We Talk Brain Tumours

Hi Naomi, Pete & Kerry 1045

Thankyou for your replies - it is difficult to stay away

Not objecting to change but find it frustrating that it is so slow and you have to click many times to find us - why can't it still be called forums it's now discussions.

I suppose it will settle down.

As you say, I often search for newbies and point them in the right direction - doing my bit to help and support others.

Sadly, this experience will never leave any of us but our strength is knowing how everyone feels and how devastating a BT is.

I will pop in from time to time to see if it gets better

Sending you my love and strength.

Take care

Ann x

Ange - I hear ya and echo everything you say. I have spent the last year with my dad and have said/done everything we needed to. Each night that I say goodbye to him, I say it as if it will be the last time I ever do. I am terrified of being there at his "end" and would do anything not to be but I am feeling incredible pressure from my mum and sister to do so. My 13 year old daughter came to see him today and she was terrified and very shaken. Goodness knows how your daughter does it.xxx

At 1am today we were called up to the hospice as dad's breathing was incredibly mucousy and laboured. They told us he would be unlikely to make it through the night - but he did. He is in a deep, deep coma now - no longer any eye/eyebrow movements or hand squeezes. His feet are a horrid purple colour and freezing cold (as are his hands) but the rest of him is feverish and sweaty.

The nurses are astounded he is still fighting. The fact that he was so fit and active prior to his illness is proving to be detrimental to him now as his heart just keeps on going. He is fitting almost constantly (he is on a mixture of diamorphine and four different sedatives and apparently breakthrough fitting is almost unavoidable) and technically his choking episodes should have killed him.

I just want him to let go now. I tell him every day it is time for him to be free from this body and start the next phase of his journey. I can't bear to watch him suffer like this (although the mucousy breathing is apparently far more distressing for us than it is for him).

Oh well, I'm off to bed - not sure how long for. We shall see.

Thank you to all who have left me lovely supportive comments, much appreciated.

Love to all,

Naomi.xx

Naomi, sending you love and strength and hoping your dad is peaceful.  Must be a terrible time.  xx

Ange, love and strength to you and your daughter x

Everything is surreal with this damn illness, all seems a bad dream yet you do just get on with it, with each phase.  I sometimes forget that weeks ago, mum was a lot different to now, seems like we have just lived like this for a long long time.

Ann - Pete and Joanna are right, us newbies need everyone on here.  I would be lost without this so please stay with us x

Again, strength and love to you Naomi.  Your father's torture is almost over and he'll be free of it soon.

Naomi,

I have only just read of your situation. I apologise for not finding it earlier.

My thoughts are with you and your family for a peaceful conclusion to this dreadful turmoil. Martyn XXXX

love and strength to you Naomi, can t really convey in words what I want to say to you honey xxxx

Ann please please remain on here.

Pete sending you a huge hug.

Cat please keep on the vino makes me not feel so alone lol and jms and all please joint in.

Feeling pretty low today, this horrible devasting disease Y Y Y Y should any one have to endure this.  One thing is certain we all know what we are going through and how hard it is, on all of us and our families.  I am dreading the final stages.

I find it so hard to comprehend that the professionals have effectively said no more treatment and just a waiting game for Alan. I just keep looking at my man, emotions have to be put aside, want my man back.   I know you should live each day as it comes and think positive but it just gets harder and harder

Tonight when I get in from work I will raise a glass to each and everyone of you and your loved ones.

Julie xxxx

P.S. Mac site if is wasn t broken y change it??   We all rely on this site so much and such a shame finding our supprt so difficult to get hold of !!

Thank you so much to everyone for their lovely comments. Ann - PLEASE don't leave us. You are a wealth of useful information and we'd be lost without you! I have no idea why they changed the site, we will get used to it, I'm sure.

