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.
Hello everyone. Well I am back here looking for some answers from you wonderful people. I don't know how some of you are able to cope with your situations and also offer so much support to others, you are amazing and thank goodness people like you exist in this world. My life is in a bit of an upheavel once again. My husband was supposed to start his 3rd round of 5 days temadol, 23 days off but we didn't quite make it. Last Thursday he was admitted back into hospital after another seizure and they did a ct scan and told me that the tumour has grown back and it is bigger this time. The doctor has taken me aside and told me that in his honest opinion he feels that they will not operate on my husband again and they will probably stop all treatment. When he was admitted this time they gave him a huge dose of anti seizure medication and right now he is having a blood transfusion because they overdosed him on it. I am feeling exhausted and yet very numb, kindof like my emotions have all switched off. I am just feeling nothing, empty, nothing. Ok here comes the question, can anybody help me. I know this type of tumour is very aggressive, what's going to happen now? I know everybody's different but I need to know how much time my husband is likely to have left, how quickly are things likely to progress from here? I am so sick of hearing from the hospital, everbody's different so we can't really tell you. Can anybody help me please?
Hi Daisie - unfortunately (or perhaps luckily), everyone is different. One website i found very useful was called 'brain hospice'. When you feel ready, it can be useful in giving you signs to show how things are progressing. It helped me when my husband was near the end. As hard as it was, I felt I needed to know what to look out for. Sorry you find yourself having to deal with this awful situation, when the one person you always shared things with is the one person you now can't discuss them with. Best wishes Carrie x
GOOD NEWS! H has had her scan today and no new growth so a sigh of relief for now! I feel that the gliadle wafers have held things at bay. There were some discussions of future treatment - immunotherapy a consultant in Belgium is undertaking this work. We feel relieved but does any one else feel like me its a wonderful moment when your told no deterioration then after a few hours the euphoria wares off? others dont understand the impact. Any way nice to share some good news. Love to all DianneJXX
Just back from Hospice where Dad has been for past 5 days........................said goodbye as sadly he passed away at 2.30 this morning... Mum felt an overwhelming need to tell him she loved him and it was ok to go now and as she stroked his hair and told him he just slowly stopped breathing.........................I am so thankful that finaly this painful 9mth journey he endured and hated is over for him..
I must say the Hospice was such a wonderful place to be shring our last days together......he was very distressed and confused on friday but we had two beautiful days at the weekend when he was totally coherent,back to his self talikg to all of his family and friends almost saying goodbye to us all...............................................................this has beenthe worst experience of my life to date!! The care system we have been involved in needs some attention so in true Roger fighting style I intend to highlight these areas and try to change certain aspects for those families involved in the future.
Take care all cherish every moment the good the bad and the ugly. Debbie
Debbie, So sorry to hear about your Dad. Please accept my condolences. Good though that you had excellent support from the hospice and that your Mum could be with him. There are indeed a lot of improvements needed but go easy on yourself too. Love, CHxx
DianneJ - It's really good to hear some good news for a change. I'm a bit like you though when the euphoria wares off, it's back to worry about what might happen next. Debbie - So sorry to hear of your loss, my thoughts and love are with you at this sad time.
