One year on….

I have had to really think long and hard about posting these next two episodes in this story of mine. 98% of me says I shouldn’t. That teeny 2% of me says that perhaps it will be useful to someone, somewhere.  Apart from the odd occassion when I let slip to a friend or member of my family that all of this is not yet in the past, that it perhaps never will be, I like to give the appearance of being ‘so over it’. I like people to think that the last year was just a wee blip that is now a distant memory. I also hate to burden other people with my low moments. Today I had my zoladex injection and as a consequence I am feeling a bit low and so perhaps posting here is the last thing I should be doing. But one think I try to remind myself when dealing with strangers, is that you don’t always know what is going on behind the smile.

Yesterday, after a few weeks of miscommunication with the hospital after my one year mammogram and lost results, a missed appointment that I did not even know that I had and weeks of worrying, I eventually found out that I am one year in the clear! Great news and although I did not expect the news to be any different, it was still a huge relief and the chance to shed a weight that had unbeknownst to me been weighing on my shoulders for the past few weeks. There is such a mix of feelings that comes post-treatment and really, it is hard to put into words how this has impacted on how I feel about the past year but here goes ….

So… here we are. One year on, or thereabouts. More than a year since my diagnosis and surgery and I have managed to accidently-on-purpose dismiss any of the ‘one year anniversary’ dates surrounding this whole part of my life – until now. It is fair to say that the last few months I have spent so much time trying to get on with my life and move forward that on more than a few occassions I have had to remind myself that any of the story happened atall. Of course there are always the wee reminders that pull me up short – that horrendous monthly injection being one of them; the never-ending TV adverts* for cancer charities and that awful sadness that comes with hearing that yet another wonderful person has left this life too soon.

In general, it is easier to almost pretend that nothing has happened. There is really no way of explaining that, as well as I think I have coped with the last year, there are occassions when my mind plays tricks on me and drives me a bit loopy with its twists and turns. When, without warning I can find myself worrying about this or that ache and pain and the difficulty in sometimes accepting that there will always be a tiny part of me that worries the cancer might someday return. The suprising thing is that in a way this causes me to have the opposite reaction than the one you might expect. Indeed rather than panicking and trotting off down to my doctors surgery for every little niggle, I instead found myself suffering for months with an exptremely painful upper arm/shoulder before eventually admitting defeat and seeing my G.P about it. The fear of it being cancer was over-ridden by the fear of appearing over anxious and looking like I was worried it might be cancer. (The G.P diagnosed some ligament strain in my shoulder and arm incase you were worried!)

I keep telling myself that I don’t want to be one of those people who spends all their waking hours fearing a recurrance (if indeed there are any people who are that fearful) but I also (in secret) worry that I have built this up in my own mind so much that if there was ever any niggle that I was truly worried about, I would be too proud or stupid to actually seek advice for fear of looking as if I have become a cancer-hypochondriac. I am guessing that over time, this will all become easier, the worries will diminish and I will get to that place of knowing that just like for anyone, good things happen and bad things happen, you just can’t spend your life worrying about it. Nor should I be in denial that because I have had treatment for cancer it has given me some kind of super-resistance to a possible recurrance. I just hope to find some kind of balance where I can recognise niggles for what they are and go to the doctors when I feel the need. It will just take time.

So even after treatment and recovery, the process continues – that putting one foot infront of the other, living life, appreciating all that I have, not worrying about things I cannot control and making sure that the life that I am living is the very best it can be.

* I just wanted to explain this as I worry that I seem ungrateful. I have been helped and supported by some of these said charities and I am and will always be grateful for all that they do. They are an absolute god-send when faced with an uncertain future and a fearful present. I am equally grateful for all who donate to these charities and I of course realise that advertising is a necessary route to creating awareness and getting the word out. It is just that when you are feeling a bit low and you want to lose yourself and be distracted by a bit of mindless telly, the images of bereft relatives, sufferers and survivors of cancer which come every 10 to 15 minutes during the ad breaks can become quite upsetting. I don’t know what the answer is and of course I would not want these charities to change what they are doing – it is just hard to be reminded sometimes.

