We Talk Brain Tumours

Hi all,

I'm really sorry to hear of everyones sad times of late.

Deli, i am truly sorry that your dad appears to be reaching the end of this journey. I understand only to well the helplessness when you hear those words along with the mixture of all the other emotions! Sending you lots of love and strength.

I cannot believe that 20 months ago i had never even heard of GBM. 5 months have now passed since i lost my mum to the disease and today another family friend has also succumbed to this vile disease.

I know i don't post on here very much since losing my mum but i'm just feeling overwhelmed by emotion today. I just feel so angry and bitter about everything that has happened and don't really know where else to go where people understand. Sorry to bring a very sombre mood to the thread. It just doesn't get easier to cope with these intense feelings when they come, which they unfortunately do very often still!

Martyn, i just wanted to add my name to everyone telling you that you are truly an inspiration in the way you continue to care for Doreen (as are all the carers on here) and everything you do is in her best interests. I hope Doreen has picked up a little now and you are also feeling more like the amazing carer you are! Sending you both love xx

Welcome to all the new people as well, you will find much amazing support on here.

Love and hugs to all, Lou xxx

Lou, I'm sorry you are having such a difficult day today. Nothing I can say will make you feel any better but go easy on yourself. It's very early days still. Baby steps and all that. Thank you also for your kinds words about dad, it helps to know someone understands.

Welcome back, it's nice to hear from you again.xx

Popping by to say hi and send love & strength to all those who want or need it.  Hoping everyone can enjoy their Bank Holiday, just a little maybe?

Bank holiday here was the same as any other day, just slightly different things on the TV.

Ali's sugar levels came below 10 for the first time in weeks this morning, so a minor celebration there.

Not much else really to report.  I hope that everyone elses quietness is because they're having some good family time...

hope everyone managed to enjoyr the bank holiday.

Pete - glad to hear that Ali's sugar levels are down, hopefully she will start to improve more now that seems to becoming under control.

We've got the onc appointment through for tommorrow as it is now 6 weeks since Nick's treatment finished,  hopefully it will be good news.  Not expecting them to scan him for another 4 weeks but hope they scan his lungs so we know if the blood clots are starting to thin.  Had to arrange for an ambulance to come and take us as I can no longer get him out of the house and into the car in his wheelchair so looks like we are in for a long day!

Thoughs are with everyone. x

Afternoon all.

Pete - that's good news about Ali's blood sugars. Is she any more alert? Fingers crossed.

Liz - good luck for tomorrow. That's what the ambulances are there for, it will be much for comfortable for Nick than getting in and out of a car.

I had to go and have some blood tests today and it happens to be in the same place as Oncology. I have been keeping it together recently as I feel if I break down now it will be a slippery slope downwards. Anyway, I saw dad's oncologist. Of course, dad has now been discharged from oncology in to the hospice team's care but it shook me up seeing him (ridiculous eh?). I was watching the patients come in, some very obviously brain tumour patients due to scars on heads/being so similar to dad and I saw a girl come in with her mum and dad. She looked about 15. She had two scars on her head but I don't know if it is a brain tumour she is suffering from. She was bald and had the steroid bloat in her face and still so beautiful. It made me cry. I am so bitter about this disease, no-one deserves it and especially not young people. It was just so surreal having been to dad's treatments with him. So when it was my turn to have my blood taken I was so sad that I wouldn't bleed. Had to have four gos at getting my blood.

I hate this ****ing awful disease. I hate that it usually wins. I just hate all of it really.

Love to all.

Naomi.x

Hello to everyone today,

Pete - am glad Ali's levels are improving.  Another hurdle overcome!

Naomi, I am with you with those thoughts about this evil illness, I can't believe what this illness does to a person and how much the patients have to go through, it seems like as they conquer one part of it, they are hit with another.  Im so glad your dad got to see your son walk and yes the timing of it, is bittersweet.  Big hug to you.  My mum's case is being managed by the hospice now and we have had dfferent doctors telling her and doing different things with her pills, all I can say now the hospice is involved is how relieved I am that these specialist will work together and her meds should now be sorted.

Lou, I am sorry about your mum and family friend. Am sure you will know exactly what I am going through losing bits of my mum day by day.

My mum went into the hospice on Friday, just for a rest, to assess her and juggle the steriod dose.  They seem to think she may have up to a few months which seems strange as apart from her left-sided weakness, which means she can't get about alone, she is confused at times and a bit weepy at times but otherwise seems better than she has in ages.  She really feels well too and god bless the hospice!

I have read many of these posts now over the months which say 'moving us up' I hope I don't offend anyone but wondered if I could ask what this means?

Love & strength to all xxx

"Moving Up" basically means putting a reply on the thread so that it moves back up the main list again - it helps the regulars to find it again easily (and helps other sufferers/carers to see it).

Even though Ali's sugar levels are lower, her symptoms remain the same - she is sleeping for most of the day apart from meal times.  She's now too weak for me to be able to hold her standing while the carers clean her, so almost everything now needs to be done on the bed (which is more comfortable for her and less effort for me).  Her speech is also a lot less than it was before

It's looking as though we're now classing her as "bed bound" rather than "bed and chair bound" as she was before.

She remains comfortable and unstressed though and remains aware of her surrounding and who people are.  Her higher brain function seems ok (apart from short term memory), the tumour is affecting her lower brain function (sever right side weakness, speech, and sleepfulness).

SWorthey, I'm pleased your mum is feeling so well. Please feel reassured - from March to June this year my dad was phsically really well and even managed to get a way for a short holiday. I have learnt not to take much notice of doctors' timescales. My dad was given three months, then six, then nine. Almost a year later he is still here. I wish I hadn't listened as for a large proportion of time we were constantly watching him, looking for signs he was getting worse. Ah, hindsight is a wonderful thing.

Pete - really all we can hope for is that our loved ones are comfortable and peaceful and settled. The fact that Ali is aware of her surroundings and knows who you are must give you both great comfort. The day dad wasn't really sure of who I was broke my heart. The hospice nurse said to me he might not be able to put his finger on exactly who I am but he knows he loves me and I'm familiar to him. I'm happy with that. It sounds like Ali is getting really good care, must be one less thing for you to worry about. Does she have any trouble with bed sores or is she still able to move around in bed? Sorry for such personal questions Pete.

Deli, you are so right to tell others not to take too much notice of the doctors timescales.  All the docs can do is give us statistical info, but us humans are individual and rarely do we what are supposed to (or is that just me I wonder). 

I had my surgery in Jan 2009 and was told 2.5 to 3 years......I am just going into my "best before dates" now and thankfully have little change since RT finished.  Of course the flipside to the BT coin is that, we can be well one day and in hospital the next, so neither can we take anything for granted! 

I have not had a day go by since I was given that prognosis that I haven't thought about the bloomin thing that was in my head and will come back.  I often plead with Buttercup (my tumours name) to let me at least see the kids out of secondary school.  My youngest is 13 so statistically I have little chance.  But I am NOT a statistic and will fight it as long as I can.

Pete I am glad Ali's sugar levels seem to be stabilising, but sorry her symptons have not gotten any better.  I am glad she is comfortable and aware of her surroundings, you do such a great job as carer, as ALL the carers and family members on here do.

As usual I will leave by saying love & strength to those who want or need it.