Confessions

Grandad-John in the Flamingo Chair

I must admit a confession to my reading public, one borne with shame and one from whose admittance I must expect ridicule and condemnation in equal measure. We are in Budapest, a most beautiful city where we are taking a short break from the rigours of a peaceful village. Yesterday we indulged in quaint history at the museum of electrical inventions from the turn of the 19th century (old motors, switches, bells, telephones etcetera), followed by a visit to the Museum of Sweets and Selfies - a bizarre collection of colour and toys designed more for young adolescents than grown respectable ladies and grizzled bearded men, but heaps of fun battling through a forest of pink bananas or relaxing in a pink flamingo chair. We followed this by a sudden dive into a gluten-free bakery Edwin had spotted where we indulged in gluten-free beers and a choice of delicious cakes and pastries. But I am glossing over the confession.

Ann in Museum of Sweets and Selfies, Budapest

That evening, being late, we dined in the hotel restaurant where – although nominally vegetarian – I succumbed to a starter of Hungarian goulash. This was filled with large cubes of succulent beef, suspended in a carefully spiced stew of vegetables, and I will not pretend it was not delicious.  But then to crown my sin I selected a dish of wiener schnitzel: a large dish which covered the plate in bread-crumbed Bambi. Retribution was swift. I had forgotten how poisonous red meat is to the kidneys. Mine are already shot to pieces, filled as they are with large cysts and in the throes of advanced renal failure, and they were completely unable to cope with the added load of lethal nitrogenous waste to which I challenged them.  The unaccustomed load of heterocyclic amines and breakdown products of urea and uric acid so irritated my kidneys and bladder that I was awake every hour throughout the night having to run to for a painful wee. 

Today I am confined to my room, unable to stray far from the toilet. Believe me, if anyone suffers from kidney disease, the revenge of the animals can be swift and sure. Today, I am dining on salad leaves and drinking weak tea.

Radiotherapy

Two wonderful new poems by Ann, reflecting the emotional upheaval that hits us all when cancer strikes, and the support given by the few who count.

Radiotherapy

Like an exclusive club
they sit crutching one another,
wishing each other health
drinking water from plastic cups,
no Waterford crystal here,
just disposable kidney bowls
hairless heads
wrapped in flowered bandannas,
or home knitted bobble hats
wrought by loving fingers,
there is gentle charity
in each soft, weak smile
of camaraderie,
sympathy
and huge humanity.

Annie Elliott

Lip Service

They come and go
with fancy words
and Judas' kisses,
touching sorrow
digits never dirtied,
souls never bleeding,
but yet, they touch you
more than the love
or the constant ardency
of the faithful band
who always have your hand.

Annie Elliott

I considered the crudity of radiotherapy (DXT) in previous articles where I likened it to "burning the witch". In some ways, it is just as crude. Lines of people waiting treatment of all ages and backgrounds, rows of old men drinking to fill the bladder for their prostate therapy; women for breast or ovary cancer; younger people with brain cancers; or children with leukaemias. Many in caps to hide their chemotherapy-induced hair loss. All get the crude blasting of the rays. Somehow, it is reminiscent of bygone days of treatment with insulin, or cold douches, or ECT: violent, indiscriminate, yet it is all we have.

I have to strip to my underwear, and pull them down to expose the tattoo marks to line up the lasers. I never pull them enough, so the young girls (radiotherapists always seem to be young girls) end up pulling them down further, exposing yet more of me to their indifferent gaze. They then push their hands under my buttocks to pull me about and line me up accurately. It is fortunate I'm in no state for arousal, or I might get more burnt than the bladder.  One day we will have potent treatments against cancer, perhaps a simple inoculation to stimulate the appropriate white cells to march against the invaders. Then shall we be unshackled form these mighty machines, and they will be no more than a curiosity in some documentary of the past.

Sir Billy Connolly sums it up in an article in The Mail today: "As bits slip off and leave me, talents leave and attributes leave. I don't have the balance I used to have, I don't have the energy I used to have. I can't hear the way I used to hear, I can't see as good as I used to. I can't remember the way I used to remember. And they all came one at a time and they just slipped away, thank you. It is like somebody is in charge of you and they are saying, 'Right, I added all these bits when you were a youth, now it is time to subtract'."

One down one to go

Some good news this morning - I had a scan of the lymph glands in my neck, to check for any spread from the melanoma of the ear, and they are all clear! The doc didn't even find one big enough to biopsy. So that front's looking good – one cancer down, just the bladder to go. As a second bonus, I love to listen to Bach Before Seven each morning, as an oasis of peace before the madcap day begins. This morning it was Céline Frisch playing the third of the 48 on the harpsichord, which is the best way they should be played. Absolute bliss, joy and beauty.

