Well I must be as I have been discharged.
“Get to know your new body so that you can keep a tab on any changes.”
So to put this into perspective, I had a diagnosis of invasive cancer across my breasts and subsequent mastectomies to remove said breasts. There is still a small chance of local and regional recurrence in my chest wall and surrounding tissues as well as an increased risk of me developing cancer in the future. And I never have another check-up or scan again.
It is standard procedure in the UK that from here on out, the cancer survivor is left to check for ‘lumps and bumps’ and if they are concerned then the process of breast care referral starts again. From the start. No fast tracking. Just to be clear, we are checking for lumps and bumps across an area of significant scar tissue that is by nature, lumpy and bumpy. So when I found another lump in my armpit six months post mastectomy, still trying to pick up the pieces of my fragmented mental health, I panicked.
I called my GP surgery and like the last time I found a lump, saw me within two hours. But the process of the next steps of scanning and investigation starts again. Step one. Literally. I am referred back to breast screening and have to wait another two weeks to be seen.
I didn’t even think to check my armpits. I have additional scarring here due to a lymph node biopsy procedure so this area is fibrous to touch. After dropping my children to school one morning, I scroll through Instagram while the kettle is boiling and I see a breast cancer blogger mention about her armpits. That’s how she found a lump. Absently I check mine. And here we are.
You see, once you have been through the cancer storm everything shifts. The gratitude, perspective and self exploring are all positive results. But cancer also brands you with mark of fear in your bones so deep that it becomes a part of your shadow. An imprint of trauma. A quiet threat that although you no longer have active cancer in your body, as far as they can tell, it could still come back at any time with vengeance.
So I am out on a limb. I didn’t want to laden my body with chemicals to switch off my oestrogen when I could instead, acknowledge that my life, like many of us now, was full of synthetic oestrogens in the form of food, chemical products and increased stress to name but a few. I could take some responsibility myself and take steps to balance my hormones naturally, to give my body a good shot at healing itself, rather than supressing the hormones with a pill for the next 10 years and therefore induce a medical menopause and all that comes with it at the age of 36 not to mention that in 10 years time, still a decade earlier than the average age of a breast cancer patient, I would still have a hormonal imbalance and potentially have another physical manifestation of poor internal health because I had not addressed the root of imbalance.
You might think that the process would be easier this time around, been there, done that. I know what is to come. But that is the problem. I know what is to come. And I feel paralysed with fear.
I don’t suffer with headaches. So when I get a headache, I think it might be a brain tumour. For a while I had a persistent chesty cough that wouldn’t shift, I thought it might have been lung cancer. My overly freckly skin has become a focus as I am worried about changes in my moles showing signs of skin cancer.
I know these fears are irrational. I would tell you the same. But when your own cancer diagnosis had ‘oversights’ that if you had not challenged and listened to your own instincts then you would still have cancer even though the white coats would confirm that you are now ‘cancer free’, then you would have fears too. Fears of recurrence. Fears of dying because of someone had missed something.
But the lines get blurred between the fear driven by a media narrative of cancer and that of your own instincts. When your only experience of the people that should know, is not only that they didn’t know but there was reluctance to take adequate steps necessary to find answers and then your health and wellbeing is in your own hands.
My belief is that if I want to be well then I have to live well. I can’t rely on someone else to find something if I am not in tune with myself. So the overwhelming pressure that comes with being solely responsible for myself is daunting. Because if I don’t, I could die. And then it all gets too much and I eat three bags of wotsits in under 4 minutes.
Again, this is not a sustainable narrative. It’s definitely not a positive one and it is one seeped in anxiety. There is some truth in there though.
I don’t live irresponsibly (apart from the wotsit episode/s) Most of the time I eat well with an organic and natural plant based diet, I take exercise and meditate (sometimes…). I have an ayurvedic practitioner, a herbalist and a counsellor. I am fully aware of the different aspects of health and try to live in balance. Sometimes I loosen the restraints and let my ‘hair’ down and then I think is this the reason I may have a recurrence. Because I didn’t try hard enough. I wasn’t disciplined enough. I wasn’t good enough. And then I realise that this is the exact type of unhealthy emotional battering that got me here in the first place.
So here we are, waiting again. Waiting for scans and biopsies. Waiting for results. So that is this month written off.
Naively I had just assumed that I was good to go. Live your life. As you were.
But ‘As I was’ is an impossible request. I was picked to get in the ring with an insidious and sneaky opponent. And unfortunately if I knock him out, there is always the fear that he might one day get back up. When my guard is down. The battle scars will always remind me what he is capable of.
Fast forward a week, I have had my scans and biopsies and await the results. It’s been a bastard two weeks, I won’t lie. My anxiety has reached a whole new level of chaos. I am talking quickly, moving quickly and am the least anchored I have felt in a long time. It presents itself in creative overwhelm. Nonsensical productivity to prevent me from filling my lungs fully. What do you do when it all gets a bit much? Well I create a new website, brainstorm a podcast, publish a children’s book, have another photoshoot, bury myself in an attempt to pick up my self employed professional life. Run. Drink tea. My consumption of tea and rich tea biscuits has increased significantly. I also shut away from my friends. Sorry-you know who I am talking to. The overwhelm is exhausting.
One positive thing that has come out of this regression is that it has allowed me to identify my unhealthy behaviour patterns. Yes they are coping mechanisms but they are barely effective. Pretend I’ve got it all together on the outside and no-one will notice I am falling apart inside. Not sure that works very well. Fairly sure I’m not alone in my approach to anxiety.
Results are in. Sat in the room with my breast nurse, my consultant and another surgeon.
“You still have breast cancer Samantha”
Well I didn't see that one coming. I had been assured throughout that it was likely scar tissue. I hadn’t taken anyone with me to the appointment because I was convinced it was scar tissue. Not only was I not cancer free but the cancer had spread to my lymph. Which wasn’t picked up earlier due to a horrible twist of fate. Not a recurrence. Not secondaries. The same cancer as before.I’m pretty sure my consultant was as shocked as me.
I break down in tears and slide down the chair with my head in my hands. This time we’re talking chemotherapy.
So here we go again. Waiting for appointments for imminent bone and CT scans. More surgery scheduled in to remove the first two layers of my lymph nodes.
Check yourselves people. Even when ‘they’ say it’s probably fine. Just check yourself. And check again. Don’t live in fear but take responsibility for yourself.
Cancer isn’t my enemy. It’s the most antagonist ally I have. It has forced me to get to know myself very well and appreciate life like I would never have known before. It has taught me so much. I just thought I had learnt the lessons. Not yet love. Not yet.