My disease is considered terminal. Being nearly two years since my relapse, I must start this by being very grateful for life and if there is anything you can take from reading this, please appreciate every moment and breath because life can be extremely fragile.
It was 12 weeks ago that I landed back in the UK. While on the one hand, it is fantastic being home with Fiona, my children, and the rest of my family, it is also a tortuous time waiting for the medical results.
Waiting for results is hard enough, add a terminal illness into the mix, and it is extremely stressful.
My doctor in Florida took tests before I flew back after my 7 weeks of treatment. As soon as I arrived back into the UK, I had a bone marrow biopsy.
We were hoping that my bone marrow would be ALL CLEAR and that my immune function had significantly improved to the point where we could consider stopping the treatment.
The 14th December arrived, the week before Christmas and I received an email from my consultant from The Christie in Manchester. My bone marrow result was Positive In the Outer Quantitative Range (POQR) again, which means that the disease is still detectable at low levels.
A few hours later my results from Florida arrived, but only two of three. The missing one was the most important - measuring my immune system function. I called my doctor and he confirmed there was an error on their part and the blood draw wasn’t drawn.
To add to this already stressful situation, the financial challenges have compounded the pressure on us. The treatment and all the other expenses have cost over £250,000 plus our living costs for the last few years in the UK without a regular income.
I applied to my health insurance company to cover these costs and when they declined I launched a Go Fund Me Campaign.
After my first round of treatment, I stopped promoting the Go Fund Me Campaign.
We have bridged the financial pressures with funds we received from our life insurance. Our policies not only covered us with death but terminal illness too.
It took me 6 months to conduct the necessary research and send a detailed appeal to my health insurance company. I sent it on the 1st December 2017 - It usually takes 72 hours for the medical team to come back.
A week passed. Two weeks passed. Eventually, I found out the week before Christmas that my case had been changed into a complaint and passed to the customer relations team - They now had up to eight weeks to respond!
How could they do this to someone that is considered terminally ill? My mind went into overdrive. A few days later, the pressure got too much so I phoned them back in a state of frustration, fear, and anger only to find out that they had declined my request. They couldn’t tell me why, and I would have to wait for up to eight weeks for the full written response.
I felt the most stressed I have felt in a long time. For someone that usually puts on a brave face, I was feeling beaten.
It took me a while to pick myself up. I had to make a decision. Were these results good or bad and what were my next steps?
On the one hand, this whole situation is terrible. I still have signs of a life-threatening illness in my body. It feels like being in no man's land and, at any moment, I could step on a mine and the disease could flare up again and I could be on the road out of here. The increasing financial pressures weigh heavily on our shoulders as a family not knowing how many more rounds of treatment will be needed.
On the other hand, it’s fantastic news. I’m still alive and I’m beating the odds, the disease hasn’t progressed and if I continue to focus on my new goal of being healthy at 100, I can beat this!
It is more important now for me than ever before to have an empowering vision for myself and my family. I shall keep focused on my continued healing journey instead of thinking I am still in the eye of the storm. My ambition is to give my daughters away at their respective weddings, they are now 7 and 9 years of age. And who knows I may even live to be 100!
What I have learned from being a cancer patient has been invaluable and many of the elements of my new lifestyle are as important for cancer patients as they are for anyone else in getting healthy and staying healthy.
I have created THE ENERGISE ACADEMY to share my story, to inspire and motivate millions of people to get healthy and stay healthy.
Help ME to help YOU and join THE ENERGISE LIFE PROGRAMME now.
The first and exciting course is titled “Food Fundamentals” where you will learn the basics to heal, energise, and look after your body. There are another FIVE courses to follow where I will continue to unpack my kitchen and show you exactly what I do and how I do it.
So please, Help ME to help YOU and join THE ENERGISE LIFE PROGRAMME now.
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