“Normal is an ideal. But it’s not reality. Reality is brutal, it’s beautiful, it’s every shade between black and white, and it’s magical. Yes, magical. Because every now and then, it turns nothing into something.”
― Tara Kelly, Harmonic Feedback.
I’m not sure about you, but it seems that over the last few months the big C just got a whole lot bigger!
Pre Corona, Cancer was the big C, except there was no R number and no one was wearing a face mask or socially distancing to avoid getting it! Had that been the case, I may have tried to avoid it a little harder, but as I learnt for myself, on three occasions, the only similarity between both of these big C’s is that in reality, each case and every patient are different and what we thought was normal, changes forever.
After having three breast cancer diagnosis spanning twelve years, from age 26, I have rehashed my own ‘new normals’ a few times! Each diagnosis, though all hormonal, required different treatments, surgeries and had different side effects. I’ve learnt so much about myself and cancer as a whole and I feel incredibly lucky to have had the team and the treatments I needed. The whole irony of what a different landscape we are living in now, is not lost on anyone who may have had medical treatment for a disease or illness in the past. As anyone who has been affected by cancer will be all too familiar with, a diagnosis will undoubtedly open a bottomless can of worms and that pin ball of ‘new normal’, will reverberate in your head, bouncing from corner to corner, undermining anything you thought familiar or safe.
In an interview with the national clinical director of cancer, Professor Peter Johnson, on BBC breakfast this morning, it was clear our NHS are doing everything to clear the backlog of delayed treatments and surgeries, trying to ‘put cancer services back together’ while also endeavouring to suppress the virus and follow guidelines. With new treatment options and cancer drugs that don’t suppress the immune system, as well as tweaking radiotherapy treatments so patients can have fewer doses, some will continue with little interruption but others may be left coping with an even tougher reality.
In an article posted by BBC news on 1st October 2020, aptly scheduled with the start of Breast Cancer Awareness month, Breast Cancer Now reported that almost one million women in the UK were calculated to have missed vital breast screening due to the Coronavirus pandemic. So it stands to reason that this October, we need to up the game and wave an even brighter and larger flag than ever! One such lady, Nicki Newman, who is one half of the Secondary Sisters (two friends who are changing perceptions of living with incurable breast cancer) has been raising awareness for secondary breast cancer and has been part of the #feelyourbreast campaign, collaborating with the brilliant Coppafeel and the leisure wear brand Lounge, to encourage women to self check. Nicki has gone one step further and made her own mini breast checking ‘Nick GIF’ On her instagram post from 7th August, she writes, ‘Its all well and good reading how to (check your tattas) but if you’ve not been shown you might not know the technique.
I hope these give you a little more confidence when giving those tats the love and attention they deserve each month.’ By demonstrating on her own half naked body, she has re framed breast cancer awareness into checking our ‘tattas’, taking the stigma out of touching ourselves, adding a whole heap of humour, and making this simple, yet life saving five minute ritual, normal! For anyone receiving a diagnosis or waiting for tests and results, the straight line of ‘normal’ becomes a rather curly-wurly tangled mess.
During the pandemic, more than 200,000 people were treated for cancer and one such lady, known here as Meg, was diagnosed in June after noticing that a lump she had been aware of, was growing at speed. She bravely went to her GP, who put her on a priority list, due to her age and family history. ‘Apart from the delay of getting a mammogram and getting the biopsy back, I felt extremely lucky, as everything moved so fast, I didn’t really get a chance to think about what was actually happening to me or what I was about to experience’ - Meg Breast Cancer Now currently estimates that a total of 986,000 women across the UK missed mammograms due to the pause in screening.
Typically, routine mammograms will diagnose approximately 19,000 breast cancers a year and in August there were only 170,000 referrals, which is far from ‘normal’ and I doubt any one of these women wants to be told, she wasn’t the only one! As it turns out, Meg was the first person in the UK to have a breast cancer mastectomy and reconstruction all in one since Covid, and she wasn’t sure if she felt scared or honoured! ‘My surgeons that morning looked at my body for the first time, drew on me and then I was alseep.
Eight hours later surgery was complete and my recovery journey began….My only big negative was that I had to decide on my reconstruction surgery very fast. To get me on the list we all had to move fast and make decisions quickly’ - Meg To be faced with this life changing news and have to make such a decision with little time for consideration, it seems there is no middle ground. With breast screening services resuming and large numbers of invitations finally being sent out to women across the country, October’s Breast Cancer Awareness month has now taken on an even greater focus of revising action plans and new resources needed to tackle the backlog of patients, and improving the level of early detection, not only by routine appointments but by educating women, promoting self checking, self awareness and continuing the conversation with an even louder voice.
I found the lump the first time. It was puckered and easy to see, but the second and third times, my consultant found them. This was only because I was having regular check ups. Despite having a double mastectomy and reconstruction and then having a hysterectomy and my ovaries removed a few years later, my normal is checking frequently because I know this is the most positive thing I can do for myself, as a survivor and a women.
After my second diagnosis, I set up a cancer survivor support group called SafeSpace, to help anyone adjusting to life again after cancer treatment, creating a platform for those of us navigating life with the myriad of far reaching side effects. Post treatment had been my most vulnerable times and after being diagnosed with PTSD and mild depression, the urgency of support and recognition of those trying to find their own new normal post cancer, was vital. During these recent months, many of the Safespace group have had to wait anxiously for check ups, ‘routine’ scans and counselling sessions, and some have watched as members of their families endure and wait for other diagnoses’s.
These are all heartbreaking triggers of the trauma and stress of an already unbearable situation. Social distancing measures have kept us safe from another unknown monster, while increasing our risk of fighting another. By stripping us of personal contact and adding challenging restrictions, things have felt anything but normal. I often say that ‘the support doesn’t end when the treatment does’. We must emphasise that support doesn’t just start when a diagnosis does.
The campaigns for breast cancer awareness and self checking, as well as the amazing blogs and social media accounts of other patients and survivors, is astounding, but we need to raise the bar and cast the net wider, to prevent any others slipping through the net! After losing a dear friend, who was one of the first members of my SafeSpace gang, to breast cancer at the end of lockdown, I have realised how brutal current realities can be, but it takes bravery to make it beautiful and courage to find the magic. If this year has taught us anything, it is that we ALL deserve to actively look after our emotional and physical health and if that becomes part of a ‘new normal’, nothing has certainly become something.