Cancer isn’t just a physical disease.

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Cancer may be a physical disease, but psychological problems follow in its wake. Anxiety, depression, fear of the future, insomnia, these are all considered “normal side effects” of the diagnosis.

There are a plethora of meds that can relieve these symptoms. We have good meds for almost all the potential side effects of cancer drugs. Yet for some insane reason, taking antiepileptica for neuropathy (even with the warning red triangle ) is fine whilst taking benzodiazepines for your anxiety isn’t.

One of the ironic things about flatigue is that you’re so exhausted you can’t fall asleep. A resting heart rate of 120 didn’t exactly make things better. So to get at least a few hours’ decent sleep, I took a Stilnoct. Every single night. Weaning myself off them hasn’t been easy, but now my insomnia is back to normal and I last took one two weeks ago.

In cancer support groups, if someone asks for advice in regards to neuropathy the answer is always “Neurontin or Lyrica”. No-one would dream of suggesting anything else cos these are the only two meds that may work and there are no other known effective treatments. If you suffer from insomnia a couple might suggest warm milk with honey but most responses are for Imovane or Stilnoct or some other hypnotic. But if someone asks for advice on meds for anxiety issues, you can be certain that 90% will respond “try yoga or counselling cos drugs are addictive”.

You know what else is addictive? Life.

Life without cancer, without pain, life that feels good because you’re alive and well.

A life where you aren’t stuck in your tiny bedroom because you’re so afraid of the world outside the duvet that you’re terrified to stick your nose outside the door.

A life where you can have normal conversations with normal people because your brain can actually formulate sentences that don’t start with “I AM TERRIFIED” and end with “OF DYING/CANCER/PEOPLE/GOING OUTSIDE/BUYING GROCERIES”.

A life where you can go watch a movie with friends, a comedy even, and laugh so hard that the sugary soda you’re drinking squirts out your nose because you aren’t afraid of drinking sugar, or having a laugh amidst the terror of cancer, or hanging out with friends and enjoying yourself.

A life where you get treated for cancer and end up in remission, because you’re not so terrified of your own shadow that you don’t go to your GP when you find a lump and if you do, you don’t take the offered treatment cos needles and meds and stuff are a fate worse than dying in pain.

If you need a pill (or ten) to do all those things, does it really make a difference if that pill is to soothe the neuropathy in your feet so you can walk or soothe your nerves so that you can face the outside world?

Most people who suffer from mental health issues (regardless of the cause) have gone a long and cruel path before they ask a doctor for help. Sometimes the path leads them over the cliff before they see a doc. I doubt if anyone woke up one morning, cowered under the duvet for a few minutes, and decided that they were going to get a prescription that afternoon.

So if someone you know has cancer asks for advice about anxiolytics or hypnotics or psycholeptics – have the decency and respect to either make a suggestion or stfu. If all you have to contribute is yoga, wheat grass and incense then you need to rethink your priorities and pray that you never ever need any kind of psychiatric drugs.

Oh, and if you know someone who has other mental health issues, don’t be condescending, don’t pretend you know how they’re feeling, don’t suggest your stupid zumba class because chances are, they’ve already tried every single shitty idea you bring, and the reason you know that they’re having mental health issues is because they’ve finally found something that works so that they are strong enough and brave enough to tell you.

Be respectful, because their telling you is cos they respect you and think you’ll treat them decently. Do the same in return.

Sometimes, my brain screams

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Especially now. It screams at night and it screams in the daytime and it feels like it’s trying to take over my brain.

Not all the time, of course. Just every once in a while it starts shrieking and will not STFU. And it’s a bit like the very first time you wrote a computer program with LOOP in it – at least once you would forget to write END and it would keep going until you shut it down. Sometimes you could even get it to do an exponential core dump (probably the wrong terminology but those of you who’ve played with UNIX know what I mean and the rest of you would have to have it explained) and everything would just screech to a halt veeeeeeeeeeeeeeery slowly and you’d need a complete system reboot.

