We Talk Brain Tumours

MrsSG- sorry about your bad news of the scan.. its never easy to know what to tell young children is it.. my 24 yr old daughter has spoken gently about it to her 4 1/2 yr old son and told him that even if she's not here she will always love him.. and he sometimes seems ok with it but sometimes sobs and says please don't go mummy, it breaks my heart as I'm supposed to be strong for them all..

xx

Debs reflections - thank you for your story of hope, it sounds like your husband has been a real brave battler during his illness.  I'll take on board what you've said and hope we can stay as strong and positive as you've been in the hope of battling this illness for as long as possible.

Susiesue - our little ones will have us to fall back on when they loose their precious mummy / daddy, certainly not ideal, but they won't go short of feeling loved.  I'm quite fortunate in that my children have lots of strong male role models, does your daughter have lots of close friends who can help to fill the void? - tho nana's are fab and take some beating :) 

Oh my goodness, I've just had a deep and meaningful conversation with my 6 year old about what happens when a person dies.  This now seems a regular topic of conversation at bedtime and generates lots of questions, some of which are so random.  I tried to explain when a person dies all of the nice bits make up your soul and this is the bit that goes up to heaven, and when daddy dies he will always still love her and be watching her as she grows up (and when she's naughty too!). I'm very much being led by her at the moment and she seems to be being incredibly mature - I'm so proud of her.  She's asking if I'll die so I've been giving her lots of reassurance that I will be around for a long long time - this is so so tough.  I wish at times like this that it was just me that this was impacting to spare the children of the heart ache which is to come.

MrSG was quite perky today for a good few hours, then got sleepy towards the end of my visit.  He is unfortunately incontinent and isn't aware of when its happening which is causing him distress - this bloody disease is just awful and strips away every single ounce of dignity doesn't it.  The Dr's said they'll keep him at 16mg of dex for a week, and then look to reduce down gradually and see what happens.  Hoping he'll be able to tolerate a reduction without the same side effects as before.

Was hoping to speak to the Mac nurse today but unfortunately was unable to get hold of him, means nothing will happen now until at least Tuesday, so I suppose I now have the next few days to mull everything over i.e could I cope with MrSG coming home, or do I go down the hospice route.  Am hoping the Mac nurse will give me some guidance and advice on this subject, though can imagine they'll still say the decision is mine.  Not looking forward to having to make that decision.

x

Lost Hope,

I'm so very sorry to read of Ian's passing. May the forthcoming days be gentle on you. Take time and take care.
Naomi.xx

Dutch - I like to believe that our relatives know we are there right until the very end. Jane may not be able to see you or even hear you properly but she will be able to feel your presence. My dad gave me a copy of his DNR a couple of months ago that he had signed with the Hospice doctor - he wishes to have only hydration at the end (even though this will prolong his passing) but no artificial feeding. The Hospice have reassured us that brain tumour patients are not often wracked with pain, they usually fall in to a coma before falling asleep forever. Keep going and keep being strong for her if you can.

Mrs SG - I have six children ranging in age from nine months to 15 years. I have a four and seven year old in that lot and spent a lot of time with the Mac Nurse regarding what to tell those two in particular about my dad's illness. She stressed constantly to me the absolute need to be honest with them but obviously in terms they understand. They know he has a "bad" in his head which is why he isn't how he used to be and that soon - when the "bad" becomes too much for him to bear - he will go to sleep forever but that he will live on in their hearts and minds forever. The Mac nurse told me that children under the age of nine find it almost impossible to grasp that death is forever which is often why they are far more accepting. My 15yo son has been struggling with it recently and has gone slightly awry at School and my 13 yo daughter has started some strange obsessions/rituals in a bid to try to take back some control.

Love to all on here tonight.

Naomi.

xx

I'm so sorry. My husband passed away due to a glioblastoma on 8 May. Its so hard.  x

Moving us up

Cxx

I heard with sadness that Tom Daley's (olympic diver) father passed away today from brain cancer.

I can only hope that this even further raises awareness of brain cancer and that more effort goes into investigating the causes and treatment of this most cruel of diseases.

I wish peacefulness for all on this day.

Pete

Me too, I was very saddened to learn of Tom Daley's dad's death. 40 is no age, no age at all. He dedicated much of the last decade to helping Tom become the success he is - he raised a fine young man and hopefully his legacy will be Tom claiming the Gold medal next year.

Keep going everyone.

Naomi.x

I'm doubly sad, Naomi.  My wife has just turned 40.  She started radiotherpay just a few days before her birthday.