Just another health scare?

In June I found a small lump in my groin cos it hurt.

I didn’t want to deal with it, attributed it to walking into a tree or falling on my arse or bumping into something stupid and tried to forget about it.

Couldn’t forget about it in September when it started hurting and had grown – massively – and kept growing.

A fun side effect of cancer is that you’re more prone to getting cancer again, and the lovely Tamoxifen that I’m on has cervical cancer as a probably side effect. Fuck, not cancer again???

Couldn’t get hold of my GP so went to the ER and got an ultrasound (I know the drill by now) and tech/doctor says “You need to be referred to oncology”

Still couldn’t get hold of GP so called another doc and said “I need a referral, that’s all I need from you, send me to onco and I’ll be out of your life”

Had a lovely holiday in Lo Pagán, Spain, apart from the fact that I got some kind of weird sun rash – it wasn’t red, didn’t itch, wasn’t a sun burn, just weird blisters which disappeared after 24 hours but came back if I didn’t use sun block.

Got home to a nice visit at haemotology at Ahus. “We’re gonna do some bloodwork and a biopsy and a CT and see where we send you next”

Biopsy first. Fkn stupid surgeon. “I can only see pus, are you sure it isn’t an ingrown hair and sebacous gland?” YES we did an ultrasound so do your work and stop being a fkn twat “ok I’ll see if I can find something”

Date with a doctor at Infectious diseases was nice. “So, we’re pretty sure this isn’t lymphoma but the CT was kinda weird so we’re referring you to a gynecologist also sending off tests to Sweden for Bartonella cos I never get to do that cos it’s expensive but you’ve got the syptoms and we’re also testing you for tularemia because of your tick bites”

She called me last week. I have tularemia – rabbit fever – hare plague (harepest) in Norwegian – from a stupid fkn tick (who are all over me since chemo cos apparently I’m now irresistable). Mortality rate is pretty high in the US but not that bad here in Norway.

“We’re still awaiting some test results but at least we have a cure for that!” so she puts me on ciproflaxin which is a new antibiotic for me and the nice lady at the chemist told me that it could be pretty hard on the stomach so important I eat and take the pills twelve hours apart – as on the dot as possible – and I should really read the instructions.

Most of the instructions are “If you have this side effect, contact a doctor IMMEDIATELY, do not pass GO, do not wait an hour, get your ass to the ER ASAP”

"Ciprofloxacin is a fluoroquinolone (flor-o-KWIN-o-lone) antibiotic, it is used to treat different types of bacterial infections. It is also used to treat people who have been exposed to anthrax or certain types of plague. Ciprofloxacin extended-release is only approved for use in adults.

Fluoroquinolone antibiotics can cause serious or disabling side effects that may not be reversible.

Ciprofloxacin should be used only for infections that cannot be treated with a safer antibiotic.”


Turns out, this is top notch bad shit fucking horrible side effects. Anorexia is a new one for me but it’s actually kinda nice to not eat and not be hungry and not want to eat apart from the whole “you must eat before you take the pills”. I shouldn’t drink coffee (that’s not happening) and insomnia is kinda wild – again – ffs

The worst side effect though is probably the “your mood might turn a bit negative”. Fuck that. These pills are fucking screwing with my head in the worst ways possible. “A bit negative” doesn’t work when you’re as fkd up as I am. My mind is never in any kind of state where it can tolerate “a bit negative” cos I crash completely. If you think I’m ignoring you, I probably am. Not in a good head state right now. Actually in a pretty shitty one. Wrote this yesterday. It’s not pretty so don’t read if you don’t want to.

It’ll pass. It always does. My 80 hour Marshalls are on most of the day cos  I relly need to drown out my screaming brain but Nick Holmes is with me and keeping me kinda sane. Thank fuck for Paradise Lost

Gynecologist was a bit “It doesn’t look right but I’ll take some tests and let you know” so still waiting for results from a few tests. Fuckit.

