Breast cancer photo diary – Diagnosis, treatment, hair loss and beyond

Today is the two-year anniversary of the date that I finished chemotherapy treatment for breast cancer.

Whilst it’s been a long time in the making, my intention was always to post a photo diary in the hope that it would helps others who have either just been diagnosed, are soon to start chemotherapy, are currently having treatment or those whose hair is starting to grow back.

 

Supporting the fighters, admiring the survivors and honouring those who have been taken too soon.

You might also be interested in my posts about The big countdown…waiting for chemo to start and How I felt losing my hair.

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Breast cancer survivor’s thoughts on ticking off the bucket list

I’m a big fan of lists – I love a list! Feeling organised, setting goals, not making the mistake of forgetting something and being in control. Whilst some might call it being slightly anal, you can’t beat the feeling of the positive emotions released when ticking off a completed task, reminder or goal.

Some years ago I watched the 2007 film, The Bucket List. The story of two men – strangers, meeting in a cancer ward, both having been diagnosed with terminal lung cancer. They went on to develop a close bond and friendship on their round the world adventures, fulfilling all the dreams on their list.

I suppose I thought a bucket list was one of those things I’d contemplate making later on in life, although I’ve really no idea why. I guess getting older, realising the opportunities to do things are diminishing and wishing to squeeze things into life. This clearly doesn’t make sense! Life is one great big bucket list – goals, ambitions, dreams and desires to be fulfilled. Admittedly, it’s a life ruled mostly by inescapable responsibilities (often the things that give us purpose in life) and undoubtedly sprinkled with tough times – pain, anxiety, fear, worry and grief. Memories we wish we could erase from our lives. But if we aren’t the master of our own lives…who is?

It will be two years ago next month that I finished chemotherapy treatment for breast cancer.  As we’ve now entered October, Breast Cancer Awareness month, I think we’d all agree that we’re all very much ‘aware’ of breast cancer. It’s a cure that we need. Jenefer Phoenix  recently tweeted using the #BreastCancerRealityCheck hashtag (cancer patients and survivors telling their truth about what it means to have primary or secondary/metastatic breast cancer):

#BreastCancerRealityCheck is friends expecting you to have a renewed zest for life but instead you have an overwhelming awareness of death.

This is so true. After having had such a close-up encounter with one’s mortality, it’s very difficult not to live in fear. Unbelievably hard not to think the worst – that any ache or pain you have means it’s come back. And for those living with metastatic cancer, it must be hard trying to escape the dark ubiquitous thoughts occupying the mind on a daily basis – very overwhelming indeed.

I’ve had huge lows dealing with and surviving this indiscriminate and cruel disease.  Thankfully these have been uplifted by the many highs I’ve also experienced along the way too. Always cherishing fond memories of spending happy times with family and friends and enjoying all manner of experiences that bring joy and happiness to life.

Now more than ever, I am more thankful for this precious life, knowing how quickly and easily it can be stolen from us.  So, I have started to create my own bucket list! My hubby absolutely detests this phrase. He believes it should be given a much more positive term such as a ‘living list’. He’s probably right.

After finishing active treatment last year, I only realised how little energy I had until I found myself bounding out of bed, pottering in the garden for hours, cleaning and even painting our bedroom and lounge…all things that previously would have tired me out just at the thought.

I knew my husband had been taking on much more of his fair share in keeping up our home and household chores. I’d felt guilty, feeling like I was being lazy, but in hindsight, I can see I just didn’t have the energy. Going back to work full time took everything I had at the time, the thought of going out socialising and doing other things on top was just too much.

bad days will pass

As hard as it is at the time to see into the future without the dreaded C word impacting your life – taking over your thoughts, your worries, your time, your body, your freedom. The saying ‘it soon shall pass’ is very true.

I met a very upbeat and positive lady just before I was about to start chemotherapy treatment. Being able to talk through worries and concerns with someone who had been in my own shoes helped so much. She lent me scarves to wear and showed me different tricks and ways to make them look better. She said ‘In a year’s time, you’ll look back on this part of your life as a blip. Your fears will lessen and it won’t consume you.  Some positive things can come out of this.’ After finishing her treatment she’d gone on to achieve the life-long ambition of climbing Mount Kilimanjaro, as well as all sorts of travels to amazing places. She inspired me and I took great courage from her words.

Sadly this is not true for many, many people. The tragic passing of an old friend earlier this year from pancreatic cancer, just a few years older than me, brings home once again the devastation and loss this evil disease rips through lives.  Comprehending the horror of hearing you only have months to live – I cannot begin to imagine how one copes with being dealt that card. A once in a lifetime honeymoon trip followed by a fun, but bittersweet, wedding party. Only for his life to then have been cruelly cut much shorter than anticipated. How incomprehensible for a wedding and funeral to happen in the space of less than a month.

I have such tremendous feelings of deep sadness for his wife, family and dear friends. Also a massive guilt about why I was lucky to survive and he didn’t. I’d be lying if I said I hadn’t thought of how my funeral would be – which songs I’d want and where I’d like my ashes sprinkled. All these fears were played out in reality for such a fun-loving man, taken in the prime of his life.

I’m pleased that life is now allowing me the time and energy to spread my wings again and be much more of a social butterfly. I have ticked off so many fab things already on my ‘living list’. A trip in a beautiful 1960s split screen VW campervan, a family holiday abroad, a night at Ronnie Scott’s Jazz club, a trip to Edinburgh and staying with dear friends in Scotland, watching Jools Holland, a weekend in a cosy cottage with a fire and hot tub, being being pampered on girly spa weekends, learning how to make pottery, a trip to beautiful Bath, eating in a Michelin starred restaurant, a trip to Glastonbury, a day out at Wimbledon, watching Gregory Porter live at the stunning Blenheim Palace, dancing the night away to Craig Charles’ Funk & Soul show and laughing my socks off at Micky Flanagan! So, so many wonderful memories.  And as I sit and type now looking out over the crystal clear, sparkling azure of the Balearic Sea in Ibiza, another wish ticked off my list.

Still so, so many things and places to go on my list.  Cuba, the Maldives, Santorini, The Cheltenham Jazz Festival, Hawaii, Croatia, staying in a beach bungalow over the Indian Ocean, The 606 Club, writing a book, learning and studying… I can’t wait to tick even more off my list!

