Diana and I spoke at an International Patients Day event in Auckland yesterday in order to describe the patient's experience of the treatment. The makers of the machines, Varian, were there and we were celebrating American technology for the US consulate. I had radiation as adjuvant therapy only - to mop up lingering cells after surgery. It was a tough treatment but I didn't have chemo and only one side of my face received the rays. This explains the somewhat upbeat account I gave in my speech here.
I sometimes feel secretly jealous of head and neck cancer patients who can’t have surgery so have chemoradiation and emerge from treatment with the cancer gone, unscarred and reasonably functional. I know they have more gruelling treatment than I had. Nevertheless, the surgery can cut nerves and leave the face and neck never the same again as you can see with me.
I had radiotherapy in April 2014 after having my third primary squamous cell carcinoma removed in seven years. The idea was that radiotherapy would kill any rogue elements that were causing the repeated cancers on the left side of my mouth.
One common factor in patients all over the world is the excellent care they receive in radiation oncology departments. The oncology unit is an oasis of good design. There’s a concerted effort to get the patient through tough treatment. There are Cancer Society volunteers in daffodil yellow and walls adorned with thankyou cards. I personally love this concept where the Cancer Society and hospital staff work together to care for patients -the volunteer driver scheme is the epitome of this.
In the new world of medicine where patient centred care is becoming an increasingly popular philosophy, the radiation units set an example. I can speak only of the Auckland unit but I’ve heard there are places in the US where a hugs lady is available to dish out free hugs.
My Cancer Society liaison nurse said, “They will take good care of you”. The radiation oncologist read me a long list of deadly side effects and then said, “It is tough treatment but we get people though it” Phew!
Many patients find the mesh mask to hold our heads down very frightening, claustrophobic[MJ1] . At the Auckland unit, the technician and nurse talked me through the mask making process in a gentle, reassuring way. I was horrified to see a child’s mobile above the bed. “We make it fun for them, “said the technician. I thought, if a child can do this, then so can I.
My RT was one-sided only, my side effects were manageable and there were only three things that bothered me really.
1. Transport. Would my family and the vol drivers get me there for the 30 treatments right across town? They did!
2. Pain – no pain from RT itself but pain when the mask clamped down on the tongue depressor and stretched my stiff jaw. Solution – a judicious intake of Oxynorm before the treatment and a little rhyme to chant until the mask came off.
3. Dental: I already had poor teeth and RT has made them worse. Can we do more to help people like me avoid dental decay and ORN? Still looking for answer to that one.
Some of our support network who received RT or RT and chemo – no surgery. Liz – back to almost normal after Stage 4 throat cancer; Teddy – no evidence of disease after long period of being refused surgery for base of tongue cancer because of heart condition; Cosette – like Liz, back to herself after serious treatment.
Last week was WHNCD. We set up a stall in a local hospital to raise awareness and show our support. Many similar stalls around the world featured a radiation mask in pride of place. Uh oh, I forgot to do that The head and neck mask is the ultimate symbol of this cancer.
Thank you to Varian and the sophisticated technology that makes this curative treatment available.