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 all,
to everyone reading this post I send my upmost respect and hope to you all, as this is a torturous journey for everyone involved and you all need ,support courage and hope.

Lesley,just a quick post as im still grieving quite spontaneousl at the moment and liable to blow up the laptop!!.. If at all possible try and get a refferal to your local hospice as they are really amazing places full of peace and understanding.They were wonderful to my dad and made his last few days very comfortable as he had suffered for over a week in severe pain.The hospice was a haven for us all and I will always be thanful for the respect and fantastc care he recieved.I hope you can get through this truly horrific part of the BT journey as it is soul destroying to see your dad deteriorate my heart is with you lesley stay strong petal!!!

Love Debbiexxxx
Ps dads funerallast thursday was amazing so many people arrived that they had to stand outside maybe we should have hired oit wembley stadium!!We played his favourite songs and remebered what an amazing gift had been to us all....I hope hes playing golf on the best course ever!!!!!

FormerMember over 15 years ago

Debbie thank you for those thoughtful words for us all. You're right we do all need courage, support & hope. I hope you are ok. It sounds like you gave your Dad a fantastic send off, must have been emotional to see all those people there for him

Lesley glad you had a nice holiday but very sorry to hear about your Dad not doing well. So difficult. I agree the hospice is a great place to make contact with. My Dad is getting so much support from them already and he's not as unwell as your dad. They are great places often with special people working there.

Dianne I know Gayle had a good place for holiday insurance but I've no idea what it was sorry. Hopefully she'll be on again soon and can let you know.

Laura it must be fun planning the wedding. Fingers crossed for that scan. When is the wedding? My boy has actually been great on the planes so far. He often sleeps on them (usually in our arms). It's probably a bit different with it being such long flights he is usually tired. He'll be 13 months next time so see how it is then. We just let him crawl in the airports to get rid of some crawling energy. Good luck. It'll be worth it to have a holiday.

Sallye I really feel for you with the thoughts you are struggling with about your mum. I can understand a bit of how you feel but my Dad has been nowhere near as badly affected my the tmz. It must be such a worry for her (and you all) when she knows she has to take it again. I can understand her feeling of wanting to do it no matter what as the alternative is probably scary. In some ways it's good that she tries to be positive even though she knows the outlook. My Dad is the opposite and is getting depressed and terrified. So hard to see our loved ones going through this and there is nothing we can do to take it away. If the effects of the treatment are too awful she should discuss with her consultant and see what his opinion is. It does have to be a balance of quantity and quality of life for sure and the treatment she has had so far will have made a significant difference already I think.

Thinking of you all xxx

FormerMember over 15 years ago

The BBC Lifeline are highlighting Brain Tumours with the Samantha Dickson Brain Tumour Trust appeal on Sunday August 2nd between 5-6 pm. I hope it goes well as they edit a great deal of the filming- I wanted to get over to people that there is a lack of research into this area and that may explain the poor prognosis for people. H has contacted Cancer Research UK re the fact that only 1% of their funding goes into investigating BT. Their response was that there are over 200 cancers and they must sheare the funding 'fairly' .They need to look at the morbidity and mortality in the equation- she has written a reply!
Thanks for all your tips on insurance.
Love DianneJxx

FormerMember over 15 years ago

Hi,

Dianne - Gayle gave me the company name and number when she e-mailed me a few months ago, unfortunatley we never got to use it but i hope you do! Have copied below

B x

Hi Becca the number is 01689859102 is the number of MIA you will speak to Cathy or Jackie they are really helpful we got our insurance up and running in 10 mins, no docs letters or faxes only we had to confirm our consultant knew we were going and it was on Martins records, good luck, hope you are all well.

love Gayle xxx

FormerMember over 15 years ago

Hi everyone

Just a flying visit from me, we are still over at our caravan spending the summer, I am missing all of you very much, we are only coming home once a week to check mail etc, another 4 weeks to go then back to normal everyday postings, I hope that all of you are as well as can be, we are ok Martin is now back on a low dosage of dex as blood tests showed his adreniline glands were not working properly due to long term usage of dex, prf Rampling is still quite opptomistic that Martin shall get off them again, he is eating alot better now and is not quite as sore as he was but still in a lot of pain. Also on tuesday of this week we went for a scan results on the 27th praying every night and keeping fingers crossed.

Dianne, Call the number Becca gave you they did insurance for Martin for £50 for a week in benidorm, no hassle with them at all, they were fantastic, I cannot recommend them highly enough. Hope all is well with you Hannah and the rest of the family. xxxx

Rona, what a difficult time for you and being so far away, roll on august for you. xxx

Lorraine, thank you very much for the lovely card, it is very much appreciated, love to you Scott, your dad and wee Sandy hope you bring him down to Ayr. xxx

Lesley, hope you had a lovely holiday with the family, just saw Duran duran on the news wish I was going tonight enjoy my friend. xxx

To all my other friends take care speak to you all soon.

