NET Cancer Awareness Day 2018: A timeline of metastatic Pheochromocytoma

Today is NET cancer awareness day – 10th November 2018. In order to help spread awareness I’ve written a timeline of my journey with this cancer. It undoubtedly shows how much life can be affected by a difficult to diagnose, difficult to treat but (usually) slow cancer. A little more awareness might just help someone reach an earlier diagnosis than I did; it’s the reason I started blogging. Early diagnosis is key for the best outcomes. Perhaps if my diagnosis had been earlier, I would not have reached the metastatic stage.

January 2012: 6 month battle with attacks involving severe headache/palpitations/sweating/shaking/vomiting. Numerous tests drew a blank so I was (mis)diagnosed with cluster headaches and injected with an anaesthetic/steroid cocktail into the base of my skull then sent on my merry way armed with a truck-load of sumatriptan self-inject medication.

August 2012: convinced I must be having some sort of nervous breakdown, I quit my job, packed up my life in London and headed Down Under….where I now live in NZ.

June-September 2014: recurrent UTIs, treated regularly with antibiotics.

September 2014: ultrasound scan to check kidneys, large 10cm tumour found above (and squashing) my right kidney, subsequent MRI scan and 24hr urine test confirms a diagnosis of Pheochromocytoma, a rare form of Neuroendocrine Cancer.

September 20-29th: alpha and beta blockers administered to block the effects of the excess adrenaline being secreted to prepare for surgery. When handled during surgery, the tumour could release too much adrenaline which can have life-threatening effects.

September 29th 2014: Right Adrenalectomy (resection of tumour including adrenal gland) by Adam Bartlett, liver surgeon. Surgery was 4 hours and involved mobilisation of the liver to locate the tumour.

The next 10 days: in hospital recovering from surgery, first 2 days in ICU. Hands down the most challenging 10 days of my life.

2 weeks later: readmitted to hospital for 5 more days with a pleural effusion, fluid on the lung requiring draining.

The next 3 years: surveillance and follow up involving annual MRI scans and blood tests after initial 3 monthly checks. All clear.

September 29th 2017: our baby boy Hugo was born.

February 2018: a proposed ‘final’ MRI scan and blood tests, hoping to get the golden handshake from my specialist (naive, in retrospect). Tests revealed metastasis in my lymph nodes. 5 days after this news I find out I’m pregnant.

March 2018: termination of pregnancy so that my treatment could progress after a LOT of soul-searching and decision making.

March 2018: GA68 PET Dotatate scan (a radioactive scan that locates Neuroendocrine cancer cells) confirms location of metastasis so surgery can progress.

April 5th-14th 2018: repeat alpha/beta blockers to prepare for surgery.

April 14th 2018: Lymphadenectomy (resection of affected and surrounding lymph nodes plus good margins of tissue) by Adam Bartlett. Entry through same L shaped scar, 4 hour surgery.

April 14th – 19th 2018: 6 days in hospital recovering from surgery, first 24hours in ICU. Still challenging but a much quicker and easier recovery this time.

May 2018: meet with my oncologist and I’m told that the cancer is a slow mover but stage 3/4 and it’s quite likely it will return. No chemo works on pheochromocytoma but there is a potential treatment (PRRT) I could be eligible for in the future if it returns, although surgery is always the treatment of choice where possible.

July 2018: first follow-up MRI. All clear.

November 2018: living and loving life as a mother of a gorgeous toddler and wife to the most amazing supportive husband.

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An Unwelcome Epilogue

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.

Positive.

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!!

Surgery

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.

Then nothing.

Recovery

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.

Thanks

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.

8. Closure

I arrived up on the Respiratory Ward with my heart hammering in my chest. Don’t be pathetic, I tell myself. It’s just a needle, then a tube….bingo, fluid gone! Nothing like what I have been through in the past few weeks! But after that experience of coughing up blood the night before, I just couldn’t nudge the anxiety aside.

The lovely lady-doctor who had instilled such faith in me earlier today was waiting in my room when I got there. Through 2 double doors into a low-pressure single room (yes, this is the public system and yes, I have a private room – welcome to NZ healthcare!), my rather-large-unit of a male nurse gently sits me down and reassures me. James standing on my other side, I feel like I have my 2 bodyguards beside me once again, and I feel a twinge of heartache as I think of my Dad. The doctor is arranging everything she needs on the bed behind me as she tells me to sit exactly as I had earlier on for the ultrasound scan. Deja-vu from the night before steps in….but this time she knew exactly how I was sitting to re-create it as she had been present during this scan. The atmosphere was different in the room….no fuss and rushing around with hasty words spoken, there was quiet and calm…and most importantly, my James had settled himself into the seat facing me and had taken both of my hands in his and locked me into his eye-contact, sensing my apprehension. It happened exactly as she explained it would earlier: sedative and morphine was pumped into my IV line, then local anaesthetic gently inserted into the area of my back where the drain would be going….then I felt nothing more than a pushing and prodding sensation whilst she inserted the needle then the tube around it. I felt nothing, heard nothing but the gentle voice of the doctor talking me through the procedure and James reassuring me…..then all of a sudden I felt an intense pulling and cramping in my back that catches my breath. Where the pipe had snaked its way around my side I saw red fluid bubbling and rushing down the pipe. James found it fascinating: laughing and exclaiming “Holy Shit, that’s a lot of fluid!!”. At first I also found it amusing, James’ jolly nature once again spurring me on….until I felt a tightening painful cramping in my chest, really rather unpleasant. Apparently, when a lot of fluid is released from the lung space, it can move too fast and the change in pressure is painful. So they literally turned the tap off behind me whilst I recovered momentarily, then continued with a slower flow and monitored my pain till they had drained off about 1.5 litres of blood-stained pleural effusion. The nurse holds up the bucket and asks if I want to take a look. My back to the door where he is standing, I decide that this time….no, I don’t need to see the gory details! I feel exhausted by it all, like the very blood of my being has just been squeezed out of me…and all I want to do is sleep. James leaves, I settle into a night trying to get comfortable with a tap sticking out of my ribs.

It’s very curious to be wheeled around on a bed when your legs are working perfectly fine. Throughout those days I spent at Auckland City Hospital, I wasn’t allowed to walk very far. Quite the opposite to Mercy where they were constantly trying to coax me to my feet to get me mobile and would have been simply delighted if I had had the spontaneous inclination to do so. Here, they wheeled me everywhere! Admittedly, I had an awkward little trolley attached to my pipe with a bucket of blood-stained fluid sloshing around in it…..but I’m certainly not one to be ashamed or embarrassed about these things so I would have quite happily walked.

But no….they pick you up for everything in the bed! I remember countless times being wheeled for an xay or a scan through the tall atrium of ACH gazing up at the photographs of hospital staff as I glide by, loaded up with my pipe and drain. I tried to memorise them each time, seeing their laughing faces and wondering what job they had – are they doctors, nurses, or perhaps a chef or cleaning staff? Each and every one of them have a vital and admirable role to play in the treatment and recovery of people like me. I feel humbled and thankful each time my bed rolls by their faces. I look up at the darkened bedroom windows in the atrium, see the silhouettes of patients in their beds….and wonder how many awful struggles people are having to contend with behind those panes…. so much suffering goes on behind closed doors. Times like this put everything in perspective, fact! Everyday trivial life struggles I would normally fill my mind with just don’t seem relevant any more.

Monday morning: I get awoken by breakfast, early of course. Then half way through hungrily munching on my toast and cereal and quietly contemplating how different this hospital experience is, (previously I would have turned green at the sight of breakfast), the door bangs open and in marches a very tall lady-doctor with her entourage of wannabe-doctors and apprentices: the Respiratory Team. Literally, there must be 6 of them in the room….and they all gather in a semi-circle around my bed as if examining their next specimen. Swallowing whatever I was currently munching on, I smile weakly at them all as she launches into her spiel. In a nutshell, my pleural effusion is too blood-stained to see WTF is causing it. And because I coughed up blood when the first sample was taken, they would need to take a look at the inside of my lungs to check for the worst case scenario, even though the blood was most likely caused but an accidental puncture the other night. I guess the doctors need to err on the side of caution after you have had a tumour removed, especially such a sizeable one just below the lungs. I was already acutely aware of the risks of spread to my lung, but the confidence my surgeon had that he had removed it all without chance of spread made me feel reassured. This was all procedure to eliminate all possibilities, that’s all. So part of this procedure would take place the following morning with a bronchoscopy. Basically, a camera down the lung to check for any nasties and the cause of my bleed. The entourage of doctors marched out as solemnly as they marched in….off to find their next specimen.

The next morning, no breakfast allowed, and I am wheeled (of course) down to the endoscopy unit for my bronchoscopy. No fluid had drained off my lung for a while now but they insisted on keeping the drain in, despite how uncomfortable I was. Lying constantly on an angle to avoid leaning on it was leaving me stiff and sore. But I was starting to feel so much better without the fluid so I could see light at the end of the tunnel! I wait…..and wait…..lying there on my bed in the endoscopy waiting area. Eventually I am wheeled in backwards and I immediately recognise the voice of the lady doctor from yesterday….it feels rather strange not to see her face but these are the joys of travelling around in a bed – you spend most of your time going backwards! I see the eyes of another doctor I recognise peeping out over the top of his face-guard, and a few of the other entourage members are lurking in dark corners waiting for the show. As soon as I’m in place, they pump my IV once again with sedative and fill my right nostril with a numbing gel using something akin to a lolly-stick. I feel like I’m at the dentist with a strange twist! Once lack of sensation is confirmed and I’m feeling a little woozy from the drugs, the camera is VERY quickly slid up my nostril and all of a sudden I feel a cold stick hit the back of my throat and continue on its merry way down to my lung. I have this uncontrollable need to cough and swallow….constantly….quite an unpleasant experience. I am amazed at how quick it all is though….no sooner are they in there, they have all the pictures and information they need to confirm that my lung is indeed healthy on the inside, just evidence of old blood in the bottom right lobe where I was likely punctured with the needle. The lady doctor confirms this from behind me that it’s all good….then I’m whisked away and back to my room in a woozy haze before I know it!

