The Other Stuff

Last week I wrote about the things no one tells you about having cancer surgery.  It was mostly about the big issues like pain and the lack of counseling available.  However, there are other things that no one prepares you for, on a smaller scale but equally important.  These are things I had to learn on my own. Hopefully none of you ever find yourself in this situation, but I've started a Hints and Tips Guide for reference. 

The biggest thing I've learned is to pick your caregivers wisely.  They will be doing pretty much everything for you in the first couple of weeks after surgery.  I'm fortunate enough to have two of them, which turned out to be a good thing as they have been able to trade off on skill and patience levels.

One of my caregivers does not cook. She did tell me that before she moved in, but I thought she meant she just didn't like to cook.  It's a good thing she is the one who is in charge of the more personal care and not the feeding portion.  She's great at the nursing side of it, thankfully. 

My other caregiver can't do any of the bandage changing and the like at the risk of passing out, but she does like to cook so I didn't die of hunger.  The days that she had to go to work were iffy on the meal front.  There was one particular day when  I really thought that starvation would do me in long before cancer got a chance to.  Fortunately, my BFF showed up with Macdonald's, for which I will be forever grateful.  Somehow, she just knew.  If you have more than one person looking after you, check their skill sets ahead of time to make sure everything is covered off.

Another suggestion for the recuperation stage is to pick an easy hairstyle.  The caregivers will be weiding the hairdryer, so simple and short is the best bet.  Although my hair is already short, it does require a little more than running a hairdryer across it.  I spent many recent days looking like my hair gave up part way through the process.  In hindsight, I think they may have been the days when I wasn't the best patient.  The "homeless look" seems now like a caregiver revenge tactic.  Stay on the good side of the person drying your hair. 

Should you live in a multi floor house, an intercom would be ideal.  I don't have an intercom, so I improvised with a bell that another friend lent me.  I can't say that the bell was welcomed by my family, but it did the trick.  In hindsight, I shouldn't have performed response time drills with it before the surgery as they were quite over the bell by the time I actually needed it.  Go with an intercom if possible, or move to a one level home.  My next surgery could be a bell removal, so don't do what I did.

I would also advise having a quiet zone to go to.  Over time, you and your caregivers will need a break from each other.  Probably not within the first 48 hours, as it was in my case, but at some point during the first couple weeks.  I'm a bit of an introvert when it comes to my personal space and have never felt the need to be constantly near other people, so I didn't last long before trying to escape the company.  I don't like being hovered over, especially when playing solitaire, yet it seemed like there was someone 2 feet from me constantly.  It was difficult for me to be quietly polite about that, but I managed. Especially since I knew that hurt feelings could cause disastrous hair styling results for me and a sharp decline in meal presentation.  I'd suggest enforcing quiet hours from the start. 

Finally, go with the roller coaster of emotions.  My emotions have been running amok and it's not unusual for my moods to change faster than a Nova Scotia weather forecast.  I can have sadness, fear, relief, anger, frustration and defeat all in a 30 minute time span.  No amount of consoling, comforting or reasoning seems to prevent the multiple meltdowns, so you're basically stuck riding it out.  Stock up tissues and alcohol. 

One more thing - stay medicated, my friends.

2021

Well, here we are at the start of another year.  I'm quite certain that the entire world was eager to usher 2020 straight out the door and embrace the hope that a new year brings.

It's been an unprecedented, cruel and surreal twelve months for many people.  For myself, it was definitely a long year that was often filled with grief, fear and uncertainty.  

I spent last New Year's Eve alone, worrying about my upcoming mastectomy, worrying about the prognosis, worrying about my ability to keep a roof over our heads, and worrying that maybe I was forgetting to worry about something else.  I spent this New Year's Eve alone as well, as most of us did. The difference was that I didn't have a thing to worry about.  Best New Year's Eve ever!

This past year brought a lot of tragedy, but it brought some good as well.  I realized just how much my friends truly cared about me, and they overwhelmed me with their love.  I had constant visits, calls, texts and deliveries last January and I truly believe the love helped me in my healing.  My mental health also got a boost from all of the good energy I was surrounded with.  

I lucked out in the cancer department as well, and the sense of relief overshadowed all of the other 2020 bullshit.  I may be missing a breast now, but that's a small price to pay in my opinion.  I belong to a few online mastectomy groups and reading the stories of other has given me huge appreciation and respect for what some of these women have gone through.  My own battle was no walk in the park, but compared to many other breast cancer battles, I really did have luck on my side.

This week will mark my first year since surgery.  Four more years to go to be considered cancer free; one more to go before I'm allowed to get my tattoo, and 9 more years of medication.  Not that I'm keeping track.  

My family is keen to celebrate this milestone and have already stocked champagne in the fridge.  I'm not quite as keen as they are to have a celebration of any kind. I'm terrified that being overly optimistic or celebratory may jinx things.   I realize that may sound crazy, but it's one of my lower levels of crazy and therefore, perfectly justified. 

