Glioblastoma Why Why Why <br/>

FormerMember over 16 years ago

1976 replies
3 subscribers
1179930 views

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

Hi all,

Laura, so sad you have had to join us, but welcome. Sorry to hear its your husband who has gbm. What a huge amount to have to cope with along with a baby. Its my dad who has gbm and I remember that awful day only too well, and the feeling that the bottom has fell out of your world. The shock is horrendous, but as Emma says, even though it wont feel like it just now, the shock will slightly subside over time and you will cope...I dont know how we do, but somehow it happens. This site has been a lifeline to me and the people on here are fantastic, everyone is dealing with their own tradgedy but always have time to help others out. Remember too, that every single case is different - I know the statistics arent the best but your hubby isnt a statistic and we have all read/heard of cases where people do well. big hugs to you. x

Emma - How fantastic are you - helping out Laura with your tremendous advice as always, you put things in a great way and always make people feel better. Totally in agreement about attitude...Matthews was in inspiration to all. Shanne my dads nurse says they didnt even expect my dad to hold up to the RT but through sheer determination he is still soldering on. Thinking of you and the girls...you've definatley smashed me at scrabble this time! x

Gayle - Fantastic fantastic fantastic! What brill news, although no surprise from Mr Karaoke himself! ...hope your getting a well deserved sleep tonight.x

Lorraine - Hope things are a bit clearer for you today pal. Seems like everyone is in agreement with you that your dad now needs more help at home. Difficult to believe it has come to this for you and it must be so difficult for your poor dad to have to agree to it all even though it sounds like he needs to. Its his wife afterall and it must upset him. I hope things improve soon. speak soon. xx
ps - ill give you a laugh, funny you should say that about shanne being Welsh...I thought she was bloody Irish for ages until she told me a few weeks ago she was actually welsh. She mustve thought i was a right div DOH!...

Becca - hi love, never managed on fb on sat....was at my sisters drinking the devil juice. Back to work in precisely one week...i work 3 full days which isnt toooo bad, 22.5 hours so i can just about cope. Part of me wants to go back to get some normality (if there is such a thing). A tad scary after being off for so long! Hope your dad is doing okay just now and you spent your weekend with them. Love to you and your mum tooxx

Love to Christie, Sally, Jo, Carrie, Eileen, Rona, Izzy ...and everyone else my tired head has forgot. xxxxxxx

FormerMember over 16 years ago

Gayle, what brilliant news! I'm so pleased for you, you must have been skipping out of the Beatson today!

Dear Laura, sorry you had to find us but as Emma and Sally have said do stick with us and ask whatever you want, someone will no doubt have an answer. My hubby too has GBM, and though he is now nearing the end of his journey, in the early days he was quite well, especially after his first operation and through the radiotherapy. he was able to travel back from some of the radiotherapy appointments independently and though he couldn't work was able to do lots in the house including cooking dinner for us every night! How do we cope - I don't know, we do because we have to and there's no choice. the weeks after diagnosis were hardest I think as you do struggle to come to terms with it - I sat up for hours at night searching the internet for information and looking for clinical trials that might offer some hope. but gradually I did come to an acceptance of how things were and was able to resume a sort of normality though of course it was not like before. I think the key just now is to make the most of the times he is well, try not to worry about every little symptom ( we all do though!) and don't assume that everything is caused by the tumour - as emma said there can be a lot of swelling around just now and during and after radiotherapy, and swelling can mimic the symptoms of the tumour itself. Steroids are good for reducing swelling so if you think there has been a change since the dose was reduced it would be worth discussing agian with the specialist as they mihgt increase the does agian. its hard as ideally you'd want to have a little steroids as possible cos of the longer term side effects, but sometimes they are a necessary evil. I really feel for you with a young baby too - not easy. Can I also suggest that you do get a mac nurse or local equivalent, even if you don't feel its necessary just now - its good to have someone you can contact with any worries. most hospitals also seem to have nurse specialists who are more accessible than the doctors and usually very clued up if you need any advice.
take care,
love,
diane xxx

FormerMember over 16 years ago

Dear Laura Lou

Echo the others - so sorry you have to find yourself here but it's a very informative place to be.

Your situation is very hard - really feel for you but don't despair - your husband's youth is on his side and like the other ladies say, it's early days - when the steroids go down it does take some adjustment and also you'll find that just when things seem particularly difficult, there'll be a sudden improvement - It's a bit of an up and down condition and your partner may soon level out - I'm sure your man is a fighter - I know my husband gets very frustrated with speech and thinking problems - he can't read or write now or do any number of small tasks BUT we've adjusted to it and we get by - i know it sounds stupid but just try and keep smiling for him and help him relax - David gets much worse with words when he's stressed and put on the spot - you'll develop strategies to get by - and make sure friends understand the situation and help him relax about this too - very best wishes to you both xx

well ladies haven't been on for a while but decided it was time to come out of my shell !

