Hair…….NOT!

Well, you can’t say they didn’t warn us.  I definitely remember the chemo nurse saying ‘Yes, it will all fall out, all of it, probably all at once.’

And it is.  In big handfuls.  I gave a demo to the gin group.

A couple of days ago I woke up and it felt as if someone had been pulling hard on the hair all night.  The roots were tender, felt fizzy and slightly like they were standing on end.  I realise now they were just giving up the ghost.

Claire phoned up this morning and said ‘I’m bringing something round to show you.’

It was her own shaved head.  I opened the door and screamed.  I must say though, it is comforting to think that someone will do that for you.  (TBH  I think she was bored and relished the idea of doing something a bit out of the ordinary, she does get bored easily.)

She looks like a cancer patient.  Despite mine falling out like there is no tomorrow, I am the one with hair!  I would shave it off today to keep the poor girl company, but I’m going out tonight and don’t want to look like a freak.

I’ll do it tomoz.

If anyone else out there feels a bit bored and fancies joining in with our skinhead look please feel free.  My son has said he will do it ‘with all my mates’.  He has not consulted them, but for some reason has great faith that his mates will unquestioningly follow whatever hairstyle trend he alights upon.  The barber on Church Street actually has had young lads going in there asking for ‘an Alfie’.  The last ‘Alfie’ was shaved sides and a very long curvy fringe.

So if you see a bunch of gangly skinheads in town, don’t worry, they’re softies really.

Will post a picture after the big shave tomorrow.

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The Big De-clutter and the Turbo Pimms

When people come round to my house, it gives them stress because they find themselves itching to tidy it up and throw things away.  So my friends,  like circling vultures, detecting my compromised immunity, moved in on my kitchen on Saturday.  Five of them, for five hours.

I must say, it looks rather lovely.  Like a show home.  Nothing on the surfaces.  Cupboards ordered and neat.  Piles of paper gone or sorted into box files.  One of the hubbies brought vittals for the troops and another lovely hubby brought spinach soup for supper.  So very very kind.  And now, can we find anything?  No.  Not a thing.  We have had to put post-it notes on every cupboard.  So on Sunday, the next day, I spotted on Facebook that it was Claire’s birthday.   OMG I thought.  I bet what with slaving away helping me all day yesterday she never arranged anything for her birthday.  She hadn’t even mentioned it.  So, there being a big blue sunny sky, I decided on impulse to go to town, buy a bottle of Pimms and take her a big jug of the stuff.  After all, it is the most optimistic of drinks.  With Pimms you really feel like winter might be over.  Fred looked up the recipe online.  ‘One measure of Pimms, two of lemonade, cucumber, strawberries, orange, apple and ice,’ he said.  ‘Ooh, look here.  Turbo Pimms:  add half a bottle of gin to the mix.’  He omitted to say that if you add the half bottle of gin you are meant to change the two measures of lemonade to five measures.  We couldn’t find a jug big enough as all the jugs in the house are strangely full of flowers.  So we took the big cauldron.  In went the Pimms, in went the gin, in went the lemonade, with ice, sliced cucumber, strawbs, apple and orange.  We covered it with cling-film for going in the car, tied a red ribbon round it and headed off at around three o’clock.  You do understand, I was meaning to hand the cauldron over, not, definitely not, drink any of this rather lethal concoction.  What I should have done, of course, was take another container with non-alcoholic healthy berry pomegranate juice also with lovely fruit floating in it.  That would have been clever.  Claire’s face absolutely lit up on the doorstep.  ‘Come in the garden and drink it with us’ she said.’No, no, it’s for you,’ we protested.  ‘Oh all right then.’

‘You’re not allowed any though, are you?’ she remembered.

‘Well, it’s your birthday.  I’ll just have one little one.’

Oops.  After one, I was saying ‘Look at it.  It’s a flute salad, for god’s sake.  Allowed flute salad.  Healthy healthy strawberries.’

After two we were shouting slurred truisms across each other.  After three, Sunday walkers going along the path next to Claire’s house were peering worriedly through the hedge at us.  After four we were on the trampoline and Claire said ‘This has absolutely made my day.’

We had an indian takeaway.  Lots of turmeric, so no worries there.

We paid the cab a tenner for a three minute ride.  Must have been drunk or something.

Was worried the next morning.  Hangover and sore throat.  Probably from all the shouting.   My friend Janet made butternut squash, sweet potato and chilli soup which made it better.  We also drank three cups of TeaPig extra strong green tea wot Susanna gave me.  Despite the unfortunate incident being during my ‘nadir’ or low point of immunity, I have recovered, phew.

It would be ill-advised to recommend such fun to other cancer patients, and my instinct is not to declare it to the Thessalonikian without a fight, but, truth is, wickedly good times do remind us why we don’t want to die.

(Ps.  if you do decide to make Turbo Pimms, please remember, it’s five measures of lemonade to one of Pimms.)

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Mad Lucy’s beautiful boobs.

Every Friday my friend Claire brings her daughter to flute, and instead of watching her ‘kack-handed attempts to play’ (Claire’s words not mine) she sneaks off round the corner to her friend Mad Lucy’s house for gin.  Another neighbouring friend pops in too, and by the time I get there with my little pupil, they are all getting rather merry.  Hence my answer to the oncologist’s question:

‘Alcohol?’

‘Ooh, no!’ I say disapprovingly.  A pause.  ‘Well, only on Fridays with my gin group.’

The medical student blinks and smiles on the bed.  I suspect that he understands alcohol.

