Toothless

Noticed over the past couple of days my teeth are going black. Concerned about this as have always had good teeth (only two fillings and these are from childhood). Now I have dark spots on the surfaces of many of my teeth and dark stuff between the teeth and gums which seem to be receeding. Hoping it's just a chronic buildup of plaque which can be sorted with some heavy hygeinist treatment.

Just googled it and found a whole forum of people who said their teeth started falling out after chemo.

Finding this really distressing as I always had good teeth and kept good care of them. Come to think of it, I kept good care of my body too. It's just so fucking unfair.

sliding doors

This is where the blogs split off and go their separate ways. Too many people I know are reading the other blog now. I sanitised it before extracts were published in the Evening Post, taking out anything political (that could get me sacked) or personal (that could get me sued).

I've been feeling rubbish this last week, driving myself mad with jealous, suspicious thoughts. Envious of any female with hair and their own boobs who my husband might come into contact with. I feel like a freak. Hair like a baby and a scarred and mutilated apology for a breast. My life as a woman is over...

This is the sort of thing I can't put on the other blog because I have to remain 'inspirational'...

Bollocks to that....

Release day

For me and - hopefully - for the first of the Chilean miners.

Scores on the doors: neutrophils 0.8,
haemoglobin 10.0. Both heading in the right direction so they let me go. If this trend continues I should be fit for the final chemo on Thursday.

Got out late afternoon, and the sun came out too so we went for a walk round Woolly Park. Took this picture looking out across the lake. Autumn is a beautiful season.

Waiting Game

I am patient - in every sense of the word. Still in hospital. Waiting for neutraphils (white cells) to increase; for red cells to stabilise and for my bone marrow to start producing more cells. Production is slow - yesterday I had 0.2 neutraphils. I need at least 1.0 before they'll let me out.


I feel fine actually. Nice ward. Own room. I've stayed in worse hotels. Food leaves a bit to be desired but visitors have been supplementing with fresh fruit, cake and home-made soup.

I've been killing time with frequent forays off the ward. I am getting to know this site quite well. Yesterday John and I made a great escape off the hospital campus to Mill Lakes. It was a gorgeous day, like summer.

Waiting for today's blood results. Fingers crossed I'll get out soon. Just have to be patient....

Weekend on the Ward

I'm sampling hospital hospitality yet again.  Admitted yesterday when they discovered my white blood cells were down to zero again.

Berman 2 offers superior accommodation, spacious private room plus en-suite shower.

At ONE AM they decided to wake me up and wheel me through deserted corridors to Radiography for a chest x-ray.  Reasons unknown!

They wont let me go until my bloods are back up.  Could be in for the weekend.

Here we go again

Woke to a high temperature (37.9). Waiting for the chemo clinic to open so I can phone for advice. I may have to go into hospital again to get checked over.

This is getting boring. They must be sick of the sight of me by now. And I'm certainly sick of the sight, smells and sounds of that place.

Racking my brains to think of where I could have picked something up; the most likely place is the doctors' waiting room, where I went to renew my fit-note. That involved spending half an hour in an airless space with people coughing around me.

Perhaps for the sixth and final session, I should live in an oxygen tent like Michael Jackson, and only go out wearing a mask. I've still got a SARS mask they gave me at Hong Kong airport, I've also got this this rather fine feline article made for the Venetian ball scene. Some say it's sinister.

Not long to go now. Thursday 14th is my last chemo treatment - three weeks after that I can put an end to this neurosis about germs.

Reunited

This is Oscar with his namesake Oscar 2 - who has recently come home after spending the past 18 months on my desk at work.

My boss brought him round last week with the rest of my personal effects. I've now officially left that Department and transferred back to the bit of Government I worked in before (for complicated reasons involving austerity measures and office closures.)

He also brought gifts, a card, and lots of nice Spanish food, so we had a little leaving lunch here. Thankfully chorizo is one of the things I can still taste.

Oscar 2 is full of beans, and handy for throwing at people. In a previous workplace, he was banned from my workstation because he didn't conform to the clear desk standard. You were allowed one photograph but no soft toys.

Talking of former colleagues, the Nottingham Post is coming to interview me tomorrow for a feature for breast cancer awareness month. Their feature writer is a girl I used to work with 20 years ago when I was a reporter. It will be good to catch up. They're sending a photographer too - better spruce up the wig!

Highs and lows

The mid-point between two chemo sessions is called the nadir - which means low point. It's when blood count is most depleted and energy levels hit rock bottom. It's where I am now. Even small amounts of exertion send my pulse rate racing; getting up the hill in Woodthorpe Park is out of the question. I take comfort in the knowledge that I only have to do this one more time.

Recently when I did manage to struggle up the hill, and flopped down exhausted on the bench at the top, I noticed the man sitting next to me was equally out of breath. 

"Can't believe I used to run up this hill!" I said.

"Me too!" he answered.

Turns out he's a guitar maker who developed lung problems through breathing in wood spores. We were both on steroids so we compared notes.

Funny how through this cancer experience I've connected with more strangers than I ever did while at work, even though my job-title is communications manager!

Accounting for taste

Chemotherapy messes with your taste buds. In some people, they go completely, so eating becomes merely a mechanical exercise with no enjoyment involved.

In my case, sense of taste has become progressively toned down. I have a metallic, acrid tang in my mouth all the time. Eating provides some relief, but is usually a disappointment because most things don't taste as they ought to.

Favourites like bananas and chocolate taste like plastic. Some stronger flavours - ginger, pineapple and a few spices - manage to partially break through, but there is one thing which tastes EXACTLY as it should, and as it always has, and that is Marmite.

Nutritious, sharp and mouthwatering, it cuts through all that chemo crap.  Love it or hate it, thank God I love it. Marmite is masterpiece.

Guess what's on toast for breakfast!

Bugwatch

It seems as though the whole world is sneezing, sniffing, snivelling, right now; and I am neurotic to the point of paranoia about it.

I used to think: "I won't catch that' and was largely right. Now I know a single cold germ could land me in hospital.

If anyone coughs near me I feel violated. How DARE they?

