We Talk Brain Tumours

Morning all......and welcome to all the new passengers. It is so sad to see new people having to join....there is no end to this and I hope everyone who does join finds the same comfort and understanding that I have from the Forum.

Dawn- I know nothing about Teratoma other than it is very rare. We have all been fixated with GBM4- but I am sure that there are people on here who will have the knowledge. I am so glad that your son's tumour is shrinking.

Wendy- I hope your husband is better today..I used to find that the price for taking Mark out was a couple of days of his being absolutely exhausted and being confined to bed. However ....it is a price worth paying . Tell your husband that he should expect to feel tired after an excursion and that he should have a bed day  before the next trip. I think fit able bodied hard working men and women cannot understand why their body is letting them down and not behaving as they want it to ..or as it did before. I hope you get to Henley.

Sometimes its hard to explain to anyone who has not experienced this disease...the shock, bewilderment, anger, fear....but this is the one place you can spill it out.......because everyone on here knows exactly what goes on in the life of a BT home. Sometimes we can even laugh. Its a different life to the one we had, but we all do get through each day somehow.

Love to everyone Cathi x

Morning SWorthey....I would hit the wish list. What have you got to lose either way.

Glad all you guys have such lovely weather......The gloom up here suits what is going on in our lives at the moment . Normally I would be cursing BBC Weather report for chirpily going on about the high 90s South of Carlisle

Cathi xx

Thank you all for your replies.....BT's are nasty blighters aren't they.....In a way, I feel that Nathan seems to be suffering less with his teratoma, than every body else is with the GBM (hope that's right).....I didn't realise there were so many different tumours!.....I have read (and laughed) at the replies on here, and it amazes me how up-beat most people seem to be, regardless of all the pain and suffering that is going on.....I am still in the "why Nathan, what has he done" stage....I have good days, along with bad, and am pleased to be having more good days lately. He has 4 weeks of chemo left, followed by his MRI scan....I think surgery on the cysts will be in August, and dependant on the outcome of the scan, they may (if need to/or if possible) operate on the BT too.....Off to hospital now for smelly sweetcorn infusion!!! ....If only we had smellyvision on computers, I would let you all have a waft!! I hope you all have a good a day as is possible

Dawn xx

Hi everyone, went for pre op assessment yesterday there for four hours!  Then seen by a very nice Neurosurgeon who took a while to look through Alan s notes and then start his consult by how are you feeling - Alan fine (he is always fine even if not ) and then asked are you working LOL and yes thats all I could do is laugh My very strong husband who has GBM 1V debulked not capable of working was asked do you work - this gives him the green light to get on his tractor and work don t think so but if the dr asked am I working then I can my oh my it was a classic.   Op all booked in for next week hope we are doing the right thing xx

Hi everyone,

I'm sorry I don't post very often, but I do read this thread and try to keep up with everyone's news. Love to all of you on this rollercoaster. JM7, are you from my neck of the woods - the North East? I don't know why I think that, have I maybe seen some previous post of yours where you have mentioned it? And Pete, I love your posts, especially the funny ones. You have to laugh - I know we do, especially dad, at some of the most stressful times. When dad's speech was complete gobbledy-gook after his seizure, I was the only one who could work out what he was trying to say - we came to the conclusion that this was because I have to translate my two-year-old's bizarre speech on a daily basis!

I thought I would post the latest on my dad.

Since he had his seizure, I think it was around the beginning of April, he has had a 'funny' right arm, ie it sometimes feels like it's not 'his' arm, or he gets numbness in one or two of his fingers, and very occasionally the same feeling in his right foot. His speech/reading/writing also gets muddled up most days.

At the time of his seizure he had a scan and it was fine, no regrowth, and he hasn't had any seizures since.

However, on a visit to the hospital where he is taking part in a trial for Avastin, and also receiving his Temozolomide, a youngish doctor told him he strongly suspected the tumour was regrowing. Dad was due a scan three weeks later anyway, so we have had three weeks of feeling sick with worry but trying to hide it from dad. He's very laid-back usually, but even he was feeling worried or 'disappointed' as he put it after the doctor said that (he actually said it to him twice, which is nice... not)

Anyway, he got his scan results this week and the doctor in question was very pleased to tell him that the scan was fine, much to all our relief. He said he had been convinced the news would be bad, and that he was actually dreading seeing my dad until he saw the scan for himself.

You know, it really bugs me that, during what is already a worrying and anxious time, some doctors think nothing of the impact their words have on patients and families. He's a very nice doctor, who prides himself on being 'honest' with patients, but to be honest when you don't have any facts in front of you seems pretty reckless to me.

Apparently they will keep an eye on dad's symptoms, but it's possible they are just side effects of the Avastin or chemo, or residual effects of the radiotherapy/surgery/scarring. I just hope the doctors aren't missing something.

I guess there's no point in worrying about these things until they happen - life is stressful enough knowing what the future might hold. We should celebrate good news (dad came home and had three pints, apparently!) and stick together like glue through the bad times. It's depressing to know we will probably never be free of this stress, but it does help to know there are others in the same boat.

