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.
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.
