Moving.....Backwards?!?!?!

So, it's December and I've just finished a post Breast Cancer Course called Moving Forward.  I did really enjoy it and it was very useful.....unfortunately other factors have made me feel like I'm actually going backwards.

I have recently been diagnosed with Lymphoedema and had my assessment with the local Lymphoedema Nurse a few days ago, it was not a good couple of hours, my arm is buggered at the moment, lots of nerve damage from the surgery and she also diagnosed me with Cellulitis in the affected breast as well as the original problem of Lymphoedema!  So armed with antibiotics I came away and had a good cry with the words "you are not looking after yourself enough" ringing in my ears.

I think maybe I've gotten ahead of myself, trying to con myself into thinking I'm OK when quite obviously I'm not. But I want to be, and therein lies the problem.  I'm falling over myself to try and be normal and to be back where I was before my diagnosis and in doing that I've not done myself any favours.

So after my horrible few days some advice, take care of yourself, you are the only one who knows you well enough to know what is good for you and at this time when we are all struggling to get back to "normality" whatever that is, be especially kind to yourself, put yourself first - the world will not end if you do. 

Breast Cancer Awareness

So, its October again and Breast Cancer Awareness month to boot.  I hear a lot of discussion both positive and negative to do with BC Awareness campaigns - but is any publicity really bad publicity in this instance? 

Everyone is different in how they react to a charity or awareness campaign - some prefer to see the harsh gritty reality and some prefer the softer approach - the cuddly toy or in Breast Cancer's case the Pink Ribbon.

I personally like both and feel that both have there place, for instance I put a link to the Scar Project up on my Facebook page, their tag line being "Breast Cancer is Not a Pink Ribbon", and yes they are right the harsh reality of Breast Cancer is not soft and cuddly.  The point being I exposed a group of friends to something very honest and that some may find uncomfortable viewing, but I was quite surprised when a close male friend said he had looked at the link and was absolutely blown away by the honesty and bravery of the project, I think it also helped him understand more about what I was going through and enabled us as friends to speak more freely about it.

But on the flip side of this the Pink Ribbon is one of the most recognised awareness symbols today and a lot of big brands have jumped on the "Pink" bandwagon giving a percentage of the profits from their "Pink" items to Breast Cancer Charities.  I don't think there is anything wrong with the Pink and fluffy approach but maybe we are becoming too focused on the product and the symbol and the actual message is getting lost - Breast Cancer is a killer, anyone can get it and we should know what to look for - but even with all the "Pink" awareness people still don't know what to look for and still ignore the symptoms!  This is why I say that maybe the focus is sometimes too much in the wrong direction.

I think also it is an interesting debate as to what retailers / brands the Breast Cancer Charities are joining up with - I think one that I saw that I really was unsure about was KFC! 

At the end of the day any awareness campaign is good but I think that certainly the more commercial campaigns should be looking for a better way to get the real message across instead of just thinking about their profit margin.

Struggling along...

It's been five months since my cancer treatment ended in March and I have to admit I am finding things a struggle.  Although my mind is calmer since having the all clear from the CT Scan I had it has just been filled by other worries, and physically I am still having problems with fatigue and finding the motivation to exercise.

I am having major issues with body image too, although I was lucky that I did not have to have a mastectomy the scarring and subsequent damage done by the radiotherapy has been upsetting me more than I thought it would.  It's a horrible feeling looking at all the perfect breasted poster girls and actresses and feeling, well, deformed.  And because I feel this way I project it onto my other half and just assume he must find me horrible to look at - which he assures me he does not. 

I find it hard in a culture so obsessed with looks and perfection to accept this, even though I would never have considered myself to be bothered with image or looks - I am really struggling to understand why this bothers me so much!  I will be seeing the plastic surgeon early next year after the radiotherapy has stopped working and done it's worst, and right now I'm hoping things can be rectified.

Physically I'm still tired much of the time and mustering any motivation to exercise is proving very difficult coupled with all the pressure I am starting to feel to start my life over again - sometimes its almost like you are afraid to start just in case you get sick again, and this again is something I am struggling to overcome.

