Thursday, August 27, 2015

DCIS, fibromyalgia, radiotherapy part 2

Here I am, I've completed 13 days of radiotherapy. Halfway done (spread over 3 weeks)!

I've managed to keep my jobs going along. One is a day a week in an office, so the past couple of Mondays I've driven from work to the hospital to have radiotherapy straight after work (so as not to have to lose work time). That's been OK, but those are long days. The other part-time job is more of a do it when I can job, so that's what I've been doing and I'm happy to say I've kept up with it.

It is SO lovely not to be doing my PhD and NOT FEELING GUILTY! I have ignored my PhD completely. Which is fine because I flipped it to part-time and now my submission date is mid-2017 (I can flip it back to full-time any time I want).

As for the radiotherapy itself, the rays are imperceptible. But the effect of them on my skin is not imperceptible. I have a reddened square of skin starting under my collarbone and extending 2 ribs down beneath my b00b, sideways it goes from my midline to my armpit. The skin is very sensitive and I haven't been able to wear a bra for the past week. By about day 7 all constricting tops or anything that rubbed on the skin was out. Thank goodness I've got little b00bs (never thought I'd say that!).

 Unfortunately, I am in a fibro flare. Lots of my body hurts, most of my joints and especially my back ... but no back spasms - hooray! Days 2 and 3 were strangely awful because my muscles were specifically protesting the weird position I'm in. Left arm tucked down beside my body, hand under my thigh to keep the arm still, a little splayed away from my body so the side dots* line up. My right arm is crooked like a body-builders but my hand is clenching a round "donut" so I don't have to reach all the way back to the handles abovebehind my head and there's a wedge under my elbow to balance my arm. It's better than having my right arm fully extended out abovebehind my head, but not by much. I've taken 2 Panadeine Forte (and an antihistamine to stop the itchiness that I'd developed) before half of the sessions. I tried a few other combos, but short of knocking me unconscious it appears impossible to relax my neck/shoulders completely. So I'm muddling through with prophylactic pain relief.

I'm not sure if I've been fatigued from the radio, because I'm always tired. But I don't seem to be more tired than usual. I have naps a couple of days a week.

So there we have it.

Friday, July 24, 2015

DCIS (Stage 0 breast cancer), fibromyalgia and treatment

So I had a sore and swollen left b00b and I went and saw my GP at the end of April.

He recommended a mammogram to suss out Lefty.

Lefty was fine, but Righty had a thing. Some calcifications. Suspicious ones.

Multiple doctors visits ensued. A stereotactic breast biopsy was ordered. That means getting a needle and sticking it into my b00b while said b00b is squashed in a mammogram machine.

Pro-tip #1 for people with fibromyalgia who have to get a stereotactic breast biopsy, get it done upright. I tried to do the face-down-b00b-through-a-hole stereotactic table but couldn't turn my head to the side and stay still on that hard surface.

I took analgesics and a muscle relaxant to try and stop my neck/shoulder from seizing up during the biopsy. I didn't seize up, but the local anaesthetic injection hurt like my b00b was on fire.

Biopsy results came back with the 3rd best breast cancer diagnosis you can have - high grade DCIS with comedo and solid pattern.

Stage 0 non-invasive breast cancer (the best diagnosis would have been low grade). DCIS stands for Ductus Carcinoma in Situ - atypical cells that are multiplying fast (2 of the cancer criteria) but stuck in a duct (so missing the 3rd thing needed for it to be more worrying - no invasion).

Current clinical guidelines for treatment of high-grade DCIS in a young (relatively-speaking) woman is to perform a lumpectomy and follow it up with 25 doses of radiotherapy.

Wait, what?

Hang on. What The Fuck? Surgery and radiotherapy?

I have two part-time jobs and am in the write-up year of my PhD. Ain't nobody got time for this on top of that.

10 days after diagnosis I had surgery (30th June) and now I have a smaller right breast and a hard lump at the surgery site (a seroma). Surgery happened fast.

They got it all out and no invasive cancer was detected alongside the DCIS (which sometimes happens).

Recovery from the operation involved 9 days of complete non-functionality. The we discovered I was having a bad reaction to the low-dose amitriptyline I was put on after the surgeon told me I had to stop HRT. My brain turned back on on Thursday the 16th June. That was a momentous day - I could think again, talk correctly and I stayed awake all day. Imagine that!

I had to stop HRT because >70% of breast cancers are hormone driven.

Welcome back menopause symptoms, you suck arse and you're not welcome. I'm hot flushing all over the place, my emotions are labile and my sleep is increasingly craptastic. The low-dose amitriptyline was helping my sleep but it was also making into a zombie who couldn't think straight, or even talk proper-like during the day.

B00b appears to have some cording from n1pple to rib cage (my surgeon went in via the 6 o'clock to 12 o'clock line of areola-meets-normal skin). My b00bs are giving off a Marty Feldman vibe if you get my drift. Am going to see a physiotherapist who specialises in breast cancer patients.

Yesterday I had my first appointment with the radiation oncologist and she said she's treated patients with fibromyalgia before. Fatigue is a common side-effect of radiotherapy - I should expect it. Plus site tenderness (which is my whole fucking b00b).

