Hope has been such a powerful and important word for me as I continue along the uncertain and rocky road that is life with a desmoid tumour and familial adenomatous polyposis.
The many specialists and surgeons I see have always managed to give me advice that is future thinking – whilst being completely honest when things aren’t smooth sailing – and I’m so grateful for that as a young person.
So you might be wondering why I’ve titled this blog claiming back lost hope.
What I’ve come to realise upon reflection is the enormity of what chemo took from me. I went through 6 or so months of chemo when I was 27 and as it flushed through my body every week, it really showed my tumour who was boss and stopped it growing, and even started shrinking it. I credit the chemo for navigating me out of an extremely high risk situation…but like everything in life, it came at a cost.
The visible cost was my hair. Nothing could have prepared me for the trauma and loss I felt. As I started reaching hair goals, I was elated but at the same time couldn’t imagine my hair getting back to it’s pre-chemo lushness and length. Here I am, two years on from my hair starting to grow again, and I still pinch myself when I look in the mirror and see a full head of hair that makes me feel like ME.
Then there’s what was happening behind the scenes after chemo. It turns out, many body organs don’t respond well to the wrath of chemo – my ovaries in particular. A few months after transitioning from chemo to the treatment I’m on now, my periods stopped and were replaced with pre-menopausal symptoms. With these symptoms I lost hope in my future fertility and options for starting a family. It probably didn’t help that my long-term relationship had just ended as well – hope was not on my side and it felt like my body was failing me at a time in my life it was meant to be in its prime.
It’s been a rollercoaster ride to say the least, but I feel that I am gradually coming out of the trauma and challenges of life after chemo and claiming back lost hope.
I recently had blood tests that showed my hormones are back to normal and my ovaries are working again, after two or so years of essentially being in menopause. I picked up on my ovaries working before the blood tests as I have now had two periods. I don’t think I’ve ever been more delighted to have a period in my life! I am still very cautious and tentative on being too positive. As I have familial adenomatous polyposis – it will be a long process of genetically testing embryos because my personal choice is I don’t want to take the risk of passing this on. Then there’s the unknown about the full extent surgery and this desmoid tumour has had on my fertility… i won’t fully know until I try.
What I am trying to do for now is live in the moment. I’ve gained back so much this year and on the ovary and fertility side, I’ve been handed a sliver of hope that I thought was well and truly lost.
Most of all, I’ve once again been amazed at what my body can bounce back from.