We Talk Brain Tumours

My my it's been quiet on here today!

Mollie, glad you made it across.

Best wishes all - Robin

Hi All

I wonder if you'd mind if I join your FB group please?  If so, what do I need to do?

Thanks x

HI Nerek,

I'm going to try to send you a Mac friend request.

CHxx

I can't believe I found you all again, I had only just joined and started getting into the swing of things and then nothing what a nightmare.

hi everyone,

I have been advised by mandyr to join the group. My mum has been diagnosed with a brain tumour which has spread to some of her organs. I have found the whole experience overwhelming and dont have a lot of family to help me and mum along the way.

My mum has a very short fuse at the moment.....I think this is a result of the Chemo and Radiotherapy. Does anyone have any advice on helping with dealing with that?

I am hoping I can find some assistance and provide any advice or help to others along the way.

Thank you for reading my post and I hope to be in touch with some of you in the future.

Love to you all. Lisa Sxx

Hi Nerak, I've sent you a private message.

Best wishes, CH

Hi Turkishgirl, good to hear from you again. It's a shambles this site isn't it? Not to mention s-l-o-w. Hope things are Ok with you?

CHxx

Hi Lisa

Glad you found the right forum, I've been looking out for you.

Weekends always seem to be very quiet on here so don't think you are being ignored - there will be many people who will pop on and read all the posts and they have a wealth of knowledge between them.

Firstly, as for help - have you had contact with your mum's macmillan nurse.  If not ask her GP to refer her.  If so, ask the macmillan nurse about the hospice.  Most, if not all, hospice's have a day hospice.  My husband goes on a Monday from 10-3 - it allows him to HAVE to do nothing but be looked after, but more importantly for me it allows the nurses and doctors to ensure his care is all that it should be.  Also ask the Mac nurse about an organisation called Crossroads - they have oncology carers who come in to give the carer respite - they will sit and chat, make lunch etc - you may find this to be of great support. You can google them if you wanted to know more now.

As for your mum being on a short fuse, it's difficult.  Many of us talk of this - maybe frustration and maybe due to treatment.  Since my husband hasn't been offered treatment I won't really like to comment but others can and no doubt will.  However, it is a problem that seems to be common with so many and I think it involves a lot issues.

This reply only touches the surface, I don't want to overwhelm you with information, but remember stay strong, your mum isn't really meaning to behave like this, be there for her and you will know she will be proud of you.

Take care xx

Hello and sorry just bursting into the thread again without acknowledging other peoples questions but I am finding the site rather difficult to start a new thread so I will write it here.

I just cant believe how quickly my fit 66 yrs mum has gone down hill with her GBM, she had her debulking surgery last month at the beginning of September 09 and made a remarkable recovery and was due to start her RT and Temodor this coming Wednesday Oct 21st but in the last two weeks she has become so ill since she had a small seizure on Oct 1st that the treatment will not go ahead apart from possibly the more gentle palliative radiotherapy. Her steroids have been increased twice since the seizure and quadrupled in the last couple of days as she can now hardly walk, has become incontinent, does not know what is happening around her, her short term memory has gone and she is becoming increasingly disorientated.  She sleeps the majority of the time or stares into space or at the ceiling although her appetite is ferocious because of the steroids.

From reading the brainhospice.com site I believe she is in her final stages of life.  This disease is truly devastating, she is in hospital at the moment as she is being given a new diagnostic scan tomorrow but no matter what the results are there is no way on earth she can endure the usual procedure of RT and chemo.Her blood tests have shown that this regression it is not an effect of the anti- seizure drugs (Tegretol) or overly high blood sugars so surely it must be the tumour growing again causing these symptoms?

I cannot help thinking that if they had started her RT and chemo sooner she wouldn't have gone down hill so fast, is waiting 7 weeks from surgery to therapy the norm in the UK. I thought I had read somewhere that it was about 4 weeks? I know in the U.S it is started much sooner.

I have read so much on Glioblastoma but was never prepared for what I feel is the end' so soon, even before her treatment could begin.  My heart and thoughts are with all of you who are suffering or caring for a loved one with  a BT.  I hope to god that one day a cure is found for GBM and every other sort of cancer. And thank you to anyone who replies to my long post.

Love Fee x

Hello Fee, You wrote a few times on the old WTBT tread didn't you? It's  so irritating not being able to check back but you are welcome here. 

I'm so sorry to read about your Mum's rapid deterioration.  I think such rapid changes must be so devastating  after your Mum did so well immediately after the operation.

I think we spoke before about the week wait before the operation. In our case we were told it had to be at least 4 weeks after the operation to give the operation scars time to heal before hitting them with rt and chemotherapy. Otherwise you run the risk of doing more damage and causing swelling that would do a lot of damage.

I know some countries  and hospitals vary a bit within their routines. It's also easy (I know because I have done it myself) to think that things are better in the US. I'm open to be corrected by anyone if my perception is wrong about this but although they tend to take a bit more aggressive attack in some cases, as far as I know (and I have looked) their results are no different to ours in Europe.

I wanted to say all that because it would be such a shame if, quite apart from the shock and sadness of the illness and its effects,  you felt as much as possible wasn't being done for your Mum.

You can see from some of the profiles on this site (Not mine, I have had some technical difficulties) that the amount of treatment a person has is not necessarily related to how well they do. Many cannot have an operation, and that is a hugely powerful part of the treatment, but can do better than people who could have an operation. Researchers believe that there are sub groups of people who do well, and unfortunately subgroups who do less well according to their own chemical make-up. One member of this group's husband was taking part in trials to try to identify what the differences were.

None of this helps you of course, but just my thoughts on what you wrote.

I'm not sure if you are a hug sort  of person but I'll send you one anyway.

Best wishes,

CHxx