Excellent breast care nurses gave Sue the support she needed following her diagnosis
My journey started at the end of August 2019, the term journey being the perfect word for me. I was checking myself and I found a lump which became more prominent when I lifted my arm. I kept checking myself for the next two weeks, thinking it would go away. I’d had a mammogram less that eighteen months before and I didn’t have breast cancer in the family.
We were due to go away on the 11th September, a once in a lifetime trip to the Solheim cup in Scotland so I decided I would go the GP when we returned. But on the Sunday before we were due to go, I sat on the bed with my heart sinking. I told my husband and he took me straight to our local minor injuries unit.
The staff were great. They told me it felt like hardened tissue, but advised me to go to the GP the next morning. To my relief the GP thought the same, but still referred me as a precaution.
We went on our five-day trip with not a care in the world, but on the way home I received a call from the hospital who had booked me an appointment for the day after, 7th September.
My husband came with me to the appointment, not really knowing what to expect. The consultant examined me and booked me in for a mammogram and ultrasound the following week. The consultant didn’t know what it was at this point, but reality started to set in for me.
The next two weeks were probably the worst part of all this. On the 24th September I had my mammogram and ultrasound. The biopsy was not pleasant, but I still had a real giggle with the nurse which really helped me get through it.
I deal with facts and at this point I had none. The uncertainty made me ill.
On top of this, my next appointment was postponed by three days. I didn’t know this at the time but it was due to my results not being ready. This meant that I had to cancel a lunch with a friend I hadn’t seen for months and this just added to the feeling that I was not in control of my life. The way I got through it was realizing that although it was going to take up my life, I needed to take time for myself too. Added to this, in the run up to this appointment was our charity breast cancer day at my golf club. The stress of it all caused me to mix up my appointments. I thought I’d missed it but luckily the consultant was still able to see me.
The sample we took had Cancer in it.
My immediate reaction was ‘I lost my mum when she was fifty-six, I’m fifty-four’. I remembered an insurance man telling me in my twenties that you usually live as long as your mother. It was just so poignant for me.
I was diagnosed with low-grade DCIS which I was told was fully treatable. I needed a second biopsy to determine if it was invasive or not and I would have an operation and radiotherapy.
I spent some time with the nurse who gave me some booklets and reassured me that they were there for support. I was told that the two-night break I had booked for October shouldn’t be a problem for my treatment.
I read the booklets and found Breast cancer and you: coping with diagnosis, treatment and the future particularly useful.
Receiving the diagnosis did feel like a weight had been lifted. I called my friend, a recently retired nurse, who was shocked but said she would be there for me. We then went to see my 93-year-old aunt in law to tell her in person as she had just recently lost her husband.
She told me she’d had a mastectomy when she was fifty. Bizarrely, five minutes later, her niece knocked at the door and in response to me telling her about my diagnosis, she also revealed that she’d been through the same thing ten years ago.
We all spent the next three hours talking which really helped to reassure me. The following evening, we attended an event with around fifty people and I told everyone who would listen. I didn’t want there to be any taboo or anyone to feel uncomfortable.
My network of friends really supported me, the girls set up a WhatsApp group so I didn’t have to call everyone. It was very uplifting to receive upbeat messages and silly jokes.
I was prepared for the second biopsy, knowing that it would be painful for the next few days. The nurse was lovely, but when I realized she had taken five samples I felt certain the results would confirm that the cancer was invasive. Then the wait for results again.
Some parts of my journey were quite difficult, and I did feel that a few things added unnecessary stress. On returning from my trip I hadn’t been in the house an hour when the consultant’s secretary called to say she had my results and I had an appointment the following day. I paced the house worrying why I had an appointment the next day. Was it that serious?
My husband and I had a disagreement about this. All I wanted was a cuddle, but he is not that type of person. We came to the agreement that I would keep him in the loop but would go to the appointments with a friend who could support me in the way I needed. Some people struggle to cope, but you must do what works for you. In fact, a friend said he was probably struggling as he couldn’t face the thought of being without me.
After this upset, I had a call from the secretary telling me that my results were not actually ready. I was not best pleased; tensions were high, and I felt this was just not good enough.
Breast care nurses, a pillow and a new best friend
The appointment went ahead on the 25th October and it was confirmed that the cancer was invasive. I was told I would need a lumpectomy and sentinel node biopsy. Further treatment would be discussed after the biopsy results.
