Sunday, 26 February 2012

Living with cancer......

Just over a week has passed now since I found out that once again I am living with cancer. I don’t know if we are getting hardened to this constant battering or what, but this time around we seemed to come to terms with things much more quickly. It isn’t any easier, but we know what we are dealing with.

In recent days a new determination has been growing within. I feel determined to fight this; I’m just too damned busy and have too many plans to let this thing get the better of us. I need to continue with my running, keep the Achilles injury at bay and get fit so I’m ready for any future operations the hospital may want to do. I also intent to continue raising the profile of PMP and raise funds for the hospital. This has already started by the sale of the nest boxes I have been selling where orders are coming in thick and fast! So fast I can’t keep up at the moment!

I now intend to wait for the meeting at Basingstoke to find out exactly where I stand and get the answers to the many questions that are running around in my head. Then make some decisions.
Some time back Nancy; one of my regular supporters from the blog sent me a piece of writing that she created in which she talks about her feelings about being a teacher and living with cancer. Nancy is an English teacher who lives in Maine, USA and is a fellow PMP sufferer. Her ongoing support has been amazing and the piece of writing she has created paints a clear picture as to what life is like living with cancer and shows her amazing literary skills. I’ll let Nancy take over from here.........

I walk through my day in a silvery-gray fog, delivering lessons that seem to slip hollow off my tongue, chastising students who waver in front of me like ghosts, holding a stack of papers for endless minutes while I wonder in vain what it is that I should do with them. I smile, I gesticulate, I murmur encouragement, I remonstrate, I fill the role expected of me, yet the core of my being alternates between a cold, metallic shiver and a flushed warmth that rushes from my knees through the top of my head. As soon as the bell rings, I will get into my car and drive to the Cancer Center, where I will be told the results of the latest blood test and radiology reports. My eyes stray toward the ever-ticking clock.

Much has been written about the art of teaching, but little (beyond those pathos-filled teacher movies that I refuse to watch) has been said about how to negotiate between our teacher selves and our barenaked humanity when physical, emotional, and/or mental blows shake our lives.

In my case, it took a month of speculation, false diagnoses, a sequence of doctors, and fretful testing procedures before the “c” word finally was expelled into the open air: a month of writing lesson plans that seemed utterly redundant in the face of mortality, a month of maintaining my trademark teacherly style in the face of thoughtless words and behaviors, a month of going home and staring blankly at essays whose words swam before my eyes in undulating waves. As much as I tried, I could not disentangle the knot in my stomach or rationalize it into oblivion. But students expect consistency and department heads expect competency, so I kept a vague smile on my face and a purposeful spring in my step and hid my growing anxiety. Once I received the diagnosis of pseudomyxoma peritonei, I did not know how to think about this strange “orphan cancer” -- this “one in a million” shot of disease with the impossible name. I was healthy, fit, cool, hip, yet my abdomen was, apparently, slowly filling with mucus that threatened to kill me. How could this be? How could I not feel it?

During that month when nothing was known, when I was poked and prodded and tested and radiated, I went on a weekend retreat, spending much of my time away from sound, people, or conviviality. Instead, I sought the quiet of the earth, sinking into it with the trust and innocence of a child. One afternoon, I sat by a pond and watched as a brilliant autumn leaf rose languidly from the water’s dark, still depths. It took me a few minutes to realize that this was an illusion -- I had actually been watching the reflection of a falling leaf. Yet the moment when the reflection and the reality touched at the water’s surface shook me with its beauty. Later that week, while teaching a lesson on sonnets, I wrote the following poem; however, I was unable to complete the final lines until a year later:

Within the dark tempest of worldly care,
I seek a place where fear cannot entice
my wavering spirit to turn frail hope to ice,
but where hope can find shelter from bleak despair.

Can solace be found in a lover's embrace,
or in starry midnight's heavenly sphere,
in a baby's breath – so sweet, so near—
a cocoon within life's chaotic race?

A leaf, reflected in a slate grey pond
rises, anxious to meet its mirrored form;
likewise, here on shore, I reach, forlorn
to the light-filled aether that lies beyond.

Will I touch the bound’ry between life and death
With unwavering eyes and unbated breath?

By the time the accurate diagnosis was made, the medical conveyor belt had bruised and demoralized me. I had discovered that many doctors only look for what they want to see and ignore the rest; those same doctors look at the body as an amalgamation of spare, expendable parts. Finally, through the concatenation of a backed-up CT scanner, a car accident, and a snow storm, I encountered the radiologist who, after I had melted down in tears of frustration, took the time to look me in the eye, find out who and what I was, tell me what was needful, tell me what was not needful, and, incidentally, correctly diagnose my illness. There, on the gurney, the closeness of death became real and the teaching implications burst into my consciousness and out my clamped teeth. “What do I tell my students?” I wept. That year, my classes included an inordinate number of students who had suffered the deaths of parents, the abandonment of loved ones. How could I negotiate my possibly tragic reality with grace, honesty, and compassion such that they would not be hurt further?

