Deep and Meaningful.....

(11)

This is probably the most difficult blog post I have to write.

I don't want to seem as though I have all the answers because of course I can't possibly have all the answers for everyone because we're all so different.  Our disease is different, our bodies are different, our home lives are different and our treatments are different.  All I can do is talk about what keeps my spirits up ....most of the time, but not all the time, because MBC is a horrible disease; there's no denying it, and because I will be taking treatment every day for the rest of my life.  At the moment my scans show "stable disease", meaning it's no worse than it was when I started  treatment seventeen months ago, but neither has it improved.   I don't want to upset that very delicate balance just because I'd like a break from the side effects.  There's no time off for good behaviour!  At times, the fatigue, low blood count, night sweats, muscle and joint pain, cold sores, mouth ulcers and sore gums overwhelm me.  I'd like to have the amount of hair I used to have, too.  While, unlike chemo, hormonal treatment doesn't cause complete hair loss, it does cause enough hair loss to be noticeable - probably not so much to other people but to me it does because I know how it used to feel and I know it will never feel like that again.  Does this seem vain, trivial and petty?  Probably, but I vowed to myself when I started this blog I'd be honest  so that other women, if they feel the same way, will know they're not alone in this.  And my fingernails! I also know that they will always have such deep ridges along them that the ridges will actually crack open and that they need to be filed every day or they will break but that they break when I file them!

These might seem like small matters but, when you live with them day in, day out and struggle to make the best of it, there are days when they seem very important.  They're not, of course.  The whole reason for taking the medication is to stay alive and I have to constantly keep this in perspective and not take for granted the fact that the medication is so powerful that it can actually allow me to live for much, much longer than I otherwise would.  This is what I'm told and this is what I believe. With every part of me, I believe this treatment will give me many years longer with my loved ones.

Another side effect of the treatment is mood swings.  Because the hormonal treatment I'm taking causes a very large drop in my immune status each cycle, there are two to three weeks out of five when I'm so fatigued that everything I do is so difficult I feel myself becoming lethargic and that's not a bit like the real me!  When your haemoglobin level drops below 100 it can cause shortness of breath, dizziness, tiredness and weakness and, when your physical state is so far below par,  your mental state can easily follow.  You simply can't do the things that would help to pick you up mentally.  Add to that the isolation that comes from the need to avoid infection, making it best to stay at home, creating a heavy reliance on friends and family for entertainment, and even the most independent minded person (that's me!) can become a little unhinged!

Then there's the need to avoid cutting yourself and being vigilant about hygiene should there be any break in your skin's integrity and the instruction to take your temperature every day and to go straight to hospital if it's over 38 degrees centigrade.  It all gets a bit tedious!  Once that part of the cycle is over and I can go onto a new treatment cycle my spirits return and I'm much more like my usual happy self.  I know my family sighs a collective sigh of relief because I'm less touchy and they don't need to be so careful not to say one word the wrong way or have an expression on their face that I'll interpret negatively!

I'm normally very upbeat and chirpy and I've never been a worrier but at times this situation overwhelms me.  Sometimes, usually at about 3am on a sleepless night, it fills me with horror and my way of coping with this is to allow myself to put my head in the sand for a while to give myself a mental break.  I really can't see anything bad or cowardly about doing this.  But then, when I feel ready, I pick myself up and get back on with living because I don't want to miss out on one single good moment and I intend to use this MBC experience to make a difference somehow to someone, which is why I'm writing this blog. I have to give my life a purpose!  Otherwise, I'll be asking myself what I'm doing here, unable to contribute very much to people's lives in a physical way.

I've had to work at accepting that this is my life now, not only for my own sake but for the sake of my family and close friends and that I have to make the best of it that I possibly can.   I had to find a way back to being the laughing, joking, teasing me because that's who they're used to and that was who they were missing while I was off with the fairies until my brain adjusted to the opioid medications I need for pain.

Although I'm not normally a worrier, I'll be honest.  I'm no different from any other cancer sufferers (I hate that term but in this context I guess it's true).  I have to admit that at the back of my mind is a little niggling worry about the possibility of Letrozole/Femara and Palbociclib/Ibrance, my first line treatments, failing because I've been warned of the likelihood of that happening, in which case I will have to switch to different drugs to keep me alive.  Then my mind wanders to the worry of whether there will be sufficient new drugs coming along in time for me.  Research is a wonderful thing but it takes time and every new drug has to be trialled in a double blind study for a long enough period of time to prove its efficacy..........  but when I get to that place, which I don't do very often at all, which I don't allow to happen very often, I quickly call a halt to my musings because it's futile to worry and worrying takes away my joy.

I will mention again the book that started me on the path of being able to control my thoughts because having that ability was what changed everything for me.  I had already read the book before my diagnosis, for which I'm grateful, because it took away the fear that most women say they felt when diagnosed.  I recommend it to anyone I meet who is struggling but I have a sneaking suspicion that not many have taken my advice.  It's not an easy path.  A lot of people would rather not read a book that suggests exercises in meditating, nor do they want to meditate, but I will continue to say that this is the most worthwhile project I've ever undertaken and, that once mastered, it gives you control over your thoughts.  We all know, whether we have cancer or not, that we have no control over what can happen to us in life but I know that it is possible to change your way of thinking and, with that come the opportunities that open the door to joy and happiness again.

"Mindfulness: a practical guide to finding peace in a frantic world" by Mark Williams and Danny Penman.  The free CD included gives eight meditations which you learn over eight weeks, starting at number one.  If you're prepared to give it a whirl, you really can find that peaceful place.

Getting down to the bare facts for a moment, we all know that Metastatic Breast Cancer is a killer.  We all know that it's MBC that causes women to die, not the earlier stages, therefore those of us with MBC know that our time could come and probably will unless something else comes along before MBC claims us.  But my greatest wish for women like me who have MBC is that we can find our joy despite the fact that our lives are changed forever and that we will live with pain, side effects, debility and a degree of disability, depending on where we are on the MBC path.  How we cope with that knowledge is up to us.  Hopefully, we will have people who care enough to tread the path with us who do not wander away because something else claims their interest, because it gets too hard for them, or because it's not happening to them and they can choose not to be involved.  I count myself as one of the fortunate ones because I have a husband, son, sister, nieces, nephew and some very loyal friends as well as many others who genuinely care  ~

If you have any questions or suggestions you may email Leapfrog at: positivetrialsblogspot@gmail.com