Tuesday, 26 October 2021

Admission to Papworth

 I left home asbut though it were the last farewell to England. The dogs were moping with their ears back and tails down as though they knew something was afoot. I stepped outside to breath the clean autumnal air, so crisp and fresh, so final with the leaves. Ann drove me to the door of Papworth Hospital, and we said a sad goodbye ere I donned my mask and was forced to locate and show my letter before the bouncer on the door would let me pass into the vast cavern of Papworth reception hall, eirily empty and silent during Covid restrictions. 

I tried to enter a lift, but they have a strange system whereby one has to enter the chosen floor from an external keypad: once trapped in the lift, we can only go to the floors preselected by the staff. I had to get out and enter Floor 5 and await a different lift to arrive. Another patient got in with me. I knew she was a patient, as she had no uniform and, like me, carried a bag and a stick. I assumed she too was going up to Floor 5, as it shot past her destination and she lamented, "I wanted Floor 3", a member of staff explained the unusual rule, so she had to go back to the reception area and try anew.

Now I have been admitted to the ward and have had a succession of visitors - more in one hour than in 6 months in Hundon. Someone called to check my name and afix an arm band, someone came to take an order for lunch, then a porter to wheel me down to a back lift for a chest X-ray, another to measure BP and vitals, another two to take bloods for cross-matching, a surgical minion to tell me I will have to sign more consent forms, someone else brought my lunch, a guy popped his head round and said "I'm Greg, I'll be in later", without saying what he did or why I might expect his later visit.

My luxiory suite in Papworth Hospital

Then a nurse came to ask many more questions about my mobility and state of mind, though she threw me when she asked what year it was and where I was. I thought she must be losing it if she didn't know, but then realised she was checking I didn't have dementia. "Can you get out of bed yourself, and walk unaided?" she asked. I said I could. "You won't be able to after tomorrow," she cheerfully informed me. That sounds a bit bleak.

Then an ECG with a shaved chest, followed by a form to consent to my bits being used for research. Finally, an anaesthetist came, a tiny Australian lady, to describe the procedure in tedious detail including all I might expect and all that might go awry. Unlike Ann, I have not read anything about it, for I reckon I'll find out soon enough. But my blissful ignorance was shattered by this woman who described in detail how they will be forced to place an extra large tracheal tube down my throat and into the main bronchial passage to facilitate the collapse of the lung, this making the surgery a little easier. I will be left with a sore throat, a large drain to help the lung reinflate, breathlessness and a horrible cough spitting blood! I wish I'd never asked. Oh, now I remember - I didn't. They just told me anyway.

The room itself is large and airy, overlooking the Gog Magog hills from the fifth floor, so a good panaramic view. It has an en suite bathroom and shower ready for tomorrow's ritual to begin. I will keep you posted as and when I can, dear readers, for now it grows dark as the day flees the dreaded night ahead.

Monday, 25 October 2021

Edwin's graduation ceremony and party

Dr Edwin Marr, PhD

Thursday marked the final milestone in Edwin's education when we attended the degree award ceremony at Anglia Ruskin University. We each had to show our Covid passports to get into the Guildhall for the robing and photographs, and again to enter the Corn Exchange where the ceremony was held. As any religious service, we all stood as a brass band heralded the procession of a mace bearer and distinguished academics who took their places in some order of seniority or precedence unknown to we mere mortals. Speeches were given and then the names of scores of BA's, BSc's, and ordinary Masters were read out to order their march across the stage to doff their mortar boards to the Vice Chancellor. Finally, at the very end of the proceedings, the names of a very tiny but much more distinguished group were read out, and the new Doctors of Philosophy stepped into the limelight. Each had the title of their thesis read aloud to us, and then were presented with their new gowns and very distinctive head gear, each placed carefully by the Vice Chancellor upon their shoulders and heads. The Vice Chancellor was a somewhat short lady, and Edwin had to bend the knees before her to come within reach while remaining vertical. 


Edwin receives has gown and Tudor Bonnet

Afterwards, following more brass band music and a reverse order procession, we repaired to ARU for a celebratory glass of bubbly and much congratulations. The hour was then late, for to make up for the backlog of ceremonies from last year when all was locked down, the University has had to hold twice as many this year, and we were the last of three on the same day. We then migrated to a wonderful Cambridge restaurant, the Ivy, to enjoy a late meal booked for 9:30 pm. For it is a great advantage of a city that places stay open late, and contrasts grossly with little Hundon, where our pub only serves meals four nights a week and last orders are at 8pm. We finished very late and well oiled, but could take a taxi back to Edwin and Andre's apartment where happily they had made a bed up ready for us.

