Corona Diaries

Hayley

“...in that moment we connected deeply as two human beings going through the pain of the pandemic, each

struggling to bear it, my tears spilled over the mask and she also welled up and we just took in the moment

of human contact. It was deeply moving, we said goodbye, I will never see her again, but I will never forget

her.”

Background Information

Female, aged 55-64, University Professor, North of London, White, Married with 2 grown up

children.

March 2020

I have a professorship at a UK University. I am in my 60s living with my partner (Bryan), I have two grown

up children. My daughter (Jessie) works and lives in London, my son (Andrew) is studying in London. In

October 2019 I noticed some breast changes and was rapidly diagnosed with an aggressive breast cancer.

The shock was enormous, my life changed overnight. At almost the same time our daughter announced

she was pregnant with her first baby, our first grandchild. I was both filled with terror of what my own

diagnosis and prognosis would mean and joy that there would be a new baby in the family, new life. It was

very hard to hold both of those emotions, but from that time forward my life became that of a cancer patient

and it became a full time occupation as I went through diagnostic tests, clinic appointments, a full

mastectomy in November followed by chemotherapy that commenced in January 2020 and then the arrival

of Corona virus in February 2020. And in parallel, a baby girl was growing, developing, moving, unaware of

the world she is coming into.

Scroll forward to March 18th. We were all becoming increasingly aware of the global impact of Covid19.

Cases and deaths were increasing daily in other parts of Europe, UK politicians were still talking about

containment, there were debates about herd immunity and flattening the curve. As a public health person, I

was fascinated by the scientific papers that were rapidly emerging based on the data from China and South

Korea. But on 18th March I had a chemotherapy session, the fourth in a series and I was about to switch to

a new agent, Docetaxel. Chemotherapy is administered directly in the veins via a permanent catheter

(PICC) that is inserted via the arm into the superior vena cava, just above the heart, and stays there until

the end of therapy. It is a constant reminder of cancer, of the onslaught of chemo and the vulnerability that

one has to entry of outside infection directly into the major veins and heart. Docetaxel is a toxic chemo

agent that is derived from the Yew tree, a very poisonous plant that in the UK is known for its fatal effects

on humans and animals. So starting this new chemo made me extremely anxious, the thought of this

poison being injected directly into my veins. I was also anxious about the increasing numbers of Covid19

cases, as a chemo patient I am immunosuppressed (chemo lowers the white cells, neutrophils that

normally respond to infection) how would my hospital be preparing for protection of patients? What would

happen if I did become infected? At that point there was emerging information coming out from Public

Health England and the NHS but guidance to the public was still unclear regarding social distancing and

isolation. So I attended the hospital for this new treatment with some trepidation. My partner had to wait in

the car park but there was little change in the reception area or waiting room, it felt like business as usual. I

was given quite a quiet seat in the chemo suite which was a relief, a chemotherapy nurse delivered the

Docetaxel just as all my chemo up to then had been given, clinically safely and cleanly but there was no

PPE in sight. It seemed strange, I asked about what would happen to my treatment if I developed

symptoms of Covid19, or to people in general on chemotherapy, would there be a postponement of

treatment? I was told this would be a decision for my consultant oncologist. It was difficult to assimilate

what was happening now and what would the future be for me and other cancer patients? I went home with

Bryan in a state of confusion.

But I was right to be afraid of Docetaxel. Within 24 hours the side effects started to kick in, body aches,

sore throat, complete lack of appetite, an awful bitterness in my mouth that makes even water repulsive,

fatigue, diarrhoea, nosebleed, I felt so unwell I could hardly get to the bathroom. I repeatedly told Bryan that

I felt as though I was being poisoned. I contacted my hospital and was told these were expected side

effects.

On 22nd March it was Mothers’ Day, Jessie visited and stood under my bedroom window, we talked later

with Andrew on Houseparty which seemed so new just a few weeks ago and is now part of our new normal.

It all seemed so sad and so novel at the same time, celebrating Jessie’s imminent motherhood, as well as

me as a Mum recovering from breast cancer and my own elderly mother (86) struggling to learn to use

skype on her iPad (she did it!).

Then on 23rd March lockdown was announced. I had already made the difficult decision that Bryan and I

should sleep separately, it felt like a risk when he was still going out to the shops to be too close. It was

also a loss, no bodily contact, no warmth or comfort at night when we most need it, no intimacy. With the

lock down everything changed again. I became increasingly unwell, unable to get out of bed but still under

the impression this was expected from Docetaxel. The news was full on about the rules of social distancing

and isolation, at first, I watched it from my bed trying to make sense of it all then became too unwell to pay

attention.

