Bobbie Dazzler (not feeling so dazzling at the mo though)

Chores, Choice and Demands

2010-11-15T11:36:17Z

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

Anyone for Lemonade?

2010-11-09T22:29:24Z

When life throws you lemons you make lemonade.... it's a crap saying but it's true. We are all on our own journey through life, when life throws a spanner in the works, be that cancer, a broken central heating system or a broken down car we just deal with it, I have had all three (and more) problems to deal with recently and still am dealing with them.

Friends have said they don't know how we manage to stay positive, they say they wouldn't be able to cope if put in to this situation, I would have thought the same but we manage it. I'm not a superhero, I didn't have special training to deal with this and I am probably not anyones idea of a nurse or carer. The only thing I do have is love, and lots of it. for my family, my friends and most of all for my partner, I dont have all the answers but because i care I will find them, i am prepared to learn from my mistakes and an happy to be taught how to deal with this as I love those around me, particularly Steve, enough to allow that help and support in, to accept my failings and change what, when, why and how i do things inorder to make sure I can give the best of everything to my soulmate.

I'm probably rambling a little now but after a few failed relationships i recall a friend saying after you have been hurt you never manage to give 100% of your heart to anyone again as it hurts too much if it turns sour. I used to think this was nonsense until I met Steve, we spoke and he understood this too and we concluded because we had both been hurt before we would never be able to give 100% of our hearts to anyone ever again, maybe 95% or 99% but there would always be that little bit of love left in reserve for ourselves, a comfort cushion if you like, just in case. Even though our hearts wanted to live happily ever after our heads reminded us in reality nobody can foresee the future and people change.

We've changed over the years but, we have grown together and we're probably more together now than ever before. I realised this the day Steve was admitted to hospital, this was our first night apart since we bacame a couple, almost six years without a day or night apart and then it was a brain tumor, (which we now know is a GBM) that forced us to spend our first night apart. We're determined to not let this tumor come between us but it has managed to disrupt our routine however, this has made me realise that I've changed, the small % of my heart i was keeping for myself has gone, it all belongs to Steve.

I used to wonder what people meant when they said "soulmate" I know the answer to that now too, being just one half of the whole, feeling like your arm is missing when the other is not there, knowing what they are thinking before they say it, feeling their happiness, their excitement, their fear and pain without the necessity to use words, when a simple glance speaks volumes and when the chemistry is so strong that even strangers are aware of the bond.

I don't know the point I am making, I am just wittering on but as I said, even though life deals us some bitter blows we deal with them, not because we have special skills or abilities but because we know how to love, it's the love that keeps us going, helps us stay strong and helps us make lemonade when we're given a whole heap of lemons......

An intro?

2010-11-08T23:31:21Z

Well, I've ended up here from following a link on You Tube, it's funny how when surfing the net at this time you end up looking at all sorts but, since my partner has been diagnosed these late night surf sessions have tended to have just one theme.

I guess today I feel a little low, I feel guilty for it too, I do whatever is necessary to make Steve as happy as possible and hide my sadness by busying myself out of sight but he went to bed at 9 tonight so a few hours alone, some thought provoking music and... well I guess we all get them.

I guess I am hoping that blogging will help me get my thoughts "in the open" I don't think I am looking for answers or reasons, in truth I don't know why or what I am writing, maybe today wasn't a good day to start but I have, I wont promise to blog daily and maybe not even regularly but I will try.

Steve, my partner has been keeping a blog on our old website, www.troubleonline.co.uk since he was diagnosed with a Glioblastoma Multiforme on 29th September this year, he's now in to his 3rd week of Radio and Chemo therapy, he doesn't seem to being too bad, it's almost business as usual really, do take a look at his blog though, his first blog after being doagnosed was around 1st October and he's been updating it almost daily since then,, I don't promise to do the same though.

Well thats enough of my warbling for one night, hope to be back soon.

Mark x