On the Loss of a Cancer Blogger – guest post

Since I began this blog, I have always wrestled with the question of how to handle Guest Posts of survivors that are not doing well.  Early on I even considered whether or not to publish the names and URL’s of blogs of folks that have passed away.  Last Wednesday I offered the difficult post by Alli, who was struggling with the inevitable issue of quality vs quantity of the time left us when our disease rises up and begins to beat down our last defenses.

Now that I am working in a bone marrow transplant clinic and proudly wear my leukemia and transplant badges in order to give my patients hope, the editorial conflict is more acute.  I frequently had out Being Cancer Network business cards to my patients.

But after all Death is what we fear when we first heard our doctor say the word “cancer”.  Death is what we begin preparing for, at least at some semi-conscious level, in the days, weeks, and months after our diagnosis.  Most of us are familiar with the statistics of our particular disease.  Those statistics tell us that there are some that do not make it.  This fact comes as no surprise.  We only hope to not be included in those grimmer numbers.

There are lessons to be learned from every story of cancer, lessons to be learned from every stage and phase of our struggles.  In fact that is our reason for publishing Guest Posts in the first place.  Some lessons are dearer than others to learn.  Some posts are harder than others to read.  The author of the following post admits that.

One could argue that there is nothing noble in suffering, that there is little to admire in death.  And yet that is part of the transcendent nature of human experience – that meaning can be derived from both.  It is even popular to think that this is the special nature of dealing with those diseases called cancer.

Marjorie Walker has been writing as the Cancer Curmudgeon · Can your blog save your life? since November 2009.  She wrote the following post on July 1 of this year.  One week later the following was posted:

Marjorie Walker
22nd December 1938 – 8th July 2011

Marjorie passed away peacefully on Friday 8th July.

Margie was a psycho therapist.  Throughout her blogging career she thought a lot about illness, disease, death and dying with dignity. It is certainly worthwhile to peruse the archives of her writings.  You will also notice that her blog did not end that July 8th.  It continued on in memorial tributes by friends.

The learning from our life can continue on after our life, expanding to others who may be struggling still.  This is why we continue to publish at Being Cancer Network.  Marjorie’s thoughtful writing is a testament to the power of cancer blogging.

Take care, Dennis

I have moments, particularly in the middle of the night, when I’m frightened of dying.  Every week I get a little weaker, and I’m frightened, it would be churlish not to fear death.  I’ve studied how people react to and suppress such phobias, but in the end it doesn’t help very much.  I understand why people repress their fears, why they invent amazing stories of heaven and hell, and why they sacrifice chickens in order to project their fears.  I certainly had enough analysis to have some understanding of all that.

Am I afraid of being alone at the moment of death?  Of course I am, but then again not really; most of the things that have happened to me, the traumatic and life-changing experiences, have happened to me while I was more or less alone. Being a single woman forces you to face things alone a lot.

I often think I might stop breathing tonight, or tomorrow night. I’m very conscious that things are getting worse every week, but I’m also conscious that the days are good, and I don’t want to die yet.  There are certain friends I haven’t seen enough of, even now.  I said I would write 100 blogs, and I’ve nearly got there … wouldn’t it be amazing if I got it right on the mark?

Plans are being made still: I’m getting more equipment; my room becomes more and more like a hospital; more carers are here to help.  I’m frustrated by how little I can do for myself, but I don’t wish I was dead; I still want that extra day, or that extra week, or that extra month.

The physical space I live in is getting smaller and smaller, and once the hospital bed arrives I’ll be finished.  My activities are not what they used to be – I read less, I watch more junk television.  But what does it matter, if I see my friends, once, twice, maybe 3 times a day?  And I still enjoy my food – perhaps not like before, but I know what tastes good.  And I have so much work to do still.  Work on my finances (boring), work on my family (emotionally testing), and things, the right things, to give away to the right people (tricky).

Two weeks have passed since the above was written.  I lie now in my hospital bed, waited on hand and foot, 24 hours.  We’ve gone through the commode stage and beyond, and now I have a catheter, so no more falling over on the way to bathroom.  I’m now bedridden, but I have to tell you it’s not as bad as I thought it might be; I’m not finished yet.  Stage by stage as I deteriorate, I still find pleasure in small things – even if it’s just feeling fresh after a bed bath.  I look forward to my meals – that hasn’t changed – and to visits from friends and family.

I wouldn’t have believed four months ago that my body would deteriorate so far, so fast, but the months have gone very quickly; and the down and down has been clear to chart, step by step.  But I can still, just about, engage with people , thanks to drugs.  I never thought I would ever take, much less need, so much morphine, which now I welcome, drug addict that I am.

I’m shocked; the door is closing rapidly.  My oncologist just left and she is very saddened by my condition and the fact that on one occasion I’d been left in pain – it’s only been one night, no maybe two actually, but they were horrible times, mistakes were made or it wouldn’t have happened.  I’m now on double the pain medication and hopefully will never have this problem again. I feel like I’m waiting for pain to come, but I hope that all my doctors are right and that I’ll never get that pain again, but that takes a lot of trust when once the system has gone wrong.  There’s a lot of wishful thinking, and trust, that goes into this.  I’m going to do the best I can to believe it.

What is the worst pain?  The psychological pain or the physical?  That’s a difficult shot to call.  When you’re sitting and watching the deterioration of your own body, it is an excruciating psychic experience, even when the drugs eliminate the pain.

Let’s look at how things have changed:  from having friends over for dinner, and going out together, and the theatre and all that, look at how much time I spend asleep now.  Last year my oncologist and I went out and had a lovely dinner at a restaurant I couldn’t possibly remember the name of now – couldn’t think of going there, let alone walking there now. I struggle to write this blog, with my friend Antonia.  I can’t think very well because of the morphine, but I don’t mind, I must get rid of the pain.

I know this will be a tough blog for people to read, but I think it’s important for you to know the truth.  Maybe this is the war on cancer people talk about, more hopeless than the Afghanistan war, no exit strategy.  It’s impossible to believe, you can’t believe in your own death. The idea of your own death is very difficult to get your head around, I can tell you.  It’s tough to live through, and it’s tough to think about and write about, and at the end of the day it’s very scary; but it’s even tougher on your friends and family and those around you every day.

~ from Cancer Curmudgeon · Can your blog save your life?

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

On the Loss of a Cancer Blogger – guest post — 1 Comment

  1. I hope that you are able to post 100 blogs! That is a goal that I should make for myself as a new blogger. I have just created a blog at blogger.com about my father’s battle with cancer. Reading how you felt really makes me think about how my dad must have been feeling in the last two years of his life while he was fighting for his life. One of the hardest things in life, if not the hardest, is facing your own death, as well as facing the death of loved ones. Death is a scary thing, but we all have to go through it sooner or later. However, having people there for you during hard times is crucial because feeling alone makes every situation worse. Make the most of the time that is left, and cherish every moment.
    Best wishes,
    Trish D.

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