At the risk of perhaps upsetting people....I had a jovial conversation with Susie yesterday about some comments that I find upsetting. We genuinely were laughing at people's insensitivity and possibly at the same time congratulation ourselves on being superior beings. (In my case that's probably wrong because my mouth often engages light years before my brain and I've got a razor attached to my tongue, so I'm sure someone, somewhere has compiled a list on things I've said that have upset them, but this blog is about me), so......here's a few corkers:
They make some lovely wigs now.
You'll look great bald as you do now.
You beat it before, you'll do it again.
We'll fight it together. (This usually from people who never text, call, email, visit etc.)
Hope you feel better soon.
Are you OK?
These are probably personal to me, and my reaction is often dependent on how I feel emotionally and physically when I receive them, also in what medium - if face to face, mid conversation then again my reactions vary.
My desired responses on the third day of chemo would be:
So f*cking what, that is NO substitute for MY hair which I loved, my eyebrows, eyelashes, pubic hair. They don't last long, you can't get them free, it's a nightmare finding one to suit. You can't open a hot oven door or cook over steaming pans with your average NHS wig - steam and heat ruins them. Wigs do NOT cure cancer or make me feel physically better. Yes, having one will marginally increase my self esteem, I hope, when I finally give up on what hair I have left. It will enable me, with a LOT of effort replacing brows and lashes and make up, to not feel like a freak, or look like I have cancer from a distance. For that I am grateful but it really is not going to change my life.
No I bloody won't look great bald, my hair makes my face look much better when it's long and styled the way I know suits me. I will look like a bald woman, like I have cancer. Which I do. Every time I pick tens of hairs off my clothes many times a day, brushing out hundreds every day it makes me cry. I don't look great now, mostly I look drawn, pale, dried out, black shadows round my eyes and ill. I am still managing to put make up on and conceal all of those things quite well I believe, when I leave the house. So, actually I thank you for complimenting my make up skills if you think I look great now!
But still, expecting me to look great bald is just asking too much of me, I don't need the pressure.
I did NOT beat cancer last time - it didn't go away, the other tumours just were too small to be seen until this year. I can NOT beat it this time, my CANCER SPECIALIST says so, unless you have a secret cure you'd like to share with me? It's in my lungs - that means I will die with those tumours in my lungs. Fact. Unless of course I can get back into daily meditation, yoga, consuming my body weight in chlorophyll daily and manage to convince the universe to make them go away.
We'll fight it together - I beg your pardon, but does that mean you'll take half my tumours? Half the drugs? Half the pain, or the side effects? Will you give me half of your life expectancy? What can anyone but ME do about my situation that constitutes fighting it? I don't really like the fighting analogy myself, there's enough of a scrap for ownership of my cells between those who are welcome and the mutants, I'd rather assist my healthy cells than fight the mutants. Fighting is so negative (says she mentally punching people on the nose).
You hope I feel better soon? I should clarify - from people who know the cycle, that I start to climb back up to an increasingly lower level of "normal" by the Sunday following chemo - or those who know I've just started taking new drugs for another side effect and specifically relate the hope to that situation, then, thank you. To my actual blood relatives who clearly don't understand the concept of incurable and have no idea still, of anything I've been through the last four years, preferring to delight me with tales of their own health issues (OMG, you had to have 3 blood tests in two months, you poor, poor thing, I have at least one needle in my arm every week, I shall probably be back to injecting myself with growth hormones daily every chemo when my neutraphils drop, but yes, on hearing my news, I realise how selfish I am not to consider your awful situation at having blood tests)...to them I ask, how do we share the same genes? How do you get to live in this bubble where you don't understand how awful this all is for me and those closer to me, yet I have to try and make you feel better because you are now feeling so bad, so upset and so guilty about my situation.
No I am bloody well NOT OK. Which bit of me, which aspect are you enquiring about anyway, could you be more specific please? Or did you think I just got cured overnight?
