Author: Siri

20% is a LOT

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One thing I’ve learnt is that a good oncologist won’t tell you anything that isn’t fact-based, but if you say to them “I’ve heard/read/experienced that XX results in YY” they will listen, and give advice based on your experience.

I’ve recently joined a couple of Norwegian breast cancer groups on facebook. They’re really good places to ask for advice, cos you get a gazillion different opinions but at least some of them make sense so you can cherry pick the ones you prefer. Yes, I’ll freely admit it, even a super-sceptic as myself might – on this one occasion – admit to being guilty of it!!!

As you may recall, I didn’t even leaf through the pamphlet about this study before signing it. I didn’t read about potential side effects until I started blogging. I didn’t really need to know, and besides, I believe that the mind can give you additional side effects – so not really interested in reading. But I’ve been curious about the whole operation setup. I know that there are a gazillion variants of breast cancer treatment, but it seemed that every person I spoke to had a different op story to tell. I was rather confused, and Doc wasn’t really giving me any straight answers either (not that she can, until they have that last MRI) so I sent out a question in one of the groups, and I got some really great answers!

For single-tumour, non-spread cancer, it seemed that the magic number was 27, not 42. With a BMI of 27 or less, surgeons have a bigger range of possibilities in regards to surgery, and can do a reconstruction *using your tummy fat*. 28 and over and no reconstruction for a few years, until they are certain that there is no spread and it’s safe to go in again. And although I have asked the doc about surgery several times, she has never mentioned this.

Now, what with my hormone troubles and shitty body, my BMI is up at 33. Reducing it to 27 means a weight loss of 20 kg/20% of my body weight in just under 3 months, in a body that refuses to part with a single ounce (apart from last year, when I dropped 10 kg between May and November yet increased one whole size in all clothes. Again.)

Sooooo…… I am removing carbs from my diet, and replacing them with salad and broccoli. No more freshly baked bread with melting butter, no more potatoes, no pasta or rice or sweet potatoes or biscuits and cheese … and most certainly no chocolates, crisps, cakes, biscuits or other yummy items.

No more subs at Subway (when I go to the hospital, I usually grab one at the train station cos they’re cheap and filling and feel healthier than burgers & hot dogs), no more sushi at Sea Sushi (maybe the best in Oslo?), no more noodles or tempura or any of that yummy stuff.

Just greens, some proteins and a little fat.

I’m trying to convince myself that this will be easy peasy and that I do not want to binge on this cheesecake.

I don’t. Honestly, I don’t. Not at all. Please make and eat for me and send me NOMNOMNOMs…

[the stormtroopers are part of Stéfan Le Dû’s project, Stormtroopers 365, which is pretty awesome!]

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.

 

A new diagnosis in an old body

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My body has been non-functioning for 6 1/2 years now. Still searching for a Norwegian Dr. House. However – the cancer is not to blame for my aches and pains. Even though the tumour is estrophile and I suspect that my hormonal imbalances are a part of my disabilities, the connection ends there.

I did not have cancer in October. I had ridiculously low levels of oestrogen last summer (before I started any kind of treatment, my levels had increased 12-fold…). When I detected the tumour, it was probably a week old. This is probably the reason that it suddenly grew very fast – both in size and density – and why it’s decreased in both just as rapidly.

Tomorrow I’m scheduled for a new MRI. I am rather excited because the tumour seems to have decreased to the same density as my tumour-free breast. So I either have tumours in both now, or we’re talking a truly amazing reaction to the treatment.

No worries – the probability of the former is near-zero.

But no – the cancer is not to blame for my aches and pains and when I’m done with the treatment, I’ll still have a crappy body.

Don’t just make a statement – be one!

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Even if you don’t know me personally, if you’re over 18, I bet you know at least one person who has (had) breast cancer. One in ten women will get it at some point (and a handful of men). This means that if you have 100 female friends on facebook, 10 of them will probably get breast cancer at some point. It’s the most common type of cancer in women (accounting for almost 25 %), is largely due to bad luck (or bad genes) rather than choice of living, and the treatment regime (in Norway at least) makes you eligible for sick leave for 12-24 months.

Of those 10 facebook friends of yours, I bet that one will tell the world, two will let their facebook friends know but write as little as possible, one might be an attention whore (OMG I have an appointment at the hospital tomorrow and I am really scared but please don’t ask me why), two will let you know after they’ve survived the treatments and are getting back to a semblance of normalcy, two won’t tell you at all and two will desperately try to hide the fact that they have (had) breast cancer.

Unfortunately, breast cancer is a bit like a boob job. It’s difficult to hide the hair loss that comes with traditional treatments (ie chemo) and most women get “cancer hair” after they’ve finished the treatments. In most cases the chemo leads to weight loss and a sad complexion. Wigs are a great substitute for hair loss, but in most cases – the wig itself is more obtrusive than really short hair.

