At Last - Some News

I saw Mr Lawrence, the Cardiothoracic Surgeon, yesterday.

We finally know what sort of cancer it is: it's a thymoma, a tumour of the thymus. It's a particularly big one. It starts at the thymus below my breastbone and has grown down inside my chest to the base of the ribcage and then across so that it is pressing against my ribs on the right hand side. As a result, my right lung is crushed into a squelchy pocket about half its normal size, and my diaphragm on the right side is probably not working at all because of the weight of the thymoma pressing down on it. That partially explains my exhaustion, also I have quite a bit of pleural effusion - fluid produced by the lung to stop the thymoma rubbing up against and abrading other tissues - and that make you tired, too.

There are 3 types of thymoma: A, B, C: A being non-malignant and C aggressively malignant. Mine's a B, somewhere in the middle. Thymomas which are benign can and often do become malignant, and sometimes the malignancy shows up microscopically, i.e. you can't see the difference by looking at the scans. Therefore the plan is, to try and take the whole thing out and send it off to the lab for a thorough check out before deciding on further adjuvant treatment such as chemo/radiotherapy.

Mr Lawrence says it appears to be encapsulated which is a good thing. He hopes to take it out in one lump, but because it's so big - it's the biggest he's ever seen - he may have to cut it into two pieces. If he does that, then of course he'll break the capsule and there's a risk of releasing bits and pieces back into the chest cavity. But getting it out in one lump might mean he has to move other organs out of the way - stop my heart and move it over to one side for example. Hopefully if that happens he'll remember to start it up again afterwards.

Next: there are 4 stages of Thymoma, stage 1 being a small local lesion on the thymus which is benign, and stage 4 being an aggressive and invasive cancer, invading other organs/vessels in the vicinity. Stage 2 and 3 are in between, and defined by the degree of invasiveness. Mine is probably stage 2 or 3. Although mine looks encapsulated, the surgeon won't know if the encapsulation is complete until he tries to get it out. It's not until then that we will know what stage it's at.

He's concerned about whether the pulmonary blood vessels are affected. These are the blood vessels which take oxygenated blood from the lungs to the heart to be pumped round my body, and then take the de-oxygenated blood back the other way. They're kind of important.

So, what was he like? He was a very nice chap, with a proper public school accent like wot I don't have. He talked to us for about half an hour and answered all the questions, but what was great was that although he was fine talking to us, what really rocked his boat was the prospect of doing some difficult and challenging surgery. His face lit up when he looked at the scans, you could see him holding an imaginary scalpel, thinking through how he was going to make the surgery work. That's what I want from a surgeon! He's going to take it slowly, because getting the tumour out through the hole will be problematic, particularly if there's some adhesions and/or invasions around anything crucial, and so he has set aside the whole morning for little old me, and asked his secretary to ensure he has a fairly easy afternoon afterwards. He'll need some time to recover, and so will I.

The operation is scheduled for 13th June, in the Heart Hospital in Marylebone.

David Lawrence Consultant Cardiothoracic Surgeon

Why do we do this to ourselves?

I think it must be the weather.

You know how it is, when you wake up at 4 in the morning and your brain is under the control of some alien force, and you end up wondering about something that you haven't thought about in years? I remembered back to a beautiful summer's day in the mid 1990's.

It was hot. The NHS had just gone through another of its all too frequent reorganisations - this one merged DHA's, who planned and purchased hospital and community heath services, with FPCs, who managed GPs, dentists, local pharmacists and opticians. The reorganisation was going to sort out the problems in the NHS, once and for all, by bringing all the commissioning of services under one umbrella.

(Of course, each and every NHS reorganisation is going to sort out the problems in the NHS once and for all. The one that's happening now is going to sort out the problems once and for all. And the one after that. In less than 20 years in the NHS I saw RAWP (a huge transfer of resources out of London to the north of the country), the abolition of Area Health Authorities, the introduction of General Management, then resource management, clinical budgeting and performance indicators, then the internal market and GP fundholding, then the merger of DHAs and FPCs. On top of that were more organic changes caused by the realignment of DHAs with local authority boundaries, mergers and separations between hospitals, changing medical and surgical techniques, new hyper-expensive drugs, the ageing population, and the involvement of the Private sector in the provision of NHS care.

