Breast cancer awareness month: Chemo Brain

Author: Jackie 

If you’ve ever had, or been around anyone who’s had, a touch of the Pregnancy Brain or its natural rite of passage: New Baby Mush, then you are on the way to understanding the effects of Chemo Brain. Just magnify the lack of cognitive skills, difficulty in concentrating beyond the fourth word in any sentence and lack of recall for anything which happened say, over ten seconds ago, and you start to get the picture.

Experts aren’t sure what causes Chemo Brain, or if it’s even the chemotherapy itself, or simply the having cancer and any treatments for it, but it is recognised as a debilitating side-effect seen in cancer patients. There’s a good article about it on the Cancer Research UK website here: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brain

I’m not your archetypal control freak. I yearn for those moments where I can take a back seat because somebody else has taken the reins. But I do like a certain control in my personal and working life. The moment my to-do list gets a little messy, it ramps up the stress levels. Chemo Brain certainly added a layer of stress to my life and I think that if you asked my children what the worst aspect of my treatment was, they’d say it was having a Mum who was away with the fairies. I couldn’t retain even the most simple of information – from whether I’d brought in the milk to where my children were.

And one of the most stressful things was, wait for it, the washing. Oh yes, when you can’t remember your teenage daughters having a pair of black skinny jeans to die for, let alone whether they were dry (or even if you’d washed them) and the party for which they must be worn was a few sweet hours away, it’s depressing. I was used to being on top of such matters, and being on top of those meant that I could concentrate on arguably more important matters, such as work. In truth, every time my children flashed me that look of disappointment that I’d forgotten something, anything, again, it sort of broke my heart a little bit more. Maybe it was intertwined with being a mother and having cancer treatment because when you have children (or a partner, friends or family), it makes you feel like you are a bad mother (or wife, friend, daughter or sister) sometimes. 

But please don’t despair. It gets better.

Almost the moment the other side-effects of chemo disappeared a couple of weeks after my final dose, I felt the fog lift a little, too. It would be wrong of me to pretend that I’m back to the old – skinny jeans you say? What colour? The black ones are in the machine as we speak, green ones are drying on the airer (I’d say two hours forty seven minutes and they’ll be dry as a bone) and the grey ones, sorry, still in the washing bag, we could spray them with Febreze? – ‘all-over-it’ mum. Cancer seems to lodge a lump of goo in your brain as its final (we hope) hoorah when it leaves. It’s a store for The Cancer Fear to be dissipated around the body whenever you cough, get a spot or have stiff legs, and dust an annoying layer of fuzziness over all other thoughts at other times. I’m afraid hormone treatments, such as Tamoxifen don’t help either. Nor does a chemically-induced, premature menopause.

But none of that, categorically none, is a patch on Chemo Brain.

My advice? Be kind to yourself. It isn’t a failing; it’s a side-effect. It isn’t forever and life will feel oh so much better when it’s gone. There are strategies to help. Keep lists, lots of lists, and keep them by you at all times so that you don’t forget where you’ve put the list (!) Keep healthy too: the endorphins you release when you exercise are proven to improve cognitive skills and I certainly write better after a run. And water. I swear water cleans your brain. No scientific papers will back me up on this but I’ve experienced it myself regularly, so it must be true. Too much tea? The fog in my head is so heavy I can practically feel the weight. Glass of water? Instantly lighter. Try it, seriously, I think water is the ultimate medicine. And educate those around you. I think my children, even as teenagers, were too young to really understand what I meant when I said that I couldn’t remember. It was beyond their comprehension and life experience to imagine how this could be. But friends and family will understand and they’ll make allowances and even send you helpful text messages just to make sure you know where you’re supposed to be.

