We Talk Brain Tumours

Naomi, hope your older kids get better soon, I am not sure how you still have the energy to deal with them all with what you've been going through.  Good luck for your baby's upcoming surgery.  Sharron my thoughts are with you also.

llowe, sorry you've had to join us on this train, but I hope we can be a source of information, encouragement and a place to just to vent when you need to.  In Nov 2008 I had a tonic clonic seizure in my front garden, no one around I woke up and went in and put all my shopping away before phoning my husband to say I think I fainted (ha if only), he told me to call our GP, GP said I needed to go straight to hospital.....long story short, had an MRI which was sent to our local head/spine specialist and the following morning I was told I had a brain tumour.......life as we knew it ceased to exist.  Two days later I was at Queens Hospital, Romford discussing my options with a brain surgeon.  Please take a look at my profile to read my story, treatment history etc to save boring everyone here. As for life expectancy ...... hmm a mere 2.5 to 3 years.  Been through RT and 6 cycles of oral chemo and now 2 years 9 months later I am still here, still function quite well, albeit with hardly any short-term memory, unfortunately what the brain surgery didn't take, RT zapped away.  I am now 44 and my new name is Dorey from Finding Nemo!  I no longer work because I was a pre-school assistant working with 2 and 3 yo's, my word recall suffers also so it wouldn't be good if a child asked me what something was and I replied "oh I was hoping you could tell me!".  Life has changed but life is still good, less money, less hair, more weight etc.......but like everyone else has said, a positive attitude and the ability to laugh at oneself has helped me immensely and there are no bad side-effects from that, so there's certainly no harm in it!  I wish your sister well with her RT and the journey ahead, feel free to ask anything :)

Love & Strength to all who want or need it right now xxx

Firstly to Naomi,

You are so right in how you will feel about your dad- you never stop missing them ever. You do get used to living with the feeling and it becomes part of you. It was 6 years on the 4th Oct that I lost my dad and I still think of him every day. Thinking of you for when the funeral happens. Though you say you haven't contributed to his funeral, you were there at the very most important time for him when he was alive. You helped make his last year special.

Thinking of you too Sharon as well.

Charlie! So so chuffed to hear that Ali is getting her driving licence back soon! My other half hopes to get his back in May. (Mr T).

Ilowe,

Debs has shared her amazing journey with you and Debs was one of the ones that gave us so much hope and inspirement when Steve was first diagnosed- Thank you Debs!- as well as reading about Charlie and Ali. Every journey in Brian Tumours is so different. Once you, your sister and your families have had a chance to absorb what has happened to your sister, you will start to focus on how you travel on this journey. My biggest advice? Don't focus on the statistics too much- just focus on your sisters own journey. This thread is great support!

Thinking of all the others i haven't mentioned who post on here.

Zanandu, thanks for the compliment, you are so right about statistics.....I tell everyone I am NOT a statistic, I am ME!!!!!!!!

Dear IIowe,

I can see you have had some response already from some of us on this site and I would agree and echo all their thoughts. This is a really helpful site and I am sure you will gain knowledge and strength from it.

Clearly, everyone is different, as we know, but nothing, absolutely nothing, prepares us for coping with something like this, but cope we do. Some days, I'm amazed at how we get through things, other days, I feel I have let myself down and feel angry, frustrated and ashamed by the way I feel and respond to situations. Sometimes, it's not the big things, it's the seemingly petty, irritating things that drive me to distraction, but I guess this is all tied up in the anxiety and tension of it all.

IIowe, we are almost 12 months on since we first knew something very serious was amiss, as you will see from our profile, if you want to look at it.

I do understand how unreal this all feels and the panic and fear, but you will cope, and as I have said above, sometimes you will find reserves you didn't know you had, and sometimes you will plumb the depths...but you will keep going and be strong for your sister, and that shines through in your message.

My advice, is to make sure that your sister is able to ask whatever questions she needs to and that someone is with her to support her and to help her weigh up her options. Not easy, I know if you are in a state of shock.

It might be useful to contact the Macmillan Nurses, they can help point your sister in the right direction to a number of things, benefits, counselling/emotional support etc.

Thinking of you and everyone on the site tonight, and especially, Naomi, Sharron and Ange at this time.

Love,

Elaine B.K. 

morning all, gutted that England lost their quarter final match against France and are on their way home - still, no more getting up early at the weekend to watch lol

Hopefully this will get us back on page 1 :)

we were back on page 4 :O

How can we be on page 4?  the amount of posts we have here - we should be page 1!

So sorry to see new passengers on our train, you have already seen and heard the support.  Statistics are useful for clinical staff and the powers that be but to us they are nothing.  every  person is different and has different journeys.  No matter what is said you will trawl the internet and look at different sites and read so much about brain tumours, my advise is to share with us, we may well have already seen something similar and we may have guidance for you.  Keep positive and although you are devastated now you will share some incredibly special times as you travel along the BT journey.

Has anyone heard from Martyn - he seems to have disappeared and I am concerned about him?

have a good evening everyone - and a glass of wine, whether real or virtual.  Mine will be real, and an elderly neighbour asked  me to have one for him this evening too as he is on tablets and the GP said he cant drink, so I will do my best to accommodate him too

Joanna xx

Must keep us near the top.

Love and hope to everyone on here tonight .

cathi x

Hi everyone, I hope that everyone is remaining strong and I really must apologize for not being around lately.

Nothing bad has happened with Ali and I.  Every day is very similar to the last, in fact.

As some of you have seen, Ali managed to get onto the sofa and watch a little TV with her dinner.  She was fairly awake for a while yesterday at dinner time and actively wanted to get up and onto the sofa, so I got her there despite her being very weak.

She found the exercise extremely emotional and persevered through the obvious discomfort that sitting up on the sofa presented.  I also found it emotionally draining as for a brief moment, I had some of my wife back again.  That doesn't really sound "right" since she's always been my wife, but I'm sure that you guys above all understand me.

We had a little time together this afternoon between all of the sleeping and she had her dinner in bed as is usual these days.

Sadly, she has a shearing graze on the back of her thigh where I've been sitting her up and swivelling her to get onto the commode in the mornings.  So I've been trying to find ways in which to limit this.  The first thing we tried was the slide sheet which turned out (predictably) to be a disaster.  I'm now trying a folded up disposable kylie sheet (since one side is smooth).  This seems to be working better, but I'm waiting to speak with the OT about technique/aids.  I'm still resisting having to use the hoist on a regular basis as I'm sure the sling will cause more abrasions over time.

Sorry for the long and rambling post, but this is where I am right now...

Wow.  It's just occurred to me that it's Saturday night.  What a thought.