We Talk Brain Tumours

Hi,

I just wanted to share a little happy news, I have now completed my walk and have raised in total £855 for Macmillan, I'm so pleased with my friends for helping and proud of myself to be honest. I hope it makes a difference somewhere and to someone. The Macmillan site has been such a blessing.

thinking of you all as always,

h xox

My best friend in the whole world was diagnosed with a malignant brain tumour and I am heart broken. Crying away when she’s telling me to “Wise up.” She is being so strong its unbelievable and I wish I could do the same. I don’t know what to do? She is waiting six weeks now for radiotherapy (not including the weeks gone by, so now its about 3 and a half weeks left until she starts), since she needs to recover from the surgery that she had. Which she was smiling after in no time. She is being so brave and much stronger than all of us, and she is the one going through it.

What I really want to know about all this, is how do I support her? How do I help her without treating her different, since that is the only thing she has asked for. I am just so confused. Help me? I know they are lots of posts on here about tumours, they give a lot of info, but I need to know how to support her, and how to be there for her.

During treatment what can I expect? What can I do for her? I am just a concerned friend, its only human?

Note: I posted this seperatly and I have only changed a bit of it as I copied and pasted it onto here, so sorry if some of it doesn't make sence.

Thanks :) Ava.

Just a word of warning not to ignore possible urine infections.
Last Thursday Doreen developed a high temperature, severe headaches, confusion and an awful aggression the type I hadn’t witnessed before. As she had stopped eating and hardly taking in any fluids we thought we had arrived!
Her urine had that eggy, sulphur smell, was thick and yellow with particles of blood and other gunge therein. I suggested a test for urinary infection, but was told that if they tested everyone with a catheter the laboratories would be inundated.
We have since almost forced vast amounts of pineapple, prune and cranberry juice down her, soluble paracetamol and oramorth plus decaffeinated coffee.
The result is this morning her urine is very light and has no unusual odour, her headache has gone and she has just eaten several spoonfuls of porridge with honey and yoghurt, she is willingly taking fluids. Her facial expression is now “of comfort” and I keep getting the occasional wink.
I am not silly enough to think things are ok, but what I should have done earlier is ask for a course of antibiotics despite not getting the urine tested, apparently the antibiotics can do no harm and could do a great deal of good.  An advanced tumour is bad enough to contend with without the added complication of UTI and I didn’t really realise what serious side affects they can cause.

Best wishes to all, Martyn XXXX

Hi Ava,

I'm sorry you have the need to post on the thread, but you are in the right place for help, advice and support.   You don't say if you are your friends main carer, but you appear to the very caring and supportive type of friend she is going to need. The radiotherapy can be very tiring even for months afterwards and she should be encouraged to rest whenever her body tells her to and advise her to drink as much water as possible, the brain is approximately 75% water and needs constant refuelling especially during and after invasive treatment. Be there for her without suffocating her if you know what I mean? and encourage her to do whatever she wants to do. Don't treat her any differently to normal, she is still the same person. If she wants to know the answers ask her to write down her questions prior to meeting the medics and respectfully insist on understandable answers.

Have a look at some of the other user's profiles to give you an idea of the varying situations here and then fire away with anything you wish to ask.  Stay with us, we do what is says on the tin!  We Talk Brain Tumours.

Best wishes, Martyn

As seems to b the way with GBM4 my mum's run of luck seems to have slowed somewhat.

To quickly sum as I know I haven't asked for info since Jan and I guess background info is relevant if I want your help:

 Mum was diagnosed in May 09, had radio for 6 weeks quite soon after, and then Temodal, chemo for 1 week a month for 6 months. In late Oct she had a seizure and is now on phenytoin or keppra, I forget which - I know she had a skin reaction to one so was swapped to the other. Her November scan seemed ok, and March scan even better. In her 2-3 months off chemo meds she's had a brief period with difficulty with her words - this was sorted with her going back on steroids. Just to be certain though they did an MRI scan, which she has just had the results of, it seems to show some growth, not lots, not enough to warrant another debulk (thank god, I mean I'll be glad if she has that option at some point, but I'm glad she is not there yet, as I understand recovering the second op is harder.) but she is going back on Chemo, tablets and IV (injection not drip I think), for 10 days every six weeks.

 So, my question is what can you tell me about PCV, I know some people on here have knowledge of it, at present all I really know is that it is given as an injection and tablets and is made up of 3 drugs. I'm going to read up on it now, but sometimes your more human opinions are more helpful.

