For all Cancer Patients and their Supporters
11/17/2004 01:58 p.m.
A few friends on here have been wondering how I am, health-wise, and it touched me deeply. I don’t really know why they’re thinking of that but it’s sweet.

Thanks Chris Piccuolo and Glen Currier and the others. Maybe it’s because of my Dressed Up the Same poem, re my regular mammogram check. I don’t know. Or perhaps they’re psychic, because it’s true that in the fall, September to be precise, my oncologist (lymphologist) expressed concerns about my lymphoma showing signs of returning and wanted to do a biopsy. There was an enlargement in the abdomen, showing on my June cat scan, and some enlarged nodes under the armpit. Hey, it’s not glamorous or romantic, such findings, but worth sharing since so many fight lymphoma. But I felt well, and he didn’t push the biopsy at the time, instead decided on another cat scan in a few months, and closer checks, every two months instead of six now. Six month checks are standard for my well-check-ups but when there’s a suspicion, they tighten these up and also the cat scans. If the enlargement was worse, he’d have to start doing something about it. It’s very rare, he says, for my type of lymphoma to return after six years, but he’d have to keep an eye on things closely.

I was to wait from Sept to Nov not knowing, and with a son’s wedding coming up in May plus job interviews I like to try sometimes, I didn’t want to wait that long for results he’d have sooner. I must say he was very understanding and made an exception and let me know soon after he did, that there were no further changes, (although it would have been great if the enlargement had gone down, and it didn’t) and they can’t be sure nothing’s growing yet, and will keep monitoring. But it is possible it's just scar tissue from my illness six years ago, or something else, and the fact that it didn't increase is a great sign right now. He didn't talk about the armpits ones, but after feeling more places than ever, even under and around my face, jaw, etc, said everything seemed good.

I heard once of a terrible case of lymphoma of the face, in the states, and a woman who spent a fortune fighting that one.

He’s not my original lymphologist who got me through so splendidly, a Chinese-Canadian doctor whose wife is also an oncologist, but as I’ve gotten to know my current one, over the past few years, and especially after this kindness of sparing me and my family a long period of wondering (though to be honest, I don’t dwell on these things as I always felt so fortunate for any days post-cancer, and also felt cancer cheated me of enough time and energy, and I don’t give it much grace to take my time and spirit away) I really am happy with him.

But I did have to make the request. I write this having seen first-hand, and with my brother-in-law and read a lot of other articles about it, because cancer and potential cancer patients must remember to speak up and remind the medical world (who work so valiantly and hard and in the face of huge numbers) about the human element and need for information and choices along the way. We need care for that too. But it falls upon the patient and the families often to push, for less waiting for feedback, as well as for many of the matters in dealing with the disease, ie understanding that patients get fogged up post-chemo mentally a bit, (no-one had told me that when I went through it) and need as much help as possible as their families grow weary and stressed, re logistical things like prescriptions, appointments, balancing and remembering everything. A poet friend once told me, God gave you a tongue, use it! And you have to, speak up for yourself or have someone do it, don't be shy, as a patient, or too intimidated by the world of medics. Remind yourselves, and inadvertently them, that they wanted to be in this business because they care about people's well-being, and that means emotional too.

While I was waiting yesterday to see my lymphologist, a woman in a wheelchair was brought in by her husband to wait for her appointment. When the volunteer treated her so kindly, (it seems little things but not to us when we’re so weak) by not making her try to get up on her frail ankles to get weighed, as she’d been weighed that morning and remembered the numbers) the smile of gratitude on her thin aged-looked but obviously pretty and not old face, was so touching to me. I heard her whisper to her husband “she’s nice, isn’t she?”
She was only 96 lbs, and they were trying to figure it out in kilograms as that’s what the doctors like it in.

I remember being so relieved at times if I didn’t have to try to walk across the cancer centre waiting room or stand waiting while they processed my health card at the desk. I remember not wanting to leave my wheelchair, and one time, at my weakest, collapsing on the floor in their washroom alone, while there for a blood transfusion.

Living ghosts, is what we feel like when we’re that ill. Look like too.

I wanted to tell the patient, hey, as terrible as you feel, as hopeless as it may seem, don’t think it’s game over. I was there, I felt like you, and sometimes it works out. But I didn’t get a chance, they called me in, and of course some people who’ve looked to me as inspiration and believed they’d survive, are now doubting this more and more, and it makes me feel so weird. As my minister would say, the story isn’t written yet, we don’t have the ending, we don’t know.
But I know he’d say hope is always worthwhile.

Anyway, I waited in my blue hospital gown over 30 minutes in the examining room, wondered if somehow they’d forgotten me and started getting up and down from the table and
rustling magazines, to tell them I was there, as I’ve not had that long a wait in ages. You freeze in those gowns in those rooms! Then I thought, should I open that connecting door to the doctors’ section, and stick just my head out, while gowned, and ask if they forgot me? How do I get myself into these things, I asked as I swung my feet against the base of the table to announce I was there, not mad, but bored silly and wanting to be acknowledged. But eventually he came in and apologized. I know they have huge demands on their skills and time, and I’m a patient patient, usually, but was almost sure an error was made.

The good news is he’s moving me to every three months, checking, and a cat scan only in the spring, so I guess we’re in sound shape for Christmas and the wedding. I told him I felt great,
and when he asked if I was too tired to do my housework I wondered if he’d seen the state of my place. Oh, I have energy, I told him, but it seems to go to other things.

So as far as I know, I’m healthy. Never taking it for granted, never forgetting that each new day I’m not wrapped up in hospital life and gowns and appointments or therapies, or struggling to walk or breathe, is indeed a bonus blessing.

And I hope all who work with or know cancer patients, remember how priceless a moment of understanding and kindness, of sparing them that extra walk to get weighed, when their ankles are so thin and weak and the energy dissipated, is. And even a smile or a moment of empathy expressed over parking grief for the caregiver, or long waits, soothes so much.

Now to read about the Governor General’s Awards again, and to get into my cubby hole room and ready my Christmas paper and decorations.


I am currently Boisterous