My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Sunday, October 24, 2010

What Helped and What Didn't?

If any of you who read my blog have time, I'd love your input!  Many people who have friends newly diagnosed with appendix cancer contact me to ask me how to best help.  Many have never had a close friend with cancer and have never been cancer patients themselves, so are at a loss.

I try to tell them what was helpful from my experience, but I'd like to know what you thought was helpful also (just leave comments here or email me).  Did people do and say things that were helpful to you?  Did some inadvertently do the wrong things, even if they were well-meaning?

I'll itemize here what was helpful, and not helpful to me:

  • I appreciated anyone who helped me with my kids, both watching them and supporting them emotionally.  My mother-in-law was my godsend, she watched my kids when I had to leave the state for appointments and for surgery, and was always their "counselor".  Teachers at school also paid special attention to my kids and knew to let me know if they were struggling in any way.  The worst part of my diagnosis was the effect it had on my husband and kids, so I greatly appreciated anyone who supported them.

  • I was grateful for offers of help with physical things, but was also glad that everyone respected my right to do all of the things I normally did like cooking, cleaning and shopping; I wanted to do a lot and didn't want to be treated like an invalid after my surgery.  People respected that.

  • I appreciated a donation I received from my church and the many phone cards people gave me; cell phones weren't quite what they are now when I was diagnosed, and everyone wanted to be able to help me communicate with my kids when I was gone.

  • I appreciated the many cards and notes of support I received.  I also appreciated when people gave me books or articles about people who had survived a cancer diagnosis.

  • I appreciated that my husband was always there for me, loved me unconditionally and was my "rock". He stayed at the hospital as long as there were visiting hours, but didn't stay the night (that would have made me feel badly).  He played cards with me and walked the halls with me and wouldn't eat in my presence if I couldn't eat while I was in the hospital.  He let me do as much for myself as I could.  He always let me know he could take me to chemo if I wanted him to, but also respected me when I wanted to transport myself.  He never treated me like an invalid or "sick" person, but he went with me to all of my doctor's appointments.  He helped me access my lab and CT results within 24 hours of my tests so I wouldn't have to wait for my doctor appointments to learn the results.

  • I got very frustrated with those who felt I always had to "think positive" to survive.  My life was a mess after I was diagnosed.  Sometimes I felt depressed, afraid and angry, and I wanted to be able to voice that.  I didn't always feel positive but felt I always had to put on a positive front as so many insisted I wouldn't survive if I didn't "stay positive".  It always occurred to me that if I had a broken leg or pneumonia, no one would have told me I had to have a positive attitude to get better....they would have told me to go to physical therapy, eat well, rest, drink lots of fluids etc.   They would have understood if I was sad or in pain or depressed with being ill. My best friend helped me the most, I didn't have to put on a positive front with her, I could always express how I really felt when we talked.

  • I'm not sure why, but  many told me when I was first diagnosed about all the people they had known with cancer who had lost their battles.  I was puzzled at why they felt they had to tell me that?  It happened multiple times.

    That's all I can think of right now, but I know many of you had people who supported you, and maybe some who inadvertently did things that were not helpful.   If you share them here, I think many who ask these questions will appreciate your input.  Thank you in advance!

2 comments:

Alice said...

So much of what you say rings true for me as well.

I was also annoyed those people who insist that they know you'll be fine. Yes, we all want to believe that, but if it was as sure as these people insist it is, why are my drs still checking me for possible recurrence? It's well-intended, but very frustrating.

Regarding the people who have to tell you about anyone they knew who died of cancer, it's similar to woman having to share their horrendous labor tales with any visibly pregnant woman. (I share my labor stories because they are funny tales of very easy labors - I try to give women the other side of the coin.)

Carolyn Langlie-Lesnik RN BSN said...

Hi Alice!

You made me smile about the childbirth stories...I may have spread some bad labor stories to expectant mothers, so I guess I'm just as guilty, just not in the cancer sense! Good comparison!

My best friend did help me in that sense too...she is also a nurse and knew I had long odds, so though she felt I was tough and would do anything to beat it, she also related to my sense of uncertainty, she knew I might NOT beat it. I was able talk to her about the possibly dying, about leaving my kids and husband etc. We had a lot of talks about that. Many others wouldn't hear of that because it was "negative thinking". But we with cancer need to deal with and be prepared for all possible eventualities. It's healthy.

Thanks, Alice!

Carolyn