From Oncology Nursing to Coping with Breast Cancer

My Journey There and Back

Kate Hayward, Anthony Rudd

• Publisher: Routledge
• Year: 2021
• eBook ISBN:
  9781315346809
• Topic: Medicine
• Subtopic: Social Science Biographies

Many healthcare professionals that I've encountered refer to a patient's cancer journey; indeed I had an article published describing a patient's journey through biological therapy. This particular case history described my involvement with a medical doctor's experience of renal cell carcinoma and self-administration of immunotherapy. He was very keen to share his experience to educate and inform other health professionals and I now find myself in a similar situation.'I have 'journeyed' from nurse to patient when diagnosed with grade 3-breast cancer. Of course, I've experienced various health problems before this time, but I never spent a night in hospital, unlike members of my family who have experienced serious illness and hospitalisation on several occasions. Consequently I've always regarded myself in the caring role amongst family members and over the years I've used my nursing knowledge and skills to help them deal with both the physical and psychological issues of their various disease processes. However, being diagnosed with breast cancer has now changed me from nurse and carer into a vulnerable ill person with doubts and fears for my future. To restore some sense of purpose while on sick leave and help me to get through each treatment stage, I decided to keep a daily journal of my experience.

March 2006–May 2007

My breast cancer journal

CONFIRMATION OF MALIGNANCY

1 MARCH 2006

Belinda was brilliant and organised a mammogram and ultrasound for later that day. It was very difficult trying to maintain normality in the office I share with nursing friends and they were aware that ‘something was going on’, as I was quite subdued. I guessed the news wasn’t good when the mammogram and ultrasound took a while to perform and just by observing the radiographer’s expression, but I wasn’t prepared for the news that I also had a problem with calcification in the right breast, which would also need a biopsy. So I walked back to the office with the knowledge that the left breast lump was very likely malignant and the right side would also need investigation. As soon as I saw my friends I burst into tears and explained what I knew. Gill’s the Lymphoma Clinical Nurse Specialist but her previous post had been in breast care and Catherine was leader of the IV team so I was in very good hands for advice and support. They decided the best course of action was to come home with me and open some wine! This was how Phil found us later that evening as he returned home slightly earlier than usual, before Gill and Catherine had left. He looked a bit annoyed with us and was obviously puzzled why we were at home drinking wine. So my carefully planned explanation was blurted out when they left us alone.

I explained about having the mammogram and ultrasound. Poor Phil nearly fainted. I told him to be prepared for the worst out come of disease in both breasts and that I’d know more after seeing the surgeon the next day. I felt so guilty for causing him such distress and he said how unfair he felt life was, as he thought we’d had our share of bad luck with his own health problems and the failed in vitro fertilisation (IVF) treatment at the start of our marriage.

2 MARCH 2006

I went to the Breast Unit and met one of the surgeons, Phil Turton, who was 99% certain of breast cancer after examining me. The lump I could feel was malignant but he also told me of other suspicious areas that I was unaware of. I wasn’t shocked by the diagnosis as I was expecting it, but I did swear as I felt I had to make some response. To be honest it was almost a relief as I’d had a ‘bad’ feeling for some months that I was going to have to deal with bad news and I was glad it was me and not Phil or anyone else in my family. Also I had the incidence statistics buzzing through my mind and couldn’t help thinking that I’d joined one of the 40,000 plus other women diagnosed each year. In 2003 there were 44,100 new cases diagnosed in the UK.⁹

It felt weird having to strip off while I was officially at work, so I tried to visualise being on the beach sunbathing topless! I was really glad to have Gill with me for a second pair of ears as I had agreed with Phil that he’d go to work and wait for me to ring him. Phil Turton did cards for bloods, a CT scan, an MRI scan, breast biopsies and a bone scan. He talked about me having two cycles of FEC chemotherapy (5-fluorouracil, epirubicin and cyclophosphamide), and then a repeat MRI. He would then do a mastectomy if the tumour had shrunk enough. He needs to wait for the biopsy result from the right breast before any treatment decision but I might need bilateral mastectomies. We discussed possible immediate reconstruction, which he would like to offer me in view of my young age. I immediately felt confident in his care and the reconstruction option made me feel a whole lot better and more optimistic about my future. I felt he wouldn’t offer me this op if I wasn’t going to stay alive to benefit from it. We also discussed a change of chemotherapy to Taxotere^® if no response to FEC. I will also need radiotherapy and apart from the radiotherapy at Cookridge Hospital, I asked about having the chemotherapy and surgery through the local private hospital as I have private medical insurance. I’m so glad this is possible as it would be really difficult for me to cope with having treatment in my own workplace. Walked over to outpatients with Gill to have the blood tests done and then went back to our office to ring my Phil. I decided to leave work early as I felt like my head would explode with all the information. Phil came home to me. We decided I should let my family know so I rang my brother Steve and asked him to tell my parents, as I couldn’t face talking to them over the phone or driving over to see them. I feel very close to Phil and can’t bear the thought of us not being together if I’ve left things too late.

3 MARCH 2006

I’m so glad it’s my day off, couldn’t have worked today, there’s so much to think about. We hardly slept last night, so got up early and went swimming and out for breakfast. Sat outside the café to eat and it feels good to be alive with the sun on my face. Made me feel a bit angry too as without being too dramatic, I’ve always been appreciative of life and the beauty of nature unlike a lot of people who say they appreciate it only when they become ill.

