Frequently asked Questions

Quent has just been called upstairs by Oakley, who has five questions for him. Poor Quent. He could be gone some time... The other day Oakley padded downstairs, having been put to bed some time earlier (fortunately a rare occurance).

Oakley: "Mummy, why is it twaditional for gwown ups to go to bed later than childwen?"
Me: Burbling answer about growing, energy levels etc. but avoiding the key point about peace and quiet.
Quent: "I have a question for you. What are you doing down here?"
Oakley: "I have two questions, Daddy."
Quent: "OK. What is the second question, then?"
Oakley: "Who built the world, because it can't be builders, because they live on it."
Quent: Much more impressive (and long) two-fold answer covering off religion and evolution. I didn't hear all of it. I had to leave the room when Oakley said "whoah, Dad" and challenged some bit about explosions and gases.

News from the Prof

The Prof has texted us to say that although there is no official report yet, he has spoken to the Pathologist. The lesion was indeed a tumour and it's a good job we had it removed. There was also quite a bit of inflammation - which indicates that Quent's immune system had recognised it and was trying to fight it; a good thing.

They are growing the cells and doing more research stain on the tumour to try to understand why it did not disappear. We won't have the results of that for a few weeks yet, so nothing more to do for the moment than continue the recovery - still going well - and enjoy the hospital free time.

Front page news

Kidney cancer is in the news a lot at the moment. This week, NICE has decided not to fund four drugs for patients with advanced kidney cancer. Today, 25 cancer specialists (including Prof Hawkins and Prof Gore) have written a letter criticising Nice's decision.

http://www.timesonline.co.uk/tol/comment/letters/article4597132.ece

The drugs include those Quent would probably need if he requires further treatment. We may be lucky, given his private medical care, but it does make me very sad, thinking of others in our situation being turned away by the NHS. I can just imagine how desperate they must feel - knowing there is hope, but not being able to access it. It's ironic that there is so much great research going on in Britain, but the UK lags Europe in using the drugs for treatment.

On a more cheerful note, we've been home nearly a week and Quent is doing very well, building up his strength with little walks each day. We even went out for lunch yesterday and his stamina was amazing. He is of course impatient to "do" things, but I am being strict. He's rebuilt my PC while sofa-bound and is even attempting a bit of admin - a surefire way to ensure a relapse. If you get a thank you note for your Odyssey donation, you'll know it won over the tax return - but don't hold your breath on either. (Whilst I am on the subject, many apologies we haven't written to thank you all individually. If it really is "the thought that counts", then we are fine - the intention has certainly been there. If, however, as I suspect, the actual note counts for something, we are in trouble.)

We are still waiting for the results from the pathology lab. The Prof has said he'll chase it this week. When he's not challenging government policy, he's running round after us. He was going to visit Quent at the Alexandra on Monday, till I emailed him we were already home. He's an amazing man.

A weak link to some results we have heard this week - and an even weaker link back to topical news stories. I don't usually use the blog for personal messages, but 12 A* GCSEs is definitely worth an exception. Congratulations, Emily Iredale.

Heading home!

Less than 48 hours after going to theatre, Quent was discharged. We will go back to London tomorrow, but for the moment we are enjoying R&R at Anita's. We could get used to this.

There was one hiccough while Quent was in ITU. His drip had a dodgy valve and when the bag ran out, it didn't stop pumping. He spotted a pipe full of air just in time and switched off the tap in his hand. The nurses couldn't understand it until Quent pointed out the valve must be faulty. He has always been rather particular about air bubbles (as Nathan House nurses will testify!) and now I know why.

A walk in the park

I could hardly believe my eyes when I arrived at the hospital this morning. Quent was sitting in a chair with a huge grin on his face. No oxygen mask, no morphine or saline drips. He had had a cooked breakfast and was playing with his new toy - a breathing exercise thing. He was on level 4 already and looked very disappointed when I managed the same level.

