My story is not so much different to the millions of other stories out there. I used to think I just ‘got lucky’ in my battle. Until a wonderful friend pointed out the words of a rather larger than life character, Margaret Thatcher.
“I wasn’t lucky. I deserved it.” – and those words, I’ve taken on board, so to speak. I didn’t sit idly back and let cancer take it’s course. I did fight. Every day. Sometimes with faith and sometimes with tears but I still fought.
So, my story…. I hope in some small way it reaches the heart of even just one person fighting the battle and shows them that ‘cancer does NOT always win’. No matter what the odds are there is always, always hope.
I was initially diagnosed at the grand old age of 33, with stage 1A cervical cancer in January of 2008 after having various problems with my ‘woman’s plumbing’.
Not too much of a drama with that diagnosis – it was scarey for sure, having lost friends and family members and, at the time, seeing my mum’s best friend in the battle of her life. But with being such an early stage I wasn’t overly concerned. There were tears but mostly a lot of shock – thank god for having friends close since my family lived an hour’s drive away. After the quick treatment discussion with my doctors in Palmerston North (new Zealand) it didn’t seem like such a glum outlook.
I was scared – no doubt about that – but my fear then wasn’t that I was going to die, merely that I’m the world’s worst sufferer of pain, and needles and I do not have a close relationship.
A week after diagnosis I was told that my treatment would have to be in Wellington as gyne cancers weren’t treated at the local hospital – Specialized machines needed blah blah. It was about then that the cancer brain set in – maybe this wasn’t going to be as easy as I thought.
After a month of waiting for treatment to be planned I started off to Wellington. I go with my boyfriend at the time for the ‘big treatment plan’ unveiling. THAT is when fear really decided to find a perch in my head! The ‘quick look’ they’d taken
had revealed that ‘the f-cker’ had been masquerading as a smaller tumor than initially thought. It wasn’t even close to the 2cm x 3cm ‘piece’ that they could see. Ohhhhh no -It was a monster f-cker – 8cm x 5cm x 9cm and it was fierce.
To say my ‘upgrade’ was a shock is a massive understatement. Granted, my radiation technician, Jamie, slowly gave out the information. His biggest statement was still to come. I can still hear the words, “we’re so sorry, we’ve found it to be
more invasive and aggressive than first thought. Justine, you need to go home and order your affairs. You have stage 4A cervical cancer. There isn’t much we can do”.
Well, thanks for that Jamie. I think it took 2 seconds to find words. My boyfriend was crying, (he was of the ‘sensitive’ variety). But me, aside from the obvious shock – the next words out of my mouth have become legendary….. “Be f-cked! You can’t say that! My mum’s coming to the next appointment – you’ll just have to figure something out!”
The rest of that visit is a blur. I do remember he sat straight backed for the rest of the time – but the words he said – no idea. We left the hospital and had a rather somber 2 hour journey home.
From memory it took them a week to come up with a ‘new’ plan. Bless them, they had no idea what to do with a tumor of that magnitude but, still, they came up with a plan.
I started chemotherapy – cisplatin – quite possibly the most evil drug on the planet. Weekly massive doses, with the hope they could shrink the tumor to a more managable size and possibly operate.
There are not many words that can begin to describe what it’s like to be pierced so many times in a week…. Blood tests to monitor levels…. To make sure my body was strong enough to cope with the next lot of chemo. The chemo needles themselves – slightly larger… and (makes me squirm just to remember and my hands flinch unvoluntarily) I had to have them in my hands. The lovely juicy vein that runs up the arm for most people, I didn’t have them. Ultrasound showed that they curved under the muscle. Awesome!
The plebotomists started to fear me. Could see them all finding something to do when I had to go in for tests. Poor lil buggers. It was as frustrating for them to have to ‘stick’ me three times and still not get a vein.
Apparently, very few people feel continued pain once the needle is in the vein. Lucky me – I was one of them. Each stick was like molten lava stabbing into me.
For all the good work that the plebotomists did trying to find a vein, they weren’t a patch on my chemo nurse – whose name I can’t even remember but I think it was Anna. And she was a gift from the gods. Every time, first time, she got one of the little veins – some days along my thumb (wouldn’t recommend that one) and chemo was begun.
Is weird to sit there in the chairs in the chemo day unit. You can feel an icy coldness taking over your arm. You can’t go far. You’re hooked up to a ‘contraption’, delivering the evil power of the drug right into the veins where it’s needed to travel around the body and battle for you. You really just want to get up and walk out – be lying on a beach in some tropical country with vodka and a good book. But no, you’re trapped in the sterile oncology world.