It seems there are a million problems that come after treatment ends and as much as I try to take the physical and emotional side effects/problems on board and just get on with it, sometimes it does just get overwhelming.  I do sit and wish that I could wave a magic wand and make all these doubts, worries and physical problems disappear - not just for me but for all the cancer fighters and survivors out there. 
"Healing is a matter of time, but it is sometimes also a matter of opportunity" - Hippocrates

My Body the Stranger

Over the past year since it let me down, my body has become a stranger.  Before I was diagnosed with Cancer I knew what was normal for me and what wasn't - now any ache or pain and I panic - and yes I guess after what has happened this is a normal thing.

So after my treatment finished in March I have already been back to see my Consultant twice.  The first time I thought I could feel something not right in my affected Breast - luckily one Mammogram and Ultrasound later I was proved wrong and given the all clear.  The second time has happened in the last week, I went to a follow up session with the Breast Care Nurses and we discussed what problems to look for and what to report to them.  I had been having some back pain which had suddenly gotten a lot worse, was affecting my sleep and not responding to pain killers, so off to the Consultant I went.  On examination he was not happy and ordered a bone scan, a few days later I was told there is a problem area, but they don't know what it is so I am now awaiting a CT scan.

I just feel so terrified all the damn time and I am getting sick to the back teeth of it if I'm honest, I just want to feel normal - or at least to know what normal is again for me!  I know it will take time to get anywhere close to trusting myself in this way again. I have to say this again but just because my treatment is over does not mean I am fine!  Far from it in fact!

Feeling ill at ease with myself physically is starting to get the better of me at the moment - especially as I am yet again under investigation for something.  It could be nothing, I seriously hope it is nothing but its another setback which unfortunately has had bigger consequences in that I have now had to cancel my month long holiday to deal with it - I really needed the break and the distance.  My timing couldn't be much worse.

I know being overly cautious at the moment is expected, but when does it stop?  When do you bite the bullet and not go running to the Hospital in a panic that your Cancer is back?  I am starting to think that coping with the fallout from Cancer is just as hard as fighting the actual disease itself, hopefully one day soon I will beat this side of it too.

Lost Love

Before I was diagnosed in June 2011 I had just about reached a point after my losing my husband in August 2009 where it would have been nice to meet someone.  However then being diagnosed with Breast Cancer somewhat stopped me in my tracks.

Towards the end of my treatment I did start to really miss the affection and love that being with the right person brings,  I jumped into something...probably far too fast and found that I couldn't start to sort myself out, which I am basically having to do from scratch, and put in the effort required to keep the relationship going.  If I was in an established relationship I have no doubt it would be different.
I think I need to be selfish for a while - no that's wrong - maybe I just need to put myself first for a change and really sort out my head after what has been the worst three years of my life.  Sometimes I think I make light of it to stop myself from facing it all because when I do like now for example it makes me fall apart, and it also reminds me that the one person above all others that I want to be here to put me back together isn't and never will be again.

It is nearing 3 years since my husband died, 3 years since I felt his arms wrapped around me making me feel safe and loved, it makes my heart ache.  I can honestly say I loved him more deeply than anyone or anything, that feeling never went away and if anything just grew stronger as time went on.

I just feel like I want to tell people, if you have that love, the love that brings out the best in both of you in every way, hold on tight to it, never, never take it for granted and maybe you can make a wish for me, that when I am ready I will get a love like that back again someday.

Help...Any Way I Can

I think anyone with any experience of Cancer and I don't just mean those of us who have suffered with it, are of the same opinion - I don't want anyone else to have to go though this. 

Having met many people that are living with or have survived Cancer I have found that one thing seems to be true of all of them - myself included - they want to help, any way possible to stop this disease.

Throughout my treatment and now it has ended I have tried to provide support to others by being completely honest in this Blog about my experiences. I hope that these musings have helped other people, being so honest and in some cases making fun of the situation has certainly been invaluable to me, like a form of therapy.  As I get stronger I find myself wanting to do more and more - studies - documentaries - support to charities and even starting to write a book about my experiences over the past 3 years dealing with both being a Widow and my own Cancer journey.

