Health and Healthy Conversation

Health

Health is now a major issue. T does not impose his rules on anybody outside the house. He says, ‘It’s their life’. But when sharing a table at a restaurant, his rules take priority.

I must not catch anything in case I give it to him. So my health has to stay tip top. Must get to sleep by midnight. Take a brisk walk every day before it gets dark. To get the vitamin D from sunlight. Wear walking shoes in the morning because I shall be walking later.

Conversation

Strangely having cancer has become not an obstacle but a link in conversation. Everybody wants to tell you about somebody they know who had it. The window cleaner - both his late parents and his in law.

I am also getting daily practice at positive thinking in conversation. Not just being upbeat, but sounding cheeful.

Good News

Now that we know the stomach cancer has gone life is improving. Like the Goat Story. (If you have a problem buy a goat. The goat adds so many more problems that when you get rid of the goat, your other problems don't seem so bad because life is improving.)

Prayers

The cancer of the stomach turned out to be a misreading of a misleading scan shadow. If we had prayed, and believed, we might have thought our prayers had been answered. 

T quips, 'I don't have to pray. Other people are praying for me.'

I used to read that prayers had an effect, like the placebo effect, on those who believed. Assuming that their troubles are either psychosomatic, or exacerbated by losing heart. 

But more recently I read scientific trials which showed that a comparison of two groups, some praying, others not, showed no difference.

I read that a UK nurse had got into trouble for praying for a patient. At first sight that sounds absurd. Surely evidence of her concern would reassure the patient.

Obviously somebody had complained.

One can imagine in such a situation a relative objecting, perhaps because the family think the nurse is relying on prayer, not medicine. More likely, they are of a different religion or no religion, and suspect the nurse is going to persuade the patient to give money to her/his religious organization. 

Milk

T buys food at the supermarket and can stop looking for soy milk and buy semi-skimmed real milk again. He says it tastes better, even a little added to soy milk. 

He cancels the shopping trip he had planned. He feels too tired.

At the beginning of stage one of the treatment he spent a day in hospital under observation. Now he tells me he is feeling tired at home - but less tired than when in hospital on the same day of the cycle last month. Then he slept all day.

Wasting Time In Hospital

He has spent hours researching on the Internet. He is shocked that people sit for hours in hospital without a book, entertainment, or keeping themselves informed. 

Supporters

Some of the patients, out-patients, go to hospital in pairs, mother and daughter. Sometimes it's daughter with the older mother who is being treated. 

Other times you are shocked to see the younger daughter languidly resting in the chair while her older mother is standing, watching, or pacing about. But in this case it's mother helping the younger daughter who's being treated.

PEP Scanners

The UK has lots of the PEP scanners. (I keep wanting to call them PET scanners because I can't remember what that acronym stands for and it sounds like PET. He thought there were only five. But internet research shows not only the ones in Singapore (which is so small that from anywhere on the island you would not be far away even if they had only one). But the UK has several in major cities and so do Dublin and Belfast.

Hair

For the cold treatment to prevent the side effects of the drip, a woman in hospital wore a cold 'hat'. She was asked to remove her ear-rings and necklace. The cold could give her what I would call 'frostbite'.

His hair is falling, he says. He plays mournful classical music. Mourning loss of hair.

Hair today. Gone tomorrow.

I play jolly Country and Western. Not when he's around. Living together has many advantages. So does living apart. 

One has to keep cheerful.

Parking At Hospitals

Must find out if there are any concessionary rates for patients or outpatients at Northwick Park.

My late father spent a month dying in Watford General. They had a system where visitors of long stay patients could get a permit. But you needed to get it from an office which worked office hours, never open when we went at the official visitor times, in the evenings. You needed to get the form. Then take it to the ward to get a signature confirming the circumstances. Then back to the office. What a palaver. 

It would be so much easier if the ward had coupons and could hand you a fe.

Super Clean

End of the first 21 day cycle is the beginning of the hair loss.

We've heard people who shave their heads say that they did it to conceal the fact that they were thinning on top which gave a piebald effect. So that's an excuse to not worry granny about the cancer.  In any case she's so small she can't see the top of her son's head. 

Preparing food has become a cleanliness overdrive.

You can't take a pill, which involves putting your fingertips in your mouth, without washing your hands again before meals. In fact you wash your hands straight away. Because otherwise they contaminate everything.

I remember when I was teaching watching pupils who blew their noses and coughed into their hands and then borrowed my pens or handled the pages of my books and dictionaries. Same principle. 

Wash before 'clean activities' (eating) and after 'dirty activities' (picking up items you dropped on the floor, handling the boots you pulled off, or moved to the side of the room or corridor, or handling the wastebin, or taking out the rubbish.

It's like keeping kosher so that your parents or in-laws can visit, or keeping a special frying pan not used for meat, scrubbed with sand, for the visits of your Hindu family. I have to keep my home ultra-clean, even if the affected person is away overseas, ready for the return. 

I've always thought that paper kitchen roll is cleaner than kitchen sponges and wiping cloths. If you are brought up in a home where your parents thought that using kitchen roll was wasteful, and a sponge can be washed with a kettle of leftover boiling water that is the compromise you make. Now, there's no half measure.  

I look with disgust at tea towels. When I was at grammar school our domestic science teacher taught us to wash tea towels in boiling water after every meal. General knowledge from books on health and looking after your teeth has taught me germs multiply within an hour - so any used cloth should be disinfected within an hour - ideally after use so you don't go off and forget. 

The new system is to use a bowl of bleach as a resting place for the kitchen cloth. How about adding the sponge? Will it dissolve!

A restaurant has to become our second home, in the sense that we are creating a clean space around ourselves. Last weekend he asked our friends if he could take the communal bread and butter first.

In the restaurant I clean the basin and taps. The toilet handle. The door handle. If they've more than one cubicle I go back on a second visit to the same cubicle. So, nothing's changed.

You watch other people rubbing their noses, touching their hair, dabbing at their lips, even wiping their mouth with a table napkin. Don't even put me near children who pick their noses and then hand you sandwiches saying, 'Scuse fingers!'

I think, 'Are we exaggerating the fuss we are making?' Yesterday I spent the evening in a crowd of people (writers). A merry widower told me that his late wife died of breast cancer.

We phone and email all day with any news to do with cancer. TV celebrity Jane Goody, according to my understanding of the newspapers, now has cancer spread from the cervic to other parts. 

And today's old are yesterday's young. Another news report says that three quarters of the baby boomers, the postwar generation who enjoyed the Swinging Sixties, now have cancers of the ulva, vagina or anus - or all.  'Should have heeded the medical advice and warning - use condoms - the long term view.'

People say, 'It may never happen'. When you have cancer, you know it's already happened. And it will happen, if you aren't careful.

So our motto becomes, 'You can't be too careful.'  

I've been in one home for several days. I don't want to go to another family home. If I go to visit my son I am tidying up as I go.  The longer I stay away from a location the worse it gets. I go back and find dust to dust.

He will be here after lunch.

Yesterday I wiped the toilet handles - with throw-away wipes

What shall I do now?  The doorhandles. The light switches. I need hand cream as antidote to the loss of moisture caused by all the washing.

I always washed a lot. The undersides of my slippers.

Maybe I should clean the keys on my laptop.

That leaflet from the hospital about smoking giving you mouth cancer. I want to go up to all the people standing outside pubs and restaurants, telling them, 'Give it up!'

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.