Almost Two Years

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In a month's time it will be two years since my diagnosis.  Two years!  It seems almost unbelievable that time could race by so quickly but it has.  This seems like a good time to think about my progress, both physically and emotionally.

Starting with physically, because it's easy to summarise, the treatment is still controlling the cancer; only just but it is controlling it.  I've had regular three monthly CT scans and bone scans with the occasional extra bone scan thrown in if we're concerned and every time the bone scans are reported as stable, which means that the tumours are no better but they're no worse.  Every time I'm told that I sigh a sigh of relief because when you have MBC "stable" is good news.  There has been no new growth in the tumours, there is no new activity and there are no new tumours; everything is just as it was the last time and the time before that going right back to my operation.  The CT scans have all been reported as showing no cancer in the organs and that news earns an even bigger sigh of relief!

I'm now more active physically, although that is a relative term; relative to how I was in the beginning when I was almost completely immobile.  I can't fend for myself.  My wonderful son still shops and cooks for me and does those things that require a lot of reaching, bending and standing but I can look after myself during the day, get myself a snack and do some light chores which were impossible until a few months ago.  Very gradually my strength is returning and, although I tire quickly, I now recover more quickly than I used to.  I used to despair that I would never be independent again and it's true, I won't, not the usual definition of the word "independent" but it's satisfying to be able to spend the day by myself and not need someone to bring me everything I need.

Three months ago my tumour marker took a leap upwards and my heart took a corresponding plunge downwards as a consequence because it appeared that the treatment regime might have reached its use by date.   It's well known that hormonal therapy usually fails as the cancer cells learn to sidestep its blocking effect and, with my tumour marker seemingly warning us that that could be happening, it was a worrying time.  My oncology registrar told me that if that was the case, there was only one more hormone treatment in the treasure chest and, once that failed as fail it eventually would, there would be nothing left to offer me except chemotherapy to prolong my life by six months or so.

We left with grim expressions on our faces as we absorbed this news because I was also told that the new regime of hormone therapy would not last as long as the first one has.  We were looking at another year, maybe two at best because I see no benefit in using chemotherapy to prolong a life that isn't worth living.  We discussed this as a family and I made it clear I have no intention of finishing my life as an unrecognisable form of myself, kept alive by poison.  As a disclaimer I have to say that I'm by no means trashing chemotherapy as a form of treatment if it's used to actually cure a tumour in someone who can go on to live a useful life but, with Metastatic Breast Cancer, that wouldn't be the case.  Chemo doesn't cure it and MBC doesn't go into remission.  This is my understanding of the situation, anyway, and it was what was influencing my thinking then.

My thinking has now radically changed because at my next appointment I was given the news that my tumour marker had dropped by 110 points again, which was well down from the previous month's level and, best of all my bone scan showed everything is still stable.  How I love that word!

So, what is it that has brought about the epiphany I had?  A few things all happening one after the other.  Sometimes you have to hit rock bottom in order to pick yourself up again and sometimes you need events that are bringing you down to make you take stock of your life and decide what you can control and what you can't and what you can do about it.  Being told I might have less than two years to live was what made me decide to act.  I have never, in my entire life, done anything that might upset or inconvenience someone else for no other reason than I wanted to.  I've always been a people pleaser and have always given way if it means unpleasantness or conflict but I realised that if I don't take control of my life now and live the way I want to I'm never going to and if that causes anyone else a moment of unhappiness that was their problem, not mine.  It was so liberating!  It was as though invisible chains had been removed from me and no one was going to stop me from now on.  I have the right to say, "I've done everything that's been asked of me until now and this is where I draw the line."  For the first time I didn't care what that meant for anyone else.  I was going to please myself.

I always had a secret dream of living in a small place on my own where I could spend time in contemplation with no one interrupting my thoughts or, on the other hand, spending time with people I love and having a quiet chat.  A simple life.  I saw an opportunity to do that and two days later, with a lot of help from my loved ones,  I was there.   I've always liked turning an empty space into a home and I was in my element.  I could only do a little bit each day but gradually a nearly empty apartment became a cosy home with a peaceful atmosphere and I loved it!  No one could deny me this.  How could they?  I felt safe and I felt I had come home to myself.

