Glioblastoma Why Why Why <br/>

Evening all

sorry to see new people on here again. sorry not posted for a while hit that wall that we all do and had no words of wisdom for anyone - not sure I do now but need to waffle a bit so excuse me! had 3 nights of virtually no sleep - matthew has been getting bad night headaches and my youngest had the dreaded D & V bug and also kept me up so shattered as per usual! had a mad panic dash to hospital yesterday as matthew came up in a rash over the weekend and also had really bad pains in his knees and couldnt walk properly - I went into panic mode (although he didnt realise I was) the marsden were fantastic as ever took bloods which were normal and think that all this is down to the trial drugs and his dex - apparently they all weaken the blood vessels and can cause this PHEW! i do hope this is all it is - as ever he has been at work doing what he does best - getting on with it - wish I could.........

anyway hope everyone is ok - Julie ask away - we have been on this long and hard journey for over 2 years - if you read my profile I hope it gives you some hope in some way.

Hi to you all - sorry so so shattered havent got the energy to think of what to say except thinking of you all and big big hugs
Emma x

Hi Emma, firstly you are a very brave lady and congratulations on your marriage.

Stephen and myself have decided to get married when he is feeling better, he is just very tired with chemo and radiotherapy and we want to get married somewhere hot but his consultant said he cant fly yet.

Please can I ask you Emma when Matthew was diagnosed did they tell you how big the tumour was because unfortunately they couldnt remove any of Stephens but said it was very small approx 2cm.

How do you cope Emma? we have only known a couple of months and I feel exhausted all the time, I think its mainly the worry and stress of it all.

Just on a more pleasant note how old are your children and are they boys or girls, we have a son called Dan he is 12 years old and sometimes I think he handles this situation better than myself.

I have read your profile and it seems Matthew is really fighting this and that is brilliant.

Anyway both take care
Juliexxxxx

Hi Julie
SO SO SO sorry you have had to find this site - I am struggling all round at the moment - probably due to lack of sleep so I will try to be helpful! thanks for asking direct questions it helps me to help you!

Matthew - my hubbie was diagnosed in 2006, 2 days before his birthday - crap timing eh! he has worked all the way through apart from a week or 2 after the operations he has had. We got married 2 months after he finsished radio and had paritial hair loss which is his biggest moan in all the photos. his tumour the first time around was the size of a ping pong ball - sorry dont know what size that is but that is what the consultant told us. I guess in the beginning we were luck as it was on his brain rather than in it so they removed what they could both times.

how do I cope - I have no idea - I guess his fight - not that he would call it that - more like head in sand until last month has kept us all going, he thinks if he can keep 'fit' and keep going it will keep it at bay - and i guess in a way it has - his tumour is apparently massive and the scan and the person dont marry up i.e he shouldnt be doing what he is when they look at his scan it looks like someone elses. julie when I first found out I posted on this site once and then was to scared to look - i didnt want to hear about everyone elses issues, somehow i managed to carry on. Eventually i started looking more on here. It was really strange our life was fairly normal and what people were discribing here wasnt what was happeing to us and I didnt want to know the future at the time. We never discussed it as we just got on with it. Only when things went wrong did we discuss it briefly. My hubbie never new the prognosis until 2 months ago as there was no further conventional treatment for him. I have known the prognosis all along - I need to know to be able to deal with it (so sorry if waffling!!!)

I think loosing his dad 3 years ago ( a year before hubbies diagnosis) made us all still be in shock from that - and also just having a baby you are meant to be happy - she was also ill and in and out of hospital (nothing too serious) so we just plodded on. I think the first few months are the very very hardest its so much to take in and you are grieving for what you are going to perhaps loose and they are also coming to terms with what is wrong and that takes a long time to sink in - in a funny way it does get easier in my opinion as you know what to expect and look out for - and belive me you look out for every tiny little change in the beginning, then i learnt to relax a little and even got a part time job for a while! GOD I AM GOING ON AND ON!!!

Any way my kids now are 7 and 3 - the 7 year old has asked some very tough quesions over the last few months and now knows the complete truth in kids language what is happening - we have a brillinat support team here of nurses from the local hospice and of course the wonderful marsden. The oldest does seem to cope with things better than I do = I snap and bark most of the time at them - I find I dont have enough head space for them with everything else that is going on - the hospice did give me the most fantatstic book 'As big as it gets' by winstons wish - look at their website loads of practical tips which we have done - as well as the Macmillan book on how to tell your kids when your parents have cancer - both have helped me break it down and explain to both of mine what is happening the best way I can. My oldest when I told her said so when dad dies can we spend all his money!!!! I was sooooo shocked but apparently this is completey normal and their way of dealing with it! VERY ODD IF YOU ASK ME!