Every time there's a structural chance, you need a new management board. New policies and procedures. New signs, letterheads, uniforms, and logos. You've got to have a logo.

Every time there's a structural change, there's new ways of working, new people to get to know, new egos to learn how to work around. And of course, people to say goodbye to - people with a huge amount of knowledge and experience, just gone. Reorganisations are hugely inefficient, with everyone spending the months before in a state of heightened anxiety: and in the months afterwards in the same state - there's often a secondary cull, after some of the knowledge and contacts of old staff have been passed on to the new.

Repeated reorganisations sap everyone's life force. It's a wonder that the NHS works at all, with all the managers constantly diverted by the need to look good in the eyes of the new boss. I discussed this once with Janet Boulton FRCOG, a consultant in Newham, years ago. She said that working in the NHS was a bit like living in Italy, which at the time had a new government every year: "It's all constant change and bickering at the top. But the ordinary people just turn up for work and get on with their lives regardless". But I digress.)

This particular day, a sticky, sweltering day where the air was so humid I found myself thinking in a Louisiana drawl, there was a management board meeting scheduled. Because of the recent reorganisation, board meetings were alternating between the DHA premises (where there was a big board room ) and the FPC premises (where there wasn't). Today it was the turn of the FPC. 15 people turned up, in a room designed to hold 8. Some of us sat round a small table, some sat on filing cabinets or desk tops, some stood by the door. I got a table spot and waited for the iced tea and pralines, but had to make do with hot coffee and stale biscuits.

3 hours later we were still there. I was wet with sweat. I wasn't the only one. People were fanning themselves with the minutes of the previous meeting, wiping their faces on their shirtsleeves, and getting pinker and pinker by the minute. What they weren't doing was stopping talking. Everyone, old and new, were trying to prove themselves ahead of the expected 2nd cull. The pity was, there was so little of worth to say. There's a lovely story told of an American general coming out of a long NATO meeting who was asked by a junior why the meeting was taking so long. "Everything that needs to be said, has been said. But not everyone has said it yet." he replied.

Thinking back, remembering not so much the who said what, or who scored the most Brownie points, but just remembering the physical, visceral horror of the experience, I truly wonder why I and all the others put up with it. Why didn't we insist on going back to the DHA, where at least the room was big enough? Or going outside? Or just shutting up?  There was a collective madness going on, which I was party to as much as anyone else.

Water buffalo at Broomfield Mill

And I wonder how much of this madness I still carry, this obsessive need to accomplish the things I've decided to do even when it's perfectly clear that I'm struggling upstream. I thought I'd learned to let go and chill, but here I am spending hours typing this on the hottest, sunniest day of the year so far when I could be sitting by a river watching the water buffalo. Silly woman.

Shopping

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

Fashion

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

Which brings me to my current predicament.

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

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

Cumulus Tumour?

I don't know where to begin with this post. I feel as though Godfrey and I have been living under a cancer cloud for so long, and yet it's only been about a month. Every time we see a professional, we seem to get a different story. Then it's back home and some intensive hours googling, trying to get answers to all the questions we didn't even know we should have asked, only for the next doctor to send us off in a completely different direction. It's exhausting.

Yes, I know we are making it worse for ourselves with all the googling, but it's not in either of us to just go along passively with the experts. Not in a situation like this.

The Oncologist Judy King said that the MDT had decided that the tumour was operable. Which is brilliant. A median sternotomy is the preferred procedure - it's going to mean cutting the sternum vertically in half and prizing my ribs apart, and having a good old rummage around inside my chest cavity to see how much of the tumour can be removed. There are delicate bits of anatomy in there which need to be left intact, like the phrenic nerve and superior vena cava. Followed by radiotherapy. I'm going to feel smashed around, for a long time. Bring it on.

