Wednesday, 28 December 2011

2011 29th Dec - More Cancer Faux Pas

A twitter bowel cancer fellow patient put me onto this link. Alison. I think unanimously we all said "hell yes that's how I feel" when reading. The author follows up with an article on what you should say. I tried to articulate my feelings a year ago but only received abuse because I was "obviously talking about how wrong x,y and z got it". Family fell out with me, yes the dying one (the people who saw themselves chose not to put things right quietly and think "thanks for telling me without face to face hurting my feelings")

I'm putting this out there because people keep getting diagnosed, 5 years of this crap and I've got used to a lot. Newbies into this adventure will be very raw and should be treated with more kindness. Comments in brackets and at the end are my own and accordingly more acerbic

You've lost so much weight. You look fantastic!
Thanks for noticing! My doctor says I'm malnourished.

You're strong and I know you can beat this.
Are you going to be disappointed in me if I die?
(also people will insist in fighting with me but how? It's in my body and I endure everything)

I read that kelp/almonds/asparagus have magical anti-cancer properties.
You should definitely eat some, then.

I know what you're going through.
Your grandfather's colostomy bag does not make you an expert on my medical situation.
(a classic - the number of people who know what I've been through because someone else had a totally different cancer even - I only know what I'm going through, my experience is unique to me, my family situation, my prognosis, my cancer)

That reminds me of when my dog/cat/gerbil had a tumor on her leg.
I'm sure that was heartbreaking for you.

God doesn't give us more than we can handle.
Define "handle."

(god is a non entity to me, I find it offensive you think he would hate me and my children this much should he exist)

OMG, I have/had cancer too! Let's be best friends.
Please stop weeping on my neck.

I know you don't want to talk about it, but I really need to.
Get a therapist.
(selfish, much?)

Cancer rates go up the less you exercise.
You're right. It's my fault I got cancer.

I am so impressed by how fearless you are.
Actually, I'm scared shitless, but I've gotten really good at hiding it.

(sneak round at 10am, 2pm, 10pm, 4am and hear me sobbing in bed/on sofa/in bathroom because I think no one can hear me. Who do you think I'm hiding it from and who am I protecting by taking this in my stride?)

I'm praying for you.
That kind of grosses me out.
(3people are, it does nothing for me and as I don't believe just let them get on with it. I know it's a waste -my attitude and strength got me this far)

I feel awful, too! I have such bad allergies this time of year.
You win.

Everything happens for a reason.
I'm beginning to doubt your intelligence.
(yes I've been a terrible person I need to die so the world can be relieved of my poison)

I had a friend who died from that same kind of cancer!
Wow, what a coincidence. Fuck you.

So do I, 2 friends Bec and Peter who were wonderful, beautiful people and I knew my path would follow their's that I am next from our group of Bum Bandits as we called ourselves half a decade a go. We met on MacMillan forums where I sought information from others. I diagnosed and staged myself from my endoscopy the day I actually was confirmed to have cancer and before lab results from hours on google images.

The others remain clear (and will remain so please) , if a little pleuritic (take more time off you loon and rack up more photo albums) and prone to hangovers in random European cities. Taking Caribbean holidays. They are really living, working, playing hard. Raising money obsessively - Peruvian treks, Killimanjaro, putting on cabaret events, the things I'd love to have done yet never got fit enough to do 3 peaks! Working stupid hours because they can. Trying to make sense of the fallout now 5 year sign off is here for them.

I'll be included in the 5 year survival rates (if I make it to June) weird isn't it, surviving can be pretty hard work.

They didn't have rectal, it was bowel cancer further up which gave them much better odds. I want them to go on living properly, working less in some cases. Relationships and babies when you've had cancer and chemo are possibly the hardest things to deal with and the deep hurt that never goes away with the potential consequences is something I'll not know.

I am thankful daily for the decisions I made - marrying and having kids so young. My life may be cut in half but I crammed it all in and can leave my fledgling adults behind knowing they can take care of themselves. More importantly I know I have the exact sort of loving, caring relationships with my children that I never had with any parent. All my sacrifices paid off, all my hard work, scrimping, working 2 jobs, never doing any housework when the kids were with me so it was all our time together. My only pain is that I'll not meet any potential grandchild and I adore babies. I have so much I'd like to teach them but then I read up on that too and had my plans for routines in place before I got to hold my first live baby. Both were happy babies and toddlers, slept 8 hours from 4 weeks, 12 hour nights from 3 months. I asked my mum during my last breakdown and depression if I'd ever been happy as a child. She replied, after a few moments too long "well I have got that photo of you smiling with a toy watering can". Says everything.

Virginia C. McGuire received her first cancer diagnosis when she was ten years old. She has heard everything on this list at least once.


Tony Songhurst said...

Nicely put dear know there will be fall out from what you have put and I am sure you will weather the storm as you did before. Cancer really does have a way of bringing out peoples true characters (if they weren't out already).

It is stunning how people think and totally and without question how selfish they are because even in YOUR darkest hour/s they still think how the cancer is affecting them.

On the flip side and probably lots less...It is stunning how cancer brings the best out in people :-)

You are a lil star.

Much Love

T x

Unknown said...

Well said. Raising a glass of pink to the BB's my love

Debby said...

I know that people say thoughtless things. But sometimes, just sometimes, a person does not know what to say, and they pray for you, because they can think of no other way to help, and in their heart of hearts, they wish to help you.

Loopy said...

Which is why people write articles like this (there is an awesome things to say to cancer patients which I'll post later to follow. Telling an atheist you're praying for them is quite odd, I have always said " if that helps you, great but it does nothing for me". Religion is dangerous ground for someone very ill so asking permission seems a better approach than telling someone you're doing it anyway. By at least having that conversation you can find out what they would like to hear. It's not easy either side of the fence but if we talk about places like this it will be less taboo and less of a minefield I hope. I would be mortified if I upset someone with saying the wrong thing but I'd want my friend to tell me it hurt.

Tony Songhurst said...

I am sure Lisa doesn't need me defending the points made - However I wish people would just look at them for what they are.

They are stated and agreed facts amongst cancer patients that may cause offence to people, especially 'terminally' ill people.

To be honest I am sure they are up for debate as is everyone's right to debate...however they are what they are and if they cause offence to someone who has their whole life of 20 - 70 years in front of them please accept they may offend someone with less that 1-2 years of life ahead of them - quite often that 1-2 years is not pretty and like on the tele where people get to do stuff they have always wanted...more often than not it is a constant stream of surgeries and poisons pumped into your body.

There is no doubt that people mean well...