cancer

From heaven to hell (we are now entering phase II)

Posted by

Magical purple willow lantern

In 12 hours I will be waiting for my first dose of Taxotere. Taxotere is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug and is classified as a “plant alkaloid,” a “taxane” and an “antimicrotubule agent”.

Worst case scenario: chronic neuropathy, myalgia and arthralgia; chronic hair loss and acute nail loss; nausea, diarrhoea and vomiting; fatigue, weakness and fluid retention; anemia; fever and insomnia.

Yay.

Went to the hospital for a new biopsy today. On the way home, a semi had blown a wheel (or something) so we were all stuck in a tunnel for a long time. Long enough for P6 Rock to play both Road to Hell and Highway to Hell. Not sure if it’s a sign of sorts. Happy that DAB radio worked in that tunnel.

Some have asked me why I’m getting chemo before the operation instead of after.

As you may recall, the tumour shrunk dramatically the first couple of weeks. I’ve now been on Tamoxifen/Zoladex for 6 months and it stopped shrinking a couple of months ago. Although it’s still shriveled and deflated, it’s still almost the same diameter as the first time I had an ultrasound (ca 5 cm) so instead of calling it quits with my status as guinea pig (let’s face it, not much use in checking effect of meds after the mastectomy) The Powers That Be want to see if chemo after tam/zol will reduce the tumour more or if it’s as small as it will get.

So we’re entering phase II instead of just testing tam/zol. Hooray! I get to be a guinea pig for at least 8 more weeks! And I can now blame “chemo brain” for everything I forget.

The Food Blog

Posted by

2

Food. Rarely have I been more obsessed with what I eat than the past six weeks. Going cold turkey on carbs (CTOC) wasn’t as horrible as I expected. I guessed that the goal of ‘27‘ would be motivation enough. I just wasn’t prepared for the side effects of no carbs!

My standard meal: fried egg, bacon, apple, spring onion and broccoli on a bed of lettuce and cucumber. Yummy!!!

A night or two after CTOC I didn’t wake up drenched in sweat, which was a relief. This continued for several nights and I was thinking that onco was right – the hot flashes were disappearing! My sleep-deprived brain didn’t really think any further than that. I do not function without enough sleep. When my life was still mine, and I was working, I sometimes had to apologise whilst doing field work because I know I turn into short-tempered bitch if I don’t get enough sleep…

Changing my diet was pretty easy. As I’ve had digestive issues for quite a few years, knowing what I can and can’t eat helps. Main CTOC-foods: lettuce, broccoli, spinach, cucumber, spring onion, apple, celery, chanterelles, quark, reikäleipä, moose meat, egg and bacon.

Which gets really boring after a while.

I can also eat cheese, shrimp, olives and pomegranates. Still kinda boring.

Button mushrooms with egg, cheese and freshly ground pepper.

A few days after CTOC my stomach was as good as it gets, and I was off on an exotic, overseas adventure to Sweden. Norwegians tend to go to Sweden to buy cheap booze, fags and meat. I go to get cheap cat food, tooth paste and allergen-free foods. We’re creatures of habit, always going to the same restaurant (Joe’s Diner) and eating delicious food (Joe’s burger or the Schnizel). I had decided that I was going to pig out on burger & chips and not care that I was subjecting my body to loads of carbs. Even on the strictest diet one should sometimes pig out.

The meal itself was a bit of a let-down. I realised that I didn’t really miss the bun or the chips that much, I felt bloated full rather than just full and slightly unwell. Got home, unpacked the car and was making coffee when the first major hot flash hit me. The next 36 hours were bad – really bad – and I realised that my lack of night sweats wasn’t because the side effects were going away, they were a direct result of going COTC. No carbs, no hot flashes.

The ultimate prawn dish. Bread & mayo not necessary. Lettuce, prawns, fresh dill and cilantro with a squeeze of lemon. So delish!!!

Six weeks (and quite a lot of experimentation) later, I have a slightly longer list of yes-food. I can eat small amounts of wheat in battered foods (fish’n’chips, here I come!), sauces and dark chocolate. Wines and white spirits are ok, beer and brown spirits send me into hot flashes faster than I can write this. I try to keep my meals as crunchy as possible (for some reason that works best for me).

And I’m only halfway to 27. Still in sight, still aiming for the stars!

I want a humane death when the time comes

Posted by

I’m not religious. I could never believe in any deity that would put people through so much suffering just for the hell of it. I don’t believe in heaven or hell, and I’m quite certain that when I die, I’m done with this place. I won’t come back to haunt my enemies, I won’t be reincarnated as a cat, there will be no soul to capture, and I’ll just be gone.

I’ve already made a deal with the University of Oslo for body donation. Not because I don’t want my organs to keep someone else alive, but because the probability of dying in such a way that my organs can be used for transplanting is quite small. One has to die in a donor hospital – ie DOA doesn’t cut it. And if I’d been a med student I would have loved the idea of examining me, with this weird body full of so many flaws og wonky bits that interesting stuff is bound to be present!