I think we managed to anger a few sys.admins in the old days.

But I haven’t got a sys.admin to reboot my brain. Sometimes I just need to drown the noise and although it’s much more fun doing it with alcohol, music works just as well.

Noise, pure and simple. Real noise. Sometimes you’ll find the perfect album which won’t leave the cd player for weeks. And sometimes you’ll find that perfect song and let it go on repeat for hours on end.

You weren’t really expecting some major surprise here, were you? These two together – damn. Not often two such greats make each other even better.

Play it LOUD. Drown in the music. Just be. Feel the core dump dissolving. Play it again until your mind feels more at ease. Then play it again cos this is such an awesome piece of music.

Sirius café

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I’d heard rumours about the waffles and coffee served to radiation patients at Radiumhospitalet which is the only cancer-specific hospital in Norway. I had my radiation at Ullevål sykehus and apart from the first day, they managed to set up all my 15 appointments between 4 pm and 7 pm which was great for driving but both the café and Vardesenteret. Vardesentre (varde = cairn) are run by the Norwegian Cancer Society and are meant to be a space for cancer patients and their dependents. There are Vardesentre in the largest seven hospitals in Norway and they offer a hand to hold, a shoulder to cry on, ears that have heard the same stories, and coffee.

I need my coffee.

But at Ullevål the Vardesenter closes at 3 pm as does the café, so I had to bring my own.

So when I had my post radiation check-up at Radiumhospitalet I decided that I was going to find this coffee and waffle heaven!

Sirius kafé is run by the Odd Fellow Society of Norway and offer food, waffles and tea/coffee for radiation patients at Radiumhospitalet.

The waffles are donated by Prior and were seriously delicious, especially with blueberry jam! Loads of blueberry jam. And raspberry jam.

Last medical appointment for now. Check-ups in summer and still waiting for cardio, but I felt as if these lights were guiding me into the next part of my life.

Or an alien landing strip.

Especially seeing as Sirius used to be ‘my’ star – Siri (and) us! The dog star, the brightest star in the sky.

Bad hair days are back again

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Chemo gives a wide range of side effects, most of which are highly unpleasant and there is nothing on this planet that can make them fun and there is nothing positive in them.

Strike that. All but one are unpleasant and negative. And I’m one of the few people who probably regards even that one as positive.

But for me, alopecia has never been an issue. I have been looking forward to it. It gave me an excuse to chop my long hair off and colour it bright pink, and I doubt if it’s been bleached this often since I was at UKC and changed my hair colour every week or so. I loved that barber shop downtown and with easy access to Directions hair dyes I had a blast!

I bought a whole bunch of wigs in different colours, lengths and styles and have been having fun wearing them all winter. After all, what’s the point of having wigs if you can’t use them? Wearing a wig means never having a bad hair day, after all. And seeing as people are used to my changing colours and hair styles on a regular basis (at least I used to) some haven’t really noticed that they’re wigs!

My hair has started growing back and I am constantly having bad hair days. Not just because I’m a heavy sleeper but it’s winter so I have to wear hats. My scalp has been fuzzy for weeks – not cute kitten kinda soft fuzz, but fortnight old lambs. The hairs have been growing at 1 mm per month rate. But now they’ve gone all anarchistic on me, so some are growing a lot faster.

And I mean a LOT faster.

Some hairs are several inches long whilst most of it is short. I’ve given up hope that my “cancer hair” will be rainbow coloured and there is no glitter in sight. Nor is there any sign of curls.

It’s just grey on grey on grey.

And bad hair days.

And because it’s growing at different rates and I’m having those hot flashes again, I can’t wear my wigs for long periods cos I get all sweaty and itchy (no, the wig doesn’t itch but having sweaty hair that bends different ways itches).

The big question now isn’t whether I will colour my hair again, it’s how long I can stand this grey-on-grey and/or if I get the hair trimmer out first. If I do, it’ll probably grow at the same rate but it will take a long time before I can colour it – but I might grow completely bonkers looking like this.

