It’s been a few years now since the disaster of India, but it’s taken me this long to gather my thoughts.
We re-mortgaged our home, fundraised to hell and back and got enough money for HSCT treatment in India, we couldn’t afford anywhere else.
It was a disaster, one that even to this day still haunts me.
There were problems from day one; lack of heating kept my room in cold conditions to ‘starve viruses’. The heating was actually broken but it took a week for them to actually admit that. The admin from hell gave my carer a cold, who then passed it onto me, which delayed the start of treatment. My carer was an amazing man who had previously been to the same hospital and had HSCT. He was shocked by the lower standards and changes.
Communication was very difficult. The main consultant insisted that everyone spoke excellent English but the nurses really struggled. I was ignored in conversations a lot due to being…. Female. Yes, Female – it’s a culture thing, still very difficult to get your head round.
So, testing started, a few days of being wheeled in the wheelchair to have all my major organs checked and scanned to make sure they could cope with the treatment. Injections in the belly to entice the stems cells out of the bone marrow and into the blood stream. Lines put into my neck to extract the stem cells, two weeks delay when I was told the drugs to help me through the HSCT were destroyed as they were faulty, more were being sent. The doctor was insistent that this was the case, but my friends back in the UK found no evidence that this was true, all the companies that produced the drugs had no knowledge of this.
Every day I would be told the treatment would start tomorrow, tomorrow never came. Ironically, I did find out there that I am allergic to Iodine. Having had to sit in a bowl of iodine several times a day to keep ‘areas’ clean.
Finally realising there were too many problems at the facility and lies being told & I just couldn’t take it anymore, desperate calls back to the UK to get flights home. The consultant apologised that things had not gone as planned. When I asked him for a full refund, he nodded his head, my carer witnessed this. When asked about refund of flights he said no. Refund will take a few days he said.
My carer and I left; the hospital kindly provided a lift back to the airport. I flew home shattered, depressed, angry, disorientated.
I knew that I was heading for a breakdown, I was standing on the edge wanting to jump, I’d had enough. I fortunately had the sense to get hold of my GP. I explained what had happened, how I was feeling. To this day I am still on antidepressants. But they have saved my life.
My family made several attempts to make contact with the consultant for the refund, he refused to acknowledge that he would refund the full amount, even though it was the hospital that broke the contract by not being able to fulfill it. This went on for months, eventually the hospital gave back barely half of the money. Going so far as to discredit me online, blaming me. It’s ironic that their behaviour online lost them patients who chose not to go, seeing that this wasn’t a reputable hospital.
There is so much more to this story, but since time has passed it serves no purpose to drag it back up.
I needed to start looking to the future. After several months I gained the courage to quit my job, one I really enjoyed doing. Unfortunately, it was also 6 years of bullying, berating, lack of understanding from management. I gave them all the information they needed to understand MS. They chose to ignore it. They went so far as to dictate to me what I could say on this blog, I wrote the truth, they told me to change it. I am so glad I left.
I went full time with FabFudge. It’s not been easy, but it’s been an amazing adventure.
January last year I was diagnosed with ME/CFS.. great I’m collecting acronyms as disabilities. MS & ME/CFS.
This has pushed me further with FabFudge. I moved the company from our home kitchen to a commercial kitchen which I share with two other chefs & it works really well. We all get on, working around each other.
So, time has moved on. Since I have ME/CFS it’s unlikely HSCT will help me.
No more fundraising, well not for me anyway. But there are more people out there in the UK that are in that same boat of fundraising.
Fortunately, this is where AIMS comes along. Auto Immune and Multiple Sclerosis (AIMS) Finally a support charity that actually supports you. I’m asking that if you wish to donate to the HSCT cause then this is the first charity in the UK that is registered and dedicated to helping people to have access to HSCT. I know the team, none take a wage, it’s all voluntary.
I’d like to thank everyone who followed my journey & supported me. I’m sorry it didn’t go the way it was planned. But I am still alive, something I really believe would not have been the case had the treatment taken place in India.
Especially much love to my husband and son who kept me going, they still do. xx