system.  

Gone too are our relaxing weekends away, being pampered in hotels or even visits to the cinema or theatre, although we did enjoy one night away in London to see The Devil Wears Prada, an unexpected Christmas gift from Ed and Andre. We live in hope we may resume some activities once all the treatments are over, but at the moment it is a hope that seems to recede as quickly as the days are advancing. 

Love Actually at Addenbrooke's

Yet another hospital visit yesterday, to discuss the proposed management of my spreading cancer. At Christmas, it is traditional to watch the popular film Love Actually, with its classic scene of myriads of people meeting joyfully at the airport. The oncology waiting area was equally crowded, but without the luggage and romantic hugs of greetings. But Annie insightfully pointed out that the bonds between people as they patiently awaited their call to see the specialists was of a deeper love and carried more meaning than any fleeting reunion before a return to normal life. It was the love carried between marriage partners or lovers, a parent for a child, or a young man or woman for an ill parent through their stress of potentially terminal illness. One thing alone bound this group as we waited for another course of treatment or to discuss our progress: one person in each pair had cancer. Some were marked with surgical excisions, some with scarves covering their hair loss, or by sunken cheeks betraying a deeper cancer within their bones or blood. It made me appreciate how very blessed I am to have Annie, as she touched my hand through her suffering to give me strength and comfort.

At times like this Addenbrooke's shows its worth as a great hospital; they have had repeated multidisciplinary meetings about me before deciding to perform surgery to the more superficial mass then proceed to radiotherapy for the greater lung mass. As they explained with great emphasis, this is not curative but may improve quality of life and potential pain, at least in the short term. The lung mass lies wedged in the basement of the lung with the spleen on one side and the heart on the other, so the registrar warned me of various complications before he told me he considered their likelihood to be much less than certain, and persuaded me to sign the consent form.

Our dog Byron is lapping water in the kitchen. Oddly, each time I hear him, it sounds just like the clop-clop of horses that used to walk by the house from the paddock at the end of our road. I used to see the horses from my study, shading themselves under their tree in summer, or moving in circles on a training lead as they were broken in for riding. It was very rural and relaxing. Now the fields stand empty, for the trainer has taken a job in Newmarket, and the fields' owner has not leased them out. I used to take riding lessons when I worked in France, doing basic handling in a large barn in the evening, and then a good cross-country hack every Sunday morning which were wonderful. All my horsey terms were in French and really, I know little of horses, but a lot of country people keep horses or ponies so I thought these empty fields must be wasteful, as he could be collecting rent. However, based purely on the internet, it seems the rent from even quite large paddocks is ludicrously low, so it's probably not worth the effort of collecting it just to see it disappear again in tax. I know horse lovers must include insurance and vet bills and the cost of tack and food, but based on the cost of good grass pasture, the actual day to day running cost may be much less than a car, and miniscule compared to the costs of running a boat (this I do know from experience!). 

More medical news

I was never in the army, but even in the Air Cadets we were quickly taught how to stand to attention. Back straight, chest out, tummy in, head high and look the person straight in the eye. At my height, I was just short of six feet tall. Now my back is bent, my legs stooped, my head droops, and I am several inches short of the youth I was. But when my CAT scan X-ray results came back this morning, all was explained. It seems that, besides the obvious lung node which has grown a little larger and a new secondary in the other lung, I also have a fracture in the lumbar spine. I did not remember breaking my back, for although I do now get some backache I attributed it to "wear and tear", or osteoporosis. It seems I do, indeed, have osteoporosis and the first lumber vertebra alone has lost 25% of its former height. When added to the spinal curvature it is no wonder I am somewhat shorter; but I have the perfect excuse now whenever I am told to "stand straight".

