Campaigning Pharmac: This is my story
I am a daughter. A sister. A wife. A Mum. A Nana. I am 45 years old.
My life changed in March 2011 when I was diagnosed with breast cancer in my right
boob. I had 3 lumps 18,22 and 33mm, I had felt one at Christmas time and thought I had pulled a muscle or something because it felt just like that; longish and hard running along the edge of my inner boob close to the skin.
I had been going through an emotional time in March that year and I still always wonder if that had something to do with it, somehow triggering my cancer. There are a lot of ideas out there surrounding what causes cancer. Each to their own if you ask me.
I really had a battle on my hands – within 6 weeks of diagnosis I had a non-skin sparing total mastectomy and expander implant inserted, as well as my lymph nodes removed. (Yes, the results later showed it was already in my nodes) I am unfortunately one of those medical delights – If something can go wrong it will go wrong with me!
I had a fall (fainted) the day after my surgery and my husband caught me at the last minute so I didn’t bang my head but then the nurse pulled me up by my arm (literally). That did damage on the internal stiches and moved the expander implant, so I was rushed back to surgery about day 4 to repair the damage.
Infections – let’s not talk about that aye …………. Bad and continuous is all I am going to say.
I fought long and hard along with my supportive surgeon Vanessa Blair to get my other breast removed, when that was done, I felt like I was going to be OK no matter what.
I started Chemo (FEC-D) and I think tolerated that well. I became addicted to white bread with a mountain of butter and vegemite (I have always hated white bread haha). I continued to work in my job as a Contract Administration for the Transit NZ tenders up North. I was having Chemo on a Thursday and would be back at work on a Monday – super hero? No, I don’t think so.
If I had my time again, I would probably take the year off and concentrate on me instead of trying to continue to do it all. I had this feeling that I had to be super woman, super mum, super wife, I tried, and it nearly killed me.
When I was well and truly on the road to recovery, we started the inflation of the implants. This is not a nice experience I can tell you. It’s slow (50mls) and painful along with the 2.5hrs trip each way every third week to inflate – this didn’t go according to plan – I had to have a break while I was in Auckland doing 25 sessions of radiation which is a lonely place while I was there. My husband was at home with the kids trying to keep things as “normal” as possible. I made a couple of good friends down there and it’s nice to follow their journeys even to this day. Don’t get me wrong the Domain Lodge is a wonderful facility and
we are certainly very lucky to have it, I just felt so far removed from my family.
Anyway long story cut a little short so as not to bore you, fast forward a couple of years I had to have the expanders removed as the radiation had made my tissue very fibrous and “bark like” was how they described it when they were removed. I had new boobs made for me in a surgery that took 13.5 hrs in Auckland with my now plastic surgeon Alessandra Canal. She has been a God send to me and made my new boobs from my tummy (and I had a lot to use LOL)
So, since 2011 I have self-injected a hormone suppressant called Zoladex as I couldn’t tolerate Tamoxifin. 7 long years I’ve done that every 28 days, until recently. I’ve not long had Salpingo - Oophorectomy surgery.
And the story continues for me.
In May 15th, 2018 the day after my husband’s 44th birthday I was diagnosed with Stage 4, breast cancer - bone metastasis. I had gone to the ear, nose throat specialist about a gland that was pissing me off in my neck. Turns out the scan he sent me for showed up something in my C5 neck bone. More test and scans revealed I now have bone mets in my cranel vault, neck, shoulder, ribs on both sides, hips, pelvis and spine.
They say the median time frame for stage 4 breast cancer is 18 months in NZ. I was diagnosed about 7 months ago, I’m now 45 years old. I am pretty sure with my determination and attitude that I am not going anywhere soon!!
I belong to an online group called Metavivors, we are a group of mostly woman who all have stage four breast cancer that has metastasised to somewhere else. We have been campaigning Pharmac for an independent review of both the Pharmac systems, processes and how they decide on which medication to fund or not and the amount of time they take and also to fund The medication I need to hopefully extend my life which is called Ibrance – it is approved for use in New Zealand but it is not funded – hence the $6000 per month I pay for 21 pills. WTF I hear you say – yes, it’s true in other countries it is funded!!
Anyway, we did a BIG protest and petition presentation in October last year, to
no avail – A letter was sent out a couple of days before Christmas to say no. They may fund it as a first line of defense medication if you have had no previous hormone treatment – what a load of rubbish. Virtually no one would be eligible unless you were diagnosed with advance stage cancer de novo or had previously refused recommend treatment, as most breast cancers are treated with hormone treatment such as tamoxifen or Zoladex (If your cancer is hormone positive that is).
To say we stage 4 New Zealand patients have been dealt a shit hand is putting it mildly. On average a NZ stage 4 breast cancer person will die a couple of years before our Australian counterparts – what does that say about the NZ health system.
I continue to work two jobs. When either Ibrance is funded or my life insurance pays out early for terminal illness then I will need to keep working for as long as I can. I do find it better to keep busy otherwise what would I do?? Sit at home and dwell on what’s coming?
I also am president of the local Kaitaia branch of BPW (Business Professional Woman’s) club, which keeps me busy as we focus and try to help/ encourage woman of all ages, we are currently running as a club Days for Girls working bees where we make reusable sanitary pads and they get distributed to other countries in need and NZ. In the past the club has run sexual abuse workshops for survivors, wearable art shows etc.
Yes, I have a bucket list – we have even managed to tick a couple of things off already, but the main thing I have learnt that life is for living, you got to laugh, and love is a most special thing. Those who know me will have a little chuckle at this new outlook!!
Step outside your comfort zone, try new things, wear that bright dress you have always been afraid to, colour your hair in that wacky colour, tell that person you love them, let go of the little things and move on.
Through this journey so far, I have met some amazing people, many of whom I would say are now good friends and not just acquaintances.
When people ask how I’m doing because, “you don’t look sick” I just smile and say each day I am upright, and breathing is a bloody good bonus. I would be lying to you if I said I didn’t have “those days” now and again, and for the first time in my life I can unfortunately say I now know what a panic attack is, but for the most part I’m a positive go with the flow person just taking each day as it comes. I wish you all the very best in your completed or yet to come journey.
My story hasn’t been written to scare anyone, I guess you could say it’s just been my therapy to write this and to be honest after I had done the treatments back then 7 years ago, I never even thought about cancer coming back it truly never even entered my head. So, call me naive, or stupid but this did come as a big shock to me and it has taking a little time to adjust to the word’s “terminal”.
I do have a wicked sense of humor which has seen me through.
Love & light Donna MacMiIllan.