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.

Lung Function Tests

Before the Radiotherapy (RT) starts, I need to have my heart and lungs checked out. This is to put down a benchmark, to see whether and by how much their performance is affected by the treatment. If they are affected (and they probably will be) there's no fixing them, it'll be permanent. So the purpose of the tests isn't so that the medics can some how return my vital organs to their pre-treatment state, because they can't. It's more so that other patients' treatment can be amended, if necessary, in the light of my experience.

I find this all a little bit worrying. I realise that in the modern NHS, improvements in many areas are generated through studying what went wrong in the past. I get that dosages in RT are based on previous experience: in the past some people have probably been given doses that weren't strong enough and so didn't work, and others have been given doses that caused major problems. As a result, today's dosages are reasonably well tolerated by most people. Still, when it's personal, it feels a bit, well clinical. Which of course it is.

Lung Function
There is a narrow, airless corridor in the heart of UCH with chairs all along one side and doors and a small trolley along the other. This is where patients wait for blood tests. The trolley is for a signing in book, so patients can be seen in order. There are usually more patients here than chairs, and the patients aren't routinely told about the signing in book, which makes for confusion. When a patient turns up in a wheelchair, there's not enough room and furniture has to be rearranged. This makes for short term chaos.

At the far end of this corridor, next to the end wall and the water cooler with no cups, is the Lung Function laboratory. My heart goes out to the people who work there.

There's 2 doors: Lung Function and the Sleep Laboratory. A note on the Lung Function door tells you to knock and wait, which I did. A man opened the door and appeared surprised to see me. I explained why I was there, and showed my appointment letter, and he told me to sit down and wait. A few seconds later he came out of the room, squeezed past my legs and disappeared into the Sleep Laboratory. A moment later, he came back the other way. Then another chap came out of the sleep lab, squeezed past again and disappeared into the lung function lab. This was all starting to feel faintly silly.

When I finally got into the surprisingly roomy Lung Function lab, the chaos and confusion disappeared and quiet efficiency reigned. I was to have two different tests, both involving a sequence of breathing in and out and holding my breath. The first measured the expansion of my lungs; the second, the efficiency of my lungs in passing oxygen into and carbon dioxide out of my blood stream.

Lung Function: Spirometer

The technician seemed a nice chap. His role, apart from the technical aspects of manning the equipment and monitoring the tests, was explain the particular sequence of breathing, then talk me through the tests. He did this by sort of acting out what I was doing.

"Breathe in, in in in in in in....and hold - hold - hold - hold - hold - a bit more, just a bit more......and out, sharply, keep going, keep going, keep going, and.... relax."

All the time breathing in, and holding, himself. I guess his lung function is pretty damn good, after doing that for twenty-odd years.

Spirometry: FVC and FEV ₁ = 107% over predicted
and  a FEV1/FVC  of 85.1%  !!!

I asked about the second test, measuring the efficiency of my lungs. How does that work? Apparently they use proxy gases, at predetermined proportions, and by measuring the mix of gases exhaled that can tell how well the lungs have done their job. The proxy gases are helium for oxygen and carbon monoxide for carbon dioxide.

I couldn't help myself. I tried to fight it, but it just had to be said.
"So you know if my lungs are working really well if my voice goes up two octaves and my lips turn blue?"

"Er, no, that won't happen, we only use a small amount mixed with air..."
Oh dear, I'd thought it was funny, clearly I was on my own. To my shame, it didn't occur to me until the next day that I probably wasn't the first to crack that joke, and after 20 years it had undoubtedly worn a little thin. Oh well.

Echocardiogram

Back to the Heart Hospital for this one. I didn't know what to expect as unusually I hadn't done any research, but it was just an ultrasound. Pretty pictures,though.

 

Echocardiogram of my heart

RT starts on Monday 3rd September. I'm dreading it. Mostly, the drudgery and stress of the commuting: 3 - 4 hours a day, 5 days a week, getting increasingly exhausted from the treatment. But, I'm starting at 2 pm, so should be able to miss both rush hours. Also, I'm not looking forward to feeling rough for several weeks, but I know it's all in a good cause.

New Tattoos

So I'm to have radiotherapy.

Dr Carnell has prescribed 50.4 Gy ("Gray") to be given via Intensity Modulated Radiation Therapy (IMRT) in 28 fractions, at 1.8 Gy each time.

First, some definitions.

