I’ve written about this for Insider: https://www.insider.com/being-organized-helped-me-through-my-cancer-diagnosis-and-treatment-2023-3
Having cancer as a freelancer requires epic organisational skills.
I like to think of myself as a pretty organised person. But here are some of the organisational challenges I’m currently facing.
Hospital appointments and visits
I’ve been to hospital five times in the last seven days. Three of these were planned: MRI-guided biopsy the other side of London; picc line insertion, and second chemo session. Two of these visits were not planned. I was reminded at the last minute that I needed a blood test before my chemo, something no-one had thought to remind me of when I was at the hospital the day before. Then I was worried about the skin around my picc line. I got it all sorted but this involved two long, sweaty bus trips across London on train strike days – one on the day after chemo. Oh, and my taxi to my actual chemo appointment never turned up. Thanks, Addison Lee. That was no fun either, having to rush for the bus yet again.
Managing childcare alongside all of the above
I need company for quite a lot of the appointments where they’re either doing something invasive or potentially imparting worrying/complicated information. If my husband comes with me and it’s not a nursery day, we need friends and family to help with childcare. They’ve been doing this wonderfully but it’s another layer of organisation.
And: guess what! Toddlers get ill too. My husband was meant to come to my first chemo with me, but our daughter had gastroentiritis. I’d lined up my dad’s wife to accompany me as a stand-in, and she came, and then the unit wouldn’t let her in because her name wasn’t on the list, but after I tearfully explained the situation they sorted it out.
Woozy after my first chemo, I was handed enormous brown bags of medication to take home. The schedule for the first cycle was something like this:
- 4 x pills once a day for first three days
- 1 x pill twice a day
- 1 x pill three times a day for first three days
- 1 x pill once a day
- Injections on days 3-10
Then, somehow, I’m trying to fit in work alongside all of this. What’s my availability? When will I need another surprise hospital visit? Will I be feeling well enough to do a specific task in three weeks’ time?
I’m determined to work and I am getting things done. Aside from the money, it helps me maintain a bit of normality. My clients are being incredibly supportive and understanding, which makes a huge difference, but all the same my organisational skills are being tested to the max. I’ve also got a huge surge in motivation, though. I want to work. I’m still writing my screenplay in the evenings. I’ll get through this.
How do you balance a freelance career with a cancer diagnosis? Let’s find out.
In late April I woke in the night with some pain in my chest. The next morning I felt a very definite lump: I went to the GP, got a referral to the breast unit, waited anxiously for a week, staggered home after a biopsy, waited anxiously for another week, went back to the hospital, reassuring myself that most lumps are not cancer, but being glad I was being cautious anyway.
It was a good thing I was so cautious: aged 37, I’ve been diagnosed with breast cancer. I’m over the shock now, and have had various scans which so far don’t show any spread beyond the breast. This is very good news, and they’ve told me it’s treatable. But it is present in a lymph node, and I’m facing at least a year of treatments including chemo.
I’ve decided to be completely open with my clients about this – I’m a pretty open person anyway – and obviously this is going to affect my availability for work and timescales. They’ve all been amazing, sympathetic, flexible and happy to keep working with me. I’m determined to keep working because I enjoy it and it helps me retain some kind of normality. The money is obviously useful too, but I’m in the fortunate position that we could manage without it if needed.
My schedule is crazy this week: I’ve got three appointments at the hospital on three different days, plus a genetics meeting, and I might have to do even more tests soon. I’m hoping that things get into a more regular schedule once treatment begins. Being freelance has definitely been helpful in terms of flexibility, although I expect that any of my past employers would have been understanding too. My husband’s private sector employer is being very supportive, which also helps a lot, as he either needs to come with me to appointments or look after our daughter if she’s not at nursery that day.
Weirdly, as someone who has experienced mental health issues, I’m feeling pretty OK psychologically. I was actually more stressed in January when our boiler broke while we were in the process of selling our flat. It makes no logical sense, but never mind.
I’m still enjoying things day to day but definitely feeling some grief about what I thought my body and my life was, and might be in future. The prospect of all the treatment is definitely filling me with trepidation but I know I’m in good hands.
The initial pain in my chest only lasted about 24 hours. I could have easily ignored it. I definitely feel that my body was giving me a message, and I’m so glad I listened.
Why are you on LinkedIn?
