My husband's no clot

Episode two (see episode one below)..

Quent slept well in hospital. I slept badly at home. Quent was still very grumpy. Frances had been right. They were threatening to keep him in all weekend, ready for a scan on Monday. Quent was threatening to discharge himself.

By mid-morning, Oakley and I decided to go and visit him even though he'd asked us not to. Oakley felt sure he needed an ice-cream. I thought his MP3 collection might improve his patience. The ice-cream was melting fast by the time we found him. Quent was out of bed and answered "I'm not going to be here long enough for that" to everything I asked him. But, good news - they had done the scan. We just needed the results and we could go (with or without drugs, depending on the answer).

The nurse was less than helpful. She glared at Oakley and told him he wasn't allowed to sit on the bed. Given he's just four, was being as good as gold and there was no chair anyway, this seemed rather harsh. Maybe she could go on that learn-to-smile course. She didn't seem to know what was happening with Quent and she certainly didn't seem about to find out.

And then, just when I thought Quent was really going to lose it, Dr Savage appeared. We don't know which Doctor was meant to be looking after Quentin, but we were again very glad to have friends in high places popping in to see us. He checked the scan (which was clear) and sent us home. We still don't know what the pain was, but thankfully it's not a blood clot.

This evening, Quent is still tired. He also seems to be feeling rather cold. But he has no pains in his side - or none he's going to admit to me, anyway! ;o)

Hospital and unhappy

If this were a film, the next scene would start with "Just a few hours later" typed over the top... and the running time would be long, so get yourself a cuppa. When I typed "I don't have much to report", it really wasn't a request for an adventure.

Quent was restless on Thursday night / Friday morning, but that's pretty normal less than a week after leaving Christie's. At around 4am he came back to bed and I was aware of him breathing very strangely next to me. He had sharp pains down his right side and said he thought he must have bruised his ribs. Given he's hardly been out of either his own or a hospital bed in the last few weeks and he was finding it hard to breathe, I thought that was unlikely.

He wouldn't let me call anyone, but instead had a cup of tea and two paracetamol. We agreed to see what happened once the paracetamol kicked in and take it from there. He promptly fell asleep and slept soundly - without moving - for the rest of the night. I didn't. Most of the time I lay in bed worrying. But my imagination wasn't the only thing running away with me. Several times I jogged round the bed to check Quent's breathing (sticking my finger under his nose as if he were a new born). It's amazing how still and silent people can be in the middle of the night.

In the morning, he said he felt bruised but more comfortable and decided paracetamol was the answer. My offers to email Prof or Dr Savage were flatly refused. We set off to Highgate to have lunch with my uncle, aunt and cousin.

I was so focused on the delicious lunch, it took me several courses to realise that Quent was very quiet. He admitted he was in some pain, took more painkillers and went to lie down. I had had enough of being obedient. I left a telephone message for Dr Savage and emailed both him and Prof once we got home.

Dr Savage kindly rang us at 6pm on Friday night. He asked Quent a few questions and told Quent to come up to the hospital to investigate a possible blood clot. It would probably involve another scan, thinning his blood an an overnight stay.

Quent was very grumpy as we dropped him off. He didn't want to go back into hospital and I didn't blame him. He wouldn't let us wait with him, so I came home and worried there instead. At least you can worry with wine and chocolate when you're at home. I spoke to the Prof, who had also been trying to get hold of us. He confirmed that he too was concerned about a blood clot.
I called the hospital at 10.15pm and they told me his ECG and X-ray were clear but he'd just fainted. This did not reassure me at all. I was straight back on the phone to my sister (who'd had several calls by now!) . She did reassure me. Apparently, if the ECG is clear, it's not a large clot. She warned me he may not get a scan that night.

This episode will end at the point that Quent rang me to say Dr Savage had just been back into the hospital to see him - 10.30pm. If you ever overhear a "bloody Doctors" conversation, please set them straight. Our Doctors are so kind and dedicated - and kindness means a huge amount when one of you is genuinely sick and the other is worried sick.

Home and happy

It really is lovely to be home. We are all pretty tired - Oakley included, after a week of endless sleepovers and exciting visitors. He slept for two and a half hours on Tuesday afternoon which is pretty unheard of for a four year old boy. It was - still is - fantastic to see him. We are all a bit smug at the moment. We keep grinning and hugging and kissing as we enjoy quality time together. (When we aren't cursing half term for stealing our daytime naps, that is!)

I don't have much to report. We are doing very little. Quent is snowing skin again. There is a fine film over everything, no matter how often I sweep up. But he has a great appetite and is doing well considering what a terrible time he had at Christie's. This time last week....

We now have nearly three months to get as much healthy food and rest into him as possible.

