It’s 5:20am on Saturday 24th September 2022 as I’m writing this. I’ve been up since 2:45am as I’ve been virtually attending a funeral today.
How the hell did it come to this?
Not long after I moved to the USA in early 2020, I got the news that one of my friends from my Saudi days was seriously ill. She’d had some symptoms and the doctors had finally told her it was cancer. Thus started 2.5 years of treatments, sickness, many acts of kindness from myself, others and the friend in question. There was also a lot of observation of human nature… thus this post.
If you do have a friend or loved one going through a serious illness, then I’ve some tips for you.
1) Be normal
The tendency is for a lot of people to go off the rails. They get overbearing, smothering as they react and process the news. Don’t. Be normal. They’ve enough news and change to process in their lives, a touch of normality will go a long way.
2) Don’t smother them
Technically this is also the first point. Some will try to “wrap the person in cotton wool”. They might be ill, but they are still a person with agency. Don’t deprive them of that.
Asking how they are all the time gets tiresome from one person, it’s bloody exhausting when it’s extended family and friends. Imagine how you’d feel if half the people on your phone contacts list messaged you EVERY DAY to ask how you are. It’s concern overload, and there are more productive ways to do it.
3) Medical advice
Yeah about that. Don’t.
Your loved one is likely getting good medical advice already from people who are actually trained medical professionals. It is very likely you are not a doctor, and you’ve never played one on TV either. If you are a doctor, it’s equally likely you did not study the speciality of that persons illness.
Let the professionals handle things. You can occasionally enquire about the drugs and the treatment plans but don’t suggest actual courses of action. That’s not helpful for your loved one and it’s irritating for the doctors.
4) Watch out for con artists
And holy shit, are there a LOT of con artists out there. They pray on your desperation, and your loved one’s desperation. We all want to survive but these censored due to legal advice pray on you, your bank account and best you can hope for is the treatment is ineffective. The worst case ones will kill you, and it’s almost a perfect murder for the con artist. They got your money, you’re not here to complain anymore.
The infamous one is https://en.wikipedia.org/wiki/Amygdalin , sometimes sold as Vitamin B17. It doesn’t take much digging to find that it’s not a vitamin and your body processes the chemical into cyanide. Yep, it’ll slowly poison you.
I’m not a doctor either but cons like this really bother me.
5) Prepare for side effects
Cancer drugs cause various other things. Notably hair loss is the best known but skin irritation and UV sensitivity are not. Being irritated by your own pillows while trying to sleep is no fun.
So following up on point 1, there exists various companies and charities that can help here. Example: For my friend, I got a couple hats from https://www.compassionhat.com/ (They’re based in South Africa but similar organisations exist in most countries) and that helped a lot.
There’s likely also to be effects on personality too. Your loved one is going through the stress of a diagnosis, then the hell of some of these treatments. Irritability is likely. They’re probably going through the stages of grief, just like you. Be prepared, and be understanding.
There’s likely to be personality changes at the end of life too. None of that is their fault. Be cool. There’s a multitude of reasons why this happens so I won’t attempt to go into them other than .. see point no. 3. I’m not a doctor and I don’t play one on TV.
(It’s reasonably well known I do creative writing and film stuff on the side of my day job. It’s good for a psychological perspective on characters, which is why I feel I can say this.)
6) You are NOT in control
Accept the fact that you are not in control of anything. Treatments, visiting hours .. even that person’s ultimate destiny.
Forget it. Not going to happen. There’s no magic wand you can wave.
Especially true if you’ve not seen them for a while or not particularly close to them. You’re going through your own stages of grief, so trying to take over is a dick move. You’re pretty much going to irritate everyone around you and especially your loved one. See 1 and 2.
I managed this and at work with the stuff I do, I’m a goddamned control freak.
7) Talk to others who know the person
I’ve recently made friends with others who knew my friend. Supporting each other works better for you all than anything else at this time.
8) Get advice from people who’ve been through it
I talked to a good friend, the UK author Lucy V Hay as she is a survivor. She was the one who recommended that I get the bandanas for my friend and that was one of the best pieces of advice I got from anywhere. Later on I extended that advice to the ultimate in comfort for people with easily irritated skin: silk pj’s. I got my friend’s pj’s from https://www.oneboutiquestore.com/ based out of Cape Town, South Africa.
9) Spend time with them
The most important one of all. They may beat whatever illness it is, but also they may not and you need to be prepared for that. Best way to prepare is to spend as much time as you can with them.
You’ve likely guessed by now my friend was in South Africa and I am currently in the USA. This is where taking advantage of time zones and internet messaging comes in handy. My friend and I used to regularly send WhatsApp messages and photos and voice messages, but there would also be phone calls as I drove to work on a morning and calls in my evening after she’d had breakfast.
You make the time where you can. That’s what worked for us.