Back on temperature watch after a scary 38 degree reading this morning. It's gone back down since but JP is on standby to take me to hospital if it spikes again.

Have been feeling under the weather the last couple of days. And there is lots of weather;  mostly a grey, oppressive drizzle.

Never mind, we had some glorious sunny days out on the boat last week. We even slept on it twice.

New cleaner is here, quietly going about her business. Marvellous.

Lookalikes (everyone's a winner)

Ed the Red

Ronnie the Rocket

Has anyone noticed the striking resemblance between Red Ed, newly elected leader of the Labour party and snooker ace Ronnie (the Rocket) O'Sullivan?

Both were winners yesterday.

Could they by any chance be related?

Brothers perhaps?

Wedding bells (updated with pics)

It's a day for happy couples and a night for happy coupling! Emma and Rog tied the knot today. They have had a bright cold day for it up on the North Yorks coast. Emma doesn't mind the cold, being a Yorkshire lass. Nor does Roger, being from well North of the border - hence the tartan.

I beat Hello to first picture publishing rights.

Emma's Mum sent me the order of service to follow remotely, so Rob and I sang the hymns. (He sang Bread of Heaven in Welsh!)

Had my health and immune system permitted, I'd have been there, doing a reading:

"Love is patient and kind; love is not jealous or boastful; it is not arrogant or rude. Love does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, endures all things......so faith, hope, love abide, but the greatest of these is love" 1 Corinthians 13.

Emma's brother stepped in for me.

It's not often you see the bride playing a euphonium!

Now they'll be on the champagne.

Have a great day, Cruton and Dodge! I'm with you in spirit xxx

Pics: Jim Lee

Five down

ONLY ONE LEFT!!!

FEC felt like an old friend after the nasty yew poison. It's perversely reassuring to see that pink wee once again (FEC contains three chemo drugs. One of them, epirubicin, is as its name suggests bright red and dyes urine the same colour).

Someone said to me the other day:  "You're being very brave. If I was you I'd be absolutely terrified." to which I replied: "You underestimate yourself, if it was you, you'd be brave too!"

Each time I go to chemo clinic or anywhere else connected with cancer I come across people braver than me, dealing with worse prognoses, repeat diagnoses or more ghastly treatment regimes; coping with courage and good humour.

The truth is, it's impossible to remain 'absolutely terrified' for six months solid. There have been moments of  fear, panic and helplessness, and plenty of tears, but there's also been a lot of laughter and times of tracendental wonder when I remember how FEC-ing great it is to be alive!

Finish line in sight

The good news is my bloods are up, liver functioning normally and chest x-ray fine - so fit for chemo on Thursday.

The bad news is I will miss Emma's wedding on Saturday. Sorry Cruton. I will be there in spirit (a gin and vermouth please) and I will pray for good weather.

In between hospital visits we've been enjoying the unexpected warm spell. We've now brought the boat the rest of the way back. Andrew came with us to crew, which was very welcome as I am mostly a figurehead first mate at the moment. Don't have the strength to do locks and ropes although every now and then John lets me steer!

This week's treatment is the penultimate one, the end of this protracted journey now coming into view. Thursday marks exactly six months since Diagnosis Day. Thanks for sticking with me through it!

Maiden voyage

We took advantage of yesterday's sunshine and brought the boat half way home. It's great! Apart from having lots more room, it's got a CB radio to warn the lock-keeper of your approach, and a depth meter which shows how much water is beneath you. It's even got a fish-finder should you want to catch your dinner.

Here is JP skippering. He's grown a beard for the occasion.

Tonight we are going to sleep on it. I love spending the night on boats. The motion of the water lulls you  to sleep and you wake in the morning to see swans gliding past the window. Serene.

And the Colonel was on his best behaviour. We gave him a meal and a bed for the night and he's now left us in peace.

How to get rid of life insurance salesmen

Tell them you've got cancer - they can't get off the phone fast enough! There's been a spate of them recently. Sometimes they make a cursory attempt at concern but mostly they just say 'thank you madam' and put the phone down. They just don't know what to say; it's not covered in the script.

Being at home in the daytime you notice how many cold-calls you get. On the day I came out of hospital someone rang up wanting me to do a survey. I said: "I don't want to do a survey. I've just come out of hospital and I'm feeling rather tired," thinking that would get rid of him, but I underestimated the tenacity of the commision-based tele-salesman.

"Madam, it's a very quick survey and will only take a few moments of your time."

Madam got a bit cross with him at that point.

I am feeling much better - can get up the hill again and today walked back from the hospital. Liver scan came up clear - good news. Also had a chest X-ray - another unexplained appointment - I'm told it's 'routine'.

JP is on leave next week so we might get some boating in. In the meantime we are bracing ourselves for a visit tomorrow by Colonel Sensitivity. Perhaps while he's here I should put him on phone duty?

What the fec?

Oncologist took a look at the list of side effects and put me back on FEC for the final two sessions. FEC is the regime used for the first three cycles which my body tolerated well.

So no more Yew tree poison for me! Result!

She also delayed the next chemo by a week to give me time to recover properly. 

And I've just sacked the cleaner. She didn't show again last week and didn't phone to let us know, so enough is enough. She was fine about it and said she understood.

Got a new cleaner now and have it on recommendation that she's reliable.

Bed rest

Still spending most afternoons horizontal, and invariably when I wake up there is a furball somewhere nearby! Oscar is sleeping in sympathy.

On Saturday I got a letter from the hospital telling me I have an appointment for an abdomen scan. This brought on a paroxysm of panic - what do they expect to find? Is there something they're not telling me?  Then I remembered they said the last chemo affected my liver function - so it's probably that. Ironic after years of probably drinking more than the average RDA of alcohol, if it takes one dose of chemo to mess with my liver! Thankfully livers are resilient and repair themselves quickly. 

Tomorrow I see the oncologist to discuss options for the next dose - originally planned for Wednesday but I think they will delay it by a week.

The scariest thing about the recent spell in hospital was that it brought me face-to-face with the end game of this disease. And although I remain optimistic that my prognosis after treatment is pretty good, it was still poignant and very sad to see such poorly people.