Talking of which, it's way past my bedtime.

PS. If you missed the post on Quent and friends' sponsored adventure (not sure what else to call it) or, like me, you haven't got round to sponsoring them yet, please see the post "Rallying round the Prof" (or type "sponsor" into the search box on the top left of the blog)... and dig as deep as possible for the amazing Prof Hawkins and his team. Thanks.

Shiny, happy people

Well, you all know what a party animal Quent is. Having seen the great turnout to his last "do", he threw another impromptu gathering last night. All the usual crowd turned up. No abseiling off high buildings this time, but his blood pressure dropped (to 57/34) in the same impressive style. Quent didn't pass out this time, but he had blurred vision, a vast intake of fluids and was sick all over the bed. Plus ca change...

Everyone agreed that enough was enough. Even the Prof said it was obviously over. Today is recovery day and, although still very weak, Quent is already able to read the paper. He can't yet stand unaided, but we are still the morning after the night before.

Talking of reading the paper, I read this week that nurses are going to be sent on courses to learn how to smile. Apparently there are too many cases of "Sorry, not my patient". Well, Nathan House nurses need not attend. The staff here really are amazing. NOTHING is too much trouble and the smiles are constant. I've said it before but I'll say it again - they really do seem to care about their patients. Having finally got home last night after a 12 hour shift looking after Quent, one nurse called in to see how he was doing. Instead of "Sorry, not my patient", their mantra is "I'll do it for you". They do regular handovers to each other so everyone knows what is happening with all the patients. Whoever is nearest will jump up to answer a bell, change a drip or empty the commode. It's an amazing team and we are very, very lucky to be in their care.

Our next visit is not until mid May, as Prof is away for two weeks before that. This has definitely been the hardest round to date but the sun is out and tomorrow, we will be too.

Be my Valentine

Happy Valentine's Day. As Quent said last week, he is treating me to a night away and a meal out. What more could a girl hope for?

Quent has now had 5 doses and, thanksfully, no more crises. He is due another, but they have just done his "obs" (observations) and he isn't ready. It will probably be early afternoon before we go again. He is looking very beaten up, poor thing. He's put on 8 kg (over a stone) in 3 days and so far this morning, hasn't really opened his eyes. So he's missing out on my Valentine's Day "lippy and short skirt" effort...

...Or maybe that's why he's barely opened his eyes. ;o))

Have a romantic day. Up here, love is... helping your husband onto the commode. And, of course, the true joy of knowing we've many more romantic days together.

Tuesday night fever

Having sat around all day, with very little happening, the night proved rather more eventful. We are all blaming Angela, one of the nurses, who spent yesterday asking Quent for more "excitement" to make her day go more quickly.

Quent had dose 3 at 11.10pm. He rigored at 1am and then decided to host a party in his room. It's easy getting invites out in a hospital - you drop your SATS and your blood pressure and everyone just turns up. It's faster than Facebook.

By 3.00am Quent's blood pressure was 60/29 - and then it fell further. He had blurred vision and difficulty breathing, in spite of the maximum amounts of oxygen that were being pumped into him. All the other patients on the ward must have been looking after themselves as we had all the ward nurses, the on call doctor, the nurse practitioner (top dog nurse who roams the hospital looking after acute cases) and the only doctor from Critical Care.

Unfortunately, when Quent passed out, it was just myself and one nurse in the room. She rushed out to get help and there I was, staring into the whites of Quent's eyes as his pupils rolled. I am not sure if the Scouts do a nursing badge, but if they do, maybe someone could send one over for me to sew on my pyjamas. (I have discovered there is a bossy side to nursing to which I am reasonably well suited.)

If I make it sound as if I cope well in such situations, I fear I am talking it up. I was petrified.

This time, we have been in room 8 - a fairly quiet room down the corridor. But today, they are moving us back into the naughty room (room 6), right under the nurses' noses. We had never been anywhere but the three rooms closest to the nurses' station before. Somehow it was destined not to last.

Quent was stable and fast asleep when I left him. But the long wait for the tiny tot to get off the CBeebies website means I have been away longer than intended. (Yes, you're right; I kicked her off in the end. Tiny tots never get off websites by themselves!) I had better get back. Nursing assistants can't spend all day on the internet.

There's no p in Quentin

So here we are again, in sunny Manchester. Oakley waved us off with a cheery "Have a lovely treatment". I think he still confuses the words "treat" and "treatment" - or maybe he confuses Christie's with Champney's.

Quent has had 2 doses and is due his third, but his kidneys are on a go slow, so we have to wait. He says he feels ropey but it's "nothing we haven't come to expect".

I will keep you updated as the week progresses.

