Am I weak or strong?

12/12/2015

A couple of things have thrown me off my stride this week.  My dear bosom buddy went to our surgeon this week to be told at last she can have her portacath out.  It is another milestone for her and is saying the medical team are happy with her progress; that cancer is not lurking in the foreseeable future. I was so happy for her, honestly and then I gasped; as from deep down inside me came the realisation that I am still waiting for that moment and it isn't yet.  It brought tears and a feeling of pain.

The second moment came when I had lunch with another cancer buddy and she explained how cancer never enters her head. It has gone and that's it; she is getting on with life.  I felt weak and I admired her strength.

The third moment came when my GP rang to say the oncologist had answered his questions about reducing tamoxifen and that I really should be on the 20mg, and possibly more, to benefit; plus a whole lot of other medical terminology that I am still trying to understand.

One thing that he clarified was my misunderstanding that if I didn't take tamoxifen, my 5 year life span decreased by 30%.  This I had wrong.  If I didn't do all three treatments - chemo, radiation and meds - that would bring my life span down 30%. I have done two and doing the third which could give me only about 5% less.  So basically I have a 50% survival over next five years.  And that was all good, but again, I felt like I had been hit in the solar plexus.  I had had such a good week with energy and work, that telling me I should be on 20mg got me right pissed off.

The fourth moment was in the health shop and being told to take all the negative thinking away., don't even thing negative.  Now I know I am a positive person and I am also a realist, and if I choose to wear my emotions on my sleeve, then so be it.  I resent being told that if I have a negative thought and cancer comes back, this implies I didn't try hard enough.  That will really piss me off.  I ask that you choose your words and intentions carefully when talking about positivity to cancer patients.

A good thing from the health shop was that I have been taking the wrong type of magnesium for my leg cramps.  I was using Bio Magnesium but it has oxide in it, and I needed a different form with B6 and Vitamin C and the magnesium.  I never knew you could get different magnesium for different cramps, so trying a new brand.

Another good thing too is that I am sharing my experiences with a 'newbie' in the cancer journey and it has me looking at my journal I kept (and still do), and this has brought light to my day.  Reading about 2014 (I had attached photos too) just reminded me of the people I have met along the way who have supported Wayne and I, and that kindness from others has been beautiful to experience.  In fact today I was offered financial support from a small group of women who help cancer patients with  expenses if needed.  Generosity abounds in my life for sure.

Do I or don't I?

First swim in the lake this summer.  Family Fun

My tamoxifen holiday really had to come to an end after three weeks.  My oncologist was so kind in giving me two weeks off (and I snuck in another week) and the difference was like day and night.  

I took myself back to my GP and told him the side effects I was having still continued back on the medication; leg cramps, lower back pain and fatigue being the biggies.  

My GP explained to me that perhaps my body reacts to the 20mg of tamoxifen differently to say another person taking the same.  He suggested why not try taking 10mg and see what the side effects are like; if that doesn't work go down to 5mg.  I explained I didn't want to let my family down by not taking anything.  Emotionally, he suggested, I would feel like at least I was doing something.  The drug is insurance and I won't know if it is keeping cancer at bay or I actually have no cancer.  

I belong to a support group on Facebook and there are so many varying thoughts on reducing the dose, taking a "holiday", stopping all together.  With my GP coming up with this programme, I felt like it gave me some control back.  I may be living in dreamworld and probably cancer has control and I am just wishful thinking.  But to walk out of the GP's room and go right, the GP and I have a plan I could work with.  

So I started back on 10mg cutting my 20mg tablet in half.  I took it at dinner time so that with any luck if I had the side effects like the fatigue, then I could sleep it off.  

