The Myth of the "Good" Cancer Patient

[izzydoesit]

I will preface this by saying that this is my personal point of view and not the opinion of this station .

Since I seem to be having a difficult time of late relating how I feel to people who have not had cancer, I'm going to take this opportunity to squat and share here among my tribe. Maybe I’ll find out I am just plain full of scat, in which case I will set aside 40 days to go alone into the desert to wrestle with God.

Common sense tells us when catastrophe befalls us it's more productive to have a good attitude, to have gratitude, faith, hope, and lend a helping hand to those less fortunate. That's the ideal goal. Sometimes despite our best efforts, we fall short of this: we complain, feel sorry for ourselves, feel alone, that we've been dealt a hand we don't deserve. We may harbor resentments for those who've disappointed us, misunderstood us, avoided us, or even deserted us. This may lead us to isolate and fall into further despair.

What I'm learning--with much difficulty and pain--is that there are no extra points for being a "good" cancer patient; that is: patient, tolerant, accepting, cheerful, uplifted, courageous, willing to overcome any odds. Because of the example set by extraordinary individuals like Lance Armstrong, we may feel we've somehow failed if we fall short of that example, like we're being graded on how we get through cancer treatment and its aftermath.

Have you ever said to yourself:
- Why is it taking me so long to get better?
- Why don't I feel happier and more motivated now that treatment is finished?
- Maybe I'm not trying hard enough
- Maybe I should suffer in silence so I don't worry or upset those around me; besides, they're probably sick and tired of hearing about my cancer
- It's so petty to care about my appearance, I should just be grateful to be alive
- My bad eating habits (and/or lack of exercise, negative attitude, selfishness, laziness) probably contributed to my getting cancer
- It's ok that my friends don't call as much anymore, I can't expect their lives to stop just because I got sick
- I should be strong enough to deal with this and figure this out on my own
- Something must be wrong/defective with me
- Why can’t I snap out of this depression and my negative attitude?

All those who answered no to all of the above are excused. For anyone who answered yes to even one of the above, consider this: you are not alone. In fact, you are NORMAL. The truth is, some of us will hardly bat an eye through treatment; will train for marathons, get married, have kids, go around the world (my onc had a patient who went to HK in the middle of chemo with no repercussions). Others will quit work immediately, feel sick, depressed, like the world is closing in on them. Unfortunately, there's a lot of shame attached to a cancer diagnosis (we become "untouchable"); we feel shame around how we conduct ourselves through cancer treatment, shame about how we recover post-treatment. We are constantly judging ourselves the way we perceive others are judging us (aren't you well YET?). We're so exhausted by the whole experience of treatment as well as managing our personal and professional lives, that it never occurs to us that what we need to do most is take kind and loving care of ourselves. We're so busy performing damage control on our relationships (which need plenty of shoring up!) that we don't see that the most important relationship in need of repair is the one with us.

My new therapist (who specializes in post cancer treatment) said that it's OK to lick your wounds after treatment--for months, if necessary. There’s pressure for the patient to get back to "normal" because it's more comfortable for those who’re afraid of getting cancer. But the patient is the one who suffers most and who desperately needs compassion. Like the neglected child assumes responsibility for his parent's lack of attention, the cancer patient may assume responsibility for his illness and the repercussions it has on everyone around him. We’re deathly sick and we worry about the trouble we’re causing for everyone around us! This insult, added to the injury of the disease, is too much for us to bear. We crumble, little by little.

The challenge is to reclaim who we are. We can start by letting ourselves off the hook and giving ourselves the compassion we so desperately need. We can give ourselves permission to take as much time as we need to regain our health and our strength, permission to weep out loud at the loss of our hair, permission to curse God for how sick we feel. We can take back our power and dignity by talking out loud and without shame or apology about our illness or why we need help. It’s not our fault we got cancer and there’s nothing that says we’re bad or defective if we don’t conduct ourselves like Mother Teresa. (Even saints have their defects.) But we can't do this alone.

Finding support groups (including this board) has been a lifeline out of the abyss for me. Four months out of tx and I’m only starting to piece together a recognizable map of where I've been. I encourage anyone in need of a guide to seek help from therapist who is trained in dealing with cancer issues. The relief you get in talking to someone who "gets it" and can offer suggestions and/or solutions is priceless.

Kim

[anjou]

Kim --you write beautifully, would you mind posting this over on the NHL board?

anjou

[julieannie]

[/color]<blockquote><font class="small">In reply to:[/color]<hr />
The relief you get in talking to someone who "gets it" and can offer suggestions and/or solutions is priceles.

[/quote]

That whole piece was wonderful to read. It was a sign that you truly do "get it" because you described my feelings to a 'T'. You write honestly and in a way we can all connect to. Thank you so much for sharing this. It brought tears to my eyes. I'm going to print it out.

