Passing the piano

There is a piano at the top of the escalator, in Charing Cross and today we passed it six times.

We started by going to see Dr Savage and bombarding him with questions (things like "What were the results of the Xray?" from me and "Anything to stop me diving?" from Quent). I am not sure which questions Dr Savave prefers, but he answers them all with great patience and honesty.

The answers to the questions were as follows:

1. January's x-ray looked a bit better than December's, although this is not significant - it could just be that Quent breathed in a bit more or something. In spite of his warning not to read anything into it, I took great heart from it ... for half an hour or so.
2. No problem with going skiing and having a great time. Diving would probably not be a problem medically, but the insurance and the instructors would be unlikely to take Quent on.
3. We went through a list of "symptoms" that Quent has been showing. On top of the tiredness, night sweats, cold feet, clammy hands and a bit of coughing have all been registered on my symptometer - which is finely tuned to noticing any microscopic changes in Quent's demeanour. The doctor explained that with such "soft" symptoms, it is hard to tell if they are significant or not as they have many causes.
4. He also explained the cost of having sorafaneb or sunitinib privately (they are not available on the NHS) would be about £20,000 to £30,000. This should not be an issue as Quent has permanent health insurance through work, but it's good to know the facts.

We were then sent back past the piano for an X-ray and back again to bring the results to Dr Savage.

This was when I stopped being carried away with ideas of treatment being a year off and Quent showing improvements. The radiologist thinks there is a significant change in the spots on the right lung and that we should have a CT scan. Dr Savage said he couldn't really see it himself, so it's obviously not huge. He stressed it should not stop us having a good holiday, but sent us back past the piano (now complete with elderly player) to book a CT scan for our return (Thurs March 8th) . This will be approximately 3 months since the last one, so is about when we would have been having one anyway.

We then had to come back past the piano to book our appointment with Dr Savage for after the CT scan. And finally Quent stopped to thank the pianist for the tunes as we passed him to come home.

We each had a sobering moment during the consultation. Quent's was when Dr Savage stressed that Quent will never feel better than he does today. Mine was when Dr Savage pointed out that we can only count on two treatments - immunotherapy and sorafaneb / sunitinib. The vaccines and bone marrow transplants are very experimental. You therefore only get them if they happen to be doing a trial when you need them - and if you happen to meet their criteria for volunteers. That cut my perception of our odds, although you can bet that if we think a trial might help, no-one will fight harder than me to find one somewhere and get Quent accepted.

Joining the jet set

Firstly, thank you to everyone who joined in our "Quentin Day" on Wednesday. It was great to receive your emails and to read your blog comments - as well as to feel very loved all day Wednesday, in spite of the absence of my Valentine...

...Quent was in Germany last week, on a course he has been very keen to do for months and months. In fact, the very first thing he did when told he had a lump on his kidney was to put BACK his CT scan because it clashed with his course. He did see sense (helped by a couple of friends' expressive language), brought the scan forward again and was being operated on when the course happened. Suffice to say, he was pleased to be on the 2007 version and I was delighted for him too.

He returned to the UK looking tired, but better than I had expected (Thanks, no doubt, to the Quentin Day and a series of early nights in the hotel). As soon as he caught sight of Quent, Oakley dumped his scooter and nearly flew across the terminal into Quent's arms. There then followed a small battle for attention, with Oakley telling me at one point to "go downstairs and chat to yourself".

On Sunday, it's back to the airport again - we have booked a week's skiing holiday in Tignes, France. Apparently it's relatively "snowsure" and there's plenty to do in the centre, if Oakley doesn't take to the skiing.

But before that (tomorrow morning), it's back to the hospital to see Dr Savage.

Pray for a day

Some friends of ours have very kindly organised for a mass to be said for Quent this Wednesday at the London Oratory. Another friend said their village had organised a whole day of prayer for someone they knew and that it gave everyone a wonderful warm feeling. A third (more secular) friend said she would be happy to do a little lurve chant.

So, if you have a moment on Wednesday, please say a quick one for Quent.

(Obviously I realise 14th February is a busy day for many of you , but if you can tear yourselves away from the flower arranging for a minute or two, we would be very grateful.)

Quiet Quent

Quent started his 48th year as he has started most of the previous ones - by overdoing it! (No surprise there, then). That week (the week before last), he worked full time, went to a Scout Committee meeting, drove to Preston, ran Explorer Scouts, stayed up late with his brother, DJ-ed a party and did some DIY at a rental property. He enjoyed it all, but by Sunday he looked ill and exhausted. The night sweats, which were very severe before his operation, have started again.

To be fair, he had been looking and feeling so well, I think we all forgot we were mid-battle and let our hair down.

I certainly don't want to stop Quent doing all the things he loves, but his body is just about the only weapon we have in our fights against the pesky spots, so we have to look after it. Someone told me it is my job to set the ground-rules, as "Quent has no idea how to slow down". I think the term is tough love, but I am not feeling very tough at the moment so bossy love will have to do.

The new groundrules are as follows:

1. Aim for 65 to 70 hours' sleep a week. This last week, Quent stuck to this rule and is looking much better (helped by a very restful weekend with friends in Bath).
2. Get back to the good diet. It slipped over Christmas and between leftovers and birthdays, we still had cakes and snacks in the house in late January. This last week I have been juicing, chopping and blending and am now starting wholesome baking (sugar-, wheat-, dairy- free cakes).
3. 30 mins of gentle exercise (walking or swimming) at least 5 times a week.

Living a full and fun life is important for our other weapon, Quent's positive mental attitude. Trying to fit everything in will, at times, be a challenge. Quent is trying to work from home a couple of days a week, which should help as it will save 4-6 hours of driving.

We are hoping that the treatment will be easier to bear and the outcome more positive if he is as strong as possible before it starts. It's a bit like a marathon training programme, I guess. So far so good - he's now over 12 stone and the more he rests, the better he looks.