Time to move on?

I went for my post-RT check up, and the really really good news is that I'm fine. There's no sign of any son-of-Ridley, and only a tiny bit of scarring in the lungs. Nothing to stop me having a full and happy life from here on in. Which is a huge relief.

Post-Ridley, some Lung Scarring from R/T.

The new Registrar, Dr Ahmed, was concerned at the long time I'm taking to recover, and with that and my alopecia, decided to do a raft of blood tests to exclude further scary things like auto-immune disease and thyroid problems: the results have come back and they are all within normal ranges. Everything is fine and dandy, except me.

Which of course, begs the question, why? Why am I struggling now to simply live a normal life, when a year ago I was champing at the bit to go off and walk for miles and miles across the lovely Essex countryside: and that was when I was carrying my uninvited guest? I was fine when I was ill: now I'm better I'm decrepit.

The answer has to be psychological. To paraphrase Sherlock Holmes: "When you have eliminated the physical, whatever remains, however uncomfortable, must be the truth". And what remains after physical causes are removed, of course, are emotional and psychological factors.

Being an awkward cuss like I am requires a certain amount of strength. It's much easier to go along with the flow, follow the pack, drift. The problem is though that I'm not very good at drifting, I need to paddle. But just recently I've been forced to face a few facts. Like, paddle as hard and fast as I like, the fates have plans for me and they won't be brooked. Like, there have been times when I can't even lift a paddle, never mind steer the raft of life with it, so I've had to accept the help of others to do that for me. And like, sometimes the direction I'm headed in is simply the wrong way to go.

I've had to acknowledge my lack of power and control, and I don't like it.

There have been times when I've been scared that I won't ever get well again, won't ever be back like I was. But I'm better now than I was a month ago, hugely better than I was at Christmas, unrecognisably better than I was back in November. I'm on the road to recovery. Now I have to ask myself, do I actually want to be back like I was?

When you start off in life as a mewling and puking infant, life seems full of possibilities. Then you start to make choices, and each one necessarily narrows the range of potential futures. Each choice seems like a free choice, but they're not, they are limited by what's on offer. And by your own self knowledge, prejudices, and vision. Unless you watch out, you end up boxing yourself in to a space where there's not enough room to turn around. No room to shed your own skin and re-discover things about life. No room to stretch and look around and say, "actually, I don't have to be this version of me, any more".

I haven't done that, yet. I'm not completely boxed in. I have choices.

Maybe I've needed a time of quiet inactivity (with all the stresses of last year moved off to one side) to realise that the future can be different from the past, and I don't have to be constrained by my own habits of thought and action, any more.

My hair's starting to grow back, the sun's starting to shine, my energy is picking up month by slow month. So the question is, what happens next?

A Christmas Message

Christmas Swedish Style with St Lucia

The ceremony of Saint Lucia is an important part of the Christmas celebrations in Sweden.

The celebration seems to blend Christian and pagan traditions: on an early, dark, cold morning in the midst of December, the 13th, the young members of society come with light, music and beauty to the older members of society, as well as to the newly born. It is an ancient ceremony of rebirth and renewal, and about the existence of magic and blessings in life, even in what seems to be the darkest of times. It is also a celebration of the sun, and the human capacity of handling fire – of bending the elements after our own will, like making light in abundance in the middle of Winter. The ceremony is full of ancient symbols, like the stars (pentacles) on the pointy hats of the so called “stjärngossarna” = the star boys.

Lucia, the saint who is celebrated, is a Sicilian martyr who sacrificed her life for her beliefs, and for not having to marry a man she did not love. Traditionally, she is a fairy or a Goddess of light, coming with light and protection for the people after the night between the 12th and the 13th of December, when the dark forces were said to be specially strong.

But pagan traditions around the winter solstice have heavily inspired the current advent traditions in Sweden, as everywhere else. The Lucia procession is a pre-christian, pagan invention, some even say that it has elements from the winter solstice celebration in Scandinavia, being a ceremony which celebrates the return of light and innocence. The winter solstice is on the 21-22 of December, making it too close to the Christian Christmas, and therefor the celebration had to be moved some say.

They might be right, but the 13th of December has for a long time been seen as the night when it is easier for evil and and naughty spirits to enter the realm of humans; a night when the doors between the different dimensions where wide open. For this reason it is a tradition to wake during the night between the 12th and the 13th, to be able to avoid the spirits and not come in evils claws in ones dreams. In the morning the children and youth of the society brought light, and there was singing. Probably some bun similar to the “Lussekatt”, a bun with saffron which is served on Lucia, was served already then. The bun is formed like a pagan sun symbol.

Traditionally the Swedish Lucia should be followed by a group of what we call “tomtar”, practically little gnomes who sing songs about how they sneak into the houses of the humans at night, tasting the food and having fun. They are unfortunately missing in this years Lucia celebration on national TV,  it’s in a church this year, so they skipped the “tomtar”. They probably do not find “tomtar” church-like enough. That is really a shame.

Just like gnomes in other places, Swedish “tomtar” are known to take care of humans, as well as the animals and plants who live on the farms. They also like to play, and love to get attention. It is of course important to show your respect and gratitude to the “tomtar”, especially at winter. Many people for example put out a small portion of the Christmas porridge for the house “tomte”, to show their gratitude and to motivate the “tomtar” to help them in taking care of their home and it’s inhabitants during the coming year as well.

The relationship between the house spirits and their human family is often described as a warm and loving one in the myths and the fairytales of almost all cultures. But they can also play quite some tricks on you, if you don’t watch out and take care of what you have. Without them, life tends to get really hard if you believe in all the legends. Maybe “tomtar” are not everywhere, but I have a feeling that we are really surrounded with beings which we know very little about, who live their own lives, but who often seem to help out. I find it a bit crazy myself, but there has been so many times when I have experienced concrete proof of such help.  So my advice is, the next time you make some nice, hot food for yourself, share a small portion with the beings or spirits who help you – they will love it!




