The Swallowed Scream

By | Cancer, Humans of Wellbeing, Wellbeing, workplace | No Comments

Presence over pride

There is this stirring inside me that I’ve experienced for a few years now, it may have been there longer, just numbed or drowned out by the constant noise in my head and the distractions of the world we now live in.

I can’t even begin to describe what it is, yet I can tell you how it feels. It is an ache in my heart, a lump in my throat and a quickening of pace to get on with things. Yet, that quickening was also a longing for the person I lost along the way: for every time I said ’no’ inside, I said ‘yes’ out loud, in the moments I curled up, when I could have stayed open, for those times I went into hiding, when I could have shared the truth and all the times I ran away when I had the chance to stand still.


I’ve swallowed that lump too many times. You know that feeling you get at the back of your throat, the one ignored for politeness or personal pride. Except I got it wrong, rather than the lump, I should have swallowed my pride!

I’ve come from a strong line of women who’ve managed their difficult emotions, by concealing them. The overly used expressions I’ve grown up with “stop crying”, “don’t be a baby” and ones from the workplace over the years “you’re just too emotional”, “you need to toughen up to work here”, “can’t have you going off with stress”. These all had a significant influence on how I dealt with my emotions and continued to swallow and box them away.

Over the last few years I’ve had Acupuncture, Counselling, CBT, and Psychotherapy and it’s opened up places within me that have been locked tight for many years. I used CBT very successfully and yet the act of using a process also helped me distance myself from my emotional truth with remission. I continue to practice meditation and I’ve explored different techniques. I found myself in silence last August for 10-days wondering why the chaos inside ensued amidst the calm outside. Meditation showed me the truth inside and remains my cornerstone.

Then a day came, one I will remember for the rest of my life for truly practicing kindness to myself, within a coaching conversation. I was asked a powerful question that allowed me to honour the person I was during a terrifying time in my life. I had been sharing how my anxiety had been hustling me recently and how I had experienced panic attacks which had both surprised me and floored me after approx. 12 months without any. We explored why they and anxiety could be happening and we went deep into the discovery, rather than my own ability that kept me safe in the shallows. This is what I love and deeply appreciate about Danielle, my coach, I feel safe to go places within me, knowing that space is held safely.

Danielle had asked me a seemingly simple yet powerful question that I hadn’t even asked myself. Even as I write this now, I can feel the lump rising and the stalling as the words slip onto the keyboard “How did you feel when you were told you had cancer Ria?” I finally felt I acknowledged my whole feelings for the first time ever!

Soon after my diagnosis, I took to blogging as my therapy. The blogs were full of hope and were met with kind and well-intended comments that encouraged my inclination to silence the distressing feelings and share more about the other ones that were also present and positive — hope, mindfulness, and faith, with a more appealing picture to accompany it. At the time I recall a campaign #nomakeupselfie for cancer that also encouraged my desire to share my ‘I can beat this’ mantra I had in my head daily… it’s ultimately what got me through those the terrifying and awakening 3-weeks. The other distressing feelings were swallowed and squashed.

Those distressing feelings were deep deep shame, grief and painful loneliness which have all lingered at phases and stages since. As I sat there sharing those feelings with Danielle I felt my heart ache. It was and is time to honour those feelings and show one of the most important people in my life, my 5-year old daughter, that you can be brave and afraid at the same time. Feel it, not conceal it, as many of us learned during Frozen! It was time to swallow pride, not my own poison.

The day I was told that I had uterine cancer, changed me forever. I felt like I had been transported to another dimension, my own matrix and the loneliness ensued. I had no mother to turn to for the type of unconditional love only your mother can provide. I wanted to cry into her arms and hear her say “you will be okay”, but cancer had taken her many years previously.

I watched my daughter who was two years old at the time sleep that night. She had only just gone into a little cot bed and as I sat in the dark stroking her curly mass of blonde hair I wondered if I would ever share the moments my own mother had missed and more pressingly on my mind, would I still be here next month, next year. I so desperately wanted to cry in her room that night, but I didn’t know if the tears would end and the noise would wake her. I kept quiet and swallowed the tears inside.

