When Survivorship hits the wall…

Let me preface this post by saying that yesterday was not a fun day for me…not the kind I strive for, full of fun and spending time with the people I enjoy.  However, it was what has proved to me a typical day in my life.  I am very fortunate that I have learned to deal with getting tests and scans with almost no anxiety.  I refer to January as the cancer test month because it’s one of several months that I have both CT scans and MRIs and infusions.  I certainly don’t look forward to it, but make the best of it and just move on.  I have CT scans every 3 months and, must admit that I hate drinking the 2 large cups of iodine dye.  However, the MRI is the one I dread most.  Not because it is a difficult procedure, but because it is the only one that does not allow use of my port for the needle insertion.  A little history… it has always been pretty impossible to find a vein for me.  (I recall when I was young hearing two nurses talking about me and declaring that I must be a Bionic woman because there were no veins to access.)  So, what does this have to do with yesterday, you ask?  Well, at my last recent visit with my Breast surgeon, I mentioned this.  Being the caring doc that she is, she offered to look into this.  As a result, her nurse had many conversations with the  folks that do the MRI (not my cancer center, but a private group, that pretty much has a monopoly on breasts imaging).  So, yesterday I went to my appointment with a slight expectation of things being better.  NOT. First, it was if no one had ever heard of this request.  When I wouldn’t let things go, one of the techs said she has made it clear that mt port could not be used.  Now, this all happened after I had been to the cancer center, had the needle inserted, and incurred yet another cost for this appointment.  So, I calmly left the MRI office and went to the Breast surgeon’s office and talked to the nurse and nurse navigator.  The nurse had already talked to the MRI office and the saga continues.

I’ll stop there with my story and share another brief one of another survivor’s.  A recent conversation about a survivor resource room in a cancer center.  The room is staffed by survivors.  In order to volunteer here, you must have completed treatment for one year.  This is a good rule for several reasons.  However, this survivor (no, not me) has a chronic cancer.  She has been told she will never get to the point of not needing treatment.  This is one of those things most people don’t understand about cancer.  I know I did not.  I thought cancer was cancer.  Boy, was I wrong.  Anyway, would  it not be more survivor friendly to make an exception in cases like this?  Do we not want to have these survivors also participate?  What message does this send?

So, to me this all comes down to survivorship and the rubber meeting the road.  Survivorship is not only about money, resources and books to read.  The core of it should be about streamlining processes and thinking about what brings quality and normalcy to the life of every cancer survivor that walks in the door of a cancer center and other medical facilities serving survivors.  Frustrated but not done…

Patsy

6 Comments

  1. Ruth

    You are a true hero in my eyes. Not sure I would have the sameositive attitude you always show. Miss you ruth

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  2. Preach it sister!

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  3. Alicia Logsdon

    Thank you Patsy for sharing with us, it always gives me more insight into the world of cancer each time you do. I also missed you at group yesterday. On the note of survivors serving survivors I agree with you on that. It is intresting that you should end with that. My sister and I were over at Presby Main Cancer Center yesterday. For me Sheila, Patient Relations, has always been at the desk to the entrance of the cancer center. I always found it so comforting to know that someone I knew was there to greet me and talk to me a few minutes, take those little bit of butterflies away.

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  4. David Pschirer

    Absolutely right Patsy except this is not just about cancer survivors (to me). I think it just shows that are a lot of moving parts in our medical system and though I think its come a long way it’s still got a looong way to go towards being about the patient.

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  5. June Stoddard

    I had a similar encounter with a nurse and a tech when I was going for treatment and went to have a follow up CT scan. I still had my port at the time and they tried to access not successful, then the arms, then my hand and then right by my knuckle on my left hand..I still remember vividly the pain was a WOW! I started crying asked them to get away from me at that point I told them I would go up to the chemo room and have my port accessed by one of the nurses there. This is the weird part I sat in that chemo chair and felt SAFE! That is when I said to myself ok you have really lost your mind when you sit in a chemo chair and feel safe.

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  6. Patsy,
    Thanks for sharing your thoughts. I have to say that my experience has been different. And I know that and am thankful. I have been lucky enough to have good communications between all of the parts of the machine. And it’s exhausting to keep it all working together, but worth it.

    I am also a chronic cancer patient. I have not participated much in face to face support groups, I found a good facebook group AND I have a very supportive group of friends and family. But I have seen that requirement before in other group and/or volunteer positions. I didn’t know about chronic cancer until I’d been in the ‘system’ for about two years and there are so many of us out there. And I think we really do have a lot to share. I hope you never become chronic. You have a great way of writing and I enjoy your blog!

    Like

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