What’s on your bucket list? I’d love to hear what experiences and goals you want to achieve.

You might also be interested to read my posts on New beginnings and Inspiring and motivational poetry.

Image by berry.com.

£3,325 raised for Breast Cancer Care to support people affected by breast cancer

On 14thOctober, I organised a Big Pink Friday event at my work (Nviro in Portsmouth) for Breast Cancer Care – the only UK-wide specialist breast cancer support charity.

bccbigpink1-alliemoonjourney-copyWe were delighted to be able to raise over £325 from our dress down, cake sale and raffle prize draw. My colleagues really got into the spirit of the day by baking cakes and paying  money to dress in pink – adorning themselves with sparkly crowns, deely boppers, wigs and cowboy hats. There was also an award for the ‘Best Dressed in Pink’ which went to our regional director with his fetching pink golf trousers, shirt and tie combo!

I know that a lot of cancer patients and survivors absolutely detest the pink season of breast cancer awareness month. Greedy companies getting on the band wagon making money out of pink branded products. Downplaying the subject and not really raising awareness. I do completely understand how these people feel about the ‘fluffy pink brigade’. However, having been through my own cancer experience, Breast Cancer Care were a massive support to me through a very distressing period of my life and I was very keen to fundraise for them and be able to give something back to this amazing charity.

Breast Cancer Care were there for me in so many ways and I cannot thank them enough. Through the many calls I made to their supportive helpline (0808 800 6000), the myriad of useful and easy to digest information booklets and their forum that enabled me to connect with, and gain support from, other cancer patients at all times of the day and night. Their Someone Like Me service put in touch with two vey kind volunteers – people who had been given a similar diagnosis and treatment plan – who let me talk through my fears and worries and who completely understood my personal concerns. I also used their Ask the Nurse service which is useful if you’d rather not speak to someone on the phone. You can email questions to their specialist nurses and quickly receive information back in writing.

As I’ve written about in a previous post, I also attended a free two-day Younger Women Together event in Bristol which is aimed specifically at women aged 20-45 who have been diagnosed with primary breast cancer. I learnt a lot from the sessions they hosted and benefited from connecting with other women of my age who had similar experiences. Because I lived more than two hours away from the venue, Breast Cancer Care also kindly covered the cost of my hotel stay for the night before the event and the following night.

I also attended their Moving Forward course as I was approaching the end of my treatment. This free four-week programme covered topics such as healthy eating, exercise, managing menopausal symptoms, lymphoedema, cancer fatigue, intimacy and relationships and adjusting and adapting after a diagnosis of breast cancer. It was also good to connect with other ladies and relate to all the side effects and issues we faced.

Back in January time, the BBC journalist, Victoria Derbyshire, was undergoing chemotherapy treatment and through her diaries she detailed her account of losing her hair. A couple of months prior to this I had signed up to be a Media Volunteer for Breast Cancer Care and was approached through them by the Daily Mirror. In support of Victoria’s diaries, they were running a piece on ladies who had lost their hair from breast cancer treatment and asked if I would be interested in sharing my own experience about losing my hair.

At this point in time I was just reaching the end of radiotherapy and my active treatment and combined with starting my Zolodex injections, I was emotionally all over the place and it was a very distressing point for me. In hindsight, I’m not sure I would have agreed to do it had I have been in a better frame of mind. I felt hesitant at first, but really wanted to be able to help other women who were going through a similar situation and also help promote the charity, so I agreed to be interviewed.

Other than my hubby and my best mate, I didn’t tell anyone about the article, after all I clearly wasn’t doing it for fame purposes and I don’t really like the photos of myself in it with little or no hair. As it turned out the Daily Mail ran the article too and a few people from work then contacted me to say that they’d read the article and congratulated me on doing it as well as passing on their well wishes. Whilst this was clearly going in a national newspaper, for some reason I didn’t really consider that people I knew might see it (yes, I know how silly that sounds now!).

Now, as I have finished my more active treatment and life has returned to ‘normal’, I use Breast Cancer Care’s services much less. I do now receive their free regular Vita magazine which I’d recommend to other breast cancer patients/survivors to subscribe to.

One in eight women will be diagnosed with breast cancer during their lifetime. Unfortunately it is a disease that has touched many of our lives in some way, whether it’s through a friend or loved one being diagnosed, or through our own personal encounter. As October is now coming to a close and breast cancer awareness month ends for another year, despite all the pink fan fare, ultimately every penny raised through events like this will help Breast Cancer Care and other charities to continue to support anyone affected by breast cancer.

Fiona West, Fundraising Officer at Breast Cancer Care, added: “We’re so grateful to Nviro for holding a Big Pink event in aid of Breast Cancer Care. With the help of supporters like Nviro we can provide care, support and information to anyone affected by breast cancer. An estimated 691,000 people in the UK are currently living with a breast cancer diagnosis so there has never been such an urgent need for our support services.”

bccbigpink2-alliemoonjourney-copy

I was very touched by some of the kind donations I received for our raffle and would like to personally thank everyone who bought tickets and to the following supporters for their generosity and great prizes: Lucy Alderton (Cable-Talk UK), Deborah Queen (Estee Lauder), Jeff Whiley (JM2 Support Services), Kirsten Lewry (K’s Wooden Crafts), Karen Font-Garcia (Golden Light Reiki School), Jacqueline Snow (Love Snowberry), Monica Kelleway and Elanor Clarke. Also huge thanks goes to my very dear friend (who wishes to remain anonymous) for the very generous and kind donation to this charity helping us raise a whopping total of over £3,325.

It’s not too late to make a donation! Click here to donate online, or alternatively you can text  ‘BIGP95’ and the amount you wish to donate to 70070 (e.g. ‘BIGP95 £95).

Click here to find out more about Breast Cancer Care and the care, support and information they provide.