Gray: according to Wikipedia, one gray is the absorption of one joule of energy, in the form of ionising radiation, per kilogram of matter. The unit is named after the British physicist Louis Harold Gray (1905 - 1965)  whose work in the 1930's, 40's and 50's laid down much of the groundwork underpinning modern radiation therapy. A whole body exposure of 5 Gy generally leads to death within about 14 days: I'm only having a small part of my body treated, and although the local area will be damaged, it will eventually recover. I hope.

 IMRT: this is a kind of high-precision radiation treatment delivered using a linear accelerator (linac). The intensity of the radiation can be changed during the treatment to allow a more intense dosage to the tumour cells whilst sparing adjoining healthy tissue. The targeting of the radiation beams conforms to a precise 3-D image of the tumour cells. Shaped radiation beams are aimed from several angles of exposure to intersect at the tumour. This provides a much larger absorbed dose there than in the surrounding, healthy tissue, allowing higher dosages to be given with fewer side effects.The radiation beams may be moved during treatment, and the intensity changed,  dozens or even hundreds of times.

Fractions: the dose of radiation required is spread out over days or weeks, with the patient receiving a fraction of the total dose on each visit. This allows healthy cells to recover somewhat between sessions, whereas tumour cells are generally less capable of repairing themselves. Despite the high degree of precision allowed by the IMRT machine, it is inevitable that the radiation beams will affect healthy tissue as well as tumour cells. In my case, the beams have to go in through skin, fat, muscle, and bone before they even get to the treatment area. Then out the other side. There will be some damage to healthy cells, but this should repair.

That's the theory.

Now the practice:
Here's a nice little video, courtesy of UCLH, as an introduction to radiotherapy planning and treatment at UCLH.

Radiotherapy at UCLH

For me, the process started on 17th August with treatment planning. There are practical considerations. Delivering the treatment requires repeated visits, with the patient in exactly the same position each time so that the doctor can locate the target for the IMRT, again and again. This requires the correct alignment of the patient in relation to the linac. Even a slight movement of the body relative to the equipment can cause the radiation beams to go off target. Then there are theoretical considerations: the IMRT machine is a hugely flexible tool, but three dimensional planning for this type of conformal radiation is much more complex than for traditional one-slice radiation therapy. Calculating how to do all this takes time and care. There are various techniques to ensure the correct alignment including laser lights, field lights, skin markers and stereotactic modelling, but the first task is to ensure that the patient stays still within the machine, in the same position each time. In my case, this required making a body mould.

A friendly and kind technician called Colin led me into a room containing a couch with a solid surface and notches round the edge, designed to hold a variety of fittings. It was set up for me, with a metal frame at the head end. In front of this was a bright blue bag, which looked like a large, under filled bean bag. Colin explained the treatment process, with particular emphasis on the side effects for my skin. I'm going to get a sunburn-like effect across the right side of my chest. He warned me to avoid perfume or deodorant on the skin until it heals, to stay out of the sun for a year after treatment, and to steer clear of astringent soaps. I need to use aqueous cream to clean and condition my skin for the forseeable: and he gave me a big 100g tube to take home with me.

I lay on the couch with my head on the bean bag and my hands grasping handles behind my head. Colin and his colleague adjusted my position a few times, checked that I was comfortable, then pumped all the air out of the bean bag. This made the whole thing solid, preserving the indentations produced by my head and arms. The bag actually contained polystyrene beads, which lock together when the air is removed so instantly creating a custom made portable, lightweight and rigid piece of apparatus.This will follow me to each of the radiotherapy sessions, ensuring that the alignment of my upper body stays the same.

R/T Mould

The second task was more complex. The target zone of the radiotherapy is inside my lungs which is a) invisible from the outside and b) moving constantly, as I breathe. The radiographers needed to make visible marks on my skin which can be used to align me on each treatment, and to model my breathing so as to fine tune the IMRT as much as possible with my natural movements. So I and the body mould were taken to the radiotherapy planning department.

There were two radiographers, both called Jo, taking me through this stage. I went into a room labelled "CT Simulator" which was confusing as there was a real CT machine in there. Maybe it simulates something else, like radiotherapy. Anyway, the body mould was placed in position at the head of the machine, and I was asked to undress my upper body and get onto the couch. I then lay down with my head and arms held in position by the mould.