• Day 1, yes I was fatigued.  I yawned my way through the morning.  
• Day 2 and 3 the cramps were back but only in my feet and ankles, not like before when it was the leg muscles.  The cramps woke me at least five times and I had to jump out of bed to get my feet back into shape and basically unlock them.  
• Day 4 and my lower back was aching and it was a struggle just watching the Santa Parade and getting back to the car. The legs just don't want to work for me anymore.  
• Day 5 and I found some Bio Magnesium last night and took that at the same time as the Tamoxifen and thankfully there were no cramps.  So I am rather encouraged by that.  I know that previously, over a few weeks, the side effects changed and either worsened or changed.  

Hopefully I can keep this to a level that I can manage and be able to function with.  Will update in a week.

Great outing on the Huka Jet

Holiday is over

A holiday has become a rarity in our household over the past 18 months.  Cancer took its hold and wouldn't let go.  It consumed me, taking my annual leave, sick leave and special leave, just so I could get through operations, chemo and radiation treatment, and fatigue.  I have been very fortunate to have such great support from my employer.

So with a bit of juggling I managed to get five days leave and last week we headed to Ohope Beach.  It was just what I needed to refresh.

The sea is my happy place.  It brings back great memories of family trips to the beach for holidays, usually the Coromandel Coast, or taking day trips so Dad could unwind with his fishing rod in the water at the weekends and us beach babes could sunbathe.

I love to put my feet in the water, but even better, to immerse myself.  The Catholic comes out in me with the "Washing away the sins of the world"...it's what I recall as I dive into the waves.  So it was with absolute joy that I got to have a swim and feel the salt water cleanse me.

Another water baby found me and came over for a chat

Each day had us waking with no set plans, just going with the flow.  So it would start off with us having coffee out, a walk on the beach, a little drive here and there, and dinner out. Lots of time to gaze at the beauty of the changeable sea and just breathe.

I nearly forgot how to "breathe".  When we arrived at our holiday destination, I immediately said to Wayne I wanted to go home, I didn't want to be there.  After some time and reflection on why I felt this way, I realised that I no longer liked surprises.  While I am at home in Taupo, while I am doing all the things I regularly do, then I am in control. I am safe.  I am craving my old normal, but that is long gone.

So with that out of the way, we began to enjoy and relax.  One week of beautiful sunshine, sea air, lazy lie-ins, afternoon ice creams, a wine or two, and having my best mate close beside me - a true tonic.

While there I bumped into a lady I was at the cancer lodge with a year ago and she just happened to be the local hairdresser.  So on a spur of the moment, I caved and gave in and had my hair coloured black.  Immediately after colouring my hair, she closed her salon and we went next door for an afternoon of bubbles in the garden bar.

The new hair colour

We organised a catch-up with another cancer lodger and so, of course, conversation naturally came around to how we were coping, living, enjoying life.

We talked about what we were doing to keep cancer at bay and how it was affecting our future.  We all held deep fears that we tried not to let surface too often, but could talk about it so openly with each other.

I have been asked if I have enjoyed the last two years of my life.  It is a thought provoking question.

When I look back I can honestly say I was happy in that I knew I was getting the right treatment, that everything possible was being done for me within the medical world.  I had tremendous support and I kept a good attitude - not always positive, that is too hard - but by keeping my life real, I think that helped me the most. I told people honestly what was going on with me and I believe by doing that, I could thrash out the negative stuff.  What's that saying "a problem shared is a problem halved", well may be that was the case for me.

I wasn't happy when I felt like crap but that is to be expected.  I never asked "Why me"?  but Wayne often said "What are we going to learn from this"?

I was also asked what did I do that helped me get through.  Well working was a big help for me.  From the outset I explained to my oncologist that I needed to work, and he said he would help me do that.  I worked 75% of the time during treatment and I was pleased with that.

The other thing I did was write a Facebook page updating friends and family in one go.  The feedback and support lifted my spirits on many a day.

I embraced kindness.  The biggest lesson I have learned on this journey is the kindness of others.  It is forever humbling the generosity and compassion we have received, and that is a legacy Wayne and I will never forget.

When the cancer recurred in February this year, I started ticking off some "bucket list" items.  I did three:  

went down the Waikato River on a rubber tube with my friends and colleagues; 

went skinny dipping with a cancer buddy, 

and was a passenger in a rally car through the Maramarua Forest.  

