How did you find out your brother had leuakemia?
On what should have been a regular Saturdaty night; a meal and a film with Jonjo and his girlfriend, Jonjo felt he was too ill to come. He had been to watch his beloved Aston Villa play that day and had been struggling with shortness of breath for a couple of weeks. I remember asking Jonjo to go to the hospital and just ask them to check him over and do a blood test to check there wasn't something underlying, not thinking for a moment it would be anything worse than a bad virus. He agreed in the end and I went with him to our local A&E department. They asked him the usual questions and he went through to triage and then came back to wait. Jonjo was taken through to see the doctor and they took two samples of blood. At this point he was feeling ok, anxious to get home as you would expect. I remember the nurses and a doctor at the nurses' station looking over at us while they were talking but I was convinced it was because we were being too loud. The doctor that delivered the blow did not speak very good English and spoke very quietly to Jonjo. I remember the words vividly. He put a hand on his shoulder and said "We have the results of your blood tests. You have a blood disorder." I remember Jonjo saying "ok" as a response to everything he was told but knowing from his face that he could not, understandably, take it all in.
Do you remember how it felt to be hit by such awful news?
I remember feeling like I was going to pass out; my Mom had had to leave the room, she could not deal with what she was being told and I felt a sudden wave of heat rise up in me and I had to take my coat off and sit down on the floor. It felt unreal but the severity of what we had been told dawned on me very quickly.
Were you aware of what leukaemia was?
I knew about Leukaemia, I have a friend whose family had recently been through a similar experience and I had learnt bits from him. I did a lot of research after we found out about Jonjo though, ignoring the advice of most medical professionals and looked on the internet.
What was it like visiting your brother during his treatment?
It's funny because we had some great times in that hospital. We had some moments that I will treasure forever. It wasn't all doom and gloom and misery. There was laughing, there was of course, crying, but there were good times. I looked forward to visiting Jonjo and we made sure as a family that there was always someone going to visit Jonjo. Whatever else was going on in our lives, I was aware that for Jonjo, those few hours a day were what he was most excited about. This was so important to us and I don't think there were many days that Jonjo didn't get a visit from one of us.
What was it like visiting your brother during his bone marrow transplant?
When Jonjo was in the QE undergoing his transplant we were not allowed to visit en masse like we did before due to the risk of infection and we did not want to affect the chances of success with his treament. For this reason our Mum was the only one allowed to visit. We spoke to him on the phone when he felt up to it but there were days when he wasn't up to talking to anyone and those days were tough. It was awful to receive texts from Jonjo at his lowest point when he could not talk and he felt so poorly and to know that we couldn't even go and visit. Those days were the worst.
Did you keep a record of any information, help guides, leaflets etc?
There were masses of leaflets available at the time of Jonjo's illness but I didn't keep any of these. They didn't seem to represent Jonjo in my opinion. They were about children or older people with the disease and my brother was a young, spirited 23 year old with a huge future ahead. There was one thing I kept that I still have to this day. It was a book called Jack's Diary written with the parents of a little boy who had battled ALL himself. It was a way of him explainign to his friends and his younger sister all about the things he was feeling and what treatment he was receiving, spoken in a child-friendly way.
If so, did you feel it necessary to understand as much as you could about the disease?
As I mentioned previously I nodded in agreement with the nurses who said it's best not to look on the internet until we know more, completely planning to go home and fire up the laptop! Which I did! And bitterly regretted. There seemed to be statistics attached to everything and through my own fear I only heard the negative. It wasn't long before I stopped reading and started asking the nurses and consultants at the hospital about Jonjo rather than "sufferers of Leukaemia" or "people with ALL." There will always be people outside the norm, people who defy the odds and amaze the professionals. Jonjo was this person.
How did other members of your family deal with the illness?
Our Mom and Dad dealt with Jonjo's illness in different ways. Mom closed herself off from meetings with consultants and chose not to go. Instead, my older brother and Dad and I would go and ask questions and relay the information back to her. I tried on many occasions to get her to come, telling her its best to hear it herself and ask any questions she may have but she didn't want to and that is how Mom coped. Her strength amazes us all to this day. Dad, on the other hand would arrive at meetings with a notebook and pen and highlighted parts of the letters we received with question marks and scribbles all over and would ask many times for things to be explained again if he did not fully understand. There was never a time when we felt rushed or fobbed off or unable to ask any doctor or nurse or Jonjo's consultants a question. They never sugar coated anything, we were always granted the truth. My brother and I both asked questions when we needed to and did our best to support each other and our parents thorugh it.
