“I am two years on from GBM diagnosis, so must be doing something right. While statistically I am fortunate to be alive, I mourn for the life I’ve lost. It messes with your head.”

“putting official complaint to GP then health ombudsman and them saying GP did no wrong- despite me having many BT signs and the Dr's ignoring them. it feels like i am on trial ”

“that despite a removed tumour- some days i still feel wobbly, uncoordinated & cannot speak properly saying the wrong words and not being able to think and speak quickly. ”

“not being told until after surgery that my neck muscles had been cut (and why it hurt there) then 3 weeks after finding out my numb head would stay that way as my nerve was cut ..”

“"Benign Tumours" We really have to get this word eradicated from point of diagnosis ...for no brain tumour is "benign"...the medical definition is "does NO harm" and they all do ..”

“Knowing the news that you're "stable" does not change or improve anything and can give "other's" the wrong impression ... DWP especially, always a fight to prove you're ill.”

“Not being given the results of the emergency scan.”

“Not being informed as a family that the brain cancer had rapidly progressed thus meaning the original survival prediction of 12-18 months had been reduced. ”

“No specialist has shown me compassion or taken into consideration the psychological/emotional impact of this diagnosis. No one ever asked me what I wanted or reassured me.”

“Having a lump in your throat as you await results and if they made it through surgery okay and feeling so helpless. 14 years together and we are so young, question is why....”

“felt like I was in a pack of cards ,at the beging ,if I fell apart everyone else would,although I had very good family & friends, I sometimes felt very lonely,”

“Putting your "I'm fine " face on , but inside shi**ing yourself xx”

“Recently diagnosed with a meningioma causing proptosis of my right eye. Very scary situation. I have very painful headaches, balance problems and nausea - get any problems checked!”

“1”

“not benign but not malignant (yet) either? pre malignant - what does this mean?”

“What can you say to children that dad has a grade 4 GBM? How do you explain? I look at them and see the life i'll miss.”

“Can I really take much more, what else will life throw at me.”

“Husband has had re-occurrence of an anaplastic oligodendroglioma twice has been leaving with this for over 12 years now has severe depression and anxiety God help us please!!”

“So 13 mths after G.K.tumour has grown 20% so i must be in the 10% it didnt work for.."its got to come out sooner rather than later" so w/w 5 mths !! its a nightmare..(”

“Watching your 28 year old son slowly being taken over by GBM tumors telling him every day that you love him just incase its last time, Life will never the same without him”

“Next angiobrain scan in 2 wks and smiling when i really want to hide and cry...and finding the words that used to come to me so easily are gone now. replaced with feeling numb.”

“all the time trying to stay strong for everyone around you so they can't see your pain or anxiety, when you really just want to curl into as ball and fry forever”

“It's frustrating how I know what I want to say, but it doesn't come out... today I was in a cafe and I was staring at what I wanted and said "I would like a..1..2..3...ginger beer"”

“Every month I am able to do less and less and, withdrawing more. Ran a marathon in 2006, now I can't walk without a crutch. I want me back!!!!”

“When the 30 something person who you care for becomes too violent and unpredictable to live with it is heart breaking having to put them in an "old folks" care home. ”

“Every week I am losing more and more quality of life. Even the simplest of things are becoming unmanageable now. Feel like I lost my life anyhow to this Meningioma”

“Loss of mobility, tiredness, cluster headaches, nausea, yet after Gamma Knife I was supposed to have no symptoms. How come everyone I know who has had it, is so unwell after it?”

“Had a large Grade II glioma removed in Nov 13. Made a great recovery but there will always be that dark cloud over my future. How long will I enjoy this good health? I'm only 26. ”

“Although I want to hear the results of my MRI. I also don't want to chase them up in case they are bad. Especially when I have felt so much worse after treatment. Mental torture!”

“Benign? slow-growing? may not grow any bigger? Everyone assumes you are better and stop asking how you feel about this Thing in your head. No local support. Fight for benefits.”

“Moderately benign neurosugeon said after my partial craniotomy, radiotherapy to put off the inevitable, he said, yearly MRI's. Sometimes its hard to smile when people say oh good.”

“Iam in my 10th year with no reoccurrence of my glioma I keep praying and hoping for another 10 years. Its so hard not knowing how long!!”

“why is there so little support for those of us with low grade tumors? The CNS always make me feel like I shouldn't be at the support group I go to, other patients are fine about it”

“You can't tell by looking at me,but after 2 craniotomies,Cyberknife radiation, this doesn't even feel like my head.It feels different inside and of course is scarred on theoutside.”