I had another visit from one of the entourage later that day and I pleaded to have the drain removed. Nothing had come out of my lung for ages now and I was losing my patience with it. I had more test results, confirming no cancerous cells as part of the fluid they released….everything was going brilliantly and I wanted to get the hell outta here ASAP now! The nurse came to take the drain out, which was really no drama at all. I thought it would be another unpleasant experience but really I hardly felt a thing as she whipped the pipe out and sealed the hole with steri-strips. I’ll be honest, pulling all the plaster holding it in place off my back was actually more painful than the drain coming out!! The bliss of being able to move freely and lie comfortably was incredible. Like I keep on saying, you learn to appreciate the small things….and let’s not forget that I haven’t been able to lie comfortably now for weeks, since the op. So all of a sudden being able to lie painlessly was just heavenly! I remember just lying there looking out of the window and appreciating that moment of painlessness, just then. A skill I would love to have the patience to carry forward into my life looking forward, just appreciating ‘the now’.

One more night of monitoring…..and I was good to go. On my last morning in there, I had a visit from a member of the endocrinology team. A very spritely and jolly chap; he gives James and I a complete thorough run-down of the genetic side of things, the part of the story that would hopefully conclude this sorry tale! Once again I feel like a medical celebrity-case as he joyfully tells us how unusual Pheos are, especially of this size. He popped in, in true Kiwi style, just because he had heard I was in the ward so he wanted to see how I was! He almost seems excited! Well, at least someone’s having a good time through all this! I would see this team of medical professionals next (add to my list of hospital departments: Hepato-Pancreato-Biliary (liver), Respiratory, now Endocrine) – my surgeon had already referred me to see an extremely experienced professor of Endocrinology regarding the genetic testing that I would need to wait on now.  These DNA tests should get me possible answers to my fears for the future: will it come back, is my family at risk, will I be able to have children?

I leave the hospital, this time I vow for the last time in 2014, squinting into the sunshine and chuckling at James who is grumbling at the car-park machine. Life will be back to normal now, I can feel it. All medical dramas are over. Yes, I’ve got a few tests to go through the paces of….but deep in my heart I have a strong feeling that it’s all just part of the procedure and it’s all over now. I’ve well and truly done my hospital dash. My next hospital visit will be for good reasons, with a bit of luck!

That night, in true James style and as if to remind me that life is vibrant and worth catching up with…..he nearly sets Onehunga on fire with a fantastic private firework display just for me. 🙂

Now a few weeks on, I sit here at the island bay in our new kitchen amongst building dust, surrounded by tape measures, upholstery swatches and tile samples. I have really struggled to find the time to finish this blog with house renovations and getting slowly back to part-time work, but being someone who never leaves anything unfinished it has been bothering me. Then it got me thinking about the whole point of me sharing my story. Firstly it was to educate others who might be in the early stages of a Pheo diagnosis and who might be as clueless as I was…..but ultimately it was for my own recovery. I had the choice to go for counselling, but I chose my own method. Off-loading my struggles onto paper has been my self-help, my therapy. However, now my priorities have changed. No longer do I spend my days agonizing over physical and mental pains, now I am filling my days with making our home fabulous. I am filling my days preparing for friends and family to come and visit over Christmas to enjoy our new home and enjoy NZ, the beautiful country we live in. I am filling my days with life! I no longer feel the inclination to pick up my blog, therefore it has served its purpose.

I think back to the day the surgeon said I may wish to seek out counselling. Well, that I did. You, my readers, are my counsellors. In taking the time to read my blog, it has made writing it worthwhile…..and as a result I have been inspired to continue and offload every last thing and have mentally pulled myself through the most challenging time of my life.

Thank you, from the bottom of my heart.

PS. Today I had my genetic test results: it seems mine was sporadic. All 3 DNA tests came back negative. Therefore, no implications/worries for my family. And, with a large dose of luck, I may have a family of my own one day with no risk of passing on anything nasty other than my annoyingly impatient gene!!

The alien was sporadic, who knows what kicked it off and kept it growing (I have a VERY strong theory it was stress-related – immune low, can’t fight bad cells….then again, I’m no doctor, just a hunch!).

Who cares….adios Alien. Now back to tiles…… 🙂

7. Deep Breaths

Being at home for the first few weeks after surgery was a roller-coaster. Emotions, pain, confusion, clarity, relief…..nothing felt normal. I only had a few things to achieve each day: get a couple of short walks done, do my breathing exercises, write some final year reports for school…..but the motivation was lacking due to the intense building pain I was experiencing. I just couldn’t understand why things weren’t getting easier. James was back at work and now it was up to me to motivate myself to get better, which usually would never be a problem, not being the type of person who needs anyone else for motivation. However hard I tried though, the pain just held me back….and my frustration was getting the better of me. I couldn’t sit, stand, lie or walk without excruciating pain. I went back to the surgeon and he prescribed me higher doses of morphine. He already knows me enough to know I’m not keen on popping pills, would much rather let my body do its own healing and keep dirty addictive drugs out of my system. He assured me that I wouldn’t become an addict and the only way to make progress is to manage the pain with pain relief in order to manage some daily activities and gradually become more mobile.

All I could focus on was getting my life back; it became an obsession. Getting back to work at school, recovering my normal routine, being independent and most importantly, being the girl that James fell in love with once again. That was all I wanted. I had become a shadow of my former self and it filled me with deep sadness and frustration.

Then comes the phone call from my principal, who by now has received my letter signing me off for 6-12 weeks. “I’ll be fine to come back by week 6” I say, desperately. Now at the end of week 4, it’s not looking likely and my principal knows this – she has eyes and ears in the right places to know exactly how badly my ‘recovery’ is going. My right lung and back aches, my shoulder cramps up, I can’t lie down, can’t breathe deeply and can’t walk very far without losing my breath. Teaching a class of 5 year-old girls is not on the agenda and I knew deep down it would be irresponsible. She tells me firmly that I must take the full time off, look after myself and not return till next term. She told me, quite rightly, that my surgeon would never have signed me off for so long if he didn’t seriously think it would be a slow recovery and there might be problems. And at my current rate, he seemed to be right.

So I come off the phone in tears, grateful for my employer’s support in wanting me to make a full recovery and not pressuring me to return to work too soon….but bitterly disappointed that my body has failed me yet again. All I want is to get up every day, pain free and get on with life. All I want is for this nightmare to be over. As if the surgery wasn’t bad enough, the aftermath seems to be dragging the chain too. I remember reading somewhere once that our careers are a major part of our identity. Without a job, people tend to feel worthless and lost….and I was certainly feeling like this. Usually I live a fast-paced, fulfilled life motivated by my desire to achieve my best in all that I do. Now, I feel like my energy and my zest for life has been zapped….all I want to do is stay in and be still, cherishing every pain-free moment that might pass by as a massive achievement. My sole intention each day had become a sad existence of pain-avoidance…..pop another morphine, heat up the wheat bag, pile up cushions to lean on and try to find a comfy position. It was like a hideous Groundhog Day. I am supposed to be in recovery from surgery.…so why am I not getting better?? James would get home from work each day, ever-hopeful that I might have made progress…..I know he didn’t mean it in this way, but I felt like he was disappointed in me for not recovering quick enough. I know this was just my paranoia. I felt exasperated….no light at the end of this pitch black tunnel.

I tried physio….but my physiotherapist seemed convinced that the issue was deeper down; she thought I may have developed post-surgical pneumonia. Yeah, right!

I tried acupuncture…..never thought I’d ever find myself volunteering to have pins stuck in me and cups sucking at my flesh, but I was willing to try anything….and actually it was strangely therapeutic and I wouldn’t write it off in future for issues of less severe pain.

When the pain got to such levels that I could hardly sleep because of the cramping pain in my ribs and chest, I got in contact again with my surgeon. Poor guy just can’t seem to shake me off! He says something isn’t right, I should be making progress by now. So he booked me in for another ultrasound to check my abdomen. He was initially concerned that the space left by the tumour may have filled with fluid which can cause intense pain.

So I lie once again in that little darkened room with that little triangular video screen that should only be used to look at babies, in my opinion….and memories come flooding back of that first ultrasound when the tumour was discovered. At least my faithful James was there at my side this time. Thankfully, no fluid was found in the space…..but rather a lot of fluid was discovered in my lung – a pleural effusion. I went back to see my surgeon the following day for some results and he sent me off for some blood tests to check I’m not fighting an infection. Basically, reading between the lines, fluid build-up in the lung can be common after big abdominal surgery, especially when mobility has been limited because of pain. However if the fluid becomes the cause of the pain, it’s a vicious cycle and it will just get worse. You can only expel the fluid through deep breathing and exercise, neither of which were possible with my current discomfort. More importantly, there’s a risk of infection the longer the fluid stays in there. So he sent me off once again to get some bloods taken to check my immune levels – an indicator of whether my body is fighting an infection.