Look good, feel better aka grown-up make up!!!

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I’ve never learnt how to do my make up. Not properly. Words like foundation, blush, rouge, day/night cream, brow liner, lip liner scare me. I’ve always made do with lipstick, mascara, eye liner and eye shadow. That’s it. No mess, no fuss.

But when oncology has a quarterly make up course for breast cancer patients and you know you’re probably going to lose eye lashes and brow, of course you sign up for it! It’ll be fun, of course it will, and you might actually learn how to do proper grown-up make up.

Look good feel better is a non-medical, brand-neutral public service program that teaches beauty techniques to people with cancer to help them manage the appearance-related side effects of cancer treatment. The program includes lessons on skin and nail care, cosmetics, wigs and turbans, accessories and styling, helping people with cancer to find some normalcy in a life that is by no means normal.

There are affiliates in 25 countries and in Norway, there are make up courses quarterly at the 7 largest hospitals. If you are a female cancer patient at any of these hospitals I would highly recommend attending one of these courses!

We were a dozen or so women of all ages and make up levels, and the only thing we had in common was our lack of hair. We all got an amazing goodie bag filled with stuff I have never ever owned before in my entire life, which was fun, and we got a great step-by-step demonstration on how to do facials and keep the skin hydrated and look good even when cancer makes you all pasty and bloated and white.

I discovered that my upper lashes have mostly stayed put whilst my lower ones were kinda missing. I can see that my brows are sorely lacking in colour and mass so good to learn the curvature of the brow so one can pencil them in!

 

The goodies are from a variety of companies, thank you to KLF (The Norwegian Cosmetics Association) for make up and thank you to the volunteers who make it possible!

Unfortunately no pics of me made up, cos my flatigue was pretty bad and I didn’t really think about it, but I truly enjoyed myself. I think we all did – in the midst of hardcore treatment and a horrific illness, these little snippets of joy are what keep us going!

Hormonal bitch, anyone?

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I’ve always had hormonal issues, which is why my GP put me on Diane/Dianette som 20-odd years ago. It’s an estrogen emitter which has somewhat alleviated my androgen hormonal issues.

But even taking estradiol on a daily basis, my estradiol levels have always been extremely low. Looking at my blood work for the past decade I’ve always had 0.1-0.2 when my levels should have been >1.0.

According to Dr. A-hole (more of him in a blog to come) my tumour was probably mostly progesterone sensitive rather than feeding on estrogen, which makes sense – why would I get a humongous tumour that feeds off a hormone I hardly produce?

I’m taking tamoxifen now, and will be taking it for the next ten years. Tamoxifen (if you read those older posts) inhibits the production of estrogen thereby reducing the risk of a new estrogen-sensitive tumour, which is great! If your tumour fed off of estrogen to start off with.

In men, tamoxifen can be used against infertility and increases testosterone production.

Women treated with tamoxifen have been found to develop primary tumours elsewhere in their body (though a link has not been found – though I doubt if anyone has done much to look for it).

After starting on tamoxifen in December, I’ve been growing a beard. That hair is growing much faster and better than anywhere else on my body. Stressing as I was after talking to Dr. A-hole, I asked my nurse about this. She checked with an oncologist and could tell me that this was a perfectly normal side effect of tamoxifen.

So basically, my hormonally crazy body which has always produced too many androgenous hormones (progesterone and testosterone) is now producing even more of them.

Guess what. “However, PR action in breast cancer is grossly understudied and remains controversial.” (PR: progesterone receptors). “women with high testosterone serum levels appear to be at a significantly increased risk to have or to develop breast cancer within a few years”

“Premenopausal concentrations of testosterone and free testosterone are associated with breast cancer risk.”

Am I scaring you yet? I’m certainly scaring myself here.