On 24th March I spoke to my breast care nurse (previously unable to contact) she advised me that my side

effects were severe and not normally to be expected, this was something of a relief in that I was not m aking

it up, but also a huge worry, what if I am like this for my next 2 treatments? She reassured me that she

would pass the details on to my oncologist and that the dose would be reduced. Later that evening my

temperature shot up to 38.5C and I was admitted to our local NHS hospital as an emergency and

diagnosed with neutropenic sepsis. This is when the chemotherapy agent is so aggressive it destroys the

white blood cells (neutrophils) in your body and lowers immunity and resistance to infection. In my case the

neutrophils were so low I had a condition known as neutropenia and my body was dangerously overcome

by infection, sepsis. No wonder I had been feeling so unwell, by that night I was truly terrified but also too

unwell to do anything except lie on the trolley whilst AE staff attended to my blood tests, intra-venous

antibiotics, IV fluids (I was very dehydrated) and vital signs especially the temperature. My terror that night

was fuelled by the thought that I actually had been poisoned and could die right there and also by being

completely alone. My partner was asked to leave at the AE reception desk, I was quickly taken away to an

isolation room, it was semi-dark, I had my iPhone but the call button wasn’t working, doctors and nurses

came in and out but they were clearly intensely busy and stressed, there was no time to just ask me how I

felt or reassure me, it was understandably about clinical procedures and waiting for results. Then the

obvious fear of being in an AE department where COVID19 patients must be being admitted and the risk of

transmission from staff or other patients (of course the isolation room was to protect me but my mind was

wandering everywhere). My other terror was the PICC line and whether the AE staff were experienced in

how to access and manage a line that goes straight to the heart. I already knew from the cancer centre that

few nurses are trained in the techniques. The thought that I could be further infected via the line was a

huge anxiety. However, they did start by taking blood directly from my hand veins and then when the

cannula for this started to leak someone came who knew how to give drugs via the PICC. I was in that

room all night with intermittent phone signal and contact with my partner wondering if I would ever recove r

and go home.

At about 9am a Consultant came in to see me, he was quite brusque but said I had a diagnosis of

neutropenic sepsis and would need to be in hospital for a few days. I was both relieved and terrified, I

would be in safe hands in an NHS hospital but also in a very challenged environment and alone. Eventually

I was sent to a ward and cared for in isolation for a further 3 days. During that time I received the IV

antibiotics and fluids, a different consultant came to see me and just looked straight into my eyes and said

‘you are going to be alright’, I was so helped by that moment but he will never know. I couldn’t eat despite

hospital staff bringing me endless trays of food. The nurses looked after me and the PICC line, but the

nights were especially long and lonely with the blue lights flashing outside my window and the general

sense of the level of stress and busyness of the hospital.

On my last morning a nurse in her mask came to give me my IV antibiotics. She looked at me over her

mask, I too was wearing a mask, we could only see each other’s eyes. She spoke about her 3 year old

daughter recently brought to England from India (before the pandemic), I spoke about my expected

granddaughter and in that moment we connected deeply as two human beings going through the pain of

the pandemic, each struggling to bear it, my tears spilled over the mask and she also welled up and we just

took in the moment of human contact. It was deeply moving, we said goodbye, I will never see her again

but I will never forget her.

That day they also decided as a precaution to test me for COVID19 and discharge me under the care of a

virtual hospital. This meant that I was contacted for several days afterwards by a respiratory consultant to

check my symptoms and progress, I found that amazing. He was able to reassure me that my test was

negative. After several days I started to feel stronger, able to be up and about around the house and watch

the garden gradually emerging from my window in the room I now call my isolation room.

On 2nd April I received a letter from the government saying I am on the list of ‘extremely vulnerable’ and that

I should stay at home for 12 weeks, not go out even for exercise, only for essential medical appointments.

So here I am in my shrunken world, living between the isolation room occasional visits to the kitchen, sitting

room and garden with a sense that I am now being ‘shielded’ from coronavirus by my partner, my friends

and family and my own actions. It feels so strange, so different so scary to be ‘extremely vulnerable’ and

yet the hospital admission proves how vulnerable chemotherapy can make me. I don’t want to go through

that again, so I will do as I am advised and sit it out for the next 10 weeks.

