It's Not Easy But.....

(9)

Quite clearly there are two aspects to coping with a diagnosis of metastatic breast cancer.  I've described the early days of the first aspect, which is the physical aspect.  I still had a long way to go to achieve mobility and an independence of sorts; definitely not the independence I wish for, but at least a higher degree of independence than I'd had for the last few years.  That is gradually returning as I'm becoming physically stronger but the one thing I miss, that I long for, that I don't know how to cope without, is to be able to jump in my car and take myself somewhere.  People kindly offer to drive me wherever I want to go and I appreciate the thought but I've always loved driving and the inability to drive is an actual, physical source of pain every day.  It's something I have yet to come to terms with unless I find, when I'm in less pain, that I can do it again.  Currently, I'm taking a large amount of opioid pain killers which are necessary if I'm going to do anything physical at all.  The alternative is lying perfectly still in bed looking at the wall again and that's a place I don't want to visit again.  Until all the tumours in my spine regress, the pain and I are harnessed to each other so I've resigned myself to seeing the world through a fog and having a brain that stops and starts, depending on its mood.  I'm sure my driving skills haven't yet deserted me but my judgement of space and distance is highly questionable and I doubt other drivers would welcome me in their vicinity!  Not to mention pedestrians....  So that is one of the many things I tell myself I will do again One Day.

One Day is one of the places I visit frequently; in the same way I still visit Denial when I need to put my head in the sand for a while.  These are coping mechanisms I use, along with many others and, if I want to be the happy person I normally am (not to mention sane), I need to use these mechanisms when required.

How do I cope with being told I can no longer travel?  That's a hard one when everyone around me, it seems, is talking about where they've been and where they're planning to go.  I've always loved adventures and to think of never having another one is....well, unthinkable!  What do I do instead?  For me it works fairly well to "travel" via documentaries on TV.  I tell myself that that way I see the sights without the sightseers clogging up the view, by not having to endure a 24 hour flight to get there, by not having to pack a suitcase full of the wrong clothes (a talent of mine!), not having to get up early to queue up to see the Sistine Chapel, for example, but instead to see it via a camera which zooms in to give a perfect view close up.

How do I cope with not being able to go out for meals with friends?  We invite friends to our house after having them fill in a questionnaire about their health status....not really, we just check that they don't have a sore throat, cough or cold because then I'd have to wear a mask and trying to eat with a mask on is a skill I haven't yet mastered.

So far the question of weddings and other similar functions hasn't arisen although, sadly, I have missed some funerals of very dear friends and that is upsetting - not being able to pay my last respects feels terrible so I light a candle and have my own little ceremony, thinking of them.

Those are the social aspects of learning to live this new lifestyle.  The more personal emotional aspects cut a lot more deeply and, like any other event that causes grief, every so often I drown in the pain of the isolation and loneliness caused by being unable to, as mentioned earlier, jump in my car and head off to see someone I care about.  This is something that most of us take for granted.  In fact, there's a lot we take for granted, even if our health is indifferent but not life limiting.

I use Facebook and Messenger a lot to keep up my friendships and that works well, as I can chat to friends very easily via Messenger, look at photos they send me and even see videos of their family functions so that I feel that I'm there.  Even though they visit me whenever they can find the time, Messenger is a day to day option I can take and it works better than talking on the phone, which is tiring when my energy is limited.  With one of the main side effects of Palbociclib being fatigue, this is something I have to take into account constantly and I'm very fortunate to have so many friends who understand this.

I mentioned in one of my early blogs that friends deserted me when I became too unwell to go out.  Those days are long gone, along with those particular friends and I no longer miss those people who found it too difficult to take five minutes to call me, or thirty minutes to pop in for a visit.  These days I'm surrounded by friends; some are friends from long ago and some are new friends I've found through Facebook and I've discovered that Facebook friends can be sincere and fun, despite the fact that we communicate by writing.  I have even been fortunate enough to physically meet one Facebook friend who lives in another city and I expect to meet another in a few months' time.  These events provide something to look forward to.  Having said that, I would not be coping half as well as I am if not for my long term friends, who have stood by me all the way and have kept in touch constantly as well as visiting and helping us out.  When you have any chronic illness you need to swallow any pride you might have and reach out for help.  I've been no exception and my closest friends have never let me down.  I'd love to mention names but I'm keeping this blog anonymous as it is so personal but they will know who they are when they read this.

Then, of course, there's family.  Once again I'm very fortunate in having a long, stable marriage to a man who has loved me my whole adult life and in my son, who has given up so much because he chose to look after me.  We all need goals and my greatest goal, the wish to be independent again, is because I want him to have his life back again.  I only have a small extended family and they are more like friends than family, something I find comfort in having.  There have been friends who have flown from overseas to visit me! and another who has flown across the country.  These gestures make my life worth living and bring me joy as I re-live their visit again and again, along with the knowledge that they were prepared to do that for me!  Often I feel overwhelmed by the love I am receiving.

So far I've described the superficial aspects of living with an incurable disease, one which you're told will probably progress at some stage because the statistics say so.  Not many metastatic breast cancer patients survive.  This is borne out by statistics so how do I deal with that?  My next blog will delve into that important issue ~

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