Tanya, 42, breast cancer
How did you find out you had cancer?
I woke up one morning and felt pain and heaviness in one breast, similar to pre-menstrual discomfort. I instinctively felt and was concerned to find a thickened area. I did a quick mental check and knew it was the wrong time of the month to experience the pain. I had heard that the glands in the breast can sometimes become swollen so decided to watch what happened over the week, in case it resolved. The pain did not go and the thickening did not alter so I went to the GP who ordered the routine tests at the local breast care unit. I started off the day with an attempted needle biopsy but the lump was solid. I went from there to have a mammogram closely followed by an ultrasound scan and further biopsies, all in the same day. I was diagnosed with invasive breast cancer in August 2008, when I was 42.
What did you think/feel when you were diagnosed?
My diagnosis came as a complete bolt from the blue. I was completing a Montessori Directress teaching certificate whilst having a career break for the children. My daughter was just starting school and my son would be at nursery so I was planning to return to work. I didn't have time for a health blip! From the start, I was aware that there was likely to be a problem because of the information given in response to my questions on the day of screening. I had worked in oncology previously. There was no history of breast cancer in the family and I could not really believe that it could happen to me but prepared myself for the worst, just in case. I knew that early diagnosis was favourable so was philosophical that the problem could be dealt with. I think that I accepted this had happened and I would have to deal with it (but it was four years ago now so the memories fade). I remember telling friends ‘the news’ and one asked me why I was laughing as I relayed what was happening. Perhaps if I laughed and kept it ‘light’ then others would take it in the same way?
How did the people around you react?
Everyone seemed very shocked. Friends were disbelieving that there might be a problem until the official diagnosis. The predominant message was that ‘everything will be fine’. After diagnosis my family and friends were tremendous support, emotionally and practically. Offering childcare and some support with cooking was a true lifeline when I was having treatment. Most acquaintances appeared to feel that they needed to be serious around me and to talk in hushed tones. It was a relief for me and everybody around me when I started to get back to ‘normal’ and life could just carry on and others started acting normally around me. I found a lifeline in meeting other young people who had experienced cancer treatment too and who helped me to rebuild my confidence and build friendships. My friends and family were supportive of me getting involved in the SHINE cancer support network. With them the whole family have engaged in fun activities and have taken part in fund raising events to give something back to those who helped me/us through treatment.
What type of treatment did you have? I had a bilateral mastectomy. This was closely followed by 6 doses of chemotherapy. That was followed up with radiotherapy to my chest wall and neck and finally I went on to daily tablets that I continue to take. I also had a period of time of having monthly hormone injections for the first year, alongside my tablets. As a result of total lymph node clearance on the affected side I have been left with some lymphoedema that requires ongoing treatment with exercise, taping and support sleeves.
How did you feel through treatment? I felt angry and frustrated that I felt unwell and had to give in and go to bed some days. I tried to be independent and in control as soon and as much as possible! I did have some complications due to neutropenia, including developing shingles that resulted in some hospital stays and additional treatment. That was tedious and frustrating. It was a relief to finish the chemotherapy from which point I continued to feel better. The worst feelings of all were the frustrations associated with memory loss and an inability to remember words and string a coherent sentence together (known as chemo brain).
What happened after treatment finished? After treatment finished I concentrated on getting a new job (which was not easy with chemo brain)! I really stuffed up an interview because I couldn't remember the words that I needed to use. Luckily the interviewer was really supportive and encouraged me to reapply for the job if I was serious. I was serious and proved it when I secured another interview and the job. It was really tough at first as I lost all my confidence during treatment and this was compounded by chemo brain. Doing a tutorial session to a new group of students, for a new employer was a sure fire way of exacerbating those hot flushes!! Getting into work was really helpful as I had a checklist of priorities and deadlines that gave structure and helped to retrain my brain! I also strove to get myself some volunteering at the children’s school and this too was really important in my recovery. The belief that the staff showed in me, the gratitude for my help and the value placed on it really helped me to grow my confidence back. I think that I felt more grateful to the school for the opportunity than they could have for the assistance and support provided. Over time, as my hair grew back people started acting normally around me and life went on.
How did you get involved with Shine? I was discussing support with my breast care nurse whilst receiving chemotherapy and she alerted me to a new group, just being set up, specifically for younger people with cancer. I plucked up the courage to go to a social event and that was the start of developing friendships. I wasn't that social at that event having lost my voice for weeks during treatment but it encouraged me to go to another event. I went along to the beach walks and enjoyed the combination of great company and exercise over the summer. Being able to attend family events has been great for us all in terms of feeling supported, broadening our social network and just having fun.
How do you feel now about your experiences? Having the cancer and its treatment will always be part of my identity. Except for the lingering lymphoedema it has faded into the distance now and this year sees the major ‘5 year’ anniversary. Being involved with SHINE enables me to share support with others, simply by being someone in the group and being welcoming and ready to listen to things whether cancer related or not. I have some fantastic friendships as a result of my experiences and a result of SHINE being there for me.