Saturday 3 December 2011

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!

Monday 14 November 2011

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.

Friday 14 October 2011

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.

Thursday 13 October 2011

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. . .

Monday 10 October 2011

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!

Monday 26 September 2011

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!

Friday 5 August 2011

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.'

Saturday 9 July 2011

Looking for the real me

Where has the real me gone?

There is a stranger looking back from the mirror at me, she has a haunted, tired look, like someone who has forgotten what it means to be happy. It is not a person I recognise, this stranger staring at me.

Why can't things be like before? Will I ever be happy again?

I cry tears of frustration and despair when I look in the mirror, searching, hoping that one day the real me will be looking back, but part of me knows that things have gone to far for that. My sense of me and what it now means to be me is snarled up in a mess of negativity.

I am looking for a way to cut myself free.

The sun is shining but it feels like it is raining deep inside my heart, when did summer so suddenly become winter?

Where is the warmth that happiness brings, more than that - where is happiness and why has it abandoned me?

It's a cold and lonely road to traverse when you feel that sadness rides on your shoulder chasing the good things away, its weight bearing you down.

I want to love the new me but she's an awkward child to love; difficult to look at and even harder to call my own. She desperately needs me to love her but I am struggling to look at her, let alone embrace her as mine. This is a new relationship, all raw edges and hard choices and I struggle to do the right thing.

What is the right thing and where do I go from here?

I look in the mirror again. 

Yes I know that woman. 

Older, sadder, worn and weary, one day soon I will have to call her my own.

Sunday 3 July 2011

Future Imperfect

Over the last few days I've been thinking about several things. The first was triggered by a question from a friend, the rest by discovering how breast cancer affects your life at even the most mundane of levels.

Thinking about the future.

One of the first things that crosses the mind of anyone diagnosed with cancer is 'do I have a future?' It was certainly one of those thoughts that popped up time and again as I dealt with not only having cancer in the first place but knowing that my 5 year survival rate was less than spectacular. In my darkest hours I didn't see much point in planning for any sort of future at all, convinced that I'd soon be dead anyhow. Common sense did finally kick in at some point when I decided that whilst the percentage for survival wasn't brilliant there's no point in panicking just yet when I've only just finished 8 months of gruelling treatment.

Someone asked me recently if I had drawn up a 'Bucket List' and was rather surprised when I responded with an emphatic NO! Why not? To me the thoughts of having a definitive list of must do things is an anathema because I plan on being around for as long as possible and having this sort of list says to me that I know cancer is going to kill me soon. The thing is, I don't plan on dying any time soon so I won't be compiling any sort of list of things to do before I die. What do I do when I get to the end of the list and I'm still here?? I know of course that I'd probably feel different about this if I had stage 4 or secondary recurrence but I haven't, so this sort of planning really does seem kind of defeatist to me.

On to the more mundane!

OMFG but it's hard to find clothes and underwear that actually fits, never mind the outrageous cost of most mastectomy clothing! I've realised that finding clothing that works and looks age-appropriate/pretty (as in not 'mutton dressed as lamb') is proving to be extremely hard to find. Pretty much all manufacturers of mastectomy bras don't go down to a 30D or if they do they want twice the price of a standard bra in the same size which I cannot afford. Ditto for clothes; it's absolutely fine if I want to live in t-shirts and jeans/capri pants but what about when I want to wear something floaty, pretty and summery? The answer to that is pretty much 'tough luck' because specialist mastectomy clothing mainly starts at a UK 10 and I am a size 6/8 and most things on the high street in sizes that would fit come into one of two categories - seriously not age appropriate and cut too low that even with a mastectomy bra just wouldn't look right or cover up the scars that are not under the bra.

It is so depressing!

It feels like anything even resembling a 'normal life' is very hard to achieve. It's difficult enough when you are dealing with the emotional trauma of it all to find that things are compounded by being unable to do a quite basic thing like buy suitable clothing.

Manufacturers wake up and hear me roar!

I am not the only woman in the world (or indeed the UK!) facing this problem, please do something about it. We are standing here with the cash to spend and nowhere to spend it!

