Ray of hope

Is it still alright to hope when deep within you know that the reality is far from hopeful?

2015 has been a challenging and a learning year for me. I have done things I never imagined myself capable of, some of which will be unsaid forever and go with me to my grave. I took a leap of faith and decided to quit treatment and go to Europe. I was over-ambitious and planned a trip for three months. I lasted a month only to come back home to find I no longer had any treatment options left to try. 

My only option was another Stem Cell Transplant. Now I'm sure I've told you before how painful it was to go through it two years ago. I thought long and hard and realised that I still have a lot of life in me to give up just yet. My visit to Europe opened a new world to me. A world I wanted to explore and experience. I decided I wasn't ready to die, not yet anyway. So I said YES to the Stem Cell Transplant. 

Now I deceived myself into believing that I would get through the first and the more painful transplant just like I did two years. I forgot that my mind and body had gone through several painful treatments in the last two years and were much more badgered than I had anticipated. 

Two days in the hospital and I started to feel suffocated in the environment. Nightmares both with my eyes open and closed kept me in a state of constant panic. Everyday seemed to be my last as I lay almost lifeless on that hospital bed waiting for it to end, waiting for the pain to go away, waiting for something to change for once in my life. 

Three weeks of misery and constant battling with the medical staff enabled me to get back home. I went and stayed at my parents' home for nearly three weeks. My home no longer felt like mine, the bad dreams would come back and haunt me and I remained at my parents' place. 

I finally decided to face my demons head on and moved back to my place. With each day gone, it became easier and I slowly started finding comfort in my own surroundings and belongings. 

And all this while I struggled to look at myself in the mirror. I didn't recognise the bald face staring back at me. Each morning I would wake up hoping that somehow miraculously I would have my hair back. Why is physical appearance so important to me? Why does what the world think matter so much to me? Why is there this stigma attached to looking different?

While dealing with my own battles, each day brings other battles within my family. With each day gone, I feel more detached and withdrawn from them. I am slowly hiding in my cocoon and my shell grows bigger with each battle lost. 

And here I am at the junction of the next phase of my treatment - a donor stem cell transplant. It not only takes nearly a year to recover from, it also brings several complications with it including a chance of it completely failing even with a perfect match. Now its very easy for the medical staff to say - Live one day a time and the year will be gone in the blink of an eye. Will it? Life as I know is about to change and I may never be me again. I mean really I'll have a new immune system, new blood group, need vaccinations like a newborn and have any medical issues my donor aka my sister has. 

How does one know all this and still be normal and still get going with each day as normal? How does one still maintain the Ray of Hope that there's light at the end of the tunnel? How do you believe that everything will be Okay at the end of the day? How do I know whats normal anymore and how to be it?

The predicament of my existence...

You're damned if you try, you're damned if you don't..... I face the dilemma of my existence day in and day out.... Where does one go when life gets tricky? Do you run or do you stay?

My predicament is the following two choices....

Do not work - Stay at home and stay indefinitely on an ongoing insurance which is never enough to pay for all medical expenses and let my life waste away and feel worthless and to top it all of accumulate debts and never be able to do the things I love and fulfil my bucket list before the doctor waves the red flag and its too late.

 OR

Work - Do I work in jobs that don't matter and earn money. By doing this day in and day and try to pay my debts and may be able to save enough money to do the things I love. The risk in this choice getting sick from exhaustion or infections and losing precious time that may never come back.

I question the purpose of my life every day and find no answers. Am I alone or are there many like me who seek answers to this puzzle every moment of their being. Why was I damned with this disease. Why did god give me a strong and intelligent mind when I can't put it in to use? What was the point of it all?

Live - Do I continue to live this life and wait till the end? Wait till the misery ends? Do I keep pushing myself to get up every morning and find a purpose of my existence? Do I try and fulfil my bucket list despite all odds? Do I live just because I can't hurt my family and friends by choosing otherwise?

OR 

Not Live - Do I listen to my body and mind and let it rest in peace? Can I let go and just be happy with the life and moments I've I've shared with my loved ones? Is it acceptable to decide when you've had enough and can no longer take another step?

What do you do when you are in my position? I wish someone would swap lives with me for just a few moments so they can see the dilemma of my life and help me cross the bridge and come out on the other side.....

A dream to never wake up again

Exhaustion is finally setting in, my legs are tired of kicking and I am no longer able to keep my head above the water. My body slowly gives in and stops trying to hold onto this life not long ago I so desperately wanted to. 