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A kinky tale | Chemo curls after breast cancer treatment

After finding out I was being made redundant back in April, it felt like life was conspiring to push me out of my comfort zone. Rather than go against it, I decided to go with it, to embrace it and get amongst it!

comfort-zone-alliemoonjourney

Step into the fire of your fear. Or, as one book title says, “Feel the fear and do it anyway.” You don’t need to be free of fear to make a bold move out of your comfort zone. You just need to step right through it. – lifehack.org

First off I ditched my wig. What had been a terrifying prospect to get used to wearing out in public, had ended up serving as an enormous comfort blanket for a period of over 7 months. Ironically, it felt weird and rather frightening to be going out without it.

butterfly4_alliemoonjourneyAfter being on garden leave for a period of time during the redundancy process, the day I went back into the office I decided was the perfect opportunity to go in without my wig on. It felt daunting, people had got used to seeing this new version of me. I had to go through that vulnerability all over again but in reverse. Despite this fear, I actually found it really rather liberating. I felt like I was saying sod you to those who were doing this to me, whilst also taking a bit of control back. I walked with my head held high and thought to myself ‘You’re not knocking me down!’

For the vast majority of my 20s and 30s, I’ve had long, straight, blonde hair. I’m a creature of comfort when it comes to hairstyles and had never had the balls to do anything drastic to my hair (apart from those days, way back, when my hair was permed and I resembled a poodle on heat!).

Now, after having chemotherapy last year, I’m sporting the complete opposite of my previous locks – it’s dark, it’s thick and it’s very curly. The curl didn’t really show in my hair straight away because it was so short, but oh yes, it is growing in a way that I never imagined it could from my own head! Very mad indeed.

Friends and family have been complimentary about my hair and a lot of people have said they prefer me with darker hair and that I also suit having it shorter. Of course, they could just be being polite and kind. If I had a pound every time someone said “You must be really pleased with it,” I’d be, well no, I wouldn’t quite be rich, but I’d have a fair few squid in my purse!

I know that when people say this they’re just trying to say something nice, something positive, something to make me feel better about myself. Something I’d likely say myself if I were stood in their shoes, no doubt trying to conjure up some feel good factor words. I’m too polite to say that actually, I’d rather not have one-inch thick curly hair. I’d desperately like to have my longer, more feminine hair again. To experience the feel of soft hair around my face and neck again.

shorthair-alliemoonjourneyI often feel very boyish with short hair. I once had all my hair cut off when I was about 11, a stick-thin, prepubescent teenager and I looked like a boy – I vowed never to have my hair cut short again. Now, even if I’m wearing a dress, I sometimes feel when I look in the mirror that a man wearing a dress is staring back at me.

My first trip to the hairdressers felt quite odd. I’d not been for 10 months and my hair was getting quite unruly. I’m told I need to wait for the top part (fringe etc) to grow out and to keep having the rest trimmed and eventually it will be the same length. Each time I have it cut I feel like I’m taking a step backwards as it’s shorter again. I don’t realise how much it has grown until I look back to photos taken earlier on this year and I can see that it has (hair diary post to come!).

With each bit of growth, a newer, slightly different way of styling is needed. I’ve never had so many styling products on my dressing table! I used to be able to get out of bed and my hair would pretty much resemble how it looked when I had got in it the night before. Now, I wake up looking like Elvis after a weekend-long bender in Vegas!

But this is the way it is to be for now. I have been forced into having a new look and, whilst it wasn’t through choice, I’m trying to embrace the many changing faces (or hairstyles) of the new Allie Moon.

A couple of recent events have brought it to the fore once again just how short life is and to enjoy and make the most of it every way we can whilst we’re able to. My new found liberation after ditching the wig has also led me into trying other new things. I’ve started trying to eat differently and choose a variety of foods that I wouldn’t normally. To say ‘sod it’ more and try something new, you never know where it might lead you. In the words of Brian Mayne “Find the thing that makes your heart sing.”

I’m now contemplating joining a singing group following a recent guitar class. In my lesson, my teacher introduced singing along whilst playing on the guitar (something I’ve not managed to master to date!). It was such an uplifting session, I felt so elated and I sang all the way home in my car like Julie Andrews in the Sound of Music!

Interviewing for a new job was also quite stressful and terrifying but as the people I was meeting were all new, they had no idea that I looked completely different to how I used to. The fear of interviewing quickly changed to positivity and satisfaction as I gained encouragement after each meeting I had.

“Stepping outside your comfort zone is supposed to feel uncomfortable because we’re in new and unfamiliar territory. Being uncomfortable is a sign of success, NOT of failure! So if we are uncomfortably outside our comfort zones, then than means we are growing!!! And THAT is cause for celebration!” – Roz Savage

I’ve also volunteered to help the Breast Cancer Haven in a local event that they’re hosting. This wonderful charity has helped and supported me tremendously over the last year with counselling, reflexology sessions and their younger women support group. This will be a great opportunity to be give something back and do some fundraising for them.

Has your hair gone crazy after chemo? How long has it lasted for and do you have any tips on styling and looking after your hair that you can share?

You might also be interested in my posts about New beginnings and Canciversary.

Images by smartandrelentless.com and magnificatmealmovement.com.

Breast friends – our first threesome!

Well, who would have thought it? Publicly blogging about our first threesome?! Okay, well you’ll pleased to know it wasn’t actually that sort of threesome! Through the powers of this blog I have had the pleasure of connecting with many amazing women from all corners of this world. But somehow last year (and I can’t even place exactly when it happened) I connected with two very inspiring ladies – Rosemary  and Dee – who were also blogging about their own experience of having breast cancer.

I had the pleasure of meeting up with Rosemary in the summer time last year when I was going through chemo. She is such a kind, gentle and caring person. Within minutes of meeting her, she had presented me with a basket of the most thoughtfully and carefully selected presents, all individually and beautifully wrapped to be opened at various times throughout my treatment when I needed a little bit of help – a bit of oomph to keep me going through the tough times, a bit of loving care.

In the new year, Dee had made a proactive and very welcome suggestion for the three of us to get together. We’d all been diagnosed around a similar time, and uncannily we had pretty much all received the same diagnosis. We gleefully set a date to all meet up at the beginning of May. (We would have met much earlier on this year had it not been for my random and somewhat crazy diary movements.)

