The oncologist speaks

Yesterday, we celebrated the end of the month sharing a fine, leisurely lunch with four friends. Today, in contrast, we were at Addenbrookes Hospital oncology clinic, where a pleasant young man explained the consequences of immunotherapy in great depth before getting me to sign on the dotted line. The specialist explained that the tumour they removed was about 1.5cm diameter, and had been there slowly growing for about two years, so it will almost certainly have seeded to other regions of my body. However, the recent scan was clear so there are no gross masses, and they will give a drug to stimulate my T-cells to fight any cancer cells they find. I am to be treated with a drug called Nivolumab, (trade name Opdivo). I thought the drug sounded familiar - when we looked it up, it is made by Ono Pharma, the very company I have been working with for three years. Nivolumab was called ONO-4538 during its development stage, and I am in the process of developing a modified drug called ONO-4685. So not only is Ono Pharma providing my livelihood, it may be prolonging my life. 

I am what is classified as BRAF negative, which is a form of melanoma less responsive to immunotherapy. Nevertheless, on balance the chances of surviving a bit longer are greater with the treatment than without it. I will have intravenous therapy every month for a year, preceded by blood tests to make sure it's not knocking out my thyroid, liver or pancreas. He thinks I will get the first dose in about a fortnight, so I will keep this blog posted re any side-effects or problems.

Edwin returns to the UK today. He let me know what flight he will be on so I can track him over the Atlantic on FlightRadar. He went to the US in good time; I read tonight that they may introduce mandatory isolation again for all visitors to the US in the near future, meaning family Christmas's will be out yet again for many people. This new variant should have been called xi if it followed the Greek alphabet strictly, but the WHO have refused to name a virus after the Chinese president Xi. They also decided to skip the letter nu in case the Americans confused it with some different "new" virus. So, two letters further on, it is called omicron. Although its presence seems to be increasing rapidly as it displaces the delta variant, it doesn't thus far seem any more dangerous in symptomatology, but governments around the world are panicking like mad and gleefully imposing more and more restrictions. At this rate, we'll all be facing repeat lockdowns and furloughs. Happy December!

We see Dune as a new variant emerges

Two neighbours down the road from us have only been here a couple of years, but have never settled in the village. They call it aloof and unfriendly, so they finally put their house on the market. It sold rapidly within three days, but alas the purchasers dropped out at the last minute, so they lost the house they wanted. They will put it on the market again in the New Year. We have never seen the house since it was a rectory occupied by Father Jeremy, but finally the present owners invited us in this morning for coffee. Then as we were about to go, they phoned to say the dog was ill. They couldn'd get in to their normal vets, so they were having to take it to Saffron Waldon and the coffee morning was cancelled.  

We saw Dune yesterday, but I need have had no fear that it would expose the ending before I reached it in the book. In fact, it didn't get anywhere near the end - they stopped it before the book was halfway through and had the nerve to call it Episode 1. It was the most tedious two hours fifty minutes I have experienced in cinema, filmed in dull sepia monochrome, with no focus as drawn=out battles and mayhem raged about the weakly drawn characters. Ann mentioned that she had lost three hours of her life she could never get back, but after the brilliance of the book I felt that more than time had been taken from me. I cannot recommend avoiding this film enough. I cannot believe they hope to make a followup Part 2.

Edwin and Andre at the Space Centre

Edwin continues his journey through the USA, going to Washington, then through Philadelphia into N. Carolina where they celebrated Thanksgiving in true Yankee style at a dinner for twenty people. The meal was held in the house of the parents of the fiancee of Andre's sister - if that's not too convoluted. They are strong Catholics and offered a prayer of thanks where each of them named something they were grateful for. Andre's parents are very strict house church. They will not drink alcohol or sing and disapprove of many accepted practices in the modern world. They also consider religious statures as idols, not allowing any images in their church. As they were leaving, the grandmother in the house gave them a present as a token of friendship between the two families. It was a gaudy statue of an angel. 

Now another variant of the Corona virus has emerged. It only emerged five days ago, but already we are being forced back into masks and potential lockdowns. This virus seems to have a life of its own, behaving like no other virus. Even such nasties as smallpox did not mutate and were eliminated with a vaccination program. Ebola, another highly contagious and fatal disease, can be controlled by isolation. But Covid mutates frequently, each variant seeming more potent than the last. It is not being contained by isolation or antiviral treatments, or the vaccination program. It is not good to talk conspiracy theories, but this virus is so completely nasty and untameable one feels that it was almost designed to be this way. 

Edwin and Andre will now have to take the full PCR tests on their return. They have to take it within two days; as Ann says, this will give them plenty of time to pass on any infection they've acquired, but the government don't seem to consider this. We just hope there are no cases in America before they return, or they may be subjected to full lockdown. 

