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Janine’s BBC Lifeline story
“My symptoms initially consisted of breathlessness and sore gums, followed by a flu-like illness and dry cough. I developed lumps under my armpits. My work colleagues noticed I looked pale and I was losing weight. The breathlessness worsened, I was constantly exhausted, lost my appetite and developed unusual haemorrhages in my eyes. As an optometrist, I knew these could be a sign of acute anaemia or leukaemia.
On 21st November 2019, two days before my 55th birthday, I was diagnosed with AML. I didn’t know then that I would spend my birthday, Christmas and New Year in the hospital where I had previously worked.
I was admitted immediately and needed three units of blood straight away. All I could think of was my daughter, Hannah. I had brought her up alone since she was 18 months old and we were extremely close. She had worked so hard to secure a place at Veterinary School and had only been at university for six weeks.
Before I could even begin my chemo, I had to fight a bout of sepsis caused by an infected Hickman line. But by the end of my first round of chemo, I was in remission. The second round was far harder mentally as the enormity of my diagnosis hit me. I developed toothache which kept me from sleeping and then went into a downward spiral of anxiety and despair. The mental health toll of the enforced isolation weighed heavily on me and I was very grateful for the support of the Leukaemia Care nurse and the hospital chaplains.
After my second round of chemo, there was no disease in the peripheral blood and so the consultant thought I may not need a stem cell transplant. It was decided that I would have one more round of chemotherapy. By now, the Covid pandemic had taken hold. My daughter came home from university and we shielded together. She had to drive me to the hospital daily for neutropenic monitoring and sit in the multi-storey car park revising for her first-year exams. As the Covid 19 figures kept rising, my neutrophils were plummeting. Hannah and I became more and more anxious until the day came that I had to be admitted. I hugged her not knowing whether I would see her again.
I managed to cope quite well with the third hospital stay, despite having no visitors and very limited contact with the doctors and nurses. And I was delighted to discover that I was in full haematological remission by June 2020. But at the back of my mind, I was worried about recurrence.
I contacted Leukaemia Care for funding for counselling for myself and Hannah and also applied for a buddy. In the meantime, I tried to get back to normal life.
But shortly after returning to work in May 2021, I received the dreaded phone call telling me that I was MRD positive. I underwent a gentle, targeted chemotherapy this time, followed by a stem cell transplant.
My buddy, Judith, a stem cell transplant survivor herself, was an invaluable support during this period, helping me through this next stage of treatment. The mental side of leukaemia is tough, so having someone who understood exactly what I was going through was a great support. The fact that Leukaemia Care provides specialised buddies matched to your type of leukaemia and treatment really is a lifeline. What started out as regular supportive phone-calls with Judith has developed into a firm friendship and despite living in different parts of the country, I now look forward to our face-to-face get togethers…”
Judith’s BBC Lifeline story
I was diagnosed with acute myeloid leukaemia (AML) in August 2014. I had four rounds of chemotherapy as an inpatient, followed by a bone marrow transplant in January 2015. I had chronic Graft-versus-Host Disease (GvHD) and have been left with ongoing health problems as a result.
My initial recovery was very slow and frustrating. No one can prepare you for the debility and weakness following a transplant, but I remember receiving invaluable tips from fellow patients who had been through the same experience.
Unfortunately, I was unable to return to my much-loved career as a nurse of 43 years, so I took early retirement and concentrated on getting well, taking on new hobbies, volunteering for The National Trust and fundraising for Cure Leukaemia. However, I missed nursing, and believed I could still use my experience and skills in a worthwhile way. Remembering how fellow patients had helped me, I applied to be a buddy for the Leukaemia Care Buddy scheme.
In 2021, I was paired with Janine. She had recently relapsed and was anxiously waiting for a stem cell transplant. Like some of the other people I had buddied, she was understandably apprehensive at first, but over weeks and months of regular phone-calls, our friendship developed.
I was able to be a listening ear and offer reassurance, understanding and support at a time when she was full of fear, anxiety and questions. I knew from my own experience that sometimes the best bits of advice came from patients who had been through the same experience. The practical advice in particular can be priceless, such as remembering to take your own mug and pillow in to hospital. After all, we all need some home comforts.
I tried to be positive and encouraging towards Janine, especially as I was seven years post-transplant when we were first introduced. Of course, I have had my fair share of complications and setbacks, but despite these, I am doing OK. Having been through it myself, I could fully appreciate any concerns she had, physically or mentally.
Despite having excellent medical and nursing support and wonderful family and friends at the time of my own diagnosis, I didn’t want to burden my loved ones with all my concerns. In many ways, I wish the buddy scheme had existed back then for me. You can never underestimate the importance of sharing your experience with another patient who totally understands what you are going through because they have been through exactly the same.
The benefit you get from being a buddy is not just one way. Janine and I have been able to offer one another mutual support and there is no doubt that my involvement in the scheme has brought some purpose and usefulness back into my life.
I started out hoping to be able to offer Janine some help and support at a difficult time for her, but a wonderful friendship has developed between us which has no doubt brought untold benefits to us both…”
BBC Lifeline Appeal
Watch and donate to the BBC Lifeline Appeal to help ensure people like Janine and Judith get the support they need from Leukaemia Care during their most difficult times.
Support services
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).