In the meantime, and to my delight, I found out that my dear family from Canada were making the trek across the pond to come and pay us a visit. They were due here on the same weekend that I’d agreed to meet up with Rosemary and Dee. I desperately didn’t want to let them down, but having not seen my family for a few years, I obviously couldn’t pass up the opportunity to spend some quality time with them, so my friends gladly re-arranged our plans.

And so, after many months of reading each other’s blogs, listening to each other’s similar experiences, messaging and supporting each other – this weekend we finally all came together as a threesome.

sisterhood

I had been looking forward with so much anticipation to our weekend together. Having been in such close contact with one another over the last year, I was excited for our virtual friendships to transform into face-to-face reality.

After initially greeting Rosemary, her lovely husband Steve (and their very friendly neighbours) Dee arrived and we all gave each other a hug. It was like meeting good friends who you hadn’t seen in a long time. There was no awkwardness, no embarrassment, we just enjoyed being in one another’s company.

Rosemary and her husband were superb hosts and they gave us the most warmest and loving welcome into their beautiful home. We were completely spoilt with delicious and tantalising food and wine and we spent the weekend eating, drinking, nattering and laughing together… the hours just literally vanished!

We talked passionately about our love of writing and blogging, what ultimately brought us together, and how much it had helped each of us throughout the whole experience of having cancer. It was very comforting to be able to talk openly about our experiences, warts and all, and to gain support and strength from each other.

support

We were also lucky enough to meet Rosemary and Steve’s charming young son, his lovely partner and their gorgeous new little baby boy – what a sweetheart!

There are many fond and humorous memories I shall take away with me from this weekend, not least the legendary magic roundabout, banana tea and the FILTHY oven (not Rosemary’s I might add!) and we are already eagerly anticipating our next meet up.

I thank all of my nearest and dearest who have so tenderly and lovingly held my hand and walked this path with me since last year. And I thank you Rosemary and Dee, despite the shitty circumstances in which we came to meet, I am truly blessed and honoured to have two such amazing ladies in my life who I can genuinely call my friends.

Click the links below to read both of their brilliant blogs:

breast friends

Final chemo, CT and heart scan

I had so many mixed feelings from my appointments at the hospital last week. I was feeling so, so relieved that the final chemotherapy infusion was going in. I sure was glad to be climbing that last hurdle of a very long and tiring race. When I started my chemo back at the beginning of August, this time in November seemed like such a long time away and actually the latter part of my treatment did seem to go by much more quickly.

chemo
At last, the final chemo!

I also had my first radiotherapy appointment where I had a CT scan and was measured for my forthcoming treatments. Pats and I both went into the scanning room and the radiologist explained to us everything that was going to happen. There was a male student in the room as well and she asked if I would mind him being part of the planning session or to just observe. To be honest I didn’t feel particularly comfortable with him being there, but I didn’t want to hamper his learning opportunity either so very shyly agreed for him to be present. Pats then left the room and I went into the cubicle to get undressed.

I knew the scan wasn’t going to be painful but I began to get upset standing there with my blue bit of paper covering my modesty (not a large piece I might add!).  I climbed onto the bed and they placed both my arms in stirrups either side of me. This in itself was a strange experience and I felt like I was about to be tortured. As hard as I tried, I just couldn’t stop the tears from rolling and both the nurses could see I was upset so went and got Pats who was waiting for me outside. He came and held my hand whilst they took their measurements of me. I felt rather silly crying, but I can’t imagine I’m the only one who has. It just brings such an enormity to the whole thing and magnifies and intensifies everything that’s going on.

After the radiographers and Pats left the room, I lay there on my own splayed out on the bed as it began to move in and out of the big ‘polo mint’ machine. It’s over pretty quickly and I was desperately trying to take my mind off the whole experience by thinking of all the good times I’ve had in my life.

CTplanner

After a few minutes I was rejoined by both nurses and Pats and then had small permanent tattoo ink markers placed on three places – one in the middle of my chest and another one on each side. It was done with a small needle and wasn’t too painful at all and they are actually smaller than I thought they would be.

We left the radio department and went straight to the chemo day unit for my very last treatment. I was given the choice of being in the open area or in a separate room. I figured it would be nice to have a separate room, a) to compose myself after the previous appointment and b) well, just because we could!

The final part of the day was to have my Picc line removed. As I hadn’t had any infections or stints in hospital with the chemo, my oncologist said I would be okay to have it out after the last treatment. Wow – getting my arm back at last! They’d said that I wouldn’t feel it coming out but naturally I was apprehensive about them tugging a plastic tube out of my vein! I felt a slight tugging sensation and was amazed to see the line coming out, but had to look away as it was actually quite gross to see. Then it stopped and wouldn’t come out any further. The muscle in my arm had gone into spasm so was effectively clenching onto the line so it wouldn’t come out. The nurse put a heat pad on for 15 minutes and luckily this relaxed the muscle and the rest of it came out. Yey, a little bit of me back. I had to to wear a plaster on it for the following two days but have now had the pleasure of standing under a shower instead of having daily baths waving my hand in the air trying not get it wet! Oh it’s the little things in life : )

Our third and final trip to the hospital that week was to have my echocardiogram (heart scan). Because I am HER2+ I need to have Herceptin® (trastuzumab), an adjuvent targeted therapy which will reduce the risk of the cancer coming back and will comprise of three-weekly injections for a period of a year.

Because there is a low risk that Herceptin can cause heart damage they take a scan to check how well the heart is functioning. An echocardiogram uses sound waves to take detailed pictures of the heart as it pumps blood. I didn’t feel anything and no radiation is involved for this test. I layed on my side whilst the nurse moved a device over my chest, ribs and neck. She said that everything looked normal which was good to hear! They will continue to take regular scans of my heart throughout the treatment to detect any sign of heart damage.

My first Herceptin injection and radiotherapy appointment is on 8th December. I need to have 19 radio sessions all together, 15 to the whole breast area and four booster ones to the tumour/scar site. I do get Christmas Day off and a couple of days afterwards so a breather from going back and forwards to the hospital. It’s not quite the Christmas I had imagined, but hey ho I will make the best of it!

I’ve heard mixed stories from ladies who have had radiotherapy, some have not felt many side effects, some have been severely fatigued and also suffered bad burning.  I’d be lying if I said I wasn’t nervous about being nuked, but I sincerely hope it will be as kind to me as possible.