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The story continues …. appendix 2

Edit – well it is now mid-July and although appendix 1 and 2 were written in May I had never gotten around to publishing them or writing more – so much has happened in that for the most part life is back to it’s blissful norm and I am loving it! But for the sake of completely moving on – so these ‘update’ posts will occassionally make an appearance….for now….

Just a wee note – I got so behind in keeping up with this blog that I these posts are catch up posts and so are invariably long and possibly a wee bit long-winded! Hopefully once I am all caught up they will be a bit easier to read and not quite so waffly! Thanks for your patience. x

So where did I leave things? I guess the last real post about my treatment was this one – a few weeks post surgery, just newly married, having started my hormone treatment and awaiting a start date for my radiotherapy treatment. That is a very quick summary of where I was at! So this post – the hormone treatment!

I have struggled all along since starting my hormone treatment. a once a month injection of zoladex – well perhaps injection is not really a great description of it – it is really a whopping great needle putting a pellet into my tummy which hurts like hell! Apparently the fact that I have a bit of ‘padding’ around the tummy area means that it shouldn’t be so bad so for once I thank my lucky stars that I am not a model size 8, 6 or whatever the ideal size is for my diminutive height.

Anyway – that lovely dose of hormones has the delightful effect of turning me into either a sobbing mess or a screaming monster for anything up to 3 to 5 days after. Wonderful. I have taken to trying to convince Mark that he would be better to plan weekends (or a week, or half the month?) with friends after every fourth thursday as I desperately hate the person I become during that time. He is a glutton for punishment though and is sticking it out so far – poor soul. I am sure there are those out there that thing PMT is a myth, an excuse for a woman to have a few days a month where etiquette and niceties can fly out the window and a demanding, explosive, irrational being can take the place of a formally relatively normal human being. Although this is not PMT (as I am now in the menopause – albeit a drug induced ‘fake menopause’) that I am going through, I think the effect on mood and emotions is pretty similar, although in my experience it is multiplied by 10. It is horrible, I become horrible. Thank goodness that as I am writing this I am about to have my 9th injection. As I am on zoladex for 2 years I am already over a third of the way through!! Although that is in itself something to celebrate, such is the impact that it has on my life I am in the same breath cursing the fact that I still have 15 to go. I am never one to wish my life away, infact I am constantly acutely aware of how fast the days go and that I want to grasp every moment and experience it fully, but bloomin heck I will be celebrating on the day that I have my final zoladex injection!!

PS – if you would like to read more about zoladex there is a very medical description here (also describing it’s uses in men with prostrate cancer as well as in the treatment of woman with endometreosis). Macmillan cancer website have a much more user friendly description and information of zoladex here.

I should also add that the effects that I have had with zoladex are my own personal experience and not necessarily the same for everyone. Perhaps I am just a wee bit loopy anyway and this has just brought out the worst in me!

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The story continues….. appendix I

Edit – well it is now mid-July and although appendix 1 and 2 were written in May I had never gotten around to publishing them or writing more – so much has happened in that for the most part life is back to it’s blissful norm and I am loving it! But for the sake of completely moving on – so these ‘update’ posts will occassionally make an appearance….for now….

For the longest time I have been struggling with trying to figure out what to write here. As I described before, I got so tired during my radiotherapy treatment that the thought of trying to put into words the process and how I was managing everything, just all seemed too much – the longer I left it, the harder it became to come back and write about my progress.

Then once I finished my radiotherapy treatment my thoughts were, ok so now it is all over and I have nothing to write. Now I realise how wrong I was. It is hard to describe all of the feellings that have been whirling round my muddled brain these last few months but as I have come to realise that this journey is not yet at it’s end, so I also realise that this place, this space still serves a purpose. I am not entirely sure in my own mind that I know what that purpose is. Is it for example a place for me to vent and have somewhere to come to in order to get all my worries and anxiety out of my system without feeling as if I am boring those closest to me and taking liberties with how long they are willing to continue listening to my story? Is it for me to describe in a practical and an emotional way all that has and is still happening with the thought in mind that someday someone whoever finds themself on the same path can know that they are not the only one? Or is it a personal diary that I just happen to share in public so that those that know me and those who don’t can try and keep up with what on earth is going on in my head at any one time without me having to try and articulate it when I don’t really understand it myself!

