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.
Bad night last night, hubby said those dreaded words, ' wish it was all over', totally floored me and cried buckets, told him not to dare give up on me, bit selfish i know but as long as he keeps fighting it helps me stay strong. He's in a bit no win situation at the minute his dex is up to 4mg after seizure 2 weeks ago so the pain is back in his legs but he's scared to come down again because the seizures terrify him. Anyway hospital appointment today to start 4th cycle of TMZ and going to try for scan again. Take care everyoneXX
that's hard but it maybe the Dex talking - mood changes when you drop the dose but also in our experience, mood changes when you up the dose and not always for the good - Hope your man levels out and you have a brighter morning - living day in day out with this condition is SO debilitating - keep your chin up xxx
Hello all posters old and new..Much love to you all - Scan day today- aaaaaaaargghhhhhh...
Hope the sun is shining for you and yours and that the day is a kind one to us all . We surely need it !!
Hi, yin and yang we have now applied for DLA and hopefully the carers allowance so fingers crossed, thank you. Unfortunately the month in which we changed our life insurance from one company to a new one was the month Jamie was diagnosed so the cancelled policy basically said tough luck ud cancelled and the new company said you didnt tell us about the headaches so they wont pay out. It makes me feel sick that we could be sitting here with our mortgage paid but instead its a constant worry to both us. My mum says you couldnt write our bad luck at the moment!! Mollie hopefully your husband will rally round, Jamie has moments when he gets upset and frustrated but i think a good shared cry can clear the air, as i feel you can bottle stuff up too much when trying to put on a brave face.x
Hi Laura- Good luck with DLA.Sorry I forgot to mention that if you send form DS1500 (doesnt need to go with the application you can still send it if you have not) the DLA will be dealt with much quicker-maybe in just a few weeks. Otherwise I think they make you wait until you have had the condition for three months and will be a long drawn out process! Dont be worried by the fact that this 'claiming under special circumstances' states that the patient is terminal and has less than six months to live.That is a guidline and sounds really scary but when you have an incurable illness you will qualify.Just get your oncologist or mac nurse to sign the form and it will hurry things along considerably. Hope I havent scared you - just want you to have one thing less to worry about sooner i.e. finances. Maybe you have already done form if so sorry for confused rabble! x x
Just to let you know that Roger is making 'slow' progress. In the last 3 days he has resumed almost full knowledge of the game of cricket and thoroughly enjoyed watching the Ashes with his daughter and brother on Sunday. He made up for being 'awake' most of Sunday by sleeping most of yesterday and today but I'm not complaining as the confusion seems to have lifted a bit.
We've had good support from the District Nurse and the Macmillan nurses - all fantastic! After a blip on Saturday where Roger got stuck on the loo because his legs wouldn't work, things seem to be 'settling down'. We go back to clinic 11th September for Roger's blood tests prior to embarking on PCV treatment. It is now 11 days after the second resection for the GBM and I'm wondering what that blasted tumour has been doing (and will be doing!) in the 4.5 weeks from op to commencement of PCV.
If any of you have any experience of PCV whatsoever this would be invaluable to Roger, I and our family at this time. Initially, Roger did not (EVER) want to consider chemo - especially after his poor liver only tolerated temolozide for 4 short days at the beginning of the 6 week combined radiotherapy and TMZ way back in September 2008. However, now he's had the second op and surgeon recommended commencing PCV he seems to be 'up for it'.
I can't recall anything other than negative stories about this highly cytoxic PCV concoction but I do know that any real experience of it that you can relay to me will be much appreciated by Roger, myself and our family.
I'm kinda new to this thread, but have recent experience of PCV, not so good, I'm afraid but getting better. My husband, R, had an 11 day course of PCV - day 1 was intravenous injection and 1 type of tablet, followed by 10 days of third type of tablet to take at home. He was very nauseous for the first few days but no actual vomiting - controlled by ondansetron, but appetite very much reduced. Tiredness set in almost immediately and he was completely exhausted by day 10. However, he did pick up slowly over the following week and appetite returned. R also suffers some confusion at times which also seemed to get worse during treatment, but was maybe due to tiredness as this seems to have resolved a bit (scary few days wondering if it was the effect of the PCV or the tumour asserting itself). Haven't had a blood test yet, so don't know what's going on there, but R stood up well to TMZ - it just didn't work for him unfortunately.
