Ride For Dad

My husband and two of his friends are participating in the motorcycle ride for New Brunswick to raise funds for prostate cancer research. 

They'll have fun today and perhaps a bit of wet weather, all for a good cause.  One of his friends raised over $1600. to contribute to the campaign.  Congratulations Bob.

Have fun riding with all the others from around the province and may the rain hold off until you are each back home.

On the Right Track

 

 

On the Right Track

 

Writing is hard, harder than usual.

 

Most of the time, my mind composes lines of poetry and creates fragments of stories no matter what else is happening around me.  I carry a small notepad and a pencil everywhere I go, to capture thoughts, observations, conversations and phrases.  At home, notebooks and pens lie scattered, ready for words.  Most of the time, my mind flows with writing.

But writing is harder than usual because I’ve been ill, had surgery, radiation and an accompanying depression.  These new and nasty experiences are behind me now.  Yet they remain close enough to influence how well my mind works.

This “how well” part isn’t working so well.  I loathe feeling so slow and so stupid, like swimming blind through a river of slush.  My clarity is improving but at the pace of an icicle melting in winter.  I attempt to write each day; the output comes in drips.

To journey through recovery is to wander in a fog of weariness where thoughts and images flicker at a distance, indistinct and muffled.  I reach for them and they retreat.  I can’t bring them to the page.  Some days the fog smothers my way and I am lost.  I can’t write a thing.

I’m told this is normal.  Gosh!  It's not comforting.  I’m finished my treatments, done with the meds and I want to be well.   What my mind wants doesn’t matter; what my body wants does.

I am weary.  I rest.  I sleep.  I am awake and energetic in short bursts, then I am weary again.  Am I improving?  Yes.  Are there longer periods of energy?  Yes.  Will I return to myself?  Yes…eventually.  I am on the right track.

I am grateful for early diagnosis, for medical care, for survival.  I am thankful for moments when mind-fuddle clears, when I can write, when I glimpse feeling at home within myself.

But, I’ll be delighted as a four-year old in new rubber boots on the first puddle-filled day of spring when my mind sheds this fog and this weariness.

Until I can embrace my writing with all of myself, with every bit of myself...until then, I am on the right track...frustration on one side and patience on the other.

 

Words and photo are copyright © Carol Steel.

 

A Good Question

 

A Good Question

Enduring an encounter with serious illness and the possibility of death tested all my significant relationships.

Who was there for me through the months of illness?  Who suffered with me?  Who was really affected by the possibility that I might not return to health?

To whom did I really matter?

Answers were not easy to find, for people had different ways of showing they cared.

I acknowledged how difficult it was for friends and family.  I appreciated that they did what they could.  There were many who backed off and I was hurt and disappointed.  Some relationships I valued didn’t turn out to be the way I thought they were.  It wasn’t that people did not care; it was more likely they just didn’t know what to do or say. 

People helped and supported the best they could; sometimes they didn’t know how to do this.  Perhaps they thought ignoring what happened and trying to move on was best for everyone.

My own expectations were sources of disappointment.  When I felt tired, vulnerable and scared, the withdrawal of others from me did not help me.  It was as though I had contracted a shameful, contagious disease.  It hurt and yet I understood.

Thankfully, there were many who stayed in contact through cards, notes, emails and phone calls, dropped off meals, sent small gifts or flowers, made short but loving visits, listened and found ways to show that I mattered to them.

For them I was grateful.

Significant relationships were not all constant.  Many changed.

To whom did I really matter?

A good question.  A greater lesson. 

Finding Truth

 

 

Finding Truth

Experiencing cancer took me into a time both strange and scary.  Before I knew my exact diagnosis from my surgery results, I faced the reality of having an illness that might kill me.

I have been lucky.  My apprehension of the illness, my experience of pain and my endurance of radiation treatments are all behind me now.  I have been lucky.  The surgery removed the malignancy; the radiation gave assurance against recurrence.

While I was in the midst of this, I recognized the insignificance my everyday concerns and worries.   I recognized a need within myself to refocus my energies, to pay attention to what nourished my essential being, to avoid that which drained and diminished me.

The illness made inner wisdom easier to hear, as my world shrank, as I conserved strength and tended to my own health.  I recognized that when I am well, I tend to say “Yes” to requests to help, to organize, to participate.  I find it difficult, nearly impossible to say “No.”  My compassion, my need to be needed, my guilt, my desire to be unselfish propel me to share in activities which seem to require only a contribution of time and a bit of energy.  The truth is more often that these involvements take far more time and energy than advertised.

I know this and yet, again and again I allow some unwise part of myself to whisper “Yes,” even though I know that I give time and energy to tasks, to people, to relationships that deplete me.  I cling out of guilt or an assumption that I am responsible for the job, the person or the relationship, that I must take on the burdens or the choices of others, that I am essential.

One of my oncology nurses told me that no one is irreplaceable.  We are each like a finger dipped in water.  When the finger is withdrawn, the water resumes its shape with no trace of where the finger once was.  Truth and wisdom.