April 2020

I think I can say that April 2020 has been one of the most challenging months of my life, even harder in

some ways than March despite the hospital admission. From when I received the notification that I was

‘extremely vulnerable’ I had to start the month by accommodating the idea that I wouldn’t be able to leave

the house or garden, that my world would be contained within the isolation room, that I would spend every

night without the comfort of Bryan beside me, and only going outside when weather permitted. Strangely, I

wondered what I would do for exercise, our garden is very small, no real scope for long walks and I am not

the kind of person to do work outs or online yoga. In life before CV (I will call it BCV from now on) I enjoyed

my bicycle and my allotment more than anything. So, I decided to order an exercise bike that I could use

either in the garden or indoors if wet. First challenge, every exercise bike on the planet had already been

snapped up, suddenly everyone was taking exercise seriously after decades of public health advice that

has been largely ignored, now you can’t exercise in your own home for love nor money. After endless

searching on Google and Amazon (all shopping ethics flown to the wind) I finally found a cheap foldable

exercise bike (£109) that I thought would do for 12 weeks. It has become my best friend. The majority of

April (up until 27th) has been warm, sunny and dry in my part of the country. Every day until 16th April

(chemo day) I am on the bike gradually increasing my distance whilst listening to my favourite composer,

Ludovico Einaudi, on my headphones. I can watch the sky and the trees and imagine I am on a real bike

ride. It is soothing, an escape from the isolation room and a space to think and reflect, I can hear the birds

chirruping over the sound of my music, children playing, grass being mowed, people living their lives. The

daily ‘cycle’ has become a part of my day. Meanwhile Bryan is able to go on a real bike ride for about an

hour which he does every day. I am jealous.

The bonus of the first half of April is that I am given a week’s postponement of chemotherapy and a dose

reduction to compensate for the neutropenic sepsis in March. During that extra week that included Easter I

feel as though I have a reprieve, a stay of execution almost. For 2 whole weeks I start to enjoy food more,

pottering in the garden, enjoying new garden furniture. I go back to some of my academic work, supporting

PhD students on skype, responding to grant applications, working via skype with a post-doc who is stuck in

the UK until flights become open again. I feel for her, she has a son at home who is living with his

grandparents. But she seems resilient, very hard working and ambitious to develop her academic career.

And it feels good for me to do some work, a welcome distraction and stimulation.

Easter comes and goes, it doesn’t feel any different to any other weekend, I am still not eating properly so

food not a big draw. Our children are both in London so we see them on a new-to-me app called

HouseParty. Turns out to be quite fun, a form of skype with games. We use it whilst Bryan sets a fire pit in

our little garden, a novel undertaking as he normally hates eating outside but he thought I would enjoy the

warmth and the woodsmoke. We cook a few sausages I had somehow found on Amazon Prime food shop

(and which has now become our only source of shopping, despite every claim about ensuring access to

online shopping for the extremely vulnerable, none of the major supermarkets have been able to offer me a

slot, so I use Prime Now regularly). Our grown-up kids enjoy watching us bicker and muddle our way

through a very fierce fire pit, we are just sad they couldn’t be here in reality and share a hot dog on Easter

Sunday evening. The missing of everyday and ordinary events is what is so hard about all this.

Another disappointment is not being able to go to my allotment. I have kept an allotment since about 2008.

It’s hard work but rewarding and I love the feeling of being outdoors with nature, turning the soil, planting

and growing, the rhythm of the seasons and looking forward to my modest harvests each summer. I am

especially fond of growing strawberries and sweet peas and suddenly feel bereft at the thought of just

leaving everything to nature. And the threat of expulsion from the allotment inspector! I toy with the thought

that maybe I could go occasionally, but it’s about 15 minutes’ walk from home there are gates and locks to

handle and despite distance, there are others there. So, I dispose of that idea quite quickly and decide to

order a large garden pot, fertiliser and sweet pea plants and grow them in the garden. Visions of a beautiful

wigwam of sweet peas filling my garden with scent and colour. Another relentless search online for sweet

pea plants, seems everyone else has taken up gardening as well as exercise. What else is there to do?

Finally I find some, that still have not arrived but are promised. If I ever manage to produce any sweet pea

flowers I will include an image, as they really are amongst the loveliest of blooms.

Throughout, the daily numbers of CV are rising, it feels as though we were right behind Spain and Italy and

that any sense of the UK getting through the pandemic more successfully than other countries is fast

fading. A culture of online videos has emerged that both mourn the deaths and the desolation of countries

and parody the new world that we are coming to accept as what we do. Stay at home, stay safe. A way of

protecting ourselves against the horrors I suppose. At first, I welcomed the creativity of the video makers,

the cleverness of bringing the chorus of the Italian State Opera together to sing Va Pensiero was both

intensely moving and technically brilliant. It has got to the point now that if anyone else sends me an

amusing video on WhatsApp I might scream. But they are clever, nonetheless.

I have found a pianist on Facebook who plays lovely piano music from his home in Holland every day, that I

enjoy because he seems like an ordinary man who is facing the lock down through music, he seems warm

and friendly, I share his taste in music and it feels as though we are sharing some of our country’s fears

and sorrow through his playing.