I must admit I found the last few days of giving R his "poison" very hard and started wondering if it was going to be worth it. Still don't know the answer to that as next scan is still some weeks away, but happier now just to see him picking up.
I hope this helps, but as I'm sure you know, keep asking the medics until you get the information you need. Not all of them (especially nurses/GP) seem to have much experience of PCV.
Mollie, sorry to read that you are having such a bad time, we have been there Martin has been suicidal one minute which is horrible and scarey and very hard to deal with, then the next day he is going to live until he is 100, its such a terrible disease our loved ones minds are all over the place, the opps the rt and chemo and the tumour have such an effect on the brain and as Joan says them dex are a life saver but they come with so many bad side effects. xxx
Joan, hope all went well today at the hospital lots of love to you all xxxx
Laura, you have as much luck as me as I said before as the mortgage is only in my name it does not take effect with Martins illness on top of this I was on the process of setting up a critical illness plan through our bank just before Martin took unwell but never got round to finishing off or we would have been so much more secure, but obviously not meant to be. xxx
Dot, so good hear that Rodger is getting better you must have been so worried over the weekend my thoughts are with you both xxx
Vera and ying and yang hope all is as well as can be with you and yours. xx
love and thoughts to everyone else.
Well bed time for me now I am tired with watching Martin again another day where he has hardly sat down, cleaned 6 cars today from top to bottom and most of the house too, god only knows where he gets all this energy.
Roger doing OK. Slept most of yesterday though so I got on with some of the mundane paperwork. The district nurse called again armed with pads and convenes. I reassured Roger that he'll probably never need them but that its good for us to keep them under the bed.........just in case. He's had a couple of 'accidents' but I'm hoping that they were just a 'blip'.
VeraB: thank you so much for giving me this honest and balanced evaluation of PCV so far. I know what you mean about finding it hard to give such a toxic cocktail when you know it's making your hubby feel so ill. I'm a trained holistic therapist so always vowed I'd never have chemo but, now I'm in this 'place', I have to go with Roger's wishes to try it and the doc's recommendation for him to proceed. Unfortunately, Roger only managed 4 days of temolozide in the first place due to liver sensitivity so I am still waiting with 'baited breath' to see if he can tolerate the PCV. The hospital are reluctant to have another go with the temolozide as the sensitivity Roger's liver showed last time is almost guaranteed to occur again so they don't want to take the risk.
Gayle: If I send the train fare, can you please send Martin down here for a week??? I've got loads of household chores for him and the car hasn't been cleaned for a month!! ;0)
I've noticed a bit of an autumnal feel in the air this last couple of days - I just hope it doesn't come round too quickly. I am depressed enough without thinking of the dark nights and cold mornings! I am missing work and very lonely with Roger sleeping so much. I just don't have the 'energy' or 'enthusiasm' to do stuff like cleaning most of the time but I try my best to keep the place presentable. (I never used to be like this - I was the "Penelope Pitstop" of our family).
Hope you all have a good or, at least, peaceful day.
Thanks everyone for your replys, Saw oncologist yesterday to start 4th cycle of TMZ bloods ok so can go ahead with it. Still a bit peeved that they still won't give him a scan still saying to wait until after 6th cycle of TMZ but after last seizure that is no comfort, i had a bit of a winge about our usual oncologist not seeming to give a damn know it won't do any good but glad to get it off my chest. Hubby was still very snappy last night but seems slightly better this morning ( find out better when i get home from work ) so hopefully he'll pick up again as we're going away for the weekend. Take care
Dot, Reading your post again reminds me so much of myself, I have no energy or desire to do anything, most days I sit on the laptop trowling the net playing silly games on facebook all because I cant face normal day to day activities, thankfully Martin has so much energy or our house would be a tip. Each day that arrives I am slowly feeling worse instead of better, I too miss my work my friends lots Martin feels insecure when I go out without him, I get so lonely and bored this illness is the worst I have ever came close to, it has robbed us of everything normal, although Martin has energy its not on a normal level he scares me and no one else understands not even our gp who says this is normal behaviour for a brain tumour patient there is very little help and support available without my counciller I really dont know where I would be, sorry to rant on I am so grateful to have Martin with me as manyof my dear friends here are not as lucky as me but some days are just so difficult as you know. xxx
Spoke with Julie and she passes on her regards to you all, she is finding it difficult to post at the moment as she is missing Stephen so much love to you Julie. xx
Mollie, hopefully your husband is better again today. xx
