20 Dec 2023
‘I’m determined to do everything I set my heart on’
“At the start of 2023 I had funny turn in Tate Modern and had to ask someone to help me sit down,” said Sonia, 60, who works as a public speaking coach and lives in Finchley, north London.
“I also had shortness of breath. I put it down to what I thought at the time was a complete burnout. In the year before this I had lost four very close friends and family, including my beloved dad who’d suddenly collapsed and died from a brain aneurysm, so I entered 2023 with a lot of grief. My mother suffered with mental illness and I’d started to wonder if, after all, I had that gene. I just felt physically and mentally low, unable to really function on my normal levels.
“I had a blood test at the GP and it showed I had a very low blood count and a fatty liver, which he said could well be down to stress and that I should recover. But the breathlessness did worry me.”
“Then in March 2023 I was speaking at an event and could hardly catch my breath. I went for another blood test the following day and two hours later 111 rang me to call me in to hospital as I was severely neutropenic. I’d never heard of it and consulted Doctor Google. Oh well, I thought, I know I’ve got a low white blood cell count at the moment, that’s probably all it’ll be.”
Sonia went to the haematology ward at Barnet hospital. She was given multiple blood tests and then a chest scan which showed pulmonary embolisms in her lungs. She was told the large clots passing through her heart probably accounted for her funny turn at the Tate and could have killed her. Sonia also had a bone marrow biopsy which was inconclusive. With blood thinners and advice on how to live with neutropenia, Sonia was sent home to wait for her blood cell count to recover.
“With the neutropenia I was living a very cautious life, being aware that any sign of infection put me in serious risk of neutropenic sepsis. I had a rather nasty bout of bleeding haemorrhoids which made life a bit uncomfortable to say the least. Then one evening my temperature spiked severely and my heart rate was over 150 while resting. An ambulance whisked me back to Barnet hospital where I was given antibiotics and was told I was to be kept in as I had gone into sepsis, and could have been dead in 48 hours.
“Another bone marrow biopsy was done, but by that time I was feeling OK, just a little shocked by the urgency of the temperature spike and uncomfortable with the rectal bleeding. I sent my husband back to work with a view to seeing him in the morning. Then the haematology doctor put her head round the door and asked me how long it would take for Tony to get back to the hospital. Her face was serious and I knew that bad news was probably on the cards. It was.”
On the 15th June 2023, Sonia was diagnosed with an aggressive form of acute promyelocytic leukaemia (APML). She was sent by ambulance to University College Hospital London.
“I was in a daze and my husband joined me an hour later, pale with worry, but trying not to show it,” said Sonia. “They started me on Tretinoin and arsenic immediately before I left the ward at Barnet. Once in UCLH I was given more drugs, including heavy antibiotics as the infection was almost certainly caused by the bleeding haemorrhoids. Chemotherapy started properly the next day and I was under very close supervision with visits by nurses every hour. I didn’t really understand how dangerous this APML was until the consultant explained that it can cause clotting and bleeding. And any blood in the brain would be fatal, as would an embolism or more blood clots in my heart.”
Sonia was in hospital for four weeks having her first round of chemotherapy and blood transfusions.
“I experienced the classic side effects of nausea, constant headaches, chapped lips, thin skin, rashes and neuropathy in my fingers and feet. However, these side effects are becoming less and less as I guess my body is responding better and I firmly believe in mind over matter.”
“I also like to try and bring humour to everything. One thing that really made me laugh in hospital was when I first got diagnosed it was the junior doctors strike. A nurse came in and said they would need me on the picket line. I thought this was a bit unusual but I was happy to help and started to get dressed to go outside. She came back in and said what are you doing? I said you said I was needed on the picket line. She said no, I said we need to put in your PICC line!”
After her first chemotherapy cycle, Sonia was allowed home and has continued her chemo with day visits to hospital. She’s now at the end of her third cycle.
“I’ve always been an optimist and decided to chronicle the ‘adventure’ with leukaemia by writing a blog to raise awareness and keep my friends and family informed by amusing them, rather than scaring them to death,” said Sonia. “I called it Chemo Chameleon. My initial concern was that people would read it and stop hiring me for work, and I also thought maybe people would think it was too light hearted as I know what I am going through is a very serious thing. But it had two thousand visits within three weeks. I’ve had contact from around 20 people around the world wanting to share their stories and being very kind to me and thanking me for amusing and helping them.
“As the ‘fixer’ of the family, I was suddenly unable to be the support to everyone else and had to trust that people could look after me for a change. My darling husband Tony was incredible and showed me sides to him I had never expected. So supportive, upbeat and keeping everyone informed. I went into our fish and chip shop recently and they said the day I was diagnosed he came in there and cried – I had no idea that happened, he always remained so upbeat.
“Neighbours helped him by cooking meals and coming to visit him. He had to learn how to do more things around the house and my neighbours showed him how, and he recently said that in some ways the leukaemia has moved us both on a bit, given him new skills, and made me take help rather than look after everyone else.
“I’ll also never forget the kindness and care that the UCLH and Macmillan Cancer Care team have shown me. They set me up with a buddy who had been through the same cancer as me, with whom I could share information, experience, and confide in. It was so good to have somebody who could be neutral and fully understand everything I was going through. I’ve also had a wonderful therapist and as I am now really only just starting the process of grieving my Dad. I really feel like I also now have a mission as a coach to help people through the trauma of leukaemia and to be able to see things in a new way.”
Sonia has been told she was now in remission but is still having continued rounds of chemotherapy to “shock the living daylights out of the bone marrow so it starts behaving properly and releasing healthy blood cells.”
“I still have to be careful owing to the immune suppression that chemo gives you, but I feel confident enough to travel on public transport as long as I mask up and carry sanitiser with me. Humour has always been my default and although I understand that APML could have taken my life within two weeks, I don’t think I let that get in the way of trying to see the light in the darkness. Sometimes the impact of it hits me and I can drop my mood, but most of the time I have a positive attitude, do as I’m told and believe truly that a healthy mind can help to heal an unhealthy body. The psychotherapy has helped me see a positive future that is based on the day or day ahead, rather than a ‘life after cancer’ which could be a little while off still.
“I have always been an active person, juggling two or three jobs and travelling the world to coach clients. All that has stopped of course and it has had a massive impact on our daily lives. But I have escaped death three times in the past year so every day is precious and I have vowed never to use the phrase “One day, I’ll …” or “it would be lovely to …”. I’m determined to do everything I’ve had my heart set on. I’m creating a series of fundraising concerts with my husband, and I want to get back to driving classic buses in my spare time. Who knows? This might all come back again, but the prognosis is very good for treating this particular leukaemia. I’m looking forward to coaching people, writing more childrens’ books (the Granny Franny Adventures) and will eventually be able to exercise again!”
Want to read more about others who have been diagnosed with leukaemia? Read Joel’s story and his recovery from sepsis.
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