The Great X offers to help

Ann has allowed me to take over her special room. This is her sanctuary, into which no-one is permitted without special and rare permission. It contains her private things, with their special meaning for place, time, or person, and is the place to which she retreats to be alone, or to recover her spirituality. Now she has put me in here to nurse. All week, she has worked tirelessly to support me, physically, mentally and medically.

The Moroccan Lamp in Ann's Room

She is having to do so many extra jobs now, for while still preparing meals, getting shopping in, cleaning, and making drinks, she has the additional burdon of jobs I used to help with: sorting the rubbish, washing up and emptying the dish washer, and cleaning the house of dog hairs and the garden of their mess. All the pain and swelling on her head where she fell and hit the pavement, with her yet broken and deformed hand still prevent driving, so she has to ask MA to take her to Clare for her hair, or to sort out ordering more catheter bags from the chemist.



This afternoon, we had a card from the Great X, covered in pink blossom and well wishes, with a message that, "she was so sorry she didn't live nearer, for she would love to help."

The Great X is a nurse who worked in a hospice, and is at her best with these cases of high dependency. She is brusk and efficient, and indifferent to medical mess. Ann said, "would you like her to come down?" Edwin offered to pick her up from the station, and MA said, "you'd love her to come. She'd be really good at looking after you."

I shuddered a little, and said I agreed that she would be very good, but I thought it might not be appropriate, and I didn't really want her fiddling with me down below.

Then the doorbell rang, and our young granddaughter, who'd been silently listening, said, "That's her; the Great X has arrived!"

I am adopted by Cat

I do not know which is more likely to become infected: residual urine, or a catheter. As a man, I know I would prefer the residual, which for a few hours gave me mobility and relative comfort. As a medic, I know catheters often leak, and are always uncomfortable and get infected. However, the surgical team decided that a pool of residual is not a good idea, so I am now confined with a catheter and leg bag for a week, which is both uncomfortable and has developed a slight leak already, so I have to have pads as well.

Patients with colostomy bags are encouraged to give them names, but this contraption is unworthy of being so distinguished. So, like Holly Golightly, I call it "Cat", for it pulls and claws my leg, requires constant attention, and I had not sought it but it adopted me. Cat feeds off me, is not house trained, and requires constant cleaning out and grooming.

Bloggers are encouraged to post photos to lighten the page, but Cat is unworthy of even a derisory photo, so shall remain incognito. I have never been attracted to cats, and this is the worst of them all. My only hope is that it will be removed from my care and put down next week; but they have already hinted that if the residual does not clear, they may foist another Cat on me, with the possibility of a prostatectomy dangled threateningly before me as well.

A little light lie

On the day we are born, we are sentenced to death and fated to live our lives in a condemned cell. In youth, it is remote and unconsidered. With age, we learn for certainty that the sentence will not be remitted. The only unknown is the length of time in the cell. With age and cancer, the remaining time is shortened. Now I can only live each day as best I may, and enjoy those moments I am still free to explore a life yet to be lived, brief though it may be. For this is not a “clean” cancer, but a solid invasive tumour, requiring resection of the bladder wall, and eliminating the possibility of further treatment with purely intracystic local chemo.  This may require radio- and chemotherapy, or -potentially - cystectomy. 

The surgical, radiological and oncology teams will convene in two or three weeks to discuss future care. In the meantime, I continue with a bag and catheter, and such hope as I can muster. My fortune is to have such strong family support, though as yet I have not told them at work. I said, with some air of truth, that my wife would be in hospital this week, so I would have a few days off. I had not realised how racist is the phrase "a little white lie" until I started to write it; now it hits with great force, if one substitutes its opposite. I suppose this is not so little, though, as it is to protect me rather than the feelings of others. Perhaps that should be "a great red lie"; but the little ones, meant to protect rather than harm, could be called "little light lies". 

Going for TURBT

Tues 2/10/18

TURBT is "trans-urethral resection of bladder tumour". Edwin and Ann brought me to the ward in time for the 7am check in, Ann still being unable to drive. It was dark when we left, and Ann with her poor sight is unable to drive at night anyway. Eds dropped us at the door, and went back to see to the dogs.

So far so boring, then suddenly at 8am constant bustle and noise with the staff change over: cleaners with commercial floor polishers; trollies screaming like sirens as they carried patients out; an alarm from the adjacent bed going like a high pitched metronome beating out 2/4 time; and chattering nurses, auxiliaries, social workers, physios, students, the anaesthetic team, and occasional doctors. This is an acute surgical ward for all surgical specialities, so different surgical teams visit each patient. Mr Sangupta came to explain and sign the consent form: basically a legal agreement to let them do whatever they wish. It’s 11 weeks since the first sign of bleeding, and 4 weeks since seeing him and being placed on his urgent waiting list.