Holiday

Usually at this time of year I go on holiday. I like to go when everyone else comes back. It's cheaper, less busy and cooler.

The pic was taken last September in the Ukraine. It shows me on a rather large trike on Yalta beach. The trip was the latest in a series of Clare-and-Emma adventures. We've done Hong Kong, Morocco and Romania in recent years.

This year I can't go abroad, of course, as need to stay close to Nottingham City Hospital, so am enjoying other people's holidays vicariously instead. Joy's just got back from New Zealand, and Jules is off again today to Majorca.

The boat, however, provides the perfect staycation. Today we've been for a walk down to Beeston Marina to choose new moorings. Proves I must be feeling better.

While the cat's away..

On Saturday night while I was in Purgatory the house survived an invasion by 20 twenty-year-olds.

We handed over the house to John's daughter for her 20th birthday party - theme The 90s.  Funny - the 90s seems like yesterday to me but to them it's their childhood.

I was quite glad I was out of the way in hospital with other things to worry about. JP stayed at Gerard's and pitched up at 9am to find the girls already clearing up.

Seems a good time was had by all, no damage done, and the neighbours are still speaking to us. I keep finding bangles and pink hairspray everywhere!

Been horizontal most of the past couple of days but slowly recovering. Had a blood-test earlier and my bloods are on the up and up. It's reassuring to know that if I pick up a virus I can now fight it off myself.

Home again

Released into the custody of JP. These are my homecoming flowers. Thank you for all your messages of support.

The last 12 days has to be the most frightening episode of this cancer journey so far. I felt as though I'd been poisoned - like Litvinenko after the Polonium 2-10. And it went on and on and on until the eventual trip to hospital on Friday.

Saturday night on the cancer ward, I thought I'd died and gone to Purgatory. My drip machine was faulty, and every fifteen minutes or so would bleep, waking me and anyone else in the vicinity - like some kind of sleep deprivation torture. Added to that, the night was punctuated by groans, moans, sobs and the laboured rasping breathing of someone in the last stages of life. She died the next morning. Maureen RIP.  Earlier that evening, she and her husband asked John to witness her will.

Things got better from there on as I got to know some of the other patients. There were some very poorly people there; Maureen was not the only one to die over the weekend. But every single person I met was positive and resourceful. And the nurses, of course, were angels.

Opposite me was a 21-year-old girl with a rare cancer. Can't remember what she called it but there is only one other person in the UK with it. She was brave and bubbly. There was a young lad in one of the side rooms who just wanted to hear guitar playing - so they brought musicians in to play to him. 

My sore mouth struggled with the hospital food, so JP brought me runny porridge in the mornings, Rob came bearing jelly and Jules brought home made soup. As the effects of the poison and infection wore off  I started to feel better.They sent an excellent junior oncologist to see me - someone with people skills and empathy. We talked through my options. Nobody is going to force me to have another dose of Docetaxel if I don't want to. There are other drugs and reduced doses.  

Docetaxel, I've learnt, is derived from the Yew Tree. Should have listened to my mother when she said "Don't eat the berries - they're poisonous!"

Life at the Hotel Winifred

Doctor: 'I feel less worried about you now I've eye-balled you.'

Me: 'Why?'

Doctor: 'You're alert and talking! Your chart looked pretty grim. How are you anyway?'

Me: 'Better than yesterday but I'm still getting the shivers.'

Doctor: 'well you've got a nasty bug and you've got no immune system. If you weren't on anti-biotics you'd almost certainly die!'


That was yesterday. No sign of any doctors today but the shivers have gone and I feel almost normal!


And there is a guitarist on the ward and it's not John!


Winifred 2 is a derelict ward in the oldest part of the hospital. They put people here when the proper wards are being cleaned or decorated. It's kind of half ward half store cupboard. Most of the bays are full of hospital junk.


Never mind. It's doing its job. Blood count's on the up and temperature's getting cooler. Not sure when they will let me out but will keep you posted.

Change of Scene

Once more I am enjoying the hospitality of Nottingham City NHS Trust - Winifred 2 Ward.

After ringing the chemo clinic daily and being advised to 'sit tight' today someone said 'come in and have a blood test'.  So I did.

Turns out I've been battling an infection with a white blood count of zero.  No wonder I felt ill!

They are pumping me with I.V. antibiotics.  Dictating this to JP so he can update blog.

Temperature watch

Spoke too soon. Not out of the woods yet. Shivers and shakes returned, and for the past couple of days we've been monitoring my temperature every few hours. If it goes beyond 38 it means a trip to the hospital. So far although it has teetered tantalisingly close it has not quite reached that magic number.

I've been on the phone to the chemo clinic alot. The last nurse I spoke to said in view of the severity of my symptoms they might lower the dose next time. Good, because there have been times these past few days when I've wondered how the hell I can get through one more treatment let alone two. At this rate I will be limping across the finish line.

Oh the positive side, I've had some nice chats with people on cancer helplines. The house is full of jelly and we're having an Indian summer!

Out of the woods

Major triumph this afternoon - made it to the top of the hill in Woodthorpe Park, after being wiped out all weekend. This is the view from the top. Hard to believe it's in the middle of a city.

Thanks to those people who have contacted me wishing me well after the last blog. After getting off lightly with the first three chemos, this drug seems to bring on the entire symptom list from shivers and shakes and aching joints to red raw skin patches and an ulcerated mouth, all accompanied by a debilitating weakness. It's as though my body, which has coped so well for so long, is finally screamng "ENOUGH!"

It's good news for Oscar though, I wasn't up to taking him for his vet appointment this morning. He loves it when I'm ill. He seems to think I am moping around soley for his benefit.

So I missed all the fun with the boat - now safely in Newark where it's having its engine serviced. When the boys were moving it they met someone who remembered it from 1978! Perhaps it's a punk boat.

In the wars

Just when I thought I was getting away with it I woke up yesterday thinking I'd done ten rounds with a prize-fighter, every joint in my body aching and my mouth feeling like it had been swilled out with acid.

