My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Long time no speak again - Just popped on to say hello to old and new!
Becca - nice to hear you managed some quality time away....can only imagine the void....i wonder if that's something that'll every truly leave though - probably not. I read your dad's notice - brought a lump to my throat - he was obviously so well loved by everyone who knew him. You must be so proud. Been back to work 5 weeks now, i must admit i really enjoy going in...3 days a week is perfect and it gives me time to focus on other things and escape a bit. Going back to work will hopefully give your mum structure as you say....unfortunatley normality as we knew it in pre-BT life will be completley different in the lotsa love to you all. x
Lorraine - Hope you enjoyed your time off. It must be so difficult for you right now but your doing fab - still have to get myself a new moby so will be in touch when i do! x
Gayle - are you still teetotal (ha ha!) Hope Martin is still doing well and isnt so tired, your all still enjoying the caravan...wont be long till you can all spend all the summer there eh speak soon x
Emma - your one amazing woman, what a trouper - can understand why its time to retreat - thanks for being there for everyone all these months, love to you and the girls. x
Dianne - hope your daughter is better today - let us know if something about BT's is going to be filmed on tv...we'll all be with you watching. One of my best friends ran the London marathon a few weeks back and we've gave the money to the Samantha Dickson Trust...a very worthwhile cause. x
Michael - forgive me, but is it your dad who has the clot in his leg? I cant scroll back or i'll lose this post as i so often do! If so, my dad had a huge clot in his leg back in Feb...it actually travelled to his lung...we still have the district nurses coming in twice a day to give enoxyparin the blood thinning drug, its injected into his stomach. Hope your dad's isnt as severe and is doing better.
"Welcome" to the other new poster too...im not normally this ignorant..honest!! This site has been a lifeline to me and I hope it can help you in some small way too - sometimes just knowing your not alone can help hugely.
Love to Carrie, , Laura, Julie, Joan, Greentree, Eileen..everyone reading. x
Well its still a funny old life here (not in the ha ha sense obviously), still trundling along as best we can. Have managed to get my dad to stay a couple of nights so that was fantastic, although even trying to sit up wipes him out and its painful to watch him even trying to follow a conversation - seen the consultants today, he's to go back in 3 months unless anything major happens between then (as it always does) - he's still on 8mgs dex and we've to lower it to 6mgs....this is when the problems start unfortunatley. No mention of any chemo but that's no surprise, there's no way he would be able to withstand it in the slightest.
Anyway, time to go to bed, i really must try and get on here more often again...im losing whats going on and forgetting peoples names..not good! much love xxx
Hello everyone. Just saying 'hi' from my Dad's house. It's great to be here and to see him again. Much better than being at the other side of the world trying to help on the other end of the phone each day. It's hard to see him like this. He spends all day in bed. Mostly exhaustion but I feel also because he can't face it and almost like he's giving up. I don't know maybe not, maybe just really scared and wants it all to go away. Not sure how to help with that. If only I could make it all go away. We have the scan results on Monday so that will give us a better idea of what's happening I hope.
Jennifer just wanted to say I can totally relate to your post. My Dad was diagnosed about 6 months ago but sounds very similar to your dad in the staying in bed and not doing anything. I also wish he would 'fight' more but don't know what to do about that. I hope you find support on here.
Lorraine thinking of you and your family.
Gayle hope Martin ok.
Emma thanks for posting that message. I too can udnerstand that it must be time to do other things, it makes sense. You have been so amazing on here - thank you.
Hi here goes another day going to try not get stressed today!! Poor kids must think their mum has turned into a looney (I have two girls one is 4yrs and the other 1yr both next week). Would like their Nan and Grandad to join in the little party but honestly know that it is not possible feel bad for them.
Dad no better, seems to have regressed bit childlike in a way I suppose, he is unsure about simple things for example when cleaning his teeth he doesn't know how to do it whether to spit the toothpaste out or what, also when eating is ok if using hands for sandwich etc but when it comes to a knife and fork he gives up or doesn't even try. Seems bizarre to me anyone esle come across anything like this?? Other than that he just sleeping but seems to perk up a bit when the nurses or someone else goes in, wish he would for mum but I suppose she is there 24/7.
Glad found this site, nice to know others are in the same boat....
