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.
Izzy looks like you are having computer problems on top of everything else lol, sorry to hear that your husband is still not too well, at least he is at home with you and you can take careof him.
Lesley, hope you had a lovely night and your not too hungover!
Carrie,Emma,Joan,Karen,Carole hope you are all enjoying your weekend as much as possible.
Martin got me gorgeous flowers, I love them so much and a lovely card I shall treasure for ever.
Please ignore this if you wish, but I am having a very low moment.
It was so hard leaving B at the hospice today. I came home and hit the wine. Something I haven’t done for a long time, two glasses and I am not thinking straight. I then started listening to Stevie Wonder. Both of us were fans before we met, he partly brought us together, and in September 2008 I fulfilled and ambition by seeing him in concert, not just once but three times. The last time we saw him was at the end of September when B and I saw him n Paris. A place special to us as it’s the place we first went away to.
I now just can’t help thinking that either because of B’s disabilities or because of the unmentionable he and I will never see Stevie perform together again. I just find that so hard to bear.
Sorry.
Carrie x
Ps I know that in the scheme of things this may seem very trivial but at the moment to me it's not
I have just had my first valentines day without my John it has been a ***** great day, My father took me out to lunch and my daughter and son in law were here for the evening but it aint the same. Am so tired but can't seem to sleep. I miss him so and still cannot believe that it is real (6 months on) am trying really hard to carry on, putting on a brave face! but inside well words cannot describe it, I seem to be going through the motions of just living - my thoughts and prayers are with ALL who are and have been through this terrible, terrible disease - live life every day to the full, don't put anything off. thinking of you too Gayle.
The only thing I can do for you all is pray, miracles do happen as I have already mentioned before there are 2 who have got over this how and why I don't know - one has been going for 8 years the other for about 5 so hang in there.
I am stuck for words, I thought (not literally) that we were one of a few but having come onto this site - Words fail me, there are so many sad stories, so many questions - sometimes it is best not to know the answer.
Sorry, bad day today, next is 9th March, would have been our 35th Wedding anniversary gee am so looking forward to that.
Carole, it must be so hard for you 10 months without your beloved John, you must miss him so much thinking of you and praying your okay.
Carrie, I too have had a glass of wine or two or a little more, probably regret it tomorrow, songs they mean so much Martin and I our favourite song is how do I live by leanne rymes listen to the words it just somes up everthing, But I am still possitive and full of hope and think that it will be many many years that we listen our favourite songs together. Hopefully you will feel better tomorrow.
Izzy - hows things with your husband? Hope he's improving. Big hug to you. your computer madness with all those posts made me laugh, it was like groundhog day!
Carrie - sorry to hear about your day - no wonder you felt so down having to leave your husband in the hospice. Even though we all need hope and optimism, sometimes the reality of this awful disease is overwhelming and its hard to stay positive all the time - hopefully it comes back.
Carole - Sorry to hear about your husband - six months is no time at all, glad to hear you have your daughter nearby for support. Its six months since my dad's diagnosis and sometimes it still feels so surreal -l although I know its unfortunately all to real. take care.
Gayle - Hope you had a nice night last night. My dad's at the dietician and diabetic clinic at the hospital this week. Next week is his first scan since the end of RT ...do you know if you get the results that day or if you have to wait a couple of days. Im really scared already.
Unfortunately no results on the day, the first scan we had to wait 2 weeks the next one was only a few days, but it felt like a year, maybe your hospital will be different to the beatson. I know how you are feeling scans are very scarey they make ill leading up to them and then waiting for the results sorry dont mean to freak you anymore than you already are. Thats good about the dietician, we never got anything like that we were given a few leaflets thats it. My turn for the hangover today I drank 2 whole bottles of wine last night we never learn do we.
Thanks Gayle, I thought I'd read people having to wait a couple of weeks, my mum thought it would be the same day but I didnt think so. He's not been that great over the past few days so I dont know what the news will be - oh well, have 10 days of reprieve so I'll have to try and block it out. This is the first time he's seen a dietician since he was diagnosed with the diabetes which is a couple of months ago now, might give us some useful tips? As long as you enjoyed the vino last night who cares?....no, we never learn and most probably never will. Early night for me tonight.
Heather, Carole, Gayle and Lesley, thank you for your kind words. I still found it hard leaving B today. But I don’t feel anywhere near as fed up as I did yesterday. I manage to stay positive and optimistic most of the time and know that everyone is different and good things happen but sometimes it just hits me. Especially as, at the moment, B’s mobility is very poor. At the hospice they are having to move him by a hoist. He is also very confused and forgetful. His father had dementia and one of the things that B is scared of is losing his mental capacity.
I’m off to the hairdressers tomorrow morning, my grey roots are really showing and my hair needs tidying up and after that I have to get a new tyre put on the car, it has a slow puncture because it has a nail stuck in it.
Heather – I read your profile and you have been through such a lot, first with Jeff and now with TJ. I know how I felt when my dad died 11 years ago and I can’t imagine how it must be to lose your husband or wife. People are very sympathetic at first and although as time goes by they don’t forget I sometimes think that they don’t realise how much you can feel a loss weeks, months and years afterwards as there are always reminders.
Carole – I echo the words I wrote to Heather. I know what you say about making the most of time. The funny thing for us is that during 2008 we made a point of doing a lot of things we had always meant to do and that has helped me an awful lot since B’s diagnosis. I will be thinking of you on 9th March.
Gayle – song words mean so much to us too. Just the title of the Leanne Rymes song is enough to bring a tear to my eye. Hope you weren’t suffering too much after drinking the wine last night. My head was ok this morning. Hope Martin and Martine are ok and that you are starting to feel a little better.
Lesley – I’ve just read your profile and your dad’s situation is so like B’s. B has his scan following RT on 3rd March. I think we are lucky in that he has the scan at 12.00 and we see his oncologist and neurosurgeon at 1.30 on the same day. I’m not sure why we are still seeing the neurosurgeon though as I was under the impression that B’s tumour is inoperable. Keeping my fingers crossed that the news from your dad’s scan is positive.
Hope everyone is ok. I’m a little concerned as we haven’t heard much from Karen or Izzy (apart form the messages being sent four times each). Thinking of you both and everyone else I haven’t mentioned.
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