Recently I was running a virtual training session. As it drew to a close, one of the participants asked if she could connect with me on LinkedIn.
My answer was, “no, I’m not on LinkedIn because I hate it. It’s horrible.”
A few people laughed. I like to think they laughed because they recognised the truth in my words. There are many good reasons to hate LinkedIn:
- It provides novel methods of harassment. LinkedIn notifies you whenever someone views your profile. When an unknown man started viewing my profile every single day, it was unsettling. I blocked him, but if anyone’s going to obsessively view my online presence I’d rather not know about it.
- It’s a morass of productivity porn, much of it laughable.
- It’s essentially a timewasting device like Facebook that looks okay if your boss happens to glimpse your monitor.
- Like every other social media platform, it aims to privatise your relationships, your content and your creativity, but unlike other platforms you get very, very little of value in return.
I hope that my blunt response also helped to challenge the norm that you need to be on LinkedIn to have a credible professional life. You don’t. You might need to ensure you have an online presence elsewhere – such as your own website, or other social media, if that’s your thing – but pretty much everything you can find on LinkedIn can be found somewhere else. Job postings, contact details of key executives, interesting articles. My freelance career is going perfectly well without any help from LinkedIn.
Moreover, as a trusts/major gifts fundraiser I never had any useful connections that could further my work or my career, other than recruitment consultants. And I had other ways to contact recruitment consultants. I never added donors or contacts at charitable trusts; it wouldn’t have felt appropriate, as those relationships belonged to my employer, not to me. There would have been literally nothing I could have gained from a connection, other than making things slightly more awkward than before.
I completely appreciate that not everyone is prepared to go social media cold turkey like me. But I hope I can make you think again about LinkedIn.
Go on: name one thing that LinkedIn gives you that you couldn’t get somewhere else.
Can lockdown give victims of bullying a break?
The #NotJustNCVO hashtag on Twitter, inspired by a recent report into bullying at NCVO, is compelling reading. It has walloped me with an emotional punch and brought many of my own unpleasant memories of bullying and harassment to the surface. I’ve had enough experience of bullying in our sector to last me a lifetime, the culminations of which led me to the edge of a breakdown.
Happily, things have got much better for me and I’m now enjoying work as a fundraising consultant. Like most other fundraisers, I’ve been working from home since March, but because I was doing this anyway, the change hasn’t felt as dramatic as it does for others. It has made me reflect, however, on the impact that lockdown might have on toxic workplaces and the impact of the worst perpetrators.
I’m sure there are plenty of terrible impacts. People might be feeling more isolated than ever before.
However, if I were working for an abusive employer now, how might lockdown give me new coping strategies?
Workplace bullies operate on the margins of formal structures
I’ve experienced bullying and toxic environments in more than one job. Some of these situations arise through incompetence, laziness and a desire to please the boss. I’ve noticed, however, that the most devious bullies take pains to exert their power outside of the formal structures of meetings and emails.
Looking back, I can see how one manager went to great lengths to avoid witnesses and written evidence. During our supervisions she’d tell me, angrily, to stop taking notes. I meekly complied, assuming this was some clever management technique to improve my memory. I’ve concluded it was nothing of the sort: it was simply a way of avoiding accountability.
The worst things she ever said to me were said in a meeting room behind a closed door.
I eventually learned. I made sure never to close her office door when I had a meeting with her; we were in earshot of other desks, and this seemed to help. I wrote up notes as soon as I’d left the room. In my final few months at that job, I actively avoided speaking to her at all. I don’t think she even noticed, even though she was my manager and ought to have been scheduling regular catch-ups. In this case, her avoidance of accountability worked in my favour.
The structured, opt-in nature of Zoom calls could potentially help victims. It could be much harder for a manager to take you to one side and intimidate you with the force of their presence. And if they’re bad at remembering to schedule catch-ups? Maybe you could also conveniently forget.
Workplace bullies create cliques
Perhaps I’m naive, but I’ve frequently been astonished when colleagues have opted for defending terrible, harmful people and decisions over the wellbeing of their staff. I suppose lots of managers like a quiet life. I also think that there is a tyranny of “niceness” in our sector which hides healthy conflict under a coating of passive-aggression and pits colleagues against each other. I’ve met plenty of flying monkeys in my time.