As a lover of poetry, I come across the words of Rilke1, that the greatest human bond is to protect each

other in our solitude. This resonates so much with me, I return to it often as a way to think about humanity

in this isolation.

A further challenge is a constant anxiety about our son, Andrew. He is a student in London, he decided to

remain in his student house, isolating himself, because of his concern for my vulnerability. But he is

vulnerable in a different way, he has a mental health condition and can slip into depressive episodes that

are hard to recover from and so painful to be alongside. But now I can’t go to him and he can’t come home,

the risk is too high. We talk every day, helplessly send him Easter eggs and other treats, listen to him and

feel relieved when he immerses himself in a music project that seems to structure his lock down days and

keep his mood relatively stable. But I remain anxious for him, that he will find the isolation too much to bear.

Then comes 16th April, chemo day. Poison yew day. I go to the hospital in trepidation, both because of the

fear of a repeat of the last treatment cycle and the sense that hospital is where COVID19 lies in wait. I just

hope that all the precautions are being taken. The change from my first chemo sessions in January and

February is phenomenal. Then, the unit was abuzz with activity up until early evening, patients were

encouraged to bring a relative or friend with them, nurses and doctors were highly busy, patients constantly

being called for their treatment, the WRVS café open for business, drinks and sandwiches offered to

patients in the chemo suite. Now, no relatives can enter with the patients so I have to go on my own whilst

Bryan waits in car park. The waiting room is almost empty, everyone is solemn and masked. I have a cloth

mask that was made for me by a friend, I wear it because it makes me feel protected in my solitude, but

really I know it probably isn’t doing much and being cloth and damp with my own breath might even attract

infection, so I take it off. The chemo suite is actually almost full with patients but the atmosphere is quiet,

everyone getting on with their treatment, anxious to get finished and go. No chit chat, sharing of

experience. My nurse is lovely, pays attention to my previous experience, really understands the awfulness

of it all, reassures me that my dose has been reduced, that I should be much better this time. She makes

sure everything is set up efficiently to infuse the Docetaxel into my PICC (poison into my heart) and that I

have everything I need. Its all done within 2 hours and then I leave with a sense of escape from contagion.

At home I feel it has gone quite well, don’t feel too bad. Until Friday evening when suddenly the side effects

return, extreme fatigue, body aches, dry mouth that makes everything taste bitter, loss of appetite,

sleeplessness. The next 11 days I am back to feeling as though I am being poisoned and confined to the

isolation room. I feel a mixture of being let down, anger, despair and hopelessness that I feel so unwell as a

result of something that is supposed to be making me better. I cry quite a lot, I don’t sleep despite the

fatigue. Friends and family call me and I am almost too tired to talk, they get worried. I can’t even focus on

reading or TV. Bryan and I worry together that I will end up neutropenic again and back in hospital, the

anxiety of not knowing and not being able to just get instant reassurance is awful. The fear of being back in

an acute hospital alone seeps through me. But I do eventually speak to my breast care nurse and finally go

back to the cancer centre for an assessment. My white cell count is OK, that’s a relief, but the severity of

the side effects suggests another dose reduction which I am also relieved about. By day 11 I start to feel a

bit better, the body aches have eased and the tiredness is less. I had wanted to do the 2.6 Challenge on

my exercise bike to raise funds for a local mental health charity, and after a very gentle practice in the

sunshine, I decide that I might be able to do it the next day, just 26 minutes at low tension on the exercise

bike. And I do, a real sign that my body can fight back and can survive this awful toxin. I feel really pleased

with myself and finish up raising over £600 for the charity, feels like a turning point.

The final chemo is scheduled for 7th May and I start to think, that’s OK, last one I will survive this. I find

more energy, start to regain my appetite. It feels good to recognise hunger and to be able to taste even

small things like fresh tomatoes on the vine, mozzarella cheese, olive oil. It feels normal and I sit in our sun -

filled garden soaking up the flavours of such small delights, different to feeling tasteless, nauseous,

poisonous.

On the night of 28th April, I go to bed in my isolation room. Usually, I am sleepless, restless with anxiety,

feeling unwell. My usual sleep pattern is to lay awake for the first part of the night, sleep for a couple of

hours, often awake at 4 something and then might sleep again for another 2 hours. My nights are lonely

and often frightening, I have a tendency to hypervigilance, being aware of every sound and jolting awake

suddenly. But strangely on 28th I sleep better and when I look at my phone at 7:15 there is a message from

my daughter Jessie at 04:40 to say she was in labour! This is both exciting news and worrying

simultaneously. My daughter having a baby, bringing her little girl (we knew the gender) into a Covid world

where everything is nothing as we had imagined it would be. My cancer and her pregnancy have followed

parallel paths of pain, surprise, suffering, love and coming together in the hope that new life would heal and

help me. How could I have slept through this moment? It seemed extraordinary that of all the nights of

sleeplessness, on this night I actually slept. Jessie and her partner Terry have a very long day, during

which Bryan and I wait for the safe arrival, wondering every hour how they are and knowing that there was

a risk that Terry would be asked to leave and Jessie would have to deliver her baby alone. I felt thankful for

the sleep and for being past the main chemo symptoms, I could focus on the birth and wait for the news.

