My journey with breast cancer started about 13 years ago when I discovered a lump in my left breast.
I went to see my GP who, after an examination, told me that it was extremely unlikely to be cancer as, I was too young, breast cancer did not present with pain (which I had) and the lump was ‘mobile’. "If it moves it is not a tumour".
Mine was a tumour. We know our bodies best.
That is one thing I would tell anyone … if you feel there is something wrong your instinct is generally right… so persist!!!
I can remember my husband Kevin and I sitting our two boys down to tell them. Luke was about 8 and Jamie 13. We asked them did they have any questions and Luke put up his hand. He had 3.
1. Was I going to die? At that stage We didn’t know what type of breast cancer it was so we really didn’t know. I said, “I hope not”.
2. Could he catch it?
3. Where we still going to the 5 star hotel for our holidays?
It turned out to be the most aggressive type of Primary Breast Cancer (PBC) called triple negative
but due to my diligence it had been caught early (Stage 1) and I was given curative treatment. The cancer was not going to kill me but the treatment nearly did…. I was hospitalised on numerous occasions with life threatening issues but I knew if I came through that I would be fine and the cancer would be gone and I could get back to my old life…. Or so I thought at that time.
I requested a double mastectomy to reduce my risk of re occurrence and a gene test to establish any hereditary context. Both requests were dismissed by medical staff.
I can’t help thinking if my pleas had of been granted, it is highly likely, that I wouldn’t now be dying from breast cancer.
In 2019 my world fell apart again when I suffered an acute ischemic stroke. It was again only through early diagnosis and treatment that I was able to make a reasonable recovery.
A few months later my instinct was that ‘something’ else was wrong. Following some tests early signs of pre cancer (Stage 0) known as Ductal Carcinoma In Situ (DCIS ) were detected. I again requested a full mastectomy but only the infected breast was removed. I was told that policy was not to remove healthy tissue. No follow up treatment was deemed necessary and I was told that I had as much risk of developing breast cancer again as anyone else in the general population. This was completely untrue as someone that has had primary cancer has a 30% risk of reoccurrence as metastasised.
I again requested genetic testing to ascertain my future risk. This was again actively discouraged as I have no known family incidence of female cancer but I was adamant that I wanted the test. Eventually it was authorised and to everyones surprise it was confirmed that I was a carrier of the inherited altered BRCA 2 gene. As a result I was therefore now deemed to be of significant risk of developing further breast cancer. Only as a result of this positive test was I then referred to the Higher Risk Breast Unit at Antrim Area Hospital where I then received a scan which showed that breast cancer had been detected in my lymphatic system. A further scan also confirmed that it was also in my lungs and spine. (I could never understand why I had never been given follow up scans after the mastectomy.) The oncologist would not tell me how many tumours I had as I had so many. The cancer, now classified, as Stage 4 or metastasised (also know as Secondary Breast Cancer (SBC) and was now incurable and inoperable. My life expectancy was estimated to be 9 months - 2 years depending on response to treatment. That was 20 months ago.
I think one of the questions I am asked the most is when does your treatment finish. The answer is it doesn’t. It will continue for the rest of my life….I’m in hospital every 3 weeks. For the time being it is controlling the further spread. There will come a time however when it stops working and there will be no further options.
Throughout my journey I have experienced inequitable services because I live in NI and not mainland UK and also because I am a patient with SBC and not Primary BC...
1. Currently in NI it is not mandatory to collect statistics regarding SBC. The only statistic that is obligatory to record is when a patient with SBC dies.
Official statistics are required to shape services!!!!
2. As a patient with SBC I have no access to a nurse specialist. When I was diagnosed with primary cancer I had access to 4 nurses. A nurse was always present during appointments and when getting results.
Unbelievably, the team that had dealt with my previous PBC diagnosis and then my DCIS were not aware of my SBC status even though the relevant departments are located on the same hospital site!!!!
The day I was given the news I had SBC there was no nurse, no box of tissues, no support literature. My husband and I were told the news and advised to go home and tell our two sons. (It was my youngest son’s 18th birthday.) The consultant then left the room and we just sat and looked at each other. Following the SBC diagnosis I have had no NHS instigated contact with a breast nurse. There are currently no trust funded SBC nurses in NI. So at a time when you actually need it most there is no-one there.
The inequitable services available in NI and the inadequacies of the NI 10 Year Cancer Strategy with respect to metastasised cancer… led a few women and myself to present a manifesto at Stormont spear headed by photographer Jennifer Willis who presented our story through the powerful medium of photography.
I first met Jennifer was at the side of a rugby pitch. My son Luke, was and still is, an avid rugby player and he was well know too Jennifer. For Lukes 18th birthday I asked Jennifer to put together a medley of action shots of him playing.
This became very poignant as I received my SBC diagnosis on his 18th birthday…. the 26th Nov 2020…. I remember it like it was yesterday. I confided in Jennifer. I didn’t know how much time I had left so I asked her to take a family photo before my treatment commenced….It was a very emotional day.
Jennifer then asked me if she could take some raw photographs of me after my treatment had commenced. I said yes. I quite enjoyed the experience and I asked her if she would photograph my journey to its inevitable end. I wanted people to see that what is maybe portrayed on the outside is very different to want is going on inside. This developed into a pledge that Jennifer would find a way through the medium of photography to get my story and those of others in the same situation heard.
She kept her promise and I am very humbled and honoured to be the face of the exhibition but I know that I speak for all the women when I say that it was both emotionally and physically draining as photo shoots and interviews were intermingled with hospital appointments, treatment, scans and the ever present side effects. Whilst in the planning process I also had my fallopian tubes and ovaries removed to reduce my risk of developing ovarian cancer. One less thing to worry about!!!
The impact of Seen to be Heard, which uses art to advocate for change, has been powerful in giving an impetus to generating much needed conversations within the Health Care community.
I am delighted to inform you that as a direct result of The Seen to be Heard campaign that Cancer Focus have pledged to carry out an audit!!!
A video which depicts the personal experiences of all the women who took part in the exhibition is to be used in a training capacity by the Northern Trust.
I also currently participate on a Focus Group looking at how NI patients can access clinical trials.
I don’t know how long I will have the energy to commit to these causes or if I will live to see and benefit from effective change but my personal outlook for the foreseeable future is positive. My faith and a very supportive network of family and friends help promote this outlook.
I know that we, as a group of women with similar shared experiences, can make a difference and this is just the start.