End of the Picc Line

End of the Picc Line

This is an old post from my old, now defunct blog that a reader asked me to re-post for her. This was written in February 2015 when I was caring for my brother who was having treatment for Burkitt’s Lymphoma at the Austin Hospital in Melbourne.

Stepping into the elevators at the cancer-centric hospital, where my brother has lived for the last three months, there is a hierarchy of optimism according to each button that is on offer.

If a person presses the button to the sixth floor, there is a buoyancy to this act, perhaps even a subconscious flourish of the hand as they press, then travel up to the cancer surgical ward. “If the cancer can be cut out, they’ll be okay, right?” They carry flowers, fruit, and confidence in their tote bags. They’re chatty in the elevator with you, with each other, the women checking their lipstick in the mirror. The men adjusting their belts, preparing for small talk, and trying to recall the last time they saw the person they are about to visit.

The seventh floor is for lymphoma, leukemia and myeloma. (Haberdashery, millinery and research is on the third floor.) Those who press the button for this floor are stoic, ready for the fight alongside their beloveds. There is a hardened sheath around them in the elevator, as they talk about neutrophils and platelet levels like some discuss last nights Game of Thrones episode around the water filter in the office. They know flowers aren’t accepted in the ward (infection risk), they work the hand sanitiser dispensers like a pro, and are on first name terms with all staff, including the cleaners. They know where to get masks, aprons and fresh water. They know too much about something they never knew existed until now.

And then there is the eighth floor. This is the palliative care floor and there’s nothing you can say except I am sorry you’re going through this terrible time of goodbyes. Those who press this button either are crying, look like they’re about to cry or have been crying. This button should come with a warning, ‘Abandon all hope, ye who press this button.’ They know it’s over and their loved ones are in-between worlds or floors, as it were.

Sometimes you see people who have started on the sixth floor, then moved up to seven, and then finished their trip at eight. This is what I call the journey to hell. Each new floor impoverishes your hope, until you’re emotionally bankrupt on the eighth.

As my brother approaches his thirteenth week of treatment and inpatient care, with the odd break at my house, he is exhausted of hospital life but grateful we haven’t pressed the button for the eighth floor.

When he started his treatment none of us knew what the hell was going on, and what to do with the diagnosis and the dire predictions from the doctors. He was so ill and we were in ‘Grieftown’ for my father who had died the week before.

Now I look back, I believe finding out what you need in hospital comes only after learning what doesn’t work for you.

For example, shared rooms induce a panic attack in my hermit crab of a brother, so he will spend one night on a pleather lounge in a breakout room, weeping for his dead father, where bad news, like we just got, is delivered to families.

Or learning that antiemetic’s work best for him when taken orally, not through the drip, unless you want to clean his cytotoxic vomit off the breakfast tray

Or that Morphine induces hallucinations in him, where he can’t tell dream from reality and he then he might call me to tell me he’s just been told they can’t do anymore for him and he’s going to die. This then might induce panic in me, causing me to ring doctors and scream at nurses until they tell me he’s fine but insane from morphine and now they are going to try a new drug.

None of these are things you thought you wanted to know but now you do, and you can’t unlearn them.

You learn that when he is neutropenic, you might cry in the hallway because he is so sick and that the nurse, who I’m sure is an angel, will take you into the lounge and let you cry, give you tissues and tell you it’s okay to let him see you sad.

You learn that he likes to be touched during chemo. It grounds him. Massage, hands on legs and hand holding are all accepted.

You learn that he has a blood clot from his elbow up to his collar-bone, and you shrug knowing the dropping levels of his bloods are about to thin that sucker out and if the doctors aren’t worried then you’re not.

You learn that a foot massage will distract during the painful search for a vein in the blood clot affected arm.

You learn how to say words like cyclophosphamide, methotrexate, rituximab and a personal favourite- intrathecal.

You use the abbreviation – ‘Onc’ instead of Oncology ‘cos ain’t nobody got time for the entire word.

You learn that the ‘Bubble’, where he goes when he’s neutropenic is quieter and the nurses are more available. You learn to spoil them with lollies. You learn about their lives and you learn how much they care.

You learn what makes for a good stay and what doesn’t. The bar fridge, which perhaps seemed excessive at the time has proven to be a lifesaver when he wasn’t able to leave isolation. Being able to access food and drinks that he liked, meant he didn’t have to have a feeding tube put down his gullet when he was close to 55 kg. He ate to live and that fridge was an amazing idea. The nurses and doctors were impressed with the ingenuity of bringing it in. ‘No one has ever done that,’ one said to me.

‘No one is my family.’ I said and meaning it. ‘We got this part of it. You take care of the other parts.’

My father was a divergent and lateral thinker. My sister, brother and I all inherited these skills which have proven to be invaluable in this desperate situation.

We learn that being proactive is good. The food, the fridge, the calls to the social worker, the quiet conversations with doctors in the hallway about grief and depression and pain levels, pushed his care into something better than good. We learn sometimes you have to push yourself and those around you to get what is needed, we learn that everyone is doing their best, even when it seems that nothing is happening.

We discover silence was better than no company at all. You learn what time doctors rounds are, and when to ask questions and when to shut up. You learn how rare the cancer is that he has, and how lucky he is to be here. You learnt that doctors can cry also, you learn nurses weep at pain and heartbreak. You learn to be grateful that for now you aren’t pressing the eighth floor button. You learn you’re made of tougher stuff than you thought, and you learn your brother is a goddamn hero.

But most of all, you learn to not ask “What floor?” when someone gets into the elevator. That they will choose their floor, and that this is just another part of the process of accepting and perhaps even letting go.

Blessings to you all.

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