I have certainly met the most amazing and generous people because of this journey I am on and feel my life is all the richer for that, I have also learnt to go with the flow, which I as someone who likes to be in control of their own destiny found very hard.  Facing your mortality makes you realise that people are perfectly imperfect and I for one would not have it any other way, life would be very dull otherwise.

So, how do I help?...the answer - any way I can.

I still feel that I am lucky and very blessed - a friend recently asked me if I felt I have been dealt a raw deal by life.....in some ways yes, but I'm not going to sit and piss and moan about it - people deal with a lot worse than I have been through every second of every day, and so far what has not killed me has only made me stronger.

12 Month Anniversary

The weekend of May 28th marked the start of a long line of 12 month anniversaries, it was 12 months at that time when I found the lump that would put my life on hold for over a year.  But like I said, this one anniversary triggers off several more - having surgery to remove the Cancer, starting chemo, losing my hair and so on. I just wonder whether acknowledging these anniversaries does more harm than good. 

The first one when I think about it is still difficult to get my head around.  I was sick for a YEAR, a year, gone, just like that.  Its strange when you start having treatment it feels like it drags on forever and then in the blink of an eye you are here, where I am, 12 months on trying to reclaim your life.

But now I am getting better and do I really want to keep dwelling on what I have been through?  No doubt that this experience has made me stronger and had other positive effects on me, but it has also made me face my own mortality, scared me, made me needy in some ways so to keep looking back, will that stop me going forward?

I know that once I start to get back to some kind of normality, job, relationship, place to live, social life etc the worry about getting ill again will subside, but I guess not having much else to focus on right now the fear and worry is still at the forefront of my mind, although it is easier to push back as time goes on.

My life will never be totally free of this shadow that seems to affect everything I do but I am hopeful that I will get to do all the things I still want to do, and I hope that my experiences will enable me to help others.  I would never say that being ill is a blessing, but it has helped me face some difficult things in my life and I know that I will never take anything for granted.

Road to Recovery and Freedom????

I finished my hospital treatment on March 13th 2012.  It has been approximately 2 and a bit weeks and it feels like forever.  I'm not sure if others have experienced this but I seem to swing from having infinite patience and tolerance to none at all!  I have found myself to be snappy and mean and that's just not me, I don't like it but I guess its one of those psychological side effects that comes from being ill and poked and prodded and having limited ability to do what you want and go where you want for a year.

I want everything now or even better yesterday!  I don't want to wait for anything and it feels like my recovery is going at a snails pace.  I just want normality I guess, to be able to go bloody swimming so I can start to get rid of the weight I've gained through treatment, to go out for a few hours and not be totally knackered the next day!  To put my hair in a ponytail! Lol!

This road to recovery is going to be a long one it seems and there are still hurdles to come - I have to see the Genetics people in April and am worried the outcome will include more surgery, I am still waiting to see what side effects the Tamoxifen (hormone treatment) will have on me, every test I have puts me on tender hooks and this is all before I have to look for a job/place to live and start my life over again.

I guess being through all this I just want simplicity in my life - no games, no complications just truth and purity, its very true that life is too short to mess about, but with living in that way you must be brave - to be honest to be true to yourself in all areas of your life.  Its an old adage but in the end the truth will set you free.......

Beginning of the end

So I am now on the home stretch as far as my Hospital treatment goes, my Chemo finished on Feb 14th and I have now had my first 2 weeks of Radiotherapy with less than a week to go on that, I have also started my Hormone treatment of Tamoxifen tablets which I have to take for 5 years.

How do I feel about all this?  I guess most people would expect me to be ecstatic, and I am but I can't seem to show it, I feel strangely numb about the whole thing. 

A lot of it has to do with the fact that I am still feeling pretty awful and not myself at all, the fatigue has really floored me over the past few weeks to the point of breaking down in tears, I just feel so useless right now, at times it kills me just to walk up the stairs.  Then there is the pain from the Radiotherapy in my arm and breast which is uncomfortable most of the time - I know this will go but it does put any celebratory feelings on the back burner.  I have plently of scars too, a permanent reminder, my chest does look like it's been attacked by a baby werewolf.

