We Talk Brain Tumours

Well Pam my love you were ssooo right you certainly made me cry. What a beautiful poem and your planning for Tony's day sounds perfect to say good bye to the man he was, in a way you both would want,. What more can anyone ask.........

Lyn thank you for your kind words . I will deffo  try the note next time we have to visit the doctors.

Debs will miss you hunny . You enjoy what ever you're up to. Be good  ( I know it will be difficult) and take care.

Much love and peace to everyone

Denise xxxxxxx

Pam,

I don't have much to add, but you're doing a fantastic job.

We are just back from the hospital after receiving my sons latest scan results.The tumour (Jeremy) hasn't grown and has in fact shrunk a little more. This despite him being unable to finish his last course of chemo.

So for anyone who's just been diagnosed (Jeremy is a grade 3 anaplastic astrocytoma) there can be light at the end of the tunnel. In 2004, Jay was told he would have approx. 2 years. His oncologist said to-day he is now in basically uncharted territory. Jeremy may well grow again and grow aggressively, however he may raise his head and be zapped again...who knows! If Jay can go another few years who's to say what progress and what different treatments may be available.
One thing we all feel is the need to stay positive, we are all convinced this has played a huge part.

xxxxxxx 

That's good news, Marney.  Even if it's in the short term, you can relax and enjoy life again!

Pam - my dad loved the pub and his beer so we had no flowers whatsoever, just a simple sprig of hops!! Absolutely perfect for him!

Poem is beautiful xx

Marney - that is wonderful news.

I love coming on here and reading stories like these. xx

Marney good news indeed about Jeremy, in 2009 I was told that I had statistically 2.5 to 3 years with my anaplastic grade 3 Oligodendroglioma but here I am 3 years later and just had another clear scan.  I do consider myself VERY lucky and know it can change on a halfpenny, but like you said a positive attitude helps, I am sure of it.   Long may Jeremy & Buttercup stay comotose :-)

Wishing everyone a good weekend.

Hi Everyone

I haven't posted a lot on this site but i have followed it with heartfelt interest, feeling that i wasn't on my own and just knowing that you were there made me feel comforted, there are too many of you to name but you all know who you are but from one Pam to another Pam we are both are on the same carriage of our train journey. I feel that i struggle sometimes to put in words how i feel, but I just want to offer comfort and support to the new and old passengers on our journey...

Stuart my husband was 53 fit and healthy and extremely fit when he was diagnosed in September with Glioblastoma which was inoperable, he underwent chemo and 30 sessions of radiotherapy by the time this had finished in December we were beginning to think that it hadn't worked in by us some time.

Stuart passed away on 22nd February just 5 months after diagnosis he was surrounded by his loving family at home. The comfort i am offering is that although he didn't live long i want you to know that he wasn't in pain and he bucked the trend to sleep a lot and was awake and talking all be it a bit confused right up to the day before he died, he told me everyday that he felt good and was still laughing and asking for chocolate on Monday

He went to sleep on Monday evening and didn't awake up again and passed away on the tuesday night wednesday morning.  The care that we had from everyone from the day of diagnosis to his passing was beyond wonderful, it exceeded all our expectations, we were looked after by such caring doctors and nurses, The NHS out did itself in every way

We have now just finished all arrangements for his  "celebration of life" We are bringing him home the day before so he is here with us when we leave and again like my friend Pam i will do it our way ... Our granddaughters are decorating his casket with the pictures and letters that they have written telling their Pa how much they love him and don't want him to die, bless they are only 6 and 5 years old. I am going to ride in the front of the hearse with Stuart .. together to the end.

Please feel free to ask me any questions that you may have

Love and strength to us all

xxxxxx

Gosh Shelly, our journeys are similar in so many ways. Five months is so very quick though, Tony's was ten months which was brutally fast but five months? Wow. What a roller coaster ride you have just been on. Thankfully the NHS didn't let you down and that's great to hear. Stuart's passing was only four days ago. I hope you're doing OK and have lots of support. Bless you. Life at my end continues to be a mad dash around to get everything ready for next Friday's funeral. It looks like it's going to be a bit of a bash. I'm glad I have it to focus on. I'm dreading the day afterwards when everybody goes back to their lives and I have to face the future alone. Fortunately, Tony's best friend is staying for the whole weekend and is planning to take me out for the day and out to dinner on Saturday evening which is lovely. But they can't watch over me forever. At some point I have to face up to it.

To be honest, the WTBT forum has kept me sane, given me the most amazing support through some of the darkest times in my life and the people I have 'met' on here are some of the most amazing and I feel very lucky to have found them.  I really don't know where I would be without them. But, now that Tony is gone I don't feel that I want to write on here anymore. 

When I first arrived on the forum all we had was hope. I read every post hungrily to look for any signs that there was something I could do to make things better, if not cure it. It helped me to cope sharing my every day experiences of looking after a GBM sufferer. To speak to people who were in the same situation as I am. Who were in the same carriage or maybe one or two ahead. But my presence now I feel will just be a constant reminder of what could happen to those also looking for hope and a light at the end of the tunnel and I don't want be responsible for taking that away from anybody. I don't want to become the grim reaper. 

So I will come back on and let everybody know how the funeral goes but I think, like Deb, I feel that the time is now right for me to step back, continue to read, but perhaps not post so much. Not unless there is something i can really say to help on a practical level.

With love to all.

Pam

x