Today. I went into the radiation planning session. I have to hold my right arm above my head to get it out of the way of the b00b (that's what everyone has to do apparently).

Pro-tip #2 ask if you can keep your other arm down, you can if they can still tattoo the dots above your arm-meets-body line.

I took a shitload of painkillers and a muscle relaxant and still, holding my arm over behind my head hurt a heap and I feel like a spasm is coming on. I'm on a 5 weeks, 5 days a week radiation schedule starting August 5th.

I've googled fibromyalgia and radiotherapy but there's not much out there.

I'll see if I can keep track of how I'm feeling.

I am not dying of cancer so that's great obviously. But my treatment is the same as if I had Stage 1 cancer with no lymph node involvement. I get to miss out on chemotherapy which is a giant fucking YAY.

But still I have now spent months worrying about the b00b and now I'm in treatment and I'm sad that this is going on for me now. I hate this portion of my life and my eyes are sore from crying.

So, yeah. That's what happening for me at the moment.

Friday, May 22, 2015

Hippo Birdie Two Mee and Facebook woes

So far today more than 70 people have said Happy Birthday to me. Mostly on Facebook. I'm 43 today. I hate 43. It's an ugly number, a prime (I don't hate primes on principle, 2 is quite nice) but this is an asymmetrical pointy blobby yucky coloured number.

This morning I woke up crying from a bad realistic nightmare about being unlikeable and it's been hard to shake the sad feeling. I'm not sure about my likeability, I know I was difficult as a teen and I know I was astray in my 20s. I don't think I did friendship very well in any of those times.

Then when I hooked up with the Little Guy's father he didn't like me having relationships outside of ours, so I gradually had none. Three friends from my youth still see me and love me in real life. Tens of people I was in friendship circles with have either added me or acepted my adds on Facebook and lately I am torn between hating that and liking it.

So this dream...I went out for a meal with a girl I was friendly with at school - same groups and all that. And at the end of our time together, she told me that although I'd changed, I still wasn't really likeable and she didn't want to be friends. I started crying in my dream and woke up sobbing in bed. The Big Guy was in the shower and my little-not-so-little darling Guy heard my sobbing, my gut-wrenching cries and came to comfort me. He climbed onto my bed and cuddled me and then when I didn't calm at once he went to get his step-father who dried off and came in. The two of them lay either side of me cuddling me while I sobbed and snuffled and tried to calm down. They reminded me it was just a dream and not real. After a while I stopped crying and they said Happy Birthday to me. Which brought forth more sobs.

I'm torn with Facebook. I have friends now, people I connect with both on and off FB, but there's a stack of people who live in my city, who I used to be close to but who I think would really prefer never to interact with me in the flesh - even if they 'like' my posts or photos, or make encouraging comments or congratulatory ones or even commiserating ones. Are they friends? I don't have hundreds of people friended to me in there, but this group of old school friends does me in.

Should I unfriend them? It feels like a Thing. A Big Thing, to do that.

I could send a message perhaps?
"I know we're FB 'friends' but I don't get any sense you'd ever like to have more to do with me than that, so why are we bothering to be acquaintances who share lives. I'm unfriending you, not because I don't like you but because I'm not sure you actually like me. If you decide you'd like me in your life you can add me back."
But that also feels like a Thing. An attention seeking thing?

I really don't know what to do but I do know I'm disturbed by the 'friend' level FB affords.

Monday, February 2, 2015

Hello 2015

Hello you out there.

Little update?

Kids = well.

Husband = awesome.

PhD = freak-out - submission by the end of the year.

Work = busy.

Health = hormone-replacement therapy is the bomb! All hormonally-related issues are rectified with magic pills. (Hooray for science!). Other health, not so great. Am presently wearing a Holter monitor for 24 hours to see if we can catch my stupid heart palpitations in action and assess their cause etc.  Back/neck, been cruddy for a month of so, but not so in spasm that I can't move.

Travel = YEAH BABY! We spent a lovely Christmas in New York (a fortnight there), a few days in LA (OMG the shopping!), then came home collected the kids (you read that right, we went to the states sans kiddos - just TBG and my Mum and me) and went to Bali for a week to defrost and relax after busy USA.

Life is pretty OK Jose (as long as I don't think about the PhD too much).

Tuesday, September 16, 2014

So, post-menopause hey.

I wish post-menopause had some post in it. As in finished. Instead all that's finished are periods and baby-dreams.  But symptoms, oy veh, I have them coming out the wazoo. Literally.

Why is menopause education not included in general biology education. Seriously. We just went to the s.ex-ed class for tLG and there was no mention of the End of Days. Just that female fertility would run out in 30 years or so, like someone magically pushes a button and it's all OFF. Well, it's not and I am under-prepared for this.

My GP has put me on hormone replacement therapy.

DID YOU HEAR THAT? ME? I AM 42!!! HRT IS FOR OL' LADEEEZ. (PS, no offense intended for anyone older than me or on HRT.)

