Stories

Becky

I am 29 years old and live in Cumbria I was told earlier this year (2015) that I needed a stem cell transplant for a rare genetic mutation called GATA 2 deficiency.

After 7 years of various illnesses including multiple blood clots my health has gradually been deteriorating, so my consultant sent me for a bone marrow biopsy which was abnormal and resulted in me going to London to see specialists.

As I went into the consulting room I was expecting them to say finally they had put all my illnesses together and maybe I would need a different medication to add to my growing list. Nothing prepares you for your consultant saying you need a stem cell transplant.

As an artist I hope to be able to do some artwork while i’m in hospital maybe I can design my own range of get well cards! I currently work part time in an art gallery and do my own artwork painting on silk and making jewellery.

You can follow Becky’s journey on her blog.

Becky and her dog

Abyaz

Abyaz was diagnosed with Juvenile Myelomonocytic Leukaemia when he was two years old and after his first bone marrow transplant he developed Acute Myeloid Leukaemia. In the following video Abyaz recounts his very difficult journey – Abyaz’ video

Abyaz

Jessica

At the age of 24 I was unexpectedly diagnosed with Acute Myeloid Leukaemia. I successfully beat it after undergoing four gruelling rounds of chemotherapy, but 2 years later the disease returned and I was told that alongside more intense chemotherapy, I would also need to have a bone marrow transplant. Both times I have dealt with the physicality of the disease pretty well and faced the treatment head on, confident and willing to beat it. But it has been the psychological effects of having cancer again and the experiences that came with it that have left emotional scars, which have affected most aspects of my life.When I relapsed I was not only dealing with the trauma of having to go through a bone marrow transplant, something that was completely unknown to me, but I was also grieving for my father, who had passed away only 3 months earlier. Managing all these feelings on top of experiencing intensive chemotherapy again was a struggle, but having a psychologist to guide me through this time was invaluable. Being able to talk to someone who was not emotionally connected to me, who essentially had an outside and experienced view but was neither my nurse nor doctor, was refreshing and a source of great comfort. Having someone guide me through an emotional minefield made me feel as if I were not alone. My psychologist was able to give me strategies to deal with the situations I faced and prepared me for what was to come as I neared the scariest part of my treatment.

Personally I have needed more help after than during my treatment. Once I had experienced the physicality of the cancer I have now been left with the social and emotional fall out. While my body is healing, my mind is now having to process what I have been through and that can be overwhelming. Even now, 6 months on from transplant, I am encountering issues that are only just surfacing as I begin to get my life back. The cancer created a ripple effect and permeated most aspects of my life from my appearance, to my friendships, my employment, my personal relationship and my ability to socialise; none of which can be solved by the simple popping of a pill. These are essentially the invisible symptoms of cancer and seeing my psychologist regularly allows me to deal with these effects as and when they arise.

Debbie

I was first diagnosed with chronic lymphocytic leukaemia in 2011 when in university. The diagnosis was a result of urgent blood tests, which my GP sent me for because of other severe health problems. I wasn’t expecting anything to do with cancer as part of the problems found in the result. After my first blood test I was asked again to take an urgent blood test to confirm the cancer after an unexplained bleeding and fatigue.

It was very difficult for me to accept my disability at the beginning, as I did not fully understand what will happen next and other scary thought running through my mind. With the help of my specialist MacMillan nurse I did get to know more of my illness and what will need to be done for and the changes that will need to take place in my life. My treatment started almost immediately after being admitted to St Georges Hospital in Tooting. I was given drug therapy, which included high dose chemo and tablets. For me having other health problems apart from the leukaemia I was getting weaker and ill most days so had to stop my degree and concentrate on treatment and therapy sessions to deal with my fear and stress.I have ever since been attending hospital appointment 2 times a week for the past 2 years and that has been very intense for me.

The past years have been very difficult form me with getting treatment and trying to concentrate on having a degree. I did apply to enter into higher education again after a year of treatment to keep me busy and occupied from thinking of my illness as it was deteriorating instead of getting better. Upon all my effort to work to support myself, as I do not have any family, having treatment gave me limited energy to find work and carry out daily activities, as I should. My disability has also put me on a position of struggling financially even though I do receive DLA. For the reason of me being in full time education, I am limited to government funds so I do live on my student loan and DLA payment. There have been many times I was asked by my doctors to stop education again ad concentrate on my health and treatment because of poor health and non respond to treatment as it was advise too much of fatigue wont help getting me better. I took weeks off but started studying from home. I have been doing that and proud of myself to be a graduate regardless my poor health.

Receiving £300 from ELF is going to help me so much with travel in and out of various hospital, psychiatric and dietician appointments to help me deal with my disability. I am still receiving treatment, as it will be an ongoing thing to keep me strong and living.

I however have now come in terms of my health situation and happier in myself as I believe I can still achieve so many things for my life regardless of treatment and days I feel weak and ill.