I'm sure I could have come up with more but as the cancer is in remission, I don't have to for now.

I have had two weeks off Tamoxifen thanks to my oncologist giving me the okay to do so.  The difference is like day and night.  I so don't want to go back on it but with stats going down to 30%, I have to really consider my reasoning for this.

I don't want to let my family and loved ones down by saying no more, but the quality of life is such that today I can quite easily forget I have had cancer and get on with life.  As soon as I go back on the drug, I will regress back into the side effects.  I have an appointment this week with my GP and we will talk to my oncologist and see if we can work this out together.

So a blissful two weeks off Tamoxifen and a blissful week with my darling husband.  He so needed this holiday as much as I did.  

We will return to my happy place.

For now, as I step out, I will renew my joy; I will feel secure outside of my current daily rituals that have kept me safe for the last 18 months, and start to embrace surprises again.

TIme for a break

07/11/15

Well after a month of going off amitriptyline and citropram, my neuropathy in my legs is back to square 1 like it was six years ago.  This means that I have gone from day fatigue when these drugs are combined with tamoxifen, to no sleep at night.

As I am going on holiday in a week's time, I have made the brave decision (wow, how brave am I lol) to go off the tamoxifen and back on the other drugs so that I can function on holiday.  Hopefully this will give me the break I need to then get back on track.

Sometimes you just need a break...

I have since contacted my oncologist who has said he would give me a two week holiday and then we will discuss...

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.

Missing You Already

26/10/2015

So one week into the lowering of neuropathy meds and I have to say my head feels clearer and my legs not so heavy, but the neuropathy is having a party at night time when I'm in bed.  Horrible foot cramps where I have to get out of bed 3-4 times at night to unlock distorted feet.  Hence I bought a foot spa today and seeing if that can loosen up the tootsies.  So one drug to go and see what happens then.

I came across this article during the week.  I have edited it to what is relevant for me right now...

"But when treatment is over? Well, life gets back to normal. Right?

Hmm … not so fast. It’s just not that easy. That’s what we forget to tell patients. Getting back to normal, getting on with life, is harder than everyone expects.

Picking up the pieces of your life before cancer – before chemotherapy or radiation wreaked havoc on the body and soul – takes much longer than one might expect. With the end of treatment comes an upwelling of fear of recurrence, fear that because active treatment has stopped, the cancer will be able to grow again. There is fear surrounding each scan and each blood draw. Anxiety swells before each oncology visit.

We might have forgotten to tell you that this is all normal. It’s an expected part of the recovery process. The fatigue from chemotherapy will get better over time. The hair will grow back. The fear of recurrence will subside with the passing of the months.

Another thing that we may have forgotten to tell you? You will be able to get on with your life again after cancer treatment. You’ll probably be a changed person after your experience, but you’ll get back to normal. If not the old normal then for sure a new one. Your life will resume, despite cancer, beyond cancer.

Just be sure to rally the support during this time. You still need it".

As was apt to do, the movie I saw last night "Missing You Already" got me thinking.  The hardest thing for me to watch was as Milly died, her husband was lying with her and his heartache was so raw.  I realised then that this is just what Wayne would be like and it broke my heart to know the pain he would be in.  He doesn't deserve to be a broken man.  Hopefully it's all a long way off.  Today I feel like it is

I have always been a people watcher and created Luke into one as well.  I was always making up stories about things I would see and say to Luke - look Luke, suspicious. Drug deal going down - and that was when he was a child!  He is an avid CI channel watcher so must have peeked his interest.

When I watch children now, I just see the gift they are.  One of our young mum's from work is just relishing motherhood and she is showing me again how to enjoy and make memories with loved ones.  I see her giving time to her son and that got me having some regrets.

