Left: Primary Pheo 2014, right: lymph node metastases 2018
I never thought I’d open a ‘compose’ page on this blog again. I had reached a point in my follow-up where I was at peace with leaving it all firmly behind me. I had spent 3 and a half years learning to come to terms with it all….and of those years it took approximately 2 of them to stop googling, stop worrying, stop obsessing. I found a silence I had been craving, like the cranking of my ‘cancer thoughts’ had finally ground down to a halt. Then on February 19th 2018 I had a call from my specialist that brought this whole sorry business crashing back into our world.
Here we go again
My endocrinologist, Mike, has never called me out of the blue so I was surprised to hear his voice. After the initial pleasure to hear from him (he’s such a lovely man), suddenly my heart sank; this can’t be good. A week previously I had what was supposed to be my last follow up MRI scan from my primary cancer in 2014. I had seen him a few weeks before that and he had said he was pleased with the results to date and was ready to give me the ‘golden handshake’ once these ‘final’ test results came through. We all expected them to come through clear.
An elevation in my plasma metanephrines (blood adrenaline levels) alongside findings consistent with tumours in my MRI scan pointed strongly towards metastases in my lymph nodes. Mike said I had already been referred back to my surgeon and talk of a PET scan had been initiated to confirm this is actually a cancer recurrence, as suspected.
Sitting at the kitchen counter as I put down the phone, numb and shaky….my mother in law puts her arms around me in a tight hug. No words necessary, she knew. I stare at the scrap of paper in front of me I had blindly written some notes on: ‘2cm…..para aortic lymph nodes…..at least 1….mets elevated…..Adam contacted (surgeon)’. There was this ringing in my ears, a thick cloudiness filling my brain. I could hardly articulate what had been said as it just didn’t seem possible. How could this be? Life had been so good! So damn good. Since the curve balls 2014 threw me, I had got engaged to the love of my life, we got married, got pregnant (after a bit of trouble) and had the most beautiful baby boy Hugo who lit up our world even further. There simply was no space for anything negative in our lives.
After news like this, time slows down to a painful pace. The way you control your thoughts is key to moving forwards. We had been led to believe that it was extremely unlikely that this cancer would return….that I was one of the ‘lucky ones’. To get my cancer as a primary was a one in a million chance (lucky? Go figure!)….then to get it back as a metastatic cancer was one in something like 4.6million. Unlucky, fact! Metastatic Pheochromocytoma: totally different ball game. So much more to learn. I could feel myself losing a grip of my thoughts already.
Language makes such an impact on this journey. One of my earlier chapters is called The C-Word….’Cancer’ falls on you like a tonne of bricks when you first hear it. You become as comfortable as you can be with that word….then ‘metastatic’ and ‘malignant’ are dropped in and you have yet more of a burden to carry.
Dr Google suddenly becomes your best/worst friend again….shit your pants time, if you believe half of what you read. 5 year survival rates jump off the screen in giant red letters….panic creeps in – am I really at this point?? Morbid thoughts engulf you….you look at your baby playing innocently next to you and wonder what the hell kind of world you have brought him in to. This just isn’t fair – he deserves to have a healthy mummy, not a mummy with a percentage survival rate stamped on her forehead.
You know you’re jumping the gun….nothing is confirmed. But the world doesn’t seem rational any more….so why should I be?
The Dark Side of Cancer
Sometimes, one of the biggest problems with a cancer diagnosis isn’t actually the cancer itself…..it’s the way it forces you to look at life, the thoughts it puts in your head, the conversations it forces you to have, the decisions it forces you to make. These things can’t be undone….and these psychological side effects can be just as damaging as the physical.
Just when I thought things couldn’t get any worse, life sent another curve ball careering our way. At the end of that shattering week, I felt hormonal/hungry/tired and I was also late (stress can cause this, of course) so I took a pregnancy test to eliminate that extra worry from my boiling pot of stress.
My heart plunges to a point I never thought possible. WTF?!
I gaze at the firm double red lines….there’s no mistaking it. No squinting at imaginary lines in the light of the window as I had done so many times in the past trying for a baby. This was a BFP….a baby! A sibling for Hugo! Another light in our lives! Unplanned, beautifully spontaneous….but no, my heart felt heavy. I know deep down this isn’t the good news it should be. I’m due to have a PET scan in the following week or so, to confirm the nature and exact location of this cancer, making it possible for my surgeon to operate. PET scans are radioactive and harmful to a growing baby. No PET scan, no operation. So now James and I are presented with one of life’s most awful decisions: my health, or the baby. You seriously can’t write this shit….which is why I am.
A moral dilemma that I really don’t think anyone who has a decent moral compass would find easy to solve. There is no solution that you’ll feel 100% comfortable with….have no regrets. Unfortunately this is something we would have to live with either way. The idea of being forced to say goodbye to yet another baby as we had already done so many times in our quest for a family filled me with utter dread. It made me feel sick to the stomach.
