We Talk Brain Tumours

Fee, though your post is terribly sad - too much for you to get your head around I'm sure, it is good to read that you have now got people around you to help support all of you and help you make the best decisions for your mum.  I hope your wishes come true and your mum takes an upturn - in any event take this time to be with your mum, and dad, and know we are thinking of you xx

PS - you give me a run for my money with the length of your posts - but don't apologise, please!

Hello Fee

I dont have any wise words of wisdom sorry, but just wanted you to know I am thinking of you and your Mum & Dad at this sad, sad time and sending lots of love.

X

Hello Fee, Just wanted to send lots of strength to you at this truly awful time. Lost my partner six years ago to cancer now here with my hubby who has GBM4. Lots of love. x

Fee, just to say thinking of you and your mum and dad at this difficult time.  Take care XX

Yin and Yang, i can't believe you are going through this a second time, keep strong XX

MollieXX

Fee, the oldies who know my posts will know what I'm going to say .. but keep on hoping for an upturn. I know how serious things are but how many times we have had posts about people who, even when very very ill, have good days, time, hours even but suddenly seem to be themselves?
Not to bagatelize (sp?) how ill your Mum is or how hard it is for you and your Dad too but the human spirit is strong and with luck you will still have some good times with her.
CHxx

Sorry to hear the latest about your mum, but was vey happy to hear that you are going to receive some much needed help.

As everyone has said they do go up and down very quickly my brother is still in hospital but hoping that we can get him home for the last time.

Yin and Yang it is so sad to hear that you are going through this again, I don't know what else to say.

Sending good vibs and love to everyone

Hi fee,

Sorry to hear about your mum, it is very difficult to watch someone you love deteriote especially when you only have a few months to get your head around it. My dad was diagnosed with a GB4 in April this year and sadly lost his battle a few weeks ago, I was relieved to see him at peace as I knew he was deterioting rapidly towards the end, I now only think of my dad when he was well as the illness was such a short period in his life, I know he wouldn't have wanted to carry on as he was as he always was such a proud independant individual and had sadly been told he would be unlikely to walk again, I think that's when things really hit him hard and we lost him within the week. I was with him at the end and my mum so wanted him to be at home but that wasn't to be as he developed respiratory problems due to his lack of mobilty, I told him he was tired and had put up such a brave fight, my way of giving him permission to go but I am so sure he is still with me, strange wee things have happened and I cling onto that. I miss him terribly and I think it is just starting to hit home now but one of the feelings I had was relief as I was always anxious, anxious how he would be when I was going to see him, anxious when the phone rang, anxious that I wouldn't be there when the time came, now I concentrate on all my wonderful memories. It is such a difficult journey to be on. I keep thinking how well he appeared this time last year. I truly feel for you and your family at this time as one who has been there recently.

Take care

Joolsx   

Hey Fee,

I'm afraid I cannot offer any useful advice, but wanted to send some virtual hugs, sounds like you need them.  Remember to take care of yourself.

Love - Hayley xxx

Firstly, I want to add belated sympathy to Jean for your loss of your husband and to Fee for the great difficulty you are all having with your mothers declining in health.

I have not posted on here for ages now, chiefly because I find the site annoying (because it has annoyed and discouraged so many of it's users). 

Becky has had a difficult last two months. She is now on CCNU (lomustine) This is the C in PCV). She has it every 6 weeks and so far has had two doses). She is still on fortnightly Avastin. Before this, TMZ was discontinued as no longer contributing to tumour control. Becky had a scan 7 weeks after the first dose of CCNU. The tumour is still progressing but slowly and without a marked increase in pressure. She has frequent headaches (every day) and now takes HA tablets 4 times a day. The tumour activity has moved further back in the left temporal lobe and this has changed some of the symptoms. She speaks more fluentl;y, but has a greater difficulty in understanding many concepts Eg hour of the day or day of week or what will happen in three days time. It makes conversation very difficult.

Becky pressed her neurosurgeon on her status and he described as a slow decline, not a steep decline, but he is very uncertain about what comes next. Nor does he understand why she is getting headache. We tried a jump in steroid dose, then a jump back down. No obvious difference shown. Maybe we should reduce it further?

Becky has a perception of the inevitability of her fate, but has a determination to do the things she needs to, see the people she wants to see. Do what matters and not give two hoots for anything else. Sometimes this makes me laugh, othertimes I see the other side and try to get her to be more understanding of others (particularly her brother).

Kids are OK. Joe has had a month at university and seems to be getting on fine. Isobel works hard but has ups and downs that make her really snappy with both of us but mainly her mum, especially when they can't understand each other. Sounds like a normal parent teenager relationship.

Would anyone like to advise me on how to find you on FB? I feel the need to resume contact.

Best wishes to all

Martin

Hi Martin, are you already on FB, if you are i'm mollie smith and if you request me as a friend i will send you a Mac friend request.  Hope this makes sense.

Mollie XX