“Can you fill this jug for me please Linds?” “What from over here? You must be joking!”

7:15am

I’m told the first lot of chemo side-effects to kick in are usually nausea, appetite loss, and loss of taste, so I’ve given considerable thought to what my last ‘normal‘ meal should be. My low-fun diet over the past three months has necessarily excluded many of my favorite treats, cheese, coffee, anything fried, anything sugary or processed. After much deliberation I settle on a simple bacon sandwich. Yesterday evening I carefully selected a pack of lightly smoked, free-range, organic bacon from the deli department of the supermarket. The back of the packet assured me that the lucky young pig had been given a loving massage, tickled with a feather, and read a bedtime story before peacefully passing away in it’s sleep and going directly to piggy heaven. I also picked out a loaf of thickly sliced, brown, whole-grain bread. this morning I alternated between taking hungry bites of the butty and swallowing assorted vitamin tablets washed down with cold, sweet apple juice. It was, without doubt, the finest bacon sandwich I have ever eaten.

9:15am

Here we go. I’m at the Auckland Oncology Day Stay facility. I’m Sitting in a teal colored fake leather Laz-Y-Boy, and my Zimbabwean oncology nurse Alice has just activated the main-line in my chest and hooked me up to the IV pump. I’m going to be in this chair for about six or seven hours she tells me. First up on the menu this morning is a litre entree of saline solution with magnesium. The saline is to hydrate me, and the magnesium is to counter the side-effects of the Epirubicin, which is to be my main course.

The pump is set to discharge the content of the clear plastic bag at 1000ml per hour, so by 9.45 it is already half empty. Alice has provided me with a form and a pen. One of the purposes of filling me with all this fluid is to check my kidneys are functioning normally. There is a jug waiting for me in the bathroom with my name on it. I am to urinate into the jug then then record the time and amount on the form. Well, it’s one way of passing the time I suppose.

10:15am

125 ml of saline to go. The treatment room is filling up with other patients. Five of the seven Laz-Y-Boys are now occupied. Four middle aged women and myself. They are obviously all regulars here, greeting the nurses by name, and chatting noisily amongst themselves. The ambiance is more that of a busy suburban coffee shop or a hair sallon than a cancer ward. They sip cups of tea or coffee and leaf through the gossip magazines in between conversation.

10:30am

Another unit of saline, to help wash down the three different anti-nausea meds I’m to have before my main corse arrives. The first one, Domperitone is in tablet form taken with a plastic cup of cold water. The second Ondasetron and the third Dexonethasone are injected directly into my main-line. As Alice pushes the plunger home, I can feel a warming sensation rise in my chest and up my neck, and there is a strange taste in my mouth, which subsides after a few minutes. So far. So good.

11:15am

Photo 27-10-11 4 46 47 PM

First bathroom stop of the day. I shuffle through, pulling my battery powered IV pump along on its castors. My plastic jug is waiting as promised. I squeeze out 400 ml of golden urine, carefully record it on my chart, take a self-conscious photo in the bathroom mirror for posterity and flush it away. When I return to my recliner, Alice is waiting for me with my Epirubicon. We’re onto the serious stuff now. We go through another elaborate ritual of checking and double checking my identity and patient ID number. I’m shown each of the bags and syringes of the prepared drugs for my personal approval, and confirm that each carries my name, and that the expiry date is correct. Alice pulls up a stool, and carefully injects two large syringes of the ruby colored fluid into my chest, followed by another 500ml of saline.

11:45am

Next up is a brief interlude. A 500 ml bag of Manitol which is apparently designed to protect my kidneys form the toxicity of the Cysplatin which is coming up shortly for desert. Very thoughtful. Alice is back with the results of my blood tests from earlier. They are encouraging. Blood-count is 98/100 and my white cells – which fight infection – and platelets – for clotting – are both above average. this is important, because these are only going to go down from here on in. It’s good to know I’m starting from a position of strength.