Apparently, it'll take 2 or 3 weeks to kick in, apparently. So in the meantime this is how it is.
Let me tell you what's in store, all you lovely ladies out there reading.

Night sweats and hot flushes/flashes (who the hell knows which terminology is correct).
Oh My Fucking DoG. I had read about this but absolutely nothing can prepare a perpetually cold person for the anti-joy of this internal infernal heat.  I actually thought to myself (pre-hot-flushes-actually-occurring) "Oh, maybe it would be nice to be hot".

No. It is not nice. In the space of a second, I transition from comfortable to OH MY GOD GET THESE CLOTHES OFF ME I AM DYING OF HEAT. In all seriousness. And at night it's worse, so I sleep in 45 minute stretches, punctuated by throwing off of all bedclothes and cooling too far. To say, I'm tired is an understatement.

Mmm, imagine PMS. Forever. I am doing a lot of time outs (sending myself to another room) and deep breathing.

You know where I mean. And it's not only my external should-be-moist membranes, it's dry deep inside. Like some kind of internal (infernal) Gobi.  I also experienced an overgrowth of healthy flora and had to bomb my body to control it all. Still too scared to try horizontal folk dancing with The Big Guy. Last 3 times were painful. Even with aids. Poor Big Guy is getting a rough deal out of this.

That'll do for now.

I'll keep you posted, I'm sure you're desperate to hear the next instalment.

PS. Some women do not experience many (or any) symptoms of menopause. They are lucky, and when my Mama told me she was one of them I wanted to poke her eyes out with a stick. Just sayin'.

Wednesday, September 10, 2014

"That's it; that's all she wrote"

Meaning: An articulation of a sudden and unforeseen end to one's hopes or plans.

But it wasn't unseen, nor unexpected. And yet.

My period is 2 weeks late but I'm not pregnant. Instead what I am is post-menopausal.

FSH = 90.6
Estrogen <44

They are the levels found in a person who no longer ovulates and will no longer menstruate.

I'm 42.

I knew it was coming, but I didn't REALLY know it. Not in my bones. Not in my heart. Certainly not in my hopes. But now there is no chance for the famous "just forget about it" baby.

My realm now is one of hot flashes, vag.inal atrophy, vag.inal dryness, irritability, mood swings, insomnia blah blah blah.

Fucking life is unfair so much of the time.

Thursday, March 27, 2014

Did Tough Mudder - not fit, can't run - WTF?

Hello all,

I did Tough Mudder on the weekend!

A TOUGH FUCKING MUDDER! 20km, 18 obstacles, tons of mud.

I'm not a fitness freak, I've got fibromyalgia, a neck/upper back that's inclined to seize up and arm muscles that alternate between strong and weak unexpectedly.  I don't like splinters or being rained on when I'm clothed.  Haha, why did I sign up for TM? Because it looked like awesome fun and I thought I'd be able to get into jogging.  

But ... I'm not a jogger! After signing up for TM, I started to do Couch-to-5K from September 2013, I managed to do 6 weeks of it and got to running 20 mins straight. But then I hurt both my knees (BOTH of them) and had to stop running. For good.

Here's how I managed on the day:
1. I had the most awesome team with me. 15 of us did it, varying ages (19-51) and levels of fitness.  All incredible people, incredibly helpful. We all agreed we'd do what we could, skip what we couldn't and have a blast getting muddy. We did that alright!

2. I wore long compression pants, a long sleeved compression top.  I carried a camelback full of water, pain killers and a lip balm. I wore the running shoes I was used to (they scrubbed up fine afterwards). I also wore a tight pair of these light gardening gloves (they have a textured grippy palm) and cut the fingertips off so water would drain out.  This was so I could grip the wooden obstacles without my killer fear of splinters!  They worked a treat and kept my hands warm to boot.  (It was totally freezing on the day. That was seriously the worst part, so cold my teeth chattered for many kilometres.)

3. I alternated between walking and jogging slowly. So I paced myself pretty well, by the end I was pretty much only walking, as was the rest of my team. But I could still walk! And climb! And jog a little!  Unlike two days later when walking was very painful :)

4. I took paracetamol half way through.

5. I skipped a few obstacles I knew would damage me. I'm looking at you Balls to the Wall, Funky Monkey, Leap of Faith, Just the Tip and Everest. (Our whole team skipped the latter two.) My upper shoulders/arms/neck can't take much so I was sensible. Plus I need my arms and neck to type my thesis, so I was pleased to do three quarters of the obstacles. And I managed ones I didn't think I could - like Hold your Wood and Glory Blades.

6. I didn't let anyone yank me by the arms to help me up, I accepted boosts wherever possible though.

7. I had so much fun! My favourite obstacles were the Ladder to Hell, Twinkle Toes, Mud Mile, Artic Enema (I was so hot at the start and it was the first obstacle - awesome to jump into cold water).  I did both the electricity shockers and all the rest of the course.

So, if you think you couldn't possible do Tough Mudder because you can't run, or are unfit, or have a bad back.  Actually, you might just be able to do it :) (I am not a doctor so don't take this as medical advice, it's just my personal experience.)