Thank goodness for the other people in there with you! Doesn’t seem so bad when you’re not the only one. I always found it odd though that if I’d just drunk the chemotherapy drug odds are it would’ve killed me. But stick it in a vein and you’re
good to go. Well, good to go I would’ve been if I hadn’t started vomiting ten minutes after they started the drip – that didn’t let up for the 4 months I received cisplatin. The anti-nausea medication – what a crock. I vomited those pills straight back up. Nothing worked. Couldn’t eat, couldn’t drink (a big no-no, you need a lot of water to flush that cisplatin outta ya). Chemo was hell. No doubt about it. At least it was only once a week.
Radiation was daily but wasn’t as overtly evil with it’s repercussions. Just a steady fatigue starts to set in. You really do get ‘bone wearing’ tired. Combined with the chemo effects I thought I was facing the worst of it all.
I was altogether quite wrong. What with the vomiting and the constipation (that’s just so bad I’m not even going there) and the needle sticks, I didn’t think it could get much worse. I was tired, VERY cranky and hungry! My body wanted food but nothing would stay in – then came the lactose intolerance – like it wasn’t hard enough as it was!
Projectile vomiting is something I wish upon no-one. Especially when it’s constant. And what is with those little puke buckets they give you? Seriously? Get me a bucket thanks. I lost about 40 kg’s in 4 weeks. My body really did start to shut down. It was then that they unveiled their biggest ‘weapon’ to attack my tumor.
Those words truly deserve a line all to themselves. Really they deserve another line. Full of swear words. Bracchy is close to the most extreme pain I’ve felt in my life. At the time it WAS the worst pain but this lovely cancer journey served me up
a ‘better’ pain later.
Brachy therapy is an internal radiation. Aimed to get as close to the tumor as is possible. The method of insertion is so bad they knock you out for it. Then CT scan you when you’re still out to it to make sure it’s in the right place. Metal rods are inserted (cringe ladies)… and tubes come out which are connected to a machine, which then pumps radiated ‘stuff’ around the circuit. Generally, you’ll wake up just as they’re starting to pull out the 50 billion metres of wadding they’ve stuck everywhere to keep it all stable – don’t want any accidents you see.
I was never lucky enough to wake up that far through the process. Due to the crazy amounts of pain the tumor was causing by cutting off nerves and pressing into my spine I was on A LOT of morphine. Oxycontin was my friend. Not much of a friend but, none the less, a help. So my drug tolerance was really high. They never gave me enough to knock me right out. Not their fault. But it sure seemed like it at the time.
They say that the removal of the rods is the equivalent of birthing 3 kids back to back with no pain relief. I can’t compare – I’ve never had kids. But if that’s the case all you wonderful ladies who give birth drug-free are, in my book, absolutely
heroic. Also kinda crazy but, hey, it’s just my opinion.
I don’t recall exactly how many trips I had to A & E while I was getting treatment. The four months of chemo, radiation, and brachy seemed absolutely full of them. Was at least every second day I’m sure of it.
Wellington hospital A & E staff – they deserve ‘big up’s’. They bent over backwards to get my pain under control. Even going so far as to order in ketamine for me. That was the one day my pain went away. Thank you God for horse tranquilizers. Apart from that one time the pain never did get entirely manageable. Passing out from pain is a wonderful bliss. Until you wake up. Then it’s right back where it was. Fantastic stuff. I wish no one that experience.
The pain medication caused it’s own set of grief. Aside of the fact that I needed a diary to keep track of my pill consumption – how much liquid morphine I’d had, how many oxycontins, and oxynorms, the anti-nausea medication. It was never ending. According to my diary the worst time was when I was taking 93 pills a day PLUS liquid morphine every hour.
Not pleasant. The consequences of all those pills and the cisplatin were to have far reaching consequences.
I made it through treatment, something I knew I could do. My God is a good and kind God. I didn’t (for very many moments) think I was going to die. I knew it was going to be tough. But I didn’t think it would kill me.
I thought I’d done the hard yards. That now was time to recover. So off home I went. Mum drove, I remember that much. And then I think I slept all the way from Wellington to Wanganui. Pretty sure I vomited as soon as the car stopped. Awesome!
The side effects of chemo take a long time to leave your body. A LONG time. Months. But the bonus is the vomiting eases off when you’re not getting poison injected into you on a weekly basis. I was fortunate. I went to my parents after treatment. Had caregivers to help me shower. Had my parents to cook and clean for me. I slept. For months.
When my body did start waking up, I noticed more pain. Different pain. Lethal evil pain. And all kinds of weird things going on ‘down there’ – a lack of bladder control, no bowel movement without 50 litres of laxative, (they should try to make that stuff taste better). After SIX months of complaining to my doctor (who told me I was being stupid when I said I thought I had a fistula), Wellington finally listened.
And yes, I did have a fistula, the adult diapers (no room for dignity here folks) were not part of my imagination – I did need them. A scan showed that my bladder had ‘what appeared to be’ a 1cm hole. No worries they say – simple 3 hour operation and we’ll put a Winnie the Pooh plaster on it and you’ll be good to go.
