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.
Thats great news that your brother is doing so well and getting home, bet he feels great for it, They can remove as far as I know 100% of visible tumour but there may be some hidden cells there, but take it as a possitive if they say 100% it must be, they cant lie to you. Just keep being possitve your brother sounds like a real fighter, his kids and the rest of his family including you will be so proud of him.
Vera - I so appreciated your information on your husband's experience with PCV. I have posted you earlier but wonder if you got it? Just want you to know how much it has helped me to stay 'informed'. You are right, of course, GP and nurses don't even know what PCV is..............I am almost feeling like a 'professor' in the level of knowledge I've acquired in this last 13 (very long) months. Love to you both xxxxxxx
Gayle: I know exactly where you are 'at'. Life getting tougher for all of us on this journey and now I am on 'second time round'/de ja vu, i.e. second op, more confusion, lots of questions, I wonder how much my poor body and soul can take. Roger is blissfully confused a lot of the time and very accepting of where life is at. A friend of ours asked him this morning if he felt better for having the second op: he said 'no, not really. I don't feel any better in myself and feel weaker than before the op'. This saddened me - especially when I think he has improved very slightly over the last 4 or 5 days in terms of the confusion. His legs are pitifully weak now though. He won't do 'big' loo in the commode and insists on me accompanying him on a stroll down the garden to our ground floor loo in the garden room. Twice, now, he's got 'stuck' where the legs just won't get him up again.
Tomorrow, Roger is off to the hospice for a 'therapy day'. They will be able to do a realistic assessment of his 'abilities', he will be able to meet with other people in similar situations (all women, I hasten to add!!) and will get lunch. I will, admittedly, not use the few hours I have to myself constructively............more likely, I will be 'popping in and out' of the hospice to check that Roger OK in the strange surroundings. I have asked him if he wants to 'leave' the hospice early to go off to a brain tumour support group which meets once a month at the Wallace Cancer Centre in Cambridge. Bless his heart, he is willing....................I just think, at this point, we would both benefit from shared face to face time with other patients and carers going through this awful ordeal.
I have started to feel 'more at home' with this thread - I know a lot of the lovely 'posters' visit both this and the 'we talk brain tumours' threads - and I know what that means to others who are 'popping in'.
I did decide, today, that I couldn't bare Roger sleeping most of the time when we haven't got visitors..........seeing him turn his back to me and face the wall and sleep..........sleep.............has been utterly soul-destroying. So? Today I thought: 'I have to get him up, give him purpose, keep him busy'. He's knackered now, of course, but at least he hasn't slept all day!! Firstly, we went to visit a dear old friend of ours at our local hospital - there for his last session of chemo for cancer in the hip, then visiting ex-father in law who has been 'resident' in the hospital for the last 2 months.........then a 50 mile round trip to get my mobile fixed..........walking Minnie (our black cocker spaniel) en route and letting her have a swim in this late summer sunshine. (Roger stayed in the car for THAT bit!)
Anyway, thoughts with you all...........it's tough for so many different and diverse reasons for ALL of us. I still can't fathom what any of us have ever done to 'deserve' this fate.
Just wanted to let anyone who may not know already, that the Government have passed a Green paper calling for the Disability Living Allowance to be stopped and paid directly to local Social Services so that they can govern how and what facilities/care it is spent on!! Apparently, there is due to be a 'White Paper' (next step in getting it through Parliament) passed in October/November. Please write to your various MPs..............or to Gordon Brown himself, telling them of your dissatisfaction about this. Everyone's opinion counts.
Dot, that doesnt surprise me, more money they will take off us, oh well we can all live on beans and toast, it will help with the diet lol, another little thing that will make you laugh Martin came home today from his charity shop visit with his usual junk but he also won a hamper in a raffell at the charity shop filled with some nice stuff he is so proud of him self bless him. Hope all goes well tomorrow for both you and Rodger enjoy your support meeting sounds really good hun.
Dot thats terrible news will definitely write. PCV was more widely used before TMZ was used H is on a reduced dose of CCNU now as her bloods werent so good.Hope it suits Roger and keeps the beast at bay, Love to all DianneJX
Further to my post yesterday about Government's intention to scrap Disability Living Allowance and Attendance Allowanece, this link will give more information: www.benefitsandwork.co.uk
Gayle: How lovely that Martin's daily trip was so fruitful yesterday!! I bet he felt as if he'd won the lottery, bless him. (Perhaps you won't have to resort to beans on toast just yet! ;0) ) Tell Martin if he doesn't get down here soon to do my housework, I might have to do it myself............starting TODAY whilst Roger is at the hospice day centre!!
