2nd journey
My first journey with breast cancer began in February 2023, when I went for a routine mammogram in a mobile van in a car park in Potters Bar. Little did I know then how much my life would change in the next year and a half.
I was feeling healthy and fit at the time, having just turned 60 and keeping up with my running schedule four times a week. I weighed about 9st and was 5ft 6in tall. I drank moderately and ate a balanced diet for most of my adult life. I had no reason to worry about my breast health.
So when I received a letter saying that they wanted me to come back for another scan, I thought it was a technical glitch. I even phoned them to ask if there was a problem with the equipment. I went along with the appointment, not feeling anxious at all. We even stopped at Ikea on the way for some meatballs.
At the clinic, they did an ultrasound and told me they had found a small area of concern that looked like cancer. I was shocked, but not scared. The woman who did the biopsy said it was so tiny that they were testing a new procedure to remove it under local anaesthetic, and asked me if I wanted to take part in the trial. I agreed, thinking it would be a quick and easy solution.
But then, in March, I met the breast surgery team, who gave me a different story. They said the biopsy showed that I had grade 3 cancer, which meant it was fast-growing and aggressive. It was also estrogen positive, which meant it was fuelled by hormones. They said I needed surgery and possibly radiotherapy, but they couldnāt do it on the NHS until May at the earliest, and they werenāt sure about the date. Thatās when I started to panic. We decided to pay for the operation privately, which cost us Ā£13,500.
At the private clinic, they did the surgery and told me subsequently they had got rid of all the cancer, and it hadnāt spread to my lymph nodes. My husband and I cried with relief. But in May, we met the oncologist, who said I still needed chemo, radiotherapy and hormone pills for 10 years. She said it was because of the type of cancer I had, and that the treatment should start in two weeks. She told me to go to the dentist, have a heart check, get a covid booster and buy a wig. I did everything she said, and started the chemo.
The first four rounds of Doxorubicin were awful. I threw up all the time, even when I tried to walk to flush out the chemo. I lost my hair and felt every side effect. I kept a record of how I felt each week, hoping it would get better. The oncologist said the next stage, Plaxitaxel, would be easier for most women. But not for me. After the first round, I lost the feeling in my feet and hands. It was like wearing a space suit. They lowered the dose and gave me weekly treatments instead, which made the last six rounds more bearable.
During my entire treatment, I cried only twice because of the terrible NHS administration. I was mistakenly left out of the chemotherapy day list three times. Without a PICC line, my veins were severely damaged after 11 sessions. No one suggested a PICC line, and I didnāt know the effects of chemo. I also remained neutropenic for extended periods, and despite my oncologistās wish for accelerated treatment, it did not align with my bodyās reaction. My neutrophil levels dropped to 0.22, leading to two blood transfusions due to my poor recovery.
My hospital experience in North London could be likened to a visit to a garage, and I emerged at the end of October feeling immensely relieved to have endured the entire challenging five months. In November, my radiotherapy commenced, involving five sessions plus an additional four booster sessions. These were promptly conducted at 8 am, complete with the bonus of complimentary parking. Other than an unexpected interruption by a cleaner, the process was uneventful.
By the 19th of November, my treatment was concluded, and I began taking Anastrozole at home, humorously remarking to my husband about a 10-year reunion. Remarkably, the Anastrozole came without side effects, and I havenāt noticed any change in my physical condition.
Finally completing treatment was an incredible relief. At the final meeting with the Oncology team, they introduced the Royal Free Stratification clinic and provided a leaflet promising future contact. However, the subsequent appointment was cancelled due to the Nurseās departure, and no rebooking occurred at that time.
By Christmas my eyebrows had grown back and I began to start having a small social life. My hair took much longer, and even today, my fringe has not grown back.
All went well, I was tired but expecting this. We went on holiday at Christmas, came back in January and life started again. I began slowly to exercise and go into work to meet colleagues. February was also okay and I was delighted to have my annual breast mammogram and be signed off by the Consultant who said we will book you in for the 15th February 2025.
Then in March I started to feel very tired, this continued in April. I then had a weird small couple of lumps emerge, like horse fly bites. I thought it was because I had gone out and purchased new bras. There was a small rash and then a bit more of an area which was red. I attributed all of this to the radiotherapy and put cream everywhere. A number of the areas went within a week and there was just one area that did not go away. By May, my husband and I agreed that we would go on holiday and if it was still there when we got back we would go and get some advice. By this time, I had started to feel very unwell.
My second journey then started on the 2nd June I called the Stratification line and an appointment was made for the 14th June. I still just thought that it was a weird response to radiotherapy. The Nurse took me through to the ultra sound team. Five biopsies were taken and I went home still unconcerned. Then two weeks later I got a call to ask if I could come in to talk through the results. The news that I had cancer again and it had come back after only 12 weeks was utterly devastating. The sheer white terror of fear meant I could not actually go in the room to hear the news. I stood outside of the Doctorās door and spoke through the entrance.
The Consultant kindly called us on the next working day and the next piece of news was more sh*te. I had somehow got two new cancers in the same breast. The largest was a neuroendocrine and the second was a triple A negative. So in short, I had gone from the most common to the rarest in the World and then the one that 15% of women have. Three breast cancers in the same breast ā I did not even know this was possible.
The next weeks were truly horrible. Given how rare one of the cancers are and how aggressive, two MDTs were consulted and none of them had ever seen this before. The decision was finally made that the Breast Cancer MDT should lead as more drugs were available to treat the cancer. Meanwhile the cancer carried on growing and became extremely painful. The decision was made to support a mastectomy. However, once again, the NHS waiting list meant the timescale to get the surgery done was too long and we paid to have the treatment privately. A cheaper hospital so this time only Ā£11,800.
Three weeks ago this was carried out. Besides the skin graft pain, it has gone smoothly. The area is very tight, but I will work on this over the next weeks and months. The histology was good news and once again the margins good at 5mm and incredibly it had not travelled to the lymph nodes. The tumour itself weighed 1lb and was a fungating breast cancer that grew on the outside of my breast.
This week we met the Surgeon to hear the next stages of treatment and I was stunned to hear that there are none. This decision, I understand is made on the basis of āno harmā. I had all of the treatment last year and to give me more now would be harmful. I cannot have more radiotherapy as this would be dangerous. I do not have cancer now and how they want to manage moving forward is through six monthly CT pet scans and for me and my husband to be vigilant with our surveillance of my body.
So where does this leave me. I have found it hard to have a group of faceless MDTs make decisions without explaining them to me. This might happen in the next weeks, but I would have liked to have their thinking discussed.
The NHS administration is appalling. Being sent 8 appointment dates which constantly change is ridiculous and being left off a chemo list as the list is on paper is pathetic and frankly in my view an omission of care.
There have been three people who have stood out for me within the NHS and I am very grateful for their dedication to their work. In addition the wig shop in Ware and Breast Cancer Now.
Today and possibly forward I will be scared and do not believe a day is not going to go by when I trust life again. People say this will change, but I relaxed once before and will never do it again. Talking to your husband about your death and hearing from your sister that your daughter had text her to ask when she thought I might be well again has been heart breaking and left me very sad.
I hesitated before writing this down as I desperately do not want to frighten anyone else. However, perhaps, maybe, if this happens to another women, they at least will know they are not alone.
