Hair today…gone tomorrow!

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It’s 4.30am and I’m wide awake so thought I’d make constructive use of my time with a little update as yesterday was such a momentous day – the ceremonial shaving of my head!
For the last few days I’ve been shedding hair, leaving it everywhere in my wake – the car, a friend’s sofa, the stuff was literally dropping out at will – a very bizarre experience!

I felt anxious the couple of hours before but once actually sat in the big, black chair was strangely calm – the bottle of bubbly we went armed with helped! I had a couple of sneaky looks while Jason worked his magic with the clippers but for the most part kept my eyes closed and indulged in lots of inane chatter – distraction therapy.

As my short but very thick tresses fell away Jason said: “You’ve got a lovely shaped head under here.” What praise – I felt strangely proud and, on viewing my new, bald, noddle have to agree with him. No lumps or bumps, a nice rounded shape, could be an awful lot worse!

The general consensus is that darker hair makes me look younger (I’ve been going lighter over the last few years to cover the grey but will definitely go dark again when my hair grows back) and I adore my Chestnut Cassidy wig. So glad I splashed out and bought her as the NHS ones ordered for me to try have still not arrived. It was fate – Cassidy and I are meant to be together ūüôā

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Chemo round 1 – done and dusted!

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Well it’s two weeks today since I had my first round of chemo – and this time next week I’ll be preparing for round two. It’s felt like a long two weeks – mainly because I’m living with so much uncertainty and am in a constant state of alert about how I’m feeling, what side effects I’m suffering, am I so unwell I need to get checked out by the chemo unit, what’s my temperature etc etc

The list of possible side effects is vast, so vast I chose not to read about them all in detail, instead checking things out as they crop up. I never read the possible side effects of medication either – am a great believer these things can become self-fulfilling prophesies so it’s better to be mildly ignorant rather than to start imaging you are suffering from all manner of things! I was incredibly lucky and, while suffering from mild nausea for some of the time, I was only sick once, and that was early in week one. I did get a very sore mouth with a couple of ulcers, but that passed off last Thursday, and a very odd tingling sensation in my arms and legs, but again that was temporary.

I did have to pay a little visit to the chemo unit last Thursday as I developed some strange spots on my right arm and right breast (as if I haven’t got enough going on there!) – very inflamed looking skin with spots with a nasty looking yellow head on them. Two nurses and a doctor had a look and remained perplexed – it could be the chemo toxins being expelled from my body, but they hadn’t seen anything like it before so I was despatched home having had my temperature taken (the key indicator something is wrong) and told to ‘come back if they get worse’. Have just noticed two more on my arm today so just as well I’m seeing my oncologist this morning for a check up!

Ray was all for taking photos of the spots so we could plot their progress. He’s becoming quite the amateur photographer, taking pix of my dodgy boob so we can see how the rash and blisters are (hopefully) reducing as the treatment goes on. These pix are then downloaded from the camera immediately and hidden in a folder on my laptop so as not to frighten anyone! I also had photos taken at the Medical Imaging department at Stoke Mandeville in December. The photographer was lovely (a lady thank goodness) and she had me standing in front of a huge white screen just like a commercial photographer’s studio, topless, while she snapped away at different angles. Not quite my Gok Wan ‘How to look good naked’ moment!! 

The key side effect I suffered was tiredness, which left me so frustrated and also hugely guilty. Poor Ray would get in from work and I would literally have done absolutely nothing some days – even last Wednesday I didn’t get out of bed until 3pm! But, after much lecturing from both he and my mum, I accept it’s my body’s way of recovering and I just have to ‘go with the flow’. No one is expecting me to be doing loads of stuff, just because I’m at home and not working, it just seemed never-ending at the time. BUT the chemo fog began to lift late Thursday and on Friday I woke up before my alarm, and lay there fantasizing about a cup of tea. Since the chemo I was completely off tea and coffee, drinking lemon and ginger to combat the nausea and lots of cold squashes. That cup of tea on Friday morning was like nectar! I was also like a different person. My energy levels had soared, my head was clear and I felt normal – and boy did I make the most of it! Popped to Homebase and bought a load of half price plants and created a three tier, cascading display out of an old vegetable rack to brighten up the garden, got my car cleaned inside and out, booked a last minute manicure (chemo shatters your nails so mine were splitting and flaking but are now a short but cheery ‘pink bikini’ colour) and dyed my hair a mucky brown colour so we can both get used to me being darker when my alter ego Chestnut Cassidy makes her first appearance tomorrow when I get my head shaved.

I had been told I would start losing my hair on day 16 after chemo (so Wednesday 29th) but I starting shedding on Friday. Looked down in the evening I realised my top was covered in hair. It also comes out when I brush, or run my hands through it, and I’m shedding like a cat so I know I have made the right decision to get it shaved, it’s driving me mad! One thing I have decided is that whatever colour it grows back in, I’ll be going dark. After about three years of progressively going lighter to cover the grey, wearing the wig, and dying my hair darker again, actually makes me look younger so I’ll be staying dark. It’s not only my head where I’m losing my hair – suffice to say I won’t be needing a bikini line wax anytime soon!

