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.
Arrrrrr I am so tired and frustrated hubby back in the hospital he is really not too good he was crying today when the ambulance begging for me to tell them to go away he really did not want to go I feel so sad and hurt I miss him so much seeing him so upset really hurt me I am so distressed with all this I have cried all day and night I could really go a whisky but cant incase I have to drive later I really want him home with me why is this happening to all of us????
Carrie thanks for your oncern looks like your going through much the same as me how do you cope I am finding it really hard sometimes I think hubby and me should swallow all his medication we too have a scan coming up in march thats another worry
Gayle glad you had a nice day yesterday we spent the whole day in bed together as hubby was so ill
Lesley scan I am so dreading it too
Joan Karen Diane Emma and CH thinking of you all I am of to bed thinking about my dear hubby
Arrrrrr I am so tired and frustrated hubby back in the hospital he is really not too good he was crying today when the ambulance begging for me to tell them to go away he really did not want to go I feel so sad and hurt I miss him so much seeing him so upset really hurt me I am so distressed with all this I have cried all day and night I could really go a whisky but cant incase I have to drive later I really want him home with me why is this happening to all of us????
Carrie thanks for your oncern looks like your going through much the same as me how do you cope I am finding it really hard sometimes I think hubby and me should swallow all his medication we too have a scan coming up in march thats another worry
Gayle glad you had a nice day yesterday we spent the whole day in bed together as hubby was so ill
Lesley scan I am so dreading it too
Joan Karen Diane Emma and CH thinking of you all I am of to bed thinking about my dear hubby
Arrrrrr I am so tired and frustrated hubby back in the hospital he is really not too good he was crying today when the ambulance begging for me to tell them to go away he really did not want to go I feel so sad and hurt I miss him so much seeing him so upset really hurt me I am so distressed with all this I have cried all day and night I could really go a whisky but cant incase I have to drive later I really want him home with me why is this happening to all of us????
Carrie thanks for your oncern looks like your going through much the same as me how do you cope I am finding it really hard sometimes I think hubby and me should swallow all his medication we too have a scan coming up in march thats another worry
Gayle glad you had a nice day yesterday we spent the whole day in bed together as hubby was so ill
Lesley scan I am so dreading it too
Joan Karen Diane Emma and CH thinking of you all I am of to bed thinking about my dear hubby
God, this is so awful - I still think I am going to wake up, it is just so unreal.
Anyway, enough of that valentine's day was hard (another first) used to get a red rose! Thinking of you and your car carrie, I did not realise how much my John used to do if you know what I mean. Silly things like car and house insurance, mot etc. I had to start doing it all because he was getting confused and could not really concentrate.
Izzy, I found that if my husband had any hangups this illness would make them 50 times worse. I actually stayed with him in the hospital whenever he was admitted because he would get so anxious and distressed. It was okay for me, I had already given up work and had no young children (unless you include 2 jack russells in that category!) I slept in a chair in his room and I did everything for him.
It obviously took its toll on me, people who have not seen me for a while say I look a lot better! Gee I still don't sleep very well and have bags etc. under my eyes goodness could I have looked worse than I do now!
Love to you all
There are no words that I can say in this situation except I am thinking and praying for all of you.
Izzy, so sorry to hear about your husband it must be really difficult for you and your husband too, Martin has a real fear of being taken into hospital, he doesnt like me calling the gp for anything incase they take him to hospital, hopefully things will get better for you both soon, thinking about you both.
Carole,I can feel your pain in your posts ((((((((big hugs))))))) to you.
Hope everyone else is well, all fairly good here, Martin had his reflexology an hour ago, he is away for a half hour kip now, Martine off school for the week, we got her the new hsm dvd today she is over the moon.
Gayle - Glad Martin enjoyed his reflexology. B had an aromatherapy back and neck and then foot massage which was organised through the hospice a few weeks ago. He enjoyed those too.
Carole - Once this thing starts it's like you're on a rollercoaster which you just can't stop. Trying to sleep is one of the worst things for me. I really used to enjoy going to bed, snuggling up to B. Now i am lucky if i get five hours sleep a night. I manage to go to sleep by reading, but then I wake up in the early hours and can't get back to sleep. I don't really want to take sleeping pills, but B was prescribed some and he hasn't taken all of them and I'm really tempted to give one a go. I'm just frightened that if I do I might need to do that all of the time. I should be used to doing things like sorting the car etc because my first husband left me 10 years ago and I was on my own for 15 months before I met B. This time around thought taking charge seems so much harder, especially as he desperately wants to help me.
Izzy - I've sent you a personal message, hope you don't mind.
I hope you dont mind me joining your group. Stephen my partner was diagnosed with GBM on 11 Dec 2008 he is 41 years old, we are petrified of what the future holds for us, it his very frightening, we were told he had approx 14 months to live.
He is currently undergoing chemo and radiotherapy which is taking its toll, also he has awfull seizures in his right arm which again are really frightening for him.
Gayle I know what you are going through and my heart gors out to you, how is your husband at the moment I hope he is doing ok and coping with his treatment.
Carrie re sleeping tablets, I take them most nights its probably not the best thing to do but its the only way I get sleep, but I still wake up if Martin moves out the bed or calls on me for anything taking them a few nights would not do you any harm until you get into a better sleeping pattern you need your sleep to stay strong for B. Glad B enjoyed his massage, it is really good for them.
Julie, sorry that you find yourself here, this disease is so bloody awful everyweek some poor person is being diagnosed, you will find lots of support and friendship here, people who are going through the same as you and will understand fully how you are feeling, where do you live? Hope you and your partner are coping,it is such a shock at the beginning, you will get the strength to get through all this you will have bad days but also good days too, try not to focus on the time scale they are only averages each indivual can be so different there is a lady at our clinic who was diagnosed over 8 years ago, so keep the hope alive you never know what is around the corner, also there is new drugs being trialled all the time.
Well everyone I joined the gym, through a stress management programme, I really enjoyed it, it was fun probably be sore tomorrow lol, am going to twice a week, I have put so much weight on since being off work. Martin still doing very well it is great too see, hope you are all ok, special thoughts to Izzy hope your husband is better and Carrie too you much miss them so much.
Hello Gayle,, thank you so much for replying. We live in Blackburn in Lancashire not far from Manchester. Am I right in saying you live in scotland? Thank you for your support it has made me feel a little better and it is excellent news that somebody you know is beating this really really awful illness.
We are at the moment talking to Dukes University in America they are very specialised in GBM and have told us they can really help Stephen but we cant do anyhing just yet we have to wait till hes finished his treatment and wait for the scan results.
It is nice you have joined the gym thats what I should be doing but just dont have the time at the moment and I really need to go to put a bit of weight on I am only 7 stone wet through, I find when I go I normally put about half a stone on but its only muscle as soon as I stop it rolls back off again.
Anyway must go now hope we will speak soon and take care Julie xxxxxxxxxxxxx
