Honesty On Living With An Ostomy

After nearly a year with my freaky friend – Bennie, the stoma – was evicted. And for damages done to the property, his deposit was not refunded.

Even after a two year period where the entire world went into lock down as a result of a pandemic and people seem to want to duel to the death over toilet paper and vaccinations, I can say, without a  doubt, having an ostomy remains the strangest thing I have gone through. Ever.

It is weird to think about, even more weird to look at and exponentially weirder still to feel on your person. It seems like such a little when you physically compare the size of a stoma to the rest of the body. But that little thing triggers such a gigantic change. I only grasped the magnitude of this change incurred as it was all happening.

I had known from the get-go that undergoing the colo-rectal resection in December 2020 there was a possibility that I would end up the bag – if not, probability. The cancer had been in such an area that simply removing it would mean removing a portion of my colon. But honestly, hesitantly googling it, when your A-type personality’s must-know attitude wins the mental argument, does not even begin to prepare a person for what is to follow. This unexpected roller coaster that you were gifted a ticket to ride is fascinating, terrifying, annoying and exhausting all at the same time.

Despite how tough it was, I did learn a lot about my body, my heart, the people who love me and the ostomate community (which is bigger than you might think).

Your whole relationship with your body changes almost immediately.

Everything you think you know about your body and its usual “functions”, for the most part, becomes nil and void, and you start all over.

You are reset to the starting point from which there is no real moving on. Unfortunately, there isn’t much potty training to be done when your new “hole”, for lack of a better word, has no muscles to train.  Whatever your body wants that’s what your body does – whether you are mentally prepared for it or not.

Personally, I felt like I reverted back to the “infant” phase of my life. The difference between myself and a normal baby is that they don’t have the constant burden of self-conciousness and overthinking weighing them down. When changing the bag, I had no control over what the stoma decided to do. We just had to work quick, clean fast and hope for the best when that new bag has gone on. Leaks happened and they sucked.

Insecurity sneaks in SO easily.

The surgeries and the presence of the stoma changed my body, but also me as a person in so many different ways.

I became so conscious of what I eat, because I knew within 20-30 minutes whatever went in would come out. As a result I inadvertently started cutting out some food stuffs along my 12-month journey. The sight or the smell of it made me a little queasy or the feel of it in the bag made me nervous, so I just avoided it altogether after a while. I know my drastic response was not necessary for health reasons, but it’s what I did at that stage to cope.

I got used to the process of emptying and changing, but the implication of the bag stuck with me. I did my best to conceal it. It made me sad to see my body in the mirror – the scars, the wounds, the bag, it is A LOT to get used to, especially when you know that this is pretty much (give or take a bag) how you will be looking for the rest of your life. The only place it really did not bother me was when I was at home, because at home at least I had a measure of control should something happen and I could hide comfortably in one of hubby’s oversized shirts.

I have always suffered at the hands of Miss Social Anxiety. I never much cared for what people think of me as long as they weren’t unkind (either flat out or passive aggressively) about it the whole time. I’ve never thought myself particularly pretty by the world’s standards, which is something I prefer. The nice thing about getting older is that you start to realise that you don’t need the “world’s opinion” in your pocket to be content with yourself.

Having the bag however, magnified the awareness of potential unfiltered unkindness from or unintentional discomfort of those around me. Whenever I went out I felt hyper aware of the bag, and not only because the possibility of a leak in public petrified me. Yes, it saved my life, but I’m not naive – it is not something pleasant to look at it. And if I myself didn’t want to look at it the whole time there was no way I was going to force others to look at it.

I salute all the ostomates out there who are confident enough to where bathing suits and crop tops. How some people gain courage while others’, like my own, gets shattered was a beautifully-tragic lesson to learn. I just shows how we grow in different directions when being broken by a similar blow.

Support, support, suppport.

In hospital, the whole having-a-stoma situation felt manageable. Retrospectively, this is obviously because the amazing nursing staff were the ones doing the “heavy lifting” on my behalf. They knew exactly how it works and what to look out for. I will always be thankful for all the nursing staff and the ostomy sister that I met during this time. They love what they do and they loved me during a time when I was battling most to love myself.

When I was finally able to go home, I truthfully, I was not the most graceful and independent of ostomates, There were multiple woe-is-me periods last longer than it probably should have. I do lay some of the blame or the turmoil on the fact my body was still recovering from major trauma and the lack of proper sleep that came with being constantly worried about leaks.