Doing a body donation also means that there won’t be a funeral right away, just a memorial service. As Norwegian law is quite clear on the subject, someone has to bury at least a small part of me, within three years, so I’m hoping they choose my left thumb (only part I’ve never had an issue with). I’ve also got the approval for getting my ashes spread in my forest rather than a burial. This also means that there will be no gravestone and no marker to point where my ashes fertilize the earth and become cloudberries (knowing my luck I’ll probably just be the bushy head of a hare’s-tail cottongrass).

Thing is – I don’t want anyone to have to take care of a “final resting place” for me. It would be hypocritical for me to be a burden after I die. And quite frankly, if family and friends can’t visit me while I’m alive, I see no reason to give them any place to mourn me after I’m dead. They can always visit the forest and remember me there, but I see no reason for anyone to have to take care of a grave site with a bunch of bones in it.

Which also means that I am a firm believer in assisted suicide (the term assisted suicide is preferred as a phrase over euthanasia due to the eugenesist politics of the Nazi era). I don’t understand why putting a dog to sleep is considered humane, whilst insisting humans have to wait for a natural ending isn’t. Where is the humanity, decency and dignity in letting a human being without quality of life lie in a bed and just wait for an ending that might take weeks or months? Where is the peaceful transition for his or her family, who have to sit and wait for the inevitable to happen? Have to sit and watch a loved one not get the eternal rest they wish and beg for?

There are a growing number of institutions that offer assisted suicide and of organisations that work for the right to decide over one’s own death. UK-based Dignity in dying is one of them. In Europe, there are a number of countries who now allow assisted suicide and hopefully there will be more countries joining them.

Not that I have any plans of dying anytime soon.

Personally, I hope that when my time comes, some old farmer will just drag me behind the barn and put me out of my misery. I don’t want to grow old with nothing to live for.

Is eternal guilt an English thing?

Posted by

I feel guilty a lot of the time. I feel guilty when I’m at the hospital surrounded by sick people. I feel guilty when I think of friends who have terminal/inoperable/painful/fucked up cancer. I know it’s crazy, yet I feel guilty several times a week.

I feel guilty because I’m on a really effective treatment schedule. I feel guilty because the tumour was discovered so fast. I feel guilty because I don’t have any spread to lymph nodes, because there is only one tumour and it’s freestanding, I feel guilty cos I’m not suffering from tons of side effects.

I feel guilty cos I get the best and easiest part of treatment during summer and can spend the autumn and winter months tucked away in bed, with no-one expecting anything of me.

I feel guilty cos I have an easy form of cancer. I feel guilty cos the probability that I will die from cancer in the next two years is so small it’s not even worth mentioning. I feel guilty for being happy and pleased most of the time. I feel guilty for being grateful for the cancer diagnosis.

I feel guilty for feeling guilty cos to be honest: I don’t think anyone who doesn’t have cancer walks around feeling guilty for not having cancer. I certainly know that I didn’t. There is absolutely no logic to my suddenly feeling really bad about this.

I’ve tried to identify why the hell I am so guilt-stricken suddenly. I think it must be because I spent much of my childhood in England, and went to strict and religious schools in Surrey, UK and Ft. Lauderdale, Florida. I have no other explanation. Not that they were Catholic or Jewish – who I used to believe had the rights for eternal guilt – so it’s more a wild guess.

Take these sweats away from me…

Posted by

If you get the line, I’ll be slightly impressed. It’s been rolling around in my brain for a couple of weeks and I just had to write it down. I must say I prefer PSB over EW any day, although I’d forgotten just how sickeningly sugary-sweet Patsy’s vocals are.

But the sweats that are hounding me have no semblance to that tune, more another (slight) complaint.

I have a skin disorder called prurigo nodularis. As with most of my diagnoses, no-one knows where it came from, it’s hard to treat and will never go away. I’ve had it all my life and only recently was I sent to a specialist who actually looked at my lesions, gave me a proper diagnosis and treatment suggestions. These include showering no more than twice a week, drinking loads of water and using great amounts of ACO Miniderm lotion which I buy in Sweden, cos 500g costs less there than 100g in Norway.

But the combination of night sweats and not showering if I’m off to meet someone – that’s not happening. Being drenched with sweat every single night means that if I have appointments five days one week, I need to shower five days that week – and it only took two weeks of three showers to send my prurigo into a hissy fit.

So, we’re back to massive amounts of moisturizer and the bed covers are now drenched in sweat and lotion. And cat hair. Yummy.

Why cry when you can laugh?

Posted by

1

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.

 

Tumour is now off the charts!

Posted by

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!

Posted by

“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

A new diagnosis in an old body

Posted by

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.