Category Archives: chemotherapy unit

by

Tuesdays at the Chemo Unit, Feb 26 and Mar 5, 2013

af7f6ffe85a811e2b45222000a1f97b0_7

I took this photo on the way to the hospital today. It seems to me this is a sign we should all be shown at birth.

Or it could say “Warning: Life is deep and messy and sometimes you can’t see the light.”

****

Last week I had my monthly appointment with my doctor. Because I’m reliably stable, I was given to the young and personable Resident to see. It was our first time meeting and he was very restrained as he reviewed the usual questions.

Then came the  moment when he asked me, “Can I examine you now?”

His eagerness made me laugh and I replied, “I know, you’re just dying to feel this liver, aren’t you?”

He laughed casually as I climbed up on the table. Then he started to actually examine the breadth of my liver and I saw a growing gleam in his eye.

“Oh, this really is exciting! I’ve never seen a liver like this before”

So maybe I shouldn’t feel satisfaction in having such a uniquely big liver, but I did feel a sense of accomplishment. If I’m to have a big liver, I want it to be the biggest. We might as well have some ambition in this life.

Sam

by

Tuesdays at the chemo unit, Feb. 19, 2013

download (1)

If you ever spend time at a Starbucks you will hear of an infinite variety of drinks ordered to the exact specifications of each customer.

“May I have decaf grande soy sugar free iced caramel macchiato?”

“A tall nonfat unsweetened green tea latte please.”

“I would like to order a venti mocha frappuccino with soy mocha drizzle, matcha powder, protein powder, caramel brûlée topping, strawberries, two bananas, caramel drizzle frappuccino chips and vanilla bean.”

download

I feel a bit like a Starbucks customer when I get my injection each week. The subcutaneous injection can be quite painful and leave a big bruise if the nurse does not administer it quite right. And what constitutes “quite right” varies from person to person. I imagine each person giving their own specific directions to the nurses.

“The secret is to leave a little air pocket in the needle.”

“Keep the skin  flat and inject quickly.”

“Pinch the leg hard and inject really, really slowly.”

“Can you put the heating pad on the site first to warm it up and then inject the needle at an exact 90 degree angle and whistle Stairway to Heaven to distract me?”

In an earlier era when the medical professionals were more god-like, would we have  dictated our own treatment in the same way that we order coffee or is this behaviour a sign of the times? On  the one hand, the patients feel more empowered now to ask for what they need (and truly, when the nurses do it the ‘right’ way, I experience significantly less pain). On the other hand, do we sometimes just need to let the professionals get on with their job and not pester them with onerous demands to meet our every need (maybe the whistling is a bit out of line)?

I’ve been very proud of my increased ability to advocate for myself since getting sick. At the same time, I’m just one of thousands of patients who want individualized care in a financially stressed system. I realize I must balance my needs against those around … ” Hey, slow down with that needle!”

Sam

by

Time for contemplation

coal-hole-2

Jeanette Winterson, in her fantastic memoir Why Be Happy When You Could Be Normal, writes:

“The one good thing about being shut in a coal hole is that it prompts reflection.”

She goes on to meditate on life, happiness and normalcy; results of the reflection that occurred during the many hours she was locked in the coal hole by her mother.

Now I don’t mean to suggest that a hospital waiting room is like a coal hole, but there is a similarity of ‘in-betweenness’ in the situations. In both cases, the job we have is to wait for the next phase, whether it be freedom from the coal hole or the opportunity to go in to an appointment. How we use that time is up to us, of course.

The waiting room does have more distractions than the coal hole, which is why, perhaps, Jeanette’s in-between time was more productive and profound than mine generally is. I have returned to my old ways of reading, writing and checking email in the time before I am called in. I have lost some of my capacity to just sit and ‘be’ during this time.

I would like to reactivate that part of me that knows how to wait. That will be my goal for tomorrow’s visit. Who knows what deep thoughts might appear. I’ll keep you posted.

Sam

by

Belly Laugh Friday, December 21, 2013

As most of you know, my strange illness has given me a belly that makes me look about seven months pregnant. After so many years I have been able to find the humour both in the queries and the responses I give to the queries.  Sometimes I actually look forward to bizarre responses because they make such good stories. Belly-laugh Fridays is my chance to share these humorous tidbits with all of you. Enjoy.

Sam

 

24Sphere

 

This week’s visit to the chemo unit presented me with a perfect story for today. In fact, knowing I could write about this event, made the whole thing much more pleasurable.

This dialogue is between myself and the female  patient sitting in the chair next to mine.

Other patient (in a voice that could be heard all over the ward): WELL, WHEN ARE YOU GOING TO HAVE YOUR BABY?!

Me (trying to whisper): Well, actually, I’m not pregnant.

Other patient: WHAT??

Me: I’m not pregnant

O.P: YOU’RE NOT PREGNANT?

Me: I have a big liver

O.P.: YOU JUST HAVE A BIG BELLY?