Thankfully, there were some more angels. I am fortunate enough to have a registered nurse friend who was willing to donate her time and passion to helping me conquer those early days.  And then a husband, who I am convinced has a heart made of solid gold, to support me through the next part. Both of them lent the kindest of helping hands without giving it a second thought. I learned that not all the ostomates have the support of loved ones and that is heartbreaking and infuriating.

If you are reading this and you are one of those going it alone your entire being is made of the purest diamond – don’t let anyone or anything tell you otherwise. There are probably lots of unseen loads of washing, public bathroom panics and tear-soaked sleeves, but I hope you know that there are people out there who are so incredibly proud of you even when they don’t even know you. You manage get up each time and do it again without fail – and for that alone you deserve medals of perseverance and quiet grace that the entire worlds supply of money can buy. You are so much stronger than you think.

If you are reading this and you know someone with any kind of stoma, PLEASE be kind to them. It’s hard. Whether they chose to get a stoma in the hopes of improving their quality of life or it was a medical emergency, they could not possibly know how hard it would be.

Little Anchor

We recently went to a jeweller to have my wedding ring cut off… a spell of dehydration caused some water retention that turned my fingies into nice pork sausages.

The idea of cutting it caused me some heartache and anxiety, which is silly (I know). It was very uncomfortable and somewhat painful. We knew we had to cut it off before it became an “emergency” situation, so we did.

I had put it off as long as I could, hoping we would not have to damage it. The hesitation was not only because of the sentimental value. My hand being bare for a couple of weeks and a slight alteration in the ring’s make up was in no way going to have any detrimental effects on to our relationship.

Although I sometimes need physical token to remind me to do certain things. A sticky note to remind me to do a task or an alarm to be on time for an appointment. I don’t need to have my wedding ring to remind me to love the man I gave my heart to because that just comes naturally.

The first couple of days my hand looked and felt weird. It didn’t have any significant effect on my every day life, but it’s absence made me sad. It was only the day or so after the ring was gone that I realised why…

Since I physically could not get it off my stubby finger, the small band of white gold and diamond that lives on my ring finger, had been with me through EVERYTHING. It was on me when the first symptoms showed up. It was on me during the first MRI scan and the diagnosis. It was on me during every hospital visit, theatre trip, radiation session and follow up appointment. It was on me when the next milestone seemed impossible to reach. It was on me during the period of victories.

Without consciously deciding to do so I used my ring as a bit of a security blanket and a fidget toy. A little anchor to bring me back into the present. It gave me something to focus my fingers on while I worked on reigning my thoughts and emotions in.

It was a little constant during a very blurry and changing period of time. A tangible reminder of the unbreakable support system I have been fortunate enough to have on my journey. A silent prompt to assist in keeping my heart thankful and my chin up even during the hardest and most uncertain moments.

I think maybe I needed to be without for a bit to remind me that ring itself wasn’t the anchor. And its brief holiday didn’t mean I was removed from my real Anchor. It was still, as it had always been, just a physical representation of the intangible.

The true Constant never let go of my hand. My unwavering Comforter continued to support me. The One who holds me up, when I falter in strength or error, still fuels my gratitude as He wills the breath in my lungs and the beat of my heart daily. Nothing could or would change that.

An Impostor Among Us…

For the last couple of months I have been grappling with some pretty big self-doubts. Having survived and conquered the cancer mountain has left me feeling like I am operating in existential limbo. Everything has returned to a relative state of normalcy, but I no longer feel normal.

With everything that changed, I don’t seem to fit in any of the roles my former self were comfortable in, and I find it hard adjusting to new ones that I thought I already embraced. 

I used to be confident and comfortable in my role as accounting manager / audit supervisor, but I don’t feel like I no longer deserve either of those titles. Since day one I have worked hard to do my very best. But have the long months of working only part time and living and breathing doctors appointments and treatment / recovery plans somehow stolen my professional experience and abilities?

Much like my professional insecurity, I have an educational one as well. I am a part-time student working towards my second post grad diploma on my arduous journey to becoming a CA. But have the months of resting and recuperating stolen my abilities to take in and apply the information learnt?

I persevered through a horror year after a terrifying diagnosis that resulted in my kicking cancer’s butt. But am I worthy of being called a cancer-survivor when the doctors, who performed the surgeries, and the medical staff, who facilitated the treatment plans, are the ones who did the “work”?