So I left the boys to tackle the tidal Trent while I nursed my malaise.

Today things are marginally better but it's still taking a while to mobilise and chewing even the tiniest morsel is painful. I'm craving soft sweet things that are easy to eat so JP has gone out to get me rice pudding and jelly.

By comparison with the first three treatments, this is hard-core chemo-shit. Forget stoicism, I cried like a baby yesterday.

It will pass......

Braving the bank holiday traffic

When we arranged to bring the boat back from Lincoln tomorrow I envisaged a gentle tootle down the Trent, with JP and brother crewing and me relaxing on deck in the warm August sunshine.

Turns out we've got to tackle the tidal river which means getting up early to catch the tide. John's been researching it and scaring the hell out of me with tales of running aground on mudflats and colliding with sand-barges - like the one in the pic. My thoughts are now plagued with visions of capsize, ship-wreck and disaster.

Am I crazy to be embarking on this voyage when really I should be resting at home?

Trouble is, today I am suffering from Chemo Brain - when everything seems impossible - unlike Steroid Brain, when anything is possible.

Four down

Only two to go now. Two thirds of the way through. Just six weeks from now I'll have had the last chemo treatment - hooray!

New drug  all fine and dandy. No bad reactions so far. Slept all afternoon - making up for steroid-induced insomnia last night.

Good news about boats too - we pulled out of the other one we looked at -  it needed too much work but survey much better for this one so we're going for it. It's got a cabin fore and aft so we can take the girls away with us. Can't wait. This boat is Norweigian and it's sea-going! Dubrovnik here we come! (Well, maybe not just yet. Got to get it back from Lincoln so first stop Newark.)

Our boat surveyor is a guitarist in the band JP's joining. The boys are jamming now, preparing for gig on 5 September. Pub carpark in Ladybay - if anyone's in the area why not come and watch?

The youth of today

Have you noticed how you can tell how young someone is by the number of extra vowels and consonants they insert in words?

Ammmaaaaazzzziiinnggg!!!!

Funny because a decade ago young people invented short forms 4 txt msg purposes - which made sense for economy and speed - especially in the days before predictive text. 

Now they elongate words for extra emphasis.

Perhaps its all part of the natural evolution of language? Or pollution from across the pond?

Call me a fuddy-duddy, but I find it kind of aawwwkwaaaarrrddd reading this stuff!

All  apropos of nothing, at 7:30 in the morning. I don't sleep much on steroids and random thoughts pop into my head all night.

Random. Now there's a word I like - so thanks young'uns for reviving this one.

Off to chemo at ten. JP coming too. A bit apprehensive about this one - it being a new regime - so as always positive thoughts etc. greatly appreciated.

Star patient

I posted an idea in the Oncology suggestions box: if appointments are running an hour or more behind why not send an SMS text message to outpatients so they can arrive later, stay out for longer and don't have to be so patient in the waiting room? Wonder if they'll go for it?

Everyone (oncologist, nurses etc) is impressed with my progress. All the blood tests came up good. I feel like I've just passed all my exams with an A star!

Tomorrow is the first dose of Docetaxel. We saw someone reacting badly to this drug last time. He couldn't breathe and they brought him oxygen. Scary stuff. But another guy on the same drug was so laid back he slept through the whole thing, so it's horses for courses.

To minimise the risk of an allergic reaction you take a double dose of steroids starting today, so I'll be twice as hyper. They give you an illusory feeling of invincibility. It's like Prozac without the wait. The results are instant. On steroids, I can do ANYTHING!

Worry Hour

"Most of the things I worry about never happen. Many of the things I don't worry about do. I find this very worrying!" Rabbi Lionel Blue

Sometimes, I wake up worrying, and I know without looking at the clock that it is 4am. Worry Hour.

This is nothing new. Worry Hour used to feature work triva; worst case scenarios playing out in my brain. Events I'm running going hideously, humiliatingly wrong. Situation Normal All F.U.

These days, it's all about cancer, and every twinge is terminal.

I have an ache in my abdomen: STOMACH CANCER!
A sharp pain in my temple: BRAIN TUMOUR!
An over-large freckle: MALIGNANT MELANOMA!
A numbness in my arm and leg: OH NO - I'VE GOT MULTIPLE SCLEROSIS AS WELL!!
Chest pain and racing heartbeat: HEART-ATTACK TOO!

And this is an interesting insight - because this must be how hypochondriacs feel all the time!

Worry Hour lasts exactly one hour, after which I go back to sleep, and when I wake up the sun is shining, birds are singing and all's right with the world.

Next week it's back on NHS time. Monday: blood-tests; Tuesday: oncologist; Wednesday: chemo no 4. It's a different drug this time - docetaxel. Some people report more side-effects with this one. We'll see.

Is my cat bulimic?

Oscar has to go to the V.E.T tomorrow. Recently he's been eating like a horse then shortly afterwards been sick as a parrot. He is also getting very thin.

Perhaps he's got an eating disorder? I blame advertising. He is bombarded daily with airbrushed images of 'perfect' felines. I tell him he is beautiful but he doesn't believe me.

We hate going to see the vet - nice man though he is. It's all the trauma around getting Oscar in the cat-carrier and transporting him there. The practice is just round the corner so Oscar could walk himself there if he had a mind to, but he has an aversion to going anywhere near the place.

Perhaps this phobia stems from the time when we had a vet called Deville. No kidding. Great name for someone who works with animals. Mr Deville liked it so much he had a personalised numberplate - DVL666.

The first vet I ever took Oscar to did a thorough examination, looked at his teeth, weighed him, inspected his fur then said: "He's a nice little fella isn't he?"

Asked if the cat's weight was normal he thought for a moment then said: "He's not a gigantic cat, then again he's not a titchy cat either."

How many years in vet school?

FAQs 2

Some people have asked for more details - particularly about chemotherapy and the side effects so here goes: (skip if you don't like detail!)

Q. How is chemo administered?
A. In my case intravenously through a drip in my hand. This takes an hour and a half, during which they administer five drugs (three chemotherapy and two anti-sickness) and a saline flush. You go as a day patient and sit in a room with five other chemo-patients. You can take a friend. Some chemos take longer. I've heard of them taking up to eight hours.

