Tuesdays from the chemo unit, February 28, 2012

Due to technical difficulties, I’m posting my Tuesdays from the chemo unit on Wednesday.

Yesterday was a long day at the hospital because I was getting an infusion of iron (doesn’t that sound delicious). Sitting for so long got me thinking about the chairs in the unit.

The chairs in the unit are giant – they are built for giants. I think the idea is that  chemo patients that have to receive treatment over the space of a few hours want a big comfy chair to relax in. Well they may work for a very tall large person, but I feel dwarfed by them. I feel like a little kid sitting in her grandpa’s naugahyde la-Z-boy, my feet dangling down inches from the floor. Sitting there for four hours is not a comfortable venture.

It seems to me that with a little creativity and imagination a truly adjustable chair could be developed. I did a fair bit of research (not exhaustive I admit) and found some chairs that looked more comfortable than the ones in the unit now. There was not one that I found, however, that could  provide a universal fit.

Here is what my ideal chair would be like. Glen are you listening? (My friend Glen Hougan is an innovative industrial designer – maybe he will design this chair – check out his site at  ).

My perfect chair:

- adjustable height, adjustable width and adjustable seat length.  People come in all shapes and sizes.

- adjustable foot rest.

- ergonomic design for reducing back pain.

- adjustable inflation of back – eliminate the need for extra pillows

- the chair should recline

- a table that swings over the chair for eating or working would be helpful to most of the patients I see trying to balance lunch or a computer on their laps.

- if I was to be really decadent I would include a drink holder and a reading light.

Of course the chair should be eco-friendly and affordable.

 

There – it’s not too big a list. For those of you who get to use hospital chairs what else would you add to the design?

 

I imagine there are whole theories about creating designs that can adapt to the individual. Is it that hard? Glen do you want to weigh in on this?

 

Sam

 

Ultra Sounds Monday, February 27, 2012

Today’s entry takes a comic turn. For those of you who rely on the trustworthy advice of Trip Advisor, here is a Trip Advisor “Review” of Princess Margaret Hospital in Toronto. This is written by a friend of mine, Jim Barnes, a multiple myeloma patient. We share the same wonderful hematologist and receive the same medical treatment at the chemo unit (although he’s a Thursday guy and I’m a Tuesday gal). For those of you who are are not from this area, Princess Margaret is a remarkable research and treatment hospital for cancer.

Enjoy!

Sam

 

A great place for cancer care, if you are not too demanding 

by Jim Barnes

 

If you are considering getting care for your cancer, Princess Margaret might be a good choice. They have world-renowned specialists, excellent nurses, and a generally efficient and caring staff. Some of the facilities have been upgraded, but others are showing their age.

 

Accommodation at the clinics, chemo unit, and blood labs is sometimes a little crowded. Advance reservations are definitely recommended. Palapas are hard to find. Waiting room chairs vary a bit in their comfort level. One positive is that there are seldom problems with people using towels to reserve their chairs. The chairs are not too bad if you’re feeling fairly well, but they are not recommended for those in pain–a good idea to take your pain killers and bring extras.

 

In my experience, the physicians are dedicated and give guests as much time as they require, and this can lead to some long waits. The nurses do what they can given the constraints they are under. After getting my chemo fairly quickly on my last visit, the nurse explained how lucky I was because for the previous two days staff shortages had kept one chemo unit closed and this caused 3 hour waits. Tipping is discouraged, though the occasional kind or grateful comment will go a long way with the staff.

 

The clientele varies in age from the very young to the elderly, with a preponderance of older guests. Dress is usually casual. Bathing suits are discouraged in the restaurants and clinics. This does not seem to be a party crowd.

 

Food choices are somewhat limited, though we’ve only used the “a la carte” and I can’t comment on the “all-inclusive” option. There’s a Tim Horton’s with a limited menu and a Druxy’s. The lines for the Tim’s are often fairly long, though the staff is efficient. The Druxy’s offers their usual fare and it’s not bad, though definitely not gourmet. If you’re willing to go off-site, Baldwin Street, one block east, has a good selection of restaurants. Parking in the area is expensive, though until Toronto goes through with the proposed changes to handicapped parking, you can park on the street without charge with a handicapped permit, even in the restricted spaces opposite the school.

 

Within the hospital, the bartenders are volunteers and usually quite pleasant, though the drink choices are somewhat limited: no wines, beer. or pina coladas. They will offer a cookie to go with your drink. Entertainment is usually limited to solo performances by wiling volunteers. Show times are a little haphazard, usually over the noon hour on the main floor. We haven’t stayed for any of the late night extravaganzas or attended the discos and so I can’t comment on them. A few large screen televisions are scattered around, but these are usually tuned to CP24.

 

In the three years we’ve been traveling to PMH, management has made some improvements, perhaps as a result of some earlier negative postings. Waiting times for the blood labs are definitely shorter, and the new chemo unit is much more comfortable with water, tea, complimentary newspapers, and available television.

