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

Lesley - Thanks so much for your post last nite, feel a little better today its just when I see her so ill and feel so helpless I hate it, you have enough pal on your plate too with your Dad so thanks for being there for me, you know I am there anytime for you chat soon xx

Susan - Thanks so much for your post, feel a little better today, just hate seeing Mum so dam poorly, sun shining here so hopefully it will lighten my mood a little, Mum still asleep just going to let her as she needs it.

Hope everyone else is ok.

Chat soon, just going to grab some brekkie and read the sunday papers with hubby.

Lorraine xx

FormerMember over 15 years ago

Hi Julie and Stephen sorry about the news that the tumour had regrown- we've been in that position and know how devastating it feels. My Daughter -15 years old had regrowth of 1cm on the first scan and after resection, chemotherapy (Temozolomide) and radiotherapy- she then had a further operation where they resected the tumour aggressively, placed gliadle wafers in situ and now shes on CCNU and procarbazine- the consultant decided not to give vincristine as well. She has had a further scan which shows no new growth -so its good news for now. I hope you go on ok tomorrow. Take care xx Dianne J

FormerMember over 15 years ago

Hi folks

Mum is up for a little while and I have made chicken for tonights dinner so she is going to have that with mashed potatoes, I would not say her cough is as bad today but I am going to get doc tomorrow as she was meant to come back anyway and see if the course of anti-biotics had worked, I feel a little better today too, tidied my house and generally just had a day for myself which was nice I also received a surprise phone call this morning too from the founder of this thread the lovely Gayle!

- Gayle my friend it was lovely for you to take the time out and speak to me, your just as lovely as I thought :) really looking forward to hopefully meeting you on the 2nd, I also meant to say to you in one of your earlier posts you mentioned Dalegty Bay, Burntisland, Pettycur etc anytime your that way I am just about 10 miles from there please get in touch and come and see me, the door would always be open anytime, hope you enjoyed your break at the caravan and your feeling a little better now, give my love to Emma tomorrow too please, thanks again Lorraine.

Lesley - How is your Dad today, I PM you earlier, hope you can make the 2nd too at the Western, Gayle said she would join us for a blether and we will get to meet each other, as I said to Gayle today I am so glad I have found you guys, I do post on WTBT too as you know and have made lovely friends from there too just so sad we have had to meet under these circumstances, thanks again for your words of wisdom last nite, means so much.

Julie - So sorry to hear about Stephen, hopefully he will be able to get another sort of treatment.

Dianne J - Hope your daughter is doing ok.

Diane - Thinking of you lots and lots along with Emma, Carrie and Jay.

Becca - Thinking of you lots and lots x

Susan - Hope you and Paul are fine, also hope your Dad is a little better too.

To all the other lovely folk hope you's are ok.

Lorraine x

FormerMember over 15 years ago

Hello all,

Well I can now tell you Scottish girls that Paul and I will be coming up to visit your lovely country in 4 weeks time. I got Paul to plan out the route he wants to take. He wanted to revisit with me some places he went to when he was in his 20's.I've now booked us and Bullseye into various b&b's and small hotels so it's all planned now. We will start from Jedburgh then it's Birnam, Drumnadrochit, Plockton, Fort William and finally Loch Lomond (Tarbet.) Paul is so pleased about it.

My Dad is still in hospital but so much better now. They have changed his drug regime so that he has the syringe driver working 24 hours a day and it seems to be helping his mobility. The Consultant has told Mum that they are aiming to get him home by the end of next week. While he has been in hospital my wonderful brother in law, helped by my brother have constructed a downstairs cloakroom at the back of the garage so when Dad does get home, that should make life easier for him.

Hope everyone has had a peaceful weekend.