By mid morning they had removed his chest drain and kicked him out of ITU. He walked down to the ward and we spent the day watching the Olympics. All being well, he'll be coming out tomorrow - although the surgeon did stress that he needs quite a few weeks' recovery and won't be fully back to strength for three months. Apparently, today may have been a "honeymoon" and Quent might find it a lot tougher, physically and emotionally over the next few days. We will not attempt the drive back down to London tomorrow, but may come as far as Anita's.

Quent kept telling my mum last week that the operation would be a walk in the park. I wouldn't be surprised if he is able to do just that in a few days' time. Bolt's family aren't the only ones feeling very proud this evening.

Through the keyhole

The operation has gone well. They have taken out a slice of Quent's lung, complete with tumour, half of which was immediately given to Prof's research team for analysis. They managed to do it keyhole and it took about 2 hours all told.

It was actually the second slice they took - they missed the tumour with the first one, apparently, but Mr Jones, the surgeon, assures me that this is not a problem. If you're trying to imagine how this all works, I think it's pretty similar to an exploding pie chart on an excel spreadsheet. (I might be over simplifying cardiothoracic surgery a little here.)

Quent is now on ITU and was snoring loudly when I left. He was awake enough to smile and crack a few jokes ("Where's the kango hammer?" amongst others), but he was basically very drowsy - and surrounded by monitors, drips, drugs, drains etc. Not really my scene, but it was lovely to see him smile when he realised I was there.

I snuck off this evening to celebrate the end of a long week with Anita and Helen Randle - a few tapas, a couple of glasses of wine, a good girlie natter and I am now ready for my bed. For the first time since Quent was diagnosed (and probably several years before that), his body is clear of tumours. Hallelujah and thank you - you've got us this far.

I will be in the hospital all day tomorrow, with no internet access or mobile phone coverage on the intensive care ward. But I will post again tomorrow, hopefully with even more positive news.

Shoes and autre shoes

We woke up last Saturday morning (having got home from Manchester at gone midnight) and decided to grab a quick holiday while we could. We rebooked our ferry crossing for Sunday morning and set to, cancelling our commitments for the week (don't 4 year olds have busy diaries!) and unpacking, washing and repacking our things. We've had our money's worth from those suitcases!

We had a great week with my parents in Normandy. The forecast was terrible but the actual weather was great. We had 7 days of sun, sea, sand, great food, wine, rest and lie ins. Perfect.

This week has not been quite as jolly. We headed north yesterday afternoon, after my dentist's appointment. This morning we are in Skipton for my godmother's funeral and this afternoon we check into the Alexandra hospital in Manchester for Quent's op, which is at 2pm tomorrow. Once again, I will trouble you for your positive vibes.

We did manage to fit in a bit of shopping before we headed north and I have to share it with the girls out there. I thought I knew a thing or two about buying shoes, until I went out with Oakley. Apparently, the way to choose your shoes is not the fit (as our mothers thought) or the look (as we think), but the sound. Oakley found the noisiest shoes in the shop and declared emphatically "These are the ones". So please, ladies, check the sound before splashing out on your next pair of Manolos. Pump up the volume (groan!).

More tomorrow.

All in a roll of the dice.

We had been climbing the higher rungs of the snakes and ladders of life, but we've hit a snake.

The unknown, "probably incidental" spot remaining in Quent's lung is growing and hence almost certainly malignant. We have agreed with the surgeon to have it removed asap - ie. the week after next. (The op had been planned for early September.) The Prof and surgeon can't see any new spots, but we are still waiting for the official report from the radiologist.

This came as a body blow for both Quent and myself - we thought we had the cancer on the run and now it turns out the interleuken 2 has only given us a partial (though very good) response. The chance of other spots appearing is now greater.

Getting the last spot out is the priority of course and let's hope that's that. Worrying about the future has not been our approach to date. So, in the spirit of positive thinking, let's hope this snake is a tiny little grass snake that lands us right next to a very tall ladder.