When friends called to offer their support and say I would beat it, I really wanted to scream ”but what if I don’t. I’m so fucking petrified”. Instead, I showed my hopeful side. I preferred that part of me — it gave me strength. I swallowed the rest.

When I went for my MRI and CT scans I wanted to really slump by my dad’s knee and beg him not to let them take me. As the nurse walked me to the room, I turned to watch him walk in the other direction and the little girl in me wanted to scream “daddy please help me”. I was choked on my fear. I sat on that MRI machine and visualized those laser beams killing whatever cancer cells I had in me for the longest 30 minutes of my life. Thank goodness for my new practice, meditation and the words of Thich Nhat Hanh.

When I went in for life changing and saving surgery to remove cancer from my body I was wheeled down to the surgery room and all I wanted was a familiar hand to hold mine. I remember sobbing so hard because I knew what they were going to do would prevent any more chances to bring another baby into this world along with my own womanhood. I was deeply grateful for the gift I had with our own daughter and yet full of shame of what surgery meant for us all. I swallowed.

When I came around in recovery I was told I would enter menopause immediately. At that point of waking, I knew part of me had not returned. It was too painful to bear the reality of the situation. Anger took its place and started to grasp at me. I swallowed.

Months went by and I was told on many occasions how lucky I was. Lucky for not needing chemo, or radiotherapy, lucky to be here, lucky to catch it so soon. Told how women have hysterectomies every day and its common surgery. Reminded on many occasions that I cannot have children and my daughter will be an ‘only child’ and how challenging that must be. The guilt and shame piled on. I swallowed.

Those comments although meant well, were crushing. I didn’t feel lucky. I felt like something was out to get me. My scars were minor compared to the mental scars building inside me. I was crushed on the inside and the anger at times become too much to bear. I felt like I was burning inside, whilst wearing a smile on the outside.

For many months I went into hiding as much as possible from friends and family. My hiding came in many guises, from withdrawal, staying home, staying silent and also being a right little madam when that got boring. All of these versions of me was down to the shame, loneliness and grief I carried inside. I went through stages of wanting to physically run away and I found ways to make that happen in truth. When I realised I couldn’t run from it I started to punish my body by training hard, and withdrawing different food groups from my diet… anything that could give me control. That didn’t work either and the slippery slope continued until I started writing a suicide letter in my head on one too many occasions, putting the blame on people and places. I was petrified I would have such thoughts and more shame pilled up.

At that point, I couldn’t do it alone anymore and the Psychotherapy ramped up. I found myself in the woods, sat in my car trembling as I spoke to Jane a Mental Health Clinician. No one would hear me scream in the woods, but the scream was so big it was trapped within me. I will be eternally grateful to Jane and Munya, my Psychotherapists for their huge professional support at that time and to my husband, Gareth who has absolutely seen me at my worse and heard me say such heartbreaking words.

I feel grateful to have found a healthier lifestyle that continues to support me, because, despite all of those challenging emotions, I managed to hold down a job, functioned and at times flourished.

The return to work was a shock, post-surgery, the pace of work was like a constant sprint. The cultural norms of head down, back to back appointments/meetings, lunch on the run was prevalent then and still is now. After taking 7-months out earlier this year, to set up my own business, Well+, I’ve realised just how dangerous some of these ‘ways of working’ are to energy, creativity, flow, performance, relationships, and health.

We (Health and Wellbeing professionals) can all talk about what to do and why to do it… blah, blah, blah. The hard graft is showing up and practicing it. Leading the charge and going stealth with health by getting closer to the truth of what’s happening — sharing the good and challenging the bad, sad or mad practices.

This blog is wholeheartedly shared to acknowledge my own emotional story with a cancer diagnosis and remission, in addition to the change needed more than ever. More and more people are returning to work after illness, disease or loss and more needs to be done to support Leaders, Managers, HR Departments on how to support people back into all types of workplaces. I willingly will lead this charge! There is a mission in my remission after all!

