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 16 years ago

Hello Everyone,

I am so sorry it has been a while since I last posted. I have scanned through as much as my brain can manage and I want to send Emma and Carrie all my love, support and strength. You have been so very brave and done so much I hope that you can take on as much support as you need right now, my thoughts are with you.

I have been away for a while as I took the girls to the seaside to re group and to rest.

No two days are the same and my feelings change all the time, being a therapist has made me aware of the processes and encouraged me to take support and therapy but it really is a crazy and bizarre reality.

My little advice for you lovely ladies for what it's worth is
Distract yourself when you need to and grieve in bits, for me it comes in waves, anything can trigger me or feel like a kick in the guts.
Keep note of the support offered, you might not want it today but who knows, tomorrow.
Do it your way, others will understand.
Be with others and be alone as you need
Carry a crystal heart in your pocket (mine is rose quartz) it holds heat and is good to stroke, touch or hold when things get hard.. to remember good times.
pictures... friends and memories hold them close
Eat when you can and whatever you need, let people feed you, if you can.
sleep.. if you can....... however you can (i have just moved back into my bed 4 weeks later)
talk whenever you need
be aware people may say strange things don't let it sit too deep, it's so very hard to know what to say to us...

I miss Jon and think of him, talk of him and to him lots and lots, I am starting to lay the first building blocks of me and where I will go and what I will do next.

Going to take the girls to Florida in May, they have been through so much, it will be just us and will give me the chance to give them more of me. Then a large group of us will do the 3 peaks later this year........

Yes it will hurt when I am there and how I will miss him being there but everything does a little, so why not go,

Jon is there where ever I go and whatever I do.. always and forever.

To all you ladies walking this journey and caring for your loved one I send you strength and positive thoughts wherever you are right now, hold friends close and keeping loving and sharing all you can.

Brave and wonderful people thank you for still being here even when I had to drift for a while, love to you all... thanks for the personal messages.

love to Julie, Debbie, Lesley, Gayle, Dianne, Becca, Rona, Izzy, Christie, Reland, Sue, CH

Much love

Jay xxxxx

My best friend sent the following in card

Love Lost, Nothing can describe this feeling of empty, No one can replace the loss, Life stretches ahead - so lonely - and with no respite

Yet I know time will heal

When is the day to allow - those who love you To comfort - to share - to be there for you

Maybe tomorrow.

FormerMember over 16 years ago

To Yellowsunshine, I just read your post and was really touched by it. My husband was diagnosed January 22, 2009 with a GBM stage 4 . Our lives have been torn apart. I grieve for my husband, our 2 teenage children and myself. I read your advice and it really hit home with me. Thank you, Jan

FormerMember over 16 years ago

hi Debbie, sorry to hear your dad still has his chest infection. it must be so hard having to stay away but believe me would be worse if he got shingles - my hubby did during chemo and was in hospital for 2 weeks with it,it affected his eye. He had to stop chemo after that for a while. he wasn't even in contact with chickenpox or anyone with shingles, it was jsut that his immune system was run down with the treatment which made him more prone to it.
hi Jay, your post was lovely, thank you for letting us know how you are. You are right , the love you shared will always be there, wherever you are, even and perhaps especially, at the top of the three peaks! It was good you got away and are planning another holiday, that will be good for all of you. maybe we don't realise till after just how much it takes out of us. last week I took my 3 kids for sushi at lunchtime when the carer was in with hubby, and it felt good to be there as a family even without hubby - I can't recall the last time we all went out together, its so easy to neglect these things when trying to cope with the enormity of BT which is just so overwhelming at times.
hi lvmykids, sorry you too are affected by this evil illness like most of us here, we know how you are feeling right now. I too have teenage children. You're very welcome to stick with us here, it really does help to post and to feel you're not alone with it, to support others and in turn to feel the support of others who are the only ones who can really know what it feels like.
love to all
diane xx

FormerMember over 16 years ago

Hi Everyone
I still havent had time to catch up on what is happening on here. I have friends staying with me until Saturday which is nice but still hasnt given me the chance to be on my own and let rip to be honest!

