What's good for the goose...

... is good for the gosling.

Quent has been suffering with some dizzy spells and pains in his arms. The latter started in hospital with the blood pressure cuff, but he still has them over two weeks later. He decided to go to see Dr Savage on Friday to get it checked out. As ever, Dr Savage was very thorough and did an ultrasound (to check for a blood clot) and an x-ray (to check for a growth on the bones). Thankfully, both were negative. It doesn't tell us what the pains are, but it does reassure us somewhat.

Oakley was very under the weather on Saturday and not responding to Calpol. I have two bits of medical knowledge - renal cancer and meningitis symptoms. Oakley had about 5 of the meningitis symptoms so, after several phone calls, we ended up at Ealing Hospital out of hours service. Nice hospital. Fantastic service. Terrible parking charges. Still, it's nice to ring the changes. Charing Cross is getting a bit over-familiar.

It turned out Oakley has "raging tonsillitis" - which is much better than meningitis, so we returned home happy with a bottle of penicillin and an empty purse. This was Saturday evening and the night was still (relatively) young. I realise Florence Nightingale would not have left her patients to go clubbing, but I have never pretended to have natural nursing tendencies - and anyway, Shoreditch House wasn't open in her day. I left the large patient in charge of the smaller one and abandoned sick bay.

Oakley seemed much better on Sunday after just a couple of spoonfuls of the hard stuff. By mid-morning, he was inviting Quent (busy on his PC) to a session of Playmobil. "Daddy", he said, "you've had enough screen time now".

...What's good for the gosling, is good for the goose.

Vicky

We have been greedily asking for your prayers and positive thoughts for so long. But today ours are elsewhere. Vicky, whom we came to know through this terrible illness, died yesterday morning, just before her 41st birthday. A good friend of our friend Sue, Vicky was diagnosed last October - about a week after Quentin. As Vicky put it, we seemed to tread a parallel path for quite a while.

Not just in terms of diagnosis. Like Quent, Vicky was an upbeat, generous person, who loved sailing. She was known for her sense of fun and fantastic smile and was extremely brave throughout her illness. Vicky’s daughter Iona (6) and her partner Martin, as well as all her family – and Sue – are uppermost in our thoughts at the moment.

From the horse's mouth

We thought you'd like to get Quent's perspective on his treatment, so here it is, in his own words..

Feint hearted readers stop here, no really, this is not pleasant. Your choice then....

Woke up this morning, it is good to be home in my own bed, the hospital matresses are covered in rubber so get sweaty after a while. Did not have the strength to sit up or even roll over. My arms felt like someone has battered me with a baseball bat. When you rigor, you tense your muscles really hard, and shake violently, afterwards your muscles feel bruised. If I wanted to scratch my face, I generally had to push my elbow with my spare hand in order to get the strength to lift my hand up - that was just after the first rigor.

Over the week in hospital you regularly have your "Obs" done. If you are in a bad way this will be every 15 minutes. It includes taking your temperature, heart rate, Blood Pressure etc. Taking Blood Pressure became agony, as the pump up cuff crushes your bicep already suffering from the rigor and then slowly releases its air. The regular cuff crushing did seem to add to the feeling of having been beaten by a baseball bat.

Pump you up and wring you out. When you first get into hospital, they have to put you on a drip for 3 hours to over hydrate you, before pumping in the IL-2. Over the week the IL-2 adds to add the fluid in your body, you ankles swell up and your knuckles and various joints can hurt. It can increase your body weight by 15% (after that the medical team won't give you any more IL-2). I went up 3 kilos (about half a stone) over 24 hours. At the end of the week they wring you out with a few fruzamide pills, they seem to have a fairly quick response to increase your pee. This in turn makes you thirsty as hell, no point in drinking out of anything but a pint glass.

After the first does of IL-2 I puked up, I did not eat anything after that for the whole week. The sickness continued even long after I had emptied my stomach. Hanging on tight to the nice warm feeling cardboard bowls you get in hospital I managed to produce quite a few of the bright green bowls of bile I've not seen since they actually removed my kidney. Amazing, a week without food, and I was not in the slightest bit hungry. Starting to eat again now but nowhere near full portion size.

I have a lot of coughing fits, apparently it is to do with "capillary leakage". One of the many "interesting" side effects of IL-2 is that fluid leaks into your lungs. After coughing for a while you tend to cough up a tiny amount of what looks like spit, problem is the coughing fit can carry on for quite a while even if you are dog tired and just want to go to sleep. Your intestines leak as well, which is why you get diarrhoea.