Q. How often do you go?
A. Every three weeks for a total of six sessions. My last session is 6 October.

Q. Doesn't it make you really ill?
A. It does with some people but it hasn't me. The main side-effects are hair-loss, sickness/nausea, sore mouth, tiredness, aching bones, increased risk of infection, skin dryness, loss of taste and something called 'chemo brain'. Of those I've had the hair-loss and mild fatigue. I've not had a sore mouth but have had sore eyes and a sore bottom! I can still taste food and am eating loads. Blood count gets low which causes immune deficiency but I have not caught any infections so far.

Q. What's 'chemo brain'?
A. It's a fuzzy-headed feeling where your brain doesn't work properly. Not sure how to differentiate between this and normality!

Q. Do you have to be in isolation so you don't catch infection?
A. No, but there's a window between 7-14 days after treatment when you're most at risk. I avoid busy places like pubs, public transport, offices or anywhere you're rubbing shoulders with people. If I'm seeing people I check first that they're bug-free.

Q. What happens if you catch an infection>
A. You may have to be hospitalised and given intravenous anti-biotics or anti-virals.

Q. Can you exercise?
A. Gentle exercise is good. They recommend a daily walk while on chemo. I've also been cycling. Sadly not allowed to swim due to risk of infection.

Q. Has all your hair gone?
A. No but what's left is very wispy like a baby's. It will grow back, probably thicker than before, and may well be a different colour and texture. Hair often grows back wavy; they call it chemo-curl! Body hair falls out too. I've still got eyelashes and eyebrows but these may go before the end.

Q. How does chemotherapy work?
A. It flushes out the whole system, attacking cancer cells. But it's a blunt instrument; it also attacks other fast-growing cells such as hair follicles and the lining of the mouth.

Q. Any tips for minimising side-effects?
A. Take the anti-sickness drugs they give you for the first three days. Be kind to your body; don't overdo it and get lots of rest. I find alternative therapies help (acupuncture/hypnotherapy/yoga/reflexology*). Eat lots of fresh fruit and veg. There's also the ice-cube trick; if you suck on ice-cubes or drink ice-cold water while they're administering the drugs, you're less likely to get a sore mouth, apparently. Works for me so far!
*You can't have massage while on chemotherapy because it stiumlates lymph glands, but foot massage is fine.

Q. Will the side-effects get worse as you have more sessions?
A. Possibly although I've not noticed this yet. For the final three sessions I am on a different drug which may have different or worse side-effects, but may not.

Q. After chemo will all the treatment be finished?
A. No I will have a short course of radio-therapy (which I'm told is a doddle compared with chemo), then I'll be on hormone tablets for a few years because mine was a hormone-fed cancer.

Q. Have you completely healed up after the surgery?
A. Mostly although recently the scars started stinging again - might be the chemo reaching parts other medications don't reach. When they operated they couldn't get enough back muscle to in-fill so they put a tissue expander (basically a saline bag) into the new boob. This gives me jip from time to time. Once I've finished all treatment they will replace it with a small silicon implant so that it matches the other breast.

Q. So you've got to have another operation?
A. Yes but only a minor one. And it helps to remember that some people have this operation for fun!

Not so smart

The SMART car is trying to get in the house again.

Or perhaps it just wants to sniff the buddleia.

Or it's simply seeking attention.

It doesn't need to. Being that shade of yellow, it certainly gets itself noticed. It's also impossible to lose in the car-park.

Work tomorrow! Can't believe it's Sunday night already. Where did that weekend go?

Thank goodness it's Friday

Have been feeling a bit weak and woozy this week - but it hasn't interfered with my attempts to alliterate.

Maybe this weariness is because I've gone back to work - sort of. Have been putting in a few hours a day from home as part of a phased return, made possible thanks to the new fit-notes and a flexible employer.

First day made me realise how rusty (or freed up?) my brain has become. But it's been good to re-connect with colleagues and to focus on something other than recovery. It also helps structure the day. Have been working mornings and clocking off at lunchtime.

So now it's officially the weekend and I've got that Friday feeling again! Hoorah!

What will the weekend bring? We are entertaining a visitor from Wales tonight. He's actually Rob's visitor not mine but Rob forgot he was coming and booked to go away - paradoxically to Wales!

I am also going to finish a short story I've been writing. It's about a big, fat schoolyard bully called Derrick Prickles. He gets his come-uppance in the end.

Have a good one!

When this is all over

...and I get the all-clear I'm going to have a big party and invite all blog readers.

Google doesn't make it easy to be an official follower but I keep hearing that all sorts of people are reading this so I did a bit of hit-counter research; currently averaging 500 page views a week including visitors from the US, Australia and the Far East as well as the UK. What started with friends and colleagues seems to have spread to friends of friends and colleagues of colleagues and some people I don't know.

So hello everyone and thanks for reading, whether you're a silent follower or not. (And a special hello to Uncle John and Teresa).

Someone told me yesterday that as well as hair growing back thicker after chemo, skin rejuvenates itself too and looks younger. Something else to look forward to during dark moments.

Charlie doesn't help - this is the latest iteration of the painting. Hideous, isn't it? When he started painting me I had some wild notion that if the picture lost its hair then maybe I wouldn't. It hasn't quite worked. Still, it's a work in progress...

Synchronicity

Have had a very sociable weekend, the highlight being a gathering at Meg and Richard's in Southwell last night. They are living in a converted mill complex with a vast basement-style living room. This made an ideal auditorium because they'd invited quite a few musos.

JP took the Martin, seen here (the favourite instument in this house).

By co-incidence we met some people who are in a band with a guy who is surveying our new boat (someone I picked randomly from the phone book). Turns out this band needs a lead guitarist so John is going to do a guest slot with them in September and take it from there.

It struck me how music is a common language. People turn up with instruments and it doesn't matter that they've never met before; they just jam. It's another form of communication.

I took my tambourine.

