Glioblastoma Why Why Why <br/>

Good Morning all,

THe consultant was baffled as to why my mum was being so poorly with the chemo, and why she has now had diarrhoea for 2 weeks. She's now been off the chemo for over a week but still can't handle even a sip of water. Bizarrely though all her blood tests have been showing that she's "quite well"! Well yesterday the Consultant decided to look at the lab results himself - and thinks he has identified campilobacteria (sp) which is a type of food poisoning and thinks that is the cause, not the chemo. I so hope so!!! So she's on antibiotics for 10 days and she sees the Consultant again in 7 days to see if they're doing he trick. He's keeping her off the chemo though until she's sorted. She's been giving them stool samples every 2 days for the last 10 days so why has it taken so long - agh!! Oh well. But it will be great news if it wasn't the chemo causing the problems as that means she may be able to tolerate the further courses.

It's a sunny day here - everything seems better when it's sunny!

Evening everyone.

very quiet today hope everyone is ok.

Sallye, that is good news that it is not the chemo causing the sickness, hopefully the anti-biotics will kick in soon, take care. xx

Emma, my amazing friend, so nice to speak to you again, you take care hun you are truelly an inspiration to me, your strength is amazing, hopefully the little ones will be settled down now with their daddys t shirts and aftershave. My heart aches for you all, remember I am here 24/7 for you, only wish I was closer to you. love to you and the girls. xxxxx

Carrie and jay, love to you both. xxx

Lesley, Lorraine, Becca, hope your parents and your selfs are all well love to you all. xx

Diane, hope things are bearable for you. xx

Joan, Debbie, Rona,Sue, Suzanne Christie, Eileen, Julie,laura lou and all my other lovely friends
thinking of you one and all.

love Gayle xxx

greentree - hellooo yeah they did say that the first scan doesnt usually show alot because of the inflamtion from the radio therapy soo im not expecting alot but i will see in the morning :) i thought mine would be alot longer too, but it was just 4 weeks after the radio T finished. oooooh right ok hopefully i can cope with it too, i just thought because its a higher doseage it would be alot more intence but hopefully it will all go smoothly.

take care everyone hope all is as well as it can be xxxxxxxxxxxxxxxxxxxxxxxxx

Hi everyone

Just to warn you I suspect this might be a long one, I’ve a bit of catching up to do!

Car passed its MOT. Hooray!!

Diane – hope things are as ok as they can be with you. Try and enjoy the little things. Thinking of you all lots.

Becca – glad dad is over his chest infection. It’s so hard when sleep becomes and issue, we had that when B was more mobile. He was on a high dose of steroids (16mg) and found it hard to sleep. He would regularly be up at 4.00 am. He made our Christmas cakes one morning, which was interesting as he couldn’t hold things properly with his left hand and he wasn’t very steady on his feet either. He also used to wake frequently to go to the loo, which I had to help him with. His consultant prescribed sleeping tablets, which meant he could still get up if he needed to, but he dropped back off to sleep a lot more easily after wards. They helped us both a lot. As his mobility decreased, it became less of an issue and he slept through most nights. It was almost like when the boys were babies again.

Lorraine – I don’t think your mum’s care should have to be paid for. By the time B was as your mum is now, his care fell under continuing care and so was paid for by the local PCT. We had B’s hospital bed downstairs and I slept in a camp bed beside. Not the same as being in the same bed, but at least we were in the same room and could touch and talk to each other. It was also more comfortable for B to sleep in a hospital bed because of the pressure mattress and the fact that his head and feet could be raised as he couldn’t move himself in bed. Hold on to hope, while our loved ones are still around there is always hope. I now have hope for all of your loved ones and it helps me hearing that (some of them) are fighting these bl**dy BTs. I was so pleased I took the time off to be with B. I know my situation was different as I was caring for B but the fact that I did that is also helping me now. Try to think of carers as doing just the necessary things so you and your dad can then do the more enjoyable (hopefully less stressful) things with you mum, sitting and talking to her, looking through photos, anything that you can enjoy together.