Have been reading and following the thread - Big love to all - So sorry to read of all the difficulties and hope Sallye and Lorraine that things get better for your Mums soon - Also Lesley and Becca with your Dads- hope so much things stabilise and happier times lie ahead

Emma and Carrie - Big Respect!! You two set the standard for bravery and kindness in the face of such loss .Dear Debbie and thoughtful brave Diane - thanks for your messages - you brought me out of hiding!! - Thinking of you both and Debbie, your Dad and Diane, your husband respectively - Gayle- what can i say but Whoopee - cheers - hic!!

Things here ok - yes we have regrowth etc but David fairly stable so PCV being kept in reserve for a while - Next scan May 13th and not looking forward to it - Got shown the last one done in February last week when we went to clinic - not a cheerful sight - brought home the reality BUT consultant impressed that he's somehow staying stable - (Mistletoe therapy, I reckon..!) physically he's alright and we remain in reasonable spirits and are down the woods everyday with the dogs looking at the bluebells - for that i give thanks - you got to count yer blessings

Know I'm missing some names here but knackered - don't mean to leave anyone out - Much love to all posters, old and new - Hope you'll forgive me for the recent disappearing act but think I got a bit frail for a while and just couldn't find the words -

well, anyway, much love - and a peaceful night (gayle...hic!)

Joan xxxxx

FormerMember over 15 years ago

Morning everyone

Well sleep I certainly did last night, from about to 11 to 8am and still feel tired, Martin took Martine to school so still sitting in pjs LOL, will have to get ready soon as have a dentist appt.

Laura Lou, sorry that you find yourself here, my heart goes out to you with a young baby, it is a rolloaster ride this journey, but as the ladies have already said you will adapt at the beginning it is such a shock and takes sometime to accept dont know if I fully have yet and we are nearly a year down the line, please keep posting you will get lots of much needed support here. xxx

Emma, my dear friend what can I say after everything that you have been through you are still such an inspiration to us all with your valued posts, love to you and the girls hope you managed to get a sleep last night too. xxxx

Diane, hope things are a little better for you, I know you are going through a rough time at the moment too love to you and the kids, your advice is amazing to and very much appreciated. xxx

Joan, Welcome back you have been missed so very much, sorry things are not great for you and David at the moment but its nice that your still getting out for those lovely walks, thanks for the info about manuka, I honestly believe that is part of Martin being so well, he never misses it now, love to you both. xxx

Sallye, hope things are a little better for you. xx

Lorraine, not long till your break now bet you cant wait to spend that extra time with your mum and help your dad, I hope the anti-biotics are kicking in now, GET SOME HELP!!! you all need it now. love to you all. xxx

Lesley, hope things are good for you all and your dad continues to improve, not long till you start your work now grrrr, hope you get your childcare fixed love to you all. xxx

Carrie and Jay thinking of both you incredible ladies sending you both lots of love. xxx

Eilleen,Sue, Suzanne, Rona, Debbie, Christie, Izzy and everyone else hope you are all well.

love Gayle xxx

FormerMember over 15 years ago

Hi folks

Well things are moving here spoke to Mum's mac nurse today and she coming out to see Mum and Dad tomorrow, in the meantime she has arranged for the District Nurses to come out and help with Mum's personal care before a care package is put in place, I was wondering as its social services within Fife Council they need a hospital bed in place before they do care but if we went to a private carer would they require a hospital bed?? I know some of you guys have said a hospital bed is best and if thats the case we will go with it but I don't think my Mum or Dad want that, Scott and I went thru their bedroom last nite, Mum was sleeping and Dad lay down beside her and fell asleep and they were lying holding hands - it was so nice and sad to see.

I would welcome any messages back re carer issues as I have never had to deal with this before.

Mum has just got up for a while so gonna spend some time with her so will come back to you all later know you all won't mind, take care everyone.

