Niki’s story

Niki Shaw, shares with honesty, her personal journey with a throat cancer diagnosis during COVID.  From dealing with delayed appointments to harrowing restrictions, that included having to be separated from her husband for six weeks and medical staff who couldn’t support her as they would have normally been able or liked to do as before.  She talks frankly about the emotional impacts during that time and the methods she used to cope with it.   Here is Niki’s story.

Let’s be honest – 2020 wasn’t great, was it? For any of us.

I remember standing around a glowing, crackling bonfire on New Year’s Eve 2019, watching fireworks explode in the dark sky and celebrating with neighbours and friends, excited about all the ‘roaring twenties’ were going to bring.

What I hadn’t counted on was a worldwide pandemic, separating us from family, friends and colleagues for months on end, restricting our everyday freedoms, stripping our supermarket shelves and turning toilet paper and bread flour into luxury items, and making working from home the norm for much of the country.

I hadn’t counted on my day-to-day work and best plans changing so rapidly as we all worked urgently to support our vital care sector in responding to constantly changing Government guidance, obtaining PPE, securing staff cover and dealing with the devastating impacts of coronavirus.

And I definitely, definitely hadn’t counted on getting cancer.

I’m 38 years old.  I have never smoked, I’ve always been pretty active and healthy, and am not a drinker, so when a nagging sore throat hadn’t eased after a couple of months, I made an appointment to see my GP.

Perhaps because of my medical history, family history and age, all initial assumptions from the doctor were that this was very likely something not to worry about – perhaps acid reflux? But I knew in myself things didn’t feel right and a month or so later pushed for a scope to check down my throat as this soreness was feeling more like a lump, noticeable when I was eating or sleeping on my side.

Very long story short, Covid meant that my endoscopy appointment was postponed in March as the pandemic took hold, and it wasn’t until late July when I chased again that I was able to be seen.  The scope revealed a polyp in my throat, and after multiple tests, biopsies and scans following referral to an ENT Consultant, on 4th September 2020 I was told I had throat cancer, or to be specific, a T3 hypo- pharyngeal squamous cell carcinoma.

Just 3 weeks later, I would be admitted to a specialist cancer centre for six weeks of radical chemo-radiotherapy, two hours’ drive away from my home.

And when I say admitted, I mean admitted to hospital during a pandemic.

And when I say admitted to hospital during a pandemic, I mean no leaving the ward at all; no visitors whatsoever; no weekend passes home; regular covid tests; no therapeutic touch from medics who had to keep their distance in PPE; and no access to the usual wellbeing centres on site to help distract and support you through treatment.  So, yes, that was hard.

On reflection, I think it is fair to say I was pretty naive about the reality of what I was about to face.  I am a trusting and positive person, but being separated from my husband, my pets, my home, not being able to even open a window for some fresh air, let alone head out round the block for a little walk or a coffee, and having to face up to not only the rigours of my own treatment but also the exposure to the difficulties of other people on the head and neck cancer ward, was really tough.

For the first time in my life, I was getting ‘labelled’ and I didn’t like it.  “Anxious” kept being referenced by ward staff when talking to me: “I hear you’re anxious?”; “The nurse told us you have been anxious”.  I could feel that I was getting more frustrated.  Surely anxiety would be a completely natural emotion to feel in this environment and in this situation?  I wanted someone to recognise that, validate it and offer a little support.  Staff were friendly but focused; the ward was busy and full, and yet I have never felt quite so alone.

At first, I was convinced I didn’t really need to be there.  I was feeling ok after the first few weeks of treatment and looked well but was quietly observing the symptoms and experiences of others on the ward.  Many were noticeably depressed, some couldn’t speak at all, others had terrible scarring on their face or neck from surgery, whilst others were receiving end of life care and in really distressing states.  Not being able to ‘escape’ my surroundings or enjoy the things that would usually give me comfort meant I had to really draw on my reserves and focus on coping a day at a time.

By the time my 30 radiotherapy treatments had concluded, and my 2 cycles of chemo had been endured, I was allowed home.  I exited hospital a very different person to the one I’d been on entering.

Over the 6 weeks (and the weeks beyond as the radiation continues to build in the system after treatment ends), the skin on my upper chest, neck and face started to burn, tighten and blister, inside and out. I was very weak, slightly deaf with tinnitus, very physically sick, and reliant now on a nasal gastric tube for all my nutrition and medication after it become simply too painful to eat.  I couldn’t speak as my voice had gone as my throat tightened.  I had lost weight, mainly muscle, and lacked tone and definition.  My hair weakened and was falling out in patches round the back and sides of my head, coming out in great clumps after each shower.  My saliva had thickened, and I required a nebuliser to keep my airways clear.  My heart rate was worryingly high at rest, and just walking up one flight of stairs at home required me to rest and take a break mid-way.  It was clear my poor body was fighting hard against the sudden onslaught it was being subjected to.