Finally on 29th April we hear that baby Eve has arrived in the world.

She brings light into my world. But I can only see her and my child, her mother, through glass, through the

wonder of technology. I instinctively yearn to be with her, to hold her to smell her baby hair and breath, to

feel her skin and touch her tiny hands and feet, to soothe her when she cries and to wonder in her

immaculate small body that rests so perfectly on Jessie’s breast and finds her comfort in Terry’s strong

arms. An ache that grows as we all experience the isolation of separation from each other and the effect

that the virus is having on families everywhere, the impact on our need to be together, to touch and hold

and just love. I am thankful beyond measure for her life, and for Jessie and Terry becoming new parents,

but I also feel so deprived of the closeness we should have had, so let down at a very personal level by the

actions of government and failures to act soon enough that could have stopped the exponential growth of

the transmission. That could have kept families together in life and in death. And so deeply, deeply sad that

there is so much uncertainty I can’t find hope, and I need to have hope and belief that this new family will

survive the pandemic and I will hold Eve for the first time, and we will know each other. I need to believe

that we can protect each other in our solitude.

May 2020

As we enter May I feel a bit more positive about getting through the chemotherapy, after all it is only one

more cycle and the dose has been further reduced so I thought it would be much more manageable. I talk

on WhatsApp video every day to Jessie and Terry and go through both the joy of seeing our baby

granddaughter, Eve, and the pain of not being able to be with them. The maternal need to hold them, feel

Eve’s little body, breathe in her scent, touch her skin is overwhelming, heart-breaking. I watch Jessie

breastfeeding and we talk and I do what I can through the glass screen of my iPhone but to be there to just

hug her, love her, support her and help with the domestic side of things would be such a gift, it’s hard to

imagine that in life BCV we took such things for granted. Even if I had felt unwell from chemo I would have

visited them, although ironically and thankfully the week Eve is born I am somewhat better. So, in these

uncharted circumstances at least I am more able to engage in the WhatsApp conversations and see that

this new family are well and navigating their own uncharted course.

One day during this time I read back on my medical notes and in my histology report after surgery I look at

my prognostic score, 6.94. I have not previously researched this, I didn’t want to know. But now that chemo

is coming to an end I find I am curious about what it means so I Google it. And find that it means my five-

year survival rate is 50%. This shocks me deeply, the surgeon had said he would cure me of cancer, the

oncologist that the chemotherapy and radiotherapy would protect me from recurrence. But it seems the size

of the tumour and the involvement of the lymph nodes are significant in determining my prognosis.

It affects me profoundly for a long time, the thought that I might have a 1:2 chance of not reaching my 68 th

birthday, of not seeing Eve when she starts school, of not being here for Jessie or our son and of course

Bryan, of not having the life I had imagined and being with those that I love. All of this stays with me and I

feel a deep sense of grief for what might not be, for future losses. The isolation especially at night doesn’t

help, I have too much time without sleep to think about my life and death and how the next five years of

monitoring and waiting will be. Bryan, always the calm one in our relationship, says you have just as much

chance of being here as not. Statistically that’s true, emotionally it doesn’t help. I decide to talk to the

oncologist about it and when I do he says the chemo and radiotherapy could improve the chances to 75%.

That feels better, but he won’t expand. Later in his letter to my GP he just says its hard to know, another

uncertainty that I have to try and live with. Facing my own mortality and thinking about what it means with

or without statistics a huge thing to reflect on and think about, and hard to really talk about with anyone,

adding to the sense of isolation.

On 7th May (my best friend’s, Jen, from school, birthday) I go to the hospital for my final chemotherapy

treatment. It feels like a huge deal, 20 weeks of harsh treatment finally finished. The hated PICC line

removed, no more yew poison going to my heart, the symbol of everything that was awful about cancer.