I stand at the bank of the river and see my limbless body slowly sink into the unknown. I could see it for a few more seconds before it completely disappeared. I sat there for what seemed like hours but probably were the longest few minutes of anyone's existence. I use existence and not say my life as I no longer live. I'm a shadow of the someone who just left me. A lone tear slips down my cheek and I smile. I'm finally free. Free from this pain and misery. Free from the constant battles. Free from the disease. It's over. 

I suddenly wake up with a jolt. I didn't want to be pulled out of the dream. What a lot of people may find horrific, to me is a beautiful dream. A dream of no longer suffering in this world. An existence beyond this body's pain and agony. A place where I no longer have to set foot into another hospital or get another scan or get pricked by another needle.

I am a cancer patient, I wish I could say I'm a proud cancer survivor, but unfortunately in today's modern and advanced society, there's still no cure for multiple myeloma. It's added on to my earlier in curable diseases of lupus and hypothyroidism. As if the list wasn't enough. 

My body is slowly showing signs of decay and an eventual collapse. But the doctors keep moving me from one drug to another hoping of giving me a chance at life. Is this life so important - is it even worth living this life with all the pain it brings along with it. 

The disease has made me financially poor and I now have large debts. As an unfortunate consequence of that I can't fulfil my bucket list. How ironic is this - I'm running our time so I should do everything I want to. But hey I need money to do it so I need to work. If I work, there are two consequences - I then don't have time to do anything else, I'll run out of time by the time I can earn enough money and eventually my body would wither away and I won't be able to do those things anyway. 

So I ask the question again. Is there a point of my existence. Is it too much to say I've had enough. Technically speaking, this is my life and I should have  the right to choose what I do with it, when I live and when I die. So how have laws and this society taken that basic right away from me. Why can't I sleep and never wake up.. 

How do you define loneliness?

Have you ever wondered what loneliness actually means. What are we comparing it to? Is it opposite of happiness or is not not being surrounded by people. Who are these people whose absence makes us lonely? Or is it this one person who has caused the void in your heart? Is it because we miss this person or just got used to them being someone?

Loneliness for me more than being alone (literally). My soul is empty and void of joy. It seems the one I loved not only took my heart with him, he took my ability to feel at peace and content with him. I surround myself with people day in and day out and yet I stand alone looking at their smiling faces. Why don't I feel the joy in life like they do? I have always fought battles and have always come out alive, then why am I already dead in this battle before I have actually fallen to the ground?

Cancer, My Love, Parents, Siblings, Friends - Can I have any more battles to fight at the same time? I thought I had so many to love and who loved me and then why do I stand here alone fighting all these battles today? Why am I lonely? Why is my heart sinking with every step I take? Why do I go ten steps backwards with each step I take forward?

Too many unanswered questions. Too many battles for one person to fight at one time. I struggle to find the reasons to go on.

Is there ever going to be an end to this?

It's a question I ask myself every waking moment of my existence. 

I have been a fighter or over 15 years, battling illness and fighting for autonomy since the moment I began seeing the world. 

And today this fighter surrenders to it.. I no longer want to fight this battle. My psychologist asked me a question today that got me thinking - "What keeps you going?" and I replied because I want to live and be normal and do all the things people do. And then I left after the session thinking about the actual answer and to my surprise, I didn't find any.

I found no reason to go on and fight this battle any more. 

I found myself thinking about all the things I have ever wanted and not got. I think of the adolescence I have lost during my hospital visits, My youth that I lost fighting for my life, love and freedom. I think of the person who took my heart with him and never returned it and wonder if he ever realised how much he had wronged me, Does he realise that he not only broke my heart, he stole my soul and spirit in the process and left me bereft of my own self esteem and confidence, stripped me of who I was, standing naked in front of a battle I wasn't ready to fight alone. 

And as if life hadn't given me enough grief, I am left alone to fight the hardest battle I have ever fought, Cancer. It's a word you think is for others and not for you. Never in my wildest dreams had I imagined I would have to fight this too.

I struggled through the first transplant and came out as a hardened person. The pain and misery have left me broken. I lost my hair and whatever little self confidence I had was gone. On top of that, I am still fighting for autonomy and control over my own life. my parents still treat me like I am five and tell me what to do and not do and I have again despite all efforts have become the 'sick child' of the house. Below are pictures of me before and after the transplant. 

Before the Transplant

After  the Transplant

And here I stand totally empty and still needing to prepare myself ready for the next transplant. A transplant with higher risks and unknown side effects. I think and talk to myself that I need to go through this but the thought of putting myself through this is where I stop and my brain and heart are screaming out the words "No, No more, please have mercy on yourself, don't put yourself through this, you don't deserve more pain".