I am seriously considering a letter campaign to many of the top manufacturers to bring this to their attention. Breast cancer is hard enough to deal with in the first place without it being very hard to buy even a basic bra or clothing that fits!

This is something that I am sure I will be posting about again because I feel so strongly about it. You have been warned and the next time you get in touch for a chat please don't ask me what once in a lifetime trips/experiences I have lined up because I'm not going anywhere just yet!

Friday 24 June 2011

A curious thing. . .


I realised this morning that my bathroom cupboard is still full of all the trappings of my pre-menopause, pre-chemotherapy life. Why have I not thrown it all away??? It seems bizarre that I haven't, given the fact that I've had hellish problems with it all over the years and had in fact been in discussions with my GP last year about the possibility of a hysterectomy. I wonder whether it is something in my subconscious not wanting to admit that my days of fertility are at an end?

That would be very strange considering that being a mother was not exactly ever on my list of priorities. Then again maybe it's an age/milestone thing? Perhaps subconsciously I am unable to throw everything away because it means admitting to myself that I am now most definitely in 'middle life' and having to deal with the consequences of growing old(er). Part of me also wonders whether it's just my brain still not able to come to terms with how cancer has affected my body - permanently.

All very strange to my way of thinking because whilst very few women 'celebrate' reaching the end of periods, mostly it is a huge sense of relief not to be bothered with the hassle of it all any more. I remember back in January when I'd realised that periods had stopped after my first cycle of chemotherapy, thinking 'well that's one thing less to worry about' and just being grateful that I wouldn't be dealing with that as well as all the chemo side effects.

Like I said - all very strange. . .this cancer thing, it messes with your head!

Monday 20 June 2011

Stress

Just over a week ago I finally reached breaking point with all the flashbacks and nightmares etc and finally admitted defeat and went to my doctor for help. He has diagnosed me as having post traumatic stress disorder and thinks I need to see a therapist in order to try and get some closure after all the horrible nearly dying stuff. I've been put on some anti-depressants and given contact details for a therapist. Part of me has breathed a huge sigh of relief - I'm not going bonkers after all! However, part of me also feels guilty and, if I'm honest, slightly ashamed at getting in this kind of state in the first place. I know that's silly but it's been really hard to shake those feelings off, even though many medical professionals have told me that this sort of thing is actually very common after the experiences I've had. I'm normally the shoulder that everyone else cries on, so asking for help was really quite difficult. Also in the back of my mind I felt that I was letting down all those people who had praised me for coping with everything so well - I didn't want to shatter their illusions and neither did I want to admit defeat and admit there was something wrong.

Apart from the medication and the prospect of some much-needed therapy, I have come across two other things that have really helped me to deal with all of this. The first is Breast Cancer Care's Moving Forward Resource Pack which made me realise that what I am feeling now that active treatment is over is completely normal. I can't tell you what a relief it was to read through the pack and recognise that I'm not alone.

The other thing that is helping a lot is this book - The Cancer Survivor's Companion: Practical ways to cope with your feelings after cancer. It contains lots of helpful advice, tips and tricks for helping you to cope with how cancer has affected you and how to try and move forward after treatment has finished. It's a brilliant book that has already made a difference to me.

Saturday 11 June 2011

Where is the happiness button?

I am now officially two weeks from the last piece of active treatment and desperately trying to process everything that has happened to me over the last few months.

Nightmares and flashbacks are plaguing me with visions of my time in intensive care and the horrible fall. I just don't seem able to get them out of my head. My husband tells me that I cry and sound distressed in my sleep most nights and I'm getting flashbacks several times a day. They creep up on me unawares and leave me feeling tearful, depressed and scared. Surely after 7 weeks this should be starting to fade away now? The most frightening aspect of all this is that I feel like I've forgotten what it means or feels like to be happy, which is a very scary place to end up in.

I am also dealing with feelings of guilt at what this has done to my husband because the stress of it all has exacerbated a heart condition and is giving him angina. It's not uprising but equally it's hard to come to terms with the fact that my poor health has so badly affected his wellbeing. He's carried the burden of my care all these months and it has taken its toll on him.