Friday was pouring with rain but at 10.30 it stopped - his friends carried him into the church to So Amazing by Luther Vandross - our first dance at our wedding, the immediate family walked in behind him.

The church was packed - people standing everywhere - the vicar thinks 400 people were there. My dad read out the tribute fantastically ow he held it I will never know - then a couple of his friends said something & read a poem - he left the church to 3 little birds by bob marley (dont worry about a thing) we then took Matthew on a last ride through the village where we and he have lived all our lives, the funeral directors walked in front of the car through the high street and the shop keepers all came out - what a site that was. We then went on to the crematorium where he went into sade your love is king - they had to put speakers up outside as there was so many people. We left to Mr loveman by shaba ranks - it did raise a couple of big smiles. Then back to the local yacht club where we had our wedding reception - it was packed and lots of happy memories discussed along with plenty of alcohol! At 5pm I came home and all his mates went to the pub - a few friends came back here and we sat up drinking and chatting till 3am - hence the huge hangover yesterday! - The whole day was just so Matthew and I think he would of been very proud of us all - I was so proud of him thats for sure - all those people what a tribute to an amazing man.

I am still so raw and can say it hasnt hit me really yet - i guess when the kids go back to school in a week it will.

Thank you all for your love and support over the last few weeks - cant believe its nearly 2 weeks now - you are all amazing people doing an amazing job - keep strong all of you -

xx

FormerMember over 16 years ago

Dear Emma
What a fantastic tribute to a man who was obviously so well loved by family and friends. Even the sun shone for you both - I salute your courage and the love that you shared.
May the sun continue to shine on you and your family - even in the darkest moments.
Thinking of you
Sue x

FormerMember over 16 years ago

hello. Again just sending my love to everyone and i am so sorry to hear the news for some people BIGGEST LOVE EVER COMING YOUR WAY. i hope you are ok and manging well.
x x x x x x x x x x x x x x

just if people wanted to know things are going quite well for me at the moment been getting back to work with my dad and im off to alton towers on tuesday withsome friends for 2 days, staying int he splash landings hotel. also i got a phone call from the 'willow foundation' which does special days for people and makes your wishes come true, my wish was to meet the comedian Michael Mcintyre and i am WOOOOOOOOOOOO on the 7th of may i am watching his warm up tour for his tour in september then he said i can see him after too SO HAPPY AND EXCITED :D

sending my love to everyone and keep spirits high :) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

FormerMember over 16 years ago

Hello to all my dear friends

Just not long got home from our caravan, Martin has been up since 3.15 this morning and he has never stopped I dont know where he gets all his energy, he makes me tired just watching him, he has not even had a little nap since then, he said he enjoyed being at the caravan so much and cant wait to go back, next weekend!!!

Anyway folks I have caught up with all your news, this is one of the saddest catch ups ever, I can hardly type for the tears, Carrie and Emma, you both did your husbands proud, it must have been so difficult for you two wonderfull ladies although through the tears you both made me smile (((((bighugs)))) to you both and to all your families.

Jay, so nice to hear from you again your post has made me cry, please keep posting your words are lovely.

Diane, a wee paddle in the west coast maybe, its been a long time since the weather has been warm enough for a swim here lol.

Lesley, Lorraine, Becca, Debbie, Julie, Joan, Sue, Christie, Rona, CH and everyone send you all love, must go just now and wipe my tears away.

love Gayle xxx

FormerMember over 16 years ago

hi Gayle, welcome back, hope you enjoyed your wee paddle! hope you get a better sleep tonihgt - must be all that fresh air. bet Martine loved the caravan - its such fun for kids and so healthy - when we had ours the kids would be out playing in the park all day long.

hi Emma, your description of Matthew's funeral was very moving. I can only imagine how special it must have been to be there. 400 people is just wonderful, and must have been a real comfort to you. Glad you have friends around to support you.
hi Christie, glad you are doing well, you keep on fighting! hope you have a great time at Alton towers, you just let everyone else treat you to whatever you want!
love, Diane xx

FormerMember over 16 years ago

Hi folks from a lovely sunny Fife in Scotland today.

