37. Phase 3 – radio gaga

OK so we gave up waiting for the axilla wound to heal (that’s still ongoing!) and this week I started the third and final phase of my treatment – radiotherapy.

Some people do this bit first, some people just do this bit and nothing else. But for me, it feels like a nice way to finish treatment, because it should be the easiest. That means I can start getting my life back to normal while I’m having treatment!

One month to go

A week before I start having my treatment, I’m invited to meet the Radiotherapist, Dr Russell. This feels a bit weird; she’s been involved in my treatment for the past eight months and knows more about me than I do! At each stage of treatment, where a decision has been made, the team looking after me (Oncologist, Surgeon, Pathologist and Radiotherapist) have planned things collaboratively, to ensure that whatever treatment I’m given is the best thing for me at the time, in the context of what’s still to come and what’s gone before. This sounds logical, but it’s still reassuring to know that they’re all working together to get me fixed.

So I meet Dr Russell and she explains what’s going to happen during my treatment. Today I’ll be ‘prepared’ then my treatment will start about a week later. Treatment will be 21 sessions, once a day, Monday-Friday. In my usual way, I ask plenty of questions – can I work? Yes. Can I train? Yes, that’s actually recommended as it’ll give you more energy, just go easy! Cool! So what are the side effects? Tiredness, itchy skin, sensitivity, oh and a very small chance of heart failure… WHAT?! It turns out that, because my tumour was in my left boob and my heart sits directly behind it, they need to make sure they don’t zap my heart! But they’re not too worried; apparently, breathing in fills my lungs and pushes my heart back away from the area being zapped – simple! So as long as I can hold my breath for 40 seconds I’m fine! Erm, OK, if you say so…!

Dr Russell reassures me that this really is nothing to worry about, and I’m sent off to be ‘prepared’.

Boob art

Whenever I’ve mentioned radiotherapy to anyone who’s been through it, they all seem to ask if I’ve had my tattoos yet? Surely they’re not serious? Oh yes, they are! The ‘preparation’ involves a quick CT scan, then letting the nurses loose on my chest with felt tip pens, ink and a tattoo needle!

First up, they do a CT scan to get a detailed picture of the inside of my boob. Next, they lay me down on the radiotherapy machine, and line me up so that the lasers will zap me in exactly the right place. While I’m on the machine, it shines green guidelines onto me (like when you use a laser to point at a presentation screen). The nurses then draw on my chest with felt tip pens to mark where the laser grid lines are, so that when I come back next week, they can line me up in exactly the same position. Makes sense, but what if the felt tip rubs off in the shower? That’s where the tattoos come in! Where the grid lines cross, they tattoo tiny dots on my skin, so that I can always be lined up in the same place. They’re only tiny and look like freckles, but they will be permanent.

I actually find this all quite entertaining, especially when they give me a pen and ask me to keep my lines ‘topped-up’ until next week… How am I meant to do that? I can’t see half the lines, let alone draw them on myself! Luckily for me, I’m heading to London for the weekend… Once again, enter Nurse Kari…

So Kari, what did you do at the weekend? Ah not much, just drew all over my mate’s boobs in felt tip pen… as you do… We had a few attempts at it, because she kept giggling and I was ticklish! I was half expecting to see a Banksy or some crude graffiti when I looked in the mirror, but luckily Kari kept her artistic flair at bay and I was back to looking like a walking Ordnance Survey map.

Treatment begins…

Many people have asked why I chose to have treatment in the Netherlands rather than back home in the UK. Well, everyone who’s been over to help me in the past eight months has seen the facilities over here and experienced the efficiency and friendliness of the team looking after me. Clearly, I’ve never experienced cancer treatment in the UK, but based on the facilities alone, there’s just no comparison.

Unlike chemotherapy and surgery (which were both at the OLVG hospital in east Amsterdam), radiotherapy is at the Dutch Cancer Institute (AVL) in the west. I was impressed by the OLVG, as it never felt much like a hospital, and the people were all super friendly. Well the AVL is much the same.

AVL (Antoni van Leeuwenhoek) is a hospital in the Netherlands, which specializes in the diagnosis and treatment of cancer. It feels more like a shopping mall than a hospital, and the layout and facilities are just first class. The atmosphere is laid back, there’s a library, an internet café, a museum, and they even sell beer and wine in the cafeteria! They also have people walking around with trolleys offering tea and coffee to whoever is sitting around – patients, friends or family; if you want a drink, they just hand it out. It all feels very relaxed.