2 days later, whilst shuffling slowly around a furniture shop with James, trying once again to be ‘normal’….we receive a call from my surgeon. It’s Saturday, so it can’t be good. My immune levels indicate I have an infection, most likely in this fluid in my lungs. So he has booked me in at Auckland City hospital to get it sorted. There’s me thinking we would go there for a few hours, but no – he tells me to pack a bag for a few days. Great….here we go again!

My first experience of Auckland City Hospital was the Acute General Admissions Ward – now I’m not being a snob but it’s not really the relative luxury of Mercy Hospital where I had stayed privately for my surgery. This ward is rammed – it’s like Limbo: a waiting room for patients whilst the doctors run tests and decide what specialist ward to send you to. I was in a room of 6 beds, in the corner, with nothing but curtains dividing you. At first you try to be polite and keep the curtain open, not to be rude and shut these strangers out that you are forced together with under such unfortunate circumstances. But in no time at all after hearing the life stories and woes of a few loud-mouths, you pull the curtain across, claiming your small space of visual privacy, if not sound. The nurse gives me a gown and tells me to put it on. Hmm, don’t think so! Not getting in that ‘I’m sick’ clothing till I really have to. Another line is jabbed in my arm, the vampires come to take blood…..and we wait. James gets bored pretty quickly so escapes for a couple of hours to do a few ‘urgent’ chores.

The waiting on that ward is pretty horrible. I ended up in there a full day and night whilst they did various tests on me. I was taken off for a CT scan first to check for clots and any nasties in my lung then I was told by one of the doctors on my surgeon’s team that they would be collecting me shortly for an ultrasound scan. They would use the imaging of the scan to mark a cross on my back where the fluid level is, then they would aspirate some fluid off my lung in that spot using a needle (thoracentesis). Sounded pretty simple! I waited and waited after the ultrasound had been done….but nobody came to take this sample of fluid. At about 10pm I asked for a sleeping tablet to help me sleep, assuming it would be too late to be doing it now so I might as well try and get some sleep on this noisy ward. Before I know it, there’s the doctor in my cubicle waking me up to take me for this fluid sample. I shuffle along bleary-eyed behind him in my slippers, still half-asleep, to a procedure room. He sits me on the bed and starts fussing around the room collecting the apparatus he needs. He leans me over a hospital table with some pillows, then he disappears out of the room whilst I try to keep my eyes open. It’s 11pm but it feels like 3am after the sleeping tablet I stupidly took. Stupid!! Suddenly he returns with another doctor in tow, who swoops in and in very rushed words he explains how he will give me local anaesthetic first so I shouldn’t feel a thing. All of a sudden, I feel nervous – feel what?? Is it going to hurt? I thought it’s just a needle? No sooner than my doubts had entered my head, he is jabbing the area on my back where the ultrasound lady had marked the x. Now, you’d think that local anaesthetic might need some minutes to take effect….but clearly not in the opinion of this whirlwind-of-a-doctor. Straight away, he jabs in a large needle and a sharp pain catches my breath. This really isn’t meant to hurt like this, surely? Involuntarily my lung starts convulsing into blood-filled coughs, that notorious metallic taste filling my mouth. The nurse suddenly appears with a sick bowl as I retch and cough mouthfuls of blood into it. What is happening to me? Am I dying?? I have NEVER coughed up blood in my life….and this was not just small amounts. “Oh dear”, says the doctor….”it seems we have a lot of blood that has stained your fluid too”….and with that, he squirts a bit across the white bed-clothes, as if to prove how red it was.

My head spins and I begin to black out, and as the nausea sweeps over me and the nurse plants an anti-sickness drug under my tongue….memories of my hideous week in hospital come rushing back. I stay there for a while, just leaning over that table, waiting for some peace to return to my soul, the nurse patiently sitting by my side. The doctors are long gone – like a whirlwind in and out. Once I’ve pulled myself together, the nurse leads me back to the ward…where a lady with a rumbling appendix has just been admitted into one of the beds in my room – she’s screaming out in a lot of pain….nobody is going to sleep tonight!

I lie in bed listening to that poor lady cry out…..then start thinking, WTF just happened to me??

The next day is Sunday – I wake up early, as you always do in hospital, with a nurse pulling more blood out of my arm and checking BP etc. I am promised a bed upstairs on the respiratory ward but I have to wait. James had been out with the rugby crew the night before so I expected no response till lunch time. So I settled in for a tedious morning of reading my kindle and inadvertently eaves-dropping everybody’s life story in the ward. Mid-day rolls around and still no word from James. So I send a tentative text. An hour goes by and still no response. His phone is off. Irrational, panicky thoughts creep in. I message a couple of people he may have been out with and nobody knows. One friend tells me not to worry, he’ll no doubt be asleep – but worry is something I’m afraid you just can’t help doing whilst in hospital. Everything seems ten times worse in there and worst of all you are incapable of going anywhere to solve these problems – imprisoned by your own poor health. After a while, tears rolling down my cheeks as I think of all the worst-case scenarios of what could have happened to James….he calls me, hung over, profusely apologising. He had slept in and the phone had run out of juice and wasn’t on charge.I didn’t care any more, the relief was unbelievable….I had totally over-reacted and it made me realise how badly I just wanted to be well and back to normal, living a healthy life with James away from all this drama. He was so sorry…..felt terrible for letting me down, but to be honest, it was about bloody time he misbehaved after the stress of the past few weeks! I just wanted to know he was safe.

Later on I had a visit from the doctors who had dealt with me the night before – they both apologised profusely for the way it was handled and how much of a shock it must have been for me. However, to be fair they had warned me that it is difficult to get the needle exactly in the space between the lung and the chest wall (the pleural space) to collect the fluid sample. By leaning me over that table, they had stretched out my back too far and thus over-shot the mark made by the ultrasound and as a result punctured my lung. Strangely, I was actually relieved to hear this. Better to be coughing up blood due to a punctured lung than for any other sinister reason. Having just had a large tumour removed that was growing into the main vein leading to the lung, there was always that worry in the back of my mind that it may have spread up to the lung in the blood stream. Distressing as it is, give me a punctured lung any day!!

Another doctor comes to see me to tell me that they have decided that I will need a drain to be inserted into my pleural space to drain off the fluid. More drama! She goes through in detail how the procedure is done, sensing my anxiety after the previous night’s experience. Unfortunately, the same procedure of using ultrasound marking then a needle is needed to get into the space where the fluid is for the drain pipe to be inserted. She assures me that this time, she will sit in on the ultrasound to see exactly how I am sitting so that she can re-create it and make sure the needle is inserted accurately, unlike the previous night. She filled me with absolute faith in her ability as she calmly talked it through. And best of all, she said it would all take place in my own private room on the respiratory ward later today, I would be sedated with plenty of pain relief….and James would be able to be there for the procedure.

More tedious waiting, a visit with coffee and muffins from my dear friend Sallyanne….then finally they came to collect me to take me up to the respiratory ward. I won’t say I wasn’t crapping myself about the procedure…..crazy really that I would be that nervous about having a little pipe put in my lung after everything I had been through at Mercy hospital. Unfortunately though, a bad experience stays with you…..and I didn’t enjoy coughing up clods of blood. Clearly the blood thing was bothering the doctors too….a few came to visit me asking questions: “have you ever coughed up blood before?”…”no!”…..”what colour was the blood”……”errr, red?!”……”yes but what type of red? Dark or bright?”……”oh, I see. A bit of both. Bright red with dark red cloddy lumps”. “Hmmmm…..so you’ve never coughed up blood before?”……”(sigh) No!!!”.

Before we left, as if to remind us how lucky I would be to get out of this place….a cross-curtain fight nearly broke out between three very grumpy old men. Admittedly, the guy who sat on his mobile phone all day with a really loud voice telling everyone and their Aunty about his infected foot, yes he was pretty annoying. But the foul language and venom that came out of the cubicle opposite telling him to basically shut the F up….was pure comedy. Then the old guy in the corner pipes up to join in! If it wasn’t for their respective illnesses keeping them in their beds, there would have been fists involved, for sure. James and I are literally squeaking with laughter trying not to be heard through those thin curtains…..they might have been old but MAN they had fire in them! I certainly didn’t want to cross them!

Bye bye Acute Admissions Ward. Even with the grim prospect of my lung drain looming…..I was still delighted to get out of there!

6. Meta-blogging: Self-helped therapy

I was pushed out on a wheelchair; the walk from the ward to the car was just a bit too far. As the doors to the hospital swung open and I was gladly ejected, the fresh Spring air breezed over me refreshingly, as if blowing away all the dust that had settled on me during that previous week. I left that hospital behind me like I used to leave the final exam halls as a teenager: pleased it’s over and glad to get the hell out.