Sadly we couldn't get to see the surgeon, Mr David Lawrence, to ask any questions. Apparently he'll contact us over the next few days with a view to seeing us next week, probably. We don't know whether all the cancer can be removed or whether some of it has invaded the tissue of other organs besides the lung in the mediastinal compartment- they can't see that much detail on the scans, so Mr Lawrence won't know until I'm under the knife.

I'm ready for the surgery, up for it. It's the waiting that's so draining.

The Phoney War

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

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

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

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

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

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

PET Scan

I had a PET scan yesterday.

UCH PET Scanner

Is it trivial to comment on how uninspiring the experience was? After all, it's a hospital procedure, not Alton Towers, I've got cancer, I'm not on holiday. Nevertheless, the FDG PET/CT scan was by far the most tedious cancer-related experience so far. We went into a dreary featureless room with lead-lined bays and I was given a dose of Fluorine-18 and then lay still for about an hour. We chatted, then I dozed for a bit. Then off to the scanner where I lay down and was whizzed in and out for another 40 minutes or so. It was cold, but mostly just soporific.

I don't mind it being dull, the point was to get good images, so that the team can make some decisions next Monday. But I'm trying to be honest, and it was, well, boring.

I'd expected more sensation from the scanner, maybe something like the fillings in my teeth being tugged, as you get under pylons, or a noise like a tube train like I heard in the CT scanner. Or maybe the occasional disembodied human voice "Breath in Carol, now breathe out". Or some beeps.

We were tired, after another early start, and I was hungry because I needed to fast before the procedure so that the isotope was rapidly taken up by the cancer. Maybe that influenced my mood.

We quite liked the PET chairs, though.

Coping

It's a funny thing, this cancer malarky. I can be fine and dandy, upbeat and logical. I can forget all about it and watch a jolly good (or even half decent) film, AND enjoy it, and be perfectly relaxed. As relaxed as I ever am. Then suddenly, out of nowhere, I can read something, or have a random thought, and instantly all the air goes out of the room and I'm frozen into a blob of terror.

It happened earlier today when I was looking up the figures in the previous blog, and saw that the median survival for lung cancer at UCH was 242 days. That's the median, that's taking all the patients diagnosed and lining them up in order of remaining length of life, and 242 days is right bang there is the middle.That's only 8 months. That takes me just about up to my next birthday.

Jixie in August 2011

It can happen when I look out of the window and wonder whether I'll eat the beans we've planted, or whether I'll be on baby food by then.  It can happen when I look at our lovely old cat Jixie and think how I'm going to miss him when he dies, and then realise with a kind of mental screech of brakes, that I might not be around, that might be just one more awful moment in life that Godfrey will have to face on his own.

It's fucking scary.

I'm trying to push it away and focus on concrete things like appointments and writing this and making dinner and stuff, anything really, to try to avoid falling into that terrifying void that I can feel lurking somewhere in my mind, just out of sight.

Discharged from Sarcoma Service

We went up to UCH yesterday and saw the wonderful Dr Shui from the Sarcoma team, and I was formally discharged from his care.

Following the biopsy last Wednesday, Dr Shui had called us on Friday evening to let us know that histology showed the tumour was not a sarcoma, and therefore he was not the appropriate doctor for me. He could have just discharged me back to Basildon, or to the GP, but he went out of his way to refer me internally to the lung cancer team at UCH, making sure he'd spoken to one of their team about me, and ensuring they had my notes for their MDT meeting on Monday lunchtime. He even managed to set up a preliminary appointment with one of the registrars on Monday afternoon. I will always be grateful to him for giving a level of service and care that I just didn't expect from the NHS.

One of many jobs I held in NHS management was as the Head of the commissioning team for Acute Services, for the residents of Barking and Havering. I learned a lot about hospital services all across Essex as part of that role. As a result, I have a mental list of hospitals I will NEVER willingly be treated in. This list includes Southend Hospital, but not Basildon.