Celebrating with home-made Brazilian chocs

On Saturday, we were late stop-outs again, for Andre had organised a huge party with some of his Brazilian friends to double celebrate Edwin's graduation and his birthday. It was held at a beautiful house with an enclosed garden in which were erected two gazebos and firepits. Andre had been baking Brazilian specialities all week, and had commandeered the freezers of several friends to store them in. The house was awash with wine and speciality cocktails, and even Mary-Ann, Sam and the two girls came to the party. Ann and I left early, but again we were rather late finishing. Edwin had given us a spare key, so once more we could fall asleep at their apartment. The wild dancing had begun before we left, and the party itself went on until 2am, so we certainly didn't hear the boys come in, but I gather they had a good time.

Ann in party mood awaits her drink

Next morning, to sober reality, I had to report to Papworth for an official PCR Covid test. I then had to promise faithfully that I would isolate until my admission to the ward on Tuesday. So though I walked the dogs on Sunday and again today, it was in an isolated spot in the country where I met no one. Now my bag is packed, and I am getting last minute instructions from Papworth about what to bring and what I must do once I am in the building. It is all very strict and well regulated. I may be able to report more once I am on the ward, as I hope to be able to use my laptop there.


Wednesday, 13 October 2021

Papworth, the Baltic Amber, and a new stick

 Yesterday was another Papworth day, arranged to discuss more fully the potential treatments I have to face. However, true to Papworth's style, it didn't turn out that way. Ann and I were ushered in to Dr Yang, a young specialist in radiotherapy of the lung, but at the outset she said she did not know a lot about melanoma, as she usually treated primary carcinomas of the lung. However, it was a general service offered to any growth in the lungs included secondaries from other sites, so she would be quite happy to treat mine. She then went into detail of the doses I would have, the potential side effects, how long it would take etc., almost like a rerun of the surgical appointment I had had. Then she said I could have that instead of surgery if I wished, but the outcomes weren't much different. At least, that's what I think she concluded, though it was hard to be certain. What she could not elaborate on was the prognostic outcome from either. If I have the surgery, or the radiotherapy, would it add many weeks/months or even a year to my life expectancy? No one seems to know, or to commit themselves to even a vague guess. I suspect they are too concerned with being sued these days, in case their guess is wildly out. 

People sue so readily, I expect some might sue because they suddenly have an extra year to live but have spent all their money; or a relative might sue because the life was shorter than predicted, so they want compensation for the extra time of grieving or a missed holiday. Everyone is so lentiginous these days; or am I just being over cynical? 

Anyway, to try and find someone sensible, I have managed to make an appointment with a McMillan nurse for next week. Hopefully we can at least discuss our concerns and worries to a disinterested person who is not responsible for providing actual management care. 

My stick has arrived
Edwin had hoped to take us to Papworth, but was working at the last minute so I had to drive and park there. We were over 3 hours there in the end, following a repeat X-ray and blood tests. The carpark fee was over £8! We had thought to be less than an hour, and the poor dogs were stuck in the car. However, we stopped to give them water, food and a good walk on the way home, and they stopped again for a lovely meal at the Baltic Amber in Haverhill. I am anaemic, to add to my long list, so broke my vegetarian diet with a Beef Stroganoff on the excuse that I needed the iron. I also fancied it, and was not disappointed. It was scrumptious, cooked in cream and red wine.

Also this week, we received the largest box Amazon have yet sent. It was not heavy, and we couldn't work out what could be in it. It turned out to be a stick Ann had sent for me. It was lying across the bottom of the box, with a mountain of paper stuffed over it. I get a little weak and wobbly on my pins come the evening, so it is to help me get out of my chair, and steady myself. It is a beautiful stick, in polished beech with a chrome silver handle and a pleasure to use - more like a fashion accessory than an invalid aid. Indeed, I took it for a twirl, making out I was Fred Astaire doing a dance routine, touching my imagined top hot, and slinging it under my arm, nearly knocking ornaments off the mantlepiece as I did so. But it is a great aid, and a pleasure to use.



