Being Dense

There has been exciting news circulating this week in relation to Standardisation of Breast Density inform policies for women in the US.
Screening programs and centres that provide mammograms to screen for breast cancer will have to tell women whether they have dense breast tissue, which can increase the risk of cancer and mask tumors, the Food and Drug Administration announced in a proposed rule on Wednesday.

40% of women over 40 yrs have Dense Breasts and it is now widely acknowledged that Breast Density is an independent risk factor for Breast Cancer.
Mammographic breast density is one of the strongest independent risk factors for subsequent breast cancer, stronger than even age or family history. Having dense breast tissue not only increases one’s chances of developing breast cancer, but also makes cancers that do develop more difficult to detect on routine imaging.

In recent years global breast cancer advocates have campaigned for breast density inform protocols.

http://www.areyoudense.org

http://www.densebreast-info.org

http://www.informed.org.au

Many have been covered widely by the mainstream media.

In 2010, The Los Angeles Times said of breast density, “It just might be the greatest cancer risk you’ve never heard of.”

Breast Density is not just for Mums.

I had never heard of breast density. Friends of mine who had been diagnosed with breast cancer over the last 15 yrs had never heard about breast density. Women I worked with, they had never heard of it. Two friends, both oncology nurses, had never heard of it. It was a close friend of mine who brought it to my attention back in 2016 and I have been talking about it ever since.

I am a Mum, I am now a patient advocate. This is ‘the new me’.

Being Dense awareness evening

http://www.beingdense.com was started by me 3 years ago and ‘my new normal’ is driven by my desire to raise awareness of breast density, the relevance of supplemental ultrasound and MRI screening for women with dense breasts. This is for Irish women and it’s definitely ~ not just for Mums. #TellWomen

When I was diagnosed with breast cancer in 2015, like any other cancer patient, my world changed forever. At the time, I was working full time in a busy post primary school environment, I was an active, fit, otherwise healthy woman, a mother, friend and I had a busy full life going on. I have always loved sport and I was playing lots of tennis and golf in particular. I felt life had suddenly come to an abrupt halt.

I decided to embrace much of what was being said to me around the time of my diagnosis. “Yours is the best kind of breast cancer to get, there’s so much we can do now, it’ll be one shit year but then you’ll be ok. You’re a strong woman, you can do this”.

I imagined myself at a T-junction, turn left and I might die, turn right, take the treatment, surgery etc and after a year or so I’d be able to resume “all normal activities” and pick up my life again.

I knew I couldn’t go back so it had to be the right turn, I had to embrace what was coming, I really had no idea of what that was. I knew I had 8 fortnightly infusions of toxic, shitty Chemo. I focused on and visualised those 8 hurdles. I took my starting position and prepared as much as I could. A major regret now is that my Oncologist refused my request for a portacath. My veins subsequently collapsed on Chemo 3 and have never recovered. Access for simple blood tests and scan contrasts now has become hugely problematic. When a woman has to have an auxiliary node clearance, the veins on the affected side are totally compromised. I believe strongly that those women should have their Chemotherapy administered through a portacath in order to protect their veins in their ‘good arm’ unaffected by cancer and surgery.

2016 was a really shit year. There is no best kind of cancer. You are not ok after a year and there is no going back. I did not resume ‘all normal activities’.

The onset of Mothers Day this week has reminded me of 2016.

I have two amazing beautiful sons who made certain to be home for Mother’s day that year as I was in the middle of Chemotherapy and they were naturally upset and wanted to spend the day with me. I won’t go into my hazy recollection of detail but it was awful. I couldn’t cope. I felt weak and altogether a bit of a mess. They cooked a beautiful meal with my husband. I remember the smells from the kitchen worsened my feeling of nausea. I couldn’t eat, everything fell apart and I spent most of the afternoon and evening upset but unable to get it together. I hated them seeing me like that, I hated being so out of control. It was and still is a horrible reminder of breast cancer.

Chemotherapy left its mark in many ways, chronic fatigue, badly damaged veins, cognitive dysfunction, thinning short grey hair, inability to multitask and anxiety. Why does no one tell us about this Chemo brain and inability to cope with background, white noise.

Waiting 5 months for Mastectomy and auxiliary node clearance throughout chemo was so hard. My grief finally took over, it took a wonderful nurse – 3 days after surgery to put it into words – she hugged me and asked me if I felt violated. Oh my goodness ~ Yes, that was it, I did feel violated. I knew it was irrational, I knew that the mastectomy was necessary, I knew my surgeon had done a fantastic job.

My brain accepted that part of what had happened but my soul cried out, so loudly and I mourned for that part of my femininity that was lost to breast cancer forever. That nurse, hugged me like a mother and I felt like a child. Her motherly instinct and nursing experience took over and when she put her arms around me as I sat on the side of my hosp bed sobbing, with drains hanging out, I grieved for my own mother who died when I was 20.

That wonderful nurse and her intuitive, motherly words gave me the freedom to begin a grieving process and the search for the new me, ‘my new normal’.

Radiotherapy effects added to the scars and disfigurement, lymphoedema, nerve pain and again that crippling fatigue is at times overwhelming, but this is me, my new normal. For many months I convinced myself that I was ok, truthfully though, I wasn’t, I couldn’t even recognize myself in the mirror. It’s taken time but I like what I see again.

Breast cancer robs many of us of many things. We sometimes lose friends, I know I did and that hurt, I still miss them. I treasure new friendships that I’ve made too though. I have met a few very special women through breast cancer and the depth of emotional support and understanding between us has made a huge difference to my life.

We often have to give up our hobbies, sometimes cancer robs us of our careers. Nothing about life is certain but there is no feeling of certainty after breast cancer. I know I live with fairly constant fear that my breast cancer will return, it’s not always rational and it’s hard to control.

I look back over the 3 years since my diagnosis. I now see it as more of a crossroads than a T-junction. There is a clear way ahead. There was always a path ahead, it was obscured by fear and uncertainty and by my new vulnerabilities. Being a strong woman, I like being in control, fiercely independent, a good Mum, those were things I held dear, but now I was struggling to maintain those qualities. I had to learn and I now accept that it’s ok to be weak too.

I experience joy and happiness in ways I never thought possible before. Life moves at a slower pace, I have time to walk by the sea. I hear birds sing and I notice little things that I never could before. I think acceptance of my new vulnerabilities and my scars make me strong again. Maybe it’s true ~ what doesn’t kill you makes you stronger, for now at least, I feel strong. I now recognise that person looking back at me in the mirror, is the new me, my new normal.

If you feel you can please #TellWomen about http://www.beingdense.com and remember it’s not just for Mums.

Happy Mother’s Day 2019