Hormonal bitch, anyone?

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:

When science brain says BOLLOCKS (except it doesn’t)

I think I’ve said it before. Actually, I know I have, but it can’t be said too often. I have the bestest two sisters in the world and I am most sad that there are massive amounts of water between us. Luckily for me, they always sorta stay near each other.

This arrived in the post today. It’s a ‘fing’ of sugilite, stars, pink and love. It’s a love stone. For me. From my sistah. And I love it! Oh, and yes, it is as heavy and gorgeous as it looks. Very nice purple. My kinda purple. And hers. *squeals with joy*

And science brain is being very quiet (although neuropathic fingers are kinda screaming) cos the truth is, science wouldn’t be of much help if I were alone in this. If I didn’t have a tribe watching my back, keeping me company, keeping me sane, holding my hand, making sure that I am moving forward.

Science ain’t much help if you’re in this fight alone, cos it’s a hard and rocky road and there are precipices all along the really narrow path and it would be so much easier to just give up and give in and admit defeat.

So science brain is being as quiet as a mouse, thinking that I am so grateful to all the people (and cats) out there who keep me on that path and keep me as well and happy as can be, and who make my life worth getting up for even on the days when I would have much rather stayed beneath the covers.

I even have an English rabbit (proper one, not a Derbyshire Rarebit-rabbit) boiling on the stove right now. How’s that for coincidence?

The Mercy Seat – three ways

(possibly) last gig of the year was Nick Cave & the Bad Seeds at Oslo Spektrum on Monday. I am tempted to go see Laibach on November 11th, although I must admit I am slightly worried about how bad the side effects will be after 5 rounds of chemo and probably won’t buy a ticket until the same day. If there are any available!

Back to Nick & the Seeds. They’ve been on my play lists for close to 30 years now, since Kicking against the Pricks (I think it was the cover of All Tomorrow’s Parties that got me started). Most artists who have been around for decades can be sorted into two: they still make the same kick-ass music they made 30 years ago, and even if you haven’t heard the last two-three-five albums, you know what you’ll get. Joan Jett, Ministry, Nine Inch Nails, Raga Rockers are bands I’ll happily go see cos I know what I’ll be getting.

There is a slight grey zone that included Bowie and Lou Reed, where the style varied but was always great!

Now, Nick Cave (and Einsturzende Neubauten/Blixa Bargeld, cos natural succession, and Haus der Luege is still one of my fave albums ever) belong to the second group. Artists who change their style dramatically over the years, and not necessarily to (what I consider) the good.

One reviewer even called him a “ballademaker” which in Norwegian translates to ballad writer. In Danish it would have meant troublemaker. The Nick Cave I grew up with did not write ballads. He wrote noize. Not as much as Blixa, but it was loud and heavy, post-punk (after The Birthday Party) goth rock.

Still brilliant up until 1997 – The Boatman’s Call marked (for me) the beginning of the end of the Cave I knew.

First time I saw Preacher Man was at the Quart festival in 1996. The most excellent day of gigs (first time I saw Ministry, too), the sun was shining and wow that gig was awesome. I’ve since seen him at the Grieg hall in Bergen (1998?), him and a grand piano and that too was wow – mind blown!

To be fair, the guy is a true master of words and his lyrics have always been dirty, black, dealing with death and religion and war and horrible things with perfection. I love his books. It’s just the music that has become so – ballady. Too sweet. My expectations were, needless to say, not exactly sky high.

And although there were too many ballads, there was also true perfection for old, cranky, die-hard fans such as myself. I love From Her to Eternity. I hate studio-Tupelo but live it is so black and slow and amazing that it is an absolute fave.

But top of the list – The Mercy Seat. The song that caught me in the first place, hook, line and sinker. Got me addicted, got me wanting ever more, in the most amazing ballady version. That is, my kinda ballad – soooooo slow to start off with, slowly gaining momentum, never letting go, never loosening that fiddle that drags it along as I imagine those on Death Row drag their feet on the way to the Chair…

And fitting that it was the day before my 4th round of chemo. Though my “mercy seat” includes great service, all the coffee I could want, food, good company and meds that are making me better.

