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.
Morning all, Lisa - I think sometimes we know what is best for our loved ones more than the professionals and if it makes them happy and isnt dangerous I say do it!
I had a text from Gayle at a very early hour this morning to say they were on the plane & she didnt get time to get on here before they went but she wanted to say bye to you all and hope that you all have a good week xx
Right of to get kids ready for school will be on again later
Becca & lesley - thinking of you both - please post soon worried about you girls xxxx
Good morning everyone. I have just been catching up on your news after a long weekend away visiting family in Holland. We had a lovely time but it's good to be back at my Dad's now too. He took his last temodal today from the first 6 week course and has gone back to bed! I wonder if he will get less tired now that he is on a temodal break? Anyone know? Also does anyone know how long the tiredness from the radiotherapy can take to improve now that that is finished? Also the hair loss - when does that start to grow back?
I don't really have time to write a long message but am thinking of you all - especially you Jay for tomorrow. Emma glad Mathew is a bit better, hope all is going well there.
Carrie, great that your friend from NZ is over. I'm amazed he's come for such a short visit. I'm here for 3 weeks.
Lesley hope your Dad is ok, thinking of you and your family.
Izzy hope the scans went ok and you are all well.
Gayle - happy holidays!
Hello to the new people. Just to say I have only just started posting here in the last few weeks so do join in. It can take a bit of time to get to know everyones situations but everyone is so friendly, helpful and welcoming and most importantly know what you are going through. Hugs to everyone else too.
Lesley – Thinking of you lots at the moment. You really are going through the mill aren’t you. Hope things have settled down a little today (I think I must have said that a few times to you recently).
Debbie – Hope you’re feeling better now. Were you able to enjoy Mothers Day?
Diane – thinking of you. Hope hubbys as well as he can be.
Emma – Thanks for passing on Gayle’s message. I hope things are better with Matthew. Are you back at the hospital on Thursday? Hope it’s not making you too tired to. I think sometimes people on the outside sometimes forget that as well as dealing with this we also have to deal with all the everyday things too.
Lisa – Keep doing what you’re doing with your dad. I’m sure that, even though he’s not communicating, he enjoys having you, the family and the dog around. So long as he appears comfortable I think it’s much better than leaving him on his own somewhere.
Rona – Hope your weekend in Holland was enjoyable. Is the picture of the tree from your profile taken at the botanical gardens in Wellington? We visited there and thought it was lovely. Can’t comment on the hair loss as B’s thinned at the sides, but at the moment he has more hair than he would normally have. The tiredness too I’m not sure about. As B is immobile and getting more tired as time goes on I think this may now be the effect of the tumour, although I have read that the effects of the radiotherapy can last for up to six months.
Izzy, Becca and Jay – thinking of you and your families lots and sending you big hugs.
Joan – Since you returned from your break we haven’t heard from you much, hope things are ok.
CH, Jean, Muir and Reland – thinking of you all.
Our friend from NZ has now left. It was great to see him, but also very emotional when he left. I still think it was so good of him to come all this way for three days.
Had the district nurse in today. She’s annoyed me so much. I asked whether some of the equipment we have been sent could be changed and she told me I should now go through the OT. The OT had earlier told me I should be going through the district nurses! It seemed that everything I asked her about she passed me off to someone else. I hope you all have more help from yours. I don’t know how elderly people cope dealing with people like this.
Hi all, hope everyone is bearing up and having a daily smile?? Sorry I haven't been on over the weekend but Rob has been having seizures every day since Friday and my eldest boy ended up in the cardiac unit on Friday night, chest pains, thought it was a heart attack but turned out to be an ulcer brought on by the stress, he's ok bit shaken, but God what a weekend we all had. My youngest just broke up, thought he was losing his big bro as well as his Dad, and Rob and I felt guilty for putting too much on him, he now runs our family business and he's not good at delagating. Boy oh Boy the b******d of a thing runs deep doesn't it, not just Rob it's effecting but everyone connected to him.