Well, I'm pretty certain that someone up there doesn't like me. At 10.30 last night, within five minutes of each other, my two youngest daughters started projectile vomiting .... Fortunately dad didn't change much overnight so I didn't miss anything important with him. Today I could only get to see him for an hour - my husband's lunch break - as I have the pukers and the baby at home. I will go again as soon as my husband gets home from work tonight. Dad's breathing is so laboured and noisy now. He is having to work so hard for every breath. I was quite shocked but the hospice nurse told me it is going to get a lot noisier than that! He keeps fitting and they don't seem to be able to get on top of it despite changing the drug combination is on. The doctor said it's down to rapid disease progression and there isn't a lot that can be done to help.

When dad had his biopsy he was left with a sunken hole type scar on his scalp. It is now bulging outwards like a baby's swollen fontanelle. It is apparently the tumour pushing everything out of its way.

And so we continue to wait ....

Mum has asked me to write dad's eulogy and despite the fact I can normally write for Britain I now can't think of a single word!

This is a sensitive subject but I am hoping someone can help me. As a family, we have decided we would like to donate dad's brain for medical research in to brain tumours. Does anyone know how we go about that?? He said at his day hospice he would like to do it so we know it is what he would like too.

If there is any change with dad, I will update you later tonight. The medical mystery of the year award has to go to my dad for, despite now being on his sixth day without fluids, the man who is still weeing!!!!

Love to all.

Naomi.xxx

I forgot to add something - remember a while back when I wrote about how distressed dad was about being able to smell a horrible odour that the rest of us couldn't? It drove dad mad for weeks. Doctor said today it is what happens when the tumour protrudes in to the sinuses, that's where the smell comes from!

Naomi,

That's a wonderful & precious gift your father is giving after he leaves you all and continues his journey - whatever & wherever that may be.  I am sure if you ring his oncologist/team they would be able to help you with regards to his donation.  Perhaps someone at the hospice may know, or have been asked this before.

As is usual lately, I have sat here reading the posts (I have skimmed through them all for the last 5 pages) with tears streaming down my face, a lot of you seem to be having such a hard time right now.  Ange, is there no one you can ask about what's best for your daughter right now.  Has she expressed anything about whether she would just like to say goodbye now and not go to see him anymore, there probably isn't a wrong or right thing to do, just whatever is best for YOUR daughter and you probably know her best of all.  (((((hugs))))) to you both.

I must add, I got here first time today - no time outs, no white pages - probably jinxing myself now but what the heck!!!!!!!!!!!

No more painful skull bolts so I assume Voldemort has taken my advice and is shopping elsewhere now.......still I keep my lipgloss wand at the ready in the pocket now, just in case ;)

Lastly, did anyone see the 24yo on This Morning last week, he has an inoperable brain tumour and is taking DCA and ingesting cannabis resin, he thinks its helping him as the tumour showed a slight reduction on his last scan and said at the very least, deserves some more research????

Love & strength to all who want or need it.

ps. not proof read this, so please excuse any typo's or strange words that may have inserted themself when my alter ego fights for attention lol

Dear All,

Getting rather frustrated and anxious trying to find my way around the new set up, and I know it sounds hackneyed, but I would echo what a number of people have said, 'if it ain't broke, don't fix it. The picture up on the left side of the page, I thought looked like a piece of barbed wire, it was only when I looked at it more closely that I realised it was a signpost !

I have managed to catch up with the posts and my thoughts are with so many of you and what you are going through... Ange, Naomi, my love to you and willing you the grace and strength you have shown throughout the time I have been following your lives, to continue, as I know it will.

As Sworthy comments, this all seems so unreal, and yet we have no alternative, but to go forward with, certainly in my case, faltering courage. It isn't so much the practical, physical aspects, although this brings me up short sometimes, when I consider the things that Dave now needs assitance with, it's living with it in my head. I sometimes just wish I could switch off the thoughts...

Dave was improving all round quite well last week, but then ended up in hospital on Friday night, having had a lengthy seizure. Very tired over the week end but seems to be picking up today. I have extended my leave for the next few days, as I am concerned about leaving him for what is usually about 10 hours a day when I am in work. Back to The Christie Hospital Wednesday for resuts of the last MRI Scan.

Does anyone know, how to go back to correct trying mistakes on this new site ? The cursor doesn't seem to move back...

Thoughts and best wishes to everyone tonight.

Love,

Elaine B.K.