I want my life back …

Knock Knock…I am backkkk !

It has been so quiet in here since my last post, which I remembered it was the starting moment of my life with 12 cycles AVBD Chemotherapy regimens… the Hodgkin Lymphoma Cancer and my new born baby Arie.

But then, before I have transformed to a Lady Lymphoma…I was once a Lady Meningioma -the lady with stuff in her head.

“Are you ready my dear” my neurosurgeon asked me before we departed to the surgery theatre. That was the most terrifying thing to hear for a woman that about to cut her skull out and dug her brain in and messed with her pretty face…I was referring to my significant momentous exactly on this date, today 18th September four years back in year 2012.

Yaay !! Happy 4th years anniversary Lady Meningioma…what a great 4 years I have been living as a Brain Tumour survivor. I am blessed and may more great years to come. Some may think I was damn lucky to be alive, yeah probably true though but actual fact it was devastated, petrified and hopelessly miserable life after all. I have to live that kind of life to the fullest with fake smile on my face, just to feel good to myself. It was hard but that’s life that I have to live in.

I did almost whatever it takes to have my life back and GOD is great, I conceived – being pregnant again after my first, 12 years back. Wow! What a miracle. With the new life growing in me, somehow it amazingly gave me such incredible strengths for me to stay alive.

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GOD gives HIS hardest Battles to HIS strongest Soldiers…

Yes ! I knew HE never stops loving me. I thank you Almighty ALLAH for chosen me for the second time to fight another battle, to face the exaggerated mythos – the Death Sentence of the infamous tell-tale disease called the Big C a.k.a CANCER. To be exact, I diagnosed with Stage 2 Hodgkin Lymphoma Cancer, 2 months just after I gave birth to my miracle baby, Baby Arie. No doubt, I feel loved but at the same time I was so crushed and it scares the hell out of me.

 “Congratulation! You are now free,” my haematology doctor announced to me the magical word accompanied with the piece of paper in his hand. That was the most beautiful sound for a lady soldier of the hardest battle to hear. I thought I was dreaming so I pinched hard my not so chubby cheek back then…It was all real and he was referring to the result of my PET-CT Scan that I had on August 15th, 2015, Interpretation written was “No scan evidence of active lymphoma” _ a gateway for the dozens of rounds of chemotherapy, drugs and white blood booster that have entered my body since I became the Lady Lymphoma. Another coincident significant momentous, happened exactly on this date, today 18th September last year, 2015.

I love a good pun, but I was not in the mood for laughter or lightness that day. After half years of cancer treatment, I no longer needed to be trapped 8 hours in a cold day-care centre for the Chemo regimes. My doctor had finally pronounced me in remission. I had thought I’d want to celebrate or do the jiggy dance but it did not feel anything like the end-game I had imagined. I just want to hug my two girls.

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Ally & Arie

It took me a while to accept the fact that I was once a cancer patient. Then, for a while, I was only that: A cancer patient that now done with treatments, I am struggling to figure out who I am. On paper, I am better: I no longer have cancer, and with every passing day I am getting stronger. The constant flood of doctor’s appointments, blood tests and phone calls, supports from concerned family and friends have trickled to a slow drip. But off paper, I feel far from being a healthy 42-year-old woman.

My disease has left countless invisible imprints in its wake: infertility, premature menopause, a chronic skin condition, prolonged fatigue and a weakened immune system that sends me to clinics on a regular basis. And that’s just the short list. Then there are the demons of depression and the fears of relapse that sneaks into my head just when I think I have gotten a grip. The rattle of a cough in my chest, strange bruises and soreness on my both arms, missed call from my haematologist…Each of these triggers rips me out of my fragile, new reality leaving me to wonder: What happens if the Big C comes back? Will I ever feel normal again? And most daunting of all, how do I move forward with my life?

Sharing about all of this has not come easily to me. It is hard not to speak in clichés about the BIg C a.k.a Cancer. It can be even harder not to feel as if I have to live up to those clichés. I sometimes feel a deep sense of guilt for not doing a better job of making lemonade out of metaphorical lemons. I know that I am one of the lucky ones, and I am deeply thankful to be back kicking alive…

In writing about the problems I am facing now, I worry about sounding ungrateful — or worse yet, insensitive to my cancer fighter friends in the cancer community who may never go into remission. These fears colour the unexpected challenges that emerge during life after cancer, and can overwhelm the need to talk about them. After all, I am supposed to be better. So why don’t I feel better?