However, it turns out that the Lung Cancer service in Basildon is not a full service. It seems to be limited to diagnosis and out patient appointments. All chemotherapy and radiotherapy is done at Southend. Southend is the kind of place beset by low morale which causes multiple minor frustrations and annoyances. As well, the parking is difficult at best and the public transport links appalling. Although I've no evidence that, in general, the clinical care is any worse than anywhere else, still I wouldn't want to place my life in their hands.


Lung Cancer Treatment: Basildon and UCH Compared
There are 2 main categories of Lung Cancer: small cell and non-small-cell lung cancer (NSCLC). For NSCLC, there a 4 stages of cancer, stage 1 being early in the disease when the cancer is small and localised, and stage 4 being later, after the cancer has metastasized and spread. Both categories should be treated as aggressively as possible, given the general health of the patient.

The following is extracted fom the National Lung Cancer Audit Report 2011

	Average*	Basildon	UCH
% of NSCLC having surgery	13.7	10.8	19.6
% of PSO-1 Stage 3B or 4 NSCLC having chemo	52.8	51.1	64.4
% small cell receiving chemo	65.1	44.4	94.7
% of NSCLC Stage 1 & 2 having surgery	48.8	53.6	72.2
% histologically confirmed NSCLC having surgery	18.3	13.8	21.6

         [Link to PDF]                                         * England & Wales n=32,347 cases first seen 2010 

Clearly, I'd be much better off at UCH and thanks to Dr Shui, UCH will continue to treat me. Before discharging me, Dr Shui explained the results of the tests he had had back: I don't have sarcomatoid cancer, nor do I have a germ cell tumour. There's no indication of, for example, bowel cells in the lung tumour which would indicate it was a secondary cancer. It is a cancer though, and a big one. He showed us the chest X-ray and the CT scans, and the mass seems to fill about a third to a half of my right lung. He said the interesting thing was that I was so well, given that I have such a large mass inside me.

The same afternoon I saw Dr Judy King, Darzi Fellow Medical Oncologist. She was  very approachable and helpful and explained the next stages. At the end of the consultation, we met the head of the Oncology Department, Professor Lee who was a very nice man and clearly one of the leading clinicians in the country in this field. He said he wanted "light the tumour up in a PET scan". So that's now scheduled for Wednesday at 9.00am.
With the PET scan results, and final histology reports, I'm hoping for a diagnosis at the next outpatient appointment on the 21st May, when we'll get an opinion as to whether surgery is an option.

Lung Cancer Awareness Campaign

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

Ricky Gervais: Be Clear on Cancer

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

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

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

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

Campaign Letter from DoH Medical Director (PDF)

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

Abbotswick House of Prayer

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

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

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

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

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

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

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

Biopsy

Each time I sit down to write a blog entry, I immediately get caught up in displacement activities. Check out South Georgia  - it's stopped snowing and the sun is rising and the snow covered peaks are turning a beautiful warm pinky colour. Read the papers. Play patience. Look out of the window, make yet more tea, comb a cat or two - anything rather than sit down and write something about me, and what I've been up to. Of course, it's true: I don't really want to be blogging at all, I don't think people are that interested in what I have to say. And I certainly don't want to be blogging about health problems, they are something that happen to other people, not me. My health has been so good for so long that I take it for granted, and get mildly affronted when I come down with a cold or something.

Which isn't even true, actually. I've had severe eczema for much of my adult life - the sort of thing where my dry skin cracks and bleeds and I can't wear pale colours in case it shows, or where you can always see where I been sitting because of the tell tale dusting of dandruff-like skin fragments around my chair. That went away, then a few years later I had some mental health problems. Then later, I had recurrent skin infections, then alopecia: when you stop and think about it, I'm a wreck.