‘Once a week, gin group’ the Thessalonikian writes on his pad.  I hope he will not ask for units.  The fact is, bottles might be a better measure for the night.  He doesn’t, phew.  The fact is, no one really wants to accept that their crappy choices mean they are wholly responsible for their illness.   But hey, at least I don’t smoke.

So, two weeks before all this cancer thing kicked off, Mad Lucy was telling us, at gin group, all about her boobs.  Thing is, they are gorgeous and they are very much fake.  After she had finished breastfeeding her babies, they had completely shrunk away to nothing.  Bin bags with ping-pong balls in em, as my friend Cheryl used to say.   Mad Lucy put up with it for a year, feeling very sad and depressed about it, and then decided to have them enhanced.   She enjoyed her new boobs very, very much.  (BTW don’t feel sorry for Mad Lucy for having such an epithet:  she earned it.  Besides which, she calls me Mad Hester.)

Thing is, a few weeks ago she went to the surgeon to talk about replacements as it’s been thirteen years;  you are meant to have implants replaced after ten.  She also wanted to know if she had the PIP implants, because, being defective, you can get them replaced for free.  They told her she didn’t have PIP ones.  This was annoying because she had promised me her lovely old sofa as she was planning to buy a new posh one (I know, but Mad Lucy is just like that.)  But the implant replacement op was now going to cost her a few grand.   No new sofa, no old sofa for me.

However, the other day, the breast people phoned her up and told her the Government had announced the night before that they were using the industrial grade silicon implants in this country four years before the date they had previously admitted to.  Another 7,000 women in this country are affected.  This means that Mad Lucy gets the op for free, and I get the sofa!  Result.

Not all good though, as she has a dodgy lymph node, maybe caused by the low-grade silicon.  So she feels sheepish now, and quite bizarrely apologised to me, for having brought this upon herself.   It was maybe a bit daft to make a choice that puts your appearance over your health.  She now thinks that she made a mistake.  She also would like to tell young people out there, that ‘tits are for life, not just for Christmas.’  She means that you do have to think ahead if you get a boob job, to the future necessary ops, the replacements, the risks, the cost.  I would just say ‘Don’t go there’ but I am a bit square and have never understood the how-tos of enhancing beauty, so don’t ask me.

Thinking about all this later in the evening, I realised that no way am I to judge Mad Lucy.  The fact that I am considering reconstruction using abdominal tissue is just as weird as Lucy having bits of silicon popped in.  And aesthetic considerations are what’s driving me to that, as you basically do end up with boobs that still look like boobs and can pretend for maybe the next thirty years that the whole nightmare never happened.  The only scars are around the nipples.

I will recap for you:  either you choose a two hour op, a plain mastectomy, where you have the breasts removed with a lot of the skin and you are left with two scars across a flat chest.  Or, (if you are squeamish please shut your eyes now) they cut off the nipples, scoop out all the breast tissue from both sides, fill the skin with tissue from the tummy along with a blood vessel for each side, reconnect the blood vessels at the top of the boobs, and put on two round bits of skin from the tummy to replace the nipples.  Later some people have the new nipples made to look more like real nipples with tattoos and tweaked bits.  Either way you lose the real nipples as they are very likely to get or have cancer.

This is all very clever, and they are apparently very good at it.  The breast care nurse told me that even though it is a big op,  it is all surface stuff:  it does not involve going in to any body cavity.  However, it can take 12 hours.  My friends all say ‘Well, you have to have an op anyway.  It doesn’t matter how long you are out for.  You won’t know any difference.’

True, but I think things can go wrong.  The longer the op, the more risk of that.  My friends say ‘Look, people opt to have tummy tucks all the time at the drop of a hat.’

Maybe in LA they do.  But I initially felt I was just not the type, having always tried to reject false in favour of natural.   And I was confused as to one thing:  why would the NHS pay for these ops?  Is it because groups pressured them into it?  Fred rather cynically said that it was probably because an £8000 reconstruction will save them roughly the same amount on mental health for the woman who has the more brutal, cheaper op.

I consulted my kids.  Bash said she would definitely prefer to have a mum with boobs.  Alfie did too.  Interesting.  Fred also prefers that option.  So it’s not all about me.  Tabby said that if I don’t go for the reconstruction I might regret it after:  some people do.  You can opt for a later reconstruction, but the scar goes all the way across the new breast and seeing as how some of the skin has been removed, you then have to stretch the skin to fit a bulge in.

Of course, in 5 to 10 percent of cases, the tummy tissue does not ‘take’.  So you end up with the flat chest and the scar instead, or maybe inplants, not sure.  Anyway, have not seen the plastic guy yet, since the op has been delayed til after chemo, September probably. (Best to avoid ops in August in case everyone is on holiday and you are left to rot and die.)  He might say I have not got enough tummy fat to remake me a DD.  Jokes!  I’ve got loads.  Luckily.  And how often do you get to feel happy that you have a fat tum?  This is a definite silver lining.

There is another breast cancer blog which is called The Silver Pen, by Hollye Jacobs.  It is wonderfully funny.  She keeps putting ‘(SL)’ after every good thing that she can find in whatever is happening to her.  You could read her amazing post about PAIN.  She has been through the lot.

Have had a few comments about positive thinking since the last post.  My sister reminded me of a fantastic example of it:  when Chloe was two, we went into a supermarket in St Hilaire and she looked at a chicken in a cellophane wrapper.  ‘What is that?’  she asked.

‘It’s a chicken’ said my sister.

Chloe stroked it through the wrapper.  ‘Aahh, never mind,’ she said tenderly. ‘It will get better.’