We also met a couple who live on a boat down south. They make their living through doing a paper-round once a month, pet/house-sitting, gardening and busking. They don't have many outgoings and seem to have such a happy relaxed, life-style.

Nice to know there are alternatives to the 9 to 5, should all us public sector workers end up jobless.

Three down

Three to go. Half way through - yay!

Even felt well enough afterwards to go to the marina and look at boats. We are thinking of upgrading to a slightly bigger version which would mean we could go away on it comfortably for a week or so.

This is the one we are looking at. It's got a fixed roof (better in the English summer), a cabin you can stand up in and lots of wooden bits. I like the steering wheel - proper nautical!

And if the age of austerity kicks in big time, we can always live on it!

Which means we'll be trading in Sally Slipknot Anyone want to buy a boat with attitude?

Why I believe

(One of the reasons).

Wind back 20+ years to an isolation ward in QMC, where I am being treated for killer illness no 1. Earlier in the week I've been admitted with meningococcal meningitis and septicemia. "When we brought you in you were an hour from death," said the consultant.

Now, several days in, I have awareness, and although up to this point I've been getting steadily better, today I have taken a dip. I can feel myself failing, I see my life slipping away and I feel very very frightened.

It's Sunday night and the nearest doctor is several bleeps away. Visiting hours are over and the nurses are small comfort. They talk about getting me a blood transfusion in the morning. Then they leave me alone with my hellish thoughts.

"I'm going to DIE"

This is 1989 and there is no 24 hour telecommunication. I don't possess a mobile and even if I did it wouldn't be allowed in hospital. My only recourse is to pray.

In desperation I say the same words over and over again: "I'm scared. I'm scared. Please help me. Please help me. Please. Please. Please."

I don't know how long this lasts but after some time a sort of calm sets in. It's impossible to maintain that level of anxiety indefinitely.

What happens next is remarkable. Something wraps itself around me. Something soft, warm and utterly comforting. Like a fleece blanket warmed to just the right temperature. This thing is entirely benevolent. I feel joyful and protected. And in this thing I sleep. I sleep for hours. I wake refreshed. I wake believing.

All that happened a long time ago, but the memory is still lucid. I don't know what this thing was, (God/angel/spirit) but I am sure of one thing, it was external. It came from without, not within. And it came at a time when I had nothing in me but sheer fear.

Sceptics may have logical explanations. Endorphins perhaps, produced by the body in extreme circumstances? But how dull it must be to believe that all we see and hear is all there is. How limiting. The important thing for me is that I knew.

I had felt this thing before, in another moment of despair, so I recognised the feeling when it came. I have not felt it since, although something in me longs to.

It's a cat's life

JP says I mustn't sack the cleaner, even though she arrived an hour and a half late (doctor's appointment). So instead of her marching orders I gave her a cup of tea. She is trying to distance herself from Sweet Smiley Boyfriend. The Home Office have helped with this by moving him to Heathrow.

Chemotherapy is meant to be cumulative (each bout leaves you feeling that little bit worse), but if anything I've felt better this cycle than the first one, the only side-effects being fleeting fatigue and an eye infection. Third dose is next Wednesday so we'll see if this trend continues.

After four months of enforced leisure, I'm starting to get just a teeny bit restless. I even contacted work to see if I could do some bits and bobs from home. Can't go into the office - too many bugs - but could do stuff remotely if systems allow. Not sure how much there is to do though because the Government is closing us down.

Oscar, on the other hand, has no qualms coping with a life of langour. He has been in this position most of the day.

From the sublime to the ridiculous

Nottingham City Council has created wildflower areas in Woodthorpe Park, and they are beautiful. The park has played a pivotal part in my recuperation; a place to walk, rest and observe. I assess my fitness by whether I can get up the hill without stopping.

Speaking as a resident, I'm impressed with the City Council. They're good at doorstep recycling, and even collect bulky items. They keep parks and gardens nice and they lay on festivals and free stuff over the summer. They have shipped a load of sand into the Square and created a beach area. Great for kids.

Some employees speak less highly of the Council. I was talking to someone who recently moved into their new HQ building. He says it's swish but has ridiculous rules:
- The carpet is colour-coded and staff can't walk on certain colours
- Employees are not allowed to keep food in the fridge
- Eating at desks is banned; you have to go to a special room, even to eat a mid-morning banana or a bag of peanuts.
- If you hang a jacket on the back of your chair a floor-walker will confiscate it.
- You can't leave a bag under your desk, you have to book a locker for the day.
- People whose special needs require a lowered or raised desk can't sit with their teams but get ghettoised together in a different area.
He said adhering to all these rules wastes alot of time.

This all seems a bit barmy to me. If rules are seen as arbitrary or pointless they alienate the workforce. Speaking as someone who's fallen foul of clear-desk policies in the past I think such measures discriminate against creative people who tend to be more messy.

Phone freakery

The landline rang at ten past midnight, jolting us out of the first stages of sleep.

I picked it up. Said "hello." Nobody there. I depressed the receiver in order to dial 1471, but the line stayed open.

Then a female voice with a faintly discernable American accent hissed: "You're gonna die," and put the phone down.

1471 revealed no caller's number.

Freaked me out a little, I can tell you, despite JP's assurances that this would be either completely random or a wrong number, and nothing whatsoever to do with me.

Why do people do these things?

She was right about one thing though, whoever she was. I am going to die. So is she. We all are. It's the only sure thing.

For the moment, however, I prefer to concentrate on living.

The boat that rocked

We took Sally Slipknot for a little sail at lunchtime out to Shardlow. Here she is looking serene in the sunshine.

It wasn't always so. We bought her a year ago from a geezer with a lot of home-made tattoos. He advised us how to avoid mooring fees by moving on every two weeks.

Perhaps the name should have been an indication. Slipknot - called after the thrash metal band of the same name. When we phoned up to register ownership there was a long pause on the other end of the line then the man from British Waterways said: "Slipknot. We know that boat well."

Turns out she'd had several ASBOs.

We also noticed that whenever we went anywhere in her we got hailed loudly by certain other river-users. Usually the ones you hear long before their boats come into view.