Ok moan over, I'm smiling now, trying to feel better about life in general. I must say that this site is amazing, I couldn't talk to anyone about how I felt or how it was effecting the family but this is different, it's like writing in your own diary, your thoughts, your pain, your happy moments, but the difference is you get a reply from people feeling the same as you, thank you, thank you thank you, and yes I will be back.
Rona. the hair does grow back, find a good hairdresser to match up the baldy bits, probably a number 2 to start and keep him going back till the new hair blends in with the rest, nobody will notice. the tiredness did get better initially about a month after the RT & Chemo stopped but it came back with a vengeance about 3 months down the line, when they changed his anticonvulsants to Keppra, now he's tired all the time and has even fallen asleep when eating!!
Anyone else had this problem with the Keppra?? I'm going to try and get them to change it again.
Carrie, your district nurse should be shot, she is your life line and is there to help you. I have to say that we have been really lucky both with the macmillan nurses at the clinic and our d.nurse, she is brilliant and goes out of her way to help, she even phones to make sure we are ok inbetween her visits, so have a word with your practice and see if you can get another assigned. Hope all goes well for you.
Speak again soon, take care all of you (will get to know all the names before long.) xx
Just a real flying visit from me as Im about to head back up to the hospital...it really has been a tough few days.
Emma - thanks for asking after us - is Matthew's scan this week? Good luck for that. If you get a text from Gayle, tell her to have a fab time in Benidorm from me...hadnt wanted to wish her happy hols before she went but have hardly been in the house over the last few days. x
Becca - If you read this, will text you later to see how things have went today - I had a quick look at your full story over on the other thread and it amazes me how similar our stories are from the weekend..unbelievable. Cant believe it took a 3rd doc to admit your dad to hospital? Hope you managed to get the scan results today and it turns out to be nothing more sinister than a virus and he bounces back again. We were told it may have been a bleed in the brain too but it turns out it wasnt. Lotsa love.
Lorraine - Sorry to hear things arent good with your mum at all - it must be so hard trying to juggle your full time job. Will still hold you to that drink sometime! Speak soon pal
Diane - Hope your hubby is ok just now? ...no more chippies I presume?!
Carrie - Now that district nurse really sounds annoying! Nothing worse than people trying to pass the buck to others....I share the "aghhhhh" with you! Hope B is ok.
Jay - thinking of you for tomorrow. Sending lots of strength your way.
Jo - I echo what Carrie says - we've not heard much from you, really hope things arent too bad your end?
Reland, Greentree, Izzy, Debbie and all others - love to you and your families too.
Well to cut a long story short things seem to have deteriorated badly since sunday - my dad was admitted with dysphasia and right sided weakness on sunday and initially they thought it may have been a bleed in the brain. Since then he's had numerous seizures - I've sat holding his hand through a lot of them - his steroids have been upped and he's been given lots of midzolam. His consultant spoke to us last night and said they will know more over the next few days but it looks (they cant be sure) that this might be the beginning of the decline as his scan showed huge amounts of swelling. They asked us to have a think about DNR and hospices. Today, he was extremely agitated, his leg was going into constant spasms and he sleeping quite a lot - he seems to know quite a bit of whats going on though which i find more distressing than anything, he wanted me, my mum and sis to leave as he was really agitated - i really wish he was in a state where he didnt know what was happening. This all seems surreal even as i type - he could essentially bounce back if the steroids reduce the swelling or this could be the beginning of the next stage? We'll know more in a few days time i think. Im just going back up to the hospital now so will hopefully keep in touch in a day or so. Thanks again for thinking of us. Lesley xxx
justn a quick note managed to get a computer in this pub albeit 40 year old, I cant really make out all your post as the screen is not very good here, will try and find a better comp later on in the week and catch up with you all, hope you are well.
Emma, hope you are all well got your text I am on the vodka tonight, speak to you soon. xx
Lesley and Becca, hope your dads are well. xx
Jay will be thinking about you tomorrow. xx
Carrie, Debbie, Joan, Diane, greentree, Izzy, Julie, Ch miss you all but enoying it here, Martin is very well and was great on the flight, Martine is hyper.
Gayle - I thought my eyes were deceiving me when I saw your name. Great to hear from you. So pleased that Martin's well and I hope Martine's calmed down a little.