I regret now that I had not spent more time and had more adventures with Luke when he was pre school age. I wish I had helped him explore more and look for adventures. I wish I had stopped doing the household chores, trying to keep myself busy, and spent time with my son showing him simple little joys.  I guess that's what grandparents do so well.  But thank goodness Wayne came along when Luke was five and introduced him to all sorts of craziness in 'Wayne's World'.

I know of another two ladies diagnosed this week...time to examine those breasts again, people.  Cancer does not discriminate.  Be aware of body changes and, if in doubt, take action.

N.E.D.

09/09/2015

"No evidence of distal metastases" - that's what the report says.

So let me tell you what it's been like living the last six months in my world - I thought I was dying. Whether the oncologist was right in telling me, in his expert opinion, the cancer would be back within six months was right or wrong, that's debatable.  For the most part though, I wanted to know. And he was predicting by my past results so I understand where he was coming from.  In hindsight, 3 hours after the news today, I'm glad he did because I have learnt a lot about myself in the process.

So the oncology team changed the hormone meds to Tamoxofin and I started that journey of relying on a medication to keep me alive.  And it's done its job.  No changing my diet, exercising more, positive thinking or praying hard out (though I know I have been lifted up and supported by so many who didn't give up on me when I was too spiritually exhausted to go there).  No, I left it up to good old fashioned medication.  But all the time I thought in the back of my mind I was dying.  So I put on the brave face; I kept that stiff upper lift for all appearances until I was in the confines of my own home.  No one will see the "scared Andrea".

Today, when I got the report saying no evidence of cancer, I honestly couldn't believe it.  I was expecting a call to have an MRI.  So I went into shock - physically, I had a meltdown.  You would think I would be jumping for joy and smiles and celebrations.  Um no, I went into meltdown mode.  I cried on my colleague's shoulder, I cried on my son's shoulder and then cried some more and then slept my grief off.  See if you can understand it this way...

You have been sentenced to death and you are on Death Row and then your lawyer appeals and you get a reprieve while the appeal is heard. This is me today.  This the only way I can explain how I felt today, right there and then I had been given "a reprieve".

My body will still struggle with the meds side effects and fatigue.  It will still be mending itself for the next 18 months, they say, from the operation and treatment.  But I will now embrace this without the thought that my body is giving up.  It hasn't been giving up; it's been fighting to live and I owe it that much to get my mind on the same wavelength.

So I will now do cartwheels and hand stands (and well God damn it, if it was summer a certain someone and I would be skinny dipping).  In fact I might just walk to the shop and buy a bottle of Kim Crawford Pinot Gris.

Thank you so much for taking the time to read my story.  I know it isn't always easy reading but I'm not big on denial. If I can help someone else through my words, then that gives me purpose.  

Thank you to all of those who have not given up on me.  It is honestly really hard listening to people say "You'll be fine" when you are living it, but to those of you who said it...you were right!

I'm now going to make plans for a holiday; one with no cancer looming over me.  It's been a long time coming.

A Year On

8/8/2015

This photo popped up on my Facebook timeline yesterday to remind me where I was this time last year.  I took one look at that photo and I sighed (and cried inside) because I look at that photo and think that I looked so much better then, which is silliness because I was in the thick of chemo treatment.  I see light in my eyes, a smile, colour,; I see vibrancy, I was in control of this.

But a year on I think I look worse today than this photo.  I feel my heart is heavy.  Have I commenced another stage in the grieving process?

I'm trying to work out if I fit the mould of 'stages of grief'.  Researching them today, I am pretty confident I have experienced all these, but not necessarily in this order:

- denial

- anger

- bargaining

- sadness

- acceptance

'Sadness' seems to be ticking the box (definition:  Confronting cancer and the losses it entails understandably leads to great sadness. You may have trouble sleeping and concentrating, you may lack your usual energy, or you may find yourself crying unexpectedly. These are normal reactions, but will you ever climb out of your darkness? Speaking with a professional counselor or participating in a support group can help.). 

