Too big to flail

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This is my boob mould. I went in today for my measurements to be done and for pen marks to be drawn on. What I got was a hot flat roll of plastic lattice pressed into my boobs and cooled with a fan until it perfectly fit my body. Three technicians were needed to complete the task including a young physicist who, according to his coworkers, is a notorious pen thief. One technician has assured me I can keep the mould after and had all manner of ideas for repurposing. Hanging baskets, corset, wall decoration..

The reason for this surreal morning is that I am too enormously gifted in the boob department to get radiotherapy treatment without it. I will have to wear this every time to keep things where they should be. Without it, my boobs flop too far down. I can get blistering where the boob touches the chest and it will slightly lift things away from each other.

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Added to the other worldly feeling of today was this bus-like electronic timetable in the waiting room. Hooray, the NHS are ON TIME! I must say it’s reassuring to me that they are so anal. We don’t really want a sloppy work culture in the radiation department.

The plus side to the boob mould is that they marked it up with dots that would normally be on my skin. So no more talk of tattooes and sharpie pens. The Universe is smiling on me today. I start treatment on October 14th and it will run for three weeks, every day Monday-Friday. Then an extra bit of boosters because I’m young and my cancer is aggressive. The wait is so long because I need to heal as much as possible before they blast me again.

Now I get to be normal for a few weeks and plan my alternative use for boob mouldage. Ideas on a postcard..or in the comments.

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.

CLEAR

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“It’s good news,” the doctor said before I even sat down. No sign of cancer in the tissue they took out in the second surgery. None. Not just a good margin but no cancerous cells at all.

I asked him for a prognosis and he far-too jovially inputted my info the computer programme. It was called Predict, not Cake or Death sadly. Click, click, click.. like some morbid multiple choice quiz. Up the results pop and seems if I had been born in Victorian times when all they did was cut out the lump, I would have been fooked. 33% five year survival rate but with the extras, chemo etc, that jumps up to 74%.

Although it’s all qualified by the data being generated with not all variables considered. So it’s not a guarantee or a death sentence. I was more just curious to have all the knowledge rather than count my life chances in percentage points. Life is more complex than that.

Next step is radiotherapy as an insurance policy. I have my appointment on Tuesday and then it will probably happen in the next 6 weeks. The exciting part is I’m healing every day and that will continue and life can begin again. Plans can be made. First up, vegan tapas tonight!

Thank you my bosomers for the support this year. It’s been quite the journey. I feel so close to all of you and we will be in this life, in joy and sorrow until the end. You are the very best humans and I love you all.

The eve of BIG NEWS

Tomorrow is the big day. The sliding doors moment when I get my pathology report from the last surgery. This is the most important appointment since I got my diagnosis in January. It’s the moment when I get the ‘ALL CLEAR’, albeit a qualified one. I’ll never be completely free of this disease. I’ll glimpse it occasionally out of the corner of my eye, like an inept detective following me for the rest of my days. But they will be able to say that as far as they can tell, it’s gone. Radiotherapy is just the clean up crew then, an insurance policy.

Another thing that will happen is I’ll get my prognosis. I’m in two minds about whether I want this as there’s all sorts of issues around determining it. The doctors basically put all your results into a computer programme that have names like Predict and Adjuvant! Online. I’m feeling like those names are a wee bit too glib for what they do. I mean if you’re gonna go glib, then name the thing Cake or Death.

Also the data they base these predictions on are at least five years old, if not more. Treatments have improved, care has gotten better. Plus the samples are dominated by older women because it’s much rarer for younger women to get breast cancer in the first place. And ultimately we’re all individuals. But perhaps I’m being picky about this in case it’s not what I want to hear. Boiling down my life chances into three rigid options (excellent, good, poor) strips me of all the complexity my existence is made up of.

Lastly and most excitingly, I will get a pathology report while I’m still ALIVE! Having been completely obsessed with Quincy as a young ‘un and as a result wanting to be a medical examiner for at least 3 minutes when I was eight years old, this is pretty cool stuff. I do feel I missed my calling as a social justice hero who cuts up dead bodies.

So my friends, by lunch time tomorrow I should know if I get to move on or if there’s more surgery on the horizon. If I do get to go forward, then for how long. All big, dramatic life thingies. In fact, it’s all a bit too serious for a sunny day. I’m off to the beach.. and I’ll take the cake please.