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...