Glioblastoma Why Why Why <br/>

FormerMember over 16 years ago

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Glioblastoma

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.

FormerMember over 15 years ago

Hi Laura - I know how you feel running around after a 7m old! My boy is almost 10 months old and it's exhausting. I can't imagine having to cope with what you are going through too. Big hugs. At least those little bundles bring a smile to our faces and can make us laugh even in hard times. I guess I come from the other direction when it comes to supplements in that I don't feel that they will make a difference! It's good to have different opinions though and then make your own mind up. Eating a healthy balanced diet should give you all you need but do look into it yourself to decide.

Gayle sounds like you and Emma had a wild time! I don't think my body would know what had hit it if I drank that much! A good release at the time but I imagine you're both feeling pretty rough! Glad you had fun and met up.

Sallye - great your mum's RT is coming to an end. Even just traveling in each day is tiring I think. It must be so hard that you can't see her whenever you like. I asked the exact same question re:tiredness when my dad's RT ended. It really seems to vary between people as with everything with gbm. In our case my Dad finished RT 8 weeks ago and is still spending all day in bed and not walking anywhere when he's out as he's so exhausted. I'm hoping it improves soon as it's hard to enjoy life and make the most of your time when days are like that. Did all her sickness clear up?

Julie I'm so sorry to hear your news. It must be so awful to hear news like that after scan. They must have hope though if they're offering further surgery. Do you have a date for the op?

Christie glad your scan looked good. You're doing great : ) xxx

Thinking of everyone else too xxx

FormerMember over 15 years ago

Julie I just read your profile again. I hadn't realised this was the first scan post RT. What a shock and a worry for you. It sounds like Stephen is exactly 1 month ahead of my Dad with all this. His scan is June 8th and I will be with him for his appointment. I really feel for you but do think he has age on his side as well as the fact he is being offered surgery & wafers. Do you mind me asking if you had any indication from how he was doing beforehand that the scan might not be good? (I'm sorry if I have missed this, I have been away so missed some posts)

HUGE hugs xxx

FormerMember over 15 years ago

Hello ladies,

Not much to report from down here in the drizzly Midlands but just wanted to send a cyber hug to all those who are struggling through bad times at the moment. Laura, we've all been though the same turmoil and fear that you are experiencing just now but keep your chin up! You will find strength and courage to get through and there will still be happy times ahead for you. This time last year I was in such a state watching my husband deteriorate every day but he has completed the full treatment regime and at the moment he is so much better than he was a year ago. I try not to think too much about the eventual outcome and to follow the advice I have been given by so many helpful people I met through this site to take each day as it comes and make the most of the good days.

Gayle and Emma, what can I say? 5 bottles of wine? My goodness! I'd be on my back with the whirling pits and the mother of all hangovers! It's great to see that you had such a good time though.

Love to everyone,

Susan
xxxx

FormerMember over 15 years ago

Hi Julie

Don't lose heart my daughters (15yr) brain tumour had grown back after two craniotomy's and after radiotherapy and temozolomide- it was at the first scan post RT when it was evident that the tumour had grown again- she had no new symptoms, she underwent a third craniotomy and resection with gliadle wafers placed into the bed of the tumour- She had a stroke which was severe at the time- dense hemiplegia, no sitting balance and speech affected but now three months later she is walking again, her speech is normal and she is only left with a left sided weakness- At the time of the stroke they put up a nor- adrenaline infusion to increase the pressures to increase blood supply to the area. She had a further scan after two months and the tumour has not progressed,so the gliadle wafers have held it at bay for now. There are further things planned if the BT returns including some experimental stuff like injecting a vaccine. I have also looked into a drug called ceropro and the consultant seems to be quite open to discussions regarding novel treatments. I hope the surgery goes as planned and I know it will be a stressful time for you all. Take care. Love Dianne J.

FormerMember over 15 years ago

Thank you Joan for all that info, I have looked at that website and ordered a few bits and pieces. I know that no suplement is going to send this thing packing but if they help to keep him as happy and as healthy as possible we're game. After I reeled off the long list of them we both laughed and said we'd be able to hear him before we see him with all those pills rattling around inside!