And that really was the answer: grace honesty, and compassion. For my students, I needed to model the reality of death, as well as the imperfect manner in which we frail human beings approach this experience. I took my love for my students and used it to rise above my fear.

My surgeon wanted to operate right away. I negotiated -- I needed to host Poetry Out Loud, finish the semester, and create a smooth transition for my students. She gave me two weeks. The whirlwind of lesson planning, final exams, and grading filled every available moment. I had no time to think about my operation, one that I discovered later is “affectionately” -- and fittingly -- called MOAS, the Mother Of All Surgeries. One day I was flitting about my classroom, the next IVs were being stuck in my wrists and I was being whisked into the cold operating room.

The rest is still difficult to talk about: the NG tubes, the endless nights of staring at clock-hands that never moved, the hours of watching birds fly on the updrafts in the gray winter sky, the deceptive healing, the demoralizing setbacks. I had no words; I had no brain. Every ounce of energy went to knitting my torn, burned body back together. One afternoon, as the sun streamed through the window and my husband snored softly on a cot nearby, I looked at the clock: 1:00. 4th Block AP Lit. They were in my classroom, and I was not. For the first time since I had entered the hospital, I sobbed uncontrollably. A nurse, peeking in from the hallway, rushed in.
“What is the matter?”
“I miss my students,” I wailed.
She looked at me, arms akimbo. “No,” she said. My husband’s a teacher.
That can’t be it.”
I assured her that, yes, that was it.

By the third week, I had gone through two surgeries. All the trashy novels, journals, crosswords, craft kits, and candy -- yes, candy -- that my well-meaning colleagues had sent lay unopened, like relics from an alien planet. I could not focus on anything more demanding than old Law & Order reruns, and even then, I lost interest after about ten minutes. I could not digest anything; the few popsicles that had tasted like ambrosia earlier during my stay were now off limits. All I could do was wait for my digestion to kick in. Each day, the surgical team entered my room with hopeful eyes. Each day I told them, no, the plumbing was not yet working. After days of this, one doctor asked if I’d “turned the corner yet,” to which I replied wearily, “What does the corner look like? Just tell me what it looks like.” I began to retreat into silence, like a wounded animal that crawls under the porch into the farthest, darkest corner.

Then one morning as I, once again, turned my gaze to the window to watch the dawning sun color the wisps of clouds, I heard a student’s voice reciting the poems that he had performed at Poetry Out Loud. Longfellow’s line “Tell me not in mournful numbers” morphed into the final words of N. Scott Momaday’s “The Delight Song of Tsoai-talee.” “I am alive!” I heard Caleb say: “I am alive!”
And, suddenly, I was.

I returned to my Block 4 AP Lit class a few weeks later, bent, gaunt, and walking with a cane. I struggled to catch my breath as I spoke feverishly about Hamlet’s third act, trying, in one hour, to fill in all the Block 4s that I had missed. When my brain fog obliterated the right name, the correct word, my students waited patiently, politely refraining from comment. I inhaled their energy and embraced their carefree joy.

I did not return full time until a full quarter had passed. A full quarter -- how ironic from the woman who in the past five years had never taken a sick day except when her daughter had given birth. But I returned cleansed, reborn, filled with wisdom--Tiresias come back from the dead, Columbus discovering a new paradise--every day, every moment, every breath a paean to life. But tired . . . so very tired. I had limited energy to deal with all the irritations, agitations, and frustrations of the classroom, so I just smiled wearily and looked away. Somehow, peace prevailed. I learned to deal with my foggy synapses by searching for synonyms in mid-sentence: if I couldn’t remember the word “dissemble,” just plain “lie” would do as well. Making the trek to the copy room for the first time filled me with as much pride as if I’d struggled up Everest. In the hallways, I was the car in the slow lane, holding back a growing clot of surprisingly patient teenagers. Thursdays were the most difficult, and my husband would come home to find me curled up in my green recliner, clutching a pillow against my tender abdomen. But somehow I craved that feeling of soreness; the discomfort proved that I was alive.

Later that spring, I had the opportunity to return to the cancer ward. I did not linger. Back in Creative Writing class, I scribbled the following:Outside, birds ride on the shoulder of the wind; their shadows pass behind the shades. I walk the cancer ward, watching death coil against the window glass, seep beneath the linoleum tiles, and dance amidst the custodians' carts. My invisible phantom, IV stick in hand, NG tube rattling, looks up in consternation. “Go back! Go back!” she cries, before melting into a watery path that shimmers along the sterile floor. In a nearby room, a nurse glances at me, her eyes briefly interrogating my presence. White sheets snap through the still air and settle with a soft exhalation of breath as she smooths them with a practiced hand -- white sheets that have been stained with my fear and blanched with my hope. I offered my broken, charred body as an acceptable sacrifice, and I now stand erect, healed, reborn. I do not belong here. Yet, even as I walk through the corridor, down the stairs, and out the huge glass doors, a wraith continues to twine itself about my heart, drifting like smoke from a dying flame.

