Saturday, March 4, 2017

I Am A Survivor, And I've Got The Sash To Prove It.

I've just had one of the more surreal experiences of my life.

Today was the annual Relay for Life, organised by the Cancer Society.  I had been asked if I would like to go, to participate in the first lap of the relay, which is walked by cancer survivors and their families.  I decided that, yes, I would like to do that, so today we made the long drive, and got to the sports park where it was being held.  My husband had to work, but was planning on meeting us there, so I got the kids sorted, and got us all over to the marquee where there was a little bit of shade (it was a beautiful, scorching late summer day), and drinks and snacks were being provided for survivors and their families.

The marquee was packed, and there wasn't anybody there that I recognised, so I found some spare chairs, sat the kids down, and texted my husband that we'd arrived.  Some kind girls brought orange juice over for the kids, and I was told to help myself to food off the tables, so despite having to edge in between people already sitting round all the tables, I did so.

That was awkward enough... but it was about to get quite bizarre.

We were sitting in a row, eating our snacks, when a man walked up to me and said, 'Hello Donna!  Do you recognise me?'  I looked at him for a moment, and he helpfully added, 'I'm your cousin.'  I looked again, and then I realised - he was my first cousin, whom I hadn't seen in 19 years, since I left the brethren!  As I glanced away from his face for a moment, the penny dropped.

There were quite a few adults, teenagers and youngish children all dressed the same, in smart dark blue outfits with red logos, and a ute nearby with the same logo on it.  The logo was RRT, which stood for Rapid Relief Team.  These were the people doing a great job of supplying the food and drink for survivors at the relay.  These people also all belong to the brethren, the cult I had been brought up in and left, many years ago.  I hadn't seen most of them since the day I left, and now here they were, all smiling at me (and whispering behind their hands when they thought I wasn't looking), and offering us food and drink.

Two others came up and introduced themselves - I couldn't talk to one of them because my phone rang - and it was such a surreal experience, seeing teenagers that I'd never seen before, but knowing exactly who they were because they looked just like their parents, who were teenagers the last time I saw them!

So.  There I was, sitting awkwardly in a row with my kids, not knowing any of the other survivors at any of the tables, and eating food I'd stolen (it felt like) from off the tables in front of other people, surrounded by members of the cult I had left 19 years ago.  One of the rules of the brethren is that they don't eat or drink with anyone who isn't a member... except that now they were quite happy to provide me, an ex-member (ex-members are regarded as the worst of all sinners) with food and drink.  In fact, they were quite insistent about giving us drinks, and my kids had to keep saying they didn't want any more drinks just yet.

At this point, my husband arrived, and now all of this had to be explained - several times, because the kids all wanted to know what was going on - while trying not to make it obvious to the milling brethren that we were talking about them.  A brethren lady who had been friends with my mum came over and said hello, and we chatted briefly, which was nice... but very odd.  The whole experience was very odd!

Eventually I saw a fellow survivor whom I recognised from the Look Good, Feel Better programme I'd been to, so I went and talked to her for a few minutes.  Her gorgeous four year old daughter bounced on her knee while she told me that she had been told she was going to die before next Christmas.  Her cancer had spread throughout her body, and the treatment she was having wasn't stopping it.  We talked for a while, and then it was time for the relay to start.

As I walked towards the starting line, holding my husband's hand and surrounded by a gaggle of kids, I started to laugh.  I was wearing a sash I'd been given, which said 'SURVIVOR', and I told my husband that when we got back from doing the survivors' lap, I was going to ask for another sash.  He looked surprised, and I explained that the representatives of both the things I've survived were there - the cult, and the cancer - and I wanted a sash for each of them.


We stood with the other cancer survivors, their families, and the families of people who had died from cancer, and I listened as the Lord's Prayer was said, a drumming group started playing and led us all round the track, and I walked.  Holding hands with my husband and one of my sons, my arm around another son, and my other two children huddled in close, we walked past the brethren group I used to belong to, and I smiled at them as they took photos of the parade of people streaming past them.

After the first lap, we watched as the real work of the relay began, and hundreds of people walked and ran round the track.  Eventually we left them to it, and walked out the gates.  Past the Cancer Society tents, past the brethren now busily setting up water stations for the relay participants and getting a bbq going, and out into the clear air and sunshine to get on with our day.

Thursday, February 16, 2017

Life's back to normal now, right?

It's been a while between posts... again.
I finished radiation on 9 January, 2017.  My husband and kids came with me for the last treatment, and afterwards we went to the food court and everyone bought whatever they wanted for lunch.  It was fun, I was glad to be done, and glad to be celebrating with my family.

Then we went home, my husband went back to work, and me and the kids had to survive the next three weeks of school holidays!  That was hard - I was tired, my skin hurt, it was hot and the kids were unsettled and wanting my attention, and I was struggling to keep up with them and just wanting to be on my own so my head and heart could start to process the last seven months of trauma.

