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'."

Schrödinger Witch

Ten treatments down and ten to go. Half way through. I feel as though the witch inside my bladder is half-dead and half-alive – a true Schrödinger witch, simultaneously in both states that will only be resolved into one state or the other when it is finally looked at.

Waiting with our coffee, we shared a small table with another cancer patient. She has already had both breasts removed, and is in the midst of chemotherapy before starting her own course of RT. She had had her blood test at 12:00 but has to wait until 4:00pm for her next treatment, so was bored with the place and happy to talk. She was eating a chocolate bar and works by refilling the various food slot machines, including the ones in Addenbrooke's, but didn't expect to back as a user of them. A young teenage girl was wheeled by with a drip and nasogastric tube in place, reminding us all of how fortunate we have been to have enjoyed relatively long healthy lives, and how unfortunate are some fellow creatures.

Nimue and Merlin by E. Fortescue-Brickdale

I am reading the wonderful modern version of the Thomas Malory King Arthur legends, The Once and Future King, which is a revelation and pleasure to take my mind away from myself into the mythical land of neverwas. White was such a deep scholar, his use of multiple words from ancient English is overwhelming, and I have begun to read it with the computer switched on to look up meanings, and am pencilling them  in the margins, for future reference. Almost every page has a new word, and they're all wonderful:  kerns were peasant foot soldiers; Nimue was the ancient name for the Lady of the Lake and keeper of the sword. I know little of these Arthurian legends, but they are wonderful stories. The first part of the book, The Sword in the Stone, strongly reminded me of some features in Harry Potter, and it is interesting that J.K. Rowling described White as "her spiritual ancestor".

Although legend, it is surprising how much overlaps even present day life. "England's difficulty is Ireland's opportunity", as Merlyn says. How truely prophetic of the current impasse in extricating ourselves from Europe! Ireland seems to be the one difficulty that cannot be overcome. How cursed we are to have taken Ireland, and left a land divided. Now we must reap that which are ancestors have sown.

Meeting Sylvia

Two days ago, I had a meeting at the Holborn office of the company I work for, staying at a hotel in Stratford.  Ann came with me, to meet up with a friend she has not seen for some time. Sylvia is tiny, but a wonderful, vivacious lady who came into our lives when she was tutoring Edwin for his A-levels. She habitually dresses in black, and is even more intolerant of gluten than Ann. Food allergies are serious, and she is wise to take them seriously for there have been several incidents recently of people dying from incorrect labeling. We met for lunch in Jamie's, where she quizzed the waiter at length to make sure the pasta really was as gluten free as it boasted on the menu.

Ann and Sylvia meet in Jamie's, Stratford

Her son-in-law has cancer of the face, discovered by chance by the dentist who noticed a small ulcer. He had to have the side of his face, one eye, and some of his jaw excised. He is now having radiotherapy to the area, and will have to go into hospital to be tube fed during the last treatments, as he will be unable to swallow. Sylvia is struggling to support her daughter and grandson through it all. It rather puts my radiotherapy into perspective; the worst I anticipate having is being unable to wee.

Going home, there had been an accident on the M11 which was closed below Stansted. The information suggested it wouldn't be cleared for two hours, and the queues were unbelievable as everyone tried to divert off at the M25. We attempted an alternative route, but it took over four hours for a journey of normally one hour. I especially feel sorry for those trying to catch a flight out of Stansted, or a train from London. How can one person's thoughtless stupidity cause so much havoc to so many tens of thousands of people?  One blessing of autonomous cars should be a freedom from this type of accident. I do not even know if the driver lived, but when they do, those drivers who cause major delays through their selfishness should be automatically imprisoned.

I am listening to Schubert's string quartet No. 14 as I write this, the Andante con moto section of "Death and the Maiden". The tonal changes are breathtakingly moving, and lift one to another dimension. How can one person bring such wonder into the world? This too seems to put our problems into perspective.

Most of us achieve so little with the lives we have, whereas one person can change the lives of thousands, for ill or good. For most of us, the changes we make in the world are tiny, but whether we strive to bring poison or platter to the world is a choice we must all make.

Ring Tones and radiotherapy

Many years ago, as soon as such things became possible, I composed my own ring tone called JohN. It was a simple MIDI file, no masterpiece certainly, but a distinctive and compelling tune that I owned and could identify as my phone ringing. It has followed me all my mobile life, being converted to MP3 or other formats for transfer to each new phone.

