We Talk Brain Tumours

Ah, dear sweet Pam.  I feel your pain and know what you're talking about and feeling.  There was a point during Ali's illness that I felt that I'd "lost" the essence of her, although she kept a shadow of herself for longer, it was painfully faint.

Dealing with this is part of the grieving process for us.

Thank you for all the advise and support on here everyone, i can honestly say it is really helping me cope with everything at the moment.

I also share your stories with mum, shes not so good with the internet, but finds comfort here too!!! Bless her.

Thanks again, sending hugs and strength.xx

Hi Laura, Let your Mum know we are all thinkig about her and understand what is is going through.

Many have mentioned dark humour and I thought what the hell is there to laugh about, now i understand. Yesterday after Mass we let our Grandaughter put the christmas tree up. The same old favourites come out every year and memories of  past christmas' come flooding back. The old  trumpet playing Rudolf  was sat under the tree withhis friends but alas his 4 batteries had run down, now the usual would be to go and buy some more  which I presumed we would do until Harry came into the kitchen very proud of himself to tell me he'd found one battery and cut the wires from the other three and attached all 4 wires to one battery. I was in absolute hysterics having visions of poor Rudolf with smoke comming out of his trumpet. Now we just have to keep Harry away from Baby Annabel.   

Pam - if you have enough time (not likely, caring for a BT patient I know) scroll back through the pages and you will see that we all understand what you are going through. The OCD was one of the hardest things I struggled to cope with during dad's illness. It is so hard to remember that it is the tumour making him behave like this, it isn't within his control.

When our loved ones receive a diagnosis of GBMIV, we start grieving from that moment on. Bit by bit, the essence of what makes them "them" starts to fade away. But don't give up hope as every now and then you will get glimpses of the old Tony. The day before my dad lapsed in to unconcsiousness, he asked me to hug him and told me everything would be okay. This is a man that hadn't spoken a comprehensible word for six months.

Come on here and offload whenever you feel it necessary. There is a wealth of advice and support on here and I couldn't have got through it without it.

My dad also pushed us (and his grandhcildren) away. His hopsice nurse later told us it is the way they prepare us for life without them.

Keep going.

Naomi.xx

PS: my dad was the most mild mannered man but swore like at trouper throughout his illness! We can laugh about it now!!!

Hi All,

I haven't posted on here for a while but have been following the group for sometime.

My Husband was diagnosed in April 2011 with an grade 3 Anaplastic asyrocytoma. Sucesfully had most of the tumor removed and underwent 6 weeks of radio thearpy which was finished in July 2011.

He recovered quickly from surgery and had very little side effects with the radio therapy, other than a little fatige and hair loss...

Now 5 months after his radio therapy he seems to be displaying concering symptoms, eg headaches, sickness, memory loss, insomnia and  mood swings.  He had a PET scan done last week and was advised that there is no signs that the cancer had progressed, but they didn't know what was causing the symptoms.

We are seeing his consultant tomorrow to have a chat, but i'm really at a loss on what to do now or how to help him.  Day to day he is fine and can function normally to look at you wouldn't know there was anything wrong. But these symptoms are really concerning me.

I have done a bit or reading and i think he may be depressed ? As this would account for most of it.

He's also really keen to seek alternative treatment and wants to try that doctor burzynski in Texas, so were looking into that too...

Has anyone else had anything like this after treatment? And any suggestions on what we can do ?

Appreciate any help or advise you can give.

Thanks

Geeta

Hi there Geeta,

It's difficult to know what the cause of these symptoms are, but since the scan doesn't show tumour growth, then that's a good thing.

As for Burzynski, I'd advise to stay well away.  If you've been reading up, then you need to stay away from his own site and take a look at

http://en.wikipedia.org/wiki/Stanislaw_Burzynski

Which highlights the legal issues he's been faced with, and the fact that none of his work is approved by the FDA and that there's no good evidence to support his claims.

To be honest, you're not likely to get better care abroad than you will with the NHS.

Sorry not to bring you more optimistic advice.

Kind regards and best wishes.

Week 4 in to justines treatment and its changed, we knew the radiotherapy was going to change as shes now having intensive tumour radiotherpy as supposed to brain radiotherapy but the have also now changed her chemo program as well and im very comfused!

Instead of having 12 weeks chemo she now stops her chemo the same time as the radiotherapy (23 Dec) for 5 weeks and then starts it again in Feb for a week then stops for 3 weeks then starts it for a week again, on off until JULY, and this is a chemotherapy program for someone who wasnt going to be offered chemo and the nurse said she wouldnt actually grade her tumour as a grade 3 (so therefore not cancerous) and now she seems to be IMO having very extreme chemotherapy!

I was always under the impression that it was the tumour that was terminal not that the 'cancer' was going to be the problem, now it seems that its actually both and she's fighting double, maybe its been me misunderstanding the situation but this certainly aint what I thought.

Dr always said he'd carry out a MRI 6 months after treatment (even though her Dr from Queens said 3 mths) but now if shes not finishing her treatment until July does that mean we will have to wait even longer (and prob looking at a years time) or will it be after the Radiotherapy has finished and not the Chemo, i guess the chemo wont influence the result of an MRI in the way Radiotherapy will? So much to try and understand!!!

I feel a bit bad about this post giving what a horrible time other people are having but I have to tell somebody. I have a anaplastic astrocytoma Grade 3. I put a few pics of me a little while back so that we could all have a bit of a chuckle. Anyway - for a change it is very positive news! Oncologist reckons the tumour has shrunk. YES! On the down side he's got me taking another round of chemo "to knock it on the head". The neurologist reckons that is good news as they would not necessarily bother. The neurologist (who has been with me since the very beginning so knows me better than most) says he has seen a big improvement - I am arguing more and questioning everything - just like I used to do. :) (have to keep them on their toes).

Geeta - I don't suppose it is much help but I can give you a bit of a take on where your husband is coming from. It would not be surprised if he is down even if not technically clinically depressed. If he is like me he will be very reluctant to say so. Have you talked about it to him? Try to get this included in the conversation with the consultant. Just seeing the consultant is a good sign.

I know where he is coming from about the memory loss, some insomnia and mood swings. Try to stick with him because we really don't mean it. I have always had MRI scan rather than PET so don't know if that might give a difference slant on the situation. One for the doctor to think about.

I'd agree with what other people say on here about Burzynski. Be wary. Besides there are many more avenues before things get that far. You have not mentioned chemotherapy - if it is even needed - is this something the doctors have already discussed with you?

llowe, - I am surprised that the nurse would be making a clinical assessment. I would have thought this is something for the doctors to look at not the nurse (no disrespect to nurses but they have different jobs to fulfil).What do you understand by "intensive tumour radiotherpy as supposed to brain radiotherapy"? They would seem very similar to me - as do the "tumour" and the "cancer". Forgive me but it is probably just me not understanding the terminology.

As for the MRI and your other queries, it might be better if you could have a good sit down and get the Dr to explain in terms that make sense to you. I think that the Drs tend to wizz through things really quickly if they can - they are very busy people - but it did take me a while before they realised that I would not go away until things were understood.

Cheers to everybody. I have to stop now because I need a rest (Chemo is my excuse).