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 who 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.