Glioblastoma Why Why Why <br/>

Hi everyone

Nice bright day here today, snow nearly all away Martines snowman still standing though, I still feel so tired, Martin doing really well, think I will have to try some manuka honey myself. Martin now on round 5 of tmz and still feeling good long may continue.

Joan, great to hear from you, glad you are feeling a bit better I didnt realise that you were still working, along with looking after David and the kids and all the house work how do you manage it all?? Yip going to the hospital and sitting about can be so boring and tiring, never any good mags, although at times it can be nice to speak to people going through the same as us.

Lesley, did you find out about changing your dads diabetice meds, hope your well how is the weather in the capital today?

Izzy, your husband is doing better and keeping well.

Emma, hope Mathew is continuing to do well with the new drugs, he is an inspiration to us all.

Carrie,Hope the car is running ok now, how is your husband, are you missing the RT?

Karen, hope your mother is a bit better today and the medicationis helping her, you must be so worried, this illness is just so unpredictable.

Love Gayle xxx

Hello everyone

This is a message I typed ready to send on Monday evening, but I’ve just realised it didn’t get sent. It now gives me the opportunity to waffle on even more in another message afterwards.

What a day! We managed to get the car sorted. A new battery, £100.00, but it’s the first time we’ve had to change a battery and the car is nearly ten years old so we’re not doing too badly. It just doesn’t get driven much at the moment.

B has developed a chesty cough, which along with a bad back meant that it took a carer, one of our sons and me about an hour to get him up and dressed this morning. His back hurt so much it was really difficult to get him out of bed. He travels to RT by ambulance on a stretcher so he can be transferred more easily on to the treatment table. This is fine except that it meant his back hurt a lot when he had to get out of the ambulance. He needed gas and air in the end! We told him he was being a drama queen because it was the last time he was going for treatment. He’s now back in his comfy chair, tired but ok but it will be another night for me on the sofa while he sleeps in the chair. I know some people may this the idea is awful, but on Wednesday B will be going in to our local hospice for a while so they can try and sort out his back and generally make him feel more comfortable. Our local community nurse said she was surprised he didn’t need to come in before now.

Izzy – so pleased to hear that your hubby is now back home with you. One of the saddest things we find with the way B’s tumour has affected him is that he can’t cuddle me in bed. He has to lie on his back and can’t move and the pillow raiser that he uses means he lays about six inches above my level (if you can imagine that?) and it also means I can’t get too close to him.

Gayle – I’ve been looking for the jump leads and now found them. I’ve put them in the back of the car. Enjoy the snow. We have just got heavy rain down here now. At least now B’s RT has finished we don’t need to go anywhere tomorrow so we can stay inside warm and dry.

Emma – really pleased to hear everything is going so well with you. It constantly amazes me when I read of Matthew still going to work. They can be so tough and determined sometimes can’t they.

Hope everyone else is ok and not too wet or snowy.

Carrie x

Hi everyone

Sorry but I am really going on tonight and being very selfish! I realised the message I wrote earlier hadn’t been sent, so I am subjecting you all to two long messages.

B has gone into the hospice today. I thought I would be ok about it as he has been in before but now I have got home I feel lost. To be really morbid I think it makes me think of how it will be if he’s not around.

I also had an email from my line manager at work asking me when I think I might be returning to work (my doctor has signed me off due to stress). It’s difficult to know how to reply as BTs are so unpredictable. There is no way I could leave B at the moment as he can’t do much for himself. But I don’t want to do anything silly like give up my job to look after him because we don’t know what the future holds. I’m not feeling very strong about dealing with that either. Work is something I could have discussed with B before but his reasoning is not the same now and he’s not always very practical or sympathetic.

Gayle – I think we are fairly lucky at our hospital. Parking there in general is a nightmare but our Cancer Centre has a designated car park just for cancer patients and parking only cost £1.00 for however long you need to park. Sometimes you have to queue for about half an hour but if you allow for that it’s ok. Pleased to hear tat Martin is doing well, but sorry to hear that you are so tired. We just have to keep going don’t we when we would like someone to look after us.

Karen – Hope your mum is improving. As Joan said generally when anti-biotics ‘kick in’ they can make a real difference. See if you can be referred to people like Occupational Therapists and District Nurses. I think you may have to be referred by your mum’s doctor, but he should be aware of her situation. Since B has been in touch with the OT especially we have literally been given all the aids we need. From shower and toilet aids, commodes, a wheel chair, ramps for our front door, a pillow raiser to help B sit up in and get out of bed, pressure cushions and a wee bottle. I know it’s hard for your mum giving up her independence but these things can really make such a difference.

