PUBLISHED ON: 6 November 2018

Eve’s fingers numbed due to treatment, and for six months she struggled to go about her daily life. She shares how she coped, and how her breast care team made sure she got the care she needed.

Eve had breast cancer and is also blind.

I felt like cancer was waiting for me

I was diagnosed with breast cancer in November 2016. I went for my normal routine screening. I wasn’t worried about it, as I’d had two screenings before.

They called me back for another appointment to have some tests. When they started using a different machine I thought, ‘They didn’t do this last time.’

My husband was with me when they told us it was breast cancer. I already suspected it from the way that they were talking and acting during my ultrasound and biopsy.

I have retinoblastoma, which is a childhood eye cancer that has left me blind. The altered gene which caused my retinoblastoma can be linked to a higher risk of other types of cancer. So I had thought that cancer would turn up again at some point. It felt like it was hovering, waiting for me.

When they told me, I wasn’t surprised. My husband said, ‘We’re going to beat this.’

I had genetic testing

Less than a week after my recall appointment, I met with the surgeon discussing my treatment options. At first, they weren’t sure where to start, as I had a tumour on each side. They’d done genetic testing for the altered BRCA gene, which came back clear.

I had chemotherapy and a double mastectomy with a reconstruction. I had a goldilocks procedure, which takes excess skin and rebuilds breasts using that.

My blindness was never an issue

Everyone made sure that my blindness was considered at every step.

When I was diagnosed, I was given a printed list of the information that Breast Cancer Care provide. My husband spotted that they were available in Braille, so ordered them all for me.

Before I went into my mastectomy, I asked if I could be admitted the day before to get settled in and get to know the room that I would be staying in. This was no problem at all.

The surgeon came and read the surgical consent form to me himself and made sure that I knew where to sign on the form. The night after my surgery they wouldn’t let me go the bathroom by myself, and there was always someone on hand to help me.

It could have been an issue, but everyone was positive and helpful in managing it.

My numb fingers made it hard to ‘see’

I struggled with some of the side effects of my treatment. Chemotherapy made my asthma and migraines worse, and I felt quite sick. I was aware of other side effects like loss of taste and numb fingers, but I didn’t know how long they would last.

My fingers felt numb for six months after I’d finished treatment. This made it difficult to go about my daily life, as I use my fingers to ‘see’ what I’m doing.

I managed to read Braille OK, but if I was trying to read a new book I’d have to take breaks, because it was too rough for my fingers.

When I was trying to measure out liquids while cooking, I couldn’t feel how full something was. It was a difficult barrier for me to navigate.

I’m more aware of my body

I knew that I’d lose my hair. I didn’t want to have a cold cap or wear a wig, as they would make the migraines worse.

Being able to wear different scarves and hats when my hair was falling out really helped. I had a lot of fun putting together looks and ordering new ones from the internet. My hair ended up growing back curly, which I really enjoy. My grandson likes to play with it!

Because I don’t see myself, or what everybody else looks like, I struggle with my appearance. I don’t like others seeing photographs of me, because if I can’t see them, why should they see me?

I know I look OK as my husband has a good idea of colour and helps me pick out outfits to wear. Before my diagnosis, I had got to the point where I thought I looked good most of the time.

Now, as my breasts are smaller due to my treatment, I’m more aware of my body. I have the odd day when I feel unattractive, but if I tell my husband how I feel, he usually puts my mind to rest. 

I’m looking after my health

I’ve attended a Moving Forward course in Glasgow. The team sent me all the slides the presenters would be using so I could read them beforehand, which was immensely helpful.

I’ve also been trying to keep my health up by doing some more exercise and eating better. I like dancing in the kitchen because I can control the environment I’m in and know how long I can go for. I’ve also started looking at walking routes, though I’ll need someone to come with me.

Make sure you’re treated as a ‘whole’ person

From my experience, I think it’s important to remember to make sure that you’re treated as a ‘whole’ person when going through breast cancer.

If you have other conditions like I do, they don’t exist on their own – they’ll be affected by your treatments. Mention it to your breast care team so they can take it into account at every step of the way. It’s how you’ll get the best care for you.

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