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.

Bone Scan

08/06/2015

Today I had a bone scan using Nuclear Medicine at Waikato Hospital. In scans using nuclear medicine, you’re injected with a radioactive substance. This collects in certain parts of your body – for example, cancerous cells or your bones.  Once I had the injection, I was sent away for 3 hours.  I could eat, drink, drive, whatever in that time.  It didn't affect me.

The radioactive substance releases gamma rays. A special ‘gamma camera’ can take a picture of the gamma rays. This lets the doctor see where the radiation is in your body. So if you’re having a scan for cancer, the doctor can see where the cancerous cells are.  Sometimes doctors may use nuclear medicine and x-rays together. This gives them a picture of your body’s structure overlaid with the gamma ray image.

On return I had a full body scan, a scan of the chest area and a scan of the lower back.  This took about an hour and a half.  Results will be a week away as the specialist is away for a week.

Wayne and Luke came with me which was a great comfort.  We also got to call in on Mum who is looking so much better which was a relief to see.

So, did I get a feel for what the results might be? Yes and no, but I'm not going to second guess.  If all clear, that box is ticked; if an issue, then I will carry on fighting the disease the best I can. What will be, will be...

Mental Fatigue

06/06/2015

On Monday I go for a bone scan.  I have a few aches and pains they want to check out.  This is an early scan as I wasn't due till July so in some ways it's good, and in other ways it's scary.  But then I think I can tick the box if it all comes back clear.  Hormone meds play havoc with your body and side effects can be aches and pains so I'm guessing this is what is happening and I'm not expecting any surprises.

I have been very fortunate to be seeing a trauma psychologist through work.  It's something we are encouraged to do.  After the recent homicide, I found it was playing on my mind so it was good to go and "talk the talk".

Of course, what I didn't realise was all this other "stuff" that is going on.  

My mum has been really sick and as a family, we are struggling to see this amazing 87 year old suddenly be her age in just a matter of weeks. Mum has had amazing support from my sister and her husband.  It is a true blessing that they are there.  I hate to think of all those lonely people out there ailing who don't have a family to support them.

And then there's the cancer cloud hanging over my head.  When I'm at work I'm fine. I can get engrossed in my work, and laugh and work hard to support my crew.  But when I walk away, I sense a dark spiral sucking me in.  Anti depressants are great because they don't let me hit the bottom of the pit, but they also take off the euphoria high.  I really don't think I could function without them at this time, they're  just keeping me in the game.

And of course the discussion about assisted dying has been in the news and that sets one thinking as well, and what I would do in the same situation.

I am still struggling to show my vulnerability.  I am now hiding it from Wayne. I don't want to bother him.  He is so happy in his job and his music, I hesitate to share and yet he is the true one who "gets it".

Having Luke and Christine around is awesome.  I worry for them that they will get jobs and be happy here.  They push my buttons at times, trying to get me to open up.  They are so brave and compassionate towards me in encouraging me to let the mask down.

Great to see my other cancer buddies are doing so well.  Some big achievements all round.  Awesome work you ladies, you know who you are.

So the mental game is still being played out.  This, to me, is harder than what I went through last year, or do I have short memory. 

Mind is a battle field

11/4/2015

I am writing this today in two minds whether to or not.  It's been a hard month and I have pushed a lot of people away (for which I apologise) but I had to sort out stuff in my head.

I was struggling how to write what is going on for me at the moment but I came across an article by a woman, stage 4 terminal breast cancer, who put it so succinctly of how it is to be at her stage. 

I am not at that stage (and may never be), but I related to it so much that I am going to put it out there, with a few minor alterations/deletions, with the hope that it helps others going through whatever illness/drama they are dealing with today.  It is a case of going one day at a time, and if that is too hard, then an hour at a time - just like Martin Crowe (NZ cricketer) said recently.  

So I take no credit for the words below in quotes.  This brave lady is saying it for me.  So here goes...