Hang on in there! Chemo Brain isn’t as soft and cuddly as it sounds but it also isn’t for ever. 
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Jackie blogs at:

Agenthood and Submissionville http://jackiebuxton.blogspot.com

And Jackie also has a book out soon which is available now to pre order, called Tea and Chemo: Fighting cancer, living life

https://urbanepublications.com/books/tea-and-chemo-fighting-cancer-living-life/ 

http://www.amazon.co.uk/Tea-Chemo-Fighting-Cancer-Living/dp/1910692395

 
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Breast cancer awareness month: A Moon Transiting Through Cancer (part 2 of 2)

Author: A Moon
Allie also writes at: https://alliemoonjourney.wordpress.com/

Cancer Fog 

The usual me, although a little ditsy at times, is usually a very together person – organised, driven, determined, detail-focused and on top of things. From the point of being diagnosed, a piece of that person has disappeared a little. I’m unable to take in or store lots of information – I have to have things explained to me more than once, and even then it stays there only temporarily. It could be down to “chemo brain”, but as I had it from the point of diagnosis I suspect not. I’m only able to pick up on certain things or key words as my mind is generally filled with 101 different questions at any point in time about varying things and worries to do with cancer and treatment.

Chemotherapy and Hair Loss 

The way chemotherapy is portrayed in the media does not always accurately reflect how it is in reality. Whilst I know many people face a terrible experience of it, I really thought I’d be completely bed-ridden or have my head down the loo being constantly sick all the time. Whilst I am coping with the chemotherapy treatments better than I’d imagined I have found it very tough emotionally and psychologically. Out of the side effects I’ve had, the worst has been losing my hair. This is a difficult process for anyone of any age or gender, but particularly more so for women. My hair is a part of who I am, how I present myself to world and what makes me feel feminine. When it started to come out I wanted to hide away from the world, I didn’t want to go anywhere or see anyone and didn’t want them to see me. Hair loss can have such a negative impact on your self-confidence and body image, leading to introversion, depression, feelings of unattractiveness and at times it's been hard to cope functioning normally on a day-to-day basis.

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. 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 previously been numb to. I felt like I was not only grieving for my hair, but also grieving for the person who 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 the low points it has encompassed over the last five months, 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.

Loving Kindness, Support, Positivity and Gratitude 

The path I've been walking over the last few months has been fraught with worry, fear, stress, pain, anxiety and sheer fright. But whilst the path has been a hard one to travel, it has shined a light on the many special, down right amazing and kind and caring people who I'm lucky to have in my life.

Without my husband by my side these last few months this would definitely have been an even more horrid experience. He has been my absolute rock and guardian angel – caring for me, holding me in his arms, comforting me in my darkest hours and holding my hand every step of the way. Whilst we had a very happy and strong relationship before I was diagnosed, I certainly feel it's brought us even closer together. My family and friends have also been amazing – no words can describe how grateful I am for the care, thought and support they’ve shown me. My employers have been incredibly supportive throughout all of this and I can’t thank them enough for their kindness and generosity. I feel truly blessed to have such kind, caring and supportive friends, family and colleagues.

A very dear friend moved me to tears when she surprised me with the fact that she’d been fundraising amongst my friends, family and work colleagues. This was so I could choose whichever wig I felt most comfortable wearing without having to worry about how much it would cost. Their very kind donations have enabled me to leave my house and try to brave the world in what is this ‘”new normal” for me. They’ve all helped in making the huge mountain I’m climbing that little bit easier, ultimately helping helped me stick two fingers up to this dastardly disease. As well as many of the more insignificant happenings of life that suck up our energy, I certainly won’t ever be complaining about bad hair days in the future!

I realise that I’m fortunate to not have had a worse diagnosis, and that is due to the fact that I found the lump early enough that it hadn’t spread elsewhere in my body. For everyone reading this blog, please, please make sure you regularly check your breasts so you know what normal feels like. If you feel something that is not right - don’t sit and wait on it – act now.





 

Breast cancer awareness month: A positive outcome

Author: Michaela


Everyone tells you to 'be positive' and' everything will be just fine'. I knew from the moment I found my lump that it wouldn't be fine; I think you just know.

But here's the thing, sometimes you do here a story about someone who got lucky when things could have been so much worse, and that is me. I hope my story can give someone in the early stages of this horrible journey some hope.

