We Talk Brain Tumours

My son recently had operation to remove some of ependymona. Couldn't get all of it so starting chemo, then will have radiotherapy. All incredibly scary, he's only 7 and coping so well it's incredible. Feels incredibly lonely so this site should help get some answers and support I am hoping. No prognosis been given and I don't want to know as will only think positive thoughts, can't cope with negative ones. Lifes changed so much since first found in in January. It's just horrendous and wish it wasn't happening to my wonderful boy. It's so unfair, he's fabulous and nobody deserves this, least of all a sweet seven year old. Don't know how managing to cope so well, on an emotional roller coaster and rushing from hospital to home alternate days to be with daughter who's staying with grandparents. Would be totally lost without them, they're wonderful but exhausted too and incredibly worried and also sad. So positive thoughts my way please....!

Oh Pam love so sorry to hear of Stuart leaving you. 5 months such a short journey. Like our other wonderful Pam your celebration of stuart's life sounds perfect. Together til the end.... Sending you much love and strength.

Denise xxxx

Angela

Hi love sorry you have joined our train. You are in the right place surrounded by wonderful people who can offer love support and virtually answer any questions you have.

I know these first months are just like a dream state of trying to believe what is happening. Rushing from hospital to hospital. You will find strength you never realised you had and we will send positive thoughts and much love your way.

My husband was given between six and eighteen months in August last year. He is still with us and apart from terrible mood swings is really still fighting fit...He was very well after his RT and Chemo perhaps just a little tired. I know every one is different.

Am sending much love and strength to you and your little boy.

Stay strong

To My other wonderful Pam I am going to miss you sssooo much . Hope Tony's celebration of life goes well. You take care. I know you are going to be okay and will always send love and strength your way..

 

Love and peace Denise

 

Sorry just re red my post Chris was diagnosed in 2010( not last year)

 

Much love Denise

Hi Pam

Stuart's celebration of life is also on Friday  ......

 

xxxxxx

I just had the notification of my probate interview through this morning.  It looks as though they're happy with the figures that I put onto the application form.

From the covering letter, it looks as though the interview will last about 5 minutes and will mainly involve them wanting me to swear at them.

I think I can manage that.

Things have been very quiet here over the weekend.  But I'm still here reading and I'll continue to support people as much as I can (well, the best I can since you're all girlies and I am just one man).

Hello everyone

 

Justine was due to start her Week of Chemo today but when she got to the hospital they were not ready, Appartently a mix up with dosage, i mean How the hell is that possible. They maybe ready tomorrow. Im so annoyed and its upset everyone

 

They are booking her in for a scan as her speech is slightly slow and she has pins and needles in her right arm and hand and they want to have a look to see if there is a reason for it, and yes i think everyone is now slightly worried. Just after her operation she had a right sided weakness and would automatically use her left hand for things, i wont if this is related, biggest worry is that it has already grown.

 

Hope everyone on this awful train is as well as can be

Hey there.  Sorry to hear about the delay of the chemo.  Hopefully, a delay of a day won't cause too many issues.

Pins and needles and other symptoms may be equally caused by swelling around the tumour or by the tumour itself.  Hopefully, the scan will show up something tangible enough to be treated.

All the best of luck to you.

Thanks Pete much appreciated.

She eventually got her Chemo drugs this afternoon but cant start them until tomorrow so effectively this delay has ruined our weekend plans now. Justine was hopefully going to be coming back to the football with me but now she wont finish her Chemo until Sunday :-(

 

It is normal for her to still be so tired and sleeping so much? She slepted for 16 hours yesterday. Its been 9 weeks since end of Radiotherapy and 3 since last dose of Chemo, will this tiredness just continue now until the end of Chemo? I never know what to expect

 

There really is no "normal" where it comes to brain tumours, it's just a matter of coping with what lands in your hands.

Drowsiness can be due to swelling that can take a long time to calm down.  It may or may not get better.  Ali had her 5 weeks of RT and was drowsy afterwards.  We expected a lift in her condition, but it never appeared, she unfortunately slowly got more and more sleepy as time went past.

Of course, Justine is Justine and may well react completely differently.

At least, if Justine is sleeping, then she's most likely not suffering any pain or discomfort, so take that as a positive.