"I'm not even sure what’s going on around me as my mind has gone all higgledy from anxiety. What I do know is the oncologist told me they have done everything medically possible for me, now it is a case of controlling the cancer when, not if, it returns. 

Since my visit to the oncologist a few weeks ago, I have been kind of 'grieving' I guess. I have shed many tears alone and in secret. When I look at my loved ones I get this giant sob in my heart, it's huge. I want to touch them all the time and tell them I love them. I look at them, trying to take them in and seal their faces in the memory bank of my soul. The anxiety of being separated from them mortifies me and breaks my heart. 

Then, there are these massive moments of panic,  where it feels like electricity shooting through my body and I shake my head and say “no no no, not yet, please not yet”!! I'm scared! 

I'm devastated and, to be honest, I just don't know how to deal with this, I don't know how to get my head around it all! 

There have been many ups and downs along the way with this breast cancer journey of mine and I have maintained a positive outlook mostly.   But right now I don't feel so positive! The reality of all this is too much to bear! I have to be positive!! Negativity is not an option! I know the battlefield is in my mind. It’s a fight to be realistic but to not dwell on the negative thoughts.    Balancing positivity with what you hear from the specialists and trying to maintain some kind of peace can be quite a challenge. 

For me to remain positive is to acknowledge my fears and accept them, to not condemn myself when I do freak, to take one step at a time and enjoy and appreciate the smaller things in life that each day brings!!   As the old hymn goes...One day at a time sweet Jesus!"

Right now work and home is what brings me normality.  What a joy it is to work alongside a young expectant mum and see the life in her.  Always a smiley cheery face and so much hope, well I can't help but feed off that.  So thank you Casey for making my days at work filled with hope and laughter.

My skinny dipping bosom buddy Tania and I are still chuckling over our antics and more, and the freedom we are feeling right now.

I attended a funeral this week and as I approached my prayer warrior who had lost her husband, she hugged me and said "You brave lady.  You are in my prayers every night". Now this was so humbling.  To have her say that, in her time of sadness, was pure gold.  Bless you Mary.

And I have decided to stop complaining.  People ask how I am and I say "I'm  good thanks".  And it's true.  I am good. I'm not in a hospital bed.  

So I'm putting one foot in front of the other.  I have to suck it up and believe it, and I'm taking it day by day, or hour by hour.

Under Presure

16/3/2015

It's important on this cancer road for me to process what I have been told by the medical people about my future prognosis and how to make it fit into my life today to somewhere I am comfortable with and to keep moving forward.  It's not an easy process and I don't know if this is just the way I deal with it or if others with cancer have done the same.  But for me it is a process.

When I was sitting in the consult room and they were telling me the good and the not so good, I came away feeling like I had all this information about myself but couldn't quite believe they were talking about me. I have found it is much better to go to a consult with another person because once I have got fixated on a bad piece of news, I tend to only pick up snippets of the rest of the consult.  Thankfully I haven't had to do this alone many times.

I then had to pass this information on to loved ones, without being the bearer of doom and gloom, but of hope and possibilities.  

I then told my Facebook friends.  The feedback was overwhelming and uplifting to say the least.  As I have said before, writing is cathartic for me, and it is with every good intention that I will be able to enlighten others to the realities of an experience with cancer; others won't have the same thoughts or experience, and that is why I stress this is just my take on this whole drama that has unfolded over the last 15 months - yes, 15 months. I'm can't believe that this has consumed us for that long.

And it is a drama; the body psychologically and chemically waits for the next diagnosis and it goes into overdrive with adrenalin in how to deal with it, sometimes making the picture worse than what it is; sometimes not understanding that it is actually worse than what it is.  

While I was at the beach, I had time to think and process.  Some would say keep busy, then you don't think, and that has worked in the past, but right now I'm physically tired; I don't have the 'get up and go' to busy myself through this.  