Love to all,

Susan
xxx

FormerMember over 15 years ago

Hi all,

Gayle, hope your all ok tonight, good talking to you again, still cant get over what a party animal that hubby of yours is! x

Julie - so sorry to read your post about Stephen, wishing you luck for tomorrow and i really hope there's more that can be done, some people have done very well on other forms of chemo so hold onto that if you can. Let us know how you get on. x

Becca - thinking of you all so much love - dont want to hassle you with textes as youve got enough on your plate right now but please let us know how things are (when you can manage)x

Lorraine, got your message pal - you can expect a message from me anytime soon! Have put the 2nd of June in my diary and will 100% be there...is it at the Maggie's at the Western...there's no way I could get to Fife...its a standing joke with everyone how bad my driving is...too scared to drive outside edinburgh and have never ever driven on the motorway (im such a wuse) - will be great to finally meet - Im always here to give words but I dont think there's much wisdom in them!! Hope your mum is settled tonight. x

Susan - I hope the sun shines for you when you come to our bonny land - What a great idea to visit places Paul went to years ago - Im ashamed to admit I've never heard of two of the places your visiting! Good to hear that your dad is a bit more settled too - that must make you feel a wee bit better. x

Diane J - good to hear your daughter is doing well just now - along with young Christie that is fabulous.
x

Carrie - so good to hear from you again and i hope your as well as can be - when is it you go back to work?

Joan - was lovely to see a post from you too - Im glad your both still able to enjoy the very small pleasures in life - walking in the woods etc. love to you

Love to Debbie, Diane, Emma, Eileen, Jay and everyone else my tired soul has forgot..

To cut a long story short this has been just one awful weekend - my dad is still in hospital, he was put on a medical ward on Thursday after having a seizure and blood pressure through the roof (to me he should have been put on an oncology ward) he was very dysphasic, unbelievably agitated and even tonight, seems to be in a faraway land and is obsessed with strange things (buying a new coat?) He is adamant he is coming home tomorrow and says he's going to "walk in front of that bus" if they dont let him out - he pointed to a bus in front of him, which obviously wasnt there. I feel so bloody angry tonight as he's been left for days in a ward where no one has given him any painkillers, no one from his own team has even been to see him and quite frankly, although the nurses are nice, i dont think theyve even heard of the word "glioblastoma" - sorry, rant over but i have just wanted to shout about the unfairness of this all day. I was totally fizzing earlier - tomorrow is a new day so we'll just see what that brings - just rememberd i now work a Monday too (its a 3 day week i work so cant moan toooo much) - oh damn!!
gnight folks.xxx

FormerMember over 15 years ago

Evening all

Just a quick post from me really tired, to much wine over the weekend :) having a wee break from it tonight as Emma will be here tomorrow night wonder how much we will get through?? Really looking forward so much to meeting her what an amazing lady sending you big hugs hun. xxx

Lorraine fantastic to speak to you today, hope you are feeling better tonight, your mum will pull through this dam infection I can feel it , looking forward to 2nd also to meet you and Lesley. xxx

Lesley, sending you love me and Emma will give you a call tomorrow night. xxx

Julie, so sorry to hear your news, but as the girls said there are other chemo's out there that shall help Stephen. xxx

Diane, thinking of you and the kids. xxx

Carrie and Jay hope your enjoying them new cars. xxx

Becca, hope things are better for you too love. xx

Debbie, joan, Rona, Christie, Susan and everyone sending you all love, I am off to bed now Martin falling asleep on the sofa.

love Gayle. xxx

FormerMember over 15 years ago

I just wanted to say a quick hello. I have been thinking of you all. We have been away on holiday so I have a lot of catching up to do on here. I will post a longer message once I've had a chance to do that.

There is not much change with my Dad. Still exhausted and sleeping most of the day. Third round of temodal due to start soon. I will be back in the UK to see him in 4 weeks so I'm looking forward to that. He has a scan on June 8th which will be a nervous time. I should be able to go to the results appointment with him.