How I felt losing my hair

For most people (except for my gorgeous hubby!) hair is such a fundamental part of our personality, it affects how we feel about ourselves, how we’re able to go about our daily lives and how we present ourselves to the world. Having a full head of healthy, beautiful hair can be an expression of individuality, a symbol of fertility and makes us feel more attractive and confident. Of course, we take all of this for granted, until there comes a time when it is taken away.

Losing your hair is difficult for anyone of any age or gender, but as a woman I have found it extremely hard – it’s part of who I am, how I present myself to the world and to me, it’s what makes me feel feminine.

Hair loss is much more than just a visual and cosmetic problem as I was soon to find out – it affects people emotionally too. Compared to those unaffected, people who struggle with hair loss have a more negative body image and are less able to cope with daily functioning. Hair loss can also be associated with low self-esteem, depression, introversion, and feelings of unattractiveness.

IMG_1098I had tried as hard as I could to mentally prepare myself for losing my hair, but in reality nothing can really prepare you for how it feels when it starts to come out. Two weeks after I’d had my first chemo treatment my scalp started to feel a little tingly and a bit itchy. In the days that followed, I noticed quite a few strands coming out and then almost a week after when I washed my hair, absolutely loads started to come out.

I burst into tears and couldn’t stop crying. I wanted to be as strong and as positive as I could be trying to deal with this whole experience, but I think when I started to lose my hair all the feelings and emotions I’d had inside about having cancer all came bubbling up to the surface and out like molten lava from a volcano. I became even more aware of my situation and started to deal with the emotions perhaps I had been previously more numb to. I felt like I was grieving for my hair, and grieving for the person I used to be. The reality of the start of this process was much harder than I ever imagined.

As silly as it sounds, having lived with having cancer and all it has encompassed and its low points for over 5 months of this year , I think it really hit me that I was officially a cancer patient – soon to be balding – no disguising the fact now. I felt down at the bottom low.

Right now as I write this it is a gloriously sunny day and I feel down right miserable. I love being outside in the sun and I can’t even do that due to photosensitivity from the chemo. My hair is falling out and very soon I know I’m going to look like the a typical ‘cancer victim’. I’m supposed to be going out today to a friend’s house for a birthday gathering and all I want to do is stay at home and not go anywhere or see anyone. I know this is not healthy for me as I need to have the courage to go out into the world and face people, and I’ll have to do it without any hair very soon, but it’s the way I feel today. Why did cancer pick me? What did I really do to deserve this sh1t?! Well I know that’s a damn stupid question because nobody in this world deserves to have cancer, it’s just sh1t bad luck. If by me having it I can reduce the statistical chance of my husband, one of my family or my friends having it then I’ll take it for the team. It still sucks.

I’m completely infatuated with other people’s hair. I look at my friends who have lovely long flowing locks, and look people in the street and on TV who all have amazing hair and I’m insanely jealous. I will never complain about having a bad hair day ever again. In fact, I won’t be complaining about a lot of minor and unimportant things in life again.

As the days turned into weeks, more and more hair continued to come out. There would be hair on my pillow, it would collect around my shoulders and even just by touching it, it would come away in my hands. The whole experience takes you right down to zero and it really rocked me to the core psychologically. I didn’t want to see people and I didn’t want people to see me either.

I stopped washing my hair so frequently – each hair wash was a form of torture – a bit more of me washing down the plughole. It magnified and intensified everything and brought all sorts of emotions to the fore. I’d psych myself up each time I washed my hair, telling myself that I could do this, that it was okay and that I would be alright. I’d take a long deep breath before looking in the mirror and would be scared of who was going to be looking back at me.

It may have been easier if I’d just shaved my head, I know other ladies have found this to be helpful – to ‘take back control’. I’d have to plan it strategically as I certainly didn’t feel like drinking alcohol for about 2 weeks after my chemo treatment, and I definitely wasn’t going to be shaving my head without the aid of a glass of wine for dutch courage! But I just didn’t have the balls to do it. I also thought I’d try getting my hair cut in a ‘pixie’ style, I felt all brave and empowered one day when I booked the appointment, but then I chickened out at the last minute, I just wasn’t ready yet.

Everyone says to you ‘it’s only temporary, it’ll grow back’, but that doesn’t really help when it’s actually happening, when it’s your world and it’s all too consuming. I can’t really imagine that far ahead into the future at the moment, when I’ll have hair that resembles something normal, or near to how it was – I’m just taking each day as it comes.

Thanks to my dear friend Lou and the kindness and generosity of my amazing friends, family and work colleagues I have been able to get two wigs. One is synthetic and a darker shorter style and the other a longer, blonder, real human hair wig.

The first time I wore the synthetic one out of the house I needed my husband to come with me. It felt so odd to be outside the house wearing it, it was unreal. But the comfort and support of walking next to Pats made it a lot easier to bear. The first time I wore the human hair wig out I was by myself. Check me out! It was an unbelievably scary experience – I felt so vulnerable and exposed.

For that first trip out in my human hair wig I actually wore it to the opticians. Brilliant, pick a place where you need to get up really close in front of someone why don’t you Allie?! As I walked up the crowded street to the opticians, I literally felt like I had one of those big lottery hands pointing down at me or a big neon light above my head with “She’s wearing a wig!” emblazoned on it. Although of course I have no doubt whatsoever that nobody batted an eye lid that day.

I got into the shop and sat waiting for my appointment, tapping away on my phone trying not to make eye contact with anybody. I was called into the eye testing room by a young chap, and the  whole time I was thinking, he knows I’m wearing a wig, what on earth must he be thinking. I felt so silly – it’s like being a pubescent teenager again with all the worries and hang ups you have about your body.

Through the powers of twitter I recently came across a young lady called Nalie Augustin. If you are someone who is facing the prospect of losing your hair or who already has, or who is just having a tough time in your cancer treatment I’d thoroughly recommend listening to her TEDTalk. I found her so inspiring and it’s hard not to be uplifted by her spirit, courage and outlook. She also created a hair dairy showing her hair growth every week for 22 weeks following her last chemo treatment – it’s amazing to see.

