First normal day

Today is the first normal day I’ve had since September last year. J. went off to work, taking Jimjams to school, and abandoning me to my quiet and bizarre world of toy soldiers.

She was cleared fit to work starting from Monday, and went off to see personnel that day to find out what was left of her job after almost 12 months’ absence. It’s not quite over: J. still needs check-ups every couple of months.

Throughout the past year, family, friends and even strangers have helped keep J., Jimjams and I going. It’s been an undeniably dark and stressful time, made worse by knowing that J.’s father died from leukaemia when she was very young (the condition, however, is not hereditary). Medical treatment has advanced hugely in that time, and the leukaemia team at Southampton have been something special.

It may, of course, take a little while for us all to get completely back on the rails.

Heading for the finishing line

We’re in the last week or so of J.’s treatment in hospital. Her neutrofil count was up to 0.4 by Friday, which means she almost has enough of an immune system up and running to come home – we hope by Wednesday. However, she is still trying to fight off a chest infection, and has developed a rash that needs checking out, so her final coming home may be delayed. Mercifully, the squits induced by all the antibiotics are at last in abeyance.

She sounded pretty good on the phone yesterday, bright and cheerful, which is also a hopeful sign. Given that she is entirely fed up with being contained in a small room, and probably never wants to touch hospital food ever again – even I’ve gone off what’s served up in the canteen, and I only eat there a few times a week – she needs to come home.

J. is about a stone and a half lighter than she was when all this began six months ago. There was never very much of her anyway, so the hairless creature that will emerge from hospital will be shocking gaunt. A fattening but healthy diet awaits her.

One lesson here is that if you are going to suffer a critical illness, you want to be slightly overweight. Being a healthy weight for ordinary life doesn’t give you the reserves for six months of brutal drug therapy, nausea and diarrhoea. Middle-aged spread can be good for you.

Last hurdle

J. is back in hospital for her fourth and final course of chemotherapy, the last remaining hurdle prior to the sprint for the finishing line. Emotionally, sending her back was even harder, as I realize how much better the world ticks over when she’s at home. It’s not so much what she does – though the ironing does help – but the fact that she’s there so we can support each other.

A week on from her return, and I am decidedly brittle. It’s been very hard juggling everything I have to do in the time available, and the result has been some 18-hour days. I recognise all the early signs of nervous exhaustion that twice before have forced a week or so’s break from working life, but this time round I don’t feel I have the luxury of taking time off.

So instead I’ve torched a few events that simply create stress, and for which I am currently ill equipped to handle: it means no attendance at wargames show Cavalier in just a week’s time, as the next working week consists of three days, which is barely enough time in which to deal with incoming orders, let alone pack and replenish show crates. And it means I’ve taken the decision not to go to the industry’s biggest event of the year, Salute, in March, because with J. due out of hospital shortly beforehand, I cannot now conceive of leaving her alone for the three days that show will take out of the week.

Blowing a show that provides half a month’s income in cash in a day is not a decision anyone takes lightly, but the truth is that advance orders account for 70 per cent of income, and the remaining 30 per cent involves a lot of hard work. I should be on track again here by the time the autumn schedule of shows rolls around.

So I find myself back on the journey to Southampton General Hospital. The ferries are on WightLink’s appalling depths of winter timetable, which so far has meant a 45-minute wait in Yarmouth after being deposited there by the bus, and a half-hour wait at Lymington Pier for a train up to Brockenhurst. At least it’s a cool but pleasantly sunny day, so hanging around isn’t so bad.

There have been ups. With a long wait in prospect at Yarmouth, I had an early lunch at Gossips Cafe, at the root of Yarmouth Pier. I’ve had the first coffee ever in an Island café that I can truly say that I’ve enjoyed, because Gossips has a proper Italian espresso machine (it also has a ubiquitous filter coffee machine that turns out brown stewed liquid that is to be avoided). I had an Americano, nicely made with an impressive orange crema, and not too diluted, with a delightful roasted flavour. It captured the elusive flavour of the coffees I have on skiing holidays, and which until now I have been unable to replicate back in the UK.

All I wanted for Christmas

J. was home from hospital in time for Christmas, allowing us to have our usual quiet Christmas Day rather than an outing involving gymnastics with the public transport system over the festive season (there is only one ferry off the Island on Christmas Day). She is now halfway through her treatment for leukaemia, and the Christmas break is an ideal opportunity to fatten her up before the next session in hospital.

We don’t have Christmas lunch as such. The meal extends over the whole day, with soup and a first course at lunchtime, and the main course and dessert in the evening. That way you get the full monty without bloating and being unable to move. As usual I cooked the lot: leek and potato soup; smoked salmon and cream cheese pasta; roast chicken with the usual vegetable suspects (potatoes and carrots from the garden); and trifle.

