Month: May 2017

Why cry when you can laugh?

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I know some people think I’m odd and weird and crazy, for being all smiley for such a sh*tty diagnosis.

Truth is – how I really feel doesn’t really matter, does it? I have cancer. There’s no easy way to say it. I had a gigantic tumour in my tit. It was 8.5 * 7.5 cm – in comparison, the International Tennis Federation (ITF) defines the official diameter (of a tennis ball) as 6.54–6.86 cm (2.57–2.70 inches). It’s not something I can throw away or get rid of. I don’t have a choice in the matter.

I was lucky. My tumour is new. It hasn’t spread and is responding extremely well to treatment. But it’s a sh*tty kind of cancer, I have surgery and years of medication ahead of me, and I have no guarantees that I won’t get metastatic cancer in a year or ten.

I also have muscular dystrophy and osteoarthritis in my lower back. This means that I will never have a functioning body.

It would be a lot easier for me to just give up.

I’m not a quitter. I’m a survivor. My way of surviving this is to laugh and smile and be happy – cos if I start crying, I wouldn’t have the strength to stop. Besides, that’s not going to help anyone, least of all me. I refuse to feel sorry for myself. I refuse to be a sulking, complaining b*tch (apart from when I haven’t slept properly cos of hot flashes during the night).

My choice – to be still smiling.

 

I am Samson(a)!

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Not because I have long hair (anymore), but because my pink hair makes me invincible. Dyeing your hair bright pink and making it as noticeable as possible commits.

When I walk down the street, people stare. What they see is a fat, 40-ish woman with bright pink hair looking like she’s trying to be a good luck troll. And because a lot of people lack manners, they stare, as if I’m some sort of one-woman freak show.

Which I am (in a way). What they don’t know, is that their staring just makes me lift my chin that much higher, and straighten my back just a touch more, and if I’m really lucky (for instance, if I’m sitting on a train) someone will phone me and I can tell the person on the other end how my check-up with the oncologist went and about how there are so many rude people staring at me and how goddamn stupid I find them.

That usually makes them turn their head away in shame, or they’ll put on their music, cos people love hearing about other people – just not other people’s cancer.

Sometimes, pink hair initiates conversation with people who are curious (I don’t think for one second that anyone thinks I’m a punk or crazy). And I’ll tell them that this is my breast cancer hair, and we skip the awkward “OHMYGOD I didn’t know, I am so sorry” cos pink hair – you’re not looking for apologies, you’re open to talking about it.

In the past nine weeks, since I first went pink, I’ve had quite a few conversations with strangers – not that I particularly enjoy talking with strangers (I am an introvert, after all) – and they’ve been good conversations. I’ve told them my story, we’ve talked about signs and the importance of knowing your what your own breasts look like by default. We’ve talked about treatment and discovery, and I’ve told them how most tumours can go unnoticed for a year or two – in spite of mammography – because they usually grow so slowly.

And stnading straight and walking tall is good for the body, so I figure my physical therapist will be pleased, too.

And if just one woman manages to spot a tumour early, then it’ll be worth all the glares and stares and rude whispers…

Tumour is now off the charts!

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Quite literally, in fact. I had my third check-up with Dr. R last Thursday. I knew what she was going to tell me, so I think I kinda stole her thunder. here she was, all set to tell me the great news from the MRI (the tumour has collapsed) and I could counter with “you can no longer feel it”.

The tumour isn’t gone, it’s just collapsed. I’ll still be popping pills and having monthly injections until August, there will be surgery in September and radiation to follow, and the surgery will be invasive cos there are a lot of cancerous cells – but the results are exceptional.

Which means that she can no longer check the size of the tumour with her ruler, ie no more charting of physical size at Doc’s office.

 

FightHPV – et mobilspill for alle!

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“Kan et spill bidra til at færre får livmorhalskreft? Bli med på å finne det ut!

Prøv vårt nye mobilspill, og delta i forskningsprosjekt om screening mot livmorhalskreft – og del gjerne denne videoen med venner!

