3rd time lucky

This will be confirmation news for some of you that the biopsy results arrived by phone call from my oncologist on Friday and the diagnosis is breast cancer.  Not what I wanted to hear but we knew that would be the outcome, didn't we?

This is one hell of a ride! Once again the only indication something wasn't right, on reflection, is appetite.  This last month I could easily have taken food or left it, and  that is just the same as when I was diagnosed New Year's Eve 2013.  Yes, my fellow supporters and encouragers, that's how long this crazy ride has been going for.

So I'm moving on through the stages.  In the first diagnosis I thought I covered the five stages of grief in that year, and I probably did, but now I can see that each diagnosis is a stage as well.

So 2014 was "denial". Yep, couldn't believe this was happening to me.  A lumpectomy and lymph node removal.  Chemotherapy, radiation and hormone meds was the treatment for that year and I was so proud of the way I handled it.  I proved to myself that I wasn't giving in or giving up.

I can remember Wayne and I sitting down one day and asking ourselves what are we going to learn from this.  Well that first year was the 'year of kindness and spirituality'. 

People were (and are still) so kind, and people we hadn't seen or caught up with for years came out of the woodwork to express their concern for us. I say "us" because as much as Wayne will say "I'm alright, I haven't got cancer", we are together in this every step of the way.  If he can be by my side, he is there and does not falter.  Yes, Wayne rightly earned 'Husband of the Year 2014" in my world. 

My spiritual life came alive in this year.  My experiences are personal. I know God was with me and Wayne every step of the way.

January 2015 and well, on my first mammogram, after completing all the treatment in 2014, I got the callback and underwent a mastectomy of the left breast. The surprise and disbelief that we were to undergo another year of treatment was just too daunting for me to take at some points and my spiritual world collapsed.  I didn't question God, I just gave up having Him on my radar.

All I had to do this time was take hormone meds.  My chances were 50/50 of a recurrence so scans were planned six monthly.  I stuck with this regime for 15 months and got a clear scan.  But, I admit, along came "sadness and grief".  I really didn't see a lot outside of myself.  I had nothing to give anyone including Wayne, but he stuck by me and was so patient and loving; so really he did earn his title again for 2015 - I just didn't announce it to the world and neglected to tell him.

Then I saw light at the end of the tunnel...or should I say summer.  I came off the hormone meds which were making me an old lady and causing me pain.  So, in consultation with my oncologist, we agreed the right thing for me to do was to come off the meds for 'quality of life'.  My recurrence rate was at 50/50 so dammed if I do, dammed if I don't.  And I wanted to enjoy summer and what would be after that, I would deal with.

We had a blast, Tania Lord, Luke Welten, Christine Welten and I.  Every opportunity we were in the lake.  The bubbles on the beach, the odd skinny dip (me and Tania!), the sunsets, the laughter...bliss.  And I was okay👍🏼.  I truly believed I was now okay.  And I got through another scan.  Yippee, we're sweet.

But wham...September 2016 scan shows up dodgy lymph nodes and so begins the "anger" stage.  I am really pissed off to tell the truth.  Once again, I should have picked that the lack of appetite was a pre cursor to my body not bring right, but I honestly believed I was fine for this scan.  My head and body were in sync...yet hello, the beast returns.

So here I sit, rocking in my chair, contemplating the 'what if' question.  My oncologist said to remove this one straight away, the "what if I had stayed on my hormone meds".  He reiterated we were right to do what we did. He expected the cancer back within six months and I got 18 months cancer free, so be at peace with this, and I am.

Now we try the hormone meds again for 10 weeks.  Last time I took the meds was at the end of two major operations and chemotherapy/radiation treatment, so I'm hoping my body handles them better with all that stuff over with. I really should ask why 10 weeks is the magic number, but I will be scanned again then and we will regroup to plan our way forward.

Wayne is aiming for Husband of the Year 2016 - he's coming along nicely.

I should add at the end of this post, please, if you have any questions, ask away.  I will be open and honest.  My way of processing is writing and talking about it.  As I have always advocated, if I can help someone beginning this roller coaster, or a loved one wants to know how they can help someone else, I'm happy to share my experiences.  I do remember myself though, not everyone is an open book and they do it their way, and I respect that.
Please don't let the silence be deafening.  I am still here.  I trust my oncologist.  We have a good relationship and he and I know he is looking out for me.  That's what I need...and time, I just want more time.

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

Sex and Cancer

08/12/2014

Big thank you to Tania for plying me with wine after a visit to GP today to talk about sex.  It's one of those taboo subjects that doesn't get talked about when going through cancer.  Now I am out the other side we thought yay, it's all go.  But unfortunately not.  So if you don't want to know, stop reading now.  You know I am all about education so here goes...

