We Talk Brain Tumours

Hi Martin,

Sorry you needed to join this group but welcome. You will find a lot of support and info here.

Apparently a second opinion is not a legal right on the NHS but your GP is very unlikely to refuse it. You need to go to your GP and tell them you want a second opinion. They will then refer you to a different specialist. It might help if you tell your GP if you have a particular specialist in mind. The specialist will then be sent all the info and your scans etc. They will also be told your consultation is for a second opinion.

It does not mean the other specialist will take you on as a patient for the rest of your treatment, but you can always cross that bridge after you have had the second opinion.

Bit of a long story to say: ask your GP.

If I may be so bold as to give you advise on your future: do what you were planning to do. Get married, have those kids. Things will change over time. You might live much longer. There are always people who are fortunate and, although not officially cured, somehow manage to keep the tumour at bay for much longer than expected. You can't deny yourself your dreams, based on what might happen. When my wife was diagnosed, she had her surgery and after that, we just forgot about the tumour for nearly 3 years as it remained dormant. They were 3 very happy years. I know there are people for whom that period last for more than 10 years. 

Maybe other people will feel it is selfish of me to say: have those kids but I believe kids are very strong and although they will be sad if you were to die, they would surely have fond memories of a wonderful father that will help them through life.

Hi Martin,

So sorry to hear your story, shock doesn't describe the situation we all find ourselves in when we receive a brain tumour diagnosis but the best advice I can give you is to always try and remain positive.  The mind is a very powerful thing.

I am the wife of a wonderful man diagnosed with a GBM brain tumour in June 2009 who like yourself was a fit and active young man (to give you an idea he was 44 going on 24).  In our case, it is me who has taken control of the situation (due to me having some medical knowledge from previous work within the health service and him having none!).

Please be assured the hospital responsible for your care will offer you the best treatments to treat your grade of tumour and more importantly proven treatments.....Iike yourself, I doubted them at the start and in the early days contacted various places overseas and then went to appointments with hubby armed with pages and pages of info only for our Consultants (oncologist and neurosurgeon) to read and say....

'Our advice is don't waste your money, the treatments on offer can be costly and are not proven to work,  what we can offer has been proven to work and many patients show a good response.  You wouldn't receive any better treatment if you were to pay privately.  By all means go if you wish, but our advice is stick with what is known to work not what isn't".....but

I have always asked them to let me know if THEY hear of anything new that isn't available here but is available elsewhere so that we have the opportunity to go if we wish.....and I know they will. 

Please don't torture yourself with median survival - we are all individuals not statistics...they gave my hubby 12 weeks and he's still alive and kicking 2 years later!

Push on with your plans too.  I understand we all deal with things differently, but in our case we refuse to let this 'thing' dictate how we should live and what we should do and I think this is one of the reasons we're survivors.  Apart from his tumour, my hubby has had so much adversity running along side......including a broken back caused by a fall during a 3 hour status epilepiticus seizure.  As I write this, he's in hospital after suffering a 1 hour status seizure in the middle of the night (yesterday) and is currently intubated in critical care......but we'll get through it (again!), cos he's strong, determined and because we have a love that is our whole being and because I know his tumour is not the cause as another scan performed yesterday was 'very good indeed' confirming the huge shrinkage confirmed in May.

Martin, again I am sorry you find yourself here and you will always wonder 'why'....but you will learn to cope and you have your family and friends who will support and help in any way they can. 

You also have a future.

Stay positive and take care

Debs x

Hi Martin,

So sorry you have the need to post on this thread, but you will, I promise, find the help, support and advice to help you along the BT journey. Read a few profiles and see the experiences of others. How Oncologists can differ!  My wife has a grade 3 astrocytoma in her left temporal and the prognosis was "around 2 years" She had a debaulk, followed by 30 sessions of radiotherapy. She has not had any chemotherapy. Her diagnosis was in January 2003 and she is still with me! I really don't understand why R/T may not increase life expectancy, but of course he is the expert in your particular case. and there are side affects with the R/T. My wife is not well at the moment, but she has defied the rules! The best of luck my friend and think positive.  Martyn. (the posh way)

Hello to all passengers. Sorry I haven't read back, but it's been a little difficult here lately.  My mind has gone blank, but Monday July 4th is an important day to someone on here for results? Whoever that is, I hope that you get the news you want.  Love to all. Martyn. XXXX

Hi all

havent been posting but have read through all the posts and sad to see so many new people on our train.  As Martyn says you will get your support.

Martin, Dutch has suggested asking your GP for a second opinion and that will work or you can simply speak to your oncologist, they would usually be more than happy to arrange a second opinion.  I don't know how far the Royal Marsden is from you but they have an excellent specialist Neuro oncology unit (please dont read that I am saying anything against Bart's I am not).  NHS care for oncology is as good as you can get, I wouldn't think of going privately.

