Do not go gentle

Last time I wrote about the radiotherapy experience in general as well as the dreaded mask. This time I want to describe the daily routine of the treatment to show respect to the people who go through head and neck cancer as WHNCD approaches.

My radiation centre was in Auckland where the Regional Cancer and Blood Services Unit is behind the main hospital by car but connected to it by foot along deep dark underground corridors. It’s an old worn out unit but there were lots of plants and I found it more welcoming than the rest of the hospital (from the front, from the ground).

Although I felt distanced from my radiation oncology registrar, with whom I got off to a bad start, I enjoyed the rest of the staff . I saw them five times a week for six weeks. Everyone smiled, no-one was grumpy, the receptionist was kind and friendly. There was a giant jigsaw, the usual boating and home design mags and a Zip hot water heater for tea and coffee. Cancer Society volunteers mingled in yellow t-shirts and they wanted nothing more than to make you a cup of tea.

There’s a lot of fluffing around before you start treatment: mask making, CT scan. But once you’re in the system it is a well oiled machine. One appointment a day five days a week right through Easter or any other public holiday. Quite regularly a machine broke down but we were rung and rescheduled. I never missed a day.

“Maureen to Machine 2,” the receptionist would say and I’d go into the changing room, undress and wrestle with the gown that would not do up properly . Because I knew the tongue depressor would hurt I went into the toilet, took some Oxynorm and sprayed my mouth with Difflam. Quite a juggling act with such a tiny sink.

Then it was down a sloping corridor to the radiation bunker with its big linear accelerator and two friendly therapists waiting to take my dental plate and bolt me to the table. I never looked at the machine. I was just focused on getting through.

The final step in the bolting process was always painful because of the tongue depressor but I was a compliant and accepting patient because as you can see from the previous blog I was in a positive mindset for this treatment. This was possibly going to cure me once and for all.

Another psychological element in my favour was that this was just one of many awful cancer treatments I had endured over the years – I was no newbie and well acquainted with pain.

Bolted down, I started a inner chant of a long list I had memorised. I didn’t want to listen to music. I found it distracted me from my mantra. As time went on the pain in my jaw eased a bit and before I knew it, the machine would stop and a friendly voice would say, “All over. You’ve done SO well.”

Once a week I had a CT scan as well as the radiation and the mask time was longer, maybe 25 minutes? I always dreaded that day although dread is too strong a word; I think I was rather numb throughout.

Once a week we went up to the main hospital to have a dental check. This was quite mystifying because there would be a lot of people in that room: a dentist or oral specialist, a speech therapist, a nurse, Cancer Society people and maybe students. Later I found that it was called a mucositis clinic and it was to check the state of our inflamed mouths as the radiotherapy damage to the oral mucosa played out. I remember once that the Cancer Society gave me a week’s worth of soft frozen meals.

Also once a week was the check-up with the radiation oncologist. I saw the same registrar throughout. Very efficient and business-like. She knew what to look out for and gave me the requisite prescriptions for nausea relief, pain relief and constipation which is a huge problem when you are taking opiates. My pain and nausea were well controlled. I never expected to feel nausea though.

I knew my mouth would be full of ulcers and tissue damage after a week or two and it was painful to eat anything other than fortified Fortisip milkshakes. I never let the pain get on top of me due to my previous experience of pain. I took paracetamol and Oxycodone and Oxynorm. Long acting Oxycodone for background control and the Oxynorm for breakthrough pain. I didn’t have throat pain because my radiation was to my cheek, gum, jaw.

The loss of taste after a coup;e of weeks was AWFUL but it was too painful to enjoy eating anyway.

Have I misremembered this? Was it worse than I remember or was I so inured to mouth pain after two previous big surgeries which I absolutely hated? Some patients and carers have horrific memories of this time.

The WORST thing was the general anxiety of getting to treatments. As a solo woman who didn’t like driving in Auckland anyway, I was totally dependent on others. Thirty trips to town from Red Beach. A long way. Of course it all worked out well in the end. The wonderful Cancer Society volunteer drivers did most of it but friends and family took time off work to take me in when they could. I must have remained reasonably well because the car conversations never stopped.

Now, I have downplayed this a bit. Patients who have chemo too have a worse time and it all depends on dose and location too. Some patients have to stop the machine because they want to vomit or have a build up of mucous. Some suffer from claustrophobia and panic attacks. Some develop claustrophobia because of the mask. It is a rather primitive method of immobilisation.

I think I was well enough informed. I certainly had dire warnings beforehand. I was really well looked after and people were kind to me. You don’t want people to be too sympathetic because you want to be treated like a normal person but human connections and friendliness are much appreciated.