Joan – you must be worn out looking after everyone and working too (and trying to sort out cars – brilliant when they work real pains when they don’t). It’s not just the physical side of doing things it’s the emotional side too. Sometimes I find that the hardest and that’s where I find this site a lifeline. I think I might bet booted off soon because my posts are getting too long. Apologies again to everyone for this.

Emma – Hope things are still going well with you and the girls are being good for you.

Izzy – Hope your hubby is improving. It’s scary when they come home when they have been so poorly. Not looking forward to a night without B but at the same time looking forward to sleeping in my bed as I have spent the last two nights on our sofa as B’s back hurt too much for him to sleep upstairs. Hope the snow is disappearing. We have been so luck down here in the south.

Oh no! I just realised my earlier message had been sent. I feel such an idiot. I thin ki need to go to bed and start afresh tomorrow.

Youngest son is off skiing for a week tomorrow, will miss him like mad even though at the moment he is hyper with excitement.

Starting to look at new cars tomorrow. We are eligible for the motobility scheme and as our car is not the best for B to get in and out of it seemed sensible to change it. The trouble is is that the sort of cars I would love to buy eg Mazda MX5 or a Mini won’t be practical. Oh well!

Hi to everyone else, I’m shutting up now.

Carrie x

Hi folks,

Hee hee, carrie, dont stop the long posts - theyre needed on here, so what if you post them twice!! Sorry to hear that B went into the hospice today, that's a difficult one isnt it? My mum doesnt even like to discuss the word "hospice" - she's of the old school in thinking that once you go in you dont come back out. Ive tried to explain that its not like that nowadays but she doesnt want to listen just now.

Gayle, phoned the diabetic clinic and weve to up the glicizide to 3 tabs a day instead of 2, he's not on metformin at all, Martin's on that isnt he - do you know the difference between the two? I took my dad up to get a massage at the Western General today, its funded through the Brain Tumor Association...he loved it., Martin gets reflexology doesnt he? The parking at the cancer centre at the Western has been scrapped too - couldnt beleive it, was quite happy to save my pound though! Hope you got your cleaning done girl!

Karen - do hope things have improved - its amazing how things can completely change after the right medication is given, whether it be steroids or antibiotics.

Joan - good to hear you upbeat again...rollercoaster doesnt even begin to cover it eh. Love to your doggy too ha ha!

izzy & emma, hope you girls are ok tonight.

much love
Lesley x

evening everyone

Had a very lazy day today did very little felt so wiped out, just feel mentally and physically drained, I had a counciling session this morning I had to cancel it I just did not have the energy to go, I hated to cancel,as I really enjoy going there it really helps me, I have hypnotherapy tomorrow hopefully I will be ok for that as I also love that too, its so relaxing, Martin still doing well started round 5 tmz today and he has managed to stay up since 8.30 this morning and he is still up.

Carrie, sorry to hear B is in the hospice, you will really miss him, what do they do in there ? Like you I am off work with stress have been for 7 months my employers have been ok but I do get calls asking about when I might come back, but as you say there is no way I could leave Martin there is no way he could cope himself and he is still taking these seizures, besides I really dont feel well enough to cope with work at the moment, we too have got the toilet, shower and walking aids as well as a wheelchair it really does help as Martin gets dizzy and gets seizures if he walks to far.

Lesley, Yip Martin takes both metformin and glicazide, one lowers the glucose level and one kick starts the pancreas to do the job naturally, yeah Martin also gets reflexology, the lady comes to our home once a week Martin really likes this and feels much better afterwards, hope your dad enjoyed his massage. Managed to do a little cleaning not a lot lol.

Dot, if you are reading this my thoughts and prayers are with you and Rodger, you take care of yourself.

everyone else thinking of you all and your loved ones.

goodnight love Gayle xxx

Hi everybody

Just an update my hubby now has c-diff I am so worried about him he is still at home with me but if he gets any worse they will take him straight into the hospital he is so weak at the moment I just dont know what to do any advice anyone have any of your loved ones went through this I have had a wee read at all your posts but dont have much time to speak at the moment I will reply to everybody later thinking of you all

love

Izzy

X xx