The hormone pill I am on thins the vagina wall which makes for painful sex.  I can change to another hormone pill that thickens the lining of the uterus but can cause cancer. I can also have an estrogen cream which may help but has to be limited to six weeks as we don't want this to produce estrogen and feed any cancer.  The GP asked me is sex important to us, if so, then it is quality of life I am looking at.  He rang my oncologist and the above is what they could come up with.  If this doesn't help then where to from here.  So cancer is teaching me something else now and throwing me off centre.  You think when you have breast cancer it's all about the boobs, but alas no.

I came home to Wayne and the darling just said we will learn about different intimacy and loving.  Gotta love this guy.  He is being very patient.  When I was undergoing chemo they gave a suggestion not to have sex for three days after treatment.  We waited five days and still Wayne got chemo burns/welts in and on his private parts so something to consider...

So another lesson today...Do I want to die for sex...I don't think so!  

Husband of the Year 2014

17/10/2014

Today is Wayne's last day at BP after four years working there.  He is off to work at the music shop in the RockShop in Rotorua as Assistant Manager. He so deserves this.  Music is his passion and it will be like "going home" to his rightful vocation.  BP Taupo have been fantastic in their support this year and I can't thank them enough for this.

I am so proud of my husband.  He is the reason  I have travelled so well with this whole cancer experience. 

He relates his part as being like the coach of a soccer team.  He can get me ready, tell me how to play, encourage me and send me off for the first half. I'll come back in battered and bruised and ready for oranges, then once again  he will send me back out with encouragement.  He will always be on the side line, shouting words of encouragement, but he can't actually play the game. That is up to me. I may win or lose but regardless I know I have had the best of the best by my side.

Love you Wayne Cornwall and thank you for stepping up and working with me, never judging or criticising, just letting me do what I have to do in my way

A Bend in the Road

26/07/2014

My chemo was cancelled this week due to some odd symptoms arising, therefore an appointment with the oncologist consultant was arranged. 

Off to Hamilton today for that consult with Dr Kennedy who we haven't met before. The waiting room is still like a bus station. From all four corners come consultants who call out a name. You have to be vigilant because you don't know where you are being called from.

Dr Kennedy was lovely. He brought up my notes, explained what he knew about my case, asked me my symptoms, examined me and then lay out the plan for next week.

We identified that my neuropathy in my feet/legs has got worse since the change of chemo concoction.

Re the symptoms I explained to him, he said if I went to my GP with my symptoms, the GP would say I had inner ear vertigo, inflamed bowel (not ovary that I thought the pain was), and pulled chest muscle.

Because I had lymph nodes that were cancerous (13 of 29), my symptoms are a 'red flag', so he needs to eliminate brain cancer (vertigo), bowel cancer (inflamed bowel) and chest bone cancer (pulled chest muscle). 

As he explained all this, he drew his chair in very close...hello, this is serious I thought. He then said to Wayne "No more black humour for this lady, Wayne, no more". Gulp! I said "Are you serious, that's how I get through". "No, no more, we need to look after you", he then grabbed my hand in his two hands and wouldn't let go. Okay, this needs to be taken seriously I think he is trying to tell me. Stop this flippancy.

So today in Hamilton I did bloods to check for "any embers burning" (his words), and then next week have CT scan and MRI in Rotorua.

The positive from the scans is that one way or another I will find out if the chemo is working at least.

If it comes back finding something, then we will deal with it from there. I admit I am in denial right now (like when I first got diagnosed), but do feel better prepared and educated if the scans are sinister. I know the waiting game now is just that. Enjoy the moment while we wait.

So I am appreciative of Dr Kennedy not poo-pooing me, I get time off chemo for a while and I will find out if chemo is working sooner rather than later.

All part of the process...hop on board, we are off on another ride.

It's time to start writing

01/03/2014

I woke this morning to realise it is now two months since being diagnosed with breast cancer. The first few days I was in total shock and felt like Wayne and my world were shattered. My last three years back in Taupo have been full of contentment, peace, joy and fulfilment and I was loving this life.

I found a lump while showering and on New Year's Eve, I was diagnosed with breast cancer.

What ensued was multiple appointments with a surgeon in Rotorua, then to hospital for a left breast lumpectomy followed by two weeks off and then back to work.

The operation was the easy part.  I healed well and fast. It was what was to follow that rattled my cage.

After tears, disbelief and realising my own mortality, I got my head around it. I was Stage 2 and in my mind, I was on the right side of the four cancer stages. So I embraced with confidence the road ahead. I leaned into God and honoured His scripture 'Be still and know that I am God'. I rallied my prayer warriors and positivity friends.

