Our story so far has seen our heroine Tamlin admitted to ED after a fall, misdiagnosed with lymphoma and as her family wrap their heads around that news she received her correct diagnosis of Blastic Plasmacytoid Dendritic Cell Neoplasm, or BPDCN for short (because who has the time to say that mouthful in a hurry). Catch up on part 1 & 2 using the buttons below.
BPDCN is an extremely rare cancer, but most commonly found in older men over 60.
So, for me, a young 13-year-old girl, it was near impossible for me to get it, but I did, and the world kept turning.
The new diagnosis changed the doctor’s approach, I wasn’t facing a type of cancer I could live with and take care of with medication. I was facing a monster worse than the ones under your bed. By this point I was losing hope and fast.
That day they told me that I had BPDCN is easily the worst day of my life.
I had to start treatment straight away if I wanted even a chance to live.
Their goal was to get me to BMT (Bone-Marrow Transplant) and give me a whole new immune system. That was their goal and it was the only goal that mattered.
On the worst day of my life, I found out I could never have my own biological kids, that if I hesitated while in treatment I could quite possibly die, that I wouldn’t get to do year 8, that I wouldn’t and couldn’t go outside and see my friend or the sun.
On the worst day of my life, I realised that I would be dragging everyone who loved me, and I loved back through hell, and there would be nothing I could do about it. I couldn’t protect them.
After my 2nd diagnosis, the chemotherapy started straight away. It started out in heavy and big doses that didn’t ease.
The first dose of chemotherapy that I ever got went into my spinal fluid. I was in the hospital for a week after it with an excruciating headache and even worse back pain.
At last, I finally came home after what had felt like a million eternities and a half.
When I arrived home, I felt out of place, like I didn’t belong. Everything seemed alien, but maybe I was the alien.
I slept in my sisters’ bed in her bedroom surrounded by her things, but it was at least home. The fact she had a tv in her room also helped. Being home, surrounded by my family with my mother’s cooking felt like heaven, and if I had to die that’s how I would want to go- surrounded by my family so I could tell them that I loved them more than anything until I wheezed my last dying breath.
Obviously, that didn’t happen since I am writing this, but what happened instead felt just as bad dying, if possible, worse.
I was a terrible person to those around me. I knew it wasn’t their fault that my stomach felt like it had a thousand knives constantly stabbing it, that I couldn’t breathe, walk or that I had horrid hair.
It was the treatment that made me a terrible person with even worse hair. But in the end, it saved me, the treatment- not the horrid hair. Even when I was screaming and shouting for them to leave me alone, they never once left.
Editors note: As Tamlin says what comes next for her is indeed worse than the initial treatment. Adults who have undergone BMT protocols have told me they would have willingly died rather than live another day during BMT. Children's protocols are no kinder than adults and at times more aggressive because we're trying to win our children another 60 or 70 years of life instead of another 10.
Tamlin writes a more optimistic story than that, but I wanted to pause here as a nod to her extraordinary ability to look back on her treatment and see the optimism, see people's love for her and believe in her tomorrow.
Tomorrow Tamlin shares her story of high dose chemotherapy in preparation for BMT, the healing of her 'zombie bite' (the skin graft where the alien once sat) and her fear falling into the dark place that General Anesthetic send you to.