To be re-diagnosed in February and a probable recurrence sentence of 6 months placed on my shoulders, has hit me hard, harder than many will realise.  I am literally still dragging my body around, knowing that it needs to heal, that it is still early days, and how I must learn to to listen to my body and remember to use my voice when I can't go on anymore.

I wish I could draw, because my picture would be of my body, side on, with a waterfall cascading from my chest inwards and tumbling down to a massive pool. It is constantly flowing at the moment.  Crying is good, I am told, gets rid of the toxins apparently.  Well if cancer is a toxin then it must be gone with the tears I have shed.  Soon, very soon, the tears must dry up surely.  

So it could be time to talk to a professional again, even if I feel like I am repeating myself.

On a brighter note, I heard on the radio today that it's three weeks till the end of winter!  Roll on sunshine and bring the heat, as there is a lake/ocean just waiting for this One Eyed Minion to dive into.

Freak Out

20/07/2015

Today I had a follow up three monthly appointment with my surgeon.  I made the comment that I seem to be getting cleavage from my left breast (which is no more) and he had a look.  Warning, warning, warning bells!  So in one sentence my morning  turned upside down - "I think we should biopsy that lump".

Off I go to Lakes Radiology for an ultra sound with the potential for a biopsy. I saw the same consultant who did my January scan and he recognised me. I told him, "tell me if you see anything, I want to know". Thankfully it was decided I didn't need the biopsy as he could see nothing sinister in the scans.  He asked what else he could do for me and I said "please scan my right breast for peace of mind" - and he did.

Now I thought I would be okay with all that happened this morning.  I had Luke with me in support and I'm so glad he was there.  We were able to go through the raft of emotions together and the 'what ifs' in a matter of two hours.

But I'm not okay really because once again I went into panic mode, my stomach was flipping, I went into the 'I will have to give up work if I have more chemo', etc etc. If Luke hadn't been there I probably would have had a melt down but I had to be brave for him.  

I don't want to have a melt down but I am feeling on edge.  I am so scared to write this blog for what others will think of me and my weakness.  I know how I should be and I know how others want me to be, and I know so many of you will have words of wisdom, yet my brain is playing a different tune.  I am in awe watching my fellow cancer mates get on with their lives, how stoic they are and the joy I see in them.  I have claimed back "joy" and that is my new daily journal entry right now.  

But it hasn't stopped me freaking out.

Yes I saw the trauma psychologist and that helped heaps.  But today I have gone into the dark hole all because of a few words.

I haven't written a blog for a long time because medically speaking I am where I should be in recovery.  Tamoxifen meds is a bitch of a drug, but if it is keeping the cancer at bay, then I need to take it.  I asked if I could take a break now and then and I was told no, never.  Shame.

Mentally speaking this is all of a challenge for me.  Some days I rise to the challenge, other days I don't.  So when reminders of cancer come knocking, like 

- getting dressed each morning and thinking I look like the One-Eyed Minion

- buying a silky chamise because my remaining boob heads East and my tops all go with it so trying to find a solution (other than a pin)

- walking with a cane in town because I am so unstable and yet I look perfectly alright

- the doctor keeping an extra special eye on me and sending me for tests

I am struggling to rise to the challenge.

When I think back to last year, that was physically demanding and yet my body coped.  This year, my mind is my illness and learning how to put a bandaid on it without it still 'bleeding' is Wayne and my challenge.  I say Wayne's too as he sees the real me that I don't want the rest of the world to see.

So not much joy in this blog, but I'm telling it like it is.  Cancer is not just chemo, radiation and meds.  It is mentally and emotionally getting through the trauma to body and mind, it is learning how to view and work with a physically changed body, and how to face the challenges of the mind games.  All incredibly powerful individually and yet put it all together and deal with it all at the same time, well I am not as strong as others, and that's okay, I'm wisely told.  I apologise for letting the mask down, but this is me - raw and bleeding, crying and smiling, joyful and resentful, grateful and alone, anxious and calm, peaceful and hostile...so many emotions to ride out.