I guess there is a point where positive thinking slips into denial?

Anyway, going back to whether anyone should be judging Mad Lucy for ‘having brought it upon herself’,  I have to conclude that no, of course no one should. (This brings up the whole question of people judging others at all.)  Mad Lucy was in a place where she needed those boobs in order to feel like herself.  Why would she have put herself through an op otherwise?  Mad Hester is putting herself in the same basket as Mad Lucy.  There.  Here I am.  You are not alone, Mad Lucy.

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Feet and friends

So the latest side-effect has been quite extreme.  Agony in both feet.  Couldn’t walk much for three days.  Had to hobble from bed to bathroom.  The info sheets I had been given said under ‘Less common side-effects’: ‘Soreness of the palms of the hands and soles of the feet (sometimes known as Palmar Plantar or hand-foot syndrome.)  This is temporary and will improve when treatment is finished.’   Since treatment is finishing in four months I did feel quite disturbed that I might be hobbling for all that time.  A friend has since suggested crutches, which I had never even considered.  Good idea.  Will have them ready for next cycle.

Looked up Palmar Plantar Syndrome of course.  One website rather thrillingly advised me that doing anything such as washing up or cleaning with my hands was a no-no.  (My hands are not affected but I don’t have to make that clear and Fred doesn’t read the blog so will never know. He he).  Fred has been very good at bringing me things during my incapacitation. He went foraging for me at midnight last night and appeared with a bowl.  ‘This is muesli, with almonds and a grape,’  he said.  I know, WTF?  I asked him if he had found the grape at the bottom of the parrots’ cage.  ‘No, he said, ‘it was in with the almonds.’  All very strange.

No one is good at remembering I have GIVEN UP DAIRY.  Keep bringing me cuppas with milk in.  Duh.

So far the first chemo week has gone like this:

Days 1 and 2:  high as a kite, no sleep, felt great.

Days 3 and 4:  aches and pains all over body, ow ow, no sleep, got codeine.  Start of Plantar thing.

Days 5 and 6:  Plantar Syndrome, constant intense foot pain, only can sleep with codeine. Took Carcinosen and went to bed.

Day 7:  so far (11pm), foot pain gone!  only red itchy eyelids, two nosebleeds and no sense of taste.

This has been the most fabulous social whirl of a week. My dad, Karen and Claire have been to the ponies with me. Sue came for a chat with organic chocolate.  Karen again dropped in with fruit from the market.   Pupils brought berries, and cards and flowers.  Ali dropped off a huge fish pie.  Vicky turned up with a wonderful spicy dish with salad, (she does recipe testing for Sainsbury’s). Cath brought flowers and came in for green tea.  Sarah brought dark chocolate, nuts and seeds and sorted out shelves with me.  Debbie came for tea and cleaned out the food cupboard with me.  Phoebe and Tina took me down to lunch (fresh mackerel with grilled tomatoes) at the Lemon Tree.  I got back to find a huge bunch of flowers from the RDA helpers. And I am having to keep up with at least 15 games of Words with Friends.   I am bowled over. It’s like having a birthday every day.  At this rate I’ll feel really bad if I get better.

The major theme of the last few days has been ‘DETOX LIKE CRAZY.’  When I asked the doc about the aches she said to drink a lot to flush out the toxins.  So I have been alternating the green tea with water, apple juice and the mad Flor-Essence herb drink.  It says on the back ‘For hundreds of years Flor-Essence was a secret known only to the native North American Ojibwa tribe and is described as ‘the holy drink which brings the body back into balance with the great spirit.’  Its most anti-cancerous herb out of the eight is sheep sorrel, or Rumex acetosella.

I went to the homeopath yesterday with the foot thing as well as the whole thing – they tend to like the whole thing.  Remedies are very good at killing pain and I don’t fancy becoming a codeine junkie unless I have to.  Had a Carcinosen 200 (surprise surprise, it’s been my constitutional remedy for the past few years and it’s made of cancer), slept for thirteen hours, woke up and the foot pain had gone.  The homeopath is on my case now and is preparing remedies for the next cycle of chemo, now we know what sort of thing to expect.  In answer to my questions, she says we could find the bark that Docetaxel is made of and make a remedy out of it.  This could help my body make sense of the drug before I have to have it again.  All most fascinating.

I went for the first time to the Mary Wallace Centre, near Addenbrooke’s. The centre helps cancer patients with information, support, advice and alternative healing.  They run courses of gentle Yoga, Qigong, Reflexology, How to Tie your Headscarves/Turbans etc.  A friend’s dear mama, Carole, had sent a card recommending that I go there for a talk on diet.  Sam, young and beautiful with two young kids, had a tumour the size of a grapefruit wrapped around her bowel.  Two and a half weeks later, the operating team could barely find it.  She had shrunk it by starving the cancer.  From being a crisps and wine type of girl she became overnight a clean diet born-again.  For breakfast she has muesli, soft berries and soya milk.  For lunch she has Miso soup with garlic, turmeric, curly kale and other veg.  For supper she has a pile of grain such as quinoa or brown rice with roast vegetables and a big raw salad.  And she drinks four cups of properly steeped (six minutes) green tea a day.

There were 16 women in the room listening to Sam.  Most were taking notes.  One poor defeatist whose cancer has come back was wailing ‘How do you keep positive? I find it hard to be positive.’

Sam said ‘I just knew I had to keep trying as hard as I could.  I had to do it 100 percent.’

Defeatist lady said ‘But I’m a shepherd’s pie sort of woman.  My husband would be really upset if I stopped cooking him his favourite things.’

