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.
Firstly - aplogies to Carrie and Emma for confusing the days...my head is all over the place at the moment and the ability to retain information is being hindered by lack of sleep - but thats my only moan for the day - cannot be doing with this low mood, it just doesn't suit me. :)
Carrie - i love the sound of your pretty coloured cardigan for Thursday, i hope your cold is away soon and that the sun comes out tomorrow. lots of love ang hugs lady xxx
Emma - its so nice of people to want to be involved and help out as much as they can isn't it - but i know how you must feel about being given some space, i think more so my mum can identify with that as its non stop for her too. Could someone maybe take the kids for the afternoon and let you get out for walk or a coffee and do something nice with them - poor wee loves will be all over the place. (hope you dont think im butting my big nose in : ) ) Love the music choices too, the day you have planned sounds like a perfectly wonderful celebration of Matthews life xxxxx
Gayle - lots of prayers and fingers crossed for good results. xxxx and cheers for the hugs ;) x
Hey Lesley - we should have our virtual drinking session soon me thinks :) hope dad is doing a bit better, its horrible to watch how vulnerable he has become isn't it, but again at the end of the day we just keep getting on with it and cherishing the time we have left. They will always know how much we love them. Big hugs to you too xxxxx
LORS - Hope your mum is settled now, i have only ever witnessed one seizure and it was so scary, your mum will be so glad that you are there to help and re-assure her..as will your dad. Hope you have a lovely day with your friend, i meet mine on the walk home from work every night, last night she told me the date of the wedding 15th August next year...two weeks after im the bridesmaid for my sister - not quite 27 dresses but getting there. XXX
To everyone else i have missed out, sending massive hugs and lots of love
Hello everyone, just a quickie, Sallye, I'm definitely not an expert but I think that the word significant is being used in a medical or statistical way. I had exactly the same train of thoughts as you had when I read those papers but I think what they were saying was that the result of the trials when also using tmz was statistically significant, the improvement was not down to random chance. So, if I'm right in how I understand it, the 2.5 months is an average over many people tested in all conditions and should not be taken to mean 2.5 in any particular case. When B was having rt + tmz the neurologist was just getting the two year results from some tmz research and although I know not everyone makes that, more people did with tmz than without. I hope this makes some sense?
Sorry ladies this is a really quick post my bambino has chicken pox and cant stop scratching ,then bleeding then crying!life is tough havent seen dad for 6days due to cpox both finding it hard especially as he has really bad chest infection and still mouth full of ulcers!!Mumcant get him to go to hospital!!
Anyway enough of that to two ladies who have supported and inspired me with thier amazing strength!!
Carrie-much love and support for tomorrow Im sure you will give your beloved B a wonderful tribute as hes such a special man Im sure youll look beautiful in your cardigan good choice!!
Emma and the girls-Thinking of you all today and for friday,me and my eldest son were singing along to Mr loverman today(its one of his favourite songs)when I read your post I laughed and cried at the same time.Strength and love to you all.He will be loving every minute f your tribute to him!!
To all the lovely ladies(and gents)reading tonight Im sorry I havent had time to catch up will do wants the c.pox has left us!! Peace love and hope to you and your loved ones Debbiexxx
hi all Sallye, CH is right in that the word significant means in the research there was a statistically significant improvement - th e 2.5 months refers to the average over hundreds of patients ( about 600 if my memory serves me right) compared to patients who di not take TMZ. the figures for 2 year survival are even more significant, in that a far larger proportion of patients taking tMZ survive to 2 years compared to those who don't, again these are just average figures. so it can be very hard to know what is the right thing to do in any one individual patient. It is probably also wise to consider that your mum may want to carry on treatment to be able to keep up the hope of a cure - I know this was the case for my hubby, who persisted with TMZ even when it was clear to everyone else that it was not helping. I'm not sure that discussing with her about the stats will be to her benefit, unless she is the sort of person who wants to know those sorts of details. Maybe the way to approach it would be to talk around the quality of life issues, or perhaps she could have a longer break from treatment so it does not feel as if she has had treament completely stopped. Or may be they could reduce the dose a little, or try different anti sickness pills?
Carrie, just wanted to say I hope your day goes as well as it can tomorrow, will be thinking of you in your new cardi! Sending you lots of hugs and strength to get through. xxxxxx goodnight all diane xx
Sorry I haven't been on much. Life seems busy at the moment.
Carrie I will be thinking of you tomorrow. I like the sound of your red bag! Hope you're ok. Sending you strength to get through tomorrow.
Emma it's nice to hear how you're doing. I imagine it must take time to hit you especially as you are so busy and always have people around. The funeral you have planned sounds like such a special tribute to your man. I love the music! There won't be a dry eye in the place. Hugs & strength and thinking of you all.
