Carry on nursing

I was in such a hurry to let the slouching teenager back onto MySpace, that I forgot to mention one of the most important elements of Dose 10. The Christie's team.

They really are amazing. Very professional and knowledgeable, enormously caring (towards both Quent and myself) and so attentive. Nurses, Doctors, the Catering staff, Prof himself. All of them. When it's appropriate to chat and have a joke, they will; when it's not, they just get on with the job in hand, calmly and efficiently. There is a great team spirit amongst them. Every time a new one comes onto the scene, I find myself thinking how lovely she / he is.

It was so reassuring that they remained utterly calm through the trials of Dose 10. Always at Quent's side, checking and monitoring everything, but not an ounce of panic. As one of the Critical Care nurses explained, if most patients had even one parameter (blood pressure, SATS, pulse etc) as abnormal as an IL-2 patient, they would be straight onto the High Dependency Unit (HDU). I know they are all very concerned, but their calm exterior is a real tonic.

The nurses are firm favourites with Oakley too. We won the ward Hallowe'en raffle and Oakley is delighted with his new skeleton mug, eyeball chocolates, glow in the dark spiders, decorations etc. Literally more gifts than he can count. "It's my favourite" he exclaimed as he opened each one. I didn't allow the trident into bed with him, but he took the inflatable ghost and Hallowe'en cat. I could hear it purring Happy Hallowe'en as I passed his room on my way to bed.

Now we are back home, Quent's nursing team consists of myself and Oakley. Not quite the same level of professionalism, but we lack nothing in love. We have put together a care plan. My suggestions of being gentle and playing quietly were trumped by Oakley's ideas - such as ice cream for breakfast and making some Calpol out of Lego. Just as good as a handful of drugs, I am sure.

Don't say I didn't warn you

I know many of you will find it hard to equate the name Quent with the word predictable, but dose 10 turned out to be every bit as hard as last time.

Quent's SATS fell and his heart rate soared to the extent that the nurses called the Nurse Practitioner, then the on call Doctor and then the Critical Care Nurse Consultant. They did an ECG and an x-ray but decided that he was, by then, stable enough to leave him where he was.

He is now asleep and snoring loudly.

Dr Adam explained that, although the ECG trace was fine, the X-ray showed a lot of fluid on the lungs - which leads to the shortness of breathe and racing heart. It's a result of capillary leak syndrome; a "not unexpected complication with IL-2". Once the blood pressure recovers, they will give him a drug to release the fluid. There will be no more IL-2 today and we will probably call it a day for this round. (Unless Quent and the Prof between them decide to have a day's rest and another couple of goes tomorrow). There are no expected long term effects of the fluid.

Quent listened to half the explanation about his lungs before falling back into his loud slumber. He did, however, manage to stay awake for all the chat about the Dr's recent climbing holiday in Greece. ;o)

me me me me me

Thanks to those who have emailed me about my thyroid cyst. I found out this week that it is benign and that no further action is required. I was expecting that, but it's still a relief.

The latest from Manchester

Quent is fast asleep and burbling away to himself in a pethidine high after dose NINE.

He is feeling rather "beaten up" but doing extremely well. The prof is happy (but pushing for more, of course).

Everything is following a spookily similar pattern to our first week last time round. This time, we started about 4 hours earlier and he's had dose 9 ... four hours earlier on the corresponding day. The side effects are kicking in around the same doses too. I just hope we buck the trend on the next dose, because dose 10 was the really horrid one in July.

We met Dr Adam today (or at least that's what the nurses call him). He's the cool, young Doctor who looks as if he's in Casualty. (Not that I watch Casualty, so apologies if that's an insult.) He has a short mohikan haircut and heads up the Plain English Campaign for the Health Service. He gave us a fantastic, animated explanation of Quent's cancer, including this perfect insight into how immunotherapy works to kill the spots. "Immunotherapy tells the immune system "Get off your arse and have a munch at this"."

If only we'd met him a year ago, I could have saved you all a lot of dull reading!

Midweek massage

We haven't been at Christie's on a Wednesday lunchtime before - and we've been missing out. Wednesday is massage day - for patients AND CARERS! Quent had a great foot massage - very different to the way I slap on the acqeuous cream. And I had a wonderful back, neck, arms and hand massage. ("Would it be easier with her top off?", Quent asked, hopefully!) All delivered by a charming French lady with a passion for sailing. Fantastic!

Quent has been doing so well. He's about to have dose six and it's all going pretty well to plan. A plan that includes puffiness, thrush, SATS dropping, low blood pressure and extreme sleepiness, but an increasingly familiar one. We've had no visits from Critical Care yet, although there was a rumour they were keen to see Quentin at one point.

If they are looking for him - he's the one with the smile on his face, shut in his room with his wife and a French masseuse.

His eyes bigger than his belly

We had a lovely few days' touring friends in the north, between the scan and the start of treatment. We started and ended with a wonderful welcome at Anita and Jonathan's amazing barn conversion (think Grand Designs) and visited a friend, a cousin and my godmother on our way to Gateshead. The weather was spectacular and the Yorkshire Dales were breathtaking.

We had a perfect, sunny weekend with my brother and his family in Gateshead. Oakley proudly introduced his cousin Amy to total strangers and accompanied her to a Hallowe'en party dressed as a skeleton. He was of course "too busy having fun to stop" when it came to saying goodbye.

