• carrie berry

2 Years Post Chemo Reflection


I feel sad, and angry, and exhausted, and I don't really know how to write this because I so wanted this to be a happy report of progress. I was 2 years post chemo back in July but it’s already October and I’m still figuring out the words. I am completely healthy, don't be mistaken, but my life is far from back to normal, and my cancer chapter is far from over, which sucks more than anything. I have to take many deep sighs of grief before I can start formulating my multitude of tangled thoughts and typing these words, because the past 2 years have quite literally been the most difficult of my life despite a complete recovery, even more so than during my active treatment.


To start with some positives, my hair is extremely long, thick, and doesn't show any signs of the cruel dehumanizing stripping away of chemotherapy. My skin and nails (ridges) have totally recovered from the toxins. My body is in its best shape of its life due to extreme diligence in consuming over 30g fibre per day, no alcohol, minimal fat, and exercise 3-4 days a week. My daughter is now 3 years old and she quite opposite from myself and my husband, has an amazing intellect that way surpasses her actual age. We have just bought a new home and look forward to renovating and decorating a space that we as a couple can have equal creative input into, as opposed to the bachelor pad that I moved into when we got married. We now wake up to tea overlooking the oceans in the morning, and wind down at night to the gentle sounds of cargo boats signing off. Despite the future looking really exciting and optimistic, and at the risk of seeming ungrateful for how lucky I am or being a poor role model to my fellow cancer survivors who may turn to this blog for some insight into the future, I have the only human need to vent about the various problems I have been facing on a day to day basis, things that I wish doctors would give me more compassionate guidance on.


Tamoxifen side effects


I started out with minimal side effects - mainly only joint stiffness in my hands in the mornings. But at the 2 year mark, I had some bleeding between periods and was diagnosed with endometrial polyps that required a D&C under general anaesthesia. I was a bit terrified at the prospect that it could be cancer, or that some random surgery could be my demise, which is silly but also totally possible in my cancer warped mind given my long stroke of bad luck. After the surgery, my OB told me that there was one big polyp and multiple small ridges indicating that many others were growing. Pathology showed that it was benign, but there's no saying if and when more polyps would show up again, which is now a huge source of anxiety for me. Despite having been through so much medically speaking, surgery and the experience of being "put to sleep" still terrifies me. Post cancer, I also find it difficult to stop being pessimistic. Even though only a small percentage of people will have recurrent polyps forming frequently, I immediately associate that myself with this statistic, and dread will tend to suffocate me because according to the doctor, there is nothing I can do to change this outcome. In my experience, when someone says “there’s nothing you can do”, that’s first of all usually not true, but its also the most depressing feeling in life when all you want is to be in power and control.


Insomnia


I have just "recovered" from my third bout of serious insomnia. When I say its serious, I mean its over 3 days of zero sleep, recurring non stop until I go to therapy. This time I couldn't secure an appointment with my psychologist until 3 weeks later (seriously, how much business does she get in this sick sick city?), and I had to resort to a timed release ambien (sleeping pill) for 2 weeks, which works extremely well I must say. Not one to enjoy drugs, I now understand how one could get addicted to them. After one very expensive session, my therapist told me that basically I am so entirely consumed by my multitude of health issues that I'm left sleepless at night by them, because my life has become utterly and totally boring. Nights out, dates, movies, travel, shopping, girls nights, have all been sadly replaced by motherhood, something that I'm no doubt blessed with but do not really enjoy in its entirety, which has left my brain emptied out and refilled with the only drama available at the moment - cancer. It was like a lightbulb turned on for me, and that night, I slept like a baby.


Having my cancer diagnosis come concurrently with motherhood is probably something many others experience too. Though I know of the problem now, it's not easy to just fix this. My therapist prescribed frequent date nights, light drinking, and spontaneous activities to cure my insomnia, but this is easier said than done with a 3 year old. I have to make active efforts to stay excited by my life and my friends and my spouse in order to just stop going down the rabbit hole of death, which sounds so ridiculous and far away from the old me. At the end of every week, I have to sit down and plan activities for the next week, and time slots away from my daughter, just to be sure that mundane motherly obligations don't consume me into negative thoughts again. I’ve learned that how much you want to be a mother, has nothing to do with how good of a mother you can be. And that how happy and healthy your child is, also has nothing to do with how good of a mother you are. A good mother, first and foremost, must be a happy one.