Emotion is honest, raw and truthful — both the warm, fuzzy and dark and damp type. It needs motion, not stockpiling. What I know for sure and now finally accept is this is all ME — the light and dark. Without those lows, I wouldn’t recognize the highs. Without the pain, I wouldn’t recognize the joys. I am a human of wellbeing deep inside. We all are. It’s our natural state of being that we all deserve in work and life.

My long term absence

By | Cancer, long term absence, Return to Work, Wellbeing, workplace | No Comments

The elephant in the workplace and it’s not a ‘fit note’

In this picture, I felt relieved and relaxed of the fact that I had got through the most testing and terrifying time in my entire life, with life still ahead of me and most importantly sharing it with the most important people in my world.

A few weeks before we flew off for this much-needed break post-surgery I had been given the ‘all clear’ ‘crystal clear’ by my wonderful consultant. He remains my hero for his speed to solve.

After the momentary pause away from work from the crappy day of my diagnosis, tests, more tests, surgery and recuperation from having pretty much my entire womanhood taken from me, I returned to the workplace. Isn’t hindsight such an excellent thing — What a big mistake the way I returned, turned out to be!

I hope that as you read this and should you be in a position to make some changes in your workplace that you feel compelled to do something different. From hereon in I will be candid with my personal experience of returning to the workplace as a cancer survivor.

Over the last few years, many workplaces have been more generous with maternity, paternity and long-term absence for their people which having benefitted from two of those I will be eternally grateful. Before cancer came along, I was proud of the fact that I had not had one single day off sick EVER. I just didn’t get ill that often and if I did I ‘worked from home’, of course — the modern day work around!

Along came the blessing of pregnancy and during my maternity leave, I found different ways, rewarding and joyful ways to spend my time each day with my daughter. Fast forward ten months later, returning to work after maternity leave and I was fortunate to have a network of new mums in my workplace and in my wider network to call upon for support, advice and a few guilty tears.

Then one sunny day I race off to my appointment with my daughter and husband in tow and BOOM. Enforced leave. I didn’t choose this leave. I didn’t want this absence. In fact, I remember vividly driving into my then workplace and just wanting to stay at work that day and pretend nothing had happened and get on with my job and my meetings for the rest of the day. I was lost. A complete lost soul, not knowing what to do, who to do it for and what would happen if I didn’t have much time left on this planet — What would I want to do with my time?

I went home reluctantly with my tail between my legs no longer sure of my place and purpose in this world to start to make sense of the shit storm. I use that term lightly! Kris Carr nailed it in her book ‘Crazy, Sexy Cancer Survivor’.

I’d crawl over broken glass to go back, but I know I can’t. So what should I do?

What happened over those weeks leading up to results, D-day and surgery were nothing short of amazing with complete and total support from family, friends, colleagues helping me deal with the shock. A few colleagues from work knew the real reasons I was away from work, and I did rely on that private network of individuals. I wanted it that way initially because I didn’t have the strength to deal with people’s responses following a few mixed experiences and I was still in shock myself not sure what the hell was happening. I have also been on the other side of trying to be there for someone diagnosed with cancer when my mum was diagnosed in 2001. It’s tricky to navigate because so many things don’t get communicated through fear!

I returned to work after 11 weeks and that day was probably one of my most humiliating and saddest days of my working career. It wasn’t until I parked up and walked in with my hubby, who thankfully worked there and ushered me across the large campus that I realised the overwhelming fear and shame rise. Walking into a huge open plan office, I could feel my cheeks starting to burn, and my skin starts to sweat. I wanted to hold on to my husband’s trouser leg, scream ‘please don’t leave me’ and go and hide under his desk, but that would have been a bit weird. I left him at the stairs and walked towards one of the free desks.

I sat down and kept my head down. I got out my things, and everything just felt different. Who was I kidding, I was never going to be the same person. I stared at my laptop and was hit by a comment from a colleague that had all the best intentions, but floored me with his sense of humour. I sobbed my heart out in the toilet to hide my embarrassed face. I wasn’t ready for work and work wasn’t ready for me.

