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.
just a quick note to say hope all is as well as it can be - tho' notice Izzy you're husband is struggling with the chemo - Has he got anti-nausea tabs to take ? D went through the first 6 weeks and never needed them but he's just finished the first cycle of the higher dose (5 days on, 23 off ) and to begin with first day he took it and being over-confident we didn't bother with the anti-nausea drugs ..Boy was he sick! from then on for the next 4 days he took them - 2 Ondansetron and 1 domperidone an hour before the tmz in the morning and then 1 more domperidone after lunch - that was enough and then he was fine. I hope you can sort it - D was so miserable the first day and i know how horrible and helpless it leaves you feeling... good luck xx
Hi Carrie - Steroids !!! GRRRRRR!!!! you can't live with 'em -you can't live without 'em !!! I hate the effect they have - D gets very quiet and withdrawn - no sleep problems or aggression but more like depression - he goes really into himself and it's not nice PLUS they make him confused and yet he's supposed to be taking them to help with confusion - duh - I can't tell what's caused by the tumour- what's caused by the treatment and what's caused by the steroids !! We can't seem to get down from 8mg - he had to go up to 8 about 3 weeks ago because he was struggling with the aftereffects of RT - real speech problems and confusion etc etc - we seem to be stuck on that dose and can't get down - It's that bubble thing again, Gayle where you just go along in this horrible capsule watching the rest of the world go by and looking at the man that you love looking blankly back at you and you think How did this happen??
It's a weird feeling when you've been so close to someone to see them lost in a fog - I really miss the way we used to talk - it's ironic - the one person you really want to talk to and suddenly it's the most difficult thing to do - A bloody awful thing ! Never mind, girls - try and keep your chins up and just hold those poor men tight -
Love to you all , take care and sleep well,
Joan xx
FormerMember
Hi everyone
Izzy hope your husband is feeling better glad you got some good advice from the others fortunatley Martin has not been affected by sickness only tiredness so I dont really have any good advice for you on what your going through at the moment. Joan again how true your words are I miss my Martin so much, the bloody tumour has made him in to a completley different person he is so dependant on me now, its kind of like having another child I know that sounds harsh but it is how I am feeling at the moment dont get me wrong I am so grateful to have him and I love him dearly but our relationship is so different now, I feel so robbed, this must be the worst cancer in the world, brain damage to contend with on top of the physical problems, I wish someone could find a cure. I feel so tired just now not been sleeping so good think its because we get the the scan results tomorow , nearly slept in for Martines school today as I was up most of the night, just drifting into a nice sleep and the alarm goes off time to get up typical.
love Gayle xx
FormerMember
Hello everybody
Thanks to Robin Joan and Gayle for all your help and advice once again. My hubby is a little better today after getting another injection from the doc I was told it was just about finding the correct dose and type of anti-sickness hopefully it will be better next cycle. goodluck for you tomorrow Gayle I shall be thinking and praying for your dear Martin I hope all goes well for you both and your little girl.
love
Izzy
X xx
FormerMember
Hi folks,
Just wanted to wish you luck for good results tomorrow Gayle.
Izzy - nice to hear your hubby is better today - long may it continue. My dad's never had any chemo so far so no experience of it all.
We've not had a good run of it the last few days - my dad had severe dysphasia on saturday night so we had to call for a doc - his steroids have been upped from 3mg to 6mg. Still no change today and his dysphasia is just as bad - he doesnt seem too concerned by it all (which is a blessing) and is talking on a loop - all very strange indeed. I called his nurse specialist who says she doesnt think it would be the tumor at this early stage but to see how it goes tomorrow and his gp has given him another prescription for antibiotics as he is coughing up pleghm and blood? No two days are the same are they....we seem to jump from one thing to the next. Oh well, today is another day.
Love to all Lesley xxx
FormerMember
Gayle, Just to wish you both the very best for tomorrow. xx
Lesley, Does your Dad have a chest infection or maybe bronchitus that could explain the phlegm and blood? We have been advised to call the hospital if B gets a high temperature.
Love,
CH xx
FormerMember
CH, I think he may have a bit of a infection as he's been coughing a lot but his temp seems fine - he had pneumonia in Nov but recovered brilliantly from that. Seems to be one step forward and two steps back at the mo. Hope the dysphasia goes in the next few days and we get to the bottom of it one way or another - it really is hellish.
xx
FormerMember
Lesley, dysphasia must be such a distressing symptom and potentially frustrating for him and for you. But good that he seems relaxed about it. Is it odd that your nurse thinks it isn't the bt.
I hope you get it sorted out soon.
Love,
CH xx
FormerMember
Hi everyone
Good to see your husband is doing better Izzy that will make you feel alot better long may it continue.
Lesley sorry to hear that your dad has not been keeping well, if its any concellation Martin has picked up a few chest infections and had anti-biotics I think its just because their immune system has taken such a pounding with all the treatment, hopefully he will pick up soon best wishes.
CH and everyone else thanks very much for the good wishes for tomorrow I think the only way that I will sleep tonight is if I take a box of Tamazapan, waiting for these results is one of the worst feelings in the world.
love Gayle xx
FormerMember
CH, I think the nurse didnt think it would be the bt growing at this early stage (but these damn things are so unpredictable so i dont get that really). She thinks it may have more to do with the slight infection bringing it on. I could tell last week something was going on and he was deteriorating a bit though. It seems less distressing to my dad as it really appears to have done something else to his brain, hard to describe but like he's not completley "with it".
Hope the sleeping tabs work Gayle, I've taken Nytol the last couple of nights - not as good as Temazapam mind!
xx
FormerMember
Hi
Gayle just posted on we talk but read this one too and realise tom is a big day for you so just wanted to make sure you know I'm thinking of you and good luck for tomorrow - keeping everything crossed for you - its crap waiting for results of any kind - but something so serious its a million times worse.
off to serve up a huge dinner for hubbie who cant stop eating!