As I was feeling so well on Friday I also did a ring round of hotels and booked a last minute overnight deal at a gorgeous hotel in Southampton for Saturday night – dinner, bed and breakfast for 2 for ¬£99! I would never have believed on Wednesday I would feel well enough to contemplate anything like that so it was fantastic. Those who know me know I am the consummate planner, booking holidays, weekends away, and tickets for events months (sometimes more than a year!) in advance so not being able to plan anything is quite a challenge but now I have a clearer idea of the likely pattern it is fantastic. I know I will have really good weeks, so can ‘plan’ – a little bit anyway. My life is so much more than being a cancer patient so I still plan to take advantage of offers and opportunities as they arise!

Psychologically it’s been very strange to get used to not working. From the day I left university in July 1989 I’ve been continuously employed, with only holidays and the usual ‘normal’ illnesses. When I was first diagnosed I had hoped and planned to work on my good weeks because I absolutely love my job, my colleagues and my clients. Unfortunately it became clear pretty quickly that suggestion wasn’t going to work for my company and, after I’d used up my sick leave, I would then move on to the basic Statutory Sick Pay, so the decision was taken out of my hands. Dropping from a good salary to ¬£86.70 a week is a terrifying prospect at any time but when you’re also faced with a potentially life-threatening disease it’s utterly devastating. Fortunately we have savings, and an amazingly generous family who are supporting us, so I can focus on my treatment and recovery.

Friends and family continue to be amazing and I am just so sorry that things will get worse before they get better and I will need their love and support so much over the coming months. I have a band of personal chefs making us lovely food, and receive a constant stream of texts, emails, and cards wishing me well and sharing daft jokes and photos. Keep ’em coming!! 

The treatment journey begins…..

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Well,what a week this has been!

When I first posted on January 9th we were preparing for my chemo assessment and blood tests. All went well and we were bombarded with information, particularly around the risk of infection, to the point we’ve now taken delivery of 10 mini bottles of Cutan hand sanitiser, and 12 full-size ones are arriving on Monday! Ray wondered about wearing a mask incase he gets a cold, and ideally I think he’d like to bundle me in bubble wrap and not let anyone near me for the duration of the treatment. At the very least we’ll be wearing badges telling sick people to keep away!!

Received a bit of a boost on my birthday when Moira, the nurse, asked if I could be pregnant. The pair of us just laughed – as if THAT has been on our agenda recently!! I said no and pointed out I was actually 46 that day so very unlikely on the age front either – she didn’t believe my age and insisted on doing the test anyway.¬†Nice to know I’m not as ropey looking as I feel sometimes!

Chemo day itself on Monday¬†was tiring and longer than expected as the first batch of chemo drugs¬†that came from the pharmacy were too strong (they had¬†over-looked the ratio the oncologist had requested) so had to be sent¬†back, Three hours and many phone calls from increasingly frustrated nurses they finally re-appeared and were¬†administered.¬†By¬†this time the anti-sickness medication administered by drip have been in my system for about 4 hours and¬†so the effects wouldn’t last as long after I’d had the chemo but hey, I was despatched home with so many tablets to ward off sickness (as well as injections, a sharps box, oral rinse and other bits and pieces) we really felt prepared for every eventuality.

Since Monday the days have passed in a bit of a blur. Tuesday I’m sure I was on a ‘post chemo high’,¬†with so much anti-sickness medication coursing through me I felt tired but really OK. Wednesday was therefore a bit of a shock where I literally fought¬†(and gave¬†in much of the time) to keep¬†my eyes open, and then suffered the one (and so far only) bout of sickness. Yesterday was another sleepy day – took me three attempts to watch the Sport¬†Relief Bake Off from the night before – simply kept dropping off mid way through and having to re-start – thank goodness for Sky+!!

Dr Cross (Learner) is doing a great¬†job administering my daily immune boosing injections. He’s planning¬†a tattoo of Arsenal FC on my tummy and now¬†he’s got the knack of actually giving me the jabs (didn’t feel a thing yesterday) he’s going to start on the design ūüôā

Will write¬†more in the coming days but I’ve been overwhelmed with good wishes and love and just wanted to let you¬†all¬†know how I’m doing.

Unfortunately Mocachinno Sammy and Raspberry Ice Sandie (wigs!) had not arrived on Monday so I have gone ahead ahead and bought Chestnut Cassidy (see pic¬†on post below) as she was so popular. Head shave is booked for January 28th as¬†my hair will start to drop out on the 29th¬†– yes, they can be that precise! Couldn’t bear the thought of it coming our in clumps as¬†I brush, or¬†waking to find it all over the pillow so this is my way of managing it – the control freak in me lives on!!¬†

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 ūüôā xx