[thewisemoose]

Hello,
I have to say that my anger towards being diagnosed has driven me harder to do whatever it is I have to do in order to kill off the HD. It was my anger that drove me through the chemo, it was anger that got me through the complications with the surgery, and it will be the anger that helps me kick this cancer's ass and force my lungs and body to as near as "normal" as possible. If you have a feeling either good or bad, why not exploit it to your advantage?

Even though you may feel depressed or resentment towards being diagnosed, you should take whatever you are feeling and try to use it in a constructive way to achieve a realistic goal. You are not alone if you have fears, depression, anger, and are struggling before starting treatment, in treatment, or post treatment to stay somewhat positive. Part of me says I should not have gotten this and what the hell did I do that caused it. The other part of me says ok so I have cancer, now lets waste the sucker...starve it, blow it up, poison it, or cut it out so I can get on with life. There is no book or manual on what should feel or how you should react. I know it helped me to use the negative energy I had and recycle it to help kill off the cancer and make me more stubborn in my determination to get my body in better shape then when I was pre-diagnosis. It is hard to manage the negativity surrounding a cancer diagnosis, no matter what age you are. Right now however I am wrestling with “scanxiety” ( anxiety from a scan before you know the results) as I call it because I had a cat scan and a pet scan but do not know the results. It is extremely challenging to feel anything but despair after a scan that you don’t know the results of, especially if your cancer either got worse previously, or relapsed. If anyone has a solution to “scanxiety” that doesn’t involve booze/drugs/massive amount of chocolate let me know.

HD IIIBs Diag: 10/24/04
AVBD 8 cycles 11/04 - 4/05
PET Scan lights up/Cancer Worse 4/28/05
Onc: "This is the oddest case of HD I have ever seen" 4/28/05
Chest Port 5/13/04
Thoracotamy 5/13/05
Pnemonia 5/18/05
Intubated on Respirator 5/19/05-5/27/05
Bleo Toxicity Diag: 5/26/05
Acute Respiratory Distress Syndrome Diag: 5/26/05
Inpatient Phys Rehab: 6/11/05-6/18/05
ICE 4 cycles 9/05-11/05
Auto Stem Cell Transplant 12/06/05-12/25/05
Outpatient Phys Rehab started 1/5/06-ongoing
Awaiting 20 Rads

[angie62172]

Well said!

I also agree with Moose in that negative feelings *can* be channelled into increased determination to fight. There's nothing wrong with being stubborn and tenacious when you use those qualities for good and not evil.

We HAVE to take care of ourselves throughout this process. We HAVE to make ourselves the number 1 priority, and for some of us that's hard. You learn to lose the baggage that you really don't need.

I've always been a "glass is half full" person, and although my dx and subsequent treatments have taken a toll on that, I feel like my glass is even fuller. I now realize things about myself and the people I surround myself with that I've never realized before. A lot of it has been good, some of it has been bad. It's given me an opportunity to take a time-out in life and really give things a once over.

Life will get back to normal after HD. But it's definitely a new normal. I certainly see things differently now.

Angie

[BioProf]

Well said Kim. I was able to deny the whole experience for about the first 4 years and be the "good" patient going through treatment and then bouncing right back. I couldn't keep it up though and thankfuly found this group, TNT and other outlets to channel my survivor angst. I think I'm doing much better now, but i still feel like I must be a disappointment (to whom I don't know) since I've survived 6 years and still haven't circled the globe, climbed Kilimanjaro...

Today is a good day though. I get to come out to my students about my cancer experience. We're talking about hematopoeisis- how blood cells are made in the bone marow- and topics include stem cells, neupogen, procrit and CD markers.

I'm very glad that this forum is a help to you. It's been huge for me.

Steve

PS LAF is doing a ride in Philly in September. Interested?

[Roberta1]

Kim,
Thank you so much for that! I've only been through a preliminary staging (still waiting for a few more tests) and will start chemo at the beginning of Feb. I'm so glad to have read that before starting my treatment. I've already begun trying to be the 'good patient'. I sometimes feel like I'm setting myself up for not being 'allowed' to feel sick later. Everyone's trying to be positive- "so and so went through chemo last year and was fine! I'm sure you have nothing to worry about'...'Don't worry you're strong I'm sure you won't get too sick'... I know they're only trying to make me (and themselves) feel better about it all, but it kinda make you want to scream at them.
Your post definitely put things into perspective for me. Who cares if they're OK with it all or not, I just gotta worry about me being OK!

[luvstoread2]

Kim,
thank you for sharing this {{hugs}} Lord, how it did ring true with me too.

[Moondoggie22]

I got my caffeine in me and sat still long enough to read through and decided this has to get bumped for any of those people not reading the thread we were talking about this in. It's excellent reading no matter what stage of the whole "cancer thing" you're currently involved in. In fact, it's well worth printing out and reading a few times each day as needed

[jam]

Thanks for the bump, Brian. And thanks again for the original post, Kim. It was a much-needed re-read.