There are a couple of people who can ask me this question and will never elicit anything like anger. That's because they talk to me every day, they know my moods are all over the place, and between us, OK, means "coping". Also, when I tell them how I feel, they discuss it with me, if I want to, offering suggestions or viewpoints I might be able to adopt which will improve the situation. E.g. "today I just can't see the point in continuing with the chemo, pain aside, I felt well before, I was going out, I had my hair, I was a healthy weight, my clothes fit me, I could drive around, hold a conversation, be fun to be with. Now I just exist, dragging myself from day to day and for what? To possibly live another few months? What if I never recover sufficiently from the chemo to enjoy those few months?" Hayley said "I thought you were doing this and rewarding yourself with our trip to Rome?". Oh yes, I forgot I'm aiming to revisit Rome! Instant increase in positivity - small, but an increase. Happy thoughts of my last visit are now in my head. I just need reminding of specific events with unconfirmed dates I can definitely look forward to, not the ones I've planned that chemo will ruin because I'm too sick to go, the ones after chemo.
I have exaggerated things somewhat here, otherwise it would just be dull, but there is a fair bit of truth in how "things people say" can be meant to offer support and encouragement but actually do the opposite.
Enough of that whining, but seriously, if you are the cancer free one in a conversation, just bite your tongue and discuss the weather or a TV programme to assess their mood and have a think about what you're really saying or asking before you go ahead? If you're genuinely upset or concerned for them, just man up and say it, but back that up with a solution. Just don't dwell on how hard it is for you too much eh? We don't need the extra guilt.
"I wish you didn't have to go through this, and it upsets me that I can't help you, but would you like to go and see a film, or hire a DVD if you're not up to leaving the sofa, visit somewhere just for a change of scenery, I'll drive?"
Lady D offered to help me do some decorating, but after hearing of her lack of knowledge of undercoat and gloss paint..........I politely declined :0)
If you offer to do something, make it specific, make a date for it and DO it. Don't mention something you might do on a day that never comes, leaving someone clinging to that small thing to look forward to and have yet more hopes dashed.
Don't ask about what needs doing, just do something, anything. Take control, don't make a patient feel like a burden, or a patient, just do it as if it's perfectly normal - don't make a big deal out of "being helpful". Really, if someone turned up to your house with some home made cooking (in my case that's a big ask, but we're not all wheatfree vegan freaks) when you had a bad cold, would you be offended or turn it down? If a visitor just disappeared and waved the mop over your kitchen floor whilst they boiled your kettle to make you both a drink, when you had a bad cold, would you be offended, really? What about if someone just popped round for 10 minutes with a bag of fruit, some yoghurts, a loaf of bread, pint of milk - just so you don't run out and don't have to drag yourself out when you're feeling a bit rough, then buggered off again to let you sleep. I doubt it very much, and being ill from cancer or its treatments is no different. In fact, we should do that more often when people do have colds and minor illnesses just for practice. I include myself in that, I've delivered flu remedies and the odd loaf of bread, I did once drive over to Susie's and construct a healthy salad for her when she'd been in hospital with a bad asthma attack (looked like she had two black eyes, scared the hell out of me, and that was when she'd been released) because I know how hard it is to feed yourself when you're ill.
My cousin, bless her, is possibly the best friend or neighbour you'd want in these situations, I asked her to pick up a bunch of carrots when she visited, maybe some Morrisons version of frazzles (high in protein). She turned up with a stack of reading material and half a cupboard of very carefully selected "treats". And she lives over an hour and a half away. She even managed to hide her disappointment when I got irrationally scared about sugar content in the treats and dismissed them rudely, later realising they have the same ingredients as my raw vegan truffles and therefore totally suitable.
We could all do more, small things to make other people's lives that bit better. These days I'm limited to being chatty and friendly to shop or hospital staff, or letting drivers out in front of me in heavy traffic. I've seen so many rude patients, rude shoppers and there's just no need. These people see lots of people all day, why not try and put a smile on their face when you're interacting with them, or at least be polite? It really does make you feel better yourself you know. (Have I evened up my karma yet following my initial bitching?)