Debbie, so sorry to hear of your dad passing - another sad loss to this mindless disease. Much love and strength to you and your family xxx
Lorraine - Hope today went as well as could possibly be my friend. Im sure you done your mum proud, Thinking of you all. x
Gayle - Hope Martin is continuing to improve and okay being off the dex...enjoy the hols at the caravan..ching ching! x
Diane - wonderful news about your daughter although I do understand what you mean - when the happiness from the good news wears off your brought back down to earth with a bump, having to remember the situation we find ourselves in in the first place - you'll have to remind us when the programme is on this month - i, along with everyone else will be watching im sure. x
Carrie - great to hear from you - your astounding the way you remember everyone!- yes, all home improvements finished thankfully - dont want to see another workman for a long time to come! have a lovely converted garage that my mum and dad have managed to stay in a few times now so all worth it. take carex
Daisie - As Carrie says, the brainhospice.com site is the site that will tell you how it really is...it makes for harsh reading but i had find out all the worse case scenarios at the beginning of my dad's diagnosis and this site tells you just that. I could hardly beleive what i was reading initially and that these things would ever happen. It so true though, even though a lot of cases follow a similar pattern, no two people are exactly the same. take care x
Rona - not long till you move back is it, I imagine you'll be so looking foward to it...peace of mind being able to be near your dad. I take my hat off to you taking your bubba on a plane....were going on holiday tomorrow and Im dreading the 3 hour flight with Joe already...he's a wee rogue who wont sit still for a second! x
Well my dad got out of hospital on Monday after catching our sickness bug...he was very distressed, agitated and aggressive in hospital but now he's home he's settled down. His speech is getting worse and hardly says anything nowadays...i think he finds it very difficult now to formulate sentences so finds it easier not to bother. Its so sad. Me and Paul have decided to take the kids on holidays.....a bit escapism..I wasnt sure about going but my mum was adamant we take Amber and Joe to have some fun. I know where my mind will be but this might give me a bit time to try and recharge for whatever is coming next - were only a 3 hour flight away too.
So adios to you all - wishing you and all your loved ones a peaceful time. take care Lesley xxxx
Love to everyone else out there - thinking of you all. xxx
Debbie, so sorry to hear your news. Glad you were able to share those final moments, i'm sure in future you'll remember that time as a good thing. hope you can find some peace now.
Dianne J, great news about h's scan. I do know what you mean about feeling deflated afterwards, I think its just as we are always on that rollercoaster experiencing all the different emotions, its draining overall as you feel you constantly have to be on guard and be fighting it all the time.
lorraine, hope today went as well as it could - I'm sure you will have done your mum proud.
I just wanted to let folks know that I won't be around on the thread for a few weeks as I'm supposed to be goign on holiday on 5th for a couple of weeks. However my dad is now quite ill in hospital so don't know if we'll go, but if we don't I'll be busy visiting him and trying ot cope with all of that, supporting my mum too, so less likely to have time to be on here.
take care everyone and look after yourselves! Diane xx
Debbie, so sorry to read about your lovely dad, thinking of you and your family at this sad time fore you. xxx
Lorraine, glad everything went well for your dear mum today, I am so sure you all done her proud, lots of love. xxxx
Dianne, great to hear some great news well done Hannah. xxx
Lesley, sorry to hear your dads not so great, glad your managing to get away with Paul and the kids where are you guys off to? Been very good lately sticking to some wine on a saturday and dry the rest of the week and feel good for it. xxx
Carrie, lovely to hear from you you are doing so well, your posts and concern for everyone else tugs at my heart. xxx
Jay, glad you and the kids had a nice holiday, your words made me cry, Jon will one day come back for you and you will be reunited, that thought shall keep you going until that day. xxx
Sallye and Christie, hope you both enjoyed Glastonbury. xxx
Rona, glad you got home safely, bet you cant wait to get back over for good. xxx
Diane, hope you and the kids are well, when do you go on holiday now. xxx
Emma, love to you and the girls. xxx
Becca, hope you had a nice holiday, hope Martins eyes didnt wander too much. xxx
Daisy, the girls have gave you good info cant really top that sorry to read your sad news. xxx
Martin, great results for your kids, love to you and Becky xxx
Grantsnana, Eileen, Joan and everyone else lots of love to you all.
only home for 1 night have got a big meeting tomorrow, shall tell you all another time. Martin been very sore and his leg infection has gotten alot worse his ankles are very sore, and he has not eaten much for nearly a month now, got an appt yesterday to see prof Rampling he is not too concerned said it s all normal, pain and sickness is just a side effect of coming off the dex, not so good but at least put my mind at rest, take care everyone speak soon.
Gayle - were off to sunny Benidorm...for 9 days..only booked it last saturday so its been manic trying to get us all organised!...wonder if were doing the right thing and i know i'll worry but will just be good to see the kids enjoy themselves. Good to hear Martin is still off the dex, even though it comes with its own set of problems, fingers crossed for tomorrow. Speak when im back! take care xx