What I now realise is I am feeling intense internal pressure.  My head feels like it wants to burst. So instead of downing another Panadol, I tried to work out what was going on and instead I drew a mind map and came up with this list.  I must add no one has put this pressure on me, but myself.  For example:

I feel pressured to stay alive

I feel pressured to be a wife/lover

I feel pressured to be the mum who is always there to nurture

I feel pressured to protect my loved ones around me

I feel pressured to be at work and perform to my high standard

I feel pressured to eat right

I feel pressured to provide comfort

I feel pressured to put on a brave face and keep on smiling come what may

If I don't, I will have failed and failing is not good.  I have failed before and have not enjoyed the fallout.

Of course, no one wants to see my mask when it drops to the floor.  No one else wants to hear me cry uncontrollably in my husband's arms at 3am.  No one wants to recognise the anguish I have in the pit of my stomach.  Well, I know God does and yes, spiritually I have to keep coming back to His grace, His promise, His will.

But mentally, physically and emotionally, I don't know how to release the pressure valve.  I don't know how to drop the mask to the outside world for fear that if I do I will curl up in the corner and be a mental wreck.

Thank goodness I have Wayne who has known anguish and pain and pressure, and who has amazing empathy for my mental state.

The Cancer Society provides counselling as part of treatment and I'm guessing after reading this you will say "Lady, you need counselling".

So I have written this blog to enlighten about the mental struggle that goes on within. I have had the latest operation in a last hope of getting rid of the cancer, but with the knowledge of 'when' not 'if' it comes back, I am scared and frightened and confused.  

If I could have stayed at the beach and never come back, I would have been content.  There, I placed no pressures on myself...I could just 'be'.  How do I learn to do that back in the real world in Taupo?  With counselling?  Medication?  Lean on my faith more?  Drink more wine? Shut down emotionally? Keep on hiding it from everyone?

It's a big question...  

Here we go again...

8/3/2015

How to go from high to low in 24 hours.  'Gladys' my prosthesis was such a confidence booster on Thursday and I am thrilled to bits with how she is working out.  I really felt I had turned a corner.

But I got a call on Friday to go to Rotorua for an oncology consult.  I thought it was just to tell me about my change of meds and a repeat of what the surgeon had told me so wasn't worried.  Unfortunately Wayne couldn't come with me so when I walked into the consult room to see Elaine, the chemo supervisor; an oncology registrar; and oncologist, Ian Kennedy, all looking pretty serious, I was on red alert.

Mr Kennedy proceeded to go through my cancer file from the lumpectomy in January 2014, explaining the purpose of the chemo regime, the results of MRIs, CT scans and the hormone treatment, right through to the mastectomy two weeks ago.  In essence, he told me that the mastectomy was the last hope for a cure.  

Due to the cancer coming back while I was receiving treatment, it is displaying invasive, aggressive cancer and it is saying "we don't need estrogen to survive, we can do it all ourselves".  From this way forward, he informs me, it will be a case of controlling the cancer, not curing it, as that attempt has been done and dusted.

So they are going to monitor me closely with CT scans in 6 months but any niggle I have I am to get in contact straight away.  He says I have a very very slim chance of the cancer not coming back and "when" it comes back, he said, not "if", it will probably be in the bones, liver or brain.

As you can appreciate, this has been a hard bit of news to take in.  To say I am numb is an understatement, but I know I will process and work with this.  I have great support with Luke and Christine now in town, and of course, Wayne, and my wonderful friends and colleagues.

I'm not dead yet, that I know, and I refuse to wallow, but please bear with me as I learn how to live again.  I have had tears a plenty, and lots of looking into open space, trying to figure out how to be brave and go forward.  It's a tough ask and as time goes on and if cancer decides to stay dormant for months, then I will learn to relax again.  I am strong in my faith, I know God will not forsake me whatever comes along.  It is my loved ones I feel for at this time, so please, give them a hug and remember their pain and concern as they support me.

