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.
It's been quiet on here lately so just thought I'd pop in and say Hi. Hope everyone is doing ok this weekend.
Michael hope your Dad continues to feel ok during treatment. Getting to the end of the radiotherapy felt like a bit of a milestone to us. Nice not to have all that traveling & waiting anymore. Someone else on here went to the conference too. It sounds very interesting, what a good idea.
Gayle hope you and Martin doing well.
I have had an extremely frustrating week trying to organise a blood test for my Dad which I really think he needs. Now of course it's the weekend, nothing has happened and can't try again until Monday. The time difference really makes it a pain. Will be much easier when I'm back in England next month. On a lighter note I took my baby on his first trip to the zoo today. Great fun.
this has been so quiet lately. Is that a good/bad sign or neither? Gayle are you still away in the caravan? Does Martin have a scan this week?
My Dad starts next round of tmz tomorrow. 4th one so the end is getting closer. Nothing much to report. He's still tired and not feeling great. I've booked my flights and will be back there with him at the end of august which is great.
Yes things are very quiet aren't they? We'd slipped to page 3 hadn't we?? Page 3 - eh!!!
I am feeling more helpless than ever at the moment. My poor mum is suffering so much with the TMZ - she is due to start Round 2 of 5/28 next week. But Round 1 had her hospitalized with diarrhoea again. She's absolutely dreading starting it again and has had panic attacks and isn't sleeping or eating due to the worry. Basically it's ruining what should be the good weeks in between treatment. I have been worrying that she hasn't understood the final outcome of GBM as she often talks about "when I'm better we can...." or "I don't mind feeling this ill as the chemo might kill the thing off completely" but she had a serious conversation with my sister on Sunday and admitted that she does know the final score but if she admits it she'll get depressed and that won't be good for anyone. So she chooses to keep telling herself that her cancer will be cured with chemo and so that's why she could never make the decision to stop the chemo. This whole bloody illness is just pure hell for everyone involved.
Hi! Jamie finished his 6 weeks of radio and chemo last week, very strange not having to arrange ourselves around the hospital appointments and am thoroughly enjoying not have to rush around getting everyone out of the door on time! although all the things we had put off due to hospital appointments i.e wedding stuff has all now caught up with us again paying bills, finalising menus and trying to learn calligraphy for place cards!!!! Jamie had no problems during the 6 weeks, we're now waiting for the tiredness to kick in. He also had no swelling so still no steroids which i dont know whether is a good thing or not as the swelling is normally down to the treatment working is'nt it? Scan has been booked for the week before the wedding so fingers crossed, will make the day so much nicer if the scan is good so here's hoping.
Christie - how was Glasto, watched it on tv looked amazing. Me and Jamie used to do the festivals before Connor came along so do miss them when their on the tv but certainly do not miss the toilets!
Michael - I looked at that website mymangosteen. I do think anythings worth a go within reason but cant help thinking if these things are that amazing why are'nt the doctors giving patients that instead of other treatments. I think sometimes we're so desperate we'll try anything, Jamie does have supplements and juices to help his immune system stay ok but i think you can spend an absolute fortune which we certainly dont have at the minute. I think that mangosteen stuff costs about £12 a bottle and you're supposed to drink a couple of bottles a day, we'd have to re-mortgage the house!!!
Rona - god it must be hard trying to arrange things for your dad from over there, time difference must be a nightmare! How did your baby cope with the long flight? we're only going to spain for our honeymoon and im dreading trying to keep him under control on a 2 1/2 hr filght! Had to go to the registry office to pay the registra fees yesterday on my own with Connor, had to leave the pushchair in reception and he was a complete nightmare.. trying to grab things off the ladies desk. tried to fob him off with keys, purse, diary but nope didnt work so he ended up having the mother of all paddys, could of killed him!!
Hopefully you will get good news like we did the week after our wedding in May (although the news is never quite good enough). Hubby had his MRI scan the day before the wedding and we found out the following week that there was a good reduction in size. When do you get married? Have a brill day and make the most of every minute because the day flies in.
Not been on for ages as just came back on sat night from 9 days in Spain and have been back at work since Monday...Im at work just now so just a mega quick post to say hello, I havent disappeared! and hope everyone is as well as can be...i havent managed to catch up on all the old posts unfortunatley.
Gayle - Hope your enjoying the caravan love and that Martin is continuing to do as well. xx
Lorraine and Becca - hope you two girls are bearing up, will no doubt speak to you on facebook soon....still no mobile, promising myself to get my finger out and get one this weekend! love to you both x
Laura - fingers crossed for the scan and hope you can enjoy organising your wedding, im sure organising it will help you focus on other things, although your baby will do that already! Were just back from spain and my boy is one and my daughter is 4. He was a wee rogue on the plane, shouting, wanting down on the floor etc...lucky its only a short flight! xx
Rona - Not too long until your back by the sounds of it, you'll be so relieved to be back beside your dad. x
Love to all Julie, Michael, Christie and everyone ive forgot which is no doubt lots today!
Things not good this end, my dad had deteriorated quite a bit whilst we were away, i noticed a huge difference. his dysphasia is almost all the time now and the steroids have been increased to 12mgs. He can hardly walk more than two steps now without being floored, even with the aid of his zimmer. Sometimes he is not lucid at all and doesnt know his own name, others, he is very aware how bad he is..he said to me last night that he was "finished", its so awful. The districut nurse today has now spoke of macmillan input and maybe even hospice respite to get his pain control of his back under control. Some help is now needed as my mum is about 6 1/2 stone and looks so so ill. Anyway, my friends, will update later and speak to you all soon. lesley xxxx
Hello all - not been on much lately but always read the posts
Hi Lesley, good to see you back -hope you've had a lovely break but so sorry to read of your Dad's deterioration - Be thinking of you all and wishing you and your Mum lots of strength and your Dad some peace of mind
I know that others have discussed holiday insurance previously but I would need to trawl through we have been given a quote of over £1000 just for H. Been informed its because she's still on chemo and they asked a lot of questions regarding her epilepsy which is not really a problem at the moment. Anyone got any info on insurance with more realistic quotes? Thanks. Sorry to hear about your Dads deterioration Lesley. Laura H didnt require steroids more than 3 days after surgery as they had removed a large tumour so there was room for the swelling to go into does that make sense so not always a bad thing. Michael ask re combination of antiemetics for your Dad as nausea is so debilitating - We kept on until we got the effective combination- ondansetron and cyclizine Love to everyone DianneJx
Hi Diannej When we were enquiring about holiday insurance we were getting quotes like that, some would'nt even insure once epilepsy was mentioned. When we asked our Oncologist about it she said that if you've got your E111 card you will get any treatment/care that you would get at home as long as you were in a state hospital and not private and in the EU( a lady i rang and spoke to about E111 confirmed this). The one thing it does not cover is repatriation but if that was needed it would cost less than insurance quotes anyway so we just got normal insurance. Hope this helps. Best wishes to you and H. MollieXX
Dianne, sorry cant help you at all on the Insurance side...we unfortunatley never managed to get my dad away, good luck with it all, a break would be fantastic....can you remind me when the programme is on ...is it BBC1? I was telling the girls in work about it today but couldnt remember when it was on...the more awareness the better....love to you and H. xxx
Joan...lovely to hear from you, thanks for your thoughts...hope your all managing as well as can be. xx
Its my 6 year wedding anniversary tomorrow...we were married in vegas at the Bellagio, tried to speak to my dad earlier to remind him of the day but he didnt have a clue...although he remembered the goalie coach from hibernian football team was sacked a few weeks ago??!!!
