Hello everyone my name is Karen, and my husband Steve was diagnosed last month with two brain tumours at first thinking they were metastasis but on Tuesday were confirmed as Grade lV GBM.
They were discovered during a routine eye test last month, a slight blemish on his visual field test, within four weeks he's had a biopsy and then diagnosis. The neurosciences team at John Radcliffe in Oxford have been fantastic. We're now waiting to start chemo next week and radiotherapy within weeks.
Steve has been really well until today, he has unfortunately lost his 6-12 field vision. Rang our GP who swiftly contacted the neuroscience team, and we've placed his steroids up to 16mg of Dexamethosone. This has now given him terrible cold sweats!
Well that's were we are today, I'm so glad I've found this brilliant website.

Hi Karen,

Welcome to BT Buddies, so sorry you have the need to be hear but glad you found us.

It sounds like you and Steve have been on quite a journey in just a short time, I can only imagine how difficult it is trying to catch your breath when things around you keep changing.

Firstly, has Steve's vision improved with the increase in steroids? Fingers crossed he will get used to the increase quickly and that the cold sweats will disappear altogether.

You mentioned that they initially thought the brain tumours were metastases, is Steve currently battling cancer elsewhere too?

Keep us posted on how Steve's doing, here's hoping things get better over the weekend.

Your BT Buddy

Natalya

Hi Natalya
Thanks for the quick reply,
Yes quite a journey, it feels like a bad dream at the mo, but we know it's reality!
The increase in dexamethasone was only given 5 hours ago so hoping some regain will be evident tomorrow or Sunday.
The local hospital thought these small tumours were mets, and scanned and tested for everything, but unfortunately GBM was confirmed on tuesday after the full biopsy. The worrying thing is the neurosurgeon has stated these tumours are growing very fast, from the first MRI to the second three weeks later, there was a big difference in size,. Not good!
We've talked in great depth about everything and he's got a lot of decision making to do. But I will support any choices he makes . I have to say this forum may help with some of his decisions x

Steve has had a great response to his dexamethasone and his field vision is slowly returning.

That's really great news, Karen, I am so glad things are picking up. Hopefully they'll hold steady next week and the steroids can be reduced again.

Keep us posted!

Your BT Buddy

Natalya x

hi karen,
welcome aboard altho i wish i didnt have to...in a nice way!

it is amazing what you can achieve by just arming yourself with masses of information which this site will provide you.

even though the tumour had increased within 3 weeks please dont ever stop hoping. never give up and above all dont ever feel alone. i come here nearly 3 years on and it still helps me now.

take care of yourself and each other. my love and best wishes to steve.

Gilly xx

Hi Kazzieh, Andy here, husband of Susan ( Curly Sue ). We are just a little way ahead of you on what I look on as a nightmare rollercoaster ride. Susan also has a GBM 1V and has now commenced radio/chemo therapy. Susans tumour had also increased in size between initial diagnosis and the MRI just before surgery, a period of just twelve days. Your right, its very scary. The dexys ( steroids) will help but you'll be doing extra grocery shopping as I think Steves appetite will soar because of them. Stay strong and positive ( much easier said than done I know ) by reading stories of hope. I cannot bring myself to read the sad ones. Keep smiling at one another, keep hugging and stay full of hope. Our very best wishes to you both and all those around you who will also need a hug now and again. Take care Andy & Curly Sue xx

Thank you Andy,
Steve has been so inspired by the survivors stories, we see this as a fight, and we're not taking it lying down! We're drawing our swords and let battle commence, but we're making sure we giggle and laugh a lot too.
Just saying as focused as we can. Pray you and curly Sue beat this vile disease with the same gusto we intend to use.
Bless you both and keep in touch.
Xx

Hi Kazzieh, just wanted to say hello and I hope that your husband is doing ok, the first few weeks are so scary and there are so many things flying around your head, you just can't believe it's happening to you can you?
You sound really positive and that is the best way to deal with it. I wish you all the best as you go along this very bumpy road!

