We Talk Brain Tumours

FormerMember over 15 years ago

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Hi everyone

I am just trying to navigate myself around the site. Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread

Love Ali xxx

FormerMember over 13 years ago in reply to FormerMember

Its so sad to hear that as carers we sometimes feel so alone and so desperate, help is out there but its not always easy to find. Julie, I hope this morning finds you feeling stronger, as so many have said its an awful disease and a horrid journey but somehow we do find the strength to cope and to continue.

Love and hugs to all

Joanna xx

FormerMember over 13 years ago in reply to FormerMember

Thank you all so very very much for your kind words, cannot describe how you guys have made me feel, definately not alone, my cry for help was heard and dealt with by you wonderful people.

This morning Alan was very very tired as not a lot of sleep but was calmer so seems a bit better. Its my birthday next week and our Son gets married in two weeks and think this has a lot to do with my desparation at the moment, try to take each day as it comes, make the memories, but as you all know its so bloody hard and cruel.

Again thank you all for your lovely support HUGS all around xxxxxxxxxxxxxxxxxxxxxxxxxxxx

FormerMember over 13 years ago in reply to FormerMember

hi there hope you dont mind my replying,ive been reading a few of the last post and i can really feel the overwhelming warmth from all you lovely people,the support everyone is giving each other is unreal.im the newbie this is all new to me just finding my feet abit. il just tell you a little about my situation,my mums been ill 15 years with brain tumours a couple have been removed then raidiotherapy an now we on to stereo stactic surgery up to yesterday she had 17 brain tumours she now has 19 and on the waiting list for more treatment,shes still battling for her place here even though her health has deteriorated rapidly over the last 18 months.we all have to stand strong and be there for one and other.i will certainly be trying to stay positive for all of you as well.

lots of love to you all xxxxxxxxxlindsey

FormerMember over 13 years ago in reply to FormerMember

Hi harddays2011 & welcome, you will always find someone on here with wise kind words and that's how we all stay strong I think!

JM7 I'm glad Alan is brighter today you certainly do have some emotional weeks coming up and I found when it was my birthday, my sisters were all envious that mum was still here for it but it was a hard time but another time when we all managed to get together and have a few laughs, some lovely pictures and memories. It must be so hard as the main carer and I admire what you all do.

I need help today I'm sorry to ask you all. Mum's weakness is her left side as tumours are in right. She has almost lost all use of the left side but now her right hand shakes most of the time. Her steriod dose has been reduced now for four days to 8mg and she takes Amitriptyline (can't spell that) for the pain in her weak side but I'm wondering what the shaking is in the right side and if this is something any of you have experienced. There wasn't anyone at the hospice we could ask at tea time. She is still in there getting the meds right, hoping to come home tomorrow.

Thanks and love to all xx

FormerMember over 13 years ago in reply to FormerMember

JM7

I'm happy to read you and Alan are feeling brighter today. Congratulations on your son's wedding - how exciting! Hope you all have a lovely day.

Naomi.xx

catg over 13 years ago in reply to FormerMember

Hi Sworthey

From my experience.....Marks tumour on the right and weakness on the left. Right hand side would have slight shaking which i later found out were seizures from Tumour.....I had assumed they would be big "fits" and did not recognise them for what they were. Hospice medicated them as seizures.

Hope your Mum gets home tomorrow and I am so happy you have had good times and laughs.

Love to all who have joined train recently...seem to be so many of you.

Cathi xx

FormerMember over 13 years ago in reply to FormerMember

Evening all. I have had the day from hell so prepare yourselves!

Firstly, today I met Katherine (mac nurse) and she does not think dad is as close to death as the oncologist lead us to believe. She said he appears physically very strong (eating/pooing - not walking, although he now has a walking frame he has forgotten how to walk - keeps lifting his leg as if to walk but going nowhere, heart rate, bp all fine) and she thinks we are looking at October time rather than September, although she did continually point out that nothing about GBM is predictable.

Dad is extremely suspicious of everyone and thinks we are all out to get him. He got cross with the Mac nurse, mum and I and was shouting we were all bollocks (excuse my language) and telling us to leave. It did him the world of good because after his outburst he cried for about ten minutes, proper wracked with sobs. We all cried.