James drove the car very slowly and carefully, negotiating speed-bumps ever so gently so that I was as comfortable as possible. Still, every movement took my breath away. Quite frankly, I felt like I had been hit by a freight train. Getting home after a week like that is always going to be strange, if not a little overwhelming. I remember sitting there on the sofa and just ‘being’. It’s quite strange, in my recoveries from numerous foot operations, I have always reached straight for the DVD box-sets once I get home, but this time I had absolutely no inclination of that kind. In the midst of my screaming painful body, I was contented to be just in the solace of my own company….be it writing school reports, doing some school planning, reading a book or a magazine. After the chaos of the previous week I just wanted to be still and quiet. I didn’t feel the need to just pass time mindlessly watching TV, in fact I found it mildly irritating. It’s like my mind could not rest in the passive abandon of external entertainment. Something inside me wanted out.

So I started writing this blog.

I remember my surgeon telling me the evening he delivered the pathology results that I may wish to seek counselling. He suggested the Cancer Society. He told me that I would be signed off for work for at least 6-12 weeks (WHAT??? Not likely!!) mainly due to the possible psychological effects of what I have been through. He told me that the physical side of things would take 4-6 weeks to settle down (and he was bang-on the money with that estimate) but it may take me a lot longer to deal with things mentally.

It’s not until you get home that everything begins to sink in. You guiltily pick up Google and test a few searches: “psychological effects of tumours….”, “recovery after primary cancer surgery….”, “pheochromocytoma recovery….”, “recurrence of pheos…”(no, stop it!), “cancer.org.nz…”(I said stop it!!!), “counselling services Auckland…” (perhaps, not yet), “tumour surgery recovery….”, “self-help primary cancer…”. I find myself in a whirlwind of information, various possible routes to take, not sure what applies to me and not sure whether to give it time and just see how I go. After all, perhaps I wouldn’t be so afraid of my thoughts if my surgeon hadn’t said it was probably going to be an emotional roller-coaster ahead?

Without a doubt, it was when I started searching along the path of fellow pheo patients that I realised how little there was out there for advice – “patient stories of pheo recovery/pheo patient experiences…” and similar searches would only bring up as few unhelpful wittering patient forums, sharing symptoms pre-surgery rather than anything related to the recovery process. Perhaps I should have been looking for liver transplant surgery recovery, since that was ultimately the kind of surgery I had just had. But a big part of me knew that it wasn’t just the surgery as such that was clouding my mind, it was the nature of the beast the surgery was fixing.

Nobody, it seems, feels willing to share their experience in any detail. The few blogs I did find for pheos were largely bible-thumping Americans who wanted nothing other than thank the Lord for their spared life after surgery. Don’t get me wrong, I can understand that, I have questioned my spirituality (or shameful lack of it!!) many times since all of this has happened. Perhaps I do need to connect with faith and just be thankful? However, something was nagging at me. The one thing I lacked prior to my surgery and still lacked moving forward was knowledge. Pheochromocytoma is a rare type of tumour so I guess the numbers of patients are limited. Go search any other type of tumour and you’ll come across plenty, too many stories, blogs and forums. But it still seemed extraordinary to me that there are so few patient stories for pheos.

So I made a decision. I would write a blog….the kind of blog I wished I had found along my journey. A bare-all blog. A chance to get out all of this heaviness I felt in my heart and get the confusion straightened out in my head. I have blogged before, whilst travelling, and I found it therapeutic and levelling during a time in my life when everything was uncertain. This time I really do need the therapy that putting pen to paper and pouring out your soul offers. And I could hold-fire on counselling and other routes towards more stable mental health if I managed a self-help option of my own.

I decided already that I wouldn’t be holding anything back, smoothing over any rough edges or exaggerating any part of it. This would be my story, my retrospective diary of by far the toughest challenge I have ever had to face. At many points during this process, my gradually healing mind has questioned whether I’m revealing too much. There are so many private things that I could (some may say should) have kept to myself. But after my fruitless search for an honest account that would help or guide me, I felt I owed my absolute honesty to that one person who may pick this up one day during their fervent desperate google searches, having just been diagnosed with pheochromocytoma…or another cancer requiring major surgery. And in doing so, I get to let go of every hidden-away feeling and anxiety that lurks in the back of my mind. In my opinion, it’s ok to be honest with the world. It’s ok to share thoughts and feelings that other people may frown upon. It’s the motivation for doing it that really counts. I’m very lucky that I was brought up in this way – being open-hearted and honest are qualities I can thank my lovely Mum for. She so desperately wanted to be with me through this time, as did my sisters. However, I made this choice to live so far from home and it certainly feels like a sacrifice at times like this. In sharing this blog, my Mum has thanked me for letting her feel like she was here, seeing it all through my eyes. So this blog has many personal benefits. It has also helped her understand it all where distance really doesn’t allow such understanding, despite the wonderful world of technology we live in.

Talking of technology, I have been overwhelmed by how kind everyone has been from the first post I made on facebook, ten days after my initial scan. Once I was sure what I was dealing with, I put a typically honest post up about my tumour and upcoming surgery. From the moment that went up, I have been inundated with messages of support, messages sharing people’s own or loved ones’ experiences…..stories of hope and encouragement that boosted me along. James even arranged for my friends all over the world to post videos wishing me luck throughout the weekend leading up to my surgery. Seeing the faces and hearing the voices of my family and friends, old and new, near and far, was so powerful. I was watching them, with a smile on my face, right up to the point I left my room for theatre….for that I am grateful to you all from the bottom of my heart. I have often wondered what it would have been like going through this type of thing so far from home 20 years ago, before the world of emails, instant messaging and Skype/FaceTime. I would have felt more isolated than I could ever imagine. I probably would have gone home. But thanks to technology of today, I have felt loved and supported from my wonderful friends and family in all corners of the globe. We are all able to live lives many miles across vast oceans from home, and at the touch of a button our loved ones back home are there smiling on a screen in front of us. However, no virtual hug can ever compare to having people right there by your side. I still felt homesick.

Then I start thinking about 100 years ago…..it doesn’t bear thinking about the suffering people must have gone through in these situations. Today’s advances in medicine and technology really should not ever be taken for granted.

There’s a saying: a problem shared is a problem halved. Not all of us find this easy, but I am certainly a heart-on-my-sleeve type…..so with every tapped out word on my iPad here on this blog, I shake away a little bit more of that dust that had settled deep within my soul during these past few months.

I didn’t think there would be many chapters to this blog as I started writing. The hard stuff was all over surely now I’m out of hospital…..not a great deal to write about? However my road to recovery was not going to be that easy. Days go by where my energy and strength would fluctuate up and down for no apparent reason. My pain levels were extreme, I just couldn’t get comfortable whichever way I sat or stood. Lying down flat was not an option, so I pile up the pillows and sit up in bed and steal some fitful hours of sleep. You reluctantly pop more morphine (choose from your 3 options of laxatives as a chaser), heat up the wheat bag for the 20th time in the day and wish you had more of them to jig-saw on various aching parts of your tummy, shoulders and back.

James continued to encourage me to get out for walks and carry on with my breathing exercises when my body was on fire with pain. He supported me patiently through it but both of us felt confused and at a dead-end. Perhaps this is just how it is? Perhaps my pain threshold is very low? Again I consult Dr Google, punching out my symptoms angrily wondering why this nightmare won’t end.

So this isn’t my final chapter as it could have been…..and my self-help therapy continues.

5. Every cloud has a silver lining

I arrived down on the ward to welcome peace and solitude. I had a nurse tending to me 24-7 but on a much less hectic level. I left a few of my pipes up in ICU too so I felt a little less like a Christmas tree.

Finally, I am also allowed visitors other than Dad and James, not that they weren’t enough, but the friendly faces I would see in the following week would really help me along on my way towards positive thinking…..and give Dad a chance to duck out of the room to have his own time-out having sat tirelessly at my bedside throughout my stay in hospital.  I must say, a few weeks on now, I am blown away by the kindness of Kiwis. I have had endless visits, meals made, pick-ups for walks, flowers, coffees, sweet delights and well-wishes. I was heavily on drugs so I had to write down who had been to see me, otherwise I would surely forget….but each and every visitor was appreciated, helped pass the time, made me smile, tried not to make me laugh – the agony- thank goodness for my coughing pillow….!

Ah yes, coughing pillows…..

The nurse had given me a lecture about this the night before my surgery, which had gone completely over my head as I was far to preoccupied with my nerves to listen. After abdominal surgery, coughing pillows become your best friend. For my surgery, a giant L shape was cut down from my sternum to just above my belly-button and across to my flank. In this process, of course, huge amounts of abdominal muscles are sliced through, leaving them rather broken and painful afterwards. It’s amazing how much you discover your ‘core’ muscles are responsible for…..pretty much everything! Every movement you make involves some part of the core, therefore mobility is nigh on impossible without pain.

Breathing, lying, turning, sitting up, standing straight, walking, talking, laughing, coughing……all agony!

Seriously, no lesson is required by a nurse….you grab that pillow and clutch it tight to your tummy, like a child clutches his teddy bear, thankful for the comfort and fearful of losing him. When it drops from the bed or you lose sight of it momentarily, panic sets in. It’s just a pillow…..but sometimes the simple things are the most effective.

I remember my first shower, after 2 days in ICU where showering is not high on the list of priorities, you feel pretty grim. It’s a fine line between how grim and dirty you feel, and how much pain you can face to endure the shower. You know it’s coming….but you’re in denial. In she comes, bright and breezy “Let’s get you in that shower for a nice scrub….it will make you feel a million dollars!”. Yeah right.

