Pete's visit to Edinburgh 25th Feb 2015 for review with Z's oncologist

Introduction

I went over to Edinburgh for a day trip again today: the main reason was the scheduled review with Dr Sorcia Campbell, Zander's consultant oncologist, to discuss the findings of last week's MRI scan.
Zander had been doing well after the radiotherapy finished in late November, gradually getting more energy and a better appetite. He felt so good that two weeks ago he went curling two nights in a row - on the Monday and Tuesday in Kinross. Unfortunately, on the second night, he slipped on the ice and gave himself (and others) a bit of a fright. He was only bruised, but after that he seemed to go downhill quickly, stopping eating as much and spending more time in bed. His GP came out, said he was dehydrated, and he was admitted to hospital a week ago. They rehydrated him, treated him for the pneumonia that the bloods and xrays suggested, and they went ahead with his MRI scan last Friday. They decided to keep him in hospital as he has been much weaker, unable to walk more than twenty or thirty yards and inclined just to lie in bed as much as possible.

Breakfast

Before going to see him, after arriving in Edinburgh today, I went to Lennox St for a pleasant breakfast and coffee with Nadia and James. James is starting at Broughton High School in two weeks, probably studying biology, maths, english, PE and music. So we had plenty to chat about. I reckon he should do his darnedest to sit a Higher (or equivalent) in Russian - it'd be a stroll for him, but it isn't on the High School list, so not sure about this yet.

Electric bike

Anyway I then headed off to see Z in hospital - I went on Z's electric bike, and fell in love with it. What a marvellous way to whizz around: no parking hassles and no need to pedal hard up hills. The only problem was that i whizzed around so much that the battery eventually went flat and I had a long hard unassisted ride up Comely Bank Avenue at the end of the day!

Z in hospital

It was good to see Z - he was dressed smartly (I had thought he might be in pyjamas) and although he's very thin and a bit quieter than his usual self, he smiled a lot and was in good form. It was a long way from his ward in Royal Victoria to the Oncology Clinic in Western General so he sat into the wheel chair and I pushed him. I found myself wondering why not electric wheelchairs just like electric bikes for ageing children like me.

Appointment with oncologist

So we arrived just in time for the 11am appointment with Dr Campbell. It was good to see her again  - she has a reassuring, friendly, positive presence and we feel like we know her well, even though it was only the second visit to her.
First, she asked Z how he was - and he said "fine".
She asked him why he had been taken into hospital - he didn't know
Then she explained the results of the xrays and MRI scan:
1. His oesophagus is a bit bulkier in area which was treated with cancer.
2. There are some patchy changes in the bottom part of both of his lungs

She was honest with us: she is not sure how to interpret either of these findings.

1) The bulkiness of the oesophagus could be due to inflammation after the radiotherapy, in which case it is harmless and will settle down with time. We could confirm this by doing endoscopy but she is not keen to do this to Z when he is not so well. Her view is that we need to focus on getting him better, with good nutrition etc, then maybe do it later.

2) The changes in lungs could be pneumonitis but she was not definitive about this ( in fact, on reflection she said it is probably NOT this.... it is more likely that these are just Z's lungs - the changes are similar to what he had last summer. His lungs were worse last summer with a similar pattern: he probably has fluctuating changes linked to his smoking and repeated infections.

Dr Campbell then summarised her main concerns: Z has lost over 5kg in past month - this is rapid and significant weight loss - and also he is feeling very fatigued.

Some of this could be due to the residual effects of radiotherapy, some could due to infection (which is being treated) but some could be due to something else, and of course the ongoing worry is that this could be some manifestation of the cancer. Having said that, there is no evidence on xrays or scans of spread of the cancer in the chest or abdomen at the moment,  and these tests are sensitive to a couple of millimeters.

In some ways he is doing very well: his blood tests have improved since he started the antibiotics, with a reduced level of inflammatory markers etc.

So what is the plan?

He will see the dietitian in hospital to sort out his food and make sure that he is getting optimal nutrition. How long should he stay in hospital? She says at least until at least his weight has stabilised and his general energy levels have improved. He should focus on getting more active etc and eating well, physiotherapists, dieticians, occupational therapists,

Treatment at the moment

He is on a course of antibiotics (amoxycillin) plus prednisolone at 40mg daily reducing over weeks to 30, 20, 10, 5mg. This is an anti-inflammatory drug that should make him feel a bit better and a bit more hungry. If gets worse as the dose of prednisolone reduces, they may increase again.

Summary and conclusion

Dr Campbells's plan is to keep Z in hospital for about another 3 weeks, then to spend a week at home, then to come back for another review appointment (4 week from now i.e. Wednesday 25th March). I will book a flight to go over for the day again then.
If he gets worse in the meantime (especially if his swallowing gets worse), they will do the endoscope sooner. In general though, she feels that it's better to wait for a while before doing the endoscope so that it's more likely that any radiation effect will have settled.
Dr Maguire is the "care for the elderly" physician who is in charge in hospitalisation period.
Dr Baird is young female doctor who is in charge on the ward day to day.
So Z is under their care, in a bright, airy room, for the next three weeks, then we'll see.

B wasn't worried and Pete was dashing around.

The rest of the day was spent beetling around. I electric-cycled over to B, and she was tired but in good form. She smiled broadly when she saw me, and we chatted a bit. She said "Don't worry lovey" three times. (I think I might have been frowning!). I told her that it was her birthday soon and asked her how old she thought she'd be. "Thirty one?" she said questioningly. I told her it was quite a bit more than that, but I didn't dare tell her it was eighty!
I then tried to get Zander's mobile internet working but it's a bit trickier than I thought - I am working on it now with Nadia and we should sort it this weekend. Z is quite isolated without his emails etc and he will rapidly adapt to an iPad Mini once we get the internet connection sorted.
I was also looking at translation/interpreting work with Nadia - now that she knows Z will not be back for three weeks at least, she can plan to do a bit more with her time because she doesn't have to prepare meals for him etc.
So that's it. Apologies for the long report but I wanted to be as comprehensive as possible. Any questions? Just put a comment below and I'll get back to you.
Love to you all
P x