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.