Judy is one of our Cancer Patient Partners. She volunteers with Healthwatch Essex to ensure that the voice of the people using cancer services in Mid and South Essex is heard and used to inform future changes in local services. Judy shares her cancer story and experiences below and why she is working with us to make a change for others.
It began in January 2017 when I decided to have a private medical assessment. It highlighted several problems, the most concerning being a high indicator for ovarian cancer. So, my GP referred me for tests and the results deemed by the consultant as asymptomatic – showing or producing no symptoms. My GP and I disagreed, and I was scheduled to have my ovaries removed in June. Two weeks before my surgery, I awoke with chest pains and ended up in hospital with a diagnosis of atrial fibrillation; rapid / irregular heartbeat. Thankfully, the tumours on my ovaries were benign.
When we returned from a short holiday later in the year, I noticed a lump in my breast so I went back to the GP and had an immediate referral to Basildon Breast Unit. I was seen within 2 weeks, had several assessments and was back in 2 weeks to see the consultant. Having had benign lumps, I’d got past the “Oh my God, I’ve got breast cancer and I’m going to die” initial reaction, but this time it was Stage 2 Breast Cancer. It was also decided that I would have a procedure called cardioversion to try to correct my hear disease. The first appointment was cancelled due to resources and the timing of my next appointment was complicated by blood thinners I was on. The procedure was unsuccessful. My breast surgery was finally scheduled for January 3rd, 2018.
I found I needed time to assimilate all of the episodes of bad news I had received before I was willing to share it with family members (other than my husband) and friends. This usually took me a couple of weeks, during which I had a few depressed days, a few days of researching, and then deciding on a course of action with the medical professionals involved, most of whom were very caring.
During that year, we had other strains on the family including caring for my husband’s mother who needed increasing levels of support and grieving the loss of my older son who died of a drug overdose aged 34, one week before my surgery.
Needless to say, I was depressed after the surgery, particularly as I felt disfigured by it. I found it hard to be thankful that the cancer had not spread, although this meant no chemo, just radiotherapy. My consultant and the Breast Unit nurses could not have been more supportive. The Radiotherapy team at Southend were also wonderful. Recovery was good and I found my best support, other than my husband, were friends who had previously been diagnosed with breast cancer, as they knew the emotional rollercoaster I was on. I turned down the opportunity to be referred to a support group as I felt that with my ‘good’ result, I wouldn’t be taken seriously – how could I sit there and moan to women who had been through a mastectomy or a double mastectomy and chemo? With hindsight, this was a mistake on my part.
Three weeks after my surgery, my mother-in-law moved to a nursing home, which eased some of the pressure on my husband.
Fast forward to June 2018 – My wellbeing meeting with my Clinical Nurse Specialist. She cut short the appointment and rescheduled it as she could see I was depressed. She made a referral for counselling and I have been so thankful for this.
I’d been to a Cancer Wellbeing Day in October 2018 and Cheryl at Healthwatch Essex gave a presentation on becoming a Patient Partner. I thought this was something I could do as there were just a few aspects of my care, including inpatient care, that I could help improve or possibly advise nearly-diagnosed breast cancer patients about. I soon found out that it is not necessarily about talking to newly-diagnosed patients, but about bringing the patient voice to professionals, and I have been pleasantly surprised about how receptive they are to this.
I now sit on several committees and bring the patients voice to the medical professionals. I’ve also attended a practice nurse training and a wellbeing day other than my own. The medical professionals often believe that the protocols in place are working, but that’s not always the case. I have often had to chase follow-ups, and with respect to communications with patients, I have reminded them that not all patients are medically ‘savvy’ and they should use plain language.
Being diagnosed and treated for cancer is a journey. I’d like to say that I am cured, and I’m very fortunate to have received a good prognosis, but there is a tiny part of me that still worries the original cancer or another one will come and get me.
For now, I just say I’m a survivor.