The trip to ICU, knowing that I could have died, witnessing and being unable to prevent the horrible fall - goodness knows that would all be hard for anyone to cope with! To quote a popular cliché; we have been to hell and back more than once! I am so lucky to have his fabulous support, just knowing he's by my side has helped me so much.

Now though I am in a very strange place emotionally. I know that I need to deal with my feelings, find closure and move on and that I need to ask for professional help to do so.

But that's the hard thing. . . asking for help is not something I find easy to do.

Is it a sign of weakness or failure?

Well obviously the logical part of me knows that it is neither but it is a tough thing for me to admit that I need outside help. I am so used to being the shoulder that everyone else cries on. It feels alien having to reach out for help on my own account. I want, no that's not right; I need to take that step, to accept that there are some things you just cannot do on your own. It's not a cry in the wilderness because there are people who can help - if I ask.

Part of the problem is that I feel like I am also having to cope with the burden of everyone else's expectations. All along the way the medical staff and my friends and family have told me they are inspired by my fortitude, bravery and general stoicism.

But here's the thing folks; being brave has nothing to do with it! You just have to suck it up and get on with it. I want to live therefore having treatment was the only sensible option, it's as simple as that.

Bravery, 'courage under fire' whatever you want to call it, I don't see that as being a good label for me. These are descriptions of those who put themselves in danger for the sake of others. I was doing this for me, not for anyone else's benefit. I just had to take a deep breath and get on with it and that's what I did. No one could have predicted all the crap stuff with Docetaxel or that I'd end up as ill as I did.

It just happened and it doesn't happen to everyone.

But I am still here! I might need help to move on but I am here and that's what counts the most!

I know that my happiness button is inside me somewhere lying dormant and waiting for a gentle push. Just because it's hiding right now doesn't mean it will stay lost forever. I may be looking up from a deep abyss but at least I can see that there is light. It's not very bright, a long way off, I just need a little help to reach it.

Moving on after active treatment has finished is one of the hardest things that anyone with breast cancer will have to do. I think so many of us breathe a big sigh of relief when we get to the end of surgery/chemotherapy/radiotherapy, even if there is hormone therapy to follow. Sometimes it's only then that the enormity of what we've been through sinks in and there is an emotional fallout to cope with - just when people around us think we are finally on the mend.

In many ways it's just as tough as living through all the trauma of active treatment because it seems like your support system has been wrenched away. This is the time for pouring balm on a troubled psyche - it's the heart, mind and spirit that need nurturing now. That's where I am now - looking for a way out of the turmoil that has invaded my peace and understanding that this is not something I can do alone.

I will find the way upwards, onwards. It is possible to do that, there is help out there to enable me to do so. I just need to take that first step.

I want to believe that I can be happy again.

I can be happy again.

I can. . .

A treatment update part 2

I have now officially finished active treatment. I had 16 radiotherapy sessions and I've been started on two years of Tamoxifen.

The last few weeks have not been without their dramas though - I never do things by half! Less than a week after being discharged from hospital I had a very serious fall whilst struggling up some steps using the walking sticks. I fell quite a distance onto concrete outside our house with my treatment side taking almost the whole impact. The end result was 4 broken ribs and excruciating chest pain, plus I was scared I done damage to my mastectomy site but it turned out that I had two broken ribs and a haematoma on my lung directly underneath. I was given Tramadol to help with the pain and the following Monday I started my daily expeditions to the other side of the county for radiotherapy. I am enormously grateful to Go North Devon and the North Devon Cancer Care Trust who fund a subsidised service that collects patients from home and drives to the hospital direct. I couldn't have managed to get to treatment at Exeter very easily without this service. We live on the opposite side of the county and it would have been very expensive to get there using our own car. I would leave home around 1.45pm and not get home again until about 7pm - a very long day!

The first week was nothing short of agony because of my ribs and on day four for some reason the radiographers couldn't get me lined up properly. It took far longer than normal, was very painful and reduced me to tears. The staff were nothing short of magnificent; they were so upset that they were hurting me when they didn't want to and during the course of my treatment showed me a huge amount of compassion and care. A brilliant example of the NHS at its best.

