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.
Yes never give up we are told here are other options if it returns- stem cell therapy and experimental vaccine therapy -we will try everything and anything and yes a lot of hope and praying- having to wait a week to speak to surgeons must be torture for you all- take care love Diannej
Grantsnana, never give up keep hope alive and keep praying for that cure, we never know what is around the corner. xx
Dianne, hope your daughter continue to be well, as you say there are so many treatments available out there.
Its a year today since I last worked, I got a call at work from our local general hospital saying that Martin was being transferred the the southern gerneral neuro surgical hospital in glasgow, since then I have been with Martin, one day I shall return to work who knows when?? I am just enjoying life with my husband and daughter, this year has flew in so fast I can hardly believe that it has been a year since this nightmare started.
Anyway folks we are off to the caravan for the weekend country & western theme weekend Martin shall be in his element. Hope you all have as good as weekend as possible love to all my lovely friends.
Jamie has finished his 1st week of radio and chemo therapy with pretty much no problems except Monday night, he was very ill vomiting every hour, kept the whole house up including baby. Did cross my mind is it worth putting Jamie through all this just for more time but thnakfully I woke up and thought no way in this world would Jamie not try it as its his way as fighting it as i think he feels so helpless at times.
He did ask when he'll next have an MRI scan, i told him at the end of this treatment and did feel i should mention to him that it may show the treatment has had no effect but we must not give up hope and we can try other things. We are definately over due some good luck as Jamies work are messing him around (his is the only wage coming in) and our life insurance have said they wont pay up so think i may start the lotto every week, luck must change soon!!!
I had a rubbish week last week, very weepy and very negative but feel this week we're just getting our heads down and arranging ourselves around treatment which is probably why im feeling brighter. One thing i am still struggling with... Prior to Jamie becoming ill we always talked about our future like what sort of house we'd end up in, we'd move abroad and things about when Connors grown up. But since the diagnosis I have'nt been able to talk about these things as i feel like im lying if i do, does anyone else do this?
Any how baby to put to bed and wait to be woken up by him crying about his poor teeth coming through, sometimes i wish i could pack myself off a whole weekend and do nothing but sleep! No matter how much i drug him up with calpol and medised the monkey still wakes up!!
Laura nice to hear from you again on here. Just wanted to say I know all about little monkeys waking their mummies up at night! My 10 month old is a bad sleeper and has been worse these last few nights with a cold. (It is winter here) I can so relate with wanting to sleep all weekend - I'm exhausted. Hope Jamie is doing ok. We found it hard waiting for treatment to start and at least felt we were doing something once the treatment has started. Hope he continues to cope well and has no more vomiting.
Gayle have a great weekend. Sounds like Martin will be having fun. Wow - 1 year, that must feel strange. We are coming up to the 6 month mark. I so remember all those phone calls in the middle of the night here in NZ and the doctors telling me the scan wasn't normal. What a complete nightmare this is. Thinking of you all - everyone affected by this monster.
Well I'm flying to the UK on Mon so have some organising to do.
grantsnanna - good luck with the scan results :) and i hope that this F****** B****** of a beast has not returned! keep positive xxxxx love
have a good weekend gayle :)!!
welllll I finished the 340mg of temodal on friday which went ok but I dont feel 100% , im so tired but I cant sleep - very annoying. Been very down lately too, I spoke to my consultant he said I could try some councling - but i dont really want too, Ive been thinking about it lots and i dont think thats the route i want to take and he said if the counceling doesn't work we can think of anti depressents but he doesnt want to give me moooore drugs so it looks like i got to give the counceling a go - which is fair enough but it feels like thats just reaffirming that something is wrong where as if i did just get some anti depressents where im taking so many tablets at the moment it would just fit in with the normal routine. which is what im CRAVEING a bit of normality, not adding new things to this mess.
It's not fair!!!! We shouldnt have to go through this!!
Your right Christie- no one should EVER have to go through this terrible disease, counseling can sometimes help- to talk to someone totally out of the situation to express your feelings and get angry or explore any emotions you feel- its not right for everyone and only you will know- I think talking helps it doesn't ever change the situation but it helps. H also has some problems sleeping she wakes up really early and watches TV.
Sometimes anti-depressants help -again they don't change the situation but they help to 'dull' things a little, its not surprising that low mood is part of this terrible disease and I would think its absolutely normal given the diagnosis and stress involved I cant imagine anyone not having low mood at some time when faced with a BT.
H has also said she would like for just one week her life to be to how it was- again commonalities in feelings that are normal.
Can you get some alternative therapies- such as relaxation, reiki or something that may help you to relax and induce sleep? Ive got a good tape if you would like a copy its is so relaxing (boring actually) but it does the job-I've given it a couple a clients who have found it helpful-
Keep your chin up take care keep posting love DianneX
dinne J - i do the same thing, just wake up and watch tv, count down seems to be on alot at 5 in the morning weekdays lol. I feel eeexactly the same as H, it would be amazing to just have a little taster of what life was like back befor this cuz it was going really well :( And yeah thats what i thought also about the couceling and anti depressents that it doesnt change the situation but with the anti depressents it wouldnt be adding another new thing to all these abnormalilties as its just another round of tablets, but Dr doesnt want to jump straight to them, which is understandable. yeah i think talking helps thats why i like it on here and you all understand, some of my friends are a little nieve and think the chemo clears it and ill be here when there 70 ect, i havnt got the heart to tell some of them the real truth though i can never seem to find the right situation because sometimes it feels like the right time for me, but then its always in the middle of something or its a rlly fun nice day n i dont want to spoil it, im slowly getting round to it :)
I have tried some reflexology and rakki at a macmillan center at the hospital when i was having the radio therapy, it was lovely, i forgot about that thank you i think i may do some of that again :) Is it a music tape or video as i dont have a music tape player anymore, thank you so much for your help :)
how is H, is she finished with the exams now? xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Christie its sounds as if you are protecting your friends you may be surprised that if you do talk to your friends as honestly as you can here that they may be not talking about it protecting you!-That sounds confusing -I think we all do that. H has a way of just dropping 'black thoughts' into the conversation when I least expect it- always with humor - it would be great for you and H to talk. The relaxation is a CD its someone talking in a hypnotic manner that makes you want to go to sleep- I could send a copy to you? H is off chemo for two weeks at the moment so this week she is a bit better but still tired and nauseous she has two more exams to go and then I feel we can have some more fun!- Take care Christie you are so brave and all your feelings are entirely normal given the situation, you all amaze me how you cope so admirably. XXX
Dianne j - I think your definately right about me protecting my friends, its a difficult conversation to bring up.
Yeah h seems brilliant, we have emailed a few times shes a lovely girl you must be very proud :)
yes please if thats ok to send a copy, i have h's email maybe i could send you my address through her if she doesnt mind.
ah yeah time off is always nice, is she on the tmz too? Does she tend to get more tired on the week she is taking it or does it carry on for a bit after? This time i seem to be very tired through the days but then i suppose its a combination of that and not sleeping so great.
H Had three cycles of temozolomide but first scan showed regrowth of tumour so shes now on CCNU and procarbazine the tiredness carries on after shes stopped -she has two weeks off by the end of the second week shes great then sadly she has to go back on it grrrrrr. I will get you address off H and send a copy of the relaxation CD try it- it cant do any harm! We've got BBC Lifeline coming tomorrow- they are doing an appeal for Brain tumour research and want H as a case study to know how its affecting her life- they will be filming a bit- dread to think what she will come out with!- but its all good highlighting BT as so little funding goes into it- Take care Love DianneJxx