This description of the traditional activities and their meaning comes from Susan Florries (florries.wordpress.com). I was going to write something myself, but as I couldn't improve on Susan's enthusiasm and warmth, I have just quoted her words. Thank you Susan.

2012 and All That

The final post-RT appointment with Dr Ball at the end of November was a low key affair. Apart from the fact that the clinic was running 2 hours late so we were wretched by the time we got to see him (and I don’t suppose he was feeling particularly jaunty), there wasn’t really much to say. Apparently I should have had a chest x-ray, but it doesn’t matter that I hadn’t. It probably wouldn’t have shown anything, anyway.

I had a physical exam, and a chat concerning my interminable anxieties about the length of time I’m taking to recover. Dr Ball said the normal time to recover from the RT I’ve had would be between 4 and six weeks. Later he revised this to between 6 and 8 weeks.

As I write this, it’s been eight weeks, and although I’m starting to recover, I’m still not there yet. My 5-minute walk has been expanded to 15 minutes and then to 20, and I’m getting my breath back more easily afterwards: but if I try and do anything else in my day – like put the shopping away, or empty the washing machine and hang up the clothes – it’s too much. Still, I will improve, and it seems as though clinically, this adventure is finally over, bar routine check-ups. No dramatic announcements this time, like there was at the start.

Travel Hell - Cancer is expensive.

It’s hard to remember back to when I was last fit and well (but unknowingly harbouring an uninvited guest). One sunny Wednesday in April I was worrying over whether we need a new garden shed, hoping the runner beans would germinate and trying to fit in a quick visit to the GP because of an annoying cough. That evening I was admitted to hospital with a massive growth of indeterminate origin in my chest, and on the following Monday was told I (possibly) had a sarcomatiod cancer, median life expectancy 9 months.

The shock and horror was epic. It was too much to take in. I flip-flopped between denial: there had been some kind of ghastly mistake – they’d got my notes confused with some other Carol (despite the fact that I’d seen the X-ray, CT scan and ultrasound) : and being certain I was going get horribly ill and die within months. That this would be my last summer. That I was going to have to leave Godfrey all alone. It was much too much to deal with, and yet I couldn’t just let go of life and deal with my (our) emotions, there were practical things which needed sorting.

The first and most important was, who to tell? And when? Clearly while the diagnosis was still provisional there was no need to alarm anyone. Equally clearly, some people had to know: I wasn’t remotely fit for work, my brain was all over the place and I was prone to well up with tears at random moments. So I told my colleagues. Also, I had private AT clients booked, they had to be unbooked and where necessary, given an alternative practitioner’s name and number. But I wanted to keep the need-to-know group as small as possible, until I had some definite news to report.

This put me in the invidious position of lying to my other friends and family. Mum would ring from time to time, and say “How are you?” and I’d answer, “Fine, how are you?” We’d chat about normal, inconsequential things and all the time I just wanted the conversation to end, because I was fretting that I was missing a call from the hospital.

I was expecting imminent surgery followed by chemo and radiotherapy. I thought that, in the event that something were to go wrong during surgery, it wouldn’t be fair for Godfrey to have to deal with the fall out all alone. So after a few days, I told one of my brothers what was going on. Bill was a tower of strength, support and level-headedness throughout. Finally, after getting wills and powers of attorney done, and after seeing an oncologist who confirmed it was cancer, I found the strength to tell my remaining friends and family. And I started this blog, both to keep them informed and to give me a sense of control.

Did I get it right? Did I say the right thing in the right order to the right people? No doubt I could have done things better, but I was stressed. On the plus side, I’ve learned some things: life is short, good health is not guaranteed, help is there when I need it, ready meals have come on a long way in the last few years, and I am sufficiently narcissistic to write a blog.

The odd thing is, when I was in the midst of all the panic a sort of cleft opened up in my mind between the known world and the unknown: metaphysical ideas and thoughts ran around crazily in my brain. What is the purpose of life? Why are we here? Is there a God, what is the purpose of prayer, how do you distinguish between good and evil, is there a justification for animal experimentation in medicine, should I welcome Fate with a warm smile and a hug or put on full armour and fight it with all my might, what is happiness…..you get the idea. But I couldn’t deal with any of these concepts, my brain was panicky and overfull.

I realised I hadn’t seriously contemplated any of these things for decades. Been too busy. What I needed was a time when I was running around less, when I could actually give my attention to questions like these. Now, at last, I have such a time. My brain has recovered from its post-operative and post-RT fuzziness, but my body is lethargic and weary so I’m not back at work yet. I have oodles of free time. No imminent threats. I have all the leisure I could wish for.

Ironically though, the cleft seems to have healed over: without the stress hormones flooding my brain, my ability to even contemplate these big questions seems to have vanished under a layer of much more prosaic thoughts like: what is the point of democracy when all parties sign up to the same agenda once elected, and: what shall we have for tea? Without the Grim Reaper lurking nearby at the margins of my vision, it seems my ability (or desire) to focus on the big questions has faded away. Is this because I’m shallow, or because I’m human?

But of course, death hasn’t really gone away. He’s just stepped back a pace or two out of sight. He is waiting. My number will be up, today or tomorrow or thirty years from now. If there’s things I need to think, or do, or contemplate, I’d better get started.

I plan to keep the blog going, with updates as and when I have check-ups and scans and so forth, but I really hope there will be nothing else of note to report. However there are other projects I have in mind which I might publish here from time to time, once I am back to full health.

In the meantime, Merry Christmas to you all, and I wish you a happy and healthy 2013!

War and Peace

I've been musing a bit about life and death, luck and fate.

