Hello, this is my first visit to this forum, or any forum ever!

My name is Charlotte and my husband Mark who is 38 was diagnosed with a GBM IV in September last year (2011), we were also told he had a second tumor that was in its early stages and most probably benign. He was seen very quickly by Kings and was in for a biopsy within days and had started his radio and chemo within 6 weeks.
His radio went really well and the amazing radiographers were able to map his treatment so that they could get both tumors at the same time even though they were on different sides of his brain! He is now on his fourth lot of monthly chemo and has two more to go. We got the results of his first MRI a few weeks ago and it showed no change so far which is what we were warned would probably be the result due to his brain still being swollen from the radiotherapy.

There have been a few up's and downs, mainly to do with his steroids, the Dr's would suggest he started cutting them down but his brain wouldn't like that and it would be trips to hospital etc!

He has been amazingly positive from the start which keeps me the same, even though every day is hard. It's been so good to find this site and be able to see that there people are out there who know what he's going through but also what I'm going through. It's a long road for all of us but with love and support we can get through it!

Hi CharlieB
Its a bit nerve racking isn't it posting on a forum for the 1st time?
My son is the one with the tumour,(he's 43 now) we call it Jeremy and we've been on this journey for 8+ years now.
I'm sure you'll find this site very supportive and there will be many people who know exactly how you are feeling.
We were told to talk, talk and then talk some more, it really does help.
Do you have family near you? We have found that by going with our son and his wife to the hospital, it one supports them and two we often remember things the oncologist said that they miss.
I just wanted you to know someone had read your post and replied to you, so will go now and hope to speak to you soon.
Kathy

hey charlotte,
sounds like youve both got amazing attitudes which is half the battle.
wishing you luck for the journey ahead.
gill x

Hi Kathy

Thanks for your message, I read your son's story earlier, everyone on this site is inspirational. Yes we have my family very close by and they have been amazing through all of this, dropping whatever they've been doing in an instant to be with us and to take care of our 3 year old daughter when we've had to rush off.

Our friends have been amazing too, we actually had too many people wanting to take him for his daily radiotherapy, we had the whole 6 weeks booked up and we had to turn people down! I cannot thank any of them or our families enough.

All the best to you and your family
Charlotte

Hi Charlotte,
I've never been much at forums either, but it is great to have this one. My husband also has GBM. He was diagnosed nearly a year ago at age 53. He also has a great attitude, which makes things easier for everyone, including him. I'm sorry that you have to face this, but it sounds like you have lots of support.
All the Best,
Carrie

Hi CharlieB,
So srry to hear that you are in this awful place but you are right that when there are people around that have similar experiences it can help a lot. Yes, every day is hard, but strangely I found that once we had come to terms with our situation it got easier to get through each day, as it soon becomes the norm. Yes, we still have dips, how can you not, but staying positive, as Mark is, is the way forward. We try to just carry on doing as close to normal things as we can. The steroids are amazing, a necessary evil maybe. The certainly help Susan immensely in one way but as she is diabetic type 2 they send her blood sugars into orbit so we are constantly trying to manage them as well. The ups and downs you mentioned could not be truer. I call it the rollercoaster ride from hell, after one high you can sure of a scary bit very soon, but you come out the other side and carry on.
Our very best wishes to you and Mark and all those around you who also need a big hug now and again, keep in touch
Andy & Susan

Hi CHarlotte,
As a fellow wife, just wanted to say hi, and give you a virtual hug, it's a very hard journey of mixed emotions and up and down days, I'm almost on autopilot at the moment I don't know about you.
It seems to be and endless round of making food! Lol
Keep in touch x

Thanks for your comments!
Yes those steroids are evil but very necessary, Marks tumor is on the left side and right on his motor function, that was actually his only sign that anything was wrong, his right arm and hand gradually lost it's use, he had no other symptoms. But when he gets any brain swelling his arm (which has been improving a lot, a good sign!)and leg on his right side get very bad and he ends up being unable to walk, use his arm and sometimes not even talk, but we up the steroids and he's bouncing around and talking non stop within a week!
This is what's happened this week, he's had an infection in his finger and the steroids were trying to fix his finger, so brain swelling followed and that was closely followed by us all going down with a nasty bout of flu! He's on the mend now, slowly but surely, but as you said Andy & Sue, it's just one of the downs, now we're hoping for an up!
We hope your treatment continues as well as it can, it's so very tiring, Mark still gets waves of exhaustion from it now, it's a long slog, but worth it we hope!!

Thankyou for the hug, sending you one right back!
Yes it is autopilot but once the radio's done it does get easier and unbelievably becomes routine and normal!
It's so hard though as a wife (or husband, Mum etc) trying to keep calm and positive and doing what they need when inside you're so terrified and just want to scream!
Keep strong, and it does in a way get easier x

Hey guys, Charlie B n Kazzieh. Your so right, autopilot...calm, positive...underneath scared to death and wanting to scream. Bit like the swan syndrome really, calm and serene above water, but paddling like hell underneath, thats definitely me. The dialogue is good, times are tough, thanks for being around.
Andy

Not such a good couple of weeks, Mark's suffered badly with the flu and has still been waiting for the brain swelling to go down, he's had a few more falls and has been sleeping downstairs on the sofa bed as he couldn't get upstairs.
He has finally picked up but his energy levels are very low and my weight levels have gone down due to all my worrying about him!! He also had (finally) jis first sessions of occupational therapy and physio which were so, so helpful and came at a good time. They showed him how to get his leg moving and his is a lot more stable now, so that's a relief!
Bad news is his oncologist has put his chemo off for the next 2 weeks as he still has a chesty cough and she said if he takes it now he'll probably end up in hospital with pneumonia, which we really don't want! Also his blood sugars are sky high due to the increase in steroids.
Hope everyone else is doing ok

Hi CharlieB and Mark, wow you guys have certainly had it rough. Hopefully there is a big upswing just around the corner. What steroid dose is Mark on and what diabetes meds. Susan is only on 6mgs of dexamethasone but its enough to send her bloods high. We changed her times etc for her diabetic meds and it helped. The occ therapy and physio is a good start to things improving. Lets hope it continues. Best wishes Andy & Susan

Hi Andy and Sue, how are things going for you?

