breast cancer

The Food Blog

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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

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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?

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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…

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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.

(Not) the Final Countdown

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Eleven weeks today, but who’s counting? Eleven weeks until I lose control over my life, and the cancer takes over. Eleven weeks until this dratted disease will remove every feeling of control I may (or may not) have. Eleven weeks until all hell breaks loose.

But at least I now have a faint idea of what the next year will look like – assuming there are no complications. Knowing my body and my medical history, the probability of a straight run is non-existant – but onw can always hope.

My surgery is scheduled for the first week of September. At the moment no-one knows how extensive the operation(s) will be. A new MRI is scheduled for August 7th, and it will (hopefully) show whether I need a partial or full mastectomy. According to the onco, not only have the cancer cells decreased in size but it seems that they have also decreased in number.

Not that it really matters. There are a large number of lobules, lobes and ducts in the breast and as the tumour has been growing between these, the surgeons will remove as much tissue as necessary to make sure they’ve removed every single bit of cancerous cells. I would rather they remove too much than not enough. I have heard horror stories of women who have had three surgeries because the surgeons didn’t remove enough.

After the surgery, I’ll have four rounds of chemotherapy, three weeks between each round. It’s more of a precaution than anything else, and is a requisite part of the study (I won’t be needing any before surgery, since the tamoxifen/zoladex combo has been so effective). As far as I can tell it’s normal to wait 5-6 weeks after surgery before chemo starts, so I should start chemo the second week of October. Pretty much guaranteeing I will be hairless by November, I am going to freeze my tits off with no hair in December…

Radiation is next. Depending on whether they’ll send me straight from chemo (last dose just before Christmas), I should start in the beginning of January. Onco says that I should expect 4-8 weeks of radiation, depending on the success of the surgery, my response to chemo and a whole bunch of other variables. That should bring us up to February or March.

Then there’s rehab. Just as all roads supposedly lead to Rome (although I’m quite certain that more roads lead to Kroer), everyone who’s had cancer says one should go to Montebello. Now, there’s two Montebellos in Norway – one is a district in Oslo with a flimsy reputation, the other is a cancer-specific rehab centre in Lillehammer, Hedmark county, famous for the Olympics and an awesome Norwegian crime series starring Little Steven (the first season was excellent, the second fair enough; let’s just pretend that the last one was never made). That’s normally a 3-week course bringing us to May (possibly April).

In other words, in eleven weeks I will lose all control of my life until next spring. I hope that I can just hide under the covers in between battles this winter.

Oh, and in case it isn’t on your mind yet …

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.

 

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.