We Talk Brain Tumours

of course 40 is young but here I am hoping my daughter will even reach that age.. we dont know how long she's got as the tumour has already been there since she was a small child.. sorry if that sounds tough but it is tough. 

she's still having fits and been waiting since MARCH to see an epilepsy specialist to get her medication and dosages correct. We've phoned and we've phoned and now its another bank holiday week end with no one around.

So, so sorry to hear of your husband's passing. My thoughts are with you and your family.

My husband has multiple brain tumours following lung cancer. He was diagnosed with the primary cancer in December last year and had a number of seizures 6 weeks ago which identified the spread to his brain. He was given months to live and is now under hospice care following a stroke. It's hard to see someone who was always a larger than life character become so weak, so quickly.

I hope your husband didn't suffer and that you can take some comfort from the times you had together.

Sending you my love

Jools xx

This morning, around 9.30, JD stopped breathing and turned purple. So I thought the end had come and I called the nurse. We sat with JD for 10 minutes, I cried. Then her breathing became regular again. And has been ever since.

It is now 3.50 in the afternoon. So a warning shot. Needless to say I have not left JD's bedside since. Her mother came and left, having said her goodbyes and made her peace with anything that might still need peacemaking (sorry for crappy grammar). Then our friends K&R came along with ample supplies for the rest of the day, stating they were ready to stay as long as I want them.

And so we wait. I know there is not much time left. But how much or how little is a complete mystery. So it is a strange thing sitting here with friends, food for the evening, Ipads, books and crips, waiting for death. Knowing JD, she will make us wait. And wait. And wait. Just because she can.

Dutch- thinking of you and wishing you strength and love to go through this very difficult time xxx

Oh Dutch, words wont help be you will remain in my thoughts.

joanna xx 

Dutch.  We're all with you, every step of the way.

Dutch - ditto.

x

Dear Dutch....No words. Just sadness that JD's journey is nearing an end.

Love and peace to you both in the days to come.

Cathi x

Dutch

I'm so sorry. The part of the journey we all dread. Nothing I can say will comfort you, know that we are all here for you when you are ready.

Much love,

Naomi.x

Sue

No need to apologise - that's what this forum is here for, to voice our innermost thoughts and feelings. One of my best friends lost their 2 year old daughter to Neuroblastoma so I know cancer is no respecter of age. I'm sorry if my comments about Tom Daley's dad offended you, I really am.

Mum brought my dad round to see us today. If it's possible he seems even thinner than he did last week (he has never gained weight during his battle, even on high doses of steroids). Sustaining a conversation with him is almost impossible. His confusion has got much worse. Seeing this once-brilliant man struggle to find words causes me such pain it takes my breath away. And yet physically he seems reasonably well (that said, he had two big seizures on Friday - the first ones for at least a month - but they are trying to reduce his steroids so maybe that's what it was) apart from the alarming weight loss.

He also has a very swollen right leg and has had for at least six weeks. His doctor is not concerned and has ruled out a dvt but I am wondering if this indicates lymph node activity? I'm not sure and could be very wrong.

He asked his oncologist last week how he will know that the tumour is growing again and how he will know he is nearing the end and his oncologist said he would get all his original symptoms back again (fits, headaches, sickness etc etc) OR he could have a massive stroke and die instantly. Forgive my ignorance but a stroke had not even crossed my mind ....

Love to all on here and may we all find the strength from somewhere to keep going.

Naomi.x