1 SEPTEMBER 2013
I talked about how cancer made my hair blue at BarCamp Berkshire in June 2013.
I was a dark baby. I’m half Indian, half Italian. I look like my dad.
I had thick dark hair.
I had a lot of hair in general. And a big nose. I looked in the mirror, despaired, and prayed.
To make matters worse, I started to get white hair.
I did a Psychology degree. I wanted to be able to read people’s minds so that I could finally understand the world.
I learned far more interesting things. Away from home, I found my identity. I also took a programming option and learnt BASIC.
Girls were supposed to wear a plain dark skirt and a white blouse at graduation. I went out and bought a turquoise dress instead.
Taken when back-combing was all the rage. (A university friend found me on Facebook last year and sent me this photo.)
Now on a Computing MSc. I bleached a third of my plait and dyed it pink.
I then went on to do a PhD in Applied Computing to Psychology. This was before the web (as in HTTP and browsers). I used e-mail and Usenet, a distributed bulletin board system with over 30 million users. One day I posted a question about language.
Seven guys replied. Since I was looking for The One, I replied to them all. Only one continued writing. These are the photos I later sent him.
He took this photo at work for me. He worked at a company writing bespoke software for handheld programmable (HP) calculators.
We mailed platonically for three months before meeting in person.
The day before, my supervisors told me they didn’t think I would complete my PhD and that I would leave a year early (I’d spent all the time mailing a stranger).
I met Frank on a Thursday. On the Sunday, we agreed to move in with each after.
Back at uni, I was annoyed by messages going around Usenet asking for everyone to send them a dollar. I posted a request for jam doughnuts instead. Someone sent me one. I ate it.
Isn’t he a sweetie? This is the year I discovered IRC, Internet Relay Chat. My chat name was Poot.
We got Internet access with Demon, one of the first UK ISPs.
I hung out in the demon.local Usenet group and organised monthly net meets in London. The next photo was taken after one of the meets.
Around this time, I was interviewed by BBC and Channel 4 about meeting people online.
Frank and I got married on 02-02-02. We didn’t tell anyone beforehand. The only thing we bought were our custom rings.
This was me at my heaviest. I was over 15 stone.
And this photo is why I chose “Queen of the Universe” as my job title when Google asked me for it. At the Registry Office, they said we could pose for photos with a fancy leather book and a quill – this is my reaction.
In the wedding announcement, I captioned this photo: Oops! Paola accidentally signs as “Queen of the Universe”. Oh well.
In 2006 I joined Second Life as Poot Dibou. Second Life is a virtual world.
Besides the land, everything is made by the residents using a simple CAD system and a scripting language – LSL (Linden Scripting Language).
On day two I made a one-prim skirt (one-object), applied an in-game water texture and added a one-line rotation script. I also made a solar system to rotate around my avatar’s head.
I made it large in a sandbox and then shrank it to size to wear.
This is a photo of Poot playing with doughnuts in a sandbox.
In Second Life, you can give objects you create the attribute of Phantom. Phantom makes objects non-solid – that means they can occupy the same space as other objects. I used Phantom to make this pile of doughnuts.
This is what happens when you turn off the Phantom attribute to linked objects in one click. Each object jiggles to find its own space, resulting in an explosion, giant doughnuts bouncing across the sandbox.
If you are wondering why I made a big pile of doughnuts, it was to photograph them at this barn I found.
To create this image for our 20th anniversary of meeting online.
Based on American Gothic.
After a year on Second Life, I became besotted with this combination of grey skin and white hair.
I bought both.
Interesting, I didn’t change my avatar’s shape, just her skin and hair. And yet she looks completely different.
Skins in Second Life are amazing. There are templates that people use to design them. This one cost me about L$1000 – that’s $4 in real money.
This is one of the other incarnations of Poot.
She’s short, just 4’8″. This is one of her pals. She wears Doc Martens with her kimono. When I could afford them, I bought some for myself.
Did I say skins were amazing in Second Life? Here’s before and after a skin upgrade. Can you see the vein under the skin on this one?
Meanwhile, I’m short and round too.
Back in Second Life, these are the different looks I’d created for Poot. This shape came about using the Randomise feature.
I took this screenshot recently to show the appearance editing dialogs. You can pretty much customise everything to do with your face and shape.
People also make rather creative attachments for their avatar. (I just spotted Poot!)
Once day I decided to shop for new hair. I tried a lot of demo hair first.
I found a hair style I liked and tinted it blue.
Meanwhile, in 2008 I started food-diarying, hoping to diet by embarrassment.
During 2008, I lost 5 stone (70 lbs, 31.8 kg) by keeping under 1,200 calories a day. I regained half after I stopped counting calories.
I tried to create a version of Poot that looked like me.