I am at home recovering, still tiring easily and needing all the energy I have to help myself heal and gain strength.

I have clarity about what is right for me and what is wrong for me.  I am re-learning to value my inner wisdom, to trust my perceptions, to count on myself.  And I am learning to say “No” to situations that I previously acquiesced to out of my need to be liked, to conform, to be valued or out of a fear of reaction from others.  I am learning to say “No” to what is wrong for me or is the wrong timing for me.

Surviving, becoming healthy are my priorities. 

I trust these lessons will echo through the rest of my life helping me to stay on my pathway, to discern the wisest choices and the best uses of “Yes” and “No,” to find my truth.

I've Been Away

 

 

I've Been Away

I've been away from my blog and from my writing.

I am here now, yet I am not here--not fully.

My body feels like an alien creature, weary, uncooperative, aching from radiation burns.  It has turned on me, betrayed me with these cancer cells.  Still this body is mine.  I recognize myself in the mirror; my face, my fingers, my feet, my self.

Yet I am not here--not quite.  I struggle through the brain fog.  Is it Friday?  What happened to Thursday?  Will I write today?  Can I make sense?  Will I write and re-write only to quit in despair?

Depression and I have become well acquainted, more so on the days when pain and frustration are close companions.  I sleep 11 hours a night and nap during the day.  If I want to do dishes, or bake biscuits, sweep a floor or have a shower, I must do this in the morning before the energy dissipates.

It has been hard learning to be gentle and patient with myself.  Even though treatments ended last Wednesday, it will be weeks more before energy returns and the burns are healed.  I am recovering but want the process to speed up, to be done.  I want to be well...now, now, now.

This winter, I have been hibernating in the caverns of radiotherapy and sleep, caught in a haze of  depression and pain and medications.  But I am returning to myself, to clarity, to lucidity, to balance.  The "not here" times lessen as the "here" times lengthen.

I will be well again.

I am nearly there, back to "here", back to being fully present within myself.


Words and photo are copyright Carol Steel.  The photo is of the recent full moon through a haze of cloud and darkness.

Perspective

 

 

 

Perspective

I had an appointment for today at 2pm to consult with the oncologist…finally.  It should have happened two weeks ago but they “lost my paperwork.”  Today at 1:30 pm I received a phone call postponing the appointment until tomorrow morning.  “Sorry for the last minute cancellation,” she said.

I asked about whether they were doing the markings and set up tomorrow too.   “Oh no,” she said, “that will be sometime next week, if we can find a slot for you.”

 “Oh and then I’ll begin the radiation?”

“Well no, then we’ll have to see when we can fit you in to begin sometime in the next month.” 

I wondered why, and felt a little sorry for myself; sorry that obtaining treatment would take so long and be so vaguely planned.

Then I remembered.

I have a home, un-burnt and un-flooded.  I have electricity and heat.   I can do laundry and can drive where I want to go.  I don’t have two hundred year old Black Oaks falling on my roof while I wait over a month for a tree company with a crane to come and cut them down.   I have fresh food.  I don’t have to worry about the temperature dropping outside and my pipes freezing.   I have Medicare which will pay for all or most of my treatments, whenever they happen.

I’m a lucky woman.

It helps to keep the problems in perspective. 

Photo and words are copyright © Carol Steel



When Someone Has Cancer

When Someone Tells You They Have Cancer

“I have cancer.”

“What?”

“I have cancer” she said, as I watched her cut and pat and butter the dough she was making into rolls.

“I’m sorry, so sorry to hear that you are going through this.  What can I do to help you?”

“Nothing,” she said, “I don’t know what I’ll need.”

“I love you and will be here for you, whatever happens.”

“Thanks but I don’t know what the future will bring and I don’t know why this is happening to me.  I don’t know why God is punishing me…I’ve lived a good life.  I’m a good person.”

Now, facing cancer myself, I remember this scene in my grandmother’s kitchen.  I remember I was horrified that my Grandmother believed in a God, who would punish her with cancer.  I felt sorry she carried that strange belief, adding to her agony and worry over the disease.  And I don’t remember what I said to her to comfort her.

I hope I told her that I loved her, that she was important to me and that I would be there for her.  I hope I hugged her.  I hope she knew how much I loved her. 

Now, I know how it is...to tell someone, “I have cancer.”  And I have learned hard lessons about how difficult it is, for people who love me, to hear those words.  I have empathy with their sense of shock and worry and grief.   It isn’t easy to know what to say or do because everyone reacts differently and everyone copes differently.

Because of this universal discomfort with talking about cancer and because I have cancer, I feel the need to offer suggestions from my own experiences. 

So, in the hope of shedding light and offering support to those with cancer and to those who love them, here are my responses to the dilemma of what to say or do when someone you care for has cancer.

First, if you don’t know what to say or do, don’t be hard on yourself…it’s a common reaction and a human one.  Acknowledging that the news is difficult for you to hear is better than saying nothing at all.  Saying you don’t know what to do to help is OK too.  The person with cancer doesn’t always know what they need either.