Apart from a small patch of radiation burn the treatment has gone pretty much without any problems - a nice change for me! As the three weeks came to an end I was getting more and more exhausted though. Nothing really prepares you for the daily grind of treatment 5 days a week and by the end I'd had enough both physically and mentally. My body demonstrated this by presenting me with a 4 day gastric bug just a week after treatment was over. I kissed goodbye to much of the weight I had managed to put back on so I'm back on the food supplements again. I am happy to report though that my mobility is greatly improved. I'm now only using one walking stick and that's when I go out, at home I'm now pretty much managing without any additional support.

Physically I am over the worst now, emotionally though things are completely different and I'll talk about that in my next entry.

Friday 29 April 2011

Stepping back from the precipice - a treatment update

It has been a very scary 5 weeks, during which I had two allergic reactions to Docetaxel and two episodes of neutropenic sepsis, the last of which nearly cost me my life.

All the trouble began when I started the course of 4 Docetaxel after the 4 AC. Up until that point I felt that I had been generally dealing with things quite well physically, even if I was occasionally struggling with it all from an emotional standpoint. I was in no way prepared for what Docetaxel would throw at me, even though I had read on some cancer forums that it can be a tough drug to cope with.

The first time I had treatment I had an allergic reaction as it was being administered. Scary enough but at least I was in the chemotherapy unit and the staff arrived in moments to deal with it. Everything was fine for the first six days until I went to my GP surgery to have the Hickman line flushed etc., as normal. At which point the practice nurse said she thought I had a temperature - she wasn't kidding it was almost 40oC! I went from feeling a little unwell to being very ill in the space of about 30 minutes and had to be rushed to hospital where I spent 5 days being nursed through neutropenic sepsis. At the time everyone treating me thought it likely that the Hickman line was the source of the problem but I did also have an infected toe, so the line was left in and I was pumped full of antibiotics before finally being allowed home.


Two and a half weeks later I have my second Docetaxel treatment and manage to get home before things started going wrong. I developed a high temperature and had a very tight chest and was advised to go to hospital where I was admitted for the weekend with a delayed allergic reaction.


So we get to the following Wednesday and I am once again having the line flushed at the local surgery. This time I'm not taken ill until I've been back home for about an hour at which point all hell breaks loose! I developed severe rigors and a very high temperature which caused me to have a seizure and briefly stop breathing - thank heavens that my quick thinking husband was at home with me and able to summon an ambulance! 


By the time I got to hospital I was in a very bad way indeed. I had a temperature of almost 41oC and my blood pressure had dropped to almost fatal levels, whilst my heart was racing at a dangerous speed as it desperately tried to keep my blood circulating. I spent 3 hours in A&E's resuscitation unit whilst the doctors tried to stabilise me and then it was decided that the best place for me was the intensive care unit. I had an emergency central line put in so that they could give me drugs to improve my BP and to look after my heart, as well as a broad spectrum antibiotic. At this point the doctors were convinced that the Hickman line was the source of the infection, so once I was admitted to intensive care it was removed. Cultures taken from it and blood tests confirmed that it was indeed the source of the infection.


I spent 5 days in intensive care before being nursed in a separate room on a ward and was allowed home after 8 days. I have been left incredibly weak and 10 days on I am still only really able to get about with the aid of two walking sticks, although that should improve as the days go by and I'm able to get out more. I also lost a lot of weight and as a result I am on a special diet and supplement drinks in order to try and remedy that.


As a result of everything that has happened my oncologist has decided that chemotherapy will be stopped as she feels that the risks far outweigh the benefits of having the two final treatments. I cried when she told me as I had nightmares whilst I was in hospital about what would happen when I had my next treatment!


When I saw my GP earlier this week he went through all the notes he'd received from the hospital and said that I was very lucky to be alive. Part of me still can't believe that it all happened and whilst I don't have clear memories of a lot of it, I am still having flashbacks and bad dreams about it all, so I am very relieved that I won't be having any more chemotherapy.


Once again I take my hat off to all the staff at the local hospital who gave me such wonderful care. I am so lucky to live near such a good hospital!