Dad gets kicked out and after a quick press of my pain pump, I’m hauled up from my bed by two nurses, reluctantly and painfully. One nurse goes in with me, disconnecting lines and carrying my bag of pee as she wheels me in on a chair… can hardly keep my head up and nausea has already started to creep in. Again I start to feel resentful that my condition is so much worse than I was prepared for. Resentful to whom? I have no idea……I’m just feeling pretty damned sorry for myself by now.

Hospital gown whipped off, suddenly I’m aware I’m naked and there’s a big mirror in front of me. I slowly lift my head as the nurse splashes and soaps me gently all over my body. All I can see is this frail person, who I’m sure isn’t me. She has a very pale face with big black bags under tired puffy red eyes and she’s slumped like an old lady in the chair. She’s got lines coming out of her neck and her arms. Her belly is swollen and there’s a huge blood-stained dressing across her tummy. She looks so sad.

Suddenly I’m next door in my room again and there’s general panic around me…. a nurse is pumping my arm full of something from a syringe, my Dad is there holding my hand and I’m pushing him away. Pushing my Dad away, what has possessed me? I can’t think straight, the nausea is consuming me. I hear an Irish lady’s voice saying she knew getting me up was a bad idea. Just let me lie down, is all I can think. There’s a conversation about how they need to try to get me to sit in the chair…..I’m too sick. Just let me get into bed again! This is pretty much how it goes for my first few mornings on the ward, and I would pay for it later in my lungs. The problem is, after major abdominal surgery, your lung often collapses and the only way to re-inflate it is to move and breathe deeper! I was given a little breathing gadget too to inflate my lungs, 3 balls that you would have to try to pull up with your breath and hold for 3 seconds, sounds easy….no. Physios came and went, tried to get me on my feet for a walk and soon enough my head would spin, blood pressure plummet and nausea would creep in.  I would only manage any sort of mobility in the afternoon, usually with the help of my Dad or James doing his evening Breathing Boot Camp sessions – he would walk backwards ahead of me as I shuffle with my zimmerframe and later without, telling me to breathe in, breathe out, chest up, look at me! I’ll tell you something, that is one good man I found there….I didn’t think it was possible to be loved so unconditionally. All he cared about was me getting better……. during my dark insecure moments in the last few weeks where I would worry he must be fed up with me by now, he would reassure me: ‘nothing matters to me apart from you and you getting better….everything else is just noise!’. It takes a very special kind of person to support someone so selflessly through chronic illness. I’m so lucky I have someone that special.

Someone that special, can also be that naughty! James would arrive early in the morning, chat up the young trainee nurses to go get him toast, even eggs! He would then arrive on the evening, take over from my weary Dad after a day ‘on watch’ and he would chat up the nurses again to get him wine! He even managed to get a red wine delivered to him whilst I was in ICU….then the charge nurse arrived the next morning and saw the empty glass next to my bed, well you can imagine the reaction!! In my drugged state, I couldn’t even think of a good story as to why it was there, shame really!

James also developed a ‘special’ relationship with my lovely Irish nurse, who’s jolly nature kept me going for the week. The first morning she met him, half way through munching on toast he shouldn’t even have, he introduces himself as Horrace. Poor woman, believed him when he refused to back down. I’m lying there cringing and clutching my pillow as the giggles escape and my tummy muscles burn with pain. He knows exactlly how to make me laugh, and never tried to avoid it. Despite it being a very rough week, I remember so many funny times with James. They do say laughter is the best form of medicine! You go through a roller coaster of emotions, and sometimes you don’t know whether to laugh or cry…..James and I certainly went through both of these emotions together. Squeezing onto the bed beside me to cuddle me before he left in the evening, it shocked me to see the tears well up in his eyes and roll down onto the pillow. It was as tough for him as it was for me. It certainly was a week that inevitably brought us infinitely closer……but a week I hope we never have to repeat.

Every day my surgeon and my anaesthetist would visit me morning and evening without fail. They would check how I’m feeling, check pain relief, check bowel movements. The problem with heavy painkillers, particularly opiates such as morphine, is they slow down your bowels. Even though you don’t feel hungry and you’re only managing small bits of food…..after a week of no movement, you begin to get panicky. Laxatives at-the-ready…..and everyone cheers when you have your first poo! It’s quite amusing, nurses and doctors ask those questions: “passing wind?”…..”any bowel movements?”. At first it’s a bit embarrassing, but soon enough you’re happily telling the nurse or anaesthetist the detail of these things, often in front of an awkwardly listening visitor who really doesn’t want to hear about it. You get quite blasé about sharing graphic information…..you’re lying there with your bag of pee with your catheter pipe in full view for goodness sakes, pipes and lines coming out of your body from every angle, nurses popping in and out to take blood in front of people, you forget eventually what is acceptable for public viewing and hearing, and you don’t really care any more!

Thursday evening my surgeon came as usual to visit but this time we knew it was with the pathology results of my tumour. After being resected, it had been sent away for testing and my surgeon had hurried the process, knowing my Dad would be leaving after the weekend to go back to Spain. We were all naturally anxious to hear the news and the atmosphere was pretty tense. Even he looked pretty emotional as he relayed the news….made me realise how dedicated these people are to the well-being of their patients. He told us that the whole tumour was encased in a sort of membrane, which he carefully cut around leaving the whole thing intact. There were no signs of damage to the exterior of the tumour, leaving almost zero possibility that any was left behind. Even the part they were most concerned about, where it was growing into the vena cava, he managed to cut cleanly around it, with no chance of any cells being knocked off or left behind.  Quite an incredible bit of surgery and we were all obviously delighted by the news. He said the next step would be to see the Endocrinologist who would take care of my ongoing follow-up, to investigate why it was there in the first place, carry out genetic tests and ensure regular screening against any recurrence. That c-word lurking again in my mind, I had to ask the question that had been haunting me….did I/do I have cancer? You could see how difficult it was for him to answer this question….but ultimately he said I had a primary cancer and he was absolutely certain he removed all of it before it had the chance to spread any further than my vena cava. Therefore cancer gone. Despite being such a traumatic experience, I think we all realised right then just how incredibly lucky I am. Every cloud has a silver lining.

That night Dad and James stayed for dinner with me as a little celebration.

The week went by like that, and I can honestly say I would not have gotten through it without the support of my surgeon, anaesthetist, the nurses, my friends who visited, the gifts and flowers that were sent (James said it was embarrassing to see my window from outside – mine was simply overrun by the colour of all the beautiful flowers sent to me).

But that week, I must say, that week was a week I can never thank my amazing father enough for. He really has the patience of a saint. He sat and witnessed things that a father should never have to witness, he sat patiently as I slept, reading his iPad quietly to himself.

 

The day he had to leave was a truly awful day. We had all hoped that I would be able to go home before he flew away but I just wasn’t quite well enough. So he came that morning, as usual….but then had to say goodbye a couple of hours later. I cannot express how much my heart broke…..and I could see his was breaking too. After a teary cuddle, he finally left me there sobbing, the kind of tears that choke you……to get on a plane to go all the way back to the other side of the world. Again, guilt consumed me – why could I not be stronger? How could I let my Dad leave seeing me so upset?

If you’re somebody who has chosen to live so far from home and family, you’ll appreciate the pain we both felt. At times like this, you need your family. I was so lucky my Dad was able to travel so far to be with me. Again, every cloud….

The next day I pleaded to go home. I had had enough, and it wasn’t the same without Dad there. I just couldn’t look at the corner of the room where he had been sitting all week without feeling upset. James had taken that next week off work to be with me, central line was out, the epidural and catheter had been out for a couple of days, I was a bit more mobile and all my lines had slowly been taken out over the week one by one.

I was almost human again and it was time to go home.

4. ICU

At a number of points during that following week I remember thinking why the hell did nobody warn me of this? It seemed almost cruel to me that they would send me into this week of hell without any warning. Perhaps, ignorance is bliss. Those weeks leading up to surgery were bad enough without having to prepare myself for what was to come after.

My first memories post-op were the voices of James, my Dad and the surgeon chatting to each other…..no idea what about, I just knew they were there and they sounded happy. I was seriously groggy…..could hardly keep my eyes open, just drifted in and out of consciousness peacefully. Nurses kept on trying to wake me…..get me to talk, but I was having none of it! Sleep is far too lovely thank you very much! It’s very strange reflecting on this now actually…..I am searching my memories to remember. So James filled in the gaps for me.

Dad and James went their separate ways after I went through to theatre – Dad went down to the cafe with his iPad to pass the time, James went to the gym. Both had been given a ball-park of up to 5 hours for the surgery and they would receive a call when it was complete. When James finished his gym session, he found a missed call on his phone from my surgeon’s mobile. Way before the surgery was due to finish, he naturally started to panic and called right back. The anaesthetist answered cheerfully and said it’s all done – successful op, she’s doing really well – just being stitched up and you’ll be able to see her in recovery in 90mins. Delighted with the news, he called Dad and they both met again at the hospital to wait for me to come through. I had been booked in for 2 nights in Intensive Care for close monitoring so they waited there. They waited, and waited. Repeatedly asking the ICU staff where I was……they kept on saying the same: ‘she’ll be through soon’. Stress levels started to rise, having been told I would be through a long time ago now….and I think a few frank words were exchanged between my bodyguards and the ICU staff whilst I was in the land of not-wanting-to-wake-up. I remember the nurses trying to wake me….and I just couldn’t shake myself awake. If I had any idea how worried Dad and James were, I would have given myself a good slap. The drugs they had given me had clearly knocked me out!

