We Talk Brain Tumours

FAN-FLIPPING-TASTIC!!!!!!!!!!!!!

So very glad to hear that Damien is comatose still and long may it continue.  I hope you have a fantastic time this weekend for your daughters 21st  birthday.

Love & Strength to all who want or need it xxx

YIPPEEEEEEEE  Brilliant news.  Go celebrate, what a party you are going to have

joanna xxxxxxxxxxxx

Hi...

I introduced myself to this group on 05/01/2012 then did a disappearing act.  To talk about it just makes it real.  Sometimes its just easier to live in my bubble of denial, where my dad just likes his sleep and some day in a few months he will wake up and be his old self again.  I know that's not possible, but my mind can't even begin to comprehend what it will be like, so for now I am stuck in limbo.  I know he won't get better, but I can't accept that this will ever come to an end.

Thankyou all for your supportive comments when I first introduced myself.  You are all so amazing to be able to chat so much about it, I don't feel I'm able to do that so much just yet... because I just don't want it to be real, and talking makes it real :-(

Oh Denise! That is such good news. Proof that happy things can and do happen on this site. Enjoy the 21st with a glad heart. Many many Hugs.

Cathi x

Hi Victoria,

Yes, your father's condition is real, and it's very tempting to want to wish it all away.

Sadly, that's not likely to happen and accepting that fact is an important part of the process.  When you do accept the inevitable you will find that things get a great deal easier to cope with.

We will all be here to help you through this and talk you through your hopes and fears and share in your highs and lows.

I can absolutely assure you that when you've reached acceptance, your relationship with your father will be closer and more loving than you could ever imagine.

You will get through this, as sure as the sun rises every day.

Denise, I love coming on here and reading of someone kicking this disease's bum. I'm so pleased for you all.

I hope your daughter has a 21st birthday to remember (but not by her, she'll be too drunk!).

WIth love,

Naomi.xxx

Victoria - Pete is so right, when you finally accept what is happening it doesn't mean you lose all hope. It makes it slightly less frightening when you know what you're dealing with.

My lovely brave dad died on 29th September last year following a 12 month battle with GBMIV. As horrible as his illness was, it wasn't all doom and gloom. I shared so many special moments with him that I may never otherwise have been fortunate enough to have. There were still lots of laughs and smiles along the way. We had a lovely three month period in April, May and June when dad was in "partial remission" (in other words his tumour was unchanged from the previous January) and he even managed to get away for a little holiday.

He died peacefully and with dignity - just the way he had wanted it to be - after being in a coma for the last ten days of his life. For now your dad is here so enjoy loving him and cherishing him.

Keep reading here, and posting if you feel strong enough - the people on this particular part of the site are some of the most amazing I've ever "met".

With love,

Naomi.x

Hi Victoria

We've all been where you are now and, like most other aspects of this journey, we all took a variety of different routes and timescales to get to that point of realisation. The fact that you have dipped your toe on here again would suggest you are starting to edge towards perhaps some small scale discussion about your Dad. 

You take your time. Go at your own pace. But I was definitely more worried about things when I didn't have a clue what was going on. Once I learnt more about the condition, although much of the reading was shocking, it did calm me down a lot. There was definitely an enormous dollop of "fear of the unknown" in my case. 

I also hadn't appreciated how complex this illness is and just how much information you need to absorb just to understand what is going on. About the illness, about the symptoms, about the drugs, about the side effects.

I found that knowledge is definitely a good thing. There are some symptoms which initially I found so shocking e.g. the seizures, but the oncologist, the nurses and the rest of the world have since told me are not damaging and are easily controlled. And then there are other symptoms which, are small, less dramatic but which could mean something more serious is going on. If you can't tell the difference between the stuff to ignore and the stuff to look out for then you're just going to worry about all of it. Ignorance is definitely not bliss - quite the opposite.

I've learnt such a lot from the lovely people on here and we'll all be here and waiting to support you through this when you decide the time is right for you to ask.

With much love and strength to you.

Pam

x

Hi Denise

As I type this I am wearing my cheerleading outfit, my pom poms in the air! There is an enormous parade and I have a brass band marching down the street behind me and there are two enormous elephants in my parade holding a banner between their trunks which reads "DAMIEN IS STILL ASLEEP".

The sky is filled with fireworks and there is a plane skywriting the words 'DAMIEN IS STILL ASLEEP" across the sky!

In the middle of an enormous field there are 2,000 people who have laid down in formation to spell out the words 'DAMIEN IS STILL ASLEEP" - you can see it from the moon!

Jamie, Heston, Gordon and Ainsley (poor Antony W-T isn't well enough) have baked you a cake and iced it with the words - "DAMIEN IS STILL ASLEEP".

Could not be happier. How lovely to read such wonderful news. 

Enjoy every moment of your daughter's 21st and everything else before and after!

With much love

Pam

x

I don't know what medication you've stolen, Pam, but I want some of that.