“I lost my dad to a brain tumour 7 years ago...aged 67. I think Brainstrust are amazing and it is at the point of hearing those 5 words that people need this support more than ever”

“Happy Christmas and thanks to all at Brainstrust. I may not be where I want to be but, I know I would be so lost without you!!!”

“To be told that you have a Brain tumour is bad enough, but what happens next? is the Question you will never know! no one understands the pain but you..”

“WHY!!??”

“I'm waiting to be called in to hear the results of my annual MRI scan. I look calm and relaxed on the outside. Inside, I'm terrified, sweaty palms, trembling. Will it be this time?”

“Every year our team organise a charity event.We chose to support the Brainstrust,as it’s a charity very close to our hearts.Steria and Medway Council raised £627 including gift aid”

“Blessed to have a supportive employer and colleagues who are all keen to do their bit on October the 1st. If only everyone was as understanding of how awful brain tumours are. ”

“Was told by 4 GP's I had post natal depression - I kept on for 2 years saying it was more to finally get an MRI after migraines kicked in - emergency surgery for a 7cm tumour. ”

“Stop telling me "you look well". Do you not think I notice that too but I am not well, it doesn't make it an easier for me. Makes me want to say, so do you! worrying isn't it!!”

“I'm incredibly lucky that my tumor is benign but I struggle every single day, it's hard when no one can relate and 100% understand how you feel.”

“Father-in-law's diagnosis was like a hand grenade being thrown into your family. No telling who collapses and who rises to the challenge of helping until it actually happens.”

“If I'm told one more time that we are lucky that my son has a benign brain tumour, I'll not be held responsible for my actions!”

“Taking 5 months every year to get my driving licence back, it's a constant reminder that everything is not ok”

“Stop saying to me, "How are you?". Half the time I don't even know. One day I feel strong the next I am on my knees crying again. I don't know how to handle it.”

“had results that fossa post meningianoma has grown so now the wait for g.k. and it will be in sheffield...its all so scary....”

“I know some people are there for me but I still feel so alone and scared. Knowing they have to treat something life threatening with toxic radiotherapy rays is no consolation!”

“I know some people are there for me but I still feel so alone and scared. Knowing they have to treat something life threatening with toxic radiotherapy rays is no consolation!”

“Diagnosed in January and waiting for date for GK. People don't know what to say to me anymore. Part of me wishes they would remove this horrible thing but it's not that easy”

“I've had a brain tumour (grade 4) since Jan 2011. I am enjoying life limited though it is. I started a blog based on my diary since Jan 11. Please see www.jimbo63.com”

“Waiting for MRI results only to be told that they haven't been looked at yet as the Radiologist has been on holiday and they forgot to check. ”

“I look at my wife and hate having to put her through this as well. She is supporting me every step. I can't do this without her.”

“I cant help but feel that its not fair to be marrying my fiancé this yr knowing that I'm halfway through the average survival rate.I desperately want a normal life like every1 else”

“People expecting me to return to normal after surgery because "it's fixed" or "it's was benign" - they don't see the physical & mental effort it now takes me to do simple things. ”

“Please don't ask me "so has the radiotherapy worked?"”

“Nothing prepares you for the road you take the day you hear the news. Watching your sibling slowly fade. Watching your parents fade with that - how do you come to terms, do you? ”

“Why do we have to chase up and check things are being done for our treatment instead of just being able to try cope with living this nightmare? ”

“I know it's going to hit me like a sledgehammer when I walk into the hospital for treatment soon. Even though told I have a brain tumour in January it just hasn't sunk in yet. ”

“Have GBM4 - excised September, then chemo & radiotherapy. It will prob be back. V. grateful to all at Southampton General for excellent treatment & care, & to friends & family x”

“Sometimes I cry Sometimes I can't Thats when I get angry and feel guilty about it”

“HAVING HAD 7 BRAIN OPS ON MY BENIGN TUMOR I HATE THOSE WORDS "YOU LOOK ALRIGHT NOTHING WRONGE WITH YOU ". ”

“Knowing that when treatment is over, its never really over. The damage done by chemo and radiotherapy never goes away. The fear never goes away. Life is changed forever. ”

“waiting for scan result...has fossa post mening grown enough for surgery. its a nightmare not knowing, then nightmare till next scan. its a lonely journey.”

“Terrified that my tumour is growing back but guilty that I feel this way - I should just be grateful to be alive.”

“Each day I put on my brave face, I bury my fears, try to continue as "normal". I am a wife,a mother,a daughter,a sister,an employee.I am surrounded by many, yet so alone...I'm lost”

“Benign tumour? What a cruel misnomer!”