I'm so lucky to have lived my whole life so far in a time of peace. All the warfare I have seen has been remote, over there, on foreign soil. During my lifetime, these fifty years or so of extended calm, medicine and surgery and the organisation of healthcare have advanced to the point where my tumour could be removed and my life saved, with relative ease.

And I'm so lucky to live in a country where the miracles of modern medicine are accessible to people like me. Reading reams of papers about the management of cancer, I have had to remember that survival rates are affected by the place of treatment as well as the time. For example, many USA studies have poor prognoses because individuals' health insurance don't cover the surgery.

By chance I happened across a Radio 4 programme the other day, "Return to Oasis" http://www.bbc.co.uk/programmes/b01nkt28 about poems from WWII. As we approach Armistice Day it seemed appropriate to share a couple of the poems. I'd give my eye's teeth to be able to write half as feelingly or eloquently. I've transcribed them from the radio broadcast, and any wrong emphasis or phrasing due to punctuation is down to me.

The first is by Wing Commander Dennis McHarrie. I'm intrigued by the line "He fought because he had to fight". Does he mean because of conscription, or morally? But mostly I thought the bitterness, the anger against the sentimentality of non-combatants, rang true. I imagine the Wing Commander saw many good men die.

The second is by Sidney Keys, who died in Tunisia in 1943 shortly before his 21st birthday. He was already a published and respected poet. His imagery is eloquent and brutal, and he had no illusions about the costs of warfare. Had he have lived, he would been around 90 now. The same age as my mum.

Luck

I suppose they’ll say his last thoughts were of simple things
Of April back at home, and a late sun on his wings.
Or that he murmured someone's name
As earth reclaimed him, sheathed in flame.
Oh God. Let’s have no more of empty words.
Lip service, ornamenting death.
The worms don’t spare the hero nor can children feed
Upon resounding praises of his deed.
“He died who loved to live” they’ll say
“Unselfishly, so we might have today”
Like Hell. He fought because he had to fight.
He died, that’s all. It was his unlucky night.

Wing Commander Dennis McHarrie
(originally untitled, the poem commemorates a friend of the poet who took up a defective plane and crashed, a plane the Wg Cdr McHarrie could well have flown himself. )


War Poet

I am the man who looked for peace and found
My own eyes barbed.
I am the man who groped for words and found
An arrow in my hand.
I am the builder whose firm walls surround
A slipping land.
When I grow sick or mad
Mock me not nor chain me:
When I reach for the wind
Cast me not down:
Though my face is a burnt book
And a wasted town.

Sidney Keys

I'm fed up

I'm fed up.

I'm fed up with feeling drained.

I'm fed up with thinking "I feel a bit better today" only to find myself out of breath with the effort of having a shower.

I'm fed up with wanting a rest after making a cup of tea.

I'm fed up with needing a nap most days.

I'm fed up with not being able to make any plans.

I'm fed up with not knowing how long this is going on for.

I'm fed up with having a tiny, annoying cough and not knowing whether to worry about it or not.

I'm fed up with finding out that by the time I've worked out what I want to do, I don't have the energy to do it.

I'm fed up with having my brain shut down halfway through ...whatever.

I'm fed up with feeling so pathetic about being fed up.

I'm fed up.

Hats Off to the Radiography Staff

The Radiotherapy has finished now, and although I'm tired, I'm otherwise unscathed. On the outside, at least. My skin has returned to its normal state, thank goodness, and so far there's no sign of radiation pneumonitis, which was a real fear for me a few weeks back.

The way RT works is that I'll carry on cooking on the inside for another 10 days or so, then gradually start to get better. Some of my tiredness it undoubtedly due to the travelling, and that will improve from here on in, but the bit that's due to the cellular damage caused by RT will continue to build. I have some tightness, or soreness,in my lungs and that might get worse, but so far I'm massively better than I thought I would be at this stage.

I wanted to describe what actually happens in an RT session, before I forget, and pay tribute to the staff who make what could be a technical, almost mechanistic process into a relatively pleasant and friendly series of events.

The RT room is laid out a bit like the sanctuary of some weird techno-church, with a wide open space for the radiographers (the Chosen Ones) to do their ritual tasks, an obsidian altar block, and a massive Shiny-White piece of kit which communes with the God of radioactivity. The sacrificial goat (me) lies on the block which floats up and along into the maw of the Shiny-White, just beneath a large horizontal circular disc about two feet in diameter. The disk is Shiny-White on the top but gunmetal inside glass from below. There's a square area in the centre with 2 combs of lead shielding inside, the teeth of which pull back to reveal The Shape.

Shiny White

The Shape is an extraordinary mystical construct created at the most rarefied levels of the Shiny-White priesthood. Aeons ago, High Planners and Planneresses would spend many days crouched over their sacred tomes and esoteric texts before consulting actual goat bones, but today the Planners apply computerised tomography to virtual goats. They have to ensure that the iso-dose curves created by the accumulation of Shapes is high enough to appease the Shiny-White without killing the goat. This takes many years of study.

The Shapes, once divined, are passed to the Chosen Ones. They in turn, ensure the correct Shapes are applied to the correct goat.

The Chosen Ones, in their blue robes, consult The Book (which looks to the goat like a white lever arch file). The Book rests on the goat's legs and contains sacred runes which must be decoded to ensure the goat's alignment will be pleasing to Shiny-White. As they study the sacred text the Chosen Ones begin their strange and haunting chants: "standard AML", "half a centimetre sup", "1.3 ant and inf" "I've got 91.6" whilst moving the goat into the correct position as dictated by Shiny-White. Occasionally a more junior acolyte (in virginal white) is inducted into the Mysteries, under the beneficient guidance of the Chosen Ones.

Once the goat is positioned to the satisfaction of the Chosen Ones, there are still further final ritual adjustments: 3.2 to the left and 11.6 towards Shiny-White.

