What not to say to someone who has cancer

I have to start this post with two disclaimers, as follows:

  1. Although it seems like I’m mainly slating what people have said to me over the past 6 weeks, in a rather mean way – for the most part (with one exception), everyone says what they think is best in a difficult situation.  No one, I’m sure, actively sets out to say the wrong thing, and I appreciate everything everyone has said, because they made the effort to say something, even if it was the wrong thing.
  2. Everyone in this situation is different – what I find tooth-grittingly irritating, someone else may find more comforting than a cuddle with a baby panda.  So use your own judgement, depending on who the person is and how well you know them.  For example, the first time my big brother saw me after my lymph node removal operation, he greeted me with ‘alright, scar-neck?’, which is perfectly acceptable from a sibling, but I might have found a little surprising from, say, a colleague at work.

Ok, so those niceties out of the way, onwards with a small sample of what people have said to me so far, and why I hate them.

  • ‘You poor, poor thing, I am so sorry for you.’

This may not be the case for everyone, but personally, pity makes me want to throw up, dramatically, while yelling ‘DON’T FEEL SORRY FOR ME, I’M NOT THE ONE WHO THOUGHT THAT HAIRCUT WAS A GOOD IDEA.’  I understand that you think you’re being empathetic, but it’s not the right vibe.

Instead of pity, try positive, but empathetic, statements, such as, ‘what a thing to have to go through – I’m here for whatever you need’, or ‘you can do this, I totally believe in you’, or ‘I understand how frightening this must be but you’re young and fit and healthy and you’ll get through this without a backwards glance.’  Basically, think cheerleader-style positivity, but maybe stop short of the pom-poms and yelling ‘GIVE ME A C! GIVE ME AN A!  GIVE ME AN N!’ and so on.

  • ‘I can’t imagine what you’re going through.’

In my opinion, this is literally the crappest thing you can say to someone having any kind of difficult time, and to which the only logical response would be, well, TRY.  ‘I can’t imagine what you’re going through’ – what, you want me to paint you a picture?  (Which would be of very little use, frankly, because anyone who knows me knows that my sketching repertoire is limited to cartoon cats.  Maybe I could try and explain a cancer diagnosis through the medium of cartoon cats – that would keep me busy).

Anyway, what I’m trying to say is that it’s rubbish, and it all comes down to empathy.  I’m the kind of person who can’t leave a solitary baked bean in the bottom of the can in case it feels left out of the toast party that all its mates are going to, so I don’t really have any issues empathising with other people, but I know some people do.  If you are that person, genuinely take 10 minutes out of your charmed life to put yourself in someone else’s place and try to imagine what it might feel like to go through something so frightening that you keep wondering whether you’re actually trapped in a horrible nightmare and you’ll wake up any minute now and regret all that cheese before bed, and then think about what you would like someone to say to you in that situation.

  • ‘What will you do about the mouth ulcers/constipation/other miscellaneous hideous side effect of chemo?’

This one is genuinely well meaning, but not helpful.  Everyone reacts to chemo differently, so everyone gets different side-effects, and you don’t know what they will be until they happen to you, like some kind of fun Pass-The-Parcel, but in hell.  If your cousin has had chemo and found that it gave her an uncanny ability to smell sausages from three houses away, that’s all good, but it’s unlikely to happen to the next person you know who has chemo, so save it.

If you feel desperate to share a story about a close friend or relative’s experience with cancer treatment, choose a positive one, such as, ‘my mum had chemo last year and now she has the all clear and is in perfect health.’  I’ve heard enough scary stuff from the doctors, I don’t need any more from you.  Which leads me perfectly on to…

  • ‘My friend died of terminal cancer.’

This isn’t something I would have ever thought I would have to advise against saying, but someone genuinely cornered me at a party not long after my diagnosis and spent half an hour telling me in some detail about how her friend died slowly and painfully of a rare cancer.  I kid you not.