The more light hearted side of the hair situation is that I now get to choose which persona I want to be each day when I put my wig on! I really feel the need to name my wigs, but am yet to do so – I would love to know your thoughts?!

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What the FEC?!

On the day of my first chemotherapy treatment I awoke early with a feeling of dread, fear and huge anxiety. I’d laid awake for ages with a million thoughts whizzing around my head replaying over and over again. Finally Pats woke up too and I couldn’t hide my fearfulness – he comforted me as I lay in his arms sobbing away at the thought of what was in store for me.

Having spent a lot of time at home over the last few months, I hadn’t been out shopping very much and have taken to ordering things online and having them delivered to home. Consequently, I’ve now become quite friendly and am on first name terms with my local courier – the lovely Jan. I hadn’t mentioned anything to her at all about my illness – she must have just thought I had a penchant for online shopping! Well that day she’d stopped by to deliver a parcel “Have you been away on holiday? I’m always happy to go away for a week, but any more than that and I want to come home”, she said. “Yes, we’ve been away. I really didn’t want to come home though – I’m starting my first chemotherapy treatment today”, I said and then immediately burst into tears. I felt so sorry for her, going about her daily business and there was me in a complete soggy mess on the doorstep!

Pats had been nipped out to get some bits from the shops and when he came home, he presented me with a gorgeous bunch of flowers and a nice new vase to put them in. Thanks to Pats, my family, friends and work colleagues, ever since my diagnosis in April I have had the pleasure of having a continual supply of beautiful fresh flowers in our house – it’s been so lovely and they certainly do lift my spirits.

I’d already got my bag organised to take to the hospital the day before. I had drinks, snacks, a magazine, two books (I’m not sure how long I thought we were going to be there!), my iPod and my Macmillan chemotherapy organiser.

imageWe arrived at the day unit at the hospital and I was given a name band to put on my wrist (you’re effectively an out-patient for the time you’re there). The nurse called my name and as we walked over to the unit I told the nurse that it was my first time and that I was very nervous.  They could see that I was upset so tried to allocate me one of the separate treatment rooms rather than being sat in the larger open plan area, but there were none available. The nurses were absolutely amazing, they explained everything that was going to happen and were very reassuring.

The other patients and their companions were all really lovely too. There was an older lady to my left who was there with her husband. She had clearly been through a lot of treatment in her life, but both she and her husband had a very upbeat and positive attitude and her husband was cracking jokes – they really were a very cute and endearing couple.

My nurse explained that she would run some anti-sickness drugs through IV into my PICC line to begin with. Then she laid out the bags of chemotherapy drugs out on her pedestal trolley whilst carefully checking my details against each one. FEC is the name of the chemo infusion given for breast cancer. Fluorouracil (also called 5FU), Epirubicin (also known as the red devil) and Cyclophosphamide. Some of the patients had their chemo drugs in bags that were hooked up on the machine that you’re attached to. Mine came in big syringes that were then plugged into the machine – except the Epirubicin which has to be injected very slowly and manually into the PICC line by the nurse. It felt very surreal seeing the drugs being pumped into the tubes into my body. Well here goes then, there’s no turning back now.

The nurse flushed through my line after the Epirubicin and then continued with the remainder of the syringes until they were all empty and inside me, being pumped around my body. A lady I connected with on one of the cancer support forums said I should try and visualize my body as a garden and the chemo going in is going to kill all the nasty weeds that are pushing the flowers away. They warned me that the Epirubicin would make my pee red – I’d already experienced the blue pee so was getting used to having multi-coloured bodily fluids by now! It took just under three hours and then we were all done. The first one was in and doing it’s thang. We got home and I laid on the sofa as I felt rather exhausted by the whole day’s events.

I had a bagful of anti-sickness and steroid tablets to take at specific times – I made myself a check list of each one and when to take so I could tick off and know what I’d taken and when. I woke up in the early hours of the morning in a night sweat and started to panic that there was something wrong. I took my temperature and all was fine so managed to get back to sleep. I felt quite nauseous for the rest of that week and I couldn’t eat a normal sized meal as it made me feel queasy. I felt tired too and would take a little nap in the afternoon.

They said at the hospital that a pattern would develop with each treatment but I’ve found each one to be slightly different so far. The first one I felt very queasy and couldn’t eat full meals, the second one I was physically sick and lots of my hair started to come out (separate blog coming on that topic alone!). The third one I felt much more tired than the previous two, and the fourth one floored me and really wiped me out.

The day before each of my chemo treatments, I have to go to the hospital to give blood and check that my immune system is strong enough to withstand the next dose of chemotherapy and also see the Oncologist. Most people’s immune systems are around the 5-8 level. In order for chemotherapy to go ahead, the results have to measure 1.0 or higher. The last two occasions mine have been 0.9 so I have had to have my bloods taken again. The hospital are supposed to call and let you know that your bloods are low so that you can go back in for a re-test.

The first time this happened I didn’t know until we’d got to the hospital ready for my chemo appointment at 3pm. This was the day my Mum and Dad had taken me to the hospital for treatment and they already had plans that evening to go out. We had to wait over 2 hours for the blood results to come back and luckily they’d gone up to 1.1 so treatment could proceed. This completely brings it home that chemo is a serious medicine and I’m actually not as well as I think I am sometimes. My dear Dad completely believes he’s jinxed by good old sod’s law, and on this day he was probably right to think so. My treatment then began at 5.30pm and so I wasn’t finished until 7.15pm. A quick pit stop pick up by Pats and we were home by 7.30pm.

Whilst I’ve coped better so far than I initially thought I would on chemo, it’s certainly no walk in the park. I’ve experienced a range of side effects throughout my treatments:

  • Queasiness/nausea
  • Tiredness/lethargy
  • Sickness
  • Teary, sad days
  • Insomnia
  • Fatigue
  • Hair loss
  • Mood swings
  • Watery/gunky eyes
  • Constipation
  • Headaches
  • Diarrhoea
  • Memory loss/chemo brain
  • Tired/achy legs
  • Heart burn

When I catch myself in the mirror I wonder who this person is who stares back at me now. Just over two months ago I had long blonde hair, my skin was slightly tanned from our holiday and I looked reasonably fit and healthy – I felt healthy – and definitely much more confident. Now my nails are going yellow and flaking off and when I look in the mirror I see an ugly, ill, fat, balding, tired old lady staring back at me.

