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.

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

On 14^thOctober, 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.

We 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.”

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.

 

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.

I 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?!

  

Chemotherapy and scalp cooling – to cap or not to cap: that is the question

My first chemotherapy cycle is due to start in a few weeks’ time and I still can’t decide whether to try the cold cap to try and prevent losing my hair.  The prospect of any woman losing her hair is certainly very frightening – another giant signpost of this dastardly disease.

I have been in touch with some lovely ladies who have tried the cap and it has been successful for them and with those who decided not to.

I had reservations before I met my oncologist as to the safety of using a cold cap as I’d heard that by using it the scalp wouldn’t be protected if the cancer cells were to spread to this area (metastasis). Metastatic breast cancer is cancer that has spread from the breast to another part of the body or has come back in another distant location.

I raised my concerns with my oncologist and he said they simply wouldn’t recommend using the cold cap if it would cause the patient any harm.  He handed me some printed information from Macmillan on scalp cooling to read. In it there is a section titled “Concerns about scalp cooling” where it says:

“Some doctors worry about using scalp cooling with treatment that aims to cure the cancer. They are concerned that cancer cells that may have spread to the scalp may be more likely to survive chemotherapy if scalp cooling is used. However, cancer spreading to the scalp is very uncommon. Clinical trials have shown that the risk of this occurring as a result of scalp cooling is very small, except in haematological cancers. Some people may prefer not to have scalp cooling because of this, but others are happy to try it.”

He put me down to try it. Whilst chatting to my breast care nurse I also voiced my concerns again, and she echoed the same sentiment of my oncologist, they wouldn’t recommend or use it if it were to put the patient at risk.

I’d also been in touch with another lady who is currently undergoing chemotherapy and who has successfully used the cold cap. Now on her fourth cycle of treatment she has kept her hair and is pleased with the result.

I really don’t want to lose my hair. I think that’s a given for any women diagnosed with cancer. I have shoulder length hair and if I have more than an inch cut off at the hairdressers I feel like I’ve been scalped. I hate to wear my hair up, I feel exposed, and it’s nice to “hide” behind if that makes sense. However for the sake of keeping my hair, that will ultimately grow back, do I take this very minuscule risk?! Of course, the cold cap doesn’t work for everyone, so I may end up losing my hair anyway.

I decided to call the breast cancer care helpline (0808 800 6000) to ask what their thoughts were. The lady explained that evidence suggests that it is safe for people with breast cancer to use and that the risk is only for people who have a haematological cancer such as leukaemia. She also pointed me to an article that ASCO (the American Society of Clinical Oncology) had recently published in which she said that this risk was understood to be the case 30 years ago, however they understand the biology of cancer far better today.

The article reads: “We understand a lot more about the biology of cancer and metastatic disease now; it turns out that the risk of metastases to the scalp is extremely low, and as a first event for advanced disease, it is even lower. Mostly, scalp metatases are seen after people have already had metastases to other places in the body, and in total, only about 1.2% of all metastases are found in the scalp.

Scalp metastasis would have to be the first site of metastatic disease to postulate that is has anything to do with scalp cooling, and that is very uncommon in the studies that are available. I’ve reviewed over 4,000 patients reported in clinical trials, and it is just exceedingly rare and doesn’t seem to be any higher in risk, from what we can tell, in patients who are using the cold cap.”

The lady on the helpline said it really was down to personal choice. I need to do what is best for me, what sits most comfortably in my mind and will give me the least amount of worry.

More choices, and more difficult decisions. I’m a natural born worrier and not the most of decisive of people let’s say! I have a few more weeks yet to decide. I’m just wondering if anyone else has been in this quandary and what helped you to decide?