Hats Off to the Radiography Staff

The Radiotherapy has finished now, and although I'm tired, I'm otherwise unscathed. On the outside, at least. My skin has returned to its normal state, thank goodness, and so far there's no sign of radiation pneumonitis, which was a real fear for me a few weeks back.

The way RT works is that I'll carry on cooking on the inside for another 10 days or so, then gradually start to get better. Some of my tiredness it undoubtedly due to the travelling, and that will improve from here on in, but the bit that's due to the cellular damage caused by RT will continue to build. I have some tightness, or soreness,in my lungs and that might get worse, but so far I'm massively better than I thought I would be at this stage.

I wanted to describe what actually happens in an RT session, before I forget, and pay tribute to the staff who make what could be a technical, almost mechanistic process into a relatively pleasant and friendly series of events.

The RT room is laid out a bit like the sanctuary of some weird techno-church, with a wide open space for the radiographers (the Chosen Ones) to do their ritual tasks, an obsidian altar block, and a massive Shiny-White piece of kit which communes with the God of radioactivity. The sacrificial goat (me) lies on the block which floats up and along into the maw of the Shiny-White, just beneath a large horizontal circular disc about two feet in diameter. The disk is Shiny-White on the top but gunmetal inside glass from below. There's a square area in the centre with 2 combs of lead shielding inside, the teeth of which pull back to reveal The Shape.

Shiny White

The Shape is an extraordinary mystical construct created at the most rarefied levels of the Shiny-White priesthood. Aeons ago, High Planners and Planneresses would spend many days crouched over their sacred tomes and esoteric texts before consulting actual goat bones, but today the Planners apply computerised tomography to virtual goats. They have to ensure that the iso-dose curves created by the accumulation of Shapes is high enough to appease the Shiny-White without killing the goat. This takes many years of study.

The Shapes, once divined, are passed to the Chosen Ones. They in turn, ensure the correct Shapes are applied to the correct goat.

The Chosen Ones, in their blue robes, consult The Book (which looks to the goat like a white lever arch file). The Book rests on the goat's legs and contains sacred runes which must be decoded to ensure the goat's alignment will be pleasing to Shiny-White. As they study the sacred text the Chosen Ones begin their strange and haunting chants: "standard AML", "half a centimetre sup", "1.3 ant and inf" "I've got 91.6" whilst moving the goat into the correct position as dictated by Shiny-White. Occasionally a more junior acolyte (in virginal white) is inducted into the Mysteries, under the beneficient guidance of the Chosen Ones.

Once the goat is positioned to the satisfaction of the Chosen Ones, there are still further final ritual adjustments: 3.2 to the left and 11.6 towards Shiny-White.

Then the Chosen Ones retreat to the vestry. The goat is alone in the room. Shiny-White emits a low humming sound as the disc begins to rotate in a vertical plane about the altar. At some pre-determined point, the humming stops to be replaced by a whirr as a Shape is made in the lead shields. Then another noise: something between a buzz and a beep. This can be momentary, or can last several seconds. When it goes above 10 seconds an alarming clicking noise joins in with the buzz-beep sound. Then buzz/beep stops, and with a whirr the Shape is changed: another hum and Shiny-White moves to a new station, and another buzz-beep. For me, there were 4 angel rays (sorry, angled rays) each time.

Grumpy Old Goat

To the goat, nothing seems to have been achieved by all of this. Nevertheless, the Chosen Ones emerge from the vestry seeming delighted. "Well done" they'd say "you're doing really well" and although the goat is a grumpy old goat thinking, "actually, I haven't done anything at all except lie here" still, the goat is pleased. The altar floats back to its original position and the goat is freed.

Despite the ritual being performed correctly, still Shiny-White is not appeased. More goats must be brought forth, and more, and yet more.

Sometimes the ritual is prefaced by the Taking of the Pictures. "We're going to Take the Pictures today" one of the Chosen Ones will announce. This is allegedly a weekly process, but in practice occurs far more frequently, sometimes happening as often as 4 times in one week. Extra fittings emerge from Shiny-White: two small oblong ears and a huge white square, all of which join in a stately circumnavigation of the head of the goat. Usually, that's it. No change to the aural landscape, just the normal hum. No flashes or lights or strobe effects - frankly, it's all a bit dull. But just once in a while the Taking of the Pictures results in rearranging the goat into a position marginally more pleasing to Shiny-White.

The Vestry

The Chosen Ones spend all day, every day, trying to appease Shiny-White by arranging goats on slabs. It's tough work. Shiny-White requires a constant supply of goats, meaning there are no gaps. So any rearranging of goats, or technical problems, delays, administrative foul ups, late goats, or fools asking dumb questions as I was prone to do, results in prolonging the session so that the ritual continues for an hour or more beyond the scheduled running time.

Despite this the radiographers have been a remarkable pleasant and engaging bunch. Always friendly and supportive, never apparently rushed, and seemingly happy to answer my damn fool questions even though these were prolonging the daily grind. They have clearly found their true calling. I take my hat off to them.

Memories of British Rail

Thursday. Less than a week to go. Seems like a long, long time.

British Rail Sandwich

I feel like an old fashioned British Rail sandwich. Curling up on myself. I wake up in the night and find I've gone into a tight foetal ball. When I force my legs to stretch out, my knees and ankles click, and I think that I've been locked into that protective position for far too long.

I know I should be thinking up and out and tall and elegant, like the AT teacher I am, but I don't have the energy. I'm scrunched, and round, and small and tired. My feet drag when I walk, and I measure my passage across Liverpool St Station by tiny little landmarks. Just get to the ticket barrier. Just get to the information booth. Not far to the steps. Now to the tube entrance. Just up these stairs. Now down. Find somewhere to lean. Wait for the tube.

I'm weary.

Sadly, not sleepy though. At night, when I try and uncurl myself in bed (I lie on my stomach to flatten myself out, as if I were a piece of carpet that's been rolled up too long) my thoughts start rattling around inside my head like ballbearings in a pinball machine: never going anywhere new and never resting anywhere long enough for me to make sense of them.

Years ago when I was young and stupid we lived in Clapton. I commuted through Liverpool St Station every day. In those days station managers used to play marching music during the morning rush hour (like "The British Grenadiers" or "Colonel Bogey" or "God Bless the Prince of Wales") and the game was to try to not walk in time with the music.

Liverpool Street Station

But the best bit about Liverpool Street in those days was the holes in the roof. Such fun! You got to know where they were along the platform. On a showery day, you could stand confidently beside a roof hole knowing that some newbee would stand next to you thinking you knew where the carriage doors would be: then when the rain came pouring through the hole the newbee would get all wet! Tee Hee! Or better yet, stand right under them on cold winter evenings and the soft, beautiful, gentle snow would fall on you and you alone: it felt like being kissed by angels.

The roof has all been fixed now, and I'll be fixed soon.

Half Way There Day

I'm half way there! Oh joy.

This blog is all about my skin care during RT.

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

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

Radiation-induced Eczema: 26/9/2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Postscript: Wednesday 17th October 2012

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

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