Checkup, Jan 2015

My last checkup was in January and I'm still fine. Check-ups are every 6 months at the moment, and are always a bit nerve wracking, although I feel OK and have no health worries and expect all to be well.

It's weird - there was such a lot going on in 2012, and it all seemed cataclysmic. But now in 2015 life just bumbles on in its usual way, and for weeks or even months at a time I can almost forget the events and experiences we went through then. Occasionally I get a strange graunching feeling in my sternum, which having been sliced in two will never mend and is held together by wires. Otherwise, I get caught up in reality, the here and now, general stuff. Then the appointment comes up and BLAM! all my 2012 fears and worries are back in my head.

The check-ups are to allow the oncologist and a radiologist to look at X-ray images of the wire clips inserted at my surgical site (just to the left of my spine in the X-ray). So long as these images stay clear, so do I. If they start to become fuzzy, there's a problem. At one of my checkups I was told that although the radiotherapy I had was designed to kill off any remaining cancer cells, sometimes the re-growth is just knocked back rather than killed off. If this happens, the re-growth is knocked back for up to about 2 years. I finished my course of radiotherapy in November 2012, so am now past the 2 year threshold.  The images are clear, so far.

Carol's X-ray: the clips are clear

I say I can almost forget the events. But at the same time, there's often a kind of undercurrent of thought, almost at a sub-concious level, where I'm still trying to make some sense of it, find some meaning in it all. There's wise things to be thought here about chance and choices, destiny, fate and the porpoise of life. Cripes. When I've thunk them I'll let you know.


But for now, I'm well, and very glad to be alive. And spring is here!

Cultural Vignettes

It's Sunday 12th Jan and I have my next X-ray and check up tomorrow, so I'm thinking about the last 18 months or so and  taking stock. Re-reading this last post has been a bit of a shock. I don't know what came over me.

I was trying to make a point about how startling London can seem to a provincial woman like me: although I used to work in London that was a long time ago and things have changed a lot. People are pushy and rude, and the manners that oil the wheels of society seem to be disappearing fast. This makes life more confusing than it needs to be, genuine mistakes turn into arguments and conflict runs amok.

I think I must have come home feeling vulnerable and insecure, hence the bitterness that comes through.

Yet all the things I wrote about, actually happened; each one from the careless driver to the non-apologetic doctor was a real event and the accumulations of all of these events made me feel like I was the outsider. As we grow older, how do we learn to live in a world that is changing so rapidly? I remember when I was young, thinking my grandparents were so out of touch, so clearly of a different generation, I was embarrased for them, for their attitudes. Now I'm becoming the uncool old bat.



I had another check up yesterday, and I'm fine. I really am fine, now. Back to normal. Which is, quite frankly, wonderful. The x-ray was clear, and there's no sign of any re-growth around the clips marking the surgical site. Of course, if the thymoma was re-growing it would be too small to see at this stage anyway, but still.

The check ups do two things: they allow the oncology staff to keep an eye on me, and allow me to keep an eye of the wacky and wonderful world which is London.


This time, we saw:

- an orange-robed Hare Krishna monk on an old Moulton bicycle narrowly avoiding being run down by a car reversing into a rare parking space; the car was clearly in the wrong and yet the monk didn't seem at all angry (although the cyclist behind was gesticulating with intent). Somehow I doubt we'll be seeing the monk's near miss on You Tube any time soon - not all cyclists feel victimised by drivers;

 - a couple of women standing at the side of the road in full niqab and burka, just the eyes visible. One was dressed completely in black but the other: well, I guess she wasn't happy with her outfit when she looked in the mirror that morning because although the gown and the veil were black, the headcovering was a fetching shade of purple. They looked both lost and, to be honest, a bit ridiculous. Personally I'm not a fan of wearing any religious dress unless you've taken vows - anything else is just showing off. And I reserve the right to point and laugh (although I didn't, I'm too polite);

 - in the public gents at UCH, where Godfrey had gone to wash his hands, there was an African man standing in front of the hand basins with his trousers and pants round his ankles, blocking the way. He was washing his meat and two veg very thoroughly in the hand basin. This is a hospital: maybe he has groin problems, who knows. Had he been a British bloke he would at least have had the grace to look a bit shamefaced and apologetic and probably mumble some kind of explanation. Let's face it, a British bloke wouldn't have been doing it in public in the first place. He'd have gone into the stall for privacy, with a bunch of wet hand towels. But he wasn't, and he didn't;

 - a young Asian man in his early twenties talking to the volunteer in reception at the Macmillan Centre: the lad had apparently missed his hospital-organised transport home. He had no cash, and was thirsty.  The volunteer reached for a pot of pound coins and handed one over. The young man went to the canteen and bought himself a drink, then walked out of the hospital with it and wandered off down the street. I thought, who comes to a hospital appointment without any cash at all? There's no A&E here, it's all out patients. Why didn't he get a cup of water from the free water dispenser if he was thirsty? How come he had hospital transport organised when he appeared to walk as well as you or I? Who, if they have transport organised, misses it? Most people hang around for ages waiting for it to arrive. Is he even a patient? And, I also thought, this must happen on a regular basis for there to be a pot of coins at reception.

