My Diagnosis Story
What symptoms led up to your diagnosis?
I had no symptoms known to me. I was 31 & separating from my soul mate & love of my life as, after 16 years, I could no longer bear the family racism & lack of acceptance of me by his father & the deafening silence from the rest. I was distracted studying for my masters degree; travelling weekly up from London to Manchester, then Lancashire to visit my parents, especially providing support to my repeatedly suicidal mother! I had a relatively new & more senior job, only been there 6 months & work pressure was mounting. My greatest support were my 2 Lhasa Apso dogs; especially my Toby! It was early am 8 June, 2 days before my 32nd birthday & Toby insistently jumped upon me in bed. It hurt & as I felt where he'd patted, I felt a tiny granular lump. I called Declan from the spare room to come & feel it & he too agreed it was a lump & a new arrival. I phoned my GP immediately & got an appointment for 20th June! Earliest date available as a young woman with a breast lump wasn't viewed as urgent. I saw my GP who dismissed it as nothing & told me to take 1000mg of evening primrose oil daily. I'm adopted & couldn't give any family medical history but that too didn't matter. I monitored the lump myself & as it grew through my menstrual cycle I returned to my GP (Renee Castell) 3 weeks later. She poo-pooed it again & refused to refer me onto secondary care for further investigations. I know she was trying to reassure me but it wasn't working. I worked in the NHS so I was system savvy. I'd taken a prepared letter with me for Dr Castell to sign saying she was so sure it wasn't anything sinister that she was refusing to refer me to secondary care! She was clearly irritated then by me & refused to sign the letter. I then said I wanted /needed a secondary care referral as I was no more certain of what it was than she was but it was my life under threat; not hers. Eventually she referred me to the hospital but refused to make the referral urgent as she said she felt it was unnecessary & she was not having me take up priority appointments from those who needed them. My appointment arrived from Farnborough hospital for 21 August 1995; 2 months after I'd seen my GP & the day after Declan, my husband, moved out of our home together.
What tests did your doctor do, and what was this experience like?
I went to the hospital alone with masses of work files I was working on as I waited. The clinic was running very late so I was glad for the distraction. I saw Caroline Midwood as my Consultant surgeon & Rachel as my specialist breast nurse. Both were absolutely lovely people. As I watched Caroline's facial expressions through-out my examination I noticed her expression change dramatically as she palpated my lump. It had grown significantly. As I lay down now you could see it slightly poking through my skin. I knew she thought it was sinister but she said nothing. She referred me for an immediate ultrasound that afternoon. I was hesitant as I needed to see a man & was suffering terminal embarrassment! There were no female Radiologists! She also referred me for both breasts mammogram the same afternoon. She left her clinic and personally escorted me downstairs to the relevant places for my diagnostic tests! This too told me she was very concerned. Mammogram over Caroline took me to the radiologist & I shared with him my reluctance to see him; he introduced himself as Simon. There was an elderly woman from 'friends of the hospital' chaperoning him but that didn't stop him saying I looked like a woman from a pre-raphaelite painting lying topless with my waist length thick dark curls! I wanted to curl up & die on the spot. It was a worse experience than I ever could've imagined regarding physical embarrassment. Simon shrieked as he completed my ultrasound! Brilliant he said; nothing sinister you have a benign fibro-adenoma; lovingly known as a breast mouse. He went onto say it should still be removed as it was 'becoming unsightly' through my skin when I lay down. Caroline collected me again & Simon gave her the good news. Her face signalled confusion; not relief. We then went back to her room & she inserted a needle into the lump to aspirate cells away for histopathology examination. A follow-up appointment was made for 25 August 1995. I returned, again with work files & was seen as the last person in her clinic; so I waited what seemed an age. I eventually went in & sat down & Caroline said 'I'm afraid something very nasty is going on inside there'; as she pointed at my chest. I became numb & voices seemed muffled, indistinct & far away. I was then introduced to the many others who filled the room; including a Macmillan nurse. I immediately said that I was sorry but I associated Macmillan with terminal care & until I was sure I was dying I should like her & her colleagues to leave. Without ceremony she left. It was my first decision in taking control when everything was spiraling out of control. I then told Caroline that beyond the something nasty I'd heard nothing more of what she'd said until Macmillan so please would she start again, which she did! Second decision for me of taking some control. Instantly, I knew retaining control was for me my only future. I was introduced to Jane Dobbs who was to be my Consultant Oncologist; she too was lovely. Jane & Caroline said that Caroline suspected it was a high grade tumour & that I would need surgery, chemotherapy & radiotherapy as interventions. Caroline added that the histopathology report was not yet available to confirm or deny her suspicions based upon her professional wisdom.