Then the Chosen Ones retreat to the vestry. The goat is alone in the room. Shiny-White emits a low humming sound as the disc begins to rotate in a vertical plane about the altar. At some pre-determined point, the humming stops to be replaced by a whirr as a Shape is made in the lead shields. Then another noise: something between a buzz and a beep. This can be momentary, or can last several seconds. When it goes above 10 seconds an alarming clicking noise joins in with the buzz-beep sound. Then buzz/beep stops, and with a whirr the Shape is changed: another hum and Shiny-White moves to a new station, and another buzz-beep. For me, there were 4 angel rays (sorry, angled rays) each time.

Grumpy Old Goat

To the goat, nothing seems to have been achieved by all of this. Nevertheless, the Chosen Ones emerge from the vestry seeming delighted. "Well done" they'd say "you're doing really well" and although the goat is a grumpy old goat thinking, "actually, I haven't done anything at all except lie here" still, the goat is pleased. The altar floats back to its original position and the goat is freed.

Despite the ritual being performed correctly, still Shiny-White is not appeased. More goats must be brought forth, and more, and yet more.

Sometimes the ritual is prefaced by the Taking of the Pictures. "We're going to Take the Pictures today" one of the Chosen Ones will announce. This is allegedly a weekly process, but in practice occurs far more frequently, sometimes happening as often as 4 times in one week. Extra fittings emerge from Shiny-White: two small oblong ears and a huge white square, all of which join in a stately circumnavigation of the head of the goat. Usually, that's it. No change to the aural landscape, just the normal hum. No flashes or lights or strobe effects - frankly, it's all a bit dull. But just once in a while the Taking of the Pictures results in rearranging the goat into a position marginally more pleasing to Shiny-White.

The Vestry

The Chosen Ones spend all day, every day, trying to appease Shiny-White by arranging goats on slabs. It's tough work. Shiny-White requires a constant supply of goats, meaning there are no gaps. So any rearranging of goats, or technical problems, delays, administrative foul ups, late goats, or fools asking dumb questions as I was prone to do, results in prolonging the session so that the ritual continues for an hour or more beyond the scheduled running time.

Despite this the radiographers have been a remarkable pleasant and engaging bunch. Always friendly and supportive, never apparently rushed, and seemingly happy to answer my damn fool questions even though these were prolonging the daily grind. They have clearly found their true calling. I take my hat off to them.

Memories of British Rail

Thursday. Less than a week to go. Seems like a long, long time.

British Rail Sandwich

I feel like an old fashioned British Rail sandwich. Curling up on myself. I wake up in the night and find I've gone into a tight foetal ball. When I force my legs to stretch out, my knees and ankles click, and I think that I've been locked into that protective position for far too long.

I know I should be thinking up and out and tall and elegant, like the AT teacher I am, but I don't have the energy. I'm scrunched, and round, and small and tired. My feet drag when I walk, and I measure my passage across Liverpool St Station by tiny little landmarks. Just get to the ticket barrier. Just get to the information booth. Not far to the steps. Now to the tube entrance. Just up these stairs. Now down. Find somewhere to lean. Wait for the tube.

I'm weary.

Sadly, not sleepy though. At night, when I try and uncurl myself in bed (I lie on my stomach to flatten myself out, as if I were a piece of carpet that's been rolled up too long) my thoughts start rattling around inside my head like ballbearings in a pinball machine: never going anywhere new and never resting anywhere long enough for me to make sense of them.

Years ago when I was young and stupid we lived in Clapton. I commuted through Liverpool St Station every day. In those days station managers used to play marching music during the morning rush hour (like "The British Grenadiers" or "Colonel Bogey" or "God Bless the Prince of Wales") and the game was to try to not walk in time with the music.

Liverpool Street Station

But the best bit about Liverpool Street in those days was the holes in the roof. Such fun! You got to know where they were along the platform. On a showery day, you could stand confidently beside a roof hole knowing that some newbee would stand next to you thinking you knew where the carriage doors would be: then when the rain came pouring through the hole the newbee would get all wet! Tee Hee! Or better yet, stand right under them on cold winter evenings and the soft, beautiful, gentle snow would fall on you and you alone: it felt like being kissed by angels.

The roof has all been fixed now, and I'll be fixed soon.

In Trouble Again

It's Friday. I've calmed down somewhat from the stress of earlier in the week, and I'm getting used to the routine. I turn up, wait in the big waiting room, then the radiographer (who always introduce themselves, first name terms, which is nice: Kathryn or Pira or Claire or Colin or...) take me through to the little waiting area. Then it's through the double doors, round the bendy corridor to the RT machine. Kit off, on couch, some realingment of me on the couch then ZAP!!

But on Friday I went through the bendy corridor to the RT machine and saw two people I'd never met before (a man and a young woman) standing in a corner. She was doing stuff, while he watched. I waited.

After a moment, the radiographer said, "Are you all right Carol?"

I replied, "I'm sorry, I just don't like getting undressed in front of people who haven't introduced themselves."

I got sent to the naughty room.

Of course I didn't. The radiographer introduced them immediately, I got my kit off... all continued as normal.

But it was interesting to note that the 2 newbies were a student radiographer and her male trainer. What? Courtesy and respect weren't part of that module?

Monday Morning Blues

It's Monday morning again. Radiotherapy (RT) starts today (again). I’m anxious, of course, again.

Actually, it's not so much 'again' as still. I thought that after last weeks' fiasco I'd calm down, have a relaxing week off, enjoy the sunshine, and just chill. It didn't work like that.

Instead I've spent the entire week churning with anxiety. I've felt angry, and stressed, and victimised. I hate feeling victimised.  The trouble is, I'm completely in the hands of the medics. I try and understand what's happening, but I can't really know, not deeply. We're into the realms now of cellular activity, and biochemistry.What do I know about such stuff?  I got biology 'O' level, 40 years ago, but failed chemistry. Twice. I'm not qualified.