Obviously, if you’re working from home you can’t possibly know which Zoom meetings you’re being left out of, but on the plus side, you’re not forced to watch everyone go out for lunch together without inviting you. You won’t hear those strategic background conversations which are intended to make you feel small. Those opportunities for clique-building have been stymied.
Workplace bullies mess with your sense of reality
It took me a long time to realise that I was a victim myself. Even now, memories of conversations come back to me which I only see now were hurtful and offensive.
Some environments are so toxic that you can’t fully appreciate how bad they are until you’ve had a chance to step away and gain perspective.
I hope working from home has helped some victims to do this. Maybe now, you’re appreciating the break from a poisonous office environment. Maybe the #NotJustNCVO hashtag has prompted you to rethink some of your recent exchanges with colleagues. Has someone said something to you that made you feel an enormous sense of shame? That’s wrong. That should never happen at work. Look at it again.
Are there changes we can advocate for? I have some ideas.
And keep a diary. Of everything.
Are we ready for the change that is coming?
It’s the easiest thing in the world to assume that things are going to carry on as they are. Major, cataclysmic change is a thing of the past.
I think that anyone who was under that impression has been put right by the pandemic, the Black Lives Matter movement, and various governments’ responses to both. It turns out that we can completely reconfigure our economies and our ways of living if we decide to, although this particular set of circumstances is probably not much fun for most people at the moment.
The great irony is, though, that we could have seen these things coming if we had looked carefully enough. Scientists were issuing warnings about pandemic risk well in advance of 2020. The fury and grief felt by black people was in full evidence for anyone who bothered to listen. And we all know climate change is under way, along with a mass extinction event, although many of us probably have our heads in the sand about how bad these could get.
This isn’t a new or original observation, by any means. George Eliot acknowledged the risk of complacency back in 1861 when she wrote Silas Marner:
“The lapse of time during which a given event has not happened, is… constantly alleged as a reason why the event should never happen, even when the lapse of time is precisely the added condition which makes the event imminent. A man will tell you that he has worked in a mine for forty years unhurt by an accident as a reason why he should apprehend no danger, though the roof is beginning to sink.”
What interests me is how the charity sector will respond to all of the above. Most of us are aware that climate change is likely to cause suffering to many of the communities that we serve. Not only that: how will it affect investments and mortgages on properties that may be at risk from, for example, flooding and wildfires? What will be the knock-on effects to our donors? How may they choose to prioritise their giving in future? And how can we think about all of this when we are dealing with today’s challenges?
I’m afraid I don’t have any definite answers for you, but I do believe that we can’t deal with each challenge separately. Although bad things can happen and compound in their severity very quickly, the same is also true of positive action. More black representation on the boards of charitable trusts may help to prevent small, black-led charities shutting down in the face of Covid-19 pressures. Listening to communities that are most vulnerable to climate change will lead to better prevention and mitigation. Finally, charities that live their values fully by divesting from fossil fuels will not only safeguard the planet, but probably also see a better return in the long term.
The path to “doing the right thing” can be fraught with difficulty, however. It was heartening, in many ways, to see Action on Hearing Loss announce that they are closing their head office and embracing home working. This will be welcome news to many, but will perhaps cause problems to those who do not have the space or facilities for home working (a problem that the charity has acknowledged and has said they are actively examining). The move to increasing accessibility can create accessibility problems for other groups.
In some ways this reminded me of RNLI’s move to a fully “opted-in” marketing policy when GDPR came in – a decision that they had to reverse. The desire to do the right thing is admirable, but hasty implementation can lead to a host of negative side-effects.
As Myles Bremner writes at the Institute of Fundraising, charities need to be agile and bold in order to adapt to the challenges we face. He highlights the importance of “clear, honest and transparent communications with stakeholders” – to which I’d add: make sure you know who all of your stakeholders are, include all of them, and remember that listening is a critical part of communication.
Enormous, epoch-defining change is happening right now, and I think that more is on the horizon. We can’t know what the future holds, or how to meet the challenges it brings. Or maybe we can, if we ask the right people.
Social media can be a lifeline, but don’t let it be your only way of relating to people, especially now.
I’ve written plenty about my decision to leave social media in November 2018, and I’ve found the benefits have been more than worth it (I’ve left Facebook, Twitter and LinkedIn, but I do use WhatsApp).
