A glorious weekend in Auckland...

Wow!!! What a glorious weekend we have had - both Saturday and Sunday! Both days I have sat out on the front deck soaking up the rays. Makes me so grateful to be alive and doing so well!!!! In between enjoying the sunshine, I have even been a little productive. I was given some swinging baskets on Friday (thank you again missy) and so I was a little impatient to get them sorted so hurriedly brought a few plants and popped them in and quickly hung them up out the front. This is my new little piece of paradise simce our back area is such a mess and so I want it to look pretty. Will be better once the plants grow and you can actually see them...

Even the cats are enjoying soaking up the sun 😎☀️🌞

 

And today while I was sitting out here I suddenly felt the urge to go out and get myself some summer clothes. I dislike shopping immensely and of course the end result is always that I end up with aching feet but I had a couple of vouchers in my purse so I was out that door before I could talk myself out of it...

I slightly overspent more than the vouchers but what the hell, I don't often spend money on myself so I am super happy to say I have come home with a bit of a stash. And yup...my feet are hurting but the weather is so damn beautiful, I just don't care. Roll on summer I say. I am so excited for it. I missed out completely on summer last year as I was either recovering from my double mastectomy, recovering from the horrendous infection I had or in and out constantly of hospital/s (juggling between North Shore and Middlemore).

We have even been for our first beach trip to Martins Bay last weekend on Sunday (Labour weekend). Just hubby, older child and myself. Child and myself went for a swim - freezing bloody cold but completely invigorating. Unfortunately when we got out, I decided to lie down on the grass to dry off, so I was flipping from back to tummy, back to tummy and when it was time to get up to pack the car up and come home again, it was 'ok' - I was as slow as an ol' turtle but when we got home (an hours drive) - I was in pure agony...obviously I am past the days of lying on the hard ground plus sitting in the car for any length of time also takes its toll on me. In general it is hard to get up out of a seat but hey, thats ok...

Goddam, it is good to be alive - funny how your attitude perks up when theres a bit of sun...

Sunday 30th October 2016 - 3.31pm

Not such a good day...

Have had a rough few days but without trying to let it show to anyone...I am so over the cancer thing.  I feel like my life is consumed by it at the moment - I wonder if that thought will change as time goes by.


A combination of things have set me off:

• I joined a closed group on fb for those with metastatic bc and it can be a little overwhelming to see some of the posts.  They are a mixture of good and 'not so good', but it is definitely a great tool and support network for any queries I may have, or may want to get something off my chest without posting it on here where loved ones can see and read it
• I attended a webinar on Tuesday night for those living with advanced bc (it all means the same - metastatic / advanced / secondary / incurable / terminal)
• I have done a video for work to put on their fb page and other social media, and I was sent a copy of it to watch and listen to yesterday afternoon.  I cried my heart out after I watched it. I hear myself saying those words, but to actually see myself say them, and to see myself get upset - its a little confronting.  I certainly don't regret doing it - its far too important to not share it.  I am kind of dreading it being put up - to opening myself up so widely in such a visual way to firstly, people I work with and secondly, to complete strangers.  Words on paper is one thing, but to be able to see me visually is something different. 
• And then to top it off, a lovely gentleman whom we had dealings with through work passed away very suddenly yesterday morning.  My dealings with him were quite minimal but it was such a shock to hear, and it has brought home my own mortality

And so at the moment, I am in 'shut down mode' and don't feel very sociable.


I feel so resentful that this has happened - and I want to bury my head in the sand and forget forever it is happening.  IT IS SO DAMN UNFAIR......................


On the plus side, no side effects from yesterday's infusion, apart from feeling slightly stiffer than normal in my joints but that is easily dealt with.  Thank goodness for no more awful side effects.


I need to try and remember there are always positives and at times we all need to be reminded of them.  But unfortunately today, its not quite helping with the feeling of self-pity and I just keep thinking I AM GOING TO DIE OF THIS SHIT DISEASE AND I DON'T KNOW WHEN...and how much pain will I be in and what indignities will I have to endure...


I just want to break down and sob my heart right about now...


Does this get better as times goes on and I get 'used' to it?  I am going to drive you all insane as well as myself.


Sorry guys...


Thursday 20th October 2016 - 1.26pm

Oncology appointment - 19 Oct 16

Today was my oncology appointment before going to have the infusion and hormone shot. It was great that we pretty much got in on time or so it felt like. Not too much happened which I expected. My baby was my note taker today as my mate had work commitments and she did a bloody awesome job.

I asked about the aches I get in my back, how my feet throb but forgot to mention that my hands can also get quite sore. I had always put it down to the exemestane tablets I am on, but she said it is probably a combination of everything including the zometa infusion. But its copable, so thats ok. A lesion had been picked up on my lung at last CT scan which they were pretty sure it had nothing to do with the cancer and they still maintain that. They will check it when I am due to go for next lots of scans but at last acan, it was very miniscule. If it has grown in that time, it could potentially be cancer. They don't seem too fussed, so I'm not either.

I have had a slightly sore right neck gland and sometimes I can feel it when I swallow, so I queried that today as well. I had gone to my GP when I first felt it but that's as far as it went. Because it has been on and off over a period of a few months now, I thought I should question it with the cancer doc's. The oncologist (a different lady today) said she could feel something, but when I turned my head either way, she couldn't so she says it isn't a swollen gland but there is so something there. Nothing has shown up on scans but she has made a note of it and they will keep an eye on it. While I don't feel the need to panic about either of these things, a part of you does wonder, "shit has it spread" but I just don't see the point in worrying until I have something to worry about.