WTFblog3bAs well as the physical side effects, I’ve found it has affected me psychologically and emotionally as well. I have up and down days – they’re mainly up thankfully – but the down days are debilitating. Days where I’ve wanted to hide away from the world – to not see anyone and not let anyone see me. Days where I’ve sobbed and it’s all been too much. I’ve had duvet/sofa days when I feel like I can’t do anything and need to rest.

There is a sense of being on autopilot a lot of the time as I go through treatment as there is a structure with all the appointments. I try not to expect too much of myself and am just taking one day at a time. I don’t know if it’s “chemo brain” but I don’t seem to be able to concentrate for long periods of time and I write myself a little to do list, even if it’s something really simple – a) so I don’t forget and b) so I feel like I’ve achieved something.

I have days when I wonder how this story is going to really pan out and I worry. A lot. I worry about whether it will come back. Will it metastasize? Will stopping Tamoxifen to try for a child make the cancer come back? If I did manage to get pregnant (and that’s a big if) will all the hormones running around my body make it come back? Would I ultimately leave my child motherless and my husband a widowed single parent? It’s the more prominent thought that gets played around in my head at the moment, rather than we’re going to skip off happily into the sunset with our beautiful baby. Then I try and stop that chain of thought. Replace the worries with positive thoughts. One lovely lady I met recently, told me that in a years’ time I’d look back on all of this as a very bad dream/nightmare and that actually positive things will come about from the experience.

I spend an inordinate amount of time reading – mostly blogs, twitter and articles on the web about breast cancer. I’ve found a great deal of comfort from the all the contacts I’ve made with the lovely ladies who read my blog and from connections I’ve made on twitter. Even though we don’t see each other face-to-face, it feels like a good support network. These are women who are going through the same thing, experiencing the same treatment, who are wearing the same t-shirt and know exactly what it feels like to be sat where I am now.

Having cancer and going through treatment is very hard psychologically. There is the fear that comes from being brought closer to your own mortality and the very real and terrifying prospect that the cancer might return. I try to have a positive mind set in respect of whether it’s going to come back or not. I am educating myself to look out for the signs of a recurrence. That’s not thinking negatively, but knowledge is power. I’ve found that unless someone has been diagnosed with cancer themselves, it’s hard for others to really understand the real torment of this fear. But I must have faith in the treatment that I’m having and try my hardest to not let it take over my brain. Sometimes you just have to dig a little deeper, fight a little harder and trust in the journey.

What I do know is that I have the most tremendous love, kindness and unwavering support from my totally amazing hubby, my wonderfully loving and caring family and friends and employers who continue to be generous and completely supportive – all things I am truly grateful for.

Time seems to be ticking by at quite a rate now – I’m actually surprised (and relieved) at how quickly it’s going. I’m now well over half way through my treatment and can start to see the end point of this obstacle course in sight.

One thing is for sure…… cancer? You can c*ck off!

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Image fabulously created by Julia B at Breast Cancer Chat WW @bccww Tuesday night’s 9-10pm GMT(BST), #support #networking. Everyone welcome: Use #BCCWW to join the conversation.

Hello Pixie PICC line

No sooner had I waved goodbye to the joyous time we’d had at the BBQ the day before, the next morning arrived and it was time to have my PICC line fitted. A peripherally inserted central catheter is a long, thin, hollow tube that goes into a vein above the bend of the elbow and stays in place until treatment is complete. Chemotherapy infusions, antibiotics and intravenous fluids are given through it and blood samples for tests are also taken from it.

My Oncologist recommended I have a PICC line as the FEC chemotherapy drugs I would be having can damage veins and become very painful. I don’t have a problem with needles or injections, but I figured I’d rather put up with having the line in all the time than having to deal with any more distress or discomfort than was necessary.

My Mum and Dad kindly took me to the hospital that day for the appointment. I was slightly tired, and in all honesty, a little hungover from overindulging the day before. It was like the last supper for me. After everyone had finally left ours, Pats and I stayed up drinking a mojito or two and spent our last “chemo-free” evening together laughing, being silly and dancing around the kitchen. On reflection, come the following morning when I felt slightly fuzzy, I didn’t think it was one of my better ideas to have that last mojito, but what we heck, we enjoyed it right up to the end!

I didn’t want to go into the hospital room by myself to have it done so I asked the nurse if my Mum could come in with me. Yes, I’m approaching 40 years old but still need my dear Mum!  This was the first time she’d been with me at any of my hospital appointments, so whilst I was really glad she was there, I worried about how she’d feel being exposed to everything that I’d already had a period of  time to adjust to.

There were three nurses in the room and they explained the procedure and what was going to happen and also went through the potential risks. I signed the consent form and got on to the hospital bed and laid there like a rigid stiff board! I was given a local anaesthetic to numb the area on my arm before they started.

I didn’t realise at the beginning of the appointment that the lady who was going to put my line in was actually being supervised by the other nurse. I started to feel really nervous – I know they need to learn by practicing on people but it made me feel so anxious as she was explaining what to do! There was an amazing nurse there called Sarah, she had blonde hair which was plaited in two pig tails and she sat chatting away to me to distract me from what was going on.

When I have donated blood or had injections, I’m not really keen on seeing the needle go in or look at what’s going on, so I turned my head to the opposite side and focused on Sarah. She said I looked terrified (no sh1t!) and tried to relax me. As I looked at my Mum’s worried face I then started to feel really bad for asking her to come in with me. From where she was stood, she had a bird’s eye view of what they were doing. This couldn’t have been very nice for her and not exactly what you want to see happening to your daughter.

They moved an ultrasound over my arm (it had to be done on my right arm due to having had surgery on the left) so they could find the best vein to use. I could see on the machine to my left an image of what the vein looked like (an oblong shape on the screen!). Apparently it wasn’t that long ago, before they had the technology at the hospital, that they used to perform this without the ultrasound which absolutely amazed me. It meant that a doctor had to carry out the procedure whereas now the specialist trained nurses were able to do it.

