The Power of a Journal By Elsa Jones
My name is Elsa Jones, I am in my mid 50s. I am from a little island in the Caribbean called Dominica, but presently I live in Gloucestershire. I’ve lived in Gloucestershire for over 20 years working in health and social care, fulfilling the role of carer, care coordinator, deputy manager and then manager in a care home, working with the elderly and individuals with learning disabilities and complex needs.
As the country started to re-open after the pandemic in 2021, I was vaccinated and sent for a routine mammogram and smear test. The smear test came back clear, and I was recalled for a second mammogram, which came back positive for breast cancer. After a biopsy CT scan, it was confirmed: invasive tubulolobular carcinoma, right breast, 67mm, grade 2.
After being diagnosed, my daughter and I were driving back from my appointment. Tears were rolling down my cheeks when she said to me, “I was going to wait, but I think you need some good news, I am pregnant.”
My first grandchild – I remembered my tears soon dried up. I had a new focus. So much to take on. My life is changing before my eyes. Once again, I am on the move, but in all directions: how can I start, where do I start, how is this going to end? A tumour and a baby.
I was prescribed Letrozole tablets immediately, one a day while we monitored the tumour. I remained on Letrozole for nine months while working full-time – how, I don’t know.
I struggled with the idea of losing my breast for nine months. I had another mammogram and biopsy. The original lump had shrunk, and I remember being asked if I was going to continue with the treatment, and I said that it was up to the consultant. When you are diagnosed with this dreaded illness, you have a lot of questions, but you fear elaborating on them, for fear of not wanting to know the answer.
I was waiting at a train station when I received the call for the results of my second mammogram and biopsy. I was informed that though the initial lump had shrunk, there were new areas of tissue concern outside the original lump. Fear came over me. I agreed then that I would have the mastectomy.
Skip to Christmas 2021 – I’m enjoying Christmas with my granddaughter in my arms, but grieving the loss of my mastectomy. I had lost something so important, yet with my grandchild, I had inherited something that I could only dream of.
In 2022, my cancer treatments were continuing – this time chemotherapy. At the time, with little knowledge of what to expect, I chose to get very little information from my doctors to avoid feeling overwhelmed.
The day of my first chemotherapy arrived and I spent most of my time during treatment on my own. I chose that because I was too exhausted for conversation, I needed time to think, sleep, rest and manage a slow recovery. I also needed to focus on what was going to be the next step after treatment.
It was during one of my mental explorations that I questioned myself about what I could do with all the knowledge and experience that I’d gained over thirty years of working in health and social care to help people with cancer.
Later that day, I was having a conversation with my sister in America, when she said to me, “Why don’t you write something surrounding your work?” This was when I decided to create the Health and Social Care Activity Journal.
The journal is a basic booklet that allows cancer patients to consider all areas of support and treatment: from their support network, to dietary considerations, any specialist conditions, mental health considerations and more, as well as detailing their appointments and check ups.
As someone that is still going through treatment, a journal like this continues to be of great help to me. I am able to take it to appointments and the professional that I’m seeing on that day can input all the details, ready for the next health care professional that I was seeing.
It also meant that I would not forget what was said, because all the information would be written down in the journal – who I saw, what was said, what medication was prescribed and when my next visit was.
I realised that though I was broken, something good could come out of this, something to support individuals like me and the public. The Health and Social Care Activity Journal was given life after months of writing and perfection, and finally published in March this year. For the first time, I am coming together with cancer sufferers like myself.
I hope the Health and Social Care Activity Journal can spark a movement for people to feel more in control and support patients to gain a better understanding of their diagnosis, options and the treatment process. I also hope that as a black person, I can encourage people of colour to get tested and recognise and deal with their diagnosis, treatment, and recovery.
Find out more about the Health and Social Care Activity Journal and get a copy here