I felt a twinge of almost-regret when I started my freelance career, and I felt another twinge a few days ago, when the coronavirus crisis and the accompanying restrictions hit London. Would Twitter give me a sense of fellowship and constant communication that I’d miss during self-isolation?
I was able to answer that with a “no” very soon. Having skimmed a few Twitter profiles, I felt the familiar sense of rising panic. The fake news, angry responses to politicians (some justified, some not), and endlessly recycled jokes weren’t doing anything for my sense of wellbeing. I can generate plenty of anxiety by myself, I’ll have my unreasonable reactions to politicians in private, and I can definitely come up with bad jokes independently. (Sorry, husband.)
Twitter has its defenders and I’m sure it can do a lot of good, but I’ve questioned the balance of positive vs. negative attributes before. Talking to other people should make you feel better about yourself and the world, especially at a time like this. I have to wonder if the supermarket shortages have been exacerbated by social media fearmongering. As someone who suffers from anxiety, it has been educational to see how damaging fear can be when taken to extremes. It hurts others.
Right now, I’m craving simple human-to-human interaction. I’ve decided to try and speak to a friend, colleague or relative every single day of social isolation. I only call a couple of close friends regularly; calling a wider range of people will help to keep these relationships going and possibly deepen them.
If you can, make contact with your neighbours. I’m lucky to live in a cul-de-sac where I know most of the other residents at least by sight. As I look at my dwindling (and modest) stash, I remind myself that having people nearby who will look out for you is worth more than infinite rolls of toilet paper.
Stay safe, everyone, and keep in touch.
How many charities are covering up bad behaviour with NDAs? Let’s make them tell us.
I was dismayed to read the recent allegations against Alzheimer’s Society. The charity is accused of spending as much as £750,000 on NDAs with staff (Alzheimer’s Society denies the allegations). NDAs, or non-disclosure agreements, typically involve a payment to an employee on the condition that they do not disclose specific information about the organisation to anyone else.
NDAs do have some legitimate uses: no charity or business would want employees or ex-employees to share trade secrets with competitors. It’s arguable, however, whether NDAs used to cover up allegations of bullying, sexual harassment or other unethical behaviour are reasonable. I’d say no, especially because other notable users of NDAs include Harvey Weinstein, and the arbitration service Acas agrees with me.
Acas argues that using NDAs in this way “stops businesses from tackling the underlying issue” and that they “should not be used to hide a problem or brush it under the carpet”.
The open secret is that bullying is endemic in the charity sector
There is, sadly, an acknowledged problem with bullying in the charity sector, which is all the more distressing due to our supposed emphasis on ethical values. The issue has been documented in detail by ACEVO in their report “In Plain Sight”; I’m aware of anecdotal evidence from others; and unfortunately I’ve been the victim of bullying and discrimination myself.
The ACEVO report makes several much-needed recommendations regarding the need to improve workplace cultures and whistleblowing procedures and clarify the role of the Charity Commission. However, many of these assume good faith. I don’t see how they will make much of an impact on the charities that most urgently need to change – for example where a powerful senior leader is the perpetrator and unlikely to change their behaviour, and where trustees may be unaware or willing to turn a blind eye.
The ACEVO report also includes powerful examples of the impact of workplace bullying. It can destroy mental health, lead to breakdowns, create physical health issues, negatively affect personal relationships, and cause suicidal thoughts. I will not repeat their evidence here, but I urge you to read the report.
NDA reporting should be a mandatory part of charity accounts
It is currently impossible to know if, or to what extent, charities use NDAs to cover up complaints of bad behaviour. Perhaps it’s not a major problem in our sector, but I think this is an area worth exploring; the cost of ignoring it is far too high.
I believe that charities should be required to include a line in their accounts for NDA payoffs where a complaint is involved, summarising the total amount and the number of NDAs made.
It is clear that allegations of bullying and large payoffs are potentially highly damaging to charity reputations. I can’t imagine that many donors would be happy to find out that their money was being used to silence staff.
By forcing charities to report a number, cultural problems will quickly make themselves starkly known. The reputational risk of inaction will become untenable.
I often wonder if trustees are aware of what’s being done in their name. If they’re not aware of a bullying or otherwise toxic culture, then this would focus their attention on the issue. And if they don’t care – perhaps because the perpetrator is known to get “good results” – it would force them to take action for the sake of their charity’s reputation.