Tuesday, 12 October 2021

A new porch canopy

The Women's Race is underway
 For a number of reasons Ann hates driving my car, but with my impending stay in hospital she may need to, otherwise the dogs will be left behind each time she goes out. One reason is the state I keep it in, so today I drove into Haverhill to rectify this minor deficiancy at our local carwash. Unfortunately, I had forgotten that the last stage of the delayed 2021 international women's cycle race was starting in Haverhill before going round most of Suffolk to end up in Felixstowe. My walk took me over the old railway viaduct just as the tour started, so I got a firstclass view of the event while they were still bunched up just a few minutes after the start. The first part was a short (20km) loop round to come back through Haverhill before the main road event, so the main road home was kept closed, but the back roads were still open.

Back home, we have put a new door canopy over the back door. This was quite a struggle, as the large drill wouldn't penetrate the brickwork, so I was only able to drill into cement bonding. The bolts provided were typical Chinese rubbish, and more like bits of tin that wouldn't tighten in the holes, so we had to take a trip to B&Q and buy some more sturdy bolts and fixings. Even so, because I was unable to drill into the brick we could only get the top two screws in, so I was concerned that the first storm would lift it away until it broke off and sailed across the road, so I have fixed the lower parts of the arms with Gorilla glue, and hope that will hold. They boast it is tougher than any other fixing, so we will see if it's up to East Anglian gales.

They're Off! AJ Bell Women's Tour Leaves Haverhill


Tuesday, 28 September 2021

The missing step to Papworth

 I finally managed to get through to one of the nursing staff at Papworth, so this is an update to my earlier post (The VATS Surgery is Booked). Her name is Youli and she was most helpful. We felt as though we had been railroaded into a decision already made for us, with no choice or explanation of possible alternatives, prognosis or outcomes, and several people had contacted Ann to agree that it seemed odd. Youli also agreed. She thought that somewhere, we had missed a step in the pathway. We should have seen an oncologist who could discuss the choices and best options so I could decide if I wanted what might be major surgery, or if I'd rather just leave things be to continue slowly growing, or possibly not so slow if it spreads to the brain. Anyway, she has agreed to contact the oncologist at Papworth and arrange an appointment before the date of the op, so there will be time for me to change my mind should I wish.

Afterwards, we both felt so relieved that our instincts had been right. Perhaps if we had gone for a quiet drink afterwards we could have discussed it and called the hospital back, but in rushing to Edwin's, we skipped that option. However, we made up for it today. Once my meetings were over, we could migrate to the Red Lion in Horseheath for a relaxing spiced rum, or white wine in Ann's case, and thrash it out between us. We came home in much better spirits.

Back home, I could work on my crane, cleaning the metal and giving it a coat of primer, ready for its final coats.

The VATS surgery is booked

Whatever else may be said of the NHS, or waiting times, or general dismay at the service sector, the Royal Papworth Hospital is hyper-efficient. My appointment was at 15:10 yesterday and we arrived 10 minutes early. The outpatients reception area is a vast high-roofed, cavern-like hall with a large number of vertical double-sided screens scattered at intervals, each with a surrounding halo of comfortable chairs. I gave my name to the receptionist and was told to take a seat until my name appeared on one of the screens. Ann went off to the lavatory as I walked into the hall to find a vacant seat near one of the screens. I was no further than halfway across when my name started flashing in urgent letters to "go to corridor B, room B2". Happily, Ann was still waiting outside the door at the far end so I had to bellow up the room to call her to quickly join me. 

Mr Andrew Peryt, the Clinical Lead for Thoracic Surgery at Papworth, is a serious Polish surgeon who was brusque and direct in his approach. He specialises in adult thoracic surgery with a major interest in lung cancer treatment. He dived straight into explaining what he intended to do, and what the percentage risks were for wedge resection of the lung, or removal of the whole lower lobe if he were unable to extract the cancer easily. He even provided an exact date and time when he would operate, with an assessment of how long I will take to recover under the different scenarios. The whole procedure will be done as a "Video-Assisted Thoracoscopic(VATS) resection or lobectomy". We were with him no longer than twenty minutes, after which he shooed us from the room to greet his next patients. The nurse in her turn then ejected a couple of people from an examination room to go through a little more detail. The room had only one chair which she insisted I took, so Ann had to sit on the examination table while the nurse knelt on the floor to go through everything.  

