Well, where do I start?
Just over six weeks ago I was diagnosed with cancer. I sat in front of a man I’d never met before, but who has since become one of the most important people I know, my consultant, who told me – with no introductory preamble or softening build-up: “The biopsy we took last week shows you have cancer in the skin of your breast. We need to find out where else it is. You will start chemotherapy within three to four weeks and must prepare to lose that breast in six months.”
I so wish someone had been filming me so I can see what my facial reaction was as his next words were: “You seem a little shell-shocked.” Understatement of the century!!
The journey to that consulting room at Wycombe General Hospital’s breast clinic started on November 8th when I saw my GP with an odd rash on my right breast and a tender nipple (apologies to any of my male friends reading – skip the next few sentences if you don’t want the gory details!) The rash had started a few weeks before as a little red mark, which coincided with me buying a couple of new bras and so which I put down to the seam of the bra, and then didn’t wear them again.
My lovely hubby Ray and I went on an amazing 24-night Caribbean cruise to celebrate our 20th wedding anniversary on October 12th and it was during those three-and-a-half weeks that the little red mark got bigger, became more like a rash, and my nipple became tender and looked inverted.
My GP acted swiftly – for which I will always be incredibly grateful – referring me that day (a Friday) to the breast care clinic, and also giving me some antibiotics in case I had an infection in my milk ducts. The breast care clinic called me on the Monday (November 11th) and saw me the following Tuesday (November 19th) – they see everyone within two weeks of a GP referral. A mammogram showed no lumps. Same with the ultrasound and, while everyone was fascinated by my odd rash, ‘gosh, never seen anything like that before’ echoed regularly round the examination and consulting rooms, my main feeling was huge relief – there were no lumps, so it couldn’t be serious, right? How wrong did I turn out to be….
An utter Adonis of a junior doctor took a biopsy of the rashed area while I lay there swooning at him, with a revolting looking boob exposed, uttering the words, “gosh, you’re tall aren’t you?” The no-nonsense nurse with me laughed and said: “They all look tall from down there.”
I had that biopsy, was told to return the following Tuesday (November 26th) and left, misguidedly under the impression it WAS an infection and they were checking to find out what it was before giving me something to clear it. The focus with detecting breast cancer is always on lumps so when they didn’t find any I (naively as it turns out) never gave cancer a second thought.
Fast forward to the 26th – that’s the day I got the initial diagnosis – and for the following 8 days my feet did not touch the ground. The NHS proved itself to be a slick, well-oiled machine, staffed by caring professionals who gave me fantastic treatment. Four more visits to Wycombe followed for a bone scan, CT and MRI, plus a ‘second look’ ultrasound after the MRI detected lumps so three more biopsies were taken.
On December 9th it was confirmed that all the biopsies were malignant and that the odd presentation (rash and nipple tenderness) is called Paget’s Disease and only happens in 5% of breast cancer cases. Since then the pace of activity has slowed, much to my frustration, but Christmas and New Year have got in the way and, when I expressed concern at being in limbo for 2-3 weeks, my consultant simply said the cancer has been developing for around 18 months, another couple of weeks is not going to make any difference.
Since December 9th I’ve seen the oncologist, had photos taken of the offending boob, met the ‘wig woman’ and today, my birthday, have a meeting with the chemo team and blood tests in preparation for my first round on chemo on Monday (January 13th).
I’ll be having six rounds of chemo, one every three weeks, then a mastectomy, followed by radiotherapy, so have quite a journey ahead of me. If all goes according to the rough timescales I’ve been given I should finish all treatment by the end of August – a very distant prospect at the moment but I am just going to take one day at a time, as each day is a day closer to beating this awful disease and being cancer free :).
I’ve talked about setting up a blog since this journey began but today seems appropriate for actually ‘go live’ with the first post. Am conscious this one is long and a bit rambling but I have a lot to cover – six weeks! Subsequent posts will be shorter and added more regularly. Hopefully I have got the hang of the technology (have downloaded the app on my mobile and iPad so will be able to post wherever I am) but please forgive any glitches! I have a social media consultant among my lovely friends and may be picking her brains if things go pear-shaped!!
