Who am I?
I'm someone that wants to live - a wife, a daughter, a sister, an aunt, a niece, a cousin, a friend, a colleague and sometimes a pain in the butt.
In February 2017, at the age of 34, I was diagnosed with Stage 4 Hodgkin's Lymphoma
It sounded bad but to be honest I felt slight relief at a diagnosis after 2 years of horrible symptoms and mental anguish.
Treatment on the NHS started quickly in March 2017, with a 6 month course of chemotherapy every 2 weeks.
It wasn't easy. It was definitely scary. It was the start of a new life for me and everyone around me.
After 2 months a PET scan showed remission (although I was still in and out of hospital with various infections) and thought ‘’could this be a sign of my immune system fighting back’’?
However, a PET scan at 6 months showed it was back and aggressive - on my spine, ribs, lungs, hip and lymph nodes (everywhere!).
I needed a second type of treatment.
I received this new treatment in November and December 2017.
It was harsh (to say the least) and most mornings I was still being sick as I arrived at the hospital.
A PET scan in January gave more bad news - the drugs had no effect on the cancer.
I needed a third type of treatment.
I was referred to UCLH Macmillan in London.
If you ever end up in a life or death situation like mine, this place and the people are amazing.
They helped me secure a place on a trial comparing a new drug to one that was currently being used by the NHS.
The new drug was showing particularly good results for my type of cancer but, to my despair, I was randomly placed to receive the drug that is already available.
Another 2 months passed and another PET scan showed mixed response to the currently available treatment
The cancer had cleared in some areas, but progressed in others – meaning that the current drug was no longer effective.
Was I running out of options?
I needed a fourth type of treatment.
The next session of chemotherapy was horrific - I was in hospital for 9 days and it resulted in me collapsing and having problems with my kidneys.
After 2 days at home I had to return to hospital as I had contracted sepsis.
2 weeks later, I had to receive another 5 days of this chemotherapy.
Another PET scan showed these treatments had made no impact.
The cancer is now in my liver, abdomen and in more areas on my lungs.
Update; Now having undergone further treatments of Pembro and mini-LEAM and spending weeks in hospital with sepsis, pneumonia and flu there are no more options funded by the NHS apart from palliative care.
A treatment was proposed to me by the specialists at UCLH Macmillan.
This drug is legal and available, but it is not available on the NHS for Hodgkin's Lymphoma.
This drug called Panobinostat.
The treatment costs an estimated £120,000
With this drug my consultant believes my cancer could be put into remission.
Which would mean I could finally have a Stem Cell transplant - which presents its own challenges (and is a hurdle for another time!).
I need to find a way to fund this hopefully lifesaving treatment.
To do that I need to call upon the generosity of you.
Please help. Every penny counts.
If you are unable to donate money, please consider signing up to the stem cell registry (link below).
They desperately need more people registered and the test is a simple swab of the mouth that you send away in an envelope.
Thank you for taking time to read and share this,
Jade xxxStem Cell Registration