Tag Archives: tumour surgery

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.

Auckland City

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!

Cuisine of the Acute Admissions Ward

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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.