My own private retreat

So on Tuesday, I arrived for the first of my 21 sessions. By this point, I was relaxed and had a good idea of where I was going, and what to expect:

  • Although there are multiple radiation machines, you’ll always use the same one; to ensure you are zapped in the same spot that was identified on the CT scan and where the preparation markings were made. Mine is A2.
  • There’s no need to register at reception every time you come in, just scan your patient card under the bar code scanner by the door (so the nurses know you’ve arrived), then sit in the waiting area outside your machine room and they’ll call you in when they’re ready for you.
  • You stay clothed from the waist down but wear a loose shirt or blouse, so you can wander through to the machine ‘covered-up’ then just slip that off before you hop onto the machine (basically, don’t wear a dress or jumpsuit – noted!)

The radiation area is one big room, with diving walls coming in from each side to divide it into an S shape. At the top is the area where the nurses sit, then there’s a corridor and on the other side is the large area where the radiation machine is. There are cameras, speakers and microphones all around the machine, so the nurses can see and hear me from their area, and can talk to me and operate the machine without being in direct contact with the radiation themselves. It all sounds very technical, and it probably is! But it doesn’t feel it when you’re in there.

On the contrary, it actually feels more like a spa! Apart from the nurses’ area with their tv screens, the rest of the area is decorated in a really modern and relaxing way – there are uplighters on the floor, script writing on the walls, images of beaches and forests, mood lighting, and sound effects like birds tweeting, waves, branches blowing in the breeze etc. And as you come in, the patients are able to select the theme for all the lighting and sound (the themes are named after locations; so far I’ve tried Australia, South America and the Seychelles?!)

I really like all this; not because it’s cool or spiritual, but because they’ve made a conscious effort to make patients feel relaxed, give them something to do, a choice they can make, rather than just feel like this is all being done to them. It’s a really nice touch and the whole experience feels, almost enjoyable?!

You expect me to talk?

So my visions of lying on a bed with lasers zapping me – as per James Bond and Goldfinger – weren’t actually that far off! I’m lying on my back with my hands above my head. There’s a rest beneath my knees (for comfort) and rests above my head to support my arms and wrists. The equipment then moves around the bed and ‘zaps’ me from specific angles.

In my case, there are four zaps – one from behind my left side (coming at my boob from under my left arm), one from directly above, and two from above my right boob (coming at it diagonally from above). Each zap lasts between 10 and 30 seconds, during which time I hold my breath.

The nurses set me up on the bed, line me up so my grid lines match up with the lasers on the machine, then they toddle off to their area around the corner and talk to me over the tanoy. They talk to me every step of the way, so I always know what’s going on:

  • “OK we’re going to start, are you ready?”
  • “Yep!”
  • “OK here we go, ready for the first one; breath in, breathe out, breathe in, breathe out, now breathe in and hold your breath…”
  • I then take a deep breath and count in my head, until I get to about 25 and they say “…5,4,3,2,1, and breath out. OK?”
  • Yep!”
  • “Good, OK next one coming up…”
  • The machine then moves into the second position and they talk to me again
  • “OK second one coming up; you ready?”
  • “Yep, hit me!”
  • “OK here we go, second time; breath in, breathe out, breathe in, breathe out, now breathe in and hold your breath…”

After the four zaps are done, that’s it. The machine slides back and the nurses come back and help me up. I get dressed and they smile and say “see you tomorrow!”

It all sounds too easy…

Given the complexity of the equipment, the seriousness of the task in hand, and the journey I’ve been on to get here, it seems flippant to say this, but it’s effortless! I know I’m only four treatments in, and have another 17 to go, but so far all I’ve felt is a little bit tired. And it’s not tiredness like I felt in chemo (that was more like fatigue, energyless achiness) – this is more like I could just hit the sack and sleep a bit more.

But it’s not stopping me doing anything. On Tuesday, I went to work for ive hours before treatment; on Wednesday, I went to the gym for 30 minutes after treatment; on Thursday, I went to work for eight hours after treatment; and on Friday I went to work for six hours before treatment… So I’m working part-time, I’m doing a little bit in the gym, and I’m sleeping like a baby the rest of the time!

OK so it’s not all rosy – my limbs and joints still seize up if I sit still for more than ten minutes, but I’m hoping that will go in time, especially as I start to rebuild my strength and flexibility. My shoulders are painful (from sleeping in odd positions after surgery, and overcompensating by using my right side for everything while my left side was healing). And my feet still ache like hell from the damage of the TC chemo (they’ve said this may improve but may stay long-term). But I’m going to ask about physio to help all this and hopefully I’ll get most of this back to normal in time.

In the meantime, today and tomorrow are rest days, before treatment starts again on Monday with session 5…


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