Its weird because I feel bad about not feeling happy about my hospital treatment finishing and being Cancer free, and I think its because everyone else focuses on the end of treatment and many of them think that will be that - you are done, you are fine, but I know this is not the case, I now have a lifetime of checks and tablets and worry no matter how much I try not to let it affect me.

I know that what has happened to me could have been a hell of a lot worse and considering what some people I know are going through I consider myself lucky, so yes I will celebrate when I feel better in myself but I know the moment will be bittersweet.

Dying to live

So, this week I heard of the deaths of two Breast Cancer fighters - it's not something you tend to talk about too much I guess as remaining positive goes a long way.  I do however have a small girl in the back of my mind who is terrified by the prospect of dying from Breast Cancer, and this week she escaped and had a full blown screaming run around in my head!

I do try not to think about it, but as will anyone who has had a serious illness it's always there, I just feel so terrible for these amazing women's families and friends, but it also sets off these alarms in my head - a full on panic - what if, what if, what if it happens to me too.

When this happens it just sends me into a spiral of thinking about all the things I still want to do and still need time to do.  I really want to be a Mom, I want to meet an amazing Man and be happy, be a family, I want to travel and experience, to live and love, to laugh and dance....anything but die, and my girl in my head just keeps running and screaming out all these things.

So here we are a few days later and the screaming girl in my head has calmed somewhat.  As I get closer to the end of my treatment I seem to get more and more upset, when I should be overjoyed!  A subject I think for my next Blog......

To Wig or not to Wig?

So, I'm nearly done with Chemo and my hair is back - I still look like a tennis ball as its very short but I could now go without my wig.  The problem is I can't seem to take the step of giving it up.

It seems silly to me that getting back to normality could cause me such angst, but I guess its more peoples reactions that I'm worried about - which really isn't like me at all.  Being so short I know people will look at my hair and probably think to themselves "Hmmmm Cancer" and I don't want to be treated any differently because of that.  And lets face it - my hair like this - not a fashion statement!

I think my reluctance to let the wig go is because before I lost it all I had really long hair to hide behind and my wig affords me the same option!  It's a confidence thing too - although short hair does suit me I just feel....well naked without my mane!

I'm sure a lot of the women who lose their hair through chemo or other reasons go through this but I wasn't expecting to be so bothered by it, it's just hair for God's sake! Why should I care what anyone thinks?  It will grow back properly soon enough!

So now the question is.....when will I be brave enough to lose the wig?  I will be going out for lunch with some friends in a few days...should I just take the plunge?  I will keep you posted!!

How do they see me now?

Over the last few months I have been called lots of things, inspiring, amazing, wonderful and even a hero. These very generous comments have come from family, friends and more often than not strangers.  But I have to say as flattering as these comments are, I don't believe the hype.  I am honoured to be able to raise awareness for Breast Cancer and other issues and will help anyone in any way I can but I don't see myself as anything special....I'm just me.

It does make me wonder though how other people in my life really see me now?  Am I still the same Zoe as I was before all the body blows life has dealt me or am I someone different?  I find it interesting now that after what I've been through some people want to keep me close while others want to push me away - I think this comes down to fear & how you react when someone you know has a life threatening illness - do you keep them close & relish your time with them or do you push them away because if something went wrong and you did lose them, could you cope? 

I think generally my friends and family that have been around me during my treatment are relieved that I have been quite lucky in that I have not had any major traumas or been very very ill.  There has only been one point where my Mom has said that I did look very poorly and that did scare her so all in all I think we have done OK!! I know that my parents have found this hard but my relationship with them is all the stronger for it - I try to be mindful that although I am the one who is sick they have had to face the prospect that they could lose me - I remember vividly the horror on my Mothers face when my Consultant said "you should live for another 10 years" - at 34 its not exactly much time!

Relationships during a time like this are always changing because the situation is, I think I try my best not to moan & to just get on with it but its always amazing to have support from family and friends and I hope that they know just how much I love and appreciate them and always will.

