It was late 2006 as I sat on my hospital bed and looked out over the city. My heart was heavy and I had no idea what the future may hold for me. Only one week before, I was in my full-time aerospace job, a mother of two little girls and a devoted wife. Now I was in hospital and dying inside. I knew it was serious but I knew very little about the disease that was trying to consume my body – it had managed to weave itself through the majority of my torso – eating into bone, nerves and muscle.
Day after day, I lay in hospital, trying to keep my chin up.
Each day was a new challenge and provided new clues and new answers. Family, friends and co-workers would visit me, themselves floored by the fact that a seemingly young woman could actually be extremely ill and close to death. My diagnosis was also delayed – big time. I had visited seven doctors and counted twenty-one separate medical visits to get help, all to no avail and often to the claim that I was a hypochondriac.
It wasn’t until after eleven months of desperate pain and illness, I went to my hospital ER, pleading for help and someone who would listen to my concerns about my very strange symptoms. It was only after a CT scan was performed, a ‘white-faced’ senior consultant bravely came back to me with the news that they had found “something strange on my scan” and that I would need to stay in overnight or for a few nights. My brain was instantly in shock.
I also had a sense of relief that someone finally believed me.
I remember that night, my husband was with me when a young doctor came to me to tell me what they had found. She must have drawn the short straw as what she was about to tell me would shatter my perfect life and my perfect existence with my husband and two kids. She said: “we have found a mass in your back. It is pressing into your spine and causing your sciatica symptoms, threatening your right leg function and we think it may be malignant. We don’t know what it is or where it’s come from. It’s going to take some time before we know what you are fighting and what to do so you’re going to be here for a while”.
“How long is a while?” I asked. “What about my job, my kids and my house?” Suddenly, a thousand thoughts flooded my mind. A few days later, I was transferred to my home ward, Haematology – where my view changed but my resolve and drive to survive, did not. My doctors were new to me but the disease I faced was better known to them and they were experts in what was trying to attack me. I was eventually diagnosed with Stage 4 Follicular B-Cell, Non-Hodgkin’s Lymphoma and Low Grade. Granted, that is a mouthful but it was an important diagnosis in regards to treatment and the kind of chemo I needed.
In 2008, I would continue to fight the disease again.
After that episode, I then thought I’d relapsed for a third time but found it was a diagnosis of scarring to the S1 nerve root from my initial and second relapse. This was due to nerve damage from tumours/radiotherapy in the area. In 2014, I felt a familiar pain and tests revealed that I had developed a new cancer called Myelodysplasia (RCMD), which was caused by chemo treatment from my two previous Lymphoma episodes. I ended up needing an allogeneic (donor) bone marrow transplant with stem cells donated by a thirty year old male, located in the USA. I now use a lot of medication for pain and wear a brace. However, I am more than happy to be alive.
Now, I am still in remission and happy to advocate for others – patients, health consumers, people in distress or facing difficulties, particularly women with illness and disability. My passion is for women, like me who must raise their kids, while they battle illness or a disadvantage. We can all find the strength to endure, survive and THRIVE! It’s imperative to keep going, even with a poor prognosis or a non-favourable outlook.
Take heart as you continue to read and be encouraged. You can survive. No matter what faces you, continue to stand firm in your beliefs. I believe it.
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