Part 7: Ma ma ma my Carona

Chemo vs. Covid-19: what it feels like to be one of the ‘vulnerables’

The ultimate stand-off.

Like most people, I didn’t really take the old Corona scare that seriously at first. I remember Whattsapping my folks, trying to work out when would be best for my mum to come back from Australia and take care of me for a couple of weeks and give Steve some breathing space – and I was almost taken aback when she said that 'of course, Corona might make travelling completely untenable’ (or words to that effect). I honestly thought she was just being over dramatic (Sorry Ma).

As other countries started shutting down around us, I eventually became concerned, but I really don’t think I realised the true impact this would have on people like me until I got a stomach bug following a fairly routine, but vital, visit to hospital – at a time when hygiene was already at the top of everyone’s mind. I was lucky – I was wiped out for a couple of days. My friend Anna, who I have met 'virtually' since having cancer – we were introduced via an old school friend who thought we could support each other somehow (Anna has just finished treatment for stage 3 bowel cancer) - was hospitalised twice during her treatment because a stomach bug she picked up from her kids turned into gastro and her chemo-ravaged body could not fight back on its own.

And even though I knew all about how, among other things, chemo kills off your white blood cells (the cells we use to fight infection), even though I knew about all the longer-term side-effects and possible damage chemo can do to my body, the realisation that it was actually happening, and was not just a bullet point on a list anymore, was always going to come as a shock. Because, as well as my over-susceptibility to pick up anything going and my hands looking like those of an 80-year old, my period is late.

I had debated whether or not I would go back on the implant following my egg retrieval – my first instinct was an emphatic ‘yes!’ Having to deal with periods on top of feeling awful seemed unnecessary. But the more thought I gave it, the less keen I became. After all, your period is your body’s way of letting you know that things are working as they should. So I decided that I wanted to have that signal to rely on, a signal to say ‘it’s ok Suze, you’re doing ok’. Because speaking to Anna had made me hopeful. Although she was on Folfox (a slightly different chemo regime to me), it shares the big nasty ‘Oxaliplatin’. Luckily (or unluckily if you ask Anna), her period carried on stoically throughout, so I wondered if mine would too – and my fertility fears would thus disappear. And maybe it hasn’t stopped yet completely; maybe it is just ‘a bit late’, or it’s the anxiety of these uncertain times; but whatever the reason, not having my period has compounded my acceptance that chemo is already taking its toll on my body. And I need to start facing up to the risk of Covid-19 to people like me with compromised immune systems. I mean, Anna was hospitalised twice with a sickness most people breeze through: even in more ‘normal’ times, what would be a mere inconvenience for most, can be a life sentence for someone on chemo – and we now have a pandemic to deal with as well.

And then Boris made his big announcement – ‘Many more families are going to lose their loved ones before their time.’ Just like that. And the message I heard was – just deal with it, it’s going to happen, people are going to die, but not the important ones; to save the economy we’re going to have to make sacrifices. But he wasn’t talking about him or his loved ones; he was talking about people like me and people like my dear Dad back home in Australia, who has Parkinson’s Disease.

I appreciate that it’s really hard to know what to believe – I mean, following the announcement of Boris’ initial ‘herd immunity’ strategy, I read two articles within ten minutes of each other, both published in the Guardian, both offering opposing views.

The first was trying to explain the rationale behind ‘herd immunity’, the other was completely derailing it as a nonsense and possible mass eugenics. I have to admit, after reading each I nodded to myself and muttered, ‘well, I can kind of see why they might think this is an ok response…’

However, I kept reading more articles, more viewpoints, listened to more experts and very quickly came to the conclusion that this strategy goes against everything the World Health Organisation and the rest of the world were doing and asking for. And more poignantly for myself, whatever way people tried to swing it, it saw the ill, the elderly, the vulnerable as cannon fodder in its wider purpose.

Herd Immunity won’t work for so many reasons; Covid-19 is an unknown strain of the virus (despite the rubbish many people are blithely sharing throughout Facebook – no, that bad cold you had last December was not it) - we don’t know how it will react in the long term and people are being re-infected already – click here to read what an epidemiologist has to say on the matter. How can we ‘protect’ our most vulnerable whilst leaving the rest of society to get ill? Professor Raina MacIntyre, the head of the Biosecurity Research Program at the Kirby Institute, UNSW Medicine, explains the mathematics around achieving herd immunity. She explains that for Australia, for example, to achieve R0 (herd immunity), 61% of the population would need to be infected and recovered. She states: ‘An infection rate of 61 per cent takes us into the catastrophic range of epidemic scenarios.’ And Australia’s population is significantly smaller than here.

Boris’s initial plan suggested that the ill and vulnerable self-isolate, leaving the rest of society to keep making the money, get infected, recover and carry on.

I have been self-isolating since Monday (although due to the nausea caused by my chemo, apart from an essential hospital visit, I haven’t left the house for two weeks). But what about my carer? Even if I am kept isolated (from everyone: friends and family – for 12 weeks at least), he has to go foraging for us to survive. What if he comes in to contact with the virus at the supermarket because other people aren’t behaving sensibly? Because other people are ‘carrying on’ as normal? If he gets infected, I will get infected. If I get infected, the outcome is not so great.