I rang UCH on Friday to check that all was well and they were expecting me - I'd had nothing in writing and after last weeks fuck up I wasn't going to trust in a beneficent universe. The chap on reception said yes, all was well, "if there was a problem someone would call you" "They didn't call me last week....."

Then later, we had a call from one of the radiographers asking if we could move Monday's appointment because Dr Carnell, the oncologist, wanted to see me. We weren't expecting to see any oncologists, just RT staff. I got the impression during the phone call that Dr Carnell wanted to explain what happened last week,why the planning was taking so much longer than expected. By Friday evening, my poor old frazzled brain was running out of control, speculating all kinds of nasty stuff. Have they found something new? Looking in detail at the planning CT scan, is there something else wrong? Do they want to do chemo, now, as well? Has the cancer spread?

At the end of the day I have to trust whatever I'm told, But because it wasn't clear at the start what was wrong, over the last 4 or 5 months I've seen many different doctors, and they've all told me different things.Sometimes contradictory things. They all have a different approach, which I do understand, but still. It's just little old me turning up at all these appointments, and whatever is going on inside doesn't change, but the words,and the approach,and the potential impact on my life, does change. It's all very unsettling.

Toppesfield Footpath

We tried to make the most of the good weather this week by going out for a walk in the lovely Essex countryside. Ended up waist deep in nettles. The footpaths where we were clearly hadn't been used in years. We got scratched, and stung, and bitten, and hot and sweaty ; and the lovely village pub with a sign outside saying "Open All Day!" was shut. Bugger.

A Gear Change

The process of cancer management can be mystifying.You put your trust in the doctor, of course. But each doctor we see seems to have a completely different understanding of what's going on than the last. As we never see any of them more than twice, we're left feeling a bit confused and uncertain.

Just over a month ago, the surgeon Mr Lawrence gave us the breezy "you're doing fine, see you in 3 months" speech, before mentioning almost in passing that he would have a chat with the oncologist about my future management. He seemed confident that the surgery had sorted me out for the time being, despite knowing that there were probably tumour cells remaining on my side of the incision site. We went home feeling reasonably happy. We felt that all was well, at least for the next few months. When we got an appointment for another CT scan through the post we just noted it in the diary and carried on with the process of recovery from the operation. Then we got a phone call. The CT scan needed to be brought forward, before the oncology appointment.

"What oncology appointment?" "The one with Dr Carnell, on 6th August, on her first day back from holiday." Oh shit. Suddenly the future looked a bit more complicated.

So off we went, to meet Dr Carnell. Her opinion is, the tumour cells at the surgery site will re-grow into another tumour.There's no ifs and buts, they will definitely re-grow. This time the tumour won't be encapsulated. Meaning it will be invasive, and malignant. Also, there may be microscopic tumour cells inside my pleural cavity where the tumour was pushing against surrounding tissue. Also, there may be some seeding of tumour cells because of the biopsy. All of which means radiotherapy, urgently.

Type B2 Cortical Thymoma

The problem is, my age. I'm just too young and gorgeous (!) and full of life. Thymomas are slow growing, and it might take another 5 or 10 years to grow into something that affected me. If I was already 80, that maybe wouldn't matter. As it is though, I'm hoping to still be young and gorgeous and full of life for at least another 20 years and I don't want an invasive, malignant cancer eating into my spine or heart or lungs in the meantime. Who does?

So of course we've agreed to the radiotherapy. The trouble is, it's not a risk-free procedure. There'll be permanent scarring on my lung and heart tissue, which we hope won't affect my quality of life too much. In the short term, I'm going to have skin reddening and soreness, problems with swallowing, possibly nausea, and exhaustion to deal with. All of these will gradually get more acute, continuing to worsen after the therapy has finished. But I'll get better eventually, and after the treatment the odds of the cancer recurring will be reduced from 100% to around 10%. It's a no-brainer, really.

I'm not looking forward to the process, though. We've got the treatment planning meeting later this week, then a lung function test to establish a baseline, then an echocardiogram to likewise, all at UCH. Then starting on 3rd September, 5-and-a-half weeks of daily radiotherapy, 15 minutes a time, also at UCH.

In the meantime, I'm feeling better that I have done for ages. The tiredness I was feeling post-surgery seems to have gone. The pain had largely disappeared. For the next few weeks I can have some normal life! In  September when the treatments start, I'll still be feeling OK for a while. I've got a space to go back to work,and get out in the countryside (even if the walks are shorter than we'd like), and have some fun.

I feel like a  real whingeing ninny to mind that my window of good health is so small.

While I've been recovering from the surgery, I've been watching a lot of daytime TV. Recently, that's meant a lot of the Olympics. Although I'm no sports fan, I've been blown away by the courage, dexterity, strength, skill, and sheer doggedness of the athletes. They all seem so nice, as well. It amazes and astonishes me that someone can devote years of their life to jumping further or running faster than everyone else: I marvel at the glorious pointlessness of it all. But of course we all spend acres of time doing pointless things: at least the athletes know what their aim is.

Sir Chris Hoy 2012

The true heroism of the competitors has been brought home to me by Sir Chris Hoy describing his training regime. Two punishing session of weight training in the gym each week, three hours on the track every day, work in the lab building up lactic tolerance (and in so much pain after these sessions that he is writhing on the floor in the foetal position for 15 minutes afterwards, vomiting). Then there's the resistance training so that he can, for an instant, produce more torque than a Ferrari.  And the physio, the diet, the wind tunnel, the psychologists. The mind-numbing repetitiveness of practicising the same technical points for hours, day in, day out. Of course, it's not just him doing all of this, but the entire team. Including those who didn't even expect to gain medals.

