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.

The Funeral

Richard

Monday saw a large group of family and friends coming together at Canley Crematorium in Coventry for the funeral of my brother, Richard. Funerals can be times for great sadness as we loudly weep for the one we have lost, or they may occasionally be raucous with cheering and laughter as people celebrate a great life. The funeral for Richard was quiet, dignified, almost solemn, as was the man. A complete contrast to me, he lived a quiet life, without great drama, and was spoken of as a peacemaker. His memorial too was quiet and pensive, and led to reflecting on how he had touched our lives rather than how he had changed the world, though he did have fame in entering the Guinesss Book of Records for visiting all the Anglican cathedrals in the UK and Northern Ireland. On the coffin, a large, framed photo showed him laughing, yet the Richard I remember rarely roared with laughter; rather, he had a quiet smile that reassured, and that was the brother I remember. With any death, we remember all the other people we have lost over the years. The greatest sadness is how little we tell the people we love what they mean to us while they are still with us; only with their loss do we reflect more deeply what lies behind the love, and how we ought to tell it while we have them with us. It would have meant so much to them. 

A good number came to the wake, for Richard was popular and well liked. It was held in a function room with a number of large, round tables but, as so often happens, our family divided into factions, the result of remarriage and the role of the step-parent. Annie ended up at one table with her immediate family, Edwin and Andre, while I was at a separate table with Peter, the children of my first marriage and their spouses and two of their children. Chris, now the new widow, was devastated and seemed to move in a trance, though she invited us out her for a coffee where we met Peter and his daughter, Laita, then back to her house for the afternoon. Her solicitor phoned while we were there, a reminder of the complexity that can follow a death; she wanted to talk of getting probate, the re-registration of the deeds of the house, and reassignment of powers of attorney. It was too much for me and Annie to take in, let alone poor Chris who was dutifully taking notes in the midst of her confusion and grief. 

Peter is a heavy smoker and drinker, five years younger than me, yet looks older but remains fit and healthy. He left the next day for Egypt where he likes to spend the long winter. He travels light with just a carrier bag containing a T-shirt, sandals, and underwear. Living is so cheap there he saves money living near a marina on the Red Sea, and buys anything he needs from the bazaars. He has always done what he wanted in life answering to no one, a complete contrast to Richard whose duty to his family and work was exemplary.

Annie does her best to give me a healthy diet and keep me going. She cooked a lovely piece of fish last night, but I had to take a knife to cut through the thick skin and found it difficult to chew, blaming my missing teeth.  As usual, it was totally my fault. I then noticed I had cut through the foil backing paper and was trying to chew that!

Naught for your comfort...

Living with cancer, the comments I received tended to wash over me, and I never thought too deeply about them. But with Richard's death, the internet is aflood with inane words of sympathy and encouragement, and suddenly they have swum into focus. The sort of comments we see are: Be positive! Oh I am, positive - positive I am going to die; and a favourite, more to Annie and me than for Richard's death, Keep making memories! Again, we do; we have multiple hospital visits and blood tests to look back on, for Annie always comes along to support me, or less frequently I have accompanied her for to her cardiac clinics.

Other comments are, You are very brave, as though I have much choice; perhaps the alternative might be to take to my bed and moan, Pity me, the wife and the wains, in the words of Annie's Glaswegian father. I am fortunate that there is not much pain with the cancer at the moment. and I am still mobile and independent, so it's easy to "be brave", but I know that could change in an instant. Believe me, if I start to get uncontrolled pain, the world will see little bravery in this soldier. I know what it feels like, is another remark gets under Annie's skin: "No you don't," is the response, unless you too have had seven years of being told your husband is living under a death cloud, yet somehow he is still here; we can make no long-term plans, or hopes for much of a future together. Another little hiccup, is a more true appraisal, but We are here for you! gets the rejoinder, "Yes, but you're 300 miles away!" 

Regular phrases that pop up are: It's not a good day; It's not the end of the line; No one knows when the end will come; Make every day count; We are so proud of you; There is always hope. Though well intentioned, these trite comments do not really bring comfort, except to the people making them, for there is little people can say who have not lived through it, who have not experienced the night-time dreams of lonely despair. This remains well suppressed in the day, when I live a cheerful everyday existence, but in the dark night of my deep being does this dread emerge; of treading a barren path through empty hills, or of inhabiting a large, once glorious, house whose walls are cracking and falling away, a house that is becoming a ruin even while it is occupied; or tracking through a cold, bare mountain pass on a road to nowhere. Know these dreams, and perhaps then you can truly say, I know your pain. For, in the words of Chesterton, 

I tell you naught for your comfort,
Yea, naught for your desire,
Save that the sky grows darker yet
And the sea rises higher.

I have not chosen hymns; I suppose my conscious being doesn't like to face the inevitable end, but they will be expected. I like the opening to The St Matthew Passion, "Come, daughters of Zion, and weep!" More emotionally, I always feel a deep empathy to Berlioz Les nuits d'été, with their message of hope and love, finally turning to despair and inevitable loss in what is surely some of the most melancholic poetry written, yet set to incredible music that stirs the heart. For anyone looking for morbid songs, I cannot recommend them enough, with verses such as:

My beautiful friend is dead,

I shall weep always;

Under the tomb she has taken

My soul and my love.

To Heaven, without waiting for me,

She has returned;

The angel who took her

Did not want to take me.

How bitter is my fate!

Ah! Without love to sail on the sea!

Annie at least has firmly stated to Edwin she doesn't want The Lord is My Shepherd at her funeral, or she will come back to haunt him. Edwin's response was, "In that case, I will play it, so I can see you again."