If you can say, “I’m sorry” or “I care about you” or “I’ll help when you need a drive or a meal or a listening ear,” those comments are supportive. 

Don’t worry so much about saying the wrong thing.  Take your cues from the person with cancer.   They may need to talk, or to be quiet within themselves;  they are processing all of this new information, just like you are.

Avoid telling them stories about everyone you know who had cancer and died; do I need to explain why? 

Share positive stories.  Talk about normal everyday life; cancer doesn’t need to be the topic of every conversation. 

Respect their need to not talk some times.  Talking about it out loud makes it very real; makes it frightening.   They'll let you know when they need to discuss what is happening.   Be open to possibilities.

If you want to bring a gift, make sure it is something they want or can use.  Do they have allergies?  Are they having problems with nausea?  Do their cats eat flowers?  Do they like music?  Do they love chocolate?  Are they well enough to make their own meals?  Is there something they need but can’t get out to purchase?  Is there something totally impractical they would love to have?  Would they like to share a bottle of wine, and whine?  And, you don’t have to bring gifts.  Often just being with them is all they need. Yes, just you, really...you are gift enough.

Avoid saying things like:  “Well, you have large breasts anyway, so a chunk missing doesn’t matter.”  It matters, it matters a hell of a lot.  When a surgeon takes ice-cream scoop size portions of tissue from your body, it matters.  Think about it.  It isn't about breast size.  This presents a whole new set of challenges for the person with cancer.  Don't make them feel like they're wallowing in vanity when they are mourning the loss of parts of themselves.

Give hugs, but gently.  Surgery takes time to heal and incisions are often sore for a long period.  For the person with cancer, touch helps.  They are feeling isolated enough already and need all the comforting they can get.

Listen to them.  Let them talk about what the cancer is like for them.  If they cry, that’s OK.  You can cry too if you want.  The situation sucks and crying is an appropriate reaction.  Crying relieves stress. 

Remember to laugh with them too.

Don’t give unsolicited advice about how many pain pills they are taking.  It’s their pain, not yours.  The doctor knows what is happening and is supervising.

If the situation is effing awful, acknowledge that.  You saying, “Wow, that’s horrible!” may be a relief.  You can’t say anything that the person with cancer hasn’t already thought themselves.  Sometimes, it’s a relief to have the situation recognized and named.

Remind them to rest.  This situation is new to them and they may not realize how much the treatments and the stress are wearing on them.  They are struggling to find their way through this journey.

Send email messages or leave phone messages to let them know you are thinking of them.  They may not have the energy for visits or for long phone conversations.  Let them tell you what works best.  If you do visit, call first to see if they're feeling well enough for a visit.

Listen and pay attention to them.  Be patient.

Don’t say, “Cheer up, don’t think about it.”  They can’t stop thinking about it.  Let the person with cancer guide you in what is helpful to them.  Each person responds to their diagnosis differently. 

There is a fine line between giving people space and privacy and protecting yourself from becoming emotionally involved.  Some cannot and some don’t offer support; recognize what you can and cannot do.  Be gentle with yourself.  It doesn’t help the person with cancer if you force yourself to be there for them.  They’ll know the difference.  Again, be gentle with yourself in this situation.  We are all different.

Avoid saying: “I’ve read that women who are overweight are predisposed to breast cancer.”  Where do I begin?  This isn’t helpful; there are other factors involved like genetics and environment.  This blames the person for their disease and sounds like, “Well, you’re fat, so you deserve this.”  It is a nasty comment and you're an asshole, if you say such things.

Last, if the person with cancer is used to being independent, it may be excruciating for them to have to ask for help.  Keep offering and reassure them that you don’t mind helping, as long as you don’t.  If you do mind, it's OK; be truthful.  People who are dealing with serious illness appreciate the truth.

That’s all for now; if I think of anything else, I’ll write more another day.  I hope this helps you to understand and to be gentle with the person who has cancer, as well as to be gentle with your own reactions.

Oh!  And remember, breast cancer treatments have come a long way since my grandmother had cancer.  The sensitivity of the medical system has improved.  The modern equipment and the technology are able to diagnose and to treat cancer more effectively.  It is not the death sentence it once was, in my grandmother's time.

There is hope and there is life.  Every day, there is hope and there is life.

I choose life and I choose to share my own journey.

Yes, I have cancer but cancer doesn't have me.

Photo and words are © copyright Carol Steel.

Gratitude

Gratitude is so close to the bone of life,

pure and true, that it instantly stops the

rational mind, and all its planning

and plotting.

~Regina Sara Ryan

From Praying Dangerously

This is the quote for today from http://www.gratefulness.org/

Reading it made me stop all the "To Do" lists in my head. 

I recognize that the "planning and plotting" are of no importance, beside the fact that my mother and younger sister each received great reports from their doctors this week. 

The alternative to great reports could have been a diagnosis of breast cancer, a very real and ever present worry in this family's genetic make-up.

They are lucky, the whole family is lucky and I am so grateful.

Stop a minute. 

What has happened to you this week that caused you to feel gratitude?  For what are you grateful?