"I've had some times on Slipknot!" one said wistfully. Seems she was a party boat!

Her life may be dull by comparison now but at least she has loving parents and a nice secure marina to call home.

101 uses for a wig

Forgot to take a wig-stand to Somerset so had to improvise.

Talking of wigs, when we took a stroll round Watchet Harbour I noticed I wasn't the only one wearing one. There were drag-artists out collecting for Carnival. This got me thinking about the many and varied potential functions for a wig. Here's a few to be going along with:

- Alysa (formerly Alister) wears them to enhance her new gender identity
- Brian two-doors-down used to collect maniquin heads from skips, put them in his upstairs window and dress them up in wigs and hats. When he took the display down passers-by complained they missed the show.
- Some people wear curly ones while getting very drunk and pretending to be scousers
- Sonja (not her real name) has several wigs from when she worked for a private detective agency.
- Becky's step-mum's dog performed unspeakable acts with hers
- The court of Louis XIV wouldn't be seen out without them
- When Joy worked as a nanny for Orthodox Jewish families in London, the women would don wigs to cover their already luxuriant hair before leaving the house. Think it's a religious thing.
- Andre Agassi wore one to play tennis.
- We saw a lot of silly red and white ones during the World Cup.
- Judges wear full-bottomed wigs on ceremonial occasions.

Any more for any more?

Meanwhile I cycled seven miles today - not bad for a chemo-head!

Stampede!

When I went for my morning constitutional across the fields, the cows coolly let me pass, but when I came to return the mood had changed. First one began to follow, starting off slow then breaking into a gallop. Others joined the pursuit, and before I knew it the whole herd was hurtling towards me.

I cleared the gate with seconds to spare. Shows I can still run.

Here they are, shortly after the charge, looking like butter wouldn't melt.

Just what the doctor ordered

It's so healing here, just breathing the air does a power of good, like taking in sweet nectar.

Walk three fields and you can see the sea in one direction and Glastonbury Tor in another - just discernable in the haze on picture two. The cows let me pass this time.

And even the cider is pure!

Room with a view

We have retreated to my Uncle's rural idyll in Somerset for a few days. This is one of the views from the house. There are ponies frolicking in the next field and geese gaggling round the watering hole.

The clouds are dispersing and weather's looking favourable for the next few days.

Doubtless we'll find our own watering hole later. The cider's good round these parts. Wonder how it mixes with steroids?

The conundrums of a cosmic cleaner

We hired a cleaner to help make life easier through my recovery. She turned up, larger than life, and blitzed the place. She can come again, we thought. Since then, it's been like this:

Week one: She corners me in the kitchen with tell me about her love-life. She married a China-man, but didn't love him. She loved an Iranian, but couldn't be with him. She divorced, and is now in love with a Nigerian, who's gone back to his wife, so she's waiting for him. In the meantime she's dating another Nigerian.

Week two She tells me she's a medium and talks to the dead. It doesn't surprise me - I guess they, like me, are a captive audience. I'd rather she didn't conjure up any ghosts in my house though. She says the Dyson will do her an injury so she brings her own Henry.

Week three: The first thing she says on arrival is: "I could kill me sister.." I sense a drama coming on and decide to absent myself. More cleaning gets done that way.

Week four: No show due to illness. Fair enough.

Week five: She brings a friend. Double trouble? More like Buy One Get One Free. They do twice as much cleaning for the price of one.

Week six: No show. Car broken down. Fair enough, but I wonder if she may be unreliable. We decide to give her one more chance.

Week seven: She brings her sweet Nigerian boyfriend. He's very shy and smiley but he doesn't mind the Dyson. Makes a good job of the hoovering.

Week eight: She is fascinated by Charlie, the artist, and stays a while after her shift to watch him work.

Week nine: (this week). Shows up late. Sweet smiley boyfriend has been arrested. He's currently in an immigration detention centre.

The saga continues. Watch this space .....

It is nice to have clean windows and dusted surfaces.

Two down

ONLY four to go... That's a third of the way through.

I can do this!

Still only a Class D hangover. No swingball this time on account of the weather but have found chocolate and Ealing comedies to be therapeutic.

Bought some new headgear on line - including this rather fetching little red cloche hat. Makes me look like a baroness from the roaring 20s - all I need now is a silver cigarette holder.

On steroids for three days. Among the listed side-effects are: excitability; delusions; euphoria; moon face; hirsutism.

Perhaps if I overdose on them the hair will grow back!

Any fool can wear a white coat

Just been to see my oncologist who was mysteriously absent so they sent someone from the subs bench out instead. Someone who appears to have missed out on her basic training.

After telling me I was 'fine' she said: "have we taken a blood sample from you today?"

I told her they'd done one yesterday and should by now have the results, hence the purpose of my visit. She went away to find them, came back and told me once more I was 'fine'. Begs the question - how did she know the first time if she hadn't looked at the results?

She also asked me if I had my next chemo booked in. I told her it's tomorrow, hence the purpose of my visit.*

Not sure she even knew who I was let alone how I was.

Not convinced she knew what she was doing .....

She finished off with: "You're fine.. off you go," and with an exaggerated flurry of the hand, dismissed me.

Some doctors are almost autistic in their lack of people skills. Actually that's unkind to people with autism.

Meanwhile the World Cup may be over but not in our street. Someone's bought the neighbour's kids a vuvuzela. It'll be b flat major all summer..



* Before each chemo you go for blood tests then see the oncologist to get the results and check you are fit for the next chemo.

The artist's way

Charlie (the artist): "Look at my ear."

me: "Your ear's not very interesting."

Charlie: "You can't concentrate for two minutes. You agreed to sit for me so you must be prepared to go through some pain, so sit STILL and look at my ear."

me: "You could at least have got some piercings."

Charlie - looking at picture and shaking his head: "This is going to be a bit intimidating,"

Me: "For who?"

Charlie: "For people looking at it. It's a bit Freddy Krueger."

Great.

He's coming back today for a second sitting. Here is the painting so far. It's NOT flattering!

Paranoid

First time out in public wearing a wig and EVERYONE can tell.