The school holidays ended eventually, my daughter started high school, the boys went back to primary school, and I FINALLY got a few hours of the peace I'd been craving.

So... it's all done. I've survived cancer and the treatment, and now I can get on with my life, right?

Not exactly.

The last effects of chemo are still working their way out of my body.  The skin damage from radiation wasn't nearly as bad as I was told it could be (thank goodness for Mepitel, the wound dressing that protected my fragile skin), but the radiation zone is still discoloured and very sensitive.  And then there's the side effects from the tamoxifen!

The biggest problem are the hot flushes.  These are really unpleasant, and very disruptive to getting a sound sleep at night.  My feet and ankles have become really stiff and achy - if I've been sitting for more than ten minutes, I hobble like an old lady when I get up.  This seems to be getting worse, rather than better.  So now I've started on a blood pressure drug that is supposed to help calm both these side effects down.  I don't like taking yet another medication, but I could really do with some decent sleep.  I've only had the occasional good night's sleep since I started chemo, back in September, so I'm giving this a go.

There's more... but I'm not going to go into it all.  Suffice it to say that hormone treatment is not fun.

I don't really feel like myself yet.  I don't think I'll ever be the person I was before cancer - going through all of this has changed me.  I've lost parts of myself, physically and emotionally, and that's no small thing.  I am still grieving, and I don't know when that will change.  I'm craving quiet and peace.  Emotionally, I'm tired down to my bones.

There is a lot of joy, but there is also a lot of grief.  One does not cancel out the other.  I don't feel strong yet, but I've made many small steps towards becoming stronger.

A while back I said that going through all this is like an eclipse of the moon.  If I stick with this analogy, I'm coming out on the other side, the light is getting brighter, but the shadow isn't all gone yet.



Tuesday, November 29, 2016

Radiation

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.

Lol!

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!






Wednesday, September 21, 2016

Chemotherapy, Round 1

It's been two weeks since I had my first dose of chemotherapy, and it feels like the worst of the side-effects have mostly worn off.

It was pretty awful... but not as bad as it could have been.  I'll tell you more about it after the second round.

What I'm really struggling with at the moment, is the feeling that I'm on some kind of weird home detention.  Because the chemotherapy wipes out my immune system, I am very, VERY susceptible to other people's bugs, and what is just a cold for a friend, can become pneumonia for me very fast.  Which sounds ridiculously dramatic... but it's true.  When explorers came across a tribe that hadn't seen outsiders before, it was very common for much of the tribe to die from illnesses that the explorers were carriers of.  The tribe's immune systems had never been exposed to these viruses/bacteria before, and they had no way of fighting them off.  That's pretty much my position.  All my built-up immunity has been wiped out by the chemotherapy, and it's starting again from scratch!  And it has to start again from scratch after each round of chemotherapy.  So I have to stay away from people, particularly groups of people, as much as I can 

All of which means, if you have a cold or a tickly throat, or someone in your family has bugs, PLEASE don't come and visit me!  Please don't have my kids round to play if your family aren't all healthy, because my immune system has enough challenges going on at the moment, particularly with 4 kids in the house.

Moving on from the physical to the mental...

The chemotherapy process seems to be one of letting go.  I've had to let go of going to school assemblies, watching my kids in various different activities, growing a big vege garden, going to church, being a part of the community garden... and yesterday I had to let go of my hair.  Even the way I think is different - it's called chemo-brain.  My thinking is fuzzier, sometimes it's hard to find the right words, and every now and then it's like my brain fills up with fog, and I can't make decisions about anything, or even think coherently.

It's hard.  And scary.

I know that it's all temporary... but it's my reality right now, and will be for the next few months.

It feels like I'm in some weird kind of personal autumn.  I'm like a tree, watching so many of the things I love doing and so much of my physical being that I took for granted, just fall away, like leaves onto the ground.  And there's nothing I can do about it!  I can't hold on to these things tighter, I HAVE to let them go.  I have to surrender to this process, and let so much of what has brought meaning to my life, slip out of my hands. 

What makes it stranger, is feeling like this while it's spring outside.  Seeing new lambs, trees budding, bulbs flowering, everyone getting excited about what they're going to grow this season, the weather starting to warm up... while in my life, everything is slowing down and paring back to what seems like a long way short of the bare essentials.  I feel completely out of tune with life around me.

It often feels like I'm in that little patch of shadow, watching everyone else in the sun.




Sunday, September 4, 2016

Both And.

After almost a week of agonising, and trying to get second opinions (which proved to be impossible), I finally made the decision - I'm going to do chemo.

I immediately felt much better - I looked out the window and thought 'Oh wow, the sun's out and it's a beautiful day!'  I actually hadn't noticed until then.