Lorraine xx

FormerMember over 15 years ago

Hi Lorraine

Glad to hear you are all finally getting some support and help!! long over due!! Sorry I cant help with any advice, but I am thinking of you, I agree with you about the hospital bed I love to cuddle into Martin everynight, I bet it made you happy see your mum and dad fall asleep like that, take care love.

love Gayle xxx

FormerMember over 15 years ago

Thank you for your messages, it is comforting to think there are people going through the same thing and that i can get information and support when i need it. We have had my partners oncologist appointment come through for Friday, so am strangely looking forward to finding out the ins and outs of the next step as feel after the bomb was dropped we have been left in limbo land with little info. No doubt i will be back on soon.x

FormerMember over 15 years ago

hi Lorraine
the social services might still come in and do a bed bath but it would depend on your mum's condition and they'd probably want the OT to assess her first. If she is completey bed ridden then the hospital bed is probably the only way to go I'm afraid. It will be more comfortable for your mum I think. they will probably send two carers - i found that hard to take as it felt as if they were saying I wasn't good enough to help them in the personal care but it wasn't that at all of course, its jsut that they are all trained in the moving etc and work together as a team all the time, and I couldn't ever be a substitute for that, once I saw them in action together. I found the staff were willing to continue with bed baths as long as they knew the OT assessment was pending and the carers boss person liaised with the OT. the private companies would do thier own assessment but wouldn't be taking any health and safety risks with their staff and I doubt they would do what you and scott do if it involves lifting. re the bed, would it be possible for your dad to set up a camp bed or matress beside mum's bed - the bed can be lowered down so they could still be side by side if there was enough space in the room. the beds can be put in an upstairs room as they come in bits and are assembled once in the house.
bet your holiday can't come fast enough!
love
diane

FormerMember over 15 years ago

Gayle I'm so pleased to hear your good news. That's really great. My Dad has his first scan in June so not looking forward to that.

Lorraine I hope things are getting sorted out with help for your mum & dad. I have no experience of carers I'm afraid but looks like you're getting good advice here.

Sallye I hope your mum is feeling better. Must be so hard seeing her like this but so hard too that you can't visit or talk to her whenever you like. I imagine that must be difficult to cope with.

Laura Lou I'm sorry you find yourself here but as the others have said it is an amazing thread with such great people who will help & support you through the good & bad times and try to answer any questions. My Dad has GBM and has just finished his 2nd round of temozolomide. I have a 9 month old baby. It must be so awful for you to go through this with a young baby too. Sounds lovely that you're planning to marry. I wanted to get married too as I don't want it to happen without my Dad there but I'm not sure if we'll manage. There's a lot going on for me at the moment. Have you read about the standard treatment your partner is likely to be offered? - 6 weeks of daily radiotherapy mon-fri and daily chemotherapy alongside this. The chemo is a tablet called temozolomide. Unfortunately Sallye's mum is having a very hard time with it but my Dad had coped really well with the chemo and had almost no side effects. The radiotherapy has however made him extremely tired and he has no energy. Your partner is much younger though and I think this will make a big difference. After that it's usually 5 days of the chemo tablet every month for 6 months. The steroids will probably continue for a bit. Steroids are great at controlling swelling but they do have side effects including increased appetite and weight gain. My Dad has put on a lot of weight. Thinking of you anyway. Keep posting if it helps you.

Christie you re doing so great. Thinking of you too.

Emma lovely to hear from you. It must take a long time to feel real (if ever?). You give such great advice on here and always find the right words.

My mind has gone blank and I can't remember who else I wanted to reply to! sorry. Thinking of all you amazing people xxx

My dad is still sooo tired and not doing anything much. Very hard to see. I wish he was able to enjoy life a bit more but he spends a lot of time in bed.

FormerMember over 15 years ago

Hello :-D

sallye sorry i know this is a late reply but i thought it may help if the argument is still playing on your mind, my mum and i had an argument but i know she felt worse about it then i did as i just took it as a normal argument where as she felt alot more guilty then usual because of what i am going through, i guess what i am trying to say is your mum wont be feeling like your being 'extra' argumentive then you would if she wasnt in this situation So try not to feel terrible about it as everyone is human, we all argue especially when tired and stressed which is no doubt how you both feel, sorry hope that made sense its difficult to explain. Hope she is feeling better now too, take it easy x x x

lou- hello sorry to hear about your partner :( again not sure if this will help but ill try. I suppose i come from a different angle to most on this tired as i have a gbm4. But i will agree that state of mind plays a huge part in dealing with it, and also obviously you will both have your down days but i find it very useful sometimes to cry if i have to, alot of times its on my own however as i dont want my family to know how upset i am so my close friends are easier to do this with, so if you see him a feeling down sit and talk about it if he wants to get it all out, i find it helps alot just to let it all out, its a good release.

take care. X x x x

aaah first scan since radiotherapy finished in the morning, results friday i think so i will keep you informed! Then monday back on the tzm which i hope goes alright, so far i was fine with it but it changes now to a months worth in a week then 3 weeks off then the higher dose again for a long long time :) i hope i can cope with it, im quite scared to be honest.

but bed time for me night night love to everyone and all take care and take it easy. So much love and hugs! X x x

More from this forum

Glioblastoma Why Why Why <br/>