I have a vague memory of the surgeon showing my Dad a picture of the tumour on his mobile phone, my poor Dad. I really don’t remember much of that first day…..I think they brought me an omelette to try eat, which I tried with Dad’s help. Feeling like a child again, my Dad carefully cuts up my food and helps me reluctantly take a bite or two.

Then it’s night time…..Dad and James have gone home…..I’m behind curtains with orangey-yellow lights and shadows of nurses moving around helping out the 6 patients in ICU that night – a full house and very noisy. All of a sudden I’m aware I can’t move. Can’t sit up, can’t even turn. I feel paralysed, trapped. I look around and there seem to be a hundred different lines coming out of me going into beeping machines. I have 3 or 4 IV lines in my hands and lower arms, a central line in my neck with quite a few lines coming out, an epidural in my spine, oxygen nubbins in my nose and a catheter.

Fear washes over me as I realise how serious my condition is. Not 10 minutes goes by without a nurse coming in to check on you, writing observations down in a thick file of notes at the foot of my bed. I can’t say much – I’m almost incapable of talking. My mind is blank, in shock, struggling to understand why so much fuss is required. I must be drifting in and out of consciousness, because all of a sudden there are 3 nurses next to me man-handling a machine that seems to be misbehaving – my epidural or my pain pump has run out, and clearly the machines are not easy to refill and reset. This happens repeatedly throughout my stay in hospital….various nurses cursing at these new machines that they all seem to hate.

I wake up the next morning for what feels like the 40th time and it seems to be getting light outside…..and all of a sudden I am in a lot of pain. I have a pain pump, a button which releases fast-acting IV pain relief, that perhaps I have not been pressing enough. All I remember is intense burning pain down my right side. They try to roll me on my side to check my epidural line and I almost scream in agony. The reality of my situation dumps itself on me like a lead weight and I feel trapped and panicked. I had no idea it was going to be as hellish as this and I feel angry that I’m mentally so unprepared. In the delirium of my pain, they give me a bolus on my epidural and increased the constant levels. Suddenly I feel like someone is standing on my chest and I can’t breathe…..start to panic and hyper-ventilate. Nobody told me that this bolus would creep up my chest and, in-effect, paralyse the bottom of my lungs. A nurse is there, James is there…..I feel like I might suffocate. I have never felt more close to death. Eventually I calm down and the numbing effect of the epidural blocks my pain.

During the day, my Dad sits patiently by my side as I drift in and out of consciousness. This is what he would do for the entire week – so that James could continue to work this week. Dad was on daytime duty and James was on early morning and evening duty. They were both amazing. On this second day in ICU most people who had been with me in there the night before were moved on down to the ward, so they moved me out of the corner and across to the other side of the room and faced me with a gorgeous wrap-around view of Mount Eden. I remember watching the little figures of people standing at the top taking photographs of the beautiful panorama and wishing I was there, not here. One day soon I will go up that Mount and be one of those little people and I’ll look back at that window and realise how far I’ve come.

Some time later on that day, I had my first complete meltdown. My pain levels increased again and the nurse told me off for not staying on top of it by pressing the pump enough. Apparently you need to press the pump in advance of pain, keep on top of it. Well I’m sorry, but firstly I’ve never used a pain pump before, secondly I’ve never had surgery on my abdomen….and quite frankly, I’ve never experienced such pain in my life and my pre-planning rational mindset is not quite in gear. So forgive me for being on a learning curve! I remember crying, no actually sobbing….hyperventilating again, totally flipping out. No father should have to watch his daughter go through such a thing….I could feel his heart breaking as he watched me go through hell and back and I felt so guilty I couldn’t be braver for him. The nurses fluster around me trying to make me more comfortable. Dad holds my hand as I try to calm down. All I want to do is escape my body that seems to have broken down to a point I never thought possible….I just want peace, no pain. I feel desperate. Eventually I calm down and I find myself staring at that beautiful view and the miniature people again. My Dad continues to hold my hand, sits patiently watching me. He really is an amazing man.

The next morning is a repeat of the first….I wake up in ridiculous amounts of pain, clearly not been on top of it again. The anaesthetist visits me, as he does every day, and looks though my file and what levels of the drugs I’ve been on. He suggests a new drug to add to my cocktail that might help – clonidine. I nod, trusting him and desperate to try anything that might help….so long as it doesn’t give the same suffocating effects of the bolus on my epidural the day before. So clonidine is added to one of my IV lines, and within minutes I’m out-of-it. James arrives and, not that I remember, he told me I couldn’t even string a few words together. I was totally doped. He came all that way to find me incapable of communicating in any way. It must have been a shock for him to see me like that…..and afterwards I feel guilty that I’m not braver and able to handle the pain. I think I came around in a few hours…..my Dad was there again sitting by my side and I had no recollection of anything past my anaesthetist talking to me at 6am.

After 2 nights in ICU, I hoped to be able to go down to the ward. My noradrenaline levels had been reduced right down, to counteract the effects of the drugs I had taken prior to surgery. My other observations and tests seemed to be going well. But the biggest test for being able to go back to my room on the ward is getting on my feet. Sounds easy…..really, no. The Physio arrives and helps me sit up on the edge of the bed. I have never felt so heavy in my life. My legs seem to hang, incapably down from the bed and I can hardly keep my head up. My right leg is numb from the epidural spreading. Instantly, nausea sweeps over me. The nurse takes one arm and the Physio takes the other and they lift me to my feet. My tummy pulls – won’t allow me to stand up straight, and I’m forced into a hunched position. I remember having to tell my own feet to take a step. Shuffling like an old lady with lines dragging behind me, they walk me in a very small circle in the curtained-off area round my bed. The whole time my body is screaming out ‘get me back to bed, I just want to lie down’. Getting mobile after a surgery like this is one of the hardest things to achieve….and this was just the beginning.

The Physio, not convinced by my first attempt, returns in a couple of hours and we repeat the process again, this time with my Dad helping by holding me up on one side. I remember thinking again how sad it is that he should be having to do any of this. Pleased that I managed it twice, I got the clearance to go down to the ward. Dad and I waited for the nurse to come and he pushed the bed with her down to my room.

No more bright lights in the night time, patients calling out, noisy machines, alarms, constant checks. The staff in there were just incredible and I am humbled by the job they do – it can’t be easy taking care of such acutely sick people and dealing with their stressed loved-ones…..and they work ridiculous hours. It takes a very special kind of person to do that job and I am full of admiration and gratitude.

Two nights in ICU had felt like 2 months and I have to say I was glad to leave. Now I had the peace of my own little room, a place where I would overcome a lot of battles in the week ahead.

3. Alien Resection

The following Monday I met with my anaesthetist. You would imagine it would be the usual height, weight and standard questionnaire but instead, it was another lesson on the functionality of my tumour and how we need to prepare for surgery. With 10x too much adrenaline being released from this Pheo, there are certain precautions that must be taken. Mainly, for me to take alpha blockers for the week prior to the op to adequately ‘block’ the effects of excess adrenaline secretion and therefore avoid dangerous swings In blood pressure during surgery. This relaxes the constricted blood vessels but speeds the heart rate, so in turn a few days before surgery beta blockers are then introduced to fix that problem. He tells me that during the op he will have a number of upper and downer lines going into me that he will have to adjust constantly in order to keep my blood pressure at a steady rate, even whilst the Pheo is being manipulated and squeezed. I’m not a classic case for a Pheo though, being mainly asymptomatic these days with uncharacteristic low blood pressure. He tells me it will take a while to know what is ‘normal’ for me, so he can identify if I’m misbehaving….therefore he will need to see me a few times prior to the op to take blood pressure readings etc. I listen attentively, the shock of the past few weeks fading as my former assertive self steps back in. I’m so intent on getting this alien out now, and I’m fascinated by the balancing act this man will have to perform in order to keep me safe. I imagine him almost needing to ‘play’ me, like an instrument. I feel very lucky to have such competent professionals dealing with me.

So off I go, tablets in hand. Because of my low blood pressure, he warns me that it’s not going to be a fun week: the meds will make me feel weak, dizzy and possibly quite unwell. But there’s no way around it – no blocking, no op. No blocking, no alien resection. Not entirely true, I would have to wait another week…..but I’m just about sick of waiting and want this thing gone ASAP. Waiting is not an option.

Back to another challenging week at work, punctuated with appointments for more blood tests and scans. Another hideous breath-holding MRI to check my whole body for any spread of tumours. A chest CT to look closely at my lungs – where the tumour is growing into the blood flow of my vena cava, the surgeon is concerned there might be some spread into my lungs. An echocardiogram to check my heart functionality with all this adrenaline pumping around my body.

Thursday comes around and my lovely Dad arrives…..flown in all the way from Spain to be with me. It was supposed to be a surprise but James ended up telling me as a boost when I was feeling low the week before. Just knowing he would be here made such a difference on my mindset. The spokesman for my family and my connection to home at a time when you feel so far from home. My second rock, along with James. I get home from work that Thursday and there he is nodding off on the couch, tired from his long journey. He wraps his familiar arms around me into a hug I will remember forever….like he might be able to hug away all my fears.

By the time Friday came around, the meds were making me feel more than a little ropey, so I took the day off work, resigned to the fact that this would be it now until I’m fully better.

Admission into hospital was Sunday, so me and my two bodyguards trooped off to the hospital in the late afternoon. Sitting in the back seat looking out of the window, my Dad and James chatting in the front, I looked up at the Spring blossoms and new leaves growing on the trees. They looked beautiful.

