We Talk Brain Tumours

Hi Jean

Sorry to read your husband is not so well.  We will be around for you and others, we're not completely jumping ship, it's just that we feel we aren't keeping the same contact with some of the 'old' posters - so don't think we will leave you behind (so others know, you haven't got FB) as we all want to give as much support to everyone we can. 

It would be selfish of us to completely disappears especially after people such as yourself have given us the support and acknowledgement we have needed in the past - for that I am grateful.   In any case Share was such a big part of our lives it would be difficult for us (I speak for others, sorry) to move on just now.

I am going to be speaking with Admin personally today so hopefully we can get some things ironed out - I think I will have to write down some of the most frustrating things as I am prone to rambling on!  You may have noticed - and I know you would miss Martyn's humour hey? 

Jean, like I say we're here to support you - and I am so sorry Paul is struggling.

Take care xxxxxxxxxxxx

Hi there,

Lovely to hear from you, very comforting to know you are still around. We had our first visit today from a Hospice At Home nurse, she came from 8am till 12. She was really lovely and very supportive but felt a bit strange having someone here for that amount of time. I suppose its like most things, just takes time to get used to it.  We all have to get used to quite a few things don't we, mostly things we'd rather not have to get used to!

Paul is very sleepy but mostly calm and relaxed so for that I am thankful.

Hope all is as well as can be for you all.

Love

Jeanxx

Hi Jean

Yes, understandable that it's strange to have a stranger in your house.  We have had various people over time come into our home - it's not easy, especially at first - it's obviously normal to feel uncomfortable about this but I'm sure it gets easier with time - hope so anyway as we haven't much choice sometimes have we!!??  The main thing is that Paul is getting the best care so you can rest easy as all you want is for him to be comfortable with everything.

I have been in touch with Mac and I am writing a post after this post - I hope it reassures you that we will still all be around - take care Jean, xxxx

Hi Everyone

Today I have had a telephone conversation with Thomas from Admin - he was very kind and helpful and we agreed I should post something here so you can read what was mentioned - sorry it may be long!

The We Talk Brain Tumours thread from Share hasn't been transferred over yet as there were technical difficulties with one of the orginal first posts.  They are now actively trying to sort it especially when I pointed out various points to him, some of which are below.

Thomas said the way inwhich we used WTBT was unique when compared to other threads, which tend to be very short and then a new thread start - but did say that we were to continue to use it as we saw fit.  He acknowledged it was a very popular thread and now certainly understands the importance of it.

Together we discussed the navigation of the site - as far as WTBT is concerned admin are going to try and put it into the 'Brain Cancer' group with the other BT forums.  This will take some time but eventually it will be easier and more logical to find.  It would mean we would click on 'forums' then on the 'group box search' - scroll up to Brain Cancer where WTBT would be located.

Thomas apologised that an error had occured with regard Share - at the moment if you attempt to go to the old Share site there is an error screen that comes up - they are going to change that quickly so that a link to this new site comes up so that old members can find their way here.

We discussed other issues, such as the difficulty in navigating - Admin acknowledge this and are looking into having smaller menus come up, so for example, if we clicked Forums then a small menu will come up to help us navigate to where we want to be and this would hopefully be across the site.  Admin are currently altering the difficult emailing process and I suggested that people should 'opt in' rather than have a page full of information - or now that the site is up and running this may be difficult to change so we could have the choice of 'hiding' different parts so we can choose to have things as easy or as detailed as we wanted.

I also pointed out that although the green 'reply' button was useful, choosing 'quick reply' was frustrating as this brings up the big white/grey box in front of all the posts and that many of us like to respond to more than one post in a reply - he said they will address this point.

I mentioned 'the wall' - he agreed that it was badly labelled/navigated to and will look into this.

I made it clear that we don't have the time to sit clicking about the site, that it was difficult to remember what we clicked on to get to another screen and so on, that all we wanted was ease and simplicity, that many of us are poorly and so don't have the energy to relearn all the time and others of us are caring with many stresses and often not much extra time.

Thomas was very understanding and gratefully received all this feedback.

I hope this of use to you and although Thomas said these were relevant concerns things will take time, he said there will be bigger chances over the next month - so all I can hope is that if they make some or all of these changes our lives will become easier.

Finally I hope you appreciate the update

Take care xx

hi jean

yes it us strange to have someone in the houae. but you get used to it. and mac nurses are almost certainly trustworthy and keep things in confidence. i have someone who helps round the house 3hrs a week. and when i was ill she came more.  she is more like a friend but i think i am lucky because some agencies are not so good. but what matters to me is she comes on time and is trustworthy and a nice person. after that all else is secondary.hope you get on well.

Well done Mandy and thanks for the update.

xxx

Well done Mandy, I'm impressed.

Hopefully normal service will be resumed as soon as possible?

XXXX

Hello and I hope I am posting this in the correct place but was wondering if anyone might have a little advice for me.

My mother aged 66 has Glioblastoma Multiforme, she had surgery on 2nd Sept 09 where 90% of the 'small orange' sized tumour was removed.

From being totally confused, vomiting and with severe head and neck pains in the morning, occasionally falling over and unable to walk unattended she made a remarkable recovery post surgery and was sent home 2 days after surgery and was walking a mile a day unaided,with all her faculities back again.

Last week Tuesday 29th Sep we made our first visit to the local Oncology department where we have been planning her radiotherapy and Temodal treatment which is to begin on 21st October ( the length of time between her surgery and start of RT seems such a long time, is this the usual amount of time to wait?)

Last Thursday 1st October my mum had a seizure, she wasn't hospitalized but was prescribed Tegretol Retard.  During the last week since about the time of the seizure she has declined rapidly, total confusion, not knowing what day or time of day it is, sleeping a lot, and today she fell over, identical symptoms to how she was just before she was diagnosed.

I am just wondering if anyone knows just how rapidly Glioblastoma can grow between surgery and the start of RT and whether you think her symptoms are tumour regrowth or related to her having the anti seizure drugs.

I phoned our GP today who has ordered an urgent CT scan so that the situation can be looked into again, I am glad of this as I would hate RT and Chemotherapy to begin when there had been such a massive change in such a short time as I don't know how she would fare.  Is such rapid decline in GBM patients a common factor at this early stage?

Thank you so much for your time if you reply to this and sorry for such a long rambling post.

Fee x

Hi jean

Having someone in your home can be a very strange experience, we have been living with carers coming in  to help me for many years now. We use a care agency and have PCT funding but are lucky to have had the same carer to come in for many years. You may find that you both connect with one particular carer and it may be that that carer will be available to you and that does help to make your home feel more relaxed. Our regular carer is used to seeing me in pjamas and everything... warts and all.. and takes it all in her stride, she is now a good friend.

Thoughts are with you xx

Thank you Mandy for you speaking to Mac Admin, I imagine many are very grateful xxx