We Talk Brain Tumours

Love and hugs to all, its a surreal time for all of us.

Paul remains in the hospice but today the bed, mattress and hoist were delivered, OT came to see if we needed anything else - a new extension to store the equipment would help!!!!!!!!!!!!.  Paul seems to remain chirpy but its really getting me down, feel like crying everytime I see anyone, I cant believe the fit, fabulous man I met when I was 16 (34 years ago) is now so dependant on others and unable to speak.  My home is turning into a hospital ward.  Paul has gone from requiring the odd paracetamol to needing morphine in a matter of hours, his mobility is really poor whereas 16 months ago he was happily walking 10-14 miles per day, now 10 steps is a huge effort.   I know its not about me but I feel so lost and helpless.  Tomorrow we go to see the oncologist and I dread him deciding to stop the chemo as it will flatten Paul, but his platelets are taking so long to recover now that its a real possibility.

I have decided to reduce my workload and will go to 4 days, work has been a saviour to me, so supportive and a place to be "normal" for a while.  Sorry for the depressing self indulgent post

jms xx 

jms I know that feeling of the house resembling a hospital.  Sending loads of love to you and all the others travelling through this terrible time.

Hello, you arent being self indulgent.  The lovely people i have had support from on here have been an enormous help to me. Hope it is a support to you too. It's hard though I know only too well, lots of love x

Hello,

My deepest sympathy to you and your family. My husband also passed away the same week as yours to a glioblastoma. I'm feeling very numb and dont know how i'm going to cope. If you would like to conatct me i would be happy to hear from you x

Hi tiggywinkle.

I am so sorry for your loss. My husband Hank, passed away on my birthday on Good Friday (22nd April) in my arms. I so understand what you mean when you say that you are numb. I went back to work last Monday and lasted for 3 days. I have developed a kidney infection and I am now off sick for all this week. The doctor believes that I am now suffering from Bereavment. Please feel free to contact me on my email at  (email address removed by admin). I believe that it has hit me over the last weekend, when everything was totally empty and lonely.

Please feel free to keep in touch as I don't know how to handle these feelings and I cannot stop crying. It is so hard to explain your emotions as we have gone through so much.

xx

Olivia

Good morning all.

Just a rushed message to OLIVIAANDHANK .  If you would take my advice? delete your email address. There are some strange people who plague open sites such as this and you really wouldn't want them to have your details. I would always request a friend and then private message it to who you choose. Best wishes to you all.  Martyn XXXX

Hi. Was at a really bad point when I sent this. Can you please remove or advise me how to remove this email with my email address?

Thanks

Olivia

Olivia.  I've contacted the admin team and hopefully your email address in the post above will be removed soon.

Zoeteen

Thank you so much for that lovely message, it moved me to tears but I felt better after a good cry.

I was feeling really selfish and fed up when I wrote my post. Of course my dad is going to cry - who wouldn't when you're terminally ill? I just "know" they are tears about feeling out of control of his own life. A few weeks ago he knew he was losing his marbles (forgive that phrase, I cannot think of a better way to explain it) which in many ways was harder. Now he seems unaware of his behaviour and how drained mum is by it. In the early days of his diagnosis I used to read other's posts about the fastidious behaviour and OCD and never thought it would happen to dad ....  Mum gets counselling at the hospice and they just reiterate it's the tumour doing this, not my dad. They also told us not to look back so much at what he used to be and try and just enjoy him as he is.

But, again, thank you Teen. It does help to know other people on her understand as my "real life" friends see dad pottering about with his sticks and seem disbelieving that he's even terminally ill!

Onwards and upwards to all of his on here.

Lots of love,

Naomi.x

JMS

You're entitled to feel as you do right now, it's nice that we can all voice the feelings we try to ignore on here - amongst others who understand. You are doing your best and should feel proud of yourself for doing so.

When my dad made the decision to stop his chemo I was devastated as it felt he wasn't prepared to try to keep going for us. However, with the cessation of active treatment his physical decline halted dramatically too. I can now see how poorly chemo was making him. He has his taste back so can enjoy the odd pint of beer and the constant vomiting has gone. I'm so proud of him for being brave enough to speak up as I know he only did it for as long as he did for us. That said, if your husband's wish is to carry on with the chemo then I hope he is able to.

Keep going.

With love,

Naomi.x