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.

One Year On

One year ago today I heard the words I was dreading - 'I'm so sorry but it's definitely cancer.'

As I look back over my shoulder I can see that long tunnel of blackness that has been the past year and I can still feel the cold touch of it on my soul as the darkness reaches out to try and engulf me once more. I find myself staring blankly, numbly, unable to move as the shadow of fear stretches out.

I am frozen.

Frozen in place like a fly caught in amber.

I want to move but I'm stuck here in that place between the life that was, the life I want and the life that is my new reality.

Is it really all happening to me?

My body tells its own sad story. Maimed, scarred, battered and beaten, a shadow of its former self. An awkward child, difficult to love but begging for affection looks back from the mirror each day. When will I learn to love her?

Has the cancer really gone?? Is it hiding, stalking me, waiting to pounce again?

Questions I ask myself almost every day.

Questions I cannot ignore.

Questions no one can answer.

As I try to turn to face the future, I know I have challenges ahead. I try to take the first steps forward, reluctantly because my heart and soul are filled with dread. I have to breathe deeply, to push past the anxiety and find life worth living again.

What if. . . ? Is a dangerous game to play but strangely seductive, too seductive. Its soft siren song will lure you in and before long you are walking in the the twilight world of 'what if' and doubt and fear. Sometimes it's too much to bear.

But I must walk away.

I must run away, for madness is what lurks there.

I turn my face to the sunlight, I feel the warmth on my face.

I bask in the glow of hope.

Tomorrow will be a better day.

Breast Cancer, The Media & 'Zleb' Culture

It's Breast Cancer Awareness Month so of course there are lots of stories popping up all over the place featuring various 'celebrities' who have breast cancer and I am sick to death of hearing how one particular actress thinks of it as 'just a year out of my life'! For fuck's sake woman, will you stop giving the impression that breast cancer is soft, pink, fluffy and having it/being treated for it is like a picnic in the park! I was incensed at a television interview she gave last week, basically saying it was no big deal and equally incensed when I found out that they chose to interview her rather than the two 'ordinary' women originally signed up because their stories were about the crap side of having breast cancer. I have so much admiration for the likes of Kylie Minogue, Sally Whitaker and Jennifer Saunders (via her husband) who were honest enough to say that it is anything but 'just a year out of my life.'

Also, if one more bloody zleb tells the world that she has got the 'all clear' I swear I will buy a gun and shoot her myself! You never get an 'all clear' for breast cancer, it's one of those that is very good at reappearing in other places, coming back in the other breast or on the site of your original lump. Okay, it is fair to say that I fall into the smaller percentage of women at a much higher risk of recurrence which is why this really annoys me, but no one yet knows enough about the mechanisms that breast cancer cells use to enable it lay dormant and then pop up again after primary treatment is completed, often years after that treatment is completed. This is why you can never say you have the 'all clear' all you can say is that you have 'no evidence of disease.'

This has led me to wonder whether celebrity spokeswomen for breast cancer are in fact more of a hindrance than a help because far too many of them paint a less than honest picture about what it means to have it. This is all part of why I think that whilst it has its uses, breast cancer awareness month is far too pink and fluffy for its own good. Plus a large percentage of it is marketed towards younger women when in fact the greatest proportion of women with breast cancer fall into the 60+ age category. I have yet to see much in any of the media coverage so far that actually talks about how to check your breasts and why is there no mention that men can get it too. . .

Some times it's the little things that get you down!

At the end of the month I am hosting a fund raising event in support of Breast Cancer Care and I thought it would be the simplest thing in the world to buy an elegant, long dress in pink. However, I discovered that finding one that was mastectomy-friendly was very hard indeed and really brought home to me just how much having breast cancer affects my life, making even the most mundane of things a trial and a chore. It's very hard not to end up depressed and disillusioned about it all!

As it comes up to the first anniversary of my diagnosis I have been thinking about five things:

1. Breast cancer changes your life - for ever. It's something that you have to find some way of living with because once you have been diagnosed and treated there will always be that niggling worry that it will pop up again somewhere else.

2. Life is precious and easily stolen from you. Guard it carefully and use it to the full!

3. Value your friendships, but be prepared for those who you thought you could rely on the most to fall at the very first hurdle. Sadly far too many of my friends were incredibly unsupportive and the only good thing that came out of that was a shorter christmas card list! I was shocked at how many of my long-standing friends deserted me when I needed them most and indeed equally shocked that now the trials and tribulations of active treatment are over, just how many of them now want to have more to do with me again. There is always someone who views your illness as an opportunity to take advantage of your vulnerability and when it happens it can be very shocking. Thankfully I have the most fabulous husband and a very supportive family who, along with the friends that did stay around, gave me lots of support when I needed it.

