Standing in the rain

The amazing power of something small and trivial, and its ability to create havoc with your emotions.

In my hand is a small rhinestone hair slide. It's pretty, sparkly and a symbol of everything I feel cancer has stolen from me; a stark reminder that I am damaged, scarred and hurting both inside and out.

A tiny thing but still big enough to allow reality to sneak through my defences and bring my world crashing down. I have lost so much and I am struggling, floundering, flailing around trying to find a way forward, a pathway through the darkness back to my spot of sunshine and warmth.

Where is that sunshine dammit? Why am I standing here crying in the rain?

The anguish I felt when I happened upon the hair slide was overwhelming. Somehow it really did sum up all that has been consigned to the past, because right now I don't think I'm ever going to feel comfortable and happy with the body that breast cancer has left me. Once upon a time I would have berated myself for vanity but it really isn't as simple as that. As a performance artist, how I look is an intrinsic part of who I am, both on stage and off and it is not the person I see looking back in the mirror. I ache for what is gone, not just because cancer rewrites the path of your life whether you want it to or not, but the fact that even the simple pleasure of putting a pretty slide in my hair is denied me. Well, yes of course I can still put a slide in my hair, but it is not the same because it doesn't add a touch of glamour or frivolity, all it does is emphasize the fact that my hair still isn't growing back properly and that it doesn't look like my hair.

So here I am.

It's raining hard.

I don't have an umbrella and there's no shelter in sight - it's going to be a long, cold night.

Sigh!

There are times when I feel like cancer is stalking my life just for the hell of it! Why? I asked my GP to look at what I thought were some areas of obstinate eczema only to be told that I need to see a dermatologist as they looked 'suspicious.' Suspicions that were proved correct because today I have a diagnosis of 4 skin cancer lesions one of which is stage two! Luckily none of them are life-threatening in the way that breast cancer is but none the less they all have to be excised, so I will have yet more scars to add to my growing collection of such things.

I've been worrying about all of this for a while and this is the main reason why I haven't posted in a while. I am going to remedy that from now onwards and will make the effort to post more regularly again. I have been involved in writing projects for other things and that's also taken up a fair amount of my time but all apart from one of those is coming to an end this week.

Distraction therapy

I have decided that I need some small projects to work on to stop me from worrying about the possible skin mets and what that might mean. As a result I made the decision to do two things; sign up for a course in jewellery making and join Blipfoto.

I have made various types of jewellery on and off over the years, particularly when I needed specific things for a dance theatre piece because I could tailor it to exactly what I needed and mostly it cost less too. I've done a lot of bead embroidery out of necessity either again for something that would have been hard to buy or to repair costumes I already own. I've never had any formal training in any of this though, so I thought a foundation course in jewellery making was a good place to start. I mainly worked with wire and that's what I want to focus on. The course starts in a couple of weeks at the local college.

Blipfoto is something altogether different.

This is a daily photo journal with a difference - you can only post one image per day. I've made a commitment (mainly to myself) to a 365 day-in-the-life-of project to record my recovery from last year. Some of it will be intensely personal and reflective but it will also feature an appreciation of the little things in life. It's an opportunity to share those moments that we usually take for granted, whether it be the first flowers of Spring, a pretty view or a piece cake bought as a treat. Although I'll have to be careful that there isn't too much cake buying! :)

You can follow my photographic adventures here - OndineBlue at Blipfoto

It's not funny (or easy) being a fashion victim!

What to wear and indeed, where to buy it, is a major problem for all women with breast cancer. Trying to find nice things to wear that also works with the restrictions of a post-surgery body has been something of a nightmare for me and thousands of women like me.

I have found the whole experience pretty horrible as it's been virtually impossible to find anything that works and is pretty. As a result I now live in t-shirts and jeans with all my pretty clothes either hidden in the back of the wardrobe or consigned to the charity shop. I can't tell you how many times I have walked around the high street desperate for something else to wear and then come home empty-handed and in tears.

Libby Page has made a very moving short film about this in the hopes of making the fashion industry more aware of this issue. In order to help make our voices heard please watch the video and share it. Thank you!

http://www.youtube.com/watch?v=yruRgvNDqsk&context=C306e559ADOEgsToPDskIcpVicJ0nuJQiQvWipcRZ9

It's been a while. . .

The truth is that having managed to jump off the merry-go-round once, I am now back on it again! The problems with my lung turned out to be radiation damage, not the best of news but not cancer either. However, now I am waiting to find out if I have skin mets! It's all go here isn't it???