Cos positive side effect #2 showed itself Monday. Concerts have, for me, been a right pain since my body stopped working. Standing on concrete floors – even if I’ve been moving – has frozen my lumbar region so if there have been bands I want to see, I have to really, really, REALLY want to see them cos after half an hour, I have been in pain, and the concert better be hard enough too be able to knock through that pain.

Not Monday. Monday went great. Back worked perfectly, didn’t crumble, didn’t stiffen, I didn’t have to bend myself gently into a chair after it was over. Yay! Hoping for four more rounds of chemo… this can only get better, right?

Oh, and all the pics are from the Quart festival in 1996 cos seriously, Preacher Man hasn’t aged at all. Probably wearing the same clothes, too…

The flat blog (cos flatlining would be over the top)

I tend to blog when I have energy. But now that I’m on chemo, there are more flat days and they take more space than before – so here’s the flat blog. Just in case you think I’m happy and energetic and out doing fun stuff all the time!

Second bout of chemo and it’s developing as expected. I spent most of treatment day in bed (cos going to the hospital and spending hours there fatigues me). Thursday and Friday weren’t bad – I’m thinking that the meds don’t really hit the system until day three.

Yesterday I was flat. Not Runaway pancake flat, just flat. No energy. No strength. No inspiration. But this was as expected (after the first bout) so I’d been smart and made arrangements to go mushroom hunting with a friend. Not because I expected to be re-energized, but because I wanted to see how far I could push my body even if I was flat!

We ended up with a really nice, three hour walk. Hunting means straying from the path more often than not so we walked about 2 km and I ended up with 8 kg mushrooms, she probably got twice that. That’s not a big haul in my world. When I was at my fittest I could pick 30-50 kg per trip, but that’s a few years ago – and I am most grateful to have dear friends who will accompany me on foraging trips and pick the foods I don’t have the energy to pick & clean!

Probably one of the smartest things I’ve bought this year. Pink, fluffy, soft, gigantic socks.

Got home and collapsed – slept for five hours. Watched a silly movie and slept for ten hours. Woke up and was void of energy. I’ve noted ‘flat’ in my calendar for the first weekend after chemo. I’ve tried to clean the mushrooms but only managed ten-fifteen minutes at a time. I’ve slept – and slept – and slept – and my feet are in pain. Neuropathic pain in the feet is expected, normal, and quite debilitating – it feels as if I’ve danced for a couple of weeks in flimsy high heels.

I’ve been wearing these fluffy pink socks to try to alleviate some of the pain. At least walking is slightly less painful but I’ve tried to keep my feet off the floor most of the day. And tomorrow will be worse. I asked the oncologist about my disco ball of pain and she told me “That’s a common side effect from the Neulasta, here, have some pain killers“. Preparing myself for pain day – I might actually take a sleeping pill to get through the day.

In the mean time I’m going to dream about my new, favourite boots from Demonia – wow! I’m in luuurrrrrrve!!! Wish list, people. Wish list. You know you want to see me in those.

Recharging my batteries & changing the schedule

I’ve been off on holiday. I went to England to visit my sisters to relax, recharge my batteries and simply forget about reality as much as possible. We started off with the Northern Green Gathering which was amazing – just a lot of really nice people, kind, loving, generous and amazing.

This is how happy spending time with sis and good friends at a hippie/activist festival in England makes me <3

After a few days of peace, love, rock’n’roll and alcohol, it was time to move on to greener (and greasier) pastures – Bakewell was next! Home of the Bakewell tart, Austrian sausages and two bridges covered with padlocks.

Culture is also a necessity. We therefore descended upon Kedleston Hall which is breathtaking.