Best wishes to all - strength to those who need it this week.

Deb xxxxxxxx

Evening everyone. Thanks for kind messages. Debbie at least you had some good news today.

JM7 - fingers crossed for the op, SWorthey - if it helps our consultant is full of positive stories for radiotherapy and Dawn - I can smell the virtual sweetcorn!

Had a truly miserable day today adn we never made Henley although my son did just about make it to his race. I had even bought a new dress and a pretty special picnic.

Clive even worse this morning and crying with pain - when he tried to eat breakfast he was missing his mouth and couldn't string a word together properly. I cannot believe the jumps this thing makes -

On advice from the oncology nurse I ended up calling 999 and he has now been admitted into hospital. No bleeding at least. He's had 16mg of dex today and by this evening was a little mobile and words a little better - he managed to blame me again for the walk!! So many tears and just when you think there cannot be a worse day one comes along.

Not sure how long he will be in for and hope it doesn't delay the start of his chemo and radio.

Sleep well everyone

Wendy XX

Hi all, just wanted to check in and let you all know I'm still thinking of you all. Jms, jm7 and catg, you all sound so sad and I am so sorry for your hard times. I had my 27th birthday today and mostly I just feel angry that my mums not here to have a glass if wine with me. Sorry to come in and be a downer, I actually wanted to give some support! Hi to all the new people since I last posted, I wish you weren't here in the nicest possible way but welcome! On a more positive note my training is in full force for the london triathlon which is now only 4 weeks away!! I have raised 700 pounds for brainstrust so far! Love and strength to all xxx

Hi Wendy,

I'm so sorry today has been a nightmare - this is such a frightening time for you.

My dad had a couple of similar incidents to your hubby, the first when he was admitted to hospital in the middle of the night with an exploding headache, where he could barely speak, and what he did say was total non-language - this is when he was first diagnosed. Then a few months later, after surgery, RT and during chemo, a terrifying seizure with convulsions, where he had to be admitted to hospital, again with those symptoms bar the headache, so I know how stressful and frightening it is.

During those times I remember praying and praying (as someone who is wholly unreligious!) that we would get another chance at 'normality'. We did, and now I never ever take the good days for granted, knowing full well there may be bad days in the future.

I hope you get some normality back soon, ours started to come back when dad was put on 32mg of steroids (gradually weaned off them over a few weeks) after he was first diagnosed. His tumour was found in the left parietal lobe, also affecting his speech/understanding. I wonder why your husband can't have surgery - could it be due to the size of the tumour, or is it in a slightly different place to my dad's? His was about 1.5in across. Fortunately the tumour was debulked, and followed by six weeks of radiotherapy and six months' temozolomide. Hopefully the steroids will bring most of the old Clive back to you soon, then the treatment will shrink his tumour and hold it at bay.

Here's hoping tomorrow is a better day for you and your hubby.

Love Deb xxxxx

moving us up

Hi all, sadly I'm a new member on here, was diagnosed with a Grade 2 astrocytoma in my right parietal lobe, this during April this year when I had my  biopsy also. The consultant at Barts has suggested that surgery wouldn't be a good option, he can only remove part of the tumour and the risk is that I could lose movement down my left hand side should he proceed with surgery. He thinks the benefit would be minimal at best.

Having just had my second appointment with the consultant and researched the condition everywhere on the internet I realise that the outlook 'statistically' isn't great "5-7 years, could be 3, could be 10". This is not what I wanted to hear - I have been holding on to the hope that cure would be possible but I now know this is not the case. The plan is to 'just monitor with scans' for the time being - first scan will be in October.

I'm a 31 year old man, fit and active and have never had any health issues at all, this has come as such a shock to me but I think I'm coping well, I have my moments of feeling a bit down but soon pick myself up and I'm determined not to let this spoil what days I have left.

My family and friends have been fantastic, I don't think they fully understand the gravity of the situation, during my second appointment my mother came with me and asked the consultant "what kind of success rate is there with radiotherapy on this kind of tumour?" - his answer "radiotherapy wouldn't increase life expectancy" ..... it broke my heart wondering what must've been going through her head when those words came, in many ways I feel that I have to be the strong one and actually wished that she didn't know. I already knew what was coming through my own research and have managed to deal with it over the last few weeks once realisation set in.

I am truly gutted, me and my girlfriend we're planning to get married and start a family within the next couple of years and this has really thrown a spanner in the works (in my head anyway) it just feels quite unfair and I refuse to believe that there's nothing else that can be done, other than 'extending' my life expectancy as we go along.

Being an NHS patient and not having 'critical illness cover/private medical insurance' I'm desperate to know IF I can seek a second opinion and WHERE I would go to find information on this, it's not that I don't trust the consultant, I just want to give myself the best chance of beating this and living a normal life, I wouldn't forgive myself if I didn't at least give it a try.

Any advice, information, people with similar situations please do reply ..... Hope to hear from you soon.