One woman agreed, railing against the tyranny of positivity.  ‘Competitive cancer’ she called it, people vying in the press to be more positive about their illness than the next person.  But I and most of the women there remained quiet.  It’s bloody obvious why you have to remain positive: if you keep thinking you are going to die, then sure as hell you are going to die.  Negative thought patterns obviously lead to lack of energy and stagnation.  You can’t afford that.  Surely there is always something you could be doing to help yourself.  Like breathing well, for example.  I don’t know, sitting up straight. Playing the flute.  Going for a  walk. Or dropping in at the center where they are so supportive.

Having said all this, I just felt a cold chill:  am remembering how the foot pain felt, and thinking that the other drugs, the FEC ones, might make me puke, have diarrhoea and other things.  Then it won’t be so easy to sit up straight or go for a walk and smile at people.  I’ve already found it impossible to walk from bed to bathroom.  Who am I to be so cocky and confident?  See, the doubts are coming trickling in.  Maybe even poor defeatist lady had her Strong Woman intact at the start.

I spoke to Carole during the week.  She is a born-again anti-cancer fanatic whose perseverance and determination has led to her husband Harry still being well five years after a bad prognosis.  She has studied the Anti-cancer diet, and shares all she has learnt energetically.  They do no dairy, no wheat, no sugar.  They check the PH of Harry’s blood and adjust his diet accordingly.  They both look fantastic.  When I asked her how she found the strength to do it she simply said ‘I couldn’t let my Harry die.’  I knew a different Carole thirty years ago.  As a teen, I used to love going round their house because they had a drawer full of Breakaways, Kitkats, Club biscuits and Trios. The drawer is no longer!  They sprout seeds instead.

My breast care nurse phoned up today from Addenbrooke’s.  She said sorry for not arranging for me to get the results of the MRI scan, as she was out all week.  I said that was ok, as the only thing likely to change from the result would be single mastectomy to double.  And I’m already thinking (but as a positive thing) maybe go for the double.  Would I want to risk going through this again in three years time?  As a friend said, while showing me her fabulous reconstructed fake boobs,  ‘If you have no breasts you can’t get breast cancer.’  Hope that’s true.

Then the nurse said I have to go in next week to have a marker clip put in the breast.

‘What is a marker clip?’ I asked.

She said that if I respond really well to chemo the lump might disappear and they need to know where it was so they can still take out the right bit.

‘If the lump disappears completely do I still have to have the op?’ I asked.

‘Yes, because when chemo stopped it would in all likelihood come back.’

Damn, so even if my fabby diet works and with the chemo manages to shrink the tumour down to nothing, I still have to have the boobs off!

I wasn’t trying to be difficult but I did say ‘If we already know I have to have the whole boob off, then why does it matter whereabouts in it the lump is/was?’

I am not sure what she said, something like they had to have a way of knowing where the dodgy cells were located, in case they need to go in and assess cells any time before the op.

I wonder what markers are made of.  Am going to look them up.  Don’t really love the idea of an alien thing in me.  OK, have looked them up.  Looks like the clip is metal, titanium.  About 3mm.  They put them in using a long needle and ultrasound.  Bet it will hurt. (But in a positive way!)

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What are tits for?

Answers on a postcard please.

Of course, I found out what tits were for the moment my first baby latched on. I was an instant devotee.  Breastfeeding was like Wow.   It was bonding time of trance and love and peace man.

I’m naughty to add the ‘man’ there.  It spoils the reverence.  The thing is, I know there are times when reverence is where it’s at. We must be mindful, we must speak our truth in careful, beautifully cadenced prose. But my real love is irreverence. I probably have a case of arrested development as far as sense of humour goes. For example I always have found ‘Viz’ really entertaining. The Fat Slags and Mr Logic do crack me up. I am the only person I know who really loved episodes of Bottom. I have read the Blackadder scripts many times. Bawdy farce is my favourite thing.

I got in trouble for this a few times in my life.  I went through a phase of grimacing ‘AAAAAH BLEEEEEEEESSSSSS!’ for example at the slightest pity-inducing sight.  My poor friend Janet,who had just moved to England, started thinking this was a proper and normal way to respond to people’s sad stories.  She remembers a party where her exceedingly inappropriate ‘AAAHHH BLEEEEESSSS!’ caused everyone to turn and look at her in horror.

During the breastfeeding years you develop a lingo, so you find yourself saying things like ‘Titty time!’ or ‘I’ll just whack the ol boobs out’ or even (with a husky chortle) ‘tits oot for the lads’.  The babies pick up on it. One of mine used to scrunch her face up and say very firmly, ‘ding-ding’. Another one called one breast ‘Mamatit’ and the other one ‘Uvverone.’ (Poor Uvverone is the one with the cancer, go figure!)

I was breast-obsessed for ten years, feeding each baby til two and a half.  When my last baby was born, I had the idea of writing a book about a human milk factory. A comedy.  A book which would be about breasts, which would not be afraid of saying ‘TITS‘ and which would blow taboos sky high.  I wrote it at night while my four kiddies slept.

The only publisher who showed any interest was called Bastard Books!  Even they couldn’t handle it, so I self-published in 2007.

You probably should not read it.  The book is the self-indulgent, addled ramblings of a sleep-deprived breastfeeding milk-worlder.  My only real die-hard fans are, if not certifiably insane, at least fruitcakes of the first order.  However, I still think it’ll make a corker of a film.  In my factory the women are divided into groups.  The Jugs, the Fleshy Bagpipes, the Knockers, the Hooters etc.  They are put on different organic diets, anti-cancer, anti-inflammatory, pro-brain development etc.  Their milks are sold in smoothie form and used to make medicines to cure different illnesses.   The milk is also delivered to the village school.  A few months later the local children astound the country by scoring unheard-of  results in their SATS tests.  The private school mothers get well miffed.  It trundles along in this vein.