The ACEVO report found that bullying was often an “open secret” in the organisations where it occurred. Well, my view is that if everyone already knows, the knowledge should be shared as widely and frankly as possible. This would lead to some extremely uncomfortable conversations, but would ultimately result in a happier, healthier and more effective charity sector.
Is social media worth it?
I read with dismay the Social CEOs survey of female charity CEOs, which revealed a widespread problem with trolling. Much of this is sexist, and much of it leads to mental health issues and concerns about safety.
The survey only had a brief mention of racism. I expect this could have been identified as a major issue if the survey also had capacity to explore this, not to mention the intersectional issues when sexism combines with racism.
I’m sure that most of these female CEOs feel that they need to be on social media to be effective at their jobs. I’m aware that many charities view outreach to beneficiaries and donors as essential.
However, there’s no avoiding the fact that social media does increase vulnerability. I’ve experienced abuse on Facebook which made me fear for my safety. Thankfully this was a fleeting experience, but the impact of it has stayed with me.
I have to ask: is social media worth it?
I’ve been social media-free for a year
One year ago, I went cold turkey on Facebook, Twitter and LinkedIn.
I made that decision while on maternity leave; since then my life and career took an unexpected twist. Six months after returning to work I left my job and launched a freelance career.
I had a brief flash of uncertainty when I made the decision to go freelance. Would I be missing out on opportunities via Fundraising Chat on Facebook, or the Twittersphere?
In short, no. I’m relieved to say that so far, my new career is going pretty well, and I don’t regret my decision to leave social media. I feel as if I’ve proved my hypothesis that one strong professional relationship is worth more than a hundred Twitter followers.
I still do check the Twitter feeds of a few people, including charity sector leaders, which is possible to do without an account. Observing social media trends and conversations as an outsider has been an interesting experience (and I get a little bit of perverse pleasure out of using Twitter in a way that isn’t intended by its creators).
Many charities have ethical donations policies. If we applied the same standards to our social media providers, would we use social media at all?
Trolling on social media is one tiny part of all these platforms’ myriad issues . I’m sure you’ve heard all the main arguments against it: social media leads to mental health problems. It destroys our ability to concentrate. It polarises points of view, driving communities apart. It spreads fake news and undermines democracy. It violates our privacy, selling our data to the highest bidder, and the major platforms persuade us to buy mildly helpful robots that spy on us.
Facebook is possibly the worst offender; at time of writing they have refused to ban political ads that spread misinformation. And if that wasn’t enough, the HEATED newsletter recently reported that despite espousing a commitment to an environmental agenda, Facebook has donated $20,000 to Mitch McConnell’s re-election campaign. McConnell is one of the most rabid climate deniers in the White House.
Again, do we really feel that the benefits to us as individuals, and to our charities, really outweigh the above? These concerns are being widely discussed in other sectors, but I haven’t seen much evidence of them affecting our ways of working in the charity sector.
Despite that, when I’ve mentioned to charity peers that I no longer use social media, they immediately understand and I never have to explain myself. Deep down, most of us are aware of the issues.
What is the role of privilege in who chooses to use, or not use social media?
Obviously, if all women left social media that would be a dreadful situation. Men, particularly white men, are far less likely to suffer abuse and are therefore in a position of privilege when using these platforms.
Conversely, however, it can often take a certain amount of privilege to feel able to leave social media, depending on one’s individual situation. I recognise that in myself; I have the experience and contacts that have made a social media-free career viable. Someone just starting out may not feel able to make that choice.
For those who feel they’d miss out on connections and interactions, however, I’d like to ask: what’s the opportunity cost of social media? Who could you be talking to if you weren’t on Facebook? What could you be reading or writing?
Most of all, I’d much rather monetise my ideas by writing articles and pitching them to publications that pay, like Third Sector, instead of providing free content that enriches Twitter.
Maybe social media works for you. But if it doesn’t – if you have that niggling feeling inside you that doesn’t feel quite right – you can have a perfectly good life and career without it. Maybe an even better one.
And you can still enjoy LinkedIn’s most hilariously irrelevant posts.
It’s time for the sector to show real leadership on climate change
I’ve written for Third Sector on why I think all charities – not just those focusing on environmental causes – should join the fight against climate change.