4. Britain's National Health Service is nothing short of brilliant where I live and I have had nothing but care of the finest standard. I am hugely grateful for this because sadly it's not a reflection of a lot of people's experiences of the NHS.

5. Never underestimate just how much having breast cancer will affect you psychologically and emotionally. It's not just the scars that you can see that you need to adjust to and it's not a good idea to ignore this. Whilst the Post Traumatic Stress Disorder I developed as a result of all my emergency, life-threatening treatment has subsided greatly, it still rears it's ugly head and catches me out when I least expect it. This plus the psychological impact of the changes to my body has taken its toll over the past year and I have a long way to go before I will reach a place where I can truly be happy again.

I could add considerably more to this list and I will probably talk more about them over the coming weeks but I think it is fair to say that nothing really prepares you for life after diagnosis. You just have to plough your way through it as best you can and hope for the best whilst preparing for the worst.

Most importantly I have discovered that there is life and it is worth living - I just need to work at how!

It's been a while. . .

It's been an 'interesting' few weeks one way or another as I come up to the first anniversary of when I found that dreaded lump. I've been through some of the first annual check ups, developed a problem shoulder, a worry about a shadow on my lung and to round things off nicely today I found out that I could very well have shingles right over my treatment site! 

It's certainly true to say that I don't do things halves that's for sure!

I was very apprehensive about the first round of check ups partly because for one of them I was back in that same waiting room I sat terrified in awaiting diagnosis last year and it brought back all the old fears and worries. This was a meeting with my oncologist and when I mentioned that my shoulder has been troubling me (painful with a loss of mobility) she arranged an x-ray knowing that just a few days later I would be seeing my surgeon. This resulted in a hot ticket straight back into the 'have I got cancer?' game as the x-ray showed a distinct shadow on my lung that was not there before treatment. My surgeon was worried enough to order an urgent CT scan for the following week and right now the jury is out on whether it's something more to worry about cancer-wise or damage from radiotherapy. My surgeon is leaning towards the latter but is going to get some further opinions on the scan before deciding fully one way or another.

Meanwhile I am struggling with an ever decreasing range of movement in my right shoulder for which I am having steroid injections into the bursa in a bid to solve the problem. It's a tricky one - weighing up the benefits of the steroids against the risk of lymphoedema from the injections. Right now though it's so uncomfortable that I decided to take the risk of the injections.

The final straw is to discover today that I might have shingles and that if I do have it, it's too late for an anti-viral to make a difference. Just what I don't need!

Whilst I haven't been posting online for a while, I have still been writing and I hope to post some of that over the next few days. It's musings about the past year and observations on just how much breast cancer has changed my life.

Now what I need is a trip to the doctor that doesn't result in more tests, more worries or something new to be wrong with me!

When will today be a better day?

I had an awful experience at the supermarket yesterday when a customer behaved horribly to me as she perceived I was in her way because I was walking with a stick. The staff in the store were magnificent but it reduced me to tears in private when I got home.

What this incident did was bring to the surface just how upset I am about my current situation. The fact that try as hard as I can, I am still reliant on a walking stick outside of home, that I am so, so tired and in pain all the time and that my body is currently a mess.

I go in cycles with this as there are days when I can tell myself that it's all about baby steps, but then there are the days when I think about how things were this time last year and I feel so despondent about how much breast cancer has changed my life. It is so hard to find a balance between the two! When I thought about it, I realised that a family wedding in August last year is the last time that I actually felt happy as just a couple of weeks later I found the lump. I have written before about my problem with 'happiness' and the fact that I feel I have forgotten what it means to experience it and I find myself wondering if I can ever manage to find my way back to that place. It's a tough thing to have to admit but things are never going to be the same again and I have to find some way of dealing with and indeed accepting what normal now means for me.

I can't change the fact that I have breast cancer or what it has done to me, but dealing with the reality of that is proving to be more difficult than I'd anticipated. Somehow it's worse when the sun is shining as I feel like I ought be happy or at least grateful that I am here to experience it, sadly it just isn't that easy.

At the moment I feel like all I do is exist and that I am caught in some kind of limbo land. Until I can find a way to move forwards I am stuck in this strange place yearning for how things used to be and unable to face what today's reality brings. I know that I need to find a way of dealing with it all but I've yet to manage to do this.

I'm just hoping that one day soon I will be able to say 'today is a better day.'