No amount of me saying, ‘I’m so sorry about your friend, but my situation is quite different because it’s been caught quite early’ could shut her up and I was on the point of wondering if I could muffle her by shoving a passing canape into her mouth, or headbutt her in the nose and make it look like I tripped over a waiter when fortunately someone else caught my wide-eyed desperation and rescued me from the most inappropriate conversation I’ve had since Dr Ruth’s hen do, where the multiple doctors gathered regaled everyone with tales of things people put up their bums.  I joke, but this genuinely upset me (the inappropriate cancer story, not the things up bums stories). Unless you have the social skills of Osama Bin Laden, you shouldn’t need to be told this.

  • ‘I don’t know how you cope.’

Well, actually, I just spend the day dragging myself around the house, wailing at the sky, tearing at my clothes and yelling WHY GOD WHY.  I think this statement is unhelpfully unempathetic, again – obviously, I cope like you would cope, or anyone else, by taking one day at a time, having the support of my friends and family and just getting through it.  And by slagging off what people say to me online, obviously.

The bottom line here, is to think about what you would want someone to say to you in this situation and then say it to the person who’s going through it – even if it’s the wrong thing to say, at least you’ve given it some thought, rather than just opening your mouth and letting the words drift out.  One in three people will get a cancer diagnosis at some point in their lives, so one day it may be you – and if you’re lucky enough not to experience it, you sure as hell will know someone close to you who goes through it at some point.  Empathy is key.  Don’t have the social skills of a sardine.

And, if all else fails, offer practical help – cook a dinner that can be easily heated up and drop it round, offer to give lifts or go to appointments, send a card saying you’re thinking of them, think of practical gifts you could give.  Lucy, a friend of mine, sent me a mindful colouring book and some felt tips and it has been one of the most useful, thoughtful and therapeutic things anyone has given me.  Thank you, Lucy.

And finally, if you are the person going through it, and someone says the wrong thing, memorise and use this phrase judiciously;

‘Thank you for your concern but I’d prefer not to talk about it – I’m sure you understand.’

No one is likely to argue with that, and if they do, you could use this other phrase, which is just as handy, but a bit shorter, and should preferably be delivered with a polite smile:

‘PLEASE FUCK OFF NOW.’

Sorted!

 

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PET scans – or the time I was radioactive for six hours

After being diagnosed with Hodgkin’s lymphoma, nearly everyone I spoke to told me I ought to write a blog, to which my stock response was, ‘yeah good one – you don’t think I have enough on my plate right now with the constant doctor’s appointments, and the endless Googling and the general fear?’

As it turned out, they were all correct, and I did want to write something down, as it turns out, so I thought, why not write something useful for everyone else?  Being diagnosed with cancer comes with an almost constant barrage of information, medical terminology and more general fear (a recurring theme here, so much so that I’m considering shortening it to ‘GF’ just to save time) so I thought I would write about my experiences and the process in general in a non-terrifying way, for the next person who has to go through this.

I was going to start the usual way, at the beginning, with the initial scan that led to the diagnosis, but that was so hideous and unexpected (I thought I’d damaged my neck during circus training – and I realise that sounds like I’m joking but I’m not) that it gave me a panic attack, followed by a comedically inappropriate attack of the hiccups, from gulping in all the air during the panic attack, and the embarrassment that caused is still resonating through me now, so instead, we will start with the PET scan, because the wonder and awe at medical science that it inspired in me is similar to what most people would reserve for a ride on the back of a woolly mammoth.

So, the PET scan.  NOTE: if you are reading this as a medical professional, you may want to skip ahead, because I was attempting to explain this to a friend at brunch yesterday in front of another friend, Ruth, who is a doctor, and I noticed that my non-medical, layman terminology was causing her to grip the base of a candle tightly until her knuckles turned white, and when I asked her if she found me attempting to explain a PET scan painful, she said, ‘No, I’m just…looking at this candle‘, through gritted teeth, so I assume my explanation was not science-standard, but when you have cancer everyone has to be nice to you and not call you a complete berk, like they usually would.

ANYWAY.

