Tag Archives: adrenal glands

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.

drain

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.

drain bucket

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’.

hospitla view

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. 🙂

fireworks

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…… 🙂

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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.

Upside-down sketches

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.

Me and James

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 timeI’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.

MRI of tumour