Mark was down to 2mg of dexa but is up to 4mg now and that's all it's taken to send his bloods high. He isn't on diabetic meds, his oncologist and GP aren't keen on him going on them so we check his blood sugars 4 times a day and have to be careful about what he eats. Once he cuts back down to 2mg it'll settle down!

We all have better and worse times in this game, hopefully we'll be on a better one soon!

I've come on here tonight instead of ringing my family, I feel they need a break!
Not having such a good time of things lately, Marks had a few days in hospital in the last week, he had a high temperature and was in a lot of pain with headaches, which he never suffers from.They took him in and said he was dehydrated so he was on a drip for a few days and also pumped full of steroids.
He picked up really well and was discharged a week ago today. By Tuesday he had headaches again and spent the day in bed. I rang his oncology nurse and she was very surprised that he'd been told by the hospital to go back to his normal dose of steroids as he'd had a lot of them in hospital and should've been told to take a higher dose -this wasn't our usual hospital that he's under, we couldn't get into that one so ended up in our local A&E.
He had a good 3 days and then yesterday was bad again, better again this morning, but it started again about an hour ago so I packed him off to bed.
I'm not sure what's going on, he's drinking gallons of water, taking more steroids and resting, but it's still happening. He was also on chemo last week so I wondered if that could be anything to do with it?
I'm also scared, when it keeps reoccurring it makes you even more paranoid and my imagination goes into overdrive.
on the other hand, the problems he's had because of the tumor, his right arm and leg not working very well and slurred speech have all got noticeably better in the last couple of weeks.
I hate this!
Ok, that's my chest cleared! Hope everyone is doing as ok as you can, keep strong!!

sorry it's been tough Charlie, , it's so hard to stay positive and focused when these duff days arise, it's horrid isn't it. I Just try and take it day as it comes, and look back at the end of the month and say well he's had 5 or six bad days out of the month, or however many days it is, it kind of makes all a little more bearable so to speak. Lots of hugs honey, this forum is great I came on here the days Steve and I had a row, but i realised it was his meds/tumour shouting and not him. Count every day with him. Last night I had a bit of a bad dream, and woke up a little perturbed, I just touched his hand and I instantly felt calmer, but I know I may not have this security in the future. Its moments like that I contemplate his borrowed time.
I don't know how you hold it all together with a little child too. bless you honey xx

Hi Charlotte,

So sorry Mark is having a bit of a rough ride right now I can only imagine how difficult it is for your mind not to go into overdrive.

When is Marks next appointment with his oncologist? Is it possible to discuss Marks current situation with his specialist nurse and see what thoughts she has?

Have you noticed whether the headaches seem worse at any particular time of day?

It's good to hear that Marks recent symptoms seem to be doing a bit better, hold on to that.

Thinking of you both.

Your BT Buddy

Natalya x

Thankyou for your comments, I was pretty stressed out last night! Mark was feeling betrer this morning, but I decided to give his Oncologist nurse a call, I'm taking our daughter to Disneyland Paris for the day tomorrow and Marks mum is coming to spend the day with him, I wanted to see what they thought could be the problem.
I mamaged to actually speak to his Dr who was very calming and really put my mind at rest. She said that the headaches I was describing didn't sound like anything we needed to worry about and he is probably still suffering from the results of being dehydrated which is how he ended up in hospitaln and also now being on a higher dose of steroids.
If the headaches continue into next week she will book an appointment for him. so that was all very reassuring and I calmed down!
I can now enjoy a day out with our daughter tomorrow knowing he's as ok as he can be at the moment.
And you're right Kazziah, I am so grateful for every day I have with him, because we don't know how many more there are, so cherish each one, even when they are being grumpy!
thanks for the support xxxx

Hi charlieB just a hello to catch up with you x

Hi Kazzieh, how are you doing? How far along is your husband in his treatment now?

I hope you are managing to cope, I know it can be so hard.

We aren't too bad, we saw the oncologist last week, she was pleased that Mark had improved since last month and has booked his next scan for 25th June, I live in terror of that day, I hate scan days!

He's just today stared his 6th and so far as we know for now, final cycle of chemo.
He's in bed at the moment as he has a "chemo headache" as he calls them. He's been very tired the last couple of weeks and is having a lot of sleep at the weekends. He still works from home 3-4 days in the week, so I don't know if it's that that's making him tired by the weekend or the chemo effects are finally catching up with him, or a bit of both or if it's something more?? I hate not knowing!

So we have his scan coming up and then are back to the Oncologist on 4th July, so we have a litle more space this month before going back to hospital, which I feel so sick about every time I think about it, we don't know what our news will be on that day, no change, it's grown, it's shrunk, there's nothing to be done. I'm trying the best I can to prepare myself for every outcome, which means a fair bit of crying on my behalf!! Not in front of Mark of course!

I hope you're ok and everyone else out there who's on this hellish ride, keep strong! xx

I think thats half the problem, the not knowing and the waiting between scans and oncology appointments.
Jays next scan is 8th June and he sees his oncologist on 28th. He seems well at the moment, no 'symptoms' as such, but you just never can tell.
Stay strong, time enough to worry when there's something to worry abut. (At least thats what I tell myself!)
Kathy xxx