Cancer During Covid and My Game of Sick Leave Roulette

Guest writer, Sarah Casemore, talks about her cancer diagnosis at the start of Covid, and treatment during lockdown.

‘In April 2020 at the start of Covid-19 lockdown, aged 48 with 2 teenage sons, I felt a lump in my left breast in what can only be described as feeling like a hard lemon pip whilst putting on my bra. In the following days, my anxiety grew as did my insomnia knowing what the outcome of this newly discovered lump might be.  All GP appointments had ceased being face to face, and a request for a call back from a doctor to discuss the lump turned into a wait of several days.  When I did get to speak to one, I was told it was “unlikely to be anything serious, probably just a cyst as most are” and was advised to put a warm compress on my breast which should ease things.  From 25 years of working both clinically as a physiotherapist and later in hospital management, I was disappointed by this response but appreciated the pressure that healthcare services were facing.  Leaving it a couple of days, I requested another call back.  This time, I was once again told it was unlikely to be serious but they would refer me for a routine mammogram as I was approaching the screening age.  Unhappy with this, I requested to be referred more urgently and was told that the doctor would call me back. Once the call was received, they said that a colleague had been consulted and the referral would go as ‘Two Week Rule’ on the cancer pathway as I had some eligible symptoms’.

By Sarah Casemore

In April 2020 at the start of Covid-19 lockdown, aged 48 with 2 teenage sons, I felt a lump in my left breast in what can only be described as feeling like a hard lemon pip whilst putting on my bra. In the following days, my anxiety grew as did my insomnia knowing what the outcome of this newly discovered lump might be.  All GP appointments had ceased being face to face, and a request for a call back from a doctor to discuss the lump turned into a wait of several days.  When I did get to speak to one, I was told it was “unlikely to be anything serious, probably just a cyst as most are” and was advised to put a warm compress on my breast which should ease things.  From 25 years of working both clinically as a physiotherapist and later in hospital management, I was disappointed by this response but appreciated the pressure that healthcare services were facing.  Leaving it a couple of days, I requested another call back.  This time, I was once again told it was unlikely to be serious but they would refer me for a routine mammogram as I was approaching the screening age.  Unhappy with this, I requested to be referred more urgently and was told that the doctor would call me back. Once the call was received, they said that a colleague had been consulted and the referral would go as ‘Two Week Rule’ on the cancer pathway as I had some eligible symptoms.

Within a day or so, I was contacted by the Diagnostics team at the Hospital and was brought in for mammogram and ultrasound scans.  Due to Covid restrictions, I attended these appointments alone wearing mask, having a thermometer pointed at my forehead like a space fiction scanner. The hospital where I had worked for 10 years had transformed into a Perspex screened area with randomly spaced patients and former friends and colleagues who didn’t recognise me as I nervously sat there not knowing what lay ahead in these tests.

On the mammogram nothing showed up.  On the ultrasound however it was a different story.  An area was seen that warranted having several needle punch biopsies taken, but again was told it was most likely to be a cyst.

On 1 June, with one visitor allowed to come with me, I went to the breast clinic to receive my results from, again, a former colleague with many years’ experience. Knowing how the clinic works, when the breast cancer nurse entered the room, I knew immediately what the diagnosis was.  My partner, oblivious to this small but important detail, sat quietly as I was told that unfortunately the news wasn’t good and it had surprised everyone involved in the clinical team meeting to learn of the cancer diagnosis. All of us wearing masks, not being able to get closer to console each other, made the whole thing completely surreal.  At a time when life changing news was being given, the most human interaction of comfort could only be held at a distance.

In the weeks that followed, more biopsies just as painful as before and an MRI result added to the picture and a management plan. Pre-operative quarantine began along with a panic of anything potentially interrupting my ability to have the lump surgically removed.  I told my line manager within a national charity about my diagnosis and was told to look after myself and to let them know if there was anything that I needed.

At this point the worry began as looking at my employment contract, with less than 2 years’ service in the role, I was only entitled to 4 weeks paid sick leave.  How was I going to fit surgery, post op recovery and daily radiotherapy for 2 weeks into this allowance whilst also allowing for any contingency should anything deviate from this plan? Why couldn’t cancer or any other unexpected diagnosis, not be an exception to this restricted allowance? If I had been there longer, my cancer, physical and mental wellbeing would have had more time allowed. I dreaded getting poorly with anything else for fear of what I would do if I couldn’t pay bills etc. So, I carefully set about planning how to use the time optimally…  allowing myself 2 weeks total for surgery and recovery, then daily radiotherapy but making up this time by extending my working day for an early start and late finish to make up for my midday absence hoping that fatigue wouldn’t get the better of me.  This would allow me 2 weeks grace should it be needed later.  I ran this plan past my line manager and there was no suggestion that I should take longer or if there was any flexibility in the payment aspect.  Some of this was for my own identity – I cope, I manage, I am resourceful so why should cancer take this away?  In my head at that time, I needed to be the best employee, the best boss, the best partner and the best Mum.  However, what I didn’t consider was being the best patient and friend to myself. I came last as I didn’t want attitudes to change towards me or my professionalism to be challenged.

I told only a handful of people at work about my diagnosis and reason for absence.  I did not want to be seen or treated differently or, more importantly, for anyone to ask how I was at the time and still now, I breakdown in tears when caught on a vulnerable day. I couldn’t comprehend being part of a club that so many others are in, with new joiners all the time, where I am a statistic and where a Race for Life event was now more poignant because I was the one who had beaten cancer.

The treatment was successful, it turned out to be stage 2 so it was good several of the nodes were removed too. I now take my Tamoxifen each day and go through the same ritual every morning and night as I lay in bed, self-examining my breasts and wondering if there is anything in there silently growing.  All scans one year on have, fortunately, been negative and I am endlessly grateful to the surgical and oncology teams that look after me always being there still if I get worried that a new ache or pain means something more sinister.

Not knowing anyone who had been through breast cancer, not having friends who could truly understand what it felt like made me feel more isolated.  There was humour though, on telling my sons about my diagnosis – one said “ only stage 2 Mum, Grandad had stage 4 and he was fine”.  I felt like I had lost on Cancer Top Trumps to my father who had beaten Stage 4 non-Hodgkins lymphoma several years before with a bonus point awarded for his 4 day ICU stay.

On reflection, I should have given myself more time – time to heal both physically and emotionally.  Had I sought counselling support then I might have been better prepared for the after effects of treatment, when the system has finished with you and they move onto the next unsuspecting patient whose life is about to turn upside down. Even ringing the bell at the end of treatment held no euphoria… what’s the point of ringing a bell when there is no-one there to hear it due to Covid limitations on numbers allowed in waiting areas?

Well what’s next? To start with a new role elsewhere as a restructure followed in the months afterwards. However, a whole different personal and wellbeing issue has started.  The type of breast cancer I had meant stopping HRT forever, and I now have cold-turkey menopause with all the associated symptoms for years to come at home and work.  Life is certainly a journey, but I am just so grateful to be here to enjoy it  and spend time with my friends and family – even if I now have to tick a new box on the forms which states ‘have you ever had….?”