From the moment I heard the word "cancer" in my diagnosis, I've been purposely not getting too excited about anything.  I'm content and I'm happy, but never excited.  I'm far too aware that at any time the rug could get pulled out from under me, so it feels wrong to be too optimistic or celebratory just yet.  If I make it to the 5 year mark, that's when you'll see me excited.  If I get to 10 years and no longer have to take medications that kick my ass on a daily basis, you'll see me ecstatic. 

Until then, I'll continue to go with the flow.  Very cautiously optimistic, yet still scared enough to do anything to mess things up.  I'll put up with the side effects the best that I can, but I'll apologize in advance to those who need to be around me.  That stuff really does kick my ass.

Welcome 2021 ! Please come in, sit down quietly and don't touch anything.  

6 months in

It hardly seems like it's been almost six months since my surgery. I've had that time to recover, reflect and regroup and to connect with people I haven't seen or talked to in a long time.  The many phone calls I received and the almost nightly online chats were a very welcome distraction.  The conversations kept me going and made things a lot easier to manage and a lot less lonely.

It seems though, that inevitably, somewhere in each conversation I'm asked "so, how are you doing"?  My standard answer to that is always "I'm doing okay", because in the grand scheme of things, I am. Generally, the follow- up question is about cancer and how I'm dealing with it. Again, I answer with "I'm handling it okay", because I don't know what else to say.

It's difficult to verbally impart how I really feel, as it's quite confusing.  For the most part I really am okay, because I'm still here and still standing.  On the other hand, I'm not totally okay because I'm living with cancer. It's a bit of a conundrum. Some days I'm better than okay, some days I'm not.  I have calm days, trainwreck days and self- pity days.  If I find myself confused at that, there's no way I can expect anyone else to understand.

I can't explain that there's this feeling of perpetually walking around a land mine, because I am constantly afraid of recurrence.  It's hard to work that into a conversation. Besides, my therapist tells me that's a rather unreasonable way of thinking, so I just don't say it.

I recently came across a blog by another cancer patient that validated this feeling.  She described her fear of recurrence  like having a gun pointed at the back of her head. There are equal odds whether the gun is loaded with another cancer bullet, or if the safety is engaged. Like a chant, it whispers "Go live your life, pay no attention to me. Do all the things you'd normally do. I'll just quietly stay right here. I may go off, I may not. But don't worry about it. Much."  I think that's the most accurate description that I've heard so far.  Again though, it's not a great conversation starter. So I don't say it.

When I'm asked if things are getting back to normal, I usually reply with "pretty much".  But there is absolutely nothing that's normal anymore.  The side effects from my medications aren't normal.  The surge of emotions that suddenly attack me without any warning aren't normal.  I can no longer physically do some of the things I used to, and watching other people carry out my tasks certainly isn't normal.  I have a drawer full of prothesis breasts, which is definitely not normal.  None of these things make good phone call topics.

Then there's the next most asked question "you're going to get reconstruction later, aren't you?".  I have no desire to undergo any unnecessary surgery in the future. I've thought a lot about this, and it just doesn't seem like it would be worth the process at this stage of my life.  I'm leaning toward having my daughter design a really cool, bad-ass tattoo instead. So, my answer to the question is "I'm not sure yet", because people don't understand why I would turn down the chance to "feel normal" again.  Although it's mostly my guy friends that don't get it, so there's that to consider, I guess. 

. 

The other thing I get asked a lot is whether I am considering being an advocate for breast cancer awareness.  I have no intention of it.  I've advocated, fought and educated for too.many other close-to-home illnesses, I'm not interested in doing it again.  I also not up for verbally explaining that to anyone, so I don't tell them.  I just say "we'll see".

I'm starting to feel a bit guilty fibbing with my answers, but it's just too difficult to explain some of these things.  It's easier to give the expected answers than to reveal the weirdo that I truly am.  

These Tears

I've never been much of a crier, since I never thought that tears did much good in the end.  I'm not saying that I never cried, I just didn't do it often or easily.

I could always count on one hand the number of times I cried in the run of a year.  Yet, it's only the end of April, and more tears have escaped my eyes this year than I can number. I still don't find that they do much good, but I'm unable to stop them.

In the past 6 months, my emotional armour has been assaulted to the point of breakage.  There had already been a few dents in that armour, but one doesn't live half a century without a few dents.

The latest barrage of assaults took those dents and punched holes in them.  From an unexpected cancer diagnosis and mastectomy; dealing with life in the new COVID era; to the shocking killings of 22 innocent people in my province, tears were shed in abundance. 

Cancer softened me up some, enough to allow tears on a  more regular basis. The medications cause emotional swings, so that also contributes to the crying. And I currently hate my hair.  My armour didn't stand a chance against all of that.

Tonight's tears are different. As I write this, my eyes are again filled with tears. Tonight's news of a downed Cyclone from HMCS Fredricton has my heart in tatters.  There is no confirmation yet of the outcome, but I know each and every member of that Air Detachment, and consider many of them my friends.  I am worried for their well being and that of their loved ones. Tonight I can't hold the tears back, so I won't even try. These tears are unstoppable anyway.  I cannot fathom the thought of an unpleasant outcome, yet I can't discount the possibility. 

So tonight, I will cry.  For the friends that I care about, for their safety, for their souls. This time, I know I'm not crying alone. 

