Ashia, from Bolton, was diagnosed with multiple myeloma, a rare, acute form of blood cancer in 2009.
Ashia’s best chance of a cure was a stem cell transplant which involved eradicating her diseased cells with chemotherapy and replacing them with cells from her sibling.
Out of the 103 people who are diagnosed with blood cancer each day, 70 per cent will need access to stem cell registers, like Anthony Nolan, to find an unrelated donor. However, as a British Pakistani, there is only a 20 per cent chance of finding a match.
Eight years on from her transplant, Ashia has joined Anthony Nolan to campaign in raising awareness of the need for people to join the register, to give those with blood cancer more hope of finding a donor.
Tell us a bit about yourself and your background
My name is Ashia and I am 45 years old of Pakistani ethnicity, living in Bolton. My parents moved to England in the 60s and I was brought up here with my five siblings until I moved to Denmark in 1990, after I got married.
I lived in Denmark for 19 years, moving back in 2009. My husband and I have four children, three boys and a girl.
After moving back to the UK, I was diagnosed with multiple myeloma, a rare, acute form of blood cancer.
When did you find out you had multiple myeloma? Can you tell us a bit about that and how your journey has progressed since being diagnosed?
In 2009, I started feeling unwell and had a series of brief symptoms which I couldn’t explain. After a trip to A&E, a blood test showed I had multiple myeloma.
At the time of diagnosis, my daughter was only 18 months old – she was just a baby. I was so happy at the time, I had three boys before my daughter and was longing for a girl when she finally arrived!
When I was diagnosed I knew I just had to get through it for them. It has been a very difficult journey, especially in the beginning when I didn’t know what to expect or even anything about the illness I had.
After my diagnosis, I quickly began receiving chemotherapy and later found out I needed a stem cell transplant. To find a donor for me, all five of my siblings were tested to see if they would be matches. It really surprised me only one of them, my sister, was a match. It was only then I truly realised how difficult it is to find a match for those who cannot rely on family.
Eight years on I am feeling stronger and happier. I’m looking to the future and want to raise as much awareness as I can and help others in the same position I found myself in.
How have you coped with the challenges that you’ve faced since?
Having the support of my family has helped me through. They knew what I needed and how to make it easier for me, especially in the early stages of my illness when I relied on them the most.
As time went on, I found I had the energy and the determination to motivate myself through this difficult stage. I felt like I needed to push myself and only by doing this would I be able to meet my goals.
What support have you received? Do you have a strong support network of friends, family etc. or have you been supported by other networks?
I have a large family who’ve been my support network. They’ve been strong and motivated me during the whole process. I also had a good experience with the NHS and the professionals who treated me throughout my illness.
The support I received at the Manchester Royal where I had my transplant was fantastic. They were incredibly supportive and the specialist nurses were amazing.
Even after my treatment when I was going to the clinic for check-ups to speak to my consultant, I felt they were there for me.
How did you become involved with the campaign for Anthony Nolan?
It’s been a long time now, but I think the first I heard about Anthony Nolan was through Macmillan, the cancer support charity. I have been a member of Anthony Nolan’s patient panel for a few years now, advising on Anthony Nolan’s communications and helping the charity give a voice to patients.
Earlier this year, Anthony Nolan contacted me about the Make Blood Cancer Visible campaign for Blood Cancer Awareness Month in September and asked if I would like to be involved and share my story.
The campaign was launched on Monday (4th) with the unveiling of an installation created by designer Paul Cocksedge. The piece was made up of 104 three-dimensional life-size names in Paternoster Square, London, representing the 104 individuals diagnosed with blood cancer every day.
The installation was designed to raise public awareness and highlight the personal experiences of myself and 103 others who have had treatment for a range of blood cancers.
I was so happy to finally be able to help raise awareness about the need for donors, especially within the Asian community.
How important is it for people to join the Anthony Nolan register? How will they help people if they register?
Out of the 103 people who are diagnosed with blood cancer each day, 70 percent will need access to stem cell registers, like Anthony Nolan, to find an unrelated donor. However, as a British Pakistani there’s only a 20 percent chance of finding an unrelated match.
One of the best and most important things someone can do in their lives is save a life. If more people get involved, more donors can be found and more lives can be saved – it’s simple.
You are saving a family from being ripped apart. The whole family is affected – children, parents, grandparents, siblings. You are not just helping one person, you are helping a family or even a community. It’s just so important for people to get involved.
What do you hope to achieve from the campaign?
People need educating on what stem research will entail. Nearly 90 percent of people give their stem cells through peripheral blood stem cell collection. This is a simple process, similar to donating blood, so people’s lives and health shouldn’t be affected.
While my parents were desperate for me to have the transplant, they were also concerned about the effect becoming a donor would have on my sister’s health. I think people are scared to become donors because it will impact their lives and health, but this isn’t the case.
Religiously, I think some people also believe stem cell donation isn’t allowed. When I was diagnosed I was unsure what was accepted and what wasn’t within my belief system. I went to talk to my Imam to make sure I was able to have the transplant in line with my beliefs. He confirmed stem cell donation was absolutely fine.
Religious leaders have an important role to play in raising awareness about stem cell donation. This would hopefully reach more people in minorities where donors are needed.
What else do you think could be done to raise awareness of the blood cancer? Should the government/NHS be doing more?
I think more needs to be done to reach young people who are less likely to donate. Going into universities for talks and informing young people of the difference they could make is vital to attracting more donors.
The Government could also do more in terms of raising awareness and funding. There is only so much charities can do. They do absolutely all they can but are limited by funding and there’s always more people who need help.
Do you have any advice for anyone going through a similar thing?
You need to be patient, it will come. But most of all you just can’t give up. It’s easy to say, but when you hear it all the time you do start to listen – my family were saying it to me all the way through my illness.
You also always need someone to speak to. Whether a doctor, a nurse, friends or family, everyone needs someone to talk to. You need a network – even if the network is made up of just one person. Speaking to someone about everything you are going through just makes things feel less scary.
While I was going through my illness, my father passed away. My dad was my backbone. He was the one who gave me the advice I would pass on to anyone going through a similar situation: don’t give up. Have the willpower, have hope, keep looking to the future.
If you are aged 16-30 you can join the Anthony Nolan register: www.anthonynolan.org/join