Update from the mountain

Last year this time, I was in the midst of chemo.

Last year this time, I was still sore from surgery.

Last year this time, I was still ‘looking forward’ to radiation. TakeBreaks

Well, it’s not last year this time. The time is now, and I’m declaring myself healthy and (in the charming cancer vernacular) ‘NED’, no evidence of disease.

So….I’m off the cancer merry-go-round, folks, and unless I have something to report, I’m so outta here!

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Confidence and the lack thereof

Dear Diary,

It’s been six months since my last chemo. And guess what, another ‘side effect’ that no one ever told me about. Post cancer treatment, my confidence really took a dive.

Why, why, why? I’m usually a very confident person, taking everything in my stride. But now? For no reason in particular, I’ll feel a bit wobbly, like I can’t quite handle what might come my way. This is so not me.

courtesy of modifylifestyle.com

courtesy of modifylifestyle.com

So I looked it up (I always research everything – that is not always A Good Thing). I found loads of articles talking about a lack of confidence – yay! But reading the articles, they were talking about confidence in your body image post breast cancer, not about inner confidence. Body image, rightly or wrongly, has never been a problem for me.

I figured maybe it’s because, after years of feeling healthy and pretty invincible, I felt like my body had betrayed me. How sneaky of it to turn off that good ol’ cell death! There is nothing like staring death in the face to make you feel rather vulnerable, right? But … the big ‘but’… was this a ‘normal’ thing, or was I going quietly nuts?

I finally found an article written by a guy working at NBC. He said that post cancer treatment, all of a sudden he was insecure when submitting articles or interviewing people. If criticism of even the gentlest sort was offered, he was totally flummoxed.

Right, that is me, I thought. The good thing? It gradually goes away, you gotta (sic) just keep doing the stuff you always did, until ol’ Ms Confidence is back.

I can do that.

All cancers are not the same

That might seem like an obvious statement! One thing I’ve found, though, is that once people find out you have cancer, they always know someone who has/had:

  • the same cancer as yours, with possibly good (or bad) results
  • a different cancer to yours, but they are sure the story must be the same
  • the same cancer as yours, but different treatment
  • the same cancer as yours, the same treatment, too

Whatever the choice, take this to the bank:

Your cancer and treatment, and your reaction to it all is 100% unique to you!

You’ll see on the forums or Facebook groups that when someone gets a new diagnosis, the first thing they ask is

what is chemo/surgery/radiation like?

They will receive a variety of answers, mostly trying to be helpful. But none of them mean a thing, as someone else’s reaction will not be the same as yours! You can rely on none of these helpful people for a prediction as to how your treatment will go!

This came as a shock to me. After reading various forums and articles, there I was, ready to start some of the worst chemo around for breast cancer, and I was ready for a rough ride. In the end, it wasn’t nearly as bad as I expected. The next drug, which supposedly had fewer side effects, I found more annoying, as there were no known drugs around to counter the side effects (which plague me to this day).

So when a friend was diagnosed, what did I do? Did I keep schtum, with my new knowledge that any info I passed on was useless? No, I did not. Trying to be helpful, I gave her the benefit of my experiences. Note the use of the word “my”.

As I should  have known, her experiences have been totally different to mine, rendering my advice useless.

So sorry about that, maybe I’ll be smarter next time, but I don’t think we can count on that.

I’m not leaving the port, the port’s leaving me!

Cancer patients think in terms of milestones – or at least I did! Some are good milestones, some aren’t.

For example, finding out you have cancer is certainly a big milestone, but not a good one! Finishing one chemo regime? A good one. Starting another? Not a good one, but it is progress. Finishing treatment – great. The first clear scans will be great (that’s one that is still to come, so at least I still have something to worry about!).

Today’s milestone? I’m finally getting my port-a-cath out. It was put in the day before I started chemo (ouch!), and during treatment, I’ve been grateful to have it. It has spared my tender arms the ravages of chemo, which often trashes the veins. It’s not pretty, it’s not always comfortable, but it has been worthwhile.

What a port likes like on an x-ray

What a port likes like on an x-ray

Today, it comes out. I know the doctor would prefer to leave it in (probably forever!!), just “to be on the safe side”. I know what he means by that – in case the cancer comes back, it’s ready to go.

But I can’t and won’t live my life like that. I have to believe the treatment has worked, and that I have a long and healthy life ahead of me. That may not be true, and if that’s the case, I’ll deal with it. But for now, the new me says “no” to the port! Out ya’ come, baby!

he terminado

…and to put it another way, in another language, that’s it, I’m done, no more!

Yup. (image from feedwire.com)

Yup. (image from feedwire.com)

Today was the last day of my ‘radiation therapy’, aka death ray delivery. I had an extra 3 days tagged on at the last minute, to deliver a last shot of the ol’ rays to the tumour area, so hopefully all those nasty cells are dead and buried.

My chemo finished about 6 weeks ago, and so finally, at long last, I feel I’m ready to get back to my life. It’s a life different to what went before, in so many ways. Never again can you take your body and health for granted, never again will you ignore symptoms in the hope they will just go away. Never again (probably) will your body work exactly as it did before, given the possibly life-long effects wreaked on it by chemo.

But hey, I’m still here, as I always say! I view this as a bit of a wake-up call: don’t get too smug with your life, don’t be afraid to tackle new challenges, figure out what is really important to you (you’ll be amazed at how few things really are that important).

I plan on hitting the ground running, alongside the warnings from doctor and husband about letting my body recover!

Prognosis? Well, I’ve looked at the stats. But as my husband has said, statistics are just compiled data, and really have nothing to do with you. If stats show you have a 0% or a 100% chance of survival, it makes no difference unless you are that 0% or 100% affected.

I did ask my doctor about prognosis, and he just smiled and said “bueno” — I think I’ll be happy with that.

What’s in a name?

Online forums are ubiquitous, as you know, and online forums that deal with medical conditions are especially popular. No matter what we’ve had – surgery, contagious disease, cancer – we love to talk about it.

I like to think that most people just want to help, but this isn’t always the case. Some seem to like to make others feel bad. Even worse, sometimes the advice/info they pass on is just depressing and not helpful. For example, if someone is facing chemo and asking about side effects, is it really helpful to recite your own horrible experience, or is it more helpful to point out that everyone’s experience is different, and offer advice for avoiding the worst?

So, following the advice of my own personal cancer guru (you know who you are!), I avoid most cancer forums. There is one I follow, which has been unfailingly helpful and supportive (and doesn’t just deal with cancer). I’ve tried to help others on the forum, and, in turn, have asked loads of questions myself.

A question was asked the other day about what we cancer people should call ourselves. Don’t laugh! Labels are thrown around all the time re cancer (especially breast cancer, which gets an extortionate amount of attention).

Should we call ourselves “cancer survivors”? Well, to me, no. Even after all the treatment, that is all you’ve survived, the treatment – as you don’t know for many years if you have actually survived cancer!

Should we call ourselves “cancer warriors”? Again, to me, no. This is not a battle, and most of us don’t feel brave. We are just getting through this the best we can, and many times feel powerless, angry and scared – it does us a disservice to insist we are brave little women/men who are fighting the good fight.

But then if not those labels, what? Well, I don’t like labels. And (to me), cancer is no different to any other disease you can have. You have it, you are treated for it, and it either goes away or it doesn’t.

So for now, I’m a patient. In some months time, I won’t be. That’s about it. If you want to call yourself a warrior or a survivor, however, I don’t mind one little bit.