Much of what has happened over the last six weeks has been utterly terrifying and completely bewildering but there have also been some entertaining moments which I want to capture and share – reminding myself of the great people I have met so far and perhaps helping others who follow me on this journey in the future.
It’ll be the mauve chairs on Monday….
I had three trips to radiology at Wycombe on consecutive days. First up was the bone scan for which I had to go at 11.30am to be injected with radioactive isotopes, returning three hours later for the actual scan. I was convinced I felt warm as the injection spread round my body, making me glow like on the ReadyBrek adverts! When I booked in for the scan the receptionist directed me to the ‘green chairs at the bottom of the corridor’. Looking around I realised there were chairs of many colours around the department. I explained I was coming back for two other scans and that I was told the paperwork for those would be left at the desk in case it didn’t make it by post in time. She handed over two envelopes containing the instructions for the CT and MRI scans, gently took my hand and said “it’ll be the mauve chairs on Monday and Tuesday.”
The reality of CT and MRI scans
The next two scans have got to be the most surreal experience to date. Fortunately my step-daughter made a throw away comment about the MRI the night before I had it, or I think I would have been totally floored. I knew it would be noisy (it is, incredibly, even if you’re deaf – I wear hearing aids but took them out – and are wearing the industrial size headphones they issue you with!) but Tina said the strangest thing was having to lie face down with her boobs down two holes!! She underwent investigations last year so knew exactly what was going to happen – and thank goodness she told me. I was indeed asked to lie face down with my boobs down two holes in the bed. A colleague said: “I hope the holes were adjustable size-wise.” Let me tell you they are not – much pushing and prodding is needed to get everything in exactly the right position!!
The CT brought its own special treat too. I’d been warned about feeling hot flushes and a metallic taste in my mouth but just before the contrast fluid was injected they mentioned a third possible reaction – feeling like you’re wetting yourself. “Will I be wetting myself?” I asked. No was the response. My goodness am I glad they forewarned me. It felt like Niagara Falls between my legs!
My 70s porn star name….
I’ve been told categorically I will lose my hair so have been trying out wigs and also bought a couple of bandanas and fluorescent pink and purple sleep caps (suddenly realised my head will get really cold at night without my mop of short but thick hair to keep it toasty) – no danger of Ray not spotting me the colours I’ve chosen. A friend took me to a wig supplier in London, just to try some on, and that actually turned out to be a fantastic experience. I really didn’t know how to react but the assistant was lovely, suggested I try all sorts of lengths, colours and styles and, despite imagining that this would be my opportunity to have long flowing locks, the shorter styles, most similar to my own looked so much better – but darker, more like my natural colour before I started going grey and having it highlighted! All wigs – no matter where you get them – have a colour and an American woman’s name as the style. The favoured one in London is ‘Chestnut Cassidy’ and the two that have been ordered by the NHS wig lady for me to try are ‘Mochaccino Sammy’ and ‘Raspberry Ice Sandie’ – all sound like dodgy 70s porn star names! A pic of me as ‘Chestnut Cassidy’ will hopefully appear in this post and pix may follow on Monday when Sandie and Sammy arrive and I can try them on!! Have decided to have my hair shaved off before it starts dropping out (16 days after first round of chemo apparently) as it feels like the one and only thing I can actually control so D-Day for my hair is likely to be around January 28th.
Well, I realise this is getting very long so I will sign off now but will post regularly – still have lots to say but realise I don’t have to say it all in one go!!
Thanks for reading and thanks to all my amazing friends, family, colleagues, clients, and health professionals I have met along the way so far. Your love and support is keeping me bouyed up. Keeping positive is a crucial factor in fighting this disease so keep the positive vibes flowing my way 🙂 xx