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.