It's been a few days since I posted, I am not sure if thats a good or bad thing really, I find visiting this site can be difficult on times, not because I don't want to give or receive support etc but sometimes it's nice to not dwell on the Cancer.
The past few days have been OK, in fact better than OK they have been good days. I would never have thought 6 weeks ago when Steve was diagnosed with a GBM and given 12 to 18 months to live that I would ever have a good day again but I have. This is in the main because Steve is refusing to let this disease get to him, yes it's there in his brain and it's never far from the forefront of our minds but he is not giving in to the fatigue, to the aches or to the negativity that could so easily drag him down that slippery slope. He is staying positive and upbeat so I am too.
In saying that it doesn't mean I am not aware of the many personal stories I have read about others with this sort of Cancer who don't make it past six months after diagnosis, I'm choosing though to stand by Steves side as he promises to contradict the doctors and become a success story.
How can we define success though? There is no cure. Whilst we have found rare stories of people who have survived this by 10 or 20 years they are few and far between, is success 10 years or is it 20 years? For me I guess every day is a success, every day I wake Steve up with a hug and a kiss and motivate him to haul his ass, (all be it a cute one) out of bed.
I feel a little like a tyrant sometimes, making him get up, giving him a list of little jobs to do like posting a birthday card or making a phonecall maybe even loading the dishwasher but, these are normal things and Steve wants to be treated normally. He has mini goals for the day and when he has done his little jobs, (or those he remembered at least) then he has a sense of achievement. He assures me he likes this and appreciates it, he doesn't want to be wrapped in cotton wool, he could load the dishwasher before he got cancer and nothing has changed, he may do it more slowly now or may need to write himself a reminder but he can still do it.
I think we all have a natural urge to "care" for someone who is ill by allowing them to rest and focus on getting better but we lose sight of the fact that part of our health is mental health. For someone who is used to playing a part in a family and having responsibilities and a "part to play" in the usual day to day running of a home is is not good to take all that away from them, those routine tasks that are familiar and comfortable. If those are removed then all that is left is a new and unfamiliar routine of medication, rest, treatment, hospital, doctors etc, I am sure it could feel lonely and scary so those routine jobs become more important and valuable because they are a link to the normality you once knew.
Choice is another area which can cause tension. Steve had a "wobble" this weekend where he got frustrated that people have decided for him what he can and can't do, what he would and wouldn't like etc. Of course, being the closest then I bear the brunt of this because I told him at 6pm on a Saturday that after spending the majority of the day working on his shopping empire that I felt he had done enough for one day. He knew I was right and that I would have said this to him many times before in the months and years before he was diagnosed but, because he is now having other choices removed then he's more sensitive to "common sense" suggestions. His (and my) choices over if and when he can go on holiday have been removed, choice of whether to go out on a saturday night and party until 3am or choice of when to eat lunch, to some extent, has been hindered by the new regime that is cancer and it's treatment.
We never appreciate how important choice is until we don't have it. I guess this is part of the reasoning behind getting a wig, (which he's now worn a few times) now his hair has, in the main, gone then his choice of how to wear his hair was removed but, by having a wig he now has a choice, to go out with "hair" without hair with a hat or without a hat. I suppose it's a small tade off but even things which appear as a choice are not really, you know the type, when someone asks, "does my bum look big in this?" yes, you can fib and say no or you can hurt their feelings and say yes, in reality most of us will say no and forego what we really want to say just to make someone else happy and not cause any upset.
This is perhaps where Steve and I feel most uneasy or awkward. At the mo we have alot of demands placed on our time, hospital, family, friends, home, work, each other and probably in that order too. The time for us seems to come further down the list as we try to fit in everything else, we don't complain as we appreciate all the help and support we get.
We realised this last night, I asked Steve what he would really like to do for New Years Eve this year, we have sorted Christmas (more or less) and everyone makes a fuss over new year, we never have as it's just a change of date. Steve said he would really like to work on new years eve, we were booked up for NYE early this year but after the diagnosis we had to cancel. He said, (as a second choice - how flattering! - note the hint of sarcasm) that because we cant work he'd like to be snuggled up in a cottage in the middle of nowhere in front of a log fire just the two of us. I'd love it, very romantic and cosy but, I think it goes without saying that we wont do that, we don't know yet what we will do, I will leave it to Steve to decide though as again it's just a chance for him to choose, it may be the third choice but still, I'm happy for him to take the lead on that.
So, all in all you can see it's a bit of a "muddled" time for us at the moment, not a lot of anything in particular but, understanding these issues, talking, listening and appreciating what we DO have is making for a few good days, not extra special days, or eventful days but good days where we can take comfort in the familiar stuff and make the most of the new stuff so we can smile and stand tall, stand proud and face the future and all it will bring, at each others sides. x