We had to wait 45 minutes for the appointment, which was odd because I was the first patient in the clinic: but the doctor did explain and apologise, so we didn't mind a bit.

Got you! Of course he didn't explain or apologise. He's The Doctor. I'm just the patient. It's my duty to sit and wait and wonder and worry, and not mind a bit.

Next appointment: 13th January 2014.

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?

Lisa Lynch RIP

Lisa Lynch, author, editor, blogger and cancer bitch, died a couple of days ago.

I never knew her. Never had a conversation and a giggle with her, or sent her an e-mail, or commented on her website, or had any contact at all. All I did was lurk in her blog, and read her posts avidly. Even then I was a Johnny-come-lately: I only started reading Alright Tit last spring, when for some unaccountable reason I went through a period of reading everything cancer-related I could find.

I love the blog. I love her vibrant, straight talking, tell-it-like-it-is style, and her extraordinary ability to relay the humour and absurdity of her situation even in the midst of utter horror. She describes situations so vividly that you're there, right there with her, through all the consultations and treatments, operations, chemo, pain, anxiety and hair loss - which she deals with in typically robust style by becoming a "wig-slag". You're with her through the good times with her much loved friends and family: shopping trips, birthday parties, holidays and Christmases and the birth of her nephew. And through the remission and then the re-occurence. With her all the way into the hospice.

Her blog wasn't about cancer: it was about life, with cancer.

I never knew her. But I'll miss her.

The Play Specialist

It's the middle of March and time for a post treatment clinical assessment. This will revolve around my signs and symptoms and a review of the post-treatment CT scan. Hopefully it will go along the lines of, "Everything looks OK, see you again in 6 months". The scan isn't expected to reveal anything - my thymoma was a slow growing one, and there's no reason to assume any son-of-thymoma would be different from the parent - but it might indicate the degree of any permanent scarring to my lungs and heart, and would provide a benchmark. A survey if you like, of how I am on the inside post-surgery, against which future images can be compared.

The scan took place last Monday. No big deal in itself but it was snowing, and bloody cold. I went to the cancer centre as advised, to find that the scanner there had a fault. Back out into the snow and over to the main UCH building, where because they were picking up the cancer centre patients there were inevitable delays. The staff were as always good natured and professional, despite knowing they were in for a tough day.

I waited a short while before being called, changing into one of those fetching wrap-around gowns and getting cannulated. Then the wait began in earnest. I sat in a side cubicle with the door slightly open for air, watching the world go by, for a fascinating 90 minutes. So many people walking up and down that Imaging Dept. corridor. I tried to guess the significance of the different uniforms:

Dark blue scrubs: radiographer
Light blue scrubs: radiographer, different grade?
Grey scrubs: wandered in from another local department, perhaps?
Aquamarine scrubs: no idea
White tunic and slacks: physiotherapist
White tunic with maroon piping and slacks: radiography helper
Blue tunic and slacks: nurse
Shirt and trousers: admin
Shirt and trousers and stethoscope: doctor

It went on and on. White coat: pharmacy, grey coat: porter, black T-shirt and trousers: maintenance man.....in the end I gave up. Until I saw my bete noire. My personal WTF? of NHS staff - The Play Specialist.

Imagine the scanario. 5-year-old Tarquin bangs his head. Mummy brings him to hospital. He's OK, just a tiny bit of blood from a cut which needs a stitch: but has an X-ray just to be sure. The A&E nurse says, "Follow me, let's go and see the nice man and take a picture of your head." Tarquin, Mummy and the nurse walk briskly to Imaging, get a quick X-ray and go off home.

But WAIT! UCH has a large team of play specialists, and this is an intervention involving a child. Call the Play Specialist! Little Tarquin, Mummy and the nurse wait in A&E, blocking a valuable cubicle, until a play specialist can be summoned. She arrives with armfuls of books and age-appropriate toys, then spends 20 minutes telling Little Tarquin what the nurse and his mother have already told him, that he needs an X-ray and it won't hurt a bit. Instead of a brisk walk to Imaging there is now a slow, snails-pace trail with the Play Specialist desperately explaining things to Little Tarquin, walking backwards and contorting her body so that her head is at waist height and she's tripping over her own cardigan in order to maintain eye contact with the child, dropping books, getting crayons tangled in her ID lanyard and bashing her arse into unwary and often unstable elderly patients along the way. Then she inserts herself in between the radiographer, mother and child to re-explain all the things Little Tarquin has already been told, before congratulating everyone on how brave they've been and then pointlessly accompanying the entire group all the way back to A&E.

