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.
Hi Lorraine, Thinking of you lots. Can you just ask for compassionate leave or something from work, or just unpaid leave so that you can return to work when you can? But you are right to spend this time with your mum - nobody ever says "oh, I wish I'd spent more time at work!!"
Lorraine, ((((((bighugs)))))) to you and your mum, dad and Scott here for you anytime you fancy a wee chat, you are all in my prayers, I whole heartedly agree with the other girls re your work spend as much time as you can with your mum, as you know I have been off work for over a year now with Martin and dont regret a single hour of it and have no intentions in going back until Martin no longer needs me. xxxx
Well we have had a mixed weekend, T Total for me apart from a couple of glasses of cheap bubbly in our limo ride, which Martin enjoyed very much as did Martine and her best friend. Monday morning I feel so bloody tired as tho I have had weekend of wine LOL. Well on saturday night we ended up at hospital with Martin, his leg was swollen and had a large mark that was burning, fortunetly for us it was an infection, anti-bilotics are starting to work aleady thankfully. As for the docs this morning Martin acted as tho he was fine nothing wrong with him and that he wasnt paranoid or anything grrrrr, all the other syptoms that Martin is having are typical of coming of the dex, even the not eating, yesterday his whole days eating consisted of half a bowl of rice crispies, a tangerine and an apple, our gp has given us some tabs to try and help this fingers crossed.
Lesley, Christie, Susan, Diane, Dianne, Emma,Jay, Carrie , Julieand everyone else love to you all and your families.
Lorraine you sound like you have done the right thing. Thinking of you at such a difficult time.
Gayle I hope Martin's paranoia goes away and his appetite starts to pick uo soon. Must be a worry. Also hard that he is different at the docs so they can't see your worries. If things don't improve I would talk to someone form oncology rather than the gp - maybe a macmillan nurse or someone?? Hope you're getting some rest yourself xx
Jennifer thinking of you for the scan
Well today was results day for us. My Dad's first scan since treatment started and thank goodness it's good news. Such a huge relief. The atmosphere in his house feels different and he is obviously much more relaxed. He is just starting his 3rd round of temodal now. The consultant said there is a tiny area on the scan with some uptake of the dye but overall it looks really good. Hopefully this will give him more motivation to get up and do things even though he is tired. He is now down to 0.5mg dex and can stop in 2 weeks.
Fantastic news, so happy for you and your dad, the good news will give him a boost and make him see that there is plenty to get up for, bet he is so happy that you are here too, congratulations.
I wrote a long post in WTBT yesterday about our lovely holiday in beautiful Scotland so I won't say it all again but just thought I'd pop in and say hello. Lorraine, thinking of you at this difficult time. I think you are absolutely right to stop work to spend time with your dear Mum. She will take much comfort from having you close to her.
Gayle, hope Martin is getting used to being off the Dex. Paul still feels very tired most of the time even though he has been off the Dex for 2 months. I think it's something that we have become used to and we just have to accept the changes that BT has made to our lives. The lovely week in Scotland proved, as if we didn't already know, that BT be damned, we can still enjoy special times together.
Lorraine - your mum has put up one hell of a fight over the last 2 years and its just so so sad its now coming to this. Sounds like youve totally made the right decision - this time is so important to be with your mum and dad now. I take it you'll get sick leave and have the choice to go back one day. Im totally in agreement with what you said about letting dogs get an injection to go to sleep so why not humans? I said the same thing only yesterday - there's only so much one person can take. Sending you all much love pal xxx
Gayle - Glad to hear Martin's leg is nothing more sinister than an infection ...its one thing after another eh. Also must be a small relief to hear the appetite changes tie in with coming off the dex....maybe as he gets used to the reduction it'll come back? just means more chinese for you at the moment then! still no phone - Im sure Joe mustve put it in the bucket (may as well blame the baby...poor wee thing!).
Rona - great to hear your dads good news - that mustve been a massive boost for you all. Well done to him.
Well today not a great day either....my dad took another episode of dysphasia this morning and now is speaking all gobbldygook again....couldve told the consultant this would happen when she told us to lower the dex to 6mgs.....it happens every single time - seen it coming all weekend actually as he's been exeptionally poor -he's back up to 10mgs tonight...hoping the speech comes back in a day or so....it normally does. Anyway peeps, love to one and all and thinking of everyone reading...sorry ive not mentioned names....tiredness and sadness seem to be taking over at the moment, lotsa love Lesley xxxx
Glad that you and Paul had a lovely time up in sunny Scotland, you both deserve that. Has Paul or did he he have very sore joints when he came off the dex, Martin walks like a 90 year old man, his knees in particular are very sore, the gp says that it is withdrawel symtoms of the dex, also he has extreme paranoia, doesnt like me to leave him, doesnt like me be on the phone to my friends or even on the computer and thirdly his appetite is very poor, however today he has eaten a little better, here's hoping things are getting better, hope you are both well. xxx
love to everyone else special thoughts to Lorraine at this difficult time for her and her family.
LORS - You have made the right choice about being at home with your mum, you really have. The syringe driver will make her very comfortable. Just be beside her and tell her everything you want to. She knows how much you love her..of this there is no doubt. My heart breaks for you it really does xxxx
Well one month ago tonight for us...what a blur it has been. Dont really have much to say lately...just hope that you and yours are all as well as possible
Lorraine, ((((((bighugs)))))) to you and your family, hope your mum is comfortable. xxxxx
Becca, a month already, time flies by so quickly in BT world, love to you and your family. xxxxx
Lesley, our post crossed over last night, so sorry to hear your poor dad is going through this all over again love to you all. xxxx
CH, think of you and W today, you are both in my thoughts and prayers. xxx
love to everyone else thinking of you all. xxxx
Well, I feel so refreshed today, went to bed last night at 9pm and was asleep 5 mins later, LOL and that was me until 7am, got up and done all my housework and feel so much better. Martin managed to eat a proper meal last too, and is starting to look a little better although he is still in great pain, in his legs and knees :(. although its still an improvement.
hi Gayle, glad you are feeling better and that Martin has improved a little, that's encouraging. with the school hols coming up hopefully you'll get some good weather to spend lots of time at the caravan. xx Lorraine, hope your mum is comfortable and that you feel some relief yourself not having to go to work, sending you strength and lots of hugs xxx well its back to work for me on Monday! love to all diane
