Radiotherapy: Round One

This post is the third in a series of pieces describing a time related to my cancer diagnosis and treatment through both my own perspective, and that of my wife, Cathy. This piece also includes some photographs for the first time; I think their inclusion is important to convey my experiences through images as well as words.

Hywel

I was so relieved when my consultant said I would be having radiotherapy and not chemotherapy. For some reason I thought I would be getting off lightly. What harm can a few zaps do lying on a table for twenty seconds? How wrong I was. His parting words to me were, “Radiotherapy isn’t a walk in the park.” No truer words have been spoken.

Prepped ready for the very first session

Firstly a mask was fitted, which after a radical neck dissection was both uncomfortable and painful. My voice sounded like a helium ingest-er after my op, which left me with a paralysed vocal chord. Each time I spoke everyone was in fits of laughter, including myself. Then I had to have all this muck applied to my face so a mould could be formed ready for the mask which would keep my head perfectly still during zapping. At the time it seemed quite cool – and thought maybe I would have some use for it in a future science fiction walk on part!

My radiotherapy was thirty sessions over a six week period during the summer of 2007. I found the process extremely boring but I did not suffer unduly for the first month, and was most annoyed that I couldn’t take my nine year old away on holiday. Toward the end of the thirty sessions, I found I had lost a patch of hair at the back of my head. It didn’t happen gradually, rather it was a ‘there one minute gone the next' moment. One of the nurses pointed out I “wouldn’t be able to play Father Christmas again” after my treatment. I didn’t know what she meant at the time, but the reality is that losing your hair after chemo is temporary, but after my powerful radiotherapy sessions the hair loss at the back of my head and half my face was permanent. If I don’t shave for a few days now I have a perfect line down the middle of my face. One half is full of stubble and the other is perfectly smooth! I’ve now gotten used to semi-shaving and don’t think twice about it.

At the end of my treatment my face had reddened quite a bit and over the next few days gradually worsened. The full horror of my radiotherapy was about to be unleashed. My skin started to disintegrate in front of my eyes. I caught an infection and when my wife was applying bandages on the infected area they just seeped into my body and had to be peeled back out again the following morning. The pain was excruciating. When I walked back into the hospital I looked like something out of a horror movie. My head was bathed in bandages and I was dripping blood everywhere. I was straight on a course of antibiotics and had to be visited by a district nurse every day for three weeks to apply special dressings on the area. At that time, if I heard complaints about ‘man flu’ one more time I was ready to deck someone! Those immortal words came back to haunt me. Radiotherapy was indeed “not a walk in the park.”

About five days after treatment

Cathy 

After Hywel’s neck dissection, the jury was out as to what type of cancer he had. His salivary gland was clear, the tumour that had been removed was declared as secondary, and quite a few lymph nodes were affected. The cancer was poorly differentiated, even a special PET scan didn’t reveal the location of the primary tumour. After seeking the advice of another pathology specialist they decided that the cancer was squamous cell carcinoma - a type of skin cancer, and that the next course of treatment should be radiotherapy. We were relieved that Hywel would not be having chemotherapy although we were warned that radiotherapy was not “a walk in the park”.

The first thing that happened was for Hywel to be fitted with a mask for the radiotherapy. This would take place at Velindre Cancer Centre. Our first visit to Velindre was a revelation to us; it was a really busy, positive feeling place. All the staff were warm and welcoming and it was not the scary place I thought it would be. It was a whole new world going on beneath the surface of the one I had been living in, which I knew nothing about.

The mask fitting was hilarious - maybe revealing a bit of hysteria creeping in after all the tension and worry we had gone through. Hywel’s voice had changed from the sexy gravelly voiceover voice to that of a school girl, with a school girl giggle to match! His laugh was infectious and the poor nurses in the mask fitting area were in hysterics too. We all struggled to stop as Hywel had to stay still whilst they bandaged his head like a Mummy and put a plaster of Paris type mixture over that. Luckily it dried really quickly so he didn’t have to lie still for too long.

The final mask was made of clear perspex and was the shape of his whole head, with holes for his nostrils and mouth. If it had been painted black he would have looked like Darth Vader!

The radiotherapy was to be every day for 6 weeks. The doctors had signed me off work with stress whilst Hywel had been going through his op and we were waiting for results. I’d been back at work for about a month at this point, and was worried about taking more time off. I took some leave and my boss agreed that I could have a laptop so that I could sometimes work from home around Hywel’s appointments. Unfortunately all the treatment coincided with the school holidays so we weren’t able to go away anywhere with the two youngest kids, and Adam who was 15 at the time had to look after Elliott who was 8, a fair bit whilst the treatment was going on. Elliott came to the radiotherapy appointments a couple of times, bribed by a cup of tea and a kit-kat from the hospital’s WRVS cafe!

The sessions were very quick as long as the machines didn’t break down! Hywel went through the treatment quite smoothly. His skin went pink, then red and he lost his facial hair on one side of his face. He also lost a fairly large patch of hair at the back of his head, behind his ear. It was only at the end of the treatment that his skin started to blister. The nurses gave me some dressings and told me to bathe the area, showing me how to change Hywel’s dressings. “Any problems just give us a ring” they said. It was horrendous. Hywel woke up each morning with dressings stuck to his neck and shoulder. I was trying to bathe the area and Hywel was squealing with the pain. I rang the radiotherapy nurses and they told me Hywel should take painkillers before we changed the dressings. We tried this for the next two days but the pain was excruciating for Hywel. He skin was coming away in chunks and he was bleeding. We would both be crying; Hywel from the pain, and me because I was inflicting so much pain on him. I rang the nurses again and told them I was certain I wasn’t dressing the wounds properly. They said they were sure I was but if we wanted to pop in they would have a look.

Hywel looked a sight, swathed in bandages with blood and bits dropping off his ear. It must have scared the people in the waiting room waiting to go in for their treatment! The nurses were a bit shocked at the state of him. They apologised and told me no wonder I’d been worried. They arranged for the district nurses to call and do the dressings and put Hywel on antibiotics as he had an infection. The district nurses ended up getting Morriston burns unit to send them special dressings and came for nearly 3 weeks until the wounds started to heal. Radiotherapy had been a marathon, not a walk in the park!

More post-treatment