On the first run past my cubicle, she was sounding a bit tense (not suprising given her posture) which is why she attracted my attention. She said "So, as I said before, there's nothing to worry about at all". Then her tissue fell out of her pocket and she had to put all her books and toys down on the floor to retreive it. Little Tarquin didn't look worried: he was gazing about him with interest. Mum didn't look worried. The nurse looked bored. On the way back, I hear her before I saw her, saying in a tight and high voice "Oh what a clever boy, you can jump!" If he'd been me, I'd have said, "Of course I can sodding well jump you dozy cow, I'm five years old! How do you think I hurt my head in the first place?"

But I'm 56 and don't qualify for a play specialist. Which is probably for the best, all things considered.

We see Dr Cornell next Monday, and hope she's going to say all is well. Although I do have alopecia, which is annoying.

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.

Half Way There Day

I'm half way there! Oh joy.

This blog is all about my skin care during RT.

I'm a ginger, so also fair skinned, meaning liable to burn easily. So when the RT Planning session took place and I was warned about the possibility of radiation burns, I took the advice I was given seriously.

I was told to use aqueous cream in place of soap, and as a barrier cream and moisturiser, starting a few days before the treatment and carrying on until a few weeks post treatment. So that's what I did. I hate the stuff, don't feel clean and don't actually think it's a very good moisturiser. Still, at least it doesn't have any nasty chemicals or perfumes which will irritate my skin.

Radiation-induced Eczema: 26/9/2012

Two weeks into treatment and I start to get red, itchy patches on my boobs (where the radiation beams go in) and on my back, diagonally opposite (where the radiation beams come out again). The radiologists think it's probably the first signs of burning. Their advice is, store the aqueous cream in the fridge so it's more cooling, and use it more often. Which I do.

At my next weekly meeting with the oncologists - Dr Carnell herself doesn't come to these, I'm under the TLC of her registrar, Dr Ball (which suits me fine) - I show & tell. The redness has spread to new areas, but not got redder: it's itchy when I use the cream, and it's popped up in one or two places that aren't being irradiated.

The pattern no longer fits in neatly with the radiation beams. Also, the marks aren't getting more intense but instead are spreading out. I think it's eczema. Radiation induced, maybe. Stress related, certainly. I tell Dr Ball what I think.

Dr Ball thinks it's radiation burns. He does however take seriously my comments that the aqueous cream makes my skin itch, and prescribes Diprobase which some patients tolerate better. I try it. It still stings, but less so than the aqueous cream, and still doesn't moisturise very well.

Over the weekend I begin to wonder, why is aqueous cream pushed so strongly when the doctors are clearly aware that some patients can't tolerate it? What is the aqueous cream for, exactly? Would any skin cream do, so long as it's non-irritant? So I start googling.

Many US hospitals do not recommend using aqueous cream during RT, but most UK hospitals seem to think it's good and recommend it for all patients. But however hard I look, I can't find any specific reason to use this particular formulation of skin cream: the criteria seems to be simply about keeping the skin flexible and moist and avoiding irritation.

I'm not a normal patient, I don't have normal skin. 30 years of eczema, and 30 years of all kinds of skin cream, have left me with a sensitive skin. I used aqueous cream briefly and on medical advice back in the 1980's:  it stung then and it stings now.
 

Spreading ??? -induced eczema? : 01/10/2012

More googling, and lo and behold, according to a study by Tsang & Guy published in the British Journal of Dermatology, "the application of Aqueous Cream BP, containing ∼1% SLS, reduced the SC thickness of healthy skin and increased its permeability to water loss. These observations call into question the continued use of this emollient on the already compromised barrier of eczematous skin."
Effect of Aqueous Cream BP on human stratum corneum: abstract

SC, the stratum corneum, is the surface layer of the skin. It consists of dead cells (corneocytes) that lack nuclei and organelles. The purpose of the stratum corneum is to form a barrier to protect underlying tissue from infection, dehydration, chemicals and mechanical stress.

Thinning this layer during RT seems like a seriously bad idea, to me.

Aqueous cream also increases the rate of trans epidural water loss. Not a good idea when one of the criteria for using a moisturiser is to .....the clue is right there in the name.

So now I've stopped using the stuff. I'm putting hydrocortisone cream on the eczema patches and using my normal Dove soap and moisturiser, and the itching has gone away and the redness is starting to recede. As a result I'm more comfortable and relaxed, sleeping better and having fewer nightmares.

When I told the radiography staff I'd stopped the aqueous cream, I got met with concerned frowns. "We recommend that for all our patients" I was told."Yes I know" I replied, "and so do most NHS hospitals. Nevertheless, my skin can't tolerate it, so I'm stopping using it." "You'll have to see the nurse, and show her the cream you're using instead. It's important that it doesn't contain any metals."

So I did, and she was fine about it (although she did suggest going to the Dove Sensitive range rather than the normal stuff). She said, " A lot of our patients can't tolerate the aqueous cream, I don't know why..." I showed her the Tsang and Guy research and she seemed interested. Hopefully, she'll take notice and reconsider the departmental policy to at least tell patients that there are other options.

There's a lovely little research project in there somewhere, for some enterprising nurse or radiographer wanting to make life easier for those of us with sensitive skin.