While mum was helping dad in the toilet the Mac Nurse said if dad falls mum must call an ambulance and the paramedics will put him back to bed, as mum has had heart surgery and isn't supposed to lift anything heavy. I forgot to tell her this but on the way to getting the kids I felt an overwhelming urge to pull over and text mum. Ten minutes later dad collapsed on the kitchen floor, couldn't get up and mum had to call an ambulance :( Fate or what.

As soon as a bed becomes available dad will go to the Hospice for a few days so they can try and increase his steroids and give mum and him some respite. Dad struggled to understand and kept asking if he was going away forever (absolutely heartbreaking). He looked at Katherine and told her he loved his wife. Very touching moment. Cue more tears.

He spent the whole visit begging Katherine to kill him, over and over again. Katherine said that in her opinion brain tumours were much worse than other cancers in which there are drugs to control pain. She explained to him that when he only has days left, if he is very distressed they can give him something to make him sleepy (effectively a drug induced coma). Dad was extremely tearful (mum says it's the first time she has seen him properly cry) and kept trying to ask why this had happened to him, he loved his family and didn't want to leave them.

Katherine helped us to understand that dad was feeling so guilty that he was being a burden to everyone and despite how many times we reassure him that that isn't the case, he is always going to feel that way. As he was so physically fit and active prior to his illness he now feels imprisoned in his own body and betrayed by it.

When he goes in to the hospice he will have some counselling and Katherine feels it is better that this happens away from mum and I as he is holding back what he really wants to express for fear of upsetting us.

Also when he is in the Hospice they will try to address his reflux/choking although explained very gently that it is a symptom of brain disease and not easy to treat.

I love him so much. Today was the first time I saw how vulnerable and scared he is. Mum is in a terrible state. His seizures are happening multiple times a day and it's distressing to witness. When he is in the Hospice they can give him stronger drugs than he can have at home to help control these.

I feel happy that he is in good hands after seeing his Mac Nurse. What wonderful people to be able to do a job like that. I'm so angry and frustrated for my dad, it shouldn't happen to anyone and it isn't fair.

Love to all (sorry for long post).

Naomi.xx

FormerMember over 13 years ago in reply to FormerMember

hi sworthy thank you for your welcome

sorry i cant help you with that one love,there are different parts of the brain that affect different areas of your body so i believe,my mum is virtually imobile now and shes lost her speech entirely,she cant swallow or suck through a straw but she could do all or the above 18 months ago we believe its due to the positioning of some of the tumours.sorry i cant be more help hope your mum will be home tomorrow.take care love.xxxxx

FormerMember over 13 years ago in reply to FormerMember

aaahhhhhh niaomi how terrible love,thank god theres good people looking after him,lots of hugs stay strong for mum and dad.take carexxxxlindsey

FormerMember over 13 years ago in reply to FormerMember

Thank you for that Cathi, mum is already on Epilim (or something) as she had some quite large seizures so maybe these are seizures reduced? Hope you are doing okay x

Naomi what a nightmare for you and such a hard day. My mum is like that a lot of the time, you think you'll try and have good days to enjoy what they have left but the illness takes this away too, its nasty. I guess your dad is a lot like my mum at the moment, mum feels useless, keeps telling dad to leave her and enjoy his life as he is only 62, in fact she goes on and on about this although he tells her he is staying, its awful! She keeps saying she can't live disabled and has considered taking all her tablets! My mum has gone into the hospice for some respite and they are the most wonderful people ever - its like being in a hotel not a hospital and mum didn't want to go, kept saying we were sending her away to die but she has been very happy there, drugs are balanced very well now - even some changed and some taken away but its been a blessing. We try and be there most of the day and evening between us but she has others to talk to now. God bless Overgate! Hope your mum is able to get some rest too. Big huge hug to you. Hope this helps.

Harddays2011 - you see, newbie to the site and already helping me, thank you xxx

It's weird how it all works out, never heard of the illness or this site, now totally rely on this site and friends that you think are the closest friends are never here to help but then you find those that weren't the closest, are amazing and always there. This site is like one of those friends.

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We Talk Brain Tumours