When I first got the diagnosis, I decided to shave it all off before summer, get the scalp used to some sun. If I was going to lose it all I decided it was better to be the one making the decisions rather than wait for it all to fall off. I’d made a deal with a friend that she was to shave/cut it and make extensions of my hair – why waste it? – but as I realised that I wouldn’t be losing it, I needed a good reason to get rid of it all. After a week of waking up drenched in sweat and feeling that my hair was greasy and yucky from the night sweats, I had my reason.

I’ve done just about everything to my hair – had it short, long, permed, bleached, highlights, dreads, a mohawk, and just about every colour there is (even fluorescent and silver) – just never pink. And since pink is the breast cancer colour, there was no excuse not to go there.

The response has been quite interesting. People I know think it’s really awesome (or at least they pretend to). Strangers I strike up conversations with are inquisitive and when I explain, they think it is brilliant. Some jerks just stare rudely – I stare back – and if possible, I just say “This is my breast cancer hair, do you have a problem with it?” at which they look rather embarassed.

Apparently, 40-somethings aren’t supposed to have bright pink hair.

So for all the women (and men) out there who seem to be ashamed of having breast cancer – this one’s for you.

Oh. Colour is Directions Flamingo Pink. It fades rapidly even if you don’t wash it – so if you want to be bright and colourful for a special event, dye it the same day! And use gloves!

The side effects of side effects

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Yesterday, I had my second check-up after starting on my meds. I’m on my third Zoladex, have gobbled 57 Tamoxifen as well a numerous amount of Paracet, Imovane, Xylimelt, Dentipro and Xerodent. Side effects are seemingly stable and the tumour has not only decreased in size (it’s now 7 cm * 6,5 cm) but the loss in density has amazed even my oncologist.

The stronger the medication, the greater the risk of annoying side effects. I should be relieved that mine are as mild as they are. That being said, mine are pretty annoying, expensive and make my body even less co-operative than normal.

Hot flashes – boy, am I getting them, and mostly when I don’t need them. They tend to be worst when I’m sleeping and most nights I wake up at least once covered in sweat as if I’d just had a really bad nightmare. I’ve started taking the Tamoxifen at 11 am rather than 9 pm to see if that will help. I hope so. My grouchy back needs sleep to function (as well as it can) and these rapid wake-ups don’t do any good.

Worse than waking up in sweats is not being able to fall sleep. I can lie awake for hours, yawning till tears start running, dead tired, but I just can’t sleep. My onco was very clear from the start – take the pills you need to alleviate the side effects you experience – you don’t need more hassle than you already have! And I do occasionally have sleep problems, so I have Imovane to help me fall asleep.

The main problem with Imovane is that my sleep is not high in quality and I feel sluggish and off-beat the following day. So, I can choose between not enough sleep or crappy sleep – both giving me a really bad next day. An average “sleep disturbance cycle” for me is two- four nights of lying awake for 2-4 hours before falling asleep. In those cases, I only need one (in bad cases, two) nights with Imovane and I’m back to falling asleep rapidly. But this time – I’m now on my third week of sleep problems. I got a different prescription from my onco – Stilnoct –  hopfully they will do the job.

I’m used to having headaches from time to time, but the ones I’ve had now have been pressure headaches that spread down into my neck – rendering me pretty useless and grumpy. Luckily they don’t occur every day, and get better after five cups of coffee and a Paracet, but if they manage to sneak down into my neck my whole back goes ka-boom. Ruins my entire day.

Dryness of mouth – that’s an interesting one. Doubly problematic because the lack of saliva is really bad for my periodontitis so I have to be extra careful. I was recommended Xylimelt and Xerodent. Xylimelt has a long-term effect. You stick it on your gums and it lasts for about 2-5 hours. I was sceptical at first but it’s easy to get used to, works quite well, and doesn’t disappear down your throat whilst sleeping.

The problem with most saliva-stimulants is that they are also great laxatives. Xerodent is a complete and utter waste of money. The (weak) effect lasts as long as the lozenge – approximately 5 minutes – and if you take more than six, you need to stay close to a bathroom. However, Dentipro (generic brand from Swedish pharmacy Apoteket) is amazing. They have a strawberry-flavoured jellies that taste delicious, have a longer-lasting saliva-stimulating effect but aren’t laxatives!

All in all, not a bad bunch of side effects (and I haven’t even said a word about how amazing it is that my period is gone) – but they’re all rather expensive!!! (that was my complaint of the day).

A deflated, shrivelled balloon

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It’s a week since I got my first zoladex implant and I’ve now taken seven tamiprofen (at precisely 9 pm – I’ve set an alarm on my phone).

I’ve been wondering when the side effects will set in – I am expecting to experience every possible side effect and then some.

Somewhere in my mind, I’ve decided that my body being as weird and wonky it is, I should expect side effects before effects.

Yesterday I was showering and I realised that my tit no longer looks nice, firm and plump. One dimple has turned into many dents. I figured this might be my imagination working overtime.

This morning, I can no longer pretend. My right tit now looks like a shrivelling balloon. Not only has it shrivelled, the tumour seems to have decreased in both size and density. I’m due for a new deep biopsy on the 13th so it will be exciting to see if the tumour will deflate as rapidly as it grew and what the biopsy, blood work and imaging will show.