Author Archives: kirstywestwood

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.

Me and my bodyguards

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.

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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