So what happens now? Just before I had the second Docetaxel I went to a planning session for the radiotherapy treatment which was due to start mid-June. Whilst it hasn't yet been formally confirmed, I'm pretty sure that this will now be brought forward to start shortly along with my starting on the hormone regimen.


The whole Docetaxel experience has been an absolute nightmare for me and I am hugely relieved that it is now over. I should also point out that what happened to me is very, very rare. Yes, chemotherapy patients are at risk of neutropenia which is why we are told to be so careful with hygiene and to look out for signs of infection, but it is only a small percentage of patients who develop it and an even tinier one that ends up in the condition I did. 


Now it's just a question of waiting to see when the next phase of treatment will begin and to count my blessings. I am very lucky to be here to write about it and believe me, I do know just how lucky I am!

Saturday 2 April 2011

D.A.D.A or 'where I am now'

This is an acronym  for Denial, Anger, Depression, Acceptance and is most often used to describe the steps one goes through in the process of dealing with a life-changing event. Dr Elizabeth Kübler-Ross used the system (denial, anger, bargaining, depression, acceptance) as a method of describing how her patients dealt with being diagnosed with a terminal illness but it has since been expanded to cover any significant life-changing event. I am using D.A.D.A because I don't need to bargain with anyone or anything at this stage in my life, the rest however I think will prove an accurate reflection of how I process what is happening to me right now.

Where I am now.

I am at a crossroads.

I am angry and depressed by turns.

Why did this happen to me?

Yes, I have other health issues but on the whole I have led a fit and healthy life (okay so I smoked briefly, but it was briefly a long time ago). I was a full vegetarian for over 25 years and even though I now eat small amounts of fish and poultry, until chemotherapy came along I had a very balanced and healthy diet. I rarely drink and have exercised regularly my entire life, so why the fuck did cancer pick me?

It is very easy to get sucked into life's general culture of blame. Partly because lifestyle does play a huge part in whether we succumb to certain cancers and also because the medical profession asks you so many endless questions about diet and exercise, you end up feeling like there must have been something you could have done to prevent this.

Did I miss that something? Did I make a mistake somewhere and somehow bring this on myself?

This is the stumbling block, the large rock in my way. I want to believe that it is just bad luck, and part of me acknowledges that that is very likely the case, but still I want, no need, to know why/how this happened to me. The problem is that I also need to accept that I'll never know and that makes me angry. I want answers dammit, why can't someone tell me what I want to know. . .

The doctors can't help, they are there to treat the physical results of cancer not to speculate on the why if the cause isn't obvious. They point you in the direction of dealing with the here and now - get treated, move on, deal with it as best you can. That's not to say that they aren't caring and compassionate, they are but they don't have the answers I'm looking for.

And I need answers, someone or something to help me make sense of it all. I am angry because I know that the answers aren't out there and that in turn leaves me despondent and depressed. I know I can't change what I did in the past, that blame is not a pathway to either acceptance or understanding but it is where I am now. I need someone to tell me how I got here.

Anger is a big part of my life, there are days when it consumes me. I yell at the world, at the cancer, at anything, even the smallest and pettiest of things is likely to set me off.

I scream, I cry, I rant and rail.

But the sheer futility of it all eventually overwhelms me.

Depression sets in.

It takes my hand and leads me to places I don't really want to go. I am looking through shaky fingers at a misty twilit world, full of half-formed demons. Demons of my own making. They don't chase me but look defiantly back, daring me to accept or deny their existence, waiting for me to take their hand and run off with them into the darkness. In their presence the anger I felt dissolves and I weep for what I see around me - the last vestiges of an unchanged life, a life that is rapidly being swallowed into the mist. I want, almost need, to run off with them and that scares me almost as much as the future does, because I know I could get lost there and stay lost for a long time.

Things will never be the same again.

The logical part of my mind knows this and wants to accept it, but the siren song that is both anger and depression encourages me to cling onto what cannot be, what will never be. I cannot go there again.

Yet still I cling on. Barely. My finger tips trying to grasp the last few precious moments of the 'life that was.'

Reality has not yet set in. Will it ever? Will I ever look through my fingers and see the beginning of brighter, better things?