Thank you, yes it's all so surreal.
We are gonna fight this all the way
I find this forum so supportive x

Steves treatment started yesterday. So far it's all a bit of a 'waiting for something to happen' mode, still it is what it is.
Glad things are finally moving, 'cos it has been alarming to watch his confusion, bless him especially when he knows what he wants to ask for but gets the words mix up. He's lost the ability to even tell the time sometimes
He seems to think it because of the dexamethasone, has anyone else found they get confused after taking these? . (although Steve has a tumour on the frontal lobe which correlates to the confusion, I would be interested to hear if anyone else has experienced this confusion with the steroids.
Hope everyone else is well and battling on x

Hi Kazzieh, Susan does have mild confusion and sometimes struggles with time, but I think its all part of the package really. The dexys are to counteract the swelling of the brain, or at least that is my understanding, but there are numerous side effects. As you say, the frontal lobe controls thinking processes so that will not help matters. I cannot say that we would blame the dexys solely for any of Susans confusion, like I said earlier I think its all part of the packeage.
We are in week five now but Susans bloods took a significant drop this week so the chemo has stopped. We are hoping blood tests on monday will show its ok again.
Fatigue has been the biggest problem lately, Susan could sleep the clock round.
Chin up. Hugs all round
Andy

Steve is in the middle of his treatment which is going well so far. Just wondered if any other GBM patients are showing signs of anger and short temper? If so how do partners cope with it?

Hi Kazzieh, in the early stages of radio/chemo Susan was, mmm, how to I put it, a bit sharp, quick to condemn, which was out of character. This is not maybe what you are descibing I know, but of course everyone is different. At first I found it a little hard but then realised and told myself on each occasion, " Its not Susan, its the illness ". Thats how I cope. I have found that it has faded a bit now and she is much more herself. Don't know if this helps but hope it does a little. Best wishes Andy & Susan

Hi Karen,

I've just read your story, Garreth was fairly lucky - strange word to use in this situation!! - He didnt suffer from many side effects of chemo, but he is short tempered at times, I must admit, I take it up to a point and then I am straight with him and say enough is enough, we are all going through this together and he usually apologises. Must admit, his Mum gets it more than me!!

Lynn xx

We've kept most people including his mum away, he used his immune system dropping as an excuse lol, mind you I was glad about that I can just about tolerate his mum for 20 mins max.
The funny thing is he cannot remember what he's said half an hour later.
Still i just tell myself it's the tumours and not him x

Things are changing over this long weekend, I'm not sure if it's the swelling or what, but Steve is getting confused again, and starting to shall we say become erratic. Wants to do a lot of Unachievable things in the house and garden! I feel exhausted myself. Yesterday was just an endless round of food! It's so hard he wont have anyone in the house and gets angry if I invite people over the threshold, my brother only came up to drop a set of keys off and just poked his head around the door to may hi, my daughter was mortified at his reaction, he's paranoid someone outside the loop as he calls it will give him a cold! Gosh sorry just needed a rant! Hope everyone else is okay x

Hi my name is carole
My son was much the same in regards to both mood and food, he was very good about close family, ( even though as you say there behavior is very erratic) and he was like some giant baby bird constantly wanting to be fed and trying all sorts of bizarre things that he never ate before, and wanting to try all sorts that he thought might cure him. He also wanted to eat at weird times, and often I would get a text asking me to cook this or that, ( green pea soufflé one time). The mood is very hard to cope with but sometimes you just need to tell them to be bit more tolerant, ( the steroid do all sorts to the mind ) cause strange sleeping, strange thought patterns etc. and they also feel that folk only come to see what they look like this week. of course for them coping with the change in their appearance with the steroids does not help. have they offered you any counseling especially for you husband, ( they tend to do it discreetly ) while they are having treatment. Imagine the fear that they are going though and not able to say it as they are trying to protect all around them. while you are going through it also ( in some ways worse than the patient) my heart goes out to you and all I can do is send you strength and courage.

stay strong and know you are not alone.
its a dreadful journey for the person dealing with the tumour but people can often forget what the spouse/family member are going through such turmoil also.
keep ya chin up
xx

I've just read your last few posts, so sorry you had a rough time, it's very hard isn't it?

You are running around looking after them, being kind and loving and then they turn grumpy, aggressive and demanding! Sometimes I want to throw Marks food in his face!! Or tell him to go and make it himself!! The steroids do make their moods change quickly.

Mark had a stage when he wanted to do things on the house and garden, I went out for an hour or so back in the winter, came home to half the contents of the garage in the driveway, he'd been lugging it all out one handed, he was unwell for a couple of weeks after that! And in march he made me take him out to buy an expensive new lawn mower and then proceeded to try and cut the grass one handed which later that night gave him the worst seizure he's ever had and he hasn't been right ever since!

You must be finding it hard not being able to have anyone in the house, I can understand Steve's thinking as Mark is the same, though he does allow family in the house. You need the break to, I have a large family and they are always happy to come and "Mark sit" as we call it so I can get out and have a break, us carers really need a break sometimes, even if it's just to go and have a really good cry in the car! I hope the weekend gets a bit better for you and that Steve improves

Sending you a big hug, Charlie xxx