Farting when you have diarrhoea is a dangerous game, you may think that you are connected with loads of pipes and wires, and you are incredibly tired and therefore can't get out of bed. But you had better up your game, because there is a lot at stake! Get a commode put within reach of all the pipes and you learn!

My skin was OK whilst in hospital, but since getting home it has started "hardening" and is now beginning to shed nicely. I guess over the next day or so the "full on" snow storm will start where it comes off quicker than Helen can Hoover it up. It started feeling dry and really sore round my eye sockets - the nurses said my eyes had started to look sunken and dark. The solution is Aqueous cream but as Helen put it on, from being sore, my eyelids felt like they had been set on fire!

The "soft bits" peel first (yes all of them), with soles of the feet last. That tends to take a couple of weeks, at the moment my tummy, hands, arms and face are going. I looked in the mirror, I look about 80, my skin turned a sort of grey - white colour. The skin on my face no longer fits it, I am not sure if my face shrank, or the skin got baggy either way it don't look good.

I seemed to spend a large proportion of last week asleep, which was a shame for my sister who came miles to see me. I was asleep when she first arrived, and even when I awoke, I did not really open my eyes as I was so tired.

Unfortunately it did not stop me opening my mouth. The pethidine means I tend to talk more in my sleep when under treatment. This gave Helen and the nurses some giggles as it was generally nonsense.

Whilst all this sounds pretty grim, in reality I am very happy to take it because whilst still not certain it feels like I am on my way to getting the ultimate - a cure from kidney cancer that has spread to the lungs.

That's enough from me. The treatment does make you incredibly tired. Time for my afternoon sleep.

We're back (home and online)

Thanks to Anita - and to Jonathan, who was temp PA to my temp PA. Apparently his typing is faster. Behind every great woman...

There's plenty to catch up on. I really missed you all at the hospital. When I blog, I feel connected with so many people and so much love. (That's the hippy in me coming out.)

We had a good week off. It's amazing how much more quickly time goes in Chiswick than in Manchester. It must be part of the North / South divide. The week was mainly spent resting and playing with Oakley at home, but we did get out for a few pub lunches and a couple of gentle walks. Oakley and I went trick or treating, Quent put in a brief appearance at Scouts and we all made it to the school Hallowe'en disco (at 3.30pm!).

Before we knew it (Mon 5th Nov), we were back in Manchester. Quent put a spectacular Bonfire Night display into the sick bowls after dose 1. The doses this time were very tough and Quent found it hard going. Dose 1 was the sickness dose, dose 2 seemed to affect the kidneys and it took ages to "PU" (that's Nurse speak for passing urine). By dose 3, Quent had blurred vision, a numb lip and diarrhoea - which is always worrying for me because I know I can't spell it. ;o)

However, there were no major crises. Although the High Dependency folk came onto the ward, they never made it into our room and nor did the emergency ECG machine. That made it much more bearable for me. It's upsetting to watch any dose, of course, but I wasn't actually frightened this time around. We progressed slowly but steadily through the week. That said, there was some tension on the ward one day. Quent started to rigor and the nurses realised that someone had gone home with the only key to the controlled drugs cupboard. Oops.

I was trying to help out where possible and at one point I was even asked if I was a Nurse. Only my family will know just how funny this is. Nothing could be further from the truth but I am, these days, a dab hand with an oxygen mask. Maybe one day I will be able to do blood, gore and hospital corners too.

The funniest part of the week, however, was when Quent decided he'd had enough after dose 7. One of the Nurses said she thought Prof wanted him to do one more. "Well, he can bugger off", was Quent's reply. He didn't quite say that to the Prof himself, but he was very firm that the show was over. The Prof tried to persuade him for a little while but finally admitted that 7 is a very good number. He even volunteered that we had started early on Monday so couldn't be expected to be carrying on to the bitter end. It didn't stop his calling the ward at 9pm last night asking the nurses if Quent had changed his mind and wanted to go again. "Have I got News for You" was on. How apt!

Anyway, we are home at last and the next big event in the calendar is... Christmas. Bring it on.

Update from (near) Manchester

Hacking into Quent's blog with Helen's help.

There has been no internet access at the hospital since last week, so she can't update the blog.

In brief, Quentin is finding the second week of treatment tough. He is feeling pretty rotten and has a host of unpleasant side effects. But he is sticking with it and doing really well.

His fifth dose is due this evening. Prof NOS is pleased with his progress.

Helen will post as soon as she can, but in the meantime they both send their love.

Anita, temp PA to Helen.