A brazilian woman with shaved hair with another woman also brazilian with her arm around her

'I want to celebrate overcoming this horrible illness by giving a little bit back' - Bianca reflects on a year post-transplant

April 26, 2022
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Today Bianca is celebrating her one-year transplant anniversary. Recovery has been a long process and at times she says it was really hard to keep fighting, but the thought of seeing her children growing up was the strongest motivator of all. She has a second chance of life thanks to her donor and wants to share her story to help others get that chance. In this blog she shares her journey so far.

It was around mid-2019 that I started to feel like something was off. I’ve always been very aware of my body and the way I feel. After many tests, over six months, they discovered that I had Aplastic Anaemia. It was really difficult because it’s very rare – at the time I think I was the only person in Nottingham Hospital to have it. Then Covid started, and they didn’t know what my treatment should be or if it would be possible. It was very scary. 

I had several treatments but unfortunately, they didn’t work. My condition was getting even worse. I needed a stem cell transplant. Neither of my sisters were a match. Fortunately, though, they found an 11/12 match for me on the register – in Brazil.  I was unsure if someone would be kind enough to go into hospital and donate their stem cells for a stranger. Covid was pretty bad in Brazil at the time, and I thought they would probably say no, to keep themselves safe. I was very afraid. My condition was declining every day and I was more and more dependent on blood and platelet transfusions. Eventually we got confirmation that the donor was happy to go ahead – that was the most amazing news, I was so emotional.  

A woman with dark hair in bed surrounded by cuddly toys
Bianca's daughter surrounded her with all her friends, so they could look after her

Because of restrictions my family weren’t allowed to visit, so it was difficult going through it on my own. I had some side effects but eventually everything settled, and I was able to go home after three weeks. I was very happy, but I was also feeling quite insecure. At the hospital there’s someone checking on you every couple of hours and something’s wrong they can deal with it straight away.

The first couple of weeks were the most difficult. Even though I was home, I couldn’t mix with my family. I had to be in a separate room. I was so afraid of catching something and going back to hospital. My body had been through so much and I was getting very anxious about the things that could potentially go wrong. My partner took me to see a specialist nurse so I could talk and open up about how I was feeling. She reassured me that it was normal and that it takes time for your body and mind to process, but things would improve. The specialist nurse has been wonderful. She continues to support me.

It’s been difficult accepting that it’s going to take a really long time before I feel like myself again.

I started to feel better psychologically, but with ups and downs. It felt never-ending. People think after the transplant your life will change magically, and that doesn’t happen. It’s also hard for my family. My partner was expecting me to come home and have a couple of weeks recovery, like many other surgeries, and then life would go back to normal. It’s been almost a year and I’m still having difficulties.  

I reached out for counselling through Anthony Nolan. It has helped me a lot. The fact that they understand the transplant really helps, I didn’t have to explain the procedure and everything I went through, I could just start where I was. 

I went back to work after nine months off on a phased return, and my company has supported me greatly during this whole period. They recently offered me a promotion and I accepted, so things are a lot busier. It’s good in one way – I don’t have time to overthink and worry about worst case scenarios. I work as a risk analyst so it’s my natural way of thinking. That has helped me feel better psychologically. On the other hand, I don’t think I’m physically ready, my cognitive side isn’t ready yet, so I am struggling a bit. I know I have limited energy and I want to have energy for my family too, my kids, my partner. 

A brazilian woman with shaved hair with another woman also brazilian with her arm around her
Just after the transplant, Bianca shaved her hair off, with her partner's support

I’m very proud of what I have achieved so far, what I have been able to conquer, but the past two years has been really difficult for me and my family. 

My partner has been so supportive and so understanding. We don’t have family here, so she has been doing a lot and my partner and kids have been shielding to keep me safe. My son is the only kid who wears a mask in school at the time. So unfortunately, the whole situation has impacted them a lot. I feel guilty about it. They love me and they want to protect me, and that’s really restricting their lives. In Portuguese we have a saying that means a short blanket – if you cover your top, you can’t cover your legs. That’s my current situation. I can’t do anything to change it and I wish I could. This illness has impacted my life so much.  

As well as Anthony Nolan, the Aplastic Anaemia Trust has been helping me a lot since I have got my diagnosis. Their online communities make it easier to go through this horrible experience, since you are not alone and there are many successful stories, which gives you hope. Having the support from my loved ones is what really kept me moving forward. There were times that I was so overwhelmed that it was really hard to keep fighting, however the thought of seeing my children growing up was the strongest motivator of all. 

I also want to say that my treatment has been successful mainly because of the great care the Haematology team at the Nottingham City Hospital, led by Dr. Byrne, have been giving me. They have been so kind and supportive throughout this difficult journey and I would probably not be here today without their help. I will never be able to thank them enough. 

Reaching a year post-transplant feels like a cause for celebration.

I wasn’t sure if the transplant would be successful, I wasn’t even sure if I would make it out alive. That’s why I want to share my story, to celebrate. I’m a very private person and normally I wouldn’t be the type of person to share my story, but it’s important to me to raise awareness. Someone else raised awareness and that resulted in someone joining the stem cell register in Brazil and donating their stem cells to me. I want to give it back. 

We'll also be celebrating by going out for a special dinner, just a little thing with my partner and our children. But considering the long period we had to shield, it feels like a big celebration anyway.

A brazilian woman with short hair sat at a table with another woman also brazilian, both smiling
Bianca (left) and her partner, celebrating her partner's birthday

I wish my donor could know the difference they have made.

To anyone thinking of joining the register, I would say: it’s a simple procedure, you don’t lose anything, and you save someone’s life. I’m proof of that. Because of them I get to see my children growing up. I get really emotional about it. Without the transplant I probably wouldn’t be here. I still have so much to do, so much to give. And this person, he gave me this opportunity. If people realise how much it means, then it’s an easy choice to join the register. There’s nothing more important than giving someone a second chance of life.