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#makemybed

Is’t it ironic? I was strong in the beginning of my new battle…the 2 weeks stay in hospital -warded for the biopsy tests and check-ups was kind of peculiar. I have so much energy that I have to channel out…so I talked to almost all doctors, nurses, patients and even clean ladies on that floor. I made my bed in every hours, I visited all rooms to say “hello”, I had a cold shower at 5am in every morning and 11pm every night, I giggled to myself while brushing my teeth, I write , I sing…loads more…must be the “Dexa” after effects: the steroid based drugs that I took. Somehow, it ticked my anxiety but in a good way.

My misery anecdotes start to kick-off once I first tasted my 1st half of my 1st Cycle ABVD Chemo. First look, they were just few bottles of varies colour liquid base drips: harmless I thought. The A – Red colour Adriamychin drips was okay, then comes the B – Bleomychin and the V- Vinblastine…both injected straight to my veins and they were okay too…finally the D: Devilish Dacarbazine: the one that burnt and took the longest hours…worst still its nauseatic.

I felt like jello after the Chemo session. I saw spinning stars, dragged both my feet, I felt numb, cant taste my food, can’t be near to my Baby Arie, worst still: I can’t event hold her…Miserable!  I lost a lot of weight and my hair dropped in bulked…in overall I looked horrible…I even felt like I was a walker in the Walking Dead !…that bad !!!

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#hotwomanwithshavedhead

Half way through the cycle, I manage to overcome the fear. I went to shave my head; I juice up myself clean with fresh fruits and vege: eating fully cooked food, continuing my yoga routine, mix around with positive people, started to design again and thinks happy thoughts. It was hard but the harder the better.

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#nothingstopmetodesign

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Last Chemo Shout Out

Finally, it came to the end.  I finished my last cycle of ABVD chemotherapy, in July 13th, 2015, friends and family congratulated me on being “done.” What they could not know was that in some ways the hardest part of my cancer experience began once the IT was gone.

The first month after I finished the cycle unfolded like a circus of horrors. I suffered with chronic skin disorder, inflammation with burning sensation on my skin on my fingers, my arms, my legs and thighs. It is periodic, fiery redness of my effected skin and shedding of scales exposed the epidermis. This was so uncomfortable and at times disfiguring skin disorder can be difficult and frustrating to treat. I went to see skin specialist and doctors and always ended up with loads of antiseptic cream and balm. Living my life-threatening skin disorder I caught because of my weakened immune system. My relationship with my husband of coming to 20 years together almost destructed and came to an end. We are lucky to have our two girls that bond us and keep us moving forward. After 3 months on medications and own treatment, I came across the Gluten sensitivity and Gluten intolerance knowledge. Probably I have the similar symptom and why not just give it a try…So; I decided to officially go on a Gluten Free Living. To cut it short…my skin is now back to normal: even better than before. It is like a baby skin, smooth and glowing…I am loving it and feel so blessed .

To conclude, while in treatment, I had been surrounded by the world’s best army: my supportive family and friends and a brilliant medical team who had worked tirelessly to keep me alive. The goal had been to cure the cancer. Now that I had survived the “cut, poison, burn” of the disease, I no longer had the cavalry running after me. Suddenly, I found myself standing dazed and alone in the rubble, wondering what had happened and where everyone had gone…I feel like, I no longer wanted to be anyone’s inspiration.

I am not alone in feeling this way. A growing body of evidence suggests that cancer survivors continue to struggle with medical, financial, professional and psychosocial issues long after the end of the cancer treatment. It is a life changing 360 degrees. The experience provides a renewed sense of life and purpose, but the task of rebuilding life after something as devastating as cancer can also be a deeply disorienting and destabilizing one.

I have learned since the day of my diagnosis that the big C affects all of me…There was no aspect of my life that was not torn apart as my body was literally torn apart. In my case, after my treatment ended, I experienced issues that were more intense and more debilitating than I’d ever experienced before in my life.

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Illness as Metaphor

But she does not talk about this no man’s land that exists between the two kingdoms, inhabited by people like me who are neither sick nor well. It is a different kind of deportation than the one the surgeon was referring to: It’s a journey into the wilderness of survivor-ship.

This time I am finding that there are no protocols or discharge instructions, no roadmap or 12-step plans to guide me back to the kingdom of the well. The road back is going to be my own way. The way with long-term survival kit of a new challenge: How to stay healthy and emotionally stable after treatment ends….To live life to the max and to get my life back on track…

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To live Live to the Max and to get My Life Back !

 

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