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!