Help Wanted

When my Husband passed away from Lung Cancer I was, well there is not really a word I can use that would do the feelings of loss, devestation and sorrow justice.  I was contacted a few days after by St Giles Hospice that would have provided Palliative Care to my Husband (if he had survived to that point) asking if I wanted to speak to one of their Councillors (free of charge of course as St Giles are a Charity) - I didn't - it was all too raw at that point so I declined the offer. 

A few weeks later whilst sitting on the arm of my sofa, alone in the flat I shared with my Husband and sobbing like a baby I had what some Alcoholics refer to as a moment of clarity - I was not going to make it through this alone.  And by that I am not saying I had no support, I did, friends and family were amazing, but the trauma of losing my husband so young and so fast left me wanting to talk about things that I couldn't with people I knew.  It is very hard to talk to someone you know sometimes as they get upset or don't know how to react, or just can't cope with the feelings someone in my position had, and lets face it the people that knew my Husband had their own grief to cope with aswell.

After my moment I called and arranged a meeting with the Hospice's Department Head for the Councelling and we talked about what had happened, she then assigned me a Councillor.  I don't think it would be a lie to say I would not have made it throught the next year without her help.  I had some extremely low times and did briefly contemplate ending it all as the pain was too much to bear.  I had sessions where all I could do was cry or not say much at all - but that was ok, someone was listening and understanding and could speak to me from a place where they were not emotionally involved, although it must be terribly hard to deal with some of the things widowed people talk about.

My Councillor helped me start remembering the fun times my Husband and I had as all I could think of at first was him being terribly ill and losing him.  But it was all the other things that comes with being Widowed too, I had to move out of our flat, the place we were happy, the place where we got married, it was heartbreaking to leave.  I also couldn't face going back to work as that was where we met and where he came to do work - I remember one Valentines day getting in to work and he had already been in and left a Red Rose and a "Love Monkey" toy sat on my desk :-)

Losing someone you love changes your whole life and had I not had the support I did the outcome might have been very different indeed.  I owe a lot to my Councillor and will never forget the help and advice she gave me.

Just to clarify for you, I didn't ever ask for help in my life, I always thought I was strong enough to cope with anything life threw at me alone, so to do what I did by asking for help from St Giles for me at first made me feel weak and needy - but I am here to tell you, don't ever think that, asking for help when you need it is sometimes the bravest thing you can do.

The Fear

I hope Erin does not mind but I am stealing her Blog title after reading it as I think it is definitely a subject worth talking about!

Being close to the end of my treatment I find myself worrying more and more about my Cancer returning in one way or another.  I just feel that in the past 8 months I have been through a lot and thinking about my treatment finishing makes me a little teary as I will be so glad its over.  The Fear however gets worse as this approaches - what if it does come back?  I'm not sure I would have the strength either physically or mentally to do this all again.  And what if I did find something that needed to be investigated, would I tell anyone?  Would I want to put anyone through that?

When I originally found my lump I did not tell anyone, I did all of the appointments alone, I did question my decision at the time but I guess like anyone in that position you always hope it will be nothing so there will be nothing to tell.  However when it is something telling people is hard - especially when like me you have kept it all secret, I felt terrible when I told my parents, I literally came home from the hospital after being told myself and dropped this bombshell on them - in hindsight I am still not sure I did the right thing. 
I guess if my Husband was here I would have told people as it would have been much harder to keep it secret, but now if I found something would I tell?  I'm still not sure.

The Fear sits at the back of my mind all the time and I will have to learn to deal with it, but that's hard when you are constantly at odds with your own body - every twinge or pain comes with a side of dread that something is wrong and checking my boobs now is an ordeal in itself that comes with a hefty sigh of relief that so far nothing else has appeared.
I suppose in time I will make peace with my body again and in a way that will help me deal with The Fear as I will again get used to what is normal for me and know when something is amiss. 

The psychological effects of having Cancer I don't think will ever go away, and I hope that in time The Fear will become less of a feature in my mind - as with anything it will take time to make my peace with the fact that my Cancer could come back, but one thing I know is that if it did I have amazing family and friends to help me through, I couldn't ask for any better.