We Talk Brain Tumours

Hi Ann - well found and lovely to hear from you x

Good to hear that you have managed to get through and can actually see a way forward - a year is still such a short time for you, look after yourself xx

Ann, lovely to read a message from you. I can  hardly believe it is a year ago that  you lost Bob. I remember so well your mails about the sisters and the washing up. I hope teaching is going OK and helping you get through the difficult days. xx

Sue, What a disappointment. But do go in for all guns blazing for more chemo. We were also told that B couldn't have more rt because the new growth was so close to the first area. Even though a lot of time had elapsed the reason being that more rt to the same spot would cause too much edema.

P responded well to tmz so they should try it again and not assume it has stopped working. When B had regrowth a year ago tmz taken 21/28 days worked well for him. Another option is one week on, one week off, we are on that now. Or PCV? It can be harder on the blood but it's still a good treatment. Sometimes one part is not included as the two other parts seem to be the most effective but I can't remember which is which.

It's a blow but I know you will dust yourself down and go in there guns blazing for P. xx

Hi Mandy,

Hi Martyn

Hope everyone is as well as can be today.

Best wishes,

CHxx

Hi Susan,

As Mandy says, you have had so much to cope with this year and I really thought things were going to take an upturn from today, I am so sorry.    I admire so much the way you have coped with your whole family situation and the dignified manner in which you always conduct yourself. Doreen and I are very pleased to have met you twice and proud to be your friends.

Lots of love and best wishes to you and PaulXXXX

Hi Ann,

Hooray the gang is getting back together albeit rather slowly, did you have to recall your Girl Guide map reading skills to find us?

I still vividly remember receiving your text message on that terrible day last year, we were having a break in North Yorkshire. I am so pleased that you can at last see a flicker of light ahead.  We will chat again very soon my friend.

Lots of love,

MartynXXXX

Hi Sue, sorry to hear the news about Paul, even if you are half expecting it, it still knocks you :(  I hope the swelling goes down soon- it's funny what things they do and don't tell you in hospitals and also what things they don't seem concerned about, even when you might be really anxious about something.  Guess they know what they're doing...........

Ann- Nice to hear from you- I can not believe it has been a year- it has gone so fast, but also so slowly- funny old thing time. I hope you are keeping alright XXX

Susii- Sorry to hear the sad news about your friend.  Hope Col is doing ok.  How is school?- I am counting down so desperately for half term.  Although I like getting my extra prep time as an NQT, I feel like I am learning so much so quickly, it's crazy.

Hi everyone else :) Hope everyone is doing ok

love Ali xx

I managed to catch  Channel Five news at 5.30 today.
Apparently there is a competition to find Britain’s kindest kid!
Today’s featured child was 9 year old Harry Moseley who has a brain tumour. The tumour is inoperable due to it’s position and depth and has not responded to chemotherapy.
He and his friends make and sell beaded bracelets with the proceeds going to Brain Tumour UK.
Harry visits schools addressing assemblies explaining to the children his condition and his aims for the future.  Some child eh?
Best wishes to all,
MartynXXXX

Evening all you wonderful peeps, below is a link to Harry and his story on youtube if it works xxx

http://www.youtube.com/watch?v=Bf8dT9Rdk-Y

It seems to work if you copy and paste into your browser x

Well, that had me blubbing, doesn't take much these days - life is so cruel xx

I have a question, please. When people talk of "regrowth" does this normally mean further growth in the original tumour site or in your experiences is it common for the GBM to spring up somewhere away from the original site? Paul's medical team were talking as though he had a completely new tumour, it was even suggested that it could have been a benign meningioma. Obviously we know different now and I always thought it was too much of a coincidence that there could be a new, unrelated tumour on the outer surface of the brain directly above the original deep set GBM. I also know now, after asking the neuro surgeon, that the cells from the original tumour can migrate along the track left by a biopsy and at the moment, I do feel pretty annoyed that we weren't warned that this could happen. I'm not looking for vengeance and I certainly don't blame anyone for the fact that in Paul's case we do appear to have had tracking following the biopsy. I can say with absolute certainty that if we had been warned about the possibility of tracking, we would have gone ahead with the biopsy anyway as I know that they needed confirmation of what type of tumour it was before they could decide on treatment. Like with the post-operative swelling/puffiness round the eyes though, it would just have been nice to have been warned about it.

Sorry for the mini-rant. Goodnight all.

xxxx

Morning all

What an amazing kid that Harry is.

Susan, sorry to hear about Paul's regrowth. When Jan was in hospital in August I spent some time with the NS going over the MRI that he had requested and comparing it to the one done in July. He pointed to a few tendrils coming away from the tumour site and felt certain that these were not blood vessels as, to the trained eye, blood vessels look different. On the basis that Jan never had a biopsy it is, I think, evident that tumours do not need a biopsy track in order to migrate around the brain, that probably just makes it easier.

I do not think that the medical profession tell their patients everything for two reasons. One they just don't have the time and two if they did we would probably give up day 1 on the basis the shock of the forthcoming reality is too much to cope with. Annoying as it is sometimes I can sympathise with the release of information on a need to know basis. Having siad that, posters and readers here (WTBT) are unusually well informed; amazing what a co-operative can do ! (or should  I say train enthusiasts).

Most of us here have had a gradual, albeit fairly steep, learning curve on BT's. I share an office at work with an old colleague and friend who has two brothers. One has had two tumours removed from his throat this year; the other has just been diagnosed with an aggressive BT (as yet unspecified) across the back of his head together with a secondry growth. Unlike me he has been laerning about BT's for two years from the moment I had news that Jan had a BT.

Right - best get on with the day, there's food shopping to do and tennis lessons to have; not to mention the washing, housework, gardening, deocrating and even washing the car if it stops raining for five minutes!

Love to all - Robin

PS - Mandy, your "brill" what a stalwart you are. (Hope I spelt that correctly).