Ann helped me into the surgical stockings; they were tight and difficult for her broken hand. I said it was a pity Edwin hadn’t stayed, for his strength, but Ann said “he doesn’t do feet!” before she had to leave to wait in the restaurant. The op started at 10am, and was completed by 11am. Visiting wasn’t until 3pm, so Ann sent a text to MA asking her “to come straight to the hospital.” Unfortunately she sent it as a round robin, so up north Lucy panicked and started to make arrangements for the children to be collected from school before Ann could enlighten her before she set off. But MA and Edwin met in the lobby, and the three then spent the morning in town, lunching together.

Full House

Three sets of visitors make a Full House. Sam’s parents in the morning, then Ann’s friends from Up North in the afternoon. We had been going to take them to lunch, but they arrived too late, and we had no bread for sandwiches until MA came with a rescue loaf. Then  MA, Sam and the children came in the evening and brought a curry with them.

Lorna asked if Ann had her bus pass yet, so Ann checked on line. She isn't eligible until she's 68. Also, it’s only valid in Suffolk, and there aren’t many buses she could use. She would have to drive to somewhere like Haverhill to find a bus, and they probably go to Cambridge or Essex, so she couldn’t use them.

Edwin left early for his pilgrimage “Up North” visiting Chester and Liverpool, but via Manchester as it turned out, for several lines were closed for maintenance, and Northern Rail was on strike. He went to support a fellow PhD student who was presenting a paper to the Gaskell Society, and has been asked to present the key note address at their conference next year!  

Making a splash

We went North at the weekend, to celebrate our grandson’s 16^th birthday. His father had told him it was to be a surprise, then took him to the Middlesbrough match, and he thought that was the surprise. But unknown to him, we had all assembled at the house, and hid behind the door when they returned, to leap out and call “Happy Birthday!”, so he had a second surprise and was suitably thrilled by the attention he got. Everyone was there – even the Great X – but not the boy’s uncle Dan, who went to the match, but then said “If dad’s there, I’m not going!” We have never learnt the cause of his animosity – but he completely ignores Ann, Edwin and me if he meets us, and even hurts others to avoid me.

Ann was on the Embankment in London some years ago, and our young grandson was staying with his uncle and met them by happenstance, shouting "There's Grannie Annie!" The boy ran across to greet her, but Dan stayed sulking in the shadows, and would not greet her or Edwin. Now, he cannot even bear to see me, though I have a second and even more nasty cancer to deal with. Who needs such animosity in their life? People of such ilk are not worth the knowing.

Yesterday was the pre-operative assessment at West Suffolk Hospital. They had asked for an early morning MSU, and I had carefully prepared and labelled the bottle at 6am when I got up. I put it in a plastic bag, and in a folder with its forms. As we walked towards the hospital, we suddenly heard the repeating screech of a car alarm. “Is that my car?” wondered Ann. I went back, and sure enough it was! I think the low sun streaming through the window may have triggered it. Unfortunately, in my rush, the urine bottle had slipped out of the folder. I went back to pick it up to find the bag and paperwork soaking. Ann said, “the bottle has a split in it.” In fact, it was completely flattened, with urine squeezed out with great force onto everything. The only car to have followed us in must have aimed straight at it, and run it over. In the clinic, I could only apologize, and give them a mid-morning mid-stream sample in a new bottle.

On the mild side of Wilde

Stopped at a favourite watering hole for the pint that refreshes on the way back from London.  The Three Horseshoes  is conveniently placed about half way home, just after leaving the M11 to take the direct and pretty way home. After a hard day in the office, it's good to unwind and collect my thoughts before trundling back across the slow country lanes. It's a very old hostelry, no doubt a stagecoach stop long before Stansted; possibly even before stagecoaches. It's the sort of place the Romans might have used after a hard day's road building. They have a selection of ales from microbreweries, and change at least one every week. Today they had one I hadn't seen before: Oscar Wilde, a mild beer, yet brimming with a dark quality that glinted mysteriously in the low light. A most delicious ale, worth capturing, as I will probably never meet it again.

Working into retirement definitely has some purpose with stops like these, and makes a journey to London well worth the effort. The work's good too, though travelling on the tube in the rush hour grows more challenging each year, with the crush of elbows and knees on spots that are more tender, and legs that grow tireder with the standing, becomes ever more intense.