Dune and driving again

 

Behind the Tiguan wheel

Finally I am back behind the wheel, after four weeks forced abstinence. The respiratory consultant had advised me not to drive for this time, but on checking it was a legal requirement, so I would not have been insured. My first trip was not romantic - it was to ferry Ann to the dentist, but we did take the dogs and I had a good walk with them by the river in Hadleigh while Ann suffered in the chair of doom. I always think hygienists are more sadistic in their treatments than the dentists. It is strange to be driving again; we have had the car for three weeks, and I feel that everyone has driven it but me. I couldn't even take it on its test drive when we bought it! But it is a lovely high car, and feels much more sturdy than the Jaguar, and far better suited to our rutted muddy Suffolk winter roads.

Edwin and Andre have managed to get to New York. This was a major achievement with the restrictions of Covid, but Edwin booked the tickets early having anticipated the reopening of USA to foreign visitors even before it was officially declared. This is an important trip for them as they will be holding a family gathering with Andre's family, presenting Edwin to his mother and father. Andre's sister Flavia and her fiancée will also be there, so it will be a grand reunion. 

Edwin in New York

On other news, I had my repeat whole body scan last week to check if the melanoma has spread its black wings further afield, and will see the oncologist next week to discuss future management. Lucy had mentioned that a friend from her childhood, Laura, also has metastatic melanoma and is receiving immunotherapy, therefore I made contact with Laura this week, first by email and then by phone. She is incredibly positive about a nasty condition, despite bad side effects from the immuno. Indeed, her positivity is inspirational and puts my moans about minor pain and breathlessness in perspective. Would the world could be so cheerfully brave. 

Ben gave me a new book a little while back called Dune. It was written a long time ago (1966), and was incredibly popular at the time, but I had never read it. Now I'm racing through it; it's extraordinary in its characterisation and depth of analysis of motivation and storyline. I haven't quite reached the end, but Ann and I are going to see to film version this afternoon so I will see how it plays out before I finally finish the book, for I'm a very slow reader.

Lucy and grandchildren visit, and I walk in the park again

Waiting to eat at the Baltic Amber

Yesterday, Lucy and two of the grandchildren visited after the long journey from Hartlepool. Ann had her booster jab booked for mid-afternoon in Haverhill town centre, so we timed the meal together for after that, going on to the Baltic Amber for a late lunch/early dinner. It is themed as its name suggests on Latvia and the Baltic coast, having been set up by Latvians. It was due to open just as the pandemic hit, so we (and probably no one else) got into it for some months, but we've made up for that time by going on several occasions since. They have an extensive menu including local Baltic dishes, all tastily cooked and well presented, with good cheerful service. The only minor complaint is that the meals are too big - not one of us could finish. For example, Ann had ordered a bread stick starter which came in a large iron pot: almost a full loaf covered in molten cheese and truly delicious, but even with four of us tucking in, half the pot was left. 

It was really good to see them all though, and I think they might have stayed on but Lucy had to get back to relieve Andy of their youngest, Theo, so Andy could get to his golf match. Perhaps next time we will persuade them to stay over. The two grandchildren are delightful now, and a pleasure to have around. Some time ago, Lucia used to come with me to Clare to walk the dogs; perhaps when they come again I will be able to drive once more, and we can walk again together. 

Carved kingfisher in Clare

Habitually on Sunday I used to drive early to Clare to collect the paper and walk the dogs while the park was quiet. Today, Ann had to take me. She walked up to the Coop to get the paper and some shopping whilst I walked the dogs on the circular river walk. It was lovely to be out with them again, and I completed the walk well without getting breathless of having to stop, so I think that is a measure of improvement. I walked up to the town centre to meet Ann, noting that the Warehouse saleroom was closed and thinking Ann would be pleased as she wouldn't need to meet Chris the owner when she walked back to the car. He is a generally pleasant Irish man, given to occasional moody sulks, but also very garrulous making it hard to get away, and Ann generally tries to avoid him. I got to the tearoom upstairs where we'd arranged to meet, and there was Ann sitting next to Chris and his wife. They had been there when she arrived, so she couldn't ignore them and go back down, but had to wear a smiley face and welcome me to say hello also. I managed not to laugh or make some sarky comment, keeping a straight face as I greeted them, but later, over the coffee and cinnamon bun, we both grinned as I knew what Ann was thinking.

A touch of optimism as I make progress

 Things are progressing with my recovery. Today I had the last of my anticoagulant injections; they came in a large box of ready-filled syringes and Ann has been giving them religiously each evening. Yesterday I attended the local Clare surgery to have the purse drawstring stitch removed. The surgery has become a surreal experience. We have to give our names at the door and no one is allowed in without an appointment. A large notice above reception proclaims: "Due to Covid, the receptionists cannot offer advice or take appointments directly. Patients can only communicate with them by phone, and then only after a long process of filling out online questionnaires. The surgery was deserted. There were only four seats spread in each corner of the old waiting room, but no one was waiting. No one came out from the nurse before me and no one was waiting when I left. Normally, there were two or even three doctors working and a nurse and health visitor and three or four receptionists. Now even the phone didn't ring during my brief time, and on the way out the two doctors' doors were open, the surgeries deserted. But for the solitary receptionist and nurse, I saw no one.

