We Talk Brain Tumours

Wow! Thanks SO much again for all the detailed info Ann it's been a real help already as mum has read a copy of most of our messages and it's helping her come to terms with what she needs to do next. I still don't know whether she's ready to make a real decision about actually asking someone for help, when this should be and for how long. But i'm hoping i can persuade her to start with a trial day or few hours and go from there.I wish there was more spontaneous checking up coming from whoever is supposed to be looking after his care GP/hospital wise. I feel it would be so much easier if a professional was to keep in regular contact and offer her help instead of her having to seek it (which is'nt really working right now).

My experience of maternity care from the NHS was fantastic, from the minute you breath the words "i think i might be pregnant" to well after the baby's born everything is taken care of and you get so much help, advice, care and time. I don't understand at all why it can't be the same kind of experience for people suffering from such a difficult and painful disease.

Thanks, Loretta x

Hi Loretta

I am so pleased to hear that your Mum has read the post.

As you say, maybe trying care for a few hours/days will get her into the routine and to meet some really nice caring people.

We had daily contact with our District Nurses and I could call them anytime night or day.

Perhaps this is your first port of call - start getting a DN to come in (again they don't have to come every day at first) but have the numbers so your Mum can contact them if she cannot cope at anytime.

During the night time the oncall DN came from our local hospital.

They can also help with personal care if your Mum can't manage it when accidents happen.

I think the essence of this is getting the support around you all and knowing who to call.

Our experince - very frustrating as tehre is alot of help out there but it is knowing who to ask and who does what.

Our diabetic nurse at our GPs's said if you don't ask you don't get!

If they think you are coping they will not approach you - you have to approach them.

These were my thoughts to, when you are given a diagnosis like this, especially with a terminal prognosis everyone should be asigned a case worker who deals with everything so you have one port of call.

A job for us I feel!

Take care Loretta - give my love to your Mum aswell from someone who knows what she is going through.

Lol Ann x

Hi Loretta Again!

Our very first night carer was someone who was very special indeed and I was so grateful that she cared for my husband and me aswell.

She has also become a very good friend to me since Steve passed away.

Take care

Ann x

Ann, if I may just say? you are doing a fantastic job. Thank you from us all.

I find it difficult to offer support at the moment, but try to catch up whenever possible. I will try to visit more often and do my bit.

Did anyone happen to see Wild At Heart on ITV last night? It involved the actor Warren Clarke suffering a GBM. It was quite obviously very badly researched and in my opinion an absolute disgrace. He decided to stop taking his steroids, walked out into the wilderness, lay down and peacefully passed away. Quite ridiculous. Well that's that off my chest!

We send our very best wishes to all passengers, old and new. Doreen and MartynXXXX

Back again!  I feel so strongly about the content of last night's programme I have registered a complaint to ITV.  Copied below.

This is the first time I have written to complain about a television programme, but the programme content incensed me last night.
My wife suffers a brain tumour and I have done much research into the condition. It seems glaringly obvious that research was sadly lacking from your end, it doesn't work that way and it would be quite wrong for sufferers and/or their carers to be misled so.
To stop the steroids, walk out into the wilderness, assume a comfortable position and peacefully pass away is nothing short of ridiculous.
The final stages of GBM's can be horrific even with steroids, morphine and anything else the medics consider an aid.
I will not go on, but when you include any terrible illness in future programmes, please, please do your research.
Regards,
Martyn Elvin.

Hi Martyn

Your reply really meant alot to me - I know that alot of 'oldies' on the train still read but I fully understand that it is difficult to offer support - I went through it too but now find that I can start supporting again.

I am home at the moment so come on often because I get fed up with the TV.

With regards to the programme last night I do not watch it nut Peabs complained aswell - I beleive she put a post in Glioblastoma Why Why Why.

Sending you both my love and support

Take care

Ann x

Oh Martyn, glad I am not the only one who is outraged at the most ridiculus portrayal of a BT patient I have seen so far on TV (and I've seen some laughable ones already - Bones in particular).

I had to be careful though as my whole family were watching and my two youngest are not fully aware of my situation - a need to know basis.  But I was screaming on the inside and talked to my hubby about it after.

Who do they consult when introducing these medical conditions?

Flabberghasted and I really like this programme

I have also emailed ITV as I could not believe the way it was portrayed that steroids hold it at bay, my daughter was on the highest dose when she died on the 26th September. I can't write more as I am not in a good space right now but think of everyone who has this awful thing.

Regards

Sue

This is the email I sent to ITV today. I wrote it hastily - and in anger - and probably should have stopped and thought about it before sending it but I didn't. So, here it is:

Well done Deli, Sue and Martyn.

ITV have done such a diservice and shloud be thoroughly ashamed.

Love to you all.

PEABS XXXXX