My husband was diagnosed with GBM IV in January 2010, we were given 3-6 months and if lucky with treatment 12 months.  Today is a bitter sweet celebration - 18 months since diagnosis, and to celebrate we get to watch the boxing tonight, lucky me!  It is a long dark road but you will have many high lights and like the others I would suggest you get on with your life as you planned and enjoy every day as it comes

Wishing all passengers a peaceful evening

joanna xxx

Ah, we have more passengers; the thought if it fills me with sorrow.

Sorry I've not been around recently to share and to support you other guys.  I've been having a rather mixed time of things lately.

Last week, Ali's abdominal shunt wound has been discharging to an extent that the district nurse fitted a drain bag (which seem to be very few and far between and they've not been able to find another one since).  Initially, the GP said that the fluid was just leaking tissue fluid, but since the bag was fitted, I've been draining about 75ml a day.  My own thoughts, and shared with the oncology team is that this is CSF being expressed from the shunt.

So, the GP was dead wrong in his assessment.

A few days ago, this discharge point spontaneously stopped discharging and the area behind started getting distended.  Ali has had increasing headaches, so I feel there's a backlog of CSF causing increased pressure.  I had the district nurse come out who removed the drain bag, cleaned things up and put a standard dressing on.  He also arranged for the GP to come out to assess.

The GP decided that the best course of action would be antibiotics.  He also called the oncology team for (I assume) some advice and got a phone call to get Ali back into the oncology clinic on Monday.  We don't know what the outcome will be, but assume that they might fit a permanent drain.

In the meantime, I've not bothered with the antibiotics and I've temporarily increased the Dex dosage to limit any swelling.  So far, it seems to have worked a little.

Weirdly, Ali's personality is starting to resurface, she's coming out with some insightful sarcasm.  She's also regained a small amount of voluntary movement in her right foot and right hand, although it's not consistent.

But, attrition is starting to wear me down with the repetition and tedium.

I catch myself in the mirror sometimes and all I see is sadness in my eyes.

Hi Martin,

Sorry you have to be here, but hopefully you will find the support you need.

I am only the daughter of someone with a grade 4 GBM, so I don't know exactly how you are feeling, but I would say:

a) an 'outlook' of 5-7 years could easily end up being 10 years, 15 years, 20 years, 30 years, more. Who knows? Especially with advances in research happening all the time. Do not put your life on hold, which so many of us do anyway at this age. You, more than most, have the opportunity to go for exactly what you want, as soon as you want. Get married, have children - you have your mark to make in the world! You could well beat this disease, and then you would regret not having done the things you wanted to do, because you were waiting for something bad to happen.

b) Doctors do not always know what they're talking about. Yes, they're well educated in various fields, but they are not psychic and they don't know what the future holds for any of their patients - it's all educated guesswork. Please see what my profile says re my dad's latest experience with a doctor who gave us all a horrible scare for three weeks then turned out to be wrong. So, yes, go for a second opinion if you don't quite trust what your doctor is telling you, but have self-belief as well. That will go a long way to helping you live a normal life. 

You will have lots of good days, and maybe lots of crap days, but even survivors have crap days! Stay positive. Stay strong. And don't listen to anyone who tells you you can't beat this thing. They are no good to anyone.

Very best wishes,
Debbie xx 

Welcome Martin, and as the others have said, I'm so sorry you've had to join us....

My husband (MrSG) has an anaplastic astrocytoma grade 3, originally last November we though he'd had a stroke, but some weeks later were given the devastating news and a 1-2 year prognosis. He was de-bulked in Jan, but to be honest he's never really been the same since (deteriation in congnition and mobility).  With the benefit of hindsight, we would perhaps have declined the surgery option in favour of quality of life (so being inoperable is not necessarily the worst scenario in all cases).

The advice from everybody is not to listen to statistics, a strong positive mind and the support of a good wife / husband counts for so much.

Unfortunately MrSG is not too well at the moment, He's been suffering from a bladder infection over the last few days which is not being helped by being catheterised (he recently had to move into a care facility).

I hope what I say next won't cause offence.......I am the mum to 2 small children aged 2 and 6, it is breaking my heart knowing that they will soon be losing their beloved daddy....if I could turn back the clock and knew this would be happening I would still marry MrSG in a flash as we've had 10 wonderful years together, but ask me if I'd have had children?? - and I honestly don't know what my answer would be.  It was my daughters sport day on Friday, her face said it all when it was the 'daddy's race' - please consider things like this when considering your future.  I know I will get through this somehow, but I don't know how my children with fair and I'm so worried about them.  Children are such a gift and will leave such a great legacy if you choose to have them, but it will be very tough for them to grow up without their daddy.

