Tales from the Front

Trying to explain myself, round two: Cancer is tiring. Cancer is depressing. Cancer is life changing. Sorry. I don’t make the rules, that’s just how Cancer is. Individual responses to well-meant queries multiply the number of times I must re-live an unpleasant experience. I’d rather focus on what I will do next. Either read the blog, or contact my caregiver – but please refrain from demanding a personal narration of what I am going through.

Unfortunately I got many negative responses from people who did not understand my last post. They misinterpret my distaste of the “battle/war-on-cancer” analogy. It’s the Analogy I dislike. It is the analogy I don’t like.  I never said I would forgo treatment. Whew! Because of my last blog I’m inundated by demands to fight! Fight fight fight! If you had cancer like I have cancer, believe me, you would understand why the analogy is inappropriate. Nothing I do remotely resembles Muhammad Ali in the ring. Nothing.

My second surgery, while less invasive, affects me unexpectedly. Post operative depression descends, leaving me vulnerable, very, very vulnerable. In this emotionally fragile state when I’m required to describe what I went through, answering your question creates yet another memory of what I went through, emphasizing and magnifying what I went through in a most unsavory manner. Ugh. Since I really can’t expect my caregiver to circumvent my pain I submit the following things you ought to avoid saying to cancer patients and why:

1) You’ll be fine.

When Cancer Patient says “I’ll be fine,” to young people, children and the very frightened, I’m trying to soothe them. When you say it? You trivialize a life threatening disease. Oops.

2) Every thing happens for a reason

Yeah, yeah. and Not. I didn’t get cancer so I could experience love community and caring. I got cancer because I suffered unmitigated stress ten years ago. That I am experiencing love, community and caring doesn’t mean I arranged this experience to learn something. Seriously.

3) You don’t look sick – you look great!

Ok, maybe I do look better than you expected, but I feel awful. Having to recount my symptoms to each person who asks, forces me to dwell on them more than I would like.  I implore you, refrain. P.S. to men, yes a compliment is fine, it’s coupling the first idea to the second that causes me mental distress.

4) My brother’s friend had breast cancer – here’s what happened to her. . .

She died! I didn’t appreciate the shock/scary story I was told last Friday by a self-professed “healer.” The Reiki practitioner wants me to try some kind of oil. The brother’s friend wouldn’t try it, and guess what? She died! Great. Medical advice from the person who’s watched Grey’s Anatomy who fancies her self so much of a healer she don’t need no diagnosis to tell me what to do.

Man was she insistent! She left convinced I want die because I wasn’t instantly on board. I resent that sort of assumption. If you’ve got a cure that some relative or friend of yours used (or failed to use) don’t bully me into trying it. First off I hate being bullied, and second off, if you don’t even know the strain of cancer I have, if you’ve never even studied the blood tests, mammograms, sonograms and MRIs – you don’t have enough information to advise me. So please, don’t advise me. And freakin’ don’t try to scare me with stories about people who have died. For the record I know enough people who have died of cancer to know what that looks like.

And if you ever have the chance to protect a cancer patient from a vulture like this I certainly hope you do.

5) That’s why I don’t use mircowave/anti-perspirant/underwire bra etc.

Goody for you. Statements like this blame the victim. ouch

6) On the bright side you can get a whole new set of boobs!

Additional surgeries are not without risk. Comments and conversations like this force Cancer patients (me) to discuss/defend a highly personal decision to perhaps forgo reconstruction. I don’t care if you are my sister/cousin/mother don’t go there. The only other person with a vote on this one would be a partner to the patient, and even so, partner’s vote is only partial. Re constructive surgery is really up to the patient.

7) How did they find it? What stage was it?

In a word, “ghoulish.” I suppose you don’t know what to say and you are trying to make conversation but I would REALLY RATHER NOT RELIVE THAT MOMENT again and again and again. Please Ask cancer patient’s partner or caregiver this question if you must know.

8) Have you tried marijuana oil/vitamin C/cutting out sugar?

Similar but not quite as disturbing as bullet point #4. Having a healthy diet is important to anyone, cancer patient or not – – but if you don’t know what medications/herbs I am currently taking then you don’t know how your proposed alternative therapy will interact. Your unsolicited dietary advice might do actual harm. Besides which, if a patient has a fatal strain of cancer, why shouldn’t a pancreatic cancer patient, for example, enjoy sugar for as much of life as she has left?

9) Can I do anything for you?

This question isn’t terrible it’s just too vague for most people in the throes of cancer to answer. After all maybe there is a specific need like “Walk my dog?” But then an awkward moment follows when the first person admits she can’t do that.

To this question I had answered at first that we could use organic broccoli, as it’s quite expensive and I eat it every day. Unfortunately we ended up with too much perishable food. oops. If I wasn’t sick I would have orchestrated that better. Which is why I asked a friend to handle the status update email. He’s not sick and thinks things through.

A specific question is a better question. For example several friends have offered to drive me to appointments. That is good to know, although for now I’ve done fine with my primary caregiver orchestrating all the care.

10) You’re strong! You’ll kick this!

No one I know who died of cancer was weak. No one. Nonetheless they couldn’t kick it. Sometimes people can not. They deserve love and encouragement, not judgement and blame

11) We could all be hit by a bus tomorrow

I am doing my best to live while knowing cancer is actively destroying my body, the proverbial bus comment is dismissive and unintentionally cruel.

12) Stay positive!

I chose to cope in my own way which includes experiencing all of my feelings. I do not wish to play down the seriousness of my situation.

13) I’m praying for you!

I’m not comfortable with others getting attached to my personal journey. If your prayers are not answered  your disappointment is not my responsibility. I’m equally not crazy about people taking credit for a recovery. IMHO time spent praying is time not doing something useful. If you don’t know what else to do write a check to a cancer research group or take a walk or meditate. But don’t pray and make it my fault that I got sicker faster than I expected, that I required more than one surgery.

I’m not praying. I’m out doing what I can while I can. I suggest you do the same. I showed a couple of houses yesterday, jogged 5 miles, went shopping. If that sounds like the sort of stuff I did before I was sick, it is. Which brings me to another reason I hate the battle analogy for cancer – – it implies occasional armistice. Unfortunately I don’t get weekends or holidays off. Yup, Thanksgiving on my restricted diet is going to suck.

Even while I casually shop for groceries I’m still Kumari, the cancer patient. It’s a 24/7 event. A tincture or a filter more than a war zone. I imagine those readers getting quite annoyed with me for doing inane things like paying my credit card bill when I should be FIGHTING. Fight Fight Fight!

The dichotomy bugs me. Fighting verses not-fighting? Cancer isn’t like that. I prefer the description of cancer as an “experience” or cancer as a chronic disease, which brings me to my last bullet point:

14) Get Well Soon!

I suspect this is a short form slang for I/we hope you get well soon but in its command form it’s pretty demanding. Some cancer patients never get better – and as I hope I have made clear this is NOT because they are weak or didn’t have enough prayers. Some patients go into remission for months/years/weeks at a time. And yes, some do get better – but since the first marker for most forms of the disease are 5 years (in my case 10) no, it is not going to be soon. Sorry. I don’t make the rules.

Sat Nam