Cancer remains a constant companion: most days, it remains pushed to the recesses of my mind, but the knowledge of its presence never completely disappears. I now cling to the world that a year ago seemed an undeserved gift, and it is in the clinging that the wraith returns. The euphoria that filled me for months after I “turned the corner” has dissipated, but the aching beauty of the world can still stop me in my tracks. And this beauty is what I attempt to bring to my students -- the knowledge that touching death is not terrifying -- fearful, yes, but also imbued with moments that fill your emptiness with joy past imagining. The memory of the soft sounds of my husband keeping vigil, the echoes of psalmists and poets, the streaks of light that creep across the sky every morning -- all these keep the wraith at bay. And there is more -- so much more. The touch of my grandchildren’s hands across my cheek, the gilded shadows as I walk to school, the sound of a river rushing over stones, the eyes of my students rapt in the light of knowledge: all these are reminders of the creation that is ours to discover and re-discover every moment of our all-too-short lives.

Nancy Kane- A fellow PMP sufferer,supporter and friend.

Friday, 17 February 2012

The PMP Hammer Falls Again......

I had a call late yesterday afternoon from Sue Alves, the specialist nurse at Basingstoke Hospital.
Not good news I’m afraid.

A small area of mucous was detected the size of a one pence piece on my bowel at the back of the abdomen.

The plan at the moment is to meet with my consultant; Tom Cecil and Sue at the PMP clinic in a few weeks time. Here we can discuss and understand in more detail what the implications are and what types of treatment may be on offer. Early discussion suggest that it is possibly operable (although any operation will be harder the second time around) or Chemotherapy. But until I have spoken with them in detail I don’t know the specifics.

The plan is to wait now for another CT scan in six months time so we can get an idea of how quickly this thing is growing and take things from there.

I took the call at 16:45 last night and decided to wait until I got home to break the news to Tracey and the girls; do it face to face. I dreaded it all the way home as I knew just how upset Tracey would be.

It was just as I imagined and no different from the first time around. Tracey was devastated and very upset. We told the girls as they knew something was going on and as has always been the case we wanted to be truthful and honest with them so they didn’t worry themselves.
Next I had to break the news to Mum and Dad. I knew how much this would upset them, they have been through so much what with dealing with Mum’s breast cancer after my MOAS the first time around.

My biggest worry is just how well my family will cope second time around. Tracey and the girls, Mum and Dad. Part of me thinks that at least we know more about what we are dealing with, we know what type of things we can expect, we know the team looking after me and we know the facilities at the hospital......

But I also know that second time around things become more complicated and are not easy to deal with.

We just have to watch and wait now and try and crack on the best we can.

The PMP Albatross weighs heavy again.......

Monday, 6 February 2012

Annual scan and 2year anniversary of my MOAS....

Last week was a busy week .......
Monday was the scheduled date for my 2nd annual CT scan at Basingstoke and North Hampshire hospital. We made the usual drive to Basingstoke after a relatively early start. The weather conditions were not great and there was snow on the ground in Bristol and it was still snowing a little. However by the time we had passed Swindon this seemed to disappear and gave way to cold winter sunshine.

We arrived early at the hospital and headed straight for the CT scanning department. My appointment was not until 13:15 but we were hopeful that we could be seen before then. Luckily this was the case and I was soon issued with my Barium drink after some frantic calls to my local GP who had not sent the egfr blood test results through to the CT department as requested.

We then headed down to the bloods clinic for bloods to be taken and then back to the CT scanning department. Whilst waiting we got chatting from a couple from Norfolk (John & Dinah). As it turns out John was a fellow PMP patient who had undergone his surgery only a couple of weeks before me and left a day or two before I arrived. They both knew a couple of the fellow PMPers that we had become friendly with whist at the hospital (Paul & Ann and Margaret, if you are reading John and Dinah send their best regards!) and we had a good old chat.

Soon my name was called and the usual routine kicked in. I got changed into my gown, went through to the next cubicle to get the cannula fitted before finally heading through to the scanner. The whole process was soon done and I was back getting changed into my civvies and looking forward to a bite to eat!

We stopped in the canteen for something to eat and a coffee before heading back down the M4 to Bristol. Unfortunately time had run away from us and we did not have time to stop at C2 and say hello as we had to be back to meet the girls when they arrived home from School.

So now the nail biting has kicked in, I have spun the PMP wheel of fortune and await those all important CT results. If I haven’t heard anything by Wednesday then I’ll give them a ring....

Then on Thursday 2nd of February it was the 2nd anniversary of my MOAS. It’s hard to believe that two years ago now I faced such major surgery. It’s true what they say, some of the memories are starting to fade a little whereas others are still very much burned into my mind. I have to give thanks that thus far I have been well and that I have been very lucky when compared to other patients I know.

I have continued to keep myself busy and continue to raise funds for the hospital over the last few weeks I have been making up bird nest boxes and selling them locally. 100% of the proceeds are being donated to the hospital as the materials have been donated to me. I have had several orders that will now keep me busy at the weekend for the next few weeks and will kick start the fundraising for this year!