I recovered from the crazy surgery where cancer being removed resulted in my being sterile. I knew what it meant when we went ahead with the surgery. I know fundamentally nothing has changed about my person. But has the removal of that small organ somehow made me less of a woman seeing that I no longer have periods and can’t bear my own babies?

I am wondering if these kinds of feelings are “normal” for everyone who has lived through a trauma, or just faulty wiring in my own mental faculties? And there aren’t many opportunities to bring the subject up… How do you even go about talking about it in an everyday social setting… “Hey, how’s the family? Experienced any traumatic events lately that are causing you to question who you are in every aspect of your life? No? Just me? Cool…” (Awkwardly sips coffee while crickets amplifies the silence).

The transition back to how everyday life was before cancer happened without big fan fare, but it feels different. And I guess, that kind of makes sense – I have changed. It’s like a continuous battle between heart and head. In my heart I know that I still am an accountant, auditor, CA in the making, woman and cancer survivor, but sometimes my head is just like: “nope, not you. You’re none of those things anymore”.

After spending so long in a state of recovery and waiting I have become super accustomed to watching other people functioning in their lives. Watching colleagues who slay everything they do without realising how much I admire them for it. Watching friends (enviously at times) who are much better at balancing their work / study lives than I am currently. Watching mommies all around me who have deeply touched me by how naturally they function as mothers. Watching girlfriends who embody womanhood without looking like they are giving it any sort of thought. Watching cancer, ostomy and other health affected warriors of all ages who have gone through chemo, surgeries, radiation, treatments and recoveries who seem like they are so much stronger than me.

Please don’t get me wrong I am INCREDIBLY grateful for everything I have endured and survived and that things have returned to a relative state of normality. I love my job, I love the challenge of studying, I love doing life with hubby, friends and family. And I’m happy to not be living only for doctor’s visits and waiting in between treatment phases.

I guess I’m just amazed at how complex human beings are. We can endure and survive so much, but you never really know how something is going to ultimately affect you or when the effects are going to “hit home”.

I can’t pinpoint where the strange second-guessing originated, or more, the moment I subconsciously started nurturing it. Now that I am aware of it, I’m saddled with the mammoth task of working through them – resulting in internal debates that can carry on for hours and sometimes even keep me up at night… sigh.

Reigning in and tempering these thoughts and worries are yet another tangent journey I have embarked on because of stupid cancer. I don’t know exactly how to tackle conquering these doubts yet or how long it is going to take, but I do know that eventually confidence in all my various roles will be restored (and stronger than before) and a level of acceptance of all the new parts of me will be reached. Watch this space.

MY 2021 IN NUMBERS

2021 was a strange year for the world at large, and also for me personally – for non-Covid related reasons. We are nearing the end of the second month of 2022 and I am still daily processing everything that has happened since 08 December 2020. I’m on the other side of one of the biggest personal mountains I have ever had to climb. The events and effects of which will stick with me for years to come, I’m sure.

Being an accountant means that numbers are my ‘thing’. Numbers are probably the easiest way for me to make sense of a situation, whether in terms of time, or money, or quantity. And, there is an inexplicable sense of warmth and fuzziness that takes me over when a set of financial statements or a spreadsheet is complete and balanced… So naturally, after the craziness that was the last 14 months, there are still a lot of unprocessed ‘numbers’ floating around my mind.

The concept of ‘gains’ or ‘losses’ in accounting terms are fairly black and white and calculable (for the most part anyway). As the new year rolled on in and the final stretch of my recovery reached a sort of end-point, I began reflecting on everything that happened in terms of ‘gains’ or ‘losses’. These are much more grey than they appear in the finance sections and some of which are in no way numerically quantifiable – more subjective, I guess. But irrespective of what the concepts are called, I have certain ‘losses’ that I want to process and file away under experiences-that-changed-me-for-the-better part of my heart. And on the other side of the spectrum, there are ‘gains’ I want to continue to grow in self-awareness or just spread awareness that someone else can learn from my experience without necessarily having to experience it.

LOSSES

345 days – how long I had my ileostomy

I did not have a lot of time to prepare for life with an ileostomy, and honestly, even if I had I doubt it any kind of preparation would have improved or changed the experience. It was something I had vaguely been aware of could happen, but kind of lived in denial until I woke up with it.

It was a hard transition, specifically after being discharged. In the hospital it felt more manageable as there were lots of amazing medical professionals who lent a helping hand – a much bigger one than I had realised until I got home.