Basically, I had a hormone-sensitive tumour which most likely wasn’t estrogen-sensitive but rather androgen-sensitive because my stupid body has always produced loads more androgen hormones. I am currently on a medication (that I am to take for the next ten years) that decreases estrogen production (a virtually non-existent production to start off with) and increases androgen production (if hirsutism is a common side effect, then increased production of androgens is the cause and therefore another side effect).

I am on a medication that is increasing the hormone imbalance in my body, the very same imbalance that gave me the darned cancer to start off with.

I’m no doctor, but that sounds more like they’re increasing the probability of me getting breast cancer again – or cervical cancer (which is a well-known side effect of tamoxifen).

I have my first set of check-ups in June. Unless I freak out completely before that and demand a full blood screen and appointment long before. At least I have sufficient grounds to demand a mastectomy of my so-called healthy breast. I don’t believe for one second that it is, or that I won’t find a tumour there in a year or two…

Stress levels and heart rate rising – AGAIN – here’s some stress-relieving, comfort music:

https://www.youtube.com/watch?v=KNI3s5UsfXY

Manicure = surgical tape and gauze

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One side effect of Taxotere is onycholysis – a fancy term for “the painless separation of the nail from the nail bed.” Not everyone does, there are a few things that may (or may not) help. I had great fun using fancy nail polish all the time – I still lost 8 nails on my toes and my finger nails are only just hanging on.

As I’ve been pretty much offline the past four months, most posts will start in the middle – which is why we’re now looking at my nails of today.

They are growing, slowly but surely, and I cannot wait to not have to deal with tape and gauze multiple times. Surgical tape sticks well (which is good cos – finger tips – major useage) which also means that the outer 5 cm of my fingers are permanently sticky.

Try handling small squares of gauze with very sticky fingers. It’s not easy.

Which is another reason I’ve not been writing much. When your fingertips are ten times their normal size, it’s difficult to type!

I am longing for healthy, long nails that don’t hurt when I trim them, and not having to use garden shears because they’re – hard as nails…

 

One-tit wonder

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It’s now been three weeks since my mastectomy and tomorrow I will be getting the results from pathology. They found cancer cells in the sentinel lymph nodes, so they removed a whole chunk of lymph node tissue from under my arm as well. If the cancer has spread into that as well … 2018 could be even more interesting that I wanted.

But that’s tomorrow. And because I am so far behind on my blogging, let’s just revisit some good music.

We all know what a one-hit wonder is although we tend to disagree on the definition.

A friend of mine had this as one of the songs in his funeral:

https://www.youtube.com/watch?v=WlBiLNN1NhQ

For some of us, Chumbawamba are far from a one-hit wonder but this was their only commercial success:

Great band. I had the pleasure of interviewing them at UKC a million years ago, for KRED, and seen them a number of times.

Fear Factory

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Some questions should never be asked.

Of a person who has just been given the cancer diagnosis, “Aren’t you terrified?” is one of them.

It’s probably one of the stupidest questions on earth.

Most people who are facing cancer treatment are scared. Being asked it is about as useless as “Are you alive?” or “Are you human?”, and worst case scenario, you end up scaring the person even more.

I’ve never been afraid of my own cancer, but I was talking to a very dear friend who had cancer for the first time at age 22 (a few years and couple of cancer rounds ago) who said “I am terrified every single day of cancer” and she’s not alone in that.

Waiting for bad news is terrifying, this is standard human behaviour.

Finding that damned tumour is terrifying. Waiting for the results of pathological testing is terrifying. Waiting to start cancer treatment is terrifying. Going through treatment is terrifying. Waiting to find out if the treatment works is terrifying. Waiting and hoping for the “cancer-free” message is terrifying.

If you’ve survived cancer you will always be terrified of cancer, for the rest of your life, because the probability that you will have cancer more than once is highly probable. Breast cancer survivors are more likely to have skin cancer (due to radiation treatment), gynaecological cancers and a second round of breast cancer.

Cancer strikes the fear of God into even the strictest agnostic.

And no, that fear is not understandable if you haven’t been there. If enough people ask if you’re afraid, you will become afraid.

