KAT pallitive care are involved and with them comes a social worker and she has been a great support and helps where she can she is due to call tomorrow morning as colin asked her to check on me when he is in hospital with all he is going through im still his priority.. with most girls their father is their hero well i can safely say my husband is mine
KAT its lovely to hear that u still get support on here and we are helping you we are all in here for the same reason we will always be here to support you xx
Steph :-)
I understand what you mean about peoples responses you do have to choose your peoples and the ones who are helpful.I try to remember that mostly people struggle with the right words and mean well. I stopped going to town at one stage because of all the people...and now I get asked how I am...what to say there really..I use the stock standard ''as expected'' unless someone is really asking.
I just posted a great talk on my blog http://katandadls.blogspot.co.nz/. It is about God and faith and suffering,so it may not be your cup of tea..but I found them to so refreshing. The mum blogs and her daughter has SS. The whole family is talking and sharing. It is very honest and powerful. Not syrupy just real
Yes Gary was the same taking care of me. Pleased you have someone helpful ask what extra help is available and use it. Off for my shower now and to start my day..better make a plan or it will disappear..xxKAT
Its not that i dont believe exactly it like how can such horrific thing happen to good ppl when all the murderers, rapists and drug dealers get off scott free why doesnt god let it happen them and leave the good ones alone life just seems so unfair. I actually admire you Kat i can only imagine that u have bad days and find it hard at times to carry on but you seem to be getting there very slowly but surely. I am going to read your blog and see if it helps x
your starting your day and i am ending mine you have a god one and take care x
Oh Kat and Steph (right?)....So happy to know you both. I am relating to everything you are saying. Although I remain polite when people say..."Dan will be ok....because 'so and so' had Stage 4 cancer and he's fine now"...I want to scream!! It's apples and oranges when dealing with synovial sarcoma vs. other cancers. I know people mean well, but I get tired of explaining. I agree with Kat....try your best to open up and talk to whomever you feel comfortable with. I talk and talk and talk about it and STILL feel like I"m going to explode from stress. Dan asked me what I wanted to do for dinner tonight (as he's feeling better now that he's off the Votrient) and my response was...."a magnum of wine with a side of xanax please".
oh Jeanne that magum of wine made me laugh cause i went through a phase of drinking 2 bottles a night just to help me sleep needless to say it didnt work so i have gone off drink all together, i find talking to my mates about everyday stuff helps me better because talking about the ss, treatments doctors appointments, painkillers and everything else that comes with it is very stressful so my excape is hearing whats goin on in my friends lives it just brings that litle bit of normality thats needed, i think the thing is here ladies we loose our own identities when something like this comes in to our homes so i am grasping on to whatever shread of normality is left. I am even taking it as far as asking colins doctors can i book a cruise for our 1st wedding anniversary which is in 7 weeks sure why not we still gotta live right
urrghh I know they are such big questions and it seems so unfair. Stuff doesnt come around or happen like we want it ti and it is so hard to see the big picture at times..I have gotton angry but not bitter as it would only hurt me and anger is good..just needs to be sorted. Alot of angry people in the bible yelling at God and questioning. I only said..not your cup of tea as I dont want to evangelize or come across as wanting to influence. ts quite hard when it is who I am now though. I think there are all sorts of good ways to be and this is one of them. It has helped me enormously and I don't know how people manage without faith. Im not sure it made it easier but I know it would have been a lot harder without it. I only became Christian a few years back,. I was a tricky argumentative customer..and I swear like a banshee ( still do ) I think God likes those sorts. Face book me if you like it makes to easier to chat quickly too. KAT TAIAROA DUNEDIN NEW ZEALAND.
Im not usually a facebooker but am lately x have a good sleep...chamomile tea thats what peter rabbits mother gave him (it works too) :-)
thank you for all the advice kat will add you on facebook i am steph waters on it just so you know who the request is from x
haha just read the tow posts so true!!!! yes I felt my identity slipping away..made me grrr at times but then you come back..girlfriends are good and yes stuff that that is normal..Woodfords special reserve bourbon is my wee nightcap at the moment..I cant usually drink too much but happily at the moment a glass of something isnt bothering me and I m enjoying it..
Gosh you both make so many great points that help me. I've lost my identity! We have become synovial sarcoma!! I have to try to sort that out and work on it. And like you, Kat...I am not angry really. So many bad things happen to great people. Here in the States...we still reflect back on 9/11, or more recently the events in Boston. So much suffering all around, I do not feel persecuted. I will find you on Facebook!! I'm on there all the time too!! Sleep well ladies...I've got tons of paperwork to attack now for my job!
KAt i think thats you i just sent a request to on facebook... and Jeanne you look for some of ur identity and hold on to it because believe it or not it will help you, even if you just call to a friend once a week for a cuppa and a chat but 3 things i ban from conversation is colin the kids and for those select few that know about whats going on the SS i swear its like an hour with a therapist and you will feel just a little normal which i think is needed to help us get by it certainly doesnt do any harm. and i am glad you are enjoying your night cap kat we all need a little something x
Ok Steph...Kat and I are facebook friends already!! You should be able to find me as well: Jeanne Davis Kopetic!!
gottcha jeanne xx