Again, under my ‘shielding’ regime it feels strange to be out at the hospital, but also an odd kind of

freedom. Freedom from chemo and everything I have been through, but also freedom from lock down and

isolation. During the 35 minute journey there and back I can see the horse chestnut trees in their white and

pink May blossom, the bright greenery everywhere, lilac in peoples gardens, some signs of life as people

go to work or out for their exercise, maybe some just doing what they like. I feel constrained that I can’t do

what I like, I have to conform to the rules to protect myself and others. I want to just get in the car and go to

my daughter and granddaughter, I want to just keep driving or cycling and have the freedom of the road

and countryside ahead of me. A friend tells me on text that she had a dream that she and I were on a road

trip together, like Thelma and Louise. I think how wonderfully freeing from everything that would be. How

easily I could just drive to someone’s house and park outside to wave, maybe talk for a few moments. But I

don’t do that. I know I have to shield myself and protect others, who knows if I might pick up the virus at the

hospital? I could be unknowingly carrying corona virus however careful I am. Thelma and Louise didn’t end

well.

The freedom from chemo feels good to start with, the PICC is gone and I can shower normally, not worry

about what position I sleep in or whether the line is blocked. No longer there to remind me that I have

cancer and that I feel as though I am being poisoned. Then on day seven I start to feel breathless and light -

headed, just walking downstairs or into our tiny garden is exhausting. I have to sit to recover my breath. By

day eight it is worse, by the evening my respirations are rapid and I feel as though I am gasping for oxygen.

I meet someone on skype and I can hardly speak. She is concerned and says I should contact my doctor.

On day nine I still feel dizzy and short of breath and when I call the cancer centre I am told I must attend A

and E immediately. I am shocked and frightened, back to the acute hospital, to the CV outbreak, to the

place where I was isolated and so ill in March. I don’t want to go, but Bryan says I must so we do. I am

there for 5 hours undergoing blood tests, ECG, X-ray, examinations, IV infusion, IV antibiotics. In the

absence of the PICC they struggle to cannulate me and I am left with a massive bruise that looks as though

I have been abused (I have). The doctor is worried about pulmonary embolism (blood clot on the lung) and

says I can go home after anticoagulant treatment but must return next day for a CT scan of my lungs. So, I

spend a night alone in terror of dying from an embolism that might block my major artery silently rather than

sleep with Bryan in case he or I are carrying corona virus. These are the almighty decisions we make

during this pandemic, life or death, to be with or not be with, to hold or not to hold, uncertainty brings no

freedom only fear and pain.

The scan is clear. I do not have an embolism, or recurrence of cancer or CV. Relief, the doctor tells me I

should rest more, that breathlessness is probably related to my blood count. So, I sit in the sun and wait for

Bryan to pick me up, come home and try to rest and wait for my blood count to recover.

May is the hottest it has been since records began, sunshine every day that warms my skin and brings the

roses into full bloom and dries the earth to dust. I have to water the plants every evening, a small task that

feels like a huge achievement and for days to come leaves me exhausted. My days are unvaried, Bryan

brings me breakfast every morning in the isolation room and together we review our birds on the feeders

captured on the camera he set up. It’s a pleasant start to the day to watch the robins, blue tits and coal tits

coming and going, and the surprises – the jay with its startling splash of bright blue, the sparrow hawk that

visits once and sits on the fence waiting for unlikely prey in our city garden, the rat with its two bright eyes

caught in the camera light at night attempting to climb up to the bird seed, the squirrel with the agility and

balance that helps him to raid the bird food successfully and almost empty it. Each day feels the same, I

am restless at night, sleep interrupted by an incredible thirst that makes my mouth glue together, combined

with a generalized anxiety about just about everything, early light and our cat scampering about in the

night. I feel tired when I start the day and tired when I go to bed and still don’t sleep well. Time feels

strange, like living in a time-lapse, everything either slowed down or speeded up. I watch my sweet peas in

their pot start to scramble up their wigwam, I long for them to survive the dry weather and water them often,

like nurturing a child. I do a little work, I use my exercise bike and try to build up my kilometres, I listen to

the music I love on Spotify, I sit in the sun and wonder if I should with radiotherapy coming up but decide

it’s a small pleasure and the vitamin D will do me good. I talk to friends and family on WhatsApp but I can’t

focus on reading or TV. I have a stack of books to read but can only manage to read one at a time, slowly. I

used to read so avidly but I just don’t have the energy to focus.