Postscript: Wednesday 17th October 2012

The skin erythema has largely subsided even though this is at the end of my 5½ weeks of radiotherapy. The skin reaction was not solely down to radiation but due to the effects of the aqueous cream dehydrating and thinning my skin, making it more vulnerable to the radiation.
As soon as I stopped using it, the inflammation started to subside.

17/10/2012: Skin improving after stopping recommended aqueous cream

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?

Trust Me I'm a Doctor: Part 1

I was stressed going in Monday morning, 10th September.  Partly because I was on my way to my first radiotherapy session, again: scary. Also because the appointment time had been changed as “Dr Carnell would like a word first”. No-one likes to hear the phrase “The doctor would like to see you” – it’s inherently scary, too. Still, Godfrey and I reasoned that she probably just wanted to apologise after the balls up last week. Dr Carnell’s Registrar Dr Khan plain forgot to let us know the first treatment  the previous Monday had been cancelled, and so we wasted a fraught trip to London to face the unknowns of radiotherapy for nothing.

An apology? What were we thinking? Dr Carnell explained the reason she wanted to see me was that the proposed treatment had been changed.  The only thing she said, to acknowledge the grief we'd been put through, was “I gather you were messed around last week, but I wasn’t here” Hmmm. I always thought that the buck stopped with the Head of the Clinical Firm, and ultimately the actions of any of the staff in the firm lay with the Consultant in charge regardless of whether they were in the vicinity.

When Godfrey and I first met Dr Carnell, around 6 weeks post-surgery, she  said I needed to have the perimeter of my right lung bathed in radiation using IMRT “which is ideal for this kind of situation”. She described in glowing terms (oh yes, pun definitely intended!) the benefits of IMRT over the conventional, conformal radiation and explained how rogue cancer cells could be lurking anywhere where the tumour had touched my lung or chest wall. That’s a big area: from my collar bone down to the base of my ribs, then sweeping out to the right.

She explained that side effects with IMRT are in general, less severe than for conformal radiation. The radiation is beamed at the target areas from thousands of different directions which means they are able to more effectively avoid healthy tissue and vital organs.  The process was well suited to treating concave surface areas such as the interior of the chest wall, and also where there is constant movement.  When I went in for the planning meeting a week or so later, one of the things they did was study my breathing pattern. It all made sense.

Moving on to Monday, at the quick meeting squeezed in immediately before the first treatment, and Dr Carnell explains the real reason for the delay in starting my treatment. In planning the IMRT the physicists had realised that there was a significant risk of something called ‘radiation pneumonitis’ (RP). This is basically an inflammatory process in the lungs which in the worst cases can lead to scarring and fibrosis in both lungs, with people ending up as a “respiratory cripple”.  So instead, my treatment plan had been revised, meaning the planning had to be re-done using conformal radiation: “back to the old-fashioned way.  Any questions?”

“Errr, what is a respiratory cripple? Sounds like something to be avoided”. “Yes” chipped in the RT department nurse, also in the room and up until then, silent. “I’ve seen it, it’s not something you want to have.”
“Which is why we want to change the plan” explained Dr Carnell, pushing the amended consent form towards me.
 “Do you want me to re-sign that?” I asked
 “Doesn’t really matter, I’m a witness” said the nurse, sitting on the treatment couch, observing.
 I was feeling confused, Godfrey sensed an information vacuum.
“What about the side effects? “  he asked.
”About the same” replied Dr Carnell.
“What about the scarring on the heart?”
“About the same.”
“What about the lungs?”
“About the same.”  

Getting information out of this woman was like getting blood out of a stone.

“What about Carol’s oesophagus?”
 “The side effects on the oesophagus might be a bit worse, you might need to avoid firm food for a while.”

“Will it recover?”
 “Oh yes, after a few weeks.”
The nurse chipped in, “In any case, we can treat that. We can give you things to ease the symptoms”.

Godfrey was still puzzled at the change in the modality. Dr Carnell said they'd tried several times with the IMRT approach, but nothing was safe. Conformal radiation seemed to be the best bet. "The optimal solution?" he asked. "Yes."

So I signed, and we waited for the first treatment. As we waited, we tried to take in the salient points of the lightning quick consultation. Godfrey was saying, there’s something wrong, this doesn’t sit right. He sensed a lot of defensiveness. It wasn’t so much what was being said, as what wasn’t being said.  Afterwards, he began to get more and more concerned. “This doesn't make sense” he was saying “Why did we get all this spiel about how IMRT was so much better, only for Dr Cornell to tell us now, at the last possible moment, that you’re going to have the old fashioned treatment?  How can it be that IMRT’s ideal for treating you one day, and now it could virtually kill you? The medical staff must have known this was the intention when they cancelled last weeks’ appointment, why didn’t they say anything earlier? Why bounce us like that? How come Dr Carnell doesn’t take responsibility for not letting us know about the delay in treatment? So what that she wasn’t here, isn’t she responsible for her staff?”