But the people I don’t understand are those who fear cancer testing. Mammograms, ultrasounds and smear tests are uncomfortable. There isn’t a woman I know who doesn’t dread a visit to her ob-gyn, but seriously.

Ten minutes of discomfort yearly are a small price to pay to not have to undergo chemo that knocks your body well out of shape. Having to look at your sagging breasts in the mirror once a week may be a sad reminder that we are long past the perky tits of our twenties, but looking at two healthy tits is a whole lot better than having to see one missing.

This is the most important meme in the world and I will keep sharing it forever. These signs and symptoms may come months before you feel that darned lump!

A twentysomething once told me that she was more concerned about the potential side effects of the HPV vaccine than getting cancer. I’ve hardly seen her since I was diagnosed so I think she might be under the impression that it’s contagious. Misinformation kills!

If you have genetic cancer in your family, please make sure you have regular check-ups. Get your genes tested – I know that knowing that you have a disease gene is bloody terrifying, but even if you have one or more of the dreaded genes it doesn’t mean you’ll get cancer. You are predisposed and should have yearly checkups, but it also means that the probability of it being found early on, getting appropriate treatment and becoming cancer-free is much greater than not having the gene, sticking your head in the sand and dying cos you thought “It won’t happen to me”.

I don’t have any cancer genes. My body’s lack of estrogen production should have ensured that I didn’t get an estrophile tumour. Yet I did – shit happens.

Having one or more of the breast cancer genes also means you can get a double mastectomy, get silicone implants, and guess what – no mammary glands, no breast cancer. No uterus, no gynaecological cancers.

And if you do find a lump in your breast – DO NOT GOOGLE! Another dear friend of mine found a lump just before Christmas. I must admit that I have been terrified on her behalf. If I knew a year ago what I have learned about breast cancer over the past year, I would probably have been shitting bricks for myself. Turns out she has the same as me *phew* which was an enormous relief.

There are so many different types of breast cancer, some are more easily treatable than others, and the one I have – though it had an extremely aggressive growth rate – is the one that’s easiest to treat and survive.

Cancer is a fear factory. You will wake up every single goddamned day for the rest of your life wondering “Is this the day I get cancer again?”. It’s up to you to decide how much that fear is going to ru(i)n your life. Not that you can make the fear go away, but if you let it paralyze you, it will.

Then again, you can get hit by a truck tomorrow.

My silver anniversary was spent offline…

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In October I had a silver anniversary.

Internet and I have been connected more or less full time for 25 years.

That’s a long time.

It all started with sb13@ukc.ac.uk, has been through numerous email accounts (including several anons in Finland), a dozen computers/terminals and most OSes. I started my online career with mail, cat, jove, vi, irc, tetris, text-based rpgs and vms.

I’ve agonized over slow modems and trying to get the TCP/IP adjustments correct. Plug and play did not exist in those days. I can remember the very first days of Netscape and playing Doom on the office intranet.

In other words, I was at one time at the peak of technology.

My N95s, from left to right: 2008-14 and is used for charging as the screen is kinda wonky 2014-? is my current phone The last one is for when the current phone dies…

No longer. I am now very happy to have my faithful N95, and although it was first generation smart phones, it now has very limited options: I can make calls, send messages, take awesome pictures, and play on facebook.

That’s it. So what with neuropathy, flatigue, muscular pain, acute tendonitis in both arms, a resting bpm over 120 and loose nails on both fingers and toes, I have been more or less offline since the end of September.

Which is probably the longest time I’ve spent offline even through the early 90s (I was allowed to sneak in to UiOs servers and log on to my anon email accounts).

Apologies to all who have sent me emails or awaited updates here, there are a gazillion blogs coming but they are not pubishable from my N95.

And no, I can’t use a touchscreen thingamajig cos my tendonitis flares up.

Soooo…. I’m afraid you’ll have to stay patient a while longer. My finger nails are threatening to fall off. Sorry.