Time wasting at Addenbrookes Hospital

Yesterday, Dr Martin the oncologist at WSH, explained the pros and cons of chemotherapy, with sufficient emphasis on the cons that I had no hesitation in declining his kind offer. I told him I would opt for radiotherapy as the definitive treatment. As the oncologist in charge, he arranges the radiotherapy, but rather than doing so he encouraged me to keep the appointment at Addenbrookes to discuss it there.

Addenbrookes is 90 minutes away in heavy Cambridge traffic, so we left at 10:30 for my 12:00 appointment. The carpark was full, so we queued until enough cars had left for us to enter and find a vacant hole. Fortunately, traffic had been light so we arrived on the ward by 11:40, to find the clinics were running and hour late. Finally we were called in to see just the registrar, as Mr Turner was away. He asked if radiotherapy had been explained, and when I said I'd read the leaflet, he said there was nothing he could add to that. I only had two questions: when would it start and finish, and would I be able to go on the holiday we've booked for my birthday and New Year at the end of December. He couldn't answer either of them, and said the radiologist would have to answer these, and he'd write back to Dr Martin to make a new appointment to discuss it all.

The whole thing lasted ten minutes, and was a complete waste of time – I have lost a whole day of my life to be told nothing, and that could have been sorted yesterday. The only good thing was meeting Arthur, a volunteer in the oncology clinic, who found me a leaflet on getting holiday insurance (if we do manage to go!). He also gave me a leaflet about coming to Maggie's, a cancer drop-in centre, and a support group called Fight Bladder Cancer. It contained the line, "we know EXACTLY what you are going through...like most people, panic and fear will be a huge part of what you are experiencing." No, I am not experiencing panic or fear, and have not done so yet. What I AM experiencing is bloody anger and frustration at the lack of joined up thinking between WSH and Addenbrookes.

Radiotherapy already demands that I shall attend Addenbrookes five days a week for four weeks, plus the days round it for checkups and planning. The days left are too few to be wasted like this one  – I am already counting each one as precious, to be treasured. I don't want to spend 4–5 hours for a ten minute talk by a junior doctor to tell me nothing.

Benefits of Being Trolled

In contrast to many of my generation, through both wisdom and experience I have swung from right to left in outlook. In youth, I joined the Young Conservatives and derided the CND brigade for wanting to dismantle our most powerful defenses. Now I have rejoined Labour, and would fight for nuclear disarmament, were the youth of today marching for such issues.

Hiroshima Flag at Half Mast

In my youth I entered foolish arguments about Greenham Common women asking men to "make the sandwiches", not seeing then the wider issues of the rights of women or minorities, or even the importance of nuclear disarmament. Only now that I've visited Hiroshima, and walked in the silent contemplative Memorial Peace Garden, have I been given this Damascene vision: that whole continents such as Africa, South America and Australia/New Zealand can unite to reduce the threat of nuclear destruction. The Nuclear Non-Proliferation Treaty (NNPT) has 189 States declaring. It would be a wonderful step if France and Britain joined too, to make Europe a non-proliferation zone.  Perhaps it is too late for me to act. Death bed repentance is never very admirable, and I can't claim any virtuous result from my enlightenment.

Only through directly witnessing the distress of discriminated groups have I accepted that there is a problem, and that direct action must be taken. We hear of trolls and online abuse, of vituperate comments posted about seemingly innocent remarks, defaming the person rather than disputing the idea, and threatening violent ends to prove their arguments. But the cruelest cut of all is to be ignored. Cut off from social contact or exchange, even at the level of vile criticism, is to be as though one does not exist. In my youth, I posted as "ΔWise", signing anonymously my excruciating comments, and writing poor sketches that were pulled apart. My controversial ideas were attacked in many ways, and I delighted in the battles. Now, I can only look back at the reams of poems, the books, the plays I have written, and sigh. I would have enjoyed returning the stones of the critics and fighting more battles, but it never happened. Probably they achieved what they merited. They received no criticism, no abuse, no rebuttal. They were simply ignored, as this plea for Britain and France to join the NNPT will be ignored.  For people suffering the attention of trolls for their beliefs, their faith or their sexuality, remember: you are winning attention to your cause. To be ignored is the cruelest cut of all.