PICC-line

They basically put a needle into the vein and the PICC line is then threaded through the needle, into a large vein that leads to the heart. I didn’t feel any pain at all, I could just feel a little tugging and prodding sensation. I think the thought of what was happening was worse than it actually was!

My Mum put her hand on me to comfort me, whilst I gripped onto Sarah’s hand tightly as they gently threaded the line along the vein in my arm until it was in place. When it was all done, I looked down to see this wire protruding from my arm. It felt really weird and very alien-like. Well this is going to me for the next few months then! I’m not allowed to get the line wet or submerse my arm in water and the nurses explained that I’d be able to get a plastic arm protector to use in the shower. Lovely!

The PICC line is covered by a dressing which needs to be changed every week. When the line isn’t being used, there is a slight risk of it becoming blocked. To prevent this from happening, I would need the line flushed with a small amount of fluid using a syringe. I’d have to go to the hospital each week to have this done or they can teach your partner/carer to do the flushing/re-dressing over two training sessions. Although Pats had already said he’d wanted to do this for me, whilst I didn’t relish having to go back to the hospital every week, I felt it would be one thing less he’d have to worry about so I said I’d prefer to go to the hospital.

We located my Dad, who had been patiently sitting in the waiting room and went up for a chest x-ray. They confirmed that the line was successfully in the correct position and we were free to go. There we were in the middle of summer and I now had a constant bandage around my arm, completing the cancer look nicely.

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After getting the funny shaped plastic covering from the chemist to use in the shower, I decidedly instantly that I wasn’t going to use it. It’s actually meant for people with a plaster cast and I didn’t trust it fully to not get my arm wet in the shower. So baths in the morning is now how my routine goes, waving “Pixie” and my right hand in the air so as not to get it wet. Oh how I long to be able to completely submerge myself in a deep vat of water or stand in a shower and feel the water sprinkling all over me.

The big countdown…waiting for chemo to start

Having successfully gained the all clear from the re-excision surgery, Pats and I were determined to get away on holiday before my chemotherapy was due to start. Our gorgeous friend, Kate, managed to find us a holiday and we jetted off for a week in the sunshine. It was so lovely to escape from everything – no hospitals, no appointments and I actually felt ‘normal’ again for a week. I really didn’t want to come home from that holiday as I knew what was in store for me when I got back.

When we got home a letter had already arrived in the post with the scheduled dates to have my PICC line fitted and when the first chemotherapy treatment would start. Crash bang wallop – right back down to reality with a big bump. I felt very tearful after reading that letter – you know it’s all going to happen but at some points things just seem more real than others.

The time in between getting back from holiday and waiting for the first chemo session was so weird. As well as feeling really anxious and apprehensive about what was in store for me, I felt like I needed to have a final get together with my friends and family. It was almost like I needed to have a chance to say goodbye to the old me as I really didn’t know who I was going to become in the coming months.

Luckily my best friend, Tara, was home from Scotland for a couple of weeks and we were able to spend some quality time together. It was such great timing and the best medicine. She has been one of many who have been there for me throughout all of this. She has been so supportive, always sending me thoughtful cards with encouraging words and texting me before and after I had appointments to make sure I am okay. We don’t get to see each other often at all, so it was even more amazing to be able to spend time in person with her at such a stressful time. I’d begun the hunt for a wig and she came along to countless wig fittings with me, supporting me, making me laugh and generally making me feel better about myself.

We had a bit of a girly get together at my lovely friend Katherine’s house one evening and it was so nice to see all the girls and catch up with them.

I also had my hair cut short into a bob to help prepare me for the impending hair loss. My super sweet friend, Lou, had organised with our hairdresser, the lovely Natalie, to go to her salon (which she had closed especially for the evening) and said I could have anything done to my hair I wanted at no charge. She is so, so kind. Before going to the hairdressers we had a little ‘dutch courage’ in the pub (which was massively needed and a great help!). It was there that Lou told me how she had been fundraising for me at work and with my friends and family to get some money together so I could buy whichever wig I wanted and not have to worry about how much it would cost. I was absolutely moved to tears, not only by her kindness to do such a thing for me, but also for the generosity of my friends, family and colleagues. I was feeling the love big time!

Along with my other beautiful friend Claire, who had presented me with a gorgeous bouquet of sunflowers that evening, we ventured off to Natalie’s salon for the ‘big chop’. As we sipped on some bubbly, I sat in the chair in front of the mirror looking at myself. For all the years I’ve been going to Natalie to have my hair done, whenever she asks ‘what are we doing today then Allie?’, unsurprisingly to her I always reply ‘oooh, just a smidgen off the ends please Natalie and the usual colour’.  Well  holy cow, today was completely different not only for me but for her too!

As suggested by Tara, Natalie cut a lock of my hair off so I could keep it to use when looking to match it to a wig. I wanted to donate my hair to charity so she put my hair in a ponytail and plaited it and after tying it with a hair band – she cut it off! Oh my god…..wowsers!

Except for one occasion when I was about 12 and had my hair cut really short, I’ve always, always had long, shoulder length hair, and have never really like tying it up or away from my face. Now I had a bob… and a neck which you could see!

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It actually felt quite liberating in a way. Natalie blow dried it and made it look amazing. She was so kind to donate her time and she wouldn’t accept any money from me. As we left the salon I couldn’t help swishing my hair about, I felt like a lady in one of those hair adverts and Lou, Claire and I walked along singing “It’s like you just stepped out of a salon.. Salon Selectives” (only the slightly older readers will remember Salon Selectives hair products!).

We went to a birthday BBQ on the Saturday and had a lovely time catching up with friends and on the Sunday we hosted a BBQ at our house with my parents, my sis, Tara and two of her gorgeous children. It had been quite a whirlwind and hectic week but it was just the best getting to catch up with all my nearest and dearest.

By the time I’d come down from the high of seeing everyone, once again back to earth again with a bump knowing that on Tuesday I would be having my first chemo treatment. I felt very mixed feelings waiting to start chemo, I wanted to get it over and done with so it’s done its thing, but equally I didn’t want it start as I just didn’t know what will be in store. I was absolutely petrified of how I was going to feel, what was going to happen to me, how I was going to look and what sort of person I was going to turn into.