I was so happy and relieved to be home with my husband, but the months between November 2020 and January 2021 were probably the hardest I have ever faced.  I didn’t recognise myself or my inability to do even the simplest of things.  I didn’t like the effects of the strong pain relief.  It became increasingly easy to get frustrated with myself, have my mind drift to the worst of fears, start to think that I would never get or feel better again, and that everything was lost. You don’t want to burden people or worry them and become quite skilled in masking your inner thoughts.  You try to remain stoic and resilient, but find yourself sleeping more or crying more, maybe not having the energy to get dressed and ready for the day.

There were some key aspects that started to change this and helped prevent me from slipping into any depression, and they really do link to the ‘5 ways to wellbeing’ that are being promoted this Mental Health Awareness Week 2021:

  • Connect:

One thing became clearer than ever before, and that is that I am so very lucky to know some really incredible people and have some truly amazing friends.  I was overwhelmed by the immense care and kindness shown to me during my illness, and the beautiful, thoughtful gifts, cards, messages and offers of support.

Colleagues and contacts on Twitter even sought to keep me occupied and distracted by starting a #photosforniki daily trend to cheer me up during my long hospital stay, sharing lovely images of the outside world that I so missed.  Others sent care packages to the ward, or weekly general updates to let me know I was in their thoughts. I started to realise that that connection with people (even virtually, when miles apart) was keeping me going, distracting me, reassuring me.  Even relative strangers got in touch to share their cancer experience and offer support.

Opening up to people can make a world of difference, and help you process your own thoughts and feelings. I learnt that even when we may feel quite alone, we never truly are, and that you are cared for in ways you never realised.

  • Be Active: 

I have always found that keeping active is a guaranteed way to make me feel more positive and energised.  There is nothing I enjoy more than heading outdoors, dog by my side, and enjoying the scenery whatever the weather.  My illness meant at first it was not possible to be active, either because of the restrictions on the ward or because I was too weak to be so, and I missed it.

However steadily, over the last few months, I deliberately started to push myself more to get back outside, to regain some stamina and build up some strength.  I knew that I needed to take responsibility and do whatever I could to help my recovery.  At first, I would walk slowly around the block, puffing my way up the gentle slope of the road, clutching at tissues to constantly clear my mouth and throat.  When my walks became easier, I was inspired by friends to try ‘Couch to 5k’, a steady, nine-week programme that supports you to learn to run.  Starting at the end of January 2021, I grew to love these three times a week challenges, not so much during the runs but certainly after! I liked that I was taking back some control and challenging myself.  I liked that it was doing my mind and my body good.  I completed the programme in early April and have since been able to return to previous levels of fitness.

  • Take Notice:

It is easy when feeling low or unwell to start focusing inward.  You start to live in the past or worry about the future.  Learning to shift your focus to the present and concentrate on the here and now, or something other than your own problems, is useful.  For me, I get a lot of pleasure in watching the seasonal, cyclical changes in nature – noticing the buds appear on plants, or the moon work through its phases.

I am really fortunate to live in a beautiful part of the world and am rarely without my camera when out and about.  The more you look, the more you find, and these simple distractions can make an immense difference to your wellbeing, creating bright highlights in days that might otherwise seem ordinary or difficult.  You begin to feel a sense of immense gratitude for, and joy in, the beautiful world we get to live in.

  • Keep Learning:

One of the most important things I have learnt over the last few months is that the most common outcome from a traumatic event is not post-traumatic stress, but rather post-traumatic growth.  Accepting the bad days, allowing yourself to fall down occasionally, but being confident in the knowledge that you are likely to emerge from difficult times healthier, stronger, better equipped to deal with life is something really powerful to hold on to.  Just look at all the positives and learning that have emerged from working and living through the pandemic, amidst the many significant challenges.

I have also learnt the importance of rest. It’s a cliché but time really is a healer and giving yourself ‘permission’ to treat yourself with care and compassion is conducive to a happy and healthy life.  So, take that break when you can, use your leave, lie in when you can – please invest in yourself and let go of any blame or shame.

  • Give:

There is much to gain from giving – a compliment, your time, your knowledge, perhaps a gift.  For me, I am determined to give back, to thank others for their support or help others facing similar challenges.  Being back at work has also helped me feel like I am contributing once more.  The routine, the structure and desire to make a difference motivates and engages me.  Find something, or someone, you love and give it your all.

I hope that maybe in some small way my experience offers some support to others this Mental Health Awareness Week.

Please know, we are all human, we all have difficult days, and you don’t need to face things alone.  Give yourself a fighting chance – stay active, eat well, get sunlight on your face, get enough sleep, consume positive material and surround yourself with support.

And as for me, I’m delighted to share that in April, I received the amazing news that my scan revealed a ‘complete metabolic response’ to treatment, meaning that there is no evidence of detectable cancer remaining.

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