Was a strain put on the family because of this? or did it help bring you together more?
We are a very close family anyway but I would say the experience we all shared brought us closer together. We don't ever take anything for granted and the support we were able to offer each other strengthened our bond. We are a Rooney unit and anyone who knows us would probably testify, that is a force to be reckoned with!
Throughout your brother’s initial treatment, did this have any adverse affect on your own personal life, studies, work etc?
I am a Primary school teacher and the beauty of what I do is that children (my class were 7 and 8 years old) are full of their own self-importance and their own lives are all they know and think about. This meant that between the hours of 8 and 5 most days, I didn't have to think about illness or treatment. There were obviously times that I did and couldn't think about anything else but the children were my strength as they were my focus and my distraction. I remember going back to work the following day and people telling me to go home and I didn't need to be there. But I wanted to be, its what I do best and I have to say, I'm not sure if the same would be said If i did a different job, it definitely helped me. I would go after school to visit Jonjo, at times taking my marking with me and doing it while he had dinner or another round of observations. I told the children the very first day that my brother was poorly and there may be times when I couldn't be in school (because I had to go for tests etc to see if my bone marrow was compatible) but that if I was ever not in for any reason, not to worry. I was fine. They took that on board and then we moved on. I had a tremendous amount of love and support from the entire community of my school; the children, parents, parish and of course the staff.
Did you feel the need to put on an act of bravery/happiness in front of your mom or anyone else?
Never! I imagined at the start that at school I may have to do this at times but as I said, I was surprised by how school was an escape for me. We never had to act brave in front of our parents or my brother and his family. There were times when I felt I had to be brave for Jonjo when he struggled the most. I felt it would have been selfish of me to be upset in front of him with everything he was facing, but that stems from my feelings, not from his or anyone else's. As I mentioned before, there were times in the hospital when we were genuinely happy; little milestones accomplished, small barriers knocked down.
Has this experience changed your life atall? If so, how?
This experience is one of the biggest, life-changing moments for me and for my family. There are times when I feel like it was a all a dream, that it can't have happened to Jonjo, can't have been our family going through it; times when it seems it was a lifetime ago. Then there are other times when I cannot remember a time before Leukaemia was in our lives, a time before hospital visits and blood counts came up in many converstations.
Is there any advice you would give to someone who is the sibling of a person who may have just been diagnosed with leukaemia?
Talk! Ask questions, cry, scream, shout that it's unfair but talk. This helped me personally, more than anything. Talking to doctors, nurses, consultants is one thing but try to talk to the families of those in hospital with your brother/sister/loved one. They know, they understand, they don't offer sympathy, they offer empathy and this is so powerful. You inevitably feel all alone in the world when you receive the diagnosis; talking shows you you are not and there isn't a question in the world they won't have considered.
Any other comments?
Almost 6 and a half years ago our world was turned upside down by Leukaemia. I cannot tell you how proud I am, and all my family are, with how far Jonjo has come. He is still the same fun loving, crazy, hilarious person he was before but something else is there now. He has this amazing zest for doing everything he can to help spread the word about Leukaemia and has this incredible ability to touch the lives of everyone he meets. Through B Positive he is trying to reach out to families and friends of those who have been through a similar experience as him and it is so admirable. I know he is my brother and so I am biased, but I am so proud of what he is achieving here. Spread the word; BPositive!
If you know someone who has been affected by leukaemia or indeed any blood cancer who would like to share their story then please contact us
When a patient is diagnosed with leukaemia all the focus is naturally drawn towards that person. However it is not only the patient that has to take on a diagnosis, as families and close friends are very often affected too. Close friends or family members can often play the role of an 'unsung hero' during a patient's treatment - and here we spoke to Anna-Marie who explains what it is like watching your sibling battle blood cancer.
Bpositive Support & Information blog
A mixture of insightful comments, posts and general 'blogging' from various Bpositive contributors