Radiotherapy: a life saving circle of hell

In the waiting room for radiotherapy there is a hand bell.  It sits on a table between the groups of bolted down chairs, one end of the alcove that is designated as the waiting room off to the side at the end of the long corridor.  At the other end, high on the wall there is a television, muted, showing news in subtitles.  Depending on how much you want to divert yourself from the room you find yourself in, you can read the subtitles.  On a good day you can just sit and chat amiably to the couple sitting nearby.  It is not always obvious which member of the couple is about to go and change.  When the name is called, sometimes you are surprised by who gets up.

There are four cubicles, at the top of the long corridor; in them are baskets for whichever of your clothes you have to remove before treatment.  The gowns are the same whatever.  A jaunty print with ties up the back.  Once your name is called, you get up and try an unselfconscious walk to the cubicles.  I don’t think I managed it once.  Except when I was down with machines 5 and 6, in the new wing, where everything is really quite chummy.  That day the machine failed and I lay, striped to the waist with my arms about my head for many long minutes until a technician was called.  Before his arrival, my top half was covered ‘for my own modesty’.  It made me laugh.  Between 4 and 6 radiographers had prepped me for treatment and suddenly a man in a tie couldn’t see my chest.  I didn’t give a fig.  It didn’t feel like my body anyway.

Once I was changed, it was onto the plastic chairs outside the room with the machine that was yours for today.  Almost always I had the one beyond the one that was being refurbished.  It was a mistake to get too dependent on the staff, because, however lovely they were, their shifts changed, so you couldn’t rely on having the same people to be there.  Their manner didn’t change though.  Professionally friendly, relaxed enough to make jokes and aware that what they were doing was life-saving, or not.  Even with someone like me, there is not guarantee I won’t be marching up that corridor again sometime.   They did their best as people in a situation where their best might not be enough.

Once the room became free, and I began to recognise the other people in gowns coming to and fro, even if we never did become chummy like you would on a long train journey, my mind went into automatic.  The room was very large, and the machine was vast.  I left my basket of clothes on a chair in the far corner near the exit (there was no door, just lots of thick walls).  The table had been prepared for me, and up I popped.  There were rests for my arms as they had to be above my head and completely still.  The radiographers marked me up using the tattoos as marker points with a light shone from the machine.  This was not a chatty time.  They needed to get me absolutely set up for the rays.  It took precision, expertise and teamwork.

Before treatment started, I had been initially measured up in a room about half way down the long corridor.  It was there they sorted me out, and I got tattooed.  Twice.  I went for the first appointment, did my stuff and got my tattoos: three, one in each armpit and one in the middle of my chest.  I hate them and hated having it done.  Goodness, did they hurt.  About five days later I got a call explaining they wanted to try me with a breath holding technique.  My tumour was on my left hand side, and therefore if they could move my chest away from my heart, it would be a good thing.  Yet again I set off to hospital, as ever praying for a car parking space.  Once I’d checked in at the desk at the front of the Colney Centre, I positioned myself on the radiotherapy side of the big waiting room where, by and large, the people had hair, or at least more hair than the patients waiting for the Weybourne unit, the chemotherapy day unit. I’m not sure I shall ever be able to go to the Weybourne, a village on the coast of North Norfolk, without a memory of the comfortable treatment chairs, the volunteers in their red waistcoats bringing coffee and biscuits in packets, and managing a hospital lavatory with a drip and pump in place.

The second visit to the preparation room was an altogether softer affair.  The radiographers weren’t sure I could do the breath hold process, but I said I’d try.  Isn’t it funny, I’m a more or less lifelong asthmatic with lung function far below that of a normal person of my age and conformation, and yet, I could hold my breath firmly and steadily for longer than they needed.  The downside was that I had to have more tattoos.  Ok, they are tiny dots smaller than most of my moles, but I loathe tattoos.  However, I have long given up making a fuss about them as I have so much scar tissue around my chest and breasts, worrying about 6 dots seems petty. 

I tried not to allow myself to feel too much at that time.  I knew I had to have radiotherapy as a preventative treatment, and after all the chemo, this seemed very easy.  Or at least it did to start with.  I had four weeks of treatment, three weeks in the general area and a high intensity week at the end.  None of it hurt.  I did need some E45 cream by the end, but I’m told some people have bleeding sores with radiotherapy.  Others tell of extreme exhaustion.  I was working part time, as my oncologist suggested would be possible.  I was doing fine.  It didn’t hurt, I was treated with respect and I had the best available treatment there for me.  Yet it was hard just lying on that table day after day, staring at the machine as it performed its programmed routines whirring round me.  All the staff were in their room two walls away.  Just me and the machine in a big grey room.  Me, staring up to what I imagined to be the eye of the machine, fringed with rods that moved in time to the program. 

‘Take a deep breath and hold,1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,and relax’ came the voice over the loudspeakers.  There was a video camera link to the radiographer’s room, so I wasn’t abandoned to the machine; I being cared for as best as they could.

Somedays the radiographer on calling duty would go faster.  I got to know the speed and how long I needed to be there.  I learnt to understand where my body needed to be and how being completely still was essential.  I was congratulated at being very good at the task.  As the days wore on, I worked out which radiographers were good at their job and who were not.  The ones who couldn’t do it accurately, who would make a mess of judging when I was in exactly the right position or, not mark me up precisely.  I never commented.  It was only my assessment.

Then, one day my mind closed down.  Somehow lying there under this enormous and dangerous machine ate into me.  I kept going, but I was changed.  Inside I froze.  Parts of me are still frozen, and I have no idea how and when the defrosting will begin.

The idea that I wasn’t worth the effort and there wasn’t any point carrying on living didn’t start suddenly.  As I haven’t written anything for many months, I’ve had to go back to my blog to read how I was before radiotherapy.  It seems clear now that I was heading for a bit of a drama, and thus it came to pass.  Fortunately, the Big C is geared up for just this sort of eventuality.  Whilst well-meaning others had been trying to encourage me to have counselling, I knew I didn’t really need it.  Until now.  I phoned up and got one of the staff who knew me.  I tried to explain how I felt.  She said ‘You’ve hit the wall, Sarah?’ ‘Yes,’ I gulped and burst into tears.  My counselling was booked and in I went.  Six sessions later I was ready to face the world again.  I had even be brave enough to ask what the counsellor said to people who would not get better.  Gently, and with practised care, she said she tells people their body has tried as hard as it can. This is very comforting.  And helps me face the finality of my life, of all our lives.  We can only try as hard as we can, we can only do our best.  But what if we haven’t ‘done our best’ like we were urged as small children?  What if we have lived flawed and indulgent lives, never quite saying ‘no’ the next biscuit?  Is that as hard as we can?  That is the pointless torture of the good and normal person.  Doing our best is just that.  Perfection is someone else’s judgement of your performance.  No sane person would ever tell themselves they are perfect, but so many of us berate ourselves for normal imperfection.

I try to recite these truths so hard won as I plough through my life after treatment.  The story of the injections that followed radiotherapy is for another time.  I didn’t ring the bell in the waiting room.  The sign next to it encourages you to ring to sound the end of your treatment.  Others did it in relieved ecstasy that it was ‘all over’ and they had ‘beaten it’.  My cancer was part of me, and as such, ‘it’ cannot be beaten.  Is it all over?  Only time will tell.