I seem to be finding it hard to write about my feelings and the underside of what’s happening for me emotionally. The medical stuff is maybe upsetting or interesting to read (I’ll leave it to you to decide), but it’s straightforward, clinical, scientific, factual and therefore quite easy to write. And it seems to be providing useful information for friends, family and other MM patients. But the emotional stuff is messy, hard to define and put into words, even to get my head around, but this is what I most want/need to write about. It might be because I am not having an expected response…?
Recently being called “Pollyanna” by one friend made me stop and take note. She thinks that I come across as someone who thinks this is the best thing that’s ever happened to me? Maybe I am. And maybe it is… Am I really allowed to say that? :S
Well, I have no heavy responsibilities, no children, no job. I don’t need to work or even be seen to be looking for work, which I find extremely liberating. I have very little stress, I decide each day what I want to do and have total permission to rest if I don’t feel up to doing anything, which I think we could all do, but we generally don’t let ourselves, do we?
I’m getting a lot of positive attention from my friends and family, who are being very supportive, making contact by letter, email, phone, Facebook and actual visits. They seem to want to look after me, wish me well, make me laugh, send me useful, funny or interesting books, bring me plants, flowers, food and even lottery tickets.
So far, almost no one has said anything really stupid, awkward or offensive about cancer or dying. Bizarrely, when I told my next door neighbour about my disease (a few days after being in hospital when she fed my cat for me), she said “Oh, you should have told us…” Excuse me… Told you what? When? Why? It’s not like we’re best mates! And I’ve only just found out myself! But that’s about the only weird moment I’ve had. And she does feed my cat when I go away, so it’s worth keeping her on my side.
Across the road, another neighbour is about one year post-treatment from breast cancer. She’s been through chemotherapy, radiation, hair loss, surgery and come out the other side looking quite fit and very positive. She’s back to cycling and running and taking trips away. She has been supportive in a sensitive, understanding and unobtrusive way.
Early on, I chose to remove friends from Facebook who weren’t really friends… just people I knew, or friends of friends. Before making my announcement, I wanted a sense of having ‘my team’ behind me, so they needed to be people I actually wanted to communicate with. This is also true of my real-life friends and in other parts of my life.
Having a tendency to hoard and procrastinate, de-cluttering has never been easy for me… I mean what if I might need/want that jacket/shoe box/candle/piece of useless IT equipment/old postcard… at some point? 😀
I live in a small semi-detached house and I may not get past 65-70 years old, so what better time to clear out, refresh and take the remaining 10-15 years by the horns… once I can see what’s important and what’s not?
It’s so easy when life is just moving along as normal to think, “Oh I’ll sort that out one of these days”. The days go by and until you need the space or are pushed by some external force, you just don’t do it and it doesn’t really matter. But I am aware that the less physical clutter in my house and emotional clutter in my social life will help me feel less cluttered in my head and more able to get things done which I want to do, spend time with people I want to and be creative if possible.
I seriously don’t have a strong sense of time running out, which would make me feel quite pressured or sad, but more a clear stretch of time to make best use of and push myself past my normal procrastinating tendency. I mean who can guarantee 10-15 years? And they’re not guaranteed at all for any of us… so I do look both ways when crossing the road!
Just writing this feels strange, like I’m supposed to be struggling, scared, depressed or falling apart. But I’m not! Mostly, I’m just being in the moment… not something I could easily achieve previously, but it seems so easy now… I have permission. I strongly recommend that you all give yourselves permission too if you can, whatever your circumstances.
I have an Android phone, with an application called The Mindfulness Bell. I can set a start and end time and then it simply rings at random moments during the day, giving me the chance to take a moment out from what I’m doing and just breathe, look around and appreciate the present, notice any aches and pains and notice the good things like sunshine, a smile from a stranger, a nice meal, whatever. I love it… it makes me smile each time.
Pollyanna? She’s so goddamn annoying… all that positive energy. I wonder if I am doing it to soothe the discomfort of those who care about me? Certainly, I don’t wish to upset friends and family, but I want to be straightforward about what’s happening and I do not want to have to “look after” the people in my life. I am busy looking after me! I encourage anyone who’s struggling with the reality to contact a specialist nurse at the hospital or visit http://www.myeloma.org.uk. I have been advised that they are both very helpful.
The big voice of society’s judgments in my head says “How can a diagnosis of an incurable (I do question that word!) cancer be a positive experience????” So, I found myself wondering if my emotional response is a form of denial?
While I’m not feeling too ill or in too much pain and while I can cycle, walk, drive, receive visitors, go to the cinema/theatre, go on holiday, consider voluntary work, maybe take on a foster dog, etc. perhaps I’m not taking the whole thing seriously? So, I checked with a close friend and my specialist nurse on how they think I’m dealing with it. The verdict was that I seem to be approaching the whole experience very positively and realistically. I’ll go with that for now!