Jimjams was remarkably restrained when it came to the presents, and for the first time left some to open throughout the day. The two of us had a short walk into Freshwater after the lunchtime stage of the meal, giving us a chance to talk: the second time this week as we both had a shopping spree in Southampton on the Monday. Perhaps it is too much to ask that she is leaving behind her the stage of teenage grunting, but I can hope. She has made several attempts recently at being useful around the house, to the extent of even getting her dishes into the dishwasher rather than leaving them on the side.

With J.’s departure on the 28th looming all too soon, it means Jimjams and I will be on our own for new year. It won’t be quiet: with Rockband for the Wii in the house, I suspect Jimjams has her new year’s eve planned. New Year isn’t the only quiet day ahead: both wedding anniversary and Jimjams’ birthday are in early January, and for one or more of those we will be visiting in hospital.

Christmas was quiet. I got two pairs of gloves – one driving, one gardening – a top that I bought myself, J. home, and Jimjams being delightful. I got up at 6.15am having been to midnight mass and late to bed, and went to bed past midnight again. It’s Boxing Day and I’m shattered. Happy, but shattered.

Respite

J. is home for a few days. It marks the end of the first of four chemotherapy treatments, each lasting five to six weeks. Her neutrophil count is way up, well over double what it was when admitted, but still below normal; it was still zero only on Sunday.

I spent most of yesterday cleaning her room, sterilising containers and boiling water, ready to meet demands of a neutropenic diet. This also mean lots of fresh cooking, no reheating, and avoiding a pile of food that J. is allergic to anyway.

Selfishly, it means I don’t have to travel to Southampton for a week. I need the break from the travel as much as J. needs a break from hospital and a few home comforts.

J. – the video virgin

I’ve spent the past week or so sorting out a mobile broadband package and laptop for J. so she can keep in touch by email and messenger software while in hospital. We had the first link-up last night and managed to get the webcams working both ways, even though it was J.’s first time using messenger software. We used mobiles for the audio link, but I aim to get her set up for the audio side of the software shortly.

Friends who want to get in touch with her this way should let me know and I will pass on her email address and messenger ID.

I had no idea hospitals were so forgiving in the amount of technical equipment they allow patients to have. Perhaps it’s unique to wards where patients have to be in isolation from the germ-ridden world. And the idea came from J.’s neighbour in the next bed, who’d been set up with mobile broadband so her children – who are too young to be allowed into the ward – can see her.

I plumped for a T-mobile package. First, because it give coverage both here in Freshwater and in Southampton, therefore making it useful when J. comes home. Comparatively, 3 offers no coverage at home, yet this was the option pushed by the one mobile phone shop I went into to find out details. The salesman seemed put out that I wanted to go home and check coverage first before committing. Vodafone, Orange and O2 are comparatively patchy when it comes to reception of 3G signals, though Orange phones work OK at home. Second, and the killing argument on the deal, was that T-mobile doesn’t charge if you go over the 3GB monthly data limit (it instead aims to discuss your broadband usage); the cost of all the other mobile broadband deals goes through the ceiling if you exceed the data transfer limit.  Three gig is a lot, but it only takes six programmes on iPlayer to bust that limit. And we don’t know how much J. will use the system during her stay in hospital.

The cheapest overall option was a long contract, but with the potential to use it while out and about once J. is back means it will most certainly get used. Plus it works with my Mac. My Macbook may be my worst ever Mac, but I like the way it handles and presents email; even a Vista PC doesn’t do it for me in this area.

Jimjams also benefited from the deal. Her comparatively new computer has gone to hospital for J. to use, and a more powerful one has taken its place at home. Jimjams is doing graphics and art & design GCSEs, and needs to run the Adobe suite of Illustrator, Photoshop and so on; the previous laptop was mainly bought with wordprocessing, email and the like in mind. I’m impressed by the new machine, another HP laptop (J’s is also HP): they seem very well set up and work well, and when the evil Macbook dies I will probably abandon Macs for ever.

Email aside, I think Vista looks very good; I’m even running it on the Mac thanks to Bootcamp, which in effect turns the Mac into a dual OS laptop. I use the Mac for work, and the Vista side for entertainment – and for communication with J. via messenger. Unfortunately, the only Mac messenger software that supports a webcam appears to be iChat, which is about as effective as two tin cans linked by limp string when it comes to communicating with PCs, on which Live Messenger and Yahoo Messenger predominate.

It begins…

J. gets fitted with her long line today and chemotherapy will start. Both she and I are in good spirits, buoyed by the evident skill, knowledge and optimism of her team on the leukaemia ward. Jimjams and I saw her on Sunday. J. has had a new, shorter haircut, skilfully done by one of the nurses.

I am coping surprisingly well. My day starts hours earlier than it used to and finishes hours later. The house is almost back in order and this week I hope to pick up the reins on work again. I may eventually get back on top of things.