I was diagnosed with ALL (Leukaemia) and Langerhans Cell Sarcoma between the ages of 10 & 13. Got sent to a hospice with 3 days to a week at 14. Now 11 years post hospice. AMA

As the title says. At 10 I was diagnosed with Leukaemia then at 12 got diagnosed with Langerhans Cell Sarcoma.

These two diagnoses made me the 5th person on the planet to have Langerhans Cell Sarcoma, the 51st person to ever have it and the ONLY person on the planet and EVER to have had the two Cancers together.

This meant that the hospital and “system” had no protocol, no understanding of what was going on and deemed me a “guinea pig” for medical science.

I ended up having 2+ years of total isolation, not being allowed out of a single room under risk of catastrophic infection or infecting someone else potentially with something I had.

I’ve had more radiation than a nuclear worker is allowed to have in their entire lifetime.

4 bone marrow transplants along with 9 months of unbroken isolation, never being let out of the room and only being allowed to see 2 family members.

The Consultants told me and my parents “we are going to throw everything we can at him and hope it doesn’t kill him”

I received adult chemotherapy drugs at adult doses at age 13.

Extreme “conditioning” for my transplants which involves basically frying your bone marrow with copious amounts of chemo and radiotherapy so it’s unable to produce ANY cells of your own.

I’ve had seizures and multiple bouts of pancreatitis from drug complications.

I’ve had so many injections and tests I’ve lost count.

I am extremely spiritual, had many introspective and somewhat “religious” experiences that I just cannot explain.

I have faced my own death and received an ego death for it.

I’ve dragged myself out of incredibly dark spaces mentally, once starving myself for 6+ months after coming out of the hospice due to suicidal depression.

After 8 weeks of being in the hospice I got “kicked out” because I was no longer dying and had created my own red blood cells after 100+ days post transplant. ( No-one had ever produced their cells after 50 days post transplant)

Once my DNR forms had been signed my mum decided to try something to calm me down from my existential dread.

I had been waking up screaming and getting incredibly angry I wasn’t dead yet and was just continuing to suffer.
Addicted to Cyclizene and multiple other drugs.

My mother gave me Cannabis. A tincture that was kept under the bed that all the hospice nurses knew about and allowed me to take as there was nothing else to do but let me die… What harm was there?

Immediately after taking my first dose of cannabis I was no longer addicted to Cyclizene, it was literally like a switch turned in my body and I never had another dose again. (this happened between my 6hr doses, first dose, aggressive and clucky, 2nd dose, didn’t even think about denying it)

2 weeks after taking the cannabis, I started to improve so much that the consultants and doctors ripped up my DNR forms and started testing me again.

Eventually I had created my own red blood cells and I had “officially engrafted” making my transplant a success.

11 years later and I’m still not sure if I’m going to just drop dead tomorrow or not as I was so incredibly rare.

I’m writing this as part therapy (Writing this brought up some difficult memories and made me a bit emotional 😅😂) and part curiosity if anyone has anything they’d like to ask or say about my experiences.

My mum has written a book about her experience of what happend to me so I’ve had many discussions about this but it’s always been from my mum’s side instead of my side.

So yeah 😅 AMA?