Then I got the iphone. Apple insist on their own format for music, so I had to convert all my libraries to suit them. Ring tones require yet another format, m4r, so this I did. But I could not move it into the ringtone folder. Despite all the advice I could find on YouTube or in blogs, it would not load. I was stuck with a hideous alien tune for months. Finally I read that Apple had removed the RingTone folder from view! Last night, I finally managed to hack into the folders and save it there. I whooped round the house, getting everyone to keep ringing me to show off my tune, though Ann said, "it's a horrible tune, anyway."  I disagreed - it is a catchy number, and "a small thing but mine own".

Today, I went for radiotherapy planning. I had a scan to find my bladder, before being marked with three permanent tattoo spots so they can set the machine up exactly the same each time. The treatments will be intensive, but won't start for two to three weeks, so will run right across Christmas and into New Year. I asked if they stop for the holidays, but unlike outpatients and routine admissions, they don't. They have to carry on regardless, otherwise they would lose too many treatment slots. Dr Martin promised to write a letter for the insurance company, but our holiday to the Holy Land is definitely lost.

Autumn Leaves - living with bladder cancer

Rather than taking whatever is thrown at me from the specialists, I decided to do some of my own research into modern biological treatments. This led me to a recent research paper about urothelial bladder cancer (UC)†.

I noted that muscle-invasive cancer of the bladder accounts for 20%–40% of cases. The standard of care is radical cystectomy (removal of the bladder) with or without chemotherapy, or else concurrent chemoradiation as a bladder-sparing option. However, even after treatment, up to 50% patients develop recurrence and most patients die of metastatic disease within 3 years of diagnosis. Patients with metastatic disease are incurable, and 5-year relative survival remains dismal. Gee, thanks! And it goes on:

Systemic chemotherapy with cisplatin-based regimens is the standard of care, leading to median survival of around 1 year. For patients unable to tolerate platinum-based therapy, the median survival is only 6–9 months. Furthermore, up to 30%–50% of patients with metastatic UC are ineligible to receive cisplatin due to comorbidities, limiting treatment options. Until recently carboplatin-based regimes were the only treatment options, with no substantial improvement in clinical outcomes†.

However, after forty years, some progress has been made with the approval of several biological inhibitors in metastatic UC. The only problem is the cost: £75,000 – £150,000 per patient. I asked my oncologist if any were available, even privately, but he said not. It is approved in this country for malignant melanoma but not for UC.

Walking the dogs in Clare country park, it is late autumn. Many trees lie bare now against a clear blue sky, while others carpet the ground with bright colours of red and gold. I am determined to cling to hope, and it's hard sometimes to remember that cancer rages within me, but tiredness catches me earlier each day to jog the memory. With so much foliage dying, autumn is an unfortunate season for hope. I must await the spring, and see how my treatments progress.

†DD Stenehjem, D Tran, MA Nkrumah, S Gupta. PD1/PDL1 inhibitors for the treatment of advanced urothelial bladder cancer. OncoTargets and Therapy 2018:11 5973–5989

Two Ways to Manage Bladder Cancer

Two strands are emerging in managing bladder cancer. First, Dr Martin, the oncologist, phoned to discuss my decision to go for radiotherapy, re-going over what I had already been told: that I would have an appointment sent through to go back to Addenbrookes for a further bladder scan, and the addition of tattoos to my abdomen to mark the spot for the radiotherapy, which might start a couple of weeks after that. I resisted the temptation to ask, why he hadn't just said that on Monday when I was in the room with him!

He emphasised that my chances of going on holiday after Christmas were small to the point of disappearing, as even if the therapy was completed by then, I might be too tired and weak to go. I also asked him if there were any recent treatments that might improve the odds, but perhaps hadn't been approved for prescribing under the NHS, even if I had to pay for them myself, but disappointedly he said there weren't.

Second, my niece in Coventry sent a parcel from an on-line shop, Live Better with Cancer, that contained special creams to sooth burnt skin, a warming blanket for when I get shivery, and ginger sweets to refresh the taste buds and ease nausea. I first met Sue as a new born, when I took her a gift of a yellow elephant, but generally we only see her and her family when we visit my brother's, for we've never been a very close family. But this gift, totally unexpected and so thoughtful, moved me to tears, to realise how much care went into its choosing from someone I rarely see and hardly know, despite being a close relative.

Now I await radiotherapy: the calm before the storm of radiation hits my body. I continue to work, and it provides a good distraction – it requires intense thought, and I can certainly think of nothing else at those times. The cancer sites are spot on – a good job is great distraction therapy.