Thanks in advance

Hope everyone is as well as can be expected! Much love xox

Dear IdreamofFiji

My daughter is currently on PCV. Vincristine is the intraveneous..she has her bloods taken in the morning prior to having the chemo. The gave her the Lamustine (4 Blue tablets) to take on the same night. However, this had a terrible effect on her the first time she took it...the procarbasine is white tablets taken over 10 days.

Last time she had it all they told us to take the lamoustine the following day...and it was a lot better.

PCV is also used in the treatrment of Luekeamia so is quite harsh on the blood. My daughter's platlets dropped to 79 the first round...and this time round her neutrophils where just 1. Depends on who you have as to wether they proceed with treatment, as some think 1 is too low... However she went ahead and has been ok so far..touch wood. They are scanning next week...so twelve weeks into treatment to see what effect it's having.

Hope your mum copes ok with it.

Love

PEABS XXXX

Our Daughter had PCV without the V as consultant didnt think that would work and as time went on it really did knock her Bone marrow- platelets of 12 neuts 0. 1 and requiring several transfusions, her treatment stopped end Oct 2009 and she has had clear scans since- so for her we felt it was helpful although she did have the gliadle wafers inserted as well. The blue ones as PEABS said caused vomiting she took the procarbazine for 3 weeks then a week off.Take care all Dianne J x

Martyn

So pleased to see that Doreen is comfortable(ish) again.

Best wishes all - Robin

Hi Martyn

You may want to ask the Dr to prescibe Doreen with an antibiotic to ward off any further UTI. Pete has had a long series of urine infections due to catheter problems. At first he had antibiotics prescribed each time he got an infection but it always seemed soon after he had finished the course another infection developed so now he is on a continuous low dose of Amoxicillen which seems to be doing the trick.. As you say UTIs can have some very nasty side effects . Glad Doreen is a little better as far as this problem is concerned. xx

Hi Ava

Sorry you have had to seek us out but I see you have already had some good advice from Martyn. I'm sure he won't mind me pointing out that he is one of the 'oldies' on this site, always offering help and support whenever he can. We call him the Train Driver but there are many, many others also travelling on this train who will help you if they can so you have come to the right place. All I can add is that  initiallly the news that someone you care very much about has a brain tumour knocks you for six and it is very hard to know what to do to help. It is certainly not going to be easy and everybody's journey is different although there are many common problems shared. As a good friend I'm sure you will know instinctively what is the right kind of support needed at the time whether it is of the practical or emotional kind.  That said this site is a godsend and provides a huge amount of information and support when you as a 'carer' are unsure about something or if you are struggling or want to get something off your chest as people know EXACTLY what it is like to be on the BT rollercoaster ride.. Keep posting if you can. xx

 I know I will be awake tonight as Pete started being sick this afternoon & the anti sickness drugs they have now added to his syringe driver have not yet kicked in fully. They tried to get him /me an overnight sitter from the hospice at home service but unfortunately no one was available at short notice. The carers couldn't provide a sitter either so it's up to me to keep an ey on the sickness situation.The DNs are suggesting it may be time for Pete to be admitted to the Hospice so I will be in touch with our specialist nurse later.   He is more relaxed now but nevertheless I cannot sleep .........too much going on inside my head. Why is it we know it will come to this, yet still when the time arrives it somehow comes as a shock. I hope I will have got my head round it again when it comes to later this morning and when I talk to our girls. I will always & forever hate BTs and what they do to the individual and their families. It is such a cruel illness.  

Thinking about you all too. Take care   

Sue xxxx   

Hi Everyone

Ava, just keep doing what best friends do best - just be there no matter what.  Don't try and fix anything, just listen and go with what happens that day/week and no matter what don't turn your back for any time at all if you can help it.  Isolation in these circumstances is common - maybe google information so forewarned is forearmed and to ask on this site will be helpful for you - but as I say simply being there to hold your friend's hand along the way, laugh and cry and everything inbetween.  You will find a way, we all do - the journey isn't all doom and gloom - painful and sad yes but somehow we all have moments we treasure so make sure you make plenty of those.  The adivse by others is sound too xx

Martyn, good to read that Doreen has rallied again - P's problems began unravelling with a UTI so you are right to be aware. x

Suetoy, you're right, we're never ready for that bombshell.  No matter how long our loved ones are poorly for it still pulls the rug from beneath your feet - I'm sorry you are having to think about this - even though we know that eventually that time will come it felt to me that it wouldn't be us - thinking of you Sue and hope Pete continues to be comfortable and relaxed.

Take care everyone xxx