By the time we got home, Godfrey was bouncing off the ceiling with worry and fury. We looked up RP, and ye gods, it definitely is something to be avoided. In essence, your lungs become leathery and fibrotic and can no longer do the oxygen exchange thing. You can reach a point where you can’t breathe at all, and die. It’s irreversible. A small section of lung can be affected initially, then it can spread through that lung and even into the other side. If you don’t die, you’re on oxygen, gasping for breath, unable to walk more than a few yards.

There are 5 grades of RP:
1) Mild dry cough not requiring treatment
2) Cough requiring narcotic cough medicine or breathing difficulties during activity
3) Severe cough not responsive to narcotics and breathing difficulties when resting, intermittent oxygen or steroids may be required
4) Continuous oxygen or assisted ventilation
5) Fatal

I don't want to be unfair to anyone in this blog, but I do want to be true to my emotional state."State" being the operative word. The more we looked into RP, the worse it got. Some of what follows is, with hindsight, a bit blamey, a but harsh. But that is how I was feeling.

Recent thoracic oncology papers state that 5 - 15% of people treated with RT to the chest area get RP: that’s including lung, breast, oesophageal cancer etc. Not all of them get it severely: sometimes it’s just mild breathlessness or a cough, and sometimes when it’s mild it goes away again. The danger of  getting severe RP (Grade 2 or higher) might be an acceptable risk when you have something terminal. But I don’t. Not at the moment, now the thymoma’s been removed. All I have is a few slow growing cells at the end of a minor blood vessel.

RP is caused by the RT: your chances of getting it vary with the total dose, the volume of lung treated, the fraction size and whether or not you receive chemo at the same time. The critical dosage is 45 Gy: I’m to have 50.4. Over a wide area. And, it’s caused just as much by conformal radiation as IMRT.

We’d been worried about the seemingly extensive nature of the IMRT: I get in principle how it would work for a solid tumour, but couldn’t see how it could be used to treat the ‘rind’ as they call it, where the lungs lie against the chest wall, without doing damage to a load of lung tissue. I’d put my worries down to not understanding fully. Now though, it seems I was right: how come I instinctively knew that, but Dr Carnell, with all her qualifications and experience, didn’t?

We began to play back our previous meeting in our minds, and realised that we didn’t really like what we remembered. When I’d asked questions on our first meeting in the Macmillan Centre on the 6th August, she’d said “it’s all very complicated, you need to have studied oncology for 6 or 7 years to understand this stuff.”  I was somewhat taken aback by her seemingly paternalistic and patronising tone. She also pulled me up when I mispronounced a technical word, like I was some hapless medical student. Today, she’d seemed less than open when answering Godfrey’s questions, and not really explained the reasons behind the change in treatment modality. We couldn't understand how the side effects I was now facing from conformal radiation would be "about the same" as before, since one of  the benefits of IMRT was said to be less severe side effects. Dr Carnell hadn’t felt the need to apologise for the anxiety and stress caused by her staff not telling us of the changed start date. She’d seen us alone the first time, this time she’d organised a witness.

There's a feeling you get sometimes, when someone's giving you unexpected news.It's hard to put your finger on: but there's a sense that words are being used in a very particular way, and meanings are shifting. You run the script back through your mind,and everything seems to be correct, yet the sense is you're in trouble. There was something of that going on in the meeting today, a sense of manipulation; a lack of a true connection.

The only outright euphemism I spotted during the meeting was the nurse saying, "we can treat that", for oesophagitis. Yeah,right. So can a crystal healer, or a reflexologist. The question isn't whether it can be treated, but whether it can be cured. But, as Quentin Crisp said, "Euphemisms are not, as many young people think, useless verbiage for that which can and should be said bluntly; they are like secret agents on a delicate mission, they must airily pass by a stinking mess with barely so much as a nod of the head. Euphemisms are unpleasant truths wearing diplomatic cologne."


The fact that I was looking for euphemisms, for things unsaid, for half truths, for unexplored areas, says it all. I was panicking, and confused, and I had lost faith in my doctor.


STOP! I want to withdraw my consent to RT, altogether. I’ll take the risk of the tumour re-growing, thank you very much.

Trust Me I’m a Doctor: Part 2

By Tuesday morning, after a sleepless night, I’d decided. Unless I got some answers, I was going to pull out of the radiotherapy.

I rang the hospital and asked for an urgent appointment with Dr Carnell, to try and get those answers. She agreed to see me at 1 pm, before my scheduled 2nd treatment at 1.30.

Because of my NHS experience, I’ve met loads of doctors over the years. Most of the doctors I’ve met have been extremely bright and totally committed to doing the best for their patients. Many have been funny, warm, and thoughtful as well. Many are also big-headed: but personally, I accept that as part of the package. You need a certain amount of self-belief if you’re going to cut people open or prescribe poisons for a living.