 

Check-in is somewhat impersonal. The hospital seems to have a policy of wanting to keep check-in staff away from guests. Guests are required to leave their  cards in plastic boxes rather than to seek personal service.  As well, even when the staff know that the waits will be long, they are discouraged from informing guests of this. This means that guests sometimes sit for long periods when they could be elsewhere: visiting friends, shopping, or going out for a meal. The pagers in the chemo unit at least allow for some flexibility about where you spend your time. Checkout is quick and there are no lineups of staff looking for tips at the end of your stay.

 

Overall, PMH is a great place to visit and receive care. It’s only 2 or 3 stars for accommodation, but 4 stars for care.  It is definitely not for those who aren’t patient with waiting or who are too demanding.

Cancer and humour

I finally saw the movie 50/50, the story of a young man diagnosed with a rare form of cancer who is given a 50/50 chance of surviving.  I thought it was great. It was  funny and poignant without being hokey or melodramatic.

I have been reflecting upon why I am drawn to humorous approaches to cancer and other serious illnesses. I love the sharp cancer cartoons, the jokes and the ability to see the humorous side of one’s situation. Cancer Made me a Shallower Person: A Story Told in Comics is still, hands down, my favorite book about cancer.

This does not mean I think cancer is funny. It also doesn’t mean that I see humour as a way to “cheer up”. Rather, it seems to me that with humour you can dig a deep hole without saying too much. A well-placed, biting joke says way more than a lecture. A cartoon that captures a particular expression supplemented by a good one-liner  says as much as an essay. Humour makes it easier sometimes to go to darker places without fear.

Making jokes about my own experience also reminds people that I am not my disease – I am someone who can experience and express a perspective about  my disease.

I just stumbled upon this great article 

The article discusses the difference between humour and the tyranny of cheerfulness  which is sometimes manifested in the ubiquitous pink ribbon.

In this quote the authors capture this difference.

Certainly hopefulness is a very real and necessary aspect of dealing with the hardship of cancer, but patients feel a significant drain when they feel like being positive is a duty. Moreover, such an obligation keeps cancer patients from feeling worried, angry, depressed – all of which are normal human emotions.

Humor lets women acknowledge these feelings and also exert their own sense of control—to laugh at that which threatens. Not always at first, when the diagnosis and chemotherapy strike hard, but over time yes. Laughing showed they were human, a person who was alive, not caught between a deadly disease and forced societal optimism.

So laugh on I say! But don’t necessarily expect me to be in a good mood.

Sam

Art for Cancer Foundation Art Show

 

The Lady In Blue by Jyne Greenley – from the ART For Cancer Foundation art show

 

 

I was able to attend the ART for Cancer Foundation art show opening last Friday night at Toronto City Hall. It was very exciting to see my painting framed and the accompanying poem in print. Sadly I did not get a picture for you all to see.

Taken as a whole there was a tremendous body of work there. The stories represented at the show were powerful and often sad. At the same time, each of them had a component of joy as expressed through the art work. People who had never done anything creative found that they had an unexpected creative muse lying in wait. Others who had already been creating found tremendous comfort and healing from continuing with their efforts.

Walking through and breathing in these stories was an intense experience, but, I also felt, a hopeful one. As if the power of the art could transcend the illness.

The has many new workshops and events coming up. Do go and check out their site.

 

Sam

Tuesdays at the chemo unit – February 21, 2012

Today I’m not even writing from the chemo unit. I was early and they were able to take me in right away – so I guess you could say my wait time was -1 1/4 hours.

Going to the chemo unit makes me think about my name. Legally, my name is Gayle, Samantha. When my parents got me home from the hospital, they decided that Samantha suited me better than Gayle. I am glad they made this choice.

For the longest time, the Ministry of Health allowed me to be G. Samantha Albert on my health card. This made it clear how to address me. About a year ago, however, they made me write out Gayle Samantha Albert. Of course, my hospital cards all had to follow suit.

All of a sudden I started being called “Gayle”. For the first while I would do my little song and dance “Actually I go by Samantha, well you can call me Sam and it’s just legally that I go by Gayle” and sometimes they even get the story about my parents. Now I am tired of the song and dance. What can it hurt to be Gayle one day a week? I have to work at remembering. Sometimes I am poked out of a reverie by someone calling “Gayle, Gayle” and realizing they are speaking to me.

It’s a bit strange to be known by another name, an alter ego. Maybe on the days I’m “Gayle” I can change my personality. What does a “Gayle” act like?

Sam (a.k.a. Gayle)

Ultra Sounds Monday February 20, 2012

Good morning all. It is a sunny, crisp winter day in Southern Ontario and everything is sparkling.

Today I bring you the last part of the Barbara Crooker/Irene Miller poetry/photography duet. It has been a pleasure to bring together the works of these two talented creatives and I hope that perhaps they have inspired you to pick up pen or camera (or paint brush or video camera). We welcome new submissions all the time.

If you want to learn more about Barbara and read more of her poetry, please check out her website at

To see more of Irene’s photography you can find her at

Please see the Ultra Sounds Mondays archives on the left for the first three parts of this series.