We have Ann's cousin Alan staying with us this week. He's always interesting to talk to, full of stories and usually they're about strange things that have happened to him. His current saga relates to his former second wife, Iris, whom he's trying to divorce, though without much success yet. Iris is from Trinidad, the larger of the two Caribbean islands comprising Trinidad and Tobago, and he and she both starred in a TV programme about retiring to a dream home, when they looked at a potential house on Tobago.

Iris seems to be intent on dragging out the divorce for as much as she can screw out of Alan. This seems to be something she is professional at, as it's her third marriage, plus a number of commercial interests she has sued. They were only married for four years, and the divorce looks like it will take longer than the marriage lasted.

Alan's new girlfriend is from Jamaica, and very strong on obeah, or Jamaican voodoo. We think he may be leaving the Trinidad fire for a Jamaican frying pan - she's already referring to him as "her fiancee". She has organised various exorcism rites to rid Alan of the evil spirits within his soul (meaning Iris). Now she has asked if Alan would like Iris "dealt with". However, Alan has said only if it resolves the drawn out divorce – but a definite no if it involves anything violent! As Iris was his second marriage, the way it's progressing, for Alan too it's going to be one down and one to go!

The ending of a bad year.

The year looks like ending as it's been all through. The company I work for is transferring my project for development in Japan, so I may be redundant before the year's end. And now the main sewerage drain is blocked with a tail back of filthy sludge, so we'll have to call the drain men out.

On only the third day of my radiotherapy treatment, scheduled for 6:30 last night, I was already dreading taking the huge doses of Vitamin B3. Edwin took me to Addenbrooke's, but I was right about the tablets, He had to stop on the way home to let me out, when I was repeatedly sick, and I have spent most of today in bed or shivering in a blanket.

One bright spot was a letter from my grandson, Luke. It is two full pages of beautifully written and interesting items, spelling out his hopes for A-levels and university, and quite unlike what one reads about messaging by today's youth, with their texted emphasis on Emojis and weird abbreviations. The art of letter writing is clearly not dead, and I was hugely moved to get the letter. Now I shall lie back and have another sleep, to gather strength of my next treatment on Monday. Only 17 more to go.

Burn the Witch!

Lining up the lasers

The day began cold, with heavy cloud leaving the sky still dark at 8 o'clock and wet with clinging drizzle. Cancer is like a wicked witch working evil within. And like witches of old, the evil must be burnt out. Let the fire begin!

The first ritual burning began at Addenbrooke's Hospital this morning. I stopped in a lay-by en route, to take the ten vitamin B3 tablets I am instructed to take one hour before the appointed time. Then I am stripped to my underpants to expose my tattoo spots, and laid on a cold steel slab. The oxygen mask is fitted across my face, and the laser guide beams turned on. I am moved and poked to manoeuvre me into position, then everyone leaves and a siren sounds to warn of radiation danger. The machine thuds to life, and cold air from the cooling fans adds to the discomfort. To the sound of loud bleeps, the whole thing begins to turn round me, blasting the bladder from different angles. Opening my eyes is highly disorientating; the optical illusion is so strong that it seems to be me that is rotating, rather than the machine, making me dizzy, certain that the table itself is tilting and will tip me off. So I keep my eyes closed, or stare through the gaps to the ceiling of the room rather than at the machine. Then there is silence, and a voice says "that's all done," and they release me from the straps and let me down.

Many people waiting for this treatment seemed to be alone; it was strange to think we all have cancer in common. But I was so glad that Ann and Edwin had come with me. They steadied me as I left, and gave comfort that I was not alone, and we would get through this together.

Laughing at Bladder Cancer

Down to London this morning for a business meeting. London was its usual hectic self. I certainly felt much more energised than I have for some time. I suspect my tiredness has a strong psychological component, but Ann has an easier explanation: in London, you have to keep moving or you get mugged.

On the tube, and in the inevitable breaks in these meetings, I started reading a book Ann bought me when first I got my bladder cancer: The Funny Thing About Bladder Cancer by Guy Wheatley He certainly captures the positive side of what we go through, from the first finding of blood and the first cystoscopy through the drama of despair and hope as treatments progress. I envy his style - I'd love to have so much humour about it all. But he wrote the book some years after the first diagnosis, so hopefully he's looking from the perspective of being clear. My perspective is looking at a great pit, and I'm still waiting to be able to turn round and look back at it. Interestingly, I always thought the big advantage of private medicine was the speed of diagnosis and treatment, but Wheatley had huge delays despite having private medical insurance. He owed debts to the insurance company for some previous treatments that hadn't been wholly covered, so they called in a debt collector and refused to pay out anymore – even for his cancer investigations – until he'd paid off the debts. 

Ann is the archteacher of business meetings. When I started, I was abrasive, interupting people with my opinions, certain I was right, I generally didn't stay at those jobs for long. Now, I generally keep silent, answering questions if asked. I still think I am right, but I try to keep my opinions to myself. It's funny how little managment want to know about what's wrong with their system. I could offer them a one man Deloitte or McKinsey business consultancy and save them a fortune.

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.