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!