Ion Storm

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I needed some turbulent waves this afternoon and my faithful friend, the sea, provided. Dodging the pebbles thrown into my path on one side and falling chalk on the other, I was yelping in thrilled delight before long. Thus the remnants of my frustrating morning visit to the oncologist were purged.

I had a different oncologist than usual and this appointment was to discuss the upcoming radiotherapy. First he went over my pathology report and some info came to light. Apparently there are three places where lymph nodes are found under the arm. The surgeon took all of them but only the ones at the lowest position contained cancer. A good sign he said. A sign that the cancer cells only made it to the first bodily hurdle and got stuck.

Next up he ran through the basics of radiotherapy. To be honest it was very basic and only now I’ve done some Googling and dug deep into my A level science, I feel I get it. It works in the same way as chemo did in that it damages everything and relies on the cancer cells being a bit rubbish at repairing themselves. Healthy cells are better at bouncing back.

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The technician will basically aim a giant ray gun at me and shoot my boob with X-rays, 50s sci-fi styley. The X-rays are super dooper high energy ionised particles. Don’t panic about the word ion. It just means the particles have an more or less electrons than protons. Normally they were would be the same amount but when they differ the particle gets very ready to party with other atoms. So when the particles meet cancer DNA it nicks or gives electrons and screws up the DNA. The cell then dies.

Now this is also what happens when the X-ray meets healthy cells although they are better at repairing themselves. But there is a chance that the damage done to the cell can mean a mutation and a second cancer. The cure could become the disease. Enter the stats. The risk of a second cancer is 0.5% compared to 33% chance of a reoccurrence of the original cancer if I don’t get the radiotherapy.

The X-rays are intense though. I’ll get a dose that is equivalent to what you get from just hanging out on the planet for about 8500 years. A normal chest X-ray is about 10 days of background radiation. It’s a lot. And there will be repercussions. I’ll get tired, really tired. Now I have many words for different kinds of fatigue. I’ll gain a new one in the coming weeks.. radio-poopery? I wonder if the high energy particles steal energy from my body on its way through.

Anyway, that wasn’t the frustrating part. When I go to be prepared for the therapy, the radiographer will permanently tattoo two pinhead-sized black marks on my chest. This is to make sure the machine is lined up precisely every time so the same area gets blasted. But they’re permanent. I had heard from another breast cancer patient that you could request they use a marker pen instead and avoid the tattooes. So I let the oncologist know that’s what I wanted. He was pretty surprised, resistant and unhelpful. I left feeling I would have to fight for this and belittled by his lack of understanding.

After being at home for an hour the phone rang and it was the hospital wanting to make the appointment for the tattooing. I asked to speak to the radiographer and once I told him what i wanted he immediately said these words: “I totally understand.” Being acknowledged and understood as having valid feelings is so crucial. It’s a tried and tested technique in counselling and a powerful thing in a situation where you feel a lack of control. I haven’t had many options in the last year. I have accepted that and submitted to the trust and care of strangers. This time I could wrest back a tiny decision on an even tinier impact on my body.

Perhaps the oncologist didn’t get this. He was bemused that I was acting so irrationally on such a minor issue. He even tried to scare me into compliance with the small possibility that I might need more radiotherapy in the future and they would need exact information for previous treatment. Luckily the radiographer had a more emapathic approach and put his own needs second to mine. He added a disclaimer that if I needed future treatment the beam might be a bit off and mean a double dose for a centimetre of tissue. A risk I’m willing to take. But the risk is mine, the decision mine. He was much more concerned that I was as relaxed as I could be for the treatment. Being stressed and tense would have more impact on his precise measurements and therefore success of the therapy than some imagined future issues.

Thankfully the situation has transformed from being in conflict to now feeling confident and happy with my caregivers. My stormy morning has turned as calm as the cafe I now sit in.

7 thoughts on “Ion Storm

  1. Karen

    Wow, Heidi, I’m glad it felt alright in the end. What a difference a few words can make – just someone saying they understand is such a momentous thing. The radiotherapy does sound like an amazing therapy. I know it’s a bit of a blunt instrument but it does seem to make a big difference. I imagine everyone reacts differently to the treatment. I hope you don’t have to find too many new words for ‘tired/exhausted’! Sending you love xxxxxxxx (your sea photo is amazing by the way)

  2. Paula

    It’s incredible how hard it is to let doctors know what you actually want and need.
    Good thing you spoke up!

    And, as I only read this post after reading the previous one. I already know you’re getting a mold!!!!

  3. Lisa

    Oh, one other thing. The radiation oncologist who treated me talked about side effects for short course vs long course radiation therapy. He told me that those having the long course frequently had greater side effects than those with the short course. I know you’re concerned about fatigue from radiation, and perhaps the doses you’ll receive will be greater than what I had. But compared to how I felt during chemo, radiation was easier. I was burned, yes (use those Miaderm and Aquaphore lotions!), but fatigued, not much. Here’s hoping that that will be the same for you.

    Additionally, the radiation side effects won’t last long. My last radiation treatment was on August 27, and the discomfort lasted about 2 weeks after the final treatment. I have no doubt that you’ll sail through radiation!

  4. Linda

    Hello Heidi! Greetings from Mexico. Just to let you know I’m here and reading and cheering you on! It so happens that around the time you got the ‘All clear!’ (yeah!!!!) we found out that my father in law has cancer… Stomach, metastatized (?) to the lungs. They’ll give him some sort of chemo but I understand it’s more a question of seeing whether they can check its spread rather than expecting a reversal. But having read your blog over the summer I felt like I know something about what it’s all about, even though the cancers and your/his situations are obviously really different.
    Anyway – he’s in astonishingly good spirits and taking it calmly, but we’re trying to mentally prepare for the likely outcome. Sorry, I don’t mean to get you down, these are just general cancer-related musings! Enjoy having put the treatments and surgery behind you and your victory over the tattoo insistence, and yep, that wave photo is amazing! Love and warmth.

    1. Heidi

      Hi Linda my dearest. I’m so so sorry to hear about your father in law. Is he in Mexico too? Please send him my greetings and love. My goodness you have quite a journey in front of you and I’m sad you have to take it. Please feel you can private message me whenever if you need someone to listen. I think the carers get a worse deal sometimes. It can be frustrating and painful to watch someone you love suffer and feel helpless. But it sounds like you’re someone who’s aware of their reactions and emotions and that’s such a useful tool for coping with what’s coming. I’m sending all my love and solidarity to you all. xxxxx

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