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." 

Putting up the tree

Britain has been battered by a series of storms, the latest of which hit yesterday with winds of 90+ miles per hour when it struck the west coast of Wales, but it seems a poor thing when we read of the hurricanes experienced abroad with winds of over 150. Certainly, walking between squalls in Clare Park yesterday it seemed little more than a bit breezy; my hat didn't blow off, and it wasn't even raining. 

While in Clare, I picked up the paper from outside the Co-Op and was about to go in to pay when a loose dog ran in front of me. I looked around wondering where it had come from, then realised it was my dog. For some mysterious reason the boot of the car had opened, so naturally Byron jumped out and ran up to me. Lucky he is such a good dog, or he might have run off in the traffic. He walked at heel back to the car, when I noticed I still had the paper in my hand. Luckily, I was not stopped for shoplifting as well as having a dog wandering the roads off his leash. The boot does not usually open itself, but I did once drive home with the boot open and both dogs in the back. Happily, when I realised, they were just sitting there looking bemused and wondering just what idiot they had for a master. 

Our Tree

After last weeks dispirited blog when they oncologists told me nothing more could be done (Hope was but a timid friend), I feel a more cheerful again. I do not know how long is left to me, and we did not ask, for last time they had said only twelve months, but I am still here two and a half years later, so I shall press on with life as though, as in childhood, we have for ever and will never die. I can't say I stride onward, for like all of us of a certain age, I have many little aches that pop up uninvited in unexpected places, but I will continue to limp forward and get on with what I may. Yesterday, in a spirit of festivity and hope, we put up our modest Christmas decorations. We only have a miniature tree these days that sits atop the bureau, but we are going to look for some suitable windfall small branches to make a display that Ann sprays with snow and glitter to complete the display. Not that many will see it; for even Mary-Anne and the girls will not come round on Christmas Day, as Mae will be covering Christmas dinner in the pub where she works part-time. She gets double pay at Christmas, as well as good tips, so is looking forward to a boost in her income.

Hope was but a timid friend -

Brandy at The Rose

The news yesterday was bleak. A junior registrar was tasked with telling us the two tumours were inoperable and nothing more could be done. He did his job professionally without emotion, with nothing in his voice or look to suggest sympathy or loss; unlike the maternity unit where a box of tissues was at hand when the news of Annie's miscarriage was given, we left dry eyed to take in the news of certain death, and walked out in silence. We stopped at The Rose in Cambridge on the way home, for drinks and a Thai meal, and let the future sink in. The barman greeted us, saying "I've only just come out of Addenbrooke's", and went into great detail about the complications of his hip replacement, requiring a second batch of cement after they'd reached the bone, and breaking the leg to lengthen it so he wouldn't walk with a tilt. I refrained from trumping his story by relating mine, by telling him I too had just come out of hospital, but they could do nothing for terminal cancer. The worst thing for us both is not the inevitability of the ending, which we have had to live with for seven years now, but the removal of hope, so ably summarised by Emily Brontë:

Hope - whose whisper would have given
Balm to all that frenzied pain -
Stretched her wings and soared to heaven;
Went- and ne'er returned again!

Many commentators seem to consider Emily's poem reflects a general loss of hope in the Victorian era. I disagree with this assessment; I believe her poetry to be deeply personal, and always to reflect Emily's own moods or beliefs, and I suggest this poem too must reflect a period when she felt deeply alone, with little to live for. Certainly it reads deeply personal to me: hope has always brought balm, but the message from the junior doctor underlines that she, hope, has finally fled, ne'er to return again! 

The registrar had explained our three options: "first, with the cancer now spread to two sites, one large and difficult to access without removing much of the lung, we do not recommend surgery. Second, we can reserve radiotherapy as an option to treat pain if they start to be troublesome or ulcerate. The third is to just leave it alone, and that is what we have to recommend in your case."

Without hope, suddenly the future has darkened, its light extinguished in a few words. The only uncertainty now is time, but that is the same position for every one of us, not knowing how long we've got. But it has changed my outlook in an instant. Yesterday, I was pontificating about world leaders, Trump and Borris; today, none of that matters. The world will roll on. Macron's government collapsing? European unity in disarray? Russia may bomb us all or cut all the undersea data links? Starmer continuing as a piss-artist? Miliband continuing to gurn his way into the Guiness Book of Records as Britain's silliest clown? All this will continue without my bemused commentary. 

Without hope, we are truly alone, and life suddenly seems very empty. Belief in God may give hope for a life to come, but it is the life here and now I have always enjoyed, and always lived with hope of more to come. Without hope, we wonder if any plans are worth making, for without hope, all is dark with nothing to illumine things to come, and we may only await external events beyond our control.