During my stay I had three rounds of fish’n’chips (once with Stilton chips and twice with gravy), meat feast brekkies that kept me full until the next day, a couple of pints of proper cider and a couple of glasses of proper bubbly, more cups of tea than I can count and tons and tons of love.

There will be more!

For now, autumn has been turned upside down (slightly) so I’m having chemo before the operation rather than after. I was given the choice and figured that we might as well see how chemo works after 6 months of great results on Tam/Zol.

I haven’t got the dates yet, but sometime next week I should have my first dose of Taxotere. We’ll be starting off with 4 rounds, fortnight between each, which means I have September and October pretty fully booked. After that – possibly more chemo and/or surgery.

And in case you were wondering – I’m not “that” Siri.

More once I get my photos and memories sorted!

 

First time for:

  • watching GoT episode (2 eps)
  • watching Guardians of the Galaxy (vol 2)
  • using the magic bit of my credit card (twice)
  • insulting little old ladies (2 of them, too)

The soundtrack(s) of my life I

I’ll be the first to admit that my music tastes are eclectic and pretty boring. After all, the newest band I’ve seen in the past 16 years is Nine Inch Nails (1988) and the newest band I listen to is Linkin Park (1996). I have a bright green mp3-player which is full of music – David Bowie, Linkin Park, Ministry, New Model Army, NIN and Pink (I know she debuted in 2000 but there are  only have 3 songs of her that I like).

Yes, it is a digital player! I am in the 21st century!!!

Booooooooooooring, I know.

Add to that list Velvet Underground/Lou Reed/John Cale, Depeche Mode, Alice in Chains, Laibach, The God Machine and Nick Cave and my goto music list is kinda complete. This list does not include Norwegian bands cos I was lucky enough to have my own record label for the most awesome Norwegian music releases, Siri Rekkårdz.

A large portion of these artists/bands no longer exist. David Bowie died from liver cancer after the release of the Black Star album. Lazarus was released days before he passed – his swan song.

I have to admit, my love story with Bowie started in the late 70s and built up until the release of Outside in 1995. I remember I was sitting in the offices of Norsk Rock Forbund, currently working for Oslo Rockforbund, doing some layout promo shit and the radio was on and they played Hearts filthy lesson. First I heard was  Trent Reznor – then Bowie’s voice – and I was in heaven. I can still remember the goose bumps on my arm, the way my mind just blanked out everything for this amazing musical fix – Bowie and Reznor! Together, in perfect harmony! Damn, still getting the goose bumps and all, more than two decades later…

What’s good? Life’s good, but not fair at all¹

But today’s blog seems to be about Lou Reed. I tend to start writing and then the words take over and sometimes, I end up some other place. Mostly when it comes to music.

I discovered VU/Lou Reed because I read about them in biographies about Bowie. With VU I started at the beginning and worked my way through to the end. Then I started on Lou Reed and John Cale at the same time – Nico was a later interest.

Between two Aprils, I lost two friends. Between two Aprils, Magic and Loss

I got to see Lou once in concert. It was for the Magic and Loss tour, at the Oslo Concert house. A truly magical experience and you could have heard a pin drop. Magic and loss has stayed with me, as a soundtrack, a guide, a raison d’être. It’s kept me going when life has been at it’s darkest and blackest.

Isn’t this something, you’d say, tomorrow I’m smoke¹

I liked Andy Warhol. Lou lead me to him. Andy was a weird creature. I’ve seen more of his films than most people I know. I absolutely LOVE Blood for Dracula especially his use of Wagner’s Tannhäuser. [fun fact: Wagner has featured on Dracula-soundtracks since 1931]. Valeria Solanas founded SCUM (the Society for Cutting Up Men), released the SCUM manifesto and shot Andy in 1968. He survived by sheer luck, but died of cancer of the gall bladder 20 years later. I’ve never read her manifesto.