But none of those things stopped me doing stuff, getting on with life. This, this tumour thing, is stopping me. I find I get really tired doing the least little thing, like making breakfast, or having a shower. I don't want to live in a world where emptying the dishwasher is something I have to recover from - Phew! I've just put away 8 mugs, 2 saucepans, and a selection of cutlery, now it's time for a break! I'm not even on chemo yet and I'm going on like this. I'm mystified as to why, and why so suddenly. I beat myself up that it's all psychosomatic, and actually I'm fine but taking the opportunity to be lazy - who can say?

Me in the UCH Cafe

Anyway, the biopsy.

We set the alarm for 5.30. I was awake at 4 and although I tried to sleep some more, it didn't take. So I got up at half past 4. Light breakfast and a shower, some recovery time, and we got a cab just before 7. Train and tube into UCH: we got there about 8.15 in time to have a cup of tea in "The Cafe" - my, how things have changed. I remember working at Barts in the 1980's when the only facility for patients and visitors was the grubby WRVS canteen in the bowels of the hospital round the back somewhere. It had a giant institutional tea pot full of not quite hot enough tea which was strong enough for depilation should you wish, and a choice of rolls in ham or cheese. An unchanging coffee cake under a plastic lid by the tills, made during rationing and last tasted in 1964. Opening hours: 11 - 11.30 and 2 - 2.15: plastic chairs and wobbly tables and a single lightbulb hanging over the till. By contrast, "The Cafe" at UCH was bright, spacious, and welcoming. It had a huge choice of things to eat and drink and you could watch the world go by while girding your loins for things to come. Well done UCH.

We got up to Imaging just after 9, and were led off to a treatment bay where I was asked the standard questions & got changed into the hospital gown. Then we were whisked down the corridor by a reassuringly breezy radiotherapist to the scanner room. The clinician who was to perform the procedure was Dr Taylor, a very pleasant lady who had a reassuring air of quiet competence. She gave us an absolutely clear and precise account what was to happen and possible side effects, then Godfrey went back to the waiting area and I got scanned. Except I didn't: first the machine broke down, and once they'd tried turning it off and turning it on again, they had to send me away and wait for a man with a hammer to come and fix it. 40 minutes later, we were ready to go.

Siemens Somatom Sensation 64 !

Just before the scanning started, Dr Taylor suddenly realised that poor Godfrey was unaware that there'd been a delay, and sent someone to tell him, so that he wasn't alarmed by my long absence. I was impressed, I was expecting more of an "it takes as long as it takes and you'll just have to wait" philosophy. Thumbs up to UCH, again.

Then all the lying down, sliding in an out of a giant polo mint. Repeated scanning. They scanned me first, to see the tumour and decide how to proceed. Then a guide tube was inserted under local anaesthetic, which was quite uncomfortable at times although not exactly painful. At each stage of the tube insertion, I was slid back into the scanner to check the placement. Then a clipping tool was put down the guide tube and pieces of the tumour were snipped off with a loud "Clip" noise.

Then it's all over, and off to the endoscopy recovery unit to recover. After a lung biopsy, there is a danger of creating a pneumothorax. So they do an X-ray after one hour, and then another 4 hours after the procedure. Then we were good to go. We left the hospital at about 4, and were home by just after 5.

I saw the CT image of the tumour, and Dr Taylor has kindly promised to send me a copy to put on here. But in advance of that, if you imagine your chest cavity as a kind of open figure 8, the tumour appeared to take up about half the space on one side. She said it was well defined, and pushing other vital organs aside rather than engulfing and absorbing them, which is good. The image I saw was only a slice, at one particular horizontal level in my chest. It could be bigger or smaller at another level. But I'm puzzled, because I glimpsed one of the X-rays as well, where it seemed to fill the lower portion of my right lung. In my head I can't square the two. All will be revealed on Monday when we're going back to OP and will, we hope, get a diagnosis.