If they can do that for years and years just to win races, I'm sure I can do 5 weeks of radiotherapy to kill off my uninvited guest!

Slowly Improving

The nature of slow improvement is that it's slow. Although the first few days were actually thrilling: the progress from being able to walk to the corner 50 yards from our front door, to walking half way along the side road, to walking to the next junction was tremendous to achieve, but perhaps less exciting to read about. Since then I have advanced to walking around the block and to the local shops and back. For the first 2 weeks post surgery these minor milestones were a delight to both of us. Equally, for the first fortnight my pain was reducing and my strength increasing, so that I could sleep, and cook (although dishing up was still a problem), and shower, and just do things around the house with ever increasing ease.

I've already been accused by an esteemed member of the legal profession of using this blog just to get my kit off for the internet community,  while pretending that it's in the interests of medical science. I'm not about to name names, but shame on you, Pete. Still, here I go again: my external wounds are healing really well and now look like this:

Healing on the outside

More recently the recovery process has slowed a little, which is to be expected. But it chafes at me. I realise just how competitive I am, how I'm judging myself by my achievements. It's very silly, very childish.

I've been getting more pain in the last few days, too. I'd been given codeine and paracetamol tablets, but had stopped taking the codeine because I can be quite an addictive personality, and I worried about using too many. The paracetamol alone isn't enough though, I haven't been sleeping well. At night, my shoulders, back, and neck ache, and it feels like the bones of my ribs are pressing against each other. I can't find a comfortable position in bed, and moving around without using my arms is hard work. I got on the internet, and it was very hard to find out anything about "normal" pain management post sternotomy, just loads of scary stuff about chronic pain. However I did manage to find some personal accounts by people saying how they were pain free a week or so after surgery, which then made me feel like a malingerer.

Today I saw my GP, who was very kind and supportive. He reminded me that although I was healing on the outside, it's going to take a lot longer for the bones to knit back together. He asked about the various pains I was getting and even supplied me with descriptive words - is it a burning pain, does it feel like the ends of the bones are grating on each other - yes! yes! He's given me a prescription for co-codamol and reassured me about addiction. Apparently what is happening is that my nerves are recovering from the surgery and that is causing more sensation and more pain. I need extra pain management, not less. It's all normal and OK.

Tile House Surgery

Interestingly the GP also implied that people who claim to be pain free a week after thoracic surgery have something wrong with them, psychologically. There seems to be some kind of phenomenon going around whereby people deny the reality of their pain because they are so desperate to recover from things like this: analogous I suppose to women who are frantic to get back into their pre-pregnancy shape within days of giving birth.

It's easy to dismiss this idea as relating to a few oddballs with issues about their own mortality. I wonder though whether it isn't something that goes a bit deeper. There's huge pressure on all of us now to be fitter, younger looking, healthier, slimmer, happier, wealthier, and just generally more Californian than ever before. We're all bombarded with messages about eating our 5 a day, not smoking, taking vitamin pills, drinking just enough alcohol but never ever too much, wearing safety helmets and high-viz jackets on bicycles, taking enough exercise but not over doing it, getting out into the country not for the simple joy of it but for the sake of our mental welfare: the nagging to be healthy never ends. Most of all, we must avoid danger like the plague. And as danger is everywhere, we must also be wary, and fearful, all the time.

As a result of all that scolding, is it any wonder that some of us silently criticise others for failing to achieve health perfection.You've only got yourself to blame, we think about people who fall off motor bikes, or put on weight, or get depressed, or hit the bottle, or get heart disease. If only you weren't so uptight/lazy/greedy/undisciplined/obsessed/fallible. Then it's only a tiny leap to, why should the state pay for him when.....

I wonder whether as a society we're on the cusp of a declaring illness to be a vice.

We are seeing the surgeon on Monday 9th July, hopefully then we will get some information about the tumour, what type it was and what stage, and whether there's a need for further treatment, chemo or radiotherapy.

Recovering

I've been back home for a week now, and am slowly recovering.

I think I was probably discharged too early. I've been in a bit of a daze since I got back, prone to bursting into tears at nothing at all and feeling not at all sure what was going on. I've been completely obsessing about the care I had in hospital one minute (of which more on another occasion) and then the next, just unable to think about it at all.

The King's Head

A fortnight before the operation, we met a man outside the pub opposite The Heart Hospital who'd had open heart surgery there. He was saying that he felt really odd after the surgery - his heart had actually, physically been touched by a stranger, and not in a good way, and it felt so wrong. He had been saved by the surgery, but also violated by it. I don't feel that way, but I do feel  that the experience was extraordinary and should change me forever. The fact that such an event can happen - on the physical plane, that my chest can be opened so wide that the muscles along my spine ache, and then closed again and I will probably be fine afterwards; and on the meta-physical, that my apparent healthy active life was actually a lie because  all the time I was harbouring a silent killer - these are big things to deal with.

My reactions so far are puny. I don't think I've really taken in the reality of the situation. I've been getting tearful for no reason, feeling an existential sense of loss, but haven't yet taken in the fragility of life and the importance of being true to my core self and the people I care about. I'm still focused on trivial, practical things.

I'm doing breathing exercises, to get back the full use of that pesky right lung which has been squashed for so long and we are trying to get me moving, to build up my stamina. The first time we went for a walk, I got about 70 yards before I had to turn back. Yesterday, we went over 500 yards and although I was breathless when we got back, I recovered quite quickly. So that's good.

We were worried for a couple of  days about the incision scar, it seemed unusually hot, red, itchy and raised, but didn't seem to get any worse and I didn't have a temperature, and now that's getting better too. The scar goes the whole length of my sternum, and there are 3 new belly button holes beneath my rib cage, where the drains came out. Look away now if you're of a nervous disposition:

5 days post surgery

On a practical level, it's very odd, what I can do and can't. (I wish I'd paid more attention to anatomy lessons at AT school, but I used to doze off all the time. More than once, I was still asleep in the corner when everyone else started going home.) Anyway, anything using my chest muscles is, of course, compromised. I can push, but I can't pull. Carrying mugs is easier than carrying plates. Simple things like washing my hands or opening a jar or getting off the sofa hurts just a bit.