And, corona or not, I cannot avoid my life saving hospital visits – I must go in once a week to have my PICC line flushed and cleaned to stop infection (which my body would not be able to fight, making things like potentially fatal sepsis very likely), and of course, I must have my chemo – you know, so the cancer doesn’t get the upper hand. No matter how hard I try to keep myself safe, I am still reliant on everybody else taking this seriously and making sensible decisions.

The hospital is doing everything it can to minimise risk, but it will still be there. We are screened for symptoms before arriving, we have to wash our hands on arrival and we are no longer allowed to be accompanied by anyone. This means that Steve can’t come with me for my next administration of Oxaliplatin. And this worries me – I have had meltdowns on arrival for each cycle now; I guess prior to my first cycle because I was scared of the unknown and then prior to my second, because of the initial trauma Oxaliplatin caused my vein and also, perhaps ironically, the fear of knowing what I was about to endure. It’s safe to say that Chemo has hit me pretty hard – it makes me very ill for about a week (days 1-8), and then I am left balancing the need to stay active with not getting rundown and overcome by other secondary illnesses and infections. During my low immunity phase (days 7-14) we are advised to pretty much self-isolate anyway – and that was before Covid-19.

And now, on top of everything else, I can’t even look forward to my ‘one fun thing’ per cycle (see Part 6 of my blog). I will not be at the wedding of one of my dearest friends on Saturday. I can’t even attend my weekly yoga class. It is highly likely that I will have another meltdown before my next cycle that begins next week, but this time I won’t have anyone there to support me through it.

So my anxiety levels are pretty high right now. But not just for me. I mentioned earlier that my Dad has Parkinson’s Disease. He is also 72. The main cause of death for people with Parkinson’s Disease is pneumonia. My dad has had pneumonia before; Parkinson’s causes difficulty in controlling the muscles used to swallow and cough, making it easier for food to get stuck in the lungs and also harder to clear them. He has to be really careful about what he eats, avoiding things of very small particles like some cereals, and eating is often accompanied by a lot of coughing as inievitably things go awry.

Almost all serious cases of Covid-19 develop pneumonia. So I am really worried about my Dad. More-so than myself. And, maybe selfishly, I am really worried that he will get ill and I will never see him again – because he is in Australia, and I am here. On the other side of the world. With no possible way of making it home to say goodbye. Or even attend his funeral. And I am angry that the media would report his death as someone with 'underlying health issues', completely dehumanising him. They will not report that he was a respected Associate Professor of Biology, or that he was an amazing partner, father and grandfather, or that his death would leave three generations grieving a loss that came too soon. And I am sad that he will read this blog post, and see me thinking so morbidly when I know that he will be thinking positively, as he always has done, even when faced with the realities and cruelties of Parkinson’s. But, I guess, it is times like these that force me to face up to realities of being so very far away.

And this is why I get so upset by some of the posts people share on Facebook and the amount of unsubstantiated, unverified, and often anonymous rubbish that is being bandied about as ‘fact’ – even now that Boris has u-turned on his original stance and started taking more drastic action (some would argue a little late in the game).

Here’s a couple that I found particularly frustrating – although the possible choices were endless!

Number 1: I mean really – a conspiracy theory? Do people actually believe that our capitalist government wants industry to fall and the pound to crash because nobody can go to work or go out and spend their money? Do they really think governments want small businesses and the self-employed to go bankrupt?

Number 2: And this one? I mean, the symptoms mentioned do not really even align with those of Corona virus? And even if it was Covid-19 – just because it was mild in this case, does not mean it will be that way for everyone – normal flu still kills people…

Number 3: And my final example – firstly, where has this statistic come from? There is nothing to verify that it is accurate, or how it has been calculated. How could we know the survival rate of a new virus that is in the midst of infecting people exponentially at alarming rates? We don’t know the end result. Even if we were to accept this as ‘fact’ – 1.8% of 60 million people is still over 1 million people. Everyone would know of someone who died. Over 1 million deaths is serious. Over 1 million deaths is a hell of a lot of loved ones.

So, from where I am sitting, as one of the 4% of vulnerable people in the UK, I can’t help but plead: please do not share posts like this. They are not helpful. It is easy, I imagine, when you’re not one of the 4%, or one of the other multitude of vulnerable people that rely on the NHS and services and face an uncertain future if those services are strained to the enth degree, to forget to think beyond your own lives and experiences. But at this crazy time, you must. We all must. We must imagine what it’s like to walk in other people’s shoes to ensure that we all get through this thing. We must not downplay the seriousness of what we are facing, maybe not for you personally, but for people like me, who, if they contracted this virus would became too ill to continue the cancer treatment that is saving their life, or might not recover at all. Or people like my Dad, whose body may not be able to fight back this time.

In her article ‘Chemotherapy and the coronavirus threat — my immunity levels mean you need to care about COVID-19’, Australian journalist Mary Lloyd muses over how strange she found it to hear her ‘possible death openly labelled inconsequential by public figures, commentators and even by some of (her) friends’.