Release me from the body
From this bulk that moves beside me
Let me leave this body far away
I’m sick of looking at me
I hate this painful body
That disease has slowly worn away¹

I can recommend Ultra Violet‘s biography. She was one of the important people in the Factory, and died from cancer in 2014. If you want to understand Andy Warhol – read the biographies of the Factory people. You’ll learn a lot.

Lou Reed passed in 2013 after a liver transplant.

John Cale is still alive and kicking. He and Lou released Songs for Drella in 1990.

Andy said a lot of things, I stored them all away in my head
Sometimes when I can’t decide what I should do
I think what would Andy have said²

I’ve seen Cale live once. It was at Rockefeller, him and a grand piano and tables and chairs and it was pretty much magic. That Welsh lilt…

I miss Lou and David and Andy. Not that I knew them in person, far from it, but they made the world a little bit better and colourful. And although David Bowie’s my main OST – Reed/Cale/VU lyrics have probably had a deeper personal impact for me.

¹All lyrics from Magic and Loss, 1992
² From “Work“, Songs for Drella, 1990

Wanna fund me?

Having breast cancer is expensive. I get the meds for ‘free’ but the additional costs – strict diet, anti-side effect meds, new clothes – aren’t exactly welcome since I’ve been on disability (and making less than the EU’s definition of poverty income) for the past two years.

So, I’m trying to make ends meet in other ways.

First choice is “climate quotas” – you buy one or more trees that can suck up the carbon that you’re releasing. You can read more here.

20 NOK = $2.50 = £2 (roughly)

I’ve planted a bunch of trees and you can own one or more. I’ll even tag them for you and you get to see how they grow.

And the price? Cheaper than in your local nursery! Cheaper than a pint of beer!

It’s easy, too. If you’re in Norway, you can Vipps 119276.

For Paypal or other options, use post@titsngiggles.org.

 

The Andy Warhol philosophy (aka don’t be Waldo Jeffers)

One of the most common things people ask me is if I’m worried about the treatment to come, with operation, chemo and radiation. I’m not. They ask if I’m worried about the future. I’m not. In their faces, I can sometimes see that they want to ask if I’m worried that I won’t survive this ordeal. If they had asked, I would have replied that I’m not.

I know that worrying won’t help a bit. It would most likely make everything a whole lot worse. I’m not in control of the cancer, or the treatment, or the future. Worrying causes stress, and stress makes everything worse, that I do know.

I call it the Andy Warhol philosophy. I’ve always been a fan of him, mostly cos of Velvet Underground. I’ve read many books about Warhol and The Factory, and one of my favourites is The Philosophy of Andy Warhol (From A to B and Back Again). My life has never been easy, but this tidbit of philosophy has helped me since I was a teenager:

“Sometimes people let the same problem make them miserable for years when they could just say, “So what.”
“My mother didn’t love me.” So what.
“My husband won’t ball me.” So what.
“I’m a success but I’m still alone.” So what.
I don’t know how I made it through all the years before I learned how to do that trick. It took a long time for me to learn it, but once you do, you never forget.”

Apparently, the “So what-therapy” is now called Metacognitive Therapy (MCT), and it works, say researchers (Norwegian article here). I could have told them that a long time ago. The ideas have been around for a while but Wells & Matthews (1996) used the information processing model that Wells later reworked into Metacognitive Therapy for Anxiety and Depression (2011).

I’m not claiming that it’s easy. You need to change your entire way of thinking, from worrying about the future to accepting fate at the same time as not believing in this thing called fate. There is a big difference between leaning back and thinking that “fate” will rule your world and accepting that there are some things in life that YOU cannot change.

I can’t control the outcome of my surgery, because I will be a passive pawn. I can, however, make sure that I’ve prepared physiologically as well as I can. I can’t control how my body will react to chemo but I can follow the advice of others: mostly low carb and light exercise.

And if everything still goes to shit and I don’t survive: So what. I won’t be around to worry about that.

Waldo Jeffers worried, and just see how much good it did him…

 

 

Don’t just make a statement – be one!

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!