As a way of dealing with the waiting we both got practical to occupy ourselves. I booked a hair appointment for a short cut and highlights, which I’ve never been brave enough to try before, and Phil sorted out the private medicine codes I would need for treatment permission and payment. Catherine rang me and she will tell Tim Perren (the medical oncologist) and the oncology matron about the diagnosis. I’ve worked alongside Tim for many years so it will be really strange and also embarrassing to be on the receiving end of his care and expertise.

Reflection

I found this example later from Barbara Clark, who campaigned for the NHS to provide Herceptin^®: ‘I think of my cancer almost as a gift – it made me take stock. Now when I crack open an orange, I smell it. When I see frost sparkling on a leaf, I stop and look. Before, I spent my whole life rushing.’¹⁰ Well I don’t see this as a gift and I want to live to be a really old woman with Phil by my side.

4 MARCH 2006

Went to Cathy, my hairdresser at the Parkway Hotel, and explained why I wanted a short cut. She was very sympathetic, as she’s recently received treatment for a malignancy herself. She really did a good job with the colour as well and gave me blond and red highlights. Phil went for a swim while I was having it done. He loved it when he saw me and said I should have had it done years ago as I looked so much younger. My mother-in-law, Joyce, came over and it was good to focus on my new hairstyle rather than the breast cancer. My father-in-law died three years ago with prostate cancer and remembering Phil’s lymphoma she talked about the unfairness of cancer in families. I don’t feel like that as I can put my ‘professional head’ on and discuss quite objectively the latest cancer incidence in the UK as being one in three during a person’s lifetime.¹¹ Phil talks about my ‘workface’ when I’m explaining health-related topics to others and right now I think this ability to detach myself from being a patient to informer is going to help me deal with it all. Another practical thing we did was to set up an answering machine we’d had stored in a cupboard for ages, which Phil won at a charity dinner for one of the local hospices. I think it’ll be good to filter any phone calls and be selective about who we talk to right now. We couldn’t get the message recorded without giggling and we both wondered how we could still laugh at a time like this.

5 MARCH 2006

I’ve no energy to write much today. Everything just seems bleak.

6 MARCH 2006

I had to pull myself together for work as usual today. I got loads of positive comments about my new short hair and this gave me a chance to explain to some of the outpatient staff I work along side why I’d had it cut. I told Peter Selby (Professor of the Cancer Centre) whom I’ve worked with since 1990, and who has been a great support to me during my oncology career and my relationship with Phil. He was very concerned for me and also for Phil. He’s treated him for his lymphoma and continues with his yearly monitoring. I asked if we could ring him with any concerns. Another worry at the moment is that Phil is seeing the GP today about some abdominal skin lesions that have become more prominent recently. I’m used to worrying about his health in case of recurrence or secondary malignancy and hope these are just innocent lesions. It was really difficult to concentrate at work today as my mind is working overtime and I keep thinking morbid thoughts about us both. It was also a very busy clinic, which ran over to the afternoon. Tim Perren arrived for his ovarian cancer outpatient clinic, and I felt relieved when he asked to speak to me, as I’d been apprehensive about bumping into him and wondering what I would say or if I’d burst into tears. He was very kind to me as he’d received the referral from Phil Turton and had spoken to Catherine. He said, ‘this is not how it’s supposed to be’.

STRANGE USE OF COD LIVER OIL CAPSULES!

7 MARCH 2006

Had to go for the MRI scan at Cookridge Hospital today, I see this as the real start of being a patient now. The staff were lovely to me and explained everything that would happen. I felt a bit embarrassed at revealing my breasts to the male radiographer so tried to deal with it as a learning experience as I knew very little about the procedure. Had a good laugh about taping cod-liver oil capsules to my nipples to act as markers! Not so funny putting one over the tumour though, as it was so easy to find due to its large size. Also had to be careful to only wear pure gold jewellery during the scan as any other metal would be attracted to the highly magnetic field. I asked for a classical tape to be played through the headphones to drown out the loud noise the scanning generates, but they played ‘Pearl Fishers’ duet which I love. It upset me and I wept through most of the scan. I had no idea how uncomfortable and claustrophobic it was having an MRI scan and resolved to be more receptive to patient’s concerns about this in the future. Again, the nurse helped me by placing her hand on the top of my head as I had to lay face down in the ‘tunnel’. She did this just before leaving me on my own during the scan and her touch helped me to feel comforted. I could hear them speaking through the head phones and they kept me informed about the timing and when the contrast would be injected IV robotically. My arm was connected to an IV pump which the staff could control from their monitoring position outside the scanner to deliver the contrast automatically.

To try and get back to some normality afterwards, I went to work and then to see my family. My grown-up nieces were really upset and I was glad I’d taken Phil’s ski balaclava to make them laugh about any hair loss. I joked about how I could wear that and no one would notice my baldness! My sister-in-law, Chris, took a photo of me, as Phil wanted one to put in his wallet. I got really upset when Steve came home though and cried when he ga...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication Page
• Contents
• Preface
• Author’s note
• Kate’s story
• March 2006–May 2007: My breast cancer journal
• Postscript: ‘Thanks for making me feel whole again’
• References
• Glossary