Being bright, committed and even a bit egotistical doesn’t make them infallible. Every week in the press there’s stories about clinical mistakes. Of course, I do understand that the reason these stories make good copy is that mistakes are relatively rare. I also understand that in RT more than almost anywhere else there’s controls: double checking of plans, calibration of machines, routine monitoring of dosages, regular scans: all possible steps are taken to eliminate error.

I've absolutely no doubt about the skills, knowledge and experience of Dr Carnell. Still though, at heart the decision to treat or not to treat, to handle things this way as opposed to that way, these are all judgements. I want to be included in those judgements. No-one (except Godfrey) has my interests at heart as much as I do. The chances are that I’ll agree with whatever decisions are being made, but I want to be part of the decision up front. I don’t want to wait till afterwards and then complain.

The thing is, I've thought a lot about life, and death, and that grey area in between. I spent a year working as a care assistant for severely physically disabled people. I'm talking about people who, in the main, were fully aware, had normal cognitive ability but no motor control. Think 'locked in syndrome'. Most couldn't speak, couldn't move their arms or legs, and were doubly incontinent. Most couldn't swallow so couldn't eat. Some had degenerative conditions and would die young, some had a normal lifespan. They were there because of MS, or strokes, or an anaesthetic accident, or head injury. I'd rather die than live like that.

So when it comes to clinical outcomes, I'm not interested in pure survival rates. I'm interested in quality of life. I would rather live well for the next 10 years then die prematurely of cancer, than live out a normal lifespan with severely compromised breathing..

I can understand doctor-speak, at least a little. I’m used to being treated by doctors as a colleague, and can’t and won’t accept being treated as a know-nothing patient. Doctors however, are not used to treating patients as colleagues. So Dr Carnell and I might have a communication problem. I’m sure it will be resolved, but there’ll be some difficult moments in the meantime.

I sensed that Dr Carnell and I could be heading for one of those difficult moments.

Godfrey and I had decided that we wanted 4 other options to at least be discussed:

• Watch and wait. 
• Treat just the pedicle: the surgical margin - where we know there are cancer cells. 
• Treat the pedicle and the area immediately adjacent, and maybe the biopsy site. 
• Seek a second opinion. 

 It all sounds so reasonable, in writing, but on the journey in, I was a mess.

Was I being a fool, everyone else in the world would just shut up and take what was on offer, what did I know, who am I to question a consultant, did I know how lucky I was to even be able to access treatment, supposing I do refuse treatment and it comes back: I’ll kick myself ………………..and

Not inspirational

I’d rather live well and die young than risk being a respiratory cripple, why hadn’t Dr Carnell known at the start what the potential problem was, how come the physicists had to tell her, UCH has a reputation for treating aggressively which is good when you have a carcinoma but maybe doesn’t apply to me, conformal radiation is going to harm me just as much as IMRT maybe more, maybe………… and....


I can’t cope with this, I’m going to make a fool of myself, I haven’t had to strut my managerial stuff in years and don’t know if I can still hack it, I’m panicking, I’m going to cry.


When I got there, Dr Carnell was in a clinic room with another of her registrars, Dr Ball. “Need another witness, do you?” I thought.

I started off by explaining that I knew UCH, and the Oncology department, was on top of its game. That the excellent results they produced were a direct consequence of the aggressive approach they took to cancer, and that it was precisely for that reason I had wanted to be treated there. Then I said “You seem to be treating my tumour as aggressively as if it were lung cancer. If it had been lung cancer, then the risk of side effects such as Radiation Pneumonitis (RP) might be worth it. But it’s not. I had a slow growing, semi-malignant thymoma, which has been excised. Why can’t we just keep an eye on me, and if the tumour comes back, excise it again?”

Dr Carnell explained that it was precisely because the tumour was slow-growing that it needed to be treated so soon, and so aggressively. Where the residual cells are, right up against major blood vessels and my heart, would make future surgery very problematic. The best option is preventative. RT works best on fast growing cells: thymomas do not respond well to RT. Waiting for it to grow and then zapping it would not be straightforward. “The time to treat it is now, when there’s only a few cells involved.”

“But the standard treatment for Thymoma is excision, not excision plus adjuvant RT.”

“Yes, but yours could not be completely excised, there are still cells at the margin. And because you are so young, it will re-grow enough to cause problems later in life.”

I knew about the incomplete excision and regrowth, of course. Hadn’t realised about the complexities of future surgery.  So it looked like ‘watch and wait’ was not as simple as it sounded. But still, the innocently named “side effects” terrified me.

“So, if we need RT, I’m very worried about the potential for severe RP. This hasn’t been mentioned before. I’d rather not be treated and take my chances, than have any risk of that.”

“Yes,” Dr Carnell replied  ”It’s precisely to avoid that that the treatment protocol has changed. The revised approach is to irradiate just the tumour site and a very narrow column of lung immediately in front. There’ll be 3 beams of radiation precisely targeted towards the same area and the rest of your lung will be left clear. YOU WILL NOT GET RADIATION PNEUMONITIS”.

She said, “I don’t know what you’ve been reading, but really, you need to have studied oncology for six or seven years to understand properly what we are proposing to do. You just have to learn to trust me.”

