Month: June 2017

Don’t be a rat, be a guinea pig!

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Clinical trials are important. All medication undergoes rigorous testing before it can be tested on humans. And all meds have to be tested on humans before being released on the open market. Testing is used to find out the meds’ efficacy  and side effects, and to compare these with existing meds. And if you’re very lucky – you might even get paid!

As you all know, I’ve been fortunate to be eligible for the PETREMAC-trial here in Norway. For me, it’s been a win-win situation: I’m on extremely efficient meds, I’m being examined from head to toe, and I’m not suffering from the worst side effects.

There are clinical trials in most countries regarding a plethora of diagnoses, illnesses, conditions and diseases, both physical and mental. If you have some sort of diagnosis and want to know if there is a clinical trial that you might be a part of, there’s a good chance there’s a web site where you can browse and search and read more!

In the four months I’ve had this blog, I’ve had readers from the following countries. It’s alphabetical and if I can find a directory over clinical trials in your area, I’ll list it here!

Disclaimer: I haven’t checked the sites, I’m not affiliated to any of the sites, I doubt if the list is complete, and you might not find anything for your diagnosis. But it might be a good place to start if you are interested! And you should always consult your GP/doc/specialist first. There might be risks involved. Norway has very strict guidelines when it comes to human test subjects – other countries might not.

There are also international directories where you can search for trials in your country: Centerwatch

Australia Australian Clinical Trials – ANZCTR Clinical Trials

 Canada Health Canada’s Clinical Trials Database – Clinical trials – Canadian Cancer Society

Denmark Clinical Trials Office Denmark

Finland Welcome Clinical Trials Finland – Clinical research – Finland Health

France ANSM

Germany German Clinical Trials Register – German Clinical Trials Register

Greece Clinical Trials | SFEE – EUREC – Information – Greece

Iceland Clinical Trials | Licences | Icelandic Medicines Agency

Ireland Clinical Trials in Ireland

Luxembourg Clinical and Epidemiological Investigations Center (CIEC) (they even have an International Clinical Trials’ Day)

Maldives N/A (clinical trials are not allowed in Maldives)

Netherlands Trial Register

Norway Helsenorge.no

Poland Clinical Trials in Central and Eastern Europe – Clinical Trials in Poland

Saudi Arabia Saudi Clinical Trial Registry

Slovakia Clinical Trials and research in Slovakia

Slovenia Clinical Trials – Clinical Trials and research in Slovenia

South Korea South Korea: A Top Clinical Trial Destination – CRIS

Spain Agencia Española de Medicamentos y Productos Sanitarios – AEMPS – EUREC – Information – Spain

Sweden Clinical trials in Sweden – Link Medical Research

Switzerland Clinical trials – Swissmedic

Trinidad & Tobago Find Paid Clinical Trials in Trinidad and Tobago – NIHERST | Home

Ukraine GCT – Clinical trials

United Kingdom Covance – Clinical Trials Gateway

United States Clinical trials

 

 

Muzak I

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The cat who swallowed the canary. I think I copied this grin on Wednesday.

 

I went to see Ministry last Wednesday. They played at Rockefeller Music Hall in Oslo, and I think this was the 5th time I saw them. First time was at the Quart festival in Kristiansand in ’96 (and no, that was just a couple of years ago, and OMFG the gig on Wednesday was probably as hardcore and gooey and awesome as the first time I saw them).

 

My attitude towards cancer: f**k you, you chose the wrong chick to mess with!

 

 

 

 

Music has always been important to me, although I will be the first to admit that I’m not very impressed with contemporary music and I’m perfectly happy with the bands I’ve listened to ‘forever’. Since 2001 (still not doing any maths here) the newest band I’ve seen is probably Alice In Chains (1987) and the oldest Judas Priest (1969).

[btw if you ever get a chance to see Priest live, Rob Halford is king. He was in his early 60s when I saw them, and his energy – he was up and down that stage for almost three full hours. Respect!]

I meant to do a “music I listen to now” then I found the canary pic of Al and it made me so happy cos Ministry is the perfect way to empty your mind of all thoughts and just float away in gooooey industrial land. I was going to write more, but it kinda went missing cos I got busy youtubing.

Even my new car likes Ministry.

 

 

 

 

 

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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2

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!]