It took us over 2 weeks to decide. In that time I had to endure a scan and see the flickering heartbeat of life that would usually fill me with joy, cut me like a knife. I have never felt more bitter. I have never felt blacker in my life. Why would I have to deal with all this at once? Why???
I had a meeting with two of the high risk pregnancy obstetricians at Auckland Hospital to discuss our options: yes I could continue the pregnancy but not without risks to me and the baby….they both sat and looked at me with such sorrow….I wanted to beg them to make the decision for me but I knew that professionally they can’t. The awkwardness in that room as I agonised over my options….all they could do was nod and sympathise. I left there feeling even more confused. A week later I was still at a loss. James and I had spent every evening talking through all eventualities from the most positive outcome to the most grim….all possibilities. Awful for us to be forced to speak in this way but the idea of James potentially being left with one baby to bring up alone without me is bad enough, let alone two. I had received excellent but varying advice from my surgeon, obstetricians, my fertility doctor, midwife, friends, family….and finally I sent quite a direct email to my endocrinologist in the hope of some direction from him that might lead us out of this spiralling confusion. His reply helped us to confirm that my future health is really not worth messing with. In my case, pregnancy could push the tumours along, delay my treatment and ultimately put me at risk of progressing the disease to a more advanced stage than it needs to be. Time for me to face the reality of this sorry situation….and be very brave.
I had the termination a week later. It’s not something I want to write about…it broke my heart. It’s not something any woman should ever have to endure. I’ll only say this: there are so many different circumstances for termination and no matter what anyone says, the woman never really has a choice in the end. Not one of the women looked happy to be there. It’s such an incredibly sad place and I commend the doctors and nurses who work there supporting these women and perhaps their partners too. To end up there, doing that….it’s one of the hardest things in the world for a woman to do and whatever pushed her to such a decision was clearly a worthy reason. End of.
PET Dotatate – Official Diagnosis
The PET scan was booked soon after. Through the sliding doors leaving James behind; he’s not allowed due to radiation exposure. Robe on, they pump some radioactive fluid into your arm and you’re sent through to the CT scanning tube to light up like a Christmas Tree….or not, you hope! But you know why you’re there, you know there will be at least one flashing bauble there somewhere. Arms above my head like I should be basking in the rays of the sun rather than the magnetic CT rays, I spent the entire 40 mins concentrating on the numb sensation creeping up my left arm whilst absently listening to instructions for breath holds through the headphones. You might call it some form of meditation, or perhaps just complete mental detachment from a reality I’d rather not be in.
The results confirmed exactly what we already knew. Yes, it’s cancer. Yes, the tumours are in my lymph nodes. Yes, it’s operable.
My surgeon Adam delivered the results, who by now 3 and a half years after first being looked after by him, we know pretty well….we could read his body language as he stood in the doorway to his office welcoming us in. Smiling, positive, reassuring. This stuff makes him tick, this is where he really makes a difference on people’s lives: it’s operable and it’s a bit tricky so he can definitely fix it. Already I feel comforted to be under his care, his confidence is reassuring – and he did such an outstanding job last time that I have no shadow of a doubt he will get me through this again. With the help of Bugs…my lovely Anaesthetist from last time.
Adam tells me one thing I can do to prepare for surgery is to get my lungs strong by climbing a hill every day. Last time, I ended up with fluid in my lung post surgery so I desperately want to eliminate the possibility of this complication again. So like a good obedient patient I climb One Tree Hill daily leading up to surgery….pushing an 11.5kg baby plus stroller….with hill repeats at the top. All whilst taking alpha/beta blockers that slowly drain all your energy….oh and make you slightly incontinent as I found out as I reached the top of the hill one day, oh the joys! Texted Bugs straight away telling him he should have warned me to wear some of Hugo’s giant nappies by now!!
My Dad came again to sit patiently at my bedside….Jacqui joining him this time to look after Hugo. My sister Sara was due to arrive to take over helping with Hugo after they leave. I hugged my baby so tight that morning, leaving the house in the dark just after he had woken up. Babies sometimes have this wise-beyond-their-years look….like they understand more than we give them credit for. Hugo looked at me a little longer than usual that morning and we definitely had a moment. Silent words and silent tears: ‘I’m not leaving you yet little man…..not for a long time. I’ll be back soon’. James drove Dad and I in the rain back to Mercy hospital where this all began 3 and a half years ago. We go up to the same ward, see the same nurses, the same operating team, go up the same lift in what could be the same bed with my Dad and James following exactly the same route. Action replay.
Whisked into the recovery room and I say goodbye to Dad and James…..I have a flashback to last time when I really thought this could be it. I was quite terrified last time, really emotional….this time there are far fewer ‘unknowns’ that there were last time. Sure, I’m nervous- who wouldn’t be when you’re about to have your insides pulled out?! But I take it more in my stride and feel strangely calm.