Can I say right here that my friends, colleagues and family have been overwhelming. I have felt over these last two months the depth of friendship and love beyond measure. Wayne and I have been truly humbled.

Whenever I had a scheduled appointment I have text my friends and asked for prayers and positive thoughts. They came through in abundance. I was never alone and feeling sorry for myself.

My police work colleagues entertained me with their sick humour and I joined in. Laughter is so good for the soul.

I started a Memory Box.  I was being so overwhelmed with love and support, cards and gifts; I wanted to remember all this in times of worry.  

I also had a plaster cast mould made of my breasts before I had my operation and a friend painted artwork on it that was relevant to my life's loves, like the waves of the sea, a rose, a cross and 'aroha'.

Once again, due to the calmness and safety I felt, I was being loved unconditionally. I felt like all the things I had been embarrassed about that I had done in my life, had been judged for and had disappointed family and friends, were all forgiven, and now I was seeing how I really am perceived in the world. I work hard. I love my job. I try to be kind and give where I can. And in return people were saying "thank you for being you". What you see is what you get.

I headed back to work and was so happy to be normal again. Long may it last, well at least a month I thought. But alas no, appointments started to fill up the diary pretty quick.

So this week I thought I had a straight forward appointment with Radiation Oncology. To my knowledge they were just going to tell me how they were going to radiate my breast in 7 months time. And for the first time, I didn't text my friends and ask for prayer and positive thoughts (though I'm sure many were thinking of me unbeknown to me). But I was given (on Facebook) a quote for the day 'Be Still - I've got this - God' and I thought "that's nice", not realising I would lean on this a few hours later. 

Waiting in Radiation Oncology before
receiving the changed diagnosis

So I went in a bit cocky I guess, like 'this'll be a walk in the park'. So it was a shock to be told the goal posts had changed. I am now Stage 3c and that is on the "other side" of okay to me.

To say Wayne and I were shell shocked again puts it mildly. My first thought on coming out of the appointment was "I want to see Mum". And so we drove home to Matamata and I fell into the arms of my loving, comforting, beautiful mother. At 85 I am still her baby.  My sister Jan arrived and we sobbed uncontrollably together with once again our mother lovingly embracing her babies. She fed us, made us cups of tea and cried with us.

I asked my daughter-in-law Christine to tell Luke. I couldn't. All I could think was "Wayne and Luke don't deserve this, they shouldn't have to go through this because of me". I don't want them to be sad. Thank goodness Luke has a wonderful wife, a woman of God, in his life to share his journey with.

I went back to work the next day gutted and worn down. I was angry, not at God, just over something I had no control over. Thankfully Wayne sensed this and the next thing I know I am being bundled home and put to bed.

Four hours later and I awoke with a whole new vision. I had had quiet time to process, to pray, to walk the neighbour's dog and watch the sunset. I suddenly grabbed life again with heart and both hands.

I googled and began to grasp the seriousness of this new diagnosis. Menopause and hormones have me in their grasp and what will keep me alive from a medical perspective is chemo, radiation and five years of medication. 63% of women with my diagnosis survive those five years. Numbers and statistics tell me something but they don't define me. I have never been good at maths.

I have my faith. That is my strength. I have been shown so many times in a practical way God's love and faithfulness to me over the last 22 years. I know I will see from time to time one set of footprints in the sand and I have confidence that that is God carrying me.

So yesterday morning I pulled back the curtain and the most beautiful sunrise was climbing up behind Mt Tauhara. And I said to myself "that's why I'm alive, to appreciate, to share, to embrace, to love, to give joy and to fight on".

So today I take on the challenge again with a new set of emotions and feelings, a new armour, a new appreciation and a heart brimming with thankfulness.

i was brought up in ,Hobbiton, New Zealand, well Matamata actually.
Here we are after my diagnosis changed having some light relief

What not to say...

24/01/2014

I have only been diagnosed with breast cancer for 24 days now (who's counting!) and I so understand what this writer, Ann Silberman's blog 'Breast Cancer...But Doctor I hate pink" is saying. It is so hard to stay positive - but what I am going to try my best at is 'Kia Kaha'...thanks to my sister-in-law for that phrase.

"It's awful to tell somebody to think positively. Do you think all those cancer patients who are now dead thought negatively? It's not a good thing to put the burden of our disease on us. .... The one thing you should never do is put the onus of our illness back on us. We didn't cause it by negative thinking, by eating a hotdog when we were 12, by sitting in the sun, or by not exercising. It just happens. I am positive in spirit but that won't cure my cancer. Neither will being negative kill me. It's not my fault. Never deny our reality, whether you agree with it or not. When all else fails, what do you say to a person who has cancer?
"I'm sorry"