I am a survivor of Acute Lymphoblastic Leukemia (ALL).
My name is Sarah Jane Norman. Having turned 40yrs old in July 2004, I assumed that life was settled, I was working in a profession I loved, was happy, healthy and fit and I rode my horse a couple of times a week, I have a wonderful husband and two wonderful children. They were 4yrs old and 6yrs old, two girls. Then suddenly one day in November 2004 I am hit with something so excruciating, ranging from backache to a very painful abdomen. After numerous tests I am diagnosed with ALL.
What a shock – I proceed immediately with chemotherapy treatment and then spent my first Christmas in Constantiaberg clinic in isolation in Bone Marrow Transplant Unit. I was in and out of hospital over the following few months. Every time I’m doing well, I’m hit with another bug of some sort. I continue to have many bags of chemotherapy all with very scary names. I remember being told this bag is called “Lethal” and then once you’ve had that we’ll give you some “rescue”. Wow that’s quite mind boggling and probably best not to think about it too much. Every time I had a bag of chemotherapy I would visualize it as a “lovely bag of Orange Juice, or Berry juice that is life giving and really healthy for my body, it is “healing and my body needs it.” I also had numerous Lumber Punctures.
The hardest part for me was not being able to touch my children as they were so little. I had initially gone into Constantiaberg for a check up and then told I could not go home to get my pyjamas, but was to go straight into isolation for my own well being. My children had not come with us, so I could not explain to them what was happening. The next time I saw them was through a glass window communicating via a walkie talkie. My first stint in BMTU was close to 3 months, I was so blessed and fortunate enough to have an unrelated donor from the International Bone Marrow Registry, which was a match. THAT was the most exciting day for me ever.
I had my life giving Bone Marrow Transplant in July 2005, 28 days after my birthday. I am now blessed to celebrate two birthdays in July, and it has been a long slow process since then to become as strong as I am today.
I have also had 2 melanomas luckily caught in time which were less than .2cm deep so did not require chemotherapy, just required deeper cutting out by a plastic surgeon.
I had terrible mouth ulcers during this whole process, but you learn to deal with it and mouth wash as much and as often as possible, even drinking water is excrutiatingly painful.
I had some funny times and some sad times, some scary times and some painful times, I got down to a weight of only 40kgs but am now very ecstatic to be back to my normal 60kg mark. I was in and out of hospital for 2 years and 6 months. I kept on having either bugs of some sort or the CMV virus about 5 times. Each time I had to go back for about 3weeks. We worked out that in total I probably spent in excess of nine months in hospital if you were to add it together. Our bills ran into the hundreds of thousands of Rands. How we have survived I don’t know. My beloved husband is an angel.
I picked up a virus in December 2005 just before Christmas and so had to spend my second Christmas in hospital again. Then in the late July early August 2006 I picked up a virus that attacked my pelvic area and I lost most of the use of my legs and it was back in hospital. We had booked to go away to my beloved Lowveld, White River, where I grew up, for 2 weeks in the September. I remember telling Prof “I’m out of here in three weeks”. He said, he hoped so but it didn’t seem likely, but I was determined.
I had lots of physiotherapy and worked extra hard at becoming mobile enough to go home. I did make it to the Lowveld, only just and although I was still weak I could walk very slowly. I had dreamed of this moment since the day I was diagnosed and went into hospital in November 2004.
I am back riding my horse and although I have an achey body I’m doing very well. I visit Prof every 3 months and I continue to take various natural remedies to help my aches. I have since been diagnosed with Scleraderma which I am choosing to treat naturally and frankly don’t really think is the case, as I’m told I had Graft versus Host disease which is why the healing process has been so slow. I go to a local gym 2x a week which helps strengthen my muscles and loosen the joints and then I ride my horse 2 x week, sometimes more often, depending on how my body is feeling. But I do try to pay attention when it needs rest. My legs continue to be weak.
I am taking each day as it comes and each moment in time to live in the present, the now, the calm and the happiness of being alive and with my beloved family.
May all my fellow survivors always have clarity, never forget, always love, always be thankful, blessed and at peace with themselves.
To live in Love, Light and Fulfillment is the ultimate state of being.