What They Don't Tell You

These past few weeks have been a hell of a year.  There are a lot of things that no one tells you about cancer, surgery, and the multiple effects they can have on ordinary life.  A good friend of mine who has been on his own ride with cancer, did warn me at the beginning that I'd either not know enough things or I'd be inundated with too many things I don't need to know. He has his own blog (The Cancer Sucks Chronicles) and encouraged me to start writing on this site again as a release of sorts, so here I am. Blame him.

Once more, I feel the need to complain about the pain side of the surgery. Partly because I'm still furious about it and partly because I feel entitled to a little whining. I wasn't expecting this level of pain, and wasn't led to believe it would be as bad as it has been.  "Minor discomfort around the incision" is what I was told to expect. That misleading statement was not only wrong, but somewhat cruel.  There should be an entire handbook dedicated to the potential pain, and "minor discomfort" is definitely not how I'd describe it.  Mind you, the way I would probably word it would likely have to be heavily censored. 

I truly believe that with any surgery, and especially one where you lose a physical part of yourself, there should be a longer and more frank discussion around what to realistically expect.  A little counseling session on the pain level that may occur and some guidance on how to cope with it should be standard practice. It would also help to have the surgeon and family physician in agreement on pain management methods before the surgery.  It could save the patient some long days of unnecessary and unreasonable pain.

A conversation on the emotional impact of cancer should also be part of a universal  care plan.  Some blunt talk about the feelings you'll likely have about not just having cancer (which is a huge shock to start with), but things like seeing your body for the first time after the bandages come off.  I thought I was more prepared for that than I actually I was. I think if someone had talked with me in detail about how things might look after surgery and to expect that first glance to be devastating, my meltdown may have been gentler and shorter.

 I wish someone on the medical team had mentioned that emotional anguish is the other half of this battle. It may have made me feel a little less defeated. I mean, I knew I'd only have one breast (obviously) but the puckered stitches, swelling and bruised skin looked like a weird science experiment.  I didn't expect that, and hadn't really thought a lot of it before the surgery.  Some warning would have been nice. This is going to take a very long time to get used to and for once, I'm really glad that I'm unattached.  I may never be comfortable enough with myself to ever again consider any other relationship status. No one mentioned that, but they should have.

A hint at the possibility of workplace separation anxiety would also have been beneficial.  After working full-time for 38 years, I don't know how to be at home for 6 months and keep my sanity.  I honestly didn't think I'd miss my job so much, and that being out of the loop on everything would feel so isolating. It's only been a month, but I feel like I don't belong anymore, even though I know that's not the case. At least I hope it isn't.  No one talks about that, either. When you spend more than half your life doing something and then suddenly you're forced to stop, it's hard to not feel cut off.  It's like someone stole my identity and it's hard to deal with.  This also was never mentioned, but it's another thing that should be.

I've spent many years challenging the lack of mental health professionals and services in Nova Scotia. I've seen too many failures and tragedies in the system and I now see another shortfall. Preventative counseling -  it should exist, yet it doesn't.  Physicians and surgeons know that cancer and it's baggage is likely to take a huge emotional toll on their patients, yet we don't have enough mental health professionals to be an integral part of the care team. It's also been proven that with a good frame of mind, patients will more easily recover from the physical trauma of surgery.  It's kind of tough to have a good frame of mind when you're dealing with this, though.  I'm thankful that I have friends who themselves have been through this to help guide me. I'm thankful that the physical things were dealt with very quickly, but I'm disappointed that an equally important part of this process wasn't addressed at all. Not before, or after the surgery. It seems wrong to me.

Fortunately, I have this forum to get things off of my chest (no pun intended).  Even though I have my family and some very good friends for support, who have all offered to let me vent to them, I won't. I couldn't anyway,  because there are too many times that I can't explain how I feel, probably because I don't even understand it myself. I don't want any of them to feel bad because they can't fix it, and I've often been on that side of the coin so I know that would happen.  I fear they would get very tired of me, very quickly. Besides, everyone has their own bullshit to deal with, they don't need mine piled on.

So I think  I'll just vent here because it's the easiest way, and if I'm boring anyone, they can stop reading at any point and scroll to something else. I won't even know, no harm done. 

As mentioned earlier, blame the guy who encouraged me to write again. 

