We Talk Brain Tumours

Thanks Peabs xxx youve got so much on at the moment some wont insure her for 'the condition' one company wants 500£ and £1000 excess!!!

Take care thinking about you Love Di xxx

Hi Everyone

Di, I was given this the other week by the hospice doctor when I said I couldn't get travel insurance for my daughter because of her bone tumour - she toddled off and gave me this - I've not done anything about it but obviously the hospice doc knows about these problems - anyway enough waffle, just incase it's any use:   All Clear Travel Insurance  -  www.allcleartravel.co.uk  -  0845250 5200. Hope it does what it promises so you can go and have a wonderful time xx

Peabs - thinking of you xxx

Take care everyone x

Hello again Fedup1,

Yes, steroids can be the devil in many ways and it certainly can cause those potential side effects you mentioned but dex can also be a life-saver and is the only thing that will expel (sp?) excess fluid from the brain if it builds up and starts to cause problems.
You probabl y know but the brain has a super effecient blood/brain barrier that protects the brain from many infects and the like and many drugs cannot cross that barrier. Dex can quickly and easily and can work very quickly. Sadly it's not a cure-all but at the right time can be transformational.

With tumours in other places fluid is less of a problem but of course in an enclosed space such as within a person's skull, it can do damage by building up pressure. Still, I'd be wary of upping and down dex too much without some medical supervision - certainly down should be quite slowly.

It's hard to second guess platelets and that your Dad has bruises will make you wonder of course. We always had a good idea from how quickly the needle hole healed when they took the blood to test.
But especially is someone is a bit wobbly on their feet they can get bruises easily so try not to worry too much about that if you can help it.
We tried eating black pudding and liver but I know you can't affect the count like that but at least you can feel you are doing something and that is quite an important feeling to maintain.

Hope your Dad continues to have many many times. Keep on talking here, it does help to get rid of your fears and sometime share others' experiences to give you some insight - though everyone is different.

Best wishes,
CHxx

CH has akready given a good answer about the use of dexamethasone. For us it has literally brought my mum back from the brink of death now twice - not sure whether we'll be lucky a third time. The most useful thing that i have read came from the Brain Hospice website where there is a page about the use of steroids and changing the dose on a regular basis.

Clearly my hand/eye coordination was very off when I was writing that last message! But I guess you get the meaning OK.
CHxx

Thanks Mandy

xx

Di, It was All Clear that insured Christie when she went to the States.

PEABSXXX

Dear Katie

Have just been reading your story and it struck so many painful chords.  I am sorry to hear about your dad.  If you get time please read my profile as I think we probably have a lot in common.  If you ever want to chat I am here for you.  You might not always get the answers you want here but you will always get 100% support.  Human kindness comes in bucket loads on this forum and it will help you get through.

I haven't been on here for a while but do read the posts from time to time.  Dad's 6 weeks of r/t is over now and I have been enjoying time with him as he felt well enough to pay me a visit so that has been great.  Other than tiredness and a "muzzy" head as he calls it his r/t hasn't been too bad.  For this I am eternally thankful.  He should start 6 cycles of chemo on 20 July.  Another hurdle to get over!  His physical health is pretty good and he is super determined so hopefully things will continue to go well.

My thoughts are with you all, big cyber hugs from Southampton - stay strong.

XXX

Hi Dianne, we went with mia online. They were the only ones who would cover Sam and include her BT. Others would insure at a price but exclude BT and we felt unsure travelling under those conditions. Mia online were £253 for 5 of us on a cruise (insurance is more expensive for this they said due to confined areas causing more poss infections.) They would not insure until 8 weeks before trip (a problem if you have to pay for your hol before you can insure!) but only required a note from the consultant to be put on the hospital file to say that the patient is fit to travel. No blood tests etc. Worth a try.

Maggie

Hello all:

Some of you know I parachute in every once in a while from across the pond and  today I was horried to find you on page 3 so I thought it was time to drop in!

My profile says it all but in brief my twin sister, almost 60, was diagnosed with primary central nervous system lymphoma in 2007 and after heavy duty chemo and whole brain radiation is still plodding on.  But this post isn't about Sue.  It's about Jim, her faithful caregiver who has selflessly cared for her through tests, investigations, treatments, therapies, more tests (you get the idea).  Last week he was rushed into hospital with heart problems and has undergone some unpleasant invasive procedures to relieve the pressure on his heart.  Happily he's doing better as the doctors caught the problem in the nick of time.

The moral to this story is:  you dear carers - please do NOT neglect your health.  You are doing an awesome job and have incredible pressures to deal with.  Please do not ignore what your own bodies are telling you.  I don't know if a study has ever been done to assess the mortality rate of partners who are having to deal with serious cancers like brain tumours.  But I ask each one of you to look after yourselves (and I include you Martyn, so don't skip this), and to make sure your health is also being monitored.

You are an awesome group and I wish you well.

Jill