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.
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| 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.
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