Week 1 - Disco Day 1

An enormous thank you to all my lovely friends and family who sent me cards, flowers and messages of support – these really meant a lot this morning. I wasn’t really sure how I should be feeling if I’m honest. One minute I was thinking this will be nothing, it’s just day 1, no big deal. The next I wanted to burst into tears because the whole experience was so overwhelming and scary. I am told that the first 1-3 weeks are usually okay, and that things get progressively worse from week 3 onwards, so in theory, the next few weeks should be manageable, but then it’s downhill rapidly from there.

I was taken to the radiotherapy suite – it sounds so fancy doesn’t it? As though I’m in a 5-star hotel rather than a hospital. The mask was put back on – tighter than I remembered, which was likely due to the fact I’ve just come back from a week of mass indulgence on holiday where I was trying to put on weight, so maybe this has translated in a fatter face and neck?! I had a panic when they first bolted it, and asked them to remove it, which they did straight away. Some slow breathing, some loud music and a lot of courage later and it was back on, and this time I was okay. The song they played made me smile – ‘Wild Ones’ by Flo Rida. It worked at keeping my mind occupied too. With the colour of the lights and the music itself, you could be forgiven for thinking you were in a disco - apart from the mask of course. 

The actual radiation process only takes a few minutes, but the whole thing is around 20 minutes as they need to get me into position, put the mask on – gradually so I don’t panic, bolt me down and they then leave the room. An image is taken to check everything is in the right place, the staff then come back into the room to take the panels away and then they leave again. The lights go off and I am left staring at a red light before some green rays appear and the machine starts to move around my head. The lovely staff at the hospital were so incredibly patient with me, acknowledging my fear and allowing me the time I needed, so I am very grateful for that.

Afterwards it was straight back in the car for the 75 minute journey home. I felt a little strange, but I suspect that was more mental than physical, and I felt nauseous but that could have been the car journey. I had some lunch when I got home and I felt fine, although I had a bizarre taste of rosemary after eating, even though I had had a ham sandwich. Hmmm.

I kept myself busy for the rest of the day as the girls are still off school, so a trip to the supermarket as Lily wanted to cook dinner (hooray!), a dog walk followed by picking damsons so we can make some jam again this year. Let’s hope I can still taste it by then!

Down with a bump

We are back from holiday, had an absolutely fantastic time and I have had to come down to earth with possibly the biggest bump I have ever experienced – radiotherapy starts tomorrow. I have been in a merry state of denial for the past week, helped of course by the delicious rosé by the pool every lunchtime. We met some lovely people; missed the wonderful friends we met there last year and we promised we will return next summer. It is rapidly becoming my happy place.

First session is tomorrow at 10.30am. Off to bed but not expecting to sleep a wink. It’s like Christmas excitement in complete reverse. I am dreading it.

Counting down till D-day

I haven’t written here for a while. I have been recovering well, and have been spending some lovely time with my girls over the summer holidays. After 20 years of working every summer apart from those I was on mat leave for (and one I took parental leave), it is really nice to be able to enjoy the full summer with them for a change. Nice, but also exhausting as we have been doing mostly non-stop activities - I don’t think I have ever shopped as much as I have this summer! Add in recovering from major surgery and re-learning to eat and drink, and I am feeling quite tired.

It doesn’t really feel like a physical tiredness as much as a mental overload. Even though it has now been 3 months since diagnosis, I am still processing the fact I have cancer - or hopefully this is now past tense as I write this. I listened to a really interesting ‘You, Me and the Big C’ podcast recently, where a guest speaker joined who was a breast cancer specialist doctor, who had also had breast cancer herself. And not just once, but she has also had a recurrence. What she said really resonated with me - that it doesn’t matter what your statistics are, the mental anxiety about recurrence is the same whether you have a 10% chance or recurrence or a 90% chance of recurrence. It either comes back or it doesn’t, but you will never know if it will come back until it does, or until you die a different way. Sobering words that really struck a chord with me.

