We Talk Brain Tumours

Welcome Jules - glad you found us over here.

As already suggested, perhaps you should organise a meeting with just yourself.  Once my husband had had his operation I never took him to meetings with me, or if I did he sat outside as I felt I would get more honest answers.  I think the consultants have to make decisions about how much people can take on board at any one time and in the first few weeks there is so much information to take in I believe they hold back, understandably really. 

If you write your questions down and request a meeting they will get the idea that you are one of the people who needs this info.  Of course there is the issue that they may feel they can't answer your questions unless your parents agree - if so do you think your father would agree for you to have this meeting?  If so simply tell the consultant to speak openly and candidly - but then the problem is that they are never totally sure - they, as already suggested, use their experience but, as I was told by a couple of consultants, giving a prognosis with a brain tumour is the most difficult.  Other illnesses tend to follow a pattern and if things do change they are already prepared for them, however with brain tumours this is not the case at all as everyone is very individual and things can begin to go 'wrong' very quickly.

Keep strong, being there for your parents will be such a huge amount of support I'm sure.

Take care

Hi Helen

Thankyou for the birthday wishes.  Steve could walk un-aided until October 2009 and he had a series of fitting one evening (6 in all) very frightening, not nice to see.  Fortunately, no fitting or twitches since January.

He was trying to reduce the steroids a bit at the time because he had really bad water retention in his arm and legs (not sure if this is what caused it) and since then, he cannot walk un-aided.

It was a nightmare at the time as he had gained 2 stone which made it difficult and he couldn't get into bed which didn't help the water retention and he was sleeping in the chair for weeks

But it's got easier with time (water retention almost gone) now sleeps well in bed and walking is getting better.

I say it's all down to the care! Have to praise yourself sometimes!

It seems when you have a set back it takes time to get back to where you were.

My husband is determined and won't give in to it so we are now working towards getting him back walking on his own.

I notice from your replies to everyone that you are now getting alot more comfort from posting on here - it's nice when you actually become part of the community.  It's a bit confusing at first but you soon get to know one another.

We all like to talk, share our thoughts, have a good old rant - nobody minds because they know exactly how you feel.

I am sure once your dad gets into the routine he will understand it a bit better.

The one thing that gets us through all of this is that through the tears, you have to believe that you will get better.

Enjoy your aerobics and I am sure you will enjoy Mexico - are you going to swim with the dolphins?

By the way, Steve's youngest daughter is called Helen.

With regards to lower tariff, I know that you can get reduced water bills - have a look on the websites for the suppliers or phone them up.  Also, your Dad maybe entitled to claim travel costs to the hospital - need receipts.  Let me know if you want more info about travel costs and you can also get free parking whilst on long term treatment at City - you have to obtain a parking ticket and give it to the receptionist and she will write you out a long term ticket for your car.

Oh, and another thing - I am a mind of information - at City there is a hotel near the maternity wing and when on radiotherapy, the patient can stay free of charge.  A companion has to pay £25 per night.

This can be used for if you are unwell and can't travel home or if you have a late appointment then an early one and don't want to go home.  The staff in the main waiting area at radiotherapy will be able to give your Dad a leaflet/the info.

Take care

Your Mac Mate Ann x

Hi MandyR

Thank you for wishing us happy birthday, I gave Steve his cards and we had a cry and a kiss and a cuddle then enjoyed the rest of or day.

Terice - my husband's is a GBM grade IV (it means that it is an aggressive tumour and grade IV means multi cell so what you are up against is as the treatment kills one type of cell another type may then form).

Not sure if a GBM can be a Grade III (grade three means one cell) I know that much, so sometimes easier to treat.

I know that your sister has two to fight but from experience, I feel that she may have caught them early as my husband's was 2.5cm when diagnosed.  Some people when in hospital had ones the size of golf balls/oranges etc.

By your sister saying she is going to fight it all the way is absolutely brilliant and with your help and support (even from afar) will help her immensely.

If you have a look at a site called www.btbuddies.org and click on stories of hope you can read about people who are survivors.  (Some are in USA but I think that the treatment regime is the same as here).

The one thing that shines through is that all of these people had a positive frame of mind.  One man says that he never questions why he got GBM IV he questions why did he survive it!

As Postmark (Martyn) has said all along, we are on this journey (a journey none of us chose to be on) never knowing how it will end.

Sadly, some of our friends on here are coming to the end of their journey but as Y&Y said, the journey doesn't end it takes a different course, hopefully to a better place., but the community is here giving their love and support along the way.

A lot of us are still fighting, hoping that our loved one will be the one that survives, never wanting to reach the end of our journey and the love given by others although their journey may have ended astounds me as they all try to spur you on..

So keep asking away and we will all try to help.

Take care

 Ann x

Hi MandyR

Thank you for wishing us happy birthday, I gave Steve his cards and we had a cry and a kiss and a cuddle then enjoyed the rest of or day.

Terice - my husband's is a GBM grade IV (it means that it is an aggressive tumour and grade IV means multi cell so what you are up against is as the treatment kills one type of cell another type may then form).

Not sure if a GBM can be a Grade III (grade three means one cell) I know that much, so sometimes easier to treat.

I know that your sister has two to fight but from experience, I feel that she may have caught them early as my husband's was 2.5cm when diagnosed.  Some people when in hospital had ones the size of golf balls/oranges etc.

By your sister saying she is going to fight it all the way is absolutely brilliant and with your help and support (even from afar) will help her immensely.

If you have a look at a site called www.btbuddies.org and click on stories of hope you can read about people who are survivors.  (Some are in USA but I think that the treatment regime is the same as here).

The one thing that shines through is that all of these people had a positive frame of mind.  One man says that he never questions why he got GBM IV he questions why did he survive it!

