A Final Stop Over?

You may recall a bedraggled Odysseus being discovered by Nausicaa on the shore of her island home of Scheria. Having cleaned him up, she then took him to meet her Mum and Dad, as well bred ancient Greek girls did if they met a stranger they rather fancied. Mum and Dad turned out to be Queen Arete and King Alcinous, the rulers of the Phaeacians who inhabited Scheria. It's always nice to be discovered by a princess, especially when her parents take the Greek custom of xenia or hospitality very seriously. It beats meeting hungry giants.

Here is Odysseus, now rather nicely turned out, being introduced to Queen Arete and King Alcinous, though he seems to be getting a bit fresh with a sceptical looking Queen. Homer doesn't mention that he had a thing about knee caps, but the Greeks regarded grasping a host's knees as a gesture of supplication so we should probably give him the benefit of the doubt. Dad looks on rather disconcertedly, as do the disapproving courtiers. Just as well for Odysseus that they took the rules of hospitality so seriously, or he could have been out on his ear.

It turned out to be his last and best stop-over before reaching Ithaca. Unlike some of his previous hostesses, Nausicaa wasn't a witch (which is always a good start) and the Phaeacians did not try to eat him or even attack him. There was indeed much feasting as he told them the story of his journey so far, after which Alcinous gave him one of his best ships crewed by some of his best men to take him home to Ithaca.

I am hoping I might have finally found my own last stop-over on the road home in the form of the current treatment. It should get my own T-cells to do the job they might already have done of their own accord, rather than being fooled into passivity. It will send them in to attack the cancer cells.

Round one began on December 23rd, and so dominated Christmas. They let me out on the 28th, only to bring me back in for round two on the 31st. I am now getting used to spending Christmas and New Year in hospital surrounded by nurses wearing reindeer hats. It could be worse. At least I am spared re-runs of Bing Crosby and White Christmas.

They monitored me carefully for side effects in the form of CRS. That manifests itself as a high temperature and I had a series of temperature spikes. Those were quickly dealt with by a combination of paracetamol and sleep, but they still wanted to keep an eye on me and so I did not get out for ten days. By this time a pattern had emerged: no reaction at first, then a high temperature after 48 hours which goes back down and recurs with less severity every few days after that. It can be dealt with at home.

The third round was due on January 28th, this time as a day patient. I was therefore rather disconcerted when I got a message admittting me as an inpatient with a bed on a ward. I had booked appointments all around that day, including one with an important client, and I could not stay in hospital. I called and sent messages to say it must be some mistake but nothing happened until I got through to one of my nursing specialists on her personal e-mail. She was as surpised as I had been. It turned out that there was no room on the day unit, so they had booked me in to a ward instead. The treatment would still only be for one day. So it was, and I walked free on time. I've just had the usual side effects, but nothing paracetamol can't handle. They have now booked me in for a PET scan, which should show if the treatment is working or not.

The general symptom which gets me down more than anything is the loud, hacking cough which has been with me for the best part of two years and seems to be getting worse. I decided that the problem is some kind of chest infection which is independent of the lymphoma and needs to be treated as such. I was promised a referral to the Brompton which is right next door to the Marsden and a leading respiratory centre. Nothing happened for a month, so I went private. The consultant thought it could bronchiectasis but wanted to check through all the scans carried out in the Marsden before forming a proper hypothesis and would get his PA to access them. I told him he'd be lucky. Ten days later he had managed to get one, and has now passed me on to a colleague at the Brompton who is specialised in this area. I will see him next week.

I have learned two things about the medical profession. The first is that the NHS is great at treating something when they know what it is, but they are deeply siloed. The Marsden is interested in cancer and nothing else. I have some growing tooth decay which my dentist wants to tackle as soon as possible. The oncologists have forbidden me to do anything about it until the treatment is over. No-one can give me a coherent explanation as to why, except some dark mutterings about infection risk. If we do nothing for long enough it will turn into an abcess. Then the infection will be real and severe. My dentist and I are not giving up yet.

The second thing is that the only way to break out of the silos is to find an experienced private consultant. All my treatment has been done on the NHS, but I have medical slush fund for private consultations. I use them primarily for diagnosis and to make sure I am seeing the right people. I strongly recommend this. Getting the silos to communicate with each other does not work. They have different IT systems and do not understand each other's specialities. You have to get out of the silo you are in and start again with a fresh entry point. That will then become a silo of its own, so you have to be ready to jump from one to another.

The NHS is not the only UK institution to suffer from dysfunction. One of the arrangements we had made around the 28th was to see the much-lauded production of Turandot at the Royal Opera House on the 27th. After some impressive stage work and some stunning singing in the first two Acts there was a long pause before Act 3. Then a woman came round the curtain and announced that the tenor, the estimed Roberto Alagna, was unable to complete the performance. As we waited to hear who the understudy was, she disappeared and then came back and told an astonished audience that the tenor part would be sung from the wings by the ROH musical director, who was not a professional opera singer, and that the final act would begin after ''Nessun dorma", which of course was what everyone had been waiting for. Maybe the understudy had gone home. There was a near riot. I felt that what to come was likely to be embarrassing, so we left. It was in the papers the next day. They will give us half our money back.

If the glofitamab doesn't work I will not get a refund because I haven't spent anything, but ther will need to be a Plan B. If it does work, I will be on one of Alcinous' ships and on the way home. We shall see.