The C Word

26/10/2015

Some of you may wonder why I would watch a movie like I did on Friday, and then on Sunday watch on TV 'The C Word'.  I had never heard of Lisa Lynch and her blog.  Sure, I wanted to see how accurate the story writers got it.  That is until the end of the TV programme and found out hers was a true story.  

But I now have learnt a couple of things about me (again).

When I started writing my public post on Facebook, my real aim was to educate and share, help others.  I had had no close experience with breast cancer and it was a shock to learn the hard and fast way.  I have made contact with another lady recently diagnosed and it so reminds me of the information overload and having to make huge decisions in a matter of days.  We are all looking to make the right decision and, in my case, I stuck with the tried and true medical system in place.  I have not been disappointed in my decision.  In saying that, I am sure there is a lot more I can do to help myself.  Maybe I am in denial and thinking I'm okay, just carry on; maybe I just don't want to put in the effort because it takes effort and energy and I'm tired of it all.

Getting back to the writing though, so to write about my cancer life and share my experience, was what I wanted to do and was my 'public duty' or so I thought.  After watching 'The C Word', I suddenly realised that, in essence, this is how I process.  I need to write, whether I share it with the world or not is up for debate, but on the whole, my feedback from sharing has been positive and encouraging. I need to share to have a purpose (yes, Lisa Lynch used the same word 'purpose').

I am also looking for validation.  That my thoughts are okay; they are my new normal.  I need to help.  I need to share.  I need to have feedback.  I need to know I am worthy of sharing my story.  I really don't know about this 'everything happens for a reason' bullshit, though Wayne and I have both said 'what are we going to learn from this'.

A few points of difference between me and Lisa's story is her age.  She got breast cancer at 28 - yes, 28.  She was so young, and she came across as being in a loving relationship and having a happy life; she was just starting out.  

And the other thing was she called her cancer 'Bullshit'.  There's probably a few in my circle of cancer friends who know we regularly use a stronger word than that.  

And I get Lisa's anger.  I can only recall being seriously angry twice.  Second trip over to Rotorua for chemo and I was pissed off.  Wayne said, "Here, you drive, hon".  So foot to the floor and blasting 'Bodies hit the floor', I got that anger out.  The other time was my callback in January 2015 after my first mammogram saying the cancer was back.  I was just so pissed off.

Lisa cried tears on her couch, her husband holding her and Lisa saying "I can't believe it"...well ditto Lisa.  Thank God for my wonderful husband by my side.  I said to Wayne last night (he watched some of it, not all) that I had never seen him cry.  In explanation he said "You were never going to die, that's why".

Like Lisa, I still look for the 'right' way to feel about this disease, the 'right' face to show to the world. I will reiterate again that these last six months have been very harrowing on the mind and yet I still got through it, yes, with the help of a little white pill, but at least I got through.

Lisa Lynch had her 'Art of Happiness' to help her find joy again in her final months.  I have found something else.  When I was in the thick of chemo and we would drive back from Rotorua, a little groggy and sleepy, I had a fascination for cows.  I would often wake up from a snooze and inform Wayne "Look, cows on a hill.  I like cows".  I don't know if it is because of my chemo haze or what, but I still "like cows".  I really sit up and take notice when I see a cow.  Sub consciously there must be something in that.

Since staring up adult colouring in, I am also now fascinated with the different colours of green out there.  I walk around at lunch time observing leaves and plants so I can come back home at night and recreate in my book.

And then my longstanding passion to enable me to see beauty all around me is my 365 Project, where I take a photo a day and submit my daily photo to a website community.  This community of unknowns has been so so supportive beyond belief.  For complete strangers to encourage me and for me to be able share my Taupo life around the world and vice versa is just a delight.

So I acknowledge Lisa Lynch and her life and her story.  Yes, there is a big age difference between us; our stories are similar but different for obvious reasons. I'm glad Lisa got to share and help others and it gave her purpose.  I hope for the same.

