We Talk Brain Tumours

Hi Sallye

Peter goes to the hospice each week - they have a counsellor there - I tried her but she got on my nerves - kept asking the question 'how did that make you feel?' - I wanted to answer how the bloody hell do you think it made me feel, but too polite I'm afraid!  Anyway P's day hospice nurse retired but started voluntary counselling at the Cancer Care (complimentary therapy charity for patients and family) - for me it is the right person - she presses my buttons and I do cry but it's definitely positive - she says basic things like 'it's crap isn't it' - she keeps it real - and also since she knows P she understands my situation with regard him not being able to communicate.  So really my best advise is maybe to try counselling from the hospice as they understand the illness, but if it's not right don't continue wherever you go, try someon else because when you find the right kind of counsellor it will help, honestly.  It is something I've been told that there are different ways to counsell and it's finding the right one for you.  Not sure this is much help really, maybe just a pointer in the right direction????

Good morning all,

Allison,

So glad you made it and I must say the train has a lovely sparkle about it, not seen that for ages.

I think when Mrs Miggins eventually rises you can have an extra muffin, she also has extremely nice buns!

You don't need to travel far for personal counselling, last carraige on the left.

best wishes to all,

MartynXXXX

Martyn your post about prognosis was DEFINATELY encouraging, I was told in Feb 2.5 to 3 years but all along I have told myself I AM NOT A STATISTIC.  I am aiming for 5 because that would see all 3 of my children out of secondary school...then I will set myself another target.

Ashamed to say I am dreading my bloodtest today - total whimp - bizarre because I was a regular blood donar until Buttercup made an appearance!  Brain surgery a doddle, bloodtests ...... NOOOOOOO!  Think its because my veins have moved to Siberia since starting the Temodal.

Have a good day fellow headcases and carers of headcases

Debs, hi, good for you having that attitude - though I know it's the only one to have - we're all here to try and support you - hope your bloodtest isn't as scary as you feel - P has the same problems - it's quite amusing seeing how many staff it takes to get some blood - I'm always saying he's a true Yorkshire man, doesn't like to give anything away! x

Debs, good morning.

If I may just add a couple more points which you may be well aware of anyway?

As the brain is made up of approximately 75% water, I have always encourage Doreen to drink quite a good amount, unfortunately we can't pursue that at the moment, but I believe that it helps refuel the brain, maybe it has done some good, will we ever know?

If you feel tired, have a rest, give your system time in the day to slip into neutral for a while.

Steroids, dexamethasone? please make sure that you exercise your limbs as much as possible as muscle wastage can easily occur, we know this to our cost!

Hope all goes well today.

Sorry if I'm TGTSE's.

Martyn

Martyn,

Firstly what does TGTSE's mean? Sorry not come across that acronym before. 

I am not good at drinking lots - even on my chemo week....I try but apart from my cups of tea, I fail!!!!!!!!  Thankfully I have been off the steroids (dexamethasone) for a few weeks now - the weight is NOT falling off me much to my annoyance, but then I still eat for England

I walk to the supermarket everyday to get what I need to make dinner, otherwise its just a short walk with the dogs.

Thanks for your input.......anyone volunteering to go and have blood drawn instead

I'd volunteer Doreen, but unfortunately she's just a little bleeder.

TGTSE's?

I'm sure some of the more, her hmmm, senior members on the train will be able to tell you that.

Where is that Mrs Miggins anyway?

MartynXXXX

YIPEEEEEEEEE! I think I have found you all at last.Oh how I have missed you.Just to say I am a dab hand with a duster if you are short staffed MARTYN.and many years as a barmaid I give good measures on the drinks front,allso mix a mean cocktail when required,xx

Hello, I am a carer (husband).  My wife was diagnosed with breast cancer in January 2007, did the chemo, mastectomy, radiotherapy stuff and moved onto Tamoxifin/Zolodex thereafter.  She has just got the news that her cancer has returned in the brain.  At the moment she is on steroids but they don't seem to be having much effect.  She has a permanent headache, always tired and frequently nauxious despite the steroids and anti-sickness drugs she has - at the moment is scared to go to bed because it is much worse when she wakes up.  There must be a way in which her quality of life can improve?

I am hoping there are other people/carers who have been on this journey and can give me some advice on how to provide the best possible support for her.  She is scared, in pain, and has an uncertain future - for me I need to know how to ensure there is some quality of life she can still look forward to (hopefully) 

Thanks in advance.

Hello sd, I'm sorry to find yourself here, I don't know anything about secondary bts I'm afraid but I'm sure some of the others may.

More generally though the dose of the steroids (dexametazone?) may need to be adjusted/raised to cope with the icp - inter cranial pressure that will be causing the morning headaches. Is any more radiation of chemotherapy possible for your wife?

Hello China Doll, good to hear from you and glad you have found us. Hope you are doing OK at the moment? xx

So, here is Mrs Miggins reporting for duty - glad to see our train sparkling. Of course my muffins are excellent! Don't know that acronym though - Debs he makes them up!

Hope everyone is OK. (Can't remember who else has posted as this new site only displays one message grrr!)

Love,

CHxx