I had my results meeting down in London at the Royal Marsden on Wednesday, 16 days post parotid cancer removal. The meeting went really well, and I will now have 6 weeks of radiotherapy starting 8 December, finishing in time for February and a chance to get stuck back in.

The fear had been building over the previous days, despite massive efforts to focus my mind on what the real probabilities were. A counsellor gave some good tips that helped me through the past couple of weeks, and to move forwards into the unknown: imagine I’m in a dark tunnel, I’m carrying a light. I can’t see what is not in the light, I can only imagine what it might be. As I move forwards the light moves with me, and things become clearer and I work out how to deal with them. Without moving forwards, there is only darknes, what I know, and what I fear.

We made our way down there in a state of numbness and only singing this song very quietly to myself could make me do anything other than feel despair and deep fear.

http://www.youtube.com/watch?v=PZyU7tHO_1E

Mimicking Stan’s high pitched finish brought an inner smile every time, virtually to the door of the Marsden. We checked in, and got called up 5 minutes later.

The surgeons are very happy with the surgery and my recover, they feel they removed all of the tumour which was deep in the parotid gland area, up towards the base of the skull. My ear has been a bit sore recently after surgery, and it seemed to make sense when they said they had essentially removed my ear, done their bit, and then put the ear back on. Eeek. They also gave me a minor facelift to help counteract the facial droop due to the facial nerve sacrifice. All this, for free? Nicely.

The oncologist was next. They were aiming for 5mm margins all around, and he feels the surgeons did an extremely good job and probably got those margins. But because the tumour was up against the bone behind the ear, and some of that bone got drilled to dust and they cannot analyse it, that negates any margins they have elsewhere. They made a recommendation to have 6 weeks of radiotherapy.

In 1992 I had 5 weeks of radiotherapy when I had cancer in the roof of my mouth. My hospital from that time, the Royal Berks in Reading, appear to have no RT records despite pressure from the Marsden team. They are under legal obligation to hold them for only 5 years, I think. The Marsden won’t treat the same area twice due to high likelihood of osteo radio necrosis (bone death), so I was questioned in detail about where the rays came from all those years ago, and where I experienced particular side effects like hair loss and sore skin. This information combines with the results of a CT scan which I will have next Friday, and then gets put into an iPhone app to determine where the 3D conformal radiotherapy will come from, avoid (spine, brain, c*ck), and extend to.

I’ll be staying in London in the week from Monday nights then travelling home for the weekends to see the folks and ride bikes. My Dad will come and stay, and I’ll aim to meet up regularly with folks I know in London to keep things as social as possible.

RT is very tough, and will make me feel very tired, give me a terrible sort throat and mouth ulcers, and tightening jaw muscles will make it difficult to eat solid foods. Weight loss is expected, so I’ve been told to put some weight on before 8th December when it all kicks off.

By late January the RT will be finished.

It’s going to be a tough time, but the light’s moved forwards and things have become a bit clearer.

Looking at first post-op short bike ride tomorrow, and my son Rowan’s dance performance was incredible last weekend.

Now where’s that coffee cream puff.

Ashley

good luck with it all mate.
sounds like you have had a very tough time of it. hope everything ends up ok for you.

and keep on keeping on. 8)

Inspirational attitude, cakefest.

All the very best for the future.

thankfully that light you are carrying appears to be a six-pack of Exposure MaXx-D’s … barkstrong Ash :O)

Bets of luck for it, great mate of mine just finished a 7 week RT course and he is going well. Chin up and stay positive.

Will be singing that song in my head all day! 😀
Amazing attitude. Wishing you a very short tunnel and a very long bright future..