Created Feb 5 2009

Day 21 of the first course. (If you've just landed on my posts and not started at the beginning, I'm not the one with the cancer. It's one of my family and I'm a writer.) 

To protect the privacy of the person who has the cancer, call him T.

1 The Hospital Blood Test timing

The cancer patient is at the head of the list, marked urgent, for appointments and lab results.

We are going to book appointments ahead, making them early. T is an early riser. 

I only stick to a sensible regime if I have appointments or work or share a home, holiday, hotel or conference centre with others who go to bed early and rise early. (I think this is a personality thing. As an ENFP - P for perceiver - I call it procrastinator, I would always make appointments late in the day in case I overslept and missed it. If I am kept waiting hours, or have a bad reaction and can't work afterwords, at least I've already completed my other tasks of the day.)

This time the appointment was mid-morning. T likes medical appointments early. Your health comes first. Especially if it's cancer. Early morning appointments are less likely to be subject to delays cropping up during the day (yours, traffic, emergencies calling away the doctors). 

 

We've spent hours waiting previously at Northwick Park. So now we have a system going it's better. If you have deliveries to the office, annoyingly they often won't say what time they deliver. Some companies tell you morning or afternoon delivery. That's much better. You can't know whether you'll be back. the delivery companies (stationery, for example) say that it costs them if you are out and they deliver twice. 

They say the driver/despatcher won't phone you. But they do have phones. Today's driver phoned back to head office. They have to do that if you've changed something and their note says to deliver and they don't have a record to hand about collecting as well.

Even if we you live separately, which might be an option when you already have two homes, when you get a delivery and you are out at the medical appointments, somebody else has to be at your home or office to receive deliveries. It's a whole game, a caper. 

Losing Hair 

The ladies at my book group told me you can have a kind of ice pack scarf on your head during treatment to cut down on hair loss.

However, that might reduce the effectiveness of the treatment in that location. Brain tumours are not a problem. At this stage. But you never know.

I think hair loss is more demoralising for a woman - especially a long-haired woman, than a man.

Other options are to go completely bald with a bald haircut straight away. So there's nothing to fall out.

I read that you can buy wigs. Or even get them from the NHS. One view is: get as much as you are entitled to from the NHS. You've paid in for years. It's your right. It's providing employment for NHS workers and suppliers.

Another view is that if you are getting expensive drugs from the NHS, you can easily afford, if not a human hair wig, or one made from your own hair, a bandanna costing under five pounds.

Order online. It arrives a day or two later.  We have been through the buying bandannas phase.

Funny how yesterday's worry or problem, like yesterday's new shoes, like yesterday's news on TV, is of no interest a week later. 

Like my holidays and business trips. Two months or over a year later somebody asks, 'How was your holiday?' My reaction is, 'When did I last see you? Which holiday? I've forgotten. Go on line and see what I wrote at the time. I'm digressing. Let's go back to the subject of cancer treatments.

Long or cut short - 'and shortfall'

T's idea was to cut his hair short so his mother would not notice.

Also falling hair would be less of an embarrassment when out and less of an inconvenience at home. 

It turns out that longer hair is better. Longer hairs can be scooped up. Short hairs are harder to get hold of. You need to vacuum clean around the pillows and beds. 

We are hot on hygiene. Always have been. But now everybody is working together. Hairs and nail clippings feed dust mites in the bedding. On the floor they attract all sort of things. Like what? Probably carpet beetles. Germs. Never mind what dust and dirt attracts. We have to keep control.

Control

Control is the magic word, the important word. Important physically. Important mentally.

When you are ill, or have cancer, you feel out of control. My keeping  this diary or blog makes me feel in control.

Why do teenagers keep diaries? Because they are trying to make sense of life. Their body changes make them feel out of control. The diary puts them back in control.

Anne Frank had plenty of people to talk to, cooped up with adults. Although for long hours they had to remain silent in daytime so the office workers underneath and people living around would not hear them.

Being obliged to go into hiding, not allowed to go out, made them feel out of control. Being in danger of discovery made them feel out of control. Writing the diary put Anne back in control 

Plane Travel

Have we been over cautious? A nurse at the hospital advised against long-haul flights. Danger of infection.

On business you can travel with more space around, less danger of the person next to you coughing and sneezing over you. Fewer people breathing same air space.

The other problem to solve is that if you run a temperature, the symptoms resemble flu, your immune system is not fighting infection and you urgently need antibiotics. We've read on line that you need to be within four hours flying time of a hospital or medical attention. (I think ambulances come direct to the airport - so you get attention on landing.) But it seems that you need attention even faster. We (meaning T - telling me or emailing me) will now be investigating carrying an injectable antibiotic. On flights. 

We are with half an hour's drive of a hospital most areas of NW London.