Mental Alert

12/05/2015

I have been asked lately where is my blog, seems like some of you are missing my ramblings in the cancer world.  All I can really say is that this stretch is mentally challenging.  

Thanks to some time out at the beach, anti depressants, a wine now and again, and Luke and Christine being there for me when I spiral downward, this trip is harder.  The waiting...the when, the if, the uncertainty...all challenging and I'm not really that happy about it.  

Isn't it strange that given something physical, like physical treatment of chemo and radiation, that when it stops, it feels like the safety net has gone. The hormone pills are taken daily but who knows if they are doing their job.  So I've gained 3kg and I have spots, but I'm going to carry on with them.

It is now three months since I was told 'when not if' and it isn't any easier as I sit here today.  I spiral downwards when I'm alone or get over tired.  I'm waiting for that ache or something to appear.  My body feels odd, just odd, and I can't put my finger on it.  Is is psychosomatic or is something really occurring within my body...I'm anxious waiting.  Will there come a day when I'm not anxious and I can breathe a sigh of relief.

My mum has been really ill with septicaemia these last 10 days.  Sitting with her in hospital and watching her decline and then improve has been a roller coaster.  My sister Jan and husband Rob have been there every step of the way with Mum.  I am so grateful that they are there for her and have her best interests at heart.  And for Mum's grandchildren and great grandchild to visit gave her such a lift.

But I want my Mum, I want to be able to pick up the phone and tell her anything and everything.  I can't imagine her not being here.  At one point, when I was told this time round 'when not if', she said to be "We'll go together".  That's how Mum is.  She would do anything for her children.

So I get fatigued - yes I had a kip on the office floor last week - but I'm doing my best to earn a living, pay the bills and have a coffee out at the weekend.  Life is simple. It  has to be.  Thank goodness I can live vicariously with work stories through my headphones at work. 

I am being challenged spiritually.  It has waned somewhat and I don't know why.  But I'm not going to fret.  There are so many out there who are praying for me and others like me.  I think I am tired of trying so hard.

So that's it in a nutshell.  I'm still here, still working, sleeping, eating and driving Hazel with my foot to the floor.  So glad we got her when we did.  She is FUN.

Emotional Treatment

25/11/2014

I have wanted to put 'pen to paper' for a few weeks now but felt that once treatment had finished, I more or less closed the Facebook blog, thinking those of you who read my blog had seen me get through it and that was enough.

When I finished radiation on 3/11/2014 I was ready to get back to normality and naively thought I could get back into work and just put the past 10 months behind me.  What I found instead was that I was looking over my shoulder asking myself the question "What just happened these last 10 months"?

I headed off to work and did the first week full time only to feel like a little old lady by the weekend, spending a lot of it in bed sleeping.

This was not my expectation because I had gotten through treatment pretty good compared to so many others around me.  This wasn't  me, this wasn't how it was meant to go now. I'm done and dusted. Sure, I will feel a bit tired, but not like a truck has mowed me down.

So I headed to the cancer counsellor and cancer nurse for some answers/solutions.  The counsellor said "Andrea, you need to learn to breathe, just breathe".  So of course I did and thought wow, I can do more now and so I did.

Then my cancer nurse sent me literature on different ailments after treatment but nothing new there.  The pertinent one for me was how to manage fatigue which I thought I was doing.

So I proceeded to carry on full tit (excuse the pun) only to fall in a big heap at the weekend which honestly shocked me.  I didn't realise I could feel that tired.  Thankfully I had Jan, my sister, explain in plain language about how I had to slow down, how I wasn't being fair to my body or to the doctors who had taken care of me.  I also had Mum's nurturing to get me back on my feet.

Therefore I have come to the slow realisation I am going to have to adapt to 'me' time.  I am so good at giving out, that I don't know how to give to myself.  