I have been struggling with awful pain over the last few months due to a combination of things - soreness as a result of the original treatment, broken ribs and the icing the cake of course was contracting shingles on my treatment site. I've been taking  anti-inflammatory drugs but they just weren't helping so I am currently on an escalating dose of Gabapentin with Amitriptyline. During a trip to the doctor for a progress report I casually mentioned that I have a couple of patches of persistent eczema.  He took a good long look at them and pronounced that he's pretty sure that they are cancer! Now I am waiting for some tests to find out if it's common or garden skin cancer or skin mets.

Meanwhile I am planning some interesting things for 2012, regardless of the outcome of the tests! I have enrolled on a jewellery making course at the local college, something I've done on and off over the years but never actually taken lessons in it. I am looking forward to starting the classes next month.

Next on the list is to try and kick start my dancing by attempting a couple of hours of gentle practise each week. I'll never be able to return to how things were before diagnosis but it would be nice to be able to do something.

In May I'll be celebrating a milestone birthday and I've decided that just this once I am going to have a party to celebrate. It'll be a very modest affair - a meal out in a restaurant with my closest family. I've chosen to celebrate it for three reasons; it's a milestone, it coincides with the first anniversary of when I finished active treatment and lastly because I am grateful for the fact that I am actually here to do so!

2011 was a tough year and there were times when I never thought I get to the end of it all. Anything I do in 2012 is therefore going to be much easier by comparison!

So here's to a much better year!

Back on the Merry-Go-Round!

Yes, once again I am stuck in the waiting room! It's been almost two weeks since my first post-treatment mammogram and the ensuing wait for results is really starting to get to me! I think it's a combination of things but mainly the fact that of course that I'm still trying to deal with all those wretched anniversaries!

Your brain does very strange things when confronted with this sort of situation. Some days I am filled with dread, convinced that the cancer is back and worried about all that would entail but then I tell myself that I need to follow the maxim of 'no news is good news' and try to ignore all the negative stuff. The problem is that I seem unable to get a firm grip on the latter, so I end up not sleeping, being a pain to live with and weepy about the most stupid of things.

and whilst we are on the subject - what's with all the tears anyway???

I seem able to turn on the waterworks for the most ridiculous of things at the moment, which is extremely annoying. I am not normally a weepy sort of person but this last year has turned me into one and I hate it. I am revisiting chapters from the Cancer Survivors Handbook in a bid to try and make sense of it all and also to try and get things back under control.

and there's another thing that's become part of my world. . . control, or rather a perceived lack of it. I feel like someone else has control over me and my life. Not so much on the micro level but on the macro level, as in deciding what my future is and how much of a future I have actually got. I want to be in control again!

3 years ago I performed a number called "Doll?" which was very much about feeling like one's fate was controlled by another and what I want to do is emulate the end of that number where the strings are cut and the doll is free! 

Oh what I would give to have that freedom today!

Learning to live on the strange planet that is my new reality, is proving to be far harder than I ever thought it would be. I have lived my life following one adventure after another and this is the toughest 'adventure' of the lot!

Dealing with the now (and then)

I've been struggling over the last month as I try to turn my face to the sun instead of wandering around under a cloud. There is something truly crappy about being diagnosed at the start of Breast Cancer Awareness Month - a double whammy of dealing with the news/anniversary whilst seeing all the fundraising, media campaigns etc. Then there is November, the month in which I said goodbye to my breast and hello to the daunting prospect of chemotherapy and the knowledge that the cancer was worse than originally thought. 

It is tough work trying to navigate through all the anniversaries and my life seems to be revolving around them at the moment!

As I have said there is D(iagnosis)-Day, Operation Day, Results Day, First Chemo Day - the list seems never ending!

From talking to others I have come to realise that probably (hopefully?) the first couple of years are definitely the hardest to deal with because the pain and loss are still so fresh in one's mind. I really hope that this will be true because every few days I find myself thinking about what has happened in the past year and it's not how I want to live my life.

I want to move forward.

I know that I can.

It's just that finding the strength, the resolve to do so is much harder than I first realised. I want to feel truly happy again and I'm scared that I won't. I want, need, to find a way to compartmentalise my feelings about having cancer so that they run in the background of my life and are not the first thing I think about most days.

I need to spend some time looking for the sun in my life. 

I know it's there hiding, waiting to be rediscovered, and some day I'll wake up and there it will be. Bright, shiny and ready to warm me just like it used to do.