We Talk Brain Tumours

Daisie I am so sorry to hear your sad news. It is wonderful that you looked after him at home and have those memories and know you did it. Sending you strength xx

I just wanted to thank Dianne & Y&Y for your kind replies. Things have been a million times better the last few days. The hospice nurse suggested seeing what boots had (my brain is so out of it right now that hadn't even crossed my mind!). My brother bought some supplies and we are finding the pull up pads with elastic are absolutely brilliant. Life has been much easier since then so long may it continue! He also bought a square pad thing to go over the sheet which is good. The poor washing machine is getting a bit of rest (and so am I!)

We're off to the isle of wight this weekend for 3 nights. Hoping it all works out well and dad has a nice change of scene by the sea with his children & grand child.

Green Tree- glad things have become easier on the pad  issue. Hope your time on the Isle of Wight is good. Enjoy every moment. The memories will be invaluable. x

Daisie, so sorry for your loss.

Yet again there is more sad news when I visit this thread - heartbreaking.

I had my first MRI yesterday since finishing 6 cycles of TMZ.  Not been scanned since August 2nd 2009....so to say I was nervous was an understatement.  The scan doesn't bother me, them finding a vein to pump the contrast in does.  Very bad experience last time.

However, after much pumping of the hand and tightening of the tourniquet....they got a vein.  I made them promise not to hold the needle in the back of my hand like last time - took 3 weeks to stop hurting (I am such a baby!). 

I did however manage to amuse all the other patients waiting for their scans before I went in for mine - its a free service I like to offer - actually it was completely unintentional and caused me a lot of embarassment before I joined in laughing!  I am not very good with accents (coming from Essex we don't 'ave one innit) and I don't just mean "johnny foreignors" I mean all UK accents too - I think I might be a bit deaf   Anyways the lovely radiographer goes through my questions and then I thought he said "you can go and take your bra off"...my face must have been a picture as I replied "pardon!!! I've never had to do that before, its only my head being scanned?".....he looked puzzled and replied "it can be more comfortable, especially with nerves and having to lie still".  At this point he left and I looked at Tony and said "right, you are coming in with me today - I am not sure of him at all, take my bra off indeed"..........now how I could have misheard him from what he really said, I can't explain but apparently the poor fella said "you can go and empty your bladder".......bladder/bra not even remotely similar.  But the two other guys in the waiting room nearly wet themselves (should have emptied their own bladders) when they heard me talking to Tony.

So my radiographer was not a pervert in fact he was very good and although I am really grateful for only having a tiny bruise today - it would appear I am now allergic to the adhesive pad attached to the canula......lovely red angry patch today!  Oh well you can't have everything eh!

So now the torturous wait till Feb 12th begins - I apologise now to everyone for what will be my awful mood in the days to come!

Daisie, I'm so sorry to hear your sad news. What a lovely memory to treasure. I've just re-read your profile and am amazed at what Graham managed to fit in, even with his illness. What an amazing man  you must be very proud.

Sally

Daisie- Sorry to hear of Graham's passing.  rest in peace xxx

I think Mac must have it in for me... Can't find any of my old friends.. hope you are all OK,,

Debs, all fingers crossed for a good result in February.
Some radiographers can inject like a whisper but some like a herd of curious porcupines  - so I have heard.

Quiet weekend, hope people are as well as possible.

MIggins xx

Fingers crossed for you Debs.

Anyone heard from the driver - dont like it when he's too quiet...

Morning everyone

Debs - I think we've said before, the anticipation is horrible, but fingers crossed for you.  They always had problems getting needles into Peter - obviously so many drips and lines over the years doesn't help and more often than not the nurses had to call a doctor, Peter began to dread them having to poke him to find a suitable vein and then was sometimes pleasantly surprised when someone found one first time - I always told the nurses before they started taking his blood that he was a true Yorkshire man and didn't like to give anything away!

Briarwood, I think our driver would be pleased you were missing him and hopefully he is reading at times.  Martyn is having a bit of a break for a while and is taking time to re-charge his well worn batteries.  I know that, like all of us, it's not always the physical caring that is so much of the problem but the constant mental anguish we have to live with, the uncertainty and lack of answers - so as the time rolls on and the prognosis of this awful illness is completely wrong and still no explanations as to what is causing what and nobody in their professions seem to understand the immense pressure we live under each and every day is going to have an effect.  I know I had days where I felt so crushed I didn't know how I was going to continue on but there isn't a choice so had to somehow gather the energy to pick myself up and focus on the care and support I gave Peter. So for Martyn, as Miggins posted previously, 7+ years of caring on your own without support takes it's toll - hopefully though our driver will note his absence has an affect and will be back asap xx

Love to everyone 

xxxxxxxxxxxxxxx

Daisie, I just wanted to add my condolences to those already expressed by others. You have done a marvellous job caring for Graham just as you and he wanted and you can look back on some lovely memories. That won't help the pain you must be feeling now but may do in the future.  xxxxxxxx

Mandy, I think I know how our driver is feeling at the moment.  I can't get the 'average prognosis' countdown clock out of my head this week & I've been feeling so depressed and tearful.  Col has got an MRI scan (that I requested at his last check-up) this Tuesday as it's a year since his treatment finished and I've recently become more and more concerned about him and the amount that he is sleeping.  After another 3 or 4 hours yesterday afternoon, he woke up at about 6:30pm saying that he felt a bit strange and was very cold, despite the heating being on.  He didn't want any food and was then violently sick several times.  He tried to take his normal medications but brought them all back up again.  We went to bed early and he slept until nearly 10am this morning, complaining of a headache when he woke up - he has never had any headaches since he was diagnosed.  He got out of bed and fell back down again but managed to get up and dressed.  We went out to get his prescriptions but when we returned he went back to lie on the sofa and went to sleep again.  He's gone upstairs now, ostensibly to watch something different on TV as I'm watching Come Dine With Me, but I know if I go up there, I'll most likely find him asleep.  Knowing that he has his scan on Tuesday anyway, I'm at a loss to know whether to contact his specialist nurse anyway, or to believe that he may have picked up a dose of some dodgy 24 sickness virus, which I know is going around and leave it till then.  I just keep thinking about how much time has gone past sine this nightmare started and how the time's ticking away...

Sorry to sound so miserable, especially when lots of you are struggling with your own problems at the moment, but I know that people on here will understand how I feel better than anyone else and won't think I'm just a mad, over-protective wife, like some others I won't mention.

Hugs to you all.

Sue xxxxxxx