Christie – thinking of you re scan results. I’ve got everything crossed for you. Putting on weight with steroids is horrible but I now think what’s the point of getting upset about something you can’t do anything about. It’s better to save your energy for something you enjoy. I think you have a really good attitude to everything you are going through. Keep smiling and keep posting, your posts are lovely to read.

Joan – so pleased you felt able to emerge from your shell. Hope you’re feeling stronger. You’ve been missed. Enjoy the walks, we’ve had some lovely weather. Think that’s helping me at the moment. I’ve always liked spring, seeing the new flowers starting to bloom and the leaves appearing on the trees. I think whoever we are and what ever our personal circumstances we can feel so much better if we take time once in a while to just look and take in everything around us. Welcome back.

Emma – I know what you mean, with so much to do it can be so difficult to have time to think about what has happened. We need to process what has happened in what ever way suits us. I am trying to go out as much as I can and say yes to any invitations I get. I only do what I feel comfortable with though. I’ve been invited to a BBQ on Saturday. Normally we’d go along, B would be the life and soul of anything like that. He would take along his home made burgers and potato salad (he was a much better cook than me) and we would sit in the sunshine feeling really mellow and then stroll home holding hands. It’s things like that that I know I’ll find hard, so on Saturday I’ll go along but I’m going to drive (so I can make a quick getaway if I need to) and I’m taking diet Coke for me to drink. Not the same, but I also know that if I didn’t go I would just be sitting at home feeling sorry for myself and I know that’s not good for me either. At least this way I will feel in control of things which I’m sure helps us all feel stronger. Hope the girls are coping ok. They are so young and it’s not fair that they should have to cope with this. It’s so much easier now my two are older. Even though they are B’s stepsons, they have taken it quite hard, and they were very brave dealing with having B at home for the last weeks. I agree Probate is stupid. Why do we have to go through all that when there is a will? I went to court yesterday with B’s other executor to swear the oath yesterday and I still have to wait about a week for them to come through the post. There will then be so much to sort out. The fact that B was immobile and his brain was affected too meant that I have been doing everything for a few months now so hat has meant that it’s not suddenly fallen to me to sort out. It was difficult for B though when he was aware that I was having to do this and he wasn’t able to any more. He also felt guilty that he couldn’t do things any more. I can’t believe it’s only two weeks since B’s funeral, it seems a lot further away. I’ve now got to decide what to do with his ashes. Keep strong. I’m thinking of you a lot and sending you all big hugs.

Jay – a few weeks further on than Emma and I hope you’re still feeling Jon around you. The love that B and I shared helps make me feel stronger. I bet the girls are really getting excited about Florida. I hope you all have a fantastic time. I thought I would like to go away with the boys too, but what do you do with an 18 and 21 years old? So my idea is to go to Las Vegas for a few days and we can just walk around open mouthed at everything. I’m looking at going in either October or February next year. They are looking forward to it too, so I really need to sort it out.

Izzy – hope you’re both bearing up. It’s so awful what you’re going through. Bad enough with what Blair is coping with, but the baby too. My heart really goes out to you. Sending you huge hugs

Eileen – you’ve been quiet recently. I’ve not posted much (but I’m making up for it now – sorry everyone, I hope you’re all still awake) and I’ve been reading all the posts. I hope this means that things aren’t too bad with you. Try and keep in touch. Sending you a huge hug too.

Rona – try not to worry too much about your dad being tired, just think of it as his body helping him to get stronger. Hope it’s not too windy in Wellington, which area do you live in? our friend lives in Brooklyn and looks over to the big wind turbine.

Julie – thinking of you and Stephen. I think someone mentioned you are away, so I hope you are having a restful time.

Debbie – is your dad still in hospital? I hope things have settled down a little and that his mobility is a improving? You also mentioned TB in an earlier post. You must be getting exhausted with dealing with all of this. Thinking of you lots.

