Positives and negatives

Hi Becky

it's so true what you say about this illness being so damaging to all who get caught up in it --I think I know exactly what you feel. Everything changes and it's hard to imagine life how it was before the diagnosis. I used to ring my Mum 2 or 3 times a week and see her and my dad every 3 months or so, usually they would come down to Kent to stay for a week or so. Now I ring once or twice a day and go up to wales to visit alternate weeks! It's affected all our lives--I feel shattered juggling work, home life and family, my husband fends for himself a lot of the time and my Dad is looking very tired having taken over most of the things my Mum used to do around the place.

We really need a holiday but don't feel i can plan ahead at the moment--maybe a weekend away might help.

On wed we have an important oncology appt - CT scan results and possibly start sutent. i'm so mixed up about it all-I'd like her to have a chance to try some treatment but fear she will take a step backwards. She's quite stable at the moment, her megace has been doubled and her appetite is relatively good which obviously helps and her weight is stable, possibly slightly up. But for how long? What's around the corner? What is the scan going to show? It's easy when I talk on the phone to pretend everything is ok, but then reality hits me each time I see her, having not seen her for a couple of weeks. Sometimes I just can't bear it!

So Becky, please keep posting,.All of us watching someone we really love fighting this awful disease  empathise with you and fully understand all the ups and downs and mutitude of feelings that go along with it!

Keep strong

Sue x

Hi Sue thanks so much for your reply, it does help so much to know that there are people who do understand how life has changed and this strange world that we now live in.  I hope the appointment goes well and you get the result that you want, though I do understand this can be quite conflicting.  When your mum seems stable it is worrying if she has the tablets but could they help?  I really empathise with you.  When dad was on the tablets he was so much more poorly but now he is not having any treatment and that is worrying too - you just cannot win can you?

Much like yourself planning has gone out the window as nothing is certain anymore.  I know how hard it is juggling everything and trying to keep things slightly normal.  I am lucky that they live local but you must be shattered with the travelling added into the mix.  

Like you I feel that I am on a roller coaster that has no control.  How long will dad stay as he is, will he have to go on the tablets again - will they even let him?  How long have we got?  My friends tell me I should get on with it and enjoy the time I have and that their parents are in the same situation as they are all getting older.  What they don't understand is that we know he is ill (terminal - horrible word) and that changes everything.  The constant cycle of hospital appointments, tablets, side effects and so on and so on.  I find myself wondering if it is me being mean and selfish and I should just bounce back and stop being miserable, forget what is going on and get on with it?  But you understand how hard that is don't you?  This is my dad and I love him and I cannot imagine life without him, I want life to be normal for him again - all these worries to go away so he ca enjoy the life he worked so hard for.  On top of which he has changed so much throughout this journey as has our realtionship.  I have become the parent and not the child anymore.  My dad seems very grumpy, argumentative and angry at the moment which I put down to a new year and lots of uncertainty.  He is lashing out at me and my mum and sometimes though I know I should not I argue back and I hate myself for it.  I feel for mum too as she is tryng to deal with his anger, protect him and care for him whilst not being in the best of health herself.  Much like your dad it is hard for them too. Like you say there are a multitude of feelings and some are good but there are a lot of bad and scary ones.  Sorry to rant but sometimes this is the only place I feel I can and where I know there are people that understand this strange journey and no one will judge me for having a wobble - which I do often to be honest.  Does that sound pathetic?

I will be thinking of you, really hope the appointment goes well and the consultant gives the right outcome.  You take care.  Thanks so much for your understanding and support Becky xx