Return to normality

We've been home for two weeks now and are enjoying that "home for a couple of months" feeling. Quent is sleeping lots (though maybe a bit less than usual) and itching lots. He is very thin and his skin is still bright red and itchy-peely. He had terrible toothache last week as the gums seem to take a bashing as well as the skin. Fortunately, that's sorted now. Still, we've had no medical emergencies and haven't been near a hospital for two whole weeks. Bliss. I'm sure it'll take the usual time for Quent to recover fully, but we are old hands at that now. Sleep, food, sleep, food, sleep, food.

Oakley is being totally delightful - chirpy and sunny and just lovely to be around. Quent took him to Legoland last week for a couple of hours while I went to a meeting and they both returned happy but exhausted. I have been working hard for once - time to get back to it, now My "hospital assistant" excuse is running thin and the bank balance is even thinner.

Quent has had a letter from the Ward Manager saying what a great chap he is and how everyone enjoyed treating him. Prof Hawkins has also written saying how pleased they were to get so much thanks. And we've had an email from one of the nurses, saying they've had soooo many lovely cards from our friends and family. Thanks again to everyone who sent them. Apparently the Ward Manager was going to take them all to the Board Meeting.

Our next medical appointment is not till late July, when we return to Manchester for a scan and a meeting with the surgeon.

6 years on...

On 8th June 2002, many of you helped us celebrate our wedding at Fawley Court. Six years on, we are having a rather quieter day at home. Oakley has just gone out to play and lunch (thanks, Camilla!) and we are going straight back to bed - although not in the traditional wedding anniversary kind of way!

In the early days of treatment, I tried not to organise too much for Oakley the week we came home, thinking he would want to be with us. I quickly realised this was more our interpretation than his. Today I got a really lovely "Thank you, Mummy, for letting me have a playdate" (the "rather than hanging around with you two exhausted old fogeys" was unsaid but we knew what he meant).

We've had six wonderful years of marriage and now we have years more ahead of us. Who could ask for a better present?

No more IL-2

We've finished. The nurses are pretty sure 65 doses is a record - and also say that Quent has had the worst reactions they've ever seen.

Quentin had a sleep this afternoon and I went to John Lewis to get some presents for the nurses. I started crying almost as soon as I left the hospital - I guess it was relief. I think the shop assistant was a little surprised that buying handcream could be so emotional. On reflection, so was I.

Quent is still feeling as if he's been run over by a truck, but we are both delighted to be through it all safely and successfully. One more little lung operation (!) and we can really start to party.

Really nearly there.

Thanks to everyone who has sent cards. The post hasn't arrived yet, but I know the nurses will be delighted. Please pass on the word to non blog readers.


Doses 4 and 5 went reasonably smoothly, although Quent is pretty weak. He has sickness and diarrhoea, thrush, sore joints, swelling and blotchy bruises all over. He can barely move his arms - a side effect of the blood pressure cuff rather than the IL-2 itself.

Quent has hit 65 (doses) and is going to retire. We are waiting to tell the Prof - who may well try to persuade Quent to go for another, given this is only the beginning of day 4. Superstition - and memories of Neil Kinnock - prevent me from counting our chickens too early. More later.

Help required, preferably today.

Quent has just rigored after his fourth dose. We had a pleasant day yesterday after a fairly straightforward second dose. Quent slept quite a bit but seemed much better than he had been on Tuesday.

Last night he had dose 3 at around 6.30pm and at 10.30pm, everything went a bit awry. His SATS fell and wouldn't come back up. His blood pressure remained at about 70 for hours. His heart rate was pretty high and, most worryingly, he lost vision. We played the usual game of "How many medical staff can you fit in a bedroom?" and it was comforting to see everyone pulling together to pull him through. I admit I was scared. When the Critical Care Nurse asked Quent if he was OK, he just said "No", which is pretty different to his usual "I'm great" or "Life couldn't be better".

Anyway, his vision returned reasonably quickly, as did his humour. "Did I miss the Apprentice?" he quipped, right in the middle of it all. He is amazing.

As are the nurses and doctors. We were saying yesterday that we just can't begin to thank them enough. Then I had an idea. Would you help us thank them? (Bear with me. I know I sound like a kid's party entertainer) If everyone who is grateful they have saved Quent's life sent them a postcard or card, they would really see what a difference their work makes.

If you are up for it, please send a postcard thanking them for saving Quent's life and maybe stating your relationship to him. It doesn't have to be more than a sentence. The volume of cards and postcards will make the impact.

Please address it to The Nurses and Doctors of Nathan House, Christie's Hospital, Wilmslow Road, Manchester, M20 4BX.

Sorry not to give you more notice. I am hoping you can all spare 10 mins or so to stick something in the post asap. If you really can't get to it, pls post a message on the blog instead - but the real thing will make much more impact and give them a fantastic vote of thanks.

Crashing the car - again!

So, here we are in Christie's for the last week of IL-2. Thank goodness for that. Even Oakley was jumping up and down and telling Quent it was the last lot, before we set off. Needless to say, we hadn't told him that but he must have overheard someone saying it to us - or vice versa.

The excitement of the finish is marred by the struggle of the final stretch. Marathon runners will understand, no doubt. I feel churlish saying I can't be excited yet, when we know it's nearly over and that it has given Quent his life back. The only way I can explain it, is like a car crash. Every time we come (in fact pretty much every dose!) is like getting into a car knowing it will crash and Quent will be hurt. We know he'll almost certainly pull through and his injuries will heal quickly, but we also know that it's very tough and the second week's crashes are worse than the first. Watching Quent get back into the car ready for his 61st crash is very hard.

Last night's prang was eventful. We have already had the nurse practitioner round - and the portable ECG machine. I feel we've phoned a friend and done 50/50 in the early stages of the game. Still, eventually Quent settled and he's now sleeping after his second dose & rigor. His urine output is minimal - as it was this time last round. So, we will see how we go. Everyone is saying not to push it too hard - even the Boy Racer Prof.

Once upon a time in the North

Oakley went to a cowboy party yesterday. He had a particularly large breakfast as he said he needed extra energy. I didn't actually realise it was possible for 4 year old boys to get any more energetic, but he seemed adamant. He then put together his costume, including water pistol and plastic video camera posing as guns. I told him I didn't think cowboys carried teddies. "Mu-um," he replied, his voice heavy with disdain, "That's my cattle." See below for the full effect, including brooding look and "cattle" under his right arm.

He had a great time and came out with a Power Rangers face. It was all very different in John Wayne's day.

We are off to Manchester tomorrow, ready to start treatment on Tuesday. Quent is very calm about it all, but I shall be grilling the Prof on the relationship between IL-2 and blood clots. We know they aren't cowboys at Christie's but I still have a few questions for The (re)Searchers.