I was receiving such lovely messages of support from so many ladies who had been through the same thing. This helped me a lot, especially as one of the ladies I was speaking to was able to reassure me that my upcoming scan was not in an enclosed scanner, a massive relief for me as I am claustrophobic.
The next appointments saw me have a radioactive injection to help locate the sentinel node and a wire inserted to help to locate the lump. In between appointments, I was given a heart shaped cushion by the breast care nurses, which would prove to be my best friend throughout my recovery.
The operation was booked for the following day at a different hospital again. I arrived at the hospital at 7am, had my checks, donned my ‘sexy’ stockings and then waited. I was last on the list so didn’t go to theatre until 10.30 am.
The next thing I remember was someone asking me if I was in pain. I was, so I was given morphine, which I had a reaction to. I deteriorated, with my blood pressure falling and my temperature spiking so I had to stay in hospital overnight.
When I got home the next day I had so many visitors. The number of cards and gifts were overwhelming. Eight days later, I was starting to feel human again, so I started doing the exercises I had been prescribed. The wound under my arm proved difficult to heal and I found myself avoiding anything that would remotely risk infection.
By the time of my post-op appointment, my surgeon had left the hospital and had been appointed as a locum. We had built a rapport and now I had to form a relationship with someone new.
It was now the 15th November and I had a gut feeling that things were not over just yet and I was right. Although the cancer had not spread to my lymph nodes, the surgeon had not managed to get clear margins, so I had to have a re-excision.
My second lumpectomy operation was booked for the 26th November. This time, I was able to go home the same day to more visitors and more cards. The first day I was in a lot of pain but this quickly eased and from then on was easily managed by paracetamol.
On Friday the 13th I received a letter from the hospital and then a phone call to inform me that my second consultant had gone off sick, so my appointment on the 17th December would be with yet another consultant.
I struggled with this appointment. I didn’t know this consultant; he was stressed and under pressure and I didn’t feel like I was being listened to. He informed me that the second lumpectomy did not achieve clear margins either and that I should have had a mastectomy. In fact, he strongly recommended a mastectomy and reconstruction using an implant. I felt he was pushing me towards having an implant as he was a plastic surgeon and he thought that was best for me.
The following day I had a long chat with breast care nurses I trusted. She said it was ultimately my decision and arranged for me to see the consultant for 45 minutes after surgery. He was mortified that I was so upset, and he explained in more detail why he had recommended an implant. But I did not want one. He said that even if I did not have one in the same operation, I could still have a reconstruction at a later date. This put me at ease and after this we forged a great relationship and he looked after me really well.
I decided on a mastectomy without reconstruction and the operation was booked for the 6th January 2020. A few days before the operation I sat my husband down and asked him if he knew what I would look like after the operation. It was important to me that he was happy with the type of operation I had chosen.
My mastectomy was successful, and I am so pleased with how neat my scar is. My husband and my friends all commented on how positive I had been throughout my treatment, but the breast care nurses warned me that the realization can kick in later.
I did wonder how I would cope after getting used to having lots of support and this disappearing when treatment had finished. I cried watching an episode of Cold Feet in which Jen looked in the mirror at the same point in her journey.
A roller coaster of a ride but what doesn’t beat you makes you stronger.
The only thing left to do was to get fitted for my prosthesis. Having put on weight over the last six months, I was measured with a C cup. I had always been a B cup, so we settled for the smaller size. I am so glad I did as now my bra goes on in the morning and I don’t look any different to anyone else.
Having had a mastectomy and no inclination to have a reconstruction, I had a draw full of bras that I couldn’t wear. I searched for somewhere I could put them to good use, and I found Against Breast Cancer.
It was important for me to raise awareness of breast cancer and get more women to check themselves. The bra recycling scheme was perfect for that. What I wasn’t expecting was how much fun it was going to be!
The recycling team told me that I needed to collect a minimum of four hundred and fifty bras to get a free collection. That wasn’t going to be too difficult! I asked how many bras made up a ton, and I was told there were roughly 9000. I set a target of half a ton.
I have decorated my collection boxes and made posters telling people of my story and how they can help by collecting bras. I sent an email to all our golf club members asking them if they would like to collect bras from family and friends. I received a great response.
I had set myself a time limit of roughly 6 months but then the lockdown restrictions put collections on hold. Before lockdown, I had reached nearly 1,000 bras and will keep going.
Here’s to having more fun talking and creating awareness.
Patient Information Leaflet
What should you expect when you find a lump or change in your breast? What may happen during your first referral?
We have developed a new patient information leaflet that answers any questions you might have if you suspect you have breast cancer.Download your copy