No changes health wise; my hand was just the same. An appointment had been set up for October for me to see the orthopaedic consultant at Walton with a view to setting up a date at Christmas for an operation. So I set off home on my own as at that time I had no worries about my future health. It all seemed straightforward.
I planned to stay in the UK for three days. I landed on Monday, 21 October, and was due to have my appointment on the Tuesday.
I need to tell you now about Helen Ranson! It was always meant to be. We’re soul mates; she’s my second sister. I met her the October before I went out to Mauritius. A friend, Lisa, introduced us at Rachel Stevenson’s funeral. We had known about each other for a long while. Helen walked with Rachel on a Monday night over the 10 years she knew her, and I was Tuesday night! Our dear friend had lost her battle with a very savage form of breast cancer after a 10-month illness. She had left two young children behind and we were all devastated. So we met, and Helen straightaway said, “Why don’t we start walking together in memory of Rachel?” And that was it! I was so relieved she said it. We started getting together to walk and talk about Rachel and to grieve together. But soon it turned into being about us, too, and we became best friends. We weren’t as disciplined with our walking as when Rachel had been with us, and often we would cheat and take short cuts on our circuit. Then we decided to play badminton together at the local leisure centre when the weather got worse so we could avoid the rain. Whilst playing badminton in December 2014, I had talked to Helen about my hand as I had just started to notice it. Helen had told me to get it checked out. This was also the time I first met Heike Williams, who was also to become a major part of my life.
So on Tuesday 22 October 2014, Helen offered to come with me for the appointment at Walton. Because I was only home for three days, it would at least give us a chance to chat and catch up. Viber calls always proved difficult to and from Mauritius. We thought it was just going to be a day out and that we’d have chance to have lunch together after the appointment. We had no worries as we set off, no idea what was about to happen. We were talking about Rachel on the way there and I remember saying “I need to let the grief go” – it was the week after the anniversary of her death.
I was expecting a 15-minute appointment. Helen went to get us coffees whilst I waited to go in, then she sat outside when I was called. I was quite relaxed to start with. The consultant examined me and checked me out. He said he didn’t think the issue was a disc problem. He said that he wanted to refer me on to see a neurology consultant, so I asked what he was thinking. He looked at me for a moment, paused, and said “MND”. I said “Jesus”. I felt as if my whole world had fallen into a black pit and that I was falling. It was a dreadful moment. Because he knew I was planning on going back to Mauritius, he rang through to another consultant and got me an appointment at the end of that morning’s clinic.
Doctor tally: 7
I left the room in shock, crying and in a complete blur. Helen said I looked grey. I couldn’t speak when she asked me what on earth was wrong.
Helen came in with me to see Dr Dougan, the neurologist consultant. She examined me quite clinically and was quite reserved, even abrupt, I felt. I didn’t warm to her. She wanted to redo the nerve conduction tests and was concerned about there being a lack of continuity in my care if I was going back to Mauritius. She managed to schedule me an appointment the following day due to the urgency of the situation. Somehow, I managed to drive home. I saw a double rainbow on the way, and we decided it was Rachel smiling at me.
I stayed at Helen’s for a time, trying to gather myself together. I had made lots of plans to see friends over the three days in England, but I couldn’t face any of that now. The thought of MND and going through the tests again terrified me. I didn’t know what to do with myself, how to be, what to feel or think. I decided to drive to my sister Debbie’s house and not back to Mum’s. I was too upset to face her and didn’t know what I was going to tell her at this stage. I needed more time to gather myself together. Debbie had agreed to go with me for the tests the next day so it was a good excuse to base myself at hers.
I drove to Debbie’s. I couldn’t eat or function. I was in total shock. I couldn’t get hold of Andy as he was at a Diwali party with Roshni. I couldn’t sleep; just had to wait for the phone to ring with details of my appointment for the tests the next day. Debbie’s father-in-law had died of MND so I tried to ask her husband what he thought without putting him under too much pressure. Of course, he couldn’t have an opinion and didn’t know what to say to me.
Wednesday 23 October 2014. I was completely stressed out going for the tests with Debbie. I listened to Helen’s relaxation CDs on my phone the whole time and it really helped to calm me down and keep me functioning. The tests weren’t quite as bad as the first time, and it helped that the surroundings were better and the staff spoke English. I felt safer.
We drove back to Mum and Dad’s. I told them about the retests but not about the potential MND diagnosis.
Thursday 24 October 2014. I was waiting for the call from Dr Dougan with the result before going to the airport, as my flight back to Mauritius was in the afternoon. I was actually in the queue for security when she rang. “I can’t give you a confirmed diagnosis at this point but there is evidence of motor nerve damage. I think you should prepare yourself and go and talk to your family about MND.” I was on my own at this point. I was devastated. It was just horrible, and I still had the 11-hour flight home on my own. I spoke to Helen on the phone. She was brilliant and calmed me down. She tried to keep me focused and functioning. We talked about managing my anxiety and fears on the flight home and using the CDs to help to bring my anxiety levels down. It was the most hideous time, but the CDs really did help. I played them continuously during the flight home. I was trying to behave normally, feeling like I couldn’t function, feeling lost and disassociated, not really there. In the meantime, I had asked Debbie to call Mum and Dad and tell them, as I couldn’t face the call.
Friday 25 October 2014. Andy still didn’t know anything. He met me at the airport mid-morning and took me back to the apartment. He was very supportive but dismissive of the MND diagnosis. It was too unbelievable. He didn’t realise how sure the doctors were. He had to go back to work so I was on my own again. I started to feel so ill – the stress and shock. I felt physically ill; I hadn’t eaten since Tuesday, nor slept properly. And the pressure was on me to try to behave normally in front of the kids. It was so difficult. I didn’t tell any of my friends in Mauritius; I didn’t want to acknowledge the situation was real, even. It was too difficult. Instead, I spoke to Helen on the phone. She was my rock throughout everything. There were many tearful phone calls between Mauritius and home. It was such a bad time; things couldn’t have been worse.
End of October 2014. I felt so ill, like I was dying. I was. I hadn’t eaten for a week and it was proving really hard to appear normal. I couldn’t resist the urge to Google again. I was desperately trying to find alternative medial conditions that fitted my symptoms. Anything with vaguely similar symptoms proved to be a hopeful option. I felt like I had been given a death sentence.
Things were difficult back home, too. I was finding it difficult to support Mum. Helen started to help on that front, too, with phone calls and visits. It took the pressure off a little, for sure.