Jennifer, your situation sounds a wee bit similar to mine - my dad was diagnosed last August when he was 59 (was 60 in April). His tumor was inoperable - he was given 30 radiotherapy sessions but never any chemo as they didnt think he was up to. 10 months down the line he is, unfortunatley, deteriorating, but he is still here and able (just) to walk so I am grateful. My dad's is situated in the left parietal lobe so anything to do with speech, spatial awareness etc is affected. He know doesnt know how to work the remote control and wouldnt have a clue how to switch on the kettle. Its so distressing seeing a man who was so strong and active reduced to this state - horrific is the word i use for this disease. It was really just to say to you that your definatley not alone. I have two kids to, my girl is four and my boy is one on 26th June...I must admit, they have been saviours in all of this, they are so innocent and full of fun that it does help us all. Being stresseed is all I seem to do nowadays!
Lorraine - Thinking of you just now pal, your going through an extremely tough time - hope your mum is still managing to give you a wee smile. look after yourself.
We do seem very much in the same boat, same age dad's near enough same diagnosis date, same age kids, how bizarre!!! Dad's is on the right parietal lobe, which I've just looked up on the net, seems damage there can cause impairment to self care skills like washing etc so that ties in also says about personality change which he also has.
I have a horrible feeling that the beast has won and has grown again and I also have a feeling they are going to cancel his scan next wednesday.....god I hate this.....
Just a quick post to let you all know I am thinking of you, Lorraine, Lesley nice to hear from you guys thinking about you both and your lovely families at this difficult time, to everyone else old and new big hugs.
Things not great here, Martin finally off the dex, alotgether now no headaches thankfully, but its about the only part of his body that doesnt hurt, his knees are really sore it hurts him so much to walk around, he is very sleepy and doesnt eat very much, he has lost 3 stone over the last 2 weeks and he now does look ill, very scarey for me to see. Now he openingly speaks of death and tells me he cant stand the pair its so intense, he has told me his final wishes re his funeral, he has even told me he now feels like taking his own life, its so hurtful to see and hear this, I thnink it has finally sunk into my head that I am going to loose him and god I am just not ready, I am hoping and praying that these are all just side effets of coming off the dex and not anything else, this is such an evil disease, love to you all.
Hi Gayle - your post has really struck a chord with me. You are normally so positive and Martin always sounds like he's doing so well, so this must be horrible to see him like this. Let's hope that it is a blip as his body gets used to no dex. But, horrible, as your conversations with him have been, you will look back and be glad that you have had them. Remember, we are the lucky ones who have time to prepare and make sure that we do everything and say everything that we want to (this is said sort-of tongue in cheek, but I hope you also understand whatI mean). It doesn't make it any more pleasant though does it?? Big hugs to you xxxxx
Aw Gayle, sorry to hear Martin is feeling so low just now - on one hand its brilliant that he's managed to get completley of the dex, but on the other, maybe this is what's making him so tired? Its not like him is it....normally he's the life and soul of the party...as Sally says, hopefully this is just a wee blip, possibly his body getting used to the reduction?? It must be soul destroying to hear him talk like that though, Im sure he wont mean it and is obviously just the effects of not having a good few weeks. My mum told me my dad was crying on Tuesday...she's been with him 34 years and has never ever seen him cry...the tears were just rolling down his face....nightmare all round just now...hopefully they both pick up for the weekend and Martin is back enjoying himself at the caravan.
Hello Gayle, I just had to pop in because your post was so shocking. Dex seems to make such huge differences to everyone. Keep the faith. This is the man who sings karioke at the weekend. Don't discard the possibility of Martin having an infection - I know you will have considered that. It must be so hard for you at the moment. Keep strong. Love, CHxx
sorry to read you're struggling a bit and just want to echo what the other friends say - reckon the dex has a lot to answer for - it's SO hard to get off it - real cold turkey - They say withdrawal leads to depression and dark moods and this sounds so unlike Martyn , especially considering how great he's been doing - think these black thoughts are beyond his control and they will even out as his adrenal system gets working again - 12 months of dependency on a drug can do funny things to the brain - especially when the poor brain has had so much going on, and the adrenal system which is in charge of so much, apparently goes to sleep when the body's flooded with synthetic steroids - It takes a while to get going again - As CH says - 'keep the faith' - Martyn will be back on form again soon - Get him to take plenty of sunshine - Vitamin D!!!