And in the midst of it all the death rate from CV comes down slowly but not significantly compared to othe r

countries, there is a crisis about Care Homes, and about a government aide who breaks the rules and is

too arrogant and too needed by the Prime Minister to resign. I feel the anger too, it seems so unfair and

hypocritical that he can ‘follow his instinct as a parent’ whilst everyone else follows the rules. Whilst I follow

the rules. There is a weekend of public outrage that is diluted as soon as the PM announces some

relaxation of measures, and the sun draws people to the beaches and beauty spots around the country in

thousands. Suddenly there is a feeling that CV might be over, but it isn’t and watching the events unfold

and reading various scientific papers I am filled with anxiety that there will be a second wave of infection,

that more people will die, more lock down and isolation and the ‘shielded’ will be even more isolated for

longer. And yet, I need so much to see Eve face to face that Jessie, Terry and I decide that the risk of

meeting in the garden will be close to zero and so they come. It feels somehow wrong, as though we are

doing something criminal, but it’s just an outdoors visit to meet my grandchild a day before the rules

officially change. And it is wonderful to see her in the flesh and to be with Jessie for a little while, even

though we can’t hold or hug, she feels tantalisingly so near and yet so far. But it is good for all of us

emotionally. This small act feels so significant. I long so much to be with people I love, to get out of the

house to walk or cycle, just within our lovely city would be enough. But I know its too soon, I am not going

out yet, I must protect myself and others in our solitude. I must be ready to start radiotherapy and the next

part of my cancer journey.

June 2020

Thirteen weeks in isolation so far. I have been nowhere apart from the hospital, touched no one, stayed in

the house or garden. The isolation room is almost disturbingly normal. It has become a kind of cocoon, a

place where I sleep, work, eat, read, talk to people on WhatsApp and cry. I see Bryan in the mornings when

he brings breakfast and we run through the (never changing) day, review our bird camera and hope we will

see something new, we never do, not since the rare occasion when a sparrow hawk mysteriously visited in

early April. The tits, robins, dunnocks, fattening wood pigeons and the odd magpie or jackdaw fly back and

forth, reminding us that in nature life is always the same –the forage for food, nurturing the young, heart-

rending song to a mate, the ruffled fledglings leaving the nest, roosting for the night and starting again

when the sun rises again. Survival is instinctive and repetitive; we are much the same. The view of the

garden expands into a floral patchwork of roses, clematis, verbena, allium, crocosmia, penstemon and

other things I can’t name. Each time I open my window I am greeted by the heady scent of honeysuckle

and I remind myself every morning how fortunate I am to have this beauty outside my window, to breathe

clear air and honeysuckle, to see the sky whether it is dark cloud or startling blue. How, whatever I think I

have suffered, others have suffered too from loss, grief and a life so unexpected and different from the one

they wanted. And the endless uncertainty of it all, none of us really know how long this will go on, if the so

called ‘new normal’ will be distance from others, masked faces, illness, early death, more deprivation, more

loss. The news becomes less important somehow, the briefings less convincing. How can we now be at

level three when there are still over a hundred deaths a day? Who is making this up?

I haven’t seen my son for 13 weeks, we talk on WhatsApp but it’s not the same. I sense that he doesn’t

want to tell me how hard it is to be distanced from his family, he knows I am shielded and the risk that

coming home might bring. I feel anxious about his mental health, his isolation. But each time he composes

a new musical piece and sends it to me I realise he is finding his own way through this. My daughter and

her partner visit the garden again with the baby, that feels different – is it because the need to see them is

so strong I subconsciously make it ‘safer’ than seeing Andrew? Isolation plays mind games with me, logic

and reason are there but are often overwhelmed by fatigue, physical changes due to treatment and

emotional need. There are others I long to see face to face but it’s just not possible yet.

Radiotherapy commences. I feel almost excited about driving myself to the hospital, the freedom of the

road, the sense of the pedals under my feet, my hands on the wheel, and the liberty to just go where I like.

Except of course I don’t, I go to the hospital and come home. I turn my music up and let it fill me with

whatever I feel at the time. Grief, anger, envy, heartache. The urge to just keep driving and rebel against

reason is there, to drive to someone’s house and stop to wave or hug and talk is enormous, I stop myself

thinking about it, it could only end in disappointment and let down.

Radiotherapy is a strange experience, different in every way to chemo. There is no kind nurse talking to me

or checking how I am, despite all the challenges of chemo I felt looked after. In radiotherapy the

atmosphere is clinical, depersonalised. We are all masked, I remove my clothes and lay semi-naked on a

cold radiotherapy table. I am measured and re-measured by two radiographers, both male most of the time.

They leave me alone whilst the treatment is underway, the final stage of cutting, poisoning and burning. I

can’t feel the burn, but I have been told I might feel the full effect 7-10 days after treatment ends as

radiation is cumulative. The room is cold from air conditioning and very white. As I lay face up on the table I

watch the machines circulate and see my own ghostly image in the X-ray machine. It’s like looking down on

myself, a surreal sensation of watching myself in a film. I am relieved each time it is over and I can retreat

to my car, find different routes to travel home by so that I can spin the journey out and see different parts of

the countryside and local towns. On the day that the shops re-open I drive through town and am shocked

by the number of people wandering about in the sunshine, unmasked, looking as though they are doing

what they like and life is back to normal. I also feel envious of them, that they feel able to roam freely whilst

I have to go back to my isolation and my longing for human contact. But I also recognise the general need

to be out and about, to get out of lockdown, enjoy the weather, wear summer clothes and feel the normality

of shopping, children chatting and bickering, seeing familiar places and people, forgetting about

coronavirus for a couple of hours. My public health mind and my human self can come together for a while,

understanding the really desperate need to be out. Not for the first time I contemplate on the existential

crisis we find ourselves in.