Me: I have a big liver

O.P.: YOU HAVE A BIG LIVER? A BIG LIVER? HOW ABOUT THAT? I’VE NEVER HEARD OF SUCH A THING. YOU HAVE A BIG LIVER. HMMM

 

And that was the end of our conversation. She simply got lost in meditating on a big liver.

I reflected that maybe it was good that we had this very public conversation. Now lots of people would be forewarned about my belly. Perhaps I should plant someone like this woman in every new situation I find myself in. It would break the ice and people wouldn’t need to ask the question. Hmmm. Any volunteers?

 

by

Tuesdays at the Chemo Unit, October 30, 2012

Once again, my Tuesday post is posted on Thursday. Let’s just pretend.

 

I just discovered Instagram (once again, I demonstrate my status as a late adapter.) This is the view from my chair today. It was a black and white kind of moment when I took this. Just another ho hum day in the chemo unit. Getting chemo seems like a minor event next to a hurricane. This is just fine by me. I like minor events better than I like crises (of course interesting things can happen during crises, but I will leave that philosophizing for another time).

So yes, going to the chemo unit can become a mundane event – the hours waiting, the monotonous décor,  the familiarity of the staff. Kind of like going to the hair salon. Of course, my chemo doesn’t make me puke my guts out and I’m not in a moment of crises about potential outcomes, so I can only speak for my own experience at this moment.

My nurse was heroic. She was literally running today to keep up with the demand, yet still took the time to be friendly and to do all that was necessary to look after me (above and beyond the call). Yes, she is my hero. Not to mention that she speaks with the most charming Irish accent.

Her only fault is that she is the “let’s just rip this band aid off in one quick sweep” kind of nurse. This is better than the “let’s pull it off excruciatingly slowly” kind of nurse. I like the nurses who swab the bandage with alcohol and it just slips right off. The removal of the bandage at the end of the treatment (taking a fair amount of arm hair with it) is often more painful than the needle.

On this day, I kept pushing the boundaries during my treatment:

“Can you give me my iron treatment over 2 hours instead of 3?  I do it all the time.”

“Can’t I just get my Velcade shot while I am having my iron treatment instead of waiting until after? It will save me so much time.”

“Can you do my bloodwork while I’m here? Then I don’t need to go to the blood lab.”

Yes I’m the wild one. Pushing that envelope at every turn. On the one hand I felt a little badly for continually asking the nurse to change things when she was so busy. I guess I could have been more compliant. At the same time, being compliant would have added at least another hour to my stay at the hospital. I was very polite about the whole thing. What would Miss Manners say?

Hope you are all safe and dry.

Sam

by

Tuesdays at the chemo unit, Tuesday, October 2nd, 2012

So, it’s not  Tuesday, but I don’t seem to get to write this post until Thursday. Let’s pretend.

Tuesday was a loooooong day at the chemo unit. It was the day I received my iron infusion (a grande decaf soy latte iron). It seems there was a tubing problem. The darn little machine kept making that annoying dee-dee-dum sound  - a sound that was catching all over the ward.

Of course my restless legs were in full gear, so sitting for that long was something of a trial. But I was reminded of an incident that happened this summer.

We live in Stratford, Canada, a town known for it’s famous Shakespearean Theatre Festival. My son and I gorged ourselves on live theatre this year.

One afternoon we were at the main theatre to see a production of Much Ado about Nothing when my legs kicked into high gear. I tried to talk to them, to tell them to calm down, but instead I found myself squirming like crazy, stretching and unstretching my legs and generally being a nuisance to the people around me. I decided I had better leave. My 13-year old son was indifferent to my leaving and told me he’d meet me at home (a 13-year old who doesn’t want to miss any of his Shakespeare play – does it get any better? )

As I was leaving the theatre I was accosted by one of the ushers.

“Can I help you with something?’

“No, I just have this problem with restless legs.”

“Are you coming back?”

“No, I think I’ll just go home.”

She looked pensive for a moment and then said, “Do you think if you were in the director’s booth you could stay? You could walk around in there and still watch.”

I hadn’t been enjoying the play too much. Claudio’s treatment of Hero is despicable (especially knowing she’ll take him back in the end). However, this was an opportunity too good to miss.

“Sure, I’ll give it a try.”

She led me to an almost invisible door and, after climbing a few steps, I had the whole theatre spread out before me. I walked up and down the room, did some exercises, had a snack and thoroughly enjoyed this way of watching theatre.

Too bad I can’t exercise while I’m getting my infusion…

Sam

by

Tuesdays at the chemo unit, June 19, 2012

Today my husband, Daniel, drove me in for my treatment. While I love to have the time with him, there is always a bit of trepidation about these trips.

You see, I actually like to go alone to my appointments. I feel independent and free to do whatever I need to do. I can chat with people or be completely quiet and alone. If I’m tired I can just sit and nap. I can be very focused on dealing with whatever that day brings.