It was Mother's Day weekend and I'd been out with my mum and 2 sisters for ice cream and a weepy film. I got home to my husband baking cakes for me for Mother's Day and was told to wait in the lounge and DO NOT enter the kitchen! Love him! So I sat and caught up with the Facebook world. A work colleague who had recently finished her breast cancer treatment had posted something about checking your breasts. I NEVER check mine- because they are just lumpy and how could you possibly tell? I was horrified to find a very obvious lump which I cannot believe I hadn't noticed before.

The days that followed were just an emotional draining whirlwind. I was lucky to be seen by my GP and then the consultant within days. An ultrasound, core biopsy and mammogram were done and then an agonising 3 week wait for the results. In those 3 weeks I prepared myself for the worst. I was going to die and leave my two beautiful children without their Mum. My parents were going to lose their eldest daughter. Could my husband cope without me? Those 3 weeks of uncertainty were, without doubt, the worst 3 weeks of my life.

The results were as expected. I heard the words 'you have breast cancer' and the rest was a blur. What I didn't hear were the very positive comments that she made about how small the cancer looked, how the lymph nodes appeared to be clear. I had surgery 4 days later to have the lump removed and a sentinel node biopsy.

I felt devastated after the surgery. My lump was high up almost on my chest right on the edge of the breast. The scar I am left with is visible and if I'm honest, I hate it. I am not at a stage yet where I wear it as a battle scar to be proud of. Selfishly, I miss my nice shaped boobs and I miss being able to wear clothes to show them off. I don't think I will ever quite get over that part. Please don't judge me for that, I can't help it. I was most scared about having to have Chemo. I didn't want to lose my hair. I realise how pathetic and self aware I am, it's been a lesson in life that's for sure.

It's interesting how you learn so much about family and friendships at a time like this. I saw the pain in my husbands eyes and it made me understand how much he loved me. That had been something I'd doubted at times, but it was suddenly so real and clear. Seeing your Mum cry and say that she wishes she could have the Cancer instead of her little girl. That broke my heart- but I knew she meant every word. My Dad was a mess, he was so scared that he would lose me. And friends, interesting this. Some people you have been close to your whole life don't seem to know what to say, so they just don't say anything. That was very hard. Some friends, and work colleagues literally stopped speaking to me at all, instead talking about me to my husband. I know it's a hard thing to talk about, but from my experience, I know that I will always put my own awkwardness aside and make sure I speak to people. My family were amazing throughout; offering constant emotional support, practical help with childcare and cooking meals for us. A certain few friends now have an extra special place in my heart because of how they helped us through.

My results following surgery were as great as they could possibly be. A grade 2 cancer, only 18mm, all out with no spreading to the lymph nodes. The cancer was gone and best of all I did not need to have chemotherapy. Just 4 weeks of radiotherapy and 10 years of Tamoxifen. The radiotherapy was dull and a bit of a pain to get there every day but for me it was completely painless and I coped well throughout. Work were extremely flexible which helped too.

And here I am 5 months on, life seemingly back to normal, the nightmare of breast cancer hopefully a distant memory. Except it isn't for me, the reality is that I think about it every single day, that I am constantly scared I will get it again and not be so lucky next time. Everyone else around me has moved on and no one knows the mess my head is in. I've found I can't really talk to my husband about it as he always wanted to offer a solution, or tell me that I am being irrational. Which I know I am, but I just need someone to let me get the words out. I've decided to find out about some professional counselling, that way I can get the thoughts out of my head and friends and family can continue to move on and not feel I am being negative about my experience. I am awaiting the results of genetic testing now and hoping that a can of worms isn't opened from the results. Hopefully it is just me that randomly got this illness.

I know how very, very lucky I have been. Compared to many others I have literally had a brush from this terrible illness and have got away so lightly. Physically I am good, emotionally will take a bit more work! I want women to have hope that sometimes the outcome is ok, that if you find a lump early and act fast, the results are not always the worst.

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Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts

Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:

Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.

Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.

Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.

The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments

Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.
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