I can't do this any more. My mind and body are tired. I look at the mirror and see this lonely, sad, broken, unattractive girl. I am so tired. And I again ask myself  the same question yet again.

"Is there ever going to be an end to this?"

Coming to terms with reality

I sit here and feel like its not even my life any more......

I have been diagnosed with Multiple Myeloma - a rare form of cancer of the plasma cells. Statistics say that out of all forms of cancers, it comprises of only 1% and the patients are generally above the age of 60 and mainly men. What are the odds of a 29 year old female being diagnosed with this disease?

I have always battled with sickness for most of my life. I was diagnosed with Hypothyroidism at the age of 12 and then lupus at 17. As a consequence of lupus, i have cataract in both my eyes, have POTS syndrome, Reynauds phenomenon, pulmonary hypertension and countless other side effects. I had learnt to live with all of them, trying to find a balance in my life adjusting it to fit all of them and yet do the things I have wanted to do.

But then someone sadistic sitting up there in the clouds thought I hadn't had enough and to throw the worst nightmare of every person at me - CANCER.

3 February 2011, I am sitting at the clinic waiting for my turn to see my Rheumatologist completely unaware of what was about to hit me. I went in to see her after a long wait and what happened next caught me offgaurd.  She said my blood results were back and there was something strange in the blood. She kept saying there were monoclonal protein in my blood and I got frustrated and asked her point blank to be honest and upfront with me and tell me what it was. She reluctantly said it was Cancerous in nature. The world suddenly came crumbling down and her words echoed in my ears. My favourite doctor finally came in to see me and the look on his face told me he was scared for me. A sudden fear gripped me when the doctors said I couldn't go home and had to get admitted straight away for further tests. Panic hit me and I made a stressful call to my brother who came rushing to the hospital.

After that it had been a long journey of blood tests, scans, bone marrow biopsy while I sat in the hospital patiently waiting to know the verdict. The Haemotology registrar came to see me and confirmed I have Smouldering Myeloma. My family was devastated and tried to comfort me in their own little way. I went home and the series of hospital visits began. The doctors suggested an Allogeneic Transplant i.e. stem cells from another person. My siblings got tested as potential donors and  the search began. I remember the day when the Haemotologist told me that none of of siblings were a match and I couldn't believe my ears - 3 siblings and none were a match. It was a cruel joke and sadly it was on me.

The doctors came to a general consensus that I should be transferred to another hospital where there is a team of stem cell transplant specialists. I met the new doctor and he seemed pretty comfortable that I had MGUS - basically a stage that is non-malignant and will not harm me. This was only 7 months ago.He said I easily had 2-3 years before the disease would show any signs of change. In the meantime, I got a  call from the other hospital that there had been mistake and that one of my sisters may be a match. Now by this stage, I also found out that she was pregnant and couldn't donate stem cells for a while after her delivery. My Doctor reassured me that it wont come to that stage as i wont need a transplant for a while.

A month ago i found out that the time has come for treatment. My 2-3 year plans have been snatched away from me. I will be going in for treatment at the start of 2013 - chemotherapy, Stem Cell Transplant and potential Graft-versus-Host disease - Recovery period up to 1 year.

What have I to live for? There's so much uncertainty surrounding my life that I'm starting to question if its even worth trying. No health, nearly 30 and have no stability in my career, love?, I may never have children, my family treats me as a sick child and cannot identify with me as an individual with an identity. Im starting to question if its even worth it. Is there any point in putting myself through all this. What is it for?

I feel like I'm finally coming to terms with reality and what the future holds for me and to be honest  it looks quite bleak. 

Questions

It’s been a while since I have expressed myself in words; however, I felt this innate desire to break my silence and ask questions that have been haunting me for months. Life’s been a very interesting journey so far….

I have grown as a person and have made some hard choices. I have this constant battle within me whether I believe that god has been fair to me or not. It seems he hasn't left me much choice but to battle my way through. I am constantly fighting to live a life I feel I deserve and then there are times when I can’t even find a reason for my existence.

At times, I feel one lifetime isn't enough to achieve all I want to do and yet at times it feels like a never-ending journey. I feel like I’m racing against time and there never seem to be enough hours in the day.

And then there is someone I love to the point that it almost hurts.How can a few months with someone feel like an eternity?   Can you love someone so much that you fear to even think of a future in case it’s a dream and might come to end?

And then there is a part of me that is never happy with the person I am despite achieving so much and coming this far ahead in life. Why do I torment myself with these doubts – I wonder.

Life is a mystery that I am on a quest to unravel it and hope to find content and peace that I believe we all deserve.