Wednesday, March 2, 2016

The Once and Future Queen

Stuff happens in people's lives some of it good some of it less than good. I'll be talking about the bad stuff today, but I don't want people to think it's all doom and despair, I've had a plenty good road.

I was born, a tiny little thing, on Christmas Day in 1970. Since then quite a lot has happened to me. Many people have said an unreasonable amount of it was bad, but I think my daughter more than makes up for it - since she was born the scales are tipped forever in my favour.

The bad are a little series of stepping stones towards today.

When I was 9 my Mother died of cancer, after a horrible battle with it. FUCK CANCER.

When I was 14 my Dad had his first heart attack. It wasn't long after that that he had double bypass surgery. When I was about 20 he developed cancer, and against all odds (seriously his odds were terrible) he survived. FUCK CANCER. Then when I was 25 he died of nothing.

Kitty was born the following year in an emergency c-section. The whole experience sounds horrible. I only remember the good bits and the funny bits. We're both alive, that's pretty good under the circumstances.

Since I was about 20 I had a lot of random things wrong with me, they niggled at me but seemed to be unconnected and un-serious so I didn't worry too much about them. But over time they got more annoying & harder to ignore. And I started having trouble sleeping, which just wrecked me. Chronic sleeplessness is a total dog. The situation became steadily worse. Eventually, around age 30, I was diagnosed with Fibromyalgia. It's a pretty shit condition, if you don't know about it, look it up - you probably know someone who has it.

Roll forward a bit, because while the Fibro isn't going anywhere it's also super boring. A couple of years ago I started experiencing new symptoms. That while they COULD have been my Fibro being weird and throwing new things at me, I was absolutely convinced were not. It started with a cold. The cold definitely wasn't the Fibro :) 

I got a cold and it turned absolutely unbelievably vicious. It felt like someone was leaning on the left side of my chest. I could hardly breathe. Coughing was killing me. It went on for months, and it never entirely got better. Eventually the cold went away, but the left side of my chest still feels like someone is pressing on it. I've been incredibly careful not to catch any more colds. After the cold went away my doctor totally lost interest in it. "Probably just Fibro". Everything is, right? 

Shortly after that I started losing feeling in my left arm. My thumb, index and middle fingers are all pain, no feeling. I can't tell what they are up to, if I touch things, I feel the increased pressure as increased pain but I have no idea what other things might be going on. I can still use the hand, sort of. I'm typing with it right now - but I don't touch type with it anymore. The right hand is touch typing, the left is being watched and told where the keys are. I watch the finger lower to make sure it's in the right place. When I cook I have to be careful with blades and heat. Particularly heat, I don't notice it burning until it's far far too late. By looking, and going "shit, that's probably burning". 

The rest of my arm is slowly but surely disappearing. Figuratively and literally, as I'm experiencing tissue wasting too. 

It took a ridiculously long time for my GP to finally refer me to someone, and I'm fairly sure he only did because he was bored with me whining about it. Because it's "probably just Fibro". The first specialist was a Musculo-Skeletal guy. He was great. Full examination, TOTALLY NOT FIBROMYALGIA. He ordered an MRI, which was a bit inconclusive but confirmed his suspicion that something was going on in the Brachial Plexus region, with the C6 nerve. Not his department. So he moved me forward to Neurology. (Hilariously this is what I expected right from the beginning, but something something, pathways something, boring). 

The Neurologist is also great. He was very thorough in his note taking and going over my whole entire body looking for anything out of place. Anything else that might be a neurological symptom and narrow done the possibilities. He ordered a detailed MRI in the bigger, funkier machine at the main hospital. 

Some people are scared of the MRI machine, some people are just uncomfortable. If it wasn't so bloody noisy, I could fall asleep in there. The new MRI shows a *something* in the C6 nerve root, which we are calling a Nerve Sheath Neoplasm. Which is Doctor speak for something on the nerve that shouldn't be there. They'll find out what by taking it out most likely.

But now things get messy.

Because I was lying in bed, contemplating my shiney new appointment to see a Neurosurgical Consultant to talk about cutting me open when, my arm brushed my chest and it didn't feel right. So, shaking like a leaf I checked my boobs, Lefty is mysteriously fine, what with all the other left side bollocks going on. Righty. Righty is not fine. Righty has a FUCK OFF enormous lump. I freaked the fuck out, and (this is where you all laugh at me) checked the internet to see how much panic was required. Calmed down a bit. Because for the first time in the history of humans looking up health stuff on the internet, it was actually useful. Then called my clinic, where one of the lovely nurses said yes it was totally understandable that I wanted to be seen right the fuck now. And got me to come in immediately. Where I was duly felt up by several people. And a mammogram referral was sent away. Breast Care NZ called me the following day, because apparently there is a section of the public health service that can find it's ass with both hands. I went in for just a mammogram. I came out with a mammogram, an ultrasound which I am sadly talented enough to read (so I already knew it was *not good*) and an urgent biopsy. Urgent in front of biopsy is probably not a combination of words I need to hear ever again. The results were in very very fast indeed, and I have an Invasive Ductal Carcinoma. A big one. It only remains to play count the number of nodes that it's playing with (zero would be good) and see if any other organs are involved (no would be good) and see if I might be Hormone Receptor positive (yes would be good). So the tumour lottery is not yet over. But a lot of the good answers are out of the game. I HAVE CANCER. FUCK CANCER.

