More tests

A Quiet Time Neath Summer Skies

I scan the gravestones that arise -

The black, the grey, some barely there;

This faded wording all remains

Of lives of care and shot with pain.

I am so very weary now.

I weary on the path.

My feet drag heavy with the hour

Each lonely step I'm forced to tread.

Some say it is too much to die

And some it is enough.

As comes the moment, moment takes

Out thoughts, out words, out love, out aches.

Though hovers ending darkly near,

My song was lived in light.

No life at all would I have known

Had I not joined the fight.

July 2021

Walking with the dogs in a July sun (how long ago we saw that glow), I took the path through the fields, ending at the church yard. There, sitting in the warmth on a graveyard slab, I jotted some lines that I have just refound, and I have put them here as a reminder of how moods fluctuate.  Following the brain scan on Tuesday (Whisky, scans and phones), every time I forget a name or word, or do something silly, I immediately say: "it's in the brain!". However, we received a phone call from the hospital telling me an appointment has been requested for a whole body (from "eyes to thighs" as the woman put it) PET scan at Addenbrookes. So now we wait upon another test, searching for possible secondaries, but this is good news as we think they would not bother with further tests if the brain scan had shown extensive spread. 

In Clare, the Bell Hotel has reopened after two years of closure, so on Thursday we went in for a drink to see what it was like. They greeted us at the door with a glass of prosecco, and plied us with trays of canapés, which was all very welcoming, so yesterday we booked a table to test the food. We were the only people in that restaurant. It was not good. The chef told us they had refurbished the kitchen, and invested in a smoker he wanted, so much of the food was offered as smoked. I opted for the grilled sea bass, unsmoked. It came with a smokey smell and a mountain of salad, and was very dry. Ann had the only vegetarian option: a strange mix of mangled vegetables like a weird coleslaw without the mayonase. We were the only people in that resaurant. Afterwards the chef came to see how we'd enjoyed it. He boasted that he liked to add some smoking to 'improve' the flavour. We left much of the meal, but being their first night did not like to complain. However, they virtually complained about us, saying 'did we not enjoy it', or 'was it too much?' Even the coffee was undrinkable. I asked for a latte, but their machine had not arrived so they made it with Nescafe and half and half milk. But they didn't warm the milk, so even the coffeee was cold. Afterwards, we retired to the Swan, our favourite haunt for post-prandial drinks.

Trinken den Wein

Although it sounds a contradiction, Edwin visited a German market in Cambridge last night. He said he intended to "trinken den Wein", so I told him not to "trinken too muchen den Wein!" but he's never paid much attention to advice.

For myself, I haven't "den Wein getrunken"since I started this treatment last week. Not from any reason of virtue, but in case booze of any sort clashes with my stomach and makes me feel even worse than I already do. Matthew and Rosie came over today to take me in, and I carried a towel and sick bowl in case I vomited again. I spread the tablets out over a longer period today, and that seemed to help a bit. Though still nauseous, I avoided embarrassing myself or messing their car.

Radiographers wanted

There were delays for us all on treatments this morning, and the waiting area was full. One small child with no hair was wheeled in by her parents. Several women had scarves to cover their hair loss, and one woman had a large bald area over a depression over her skull, where probably she was being treated for a skin cancer. A man next to me, also with a cap on, told me he had surgery for a brain tumour followed by chemo and now radiotherapy. He was still in his 50's, and said he'd expected to have much longer to live. Now he was going to work through his money and get things he really wanted, starting with a set of Beat headphones, then taking his family on holiday early next year for which he'd rented a holiday home in Norfolk.

We are all at the point in our lives where cancer is the signpost to change, usually degenerate change. It served to point to the variety of people getting radiotherapy treatments, although a poster in the waiting area pointed to another reason for the delays: a shortage of radiographers. My radiographer explained that most people have never heard of therapeutic radiography as a career option, though it is so rewarding a career and full training offered. Anyone interested can contact their nearest hospital training group.

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.