Last time, the last thing I remember is Bugs taking my hand for a little injection. But this time I remember quite a bit more – I remember going through into the bright lights of the operating theatre, leaning forwards to get the epidural put in and being wrapped up in a blanket with a giant tube blowing hot air up my tummy as it’s so bloody cold in there! A lovely nurse talking me through it all the whole time alongside Bugs’ reassuring voice. I dreamily look around and see so many people busy at work in this bright clinical space revolving entirely around me.
I’m in ICU, my Dad of course sitting next to me joking about how I’m drinking a cup of tea like a pro and you’d hardly tell I’d just been through major surgery. James is there, everyone jubilant. I’m under the influence of countless drugs with lines attached to me in every direction and reality’s not really hitting home yet. Memories are patchy.
Yep, I even had the same ICU Nurse….this really is action bloody replay! But I’m determined not to have the same gruelling recovery as I did last time. I’m sent down to the ward on my second day, a much quicker stay in ICU this time – already an improvement.
Wobbling to my feet for the first time, I take a cautious breath and grab the handles of the walker to set off down the corridor, day 2 and I’m sure I can blow this recovery thing out of the water. I’ve got a baby to get home to this time. A positive mindset is a powerful thing….I was up and down those corridors dragging machines and bags like a train and outta there after 6 days. Job done!
It’s over as quick as it began…you’re sent plunging into this world of scans, tests, hospitals, appointments, operations, tubes/bags/beeping machines, painkillers, laxatives, drains, shuffles/walks, physiotherapists, dieticians, help (so much wonderful help), well wishes, gifts, cards, freezer meals, family support….and seemingly no sooner than it all began you’re spat out the other side feeling like you were hit with a bus.
You’re on the other side looking back thinking, what the hell? Like a trampled butterfly you try to gingerly spread your wings and fly….but you’re fragile. A LOT has happened. However, you’ve got a baby, you’re a Mother….and no fragile Mother is ever a good role model. So you tuck away those withered wings and shrug on your hard shell. Nothing can break me whilst that boy needs me.
‘Tough times don’t last….tough people do’.
The Medical Technical Stuff
For those interested in the medical detail, here’s a brief summary of the cancer side of things. In 2012 I left London after a period of episodic attacks involving terrible headaches, palpitations, sweating, anxiety. NHS Neurology (mis-)diagnosed me with cluster headaches…..so, convinced I must be having some sort of nervous breakdown, I packed up my life and came Down Under. 2 years later in NZ, I was suffering recurrent UTIs for which I had an ultrasound scan, finding a 10cm tumour squashing my right kidney. This was then diagnosed as a rare form of Neuroendocrine cancer (NETs) called Pheochromocytoma. This type of tumour secretes adrenaline which would have been causing these episodes I suffered in London. The tumour was resected by Adam Bartlett in September 2014. Back then there was always a question over whether it was malignant or benign. Its size suggested malignant but there’s no way of defining this under the microscope as this cancer is so rare and behaves very differently to most other cancers. Follow-up by the most experienced Endocrinologist in New Zealand, Mike Croxson….3 and a half years later I went for what should have been my final round of testing that found metastases in my lymph nodes. Since this recent surgery I have finally had the opportunity to meet with an oncologist who specialises in NETs, Ben Lawrence. My primary pathology has now been reviewed and the tumour was found to have a PASS score of 11/20 (4 and upwards being malignant) and it showed evidence of invasion which would have led to this recent metastases. Currently it’s slow growing which I’m so grateful for, however NETs are quite unpredictable so surveillance and follow up is very important. Ben pointed out that they can’t actually say whether it’s stage 3 or 4 as the nodes sat right on the boundary between regional and distant metastases. This makes for an uncertain future as if it’s stage 4 then it’s quite likely to return, stage 3 might or might not. There is no preventative therapy that works on pheochromocytoma so it’s very much a ‘sit and wait’ situation. MRI scans and blood tests will be a lifelong prospect for me….but I’m very grateful that’s all I have to worry about for now – and hopefully I can really say this is the last chapter.
Special thanks go, as always, to my friends and family. So many of them dropping everything to be there for us through these shitty times. Friends turning up to see me during recovery at hospital and at home, looking after Hugo whilst I’ve had appointments to attend. Dropping off meals, flowers, gifts. Texting or FaceTiming from afar so I feel like they’re right there close by, supporting me. Each and every one of you who touched our lives during this time played a part in helping me recover faster, getting back to being a capable Mummy to Hugo….so I thank you all from the bottom of my heart.
Adam and Bugs….my Dream Team! Twice now these two incredibly talented physicians have pulled me through such difficult times, I can’t help but feel a special connection to them. So lucky to be looked after by such genuinely caring doctors who undoubtedly go out of their way for their patients. Whilst I hope that they will never have to look after me again, I know that I would get through it again easily with their care and expertise.
Last but not least, my husband. James, you are my rock. We certainly have had our fair share of challenges to tackle! Every hurdle, you just don’t falter. You are an outstanding role model for our gorgeous little boy to look up to. I’m so proud of us and our little family of 3.