When a woman lives a family life she tends to sacrifice a part of herself for everyone else; at least that's what I had done my whole life, and I had lost the essence of who I really was.  Add to that a decade of being helpless and dependent on others for even the smallest thing and everything I could do for myself became an enormous achievement.  Each night I went to bed feeling satisfied and each morning I woke up feeling grateful for another day living the way I want to, with no pressure and no stress.  From there the feeling grew.  Because I was living in a smaller space than I was used to, I could do more for myself and the more I could do for myself, the stronger I became and suddenly I was a fairly close approximation of the person I used to be.  I still can't go out because of the risk of infection, I still can't drive because of the large amount of pain killers and I still can't do everything for myself but I can do enough to increase my feeling of satisfaction with life.

One early morning I was lying in bed thinking, as I do each morning, and it occurred to me that, although it hadn't appeared that way and no one would ever have guessed it, I had lost the will to live before I came to live by myself.  I, who have always had a huge zest for life and a hunger to live life to the full had, in the deepest part of myself, the part I didn't know was there, didn't really want to continue with life on the terms it had handed me.  I thought about it and I didn't blame myself.  It had been a hard ten or so years being an invalid when all I ever wanted was to be active and to continue to be the one who made life happen for my family.  It was a shock to find that I had lost this important part of myself but realising it was the first step towards finding it again and from there I embraced life again in no time.  I'm not sure whether anyone who knew me saw that this had happened.  I don't think they did.  If they thought anything they probably just thought I was having a bad day that day.  They would never think that I would have lost the will to live.  It was only love for my son that helped me to keep going and to participate in life to an extent.

Now I wonder just how many people who are forced to live the life of an invalid, not necessarily with cancer, but with any illness, deep down feel that way.  If I did, I'm sure many others do but I had hidden it from my conscious mind.

It was friends who brought me out of it.  Some did it simply because they were my friend and they kept everything the same.  They visited as always, talked about the usual things and made my life a part of theirs.  They treated me no differently from the way they always had, which is exactly how I want it.

I hear people who don't use Facebook criticising it as a juvenile pursuit and a waste of time and energy.  This has been far from my experience of it and I suspect that those critics don't actually know how it works and are probably afraid of the technology.  It's simply a very clever program that allows communication between friends to my way of thinking and it can be used for good or bad, depending on your proclivity.  My experience of Facebook has been more than positive; it has literally brought me new friends and companions and allowed me to catch up with my old friends more often than I would if I had to use the phone or visit.  Facebook has been my saviour.  I love to write and it's given me a forum for that.  I love people and I've made over a hundred new friends.  I love to learn and it's provided the means to do that, as long as I check the sources.  It can be fun, it can be serious, it can be boring some days but it has never let me down and I feel grateful for what it's given me; a truckload of beautiful people who care for me and let me know that every day.  Genuine, sincere people, each with their own set of problems, who have supported me every step of the way.

I have even met some of them.  One friend travelled seven hours by plane to spend a few days in my city so that we could meet and another friend from my city joined us.  It was as though we'd known each other our whole lives and the afternoon flew by.

What I'm fond of saying at the moment is that cancer took a lot away from me with one hand but it gave even more back to me with the other.  I believe that I've grown as a person and I have certainly developed skills that I never would have had time to learn if I hadn't been diagnosed with cancer.  Until now I spent my life under the misapprehension that if I didn't keep all my work up to date the sky would fall in, the house would crumble down to the ground and we would all die of malnutrition. If we didn't have fresh, clean clothes constantly replaced in our cupboards, heaven help us!  I couldn't allow such a thing as a used sock to be left lying around.  In other words, I was caught up in the ever revolving wheel that is the modern world.   I thought I couldn't say no to anyone's request for anything and that I was a bad person if I sat down and did nothing for a while.  Holidays didn't happen (not because I didn't want them to) because work came first.  I was caught up in a mad, crazy, whirling world and it's only now, that two years have passed in which I've been forced to rest but have been feeling reasonably well, that I can see all that.

I constantly urge other women friends who are twenty years younger than I not to do what I did but instead to take time out for themselves because I'm sure stress had a lot to do with my cancer progressing the way it did. ~