12:15pm

Photo 27-10-11 4 02 04 PMPhoto 27-10-11 4 10 14 PM

Another pee, 500 ml for those taking notes, and a rather fetching shade of bright pink this time. The Epirubicin obviously didn’t take long to get into my system. Just time for a quick cup of tea and a tuna sandwich – everything tasting fine far – then it’s onto the Cysplatin. This is the third major component of my chemo regime. It’s a clear liquid, delivered in a another one litre bag. The drug is light sensitive, and so has it’s own cute little black over-coat to protect it form the sunlight streaming in through the large windows behind me. According to my information sheet, side-effects of this little beauty are, Peripheral Neuropathy, that’s nerve damage causing numbness and tingling in the hands and feet, Tinitus and hearing loss, and changes in taste. (I’ve already done all the taste jokes I can think of, so I’ll let that one slide for now.) where were we. Oh yes, bruising, bleeding, diarrhea, anemia, blood clots, infertility and various unspecified allergic reactions. I’d have to say that this one scores pretty low on my cost/benefit analysis sheet.

1:20pm

The last leg. Another 1000 ml of saline and magnesium to flush out my kidneys. Alice tells me I should be all done by 3:30. Feeling slightly saddle-sore but otherwise just dandy. The other punters have been drifting away over the last hour or so, just myself and and one other here now. I’ve just spent a pleasant half-hour chatting with a chap from Taupo. 39 years old. advanced melanoma in his lungs and lymph nodes. His dismal prognosis is matched only by his sunny and upbeat disposition. When not cracking jokes, he sits stoic and relaxed in stubby shorts and singlet, looking every inch the quintessential Kiwi bloke. A farmer or outdoorsman of some kind would be my guess, that would be certainly consistent with the melanoma. The only slight incongruity is the laptop and headphones he uses to pass the time watching movies. He’s on the same 21 day cycle as I am so there’s a good chance we will meet again in three weeks time. I hope so.

1:45pm

My pee chart is coming along very nicely. It’s strangely addictive, like some kind of weird and misguided school science project. I’m up to just under two litres so far which is definitely a new personal best. I don’t know what the hospital record is but given the conditions – overcast with a slight cross-wind, I’m very pleased with my performance. I can tell that nurse Alice is quietly impressed too.

2:15pm

Photo 27-10-11 4 16 45 PM

Regular followers of my journal will know that I’m not above trying for a cheep laugh at the expense of the medical staff. This unfortunately is not going to be an option today. These ladies are without exception amazing. Bright, funny, relentlessly cheerful in the face of all kinds of adversity, caring, compassionate and clearly all passionately dedicated to their work. No effort is spared to ensure our physical and emotional comfort during our stay. Alice in particular is delightful. She’s picked up early on that I’m fascinated by the whole process, and want to know exactly what everything does, and how every bit of equipment works. It’s probably a guy thing I know, my inner control-freak desperately trying to impose some illusion of self determination onto the proceedings. She recognizes my need to know, and takes the time to patiently explain in exhaustive detail, every stage of the process, the reasons for every step in the elaborate arrangement of tubes, valves, reservoirs and clamps controlling the flow of chemicals into my body. She tells me why the various liquids are administered in the carefully designed order of service, and what each one does. The good, the bad and the ugly. I even get a brief lesson on cell metabolism and reproduction. These girls really know their stuff. Its immensely reassuring.

3:15pm

If been sitting here for the best part of seven hours now. First in, last out. I’ve quietly observed a dozen or more patients come in to receive their treatment. Never one to shy away from a hastily conceived and sweeping generalisation, here’s what I think I’ve seen today. A dozen different people, maybe half a dozen different cancers all at different stages. All on different chemo regimes, some almost completing their treatment, and a one or two, like me, just starting out. Differences apart, they seem to me to fall into two distinct and easily separated groups.

Group A share the following characteristics. They breeze into the room, all smiles and hi-fives. They welcome their nurses with a laugh or even a hug. They know their names, and the names of their kids. They have a tenancy toward brightly colored, comfortable clothes and patterned head-scarves or bandanas over their shiny bald heads. They make light, or neglect to mention their sickness, mouth-sores, or painful hands and feet unless pressed on the matter. They make self effacing jokes about their constipation and sleepless nights.They endure their treatment with grace and humor, Even here in their darkest hours, they radiate light and energy. A lust for life, as Iggy would say.