Well things my end pretty crap really Mum so tired all the time and can do nothing now for herself I went in tonite after work and my Dad sitting on Mum's commode (seat on) feeding her tea, his still in the oven, like Becca said about her Mum I am in awe of my Dad he is just amazing and I wish I could do something back in return for him, well I try to, Scott and I go every night to help out and a few times we have let him gone fishing but I think as he knows Mum is harder now to handle due to mobility etc he does not want to leave us in charge! I felt rather down at the weekend and very bitter which is not like me at all, my neighbout downstairs who is an old friend of Mum's, yesterday I said morning and she just blanked me so I got all upset and said to Scott I don't know why I bother and the front door was open and loudly I said and you know what she does not even ask how Mum is, I said as I wanted her to hear me and you know that is bad and not like me at all, next time I think I will just confront her and say don't you want to say hello or something I am just always so pleasant to everyone and I feel like saying if only she knew what I was going thru its like when I have problems at work I feel like wanting to shout and say your f'in lucky I am here alot of folk would be off with what I am going thru the now but thats not me and not in my nature sorry for the rant folks feel better now!!

Gayle - Glad you enjoyed your caravan break, try not to worry too much about next week easier said than done I know but your Martin seems to be doing well, you must be very proud of him, text you soon love to 3 of you.

Lesley - How is things your end my friend, how is your lovely Pop doing now? Are you back home yet in that new kitchen?

Becca - Sorry to hear about your Dad my Mum's leg swells up to and we find now that she sleeps more and we put a pillow under her feet and also when she on her recliner we recline her back it has helped her slippers (velcro ones) could not fasten and now they do, I think we will both feel the same even though opposite parents going thru but my heart bleeds for my Dad as much as my Mum when I see what he does, good luck for tomorrow sure your work will understand, my office has been amazing with me and I hope they will be as the weeks/months continue.

Diane - How is things your way? this illness so very hard to deal with but your doing amazing, hope weather nice on the West it is on the East today.

Christie, enjoy your trip at Alton Towers, we were there in Sept last year, it was good but I am a bit of a scardy on the rides but I went on a few.

Carrie, Emma and Jay your posts touched my heart, they really did, a big hug for 3 amazing people.

Well I am off for my dinner before another trip to start my second job of an auxiliary nurse/carer, I don't know where I get the strength from but like you all I do, off on holiday 1st May - 13th May not going away just can't but will be nice to help out more, will be sad too as it will be 2 years since it all started to go wrong, and I can't help but think back as I just can't think of the future cause to me a future without my Mum seems so pointless, until the next time take care everyone.

Lorraine xx

FormerMember over 16 years ago

Evening all.

Hope you are all as well as you can be, we had the gp out today as Martins ankles and leg has swollen again, our gp spent almost an hour in our house checking over, she is happy that it is not a clot, Martin has to keep it elevated and we have special socks to get from the chemist tomorrow, hopefully they will work.

Emma, hugs to you and the girls, thinking of you all. xxx

Carrie, hugs to you thinking of you. xxx

Jay, hugs to you too. xxx

Lorrain, sorry to hear that you are going through such a difficult time too, your dad is doing an amazing job, it must be so difficult for him, you and Scott too, still working full time and being there everynight, big hugs to you all. xxx

Becca, hope things improve for you to love be thinking of you all. xxx

Diane, hope things are a little easier for you, did not realise you are going through such a tough time to big hugs. xxx ps Martine loves the caravan, she is out all day playing with her friends getting lots of fresh air.

Lesley, glad you had a great night last night you deserve it, shame you didnt get a message, hope your dad is feling better. xxx

Debbie, hope your dad gets over the chest infection, Martin had one recently 2 courses of strong anti-biotics sorted it. xxx

Sue, Rona, Christie, Joan, CH, Julie, Reland, Suzanne, Izzy love to you all and anyone else I have missed out.

love Gayle xxx

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