Dianne J: Thanks for info on PCV and CCNU. I must confess that Roger is so weak at the moment that I don't hold out much hope they will even experiment with it. I'm not holding my breath but will be pleased for Roger if they proceed as I know he wants to give it a go.
Hope you are all well as you can be today, the weather here is now quite nice after some horrible rain and wind, today we are off to the caravan for the weekend, M & M are really forward to it, I wish I could share their enthusiasim, Martin again been up all night more cupboards emptied and old stuff scattered everywhere what a bloody mess, now he is very tired after this he shall sleep for 15/20 mins and be totally refreshed as though he has slept the whole night.
Dot, housework who cares, it can wait when you have a few hours to yourself today, go and do something nice for yourself you really deserve it you have been through so much lately as you know we dont get much chance to have me time enjoy yours today hun. xxx
Dianne, nice to hear from you how is Hannah, hopefully she is doing well. xx
Hi Gayle you must be exhausted is Martin still onsteroids as they can affect 'behaviour' to the extreme -even induce a steroid psychosis ? Would he discuss with the GP/Nurse? as he will tire if it continues.
Heres hoping you get a better nights sleep-H is fine thank-you shes tired if she does anything but she expects that. She has her next scan on 8th so back to the 'Gallows' for us. Take care all Love DianneJ x
Did I tell you that you can get a reduction in Council tax if you change a rooms function so that the individual with the disability can sleep in it? We were informed when H came out of hospital and could not get upstairs- It takes you down a band but like you say every little helps. Also exempt car tax if on disability at the higher rate. x
Roger had his first 'day therapy' visit to the hospice today. I left him (with my heart feeling very heavy) with a lot of sweet and lovely ladies but no men (except the Chaplain!). I thought he would be climbing the walls by the time I collected him but, in fact, I walked in to find him sitting with legs in therapist's lap, his eyes closed..........enjoying what looked to be an extremely relaxing and enjoyable foot and leg massage! He had actually had a great time!! He loved the fish lunch and apple crumble and all the ladies really spoilt him!
I then suggested we just 'pop in' to a local support group for brain tumour patients and their carers at the Wallace Centre in Cambridge. We hadn't been to any support group meetings and looking back at a year ago, I wouldn't have got Roger to consider EITHER of these meetings so today was a big plus in terms of Roger's receptiveness to 'get out and do something' other than stare at 4 walls. He is tired now but he honestly did have a good time - with young and old.
Dianne J: I have just read your profile and am so proud of you and your darling daughter for the way you are coping! She is an incredibly special, resilient person and you must be so, SO proud of her for her magnificent strength and attitude. xxx
Gayle: Glad you getting off to the caravan. When I can figure a way to get Roger up the steps into the motorhome, I'll be taking him off on some mini-adventure! S'pose we had better wait until we see how well he progresses on PCV (which I am dreading!) xxx
Whoopee doo.........it's the weekend again (but we all know in this 'bt world' that weekends as 'special times' just don't exist on any predictable level). For instance, in the last 6 weeks I have had to get the 'on call' doc or nurse to either visit or phone because of one SOS or another.
I thought I'd get a bit of 'me' time today but by the time I was 'happy' enough to leave Roger at the hospice, fought through Cambridge traffic to get home........walked the dog............loaded the washing machine and dishwasher...........vacuumed downstairs and cleaned the bathroom........it was time to get back again to collect him! I got in the car though with great enthusiasm................I just missed him so much! Crazy world us carers live in..............we look for support and when we get it we get all hesitant about taking it!! If you are like me, you are probably a bit 'possessive' of the carer role you have.............wanting to do the best for your partner or child ALL of the time. It gets hard to 'let go', doesn't it??
Anyway, love and best wishes to you all for a peaceful weekend.
Just wanted to say a quick hello. Haven't been on here for ages as have been busy with the big move but have been thinking of you all.
We have now moved from NZ to England and had a holiday in Japan on the way. I'm now at my Dad's and it's so great to see him again. he is much better than last time I saw him. Not as tired and not feeling terrified all the time. he also has his appetite back and his face is much less swollen now that the steroids are a lower dose. It's great to see. Week after next is his last 5 days of temodal. Will be strange feeling in a way when it's finished and then of course there's the wait for the scan....
I'm sorry I have no chance to catch up on old posts right now but will do as soon as I can. I hope everyone is ok. I'm off to bed now as still jet lagged.