Rallying round the Prof

When I asked Quent a while back what he wanted to do if the treatment were successful, he said he’d like to give Prof some money for his research. (I had been thinking of a big party, so felt very small!) On the way home last week, he reiterated this, pointing out that it’s thanks to the donations of people in the past that he is being given his life back. It’s important to keep it going for those who follow behind us.

Prof Hawkins is doing some very exciting new research involving cancer and T-cells. His first patient starts treatment next week. For the moment, the treatment is for other cancers and he has a similar trial planned for renal cancers in the future.

So when Quent’s best man, Richard, suggested a fundraising event for the Prof / Christie’s, Quent was very keen. Especially when he heard the idea. Each “team” (of which I think there are three at present) has to buy a car for £500 to drive around Europe in a week. So far there is a BMW, a Jaguar and a Chevrolet van. And a bill from the garage! If there is anything left of the cars worth selling, the money raised will be added to the sponsorship total.

You have been very generous in the past. If anyone would like to sponsor Quentin and his friends in their efforts to help cancer patients of the future, please click here.

http://www.justgiving.com/european_odyssey

Alternatively, send us a cheque made payable to “The Christie Hospital”.

If you would like to follow the fortunes of the intrepid racers as they make their way around 12 countries and the Nuremburg ring, click here.

http://www.oneweekineurope.blogspot.com

The race starts on 4th April 2008.

Please note that the guys guarantee that none of the sponsorship money will be used on beer, flights home, women or car repairs!

There's no shaving your blushes

Quent looked pretty terrible this time when we got home. The usual Quent sparkle was absent from his eyes and he'd aged at least 10 years in 5 days, as you can see from the shots below (one taken on 1st January and the other on 3rd February). He did try to smile for my picture, but it was painful. He had also tried to shave, but the skin was way too tender.



In fact it got worse before it got better. The skin started to peel away and he had dead skin hanging from his eyelids. "Daddy, I don't like your face", Oakley finally told him.

Meanwhile his body wasn't doing any better. It was bloated and a horrid red colour, with purple blotches and raised patches all over. Here's a picture of his back as illustration - the modest and the faint-hearted may look away now.



Today we have turned a corner. His skin is returning to a more normal colour and the lumpy patches have pretty much gone. His skin felt good enough to shave so he did his forehead too, to get rid of some of the dead skin.

I am sure it's "too much detail" for many of you, but Quent thought it would be interesting and it does give you some idea of just what he's putting himself through.

Bing (bing) bong, end of round one

Just to let you know that all seems well with dose 10. Thanks for the positive thinking. Quent rigored at 13.45 and four hours later, we have had no drastic moments. His blood pressure is still low (systolic reading in the 70s) and he looks about 98 years old, but there are no Intensive Care nurses hovering outside the door.

So, all being well, we will be heading home tomorrow for a week. Hooray!

On top of the drugs and the side effects, we will be delighted to get away from the drip machine. It seems to have bing bonged incessantly all week. It rings every time a drug, antibiotic, bag of saline or flush runs out and keeps binging and bonging until you leap up to sort it out. (They put up a "flush" either side of the antibiotics and the IL-2). In addition, it sounds every time Quentin bends his arm and squashes the line. At the beginning of the week, he has to bend it properly to set the alarm off, but by about Wednesday he only needs a minor inflection to trigger it (due to the swelling). As you can imagine, it's hard to get comfortable without bending your arm a little. I've never been on the "hoop, bendy wire, bell" stall at a fete, but I know what 5 days (and nights) of it would feel like.

I will post again in a few days, once we are happily ensconced at home and I've had time to give son and husband plenty of full-on attention.

Audience participation

Sorry for the lack of humour in the last post. From the absence of comments, I can see that you, justifiably, appreciate the more light-hearted entries.

Hmm. Light-headed, I can do after another sleepless night, but I will struggle a bit with light-hearted. We might need a bit of audience participation on that one. Quent is looking very much like an IL-2 patient (that's Prof-speak for "terrible") but has just taken his last - tenth - dose. Oakley is also ill. He is missing school and a visit to Jack and Martha's - both of which are highlights in his week. I have a cough and a bad headache. The Webbs are feeling like the Wetts today!

Oakley is very solicitous when he rings. Today he asked how the nurses were doing and told Quent he has drawn a picture of him. "Pink, like you were before you went to hospital". We look forward to that one! In fact, we just look forward to getting home - hopefully tomorrow evening.

Please send all your positive thoughts Quent's way at around 1.45pm today. We don't have a good track record on dose 10. I am considering asking them to call it dose 11, in the way hotels often miss out room 13. But failing that, it's over to you - for good vibes and good jibes.