On the other hand, I really thought a week after discharge I'd still be lying on the chaise longue with Godfrey feeding me peeled grapes. Instead, I'm pottering around the house and garden, and so long as I'm careful, I'm doing OK.

Shopping

I hate shopping. I know some people enjoy it, but being a wayward penguin and all, I can never find clothes I actually want to wear. I have rules.

Fashion

• Rule 1. Never buy clothes that look they've been made out of curtains. That's 30% of this seasons fabrics gone for starters.
• Rule 2. Never buy clothes that look like the designer is over compensating for not having a paint box when he was 6. Yes I know there's lots of colours out there, but you don't have to use all of them, on every garment. Another 30% gone.
• Rule 3. Never buy clothes that look like someone's vomited down the front. If you think that in the shop, the image will never leave you. That's all the playfully printed T-shirts in M&S eliminated at a stroke.
• Rule 4. Never buy clothes that button up in front. When you are top heavy, like I am, and when your weight fluctuates like mine does, you'll always worry that you're wobbly bits aren't quite as well hidden as you'd like. I have 'button-gap phobia'.

Which brings me to my current predicament.

I've never given much thought to post-surgery clothing. However it occurs to me that with a wound down my sternum, pulling clothes over my head won't be much fun. Fastening at the back will present challenges, too. So I need some new clothes, and have to break rule 4. Ye gods though, is it me or is it particularly bad this year? I don't really want to have to break all the rules, but I might have to.

If you see a bloated, odd-looking ageing ginger bint struggling slowly down your street, wearing a lime, orange and fuschia striped shirt with mauve collar and cuffs, say hello. That'll be me.

The Phoney War

"The Phoney War" relates to a period between September 1939 and Spring 1940 when Britain had declared war on Germany but, Atlantic convoy attacks aside, not a lot was going on. Germany had defeated Poland, and everyone expected a further attack somewhere in Western Europe, but nothing happened.

From the perspective of the ordinary citizen, this was a strange time. The evidence of war was plain to see:

Barrage balloons were deployed around sensitive sites to make German bombers fly higher, so that their payload would be dropped less accurately.
2 million men were called up.
Gas masks were distributed to the civilian population, and people were required to carry them everywhere they went.
The entrances to shops and civic buildings were protected by massive piles of sandbags.
Trenches were dug in Hyde Park.
I think, although I'm not sure, that London Zoo put down its poisonous snakes in case they escaped during a bombing raid.
Petrol, and then some foodstuffs, and then paper, was rationed.
Identity cards were introduced.

But still, there were no bombs falling, no battles being fought, no wounded soldiers and a huge sense of unreality began to infect the British public. For a time, the whole idea of being at war seemed, well, phoney. And then in April 1940, German troops invaded Norway and in May, invaded Belgium, France, Luxembourg and the Netherlands. Winston Churchill became Prime Minister, and the fight was on.

I feel like I'm going through some kind of phoney war, myself. The tumour has been spotted: the danger is imminent: the threat is real. But strangely, not present. I've had some time to get my ducks in a row, do my will and powers of attorney, and yesterday found the strength to tell those I care about what's going on. But this time has largely been one of waiting. Waiting for a diagnosis, and then and only then, battle can be joined. This strange interregnum feels unreal, and I still have fantasies that it's all a bad dream, and I'll wake up one day, tell my friends and family that it's all been a giant mistake, and we'll laugh.

But through all the scans and biopsy, not one of the professionals has been laughing. Monday should be diagnosis day, and then, let battle commence.

Lung Cancer Awareness Campaign

The Government's running a campaign about lung cancer at the moment. You can't open a paper without reading a story about some celebrity whose parent died from it.

Ricky Gervais: Be Clear on Cancer

I think that's a good thing, the sooner cancer is diagnosed, the better the chances. But I suspect there's a lot of undiagnosed cancer out there, and wonder where all the physicians, surgeons, oncologists, pathologists, nurses etc are going to come from to deal with the rush. Of course, I'm an old hand at being cynical and wonder whether all that will happen is the worried well will step forward, get an unnecessary chest X-ray and go away again, wheras it won't occur to people like me, who have a tumour but don't smoke and are asymptomatic, to get checked out.

The truly frail, the poor, old, smokers, will probably be too scared to come forward. There's a whole blog in there somewhere about how all the public health messages in the world get consumed by the people least likely to be affected. Preventable ill health won't be prevented until the powers-that-be have the wit to build their message into the plotlines of the soaps, rather than into some exhortation on the side of a bus. When you're down on your luck, when life is already tough, these campaigns can seem to be just more nagging. That's what I think, but what do I know.

I read a story in today's Telegraph by Cassandra Jardine* entitled Lung cancer: If only I'd seen my doctor sooner. It reminded me that when I was in Basildon A&E just a few weeks ago one of the doctors asked about my symptoms. and when he heard I'd had a sharp pain in my intercostal muscles a couple of weeks before, he'd said, "Why didn't you come and see us 2 weeks ago?" The answer is, all I had then was a pain. I thought I'd pulled a muscle. I wasn't remotely worried about lung cancer, or anything else serious for that matter. I was fit, had no breathing problems, never smoked or worked in an asbestos filled or even smoky or sawdusty environment. You can't worry about what you're not worried about - everyone's worry glands are full to overflowing already, with real worries.