Take care. Thinking of you all

Hugs, Rona xx

FormerMember over 15 years ago

Hi folks

Just a little update re Mum, doctor came out today and gave her more antibiotics, he was not that optimistic they would do the trick, but we have to hope eh, just like how I have had to hope for the last 2 years, district nurses came in tonite to help with Mum as the Dn from this morning must have knew that she is quite weak for Dad and Scott and I to manage her so we await the hospital bed which gets delivered Wednesday the doc asked Mum if she wanted to go to hospital/hospice and yeah you all guess it her answer was a straight no, so hopefully folks she will pick up with the antibiotics but I suppose we will never know that until next week.

I feel full of mixed emotions today been out for a meal with old boss and pal and it was nice but then I came home and lay on Mum's bed beside her listening to her chest being very badly and hurstly and just thought where has the last 2 years of all our lives went, tomorrow is my 33rd birthday and Mum does not even know its her little girl's birthday so so sad, Dad gave me a lovely card tonite which I cried buckets when I read the words on it and I have also ordered a bracelet from them an 18ct gold swarovski crystals with lovely words I am going to share them with you's as the order is on my pc table and I just want it to treasure forever:- here goes:-
My Daughter I wish you:-
when you're lonely I wish you Love
When you're sad I wish you joy
When you're discouraged I wish you Hope
When your spirit is low, I wish you Beauty
When your troubled I wish you Peace

I don't know what it is but when I read the words I can hear Mum say them to me, anyway folks I should be grateful that I still have her with me even though she is quite distant at times now.

Gayle - I have justt returned your call and spoke to your darling hubby, hope to chat to you and the lovely Emma soon xx

Lesley - How is things with your Dad how did you get on with Shanne, text you soon pal, thinking about you lots can't wait to meet you on the 2nd all being well.

Rona - Be so lovely to come home again and see your Dad bet you worry like crazy being so far away.

Becca - Thinking of you lots, hope to speak to you soon.

Diane - Thinking of you too as you start the new week ahead.

Julie - How did it go with Stephen today praying like mad you get a new form of chemo.

Well folks I have just done a bit of housework as no doubt the house will flow with friends and family tomorrow don't really want cards or gifts to be honest would just give the world and back to have my Mum well again .............

Goodnight folks.

Lorraine xx

FormerMember over 15 years ago

Hello ladies

just a quickie - been away a day or two with David and our boy to Devon in a caravan - ooooh yes Gayle, we're at it too!!!! It was lovely - went with D's brother and sister-in-law so lots of fun (and moral support ) - Absolutely knackered tonight tho' as we broke down on the way home on the big dual carriageway and had to wait for an hour for recovery ( aaaaargh) which D really couldn't be doing with - think he felt so helpless and was so anxious about it all - worrying that we weren't safe, that our lad would get hurt etc etc - very difficult hour and he's been worn out ever since - funny how small and safe your routine gets in these circumstances and how awful it is when for one reason or another, something difficult and unforeseen happens - sometimes you realise you're just coping and that actually it's so fragile

Anyway enuff about that - it was a lovely weekend until then and I've now got to be calm and rest him so's he's in good shape for the Wednesday scan (as long as the car doesn't do it again on the way -lol )

Julie - on the subject of scans, sending you and Stephen much sympathy and love re your results - we've been there too with regrowth and have now been off temozolomide since february. David's due to start PCV at some point but our consultant keeps putting it off 'until we really need it' . I have to say , when we had the bad scan in February, David was really struggling - his mobility was getting very poor, his speech and thinking was awful and the scan just confirmed worse fears BUT since then, he has improved, so don't give up hope - It seems possible now to me that at least some of the scan was showing radiotherapy after effects because i think at that time - 2 months after finishing rt, David had the typical bad dip- swelling on the brain - and all the symptoms that come with it - stumbling, staggering, no language skills etc etc . I can't look at your profile cos I'm on the wrong page, but when did Stephen finish RT? Is this the first scan after treatment? It may be that some of his problems relate to this. Don't despair - we've learnt from experience that things can improve again - I hope this may be the case for Stephen too. It may well be that also Stephen may be one of those that do well on PCV chemo and some do very well - whilst there's an option, keep your chin up . Much love to you both xxx

