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.



Monday, 20 September 2021

The garden is cleared and the crane arises

 We enjoyed the company of son Ben and his partner Kaz over the weekend. They are always a pleasure, entertaining and enlivening our day. Ben and I retired relatively early, leaving the two women to talk, a rare welcome chance for Ann to share her mind and worries with a female companion. Besides bringing good company, Ben was especially useful, mowing the front and back lawns for us. These lawns are a great challenge, as we have had a succession of gardeners who promise to come every fortnight, mow them once, then leave in despair, never to return. The problem is their erratic nature (the lawns, not the gardeners). We have a random array of trees and bushes on the back lawn, and multiple fruit trees on the front that have overgrown till their branches are meshing together. Even worse, as a result of neglect, the grass had grown excessively long and was hard to plough through, but Ben tackled it gallantly and brought it back into submission. 

My crane grows legs

Matthew has now moved north with Rosie and baby Arwen to live with his mother. Once complication is that they have a cat, a large tom called Beamax but their mother also has a cat, already minus one ear from fighting. Thus far they have not dared let their cat out of the bedroom, so it will be interesting to hear how they mix when finally they meet whisker to whisker in a dark hallway. 

I have returned to creating my crane to the point of fixing it with legs manufactured from the arms of an old television aerial. It is now about ready for painting. Not yet sure how I will mount the bird, but hopefully inspiration will strike when the need arises. 

Friday, 17 September 2021

A good clear out

 Good news yesterday. I had waited all day for news from the medical team at Addenbrookes, who were meeting that morning to discuss my case. Finally at 5pm, when I had assumed I would not hear that day, the consultant at West Suffolk phoned in person to tell me what had been discussed: the PET scan last week, looking for any secondary spread from the lung, was clear. This was a huge relief. Until then, I kept wondering with every ache in my body if the cancer had spread to some new part. Now I must just wait for the appointment to discuss what they will do to manage the lung lesion. Possible excision of that part of the lung is one possibility, which itself is not a happy prospect, but much better than being told the thing is inoperable. 

Edwin too has had some good news: because of the dearth of openings as an academic lecturer, he has been sending off job applications for a whole range of alternatives to see if anything will turn up. He has now been offered a job as Post-Grad careers advisor which he may accept, but also has another interview as Conference Organiser for Wolfson College in the University of Cambridge, where the majority of students are postgraduates. His future is beginning to open up, and its direction will soon become clearer.

The old grandfather

We have now cleared out the garage, a monumental task for which we sought professional help. A woman with a van came to help Ann go through everything and threw it all on a large open truck. Some she will keep or give to friends; other bits will go to the charity shops (though she agrees they aren't taking much at the moment) and some will have to go for recycling or to the tip. Her total charge was not much more than skip hire, so she was well worth having. Also, Ann advertised all the old clocks on the Hundon Facebook page free for collectors - they were snapped up, especially the old grandfather clock. I had bought it with the best of intentions to get it going, but like so much else in my life it came to nothing. The only thing that has not gone is an old barometer. Someone promised to come tonight, but never turned up. Good cars are so scarce at the moment, a knock-on effect from a shortage of chips from the Far East inhibiting new car production, that Ann has gone with Edwin to Lichfield today to pick up his new car. 

Last night I had one of my worse nights, awake for long periods with coughing that nothing seemed to ease. I felt as though I were clearing my insides out, in sympathy with the garage. Even though I came down for a couple of hours, I so disturbed Ann she suffered equally with me. She thinks she will sleep all the way to Lichfield.