It’s been nearly 5 months since my diagnosis.
It’s been 4 months since my mastectomy.
It’s been 3.5 months since my fertility treatment.
It’s been 3 months since I started chemo.
It’s been 4 weeks since I shaved my head.
The scars from surgery are fading. I’m nearly half way through the duration of chemo. A fair amount of time has passed since this all began, but the remaining time I have left for treatment still continues; and I couldn’t wish any harder for the finish line to come closer.
During the first few months, I struggled with a lot of things being thrown at me in one go, and I found the blog and Instagram account a place for me to share the updates. It was much easier for me to redirect people to one place. It lessened the need for me to answer the same questions over and over. It was also a place that allowed me to have an outlet to express myself. I wrote how I felt, and wrote as honestly as I could. It became easier for me to have people read what I was feeling and thinking, rather than talk face to face. It was more therapeutic than I imagined it would be.
In between appointments, and work, and tests, I didn’t want to have the time to record and repeat in person. I just wanted to live my day to day and have normal conversations. I wanted to keep myself occupied with some form of “normality”. I wanted to see my friends and family and just do my life as best as I knew how. I wasn’t at work, but I had used my new found “free time” to do things around the flat. To meet people for lunch. To watch the occasional series on Netflix, but to also learn and do new things. Calligraphy. Pottery. Puzzles. Knitting.
“You seem to be doing really well!”
“You look great!”
These are all things that have been said to me over the last few months, and for the most part, it’s true. I am probably more content than I imagined I would ever be, and I have surprised myself with the ability to just live. It’s something that I just lost over the years. So to finally be able to enjoy “life” has been a weird blessing out of this whole thing.
However, if there is one thing that becomes prominent when going through treatment, it’s the process of actually “dealing” with chemo. Things just start to slow down, and that’s when the challenge of managing your day to day begins to creep up on you.
The side effects
When I had spoken to people that had gone through chemo, I always heard the same things. It will be hard. The side effects will take its toll on you. You may get really bad nausea. You hair will fall out. Your weight will fluctuate. All physical items which I knew I had to mentally prepare myself for.
As each chemo came and went, the side effects would arrive, and to the surprise of myself and Suzy, I was actually coping ok. In comparison to others, I wasn’t suffering from nausea. My hair (despite thinning out) was still there. I had heard stories of other women that had been hospitalised during chemo. Women that couldn’t get out of bed. Women that couldn’t eat anything. And there I was, dealing with the first week post chemo, but other than that, I was coping. After all, this is what I, and everyone knew. I am a coper. I am strong. I am a fighter. So in the grand scheme of things, I was “cruising” through the side effects pretty well.
Then two weeks ago I hit the wall, and chemo just suddenly became harder.
Out of all the side effects which has been consistent since chemo started; it has been fatigue. For someone that has been struggling with sleep since diagnosis, you would think that being tired and sleeping all day would mean my body is getting enough rest. The reality is, chemo depletes me of energy constantly, and I struggle to do the littlest of things.
I’ve fallen asleep on buses without realising. I’ve been at home during the day, and within 5 minutes, have had to go to bed for 3 hours. I have woken up at 2am on my sofa, having not realised I’d fallen asleep at 6pm. I have been exhausted from just walking to the shops 5 minutes away; and have been short of breath from it.
Weight bearing exercises, like walking, are meant to help offset the fatigue, and also prevent the chances of osteoporosis (oh yes…chemo weakens my bones too!!!). But, with the cold weather; the flux of colds and coughs coming at me; being outside and walking has not been an easy task. One; for fear of getting ill, but two; because I physically find it tough. Never did I think I would struggle with walking for 10 minutes at a time. It’s a weirdly scary and frustrating feeling to know what you were capable, and what you are physically capable of now.
The immune system
To add insult to injury, chemo itself has a way of killing off all cells in your body; both good and bad. The immune system itself takes a battering, and the most important thing is to keep an eye on your white blood cell count and neutrophils.
The medical team had told me that my immune system would be weaker in my second week, and if the white blood cell count or neutrophils were too low, it would potentially risk the chances of chemo being moved out to the following week. Bottom line is, I would not have a strong enough immune system to fight off any infection; which could become life threatening.
To those that are coughing, sniffing, with any fever, please be cautious. These are all things that could get passed on. For the majority of us that have the full white blood cell count, you are good to go, you can have the immune system to fight these slight things off. For me, not necessarily.
For anyone wanting to visit, please do so without a cold or cough. It sounds so small, but it really makes a difference. For anyone that is around me, please be aware of what you touch. Use hand sanitiser. Wash your hands. If you’re not sure, just ask me; but just know that I am more prone to infection than you are, and the littlest thing could end up being something more.
Every time I’ve had the slightest sniffle, or cough, I have been paranoid. I’ve locked myself away, taken lemsip or cough medicine, and fought it off. For every chemo session, I have, for the most part, been able to get back to full health. However, in the last three weeks, I’ve had a cough which I’ve been unable to shift. I’ve been on antibiotics; I’ve been in quarantine; and this is where I have hit the wall. Where all I can do is sit and accept my new role as resident hermit.
I’m a people person. Always have been. Always will be. I get energy from being around others. I like interacting. I like laughing. I like being around people. However, when you are struck down with any slight illness, you need to take a back seat.
Over the months, I’ve become used to being indoors as it is winter time; however, when the interaction is reduced based on infection, that’s when things just start to get me down. I’m now “in” the cancer treatment phase where a lot of what I can do is to watch from afar. I see it everywhere. On Facebook. On instagram. Via WhatsApp groups. Through phone conversations. It feels like I’m in a spectator’s sport, watching the world go by. Or a substitute in a sports team that watches the main players in the thick of a game, while I sit there on the side line for my turn to join in.
The week days are the toughest, as most people are at work. I’ve tried (and successfully for the most part) to keep myself busy. Whether it is through craft work, pottery, or reading; but like most activities there is a point where that starts to lose it’s momentum, and your mind starts to go into overdrive.
Physical vs Psychological
Out of all the aspects of going through treatment, the biggest challenge for me has been psychological. I’d been warned that half way through treatment it would get tough, and boy were they right.
Sometimes I wake up and look at myself with my shaved head, and I think I look like a badass. Other times I try on clothes and get upset over the fact I can’t fit into items because my weight has gone up from the hormones and steroids.
I will feel my body ache, and parts of my joints throbbing, as this is a side effect of the immune booster injection I take after chemo. I’ve become used to it, as it’s part of my current “norm”. Then I’ll sit in the clinic for my fourth/fifth/sixth injection, and I will still get teary and cry as if it was the first biopsy all over again.
There are times I will cry, because I’m dealing with another hot flush, or because I haven’t spoken to someone, or seen someone I wanted to. There are times when I’ll not want to talk to people because I can’t deal with it.
Dealing with side effects is a confusing thing, for me and for others. Sometimes, I just accept it for what it is, get up and carry on with my day. Other times, I just feel low.
Before chemo, the pace was frantic, but it kept me going. Kept me busy. Now chemo is in progress, things are slower. I have more time to think. I have more time to get lost in the void that is self pity and frustration. I have to get used to the quarantined state; I have to get used to people not being as available as I thought they would be. I have to get used to a lot of things.
So as I adjust to this phase, I keep at the back of my mind that I could really have it a lot worse. I could be one of those women who is bed bound. One of those women who can’t retain food. But as I’m not, I try to accept that it’s ok to not be ok. And for now, despite not dealing with chemo well, I’m slowly working through each one, and getting closer to the finish line as best as I can.