hHello we are a bunch of people who have all been touched by Brain Tumours, we also have our own message boards if you want to look back on what some of us have already written.
I have set up this new Message Board because unfortunately this group seems to be growing & we all seem to get great comfort from talking to each other & sharing our stories, medical questions & even having a giggle. But as this group was growing I for one was losing who I had replied to, so if any of you would like to join us for a chat please do or if you want to carry on using individual message boards that’s fine too I’m sure we will find you there.
I look forward to our first chat…..on this board.
Kind Regards & love to my buddies who are already established on here (you know who you are).
hello to all lovely day again its such apick me up eh!
hi nicky sorry your not too good love dont beat yaself up too much it has to come out sometimes and none of us are any different i think we have all had those days when we want to walk away. Glad harry is ok some months dave flies through the chemo and sometimes hes ill too. once again i have increased the steds doc ok*d this morning. i will ring the hozzy tomorrow as his oncologist is unavailable till then (LAFF). He is now on 5mg per day which is creeping up im very scared now too about my futur as im a wreck. Yes results on fri so i will post and let everyone know either way. hope your little ones eyes are better its nasty that thing i cant spell.
I will be having two lessons this week have gone for evening now so i can keep eye on dave more during the day and he will have the soaps to watch to.
Jane dont be doing too much work in that stuffy ofice today as i feel guilty sitting out in the sunshine doing nothing all day !!!!!!!!! hope your lovely man is ok and not getting grief fom work at the mo. how are the doggies?
mel and corrin i am also thinking of you lovely dads hope they are ok.
julie post soon for a catch up love on how you are!!!!!!!
love to anyone else reading these posts keep those chins up love shirleyxxxxxxxxxxx ps iv lost 4 pound on my diet !!!!!!!!!
Slept ok again, but still on sleeping pills, just can't seem to fall asleep for hours without them these last few days, don't know why.
I now haven't taken any painkillers since thursday, I'm on 1mg steriods,1 ranitidine ( whilst 'm on the steriods) & 1 epanutin 100mg, finish that 1 tomorrow.
I'm feeling strangely okay, actually quite normal.I actually don't feel ill? My foot is stil bruised but getting better & my head is a bit niggly.
My radiotherapy starts end of may for 6 weeks, then when I'm strong enough I can go back to work.
Just been doing loads of ironing & washing.
Lovely weather here today.
Nicky I am sorry to hear your news, How old are you? I am 32 & my DH is 31, We don't have any children yet, We lost 1 on Xmas day 2005 when I was 14 wks preg.
Thanks Shirley for your message.I try not to beat myself up but I know I have been awful to Harry some days.I do generally class myself as a strong person but lately I feel like I am falling to pieces.I notice on the news this morning new research on post-natal depression – I said to Harry maybe I have that!!!Funny when Harry was diagnosed the Heath Visitors were always contacting me, very concerned now I hear anything from them, it is no wonder depression is high you get forgotten in the system.That is my moan for the day.
Harry is starting the have he steds reduced which is good.He is hoping he can lose some weight now.
Hi Julie.I have read about your tumour.It is funny Harry says the same as you that he doesn’t feel at all ill and feels everything is normal.
I am 34 and Harry is 48 (bit of an age difference – Harry has a mental age of 40 he loves joke around and is very into fitness and rugby).I read about your lost and feel desperately for you.I feel very lucky that we have our daughter but do get scared about her future especially if daddy is not around. I would love to have another child; Harry has ‘banked’, so I hope that we will be able but only time will tell.I do have some moral/ethical issues about bring another child into the world when there is a risk they maybe not know their daddy (I welcome anyone’s thoughts on this).
Where you able to store your eggs????You never know what the future holds for you.
I working from home today so I am going to skive off and pot up some plants in the sun
They don't like to do egg banking, recent changes in cost & legislation, But as I am only having Radio, it won't affect me. Our private health insurance doesn't include assisted fertilty & egg banking is quite expensive.
1 of the reasons I'm having Radio not Chemo is so I'm not left infertile.
Is your husbands head numb & hard? Mine is from the cut till about where my head goes down if that makes sense lol.
I know exactly what you mean by feeling guilty. I sometimes get cross with Den for things that are not his fault, I say to 'SURELY you remember so and so' of course he doesn't and that is the direct result of the tumour.
Before all this happened he was so active, even though he is 72 he loved doing the garden and used to walk Jack to school and pick him up every day. I even used to joke about him gassing to the mums at the school gate!
Now all he seems able to do is watch daytime TV ( he can work the remote control OK- strange that!) He starts off with Jeremy Kyle, then Trisha, then quickly over to Jerry Springer followed by Maury !!!!!!
The thing is I must admit I did used to sometimes watch Jeremy Kyle, just to have a laugh at the awfulness of it all. Den used to take the mick out of me but now the boot's on the other foot and although in some ways we can laugh about it, it's actually very sad.
And by the way, don't bother yourself about the age difference, den is 27 years older than me, yet we have a lovely little boy and (hopefully) will celebrate our 11th wedding anniversary on Fri 4th May!