Happy Birthday for tomorrow, Lorraine - Hope Mum picks up and can enjoy a moment or two of it with you - Lovely words on your bracelet and maybe somewhere deep inside your Mum, her voice and her lovely heart are saying just those things to you - BT's trap people inside themselves in so many ways- ultimately you remember and know how much she loves you and that's why you can hear her voice speaking those words. Hope you and your Dad can have a happy moment or two as well on your day xxx

Lesley, Becca and Debbie- Wishing your dear Dads all the best - It's so difficult to read your post Lesley, as your dad seems to have the lot thrown at him and yet still he's doing battle - Sometimes it's like an invisible enemy in the room with them that only they can see - does that sound daft ? It's just that they are locked in and have to do battle so much within themselves and on their own - in their own thoughts i suppose. Wishing you all strength and lots of love xxx

Gayle - glad you've had another happy weekend - We did too - i'm a caravan convert - you don't have to do any housework cos there's nothing to tidy !!!! you don't have to cook cos there's a clubhouse!!!! You've got to have a drink cos you're going to Kid's Club to do the Cha Cha slide WHOOPEEE!!!!!! lol - I'm missing it already...

Hope Martin's still raring to go - what an advert for honey he is!!!! Have a good week, lots of love xxx

Off to bed now, promised myself an early night and dear, oh dear - here we are 23.46 pm tch tch

Thinking of you all , BIG HUG Diane, hope you're ok xxxx Much love Carrie and Emma xxxx

speak soon, lots of love

Joan xxx

FormerMember over 15 years ago

Hello All,

Well things really have gone rapidly down hill here.
Dad is now imobile in his hospital bed, with syringe driver giving him little helpful doses of morphine. The dex has been stopped, there really is no use for it anymore.
He can swallow very little apart from cold soft sweet honey dew melon which he always loved (and provides some water intake too)
He has also managed to pick up another chest infection which you can hear loose in his chest, but he no longer has the reflexes to spit it up.
So here we are..just waiting and hoping that maybe he'll sit up and talk..but that really is no longer possible. He looks through us vacantly while we are all in the room, i know he hears us..he can still squeeze my hand when i ask. I wonder what he is thinking, i pray he isn't scared or distressed. I worry - have we done the right thing by not ever telling him the full story.. I think i will wrestle with that one for a while.
Fraser managed to get home from Gabon in Africa a little sooner as timescales really are against us.
He still manages to look so handsome, if not a little thinner. We have relinquished a bit of control and have let carers come in three times a day to freshen him up. He still smells lovely, he always wears lagerfeld...an oldie but a goodie...I wish i could still smell the cigars though...that would be such a comfort
I never managed to do my 10 k as i managed to pick up a chest infection too and could not have left mum really.. so to those who sponsored me im sorry, but my friends still completed it and we have just under £400 so far. I will do my own 10k run though to make up for it.

LORS - What can i say love, i hope you manage to have a good a day as possible tomorrow, always thinking of you too xxx
Diane - You have never been far from my thoughts this week, i hope you are taking each day as it comes and doing ok much love and hugs xxx
Lesley - Im sorry dad went back in to hospital, did he get out... is he doing a bit better? hope work is going ok xxx
Gayle & Emma - sorry i missed your call, i hope you are both having a lovely night and that you are enjoying the best scottish hospitality xxx
Carrie - how is work? I hope you are doing ok xxx

To everyone else out there living this waking nightmare I hope you have as peaceful night as possible.

You may not hear much from me for a wee while i guess, I'm living life on auto pilot at the moment - reasonably calm but most certainly heart broken.

Love to all

Becca

xx

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Glioblastoma Why Why Why <br/>