If you have visited the Hiroshima Peace Gardens, please add your thoughts...

Kent Characters

Joyce at 90

Continuing the theme of Kent Characters, we visited Ann's cousin Joyce in Deal yesterday. She is 90, but fit enough to talk for England, and still walks to the supermarkets for food and to the pub for a drink. She has smoked all her life, and knows all the spots outside pubs and hotels where she can still puff. She defends this by relating friends she's known who were told they must stop and were dead within a few weeks. She is thin and fully mobile, and fitter and less breathless than me. She reminds me less of a Dickensian character than of one of Alan Bennett's Talking Heads but with a London accent, for she never ceases talking about her relatives, other residents, the people she meets in the shops, or her past, in a jumbled montage of reminiscences, laced with advice and humour that has us constantly laughing. I would need a tape recorder to transcribe it, and can see how Dickens had a clear advantage in recording his lives by using the shorthand he'd learnt as a journalist.

Joyce has paid for her funeral, and made all the arrangements, because she doesn't want her children squabbling over who chose what hymn or reading. She has already asked them to choose what they want from her estate, and written it down so they can't start bickering over her possessions when  she's gone. She married at 18 and has been widowed for two years. Only now does she know freedom, and is the happiest she has been.

Today was my consultation with the oncologist at the Macmillan Unit in West Suffolk. This waiting room is so different from urology, with its rows of old men with bladder and prostate problems. Here are rows of younger people, half women, many with head coverings – hats, knitted caps, bandannas, scarves – or wigs of various colours and lengths. To one side sat a younger man, a prisoner handcuffed between two guards from Highpoint top security prison, awaiting transport back to the cells. A good proportion of the chemo population are children with leukaemia, though there were none in this room; probably they have a time slot separate from the adults.

Dr Martin carefully explained the pros and cons of chemo, reading out an arm's length of side effects. My face grew longer as the list grew. Ann and Edwin could hardly stop giggling as they watched me. One side effect would be thinning of the hair. Though young, Dr Martin had a gaunt face and very sparse hair, making me wonder if he too had had chemotherapy. Then he added, the treatment would run right through Christmas, and I'd have to be admitted to hospital immediately if I ran a temperature. Even if I finished the complete course the pros were just a tiny improvement in my overall chances. As I always get a chest infection each winter I declined it.

In the cafe afterwards, a foreign lady in the queue asked what soup it was. "Soup’s all gone," said the woman behind the counter. "Oh, soupsalgone- that’s my favourite!" said the woman. We left quietly for the sane little world of Hundon.

Bleak House II

The day continued with the weird sayings of Lee of Bleak House. He continues to rush round without a pause, taking orders for breakfast as quickly as possible, but he has no working memory, and without a written memo he kept forgetting and mixing up everyone's orders, coming back half a dozen times to remind himself of what we wanted, then bringing the wrong food in. One lady said we should just order everything, and leave what we don't want. Another guest said she didn't like to see food wasted, but the first said, with so many wrong orders, it was all being wasted anyway. Another man said he was going to buy Lee a notebook, but thought he'd forget to use it or lose it.

Yesterday, I'd said to Ann how fantastic Dickens' must have been to imagine such a vast range of iconic characters. The rest of us just write our own dull stories to greater or lesser acclaim, but he generated his stories from the wild world of his fantasy, and that made him unique. But today, I realised why he loved Kent. This county is filled with weird characters that make Lee seem tame.

The Tartar Frigate has a landlady who shouts loudly at her visitors: "Sit down! What do you want! We don't have it!" But when she brings the plates, she talks softly to them as she sets them down, "There, my beauty, you sit here," and strokes them lovingly. The hotel owner is as crooked as Bill Sykes.  He runs a jewellers in which he passed off imitation costume jewellery as solid gold, but was discovered when it turned a customer's fingers green. He sold a fake Rolex watch to someone who'd won the lottery, and that was discovered when they went swimming and the watch leaked. He seems to have got away with these crimes, but has also been charged with more violent crimes, and was found not-guilty on a murder charge. So possibly, Dickens' had no more imagination than the rest of us. All he did was describe everyday life as he walked the streets of Kent.