Sally it's so hard to make decisions like that isn't it. Like the others have said it can be hard to apply something to one individual (especially one who is so dear to you) when you are looking at results for a large group of people ina study. It would be worth seeing what the consultant's opinion is maybe. If he knows how bad the sickness is. I know he can't tell you what to do but they (or a specialist nurse) may help with the thought process?? Do you have a macmillan nurse?
Jay hope you're ok.
Becca sorry to hear you're dad is not so good. You're allowed to feel down at times! We all do xx
Lesley glad to see your dad is out of hospital. How frustrating that he has these problems with his leg on top of everything else. I hope it improves soon.
Gayle thinking of you with the scan. What a hard wait that is. Enjoy the caravan and hope you all have a relaxing time.
I'm sorry I can't remember who else I wanted to respond to - will have to go back and read and post again!
My dad is still very tired. He wants to ask the consultant what their longest survivor is!! So hard to hear him thinking about these things. My brother will be seeing him this weekend so I'm glad about that.
Better go, need to get things done before my baby wakes up! xxx
Just a real quickie tonight, still at my mums and its very difficult to grab a moment:
Carrie - I hope you managed to get through today ok - big hugs to you..hope you manage to let us know how you are when your ready again.xx
Emma - Your in my thoughts so much too for tomorrow - Sounds like Matthew will have an amazing send off. Love your Shabba Ranks choice...im sure that will bring a smile to many people through the tears! lots of love and strength for tomorrow. xx
Lorraine - So saddened to read about your mum's seizures my friend... You mustve been so shattered that night, sleeping with your clothes on in case she had another one...thats just awful. Hope she's picked up a bit over the last few days and they havent caused her more damage. xx
Becca - Thinking of you lots love...hope your dad is getting sorted out as I speak...as I said before, he's such a trouper so will hopefully bounce back in the next few days. When is your run? Was it this weekend? xx
Gayle - hope your mean friend isnt making you drink tooo much at the caravan ha ha!
Rona - nice to hear from you over in NZ - it must be so hard for you being so far away. Hope your baby is doing good and bringing you lots of joy. xx
Debbie - Nice to hear from you too....shame your bubba has chickenpox, how old is your wee one? They're so awful...amber had them when she was a year and a half...absolutley covered...in her ears, up her nose...its so bad for the wee souls...plenty of calamine and cuddles then! xx
Susan - Did i read you had an appt for Paul tomor. Hope you get on ok. xx
Eileen, Joan, Izzy and everyone i may have missed tonight,
Well all at this end isnt great really....cant quite put my finger on whats going on but see a deterioration in my dad over the last few days, getting words mixed up, cant write or do his crosswords any more, has went very very quiet - he told me tonight right leg (tumour is on left) is not working properly. I phoned his specialist nurse earlier today and she told me to put his dex up to 8mg...he doesnt know, he doesnt have a clue what he takes nowadays and gets very annoyed with me if I say he might need more help or if he thinks Im speaking about him to the professionals...he tells all the medics "he's great" and "perfect" then changes when they leave. Oh well, hopefully increase in dex might work somehow. Its all so sad. I still feel very sad and angry tonight. Sad that there is no cure at all and that we've all been brought together by this awful illness and that we have to watch our loved ones suffer in this terrible manner.
Sorry folks, promose to be in better fettle next time Im on.
Well, I’ve survived today and I am so pleased with the way the day went. I think B would be very pleased with the send off we gave him. I asked four of his friends to share their memories of B, which worked really well and was so personal, and the minister was really lovely. The music I chose for the day showed the wide variety that B listened to. Everyone came in to part of the opera La Boheme, we then had Fly Me to the Moon, Gladys Knight singing The Way We Were and finally I’ve Got a Lovely Bunch of Coconuts (which B always said he wanted played at his funeral!). The sun shone, and it was lovely to catch up with everyone outside afterwards. We then moved on to one of our local pubs. I think about 200 people may have turned up in the end, they couldn’t all get in to the chapel and speakers were set up outside.
I wanted the day to be a happy one, and I managed to get away with very few tears as I tried to focus on the good times. I’m still sitting here now with a little smile on my face having looked at the photos a friend took of everyone who was there.
I know the next days, weeks and months may be tough, but I know in my heart that during the last few months of B’s life I did as much for him as I could have and was there as much as I could be for him, and that today will be remembered for the wonderful things people said about him and the way that everyone will remember B with love and a smile.
How beautiful. Was thinking of you yesterday as everybody was and somehow knew it would be an event of real humour, kindness and dignity for B - that's how you've always been and made him for us. haven't posted much lately for various reasons but you and Emma and your dear men are in my thoughts so much. So much love to you and the memory of B - I'll never be able to think of the coconut song now without thinking of him!!