love Gayle. xxxx

FormerMember over 15 years ago

Hi all,

Debbie & Rona - thanks you two ladies on the hospice comments...well, my dad was admitted on Thursday afternoon to Edin's St Columbas Hospice, at the moment it is only for pain control as for weeks he has had the most horrendous back and shoulder pain so theyre trying to control this better...oromorph seems to be helping. It was so distressing when i took hiim on Thursday as he kept repeating "im not ready for this, i should be more prepared"...i think he meant he should be more prepared to die but he's not. It was bloody awful but yesterday he was nice and calm and the nurses are fantastic people...i think theyve actually took him in there to give my mum a few days rest too by the sounds of it. Thanks for your advice Debbie, especially when your going through your own terrible pain just now..i hope you, your mum and the boys are bearing up as well as can be...dont blame you for blowingup at the laptop...there are times i want to throw it out the window!! take care xxxxx

Gayle, fingers crossed for scan results, sounds like Martin is still doing well though. Went to see Duran Duran, wasnt going to as didnt have the energy but the thought of wasting £90 spurred me on! was worth it though...the lovely simon le bon was amazing as usual..even if he is 50!! enjoy teh caravan.

Thinking of you all, lorraine, becca, dianne, joan, carrie, christie, EVERYONE...have as peaceful a weekend as possible xxxxx

FormerMember over 15 years ago

I'm off on a weeks camping holiday to West Wales this morning - I am going to miss you guys loads. I don't post much but I do read at least once a day - a lurker is I think the official term. My mum was supposed to go away for 3 days last week before her next round of chemo so I couldn't go to see her, and this week I can't see her either. But when I phoned on Friday I found out that they hadn't gone as she felt too ill and once again has diarrhoea that is uncontrollable. I was so cross / upset / annoyed (not sure of exactly the right emotion) that her husband hadn't phoned me or my sister to tell us. We were at home worrying how their little holiday was going and it turned out she was at bloody home the whole time. And of course it also meant that I could have gone over one day to see her. Oh well! Onwards and upwards!

FormerMember over 15 years ago

Hi to everyone!!wishing you all a week full of love understanding and hope.......never lose the hope.

Lesley-Im so sorry that your Dad has been in such pain ,mine was exactly the same out of nowherehe began with horrific back,then shoulder then upper stomach...the hospital put him on such a huge concoction of drugs he was dillusionary!!
The Hospice were so fantastic I really hope your experience will be the same........my dad was originally sent for pain control and was due to come home with the support of the Mcmillan team,but hed had enough of the journey and it was his time to leave us and go to a better place(it must be as it only takes wonderful human beings!!)
Every moment in the hospice is cherished because it was peaceful...Dad had two days where he bounced back and spoke to all of his family and closefriends ,but then became very tired and irritable,(I found the brainhospice website after Dad had passed but it was amazing how accurate therefindings are...its about the final stages and I would only avise people to go on there if thats the information they are wanting otherwise I think it could be quite upsetting.)

I know its such a difficult place to be for everyone on this site wether you are a family member friend or survivor....try and keep strong together you all need support as the BT tries to destry everybodys resolve!!but keep hoping ...there are survivors out there .I think we should all pull together as voices for BRAIN TUMOURS especially the GBM 4type as we need to push goverment in order to plough money into tumour research......so many go unrecorded or missrecorded (at the time of death( that the statistics are an unfair representation of the facts)
Sorry Ive got my fighting hat on support to you all
Debbie

FormerMember over 15 years ago

Hi all

don't know what to say really, Dad's funeral was on Friday, was a lovely service (well lovely as this kind of thing can be), mum struggling, only wish I could take the pain away for her. Don't think it has really sunk in as yet even though I went to see him Friday morning. Find it strange that my 4 year old hasn't asked for her grandad very much (they were great friends!) maybe she has a sixth sense.

Well, want to say to everyone to take care, stay strong....

Lesley, make sure you spend as much time with your dad as possible, say everything you want to say often. I spent the week with dad before he died it was hard to sit and watch but those moments when he woke up and spoke were unmissable and I don't regret it at all.

I agree with the brainhospice.com comment, it was spot on....was upset when I read it but at least was forewarned and kind of knew what to expect.

Good luck and best wishes to everyone xxx

FormerMember over 15 years ago

just another very brief update,

start due to start his 2nd round of chemo in couple of weeks..... at the moment he seems to have stablised after the radio therapy..... he has been to the coast a few times to getaway, sadly due to the blood clot he cannot fly anywhere .

one very strange thing , he was diagnosed with inoperable tumour in march and given an estimated 12 months, at the brain tumour conference my mum showed his scans to a professor there who said it was not inoperable....... he does not know all the details of dad i.e. he has a metal coil in his brain already from a haemorrage 12 years ago and that he is considerably overweight, but addenbrookes are going to send a copy of his file over. I am confused to know what to think, what would an operation do for him weighing it up against the risks. would it maybe give him slightly longer but at what cost to his body and mind ......

we are trying not to build our hopes up to much as at the moment nothing has changed but i guess we all hope for some sort of miracle.

Anyway my sincere condolences to all those whose loved ones have passed away since i last posted and my prayers and hopes to all those still battling on .

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