X

FormerMember over 15 years ago

Daisycat said:

Hello all
well, I 'm still here, nearly a week on. Things just don't seem real and its been so busy with all the paperwork, appointments, things to do, phone never stops ( I should be grateful,would be worse if no-one phoned). my fridge is overflowing with food brought by others, my cupboard is heaving with cakes, just can't sit still - was doing my ironing at 7.30am this morning - a first for me! I guess this is normal for now, but i feel I need time to sit still and be on my own and it just can't happen till everything is sorted. I feel an overwhelming need to have every reminder of illness removed from the house, so that I can have things as they were before hubby got ill, and remember those times rather than the more recent bad times. so I have put out all the clothes I bought him when he was ill for charity, but haven't touched the rest, if that makes sense.
the kids are coping amazingly well so far, back at school, older two in the middle of exams. they are looking after me just as much as I them.
We have arranged the funeral for 20th May - the minister who married us will do the service, I know that's hard but it will be far more personal than someone we don't know.

sorry not to "speak" personally to everyone, but just wanted to say to Becca that I know how hard it is, I have been where you are - please don't worry about things you can't change, its not worth it. Your dad will be comfortable with the syringe driver. I am certain my hubby had no pain in his last days. You are doing all you can, just being there together as a family, that's all you can do. my thoughts are with you.

love to everyone

diane

Post 15616 posted on 12 May 2009 at 22:43:19

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FormerMember over 15 years ago

hi gayle, how did that happen?! that was the post i did yesterday on wtbt.

went to the jobcentre in Paisley today to sort out the bereavement benefits and hand in the green form- what a god-awful depressing place, hope I never have to go back there. so many stressed people! I was waiting in a wee side area with 3 others and a security guard - one of the others was complaining loudly with liberal use of the f-word about how long she had to wait and banging on the window for attention, eventually I had a wee cry, couldn't help it, and no-one even seemed to notice or bothered to ask if I was ok. But the lady I spoke to eventually was very nice and helpful.
hope everyone is ok
diane xx

FormerMember over 15 years ago

Evening everyone

Diane, I hope you dont mind be pasting your post, so that the ladies can read how you and your family are we are all thinking of you at this sad time. xxx

Sallye, I must apolgise for not replying to you last night, your post slipped my eyes last night re RT, everyone is so different, in our case Martin was not tired going through the RT but a few weeks after it all finished it caught up with him and he slept sometimes 18 hours a day, hopefully this helps you.

Peter, hello to you also sorry that you find yourself here, you will get lots of support here.

Laura, I cant add anything else to Joans helpful advice, other than manuka honey simply fantastic again advice given by Joan.

Joan, what can I say your advice is fantastic as per usual, hope that you are all well. xxx

Emma, hope you are feelng better hun, I certainly dont!!! Well done the boys for getting to Inverness, one more day and they will be heading home for a well deserved rest. love to you and the girls. xxx

Lorraine, hope your mum is doing better and those anti-biotics are starting to kick in and that you dad Scott and yourself are well, and also that your first day back at work was good. xxx

Lesley, hope those knees have heeled after your skating, you must have had 2 bottles of red to do that one LOL!!! Hope your dad continues to get better. xxx

Becca, Thinking of you and your lovely family at this sad time. xxx

Susan, hope that you are both well, is the balloon ride going to go ahead on friday, I hope so. xx

Julie, hope Stephen has improved and getting ready for his op. xx

Carrie and Jay, hope you are both enjoying those new cars, the weather is certainly right for getting those roofs down. xxx

Rona, hope things are ok in NZ and that your dad is doing well. xx

anyone I have missed out please forgive me, I am still feeling so much under the weather after Emma and I 's night out LOL, but worth it.

love

Gayle xxx

FormerMember over 15 years ago

Ooh manuka honey Gayle - that is one I do like! I brought my Dad a jar back last time I was over. Well I am in NZ after all!

I'm just booking my flights and will be with my Dad for most of June. I can't wait to see him. I'll be there on fathers day too.....

I am one of these rubbish people who has a driving license but never drives! Very embarrassing I know. I now have a good motivation to get practicing though as my Dad can't get out without someone driving him so I am going to get some confidence driving here and then be able to take him places next month which will be lovely. It must be boring for him stuck in the house so much.

Anyway take care everyone xxx

FormerMember over 15 years ago

Hello all, I just popped because I saw a happened to see a new thread where someone called Dlftiyclft is asking about mistletoe therapy so I immediately thought of you Joan!
I hope it's OK that I put a note on their thread that you post here and are very knowledgeable. xx

Hope everyone is as well as possible.

Love.
CHxx

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Glioblastoma Why Why Why <br/>

Daisycat said: