Daily Struggles

I used to think that there was nothing worse than dying of cancer…

After five+ years (and fast approaching almost six years) I have found that there is…

Cancer drastically changes your outlook on life and affects every aspect of your living experience. I think it must be the mortality issues it drags along with it – as if you don’t have enough to deal with…

Cancer… for me… has led to the absolute destruction of my creative confidence….

Nothing is worse than actually fearing EVERYTHING! Second guessing – mind games and then succumbing to reality that why bother cos none of this matters in the end… anyway???

I am convinced that I have PTSD. Other times I think I am just depressed – as in SAD… No! I am not suicidal thank you very much! I already have something waiting to kill me!

I do not want to stop living, on the contrary, I want to live and love and thrive! I don’t feel worthless or unworthy… I do however feel sad and afraid.

Afraid of everything… everything…

On bad days I sit and stare into space. A Writer who can’t write. A Photographer who can’t take a photograph. A Filmmaker that can’t make a film. Somedays I can’t even express myself and just nonsense (interspersed with expletives) pours out of my mouth!

It’s not that I don’t want to… I really want to but feel I just CAN’T – I feel incapable… And even if I try my mind tells me ‘This is Shit!’  I am often stumped by this behaviour – its destructive – self annihilating! Who is this person? Has my life come to this? How???

I look in the mirror and don’t recognise the person staring back at me. The physical changes of my body is a battle by itself but something I am learning to cope with. It’s terrible realising that you are aging and then ontop of that you realise that chemo has added another ten years of fat and wrinkles *crying face* to your physical being.

I often talk about the aging process with my husband. It usually starts with a look in the mirror after a shower and then escalates dramatically to going to Ma’ruf and saying: “Why the F#@$ has my underarms become so flabby (while flapping arms frantically back and forth) I have grown wings!”… Then proceeds to poke at inner thighs – “Look here man! What the hell is this Shit? Jelly wobble… Gross shaking inner thighs are going to kill me!” But best and worst of all… “Why is my Boob UNDER MY ARM?” That’s right – you heard me – “UNDER MY ARM!?!” – the HORROR!

It’s okay I tell myself. I research how to ‘unflab your body after 40’ and Google thankfully eases my already crumbling grip on reality by offering a myriad of solutions – quick ones and hard ones! So helpful!  Apparently my wobbly problems are exacerbated by Running! Running makes me fat and jiggly because I am no longer considered a young person who tones up from cardio exercise! I have to weight train to build muscle – otherwise I must just succumb to being a loose skinned old person who insists on running!

*Laugh Out Very Very Loud*

But at least I understand that I will have to pick up heavy things such as weights, kettlebells and sandbags in the gym. So there is a remedy. A way to tone up my junk! I am very hopeful and excited about this new challenge.

I am however still lost on the ‘everything I do is Shit’ dilemma. The psychological effects are something else entirely and it’s not so easy to shove it aside and laugh it off. It’s a daily struggle and something I have to deal with every minute of the day. When I am inconsolable, I remind myself of what my closest friend once told me: ‘You are your own worst enemy… All you need is a little kindness… Be kind to yourself!’

I guess we could all do with just a little kindness because having courage is utterly exhausting.

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Will Cancer ever be done with me?

Are you still sick?

I DON’T KNOW…

Is IT finished?

I DON’T KNOW…

Are you done with Cancer?

I DON’T KNOW…

I hope so. I pray so. I wish for health and longevity but I have no control over the inner workings of my body. The only control I have is how I live in this body with this reality…

This thought jumped at me when I heard of Olivia Newton-John’s recurrence. I was really sad to hear that her cancer had returned. This is not a new story for any of us living with cancer. The nature of this illness is such that no one knows if it will recur or why cancer recurs. The hardest part is dealing with the uncertainty of WHEN it will return…

Living under the dark cloud of cancer recurrence is horrifying. It can really paralyze you with fear. I know this all too well. I struggle with this… I cry about it… I laugh about it… I curse and swear at it…. But it is there… The difference between a healthy person and a cancer thriver is knowing with certainty that this THING can kill you… and it probably will…

Someone once asked how can I prevent Breast Cancer from happening to me? I scoffed at a reply that stated – DON’T GET BORN! Breast cancer cannot be prevented (unless you have both breasts removed before cancer occurs). You can try to reduce the risk but there is no way to prevent it. It can be detected early, treated early and may be ‘curable’ for a good number of years…

Breast cancer used to be a disease reserved for the old, declining in health and years, unfortunately this no longer holds any truth. Women and men are being diagnosed with breast cancer in the prime of their lives… and NO ONE KNOWS WHY! Science has STILL NOT FOUND A CURE because there is NO CURE to date! Doctors are still baffled with the mechanism of how cancer moves from a primary tumour to other parts of the body!

Huh?!? It’s true… And fucken Unbelievable…

And yes I believe a healthier diet and lifestyle can reduce your risk of breast cancer, but I don’t believe that it can cure you… It can make you feel better and help you cope with the stressors of daily life but not with the enormity of a cancer diagnosis. Truth is…

NO…BODY…KNOWS…

But for now… there is relief, reprieve, remission and hope.

And that’s all

I am Not your Inspiration

Someone once rudely accused me of being ‘Inspiring’. Proceeded to tell me off and said she would pray for me.  I was like…WAIT… WHAT??? I kinda got stuck on ‘Inspiring’!

*Hysterical Voice – WHAT does that even MEAN???

As far as I am concerned – “Inspiration –  is the process of being mentally stimulated to do or feel something, especially to do something creative”

When I think about inspiration, what inspires me most is ordinary people who have done extraordinary things. We appreciate when someone has the ability and willingness to be selfless, creative, innovative, or just dares to be different.

My idea of inspiring would be Mother Theresa, Martin Luther King Jr, Gandhi, Mandela etc… All of them were ordinary people who decided that the world needed their help – they were true leaders who believed that they could change the world and who, despite nearly impossible odds and tremendous opposition, weren’t afraid to try.

Maybe my understanding is flawed. Now don’t get me wrong. I am not being rude (well maybe) but I have such issues with this concept. So I sat and thought about it. What doesn’t feel right about this word? I have breast cancer and I write about it. I have never claimed to want to change the world (even though I would love to) or save people (I so wish I could) from their illness/mental issues/debt/divorce/lives. I am not saintly and I choose to show my flaws unflinchingly. I am unapologetic and honest about who I am.

Then I realised that the problem is actually Society. You see we constantly compare our lives to ‘Others’ for validation. And this is problematic in my case because this ‘Other-ness’ of mine is called Cancer and is NOT inspiring…

Let’s be blunt – for example, “Oh my, she has breast cancer and can smile and be happy, I should never, EVER feel bad about my life”… you know what… STOP THAT! This thinking perpetuates the idea that people with cancer are special for living with it or through it and it is preposterous because ultimately those decisions are not made by any of us mere mortals.

In all honesty I don’t think I was made to ‘Inspire You’ by my writing/blogging. I write because it is a huge part of my job and that my dear, doesn’t make me ‘Special’… I will NOT apologise to Anyone about my Rude Behaviour (what she actually means is my inappropriate Language use… oooh shem) and I do not need to explain Anything to Anyone! I am only answerable on the Day of Judgement to my Maker – and in the end your opinion means Nothing!

If I have inspired you, kindly ask yourself what have you done with this inspiration? What have you done to change the world we live in? Dig deep… And once you have answered that question hold onto it tightly because inspiration comes from the Almighty alone!

Do you GET IT? Probably not… Why do I even bother?

***DROPS MIC

This is Tired

I am tired. It’s been so long that I don’t remember being not tired. My brain is tired and forgets everything from which day of the week it is, to birthdays, to playdates and party times… I rely on Facebook to tell me whose birthdays I have forgotten and on Whatsapp to keep track of everything else… Thank goodness for technology!

I am endlessly exhausted… This is not something I am used to because I WAS NOT ALWAYS TIRED!

And no amount of sleeping has made me feel better. I wake up like this every day. Nothing and I mean NOTHING has improved my condition. I tried changing my diet – Low Carb High Fat just made me constipated and Paleo made me feel feral. I obviously crave sugar and because I try real hard to restrict my intake I satisfy my cravings with copious amounts of dates which gets me to midday without shovelling satisfyingly good chocolate down my throat. I tried coffee to kickstart my morning and make me generally sociable – but Haibo! heart palpitations are scary and freak me the hell out.  I also tried supplements… but I am not allowed to mess around with extra supplementation due to current medication interaction – in other words – it could possibly interfere with my Tamoxifen and THAT may just be catastrophic!

How does Chronic Fatigue feel you ask? My throat is always sore. My head hurts. My muscles ache. My bones are icky. My hips are officially retired and my feet feel like bags of concrete. My back and shoulders are trying to assassinate me.

This is Chronic Fatigue… apparently caused by CHEMO (insert swearing screaming emoji)!!!

I unfortunately do not have any special strategies or tips of how to get over this and apparently   there is no quick fix. The last time I spoke to my Oncologist she said it is a lingering effect of chemo and something I have to learn to live with….

I am not complaining because even though I feel shitty now I will still go for a run later today! To show this fatigue that I will not let it rule my life and turn me savage instead I will eat whatever comes my way because how else am I supposed to fuel my running???

I know I am just making excuses to eat whatever I want and yet I haven’t been more aware of the lifestyle army screaming – watch your weight, eat healthily, increase fruit and vegetables, decrease fat and sugar, drink tons of water and get plenty of sleep and always remember to smile and be friendly and polite! Insert Middle finger emoji! Hahahahahahaha… Right!

I refuse to endanger my volatile mental state by denying myself a samoosa when I feel like it! That is NEVER going to happen, okay? I don’t see how this could possibly affect my Fatigue which is THE issue!

And on a lighter note… A friend sent me this:
(PS: She is a Doctor and is living with Stage 4 Breast Cancer)

THIS is how to Cure Your Cancer:

Take a handful of Kale and add Turmeric to it and put it in Carrot juice and use as an Enema for 15 days then stand in a Yoga pose for another five days then massage Cannabis oil all over and slip an slide for two days followed by organic ground coffee enemas until you successfully shit out all the cancer! There! Just stay in Downward Dog all your life with your head in Coconut and Avocado oil and have someone sprinkle a light dusting of Matcha and Green Tea all over you! Voila!

Bwaahahahahahahaha!!! LAUGHING FOR DAYS!

And Yes, people actually say the DUMBEST CRAZIEST RUBBISH when they hear you have Cancer! I understand that maybe they know EVERYTHING and really want to help us ignorant cancer patients but hey…. if it were SO SIMPLE why are people still dying from Cancer??? nmy opinion I think Maybe they haven’t tried the Cannabis Enemas!

 

Fat Shamed

Last week I was fat shamed by another mom fetching her kid at School.  We had not seen each other in a couple of months and yet she could not wait to tell me how much weight I had gained. I must admit that we are not friends, but we greet each other amicably at all school functions and no we don’t socialise or have any kind of friendship.

At first I laughed it off and responded with “No man, I have not put on weight since you last saw me…” to which she then retorted “I assure you, you have put on a lot of weight since I last saw you…”  I grabbed at my oversized jersey and wrapped it against my body tightly and retorted that she is mistaken… and hurried away from her as quickly as I could despite her argueing vehemently how fat I had become…

I COULD NOT BELIEVE THE NERVE OF THIS WOMAN! I stomped off thinking what a fucking piece of shit! Does she even know how much I struggle with keeping my weight ‘normal’? Did she even consider the fact that she hurt my feelings? Does she even know how much effort it takes to look like this? The hours of training, the blood, sweat and tears??? The courage and heartbreak I carry with me everyday as I try to live in a body that betrays me over and over again????

Noooooo!!!

So before you judge my fat round body… please consider this:

BEHIND CLOSED DOORS WE ARE ALL FIGHTING WARS

And in case your small mind cannot comprehend this certainty let me make it simple…

That just because it may not seem that somebody is battling with something on the outside, it does not mean that they are free from any battles. There is no such thing as perfection and every single one of us are fighting personal challenges… mine just happens to be my body!

PS: Before you even puke out the words ‘You are Fat’ to ANYBODY…
consider that you are an A**HOLE that needs to STFU…

 

I am Obviously Still Confused

Yesterday I checked my WordPress account and was pleasantly surprised that my stats were up despite my very ominous silence from social media. I am sorry that I have not written in such a long long time. So much has happened and so much has changed that I decided that a quiet sabbatical was really needed on my part.

You see I am one of THOSE people who gets really affected by social media. To me it has a negative influence on my psychological state and in turn affects me spiritually. I am relieved that I came to this realisation because for the longest time I thought that I was crazy lol! I FEEL QUITE SILLY ABOUT IT ACTUALLY, because, dammit… I am a Comm Science Grad and I know how this shit works…

So anyways, I quickly glanced at my last post and the horror kicked in…
I don’t know how many of you write and then reread what they have written a few months later…

I am so embarrassed to say that my last post dated 26 April 2017 is completely incorrect…
It was my 5 YEAR CANERVERSARY – NOT 4 YEARS!!! I was diagnosed in 2012…
I think I made the mistake because I really did not want to think about it, because you really don’t want to think about Cancerversaries, but you do… not that you have to…

I even attended my bi-annual checkup late in June because of the sheer reluctance of facing reality…
And the first thing my Oncologist says to me? CONGRATULATIONS ON REACHING YOUR 5 YEAR MARK! IT IS A REALLY SPECIAL MILESTONE BECAUSE YOUR TYPE OF CANCER USUALLY RECURS WITHIN THE FIRST 5 YEARS OF DIAGNOSIS! Ended with a big full body hug!

I am grateful Alhamdulillah!
PS: I also got downgraded to once a year checkups woohoo!!!! So at least I will have anxiety about hospital visits only once a year YIPPEE!

Dreamed to Life

I remember so clearly how I sat and literally searched for hours for content that related to my breast cancer. All I wanted was to hear from other local women about their experience with breast cancer. I was really frustrated and dismayed that there was nothing available on social media. I kept wondering where the local content was… I kept asking myself why no one was making this available to others…

Until I decided that I would stop asking and start doing…

I dreamed this project into life in 2012 while sitting in a chair and getting chemo… wondering if and when… pondering my own mortality and sanity…

Until I picked up the camera and was able to record stories from other brave women who have been where I have been! Standing there listening and looking at other women and seeing myself in each and everyone’s stories was utterly heartbreaking and humbling. I am forever grateful for their time, honesty, courage and strength!

Thank you for sharing my vision and allowing me a glimpse of your life!

SAY Channel Introduction
 

PS: This is an ongoing project, if you are willing to share your story please contact me at: sumayyajohaar@gmail.com
PPS: Please LIKE and SHARE and SUBSCRIBE

Shukran! Thank you!