As Postmark (Martyn) has said all along, we are on this journey (a journey none of us chose to be on) never knowing how it will end.

Sadly, some of our friends on here are coming to the end of their journey but as Y&Y said, the journey doesn't end it takes a different course, hopefully to a better place., but the community is here giving their love and support along the way.

A lot of us are still fighting, hoping that our loved one will be the one that survives, never wanting to reach the end of our journey and the love given by others although their journey may have ended astounds me as they all try to spur you on..

So keep asking away and we will all try to help.

Take care

 Ann x

Hi Everyone

I thought that I would share this information with you as we saw our Consultant Neurosurgeon today as my husband wanted to have a look at his scans and ask a few questions about why speech, mobility, emotions etc are all affected.

My husband's tumour is also called cystic which means it has fluid surrounding it which again can cause pressure.

We have always felt that it is sometimes the medication that causes some of the day to day problems, but our CN shed a different light on the following:

Speech

Following a fall 8 weeks ago, my husband totally lost his speech but over time, it has gradually come back.

We were informed yesterday that a fall can affect speech because the force can cause concussion and speech should gradually get better over time.

Mobility

The steroids are used to reduce swelling around the tumour to prevent the tumour from causing pressure on the brain. 

However, they can also cause water retention and muscle weakness, therefore giving you mobility problems.

My husband cannot read very well because when he looks down his eyes close (he calls it dolls eyes).  The CN said that this is because the steroids cause the eyelids to swell (water retention) and because the steroids can also cause weakness in the surrounding muscle, then this is why the eyes will close.

Emotions

The front part of the brain (frontal lobe) is where your character is.  If the tumour or swelling causes pressure on this part of the brain that is why many emotions are experienced i.e. crying, anger etc.

Dizziness

My husband has also had dizziness just lately when standing up whereby he then has to sit back down 2-3 times before it goes away.   In the past, when we have spoken to the Oncologist about dizziness they sometimes say it maybe caused by the tumour but cannot be 100% sure.

On speaking to our GP she said that in my husband's case, it is due to low blood pressure as the medication is probably affecting it. The GP also said that when you have low blood pressure, on standing, the blood drops to your feet and that is why you have to sit down, if you don't sit down you will probably faint/fall down because this is the bodies way of getting the blood back up to the brain in the quickest way.

My husband is also slightly anaemic (caused by Chemo) and again, this condition can cause the same dizziness.

We have always felt that it is all about trying to get a happy balance with the medication and not to cause too many drastic changes in the body that are then difficult to manage i.e too high a dose of steroids may cause massive water retention in your legs which then makes mobility a problem.

I do hope that this helps everyone as the more knowledge you have all helps us to get through each day and it is not always the tumour that causes the problems.

Obviously I am not a medical expert but felt I needed to share this info with you. 

Take care

 Ann x

Ann - that is an incredibly helpful post. My mum has been suffering from severe dizziness caused by low blood pressure. In her case she was told that the TMZ last year (which she didn't tolerate at all and made her very ill - she managed most of the chemo alongside the RT, but then only managed one round afterwards) had killed her adrenal gland, So she now has to take tablets every day to control the low blood pressure. Or was it the steroids doing the job of the adrenal gland, and then when she came off the Dex the adrenal gland didn't kick in again?  I can't remember now. Sorry!

I have just done a really long post on Gliobastome WWW - if anyone who doesn't normally go on there could take  a look and see if you have any pearls of wisdom to add that would be really helpful. Thankyou.

No pearls Sally, but support and advise on the other thread!   

Ann, your GP sounds very supportive which is all good!  However, I think the problems always for all of us are that everyone's unique situations are so complicated and and so individual we can only offer the knowledge we have obtained from our own experiences - so obviously any information is excellent, especially  when someone relates to it but we do have to remember that the doctors often don't know all the answers - we had many of these type of experiences over the years as they tended to use my husband as a guinea-pig all too often (until I finally put a stop to it) and we were often confused as to what was causing problems, whether it was the meds or it was the tumour.  The meds often caused more problems such as seizures but we had to remember that though the meds were causing another set of problems they were helping the initial set of problems - but on speaking with the doctors they attempted to find ways around things.  

We didn't have the problems that sterioids create as it was a strict directive from our NS that they weren't to be prescribed soon after the debaulk - however, due to his adrenal gland not working he did take replacement steroid hormone (hydrocortisone)  and if he was ill, due to say a virus, we had to increase the dose accordingly  (this is because the adrenal gland produces cortisones (a steroid) naturally in these circumstances - it is a whole science in itself - a very complicated and much needed hormone which is involved in many processes within the body - we had to carry an injection with us at all times as P was at risk of his organs failing if he was in a stressful situation - like a car accident etc) but that was complicated by the fact that he couldn't communicate so we weren't sure if it was the tumour or it was a virus causing the illness but this causes all sorts of problems, so Sally bear this in mind if your mum is having problems - I wonder if she is under the endocrinology dept too?  My husband was.

Take care everyone x

BTs are so very complex, I found when my partner was ill that however hard I tried I could rarely uncover all the possible reasons as to why a particular thing was happening. Was it tumour, was it medicine, was it infection or something else totally?

One example, the use of steroids, being a real double edged sword. It's easy to get used to them being the first port of call especially early on during the illness; using them at the right time could take away symptoms in a trice. But steroids at the wrong time - in my personal experience, with a fast growing tumour, are not always the best option.

It's excellent how this thread provides a place where the variety of experiences can be discussed.

Best wishes to all reading,
CHxx

Oh Good to see you posting CH - long time and missed your posts - usually invaluable and informative - and often just with humour - though those are less so these days huh?  Take care my friend xx