Last Wednesday I got news from the Royal Marsden Hospital that is not so good. My tumour on the side of my neck is malignant. It’s an un-differentiated infiltrative tumour, and they don’t have a specific name for it. It’s almost certainly a radiation induced tumour caused by the radiotherapy 20 years ago that helped get rid of an adenoid cystic carcinoma when I was 21.
Surgery will be on 31st October at the Royal Marsden and will last about 10 hours. They’ll aim to get clear margins, but will not get 10mm as usually aimed for, but more likely a few mm, because of proximity to facial nerve/ear/palate/carotid artery. They’ll remove part of my jaw on that side. A plastic surgeon will be present and will perform the facial nerve graft and will fill the dent with a graft from my thigh. Post-op I’ll have facial paralysis on that side. My jaw will be very sore and it will be difficult to open my mouth. The team will keep an eye on the healing of the dent graft before I leave. I’ll be in hospital for up to 10 days, aiming to return in time for my 6 year old Rowan’s first ever dance performance on stage to ‘Splish Splash, I Was Having A Bath’ with his dance class. Can’t wait!
I’ll then have about 3 weeks of rest and recovery at home in Ludlow before IMRT, a more accurate less destructive type of RT. Due to inaccessible RT records from 20 years ago (the team contacted my consultant from back then but they’ve not been able to get the records) I’ll then have a carefully calculated amount of RT for 6 weeks. It’s possible that this may need to be done with me staying in the hospital so they can keep a check on my eating and drinking. This will most probably be done at the Marsden, although they are looking at the possibility of University Hospital in Birmingham. There will then be about 3 weeks of post-RT side effects, which I may also need to spend in the hospital. So that could be 9 weeks away from home around Xmas and NY time, a tough time for all the family. The whole ‘treatment package’ as they called it should end mid-February 2012. 3 months later there will be a scan to establish a base level of information on the status, then 6 months after that another to compare it to and regular scans after that to keep an eye on things.
The surgeon Mr Peter Clarke was excellent last Wednesday, and talked us through each detail in a clear, easy to understand way. He often shows autistic tendencies – a lack of emotion – and I can understand why. It must be tough telling patients this sort of news. But he was superb, though still unemotional, and I have a strong confidence in him and his team.
After this bad news I asked for something positive to end on. He became animated and said they think that they can cure it and they have a 30% chance which gives me some confidence to push my fears away. He also said that I’m extremely unlucky to have got a tumour after RT – 1% to 3% of RT patients get one. He added I’m extremely lucky to have made it 20 years before it actually happened. He also added that after the treatment finishes we basically need to cross our fingers and keep an eye on things. So some perspective comes from all of those comments.
There are some tough times on the big climb in front of me, but I’m trying to approach it in the way I approach my rides. Push myself to my hardest and relish moments along the way – a blast of cold air from the northerly wind, the snap of a broken branch, or the stunning silence of stopping in the middle of a snowbound forest with only my thoughts.
It’s a tough day today, and they come and go. But underneath everything I’ve got my energy and spirit, and my wife and my son are holding my hands, and I can feel them with me.
Thanks for reading.