Yeah nah. They were very, very wrong.
What the scan failed to show was that my bladder was actually ripped nearly 90% of the way around. Pretty much like how you’d cut a grapefruit.
Because it was incapable of doing it’s normal function the pee had to go somewhere. Gravity helped it force its way through my vaginal wall making what is known as a fistula. A hole. A 5cm hole. Again I say AWESOME, and thanks for listening to me six months ago.
Bear in mind I’m asleep while all this is going on. Having a nice nap thanks to the anesthesiologist. Meanwhile the doctors are working frantically. My bowel was perforating – thanks to all the pain meds and resulting constipation. They removed
large portions of my bowel that had died. Luckily for me they managed to do it without me getting ‘mess’ everywhere.
My right kidney was totally blocked. Useless. The left one was on the way out. It now has lovely little plasticy things in there helping them both to do ‘their thing’.
The doctors saved my life twice that day. My chest hurt from the defibrillator. Wouldn’t recommend that to anyone either.
I remember waking up in recovery screaming. That drug tolerance thing sure didn’t help me any. I don’t remember waking up the first time in the ward. I do remember seeing my mum and dad and boyfriend. Seeing the fear and relief on their faces.
I was still here! Oh lucky day! Then I remember my boyfriend holding my hand and telling me I’d be in theatre for over ten hours. Nearly 20 surgeons had worked on me that day.
And the biggest revelation. I now had two stomas.
I now had a colostomy (who I call George because boys are little shi-ts) and a urostomy (Mildred) with an illeal loop. Pretty fancy stuff. Ground breaking surgery – double stoma’s – not pleasant. There’s just nothing cool whatsoever with having a
bag that contains your poo permanently attached to your stomach. The pee bag. Meh, I can handle that.
The colostomy. I hated it. Now I’m used to it. It’s a normal part of my day. Can’t say I’d be sad to see it go. But, for me, a reversal is very unlikely. It took a long time to terms with the stomas. I’m vain enough that having them affected my body image. Counseling helped. Now, they’re my badge of honor. Proud flesh – just like on a scarred horse. There’s over 2000 stitches went into my stomach area to keep me here on this planet. An amazing quilt really.
I was fortunate. I had good surgeons in the hospital that day. Without them and all they did I wouldn’t be here. I thank them for that.
That was where I thought the story would end. That life would gain some semblance of normality and I’d just tick along making allowances for my body where I had too. Silly me, I was wrong.
In January of 2010 the lump I’d nagged my doctor about for two years finally caught their attention. Granted they were so busy dealing with my ‘terminal cervical cancer’ I’ll give them a break.
A mammogram was scheduled and, hello, what’s that? Stage 2 breast cancer you say? In the lymph nodes you say?
Well, f_ck you, cancer!
A week after my breast cancer diagnosis I had a mastectomy and all the nodes removed from my arm pit on my left side. It all happened so fast that I don’t remember too much. I do know that breast cancer and the resulting surgery cost me no time. Just a stiffness like a really good gym workout.
Now I have a fantastica scar on my chest that, if I’m in a funny mood, I will say is ‘where the shark got me’.
Losing my breast has meant little to me. Aside of the fact I’ll get a brand spanking new set as soon as it’s my turn on the reconstruction list. This battle was easier. The ‘intruder’ was gone. Removed. In one foul swoop. I elected to have chemo again. Some crazy weird combo of drugs. One of which is bright red. I visualised the ‘red dragon’ coursing through my blood stream attacking any residual cancer cells.
It seems to have done the trick.
Here I am. A year later. Getting stronger every day. Laughing, loving my life, my friends and my family. Here enough to start up a page on facebook. (A real life saver when you can’t move too much! Yay! The internet gods).
And that, my friends, is my story. Officially, I’m now in remission for both cancers – both primary cancers not secondary.
I am a very fortunate girl. I had amazing and overwhelming amounts of love given to me. Prayer circles around the world – that blew me away. Thanks to all those who prayed, rang me, wrote letters, sent well wishes and offered their healing magic.
I wouldn’t be here without you all. I have no doubt that I was strong enough to have done it but, without the love, I know it would’ve been harder.
I had so much to live for. I still do. My life is precious. If it’s inspiring to someone, then that is awesome. And my work here is done.
I know there’s a lot of interest in my cancer journey because of all the surgeries (33 and counting), the medical side of it all is fascinating. It has been one of the darker journeys through cancer. There are very few (thankfully) who will go through what I had to. But in the end it’s okay. It’s a ‘happy ending’ story.
The coolest part is that cancer renewed my faith. In me, in humanity, and in how far people will go to help someone. And in love, love really is enough.
To those fighting the battle, don’t quit. Find something to live for. Cancer can only harm your body, never your soul.
So love it up, laugh it off, sing really loudly even if you suck as I do at it and live it true….. cancer does NOT always win. xox
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.