June 21, 2006

• Cancergirls

  Fear not! Most of this entry is pretty upbeat, or at least helpful, I hope.

  A few of my friends around these Xangaparts either have cancer
  themselves or are caring for someone with cancer. I thought I’d write a
  bit about this today, since I find myself thinking it over from time
  to time as I comment on other blogs.
  
   Being a cancer patient

  I can talk about this because I have had cancer and survived it — for
  16 years so far. Most doctors will never tell you that you are cured, of
  course. Once you have it, you have it, and that’s that. However, I am
  sure that it is gone for good.

  I’ll spare you the irrelevant details unless you decide to click here.
  (No pregnancy was involved.) It was unresponsive to chemotherapy, and
  an eventual complete hysterectomy got it before it could spread. Lucky
  for me. But I went through months of hell. I became an
  expert hospital patient. At one point I sat in a doctor’s office as she
  matter-of-factly gave me, 25 years old at that time, 4-8 months to
  live. So if you have cancer, I know what you are going through.

  I reproduce here an anonymous “patient’s pledge” which I feel should be
  contemplated by every cancer patient. You need to stand up for yourself
  strongly as a patient, and you also need a “second” who attends all
  your appointments and is privy to your thoughts and decisions, and who
  can advocate for you if you should be unable to do it for yourself.
  
  
  The Patient’s Pledge
  

  • I will be heard.
  • I will not be intimidated.
  • I will listen to my body: my symptoms matter.
  • I will be fully informed, and included in the final decision.
  • I will have the best care.
  • I am entitled to hope.
  • I am entitled to compassion and to be treated with dignity.
  • I will stand up for my own best interests.
  • I will praise good care and report bad care.
  • I will be safe.

   Caring for a cancer patient

  I can discuss this because I had a lovely friend who succumbed to
  inflammatory breast cancer in 2001. She’s gone, but in many ways her
  story continues and is inspirational. Also, she taught me a great deal
  about caring for people with cancer, although I was a difficult student.

  Menya was clever and devious
  and creative and irreverent and cynical and idealistic and fun. She
  managed to stay alive with IBC for about five years, which is somewhat
  miraculous. She and her husband started an Internet resource for people with that illness, which continues to help people to cope and to survive longer.

  Menya decided she’d like to die at home, and a local hospice organized
  nurses, volunteers, friends, and family to try to make this happen.
  While a member of this team, I contemplated the difference between a
  “friend” and a “caregiver” — you have to give up, to some extent, your
  previous relationship with a person in order to nurse them. But in
  taking on some of the caregiving burden, we were giving Menya’s husband
  the chance to be simply her spouse, and that meant a great deal to both
  of them during her last months. After Menya died, her dad wrote a book
  about those last months, very useful to those who want to learn about
  the hospice experience.

  I discovered things I didn’t like about myself, such as that I am by no
  means a “natural nurse” (unlike my mom), and that I can fall prey to a
  terrible loss of morale. In part, I didn’t give my all to it because I
  was preoccupied by unrelated personal stuff, but naturally I
  now regret everything I was too afraid or upset to do for my friend. I
  console myself that she understood how much I cared, despite my
  obvious shortcomings.

  For caregivers, I reproduce from the IBC website a list of instructions
  on how to care for yourself so that you will remain capable of helping the sick person.
  

  • Take time to care for yourself. Follow the
    Golden Rule for caregivers: do unto yourself as carefully and as kindly
    as you do unto your patient.
  • Try to emphasize “I would like to…” instead of
    acting always according to “I should…” and “I have to…”
  • Realize that at times it is normal to feel
    helpless and frustrated, and that such feelings should not make you
    feel guilty or ashamed.
  • Be able to say “no” as well as “yes.”
  • Believe it is more effective to change the way you
    behave with others rather than trying to change their behaviour and
    reactions to you.
  • Have at least one special person to turn to as a source of support, reassurance and direction.
  • Be able to accept as well as give support, encouragement and praise.
  • Have a “quiet place” where you can enjoy a special
    interest – reading, music, gardening, sewing, etc. Make use of it
    regularly because you deserve time off, and you need to rally your own
    emotional energy.
  • Believe that caring and just “being there” are sometimes more important than doing.
  • Even though a person you love is seriously ill,
    laughter and play are part of being alive; try to make them a part of
    the patient’s life, and yours.
  • Find positive ways to deal with feelings of anger, frustration and grief.
  • At the end of each evening, go over
    the experiences of the day and find at least one good moment.

  I thought I’d end by posting a funny photo that I shared a couple of
  years ago. It shows a much younger me with a group of friends, stuck in
  an elevator during a funny New Year’s Eve costume party. Menya is the
  angelic one in the middle, with the halo. Her name tag reads, “Hello.
  My name is Archangel Muriel.” I will always have a place in my heart
  for the Archangel Muriel and all that she stands for.

  

  • 5:48 pm
  • 27 Comments