The story so far…..

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Chestnut Cassidy

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
 

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27 thoughts on “The story so far…..

  1. Jane Matthews

    I too am impressed by the speed with which things have moved along. It’s no wonder you’ve only just had time to set up this blog. Really grateful to you for sharing both information it’s useful to have, and sharing yourself here Fi xx

  2. emma newman-baronius

    Hi fiona,first I’d like to wish you Ray and your family a happy new year. I know that may seem odd with the next few months ahead of you, but you have the most incredible outlook on life and it seems fitting. Please don’t feel like you’re rambling I thought it was the perfect start to your blog and I look forward to hearing more. And to find out if you meet the sexy adoiness again? I’m sure Ray won’t mind. Anyway I would like to wish you all the best lots of love em x

  3. Gary Gardiner

    Hi Fi x
    All the best for Monday x
    Me & the Boys send lots of Love & the Boys say anytime you need a hug just ask & they will come & see you 🙂
    Take care
    Gary Xxx
    P.S Think you should have your own Porn Name LOL xxxx

  4. A great start to your blog, Fi, which I am sure other people in the same situation will find very helpful, informative and uplifting too. You have a great ‘voice’ and I look forward to reading more – hoping too that your journey through this ‘experience’ will be as smooth as possible. Lots of love to you and Ray – and Happy Birthday (despite the hospital visit today). I hope it goes well.

  5. Amanda

    Heyyyyy, think this a great idea and will hopefully be theraputic at times…always good to share experiences. So glad you’re getting so much support. Laughter and positivity are definately the way forward…that was Heidi’s method. You’ll probably even surprise yourself with your inner strength and you will most certainly surprise all those around you…all those in the Harvey campcare rooting for you!!! Much love xxx

  6. kirstine

    Well done for getting it going. Charting this journey US brave but also really helpful for anyone else who night be going through the same thing. Lots of love Fi x

  7. Catherine Stribling

    I have just read this Fiona and now I am running behind getting ready for work! 😊 will be behind you and ray the whole way! Xxx

  8. Vicky R

    Brave lady and brave to share this – can’t wait until August when myself and VV can treat you to something rather nice to celebrate getting better! With you every step of the way ❤ xxx

  9. Helen Lloyd

    Aww Fi!!! Firstly I must say I absolutely love the new barnet!!! You look amazing…you had me in tears reading this just now, such a lovely way to share your journey so we can be with you every step of the way. Everything you have been through so far sounds so scary…but the fact you remain so positive is truly inspirational. I will never forget how welcome you made me feel in my first ‘proper’ job…and I remember saying to Mark after my first few days about the ‘loveliest woman you will ever meet!’. Happy birthday I hope today isn’t too difficult, see you tomorrow!! Lots of love xxx

  10. Philip Craig

    Fiona, good luck and best wishes from all of us. Feel free to drop in, we aren’t far away and on the way back to Aylesbury. And we have Sky Sports for Ray. Take care, Philip

  11. Hi Fi, you know I am thinking of you each and every day, we have been friends for ever and I knew that your blog would make me laugh and cry at the same time. Your courage is outstanding and with the love and support that you have I declare that you can’t help but succeeed…….. now I really do have to get on with some work. Linda x
    P.S I am still smiling and crying!

  12. Agata

    Hi Fi,
    I love your first post, well done !!!! I do agree you should get your own porn star name 😉
    Happy Birthday, I hope you will have a wonderful day against everything!!! It amazes me how positive you are, you are a very strong woman, I am really inspired by you. Take care and I hope to see you soon!!
    Kisses and hugs
    Agata

  13. Andy Butterworth

    Good Luck Fiona. I have no doubt you will beat it, and your approach of one day at a time has always worked for me in troubled times, so no doubt it will help you. Anything I can do in terms of support don’t hesitate to let me know. Same goes to you Ray.

  14. Di Seymour

    Brilliant blog Fi. Wishing you you didn’t It need to write it but looking forward to reading the next chapter in your journey. Xx

  15. Fi, I’m so glad to see your blog up and running. So moved by your experience and how you’re dealing with it. Equally moved by the comments here. You’re surrounded by love and good wishes through this all, Fi! All part if your journey to becoming cancer-free!

  16. Mags

    Fi – I’m so glad to see your blog up and running! Was really moved reading all the comments too. You have lots of love and a massive positive vibe behind you on this journey – we’re with you through it all! Xx

  17. karen

    So proud of you fi, no one knows in there life if they will get the big C all I know I would like to be like you fiona and smile and fight the way you are gonna do xx much love always karen xx

  18. Emma

    FI – you are an inspiration!!! This is a moving and real account and it is just excellent to read. Looking forward to more! Keep going you brave woman you must have half the world willing and sending you positive vibes You will beat this!!!! YOU ARE AWESOME!!!!

  19. Fi, you are constantly in my thoughts. Apart from being a cousin-in-law (if there is such a thing) you are a dear friend. Your attitude goes hand in hand with your eloquence. The intro to this blog is awe inspiring. I will follow your blog with great anticipation and together, with Karen, we will support you and Ray. We are both on tap, for both of you, 24/7. x

  20. Jane

    Dear Fiona – glad you have decided to share this journey like this. I think it is a hugely positive thing to do and will benefit others going through similar times – also in helping that 5% to recognise their symptoms sooner! Wishing you sterkte and humour in the months ahead. Much love x

  21. KH Lim

    Hi Fiona
    Greetings all the way from Malaysia. We shall have you in our prayers. Monday will be the start of a battle. A battle which you can win. Thousands of others have. And we will be rooting for you. Together with all the lovely friends, colleagues and partners which you have. Take care and keep all of us posted.

  22. Jan Milton-Edwards

    Brilliant blog – you should work in Comms 😉 I’m so impressed by your positive attitude and bravery. Good luck today. Sending a virtual hug x

  23. cristina

    Hi Fi…! I just read this first blog in your blog.. do you say it like that? 🙂 I hope today went well, I saw some pictures and the bandanas look great on you.. and on Ray´s!! You know I´m thinking of you from the other side of the world, and I am always sending my positive energy to you… Take care, good luck and lot of love from Manolo, Julieta, Diego, Joaquin, and me… Cristina

  24. Kathleen Miller

    Fiona! You are wonderful! This is such a good idea, it brings it so, so close to us. Probably given me a whole lot of work as I need to print it all out for my mum but can cope with that! Hope you had a good time at the seaside and it’s given you loads of extra strength for your next round. You take care and all the luck in the world xxxxx

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