The back was not helped yesterday when I fell out of my chair. I have a good quality office chair, solid but comfortable, with a high back and sturdy arm rests. Unfortunately, I knocked something off the table, and leaned to the side of the chair to reach it; further, and further till I nearly touched it when "bang", my centre of gravity crossed a threshold and I was on the floor, legs still in the air wrapped round the chair. Annie came rushing in thinking I had fallen down the stairs; but only my pride was bruised. Unlike poor Annie who has been nursing a black eye all week; the bruise appeared spontaneously, probably because she is on blood-thinners, but everyone assumes it must be through my abuse! 

We rose early this morning to drive through the first snows to Bury-St-Edmunds for the service at the Methodist church. I have somewhat swung away from organised religion, tending to the view that there is a spirit in all of us that wants to strive towards some hidden purpose, suppress it how we will, and organised religions of any sort serve to follow their set litanies or dogmas while ignoring the individual, independent mind. In contrast, Edwin and Andre have entered the life of their church fully: Andre now leads the church choir, and Edwin is training to be a lay preacher. In fairness, they are both very good; the choir under Andre's leadership is innovative and melodic, and this morning Edwin preached an excellent sermon. His training in drama and voice, and textual analysis, comes to the fore here; it centred on the day of Pentecost through history, which drew a number of complements from the symposium (oops...congregation) members. The vast majority are elderly, like us, although their numbers were much depleted today with the bad weather; yet coming home it was just wet as the snow and slush melt, with the usual deep puddles round Hundon where the drainage is always defective. The service is concluded with tea and biscuits in the meeting room, after which there are tables and chairs to clear away. I started to lift some chairs, but Annie leapt to my defence, emphasising that I must protect my back now, or I will end in a wheelchair. That would not be a good start to a new year, so I played the obedient husband rather than the macho man. Coming out of church, we were abused by a loud man shouting that he didn't believe in the trinity. Annie commented that, in all the years she had come out of a Catholic church, no one had ever shouted at her; now we had a miltant Unitarian objecting to the precipts of Methodism; this somewhat supported my assertion about fixed dogmas.

The back did not stop me later taking a box to a neighbour over the road; they have lived there for over five years now but somehow, she forgot and put the wrong house number on her order, so a couple of parcels were delivered to us, one some time ago and the last yesterday. I wonder, do many people forget where they live?

Confusion reigns

The familiar entrance to Addenbrooke's Hospital

I am including this picture of the entrance to Addenbrooke's Hospital to share what we are seeing just too often at the moment. The information from the hospital regarding the management of my cancer has changed rapidly like the storms of winter. In my previous post, I was told by the registrar that nothing further would be offered to me (Hope was but a timid friend -), but suddenly a spate of hospital appointments began to come through. On Saturday I was told to attend for a repeat scan the next day (Sunday) at 7pm in Ely hospital; on Tuesday I was given an appointment for 9am at Addenbrooke's for a surgical assessment; at 8:45am came a further appointment for the cardiac unit at 10am on the same morning; then I was to go for yet another blood test. I'm not sure what was found or discussed, but this morning came yet another appointment, presumably for surgery to remove the metastasis from the muscle in my back under general anaesthetic. I am now to attend the plastic surgery unit at Addenbrooke's Hospital on the 22nd of this month at 7am.

Needless to say, Annie and I find this incredibly confusing. I believe the plastic surgery consultant must have overridden the message from the registrar that "nothing further could be done", and in his wisdom has chosen to do something after all. It is not only me that is confused: we told everyone the glum news.  Now we are having to explain suddenly this change in plan. The surgeon himself had said there was only a fifty-fifty chance of surviving the op if it were done, but he looked bemused when Annie and I burst out laughing at each other and said that sounded like tossing a coin to see who lives or dies. I don't think many people laugh in his oncology clinics, where we more commonly see many oldies struggling on Zimmer frames or being pushed by a long-suffering relative, or unfortunate young women in head scarves to hide their hair loss, or cachectic children wheeled by distraught parents from the immunotherapy wards. No, the oncology clinics are not generally places of mirth but we feel that laughter, in the face of such imminent, potentially catastrophic changes, is the only weapon we hold to defend ourselves to defeat morbid speculation.