Sunday, 1 November 2015

time for some lifestyle changes...

Those of you who have followed this blog for a while will no doubt remember our friend and fellow meso warrior Tess Gully, whose own blog "Targets" was an inspiration for many until her untimely death in August 2014. 

Steve does not have a "bucket list" and, unlike Tess, has not been in the habit of setting targets. However, he is a great fan of rugby union and over the course of the last year or so has his cancer has continued to progress, he has wondered whether he would still be around to see the final of the rugby world cup.  Well, that "target" was achieved yesterday, in the company of our good friend Ian and a number of bottles of beer in front of the TV.  Not the final they had been hoping for, but good fun nevertheless!

Sadly, Steve didn't feel well enough to come into town on Friday night to join in the fun as friends and former colleagues said (another) goodbye to Murray who has after many years left the City Council, where I used to work a millennium ago.  Steve has been out of the house, but only as far as the car to drive to places too far or difficult to reach on foot or by bus. Once we have arrived, he has preferred to stay put in the vehicle rather than accompany me on errands.  

I think this is a sign of the times and shape of things to come. Until and unless he decides he is ready for a wheelchair or mobility scooter, Steve's physical horizons will be limited to the house and garden, the street outside and views through the car window.  And social life will probably be home-based. You will have to come to us, rather than us come to you....So if you are down this way, please do drop in if you are passing, or give us a call to arrange for a longer meet up over tea, coffee, drinks or a meal if Steve feels up to it.  

Although he is eating well most of the time, Steve's weight is reducing inexorably.  He's now down to 52 kilos (just under 8 stone 2 lbs) in shorts and a T shirt - a loss of 1.6 kilo/3.5 lbs in the last ten days.  In truth, that's rather scary...We can't blame it on the side effects of a drug trial like we could this time last year.  The word cachexia rears its ugly head again...

Yesterday, returning home after a trip to the garden centre, we bumped into Mark, an old friend and former neighbour in the street - always a pleasure to see!  The conversation started with the normal pleasantries including the usual question, how are you? 

Steve started to say "I'm fine.." but then stopped himself and admitted that actually, he's not feeling too great at the moment.  How do you respond to that, knowing that the cause of the problem is without a cure, and that hoping someone will get well soon is therefore not really an appropriate response in the circumstances? 

Well, there are no words. At least, no easy words. We know you don't want Steve to die or to be in pain. Take that as read. There's no need for a deep philosophical response, even if you can think of one off the top of your head. Swearing is permitted as a way of expressing your feelings and emotions. Black humour is keeping us going too!    

The bottom line is mesothelioma is a bugger and it's not going to go away.  If you really want to know how Steve is you will have to face our demons with us.  Its difficult, but it's just about do-able...believe me.  The fact is, life goes on until the last breath is drawn - and we both feel that Steve is still some way off that (although he's just told me that he's decided against investing in a new pair of jeans....see what I mean about black humour?)  

For now, we need to find ways of managing the changes imposed by the disease so we can make the most of life in the best ways possible. So bring us a bit of sunshine, smiles and laughter, funny stories, your news, maybe a bunch of flowers, and most importantly, your good company...either in person, or via letters, emails and phone calls (but please don't be offended if you happen to call at a bad time and we can't talk right then, or you don't get a response to your email).

I didn't start out intending to write stuff like this today, but it's like someone pressed a button and it flooded out.  Writing the blog helped me articulate and face the fears and emotions when Steve was first diagnosed back in 2009, and I have the feeling that it will be doing that again in the foreseeable future. 

In the meantime, life goes on....Steve wants his hair cut; there are winter flowering pansies and violas waiting to be planted out on top of the pots of crocuses, daffodils and tulips ready for next spring; a meal to prepare and an opportunity to enjoy the blue sky, sunshine and autumnal colours.

Love to you all x 

No comments:

Post a Comment