Tuesday, November 29, 2016


Dealing with the cancer I had, is a four stage process.

Stage 1: surgery.  Done!
Stage 2: Four rounds of chemotherapy.  Done!
Stage 3: Fifteen zaps of radiation.
Stage 4: Ten years (yes, you read that right) of hormone treatment.

If you don't count the hormone treatment, I'm two thirds of the way through, with the worst of it over with.  If you do count the hormone treatment... I'm not sure!  I'm starting that in the next week or so, and I'm feeling a bit apprehensive about it.  The oncologists are fairly blase about it, but I've heard some fairly grim accounts about the side-effects from women who have been on it... so we shall see.

The most immediate side-effect will be that it will keep me in menopause, which the chemotherapy started.  It is what it is, and I'd rather go through an early and chemically-induced menopause than die of cancer, but I didn't like using the pill because I didn't like the idea of faffing about with my hormones; and I really don't like the idea of being on this stuff for 10yrs.  I'm sick of hot flushes already, and it's only been a few weeks!  Finding something that can help with menopause side-effects is going to be tricky, because most treatments for menopause issues involve either oestrogen or progesterone.  As these are the hormones that were feeding the cancer I had, and that the hormone treatment is suppressing, putting them back into my body is a very bad idea!  Unfortunately that leaves me with... pretty much nothing to help.  I talked to the oncologist about it, and she suggested using a fan.  I'm thinking that going by her empathy levels, she hasn't been through it yet!

Radiation is starting on 19 December.  Fabulous timing, right?!  The radiation oncologist (the shortened version of which is 'rad onc'... I told him he needed a better nickname.) wanted me to start treatment in early December, but I told him I wasn't available until 19 December.  He looked a little surprised about this and asked why, so I told him that I have four kids (he seemed quite horrified at the thought of so many children), I've missed half a year of their school events, and I'm NOT missing the last few weeks of prize-givings etc for radiation!  He mumbled a bit and did a few calculations, and agreed that I could wait till then.  I then mentioned that Christmas was at the end of that week, and with holidays and things they would probably be very busy, and wouldn't it be easier for everyone if I just started after the new year?  He was very decisive about the fact that no, that would not be a good idea at all, that waiting till the new year was pushing the timing out to far, and radiation WOULD be starting on 19 December.

Sigh... oh well, I tried!

So what does all of that mean?  I'm getting 15 zaps of radiation.  It happens in Palmerston North, and I have the option of either staying there, or traveling there and back each day (a group of my friends have told me they're happy to be my taxi if and when I require it).  Radiation happens every day, apart from weekends and statutory holidays - they said that's to give my body a chance to recover, but I think it's at least partly because they want the time off! - so it's going to take about four weeks.  The actual treatment should only take about 15 minutes each time, and doesn't hurt.  Oh, and it doesn't involve needles, yay!

I have been told to expect skin burning - like a bad sunburn - and tiredness that will last for weeks after radiation is finished.  But because everyone reacts differently, there's no knowing beforehand whether I'll just get slight burning, or whether my skin will break down and I'll need district nurses to change dressings etc (this was mentioned as a possibility), and whether I'll just feel a bit  tired for a few weeks, or be completely exhausted for months (also mentioned as a possibility!).  And then there's the fact that they try to angle the radiation so it won't hit my lungs or heart, but there's a chance that they might be affected too...

So yeah.  Radiation is not like chemotherapy, but I'm also aware that it may not be a walk in the park.

Oh, and did I mention that after having a mastectomy, I found lying on a table naked from the waist up with my arms above my head, with medical staff watching through a glass window while other medical staff talked above me, drew on me, tattooed me and took photographs of the end result (all so they can make sure that the radiation happens in the exact same place, every time) to be actually quite traumatic?

It didn't hurt much, physically... but I'm not looking forward to doing radiation.

Saturday, November 5, 2016

Hair today... gone tomorrow.

Chemo sucks.

Everything hurts or doesn't work properly, including my brain.

And then it almost wears off, I start feeling human again and noticing the rest of the world (until I notice the US presidential elections, and wish I hadn't...), and then it's time for my next cycle, and down I crash again!

It's hard.

Getting the chemotherapy is actually the easy bit.  Dealing with what happens as my body tries to cope with what's been thrown at it, is hard.

The most obvious side-effect is the hair loss.  My hair hasn't quite all gone yet, but what's left is very thin, and prickly.  When my hair was falling out, my scalp was really tender, and sore to touch, but that stage seems to have gone now, thank goodness!  So, now I have pretty much no hair.  It has really surprised me how cold my head gets - hair is obviously a very good insulator. I have to wear hats etc, because otherwise I get cold.  It does work quite well in reverse though - when I get hot flushes (another side effect), I can take my hat off and cool down pretty quickly!

As a woman, having no hair is pretty confronting.  It totally changes the way I look, and it totally changes the way people look at me.  I've never been particularly worried about how I look - I almost never wear make-up, and clothes shopping is something I only do out of necessity.  If something still fits and doesn't have holes in it, I don't see the point of throwing it out.  I've never thought of myself as beautiful, or been particularly bothered about how I look, and I'm much more interested in a person's opinions, character and story, than the brand of sunglasses or shoes they're wearing, or the car they drive.

So I honestly didn't think that I would be particularly phased by losing my hair.


Silly me.

What to do, when you have no hair and don't want to go bald in public? For the first while I decided I didn't care what I looked like, and went for comfort.  Cue the beanie!  Great for comfort and warmth, but rather lacking in style.  After several weeks of mostly beanie wearing, even I was starting to feel decidedly frumpy.  Not good!

I've also got some scarves, which work really well as turban-style head-covering.  However, I've discovered that wearing some things on my head gives me flash-backs to my brethren past - I wore silk scarves on my head when I was at church from the age of 3, and for the last few years I was in the brethren I was wearing a scarf the whole time unless I was home.  At school, going shopping, at work, at church: unless I was in a brethren home, I had a scarf on my head.

I haven't worn a scarf on my head since then.  I didn't think about it, until I was wearing a cap thingy, and was struck by how I kept pulling it down over my ears, and wondered why that feeling was so familiar, and why it was accompanied by a sense of dread... and then I realised.

Life in a cult: the gift that keeps on giving!  I'm slowly getting over the flash-backs... but it's just another thing to deal with.

I've got two friends who have been through chemotherapy in the last couple of years, who have loaned me their wigs.  This has been fantastic, because it's meant I've had a couple of different options available right from the start.  The wigs look amazingly natural, and I look very different with each of them.  I've had several people I know reasonably well, walk straight past me in the street because they didn't recognise me.  But... it's not my hair, I'm always worried whether they're sitting right or not, and they're a bit itchy and tight on my head.

It is nice, not having to bother with washing my hair, or brushing it, or trying to keep it out of my face, or getting haircuts... but I am REALLY looking forward to my hair starting to grow back in a few months time.  Not just because it turns out that I quite like my hair, but because it'll be a sign to me that I'm through the worst of this cancer crap, and that life - and my hair - is starting to return to normal.

In the meantime, there is one silver lining.  It's not only the hair on my head that isn't growing - I haven't had to shave my legs for a couple of months!