I got cross. I don’t take well to being patronised. I’d heard the ‘years of training’ line before, and I wasn’t impressed. If the CERN Physicist Prof Brian Cox can explain the creation of the solar system with perfect clarity using a pepper pot, a sugar bowl and an ashtray, then I’m sure Dr Carnell could explain my treatment to me. Frankly, it's her job to explain things to non-specialists. That's what all professionals have to learn to do. Also, there's plenty of people like me, who want to understand what's going on and who don't want nursey reassurance. I'm quite capable of reassuring myself, if I have the information.

I said, “I’ve knocked around the NHS system for far too long to take any doctor on trust. Also, as to what I’ve been reading: I’ve not been in the chat rooms, I’ve been reading proper medical journals: the Journal of Thoracic Medicine, Journal of Oncology, BMJ: that sort of stuff. Probably some of the same stuff you’ve been reading.”

“I’m not stupid” I said, “I will understand if you explain”

Then she told me something I didn’t know: that UK treatment protocols were considerably more conservative than international standards. Therefore, a lot of the stuff I’d seen wasn’t comparable. OK, that was news, and reassuring news, to boot.

I asked for a drawing, and Dr Ball said he’d try to pull up the actual planning picture on the computer, if that would help. Very much, yes. In the meantime Dr Carnell drew a sketch, and I began to see what she was talking about. She was proposing to just treat the pedicle and the area immediately adjacent, in a slim column alongside my sternum. That’s OK. That was one of our preferred options. The big sweep across the whole lung had gone. I’m not sure what the plan is for any further microscopic tumour cells elsewhere in the pleural cavity, but I guess if they exist, and re-grow, they will be away from major vessels and will be operable. That’s for another day.

Why couldn’t she have said all this yesterday? The grief, the stress, the time spent reading medical journals, the sleeplessness, the worry, all could have been avoided with a full explanation up front. This extra appointment could have been avoided. Instead, we’ve had to spend half an hour having a meeting which must have been difficult for each of us, and I’m sure we both had better things to do.

Dr Ball couldn’t get the planning pictures up on the system, and suggested taking me to the planning offices to look at my images on their computers. Yes please. I felt the nerd in me rising up, excited. A chance to look at the RT planning process! Yippee!

Red Line Encircles Target Area: Excision Site, Heart and Anterior Chest Wall.

He showed me the pictures, and they demonstrated clearly the treatment zone and the angled beams. He explained, again, that the risks of RP were very low, “less than 5%”, and that most people who got it, only had a very mild form.

I said, “Yes, but that means for every 1000 people you see with cancers in the chest, 50 of them will get RP. For each of them, they’ll get it 100%.” I know I’m stroppy. That doesn’t mean I’m wrong.

“But nearly all in a mild form, which is treatable. In all my years as a doctor, and all Dr Carnell’s years, neither of us has seen or heard of anyone getting it severely. You don’t need to worry about it.”

“Why’s it on the consent form, then, as a known side effect? Can it be taken off?”

“No, it still needs to be there because it is a risk. But a very small risk.”

OK then. now I understand what's intended and I'm less anxious, I’ll accept a very small risk.

I’m going to remember the words of Dr Carnell :
"YOU WILL NOT GET RADIATION PNEUMONITIS".

We’ll see.

Meantime, I’ll work on my trust issues.

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.

WTF???

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

I’ve been anxious since we were first told I needed RT. It’s the radiotherapy itself, the relentless draining of my energy, the sunburn, the possibility of side effects, the huge unknown-ness of the process.  And the worry that despite all the best efforts of the staff, some cells will still be missed and we’ll be back to the beginning all over again. That and the travelling, the mind-numbing exhaustion of commuting into London 5 times a week with hordes of strangers. The delays and breakdowns, and the sweaty heat, and fast food smells, and the screeching of the brakes and umbrellas dripping on my feet and the lack of space and the noise.

Faceless people crowding in

I’m also scared of how I’m going to feel. I don’t like the feeling that as time goes on, I’m going to get gradually weaker and weaker. It feels as though I’m just starting to get myself back together after the operation, and I’m not ready to go back to being an invalid again. Not yet.

Going into London for RT is not like going into Brentwood for shopping. It’s a big deal. Comes with a whole stash of fears and anxieties, some rational, some not. My everyday mental filters dissolved away and all those 4-in-the-morning worries and questions started blipping through my mind, unchecked. Here’s a selection:

“What if the staff get the dosage wrong? I’m going to die.”

“How will I cope with all of this treatment? I don’t have the strength.”

“I can’t deal with this commuting.  There’s too many people and too much noise.”

“What if my heart or lugs are damaged? I’ll end up an invalid. I’m too young to be an invalid and way too old to start wheelchair racing”

“What if I panic and start to cry?”

“I’m going to see the same staff every day for weeks. I need them to like me. What if they don’t like me? What if I don’t like them?”

“I hope they know what they’re doing.”