Group B are mostly quiet. Self contained. Even withdrawn. They watch me closely, but look quickly away when I return their interest. They wear drab office clothes and stiff leather shoes. They have clenched fists. Clenched buttocks. If they had hair, that would be clenched too. These people have almost perfected the art of invisibility. They arrive without my noticing, and leave the same way. You could share a phone booth with one of these feint, semi-transparent folk and not even notice they were there. They have a certain air about them. Dark, lost, resigned. Even defeated. When they speak, it’s quietly, and usually to grumble about their bad back, nausea or other symptoms and afflictions. They are quick to call a nurse over to fetch them a glass of water rather than get it themselves, and quicker to criticize when it doesn’t arrive promptly. They’re not rude exactly, they’re just having a bad time. They seem to lack empathy with their carers, and compassion for their fellow travelers.

So. Two questions. First, am I a Group A guy, or a Group B?

Well, in spite of my grey t-shirt I’d like to think I’m a A. For now at least. It’s easy to be accepting and magnanimous at the moment of course, I’m feeling chipper and on top of things emotionally. I’m at the start of my treatment and full of hope and faith. I trust the process, and I trust myself to have the discipline and strength to see this through. I also know I can also rely on Jo and Becca to give me a short, sharp slap if I start to develop any Group B tendencies.

Which brings me to my second question…

I wonder who ends up living the longest, the A’s or the B’s? One lot of studies I’ve read swear that a positive and optimistic outlook has a demonstrable effect on life expectancy with, or without cancer – and that is certainly the commonly accepted folk wisdom. I’ve seen other reports that claim categorically that there is no empirical data that state-of-mind has any influence either way. I know where I’m putting my dollar.

3.45pm

For the statistically minded. My final score on the pee-o-meter was a magnificent 3,450ml, just shy of three and a half litres. I feel I should be eligible for a certificate of some kind.

7:00pm

I unexpectedly and pleasingly find myself tucking into a huge plate of assorted salads, new potatoes and spiced chicken pastry. It tastes good and I polish off the lot. The meal is book-ended with Anti-Emetics and my first hefty 1300mg dose of Xelada. Everything has the good manners to stay down, and we even manage an evening constitutional around the reserve with Sophie Dog.

Maybe this is going to be a walk in the park after all.

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  1. charlotte gray says:

    Hi Lindsay, we’ve met a few times at the old Automatic office … I’m Greg Wood’s partner – Charlotte. I really just wanted to let you know that I’ve been following your blog and that my thoughts are with you. Aside from it being fantastically written and laugh-out-loud (‘LOL’ even..) funny – There is a huge impact in the honesty of your words and something profound about that when dealing with what most would consider such a delicate topic.
    I’m also afflicted with a fascination with all things medical and many times have wanted to document moments I’ve found myself in in hospitals, but have always lacked the courage – So good on you for doing it, especially in the face of what you’re going through… it’s fascinating and massively informative too. I await each new post!

    Keep up with the optimism, as you say – there’s always conflicting studies about what works… but how can one argue with seeing things optimistically? You’re obviously a realist and that mixed with positivity and a good dose of hope is surely the way forward…

    Take care,
    Charlotte.

    • Linds says:

      Hi there Charlotte,
      Of course I remember you! Very glad you’re enjoying the blog. Funny how writing becomes easy when there’s something interesting to talk about. And whatever else this cancer business is, it’s certainly interesting. It’s mostly for my own therapy – it’s a good way of processing experiences, and also for my daughter who I hope will read it one day – but I’m also keen to try and do something to debunk the whole fear and hysteria attached to the “C” word for the benefit of anon else facing it.

      I’ll try and keep it interesting… Say Hi to Greg, tell him to get in touch, I’d love to catch up. Cheers Linds

  2. Ian and Celia Smedley says:

    We well remember your starting in the corner and working your way (somehow) to a finished picture

    Keep your pecker up – or maybe not when you’re filling the jug!

    Love

    Ian and Celia
    xxxxxxxxxxxx

  3. David Smedley says:

    I couldn’t resist and had to Google it. The Plat in Cisplatin is Platinum. Maybe you should charge them next time they need to take blood !

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