Wishing you well and sending hugs, keep posting

((((((hug)))))

The hindsight monster.  It has the uncanny ability to completely mess your mind up.

Yes, I agree, MrsSG.  I've only known my wife for 6 years now, and married for 3.  But if I'd known what would happen, I would only have married her sooner.

Children have an unbelievable ability to cope with the most severe of circumstances.  The main thing that helps them cope is being able to understand the situation, or to rationalise it into something they can understand.  It might well be an idea to talk to your Mac nurse about coping strategies.

I've caught myself watching "Good Will Hunting" (when I should really be sleeping).  Robin Williams' character lost his wife to cancer.  I don't know who wrote those lines, but they contain so much love and insight, it's just incredible.

Ali started snoring loudly last night.  I did what I could to make her stop, but in the end I got so tired that I caugfht myself starting to lose my temper with her.  I ended up having to sleep in the other room.  The first time ever we've slept under the same roof but in different rooms.

Hello Martin,

I am another carer on this train however my husband at the moment is having a relatively easier journey than a lot of the fellow passagers on here. He was diagnoised May 2010, We were told that he had a prognosis of about 6 weeks without surgery, with surgery, chemo and radiotheraphy - about 2 years. We were also told - because of where the tumour is- that he could lose the ability to talk. We decided to go for it and we are one of the fortunate families that have had a more positive journey. 14 months later, hubby is still tumour free, though he is experiencing in recent weeks a weakness in his right arm and leg which happens when he feels tired- this was a post op sympton rather than pre op. He is also battling to control his diabetes which can also bring on fatigue and irritability as well as the side affects of the tumour. However, he is independant in the house and manages with a stick for walking outside- simply because he tires easily.

We have two adult children  who both work and still live at home. I must admit, I can understand where Mrs SG is coming from where she does worry about the future of the children BUT, Like Dutch said, I still believe that if it is something you want to do and your girlfriend still want to get married and have children, you should still go ahead and do it. Lets face it, NONE of us knows what the future holds for any of us. People die suddenly of heart attacks and lots of people are young. Its like with us, we still talk long term in the future- we are planning to do things to the house, go on holidays in the UK stuff like that. My husbands ultimate goal is to go back to Australia for a holiday.Okay, its not like having a child you say but do you know something, if my husband was your age and we had no children, I would still want to have his child. If possible, I would still try to have his child. I would cope somehow. Just because the tumour is there, don't let it interfer with your plans and dreams. Hopes and dreams are part of the fight against the tumour, it helps you get through the difficult days, and inspiration for the good days.

Regarding a second opinion, it won't hurt to get a second opinion. Like Mrs SG said though sometimes an operation can actually lessons the quality of life. But if you can find a neurologist that will try and remove some of the tumour then you then have to decide what is best for you, and if you get a second opinon that it is best for you to leave it alone then you know that that is the best thing to do.

Everyones journey is different. Take the stats with a massive dose of salts. We just concentrate on our own pathway and just enjoy one day at a time.

Debbles- just wanted to say- you say you are JUST a daughter- it doesn't matter whether you are a wife, husband, daughter, son, sister, brother, cousin, friend etc etc etc we are all struggling to come to terms with this horrible monster with our loved ones.

Martyn- you say things have been tricky recently. Just to say thinking of you there.

Pete- You mentioned about Ali's snoring. Many a morning I have woken up to either find my ribs aching or other half asleep on the sofa! I am really bad at it!

I had  a firey moment yesterday- I couldn't do anything right for my other half. He critised everything I tried to do. As for driving....I got to the point where we were on the way to his mothers and he had nagged me so much I very nearly parked up and left him and the car there, 10 miles from home, and would have walked home!  His blood sugars were sky high. Today we are back to normal in blood sugars and in our relationship!!

Thinking of you all on this journey.

Julie

Morning everyone, just read all the recent posts laughed cried and thank you all for being here what a great support your all are......Debbie I am live in the south east but I am a northerner by birth lol.  Some great advice on here.   To update you on Alan after the Dr s question about work Alan has been on the tractor all day since with our beloved son showing him the ropes he is like a kid with a christmas present come early.  Keep giving him the cloblozam to keep him calm though.  He should not be anywhere near the farm or tractor but do you know what whilst he can do what he has loved all his life then he will do it.  It breaks my heart on the other hand as I know he is handing the reigns over to our Son.  We had a fantastic night on Friday Alan s mate who has a small band played at our local and Alan came out to listen to it.  Very emotional as Chris had learnt and sang a coldplay song specially for Alan and dedicated it to him which resulted Chris and practically the whole bar in tears but it was a lovely moment.    Going to have a bar b q today.  Trying to cram as much in as we can before the op on Friday.  Wishing all hugs on the train POSITIVE  Julie xxxxx p.s. debs reflect sending u pm honey xx