Upon learning about your diagnosis, what happened next?
I was then booked in for an MRI, liver scan & bone scan as part of the staging process; to see if my cancer had spread or not. I was scheduled for surgery on 7 September 1995. Rachel then said as I was again alone & it was Friday night with no access to the breast care team over the weekend who could she call to ensure I had support. It then became apparent I had no-one! I didn't want to worry my parents. My husband had left the day before my first OPD appointment & was now living in some friends' garage in Hampshire. I had no siblings or other close family. She wouldn't let me go until I'd called someone so I worked my way through friends' numbers leaving voicemail messages that i'd called but no-one answered. I felt desolate until I finally got through to my boss at work, Natalie Tiddy. Just who I needed & Rachel didn't. Down to earth no messing no sympathy Natalie took the cancer diagnosis news as she did everything else utterly unphased in her stride! Said she hoped I'd survive & would see me at work on Monday! Reluctantly Rachel then let me go home. I went to Guy's for my MRI & was amazed by how noisy it was but also as I lay motionless in a high tech capsule how almost science fictional my life now seemed. I went to the Brooke hospital for my bone scan. The Phlebotomist was all alone in the building as the hospital was closing & being decanted. He was young & chatty & told me only 2 weeks earlier he'd been working on the electrical engineering project at the Glades shopping centre in Bromley. I was his first 'dye' for bone scanning! I can't say it filled me with confidence & was alarmed as he was totally alone when I knew he shouldn't be but all went well. The bone scan was more painless science fiction & I went home again.
Last was the liver ultrasound & a raft of blood tests. The radiographer was absolutely loved me & kept me informed of all he was scanning & what a healthy liver he was finding. I left happy although pin-cushioned from the blood tests. I returned for my 3rd OPD appointment, last on a Monday afternoon with Rachel Caroline & Jane. All my scan tests were back & NAD (nothing abnormal detected). Yay! I was due for admission Thursday for surgery am Friday. That was all fine but I couldn't see why I had to stay in overnight Thursday; so much to ward sister Joy's disgust I went home. Surgery was fine & soon afterwards Caroline emerged to say she believed she'd removed the entire tumour with clear margins; yippee! The ward in Bromley Hospital was T shaped & we 4 breast cancer patients were along the top of the T with patio doors opening onto large open gardens.
Sister Joy(less) ruled the ward with a will of iron. We disliked each other from first meeting. I found my cancer gave me new freedoms of speech. If I were facing the proposition of death I was going to live & or die my way.
Caroline said if I felt up to it I should get dressed & mobilise as normally as possible as quickly as possible. Joy to my ears but not to sister Joy.
The other 3 breast cancer patients in my little unit were very much older than me; old enough to be my grandparents. So other than gender & a cancer diagnosis we had little else in common. Our needs were at variance to each other too. I needed to mobilise & normalise my life as quickly as possible with my healthy friends but the others needed quiet. It seemed only sensible therefore for me, with visitors, one of whom was a doctor, to walk into the gardens & chat & play music sitting on a garden bench. I'd left a message with a nurse & taken my mobile & left my number & a written note to say I'd come back immediately I was needed. Sr Joy was furious & demanded I returned to my bed; because she said so! I refused & battle lines were drawn. I realised then I no longer cared about the consequences or impacts of drawing my boundaries or 'battle grounds' and that remained with me. None of my family, including my parents visited me. None of Declan's family visited me. I was very alone. If it had to be it was up to me1
With Caroline's permission, friends & my surgical drains in shoulder bags I went out to a late long restaurant lunch with live music & Monday morning with only Caroline's permission I was discharged home! It felt like a great escape.
Wednesday I returned to the hospital OPD for follow-up & permission to return to work the following day; Thursday.
