Nothing and I mean nothing, can prepare you for the trauma of intense radiotherapy to your head and neck. The first treatment went fine. I was applying aqueous cream three times a day to the left side of my face and neck. I was also using the mouth wash I was prescribed and it all seemed tickety boo.
It all started to hit the fan in week two. My saliva started to become really gloopy. I would need to spit out this gloop every ten to fifteen minutes. My husband commandeered an old plastic bin from IKEA to act as a spittoon for me to flob in. It was never more than three feet away from me at all times. Even now, when we go to IKEA, if I see those bins on display, I shudder a little.
A side effect of this gloop, would be that it would sometimes build up at the back of my mouth, and trigger my gag reflex. So not only was I flobbing every ten minutes or so, but every so often I would be gagging too. Plus this was all happening twenty four hours a day. Nice.
I was also feeling tired to the point of exhaustion. I had painful sores in my mouth and I couldn’t open my mouth very wide due to the scar tissue from my surgery. I also had an angry rash on the left hand side of my face that was basically a template of the mask, that was being fitted to my face day in and day. All in all I wasn’t a pretty sight.
A typical day would be like this. I would wake up at about half eight after an uncomfortable nights sleep due to the gloop that I had to spit out. I would get up and use my mouth wash. I would go downstairs, have some water and then make myself a bowl of Weetabix and mush it all up. If I was feeling adventurous, I may add a banana to the mix. I would then plonk myself down, with my spittoon and watch The Wright Stuff.
I would spend the whole of The Wright Stuff, some two and a bit hours, eating my Weetabix. After breakfast I would normally have to go to the hospital for my treatment. My husband would accompany as would the spittoon. We would walk the length of the hospital to get to the radiotherapy department. This was actually quite nice. For some reason we used to joke around a bit. One day my husband got hold off a wheelchair and was pretending to be Lewis Hamilton with it, driving me quite quickly down the long corridors to many a disapproving look.
Every Wednesday, usually after treatment, we would have to go to the new radiotherapy department for an appointment with Dr B, so she could see how I was getting on. It didn’t help that this appointment was near to where the car park was, so we would have to zig zag back on ourselves to get there. There was a little transporter thing, like you see at airports, that we could have taken, but we, especially my husband, preferred the Lewis Hamilton wheelchair method.
It was at these appointments I also saw a radiotherapy nurse and a dietician. Although there were nurses who delivered the treatment, this radiotherapy nurse was a bit like Melissa. She was especially assigned to me and was lovely. The dietician was equally lovely and quite helpful on giving suggestions on what to eat.
“Protein. Try and get as most protein as you can down you. Eggs, cheese, meat… anything really.”
“What do you mean by anything?” asked my husband.
“I would go full fat on everything. Put cream in your porridge. Put butter on crumpets. Anything to bulk you up.”
We nodded in unison. On our way out, she gave a food diary for my husband to fill in, being the carer and all.
My husband took it rather briskly from her.
“Look… I want to make something clear. I’m Anna’s husband NOT her carer.”
“And… I think I’m more than able to fill in this.” I added taking the diary away from my husband.
“I’m sorry…I just assumed…”
And we left it at that.
After my treatment, once we got back home, I would have a Complan. Complan is a food substitute in the form of a milkshake. It’s a bit like Slim Fast but you can make bigger quantities of it. I was prescribed bottles of Fortisip. I found these good for me, but I know of others who have had all manner of problems with them. My biggest problem with them was that they were too small. If they were in litre sized bottles, rather than small cartons, I may have used them more.
Once I or my husband had made up the Complan, I would watch the news and Doctors, all while sipping the Complan.
After Doctors, I would go to sleep for a couple of hours. I would wake at about four o’clock and then watch Escape to the Country or A Place in the Sun.
At around five o’clock, I would have another Weetabix/banana combination and settle down for the evening. At around seven or eight, I would have another Complan and then go to bed at around ten. The next day I would repeat the whole process.
This went on like this for six weeks, and as you imagine for my husband, it wasn’t exactly a thrilling existence. His main duties in all this was to ferry me to the hospital, make the occasional Complan or Weetabix, empty out the spittoon and picking up prescriptions. The prescriptions were for the mouth wash, the aqueous cream and all manners of pain relief, that I was consuming like nobody’s business.
I remember on one very bleak day, my husband telling me that my body was strong. It could cope with the lack of food. Six weeks compared to the rest of my life was a teeny tiny blip. My body would cope and protect me from the chaos that was being thrown at it. In the end it would come out stronger as a result. I really took strength from this.
My husband also didn’t treat me as a patient in any way. I was still Anna. We would bicker, he would tell me if I was in the wrong, we would laugh and joke. We were essentially the same people. The only difference was that I looked a bit odd, spat and slept more.
My husband also taught me to listen to my body. If I felt tired, go to sleep. Don’t feel guilty. You are not letting anyone down or missing out on anything. Your body wants to rest, so let it rest. If you are in pain, take painkillers. Don’t try and struggle. You are not admitting defeat if you take the pain killers. The pain killers are there to relive pain so take them.
This direct approach worked really well with me as I am somewhat of a faffer. I do faff over everything to such an extent, I am amazed that I am actually quite punctual. I think it’s because that although I faff about making a decision, once I make a decision, that’s that and I plough ahead, regardless. My husband taught me to cut back on the faff, and go for what I wanted to do or rather what my body wanted me to do.
Eventually the day of the last treatment rolled around. My parents came up to visit to cheer my through. My mum came up with an excellent idea to help me through the radiotherapy. She made a box full of presents. I was to open each present after each treatment I had. It was a lovely thought and reinforced the thought that although my mum was some 200 miles away, she was thinking of me and willing me through the treatment.
As I walked down the corridor after finishing my last treatment, I could hear my parents and my husband cheering. I smiled meekly and the nurse asked me if I wanted the mask that I had worn throughout it all. I said that I would and I could see that my mum wasn’t happy about that.
“Why on earth do you want to keep that?” she asked.
“I dunno really…” I replied weakly. “I met one woman who made her mask into a fruit bowl… Maybe we could do that?”
My husband squeezed my hand.
“Come on… lets get the hell outta here…”