Two weeks & counting

16/10/2016

Well I am two weeks into being on the tamoxifen meds and so far so good.  

• The aches and sore joints I had from taking the meds last time have, to date, not eventuated which is great.  I think this could be due to last time it was compounded by two operations and body being whacked from chemo.
• I still don't know what to eat or want to eat, as I am never hungry, but I am not losing weight.  
• I am finding that if I get overtired I become very weepy.  By the end of the week I am shattered.
• I have a cough that is tickling away deep down so not sure what that's about.

I guess there isn't a lot to complain about in that lot that's for sure.
At my oncologist's referral, I had an organisation named 'Sweet Louise' ring me during the week...   "Men and women living in New Zealand with incurable (secondary) breast cancer may become Members of Sweet Louise to access a wide range of support and services – membership is free.  Our range of services complement existing medical treatments and community support services. They include research-proven strategies to complement traditional treatment, as well as uplifting experiences and practical assistance to enable Members to cope better with treatment and its related day-to-day challenges. We aim to support each Member to live as positively as possible, for as long as possible".

Sweet Louise provides

• An annual allocation of vouchers worth $500 to spend on our range of complementary and practical services. These include house cleaning, lawn mowing, wigs, massage and meal deliveries. All complementary services are approved by our Medical Advisory Board.
• Monthly Member Meetings 
• A wide range of information resources, both electronic and printed
• A facilitated Men’s Group for partners/husbands (in collaboration with local Hospices, in some locations)
• Practical support for children
• Referrals to and collaboration with community organisations supporting families experiencing cancer

My husband Wayne bought me this heart
for the garden on our Sunday date

It wasn't until I heard this that I suddenly realised I must be in this category though my oncologist hasn't exactly spelled that out to us yet.  I guess when his report says 'containment not cure' then I have to assume all is not good in the hood.  As I don't see him until December after next scans and he did say to me he wouldn't have 'that conversation' over the phone, then we will wait for the word from him.    In the meantime, I am being well supported again.  In fact the coordinator from Hamilton is coming to have coffee with me in November so feeling a bit special. 

As for the mental and emotional side, well it's one hell of a ride.  Sometimes when I am describing my situation it is like an outer body experience; like I am sitting beside myself listening to me talk. It's quite surreal.  I have to admit I'm pretty scared about moving forward.   It's that hurry up and wait scenario.  I haven't quite stilled the mind yet.  It wants to take me places and I am having those conversations that are probably pretty confronting for those close to me

• I have spoken to a friend who says she will help nurse me if/whenever
• I would have a Farewell to the World party
• I have revisited funeral venue
• I'm considering giving my body to a medical school seeing as I can't do organ donation now
• I asked Wayne to do a suicide pact with me but he told me to F... Off - love this guy

Please don't judge me for these thoughts.  Perhaps not everyone would put them out there like I am.  If you ever walk in my shoes one day (and I pray you don't) you may realise my ramblings are normal.    I am so proud and grateful my loved ones are indulging me in these conversations. It's not easy for them.  You are the lucky ones as you have a choice to read this or not.
In the meantime I wake each day full of vim and vigour, and so what if by the end of the day it is all a bit much. I come home to a lovely calm house, I can sit in my rocking chair and have a glass of vino.  I have a view of the lake and sunsets to enjoy, and once again I do count my blessings.  I'm in a very confronting position which I acknowledge and must work with day and night.  Thank God for the love of a good man, amazing son and DIL, family and friends.  Blessed...

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.

Cycle of Life

Thank goodness for six monthly scans...

On the road to get Ebus with Henry for company

For the first time in 18 months I was positive that my scans would come back clear again, just like all the other times, but alas not to be.  My GP phoned and says "I will ring you tonight" - ah no, you will tell me now thanks, and so he did.

My scans showed I have abnormal lymph nodes basically in behind my breast bone about 3" in.  First step - let's see the oncologist.

So off we went two days later to have my oncologist swoon in towards me with his office chair and with his blue steely eyes, he painted the picture.  

-  Yes, he thought the scans showed abnormal lymph nodes, different to six months ago.  

-  No, we can't operate. 

-  Yes let's do blood tests today while at Waikato Hospital which will confirm his diagnosis of cancer in the lymph nodes.

Blood tests confirmed the next day so I go for an Ebus biopsy to check if the cancer had hormonal components, ie breast cancer recurrence, or if a new cancer.  If hormonal, then back on hormone meds for 10 weeks, then a scan and see if the lymph nodes have stayed the same or reduced; if so, good sign and we carry on with that regime.  If not hormonal or if not responding to hormonal meds, then chemotherapy (no radiation).

Remember people, I have been here before, so for some weird reason I am not overawed as yet.  Sure, I am surprised it has returned and maybe I am experiencing denial, fear, acceptance.

You know what though, I hear silence which I take as disbelief on your part.  I am so grateful for lots of encouraging and beautiful comments and sentiments when I told you.  But the silence is deafening and I know why. Because I know how sad you are for me and I know you don't know what to say, and I know that you want to say 'be positive' 100 times, but even you are now starting to doubt and who can blame you when it comes back for the third year in a row.  I know that it breaks some of your fortitude and resolve in believing in my physical body being able to beat this.  If all I need is hormonal meds, then this will be much easier on me physically.  If I go to chemo, then I will be as strong as I can,  and the days that I am not, then I will falter, but I will always do my best to bounce back up.  Let's not jump too far ahead though.  This could be an easier road than perhaps first thought, let's pray so.

When I was diagnosed in 2014, I remember Wayne saying at one point "what has really changed from one day to the next".  I remember declaring loudly "You don't know what it's like, you aren't me".  Yet in his mind one day I didn't know I had cancer, the next I did, but I was still me.  I couldn't grasp that then, but I do now.  Nothing has changed except I know it's there.  If I had gone another year without scans and didn't show any obvious ailments, then I would be none the wiser until a more serious event reared its head I suspect.

So I say:

- thank goodness for the scans that have captured a picture of some abnormal lymph nodes

- thank goodness there is modern medicine

- thank goodness every day Pharmac is getting closer to releasing meds that can work more effectively in my lifetime. (To be told I could have one med that would work but it costs $10k a month - yeah well, that ain't going to happen.)

Admittedly today I am a bit sad and disappointed, and a bit angry that it's happening again.  Really?  Three times?  C'mon!!  I am so gutted for Wayne and Luke, and my family to have to endure this again.  I see what it does and I am so so sorry for them.

I am waiting a lot more patiently than the previous two times for a phone call to undergo the Ebus procedure.  Apparently 'Mr Wong is going to wing me'...Wayne is already getting his 'abscess makes the fart go Honda' joke ready for Mr Wong.  Heaven help me.

Thanks for being my sounding board.😍

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...