It was a lot to cope with and get used to especially while a large portion of my abdomen was still healing internally as well. I was still sore, grieving and incredibly tired – not at all in a good mental space to deal with how drastically it had changed everything. It changed what and when I ate, what I wore and how I slept, especially at home when it was all up to me.

Instead of befriending it and getting used to it, I became obsessively aware of it at all times, not because it was sore. It was like I had a new, and very demanding, limb that could betray me at any moment. The longer I had it the more I dreaded leaving the house and the more put off I became by certain foods. I was not the most graceful of ostomates (that is a post for another day) as I allowed it to keep me from doing this I wanted to do or normally enjoyed.

I was, am and will always be grateful for what I learnt from the experience, but I am hoping and praying that I never have to go back there…

45 cm – the length of visible scar tissue

From the two long incisions to all the little holes where I was tubed and needled, my body will be marked until the day I die. I’ve never felt like I was particularly beautiful by society’s standards, and with that I have always been fine for the most part. I was not confident, but I was content with how I was created. The undue pressure put on women, or anyone for that matter, to look ‘perfect’ every second of every day has always broken my heart, as it can unnecessarily rob someone of their happiness and uniqueness.

Remembering what my body used to look and feel like in comparison with what it looks and feels like now leaves me insecure and vulnerable in a way that I never was before. Surgeries and treatments don’t really come with a reset button. I want to hide and cover up, even when I know that if it weren’t for the instruments or hands that made those scars, I probably wouldn’t be standing in front of this darn mirror in the first place.

GAINS

Awe at wonderfully the body is made

There is no question in my mind that the human body (or any living body for that matter) is something to marvel at. There are a multitude of different systems and cells big and small that work together in perfect harmony that keeps us alive and functioning. Where there is an injury the body will heal. Where something is lacking the body starts to compensate for it.

Recovering from multiple surgeries and from 6 weeks of radiation was super hard. There were moments when I felt like my body couldn’t take anymore pain or discomfort, but somehow it did. And other moments when it felt like it was never going to get better, but then one day it did.

And, all of that is no thanks to me in any way. I did not create my body nor do I even control what goes on inside of it. I have merely been entrusted to look after it. I will strive to do so as best I can.

Awareness of resilience

I’ve not really been an ‘athletic’ person since I did gymnastics when I was like 10 or 11. When we moved towns I shelved any gymnastics dreams I may have had at that stage and haven’t really found any other sport that I took so much pleasure in. I have done some things casually over the course of my life – tennis, running, MMA, yoga. But I have not really prioritised putting as much energy into my physical being as I do my mind.

It took being diagnosed with cancer and going through a heck of a recovery journey for me to understand the unmatched determination that goes into the work that athletes do. Only now do I understand that resilience is a skill learned, and not a natural talent. It takes an unfathomable amount of inner drive to continue to put one’s body through what feels like endless beatings – whether that is pushing to walk a little farther each day or quite literal ‘conditioning’ kicks to the abs.

I will never forget the incredible sense of triumph I felt just walking a few steps after being too weak to do so only a couple of days after surgery. It was slow steps with lots of support in the beginning, and now a year later it doesn’t feel or look like I had that battle to start with.

50 cm – current length of my hair

I have always wanted to donate my hair so that they can make a wig out of it for someone who may have lost their own due to cancer. It has been a dream, not so much a goal until I found out I had cancer. It was a big worry (which sounds incredibly superficial) that I was going to lose my hair. I have always looked after my hair as best as I could – not using too much heat, etc. Although I did wash it everyday which is not the best. Thankfully, my treatment process didn’t call for anything that was going to make me lose my own hair, that just cemented the ‘dream’ into a ‘goal’ to do this one seemingly small thing for someone else. It won’t change their journey or lessen their suffering, but it is a little positive that could make them feel a bit better when they look in the mirror.

Because of what my hair could potentially mean to a stranger, I am taking extra care in looking after it. As I was fortunate enough to be able to stay home (and not see anyone other than hubby and furbaby for days on end) I was presented with the golden opportunity to start training my hair to go without having to wash it everyday. I have gone from once a day to two / three times a week. I want to let it grow out for another 6 months or so before chopping it off.