Kreftregisteret har utviklet mobilspillet FightHPV for å øke bevissthet og kunnskap om HPV-smitte og screening.”

Last ned spillet gratis her:
Android: https://play.google.com/store/apps/details…
iOS: https://itunes.apple.com/us/app/fight-hpv/id1091559571

Kreftsjekken har også laget en video om spillet.

Hver dag får en norsk kvinne livmorhalskreft – ikke vær den kvinnen! <3

When cancer isn’t the worst possible diagnosis

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I had my second appointment with my new physical therapist (LB) yesterday. The first time I went to see her, she asked about my medical records. When I started telling her about all the tests I’ve had over the years, and all the different specialists I’ve been to see, and the mountains of paperwork now acquired, she agreed that it was easier that I just tell her. And as I have a gazillion test results and know quite well what they have (and haven’t found), she could start on the physical examination yesterday.

Good news: I’m still really flexible (she was quite impressed). She even laughed when I made my default joke – that I would be more flexible if all the stupid fat wasn’t in the way – and she agrees that the f*ckwit endocrinologist I went to who claimed that gaining 40 kg in 5 years is normal was an *sshole. She’s also rather impressed that my muscles are as pliable as they are and agrees that if they hadn’t been, I would probably have been in a lot more pain.

Ever since my backpain started, I’ve tested quite a lot of treatments. I’ve had physical therapy (of various sorts), I’ve done belly-dancing, yoga, pilates, hot water exercise, walked for miles in the forest, worked out in the gym. I’ve tried easy workouts and brutal ones. I’ve tried ignoring the pain and working through it. I’ve tested all sorts of drugs – anti-inflammatory (ketaprofen, celecoxib, diclofenac with sodium and potassium, naproxen), analgetics (paracetamol, phenazone, ibruprofen) and opiates (codeine).

I’m open for treatment suggestions if anyone knows of anything I haven’t yet tried.

I had a great neurologist who (after a dozen various tests) ended up with “unspecified myalgia” as official diagnosis, “There seems to be a chronic inflammation in your lumbar region but I have no idea what causes it nor how to treat it” as the unofficial. There were a lot of test results but none of them gave a clear diagnosis. My mitochondria have stopped working properly, I have fatty deposits where there aren’t supposed to be any, and I have muscular dystrophy.

Six years on, I’ve still not found any treatment that alleviates my back pain. I can go for a walk in the forest but that’s it. If I do anything during this walk (ie pick mushrooms or berries, get on my knees to take macro shots of interesting plants or insects) it triggers the inflammation. If I take any drugs, best case there’s no effect, worst case my pain flares up.

There have been a number of signs that my body is worn out from heavy physical work over many years. Torn rotator cuff, chronic latent shin splints, jumper’s knee and tendonitis in both arms, and this sudden switch from fully functioning muscles to mitochondrial disorders and dystrophy. The additional inflammations and uncharacteristic pain when I had the double neck prolapse last year. And yes, the bod stopped functioning overnight, when one day of visiting a number of galleries and exhibitions in London left me in so much pain I was unable to walk after sitting down.

Back to LB. After examining me thoroughly, she gave me the news no-one really wants. The most probable cause of my back pain is that my lumbar column is worn out. The good(-ish) news is that I now have a couple of pretty clear diagnoses to hunt – facet syndrome/facet joint problems, lumbar spine osteoarthritis, sacroiliac joint dysfunction, lumbar spinal stenosis – the bad news is that regardless of diagnosis, my back is f*cked. There are no good treatment options. Between skeletal and muscular issues, I will never have a functioning body again.

I also explained that my neck/shoulder/headache issues aren’t something she needs worry about. I explained how the main problem is that my neck stiffens if I don’t get a good night’s sleep, which causes pain travelling down into my shoulders and up into my head. She seems to agree with this and we decided that unless I get another prolapse we won’t bother too much. I already have the tools and know what to (not) do.

Our goal has therefore become finding tools for me to prevent triggering lower back pain flares and/or manage to deal with them (at the moment, my only option when they flare up is to lie down). I’ll have to make an appointment with my GP so we can start applying for full disability.