The nurse takes my height and weight and shows us to my room. Then she gets her BP machine out and looks alarmed when she sees how low my BP is. My Dad, now an expert on this, almost cheers as he sees it – he knows, of course, that the lower it is, the better. My anaesthetist arrives and repeats the process and instead of looking alarmed, he gives me the nod – I’m blocked and safe to proceed – alien resection is go.

After a quick bite to eat out with Dad and James (feeling like an escaped patient with my hospital tag on my wrist)….they go home and I get ready for bed on my own in that little room. Suddenly I feel lonely and afraid….and a little bit lost. I remember sitting on that bed and wondering how the hell I had got here. The stress of the last few weeks hit me and I feel overwhelmed. Is this really me? Is this really happening? That familiar feeling of being on the outside looking in creeps in. I wouldn’t have been surprised at any point in this whole sorry tale to wake up with a start in bed at home and realise it was all just a bad dream. Then the nurse bustles in, breaking my mourning feel-sorry-for-me moment…..and tells me all about coughing pillows. I really don’t know what she’s going on about and can’t focus enough to listen. Probably a good thing, because I’d learn all about them and the hideous pain related to them soon enough. She gives me a sleeping pill and I drift off into a troubled sleep.

The next morning the nurse wakes me. I shower with a special disinfectant scrub and get into a hospital gown. All of a sudden time speeds up and everything’s a-fluster. It’s all machines, checks, anaesthetist and surgeon visits….’ready?’…..as I’ll ever be. Then it’s a sombre silence – just me and Dad and James in that little room waiting for what seems like an eternity whilst they prep the theatre.

Soon enough, another nurse comes in…..I haven’t met her before, dressed in theatre scrubs and telling me in a reassuring tone that she will be the main assisting nurse during the procedure. At this point I thought I would have to say goodbye to my Dad and James……tears already starting to warm my eyes. But then she tells us they can come all the way up to theatre to say bye. Amazing! I love kiwis. This would never happen in the UK.

Wheeling me up on my bed, I look fondly at my Dad and James walking behind me…..my two bodyguards. These two amazing men would help me get through this nightmare that’s about to begin. I start to feel emotion kick in…..and a whole heap of anxiety. Double doors flip open and there’s my anaesthetist, who I feel like I know pretty well now. I hate to admit it…..but when I kiss James and Dad goodbye and the involuntary globby tears start to roll out (I had held it together pretty well to this point), I actually wonder if this is it. This might very well be my last moment of consciousness. I have never had such a heavy heart. Staring my mortality in the face, I have a feeling inside me that words just can’t possibly describe.

My anaesthetist gently takes my hand and tells me I’ll feel a scratch…..then I’ll begin to feel a little sleepy. That’s the last thing I remember.

2. The C-word

Pheochromocytoma……….what the hell is that??  

The surgeon gave us a brief overview as James and I sat there trying to take it all in. Basically, a Pheo is a rare type of tumour arising from the adrenal gland. So rare, in fact, it seems I am 1 in a million per year who get diagnosed with one of these in NZ. Yeah, I know it’s NZ, more sheep than people blah blah…but you think of that stat compared to other types of tumours that arise even amongst a small population…..you get my drift. That term ‘one in a million’ always seems to carry a positive spin, something related to luck. Quietly I think to myself, bloody great…..the one time I am one in a million it’s not related to anything lucky, no lottery win for me then! The consultant gives us the low-down of what the adrenal gland is for – basically, a tiny gland located just above both kidneys, it has a very important function as part of the endocrine system (which is the system involving all of the glands and the hormones they produce eg hypothalamus, pituitary, thyroid etc). The Adrenals produce hormones related to stress and blood pressure. When pheos grow in the adrenal, they over-produce these stress response hormones and common side effects resulting from this can be severe headaches, palpitations, sweating, high blood pressure. Instantly my mind races back to those headache attacks in 2012 when I was diagnosed with cluster headaches. I tell him immediately about this… there’s no proof but there’s a strong possibility they might be linked to this tumour. Perhaps this was when it started growing? Some people with pheos are asymptomatic though, I certainly am now and have been for two years so perhaps there is no link. But it’s strange, I felt a very small glimmer of something…..you might call it relief, weirdly enough, that there might finally be an explanation to that awful, inexplicable period of my life that sent me running away Down Under.

What next then? He says it will have to be removed. Resected. Can it be done via keyhole/laparoscope? No way. In fact, he won’t be able to perform this op, it’s out of his expertise. So in true Kiwi style he tells me about ‘a really good mate of mine who’s one of the best liver surgeons in the country’. Err….hang on. Who said ANYTHING about my liver? My liver is just fine, thank you! He wouldn’t elaborate any more, just told me that the liver surgeon would give me more detail about the procedure at the appointment he had arranged for me on Thursday.

It was at this point we had to say goodbye to this man who had looked after me so well to this stage. You do start to feel a little like you’re being pulled from pillar to post, sent to so many different people in search of an answer. You start to feel a little comfort when you see someone regularly, like they know your story…..an expert on your problem, therefore you’re safe. So more anxiety kicks in at the thought of meeting someone else who is apparently the true expert who will deal with this alien inside me.

More waiting. Monday to Thursday seems to take weeks to roll by…..time seems to be at a hideous, cruel standstill. I must say, those weeks before surgery were the longest weeks in my life. Made more bearable by going to work and seeing my smiling girls, and copious amounts of wine and cuddles from James in the evenings. I’m not normally an every-night drinker….always cherish my few cleansing booze-free nights during the week….but all of a sudden normal routines don’t seem so important, because ‘normal’ doesn’t seem to exist any more. You stand in front of the mirror whilst cleaning your teeth, doing those ‘normal’ things, and you can’t help staring at your tummy wondering how it’s possible that thing could be in there. You shower, squeeze your side under your rib cage trying to feel it…nothing there. You drive to work, blasting music to quiet your thoughts, tears rolling silently down your cheeks. You go to the gym, go to the pool, wonder if there’s any point. You spend time with friends, try your best to smile when you’re crying inside.

Thursday finally arrives and within 5 minutes of meeting this guy I was convinced. Straight to the point, a spade’s a spade….he gets out a large plain notepad and starts drawing these pictures of what he plans to do during surgery, talking constantly with such ease and confidence about something that looked pretty bloody complicated to me! Immediately I realise why a liver surgeon is needed. My Pheo is so big that it can’t be removed with a laparoscope…..so big he will need to completely remove my liver (effectively like liver transplant surgery) in order to even get access to the thing. He then starts to explain to me that the tumour has some sort of tongue shaped part that seems to be growing into my vena cava. The rest of the tumour does not appear to be invading any organs, thankfully, but this part he clearly has some concerns about. I quietly watch him draw my insides with this amazing upside-down skill and talk about the procedure like it’s as easy as baking a cake (not that I’d know, not much of a baker). I felt numb, like I’m on the outside looking in. Tears once again roll down my cheeks, but no real crying….more like tears of resignation. This is really happening. To me. In my moment of silence all I can feel is James’ reassuring hand on my knee and all I can see is the pen moving on the paper of my liver genius. I hear nothing.

Near the end of the consultation, he nonchalantly refers to my tumour as a ‘primary cancer‘. I beg your pardon?? These two little words seem to hang in mid air and everything else he says after this point I don’t hear….another bombshell dropped by a medical professional without even realising it. My mind goes into overdrive. Stupid, you might think…..but during this whole time I’ve not even dared to mention the C-word, like I might jinx myself. Of course it’s always there lurking in the back of your mind but you never dare say it. My world starts to close in….thinking the worst as usual, the flood gates open and panic starts to set in.

Finally, he hands me a hospital folder with documents to complete and tells me he will operate in 10 days. But during that time he wants a lot more tests and scans done and for me to meet with the anaesthetist he has lined up for the surgery for some pre-operative treatment. Apparently the anaesthetist has a very difficult job to do because of the nature of the tumour. My Pheo is like a sponge full of adrenaline….in fact it has been secreting 10x too much adrenaline than is normal. When they touch it during surgery, there’s a high risk of squeezing it and allowing dangerous levels of adrenaline to be released, sending my blood pressure to possibly lethal numbers if it’s not controlled. So it’s not just a regular anaesthetist who’s needed.

There was me thinking they would be able to simply go in and cut it out, alien gone, drama over. No such luck.

 

 

1. Pheochromocytoma – Diagnosis

Whenever I’ve gone through tough times in my life, I have always put pen to paper, or fingers to iPad. Often called ‘Wordy Westwood’ by friends, I find it a great form of release, therapy you might say….so it actually doesn’t matter if nobody reads it. But who knows, someone might just read my ramblings one day and feel some connection, either through a similar experience or state of mind. Maybe my words shared here might offer someone sometime some form of relief or support in a similar confusing situation. For now, this is purely my selfish need to vent what has been the most challenging experience of my life.

A little background….it’s relevant, honest!

January 2011 I had an unfortunate encounter with a lorry and came tumbling off my motorbike in the early hours of Monday morning London rush hour, broke my foot and fibula. Stressful few months rehab ensued.
October 2011 I had reconstructive foot surgery….more stressful rehab.
January 2012 just as I was getting ‘back on my feet’, I was faced with a 6 month battle of severe headaches and palpitations attacks….after tests, brain scans and consultations with neurologists, I was (possibly mis-)diagnosed with cluster headaches, administered self-inject medication for the attacks and 2 rounds of Greater Occitipal Nerve injections into the base of my skull to break the bouts of headaches.
August 2012 I had had quite enough…..so packed up my life in London and headed Down Under for some time out and some travelling, where I would end up staying for the unforeseeable future.

