Tuesday 13 December 2016

The Pollyanna Positivity Fallacy

Recently, I've become increasingly distressed with 'peoples' insistence on positivity! (When I say people, I am generalising but I have recently come across this quite regularly)

People want to hear, that your cured, you kicked cancer's butt and you did so with grace and decorum.

They really don't like to hear that someone is living with active cancer or has been told it will most definitely return.

Telling someone "Oh no! Don't think like that; be positive!" is not helpful. It's not negativity; these are bare facts, and telling someone to be positive, completely invalidates their experience.

Living with an active cancer or knowing it will return, sets your life on a whole different trajectory! I'm not saying, that it has to hold us back but what I mean is, that's a whole other emotional world to work through.

Cancer throws up so many new questions and emotions for anyone. And as a young person, living with an active cancer/knowing it will return just jumbles those questions up even more. Do I date? Do I tell this person about my cancer? Do I allow this person to love me? Do I have kids? Will my illness return/get worse, just as I'm starting to put life back together? Can I even plan ahead? (I'm writing from a young person's perspective but I'm aware that these issues come up for older adults also)

When you tell us to be positive, you not only invalidate our experience, but you also ignore what this diagnosis means for our young lives, and the decisions or considerations we need to make.

It is a complete fallacy telling someone with such huge life changes going on, to be positive. This is is our reality.

I have felt quite stung recently, when those I do not know very well, have said such things. I understand why they say these things but it doesn't make it any more pleasant to be on the receiving end of! It's difficult for people to hear, and by saying 'be positive', they get to keep the rawness of reality at arms length.

So I guess , as a young person,  next time someone says something similar to "be positive!", don't allow this to discredit that muddle of emotions and big questions. This is your experience, not theirs and you are entitled to all of those feelings, even if that other person doesn't want to hold the space for the truth of what you are telling them. It also doesn't mean that you are not positive or you are pessimistic.  And even if you are, for one moment, not being positive, you are absolutely entitled to that!

And if you're one of those people that persistently touts positivity, please have a wee think about what you're really communicating to that other person when you suggest mindless positivity as a way forward.







Sunday 15 May 2016

15/05/16

I've been feeling really awful all week, which is why I haven't posted.
I'm mainly completely exhausted and lacking a proper appetite.
I'm appreciating having the weekend because it means I don't have treatment and I get a bit of downtime.
I'm currently trying my hardest to psych myself up for this coming week but giving up is certainly never too far from my mind....

Monday 9 May 2016

Fraction One, Take Two

I'm back, having not blogged for a long time. I haven't blogged, mostly because I didn't know what to say any more and I haven't really accepted my diagnosis. That sounds ridiculous, not accepting something when I'm having all these procedures done to me but I don't feel real and I still don't quite believe my cancer diagnosis.
Anyway, I'm back tonight because after a lot of consideration and preparation, I'm restarting radiotherapy and I'm determined to get to the end of the seven weeks this time. So, take two...
Today's treatment went ok but I had to be in the mask for half an hour as they needed more images of my head. This is quite difficult for me because I'm claustrophobic. The heat outside made the radiotherapy department sweltering, and in turn, my head was boiling beneath the plastic mask! 
I don't feel much when I get the radiotherapy except a strange, metallic smell and taste when I get the beams to my head, and a slight heat when I get the beams to my spine (although I might have imagined that one).
I had a syringe driver put in this morning, which is a special machine that delivers anti-emetic medication subcutaneously, for 24 hours. I was also given 3 oral medications that should help with the sickness and nausea. 
We're now 2 hours since my first treatment, I've eaten and I've not been sick so I'm hoping that means that all of these medications are working!


Tuesday 1 March 2016

1st March 2016

Hello all,

I've not been blogging of late as I've been having a bit of a meltdown! I'm a bit better now though and  feeling more positive.

Together with my neuro-oncologist, I decided to give radiotherapy another go. This is deeply unpleasant and claustrophobic but somehow, I must dig deep and find something within me to make me get on the table every day for 6 weeks. I'll be admitted to the hospital this time because I was so sick with it last time. Hopefully they can manage side effects better this time and I might be able to get home.

Anyway, this post was about showing the practicalities of radiotherapy. This YouTube video is similar to how I receive the treatment however, I am lying on my front, with the masked strapped over the back of my head because I'm having craniospinal radiation - which is radiation to the full brain and spine.

https://www.youtube.com/watch?v=eN2qOr1qjJQ

My radiotherapy planning begins next week so I'll have to power on through somehow, to get through the claustrophobia!