Paul’s story
Jill and I grew up a few doors away from each other, we even went to the same secondary school. But it wasn’t until we got off at the same bus stop one evening that we started to get to know each other. I would walk Jill to the end of her drive where we would talk and talk until her mum would shout, ‘Come on in Jill!’. This went on for about a year until I asked Jill to come running with me one Sunday morning. Five years later, we married. We enjoyed walking together, with the Lake District becoming our favourite destination.
Jill was fifty-three years old when in June 2013 she discovered a lump in her left breast. Jill managed to see the doctor within a week who referred her for further tests. We went away for a week’s holiday and upon our return, Jill had an appointment waiting.
Upon examination, the lump was quite large, and the consultant was surprised that Jill had not found it sooner. Jill had a mammogram when she was fifty and no lumps were detected, so she had not examined herself on a regular basis. I know she felt some guilt about this.
The breast cancer had spread into the lymph nodes under her left arm and she was diagnosed with an aggressive HER2+ stage 3 breast cancer.
Jill had a unilateral mastectomy followed by chemotherapy. Within the first year of diagnosis it had progressed to stage 4 when small specks of cancer were found in her thoracic chest cavity. She was prescribed Trastuzumab (Herceptin) which cleared these specks. This was good news, but we knew from then on it was about controlling the cancer for as long as possible.
After a year taking Herceptin, Jill’s consultant recommended that she stop due to the potential heart damage it can cause. This sparked discussions between us, and the consultation team and an investigative echocardiogram was carried out which showed that her heart was in good condition, so it was agreed that Jill would stay on Herceptin.
Whilst lying in bed one morning approximately two years after her diagnosis, Jill had a seizure. I phoned for an ambulance and Jill came around as they arrived, not remembering what had happened to her. She decided not to go in to hospital though, because she felt okay despite what had happened. The paramedics agreed that Jill could stay at home but if she had another seizure that day she would have to be admitted.
As the ambulance left, Jill logged onto the computer and started writing her eulogy, saying ‘I want things done how I want at my funeral’. Jill was quality inside and out.
An MRI scan confirmed that the breast cancer had spread to Jill’s brain. In fact, she had at least 15 tumours there. The Herceptin had kept the breast cancer out of Jill’s chest cavity but couldn’t stop it from crossing the blood-brain barrier at the back of her head.
Jill had one dose of radiotherapy on her brain which reduced the size of the tumours, yet they continued to grow. She was put on Trastuzumab emtansine (Kadcyla) which she was more than happy to try as by this point, she was running out of treatment options.
Kadcyla didn’t reduce the size of the tumours but it did keep the rest of her body clear. Jill’s consultant arranged for her to have Gamma Knife Treatment, a radiosurgery utilising computer technology to accurately target the brain tumours.
Before the treatment could begin, a stereotactic frame was made and pinned to her head to prevent any movement. This meant the gamma rays could hit the tumours precisely. Jill laid still for four hours solid. The treatment was successful but shortly after, the tumours started to grow again.
Jill had more treatment but this time it didn’t reduce the size of the most dangerous tumours in her brain. These caused three seizures in total and the last one in September 2017 saw her hospitalised for a week. The initial anti-seizure medication, Carbamazine (Tegretol), prescribed made Jill feel ill and lifeless, she was then prescribed Levetiracetam (Keppra) which thankfully didn’t produce any debilitating side effects.
Her speech started to deteriorate and by Christmas 2017 she was nonverbal. This made it very difficult for Jill to express herself and for me to understand how she was feeling. The brain tumours affected her ability to write and use the computer, so this further hindered our communication.
Jill’s mobility was also deteriorating, and she became increasingly confused too.
It came to the point that it was not safe for Jill to be left on her own, so I stopped work to look after her.
By mid-January 2018 Jill was unable to stand. The doctor visited us at home and Jill was taken into hospital. Jill stayed in for a total of twelve days and eight of these days consisted of palliative care. I never left her side and stayed with her during her last moments. She passed away at 12:15 am on February 1st 2018, a month short of her 57th birthday.
Apart from Jill’s mum, Doreen, and her cousin, Sue, there is no other history of breast cancer in the family. Doreen was diagnosed when she was eighty-five but was treated and is still well at ninety-six. Sue is in her sixties and was diagnosed with stage 2 breast cancer, but she has also been given the all clear.
Jill was given the best drugs available for her type of cancer. She disliked losing her hair and her breast but she went along with it hoping it would give her more time. I hope we see more humane ways of treating breast cancer in the future, where surgically removing breasts and pumping side-effect ridden toxins into patient’s bodies is a thing of the past.