This therefore is my new quest.  If I don't, I am worried the cancer will come back, so I have to give myself a fighting chance to keep those cancer cells from regenerating and that is what I intend to do - take a breath and take time out.

Really, this is a continuation of the treatment plan.  When I take a step back and acknowledge that the medical treatment it is over, I now have to undertake emotional treatment for me.  This part of the cancer experience is probably more emotional than I can express here and something I have to figure out for myself. I might share with you at some stage but for now I am going to do some reflecting on how this 'me' time is going to look.  

I welcome any ideas.

For the time being, Hazel is filled with gas and is ready and waiting, and the road stretches out before me...

Live in the moment

08/06/2014

As I sat down outside Whitcoulls to eat my lunch and watch the world go by, our local busker started playing and he sang straight to my heart strings; a good ole Ronan Keating number "When you say nothing at all", Van Morrison "Have I told you lately that I love you", Eric Clapton "You look wonderful tonight". It was a concert for one because no one else was sitting out in the cold.

A concert for one

It's about "living in the moment". I have read and heard that phrase in a few articles I have read this week as I try to lift myself up. Easy to say and I am finding harder to do as the energy levels go up and down.

When I first got diagnosed I know I did that - lived in the moment - everything took on a brighter, crisper meaning and I was reflective of all the love and kindness around me. Wayne and I are still overwhelmed how the kindness keeps on coming and my friends and family keep on giving.

This week my "living in the moment" was having my son home. We went to our favourite cafe, Coffee Plus, and Luke says "So Mum, how's life"? Love it! We talked about life, death, mortality, future dreams, love and faith, over coffee and cake. Nothing like a deep and meaningful moment created right there. It warms my heart to hear Luke speak with his words of wisdom, compassion, gentle spirit and hope. He has a lot to contribute to this world and with Christine by his side, they will make a difference in people's lives.

A reduction in pre meds had me wondering.
Note no wig - soon gave up and accepted
how I looked

I also had a visit from a dear friend who asked me "what is it like this cancer, what is treatment like, what's the future hold". When I started to answer I realised how much I have learnt and am learning about the cancer, the process, my reality and myself.

This week has been an "up" week in terms of treatment and I started to feel physically more like my old self. And then in crept the awareness that next week a new chemo treatment is starting (CMF). This is the lighter dose (my Pinot Gris) and it should be easier on my peripheral neuropathy (I have in my feet) - Dr Link promised me. I have treatment on Tuesday and then seven days later another dose with a two week gap.

I have to admit there is a bit of trepidation with the new regime, just because it is that, new. I am yet to find out if the rest will be administered the same.

Wayne made the observation to me this week that with each one I have reacted differently, both physically and emotionally, and on reflection he is right:

1. Pretty damn easy. Back at work the next day
2. Stopped drinking as taste buds went and nothing tasted right so didn't flush chemo out effectively hence tired, nauseous
3. Steroid high - hide the knives (still haven't found them so I must have done something with them)
4. Tired, over it, "stop all the clocks, cut off the telephone" - WH Auden

a dose of the munchies

The aftermath of chemo for me:

• is the nausea is like being pregnant so to combat that eat dry crackers little and often, gingernuts and ginger tea
• I feel like I have got a lump of concrete working its way down through my body for about five days - when it is "released" oh the relief!
• major stomach spasms which are like Braxton Hicks and I just have to wait for them to pass
• my nose has ulcers up inside (the hairs have gone) so nose is very tender
• steroids and sleep do not go well together

So off we go again - are you coming along for the ride?? Let's see what we make of this next process.

Acts of kindness and big thank yous this week - I am truly blessed:

• bus ticket for Luke
• The Eagles ticket
• Lunch out
• Cash to help create and reflect on a memory
• Friend visit and chocolate cake
• Friend visit and something "yellow"
• Cousin - dinner at Siam Thai and a pretty pink cyclamen

Living in the moment and watching fishermen
spending time with Wayne and being close to water