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Of Course I’m Grateful to Be Alive, But…

Recently Dear Hubby and I met with another specialist (I don’t keep track of the number of docs anymore) to consult about an upcoming medical procedure I will soon be having (no worries, minor surgery). Is this yet another procedure to add to my personal domino effect lineup? There’s no proof, but probably.

But this post isn’t about any procedure or any particular domino…

No, this post is about gratitude and silence. So, first I’d like to ask you the following question:

Have you ever felt as if you’re supposed to keep quiet and just be grateful for being alive?

After the above mentioned consult, Dear Hubby and I left and went about our business as usual. Then one evening a few weeks later, Dear Hubby brought to my attention something that latest specialist had said that he’d since been thinking about. That something said went along the lines of:  Yes, cancer treatment is harsh. Yes, the long term side effects are tough too, as are the side effects of AIs, but you’re alive. 

The discussion between Dear Hubby and me came about because of a certain message inside a Chinese fortune cookie that said:

Very true, but…

I found it interesting that Dear Hubby had been silently pondering over that doctor’s recent remarks.

I had not said anything because sometimes I fear I am too touchy about such matters. I’m sort of a word freak, I suppose.

Anyway, Dear Hubby went on to say that HE felt that comment was patronizing and even condescending. It seemed to suggest to him that I/we should just keep quiet about my lingering side effects from past and present treatment and instead focus on being grateful that I’m still here.

I had had the same thought, but had let it go.

I am grateful to be here. I am very grateful to be alive and kicking after my cancer diagnosis. I am grateful there were/are treatments that worked and still work to keep me NED. I truly am. I know many others are not so fortunate.

This is another fine line of survivorship to walk – this whole gratitude and silence thing.

Sometimes, I don’t feel I have the right to complain about side effects and collateral damage from my initial cancer treatment and ongoing endocrine therapy as well. I realize my friends living with metastatic disease would love to be in my shoes. They would love to be NED. I realize they put up with horrendous side effects day in and day out and willingly do so hoping to add months and years to their lives. They hope and pray more treatment options will be available to them when their present one stops working. Side effects mean something entirely different to them.

It’s true, in comparison my issues are minor.

What do I have to complain about?

On the other hand, I also know these same amazing individuals living with mets are some of the most understanding and compassionate people I know. Most would never think of discouraging me from speaking out about my less dire issues, or anything else for that matter. In fact, these very people are often the most supportive of all. They get it like no one else gets it.

My friends with mets inspire me to speak up about my issues. They inspire me to speak up about a lot of things.

So yes, I did feel the unspoken message in that doctor’s words was:  Maybe you shouldn’t complain about your lingering side effects. Maybe you should just suck it up and be grateful that you’re alive.

And this post is not meant to be a criticism of that doctor. Okay, maybe it is a little bit.

I’m trying to make another point about tiptoeing through survivorship.

And that point is that another expectation out there is that we survivors should perhaps keep quiet more often. We shouldn’t complain, or even talk too much about certain things.

We should suck it up more and just be grateful.

The danger in that perhaps is that some will suffer in silence. Or that too many will be satisfied with the status quo.

If we don’t speak up about what we are dealing with regarding treatment side effects (or whatever it is), who will know? Who will listen? Who will care?

And how will things ever improve for those who come after us?

So again…

Of course, I’m grateful to be alive, but…

This does not mean I must be quiet.

Nor must you.

I love the quote below from Audre Lorde, author of The Cancer Journals. Somehow her words seem fitting, not just today and not just for this post, but for any day and any post:

Your silence will not protect you.

So true.

Don’t you agree?

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Have you ever felt as if you’re expected to keep quiet and just be grateful for being alive?

Do you find it hard to speak up about your issues – whatever they are?

 Of course I'm grateful to be alive, but.... #gratitude #cancer #survivorship

 

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Tisa

Sunday 21st of April 2019

I've been reading breast cancer Facebook group posts: Woman after woman with side effects and worries. I can see why an Oncologist would get burnt out. I think mine is getting there. They cured us and we should be grateful. I don't think I could deal with this disease day in and day out as a profession. Lingering side effects probably make them feel uncomfortable that they could not prevent/stop it. I hope they have support for them. That said I am having a bunch of post treatment side effects. I am finding that Primary Care Practitioners don't know what to do with us. I feel that I am practicing "cowgirl medicine" rounding up doctors for various symptoms such as vertigo, tinnitus and horrible rib pains. Yes I have a pathologic complete response, but I am hurting. We do have to be vocal like the women before us who would not settle for radical mastectomy or who underwent clinical trials with not knowing what treatment group they were in or if it would be effective for more than a few months.

Julia Barnickle

Saturday 20th of April 2019

I’m living with mets, and I’m very grateful to be alive - and at times NED. AND... if we don’t point out the side effects, how can we expect the treatments to improve? I’m currently on a clinical trial, and I keep pointing out that a sticky plastic film over the top of the foil makes it almost impossible to get the chemo tablets out of the packaging, on days when my fingers and thumbs are split and bleeding. I seem to be the only one who mentions this - although I’m sure it must be worse for others. So, despite the possibility that I could get kicked off the trial for being awkward, I feel I have to speak up for myself and others. It’s not complaining - it’s FEEDBACK!!

Nancy

Monday 22nd of April 2019

Julia, It's not complaining - it's FEEDBACK! Exactly! I could not agree more. And good for you for speaking up about that sticky plastic film and whatever else you decide to speak up about. So important. Thank you for sharing.

lopsided blogger

Sunday 22nd of November 2015

It seems most people can't understand that there is no expiration date for a lot of the crap that the cancer brick through the window leaves behind. Even doctors who should at least know that don't always act in line with the thought. But we are still here to say something about it, so we do. And we hold the focus where it needs to be: CURE NOW! Thank you for your excellent post.

Nancy

Monday 23rd of November 2015

Lopsided blogger, It's great to hear from you. I like the way you put that - "no expiration date on a lot of the crap the cancer brick through the window leaves behind." So true. So very true. And yes, we will keep speaking up. Thank you for reading and commenting. Hope you're doing alright.

Helensamia

Saturday 21st of November 2015

I will never stay quiet about the side effects of cancer treatment as maybe it may help someone in the future and doctors might start to aknowledge these side effects too... I believe we have to consider a quality of life and not just about being alive... There is a balance that we need post cancer...

Tiago

Tuesday 20th of May 2014

No, just being alive isn't a grand thing in itself. If it was, we wouldn't have so many suicides. Living is a grand thing, but just "not being dead" is not enough.

I'm immensely grateful that my wife is alive and has very good odds of living long enough to die of old age. So is she. Which doesn't mean we can't be angry and upset that we have lost so much and now have to pick up the pieces. Before her diagnosis, cancer was something that only happened in movies, on TV, online. I've never lost or even seen a relative with cancer. And then suddenly this thing barges into my life? Hell yeah I'm angry. And grateful that I still have my wife and a good chance of rebuilding my/our life. And angry. And grateful.

I want my wife to live to the fullest, and as long as there's anything I can do, anything at all, I'll never settle for "just be grateful she's not dead and stop worrying about minor details like making life worth living".

Nancy

Tuesday 20th of May 2014

Tiago, Emotions are very complex and we are capable of feeling many different ones all at the same time. So of course we can feel grateful to be alive, but at the same time we might also feel anger, confusion, or whatever it might be. Post-cancer diagnosis there is considerable adjusting and adapting that must happen, and this goes for partners too, as you well know. All of this takes considerable commitment, lots of patience and tons of TLC. Good luck to you with things. It sounds like you are willing to do what it takes.