Any way this post is so huge but has helped me to put it all down - now perhaps I feel able to post again and help others I have hit the wall recently and not been able to post helpfully!

If there is anything else you want to know please please feel free to ask = we all answer honestly although it maybe hard to read, I wish you all the best and try to stay strong - its hard I know but if us loved ones dont stay strong what have they got??

To gayle, lesley, ch, joan, etc etc much love and hugs

emma xxxx

hi all
Julie, I just wanted to say that I can really identify with so much you said. My hubby was diagnosed with GBM at Christmas 2007 so we are a year further down the line. don't pay too much attention to the stats, many people have good long periods of wellbeing after treatment, though the radiotherapy can take its toll and cause tiredness etc several weeks after its finished. we too have a young son who's nearly 12 now, also two older kids. like Gayle I found the mac books helpful but they are hard to read its such and emotional subject, it took me a few days to read the 20 pages or so as I had to keep stopping as I was too upset! We also talked to Dr Friedman at Dukes in the early stages, but in the end my hubby was too unwell to go and it proved too much of a challenge. to get on their vaccine programme we were told it would need to be within 20 days of the end of radiotherapy, you might want to check that out if you are serious about going. it's a big decision though.
hi Gayle and everyone else, Izzy - hope you are ok, it's been such a worry for you lately, hope hubby is recovering and you get him home to your lovely log fire soon!
love diane xx

hi again Gayle - did you know there is a trial of a new medication going at the Beatson - its' for patients at recurrence - might be worth asking about it next time. It not for us as my hubby is really too ill and disabled now. Mairi would know about it if you ask her
Diane xx

Hi everyone

Diane, thanks for letting me know about the new trial at that beatson, any idea what it is?? I will call Mairi later, but I dont like calling too much as I know she is really busy, hope things are a little better for you.

Lesley, the sleeping tabs are excellent, when I take them I get a greatnights sleep, you should maybe ask your gp for some just with all the stress of the scan thats when I really need them, not going to the gym today, only going twie a week as I feel thats long enough to leave Martin, he really frets if I go out.

Emma, hope things have settled your end and the kids and mathew are feeling better.

Joan, hope your enjoying your wee break.

Carrie, hope your feeling better is your husband home yet.

Izzy, how is your husband is he home with you yet.

Karen, how is your mum and you not heard from you in a while.

Julie, hope you are getting the support you need from here

Thinking of you all

love Gayle xxx

Hello everyone,
I would just like to say it is really lovely speaking to you all, I felt so alone until I joined beacause I didnt know anybody who had this awful illness or had suffered it and when I read all your posts it seems that all the side effects are just like Stephens.

Emma Have I got this right that Matthew is starting a new trial, is it in this country??? and most importantly how is he doing on it???
How are you, are you sleeping better yet, I hope you are it is difficult enough dealing with this when you are on top form, it must be unbearable when you get very tired, I have been very lucky with Stephen he seems to sleep quite well at night its just during the day when he struggles.

Lesley thank you so much for your support. how is your dad doing today, you must really have your work cut out with having a young baby too, congratulations by the way and have you got a boy or girl and arent they just adorable at that age????

Daisycat I would also really like to thank you for your support. How is your hubbie today sorry I didnt get his name I need to go onto your profile.
Stephens mum had been speaking to Dr Friedman and he told us yesterday we had now to wait for Stephen to finish is RT and chemo then we have to send him the next and previous scans but he did tell her he could definately help him but its just the waiting.

Carrie thank you so much for your support, how is B today I hope feeling a bit better, I find with Stephen he is just tired all the time and his mobility is very limited, he doesnt walk he drags himself and also his right arm has been very badly affected he gets lots of seizures in it and it leaves it very very week, he is on Epilim but I dont think it is helping that much.

Hello again Gayle, how are you both today. Are you stiff yet from the gym, I bet you are, it always cripples me for the first few days.
I do agree with you as well it is a very difficult decision on going to America and also I know this seems really bad but obviously the cost involved I do believe it is thousands and thousands, I am currently fund raising for Stephen which maybe will help towards it and we have also been told that any medication that he cant get in UK, if he has to go abroad for it the NHS will fund some of it, we are looking into this at moment.


Thank you all again for all your kind words and support.
Speak soon and all take care
Julie xxxxxxxxx