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.