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.
Sorry that you are having a bad day, hope both you and your mother are feeling better now. I know what you mean about people not understanding if you have not been affected by this type of cancer you cannot fully understand, people do try but they have no idea, I now feel like we are living in bt world a bubble inside the real world, I know its sounds odd but its how I feel. Be careful of the vimtos I am rather under the weather today.
Sounds like you have had a rough time too, it must have been really tough for you going to your dads clinic, a reminder of how life was before this nightmare begun, take care.
Glad that you are feeling a little better, it is good to come on here and offload to people who know what we are all going through, and also have a wee laugh at times, your sensible by stopping at 2 vimtos I dont know how many I had but can feel it today.
Good night everyone hope your all as well as possible, I am off to bed for any early night.
From thinking that BTs were fairly rare, I can’t believe how often we get new people posting on the website. Even in the short space of time that I have been visiting a lot more people have joined than I would have thought.
I hope you’re not too snowy, I went out about half an hour ago to collect my youngest form his friends and a small amount of snow had settled and it was very icy. It should be fun travelling to RT tomorrow. Luckily, because of B’s immobility, we are driven down by a St John’s ambulance. I don’t know what I would have done without them. It’s our last week this week and all of the crews have been fantastic. It’s a bit sad to say, but I think we will actually miss our trips for the RT.
B’s RT has been going well. He is tired and his hair is falling out (but he hadn’t got too much to lose so he’s not bothered about that), but apart from that so far he has been lucky. From reading all your posts though I am well aware that he could expect side effects when the treatment has finished.
Gayle – Glad you all enjoyed your day out. We went to our local for the first time in months last night. I stuck B in his wheelchair and walked down there so I could have a drink (is it an offence be drunk in charge of a wheelchair?). To be honest it was the first time I felt strong enough to venture out but we had a good time and we actually managed some conversation that wasn’t medically related.
Emma – It’s just shows BTs are never predictable when Mathew’s has grown but he is doing a well as he is. I hope things go well with the trial.
Lesley – Sorry to hear you are all unwell, but I hope you’re starting to feel better.
Joan – Hope you and David are ok. Where do you get you supplements? B has almost finished his RT and chemo, but as his platelet count has been low and his TMZ dose was halved as a result I would be interested to know what B could do to boost his platelets. He haemoglobin (?) and white blood cell levels have been fine all the way through.
Janpix – Sorry you have had to join us all. I think I am one of the newer posters and I would echo Joan’s words when she said your ‘whole system can’t stay in misery’. When I first came across his site I was lost and so down. Now, about a month on I realise that the way for me to deal with this is to take each day (or sometimes each hour) as it comes. At first you are overwhelmed with information but I have found that in time things slow down and you come to accept a situation and can live with it. I try not to look too far ahead and make the most of any good times. Sometimes it’s very hard but I find it works for me.
Izzy – Hope things have improved for you. I am dreading when B starts his six months of chemo. He was quite poorly when he had a holding dose a while ago and I am keeping my fingers crossed that he won’t be like that next time.
I think I had better shut up now as I have rambled on enough. I haven’t posted for a while, but I think it will do me good to keep up with all of you. We are all going through a horrible experience, but it’s really good to be able to hear all your positive news and to see what a help your encouraging words can be when things aren’t going so well.
Thinking of you all
Carrie x
PS I think I must be one of the odd ones out. Do most of you live in Scotland. I’m down at the opposite end of the UK!
PPS In the space of time it took me to write this there have been a few more postings. I think I need to speed up my typing!!
Gayle, your description of us in a BT bubble in the real world was very apt, that's jsut how it is. yes, we do go to Arran (or did) often as hubby's good friends parents live there all summer, so we go to visit - I love it there. I can't believe there are people who live in Ardrossan who have never been! hope Martine enjoyed the amusements - penny falls for me every time! Karen, sorry you have to find yourself here, but keep posting,it really does help. one day at a time is the best way, you can never second guess GBMs as we have all found. We have all done the internet searching, but I don't now as I find it too confusing and also depressing ultimately. Izzy, hope nausea settling now joan, try putting it into a word document first, then you won't lose it. Robin explained how, I think you just copy and paste, I'm going to try it soon A few of us on here are from Scotland, but not all by any means! and we do speak English...... godnight all diane
Lots of lovely snow here today, niceto see, Martine was very happy when I took her to school this morning. Carrie, I know exactly what you mean about missing radiotherapy, I did too it becomes a big part of our lifes, a daily routine for 6 weeks. Glad you had a nice night at your local, its good to get to get into the real world for a while, I know I certainly enjoyed getting out it has been so long, sometimes I feel so isolated, I have not worked now for 7 months since Martins diagnosis, and very rarley that he wants to go out, I dont think there is a law about drinking and driving a wheel chair lol.
Joan hope you and David are well, I hate when I loose a post its so annoying.
Karen hope your mother is okay and your work is not too bad
Diane, Martine enjoyed the amusements and playing with her friend it was really good for her to get out and about at the weekend most weekends we just stay home, I agree Arran is lovely, hope your husband is well and you and the kids too.
Lesley, hope your flu has cleared up, and the kids are better too and also your dad.
Emma, hope you had a nice day yesterday with your family and that you Mathew and the kids are well.
Izzy hope your husbands sickness has passed.
Oh well off to get Martin ready his relexologist comes today this does him a power of good.
Afternoon all, Well due to the thick lovely snow outside we didnt make it to the hospital today - we would of tried but had a brain wave and called the hospital first and all appointments have been canx today, so hubbie walked to work as usual.
The worst of it all is the schools are all closed in Surrey so got the kids home and they are driving me bonkers!
Made the snowmen, now they are bored - good old grandad has just walked here with a sledge and is taking them out - YIPPPEEEE!
Now we sit and wait to see when the appointment can be rebooked - I only hope that it doesnt hold up the trial starting on thursday. Still keeping everything crossed.
Would love to know why everything comes to a stand still - even the local marks and spencers is closed!!!
We're snowed in in Sussex and unable to get to RT. Our 6ft 4in 21 year old has been outside making a snowman and had a whale of a time (I'm glad he still enjoys things like that). B would love to be out too and he is sorry that he is not up in London to see the snow there as in the 27 years he has worked up there he says snow rarely settles in the city.
Joan - Robin's advice about typing your post in word was brilliant. I kept losing mine. Having said that I have not done its for this post which i may regret. Unfortunately, it meant that I could really waffle on with my last post. Still, if people read it at he end of the day it may send them to sleep. Thanks for your friend request which I have accepted.
Emma - It's really quiet around here as we live near two schools, a main road and the railway line. Both schools are closed, hardly any traffic is driving past and there are no trains running between Brighton and London. It's almost eerily quiet.
Taking advantage of a day at home to catch up on washing. I don't know how our two boys do it but it's a rare occurance for us to be able to close the lid on the laundry basket. Thank goodness for tumble dryers.