She writes: ‘Some remark that coronavirus has "only a 1-4 per cent" fatality rate, while others implore that everyone relax because "most people will only get mild symptoms”.

While these statements are broadly correct, there's a callous confidence that comes with knowing you're part of the 96 per cent who will survive an infection — instead of being among the potential "four-percenters" who might not.’

And like her, I know that ‘us potential 4 per centers’ are depending on the rest of society to be ‘vigilant and take sensible precautions’; our survival relies upon the hope that complete strangers who may well not be badly effected by this virus themselves, ‘care enough about potentially thousands of vulnerable people who (will be).’

She further echoes my feelings (more eloquently), writing of how when ‘people spread blithe messages about the fatality rate or flippantly comment about easily shaking the disease off, there is a risk others will take a similar careless approach.’

And, alongside the ‘deniers’, ‘a careless approach’ includes those panic buying. The news is full of stories – in Australia people have had punch ups in stores, old ladies have been mowed down by trollies in order for someone more able to claim their apocalyptic prize. Facebook is awash with personal accounts of being unable to source nappies, or paracetamol. My recent woes revolve around pasta, crumpets, anti-bacterial surface spray and plastic free toilet wipes.

In the first week of my chemo cycle I am incredibly ill. I cannot keep anything down and ant-sickness meds don’t really do much to help me. However, it’s important that I try; not just to keep up some strength and maintain my weight – but nausea is worse on and empty stomach and both the steroids and the tablet form of chemo that I take, Capecitabine, (alongside the intravenously administered Oxaliplatin) must be taken on a full one. The only foods I can stomach long enough for the drugs to be absorbed into my system are crumpets and plain pasta. And the shelves are bare. My next cycle starts on Friday; I wonder how I will get through?

I also rely quite heavily on anti-bacterial sprays because I am so susceptible to bacterial infections – I do not have the white blood cells to fight back and anything that causes further vomiting and diarrhoea and increases my dehydration, effects my ability to recover even more. Again, the shelves are bare.

Having bowel cancer and the side effects of chemo also make me reliant on wet wipes of some kind; without which other complications develop, like piles or fissures…it’s not pleasant but it is reality. I try my best to source a plastic free product made by Natracare. It is normally only available in health food shops or on-line. Obviously I cannot get out to any health food shops so I logged on to my usual supplier last night and low and behold - they are completely sold out…everywhere. Well, not everywhere. I did find a few packs for sale on Ebay, but the normal price tag of around £2 had skyrocketed to £7.56 per pack. I don’t know if I even have words to describe how I feel about people who are attempting to profit from this.

And it’s not just supply and demand that is out of whack and feeling the strain. Yesterday my darling Steve went to collect my prescription for Dalteparin – these are daily injections that stop me from having another pulmonary embolism; chemotherapy thickens the blood, and that alongside enforced stillness makes all patients susceptible to potentially fatal blood clots. But lucky me, because I have a predisposition to clotting, I am allowed to take daily blood thinning injections – only to find that my prescription repeat hadn’t been processed. This was the result of an NHS that is already feeling the strain – at my GP Surgery, staff are off sick, self-isolating or caring for others and new procedures to ensure the safety of those remaining are timely and constraining. Even when my script was fast tracked at the insistence of my Steve, we found that yet again the cupboards were bare. They could give me one injection for yesterday, and today we have to go back and hope that they were able to source more.

Today I also return to the hospital to have my PICC line cleaned and flushed and I am feeling really anxious about it. My chest feels tight. I am anxious about coming in to contact with people – remember you can be a carrier long before any symptoms appear - and I am anxious about the future of my treatment. If the strain on the NHS gets too much – if we are unable to ‘flatten the curve’ quickly enough – I may have to face the reality of my treatment being suspended. And as horrendous as chemo is, the alternative is not an option. Maybe I am being fatalistic again – but in this, the worst year of my life, it is hard not to be.

I am no expert, and I am not going to pretend that I understand the ins and outs completely, although I do try to read widely. But I am going to take it seriously, because I’m not going through all this complete bollocks of surgery and chemotherapy, all these ‘worst days of my life’, this worst year of my life, to be killed by a bleeding virus – or to have my treatment suspended because said virus has made me too ill to cope with chemo, leaving the cancer free to take over my whole body, unchecked.

And I implore everybody else out there to take it seriously as well. And not just for people like me and my Dad, but for those essential workers that will not be able to self-isolate, and need us to do as much as we can to slow the spread so they can keep on helping us through this.

The next few months are going to be tough for all of us - but surely possible death is the ultimate price - and one we should want all people to avoid? Nobody deserves to die before their time; not even those people with underlying health conditions.

I just wish we had a Prime Minister that had made vulnerable people in our society feel valued and needed from day one – because we are: we are mothers and fathers, sisters and brothers, sons and daughters, grandmas and grandpas, aunts and uncles, friends and lovers – and we have a huge amount to offer. I wish we had a Prime Minister, that on day one, instead of telling everyone to deal with the fact that people will die, that we will ‘lose loved ones’, told everyone of how we needed to come together to protect and keep safe those most vulnerable, to make sure that as few of us lose loved ones as humanly possible.