The day had started in a funny way when I received an email from a journal called Galaxies. Some while ago, I sent a new paper in to them for possible publication, but had heard nothing back. Today's email said the paper had been rejected, and I could see the reasons in the attachment. I sighed the usual disappointment, then read it more closely. A couple of weeks ago, I had reviewed a paper for them and advised rejection, and it was this paper that had been rejected by the second reviewer as well. So I still don't know the fate of my paper. Then I heard that a friend of mine from medical school days, Ann Carter, had died. She was a wonderful character, but had refused to enter a deep relationship with anyone. Years later, she told me the reason: her mother had died from Hutchinson's chorea, and she was frightened to marry in case she developed it and went like her mother. In those days there were no tests, but by the time tests came in, she was old enough to know she had not got it, and too old for children anyway, so she remained single. 

Then came the strange meeting at Papworth. We left in somewhat of a daze, without time to talk to each other or sit quietly to mull over the information. We went on to Edwin and Andre who provided a fine meal cooked by Edwin, and where I could take a Monkey Shoulder to unwind a little. Only later did we realise we had been presented with a fait accompli. We had not been given any opportunity to discuss alternatives (e.g. doing nothing, or the possibility of having chemo or radiotherapy). Somehow, despite the efficiency of it all and the fact that I would probably have opted for surgery anyway, we felt cheated and angry at the way it had been handled. Now I am busy with teleconference calls with the pharma company I work for (still earning pennies while I may), but I will try to contact the nurse later and ask why we had no preliminary consultation or discussion.


Friday, 24 September 2021

A date with Papworth

 Two days ago, I had another phone call from the consultant dermatologist. He's phoned personally so often now I feel he has become one of my friends - certainly no one else has phoned so frequently to ask how I am and give me updates on the treatment plan. I should have had a meeting with him next Monday, but he updated me about "the plan" and cancelled his meeting. Apparently Papworth will send me an appointment for Monday afternoon instead with a view to surgery (removal of part of the lung) and possible follow-up immunotherapy. Today the letter of confirmation arrived; I am to attend the Thoracic Surgeons Oncology Clinic next week to discuss it all. I am advised to take a relative (i.e. Ann) to help me understand what is discussed and to explain it to me. I am clearly being rated with the old and senile. It is strange but, despite my age and illness, I don't feel specifically infirm, and inside I still feel as young as I did 20 years ago; it is odd how the body image we hold of ourselves can so distort reality. But I will be glad to go and hear what they intend to do with me. As it's a thoracic surgery unit, I am guessing they will want to remove the diseased part of my lung. Good riddance, I say. Hopefully my irritating cough and the terrible itch I have will go with it.

The last of the antiques
Finally, the man called for the barometer. He had been intending to come for a few weeks, but never arrived. That is the last item of old furniture and projects from our time selling antiques in Clare. We enjoyed running the stall at the time, going to auctions and car boot sales, coming home with boxes of weird things to identify, pricing them up and occasionally discovering we'd bought an unsuspected bargain, but equally finding old duds that wouldn't sell at all. We never made much money, but the journey was fun and we learnt a lot, as well as meeting many interesting (and some less enjoyable) people.

We have had a bout of good weather, warm and sunny. I drove out this morning to fill up the car ready for the weekend and the hospital visit on Monday, but I was too late - the first garage had run out of diesel, and the second in Haverhill had queues half a mile long, so I will leave it till things quieten down a bit. The trouble is, this government has panicked people by saying there is a shortfall at the garages because of the shortage of transport drivers, so naturally everyone immediately wants to fill their cars driving the shortage even worse. It is a positive feedback loop of the worst kind. the papers have been publicising the shortfall of haulage drivers for months now, but this useless government has failed to heed the warning or bring in foreign drivers under emergency powers. Many supermarket shelves are empty, and with perceived fuel shortages and power cuts because of gas prices, they are building a perfect storm of discontent over the winter months. There will be riots in the streets at this rate, and added to the weak police response to nut-heads blocking the M25 and Dover port, the government are heading for major losses at the next election. It is unbelievable that Starmer is unable to land a blow even on a PM who must be reeling on the ropes.

Making the most of the sun, I managed to repaint the trim round the roof of our Dragoon Saloon, a job which has been hanging over me for a few weeks now. The old paint had peeled badly and was exposing bare wood, but now it should be good for winter.