Sallye – pleased to hear that the doctors seemed to have found a reason for your mum’s diarrhoea. I had campilobacteria (pasted your spelling) a few years ago and felt the benefits of the antibiotics very quickly. Have you been able to see her yet? Hope your veggies are coming along well.

Gayle – it’s fantastic news about the tumour. Martin seems so well at the moment, it’s lovely to hear. I would like to thank you for starting this thread (I know others have already done this), but I hope you realise what you have done by bringing us all together. It really has helped make the awful time we are all going through so much easier to cope with. I hate to think how I might have been had I not found you all. You are such a star.

Lesley – hope you’ve got your childcare sorted and that you enjoy your last weekend before you return. How’s the kitchen and garage conversion coming on, how long now? It made me laugh when I read about your confusion about Shanne and where she was from. Someone I knew was Welsh and it took me about two years before I could start to understand what he was saying.

Susan – you are so helpful to everyone else with your advice and support and I just realised that having read through your post you’ve actually written very little about how things are for you at the moment. I hope things are as ok as they can be. I love thinking of Paul spending time with Bullseye. B always wanted a dog, but it wasn’t practical as we were both out at work.

Laura Lou – sorry to hear about your partner. If you read my profile you’ll see that my husband B’s tumour progressed very quickly. His was inoperable though and you have to remember that everyone is different. I know it’s hard, but try and concentrate on the good things, deal with the bad and then try and put them out of your mind. Live for now. Enjoy planning the wedding with him and make it as simple as possible. You will find strength you never knew you had and I hope you find posting on here helpful. You can talk to friends but they don’t have the experience of the illness. As Emma said, attitude helps. Cry, scream, shout but smile when you are with your partner and make the most of your time together. Remember the things that happen aren’t things that he makes happen, it’s the tumour. I know B used to feel so guilty sometimes and I had to reassure him constantly.

I think I had better shut up now as this must be a record post even for me. I hope I’ve not bored you all too much. Gayle, I apologise if I’ve driven everyone away.

I’d better go and have a shower. I’m then going to try and be brave and go to Tesco for the first time on my own. I bought myself some huge sunglasses that I wear to hide behind, but I don’t think I can get away with wearing them in the shop, so keep your fingers crossed that I manage to do the shopping without getting upset.

Apologies if I haven’t mentioned anyone, I just read through posts from the last few days and picked up on what has happened to you all.

Sending huge hugs to you lovely, lovely people.

Carrie x

hi everyone.

Hope you are all as well as can be expected, thinking of all you lovely people, we are off again this weekend to our caravan m and m just love it, wont be home until monday as its a local holiday here and Martines off school.
I have just had fantastic news , I am going to get to meet Emma, and spend the night with her how much do you think we will drink?? Only joking she is going to be driving early morning the support van for the bike ride, I really cant wait to meet this incredible lady love to you hun. xx

Carrie, you are star with all that you have been through you are still on here offering your support to everyone, please dont stop stay with us I love to read your posts the longer the better, sending you big hugs hope you enjoy the bbq, it will be a difficult one for you tho. xxx

Becca, glad your dad is over that chest infection they really do take it out of gbm patients eh, its strange that after all this time your dad has went back on cigarettes the brain does strange things and if he is enjoying them thats good, speak to you soon been feeling a bit ill with the flu hope your well. xx

Lesley, Hope all ok in the capital and your family are all well take you will be having a small wine tonight, not long now till you go back to work. xxx

Lorraine, hope your mum is a little better and you have got care sorted, happy holidays to you and Scott:)

Diane, hopefully P is comfortable and you are coping big hugs to you. xxx

Sue, hope you Paul and bullseye are doing ok getting ready for that balloon ride.

Joan, thinking of you and david. xxx

Rona,Christie, Eileen, Izzy Jay, laura lou and everyone thinking of you one and all, I have to go Martin getting impatient he wants to get the car parked, have as nice a weekend as you possibly can.

love Gayle. xxx