I have a funny story about the perils of setting your book in a real place.  I set the book in a village called Nebden.  This was of course the village Debden, near Saffron Walden.  I knew Debden well, having lived in the village next door for five years with young children. (Incidentally, Debden school really had done the best in the country in its SATS tests, the catalyst for the whole idea.)  A friend of mine who lived in Debden reviewed the book for the village Pump magazine.  (!  You couldn’t make it up.)  He wrote that he laughed so much that he forgot to get off his train.  He pointed out the similarities of Nebden to Debden, right down to ‘the aged volunteers in the village shop.’  Oops.   The next edition of The Pump bristled with angry letters.  My friend has not been able to go in the shop since.

Also, one day I was picking up poo in the ponies’ field out in Albury, and Gitty, who owns the farm, came up to me and said, ‘You are famous!’

‘Am I?’  I said.

She had been to an upholstery class in Debden and had heard my name, whispered about as a profanity.  The book only has the first name Hester on it.  My mum had not wanted me to put my second name, so people would not know who I was.  Of course this does mean I can join the ranks of Cher, Madonna, Adele.

A year ago, I was excited to hear that The Icecreamists, an ice cream shop in Covent Garden, was selling breast milk ice cream.  I visited the shop.  The  ‘Baby Gaga’ tray was empty by then, having been seized by the council.  I was served a cuppa by a lovely girl dressed as Lady Gaga, bought a T-shirt and left them a copy of my book.  Just so they would know that their idea had a precedent!   And that they only really had the tip of the iceberg.

( My local paper ran a little article on this here)

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Anti-cancer soup

So, the couple of days’ worth of steroid tablets I was given have run out.  In the middle of the night I woke up with the strangest little pains in my joints and muscles.  All over the body.  Quick stabs, in the knee, then the hip, then the neck, the ankle, the soles of the feet.  To the point where you are going Ow, ow, OW.  There was no escape.  I should then have consulted the notes I was given about the chemo.  They say ‘Docetaxel can cause joint and muscle pains.  It is important to tell your doctor about this, so that they can prescribe painkillers.’

Instead, I did the ponies. My friend Barney met me there.  Interesting to look at a bale of haylage that normally you would chuck lightly over the fence, and realise you can’t even drag it over the grass because your arms and fingers are so weak. Barney did two barrowloads of poo for me.  We then went for a walk in the sun.  I had to ask Barn to go more slowly as the aches had really become quite debilitating.  I decided not to shop as I didn’t want to be going ‘ow ow’ in the supermarket.

Had to miss my Riding for the Disabled. You can’t help a kid on or off a horse with weak arms and the shakes!  Have only just become an instructor so that is annoying.

I have been reading a book which my friend Nellen sent to me called Anti-cancer a new way of life.  It has lists of fighting foods.  When we got home I decided to make an Anti-cancer Soup using whatever I could find in the house.

I sizzled three cloves of garlic in olive oil.  Chopped up two organic carrots and a sweet potato and sizzled them too.  I sprinkled lots of turmeric over them, and ground some black pepper.  (The book says to use those two together.)  I separated the florets on two heads of organic broccoli and popped them in. In went the heart of a green cabbage,  a kettleful of hot water, a little bit of sea salt and a cupful of quick-cook four-grain mix.  After about fifteen minutes it was ready. It was surprisingly fab.  Barney had some too, and another friend came by and had two bowls.

I’m going to do this every day, using any ingredients that are mentioned in the book.  Multiple sources of information causing confusion though, as have come across a couple of alarming sites on how cancer is caused by fungus, and we have to avoid peanuts, cashews, mushrooms, and other things which I considered good.  Of course there are zillions of theories out there; this is a big subject.  Sifting the crack-pot ones from the genius is what we have to do.

I did consider painkillers most of the day, you understand, but the chemo nurses had made a big deal about not masking potential symptoms of infection (ie. raised temperature) with Paracetamol.  However after lying down for a while with the pains tormenting me in all parts of my body, especially legs, aaargh, I managed to find the correct information sheet so I worked out that this definitely was a side-effect, and decided that seeing as how I had no temperature I was allowed painkillers.  Ooh, the relief.

Delivered Alfie’s guitar to school and managed a quick shop.  Nipped into the health food shop to pick up the Essiac tea I had ordered.  It’s a blend of eight herbs, which rebalance you.  It’s not a tea really, it’s a liquid.  You add double the amount of hot water.  Had a cup.  A flute pupil came round.  We played duets for an hour.  The pains drove me back to bed.

Just had another painkiller.  Hope it kicks in quick.  Tried to get up to make supper and had to come back to bed.  The pains seem to have joined up and are cramping me up and making me shake.  Can’t write long sentences!  Tabby brought up my file.  I rummaged through all the phone numbers they gave me for just such occasions and phoned Ward D9.  Asked if there is anything I can take for some relief.  The doctor is going to ring me back.  I hope they say I can have Solpadeine as I love that.  Makes you feel like you are sinking into a fluffy cloud.

My friend Claire has been texting throughout this latest drama.  The last missive says ‘I am so sorry this is happening to you.  Wish I could take it away for you.  But focus…it’s curative :-)’

(This is a reference to my relief at  the doctor the other day ticking the box that said ‘curative’ as opposed to the one that said ‘palliative’.)