Little ones

Little hands, little feet

Little people we’ll never have the chance to meet

Kind smiles, kind tugs

We’re counted out from a lifetime of hugs

Never were, never will

The futures we hoped for forever frozen still

Ever mourning, ever enduring

While the dreams for you start slowly obscuring

Silently watching, silently aching

For what comes next to lull this heart’s breaking

Little dark, little night

Laying down those faces that’ll never see the light

A Legacy

As human beings, I think anyway, we all have an inner need to leave a great legacy after we are gone. For some, their idea of a great legacy is being remembered by thousands for their accomplishments, while for others it’s just to make sure the ones they leave behind know that they were loved. Neither way is right or wrong.

A legacy can, in the literal sense of the word, mean the inheritance left to loved ones to cover funeral costs or debts or just make sure that they are looked after during their time of grief. But also the personal imprint we leave on others. This abstract definition of the word legacy is the more important and lasting one. Money can be gone in the blink of an eye, or a house can burn down, or a car stolen, but no one can ever take away how special someone made you feel or how you know that they loved you.

A couple of years ago my best friend, Anélde, begged me for months to listen to Hamilton (the award-winning Broadway musical written by Lin-Manuel Miranda). She knew I would love it, but I, like the noob that I am, kept putting it off by justifying that I am not the biggest fan of hip hop music. Thankfully, I finally caved and started listening to it – I fell in love with it instantly and have lost count of the times that I have listened to it over the years.

The show tells the story of Alexander Hamilton as he goes from an orphaned boy to one of the founding fathers that revolutionised America’s early history. One of the golden threads throughout the show is Hamilton’s desire to leave a lasting legacy. During the song The World Was Wide Enough, Hamilton says the following: “Legacy, what is a legacy? It is planting seeds in a garden you never get to see” (2:12-19).

This line hits me right in the feels. EVERY. SINGLE. TIME. It sums up, so beautifully, what a legacy is, what the impact of it is, and also how others carry on our stories on our behalf.

I can recall only a handful of times in my life that I casually considered what I would leave behind should I die young. I knew my story would not be one that the world regaled generations with. But when I faced the uncertainty of my own mortality it really hit home – what am I leaving behind should I lose this battle to cancer? How many of my goals would go unattained? How many of my dreams would forever be unrealised? Do my husband, friends and family know that I love them and how grateful I am for them? Would there be anything that I regretted not doing or saying?

It was such a kick in the shins to consciously start doing the things that I want to do. We all only have a certain number of days and at no point should we waste it by doing things that we are not passionate about, or missing out on the things that we are passionate about, forcing ourselves to fit into others’ moulds.

There is an example of a legacy that I carry with me for all my days, and especially now that I find myself in a similar situation.

My granddad passed away in 2011 after losing his own battle with cancer. He was one of the strongest and kindest people I have ever met. He was the patriarch of the family, and not in the negative way that that word is more used for nowadays. He was the father of the family. He made sure that my gran was looked after, after he was gone. Everyone who met him loved him for his genuine heart and sweet spirit. He was always ready with dad-joke, but also ready for real-talk with anyone who needed it. Him passing on left such a big hole in a lot of people’s hearts, a hole that will never ever be filled again.

I used to, and always will, admire his ability to fight, but back then I could only sympathize with the pain and struggle he endured. His battle was much bigger than my own, but after my experiences with the surgeries, the time in hospital and the radiation I feel an overwhelming amount of understanding and empathy for the glimpses I had into his fight. I have also hoped that I could emulate his strength in my own battle, because I want to make him proud.

Man, I wish I can video call heaven for a bit just so I can talk to him:

– tell him how much I respect him for keeping his loving kindness and his faith no matter how hard it was,

– tell him how much he inspired me by being himself, doing his best and keeping on fighting even when it hurt and nothing helped,

– tell him that I hope I would make him proud by continuing to get up even when it feels impossible to do so.

So when I think about what I am going to leave behind when I eventually do pass, I don’t want it to be a world famous biography or loads of accolades or degrees. I hope that it would just be a legacy that would inspire others to keep fighting whatever battle they might be facing.

I want my husband to be as happy as he can be and also not be stuck paying off my student debt. I worked my butt off to get where I am professionally, but he spent lots of hugs, handed me lots of tissues and made lots of cups of coffee to help get me here. I will never repay that support with a negative balance sheet. More importantly, I would want him to know how he is so truly and deeply loved as my best friend and soulmate.

I want my friends to know that every minute with them has made my life richer because they are in it. I want my family to know that I am who I am today because of all of the time and love they invested in me.