I am 46 years old and believe you me Nicky, if I had the chance of another baby with den I would grab it no matter what. I really wish now that we'd had more children but my mum died when I was 6 months preggers with Jack and I suffered with post natal depression so I guess I just left it too late.
I hope Harry is feeling better and by reducing the steds he may be able to lose some weight. Den has put on nearly 1 1/2 stones since he came out of hospital- nearly the same as me!!! - only joking, although I have put on weight I think due to having to give up my job and horse.
Special love to your little girl, what is her name?
I only came back up to the computer to gather all the rubbish from my office – rubbish day tomorrow and couldn’t resist replying.
Julie, wise choice about the radio and not the chemo.It is strange the laws for women on egg banking as the laws for men and ‘banking’ are not complicated.With modern technology these days I would have thought they would have been able to store eggs.What gets me is I have access to Harry’s safe deposit for up to 3 years after his death (which hopefully it doesn’t come to that) now that to me throws up some moral issues.I hope Julie you will be able to enjoy motherhood in the future.
Your question about Harry’s head, he has mentioned it being numb but not hard.He does complain some days of it hurting on the scar but sometime I think it is more to do with him forgetting to put sun cream and a hat on and it gets sunburnt.
Gill you made me laugh about the school mums….
Harry forgets loads of things and someone mentioned this before, I think it was Jane – Harry suddenly starts a conversation and I have no idea what he is talking about but it is because he has been thinking about something and then starts chatting to me about it.Before he was diagnosed this happened a lot and we would argue about it.
His speech can get very frustrating and I try not to snap back at him but I catch myself doing it. However it is better than it has been in the past.
Our daughter is called Amelia and as a gushing mum she is lovely and very good.How is your boy coping with all of this??? What is his name??
HELLO ALL JUST THOUGHT I WOULD JOIN IN AS YOU DO EH MY DAVE SAYS HIS HEAD IS NUMB AROUND THE SCAR AREA EVEN WHEN HE HAD THE MRSA
HEWASNT SORE. I THINK ITS LIKE ANY SCAR FEELS LIKE WHEN YOU HAVE HAD A NEEDLE AT THE DENTIST TYPE OF NUMB AS ALL OP SCARS DO TILLTHE NERVES NIT BACK.
GLAD HARRY COMING DOWN THE STEDS LADDER AND JULIE YOUR ON QUITE A LOW DOSE THATS A POSOTIVE LOVE EH. REGARDING THE SLEEP JULIE DO YOU TAKE YOUR STEDS EARLY IN THE MORNING AS THIS WILL HELP WITH THE NIGHT SLEEPING DAVE WAS AWAKE ALL NIGHT AT FIRST AS HE WASNT TOLD TO TAKE THEM EARLY. JUST A THOUGHT!!!!!! LOVE SHIRL
It's great to find you again! I think that with the prozac and all I must be losing the plot !
I hope that your darling hubby is feeling a bit better today. I call him ' Zebedee ' as he always springs back !!!
I am on a bit of a downer tonight as it is 10 years ago today that my mum died of brain cancer. She had Lymphoma and not GBM like our loved ones, but I was six months pregnant with Jack at the time and he would have been her first grandchild. I'll always remember her saying ' I'm going to beat this to see my grandchild ' Unfortunately she never did.
Den is on 8mg of steds so I wouldn't worry too much about 5mg as my Mac nurse said that 8mgs is not a high dose.
I really wish you all the best on Friday, keep your chin, chin, chin up !!!
I think my head is becoming less numb & hard now.just very very slowly.
I take my steroid straight after breakfast.
This sleeping problem just started again last monday, don't know whether I was nervous about my CT scan/skull mould fit on weds, though didn't feel it or about my Mum moving down here tomorrow!! I am so excited!!
I've had a headache for about an hour but I really don't want to go back on painkillers as I've been off them since thursday.
HELLO GILL IM SORRY YOUR MISSING YOUR MUM LOVE ITS THE WORST TIME EH ANNIVERSARIES AND STUFF SHE WOULD BE SO PROUD OF THE WAY YOU ARE COPING RIGHT NOW IM SURE SHES OUT THERE SOMEWHERE HELPING YOU THROUGH THIS TIME.
JULIE DONT THINK YOUR NOT COPING BY TAKING THE ODD PAINKILLERS LOVE EVEN I TAKE THEM MORE THAN DAVE AS I GET STRESSED OUT STARTED ON MY KALMS TODAY LOL . ONLY THING IS THEY BUNG YOU UP LOADS EH.
WE GOT THE WILL SORTED THIS EVENING IM SO GLAD WE CAN FORGET THAT AWFUL SUBJECT NOW AND PUT IT TO THE BACKOF OUR MINDS AND GET ON WITH STUFF.
DAVE STILL LOOKS AWFUL BUT YES HE IS LIKE ZEBEDEE GILL IM SURE I CAN SORT HIM OUT NOW AND IF HE NEEDS MORE STEDS THEN HE WILL GET THEM IM GONA INCREASE AGAIN TOMORROW IF HES NO BETTER. I WILL BE THINKING OF YOU ALL OVER THE NEXT FEW DAYS AND WILL KEEP YOU ALL UP WITH STUFF AS AND WHEN LOVE SHIRLEYXXXXXXXXXXXX