I'm back to work tomorrow for a few hours a day as I build up again.  I am still recovering from chemo residue, radiation residue, two general anaesthetics and an amputation of the breast, let alone the emotional and mental state - good grief, it's a wonder I am smiling when even I read what I have typed.  

And so life goes on - some good news is I had a great-niece born to my niece Julia and husband Peter yesterday.  Photos show Emma Rose is just beautiful. 

I would really love it if we could all remember to love our loved ones that much more and be generous with those hugs.

Until next time...

Mastectomy

21/02/2015

I never expected to be in this situation so soon.  Once diagnosed with cancer, it is always in the back of your mind that the disease is lurking, waiting.  It's sad to say this is how cancer patients do live. I have read enough on Google to know this is perfectly normal.  No amount of positivity is going to keep cancer away, but a positive attitude saves you from sitting in the corner and curling up in the foetal position and letting a wonderful life pass you by.  I choose positivity!

I arrived at hospital on Tuesday 17/2/2015 to be met by a host of beautiful nurses, who I call Angels, some of whom I had last year.  They were sad to see me again so soon and took great care of me.

My left breast left my body sometime between 8.15am and 10.40am.  Where it is now, I don't know but I guess part of it will be with pathologists so they can write up their report.

I returned to my room and declared: "I am a duck...quack" and, on cue, would paddle my feet like a duck.  Wayne and Luke found this highly entertaining.  I also wouldn't let go of Luke's hand and poked Wayne in the face more times than he cares to remember. I would also "go to sleep" when told to as well.  I do recall going off to my happy place - paddling down the Waikato River on a rubber tube - such a happy memory from last Sunday's excursion.

I didn't really grasp what it would mean when I woke up from the three hour operation to find I had had a Mastectomy of my left breast.  My right breast looked awkward, out of place, next to a flat chest.  My initial thought was they should have taken both.  I looked to Wayne to see if he was revolted by what he saw, but he said "It's not that bad, Hon".  A look in the mirror reflected something slightly bizarre - I couldn't really make sense of what I was seeing in the mirror.

I feel that this reality is harder than last year's.  Even though I said last year to take the breast off, the surgeon considered a lumpectomy was enough, and I trusted him then and I still trust him now. He dealt with what he saw at the time - a single lump that was invasive into the lymph nodes.  Even now the medical team are perplexed as to what has happened for me to get another type of breast cancer and whether removing the breast is going to be enough or do I require another round of chemo. The medical team will get together and in a month I will meet with the Onocologist for their plan.

Today is day 5 and I realise, prior to the operation, I made too light of a serious situation. I joked at my own expense about "losing a tit", "cutting it off", "I'm going to walk around in circles", "thousands of other women out there are walking around like me", "easy way to lose weight".  I didn't give my body enough respect.  And I also didn't allow myself to feel - I want to be the "isn't Andrea amazing how she is coping with this" person everyone has come to know and expect.

Well, let me tell you, the façade is cracking, the resolve is faltering, the ability to smile, come what may, feels under strain.  This is tough, and all because my emotions are kicking in.  

Going through chemo and radiation, well you know what's happening; for some reason your body takes what is thrown at it; tiredness is its legacy. 

But when a part of your body gets removed, that is a different story. It is visible every day, in your face, as you stand naked in front of the mirror.  You are now maimed, beyond curvaceous and voluptuous: you are in a state of change.  If cancer comes again, other parts will be chopped off as medicine works out what to do next.  This is my reality.  

I have a dacron prosthesis in a support bra - yes, I am lop sided.  I have staggered sideways a couple of times and got the giggles realising my point of centre is askew.  A weighted prosthesis will be fitted in a couple of weeks when the swelling goes down. 

I managed to lie on my side this afternoon which is progress and such a nice change from my back. Both Wayne and Luke have expressed concern at my deathly snoring!

Luke has now moved back home waiting for his beloved Christine to arrive in three weeks.  Wayne continues to work so Luke is in charge of trying to reign me in.  He didn't succeed today as I claimed cabin fever so off we went out for coffee but only for an hour then back home and rest.  