So, I've made the decision, and I'm getting my first dose on Wednesday, 7 September.  I'm going to be having four lots of chemotherapy, about three weeks apart, if all goes well.  Nobody can tell me how I'll be afterwards - whether I'll be one of the lucky ones who sails through chemotherapy, only feeling a bit seedy for a few days; or whether I'll be one of the ones who is completely wiped out the whole time.  I'm obviously hoping for the first option!

So I've been trying to figure out how to keep all the plates of our family spinning, while having no idea how much help I'm going to need.  Which makes it a little tricky... there have been a few phone calls where I'm asking people if they can do such and such, if I need it.  And so far everyone has been very obliging!

One thing I do want to talk about is my positive attitude.

I do have a positive attitude, in that I'm doing my best to deal with whatever is thrown at me, the best that I can.  I'm doing #100happydays on Facebook, where I'm talking each day about the little or big things that make me happy.  And people seem to like that.

But the 'brave cancer fighter' label is a tricky one.  Because yes, I'm brave.  And yes, I'm fighting this.  And yes, I have a positive attitude.

But I am more stressed than I've been in years.  I cry a lot.  I'm still taking painkillers from my surgery 4.5weeks ago.  Little things like trying to decide what to wear, take a lot of emotional energy.  I often want to hide - to just be by myself - because my heart hurts about the way our lives have all changed.  We're having dinner conversations about the side effects of chemotherapy, and what I'll look like with no hair, and while that's good, and I'm glad we can talk about it with the kids, I HATE that my kids are having to think about this stuff, connected with their mum.  My head often feels like it's spinning, and I've learnt that deep breathing helps when my stomach hurts from stress.

This is what brave looks like too.

This is the other side of the 'positive attitude'.

If I was only ever upbeat and happy, that wouldn't be healthy.  And sometimes I worry that because I'm publicly focused on the positive, the other side of this might be forgotten.

The other side is, that this is one of the scariest times of my life; that it's so hard that my husband and I congratulate each other, every night, on making it through another day; that despite our reassurances, my kids are worried that I'm going to die; and that I really, really wish my biggest concern was that my seedlings were getting knocked over (like last year).

That's why this is titled 'Both And', rather than 'Either Or'.  Because life isn't one or the other, it's both at the same time.  That's what this is about - focusing on the positive, while still feeling scared.  Noticing the lovely, while wiping away tears.  Taking deep breaths to be calm for the kids, while knowing that the reason they're fighting so much is because they're scared too.

I see focusing on the positive as my act of defiance.  Regardless of the bad and scary and evil that is going on in the world, in my life and even in my own body, I WILL still see the good and beautiful and lovely in the world, and my life... and even my own body.


Both and. I acknowledge the dark is there, but I choose to focus on the light.



Wednesday, August 24, 2016

A Histology Report and a Minion

As it seems to be my habit to write blog posts just before something happens, here I go again!

We had our appointment last Thursday with the surgeon to get the histology results ('histology' means the study of cells and microscopic stuff), and as you may already be aware, it didn't go terribly well.  Not because of the results, but because of a registrar (junior doctor) who was standing in for the surgeon.  The registrar unfortunately had very little knowledge, and even less empathy.  I haven't been so angry for a very long time.  However, he eventually fled the room, and shall be ignored henceforth.  Be gone, minion!

The surgeon (probably summoned urgently by someone telling her the registrar had run away and there was a patient about to lose the plot) went through the histology report with us, and the results are mixed.

First up, the good news: I don't need any more surgery!  YAY!  There was a chance that they may not have been able to get enough of a border of healthy tissue around the tumours, which would have meant going back into surgery.  They got a clear margin, and I'm done with surgery.  Very, very happy about that!

Next, the not quite so good news: the lymph nodes they removed looked clear on first inspection.  However when they were thoroughly checked, one of them had a micro cancer in it.  When they talk about lymph nodes, they talk about micro and macro cancers.  This one was a micro cancer, which means it had only just got there, and hadn't gotten around to unpacking it's bags or meeting the neighbours yet.
Because it was so tiny, and the other lymph nodes they removed were all clear, they are going to leave the other lymph nodes in.  But because it was there at all, the necessity for me to have chemotherapy has gone up from about 10% to 50%.
The surgeon said that they are suggesting, rather than recommending, that I have chemo, and that they are leaving the decision up to me.

How nice!  The ones with all the years of training and experience and degrees and white coats, are going to let ME make the decision about whether I have chemo or not. 

Then they said that I'd have a meeting with the chemo guys in 2-3wks, so they could give me percentages and probabilities and statistics, and then I could make the decision.

Sigh... more waiting, which I was extremely unexcited about, but had finally mustered up a few more skerricks of patience, to wait, again.

Until this morning, when the phone rang.  It was the hospital, saying they had an appointment for me this afternoon, if I could make it!  After a minute of frantic mental calculations involving travel time and the logistics of 4 kids, I said yes, thank you very much!

So, I'm off this afternoon, to talk statistics and survival rates with the chemo guys. 

Preparations for Round Two are beginning.