I texted back ‘You are right.  I have to imagine the rogue cells screaming in agony.’

She texted back ‘Lol.  They are just like little nazis.’

Now she has sent ‘Can you have gin?’

I just phoned Tabby downstairs to ask her to bring Warrior Man up from my bag.  Need him.  Ow ow ow.

It’s an hour later and they have not rung back.  However had some trout, rice and salad made by my daughter.  The pains have settled somewhat into an all-over ache that is more bearable. Am going to time any painkillers carefully so it doesn’t go out of control again.

This is only day three.  They said days eight to fifteen of each cycle would be the worst.  You can see how it could wear you down after a while.  (If you weren’t a Strong Woman and didn’t have a Warrior that is.)

OK, a doctor phoned after another hour.  She said the pains would likely stop after a few days.  Not allowed Paracetamol, but can have Codeine, hooray.  Fred has gone off to the all-night Tesco to see if he can find any.

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A bit of necessary history

We have to go back thirty years. Some time early in the summer of 1981 I was staying with friends in Dorset and we went swimming at a beach just along the coast from Winfrith Nuclear Power Station. I probably swam for about an hour and a bit.  I still remember being a dolphin, doing countless handstands in the water,  coming out a hundred percent water-logged.

By September 1981 I had booked a doctor’s appointment for a sharp pain deep in my right shoulder, but cancelled it at the last minute as the discomfort had stopped. An x-ray then could have saved much damage.

I did my O-levels that autumn term.  By early January 1982 I had a persistent cough. All night every night. The doctor had prescribed a couple of courses of antibiotics. I suffered from breathlessness with painful lower ribs.  I had difficulty touching my toes in PE when everyone else seemed to be flexible and bouncy around me. I wore woolly tights under my jeans yet they were still falling off me. I had not had a period for a few months. Did I care or really notice? No, because I was crazily fixated on cycling ten miles out to Hildersham to ride a gorgeous strawberry roan pony and did not want anyone to stop me. Never mind that I would stop regularly at the top of the Gog MaGogs to cough up blood. I was fifteen, nearly sixteen.

I remember the PE teacher at school telling me angrily to stop coughing during assembly. Eventually I could not breathe properly and was forced to bed. My GP was on holiday. Another rather decrepit doctor came to the house and wrote out prescriptions for more antibiotics. Two weeks later, on the 23rd February, my GP came back, took one look the toxic state of me and called an ambulance.

In Addenbrooke’s Hospital they drained my lungs which were three quarters full of fluid. I remember having a tube inserted between two ribs in my side and laughing incredulously at the horrendous greeney pus pouring from it into a bucket. It did at least lessen the discomfort and I almost enjoyed the experience as I had a bit of a crush on the young doctor doing the job.

The notes say ‘One litre of pleural fluid was withdrawn 12 hours following admission and this contained large numbers of eosinophils and lymphocytes, some of which had lymphoblastoid appearances and binucleated and multinucleated cells characteristic of the serosal cells of the pleura.’

After a week of X-rays, CT scans, mentionings of Pleurisy and Pneumonia they diagnosed  a centrocytic, centroblastic Non-Hodgkins Lymphoma. They did a biopsy at Papworth on March 2nd 1982 of my anterior mediastinal area (the chest) and : ‘a large tumour was exposed, part of which surrounded the internal mammary artery which bled sufficiently to warrent a transfusion of 2 units of blood.’  It was so entrenched they could not take much out. The best bet was to try to kill it with chemo and radio.

I have all the notes, awkwardly typed and tippexed in the style of the time. The scariest part says:  ‘it is not certain whether the presence of pleural effusion containing a large number of lymphocytes makes it absolutely certain that the pleura are involved in the disease process.  If this is so, the patient has Stage 1Vb of the disease and the prognosis is rather poor.’

Take note, my kiddies!  You so easily could not have made it into this world.

The following paragraph says ‘The patient and parents have been told one diagnosis although a more detailed analysis of the possible prognosis has been given to the parents alone.’  Eek.  I did notice people were being a bit odd around me.  Rather too nice and spoiling me.  But no one ever told me it could have been that bad.

After three weeks in hospital, I went home. My mother nursed me tirelessly. She has always understood ill people. I will tell you a story about my Mum. She spent three weeks in hospital with Scarlet Fever when she was three. The first day she came home, the whole family ate lunch around the table, and then she was sent up to bed. Nobody went up with her. She remembers going up on her own to the cold bed. She was three. 

I look back and see what she did for me as a true labour of love. She would cycle into town first thing to buy fresh food. Unfailingly upbeat and energetic, she would bring me porridge, fishy on a little dishy, small portions of vegetables, plain and simple. She brought me fresh pyjamas and sheets, warm flannels, water, lavender bags, books. Never in a bad mood, she calmly and determinedly with all these things transferred her strength to me.  The good old-fashioned approach, even for then. But I know it made all the difference. Leaning on her, I could soon manage laughably slow, very short walks of about twenty yards along the river. Each step took us about seven seconds. Then we would stop to breathe.

My mother has obviously always thought Mother’s Day is a pile of commercial crap, who doesn’t, but hey Mumaloo, Happy Mother’s Day!

(The name Mumaloo comes from a postcard that my Dad sent home from far-off climes, when I was about four, that said

‘Mumaloo oh Mumaloo,

Guess what Dadda’s gonna do?

Sail away across the sea

And be back in time for Sunday Tea.’

He always was well good at poems, my Dad!)