I also went back to my original avatar shape with green-tinted hair and a t-shirt made with one of my digital images.
However, this look from 2009 is how Poot looks most of the time. She’s so gorgeous. Sometimes I just log on so that I can look at her.
I decided that when I reached my goal weight (I never did), I would reward myself by dyeing my hair in greens, like Poot.
Three and a half years ago, I knowingly had cancer for five weeks. That was the time between the diagnosis of the 3cm lump I’d found in my breast to two weeks after it was removed.
If breast cancer has spread, it’ll be by the lymph system. Simply, this is a series of ducts and nodes. The nodes are sites of warfare. If breast cancer has spread, the lymph nodes will have lost their battle and will be infected with cancer.
There are about 30 lymph nodes under each armpit. Some years ago, they would remove ALL the lymph nodes as a precaution. However, this causes various lifelong problems.
Nowadays they do a Sentinel Node Biopsy. This is where they look for – and remove – the first lymph node that would have been reached from the breast. If that is clear, then the nodes further down will also be clear.
But how do they know which is the sentinel node? Well, on the morning of my lumpectomy, I had a radioactive injection. Under anaesthetic, a blue dye was injected into my nipple. The dye follows the lymph system and colours the nodes.
The radiation gives the surgeon a rough entry point. They then remove the sentinel nodes based on the dye.
My pee was bright cyan after surgery, It was awesome!
And I think my breast must have fought back because there were blue splashes on my arm.
I was in and out of hospital in an afternoon! And I didn’t have any pain afterwards.
They remove an area enclosing the lump to make sure that they got the whole lump. The healthy border is referred to as the margins.
Two weeks after surgery, I was told that my margins were clear and that the three lymph nodes they removed were also clear. Yay!
There’s a belt and braces attitude to treatment because, even though my surgeon said I didn’t have cancer any more, there’s still a minuscule chance that they missed a bit.
So I had six rounds of chemotherapy, 18 rounds of radiotherapy and I’m on hormone therapy for five years. If, like me, you only have a minor brush with cancer, the cancer itself doesn’t make you feel ill, the treatment does.
Hormone therapy is the opposite of Hormone Replacement Therapy. Whereas HRT ADDS female hormones, hormone therapy REMOVES them. That’s because, the lab tests removed tumours for three additional things: whether they are responsive to progesterone, oestrogen or human growth factor hormone.
Being responsive means that a tumour grows faster in their presence. If a tumour was responsive to progesterone and oestrogen, one can then add hormone therapy to the treatment. If the tumour is responsive to human growth factor hormone, it’s an aggressive tumour. If the tumour tests negative for all three, it’s called Triple Negative and there are no extra treatment options available.
My tumour turned out to have the best combination with regard to treatment.
(However, the hormone therapy I am on – Tamoxifen – strengthens menopause and slows down weight loss. I will never be able to take HRT. I started calorie-counting again but I only lose weight at a third of the rate I did in 2008.)
I decided to take advantage of losing my hair from chemo and have an adventure. A seller on eBay was selling cosplay wigs – just $18 including shipping from Hong Kong! I posted my shortlist to my blog, where I was keeping friends informed of my progress and treatment.
I went for the blue one.
I also bought a black one but it wasn’t “me” and I gave it away.
Hair doesn’t really fall out with chemo. Instead, it comes away in your fingers when you touch it. A few long hairs persisted during chemo and were there when the rest grew back. This is between my second and third chemo.
Sessions are three weeks apart because chemo blooters your immune system and it takes that long to recover. I felt nauseous the first week of every three but felt fine afterwards and was out and about.
My hair started growing back three months after I started chemo. White and REALLY REALLY soft.
Five months after chemo started, my hair was looking AWESOME.
Seven months, it was looking frumpy. At Christmas (nearly a year after I first found the lump), a 20something young woman offered me her seat on a bus. I asked her what it was about me that made her offer the seat. She said “your hair”.
I bought a navy blue dye, not realising it was permanent. And I still looked frumpy.
Tony & Guy made me look awesome again. This was my profile pic for a while.
But it was an expensive hair cut to maintain and I felt naked without my sticky-up hair. It took about six months for the colour to grow out, mostly because my hair grew back slowly after chemo.
The navy eventually grew out enough that I could make my hair a colour that I love. Just like Poot Dibou can.
This is how strong the colour can get after I dye my hair. (I use a temporary dye and refresh it every 3 weeks.)
Finally, the word “brave” has often been used to describe people with cancer. However, most of us don’t like it. “Brave” is for when you choose the difficult option. Instead, we endure treatment and hope that cancer won’t kill us. For me, I think I am “brave” to dye my white hair turquoise – my favourite colour – rather than a “normal” colour.
I hope you enjoyed my story.