Despite all this, I still think it's a good campaign. Will it be effective? I hope so, because the statistics on lung cancer survival are truly appalling. In truth though, I can't help but think that the campaign will only be effective if the publicity resources coincide with a massive increase in NHS resources, targeted in this specific area. Otherwise all we're going to get is the current poor sevices stretched even further, and many people who were dying in ignorance will now live in fear for a few months, before dying, anyway.

Campaign Letter from DoH Medical Director (PDF)

* 30/05/2012: I've just read in todays Telegraph (30/5/12) that Cassandra Jardine has died.
R.I.P Cassandra.

Abbotswick House of Prayer

Some nuns came into my life just recently. I was phoned up out of the blue by Sister Camilla from the House of Prayer because one of the other nuns had back ache, and she thought I might be able to help. Well, I'm an Alexander Technique teacher, and back ache is what I work with mostly, so the answer was yes. There were sundry practical difficulties in Sister Teresa coming to my teaching room for lessons, so in the end we decided I would go there and do a series of group sessions for the whole community. It turned out to be a very small community, just 3 nuns, but because some other women were staying there temporarily, seeking sanctuary or studying, there were 6 people plus me in the group. 

We had a great time, I was a bit nervous as I hadn't done group work for maybe 8 years but I enjoyed myself. I felt I was getting as much from these warm, intelligent and thoughtful women as I was giving, and so I offered to do some more work with them on a kind of charitable basis - we hadn't worked out the details. I did a couple of individual lessons and was planning to do another group session, with just the 3 nuns, when all this tumour malarky started. So, the lessons have stopped pro tem as I can't plan anything at the moment, and as I have said elsewhere, I'm really fatigued.

But, I’m wondering about the nuns. I’ve been puzzling about them from the off. Why me? Why now? OK, the rational answer is the Sr Teresa has back ache, she’s tall and spends a lot of time standing, kneeling and sitting in a badly designed office chair. Sr Camilla has come across the technique before, I’m the only player in town, so it obvious why me, why now. I can’t believe it’s that mechanistic though.

I used to be a god botherer when I was young, but I don’t think I really thought too deeply about the spiritual message. I was hooked by the political message of lets all just be friends and be kind to each other. Nothing wrong in that. I also loved the whole chanting, singing, rhythm of traditional CofE services. I have a brother who is into the happy clappy stuff, but I loved the slow, ancient pace of the old fashioned liturgy. It made me feel safe. But my feelings had everything to do with man-made majesty and mystery and nothing to do with heaven and hell, or the meaning of life.

When I stop and think, I don’t even know if I understand what spirituality actually means. A belief in something outside yourself? Trust in something bigger and better? A path to some vague sort of 'goodness'? I’m buggered if I know. Religion I understand, a worldview, a set of rules and a creed of some sort. I'm sorry but Catholicism has always seemed to me to be synonymous with bigotry: to embody the stupid, knee jerk, rules-based theology that brings us despots, wars, poverty, and ignorance which I think inevitably follows from blind obedience by the many to the few (or the one) who clearly, being human, will be flawed. But the nuns seem to be intelligent, thoughtful, humble, committed, and kind. They have clearly and willingly given their lives over to to serve their religion and their god. I don’t get it, and it nags at me.

Have they come into my life to lure me back to Christianity? Or to bring me some comfort because they will light a candle for me? Is it ordinary human kindness they offer or does it have a different dimension?
Maybe, just maybe, it's me who's the bigoted one. I've always been politically a soft hearted lefty, and one of many hideous aspects of the left is a tendency to condemn the reasonably good for its failure to be completely perfect. So, the left happily tears apart age old political institutions because although they work well, they're not inclusive. It lets small children rot in care homes because although there's good adoptive parents out there, they're the wrong size or colour or have imperfect views on, say, gay marriage. Maybe I'm falling into the same trap of judging the Catholic church by looking at its evident failings and closing my mind to the possibility of these being mitigated by the inherent goodness of the majority of the people involved.

It's very confusing. I don't want to be the kind of person who has a death bed conversion though - how weak willed is that? I need to think these things out and come to understand myself better. How on earth do I even start?

A Wayward Penguin

   
The penguin thing started way back in 1988 when Godfrey bought me a Jonette Jewelry penguin brooch with 8 penguins all looking off to the right and one looking the other way. "That's you" he said. And he was right. I've never been one to follow the crowd, I'm not comfortable in groups doing group things, I always want to go faster, or slower, or a different way entirely.

People who know me find me irritating. I don't go out of my way to be annoying, but being an awkward sod comes so naturally that half the time I don't even realise I'm doing it. It's not that I don't like people, or that I think I'm better than them, or am trying to create a distance. It's more that I see the world differently, through a lens of negativity maybe, and I constantly want everyone (especially me) to be better than they are.

I hate people who are glib, who do a half-assed job when with just a little more effort they could be brilliant. So I'm constantly angry with politicians who come out with completely stupid ideas then, when everyone points out how stupid the idea was, they drop it and pretend that that's democracy in action.

Maybe I am just too in touch with my vulnerability, and get scared when I can see that those in charge have no more idea where we are going than I do. I definitely get scared and angry when I sense a lack of compassion or humanity in people in power.

I think I grew up fiercely competitive, yet also with very low self esteem. I vacillate between wanting to be in charge of everything and boss everyone else around, and sulking along in the background thinking "It's not fair...". But woe betide anyone who finds me in mopey mode and tries to take charge: I'll flash back with furious anger and tear them apart, or  - and this can be much, much worse - agree with their plan and then do everything in my power to undermine it. 

I never said I was nice.

My favourite website at the moment is the webcams on South Georgia. They work on the basis of intermittent gratification (thank you Sam Banga, possibly the nicest man on the planet, for that phrase). You can check them out for days and days, and never see anything other than the incredible stark beauty of the place, but then one day, the beach is full of penguins, or seals, or sometimes humans, doing their thing: oblivious to me, looking in. It's the first thing I check out when I get on line, and usually the last as well.