Tag Archives: Patient story

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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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.

Meta-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.

Drugs

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.