The doctor performing the biopsy, thinks the MRI's and also a ultrasound done on my thyroid a while back should be looked at again with this diagnosis in mind. This is not good. I would like them not to be connected in any way.

My GP is probably trying to find a way that it could be "just Fibro" he's certainly still trying to water down the potential seriousness. I'm ignoring the crap out of him and talking to the specialists instead. 

I called my clinic. To find out who I had been referred to, what other referrals might be needed and what else I needed to do. "I'll find out, and call you back. If I haven't called back by 2pm call us again".... 2.30pm I call them again. My nurse is on the phone to some other poor soul. There's nothing in my notes (surprise, my doctor is the worst note taker) so the other nurses can't even find out for me... never mind I say, just get her to call me when she's off the phone. Of course they will. NOPE. So the following morning I call again. I've been referred to surgical (apparently some special Breast Cancer department I was totally unaware of before exists for this kind of thing) but they don't need to refer me to Oncology yet, these super folk in the covert breast cancer department will if it comes to that. I am now picturing Breast Cancer nurses dressed in black suits, with bluetooth headsets and dark glasses. Because at 45 years of age I'm still pretty much 12. 

Later that morning, my GP calls, all full of apologies for not getting back to me earlier. I wasn't really expecting him too, I am aware of the combination of his slightly useless nature and well overbooked schedule. Turns out I'd probably rather he hadn't called anyway. Because he either hasn't properly read the information or thinks I'm an idiot (that's not fair, less clever than I am is probably more accurate - I am that level of obnoxiously clever that makes many people want to barf). He's trying to reassure me with platitudes and telling me things I know aren't accurate. Then he tells me if the hospital hasn't got back to me in a week I should call him back to get him to hurry them along. A WEEK. Are you fucking actual kidding me here?? A WEEK???? I am literally unable to say to him how ridiculous this is to me, and file it away under, don't bother I'll just hassle the hospital directly.

The hospital calls that evening. A very nice nurse explains that the consultant needs to look at the file and decide what needs to be done, that will happen this evening and she'll get back to me in the morning. I mention the cowboy'd up axilla biopsy and that it will probably need to be redone, and she puts that at the top of the list of things to check with the consultant. SHE JUST CALLED SO I WOULDN'T SPEND ANOTHER EVENING WORRYING THAT NOTHING WAS HAPPENING. 

She calls back in the morning, exactly like she said she would. This morning. She confirms that I was dead right and the first thing to do is get the axilla node biopsy repeated. So they have put a referral through to Breast Care NZ at St Georges to get that organised.

Rather than wait, I called Breast Care NZ to see if I could shake things up. They will call me the moment they have the referral on their desk (fucking hospital systems, referrals take forever to get where they are going - what even is that in this day and age??).

So back to waiting, but hopefully not for very long.

Then the discussion on how much of me we're going to need to cut off. There will be no discussion regarding boobs. Screw lumpectomy. Screw single mastectomy. CUT THEM BOTH OFF. JUST DO IT. I'M NOT KIDDING. 

The discussion will be around lymph nodes, and whether there has been further spread we need to twist our knickers over. My knickers are already pretty twisted frankly.

I HAVE CANCER. FUCK CANCER.

Peace. Out.

PS A friend has begun a fundraiser to help with medical costs, and perhaps some fun. If you have something to spare lovely, if not also fine.

https://givealittle.co.nz/cause/helpdianabattlebreastcancer/donations

2 comments:

  1. For the record, our father had his first heart attack about 3 months after our mother died and was in and out of hospital for the next 4 years being inadequately treated by you guessed it, his local GP. When the GP finally referred him to the hospital they were surprised that he was alive at all his arteries were so clogged up. His GP should have escalated it years before... I am very pleased to hear that you are pushing it with all your specialists etc because my experience is that if you don't things don't happen fast enough. I don't know if you remember the 3/4 hour telephone conversation I had with his doctors from Australia when I was 6 months pregnant with his first grandchild. That was at a time when calls from Australia were expensive!!
    I know it is tough at the moment, but please keep pushing because that is the only way to keep things moving at an appropriate speed. Let me know if I can do anything from Australia. Love Cathy

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    1. I don't remember the majority of my childhood. Literally. And then I have memory issues from Fibromyalgia in my adulthood.
      I'm not all that excited about how little I can accurately remember.

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