In a world with so much negativity we never know what the seeds we plant will bloom into. It should be our personal duty to make sure that those seeds are light and positive so that those arounds us, and those who come after us, may flourish.

Regression to the mean

We’ve been in the eye of a pandemic for almost two years now. It significantly changed everything in a comically short amount of time, and everything seems to keep changing the more time passes. Even more strange for me, is that it has almost been a year since we found out I have cancer.

All the activities and skills that seemed to come easy, or at least natural, BC – before Covid (and  Cancer for me) feels weird and unfamiliar now. Did we really used to leave the house without masks or bring things into the house without sanitising them? Did I really used to be motivated to live and work out in the world, before cancer, without fatigue or a heavy heart? Why did I allow outside factors to become so significant, and stress me out to the point of having panic attacks?

I find myself wallowing in the slump of abnormality more than I care to admit to those around. It’s impossible not to compare how things are now with how they used to be. The things that weighed on my mind, I know now, were just much easier to plough through, deal with, and move on, probably because they were isolated external factors.

It personally feels like we are stuck in an in-between phase, like a vehicle stuck in deep mud on a road somewhere, the wheels keep turning, but going nowhere.

Matters that caused so much anxiety in the past, like rude clients or unrealistic expectations, I wonder if and how I can allow them to matter so significantly going forward? And then the things I never even thought of as being a factor in my future, like the permanence of possible cancer in my body, how and where do I make room for those things without them controlling my every thought?

I keep (and have for a long time been) waiting for life to regress back to the mean – to even out so that things can move smoothly for a bit without being an upward struggle or a wobbly downward slope.  

But I think it already has – life has regressed back to the mean, but the mean has changed without anyone noticing. Things will never revert back to how they were “before”. The struggle now is not to brace for the storm, but learning to travel through it. Life won’t be uncomfortable forever. Taking care of ourselves while the hail bears down on our structures and the floods tear through our defenses should be the priority. At some point the sun will glimmer through the clouds and a rainbow will smile again. And we will once again be reminded of how things are better now than they were – different, but better…

Early detection is key

September has always had a special place in my heart. Not only is it my birth month, but it is also the start of spring in South Africa.

I am a winter person in my heart of hearts, but I adore the fresh beauty that comes with spring time. Nature is rebooted. Everything that lay dormant over the winter months wakes up. Crisp greenery and pretty flower buds start slowly taking over that which looked dead.

From this year, September carries another significant meaning as it is also gynecological cancer awareness month. I had in the past been vaguely aware of it, but I’m ashamed to say that I probably hadn’t given it as much conscious thought as it deserves until I became part of those statistics.

With cancer, and most other serious illnesses, early detection is so important. If it is caught early enough it can be treated timeously and destroyed to prevent it from spreading. In my case, we found it too late to save my reproductive system, but early enough that it hadn’t spread to other areas or organs.

I used to drag my feet about going to the lady doctor. I still find it incredibly awkward – even though I knew that for medical professionals it’s not. It was just one of those inconveniences where you think, I’ll just put it off since there won’t be anything wrong anyway.

And then I went to the doc for something else, we decided sporadically to do an exam and a pap… and it changed EVERYTHING…

According to all the doctors involved, my cancer case is one of the strangest since it is very rare for someone of my age to have this type: vaginal adenosarcoma.

Adenosarcoma makes up like 4% of vaginal cancer cases. Overall, vaginal cancer makes up a very small percentage of overall cancer cases. The odds of anyone getting it is super slim, and yet here I am.

So my honest advice, as someone who thought it would never happen, is this:

1. Listen to your body. The fatigue and out of the ordinary bleeding that I wrote off to stress was actually my body trying to warn me, for months, that something wasn’t right.

2. Go for those pap smears and/or physical exams, as well as those annual checkups. If you can’t do it for yourself, then do it for those that love you. Trust me, they would rather carry you through the treatments and recovery than lose you too soon.

3. Treat all medical professionals with respect and kindness. If you do your part, they can do their part so much easier. It is for our benefit that they do what they do. I was thankful to have been in the hands of some amazing doctors, sisters, nurses, and technicians along the way.

And as a footnote: if you are not 100% comfortable with a doctor or someone, don’t be afraid of getting a second opinion. It’s your life and your health, and it is important that you feel you can trust the person on the other end of the table/bed.

4. Also DO NOT let your internet browser become your doctor. It will freak you the heck out before you even know what is really going on.

