We Talk Brain Tumours

Good to hear from you Charlotte.  Looks as though you're doing everything you possibly can.

Wishing strength to everyone, new and old...

Hi

A year ago tonight we lost my mother in law to a GBM4.  She had only been diagnosed for 6 weeks and did not receive any treatment apart from steroids.

At the time during the illness I used this site all the time.  I sometimes posted and I was overwhelmed by the support it provided.  You were able to speak with people going through exactly the same, people who been through it and people had the disease.  It was so helpful to me on so many levels.

I surfed through the site tonight - I suppose due to the anniversary the memories are all there.  It took me a while to find it so I thought I would comment to try and get it back to the front page.  This site helped me so much and I know that it has helped so many others.  It was an opportunity to lean on someone else and also may be to help others yourself from your own experiences.

Much love to everyone and thank you to everyone who helped me a year ago

xx 

Hi there frizzer.

So good to hear from you and also we're all very happy that we managed to support you during a very hard time in your life.  We're here because we've all been through the same thing and we know that being helped is so very important in being able to cope.

We hope you're doing ok in your first year and thank you for coming back.

We'll share thoughts for your mother tonight.

Good to hear from you Frizzer.

Like you, this site was  a lifeline to me  a year ago.I hope the people still on this train are giving one another the same support that got us all through the dark days. Love to all

Cathi x

It's been very quiet on the train lately. I hope that's for good reasons.

Just wanted to post and bump us back up the listings.

With much love to everyone.

Pam

x

Evening.

My word it has been very quiet. As Pam has said I hope it's for the right reasons.

Unfortunately i'm in a position again where a bit of support would be greatly appreciated.

As some may remember my son Dan was diagnosed with GBM grade 4 in Oct 2011. He's on the third cycle of chemo. Despite fracturing his spine due to a fall whilst having a seizure, Dan has remained in relatively good health.

.However, things have started to change since April. He has been experiencing far more seizures than usual. We thought at first it might be due to stress (he got married 14th April). Despite his dosage of epilim being raised the seizures continued to be a problem. Also, the nature of the seizure has changed. At first dan would have a seizure lasting a couple of minutes whilst losing  consciouness. Now he remains awake and will have several, one after the other. Dysphasia has returned as well.,

He was admitted to the local hospital last weekend after a prolonged spell of seizures.  A CT scan was done and he was prescribed another anti epileptic drug to be combined with the Epilim (can't remember the name, his wife has now become the unfortunate keeper of the meds) also, he is back on  the Dex.

I sneaked a look at the CT results. Although I'm not a radiographer it was evident that they suspect another tumour. He has an appointment with his oncology team next week.

I'm trying to remain calm and remind myself that the local hospital has made monumental mistakes in the past. Guess I'm hoping they have again.

Wishing everyone a peaceful weekend.

Anne

.

Hi Anne, so sorry to hear about your son. My son is at the moment waiting for his next MRI, following a recurrance of his tumour (Jeremy) he finished chemo ands its a wait and see scenario at the moment.

I hope they manage to  get the seizures under control for him as I know Jay found them so disturbing. He didn't realise he was having a seizure, but to the rest of us he appeared as if he'd had a stroke. He's get up to go to the bathroom and wouldn't be able to move one of his legs and his speech would slur, all very scarey stuff., but he's been seizure free for 7 years now, even during this last recurrance.

I try to tell myself there'll be time enough for worry when I know what I've got to worry about., if that makes sense. Its hard when your child is an adult with a partner, because they're still your children, but all grown up too!

Be thinking of you this coming week, let us know how he gets on.
Kathy xxx 

Anne and Kathy,

You two are going through the same uncertain times that I am at the moment.. Kathy, you have the same attitude that I have - Worry about things when you know there is something to worry about. Kathy something you said jumped out at me- I try to  keep my mother in law up to date with everything and she also had been brilliant helping Steve when I am at work. It must be very difficult watching your son and his partner deal with things.

My husband Steve had a second resection in April and is undergoing PCV cycles, he's just completed his first one. This one has hit him harder that TZM.   Steve has had some seizures this time round. The Keppra seems to be keeping them under control at the moment. His mobility has decreased a lot, and his speech is more muddled but he is still able to make himself understood. He gets incredibly tired. I just about keeping my head afloat! I know that the journey is changing and its just trying to keep my head focused on getting him through stuff. We had a massive row yesterday which ended up us both in floods of tears and we managed to talk rawly and honestly to each other about how we were both feeling. It did us good.

To everyon on here writing or reading Steve has asked  me to ask you on here, is anyone else on PCV or had PCV and if so what kind of experience have you/your loved one had with it?

Anne, like Kathy has said, will be thinking of you this week and let us know how it goes.

Thinking of everyone on here and hope that everyone who is now on the other side of the journey is okay. I think about you all a lot. Also hello to everyone that are plodding along, without any changes in their lives and long may that continue! 

Thanks ladies for your replies,

 I'm very much in need of someone to offload all of this onto. I live alone and have far too much time to "think about things" and no one to lean on.

Marney people do think that because your child is an adult that it doesn't hurt you as much as if they were small. Someone had the gall to say to me "At least you've had him for 28 yrs, others lose their kids much younger" I could have cried at the stupidity.

My daughter-in-law is an incredibly brave young woman who most of the time copes admirably.Sometimes though, she gets so scared( who can blame her !) I will suppport the two of them every step of the way.

Zanandu keep your mother-in- law in the loop your husband was her son long before he was your husband. She will probably be a tower of strength.

Dan's headaches have returned. All the symptons are pointing to either activity in the tumour or growth of another.

On the plus side, another thing ticked off the list for him. he wanted to see Manchester City win the league before he's no longer with us. I'm so thrilled for him.

Thanks again

Anne x

Hi All

I don't comment on here very often now that I am on the other side of this journey but I still do read the posts. 

I have no pearls of wisdom to offer I'm afraid and remember with great clarity the trauma I used to experience watching Tony have seizures. It was probably the most difficult aspect of Tony's condition for me and I remember his first ever seizure as it nearly caused me a heart attack! The doctors reassured us that they were just a blip and were of no significance in terms of the progress of Tony's tumour but I still found them hell to watch. They didn't seem to overly bother Tony although he was sometimes upset when he had unconscious seizures as he hated the idea of not being aware of what was happening to him. Fortunately, most of his seizures were conscious ones and he would often talk right through them.

I just wanted to come on and offer my continuing love and support to all who are on this awful journey and in taking care of your loved ones, please don't forget to be a little kind to yourselves sometimes too.

Ann, rant away my lovely. Even when surrounded by people, this really is the loneliest of journies. Some of my more hysterical posts would make your hair curl! But nobody judges and everybody just wants to help. I would have been a complete wreck without the wonderful people on here to listen, offer understanding and provide emotional support. A more wonderful bunch of people I have yet to meet. So you keep posting if it helps.

Sending much strength to all who need it and love to everyone whether you need it or not.

Pam

x