My odds in theory are really good, yet I am terrified of being in the recurrence bucket (as are all cancer ‘survivors’) especially as head and neck recurrence is so hard to treat a second time. I have to remind myself this is why I am opting for the adjuvant radiotherapy. But no matter how much I tell myself it’s the right thing to do, to increase my chance of long-term survival by making sure we ‘mop up’ any microscopic cancer cells that may still be lurking in my throat, I still worry that I’m making the wrong decision and that it would be better to ‘watch and wait’. Because radiotherapy brings with it its own risk of causing another primary cancer (usually a sarcoma) around 15 years after treatment, not to mention all of the awful side effects, again, more pronounced for head and neck cancer because of the location of the x-rays.

As I mentioned, most of the side effects are common, so it is highly likely I will experience some or all of them. Most people do. I’ve been told to try to gain some weight before treatment starts so that I have more to lose when it gets to the point that I can’t eat - creating a buffer so to speak. It’s not often in life you are told to gain weight so I should be happy about it, but like any of the positives of cancer, it doesn’t really feel like a positive. I feel more like a turkey being fattened up for Christmas or a goose ready to be made into Foie Gras.

My mouth is already very dry after surgery, and something has happened to my taste, in that everything is slightly less tasty than it was before surgery. This isn’t a great starting point as radiotherapy will exacerbate both issues, but my surgeon isn’t concerned and told me to suck sherbets lemons! How very scientific!

With one week to go, and to make the absolute most of it, I am flying out to Portugal with the girls for 5 days of sunshine, good food and wine. I had booked this trip back in March, before my diagnosis, and I didn’t think we would be able to go given my treatment schedule (I was meant to start on 29^th but that turned out to be a bank holiday so it was moved to 31^st), so I feel very fortunate to have the opportunity to go after all. Maybe somewhere there is a guardian angel looking down on me - and realising quite how bad the past 1.5 years have been.

The Portugal trip feels like the Last Supper all over again (see pre-surgery post), and I have an ominous feeling in the back of my mind about what’s to come very soon, but I am trying my best to push it aside so I can enjoy this time. I will of course be taking sherbet lemons on the flight!

The Mask (no, not Jim Carrey)

Today was the inaugural mask fitting ceremony. Okay let’s face it (possible pun there - sorry) there was no ceremony. It was just a standard Monday afternoon, after an exhausting but brilliant weekend of 12th birthday celebrations and a sleepover of 8 girls in the loft, spent lying on a hard metal table with a cannula in my arm to inject contrast dye, which makes you feel like you are simultaneously wetting yourself and eating metal, having a sheet of melted mesh thermoplastic placed over my head and shoulders and moulded to my shape then bolted to the table with 8 big black bolts until the mesh has set solidly, then popped into a CT scanner for a few rays and then sent on my merry way - see you in 3 weeks darling! 

I have to wear a mask for each of my 30 radiotherapy sessions. That’s every day, Mon-Fri, for 6 weeks. And it’s a 2.5 hour round trip each day in the car. The purpose of the mask is to make sure I stay completely still and can’t move. Once moulded, it sets into a very hard plastic. As you can imagine, it is not pleasant - it’s very tight fitting so I can’t move at all (I know, that’s the idea, but still not nice) although I do have a hole for my eyes, nose and mouth, which I wasn’t expecting as most masks I’ve seen online don’t have this. I do feel fortunate in that regard. The mask has points on it to ensure the beams land in exactly the right place. I feel more reassured by this than I did by the arrow that was drawn on my neck with a felt tip pen right before surgery!

Being bolted to a cold metal table is unpleasant at best, terrifying at worst, and I have to try to train my mind not to think about it while I’m in the mask bolted to the metal table. It’s a bit like the tunnel of doom (otherwise known as an MRI), if you allow your mind to go to the place of fear, you will panic and it’s downhill from there, so you have to try to focus your mind. Easier said than done, but I have been practicing breathing exercises to get me through it so I’m hoping I can employ those when needed. So that’s the fitting done. I now have 3 weeks to try to enjoy the rest of the summer. I’m hoping to eat a lot, sleep a lot and spend some lovely time with my little ladies. Oh and squeeze in a last trip to Portugal!