So, all in all, I'm tired, I'm anxious and I need hugs, so don't be afraid to hug me close if and when you see me - it could be just what I need; and bear with me as I express myself and learn from what the emotional challenge of all this is going to teach me.

Biopsy results are in

19/01/2015

Mum and Jan came with me to see surgeon today.  He tells us he has never seen anything like my scans - it looks like my Breast has had a shaker of salt sprinkled through it.  

He found it so hard to believe this has happened and the Breast tissue needs to be further explored so a day surgery coming up to get better pathology.

He is 99% sure it is cancer too.  

Next step CT and MRI scans this Wednesday, results the following Wednesday, then day surgery to take a larger portion of breast tissue then probably full mastectomy of the left breast and chemo on the cards.

How do I feel...a bit numb and exhausted mentally.

My angel neighbour pampering me through dark days

Oh no, it's back

18/01/2015

We got through Christmas before the bomb shell

So what do I think about while I am waiting for biopsy results after being told the radiologist is 99.9% sure I have cancer back in the same breast but different to the cancer I was treated for last year.

Well I started off calm.  I have been here before. Last year when all I wanted to do was be 'normal' again, I now realise when the medical people said it looks like cancer again, I realised this was 'normal' for me.  So I wasn't actually upset.  I didn't think what the hell was my surgeon playing at when he reassured me a lumpectomy was all I needed (last January).  He made the right decision for that particular cancer at that time and the chemo was meant to wipe out any cancer of that sort (not what I possibly have now).  So it has probably done its job.

With my immune system being compromised, then this is probably why the latest cancer is red flagging.  I am concerned that my hormone meds which are meant to block the estrogen and stop feeding the Cancer aren't working.

It's a bugger and I only say this because I can see the fallout this round could produce.  This year could be tougher from a relationship perspective, work and my physical and mental state. If this does turn out to be, I am going to have to dig deep.

My hours are already compromised at work and I wonder how long my employer can prop me up financially.  I am gutted at this stress this places on me and Wayne.

The heartache I hear in my mother's voice when I check in on her.  This shouldn't be happening for a vibrant 86 year old.  Her twilight years should be about letting go and being with her loved ones, her grandchildren - not a possibly ailing daughter.

My sister who has travelled a familiar journey 5 years ago and now reaching out with  sisterly love to her baby sister.  How hard this must be to see 'Andy' in turmoil.

My son and his wife who are looking at uprooting their life and moving to Taupo to support Wayne and I.  I would want them to come because they want to for lifestyle and not be pressured in a way by duty.

And as for my husband of the year, well he told me this is all unfair. Why, why, why does it have to happen to me, someone who brings joy and love and happiness with a touch of zany.  He said he will never understand.

And then there's you guys out there who have already carried me through last year with prayer, love, kindness, totally enriching our lives with all that you bring to our lives. Why would you want to ride this roller coaster with me again.  Thank goodness for Facebook and freedom of choice.  You don't have to read this.

Me - well I have got myself dead and buried a couple of times in the last few days.  I have spiralled and do wonder what is in store for me.  My senses are heightened and everything is looking amazing, I am experiencing terrific highs and then lows.  The tears flow in the dark of night.  Every little niggle I think Cancer has spread.  Then I think, no, it is just my body still adjusting to last year's treatment.

This is what it feels like to have had cancer.  You never forget, you are never out of the woods, you are always in limbo.  Maybe as time goes on and there are big gaps and remission stretches out, one can relax a little.  Me, having a callback on my very first mammogram after treatment, I feel robbed and well, this is just a bit harsh and definitely not fair.

But I will fight the good fight. If this biopsy all turns out to be a red herring, then I will be mighty grateful. If it turns to custard, then I fight on with my 'army' fed and watered and rested for approximately the last two months (between last radiation and now) and we hit this thing with whatever we can arm ourselves with.  I do not want to lose this battle any time soon.