Eventually that wasn’t enough, and I did spend a sizable chunk of cash flying out to Johannesburg. Go see them. Spend as much time in person as you both can stand, remembering no. 1 and no. 2 above.
Talk to them. Clear the air. Discuss the things you’ve always wanted to but never did. You’ll regret it if you don’t.
Get pictures. Record video messages. Make sure it’s all saved and backed up. It’ll help you enormously later on if the worst occurs. (BTW you can make exports of Facebook Messenger and WhatsApp messages. Keep those safe too.)
10) Hope for the best, prepare for the worst
Modern illness treatments have come a very long way, but they are not perfect. Hope that your loved one will recover and have many more years. Prepare yourself mentally for if they don’t.
False hope is dangerous. So is false pessimism. It’s a difficult balance.
If you succeed in doing this, tell me how.
11) Donate wisely
It’s a sad fact that charities are not all created equally. Some are really good at what they do. Some are really good at creating awareness, rather than actually helping and some are notorious for suing other charities. Yeah.
Sometimes it’s just better to donate directly to places like research hospitals but that means tracking them down. There’s a better way.
It’s a rating and donation site for charities. You can browse through and select based on preference and on rating. Donate to organisations that do actual good, and if you’re in the US or UK be able to claim tax perks for doing so.
As an aside, it’s better to regret things you did than things you haven’t done.
Ok that’s the points over and done with. It’s now 6:48am here in the SF Bay area.
Here’s a typo corrected version of the eulogy I wrote for my friend Tracey on Thursday 22nd. I had all of 25 minutes at work to write it, and it didn’t help that one of my colleagues broke his coffee grinder in the middle of it.
The “Fake Husband”
I met Tracey back in 2015 when we were both working at the same University in Saudi Arabia. She was concerned that I was going to get arrested for taking photos on a tourist trip we were both on and that’s how we met in the middle of Old Town Jeddah. She was one of the very few who kept in contact when my contract ended four months later.
So from this humble beginning, I became better known as the “fake husband”. This started according to my WhatsApp messages on 19th September 2020. I’ve known others who have had cancer, and it was the UK author Lucy Hay who told me during her treatment your skin gets really sensitive.
I got Tracey a couple of head caps that she really liked. Although I got scolded a bit when she found out how much I spent on them. (I bought in US dollars, it was fine!)
Later on during the treatments, I figured to bring her spirits up a bit more drastic measures were needed. This time, it was pyjamas. Silk ones. Exact quotes from Tracey when she found out:
“Bridal party sleepwear 🤣 “
“Dude….are u nuts!!!! Those prices are way crazy for PJs!!!”
“Dude….I can’t wear stuff like that”
The conversation quickly then changed to a “you go to sleep. No YOU go to sleep” one which was typical for us considering I was messaging at 10:22pm and it was early morning for Tracey. Sorry if I woke you up Peggy …
This over the course of the next few months this turned into Tracey saying various things to me, and I was replying with a very sardonic “Yes Dear”. So she nagged more, and I pretended to be the hen pecked husband and most of the time the humour was well received.
New Year 2021. Tracey made a throw away comment about picking an anniversary for us and I had an idea. I looked through my files from my Saudi days and located the exact date we met. June 26th 2015 and thought … ok. Game on.
I ordered an anniversary card and had it sent to Tracey for that date. Except I ordered it a two weeks in advance having been warned about the South African Postal Service, and also for safety sent it to Tracey’s mothers address since Tracey was staying there mostly. I didn’t say anything, but just waited. I didn’t have to wait long, but the card was late arriving.
Cue the phone call from Tracey where she said her mother had seen the card and was asking when she’d got married and why hadn’t she said anything. Then some of her friends had arrived before she could hide it, saw the card and all got very curious. A lot more explaining than I’d intended was required. Whoops! Well I was amused, and Tracey did eventually get the joke of it all. I think her friends thought I was nuts.
That’s the beginning of the “fake husband”. I repeated the process earlier this year but post never arrived. Foiled!
Of course Tracey got the last word in. She told all her friends about her “fake husband”, but then didn’t tell me. Jet lagged in O.R. Tambo and hearing that was an experience. From her mother and brother.
I hope this has at least shed some light on the joking and laughter we shared. We weren’t afraid to do things like this to each other. The Winnie the Pooh cushions and the giant stand fan that randomly turned up with zero warning. The wonderfully knitted jumpers that were slightly too small for me … She was generous as well as wickedly funny. She improved me and that’s worth more than anything else in the world.
At the end of the day, the phrase we came up with was:
“She nagged. I didn’t listen.”
This summed up our fake marriage but our very real friendship. I’m glad I got to meet Tracey, I’m glad as a result I got to meet most of you in this room and I’m glad she was a significant part of my life for as long as she was.
Bless you Tracey. Rest well.