This week too, the melanoma nurse at Addenbrookes finally phoned. She told me the team had held a meeting to discuss my case. They have requested a repeat whole-body CAT scan to confirm there are no more obvious metastases, and the oncologist will arrange a meeting after that to discuss possible immunotherapy. As Ann says, this is very positive. I will finally be able to ask them about my prognosis, and find out what I face with further treatment. The scan and immunotherapy are both expensive procedures, and they would not offer them if they thought there would be no benefit, so this all suggests that hope lies ahead.

Today our friends Rae and Malcolm came round to take us out to lunch. While I am unable to drive (I'm half way through my ban - another two weeks to go before I can even try my new car), Ann is having to drive us everywhere so she is usually unable to drink when we go out, so this was a rare chance for her to share a bottle of wine with Rae. We went to The Plough where I enjoyed a delicious mushroom and stilton burger, followed by a crumble and custard. I'm definitely getting my appetite back, so that's another good sign. 

I almost fall into trouble

This morning, Ann drove us to the Sudbury Garden Centre for a coffee and cake. It was good to get out, but we couldn't take the dogs in Ann's car so I walked them a short way in the field opposite. I have mentioned before Byron's instinct for balls and his knack in finding them. Some time ago, he found a football which he enjoys running round the field with. I had kicked it into the hedge before I went into hospital, but he remembered exactly where it was so made a beeline for it. He goes for a long run with the thing hanging from mouth, then brings it up and rolls it with his nose towards me to kick. The ball does not go far with my kicks, but Byron cares not - he still catches it and runs half round the field before bringing it back for a repeat performance. So though I can't walk far or fast, he still is getting lots of excercise. When we finally leave the field, I kick it back down the hole in the hedge. I know he will remember and go straight to it tomorrow.

I regret I have developed a nervous disposition as I have aged, and always jump when the dogs bark. After a spell in the studio working on my new portrait, I made Ann and myself a hot drink and was carrying them in when the back doorbell rang. Byron barked loudly as he rushed past, and I jumped so violently I almost emptied both cups over the floor. Going to the door, a young girl was delivering a parcel. I always stack too many things in my car, and Ann had emptied it ready for selling on Monday, so boxes and bags littered the lobby. Being a clumsy guy who doesn't look where he's going, I tripped over one of the bags and shot forward through the door, almost falling on the girl with the parcel. Happily, disaster was averted as I grabbed the door frame, otherwise I might be writing this blog from the Haverhill police cell.

We head to Waitrose and buy a new car

Our new car

Today, we bought a car. We hadn't intended to. Indeed, we had set off  for Sudbury just to get some shopping from Waitrose and walk the dogs, but Ann had read that Suffolk Trade Centre had a VW Tiguan newly in, and wanted to see what it looked like. 

My own car had been damaged before I went into hospital. I have no recollection of scraping it, but it had a graze across the front wing so we took it to our local guru, Terry, for assessment of the repair. He came out laughing, "here again?" Yes, I have used his services several times, but this time I have no memory of damaging it. He agreed, someone else may have done it in the car park. Very common, he said. He assessed it as 3 days work, but said he'd better add a couple of days in case there was extra work by the time we brought it in. As we left, he said he ought to book a week aside every month to allow me to come in regularly. But he did offer a good price, probably discounted for repeat orders. 

We walked round  the Tiguan and it looked clean enough and of a right size, so we said we'd just get the keys and look at the inside. Nice leather seats, automatic and, though much smaller than the Jag, room enough for two dogs in the boot. Duncan, whom we've known for many years, came over and said, why didn't we take it for a spin? So we thought, why not? I am banned from driving for 4 weeks following my operation, so Ann drove. It is certainly smooth, and holds the road well. Importantly, it is much higher than the Jag, so much easier to get in or out of. These days, I sink down in the low Jag seat, and my weak legs struggle to get out again, but with the Tiguan I can just slide out. 

Being unable to drive for the four weeks, I had been intending to get the car tarted up by Terry and get a quote from We Buy Any Car to get the money quickly and give us time to look for a new car. But we thought, there's no harm in getting Duncan to give us a quote. So he did, and it matched the top end of what we thought we might get, and he said he'd take it as it was, scratches and dog hair included! Such is his despair to obtain new stock in this rare time of second-hand car famine, he even ignored the scuffed alloy wheel and the scratches over the boot back where the dogs scramble for purchase when they jump in. We shook hands on it, and we can pick it up on Monday. It was then too late for Waitrose, and Ann didn't want to drive it any further anyway in case it acquired a new scratch. So we simply went home having bought a new car.

I have started to prepare canvases for my new portraits. They are primed with gesso, ready to sketch the outlines. I used my new full-size easel. It is very thin and rickety, but it managed to support the large canvases enough to prepare them.

Today also, our friends Rae and Malcolm came for morning coffee and cake. Yesterday, Ann cooked the four Christmas cakes. She does four because it has become a tradition to do one for us and three for others such as Mary-Anne and the boys. Later, I will marzipan and ice them, but we let each recipient do their own final decorations. There was cake mixture left over, so Ann made a small loaf cake, and that is what we sampled. Her Christmas cake mix is one of the richest it is possible to bake; any more fruit and it would be a fruit pudding. Also, she soaks it in as much brandy as it will absorb, so the coffee and cake morning was a great delight.