At one of my radiotherapy sessions I am met by a different radiographer, masked, a male he introduces

himself and says we have met before. Out of context I am rather confused, but it turns out he was one of

my masters students, I supervised his dissertation! The unexpected connection feels good, he knows

something about who I am, I am not just a patient number. He kindly asks if I am OK if he treats me today?

I don’t mind, it’s a professional relationship and for me the comfort of a (now) familiar presence means

more than any worry about him seeing me undressed. Afterwards, we chat for a few moments and he tells

me he is still doing research, he is head of the radiotherapy unit and that he has a lot to thank me for. I say,

no I should thank you and your team for what you have done for me, otherwise I might not be here. We are

quits. He says I can contact him at any time, it was good to see him but I only have a couple of sessions left

so I am conscious we probably won’t meet again. Nonetheless, it leaves me feeling much better about the

process of treatment.

Radiotherapy comes to end. On my last visit to the hospital I feel strangely sad, I want it all to finish and yet

the hospital has become a place of familiarity, safety where I go to be treated for my cancer whilst the world

around me continues to struggle with corona virus. And it is a very unsettling feeling at the end. Th e two

radiographers who treat me that day are less familiar, they spend a great deal of time measuring me and

adjusting the machine, they seem to hardly notice I am there half naked laying on the table. I watch the

machines above me and say goodbye to my ghostly self in the X-ray machine looking down on myself. At

the end I get off the table and as they busy themselves cleaning it for the next patient I say, ‘Oh well, that

was the last one’. Oh yes, she says, do you have your follow-up appointment? And that’s it. I walk out of

the hospital into the searing Friday heat, back to my car and no one says anything about the last 9 months.

Its as though none of the cutting, poisoning or burning that I have been through has happened. I feel totally

alone, discarded and just collapse into the car and cry solidly for about 20 minutes.

I drive home feeling empty and collapse again in the evening with the burden of everything I have been

through during the coronavirus pandemic weighing down on me.

Then the government send me a letter about shielding. Restrictions are to be eased, from 6th July I can

have 6 people in my garden, go out to exercise as I want to and stop socially distancing within my

household. From 1st August shielding will be paused, I will become one of the masses. But it is

paradoxically all caveated with how clinically vulnerable I remain. None of it is personal to me of course, it

is a general letter that has been sent to 2.5 million of us who are shielded. The dates seem arbitrary, why

would I suddenly have 6 people in my garden from 6th July? I have no desire to go outside for exercise, in

fact I am afraid of what I could encounter given my immunity is still compromised and from what I can see

on the news people are starting to ignore social distancing and mask wearing is the exception. I keep

remembering the phrase ‘I protect you, you protect me’ and wondering why it is that people can’t see the

value in face masks? I decide that I will make my own decisions and behave on the side of caution, so

much as I want to be with people I also want to protect myself and others from this unknown, unseen virus

that hasn’t changed. It’s us that change and want to get back to ‘normal’, our threat is still there, waiting in

the wings to find its host and keep on reproducing.

June comes to an end, I have completed my main treatments, I have met my baby granddaughter, I have

come through coronavirus. I am changed by it all, some of it has been savage, life threatening, but I am

alive. Coronavirus is still with us, maybe less so, but I can’t allow all the work done in my cancer treatment

to be undone by a virus, so I will stay safe, stay well and hope to be here in five years.

My sweet peas start to bloom, a startling pink and gentle fragrance. There is some constancy in the world.

Follow up from Hayley:

Dear Mike,

How kind of you to be in touch. I really found being in your coronavirus diary project such a help. It was an

awful few months. But I am much recovered now and back into academic life albeit from home. I remain on

long term medication but as far as known I am cancer free and I have my hair back! And a beautiful

granddaughter growing up too quickly. I’m glad I have those journal entries as a record of how precarious

life can feel during a historic period of our time. I don’t really want to look back too often but they are in my

Dropbox for posterity. I am looking forward to hearing and reading more about your completed work, it will

be very important as a public record. Thank you for enquiring, I hope you are safe and well too and good

luck with finishing the project!

Warm wishes,

Hayley.