We Talk Brain Tumours

So sorry for you Worriednow. You are further down this awful road than the rest of us and words cannot heal then pain you are going through. Your Mum has a wonderful daughter who cares deeply and you will have memories of a wonderful Mum whose love surpasses this awful disease. Just keep loving her as always.

Hi Worriednow. I am slightly nervous of how to respond...my mum passed away 2 weeks ago of GBM4 so I am sort of familiar with where you are if you know what I mean. 

I haven't written on here much since mum passed as I worry about worrying other people by talking about how things were towards the end. But your post really stood out as one I wanted to respond to. I can say right now I don't have an answer of how long your mum might have. But I will say, try to trust your own feelings about it.

I know I am the type of person that craved information and wanted to know what was going on, I don't know whether you're like that too?

I don't live with my parents (but close by fortunately), so a lot of info I got was from my dad or on here. In the end because I wanted a better idea of where mum was I called her district nurse to find out. I couldn't discuss this with my dad as my parents didn't really discuss palliative information with me  (just the medical 'get you better' information.) A bit too much of a reality check I think and hard to be hopeful with that knowledge, but  like I said, I need information and facts, even about sad things. If you're like me there is an informative palliative care site called Brain hospice if you want to find out more about what to expect towards the end (last  few weeks, although obviously each person is different)

The nurse, and then GP cos I rang him too,  told me mum probably had about a week (like you said, they don't like to commit, her doctor said that she could 'rally'). In a way I'd expected this response, in a way I hadn't. I saw my dad that evening, scared of 'giving away' that I knew how little time mum had (although the nurse said she had discussed this with dad) that night he commented he thought she had a few weeks in her...how could I be the one to confirm this wasn't the case?

Problem was, in trying to skirt around the truth  (which dad had an idea of, but hadn't talked to me about) I didn't follow my gut instinct which was to be with mum...I went home at 9pm that evening (monday) and she died on tuesday at 5.17am the next morning. I'd had my bags packed  since monday afternoon to go and stay with them from that night, but I didn't...I just visited for the evening.  I decided to wait one more night so I could work up to it so as not to worry either of them (and my brother was coming on the Weds as I'd called him to tell him not to wait until saturday) we were both too late and it hurts.

I suppose what I'm saying is trust yourself. 

Sorry if this is a depressing post. I just wish someone had said to be 'just be there' stop faffing about worrying about other people and do what YOU need to do. (Actually, they did, but at 1.30am that morning, I read it, but didn't think it made sense to go in the middle of the night - how would I explain my arrival to dad? I would go first thing instead. But I was too late.

I have 'friend requested' you if you do want to talk more. Or read my profile -it might be informative. 

x

Hi All, Sorry to see more members joining this forum, its been a wee while since I added anything. We've not been good, Stewart continues to deterioate physically and mentally daily it seems. Seizures erratic and steroids dosage changing to try and control same as well as anticonvulsants dosage changing and new one introduced, ( on 3 types now ) Its been 9 weeks since radiotherapy and chemo finished, was deemed too ill to have follow up chemo treatments, scan next week on 8/03/11 then the following week for results, dont expect good news. We have Marie Curie Nurses in 4 nights a week, sleep deprivation being a way of life for so long. I feel such a defeatest and wish for this living nightmare to end, it just seems so unreal and I just seem to function by being abnormally organising my home and planning cupboards and storage solutions constantly, feeling bitter resentment from time to time that Stewart never got round to doing all the things he promised........... then I feel guilty for feeling that and realise that I would give my right arm to make him well again and be able to be with me to a ripe old age. I love him so much and cant imagine what I'm going to do without him.Seems like everything is inplace for his final days here, all outside agencies i.e Macmillan, marie curie ,GPs  district nursres, out of hours nurses, hospice services, etc etc all on standby if not calling in daily, prescriptions of various descriptions to help alleviate any eventuality are here or ordered on standby, so these are precious last days it seems.  