I couldn't really see what was going on, but apparently thin green laser beams lined up on my body along the midline and across my chest forming cross hairs. A small oblong white plastic box with black ends was taped to my abdomen aligned to the longitudinal beam, presumably to monitor the rise and fall of my stomach as I breathe. Pen marks were made on either side of my chest, and at the site of the cross hairs. Godfrey and the Jo's left the room and I lay in that position for several minutes while the Jo's monitored my breathing from a side room. Then the machine started up, and I had yet another CT scan.

After the scan, one of the Jo's came out and checked the pen marks she had made. Seeming satisfied, she got some ink, and a needle, and made them permanent. These can now be aligned with laser lights on the linac, ensuring I haven't rolled slightly, or moved down the couch. I and my cancerous cells will be exactly where the accelerator expects them to be, enabling optimum zapping.

3 little scratches, 3 new tattoos. Brings my total to four, so far. The first one's still my favourite!

Four Tattoos and some freckles

That was it, I was done. The treatment itself starts on the 3rd September, so I have a few weeks of normal life before then. Although it was overcast, the day was growing warm and so Godfrey and I headed off to the Founder's Arms on the banks of the Thames for well deserved sandwich and a pint. Just as we arrived the sky cleared and we sat there in beautiful sunshine, with a refreshing breeze blowing in off the water. Lovely.

A Gear Change

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

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

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

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

Type B2 Cortical Thymoma

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

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

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

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

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

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

Sir Chris Hoy 2012

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

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

Cautious Optimism

After another X-Ray, I saw Mr David Lawrence, the cardiothoracic surgeon, on Monday 9th July 2012 at the Heart Hospital.

Mr David Lawrence BSc(Hons) MBBS FRCS FRCS MS

Broadly speaking, it's good news. The tumour was removed intact (given it measured 7.5 by 5.25 inches at one point, that was no mean feat!) and has since had a through going over by the histopathologists. It seems that it was completely encapsulated, and had not invaded any parts of me. For thymomas, there are several types and stages:  type A is completely benign, and type C is malignant, fast growing and metatasizes. B1, B2 and B3 are in between and have malignant potential. Mine was a B2, on the cusp of malignancy but since it was fully encapsulated, it hadn't invaded any other tissue of organs. What a relief.

Cautious optimism though: there are still causes for concern: little Ridley had a healthy blood supply (which was why he hadn't felt the need to break out of the capsule and feed off me) provided by 2 pedicles. These were snipped and clipped during surgery. There are tumour cells at the incision site on the tumour, therefore probably also on my side. These can re-grow into new tumours. Even with the total resection of a thymoma, which I have just had, there is still a significant chance of recurrence.

There is no agreed clinical protocol on how to manage this situation because thymomas are rare and varied, and cancer management techniques are evolving very quickly so there's no point in looking at statistics from 20 years ago. Mr Lawrence seemed to think that a watch and wait approach was best, rather than subject me to any radio or chemotherapy: that is supported by the most recent research, which suggests that complete resection is the gold standard of treatment for a B2 thymoma, and that adjuvant therapy probably has no impact on the outcome where there is no invasion of neighbouring tissue. [1]

However, that's general guidance.  As a thoracic surgeon, he doesn't think he needs to refer me on to an oncologist, he will discuss the specifics of my case with the UCLH oncolgist Dr Dawn Carnell who has a special interest in thymomas and decide how to proceed after that.

The other cause for concern is that while the medics were working out what was wrong, I had a biopsy. A needle biopsy of a thymoma can "seed" a new tumour in the mediastinum, often near the biopsy site. Still, the biopsy seemed to be the best decision at the time, in order to reach a definitive diagnosis after so many false leads. If I keep having scans, any new tumour will hopefully be picked up nice and early and dealt with promptly.

So we're not out of the woods yet, but we can see the open fields: and although the next bit of the path might meander a bit, there's a lot more metaphorical sunlight sparkling in the air now than there was a few weeks ago. Sadly, no actual sunlight, just variations on the drizzle/downpour spectrum, but you can't have everything.

Next step: see what Dr Carnell says about usefulness of adjuvant therapy or otherwise, then probably another CT scan and appointment in 3 months.

1."Which stages of thymoma benefit from adjuvant chemotherapy post-thymectomy?" Attaran S. et al.  http://icvts.oxfordjournals.org/content/early/2012/05/01/icvts.ivs133.full

Slowly Improving

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

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

Healing on the outside

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

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

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

Tile House Surgery

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

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

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

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

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