Paddy Ashdown joins the Bladder Cancer Brigade

I mentioned in an earlier blog that there is a dearth of famous people with bladder cancer. Now Paddy Ashdown, the ex-leader of the Lib-Dems,  has joined the ranks of the BCB. I extend my sincere sympathies, for it is not an easy group to join, and he will have a rough path to follow. He used to have a nickname, "Paddy Pantsdown", for reasons that might be libelous to state. Now we can reprise the nickname: he will be Paddy Pantsdown anew, as I can state from experience!

Bleak House

We are staying at Bleak House in Broadstairs, after stopping via the Leather Bottle at Cobham – an ancient inn also used by Dickens, with many of his memorabilia including a strand of his hair and his chair. It features in the Pickwick Papers – but this is not a distinguishing feature, as so many pubs in England seem to share this touch of fame.

Ann outside the Leather Bottle

Bleak House was Dickens' home for many years, with rooms named after his characters.  Last time, we had Fagan, but this time we have moved upmarket with the Copperfield Bridal Suite – a glorious, large airy room with full dressing room, en-suite  bathroom with bath big enough to swim in, and a balcony overlooking the tiny harbour and the town.

On the balcony at Bleak House

Dickens' Study at Bleak House

Dickens' study – where he wrote David Copperfield, overlooking the wild North Sea and the treacherous Goodwin sands – is open to visitors, and wonderfully atmospheric, for folk who enjoy treading the nostalgic path of history. The place is run by Lee, a gaunt, wiry old man with thin round glasses and a grizzly grey beard, who sleeps in whatever room is vacant, or – as last night – the bar when the hotel is full, which he seems quite happy with. He wears a thin flowery top that makes him look as though he rushed to get up and is still in pyjamas. He appears to do everything: receptionist, porter, barman, waiter, carpark attendant, and even chef and room cleaner if other people don't turn up. One guest said, "weren't you on duty last night?" He said, "no that was my identical twin brother!"  Tonight he said, "I've only had two cigarettes today. I'll just run out to get another pack. He reminds me in appearance and manner of my brother, Peter, except that Peter would roll his own, and use his special tobacco.

Last evening, I dozed on the bed after driving down, to be woken by a shouting match. Ann had already left the room to deal with it, telling the woman her husband has cancer and was sleeping, and she did not expect staff disputes to waken the guests. This morning, the factotum came into the breakfast room with fulsome apologies, kissing Ann's hand and clasping mine, appologising for the behaviour of his manager, who had been shouting at him for some minor thing. He said he had told her before about unprofessional behaviour in the hearing of the guests. Then he brought us a first class breakfast, before having to step over his bed behind the locked bar for a pint of coke for another guest's breakfast. Kent has always been a little quirky.

The smell of the Bug of Death

I have acquired a noticeable odour, that follows me like a sick fog. I noticed it a while ago, but now Ann has commented on it as well. Ann is a great researcher, so found that there really is a pungent chemical marker in cancer – a polyamide – and dogs can be trained to detect it. I am starting to spray regularly with an aftershave, and even spray rooms I have been in, but it makes me self-conscious. When the children come round, or I go to face-to-face meetings in London, I try not to stand too closely to the others, or breath over them. I am certainly much weaker and more tired now than even a few months ago. This is the smell of death and despair, of darkness and despondency.

Logo of the British Uro-oncology Group

Next week I meet the oncologists to determine the next step in this journey, an assessment of my suitability and fitness for chemotherapy. Dr Martin is a respected oncologist, on the Executive Committee of the British Uro-oncology Group, or BUG. Their logo is like something out of a science fiction horror movie. Clearly some wit with an unsympathetic sense of humour has added legs to the cancerous bladder/prostate image – but only six legs, so it is an insect not a spider – and looks more like an infestation than a treatment option. On reflection, perhaps it is appropriate. After all, bugs are undesirable things, in people or computers, and this disease and its treatments are certainly undesirable – like the very worst of all bugs.

Is cancer odour common? Please add your experience…