We Talk Brain Tumours

JM7, ask them to look carefully at the anti seizure drugs. It was one of the many things that the MDT kept an eye on with my daughter, especially if they are on Keppra, as this can have serious side effects of severe depression.

TAke care. PEABS XXX

Stephen P glad you are planning the bike ride, I am sure your mum would be pleased you are doing that and lets face it we love our mums every day not just on Hallmark Sunday!  the care home sounds good.  As for wanting to know "how long" I strongly believe its like a piece of string.  None of us know and I have seen many a carer die before their loved one so I believe in taking each day as it comes, frustrating and hateful as it may be.

Suelck - Isnt guilt wonderful?  No matter what we do we feel that guilt, I remember learning it's part of the "grieving process" and wondering why on Earth anyone could feel guilty when they have loved their partner/sister/child etc, especially when they had done so much for them. Jeez, I wish I was still so innocent and naive.  My mum had a "chest infection", she collapsed and I gave CPR and mouth to mouth resuscitation, then had to take the decision to turn the ventilator off because I knew she would have brain damage as it had taken over an hour to bring her round, and it wasnt what she wanted, have carried guilt for almost 10 years, firstly for resucitating her when she had told me she never wanted that and secondly for taking the decision to turn off the ventilator.  I did what I thought was correct in the spur of the moment but the guilt remains and I guess it always will.

jms xx

"Everybody has a different burden
Could be a weight upon your shoulder or a storm inside your head
Everybody's lost a precious angel
Mother, Father, brother daughter, or someone else instead
Everybody's trying to find the reason
Thinking it will help them learn to cope
But the only way anyone gets stronger
Is when they learn to share, Share hope

Hope is not a fragile emotion
It's not a candle burning softly in the night
It's more like a blazing bonfire
Shattering the darkness with its light
Hope is not a sweet and subtle feeling
It's not a whisper trying to find a voice
It's more like a '" Deep resounding chorus
Anyone can sing but you got to make the choice
Sometimes it takes a little courage
It isn’t easy climbing up that slippery slope
But when you finally do and discover it is true You want to share, hope"

Hi All

JMS - I think if I were in your situation, I would of done exactly the same as you did, there is no way you could just let someone you love pass away without trying, I don't think that would be physically possible for anyone in that situation and regarding the ventilator, you did as you were previously asked in a way, and I would most probably  feel the same with the guilt, but I think you were very BRAVE and STRONG for what you did, sometimes I cant put the right the words down (it comes out all wrong!!) so I hope I havn't offended you xx

Stephen, so glad your mum is getting the care in a lovely place, enjoy your ride xx

My 15 yr old is doing a abseil with 4 friends to raise money for our local force, I have bad knees so cant do so she is doing it for me, I am so proud she is doing this as Force have been fantastic with support and advice.

We are seeing Oncologist tomorrow to discuss r/t plan they have provisonally penciled the 28th to start mums treatment, but she has deteriated over the weekend, loosing sight in both eyes now and hardly walking and more and more confused, sexy dexy's been increased again to 16mg and more tightning in face both arms, but hey we live in hope, hope you liked the poem, LOVE AND HUGS TO ALL

Teen xx

to PEABS: I've just read through your biog and your daughter is such an inspiration XXX

Peabs

Have just read you blog, what an amazing and inspirational family you have and your daughter sounds just as brave and inspirational as  you

Teen x

Dear PEABS

Words seem so inadequate but just wanted to let you know I too have read your blog, just wanted to send you BIG HUGS xxxx

Hi Everyone,  Just been to hospital to ENT referall by GP as husband suffered ringing in his ears.  Good news is he is not deaf!!! but has tinnitus.  Never ceases to amaze me, he complains of his ears gets a referral and then sits there and tells Dr it does nt bother him.  Oh well at least we visited another department in the hospital.  Depression seems to have got slightly better today but has upset stomach for some reason?  What a rollercoaster this is.  Thanks PEABS for your advice, he is taking Epillim so will look into that.  Keep on being positive......xx

Hi - I posted this somewhere else on the net but someone advised best to post here - here help would be gratefully received

My mother in law was diagnosed last week with a 6cm tumour in her brain.  They believe it to be a grade 4 glioblastoma but that hasn't been confirmed yet.  There is a meeting on Thursday to discuss her MRI results and decide what it could be.  She had fits in December so they took an MRI then - there was nothing there then so it has grown 6cm in 3 months.

They have also done a bone scan which has found something in her neck.  So they are also trying to work out whether it is primary in her head or her neck.

We have been told that this cannot be cured and that she may not even receive radiotherapy.  She is 70 years old and has had a really bad time of it.

I would be so grateful for any words from others who may have been through this.  At the moment she goes through moments of panic and confusion and then doesn't seem too bad.  She is very tired all the time.  She is coming home from hospital today but I am not sure my father in law really knows what to expect.  He is planning to do all her care but I am not sure that will be possible - they are both 70.

My husband is her only child and we will be doing all we can to assist so it would be good to may be know a bit more.  

First of all should I be asking for a second opinion?  Are there any treatments that I need to find out about which may not be offered?  If she does have radiotherapy how will she feel?  Also we don't really know what it will be like at the end for her.  My father in law is petrified that she will not know him and be unresponsive.  It would be so helpful to hear how things are going to progress for her.  Has anyone had such a fast growing one and beat the odds of survival?

Any help would be so much appreciated at this time

Thanks

Katie

Oh Kate...

I am so sorry you have had to join us. We are all on this awful journey together and some can help you with the medical and some with the emotional.

All the questions you ask are the ones I was asking when I first came on here in January.I still do not know the answers to most of them. This I do know....take each day as it comes and try not to look too far forward. Accept help where and when you can get it and delegate where possible. I gave all the research to a relative because many well meaning people will send you internet and newspaper articles. Your father in law will find it difficult but like all of us will want to do everything. Go with him to all the meetings.Take notes for him. Get blister packs of meds delivered from chemist Things will settle into a routine of sorts. Keep posting on here, you will find the support you need.

As for your final question...... We keep hoping.

Cathi x