“Supposing the machine’s calibrated wrong? The first we’ll know of it is the smell of burning…..”

 “I’m going to meet the same group of other patients every day in the waiting area. What if one of them latches on to me? How do I get rid of them without being rude? Does it matter if I am rude? Will I latch on to someone else, and they’ll have to get rid of me? Should I just hide in a corner with a book? What are the rules for all this?”

“I’m going to feel so ill; I’ve barely got over the surgery…”

“How am I going to cope, especially once I start getting tired?”

“I hate the aqueous cream I’m using on my skin. It reminds me of when I had eczema, smells medicalised and I don’t feel clean.”

“If that woman on the mobile phone behind me doesn’t SHUT UP I’m going to have to kill her”

“What if the RT doesn’t work? I’ll have gone through all of this and have to go through it, and worse, all over again.”

“Everyone else copes, why am I such a wimp?”

Still, whenever a challenge has come along in my life I’ve never been ready. Just like everyone else. Somehow, we all have to just reach down inside ourselves and find the strength to deal with it. But it’s not easy, it does take a certain girding of loins, a gritting of teeth, and a conscious putting of the fear to one side. You just have to rise to the occasion.

---

When we got to the RT department, we waited with trepidation for a few minutes, then we were called in to meet the radiographer. “Hello” she said, “My name’s Kathryn. We’re surprised to see you here today, your appointment’s been cancelled. Dr Khan was supposed to call you, but I’m guessing that as you’re here, you didn’t get the message.”

WTF? I reeled in disbelief. “Why?”

“The treatment planning is taking longer than expected, and the medical physicist hasn’t finalised his workings yet. You’ve been re-scheduled for next week.” 

There’s nothing you can say or do at times like this that make any sense. Clearly there was a fuckup, but it wasn’t Kathryn’s fault: the blame lies with Dr Khan. She was nowhere to be seen.

I felt like just walking out, slamming the door behind me like a petulant child. But I was too confused, and too polite. And hospital doors don’t slam effectively anyway, they kind of glide shut. Also, I thought there must be questions to ask: but I couldn’t think of any. Godfrey managed to avoid an awkward silence, by asking what had happened, why the treatment planning was taking so long. Kathryn didn’t really know, but it was clear that the hospital knew some time last week that the treatment wasn’t going to happen, and had delegated a member of the team to liaise with me, and it seemed likely to us that she’d just plain forgot.

I pulled myself together somewhat, and was able to bleat out a few comments about how stressful this trip had been, and how having got myself into treatment gear, it was extremely distressing to then be sent home untreated. Kathryn replied that the hospital might refund the ticket costs, seeing as it was their mistake. “But you can’t refund the stress though, can you” I said. Nope.

So that was that. We left.

It was only afterwards that we began to process what had just happened. Back on the tube and train again, back into the auditory nightmare that is modern commuting, the babel of voices, the shrill ringtones, the relentless chundering of the wheels and the mind-numbing repetitiveness of the station announcements.  Godfrey and I can’t talk to each other much over the cacophony so we sit in silence, with all the uncertainties and questions we had on the way in plus some new ones:

“How come the RT, which was urgent 3 weeks ago, can now wait another week? Won’t the delay mean the cells are still growing? What if some of them use this extra week to slough off away from the treatment area and move into the other lung? Or elsewhere? How’s anyone going to know?”

And “If a doctor can’t be bothered to make a simple phone call, what else can’t she be bothered to do? “

And “Why is it taking longer than expected to plan this. They knew exactly what my situation was when the first appointment was made. Have they found something unexpected? What are they not telling me?

And “Why on earth is the doctor the person who’s supposed to call me to tell me the appointment’s been moved? Haven’t they got more important stuff to do? Why is it a doctors job anyway, appointments are an admin thing and she's a highly qualified technical wonk, completely the wrong person. Couldn’t the receptionist have done it? It’s only a bloody phone call, for God’s sake.”

And “Those cells are growing, right now. I can feel them. “

And “Why are the trains so busy at 3.30 on a Monday afternoon.  I can’t bear all these people around me. If that woman on the mobile doesn’t shut up I really am going to have to kill her.”

And, because anxiety makes me feel scared, and fear makes me hostile, “Who are all these people? What are these languages being spoken? They’re not tourists, and they’re not poor, they’ve got top of the range mobiles and plenty of bling, why are they even here taking up all the room in this carriage and squeezing me out?”

On Tuesday, Dr Khan did manage to call me, to apologise. So that was all right then. Forgiven and forgotten.  Actually, no. I hate this modern trend for apologies making everything OK. That works when you’re 4 years old and learning contrition, but for grown-ups, it just doesn’t wash. So although I accepted her apology – what else could I do? – I tried to make her understand how exhausting and draining the whole situation had been, in the hope that she would decide she never wanted to have such a conversation again: and so next time, she’d remember to make the phone call.

On Friday, we’ll call the hospital and check that the appointment is real, then no doubt the build up of anxiety will start all over again. Happy days.