We only have one life. Let’s do right by ourselves and the ones we love by going for those checkups, making sure we get those vitamins and some exercise. And also spread awareness that might save someone else.

Tattoo

Tattoos are fascinating. They are a form of self-expression that helps to tell your story and show the world who you are, while also representing the artist’s unique talent.

Hubby and I had a deal that we would get tattoos once I passed my postgrad diploma, which I did – but then the pandemic struck and we decided to delay it until things settled. And then when we found out about the cancer, we pushed it back even more. Just pushed back, not put off…

Much like our personalities, our ideas of how we want our bodies to be permanently marked are complete opposites. He wants full sleeves that would incorporate various elements of his favourite things of music, gaming and his faith into intricate designs. My ideas are much simpler and smaller – just a couple of line drawings on my wrists and upper arms, perhaps. Each drawing will represent something significant in my life.

A year ago I didn’t even know that one would sometimes need to be inked for medical purposes. And if someone had told me that my first tattoo would be one of those, I probably would have laughed it off. 

In the more conventional sense of a tattoo with ink, I now have three little dots, which could easily be mistaken for freckles or moles. These were used to align the machine correctly before starting each session of radiotherapy.  

They might fade over time or hang around there forever, I’m truly not sure. What I do know is that they are little reminders now.  Each time I see these little tattoos, I’m grateful for what they mean. They represented the start of my recovery journey. But now that that part is done, they remind me of how far I’ve come in the last couple of months.

In line with the definition of a “tattoo” being a mark, permanent or temporary, that is fixed to the skin, I also have some other “tattoos” – surgery and recovery scars.

It’s harder to see the beauty in these tattoos. These kinds of scars are a lot more noticeable and harder to hide from myself than the little dots. They glare at me every day when I get dressed.

Looking at the upside down T-scar, and random needle and tube marks on my stomach and neck, the process from which they were born still fills me with anxiety. They are memories of the long, lonely nights in a hospital bed that my heart suffered through, and the many doses of morphine and other medicines that my body suffered through. There is also the unintentional comparison of what it looked like before, when the skin was still smooth and undamaged.

Despite the scars getting lighter with time (and tissue oil), they will never truly go away, and neither will my body restore itself to its pre-cancer state. My skin has irreversibly changed, just as much as my heart.

Going forward, I will forever be a scarred lady. I refuse to look at the scars as tokens of misery that want to remind me of all that cancer stole. I strive to wear them as medals of battles won. May that never change. And may my next tattoos be by my design and my choice.

Goodbye to those who never were

For as long as I can remember I have been on the see-saw of potential motherhood: hopping between being excited for one day becoming a mother and being too terrified to even want it.

I am convinced that I would have been a good mom, in the sense that I would have been wholly committed and devoted to the children entrusted to me. But deep in my heart, if I am being truly honest with myself, the excitement was eclipsed by the fear of royally screwing up my children.

But when I got sick and my potential to bear kids was ripped away in a very short space of time, it put into perspective how 100% unprepared I was for parenthood.

I have a Pekingese, whom I love like a child and would take a bullet for, so I cannot imagine the unmatchable love and irrational fear that a parent goes through from the moment they find out that they are becoming a parent.

It was difficult enough having to go through multiple surgeries, a major recovery and a course of radiotherapy without having little people, who are wholly dependent upon me, to care for.  I wish I could personally hug every parent – in the world – who has gone through such a physical trauma while also caring for and raising children. Those parents are unsung heroes who have fought wars unseen, wars for which the world has no medals or recognition to bestow on them.

I have, to an extent, made peace with the fact that I will never be able to bear children, but that doesn’t mean I don’t still sometimes get sad about it.

We wanted a boy and a girl, Aaron and Fallon (the girl’s name was all me – hubby and I could never come to an agreement about a girl’s name). I know they never were, but they will be “what-ifs” that I will carry with me for the rest of my life.

The fact that we were never able to conceive our kids has made it so difficult to mourn them.  We have nothing to bury, no ashes to scatter or a memorial to visit – because they never existed.  How do you grieve something that was never real to begin with?

I don’t have the answer to that question. It’s just something I have to do, little-by-little and day-by-day let the reality sink in and our hearts heal.

The cost of not having kids has brought an opportunity to spend quality time in our lives and making way for other dreams.

We have the opportunity to pour ourselves wholly into our marriage, into dreams of seeing the world or starting new ventures without carrying the guilt of what society expected from us at our age – after all, a family without kids is still a family.