We Talk Brain Tumours

What a nice story TG. Maybe a tradition for the train eh Martyn?

It's very cold and some snow is still about - just the sort of day to go to the beach! But if it's too cold we'll nip into a cafe for a cuppa.

Best wishes to all reading
Miggins xx

Crumbs ... I know Martyn hasn't responded to TG's post - he's off down to Wilko's to buy a job lot of red knickers - Robin and Martin beware!!  Great tradition though TG - doesn't seem a thing a muslim country would be doing though hey - all the more funny! 

Debs - life doesn't get easier does it - your post just made me smile at how determined you are - I have to add that you don't necessarily have to have a BT to put things where it shouldn't be, I'm a dab hand at misplacing things - putting them somewhere safe, so safe I don't have clue where I've put them - took my sons car keys off him recently to prove a point, put them somewhere hidden but when he was forgiven where were they??  Turns out I'd given them to his sister incase she needed to move it when I was out - very organised if only I could remember the whole thing!!!  I hope your headaches do turn out to stress related, rather than BT - but as Martyn asks about other pain meds, Peter used to take morphine slow release and now takes oxcodone slow release instead (stronger than morphine) and also takes paracetamol 4hrly.  It might be worth just asking what your options are?

Peter has returned home today - hurray!!!!!  But though he hasn't ventured to the outside bins yet, I think the sight of snow put him off, just a flurry (love that word by the way) - he has sorted the bin indoors, he then got his tablets out and we HAD to do his weekly dispenser there and then, he emptied the washing machine and put a load on, unpacked his hospice case and generally faffed about pointing things out - then was so tired he struggled to eat his lunch and was falling asleep (none of this in the hospice these past few days) - intense headache and had to have pain meds and his wheezy chest returned - but I had to keep him up as he had an appointment for an injection, so on our return he is in bed sleeping - I've told him off and told him I feel very frustrated but on one hand I don't want to knock his determination out of him and encourage his independence but on the other I know he is going to be set back by all of this - need to find a middle ground somewhere - we'll see, I'm not holding my breath!

Suppose I have to go and do those housework jobs that I've been putting off, see you after I've finished having my hands down 4 toilets - life is wonderful!!!!!!!!

xxxxxxxxxxxxxxxxxxxxxx

I'm not at Wilko's,  I'm at East Midlands airport waiting for the next flight to Istanbul.

TG,  please don't start without me!

Darling XXXX

Mandy, thanks for sharing Peter's fascination with the rubbish with me. I'm happy to hear he's back home with you now. You do an amazing job and I often think about you.

I thought I was so smart unplugging the waste disposal, but he has now decided playing with the water in the shower is fun. He was taking a shower at 2 am this morning and is back in it now. He's been in there for ages, so I better go in and see what he's up to. May have gone to sleep in there.

XXXX

Whoops sorry, pressed enter.
xx

hi guys

when i close my eyes in the shower i have a few seconds of dizzienes , just a few ... i blame it on the rt . anyone else ? ... 

Hello Johnny, It's so hard to say with very general symptoms isn't it?
So many bt symptoms are also typical of other illness - makes the buggers hard to recognize - dizziness and raised bp for example.
Stay vigilant though, falls in the bathroom can be nasty.
Best wishes,
Miggins,

Red Knickers, Terrys Chocolate Orange, Oh my word this thread is certainly back as it used to be. Read postings regularly but no need to write as the train crew have everthing pretty much sorted.

Martyn - Dad sends his regards and we both hope Doreen is doing ok and is keeping a watchful eye on you through all this frivolity.

Love and hugs to everyone reading this much needed thread

Allison xxx

Evening all,

It is so nice to see the "old" sort of  posts again with their wonderful mix of humour, sadness, friendship and advice and of course it is always good to see some positive news.

Robin, I do hope that the new medication brings some improvement in Jan. I must remember to make a note of the drugs you mention as no doubt a time will come sooner or later when Paul will need further medication. We've already been told that avastin won't be available and when the time comes I'd like to be able to have some information about what drugs are used in other parts of the country.

Mandy, you must be so relieved to have Peter home again with you. I doubt that the time he spent in the hospice gave you much in the way of respite but it sounds like it helped get some of his current problems more under control.

Daisie I don't think we really know each other as I haven't been coming here much recently but after reading some of your recent posts, I felt an immediate affinity as it sounds as if your man and mine have much in common. I had to smile when I read about his nocturnal antics (and about Mandy's Peter's obsession with sorting rubbish!) It seems as if all of our loved ones get their own very different quirks. Paul's are mainly to do with food. He was always a fussy eater but he's become much worse in recent months and I can't always keep up with some of the changes in relation to what he will eat and what he no longer likes.  We also have some "interesting" issues about how he dresses. He doesn't seem to care how he looks now, refuses to wear underpants so insists on going commando and because he also wears his jeans quite loose (because he can't manage buttons and he puts them on and takes them off with the zip done up and button fastened) we get an awful lot of "flashing" of the non Christmas lights variety in our house! It's ok most of the time when there are just the two of us but both of my girls will be here between Christmas and New Year so I'll have to be on extra vigilant unzipped fly patrol!

We are nearing the end of the new (short) course of radio therapy, thank goodness. Two more sessions, one tomorrow and the last one on Monday. Unlike last year when he was on the combined RT/TMZ regime, the timings for this course of RT are all over the place and I think Paul finds it rather unsettling because he can never remember when the next appointment is no matter how many times he asks me. It's also more disruptive for me from the work point of view but that can't be helped. Paul's treatment has to take priority over anything else. When I got home from work today he seemed a bit "off " and when I asked him how he was, instead of the usual answer of fine, he said that he had been "a bit wobbly" today. Naturally, I'm quite worried about that but I was wondering whether maybe it was a reaction to the RT. I wish I could remember more about how he was in the early stages of RT last year. I was in such a state then and so much of what was happening seemed go by in a blur. It makes me wish I had recorded more detail in my profile so that I could refer to it now. I do remember being advised that with RT, symptoms tend to get a bit worse before there is any improvement but on the other hand, the migrated tumour was on the outer covering of the brain and I think the Onc said it wasn't in an area that had any control over balance and co-ordination so of course I can't help but worry about whether it means regrowth in the original tumour. I'm going to ask to see the Consultant tomorrow after the RT session at 3.15 pm

Goodness, this is turning into one of my saga posts so I'd better finish off for now. Before I do, I mustn't forget two of my oldest friends: CH, good to hear that Bluebelle is keeping you company. I wonder what she will make of the snow? Love to you, my friend and also to Martyn. I'm sure you've told the taking Doreen to the tip gag before but it still made me smile and I guess it just shows that in terms of my membership of WTBT, I'm getting a bit long in the tooth!

Love to all,

Sue

xxxxxxx

Mark had syringe driver fitted today so he is pain free and sleeping peacefully. Family coming tomorrow rather than later. Off to cuddle my gorgeous hubby. Night night x x