B & Z's Worldwide Family Blog: Pete's visit to Z in Edinburgh on Wednesday 25th March

I had another good visit to Edinburgh today. My ridiculously early flight (alarm set for 3.45am) meant that I was at Lennox Street by 9am, greeted at the door by Nadia. We had breakfast together, then Zander awoke and joined us. His own breakfast place had been beautifully laid out as usual by Nadia.
After breakfast, Z and myself had a short snooze before heading down to the Western General Cancer centre where we had an appointment with Dr Phillips at 10.30am. We have seen him before, and our visits seem to alternate between Dr Sorcia Campbell and himself: they both know Z's case well.
Dr Phillips started, as all consults seem to, by asking Z: “How have things been?”
Z was clear that there has not been much change “Very steady, have put on a tiny bit of weight (0.2kg, which is better than losing weight), sleeping a lot.”
He has gone from 62kg to 62.3kg, so this is pretty much unchanged.
He then talked about his appetite – "I have to make myself eat but I am managing - soup, moussaka, fruit, chocolate brownies"
He said that he had no difficulties swallowing but his energy levels are low – he's sleeping a lot – "12 hours at night, and 12 hours in the day time".
Z then asked the critical question: "Have I got a tumour or not?", and Dr Phillips explained:
The CT in January scan showed that there was thickening of of his gullet around the site of the tumour but this could have been caused by scarring after the radiation treatment. Even in patients that do well on radiotherapy, the gullet tends to look different on scan. Another scan is unlikely to tell whether or not some tumour tissue is there, and the only way to get more information is to do endoscopy and if necessary take biopsies. This is not the most pleasant of things to have done. Z had it done while conscious last time, but some have a general anaesthetic. If Z was very keen to find out exactly what's going on, endoscopy is better than a scan, because the scan finds it difficult to tell difference between tumour tissue and post-radiation scarring.
Dr Phillips felt that Z is now fit enough to have endoscopy but is aware that he has been a bit fragile recently and any test could be a bit traumatic, and could set off a reaction that is better avoided. It could be a bit like the fall on the ice after curling: it could set him back, and put him back into hospital for a while. Dr Phillips' gut feeling was that he would avoid a scan just now because it would be an imposition on Z and it would not change what should or could be done for him, especially as swallowing is not an issue for him. (If that was the case, then they would be more likely to do scan because they would want to work out the best way of dealing with it.)
At this stage, most of effect of radiotherapy should have passed. Z's ongoing tiredness is probably several things – radiotherapy, poor appetite, weight loss, having been in hospital. Blood tests showed that liver, kidney, thyroid were all fine so these are not causing tiredness. His haemoglobin was 12: slightly low but not low enough to cause symptoms.

Dr Phillips said that the main aim should be to optimise his nutrition.... and he suggested drinking full fat milk. A dietitian called out to see Z and Nadia last week and she also had some ideas: extra snacks in between meals etc. Another idea is that Z should see feed like medicine that needs to be taken rather than an option to take or not, depending on his appetite.
Z has been on prednisolone (steroid) tablets but these are just finishing off now. He did not feel that they made much difference to him, and Dr Phillips seems happy to let them stop.

The biggest concern is that it is nearly 4 months since the end of Z's radiotherapy and he is not yet back to normal. Generally after 6 – 10 weeks people improve in general well being and that lack of progress is a bit of concern. Frailty is an increasing issue too.

So that was it: the next check up with the oncology team will be in 7 weeks, on 13th May.