Step One - Check

I'm almost 2 weeks post mastectomy.  All in all, it wasn't horrible, but it hasn't been a walk in the park, either.

On surgery day, while waiting for my ex husband to come pick us up (amicable divorce, long story), nerves got the better of me. I'm glad I hadn't been allowed any food for hours beforehand (no more detail should be needed here).

Everyone was tense on the drive over, probably feeding off of my energy.  The directions on the hospital paperwork skipped a step, and after sitting in a waiting room with a few expectant grandparents and fathers for 30 minutes, I began to panic that we weren't in the right area.  We weren't.   Well, we WERE, but no one had told me there was paperwork to pick up first, several floors down.  Once I realized that, then I panicked because time was ticking away wasted.

After sorting it out and following the blue train to the red boat and then the green wave back to the 3rd floor, I was already done with patience.  Anyone who has been to that particular hospital will know what I mean.   

The staff were running behind, my daughter was getting antsy (usually followed by mouthy), my sister was a wreck and the ex was nowhere to be found.  I was getting annoyed and dumbfounded as to how the first surgery of the day (mine) could be "backed" up when my surgeon and anesthesiologist were there and ready to turn me into a one-tit wonder.  

The meltdown came when the ex walked around the corner with coffee and bagels.  In hindsight, I'm sure he thought I was already in surgery.  However, after many married years of him doing many things like that, it was the tip of the iceberg. I had really hoped to keep my mascara intact for the surgery, but the coffee scent undid me. And yes, I went into that OR looking as good as I possibly could, because screw cancer.

By noon, I was home and settled on the couch.  There wasn't much discomfort, but I was pretty medicated so probably just hadn't felt it as much.

Three days later, I felt it.  I mean, really felt it (and still am). I had assumed I would have some pain at the main surgery area, but haven't so far.  The pain I do have is under my arm and feels like I'm being pinched, stabbed, burned and beaten simultaneously. 

I have no information on how the surgery went, if there was anything of concern etc.

My surgeon is an excellent slicer/dicer, but he appears to not know how to "people".

He also wouldn't prescribe anything for pain and said Tylenol should be enough.

He was wrong.  Very wrong. 

I see him in February for the post op appointment. When he's done talking, I may jusk kick him in the man parts till he drops and then toss him a bottle of Tylenol.  

My next blog post could be from jail. 

The Countdown

Well, two blog posts in one week.  That's new.  Usually it's months, sometimes a year between posts. It's 5 a.m. and I can't sleep.  The thoughts in my head needed to come out, and this seemed like a good time to write.

It's 26  hours till surgery time, and I still don't feel ready.  I'm prepared in the sense of button-up clothing, pain med stockpiles and chore schedules for "the others", but I'm not ready for the rest of it.

My boobs never meant much to me before, especially since I'm not particularly well endowed in that area.  Now, however, they mean much more to me than they ever did.  I'm not sure how to navigate only having one.  I never really had a ton of cleavage, but now I won't have any at all.  What's going to catch the crumbs? Where is the boob sweat gonna go when I have a hot flash??  How uncomfortable is that damn prothesis going to be? How will I wear strapless anything when they don't make strapless bras for prothesis boobs?  All things I took for granted, and seemingly superficial, but all valid questions for any woman.

I'm at the mercy of the unknown right now.  I have a fear of something happening during surgery.  I am worried that the surgeon will find more than he planned on finding once he starts.  Scared that there may be cancer in my lymph nodes.  Terrified that this may be bigger than expected.  Holding my breath that the new pain in the other breast isn't also cancer.

Fear is new to me, and I don't like it.

I'm not someone who is accustomed to feeling fear.  I've been through many curveballs in life that brought worry, sorrow, challenges and heartache.  Nothing really brought fear, though.  Until now.  I don't know how to navigate it and calm myself and it sucks

In hindsight, I probably should have made some time for counseling, but I didn't.  With all of the preparation, appointments, paperwork and Christmas, there just wasn't a lot of free time for that.  So, now I have 26 hours to counsel myself for this new reality.   Too bad I can't bill for that, those people make a good penny.

Once again, today I will be leaning on friends and family to keep me away from the ledge.  It's a long drop down, thankfully they all carry a lifeline rope.