All in all, we arrived at the hospital well rested and pretty relaxed on Monday morning. The treatment didn't start till 3.40pm so we watched a film, chatted - and ate! By the time he rigored, Quent had managed to consume two three course meals, including soup, fish pie, roast chicken, sponge pudding and custard etc. It all came back up a while later. Between the sickness and three rigors with the first dose, we were soon keeping the nurses busy.

The second dose was less eventful and Quent is now asleep after dose 3 and the associated rigor. His sats plummeted again and the oxygen was whacked up to full, as a student nurse was introduced to IL-2. He was drifting in and out of sleep after the pethidine, but managed to joke he's ready for hallowe'en as he saw his entire fingers had gone blue.

We are right back in the throes of it and I can't say it's pleasant. But the warmth and care of the nurses helps - as does the thought that the treatment finishes on Friday and we'll be home at the weekend.

From 0 to 50 in … a year!

Brilliant news! Prof Hawkins kindly rang us this afternoon to tell us that the news from Quent’s scan is good. All existing spots have reduced (to greater or lesser degree) and no new ones have appeared, so we are all set for more IL-2 on Monday.

It was a year ago yesterday Quent’s cancer was first diagnosed, and Quent has asked me to summarise his progress since then. So, here’s the story so far:

Oct 19th 2006… Quent told he has advanced kidney cancer. It is incurable and hard to treat. The only treatment has a low success rate and doesn’t extend your life by much, even if it works. If it doesn’t work for Quent, he has 8 to 12 months to live.

Late Oct 2006. Told that, very occasionally, the spots freeze or regress after treatment and people can live several years. One Doctor knows someone (out of several hundred patients) who has lived 11 years, another Doctor’s record is 7 years to date. Chance of long term survival creeps above 0%, but not as far as 1%. Surgeon and Consultant more optimistic about life expectancy than the Doctor who diagnosed him.

Early 2007. We find out about Interleuken 2 which claims a 5% complete response rate in the USA. Advised against it by everyone we speak to in UK.

Post Easter 2007. Investigate Interleuken 2 further and agree with Consultant that it could be appropriate for Quentin, as he might be one of the 16% of people suitable for treatment.

July 2007. Referred to Christie’s, the only place IL-2 is done in the UK. Find out Quent is suitable for treatment and that they have almost 20% cure (long term survival) rate to date among those treated.

July 2007. Find Quent is in the “top set” giving him 75% chance of response, of which approx half are cured / enjoy long term survival. Chance of survival has jumped to 37%.

October 20th 2007. Prof Hawkins calls with scan results telling us Quent is one of those who responds. His chance of long term survival is now 50% (albeit figures on very low base - if Quent makes it, he will join just a handful who have been cured in the UK).

What a year. And not once has Quent doubted that he will be a survivor - even when we were told there wasn’t a hope.

Errata

A couple of corrections for our regular readers:

1. Quent will still have the scan on Thursday, but we won't now get the results till Monday morning. One fewer hospital appointment.

2. I am not a total fraud, after all. I have a cyst on my thyroid. They think it's benign but are going to test it on Tuesday. Make that another hospital appointment, then!

What are we like? We go to hospital far more often than we go to the cinema. In fact, I wouldn't be surprised if I've been to the hospital more often than I've been to the gym this year. And don't hold your breath for an errata on that one.

Ageing (dis)gracefully

It transpires that Quent does have a bacterial chest infection. (His neutrophylls and CRP were elevated in the blood tests). Given we go to Manchester a week on Thursday, we have to focus on getting him better asap. Dr Savage has given him 5 days' antibiotics and told us to go back if Quent is not better by the end of the week.

I, however, am a fraud. I had an x-ray recently (for something else) which revealed my trachea is deviated. The most common cause of this is a thyroid goiter (lump). I had an appointment at Charing Cross this morning, before Quent's, but on examination it transpires I am probably just a bit wonky. I have hypochondria, but it's not generally treatable.

His and hers hospital appointments. Next stop, reading glasses and a subscription to Saga magazine.

Hoop 'n cough

We are off to Charing Cross again tomorrow to see our friend Dr Savage. Quent has had a terrible cough all weekend. It's a bad version of one Oakley and I have had, so we don't think it's anything sinister, but we weren't sure if antibiotics from the GP would be suitable just before the next round of IL-2. Dr Savage has kindly offered to check it out.

It's ironic because Quent was only saying last week that he was feeling much better. He's pretty much back up to the pre-Manchester weight and the lump on his elbow has finally gone. He was saying that the Doctors really do know how long you need to recover - before they whack you with another round! In two weeks' time, he will have had a couple of doses so we have to focus on getting his chest clear of this infection.

I have started dreaming about IL-2. In my dream the hospital room was huge and full of all sorts of different friends. There was a car crash involved too. I guess I am getting a bit anxious.

Oakley is fine and continues to enjoy "big school". He told me the other day that now he's at big school, he really likes onions and aubergines - and can I please put some in his birthday cake, with a tiny bit of chocolate. Move over Nigella. He's also getting into the playground chat. "Mum, I really like Dr Hoop, he's so cool" he told me. I think it's an improvement - Dr Hoop would have those Daleks on the run.

Anyway, who are we to laugh about Doctors with strange names? Charing Cross, here we come.