Fears of recurrence


Aside from actual real health problems (not too many I'll admit), the perceived and possible health problems are constantly shadowing me. I've recently gained a cardiologist due to constant chest pains after exercising for the past few months. After a bout of chest pain after strenuous running one day, I had a total panic attack at the hospital when the GP told me that frequent chest pain is highly abnormal and criticised me for not seeing a cardiologist sooner given my history with chemotherapy and radiation to my left side (both of which are known to cause some level of damage to the heart). He did an EEG where I sort of cried a little to the nurse while she told me I needed to calm down if I want the test to be accurate, then a blood test of my heart enzymes to see if I was having a heart attack. What the total fuck. Well it turns out I was not having a heart attack, and after many expensive tests, I have been diagnosed with strained muscles and likely inflamed cartilage from over exercise. I asked the cardiologist to please ultrasound my heart and he wouldn't even do it. Instead he asked me the million dollar question that only the most caring and holistic kind of doctors will ever bother asking, "how are you sleeping"? Insomnia, you see, unbeknownst to people who do not have insomnia, is most likely a sign of ANXIETY, which unbeknownst to people who do not have anxiety, is a strong factor that could manifest into a multitude of physical symptoms such as pain, nausea, fatigue and more.


Another perceived health problem of mine has been my constant daily headaches that once were caused by severe iron deficiency anemia. When it recurred again and again, I assumed it was my lack of iron intake again and I tried to fix it by supplementing heavily. I was extremely surprised when the night of my awful imagined heart attack, blood tests showed that I had sufficient iron and was not anemic at all. After going to therapy and sleeping like a baby, I also surprisingly came out the other end with no more headaches, only to learn of such thing called anxiety induced migraines.


Loss of companionship


I think this one hit me the hardest of all.


Every time I focus focus focus on the positives, meditate, be grateful, ignore the noise…someone dies. Or someone gets diagnosed with a recurrence, or even worse, gets diagnosed with a metastatic recurrence, which means they will never be fully cured. One of the first breast cancer patients I followed on Instagram, my idol in bald girl fashion whom I meticulously studied and copied with my wardrobe, passed in June. I haven't stopped thinking about her, and how she appeared to be enjoying her life so much despite battling a metastatic recurrence in secret. The problem with being so connected to the cancer community online is getting too much information, and staying too close to the issue. Those who choose to stay offline or not be involved probably just strode ahead with their lives not looking back at this blip in the radar. I've spent many months in 2021 mourning the loss of several beautiful women I've followed diligently for 2 years. I knew almost everything about their journey, and at the end of it all I unfollowed them. Because they’re now dead. And that only reminds me more that I too, could be dead. My addiction with social media and curiosity of other people's lives is unhealthy, unrealistic, useless. I don't think I've managed to kick this habit completely, as I still sneak peeks at my fellow breastie's pages even when I don't follow them (I literally know their handles by heart). One step at a time, my goals are moving towards self awareness, self protection, self preservation, offline, analog, silence, thinking hard and digging way way way below the surface, living in the moment.


Mastectomy scars


After my mastectomy in April 2019, there is a long scar on my left breast and an imbalance of perkiness between the two sisters. I’ve seen a plastic surgeon and since 2019 have been meaning to have corrective surgery to come out of this misfortune with the best rack of my life. Many breast cancer survivors have multiple surgeries to make sure there is no sign of what happened, and no loss of femininity. Despite spending my whole life BC (before cancer) obsessed about my breast size and looking forward to wearing backless braless dresses in the summer, some things were holding me back. Like the fact that breast implants require a drain to be inserted in your armpit and you need to empty the blood every few hours for 10-12 days; and the fact that I can’t hold my daughter for those days and more following it; and the fact that my breast with the implant is always cold to the touch and has zero sensitivity; and the fact that the regrown nerves heal in such a wacky way that if I touch a spot on my ribs, I feel an itch inside my breast; and the fact that the implant is so foreign and thick that I can no longer feel my heartbeat; and the fact that when i think about surgery I can actually physically feel the sting of the propofol entering my veins and taste the familiar metallic taste of the drug in my mouth, ptsd is no joke. So much time has passed and one day my husband told me, “I don’t want you to do it”. I didnt realize I had any pressure to look perfect, but that moment was probably the most relief I had felt the entire year.

It’s true what they say - When peace is your highest priority, your choices become more clear.

Right now at this moment I feel good and safe and strong. The uncertainty of my mental health for the next moment is something I’ve learned to embrace and appreciate immensely. Knowing the next moment could be a shit show makes me so much happier when I’m at peace. If I could offer any constructive advice to anyone, it would probably be to go to therapy. Don’t underestimate negative thoughts and anxiety, these storms could quite literally sweep you off your feet and land you somewhere you don’t want to be before you even realize what’s happening.


Now I will tread on and as Christina (RIP beautiful) used to say, just keep fucking going. I hope my next update will be only get better!


xo


Carrie

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