The Best Outcome

Late last week, I received the news that I will not need chemotherapy for my cancer treatment. I'm not sure what the oncologist had tested for, but whatever it was, my numbers were low enough that chemo wouldn't be of any more benefit than the immunotherapy treatment. It's a lot easier to take a pill than go through chemo.

As a Capricorn, it's often hard to find my "inner child", but I literally skipped down the sidewalk of the hospital that day.  My sister was several feet behind me, unsure of whether to join me or pretend she didn't know me. Fortunately she chose the former.  

The relief that I felt is indescribable. I'd gone into the appointment expecting the worst and ended up with the best outcome I could hope for.  For the next five years, my chances of recurrence will be slightly higher than the average person, but the specialists seem very pleased with how everything has gone so far.  I can't explain how devastating the thought of losing my hair was. I know that's not what the big picture was about, but I'm really happy I don't need to endure that.

I still have a lot more to deal with, but knowing that chemo isn't included in that is a huge boost.  The immunotherapy drug is causing a few inconveniences like nausea, tiredness and hot flashes (on a scale I didn't realise existed).  The nerve pain medication causes fatigue as well, but it's starting to work and gives me plausible nap excuses. Overall, none of these things are insurmountable and my hope is that it all eases up as my system adjusts.

My return to work will have to wait a bit longer as I'll need to have frequent lymphatic massage appointments to help with the edema, and weekly physio to regain full range of motion in my arm. There's also the counseling sessions to help me deal with the new reality of my life, but I think these are all pretty good trade offs for the chemo. So for now, I'm too busy to go back to work.  

This outcome (so far) makes me feel very lucky. Anyone who knows me well also knows that my name and "luck" usually are never in the same sentence.  This time, luck was on my side. From the initial pain that I shouldn't have had at that early stage, to the fact that the tumor stayed in situ and the break on treatment, I truly feel like I had a protective force around me.

Aside from luck, I believe that positivity manifests what is needed. I'm not known to be an overly positive gal when it comes to my life, but I really had a lot of backup for this. The abundance of positive messages, texts, gifts, visits and support from my huge army of friends and family played a big role in getting me through the hardest days I've ever faced. There's no way I could have stayed intact if I'd battled this alone, thankfully I didn't have to. I love and appreciate each and every one of these friends more than they will ever know and will never forget their kindness. 

Now if someone could find me a mask, some Purell and a roll of toilet paper, my damaged immune system would appreciate it.  The only Corona anything that I want to deal with is the kind in a bottle that goes well with a lime wedge.

The Good, The Bad and The Ugly

My post surgery appointment went amazingly well.  The tumor ended up being half the size of what appeared on the mammography images, and was only 2 centimeters.  No lymph nodes were invaded and no other surprises were found during surgery.  Radiation is not necessary and I appear to be a good candidate for hormone immunotherapy rather than chemo.  My oncologist will make the final decision on that later this week. She has opted to send a pathology sample to California for further testing to ensure that immunotherapy will be enough. Better safe than sorry, so my fingers are crossed again.  That's the "good" part (except for the agonizing waiting).

The "bad" part is a little more complex.  I ended up with neuropathic pain from some nerve damage under my arm, but that is not uncommon with lymph node removal.  The meds they gave me for that ended up causing fluid buildup under my arm, and I'm now on medications to combat this new wrinkle in recovery.  My nightstand is covered in prescription bottles and it's messing with my feng shui.

There is no way to accurately describe the pain from fluid buildup, but it's almost like the skin in that area has third degree burns.  Add in the 24/7 nausea from the nerve pain medication, and the stabbing pain in my armpit from the nerve damage and you may get the picture. 

Honestly, I'm already tired of all of this post surgery nonsense and pain.  I really can't envision having to also endure chemo.  I've had seven weeks of nonstop pain, and I'm ready to admit defeat.   I just can't see myself being strong enough to go through the effects of chemo.  I'm already wanting to just say "to hell with it" and take my chances.  I won't, but it's tempting. 

Don't get me wrong, I'm truly grateful for the good results, but my "Eeyore" tendencies have pushed my mood as far down as it can go. 

The ugly part is that I'm still struggling with the new normal that my life has become.  I know that adjusting will take some time, but I'm impatient to just feel like "me" again (and a little uncertain as to what "me" actually will be, because it sure won't be the same).  

I'm also struggling  with what I want to do when this is all over. I enjoy my job and I miss it, but I really think I'd like to do something where I can help people and make a positive difference to their day.  I no longer seem to have the wherewithal to spend my days doing the same things over and over, and feeling no sense of accomplishment.  This has been weighing heavily on me, and it's difficult to make a decision between financial security or personal happiness.  

Between the ongoing physical pain, the emotional back and forth and the mental worries about my future, I feel like I'm in the middle of a gunfight armed with a dull butterknife.

I envision this good, bad and ugly as a showdown between mind, body and spirit.  It wasn't one of the things I'd expected to battle, but that's where things are these days . I arrived at this showdown highly unprepared and woefully unarmed.  Hopefully I can dodge the bullets until I can at least find a better butterknife. Or water pistol.

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.