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.