I guess at the end of the day it is all of these things. The presumption is, that once you walk out of your last hospital appointment, that you are cured, that you are ‘all better’, recovered, cancer free, done and dusted. Before going through this myself I guess that is what I believed when reading about breast cancer. Life goes on, of course it does. Life is wonderful and of course it is so much better now that I have finished the active part of my treatment. But the journey does continue, and there is more of this story to tell.

So these next few posts will be the appendices – until I get up to date and back on track! The other thing that I hope to do is also to begin putting in highlighting some of the websites and resources that have helped me over the last few months for anyone who needs them or would like to pass them on to someone else gonig through similar experiences.

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A Treat …….

  I have been thinking about writing here for so long but my stubborn nature meant that in my determination to put the last year behind me, all I really wanted to do was to move on forward and try and forget about all that had happened. For the most part I had managed to do that – on the surface at least. But there was always that nagging feeling that this all felt a little ‘unfinished’ and that there was and would be more to write. Then I broke down in tears when talking to a friend last week and I realised for certain that actually there is more. Whether anyone will read it does not really matter in some ways. Primarily this blog is for me to gather my thoughts and experiences. Should anyone happen to stumble across this place who is going through the same or a similar thing, then I would like to think they would find a thought or two that will help them along their own path.

So there is a huge gap of a few months to possibly fill but I shall not tackle that today – instead I shall write about what is on my mind today and then I will hopefully return to cover old ground and get back on track to writing about what is going on now.

I  have a treat planned for this afternoon. I am off to the hospital again – not for the endless days of treatment that were my journeys to the hospital at the end of last year – but this time for an afternoon of a skin-care and make-up workshop which is called Look Good Feel Better. For some silly reason I feel slightly shy and nervous about this. I have always loved make-up although I have found since working from home for much of the time recently that I wear less and less. But I know that I am looking forward to a bit of a boost. The weight gain from the hormone treatment (none of my clothes are fitting me and I have no funds to buy more) and the fact that my skin seems to have aged about 10 years in the last 6 months along with my desperate need for a hair-cut (although of course I am so grateful to still have my long hair) mean that I am not exactly feeling at my best.

 I guess what I am most nervous about is the fact that I feel more emotional and delicate about the whole rollecoaster ride than possibly at any other time since my diagnosis. I have tried so hard to put it all behind me but tears come easily and the frustration of ongoing fatigue means that I don’t feel quite me. Spending time with other people who have been through the same experience is a reminder that it all really happened and that no matter how much I try and forget it and move on, there will always be occassions where I will be forced to think about this last year and the repercussions that it has for the rest of my life. The most obvious of these being the uncertainty that we will ever have children. The other is the worry that it will come back.

There is so much good in my life right now. I am by all accounts cancer free. My relationship with Mark is spot on, my work is picking up again after a difficult year whilst dealing with this illness. The bunnies make me laugh every day. I have many people who care about me and I am thankful for all I have. I guess the difficulty with writing this blog is that this is the place for me to vent and share my worries and get a bit emotional – something that I try so hard to not to do in my everyday life. That results in this place seeming like the hub of all that is negative and for anyone coming here – they might think that this is me all of the time. But if I am to continue to keep my other blog and this one separate then that is the risk that I run.

Unless your read both blogs then there is no way of showing that there is a balance and that I am always hovering somewhere between the two. I could twist myself into knots thinking about it! There is also the fear (that I have never quite been able to get my head around) that really should I be writing about this in such a public way anyway? Will people think differently of me, knowing my innermost thoughts. I guess the idea that no-one reads this is a big help with that problem!

Anyway – I have finally come here to update and that I shall do over the coming weeks. I have also acknowledged that there is still more to write even though the worst is over. Now it is off to the hospitable for that treat and to return with a smile and get back to the studio to painting – another of things that I am most grateful for.

xxx

 

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A quick catch up.

Oh gosh I don’t even know where to begin in writing this post. It has been so long, far too long since I have updated here and goodness knows if there is anyone still checking in!

 Can I say that I have 2 excuses? (I hate making excuses although I suspect I do it all the time) Oh well, I know there is no justification needed but 6 weeks of broken internet left me without the resources to continue telling this story here and the internet-less break and subsequent 7-and-a-bit weeks of radiotherapy just made it all the more difficult to re-focus and re-start writing. The longer the break went on the harder it became to get back to it.

