We Talk Brain Tumours

Yes Pete, I agree. When we visited the Hospice last week the nurse said that many patients' relatives bring them in and bath them themselves. I think a bath once a week with sponge baths in between is enough for dad now. He doesn't really move around and is permanently cold so he isn't getting sweaty.

My mum is very strong - as are all of you carers. She burst in to tears as soon as I saw her today so the pressure on her is immense. The fact that dad no longer recognises her as his wife (although he is extremely attached to her so knows she is very familiar to him, if that makes sense) is another blow.

Tomorrow he has another go at his MRI. That is at midday at our General Hospital then at 4pm he has his oncology appointment across town at our oncology and haematology hospital. I have to take my daughter to gymnastics so they will come here in between when my house will be empty and dad can have rest and peace.

I am very distracted and restless at the moment and it is having an impact on my children. They talk to be but I'm not really absorbing what they're saying. I just want to know what's going on with dad's tumour. I am expecting it to have grown significantly as he has gone so rapidly downhill but at least I will know. There is so much "not knowing" with his disease. I am anal about organisation and this is the first time in my life something is out of my control and I'm struggling with it.

Night all, hope tomorrow is a good day for all of us.

Naomi.x

Hi all,

So sorry to read that most going through even tougher times at the moment.  Hope your dad manages to get through his scan ok Naomi.

Our somewhat stable week ended today.  When I went into the hospital G was lying on his back across the bed with his head dangling backwards towards the floor.  I managed to get him up but his whole body was shaking and he was totally out of it. When the nurse arrived I voiced my concerns but he just said, Yeah he's been lying like that for about 10mins, he's probably just a bit dizzy!! My head was ready to explode at this point. Iasked if he could see a doctor and despite the nurse saying G would be ok, I insisted and rightly so because it turns out that he now has another infection.  He's back on antibiotics but who knows what tomorrow will bring.

Thoughts go out to you all.

Ange x 

Ah, poor Naomi.

You're learning that cancer has all of us in it's grip.  There is no controlling it, there is only coping.

Ange.  That sounds just awful that the nurses would leave him like that and not even attempt to straighten him up on the bed.

I'm so fortunate that when Ali's in hospital, I have the time to spend almost all day in there with her, caring for her with the nurses support.  Sometimes I don't know what would happen if I wasn't there.

I know, I was so angry and worry so much when I or members of my family are not there.  Although, most of the staff are fantastic and are very caring, but there's always one and most things that have happened have happened when rhis 'one' has been Gs nurse, it's very concerning.  G now beginning his 12th week in hospital. It seems that just as we are getting closer to getting him out he has another setback, a vicious circle that is leaving him progressively weaker.  I just thank god that our daughter wasn't with me, as planned, today.  It would have been heartbreaking for her to see her dad like that.

Ange x

Maybe a quiet word with the staff nurse might help, or failing that try PALS.

You shouldn't have to worry about the standard of nursing care that you're getting.  Usually, the nursing care is excellent, but there are some who view the work simply as a job and not as a caring profession.

The absolute best of care workers do so because they care, not because they need the work.

Pete - no problem,  glad that Ali is a little better.

Ange- that is terrible,  I do think that the small minority of hosp staff do not realise how hard emotionally it is for family to see their loved ones going through all this and things like that can be easily avoided.  I do hope that things improve.

Naomi - big hugs is all that I can say, it sounds like you and your mum need them at the moment.  Keep strong,  you are stronger than you think

x

Hi everyone, have been silently keeping up with all of you and my thoughts are with you all.  Not been able to post but thought I would just up date you.  Alan had his op on the 15th July, 2nd debulking which has resulted in speech memory and personality deterioration.  Saw oncologist Thursday and cannot offer chemo and have stopped treatment.  Absolutely devasted my brave man, slowly losing him.  Sorry to sound so down but I know you all know what it is like.  I feeling in a dream world at the moment not able to concentrate emotional wreck.

Wedding in less than four weeks of our Son its going to be such an emotional day.

On lighter note went to our favourite tequila bar in london and had a £125.00 shot of tequila with my daughter so Alan s name can be put on the board which is something he has always wanted  Boy it was good.  He doesn t know about it and we plan to take him up there next week to show him.  We used the same bar for last 20 years very very emotional.

Strength and love to you all xxx

Well, I can think of worse ways to spend a week's worth of DLA money, good for you...!!

Sorry to hear that no more cancer treatment is being offered, but in a way it can be comforting to know that you don't have to suffer hospital trips and the associated poking and prodding around.

As always, we are all here to support you through all of your ups and downs.

Firstly, love and support to all who need it.

Today we received absolutely devastating news. I will update fully tomorrow once my sister has been informed of dad's diagnosis.

I feel broken in to a million pieces but I still got two of the best hugs from my dad today (and no-one hugs better than a dad does). I got to tell him how proud of him I am, how he's been the best dad and Grampy ever and how he has fought this ****ing hideous disease with courage and dignity and sometimes downright bad humour. He is, and always will be, my hero.

The beast is winning and now it's dad's turn to do things his way. xxxx