A PET scan comes after your initial cancer diagnosis, and it is to find out how far into your body the cancer has spread.  SPOILER ALERT: mine was only in my neck and upper chest, which is what they had found on the initial ultrasound, so that was a relief all round, what with me having spent a week imagining the doctors telling me I was ‘riddled with it’, and then wondering if a doctor would actually use the term ‘riddled’, being as I am a human being, and not a woodwormed sideboard.

So, the scan, which was one of the oddest experiences of my life so far – and I have shared a dressing room with a 10-piece mariachi band in togas and sombreros…which is probably another post for another time.  They kick off by asking you to sign a form that confirms you’re definitely not pregnant, because they are going to inject you with a radioactive substance, at which I laughed, because I thought it was a joke.  IT WAS NOT A JOKE.  The idea behind the PET scan is that they inject you with a radioactive dye, containing glucose.  Cancerous cells use up twice as much energy as normal cells, so as the dye makes its way around your body, they will glow on the scan.  That is literally the most non-scientific explanation going, but it is, objectively, totally fascinating that medical technology can do this.

The bit that I found completely insane was the preparation – I had to fast for 6 hours beforehand, then when I arrived at the hospital (note – I had this done privately so I’m not sure how the NHS differs), put me in a private room and injected me with a radioactive dye (the nurse did this, and then said to me, ‘now you are an atomic bomb!’  This, unlike before, was a joke).

I was then warned not to go near pregnant women or children for 6 hours afterwards because I would be radioactive.  This time, unbelievably, not a joke. The entire experience wasn’t unlike stepping into an early 80s kids cartoon, and I kept wondering whether to use my superpowers for good or evil.

Because of the dye showing up which cells are using the most energy (I can literally see Ruth shaking her head in despair right now at this poor excuse for an explanation), you have to stay very still, with absolutely no stimulation, in a room, alone, for an hour before the scan.  This means no phone, no reading, no radio, no company.  So, to put this in context, you know you have cancer, you are waiting to find out how advanced it is, and all you are allowed to do is sit in a room alone for an hour, hungry, and thinking about this.  Like, I’ve had better afternoons.

This was a little internal dialogue that I had with myself:

‘I need the loo.  The nurse said it was fine to go to the loo so I should just get up and go.’

‘But what if the energy used going to the loo makes the cells go crazy and they think I have cancer in my legs and my arms too?’

‘But I need to go.  Maybe the effort of holding it in will make my bladder area go insane and then they’ll think I have bladder cancer.’

‘But the nurse said I should stay as still as possible.  Did this cover loo visits?  Should I try and move very slowly to the loo, in the manner of someone performing interpretive dance?’

‘Maybe I’ll just hold it in.  But what if thinking about needing the loo is making my brain work overtime, and then they’ll think I have brain cancer OH GOD.’

In the end, I went to the loo, and no one told me I had bladder, brain or arm and leg cancer, so that just goes to show that one can overthink these things.  But in my defence, I’m not sure what else I was to do, in a room, alone, without even a copy of Hello for company.

Anyway, after I sat for an hour (and I did actually drop off for a bit so it wasn’t all bad), they whacked me in a scanner for about half an hour – which looks like a half circle and not like an MRI full body scanner, which I was relieved about because I am deeply claustrophobic, probably from being ‘hidden’ in the blanket box by my elder siblings when I was small.  Thanks siblings.

They they had to put me back in again because typically, I had moved while they were scanning my neck – the most important bit.  After that, my boyfriend collected me and I was free to go and wander the streets of Marylebone, radioactively, intoning ‘WATCH OUT BABIES – RADIOACTIVE WOMAN IS COMING.’  (Not really, although only because my boyfriend wouldn’t let me.)

I had my scan on a Friday and had the results on Monday morning, before an operation I was due to undergo, to remove some lymph nodes for further analysis.  Again, this is private, so I don’t know how long it takes to get the results on the NHS, but either way, you don’t get them immediately.  As I said before, the results of mine were the best possible outcome – it hadn’t spread further than we knew, and for that I feel extremely fortunate.  Now I have three weeks of fertility treatment and then four months of chemotherapy to look forward to, so no doubt there will be more substandard medical explanations here to look forward to very soon.