Getting It Into Perspective

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This is the way I see my Stage IV breast cancer now.  There comes a time when you have to take stock of what has happened to your life and how you want to view it.  I feel that I'm extremely fortunate that my disease spread to my bones and not to organs because I've been told that bones contain the tumour for longer, which is a bonus.  What isn't a bonus is that metastases to the bones are extremely painful; unbearably so, and it's impossible to carry on with normal life with the degree of pain that tumours in the spine generate, once they've caused nerve damage especially.  The bones might contain it but, in doing so, they are stretched almost to breaking point, depending on how large the tumours are and this causes stress fractures.  My metastases are in my skull, neck, shoulders, sternum, ribs, spine in several places, hips and one femur and is referred to as extensive and widespread.  Now that I've been taking Letrozole for two years and have had Denosumab injections every month the stress fractures are healing.  Letrozole is a tablet that is taken every day to deplete the body of oestrogen and Denosumab is given to strengthen the bones and help kill the cancer cells.  Letrozole weakens the bones, which makes Denosumab even more necessary so I'm careful not to miss a monthly injection, even though it's fairly painful and, at times, I cringe away from the needle.  I've never been afraid of injections but when that needle approaches my tummy (yep, that's where it goes!) I have to summon up  my courage.  It seems crazy because I have two blood tests every month and when I have scans the phlebotomist always has difficulty with my veins and I've had many unpleasant moments with those without even flinching,  but the thought of that needle in my tummy freaks me out!

Having wandered  completely off the story I intended to tell in this post, I will now try to make my way back again about taking stock of my new life and making a decision on how to approach it, mentally, emotionally and physically.  Yesterday I was talking to someone and I said that I've lived a lifetime in the last two years and, even as I said it, I was taken aback because those words just came out of my mouth without being uploaded from my brain.  And how true that is!  That really is what it has been like.

Receiving a diagnosis of incurable cancer and the accompanying advice that you will be in treatment for the rest of your life and that, at some stage that treatment will (I prefer to think "might") fail cannot help but change you.  Whether or not you can tolerate the treatment is not a choice you make. You have to tolerate it if you want to live.  There are no days off for good behaviour.  Whether or not you like the treatment is something you just cannot even begin to think about as it is the only thing standing between succumbing to the cancer or not.  The treatment I'm on, being cyclical in nature, naturally causes fluctuations in mood as it causes enormous fluctuations in body chemistry.  As the blood count lowers all levels, it causes fatigue - not tiredness that recovers with rest but deep down fatigue, such that even sitting up in bed is a huge effort.  This happens quite suddenly as levels drop and I haven't yet become accustomed to this suddenness.  One day I'm up and able to do things I want to do quite easily, the next I'm an exhausted wreck, fit for nothing but several days in bed dozing on and off.

I have to admit that the thought of this happening every three weeks and lasting for two weeks for the rest of my life is daunting but of course no more daunting than the alternative.  I'll be honest because this is a blog designed to educate other women who are interested in learning what it's like to live with Metastatic Breast Cancer and say that this is very frustrating and difficult to learn to adapt to.  It causes mood swings as the effect of the pain killing drugs in my system changes throughout the cycle, causing unpleasant thoughts that I have to work hard to control.  During the "up" period of the cycle I feel exuberant and happy, very much as I have always been but then the "down" period of the cycle comes along and, along with my blood count dropping so does my mood.  I often feel, quite without any evidence at all, that no one likes me:  patently untrue!!  As is demonstrated by the love and kindness of my friends but it's there nevertheless so I have to keep a watch out for it before it catches me out.

The sadness that the thought of never driving my gorgeous car again is something I have to just accept, like it or not.  The lack of independence is the same.  In my heart I keep feeling that one day this will all disappear and that it will have been a nightmare I will waken from but it isn't.  It's something that I will have to learn to live with.  To need just one small item from a store and to be unable to go and get it is so frustrating that I have to sit myself down and give myself a talking to, telling myself that I'm not alone in this and that others are far less mobile and independent than I am. At least I can get out of bed; a lot of people can't, I tell myself and I remember that just over two years ago I was one of those people, with many people are a lot worse even than that.  If this seems incoherent to read, I am doing it deliberately to emphasise how much the treatment affects my usually quite sane thought processes!

To have to wait for things to be done for me and to know that it would be unfair of me to remind my carer son that I want it now is another challenge.  He is already doing as much work as he's capable of fitting into a day and we both know we have a long road ahead of us which is not going to become easier so I curb my impatience.  I'm writing this post during the lowest part of my cycle deliberately so that it is honest because I know that I should go into an upswing during the next week and I will forget how bad I feel during this spell......which is a good thing!  I'd hate to feel like this all the time and I now know that this is temporary, albeit something I will deal with for the rest of my life and I intend that life to be a long one.  I have no intention of being amongst the 75% of women who succumb within five years.  I am going to survive for at least ten years, hopefully more.

The side effects such as blurry vision, broken, cracked fingernails, mouth ulcers and cold sores,  night sweats and achy legs I can deal with, no problem.  The fluctuations in mood are much harder to cope with.  This is where the support of friends comes in.  Just to see a friendly smile, to know a friend has gone out of his or her way to call in and visit me, has thought of me and bought a cute little toy or a plant cheers me out of all proportion to the intention of the friend.  That thoughtfulness can have me  smiling for days and nights on end.

I am now at that stage which I knew would one day happen; the stage when many people realise that I'm playing a long game here,  that this is not going to be dramatic and quick.  It is not going to change suddenly and become a fight between life and death overnight.  I will be living this kind of lifestyle for, most likely, many years.    

The very few people who have not realised how much I need their kindness saddens me, not for myself but for them because one day they might be in need and karma has a way of catching up eventually but to the handful of friends who do visit regularly I say "May you be blessed as you have been such a blessing to me." ~