Dear Hazyfantazy21,

My heart goes out to you. Am sending you cyber hugs. Can relate to all you are feeling. There are no words that I can say to comfort you. My husband too seems to be deteriorating in front of my eyes and I too feel it's just not fair.

Sending you and your Stewart big hugs.

Beedarsh

HI all

We had meeting with consultant and told basically the only option we have now is maybe radiotherapy and palitive care, they can maybe give us weeks poss months with this but mums tumour is too aggressive, mum calls it him, she hates men at the moment!! so we are taking each day as it comes now.

My thoughts are with you all and idreamoffiji, I am so sorry for your loss xx

Hugs to you all and thank you so much for your post as this helps me so much knowing we are here together to help and support each other, even though we have never met I feel like you are all part of the same  family going through this C**p time xx

Dear idof

just want to say how brave you are to come on this site again and how helpful your words are to us all. There seem to be so many of US on this site.

Dear worriednow hazyfantasy and zoeteen...my heart goes out to you all.

My husband still in hospital, bracing myself for his return home with full care package. So hard to accept care and try to do everything myself but I know I must.

lots love to all..this site means so much to me now

Opal xx

Dear Opal

I am glad you will all be home together soon and I wish you well with the care etc, sending a big hug and more xx ( A bottle of red/white waiting if you need it :-) xx)

IDOF, I have just read your profile and cried my eyes out, you are SO BRAVE (have had to keep re-typing this now as cant see through my tears!!) and thank you for your post it helps to know a little more of what to expect, THANKYOU xxxx

Hi all.

It's hard to find the right words to say on here at times.

I feel for those who's loved ones are in the last stages of this evil disease and those who've recently lost a loved one, your insight is very helpful. You are all in my thoughts though and I pass on my best wishes and support to you all. Apologies about not mentioning specific names, I cannot remember all of them.

From reading the last few pages, it seems me and my family have a stressful and testing journey ahead. We've also got the issue that my mother is still yet to learn the truth of what she has. I'm one of those who like to know the ugly truth and I find the lack of information annoying at times. I have learnt that she has no will made nor any funeral cover in place. This is something which my father knows but he is unsure of how to address the issue, which is understandable.

The immediate news is that my mother may be home tomorrow or in 14 days, subject to an issue with care. We've got smoke alarms, keysafe and a new rail on the stairs put in by the social services. Just waiting to find out what is happening with care.

As for my mum's condition, she's still the same as she was. The high dose of steroids have made her put on weight, so she puts it. She's still tired and weak but that may be frustration of being in hospital.  She's on an epilepsy drug to combat the seizures. It seems to be working but my dad keeps getting random comments in text messages which seem like old memories surfacing.

As it's been 4 weeks since the seizures started and with a bit of luck, my mother may be having a scan in a week or so. We may know then what's happening with the tumor.

Keep strong everyone and remember to take some rest.

Dear IdreamofFiji,

I read your profile last night as I lay in bed unable to sleep and it broke my heart. You are such a brave person to come back on this site and help us to understand and face what is ahead of us--THANK YOU. I cried buckets last night and wasn't in a state to write coherently so decided to wait until morning to express my deepest sympathy for the loss of your beloved mum. I know words are often meaningless when we hurt so deeply but I still wanted you to know that although I am a stranger to you, I can empathise with you entirely and many more on this site. Take care of yourself and please work through your guilt that you weren't there when your mother passed on. Don't let it fester.

Sending you and your family big hugs.

Beedarsh

IDOF, so sorry to hear about your mum, I read your profile and you have been a loving and caring daughter and wil continue to be a huge support to your dad.  Part of grief is feeling guilt, just one more thing for us all to cope with. 

There seem to be so many of us here at present and most at similar stages, Paul seems to be a little behind some of you but I know this could change at any time and it scares me so much.  His bone marrow is taking so long to recover that I fear he may not be given more chemo when we return to clinic in March, and he is currently on such a small amount that it is more for his psychological benefit than anything else.

Thank you for sharing you experiences, it does help, what i cant get my head around at present is why are there so many of us?

jms