My strength increased.  I remember the felt-tip pen markings on my chest for each radio session. I can recall the intelligent kindly eyes of Dr Rees as he pointed out murky shadows and dark streaks on X-rays. I can still feel skinny shaking fingers of nervous medical students on stomach and glands and breasts.The Vincristine caused intense crippling pain in my head as soon as I raised it off the pillow. I spent several weeks head down but played the flute in that position and read a lot.  Tentatively back at school part time, I remember bursting into exhausted tears during registration one morning, and my kind teacher rushing out for a pot of tea.  A ‘friend’ said ‘Is it true you’re losing your hair?’ stroked my head, and went ‘UGH!‘

I visited the Haematology clinic for two years, every Thursday morning . We felt freakily lucky to be in Cambridge with the best specialists in the field. There were people coming to this sought-after clinic from Yorkshire, whilst I just had to buzz up the road on my new moped!  I can still see now the waiting room, the poor grey-faced peeps. The way seriously ill people move, conserving energy, the weakness. The way the relatives curve themselves round their loved ones, trying to take their pain from them. The patience with which these people wait. I heard the quiet sighs of frustration, but I never once saw a patient get stroppy or demanding to be seen. We all felt grateful to have such clever people affording us the fruits of their arduous training. We would await our turn.

My mum came across some articles about clusters of Non-Hodgkins Lymphoma and Acute Lymphoblastic Leukaemia in young people who had swum near Winfrith power station. Similar clusters were being found up in Cumbria around Sellafield.   We kept looking into that, and I still believe nuclear contamination caused my illness.

The irony of it all now?  That the cure then has been the cause now.  My new cancer is in the same place as the radiation I had then.  But I had thirty good years.  I’m not complaining.

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Warrior Man

My friend Annie turned up at green tea time today (I used to say coffee time) clutching a dark chocolate cake and a little warrior.  He is made of bronze, fits in the palm of my hand and was made by her late father, a wonderful sculptor.  The warrior’s rectangular shield is held at an angle across his body resting on one muscly thigh.  The other leg is flexed back.  He’s looking through a straight visor in a pointed helmet.  There are broad shoulders but no arms.  The metal feels cold and heavy.  He was made as a pawn for a chess set.  I don’t think Mike finished the set.

Apparently Annie’s mum woke up today and said, ‘I know what we have to send Hester.’  I am hugely touched by this. And he really does look as if he is ready to defend the fortress.  He is definitely not a panicker.  Knows his own mind and will remind me to know mine.

He is  accompanying me into battle on this the first day of chemo.  I tied a lace around him and attached it to my jeans.  He is coming with me wherever I go.  When I am through this I will give him back, as he will be experienced and can accompany others.

When Fred wakes up I will get the photo of Warrior Man from his phone and upload it.

ps, did have a bit of chocolate cake even though mainly am eating strawberries, quinoa, almonds and green tea.

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First chemo

In the car, we discussed the name for the breast blog.  ‘I need a better name than just The Breast Blog,’ I said.

‘You should call it ‘The Breast Blog in the World,’ said Fred.

It’s perfect.  Like finding the right name for your child.  It made me happy all the way there.

Arrived at half past two.  They called us into the ‘pod’ about an hour later.  I lay on the bed with the back up.  Fred had the chair.

My nurse, Carolyn, was really informative, obviously loves her job.  Two nurses have to check obsessively all the time that you are the right person.  Name, date of birth, first line of address, only then are the drugs forthcoming.

The pod was full of peeps.  The man next to us had been there since nine in the morning.  The young girl opposite had a cold cap on.  It can slow down hair loss.

Carolyn put the cannulla in a vein in the left hand, taped it on neatly.  ‘Do you not put it in the elbow?’ I asked.

‘Well, better in the hand, in case of a bad local reaction… the further down the limb the better,’ she replied.

‘Worst case scenario, amputation, you mean,’ I realised.  She nodded.  It’s the reality.

I clutched Warrior Man in my right hand.  She put through a bag of steroids which help prevent an allergic reaction to the drug.  She gave me an anti-sickness pill.  Twenty or so minutes later she flushed with saline for about twenty minutes.  Then she put the bigger bag of docetaxel on the drip, covered in a dark brown bag as it is sensitive to light.  I must say, it had a bit of an ominous look.

The nurse said she would stay with us, as if you are going to have an allergic reaction it will happen usually during the first few seconds.  All went well, though.  I felt nothing, just the cold going up the arm, and a bit light-headed.  And then suddenly giggly, as Carolyn said the wig lady had retired, and Fred said, ‘don’t worry, we’ve got lots of wigs at home in the dressing up. You could wear the big curly blonde wig.’  He seemed really chuffed by this idea, a blonde wife at last.  Really had quite a massive laugh.  Carolyn had warned us about the euphoria from the steroids.  You have to be quite careful not to succumb to giggling wreckdom for too long, or you can crash again quite badly.

So there I was, trying to quench my laughter.  Whenever Fred said annoying things I pointed Warrior Man at him which got us laughing again.   We were watching the lovely girl with the cold cap on.  Fred was reading the chemo booklet about hair loss still.  He said, ‘Oh look, you lose all your body hair.  That’s good, I suppose?’

It must be recorded here that both of us simultaneously invented the idea of the muff-protecting cold cap.  Don’t try to claim it for your own, Fred!   We thought how funny it would be to turn up next time with a prototype.  I mean, who really wants to save their pubes? Apart from me I mean?  Maybe lots of people.  This thought reminded me of the Happy to be Hairy poem, Ancestors by Adrian Mitchell. ( If you want to read it:  http://wonderingminstrels.blogspot.co.uk/2000/04/ancestors-adrian-mitchell.html )

Our uncontrollable spasmic hoots were probably disturbing the man next to us, but he and his wife didn’t seem to mind.