Now settled in NZ…until a short while ago, those unhappy times seemed like a distant memory, another life left well behind. I fell in love with NZ: great job, beautiful country, unbelievably easy lifestyle, made lovely friends, met James and fell in love, moved in together…..life was more perfect than I had ever imagined it could be…..the only blip really was agreeing to go through quite major foot reconstruction to finally fix my still very mangled foot. After 2 months of dedicated rehab, life was finally starting to get back to normal.

Then in September 2014 I was diagnosed with Pheochromocytoma. What the…..?

Women are blessed with many ‘issues’ that we mostly just get on with….that is, until an issue changes its guise in some way. Us women are quite in-touch with our bodily functions and know when something’s not quite right. I’ve always had the odd urine infection but to be honest, never that frequently until this year when I had a bout of 6 months recurring UTIs, every 2-3 weeks. Constant visits to the doctor, antibiotics, cranberry juice, powders….the usual routine. But when I had one just before my foot op then one again immediately after, within the space of 10 days, I realised something isn’t quite right. So once I came off the crutches and was able to focus on anything else in my body other that my gammy, swollen hoof….I tripped off to the doc again and put my (good) foot down. No more antibiotics, no more useless advice – what’s the next step to get it investigated and find the root of the problem? She told me there’s a number of investigative tests they can do, firstly being a scan of my kidney….apparently on rare occasions a UTI can be caused by a mis-shaped kidney. Pah, I thought….what rubbish! Still, I thought I’d humour her and book the scan for the following week then we can move on to the more sensible tests.

A week later, sitting in the radiology waiting room after work, I looked impatiently at my watch thinking what a waste of time – I’d rather be in the pool doing my daily hydrotherapy foot rehab session. Little did I realise I was about to be sent the biggest curve ball in my life and soon enough hydrotherapy would be the last thing on my mind.

Lying there in that little dark room with the gel on my belly and the soft voice of the radiologist telling me what the images were on the screen opposite me, I idly wondered how many pregnant women lie here feeling so excited about the first glimpse of their precious little growing bundle. That’s what most women my age would be here for….but me, no, I’m here to have my kidney looked at. Wonderful! Cracking similar jokes about this ironic fact, suddenly I noticed she wasn’t laughing any more, or even listening to me, for that matter. She had stopped showing me what’s what in my abdomen, what the colours mean….she had stopped and was digging deeper into my belly over one area. Making circular movements with the gel over this one area, she outlined a shape. “I know this isn’t what you want to hear, I’m sorry….but this shouldn’t be here at all”. No, no surprise pregnancy for me in that notorious triangular ultra-sound screen….in fact quite the opposite – an unwanted alien lump of tissue the size of a large fist hanging out just above my right kidney where my adrenal gland should be. If I really was here for a baby scan – I would be 4 months pregnant with the size of that thing inside me! My mind emptied as the tears rolled down my cheeks. All of a sudden this wasn’t funny or a waste of time at all any more.

In situations of stress, we have something that kicks in….that fight or flight mode. In this situation I can’t say there was anything to fight for or to flee from. All of a sudden I felt trapped, confused, overwhelmed. Everything goes into slow motion. You go through the motions. Take the envelope from the radiologist containing ‘the’ pictures, book the appointment right away as instructed to see my doctor who would receive an urgent ultrasound report within the hour, call James, cry, wait for James to arrive, wait for the doctor to call me through…..wait. Waiting pretty much sums up the following 3 weeks.

The doctor was quite abrupt, as is her nature, referred me on to a urologist who ‘is very skilled with a laparoscope’, she says. All of a sudden, the mention of more surgery looms again, only a couple of months after my last surgery. Little did I know at this stage, a laparoscope would be a very favourable form of surgery that would not be an option for me. As I stand up wearily to leave, more referrals and pieces of paper I don’t understand in my hand, she stops us…”But don’t go googling this until we are finally sure of what this lesion is”. Lesion? WHAT?

Straight home, James does his usual of sweeping me up and making sure I’m ok. Cooked dinner, poured me a glass of wine, let me cry it off for a bit. We both got straight on the net looking up the credentials of this guy I’ve been referred to. I emailed him to ask when is the soonest he can see me and he immediately replied from Canada, won’t be back for a couple of weeks and he will see me on his return…..err, no thanks, I’ve got an alien inside me! James at that point was truly amazing, he took off the next morning from work (he doesn’t take time off easily!) to research  other specialists. Meanwhile I would continue to carry on as normal, go to work and let James take over. We were pretty clueless at this stage, we didn’t even know what the Adrenal gland was for, let alone what complications can arise from it. Here begins a pretty steep learning curve for both of us into the endocrine system.

The following Monday I have an appointment with a lovely surgeon James had managed to track down. James picked me up from school and I find a gorgeous single red rose on the passenger seat with words inside a little card that I will remember forever. I knew at this moment that I am so lucky to be with such a loving and supportive man. We get to the hospital and my heart is racing, sit in a waiting room looking across at faces of women who give that knowing look. This surgeon performs mainly breast surgery, and I realise sadly that these women are most probably here on some part of their breast cancer journey. Immediately I feel like a fraud, perhaps I’m in the wrong place…..I don’t have cancer! The surgeon meets us with a solemn handshake and my heart races more. To my disappointment, he hardly looks even closely at the grainy ultrasound images I present him with. He simply gives us an overview of anatomy: where it is and what the tumour could be. Tumour?? What???? It’s funny, as these medical professionals keep dropping in such frightening words and terms, they clearly don’t realise the impact it has on the patient. For them, this is what they see every day. For us, we hope to never see it in a lifetime. He books me in for an MRI the following day, and James and I walk away feeling as clueless as we did before. James dropped me back at work so I could find comfort in the smiling faces of my class of little girls. Life goes on.

I’ve had MRI scans numerous times on my ailing foot, and for the brain scan I had for the headaches. But nothing ever prepares you for the ones where you have to be fully enclosed. And never having had problems in my abdomen before, I wasn’t prepared at all for the ridiculous breath-holds you are supposed to perform. I say ‘perform’, because they congratulate you after each one – “Well done Kirsty, that was a long one!”. When your heart is racing anyway, breath a little short – it’s really quite a task. You feel you owe it to yourself to get the clearest pictures possible so they can see exactly what this alien thing really looks like….so no breathing means better pictures. You keep telling yourself that as your chest begins to burn and the seconds feel like minutes….you pray for them to say “and breathe away”. 40 minutes of that, along with some dye injected into a part of my arm they could find that had not been punctured yet from the various blood tests I was also having to take at the time…..it was exhausting and strangely quite emotional. As the bed came out of the tube and they lowered me down, I stupidly asked that question that you should never ask a radiology technician. “I know it sounds silly but can you tell me what you saw? Is it really there? Is it as big as they said?”….as the radiologist looks sadly at my desperate face and tells me she is not allowed to say, I feel the tears of shame rolling down my cheeks. She watches me hobble out of the room on my gammy foot and says “I hope that foot gets better too”. ‘Too????’ What does she mean by ‘too’? Well there must be something else I’ve got to get better from….it must be awful what they can see in there. Sadly, at times like this, your mind takes every little word said to you and interprets it…..everything said to you by any medical professional is over-analysed in your struggling over-burdened brain. There is so much confusion. Even now, post-op, I still have so much confusion….it seems never ending. Thank goodness for my amazing James attending every single appointment with me (even blood tests) to make sure we could both absorb the information, and he could stop me from over-interpreting and searching for the negatives. He has been my voice of reason….if it wasn’t for him, I would have created a very black picture for myself.

One of the other tests I had to do was a 24 hour urine test, to check my adrenal glands’ functionality and levels of hormones produced by the adrenals. This is not pleasant at all, but you’ve got to laugh (or you might cry). You go to the blood test centre, pick up a 4L jug (akin to a milk jug) and a load of pee dishes, and off you go. Start at 6am the next morning after your first pee and then finish with first pee the following morning. Simple enough, you might say. But really, carrying your own pee bucket around for the day at work comes with challenges, namely when wearing trousers, how do you transfer pee from between legs to jug in pee tray without spillage? Well, maybe other people are more skilled at this but I certainly wasn’t. It’s one of those times where you think casually ‘This would be so much easier for a guy!’. Also, how do you go out to dinner as you had planned? Carry the (now rather heavy) pee jug into the restaurant? Lug it to the toilets and back amongst fellow diners? So unfortunately that girls’ night out with Miss P and Kelly was cancelled. In the grand scheme of things, it’s nothing. But another step on the way to diagnosis that I was waiting so patiently for.

A few days later was the big day: the results of the MRI, the other tests and hopefully a diagnosis. The usual racing heart as we approached the hospital and waited for the consultant to call us in. James clutching my hand and telling me it’s going to be ok. In we went, and straight away he opens his laptop to show me the black and white image of my abdomen. There was no confusing what we were looking at, the huge white alien mass was there staring me straight in the face, all 10cm x 9cm x 8cm of it.

A pheochromocytoma. This is the first time I heard this word that would haunt my future.