And then basically it was time to wander down to acute oncology for the infusion. Hubby stayed out in the waiting room, sitting himself into a nice comfy lazyboy chair while young child and I were escorted into a room on our own. Usually, I am in a room with lots of other people but they were super busy today. I had a lovely young nirse, who I have had before. We both recognised each other, and so we joked around and had a few laughs.

Young child was taking pics of me and instagramming them...no, thats not it...what is it dammit...oh yep, snapchattimg. Got a message back from younger niece (16) in Australia - cute.

Waiting, waiting, waiting...

 Flushing line before starting zometa...

Feeding me to keep me happy while hooked up...

                                                                      Young child and I amusing ourselves while being 'infused'

So thats another infusion over for another 28 days. Next one is 16th November. Hopefully no side effects - I didn't last time, so should be all good. 

Wednesday 19th October 2016 - 8.08pm

I am just me

I have been away for the weekend with my close mate down to Hamilton. It was a chance for the both of us to just have some quiet time, for ourselves. I think we are both the glue who holds our families together and I was given this opportunity by her to 'unstick' myself for a while. It was lovely. It was away from Auckland but close enough that it didn't take the bulk of the day to get there. We had a wonderfully huge suite holding two queen sized beds along with a lounge suite and dining suite.

We were a hop, skip and a jump from the casino so were able to go and have a flutter both Friday night and again Saturday afternoon. I was crap at it, so have decided that will not be my new hobby - too damn expensive for a start off! But it was fun to give it a try. We had a pedicure, and if you know me, then you know how much I hate feet, regardless of whether they are mine or anyone else's. I refuse to touch anyone's feet and I don't like mine to be touched. So for me to have a pedicure / foot massage, then you know my feet must be bloody well aching something chronic...and you know what? I LOVED IT!!!! And I am going to have one on a reasonably regular basis. My feet throb terribly at times, from the meds so this can be a little treat for me. Never ever thought I would hear myself say that...so now back home again to reality. Back to work tomorrow for another week of work, but with a few appointments. Have to take hubby to the eye clinic tomorrow for a check up. Hope they stop soon. Its tough enough taking time off work for my appointments let alone his as well but the one appointment his brother took him to, I was wondering the whole time what was happening and it was driving me crazy not being there!!!

And then Wednesday is my next oncologist appointment and infusion. Not expecting too much as I haven't had any scans lately so it will be more a case of how am I doing etc. (I'll probably update after  it).

After talking at the breakfast last weekend, I had so much positive feedback. I have had people say to me that I am an inspiration and my sister calls me her hero. And with being away this weekend, my mate and I had a good chat and she was commenting on the grace and strength I have shown after being diagnosed. She says I don't see what they all see, and she's right - I don't. I always say "I am just me". I'm not a dramatic sort of person (I don't think), I take it all in my stride and what the hell is the point of panicking about shit, it doesn't change anything and that just sucks up all your energy and these days I need all the energy I can muster. Of course there are days when I feel really pissed at the world and feel sorry for myself but you've read it already, so you know - but I do feel a bit pathetic
and self pitying and I really dislike it when I feel like that. So many out there who are a lot worse off. "Reality check Tania" look at the positives - life is too short to dwell on the negative - remind me from time to time...

Sunday 16th October 2016 - 9.33pm

My chance to speak out

This morning my work held a pink and blue ribbon breakfast. Blue ribbon for prostrate cancer which is the biggest killer of men in NZ. I was invited to be a guest speaker and I happily accepted. The idea was to wing it, and then on Friday afternoon, I decided to write out what I was going to say, and then when the time came, I was so confused about what to do, I decided to wing it and use my writings to prompt me.

I didn't look at my paper once. As soon as I was introduced, I had a huge lump in my throat already and I hadn't even opened my mouth yet!!! Its still amazes me that when I utter the words "I have breast cancer", how emotional I get.  Everything I wanted to say left me and I didn't say half of what I wanted but I guess the most important thing of all, is how people need to be educated on symptoms etc and I was really getting into the swing of that!

Hopefully I can upload the video that my baby took on her phone. The first part is missing and she has had to cut it into two short versions so fingers crossed I can upload them to here for you to see. Its a bit hard to hear in some parts but please just bear with it. I think when it begins I am explaining that I had cancer in both sides...

It is super strange to hear yourself speak - is that how I really sound? But I am so glad I did it...I am so fired up about people learning about this goddam disease and if it has to be detected, early detection is the key...

Sunday 9th October 1016 - 12.44pm

When I try to play the video's, it say an error has occurred. I'm tecnologically challenged so I'm not quite sure how to fix it. I'll see what others have to say, and may have to end up deleting them.


Tuesday 11th October 2016

I have ended up deleting the videos as the two options open to me to get them uploaded each held a drawback as far as I was concerned (thank you Kirsty for your help and advice). All I know is that being given the chance to speak to others about what I have been through was a wonderful experience even though I choked up (I hate it when I cry!). Being told my cancer has spread has frightened me more than I can ever really verbalise, even if I have been told I could live for years (but thats part of the unknown isn't it) and my story could have been completely diffferent if I had gone to the doctors when I discovered that lump. If I can make a difference in someone else's life so that they don't make the same mistake would be absolutely amazing.

6.01pm - 11/10/16