I have been writing snippets of the last 3 months down on paper and so much more of it is in my thoughts and waking dreams. This week I had wanted to get bang up to date in recounting the last few weeks so that I could begin afresh in 2011 but for one reason or another it has not happened, however I have promised to not give myself a hard time over it and do mean to fill in the gaps soon.

In the meantime I just wanted to say that I am well if more than a little exhausted and am generally moving a lot slower than is usual for me. I am resting and reading, pottering and lounging, crying in frustration at how little my body will allow me to do at the moment and wishing to regain my strength so that I can get on with all the things I want to do!

I will be back here in the new year, but in the meantime I wish you and yours a happy, healthy and joyful New Year and 2011. We shall be celebrating quietly at home with our bunnies if I can make it past my current bedtime of 8.30(ish). Cheers to a wonderful 2011 for all of us!

 xxxx

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Breathing out………………

Thinking about and getting round to writing this blog post has been a little like taking an inward breath and then just letting the air escape ever so slowly ………knowing there are many things whirling around in my mind. Some thoughts are obvious and ever present, others are like ghosts of things that once appeared so clear and ‘of the moment’ but are now only half remembered. I had an idea of what I wanted to write but in truth there is not very much going on at the moment atall. This does not make for the most inspiring or interesting blog writing or reading.

So for the moment I shall just lead you to this blog post about our wedding day which already was a whole two weeks ago. It really was the most wonderful day and although we have been together long enough for it to not have made a huge difference to our relationship, in reality I am amazed that I am now a Mrs – at 38 years old it may take a wee while to get used to that! I haven’t exactly been rushing around changing my name in any official way but friends and family seem to be taking great delight in calling me Mrs C.

on our way

Now I am playing the waiting game again. I commenced my hormone treatment last week (Zoladex injection every month for next 2 years and Tamoxifen tablets for next 5 years) both of which mean that I am now into the menopause. This goes a long way to explaining my lack of writing over that last week or so and my mood. I have spent the last week feeling like a hormonal, big blobby, sobbing mess and have had trouble focussing on just getting on with things. Perhaps the sobbing is a slight exaggeration but there have certainly been many tearful moments as I adjust to life in the present. Whacky dreams that frustratingly I can’t remember in any detail but have enough snippets to know that my loop-de-loopiness remains intact (they would make marvellously entertaining blog posts I am sure). Perhaps my current reading choice is providing inspiration? Gosh I love Margaret Atwood. I know that I should perhaps read something more cheerful and chirpy but I almost always turn to books or films with a hint of melancholy at the best of times.

Poor Mark – not exactly an ideal atmosphere for week 2 of married life. Tis not all bad though – there is plenty of laughter and hugs inbetween my moments of acting like a tearful petulant hormonal teenager. Is it really just in my own mind that these two distinctly different periods of life seem spookily similar? However the last few days the hormonal rollercoaster has been easing into an equally unwelcome feeling of flatness (Uuugh…..a flatness which I feel is so evident in my current writing – I am really hoping it does not last too much longer! I want my chirpiness back!) So now I am waiting to begin radiotherapy which is not going to be as soon as I had first thought but again, this experience is teaching me patience. The hospital had thought I would be starting next week but I don’t even have my initial appointment with the radiotherapy team yet – I guess these things take longer that I had anticipated which is frustrating for someone like me who likes to know what I am doing and when so I can look ahead and figure everything else out around ‘what must be done’. Meanwhile I am making every effort to ruffle up those current moments of flatness with quality time with friends and loved ones and trying to get back into a creative frame of mind.

xxx

Posted in being good to myself, Treatment, Wedding | 2 Comments

The strangest day… (II)

The emotional bit……………

So results day yesterday, good news….much better than I could have hoped for and so we returned home. Now if I thought any of my previous posts were difficult to write, really they don’t even begin to match up to the complicated tale I have to tell today. In fact it has taken me the best part of the day to even begin writing and it still all feels a jumble. I haven’t a clue how to even begin explaining a day in which my reactions bore no resemblance to my expectations of myself upon hearing such news. So I ask you to bear with me in my rambling and if by the end of this, you think me slightly crazy or self-pitying…………..well………….