Today, I can read minds, and they're all thinking: "that's a wig!" Every single person's laughing at me - or worse - pitying me.

"It looks great" they tell me at the hairdressers. But they're lying.

Walking down the street on the hottest day of the year, I'm itching to pull the thing off. Then in the taxi with the windows open it's in danger of being blown away. I hang onto my head, and the taxi driver knows. He's thinking "keep your hair on!"

The woman in the wig shop said it would 'settle down'. I hope she's right.

Looking forward to four months time when my real hair grows back thicker than before.

Hair today

But at this rate it'll be gone tomorrow. It's coming out in handfuls.

Oscar has an annoying habit of shedding hairs everywhere, clogging up the Dyson. Now I'm adding to the problem.

Jo the hairdresser is on standby to cut it all off if it gets too much (or too little), but for now there's still enough attached to be viable, just. She will also style the wig for me. Hairdressers are used to this, apparently. There's a lot of it about.

Meanwhile while I still have hair Charlie the artist is coming round to paint me. He used to do mostly abstracts - like the one in the pic - but is diversifying into portraits and wants people to sit. When he asked he implied it might be onerous.

I can sit - I've got time on my hands - how hard can it be?

It'd better be flattering, though!

Angry middle-aged woman

To Messrs Cameron, Osborne (and Clegg),

It was NOT the public sector that caused 'this mess' NOR was it the Labour Government, it was your mates in the financial sector.

Penalise them, not us!

Attack the Civil Service at your peril. In so doing you are biting the hands that feed you. You need someone to implement your policies, such as they are. You will need someone to clear up your mess after the big bonfire is over.

It seems to me that you have come in, taken a superficial look at what's around, and decided to slash and burn all that you see. Anything built up by your predecessors must go.

And that is fine, because you wouldn't know what it's like to try to teach - or learn - in a crumbling classroom. I don't suppose that happened at Eton.

Coalition, my arse! This lot are more right-wing than Thatcher. Anyone who voted Lib Dem to keep the Tories out must be feeling well pissed off.

I think we should take to the streets, like they're doing in France, and bring this bunch of amateurs down. Give 'em a long hot summer of protest and see what they're made of.

Rant over! I feel better now. Have not felt this incensed about politics since the 1980s!

The music room

On Saturday my husband bought me a tambourine to cheer me up. Now I can accompany him on guitar! He is from a musical family, his Dad is an accomplished organist, his brother's a brilliant drummer, and JP of course is one of the best guitarists in the world.

All attempts to make me musical so far have failed. Of the many instruments in this house, three are officially mine; a violin, a penny whistle and a ukulele, none of which I can play. In the 80s, Jules and I once sang backing vocals for a Nottingham band called Big Day. (Remember them? No?). I can still recite the lyrics. Our lines went: "It's Friday night/too tired to face the crowds/where's your party dress?/you used to like your music LOUD!" Sadly Big Day never made it Big and they didn't ask us again!

Now percussion is a different matter because all you need is rhythm, so I have high hopes for the tambourine. And it seems to have worked, because things steadily picked up as the weekend progressed - I can almost feel those good cells multiplying.

Low

JP took two days off so we could go somewhere nice on the boat but I took a dip yesterday and felt too washed out to move much. Think it's the low red blood count. Starting to pick up a bit today.

My problems are nothing compared to Jane's. In the past ten years Jane has had three primary cancers and each time bounced back with renewed zest for life, looking amazing. Sadly in the last few months she developed a secondary which has now metastazied in her brain. There's no cure but she is researching available treatments and is looking at the possibility of cutting edge gamma knife surgery which has proved successful in treating multiple brain tumours.

We went to see her in the Derby Royal, where they are exploring all her options. She is being very brave in the face of such a devastating prognosis. The new hospital is impressive; light and airy with lots of private room provision and all single sex wards.

Meanwhile the list of breast cancer survivors I know is growing exponentially. It seems nearly every day I meet someone new who's experienced it. While mooching round Holland and Barretts recently I got talking to the store manager and discovered she had it seven years ago. She says to pop in for a chat any time I need support.

Salad days

John said I should take a picture of this salad because it looked so colourful.

This is my 'low' week - when blood count drops which can cause anaemia. Feel a bit tired but that's ok when all you have to do is read books in the garden, watch Wimbledon and make salads.

Yesterday the Dean of Nottingham Cathedral came to visit. (I am Catholic albeit not a very good one). We had a nice chat and he gave me a 'Plenary Indulgence'*. Nick thought this sounded like a high-calorific pudding; something full of cream, chocolate and liqueur. So it's summer salad for main followed by a Plenary Indulgence for dessert. Anyway, it was pleasant.

Next week is my 'good' week, when blood count shoots back up and I'll feel almost normal, before going back for another dose. I know this is only the first round, and chemotherapy is cumulative, but it's been a huge relief to have had virtually no side effects. Must be all those positive energies, complementaries plus the odd indulgence.

When Colonel Sensitivity texted for a de-brief I took great pleasure in telling him how well I feel. He hasn't yet replied!



*A Plenary Indulgence is a sort of top-notch blessing. In the middle ages dodgy clerics used to sell them.

Margaret Higgins: 3 September 1952 - 26 June 2010

Margaret, who I knew in Manchester, died on Saturday.

When I arrived in the city in '94 to start a new job and not knowing a soul, Margaret was one of the first people I met. She and her family were warm and welcoming.

They were true stalwarts of the community. All sorts of people with all sorts of issues beat a path to their door and found sustenance there. The Higgins were Christians in the purest sense of the word; giving and non-judgemental.

Last week Margaret phoned to find out how my chemotherapy went. Although very breathless and in the last stages of her cancer, she still found time to ring me. One of her talents was calligraphy and this is a card she made me years ago when I was in a low spot.

Her charismatic faith shone out beacon-like and led her to some interesting places, such as Hong Kong where she worked with addicts and former Triad members, and Belfast where she pioneered for peace among communities on both sides of the divide. In latter years her belief sustained her through each stage of her terminal illness.

She has now gone to meet her destination. She will be missed by many. May she rest in peace.