When you bring someone, all of a sudden you have a guest that needs looking after.  I know, they are there to support me, but the reality is that my “support” person, can’t stand waiting around hospital waiting rooms. He is not as used to the waiting as I am. He wants to be outside.  He gets fidgety, which drives me crazy.

We do have our strategies. Daniel goes for walks during the long wait times. If it’s a tired day and I need the elevator, he takes the stairs. He paces around the long hallways observing the people there. It works out okay.

Once I’m out of the hospital I’m a different person. I don’t have that same need to be alone and focused. I feel more social and more able to think beyond my own needs. Having Daniel there now seems festive. It seems that I’m only curmudgeonly in the hospital.

Sam

by

Tuesdays from the chemo unit, Tuesday, April 24, 2012

There’s a reason I didn’t post yesterday from the chemo unit. After my article last week I decided to try an experiment. I decided that I would try to do nothing while I waited. Or, rather, I decided I would try to actively wait instead of just filling time until my appointment. It was a double trial because I had a clinic appointment before my chemo.

So I bet you are all wondering how I did. I bet you’re wondering if I could last without reading, writing or playing computer scrabble. Well, to you naysayers, I tell you that the first appointment went just fine. I started off by sitting and watching the world go by. I used the time to do some planning in my head for my writing. Planning is my default state when I’m not occupied elsewhere. After a bit, however, I tried to let even that go.

After about 15 minutes, I started to drift and then fell asleep. Sleeping was an excellent way to make the time pass quickly, but it felt like cheat. Besides, it’s not comfortable to sleep in the waiting room chairs. After my sleep I began to get antsy and was tempted to just quickly check my email or check the weather. But I resisted and actually found that I became quite relaxed. So relaxed that when my blood pressure was taken in my appointment, it was nice and low.

Hmmm. So by not doing anything or by actively deciding to make waiting my occupation, I became more relaxed.

I did give in when I went up to the chemo waiting room. “I’m sure I’ve got important emails to answer!” I thought to myself. “I’ll just check them and then begin my “wait” again. This time, however, I was taken in so quickly that there was no time. Next week I shall set myself the challenge to make it through the entire visit without a distraction. How long can you wait?

Cheers until next time.

Sam

by

Tuesdays from the chemo unit, April 17, 2012

Today is my long day at the chemo unit. Once a month I get an iron infusion which takes a few hours (watch out Popeye). Because I know it is my LONG day, my girl scout personality kicks in. I come prepared. As I walked over here, I did an inventory of everything I brought with me:

To do:

- my computer – with three running projects

- my book

- my iphone with email, scrabble, audiobooks and music

- my journal (but forgot the pen, dang)

 

 

To eat:

- some leftover pizza from last night

- a sandwich

- some leftover salad

- carrot sticks

- berries

- a pear

- some cookies

- some toasted almonds

- water and tea

(my appointment is at 9:30. At about 9:35 I’m wondering how soon I can break out the food)

 

Additional sundries:

- band aids

- hand cream

- lip balm

- spare bobby pins

- just about anything you might need (except a pen)

 

As I pop another almond in my mouth, I reflect on the other people in the unit.  Many of them walk in with nothing more than a wallet.  I’m in awe. Maybe it’s a zen kind of thing to be able to travel light, have few needs, and be able to sit for four hours with nothing to do. Maybe these folks are meditating. Maybe I am addicted to stimulation. Or maybe they just didn’t follow the motto “be prepared”.

 

Sam

 

by

Tuesdays from the chemo unit, March 27, 2012

Looking around the chemo unit waiting room I wonder about all of the stories that are sitting here. What kind of illness do people have? How are they feeling? How strong are the drugs they are receiving?

What do they think about being here? Are they grateful for the wonderful treatment we get ? Are they anxious about how they will feel after the treatment? Are they frustrated with waiting? Are they worried about their future? Are they simply non-chalant, just passing the time.

I see some patients who look sick – they are thin and frail, pale, bald. Perhaps they have a cane or they are being pushed in a wheelchair. Others are stealth patients. They look healthy, they have all their hair.

Where have they come from today. Did they have to drive far? Did they have to leave work or are they working at all? Are they here alone or did they bring a spouse, a parent, a child, a friend? Are some coming from farms? Did they have to wake up especially early to do chores before coming. Did anyone fly in from the North? Do they have a regular seat on one of those tiny planes? Did they walk over from a nearby neighbourhood?

Where did they come from originally? Are some from exotic locales who are shivering because of the unexpected cold snap today? Are others from war-torn countries, poor countries who are grateful to be sick in this country in this time? Are there some  who are lonely for a homeland and find Canadians cold and unfriendly?

I want to connect, to learn the stories, to share mine. Yet I’m shy to sit down and begin talking. There is such a strong sense of privacy, of just holding it together that it seems rude to intrude. Occasionally I can perceive an openness and begin a conversation. For the most part, however, I simply imagine the stories behind the faces. I look for clues in expressions, in hands, in feet. In my imaginings, there is always a happy ending.

sam