CT Scan: The clipper is about 2cm beneath the guide tube you can see, and the void below is where the material was clipped from. This view is looking up from my feet: the tumour is in the right lung

We were both shattered when we got back, and I went to bed at about 9 and slept for 11 hours. But I'm still tired now. I'm starting to realise that this time, I have an illness which won't let me carry on as normal, which will force me to confront how much of my own self worth is defined by what I do rather than by who I am. Uncomfortable times ahead, I think.

Scary Moment

I had a scary moment about 4 this morning,when I woke up with a sharp intermittent pain, like a stitch, in the upper front of the right side of chest. I couldn't find a position to lie in which was comfy. I got up and walked around for a bit, and it went away, and as far as I can tell all is back to normal (tumour aside) now.

It was scary because this is how my symptoms started, with a sudden intercostal pain, about 4 weeks ago.

As it's been such a short time - I was working 2 weeks ago and living normally, although coughing and moaning about being tired  - I don't know what symptoms are in the normal range, and which are alarming. And 4 in the morning is a bad time, anyway, for everyone: anxieties feed on the stillness and silence at that time.

Biopsy tomorrow - get to UCH by 9 am, working backwards through a 90 min journey and leaving some margin of error for missed trains delays and general commuting in London means leaving here just before 7. Aaargh!

A Wayward Penguin

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

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

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

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

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

I never said I was nice.

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

Insufficiently narcissistic?

   
I'm not sure I'm sufficiently narcissistic to be a successful blogger. Still, sometimes in life you've got to push the comfort blanket aside and reveal yourself, for better or worse.

This is a blog created because I've just discovered I have a tumour. Like many others, the prospect of a cancer diagnosis makes me feel impelled to write stuff down, both to articulate what's going on in case anyone else is interested, and more importantly, to record something of myself for those who care about me. This is not going to be a blog just about medical matters though, because I'm fairly sure no-one really wants to know the fine details. I plan to make it about the things that interest me, so it'll be pretty eclectic.

About the tumour, though, it's inside my chest but as yet we don't have a precise diagnosis and therefore no confirmation that it is malignant, and no treatment plan or prognosis. We're not sure whether it's in the lung pushing out into the mediastinum or vice versa. We don't know whether the major organs and structures are involved. We do know I'm in no pain and although my breathing is compromised, I'm trying to live a normal life. The truth is that I'm not able to, because I get really, really tired on exertion, so that I can't really do anything useful except make the occasional cup of tea and meal. Godfrey's looking after me, doing all the shopping, housework and stuff. He's also educating himself about all the different cancers, treatment options and so forth: I don't seem able to concentrate enough to wade through them myself.

The doctor at Basildon Hospital, where the tumour was discovered last week, said he thought it was a sarcomatoid carcinoma of the lung, which when you Google it is extremely scary. He referred me to UCH, and we had the first OP appointment yesterday. Dr Shui at UCH said although a sarcomatoid carcinoma is still a possibility, there are other possibilities too, including germ cell and thymoma, and we need a biopsy which will take place on Tuesday 8th May, and we'll get the results at a follow up appointment in the 14th. No news is not exactly good news, because no news means no treatment, and I don't like the thought that this thing is growing inside me, making me weaker, and nothing is being done so far. But we must learn how to be patient.

The start of a journey...

The good thing is, UCH is probably the best place in the UK if not in Europe for diagnosing and treating cancers. Once we know what it is, I'm in good hands. The downside is, the travelling. The trip to Basildon is 30 mins in the car, easy parking, no stress. The trip to UCH is an hour and a half by train, tube and taxi, each way. Pushing through the melee of the west end throngs. All the joys of commuting - armpits, screeching brakes, lurching rolling stock, inane announcements ('for your comfort and security Network Rail has banned all eating, drinking, smoking and breathing at this station') which we thought we'd left behind many years ago. Ho hum.

My life, our real life as opposed to work'n'chores life, has for the last few years been based around getting out and about in Essex, walking. 8 miles, 10 miles, even 24 miles on one gloriously hot sunny day last September. Now I need a taxi to get to Brentwood station - less than a mile.
It takes some getting used to.