Part of me hopes that the brightness is there, just waiting to peep over the horizon but somehow it knows that I'm not ready for the hazy glow of a new day's light, at least not just yet. Before the sunshine, you need the rain, before the day you need the night. To know life is to understand that you cannot have happiness without your share of pain. Is this the message that cancer is trying to tell me? I don't know.

I listen, I wait.

I can feel the pouring rain and though I am soaked, somehow I know that somewhere there is a sun waiting to dry me and warm me.

One day the sunlight will be a reality.

One day.

Wednesday 16 March 2011

so this is how it's going to be?

I think the penny has finally dropped about how having breast cancer will impact my life from now onwards, and it's a very scary and also very depressing realisation.

Currently my life feels like it is dominated by trips to the hospital/doctor/nurse, dealing with crap side effects from the chemotherapy and what seems like never ending problems with the Hickman line. Is this what life has devolved down to? Is there nothing else in my life but worries about treatment, its side effects and about whether the cancer will come back? The short answer is yes and it scares me that this is what it adds up to right now!

I don't want it to be like this, but at the moment I can't see how to change things. Part of this is I think born out of the fact that the last few weeks have been nothing short of grim on the side effects front, with everything from terrible mucositis, vomiting, diarrhoea, and extreme fatigue, not to mention bursting into tears at the slightest provocation. My husband deserves a medal for dealing with all of this!

I've haven't written here because I have found writing about this, or anything at all, very difficult. A combination of not being able to find the right words, just not being able to write for physical/emotional reasons and a huge frustration that my brain is so fogged up by the chemotherapy that writing is mentally very taxing. I have to check everything several times because I think one thing and write another and my spelling and general writing skills have deserted me. 

This is apparently a common side effect of chemotherapy, but it's an insidious thing that creeps up on you unawares. You find youself using the wrong words for things, forgetting silly things and needing to write lists for just about everything, because if you don't make a note of it, you can be damn sure that you'll forget it!

I think the combination of all these things has really dragged me down emotionally and now I am about to start phase 2 of chemotherapy (4 stronger doses of a new drug - Docetaxel) I feel scared about what the future holds for me.

I have to find a way back to sanity.

I don't want my life to be defined by cancer.

I am NOT a victim, I am a survivor. 

I just have to find the best path to survival - nothing difficult there then!

Sunday 16 January 2011

Persis Khambatta I am not!

The last vestiges of hair are pretty much gone now and any hopes I might have had for a good bald look vanished along with it all. It is so weird being so hairless (and I mean just about everywhere!) somehow I feel like my identity went down the plug hole with all the hair! At the moment I am just happy to still have a reasonable amount of eyebrows and lashes, although I expect they'll be gone soon as well. At least I do have a new wig to play with, although I have realised that I need a trip to the hairdresser to get it to look better, but that's a minor thing.

I am definitely finding the whole identity thing hard to deal with today, it's like I woke up not feeling like me and that's scary. I watched a repeat of How To Look Good Naked this morning which featured a woman who has been through the same thing and was in tears at the end when she came out wearing a bikini. It made me realise what I've lost but it also gave me some hope too, although sadly my scars are much worse than hers as mine goes right out under my arm and around the side of my chest. Plus don't get me started on the fact that for radiation treatment I will need to have lots of tattooed dots all over my chest wall from the clavicle downwards!

OH and I have discussed having a holiday at the end of next summer when I will hopefully have finished treatment and as I love swimming I badly want to be able to wear something other than T shirts but all the swimwear in the post surgery ranges look like they are designed with the 65+ market in mind. I keep wondering how am I ever going to feel feminine again! You only have to look through my undies drawer to see how hard that's going to be and it could be more than a year before I can even think about a recon, let alone see someone about it!

I really want to be able to dance again but I'm at a loss as where to begin when it comes to costuming and I really do need to have a proper goal when it comes to getting back on stage, because if I can't do that I'll be heartbroken. I guess today it all seems to be so far away, like a fantasy that will never quite come true.

I know all this seems like madness to worry about right now just when I should be more concerned about getting through the treatment, but part of it is also about telling myself that I do have a future and that I should plan for it now, so that I have goals and something to look forward too.