So on a day when I would have expected to be having a wee celebration at the good news, I found myself in tears and lost, not knowing what to do with myself, behaving atrociously towards Mark and just altogether out of sorts. Now if any of this were rational, I could perhaps put the tears down to feelings of relief….but no, nothing about my emotions yesterday was rational. Of course needing an explanation for the inexplicable, once I finally settled down (after a self-imposed afternoon of solitude) I sought to pull my thoughts and emotions apart and tried to figure out what the heck was going on. I cannot take complete credit for this as I was greatly helped by a phone call to the wonderful Macmillan Cancer Support help line where I began feeling as if I might have been losing my mind and finished, realising that in all of this, there is no ‘abnormal’ or ‘right or wrong way to feel’. Perhaps these are phrases that are dished out to every caller in every situation, but I can tell you that the calming conversation with a lovely lady on the other end of the line, worked wonders with reassurances and emotional support. So now to dissect and try to understand.

Now pretty much as soon as I received my diagnosis, I began to see my treatment and recovery as a series of steps, to be taken … one …at… a… time. Each time I tried to jump ahead my brain would begin to whizz and whirl and send me into a frenzy of ‘what if’s’  and second guessing.
Very quickly I made a conscious decision to focus on the next thing and leave the future till later. During my diagnosis appointment and pre-op appointment the general consensus was that it was pretty much a given that after surgery I would be receiving chemotherapy as a start to my process of treatment. In the weeks of waiting for my pathology results I began formulating an action plan for getting through chemotherapy, even so far as making decisions about what to do with my hair when the time came (no flushing my pride and joy  down the loo here – I was going to get it shaved off and do something positive!) Now of course in hindsight I can see the obvious flaw in my reasoning here – in my efforts to just focus on one step at a time, and with my incredible talent for impatience, and in an effort to grasp a tiny ounce of control over my future, I had not realised that I had actually jumped one step ahead already! But hey-ho – I am a complete novice at this whole thing and I guess mistakes and miscalculations are inevitable!

 With the very little information that I had received, I had the next month all figured out. I read extensively about chemo and also read the stories of others in my situation. From all this reading, I began to figure out (or form my own very personal opinion) that amongst most of the common fears upon a cancer diagnosis is the fear of dying and the fear of chemo. Now I can honestly say that the first of these has never even entered my head…not even for a nano-second. Even fearing that my cancer was a possible Stage 3, I have never doubted that the treatment would work for me and I would make a full recovery. As for the chemotherapy, of course I appreciate that it is a horrible thing to go through and much worse for some than others. I don’t underestimate how difficult and debilitating it can be. I just knew that of all the things that I could possibly fear with this situation, chemotherapy is not my monster-under-the-bed. Hair loss is temporary, sickness can come and go – everything for me felt do-able. So I guess in a round about way that brings me to the thing that does make me feel that this situation sucks beyond all reasoning even after receiving the ‘good’ news. My kryptonite if you will. The reason for my melt-down yesterday and the implications of the  future steps that had not yet appeared on my horizon of understanding.

Yep, that old chestnut …… fertility.

(PS – okay as this post has turned into a novel and it is 1.15am I will continue hopefully tomorrow (today)  All this is so hard to write about. I want to be open, I worry that I write too much, I fear that folks might think me self-pitying, that people I know may think different of me. But I am determined to follow this thing through…………..so please bear with me)

(PPS – every time I have a wobbly about the fact that I am writing this blog and wonder ‘who could possibly be interested in the loop-di-loopiness of my current crazy life’ and think I should keep all this to myself and stop writing, I look at my blog stats and see that folks are reading (so many more folks than I could have ever imagined) so I guess I shall continue….)

(PPPS – I do have more to write about my pathology and my reactions to it and I am determined to get it all down in the blog so that no parts are missing – but I may not get to this straight away. After all – I get married in around 37 hours time!!!!!!  So perhaps the continuation of this post may come after a wedding post – I reckon that is a fairly justifiable excuse for leaping from one subject matter to another – don’t you?)

xxx

Posted in facing the unknown, Results, Treatment, worrying | 1 Comment