09 May 2024
My reservoir of courage
“Within the stark confines of illness, I discovered resilience and a reservoir of courage I never knew existed.”
Shilpa Sehdev’s life was changed beyond all recognition by her leukaemia. And, incredibly, she now says not all of the changes were bad. Because while getting blood cancer in her teens took away many of her dreams, it led her to a successful career that has given her purpose and fulfilment. And the life she’s now able to lead is all down to the power of research.
Shilpa was just beginning her second year of University in Leicester in 2013 when she developed what initially fitted all the hallmarks of ‘fresher’s flu’.
“It was worst bout of flu you can ever imagine, and it just wouldn’t go away,” said Shilpa, 29, who lives in Berkshire. “I had a runny nose, blocked sinuses, muscle aches and fevers. I tried traditional Indian remedies for about ten days, then over-the-counter pharmacy stuff, then eventually saw the GP. He said it was freshers’ flu. I thought it was too bad for that, but I managed to keep going to classes. Then one day I was sitting in a lecture, everything went fuzzy and I collapsed. Uni first aiders were called, and when I came round, I was told to go back to my room in halls and rest. I called my parents who drove straight up from Berkshire to be with me. It took about seven hours between me ringing them and them getting there, and during that time I’d broken out in bruises all over my body. When they arrived, they took one look at me and drove me straight to hospital.”
At the reception of A&E at the Leicester Royal Infirmary, Shilpa collapsed again. She was rushed into the resuscitation area where she began having seizures. Doctors gave her oxygen and took blood tests. The results showed a big increase in her white blood cells, so she was given a bone marrow biopsy. Shilpa was diagnosed with b-cell acute lymphocytic leukaemia on 14th October 2013 at the age of 19.
“It just didn’t feel real. If I’m honest it still doesn’t even now. It felt like it was what you hear about happening to others but not you. It wasn’t just a diagnosis; it was a seismic shift in reality. And it happened so quickly. I had to immediately accept I was in there for weeks. I felt out of control – but I did feel safe.”
Chemotherapy was immediately started and lasted six weeks. Shilpa was then allowed home but continued back and forth to hospital for a total of four rounds of chemotherapy. During that time a growth was also discovered on her spleen. She received radiotherapy to treat it, but then developed blood clots around the organ and had to have multiple surgeries to remove them. She also developed sepsis and was in an induced coma for two weeks.
Shilpa was eventually told she was in remission and it was decided to hold off on a stem cell transplant, to have it at the ready if she relapsed. She took an 18-month gap in her studies, but continued to work as much as she could from her hospital bed, and successfully graduated in 2015.
“That year I was at the peak of health then and things were going really well,” said Shilpa. “I’d even been off travelling to Zambia, Zimbabwe, South Africa and Singapore for a month. But then I started to feel incredibly tired. Tests showed my bone marrow had been compromised by the treatment itself, and I was offered the stem cell transplant.”
Stem cell transplants require an initial substantial dose of chemotherapy to kill cancer cells and wipe out the patient’s bone marrow and immune cells ready for replacement with donor cells. Infertility can be one of the side effects. Shilpa decided she wanted to keep the option open of having a family one day, and she didn’t meet the NHS criteria for egg freezing. So she voted to continue with a blood transfusion every month.
This ongoing treatment and her appreciation of the donor blood that was keeping her alive ended up having an extraordinary and unexpected benefit for Shilpa. After seeing a recruitment drive, she decided to join the NHS Blood and Transplant Service in Slough. Her role as a supervisor gave her purpose, and a deep appreciation of the value of donating blood.
On 15th August 2022, Shilpa was at work screening a patient, when she stood up, immediately felt light-headed, and collapsed. She was rushed to A&E at the Royal Berkshire Hospital. Tests revealed her blood haemoglobin was down to 54 – it was supposed to be 120. Shilpa was again admitted to hospital and the stem cell transplant discussed. But she was also offered a new research drug that stimulated her own bone marrow. Shilpa grabbed at the chance to try it and had monthly injections for a year. The drug worked and her bone marrow is now functioning well. However, during this time Shilpa suffered further setbacks.
“I’m pretty invincible but this was a bad time,” said Shilpa. “I had more major surgery on my spleen as it kept clotting, and I went into sepsis again and spent four months in ICU. Fluid had built up around my heart and I was told I needed a further operation to drain the fluid. The consultant said there was just a 1% chance the needle would pierce my heart. I turned out to be the 1%. I woke up three days later – they’d had to put me in an induced coma to keep scanning me while my heart healed and to ensure I wasn’t bleeding internally.”
On 24th April 2023, the day before her 29th birthday. Shilpa finally left hospital. After a phased return to work she is now back full time and has recently been promoted to Plasma Engagement Coordinator and training facilitator for the South West Region of NHS Blood and Transplant. “I love work. I have such an amazing manager and work colleagues, it’s a form of therapy for me. If I didn’t have my work I would feel like I didn’t have much purpose. Having been through so much at such a young age, my mental health did plummet. I haven’t been able to be in a relationship since I was 19 because of my illness, all my friends are progressing in life and I am in a parallel universe not moving. So work is really important. It’s so rewarding being able to talk to patients and donors. I do speak to donors and share with them that I am a regular recipient – the response is phenomenal when they see a living example of the reason they donate.”
Shilpa still has monthly transfusions and warfarin to thin her blood. And she’s so keen to get the message across about the importance of research of the type that developed the drug that she benefitted from that she’s set herself an incredible £1000 fundraising challenge for Leukaemia UK. On her 30th birthday on 25th April 2024, she travelled to Brackley in Oxfordshire and do her very first skydive.
“Within the stark confines of illness, I discovered resilience and a reservoir of courage I never knew existed. This skydive isn’t just about celebrating a milestone, it’s about giving back to a cause that has profoundly impacted my life. I owe my existence to charities like Leukaemia UK. Much like facing the challenges of leukaemia, skydiving requires courage, resilience, and a leap of faith. It’s a symbolic way of embracing life’s uncertainties while supporting those who are battling against leukaemia.”
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