Friday 7 January 2011

Bye Bye Hair!

Today is the day that my hair fell out - rather spectacularly! Some people find that their hair falls out gradually others end up like me, it pretty much all falls out over the space of a few hours.

I woke up in the early hours with an aching head and realised that it was in fact the outside of my head that was hurting at which point I knew that major hairloss was on its way. However much you mentally prepare for it by reading advice leaflets, listening to other people's experiences when it finally happens it comes as a shock. I was washing my hair and as I did so I realised that most of it was either in my hands or in the bath. Huge handfuls of it leaving me with sore bare patches on my head. At first all I could do was look at it in disbelief, surely that couldn't possibly be my hair? Sadly of course that's exactly what it was and the more I ran my hands through it the more it came out so there was only one thing left to do - get rid of it all.

My husband is a dab hand with the clippers as he cuts his own hair, so over the course of an hour we cut and clippered away what was left. I guess you could say that a neat job was made of it but there is no way that I am going to say that I like it! It reinforces everything I've been saying to those around me - short hair doesn't suit me. Nope, it makes me look old and it screams out 'cancer patient' louder than anything else can. I know it will grow back but that doesn't help deal with the now.

I feel mixture of things - hatred of cancer and what it is doing to me on the inside, hatred of chemotherapy and what it is doing to me both mentally as well as physically but a little voice (and tonight it really is a little voice) is also saying that if my hair is falling out maybe that's a sign that the chemotherapy is actually doing its job. . .

I have week to go to my second course of AC and the thoughts of having to go through the whole sickness, oral mucositis crap is horrible but what are the alternatives? All I can say right now is that I've managed to survive cycle #1 which means that there are only 7 left to get through.

Sunday 2 January 2011

Through a Mirror Darkly


The last couple of days have been dark ones as I try to come to terms with the side effects, both physically and emotionally, of the chemotherapy. In some ways the emotional ones have give me far more problems than the physical ones.

Whilst I was prepared for the nausea and the tiredness, I wasn’t prepared for the more subtle effects like the drastic change in my taste buds, the development of a highly sensitive gag reflex and the large numbers of mouth ulcers that make it difficult to talk, eat and sleep. I was told that not everyone gets the same set of side effects, not everyone gets all of them and that it can affect people in a very individual manner – they weren’t kidding!

But to be honest the worse thing has been the emotional side of it all; the sudden bouts of deep depression, the feeling that this is all too horrible to bear and the episodes where all I want to do is cry. Not gentle crying either but deep racking sobs that seem to tear themselves out of my body no matter how hard I try to hold them in. They are born out of a despair at facing several months of all the crappy side effects but they are also a sudden deep-seated anguish at the possibility of a life cut short before I’ve done all the things I wish to do. It’s a kind of grief I have never experienced before, not even on the deaths of a deeply beloved father and grandmother twenty months ago. It’s the recognition that I have cancer, a serious kind of cancer, which will hover in the background of my life and thoughts permanently from now on.

No one is ever cured of this type of cancer, you simply do what must be done and count each year at time, in the hope that every time you go for a check up the doctor will tell you that there is ‘no evidence of disease.’ Invasive breast cancer in one breast leaves you much more vulnerable to a new primary diagnosis in the other breast. Its cells are also more pernicious and sneaky; they will often pop up in other parts of your body, so life becomes an almost continual round of checks and examinations to catch the little bastards as soon as they start causing trouble.

I think the enormity of a life coloured by this knowledge has finally started to sink in and of course it is all deeply frightening. I find myself wondering how exactly I am going to cope with all of that and I also worry about how it is going to affect those around me. Particularly my husband who is of course deeply distressed by the whole thing; it’s awful for him to lie in bed at night listening to me sob my heart out and feeling powerless to do anything about it. A nightmare for both us and I thank my lucky stars that we have a strong, enduring love for each other that will hopefully see us through those really dark and difficult moments.

I want to smash this dark mirror or shine a bright light upon it in a bid to dispel the black thoughts but at the moment I just can’t quite bring myself to do so. I hope that I can find the courage to do one or the other soon. . .