My name is Fiona and I was diagnosed with Breast Cancer in July 2018.
When I received my cancer diagnosis it was devastating, and my world suddenly changed in an instant. I went from living my “normal” life to “fighting” for my life in a matter of minutes. All of a sudden nothing else mattered apart from cancer, hospital, tests, what treatments I had to have, type of cancer, stage of cancer, how long would I have to undergo treatment for, side effects of treatment – the list goes on.
Loss of control
I found myself no longer in control of anything and feeling very lost and alone. When I told my friends and family there was shock and disbelief and they all said they would be there with me all the way. I had no idea at the time that what people say and what they actually do when someone they care about has cancer are completely different things.
I don’t believe they were avoiding me as such, but there was a lack of contact as I don’t think they knew what to say to me anymore. Those that did get in touch or check in every conversation became about my cancer not me. All everyone wanted to know about was my treatment, how long it would be for, what type of cancer did I have and so on.
I was no longer Fiona, I was “Fiona with Cancer”, and yes I had cancer but I was still me, and it was “my” cancer, but through a lack of understanding and awareness, people are scared. So everything became about cancer not me. People kept telling me stories of family/friends they knew who had cancer, didn’t survive cancer/did survive cancer/the treatments etc that person had.
I felt they were talking at me not to me and, to be honest, I did not want to hear about other people’s cancer stories. I had already experienced family and friends who succumbed to cancer so telling me stories really was not helpful.
However, I did have some amazing support – those that checked in on me, made me laugh, would let me talk about how I was feeling. The treatment was brutal and I was very unwell a lot of the time, but I got through it with those that cared about me, NOT my cancer. Coming from an Irish family it was extremely hard to talk to them about my cancer especially as it was “breast” cancer and it was advanced enough to need chemo, surgery, radiation and antibody treatment lasting at least 18 months if not more.
No feelings allowed
Both my parents had their own experiences of cancer and treatment, but there was never any discussion about it. Anxiety was felt by all the family, but no feelings allowed. So when it came to my diagnosis, I felt I had to protect my parents and family and play down its seriousness. I felt I couldn’t express how scared I was, not just about the treatment and side effects, but whether or not I would make it. I had an aunt who died from breast cancer so that made it even harder for me.
There seems to be a perception, especially in my parents’ generation, that cancer is about dying and not about surviving. They have lost many friends to the disease, however they both survived their cancer and so did I – through early diagnosis.
I can’t express how important it is if you feel something is not right DO NOT ignore it, make an appointment and talk to your GP.
Being a second generation proud Irish woman, I talked a lot about my cancer and treatment. As with everything you go through you can’t have any inhibitions or embarrassment, so I was very honest and open about everything. Talking about it really helped me.
The one amazing good thing about having cancer is that you meet so many others just like you, who are going through the exact same thing. All cancers and treatments are different, all outcomes are not the same, but the people you meet and bond with are the same as you. You can be yourself as they are experiencing the same thoughts and feelings.
Setting up Chatterbox
It is through meeting others in the chemo unit that a group called Chatterbox was formed. We are an informal get–together group of cancer patients for cancer patients. We talk, share experiences and information, have a whinge, a moan and a giggle together, make new friends and have a fun in a safe place.
Without the support of this group my world would have been so much harder. I have made fantastic friendships and together we want to help others find their place in their new cancer world and to let them know they are not alone.
As a group we decided to design two leaflets that we could offer newly diagnosed patients to help them navigate through their new cancer world. These leaflets have been positively received, particularly in the NHS Whittington Hospital Cancer Unit, and they will now be adding them to the packs that patients get on diagnosis. We are also talking with other NHS Cancer units so they can add them in their packs.
Please visit our website at Chatterbox for more information and stories. If you would like to download PDFs of our leaflets you can access the one on emotions HERE and one with practical tips HERE.
So, on this World Cancer Day I wanted to share my story with you, and hope that it will give you the courage to reach out and seek help if you feel something is not OK – the NHS will be there for you.