Rode at the front of the top deck back to the Park and Ride.  Still moderately high as a kite nine hours later at four in the morning.  Body feels well oiled, pumping away, beautifully comfortable and energetic.  Hey, enjoy it while it lasts….

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Strong woman crash

I relate the following not because I am proud, please understand, but because my little hard-gleaned truths might help other newly diagnosed ‘strong women’ !  :

Again, I assured my friend who had accompanied me that I would be absolutely fine on my own, why would I not be, and she went to park the car for me before going on into Cambridge.  I went to Oncology, showed them the letter and asked, ‘Is this where I am meant to be for an MRI Scan?’

‘Yes’ the chap said, ‘yes,’ again, ‘and your notes are here so it must be.’  He smiled. ‘We’re expecting you.  Take a seat.’

I checked with the bloke sitting next to me as well.  ‘Yes,’ he said, ‘we’ve been coming for six years.  They come and call you.’

I chatted to him for an hour about his son’s Ewing Sarcoma which he got when he was thirteen.  Then I went and asked again. ‘Look, sorry, but are you sure I’m in the right place?’

This time the chap checked with someone else and said, ‘No,  you were meant to be 100 metres along the road at MRI Reception one hour ago. Your later appointment is here. That’s why your notes are here.’

I ran.  I burst in to the reception, panting ‘I’m so sorry.  I’ve been waiting in the wrong place for an hour.’

The receptionist said ‘They won’t scan you now.  You’ve thrown their whole program out.  You were meant to be here half an hour early.’

‘I’m so sorry,’ I repeated.  ‘I made a mistake.  I did ask if I was in the right place…. it really seemed like the right place.’

‘That’s why we send a map out,’  she said.  OMG did I ever feel incompetent and ungrateful.  She went off and came back.  ‘Well, they will see you, but there’ll be a long wait.’

I waited another hour with around ten people.  Grabbed a Hello magazine.  I was surprised to find that the odd tear was uncontrollably plopping onto the magazine.  Shit.  I’m forty five for God’s sake.  Where had Strong Woman gone?

Eventually I sat waiting outside a locker room in a hospital gown, no clothes, no phone, no bag.  I felt physically and emotionally like an onion that has had layers and layers removed.  Exposed to the core.  I saw that buoyancy is fragile.  You can go under so  fast, it’s ridiculous.  And although you know, you know, you know your friends and family are thinking of you, you can suddenly feel horribly alone.

The scan was interesting enough to distract me from my terrible pathetic feelings.  They give you ear plugs.  You go on all fours on the platform thing, they raise it up (my usual self would probably have started singing ‘You raise me up!’  Just for a laugh), you lie forward and put your head on a foam support, your arms forwards and your boobs through two holes.  The MRI people sort of rummage the breasts to make sure they are in position.  Then they go away.  I didn’t feel alone though now as I was so intrigued.  The machine does not just make knocking noises.  It judders and buzzes and rhythmically groans.  A bit like a rollercoaster when you’re at the top before the big descent.  Fascinating.  Twenty minutes of pure entertainment.  I entered a trance state.

I went back to Oncology, had blood taken, MRSA swabs (nose, roof of mouth, groin, sorry but it is all quite fascinating), talked with a nurse about side-effects, and met another consultant, a really beautiful young doctor.  She made me tell her what I understand so far.  She told me that instead of having FEC-T, I will be having T-FEC.  It means having docetaxyl for the first three treatments, then the other drugs beginning with FEC for the second lot of three treatments.  She explained that women in a recent trial did better with T-FEC.  She explained that the chemo before op is a good choice as any rogue cells which might have gone further into the body will be killed.  It’s safe.  (We hope, I keep adding darkly, normally with a massive chuckle.)

So then the nurse showed me round the ‘pod’ in the day unit, where the chemo happens.  Beds and chairs round the edges, ill peeps and a big drug station in the middle.  I asked the nurse how come the doctor I just met feels confident to overturn a whole team’s decision on the FEC-T.  ‘It’s her speciality,’ she replied.  ‘She’s amazing, really clever.’

She certainly seemed so.  ‘So you would trust her?’

‘Yes, I would.’

Nice and simple.  I will trust her then.

I walked out of there at three pm.  I had been there for five hours.  Totally forgot about food.  Didn’t think it would take so long.

In the car I started to cry again, sob even, and just couldn’t stop.  The news talked about the twenty two Belgian children killed in the coach accident.  I howled for them and their families. You would think this would have jolted me out of my ridiculous self-pitying state, but it didn’t.

Arriving home, I found the post had arrived.  I opened it to find the map showing MRI reception clearly two along from Oncology.  I couldn’t stop crying. Jetting hot tears!  Seriously, this is not like me.  Three slightly cutting remarks from a receptionist and I am to be floored for the rest of the day?

I managed to give a flute lesson.  My adult pupil was kind,  sympathetic, insisted she would come with me and give em what for.  We drank tea.  Then she left.  All my children were out.  The dogs surrounded me, Whisky on my knee, Treacle leaning her hairy bulk against my legs, Huggi laying his head on my knee.  There were plums and strawberries that a dear friend had dropped in earlier from the market.  I phoned several friends, all of whom were out!  Then I remembered my sister.  Thank god.  Due to her circs, she can be relied upon to accept crying as a normal part of life.  As she did.  I just boohooed and boohooed and boohooed.

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