Sam

 

REQUIEM

by Barbara Crooker

It is early March, each day a little bit greener,

crocus and snowdrops already in bloom, daffodils

sending up the tips of their spears.

When summer comes, we will take you to the river,

trickle your ashes through our fingers.

You will return to us in rain and snow,

season after season, roses, daisies, asters,

chrysanthemums.  Wait for us on the other side.

The maple trees let go their red-gold leaves in fall;

in spring, apple blossoms blow to the ground

in the slightest breeze, a dusting of snow.

Let our prayers lift you, small and fine as they are,

like the breath of a sleeping baby.  There is never

enough time.  It runs through our fingers like water

in a stream.  How many springs are enough,

peepers calling in the swamps?  How many firefly-spangled

summers?  Your father is waiting on the river bank,

he has two fishing poles and is baiting your hook.

Cross over, fish are rising to the surface,

a great blue heron stalks in the cattails,

the morning mist is rising, and the sun is breaking

through.  Go, and let our hearts be broken.

We will not forget you.

 

 

ON THE RIVERBANK

by Irene Miller

Compliance and Tupperware

The term compliance is one that is used to describe a patient doing what he or she is told to do. If a drug is prescribed, compliance would be to take it when and how it is supposed to be taken in order for it to be effective. Showing up for doctor’s appointments and preparing appropriately for a procedure would be other examples. The term “compliance” infers that when a patient does not do what is asked that they are just being willful or stubborn. I always think of a naughty child when I hear about a non-compliant patient.

I was thinking about compliance the other day with regard to Tupperware. We have the same kind of Tupperware drawer that probably 95% of North Americans share. It is chaotic, it is almost impossible to find a lid that matches a container and it is crammed full. Every so often I get inspired and I create a system for the drawer. Nothing too complicated- the lids in one part of the drawer, the containers in another. Small, lunch size containers separated from the large leftovers containers. It’s not rocket science. When it’s organized everything has a matching lid and the drawer closes nicely.

I explain this simple system to my family and they all agree that this is much better and, ooh, isn’t this nice to have it organized.

The system lasts maybe two days. Then my son, who is in a hurry to finish his job of putting dishes away throws everything in the drawer in a big, jumbled pile. My husband will impatiently stuff containers in there that are sitting out on the counter.

I can live with this. But it does cause me to reflect. How can people that can’t even keep a Tupperware drawer organized, keep a complex system of pills organized? How can you keep doctor’s appointments straight when you are seeing seven different doctors? How can you remember all of the instructions before a procedure? It may not be a matter of disobedience when patients do not comply, it may simply be a matter of too much complexity for someone that is not organized or a planner by nature. Or there may be other issues such as language acting as a barrier.

There are wedding co-ordinators, but I’m sure lots of people could use an illness co-ordinator in order to help them comply with a variety of inertwined instructions. Or maybe we need an app?

Sam

Weaving a network

As this little blog grows, what strikes me is how different people are being woven into the conversation here at Ultra Sounds. My hope is that soon we can create a forum where you can interact with each other. I would love to see the conversation become multi-dimensional.

On this note, I just reconnected with a dynamic woman from my past named June Holley. June is from Appalachian Ohio and is the mother of networking. She has an amazing ability to bring together people and watch them take off together in successful collaborations. June used to work for an organization called the Appalachian Centre for Economic Networks (ACEnet). Through her many years there, she experimented in all sorts of ways to see what factors foster and enhance networks. She now brings her expertise to work with organizations all over the world.

Her new title is  network weaver which she defines in the following way:

A Network Weaver is someone who is aware of the networks around them and explicitly works to make them healthier (more inclusive, bridging divides). 

Check out her site at  if you are at all interested in how people come together in successful ways and some of the “science” of networks. She is prolific in documenting her experiences and astute observations.

Sam

Sideways support groups

I’m not really a support group kind of gal. I have nothing against support groups. In fact there is an excellent support group called the Canadian Amyloidosis Support Network that is an amazing resource and advocacy group for people with my illness () . It’s just that even though I’m one of them, I don’t always like to go and hang out with sick people.

But at the Art for Cancer Foundation workshop that I attended a few weeks ago, I caught a glimmer of how a support network might be helpful. The focus of the day was on our art work, but while working away, we began to speak about our own experiences. In the break while we looked over our initial paintings, we compared notes. “Oh you go to the chemo unit on Fridays! I’m there on Tuesdays. What do you think of the new design?”

It was an indirect  manner of connecting with people – kind of like when you do dishes with someone. Somehow not looking at each other and having something to occupy your hands lends itself to opening up.  The art, while lovely in and of itself,  became the excuse for being together and connecting across the differences in ages and health. It was like getting support sideways.

So maybe I could say I am a sideways support group kind of gal (just don’t call it a support group).

Sam

 

ps – Tomorrow night is the opening of the Art for Cancer Show at Toronto City Hall. For more information go to