My first day back was spent pretty much on my own. My team and the Management were out and busy in the throws of what it takes to work in a fast-paced organisation. My return to work was so different to my previous return to work after maternity. No immediate network in place to call upon that shared a similar experience.

As the week progressed I spent time with some brilliant and caring individuals who helped me navigate my return and the job I was returning to but really, truly and only now can I see I was numb, angry and totally pissed with my world. I had gone from my bubble at home feeling protected, looked after and safe, to walking into a hustling and bustling business with people who looked like they were working in their own crisis. I had walked from a personal crisis and pretty much stayed in that mode when I returned to work.

As the weeks and months passed, I continually tried to shoe-horn my energy into my role, yet continued to burn out. It felt, and this is my truth, which may differ from THE truth that I was avoided by some, perplexed by others and an anomaly that just didn’t make sense (I even recall someone saying to me I just don’t know anyone that has lived after cancer!). I was sensitive to how it felt to be back at work, and I sensed unease, discomfort and more. I was all over the place mentally and emotionally although tried telling myself and others I was fine! I was naive, not strong or bold enough to say what needed to be said. ’Survival mode’ in a person and workplace can create unprecedented actions in people!

Over the last few years, I have tried to make sense and consider what could be done differently. Here is my personal view of what needs to be said and shared for future survivors from all walks of illness and absence when they return to work because for some walking back into the workplace is like stepping into the arena finding your place in your new reality:

  • Talk to the person and ask how you can ensure their return to work is supported from the minute they arrive, until the minute they go home on that first day.
  • The person returning isn’t always the best place to give you advice on how to deal with their return due to the shock, or conscious or unconscious change they are inherently experiencing. Get Occupational Health involved from the outset to ensure a smooth transition and return to work plan is devised alongside their GP/Consultant. If you don’t have an Occupational Health Team, either speak to your Private Health providers to get direction or use the guidance from their GP.
  • Ask the person what has worked for them previously when they have had time away from work (holidays, paternity, maternity — often they will have some previous habits that can assist) and what would help them feel supported. This helps bring logic to the forefront of creating a plan and exploring what could work.
  • Encourage complete openness and communication from the outset and discuss the elephant in the room. I spent some time with an amazing leader last week who supported a colleague returning to work following cancer and treatment. They had a session with the whole team to discuss what happened, how the person was feeling and how they team felt welcoming them back etc.. I know different ways will work for different people, but by ignoring the elephant it will NOT make it go away. You will all feel so much better after it, and if you work in a big department it ends up being Chinese whispers, and often the person returning to work has a different outlook on life and something urgent for example, may no longer be urgent in their eyes!
  • Build a network in your business of survivors, patients and people impacted by illness and disease. It took me a while to find them, but when I had the opportunity to sit and talk with people that had been off with cancer, heart attacks, depression, bereavement we found an understanding that was hard to get with others that hadn’t experienced life after…..
  • Introduce Keeping in Touch days (KIT) for people on long term sickness, train managers how to communicate in what can feel like uncomfortable territory and keep that practice up when they return for the first few months. Four in five (87%) line managers are not given any training on how to support people with long term conditions including cancer[1], according to new research by Macmillan Cancer Support[2].
  • Read up on ‘Return to Work’ information for the particular illness/disease the person has. The NHS, charities such as Macmillian, Mind, British Heart Foundation, Cancer Research etc…
  • Be aware of the laws protecting you and the workplace from the Equality Act 2010 to Disability Discrimination Act 1995.

I would love to hear from any organisation that has practices in place to support people returning to work from long-term absence, or organisations that provide line manager support. Feel free to get in touch via ria.ingleby@thewellplusgroup.com.

 

References from Macmillian.org.uk:
1 Line managers surveyed were asked whether they had been given any training in how to support employees with long term conditions including cancer.
2 All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1010 line managers. Fieldwork was undertaken between 5/25/2016–6/11/2016. The survey was carried out online. The figures have been weighted and are representative of line managers in the UK.