“Feeling so helpless watching your young son battle for so many years. Still, it's benign so it's nothing to worry about! wrong. It's so hard explaining to everyone all the time.”

“Another MRI scan yesterday now the wait to find out if it's safe to operate. The waiting is hard for me but worse for my family. ”

“Having to face losing the person you thought was your future, when your peers are buying houses, getting married and starting families. Will these things happen for us? ”

“When everyone else moves on with their lives and can't see what's changed for you. When the person you love is not quite the same personality you fell in love with.”

“Helping others with a smile every day and being unable to help the one you love the most. Being a medical professional doesn't make it any easier. ”

“29 surgeon in training- Grade 3 anaplastic astrocytoma - R frontal lobe, resected- back to work. chemo a year later. Legal battle with DVLA.- we won! It's been life changing. ”

“when the new normal finally becomes bearable, knowing that your mental health is so fragile the slightest knock could send you back to dark places”

“Watching my son lose everything that was normal in his life. His job, his home, his independence, his child, his health and possibly his future. ”

“Every 6 months you wait to find out if this is the time doctors will say that your tumour has transformed. You have to learn to live a new 'normal'. Life will never be the same...”

“Every 6 months facing the same fear that this scan will show that my time has come.”

“When people ask me if I'm better now, how do I explain that I will never BE better, that staying the same is the best I can hope for. ”

“Knowing that my brain just doesn't work the same anymore since surgery but not having the means or tests to prove it to myself or the benefits system.”

“One day you wake up to find that you're on a journey you never wanted to be on. 11 yrs down the line, I'm still fighting & determined...friends & family kept me going. Carpe Diem!”

“looking for support for the government to recognise that a brain tumour is a disability and not just a condition ”

“Watching my beautiful wife fight so hard yet slowly deteriorate over the weeks and months. My heart is breaking. Where has our life together gone. ”

“I don't know how we are going to survive financially now 25% of any help I get will be taken away because of the 'bedroom tax' I may lose my home as well as everything else.”

“My 27 year old was diagnosed GBM 18 months ago. He was diagnosed with subclinical epilepsy yesterday. Brain Cancer is rubbish. He has set up a charity called inbetweenears.”

“We lived in fear for eighteen months before bereavement took over-it's like living in a parallel universe, there is so little help or understanding of this cancer :( ”

“Missing my best friend and wishing our babies had their lovely Daddy to grow up with, it's hard being half a family and that's all we'll ever be now x ”

“Keeping "bad news" from me will not make me better, it just makes me feel more isolated....”

“The worst part of having a brain tumour is waiting for things to happen with your treatement. Also wondering are they doing what they said they would? The waiting is mental torture”

“Please stop saying "How are you?". If I say to you "I am fine, then I am lying". Instead say, "how are things today? how are your symptoms? are you coping?" ”

“Had a emergency op to remove tumor 4years ago lack of any support after hospital discharge .Looks like things have not changed .Appalling”

“Just so tired of feeling tired all the time and wish that people would understand that just because a tumour is benign it doesn't mean everything is fine and dandy.”

“10 years I've lived with my tumour. This fight is so much more than just the tumour. Lack of understanding is the biggest hurdle. Needs to have the same care as other cancers! ”

“FIGHTING THE SCHOOL FOR OUR DAUGHTER TO GET THE SUPPORT SHE NEEDS CHASING FOR MRI SCAN DATES UNABLE TO PLAN FAMILY HOLIDAYS BECAUSE OF THE 'WHAT IFS' BENIGN=STILL LIFE THREATENING!”

“Without the support of my wife and family I could cry. She has researched and got the information the clinicians won't. I now know what the meaning of be strong for your family means.”

“My malignant tumour was diagnosed 6 years ago. My life was ruined, 25 year marriage destroyed, loss of job etc have fought it and think positive daily I am now thankful for every day.”

“Nobody can feel your pain, the heartache of leaving your loved ones to cope alone! At least I have time to tell them I'm not scared and that I love my wife and daughter.”

“Having to explain why grandad isn't around and can't come back ”

“Brain tumours are not just another cancer. They change the brain. This can mean a different personality appears, they loose their memories, or even become violent to their children”

“Not "recognising" myself when I look in the mirror and wondering where "I" went.”

“There needs to be some honesty around treatments. Patients are not given options or choice. People need information so that they can decide which treatments are worthwhile. ”

“I can't be strong for my family all of the time, Sometimes I need a shoulder to cry on,”

“I can't help being tired most of the time ”

“Dont feel sorry for me, I am not brave . I have no choice I have to cope, ”

“You watch your child being pumped full of poison for a BENIGN tumour You watch your child struggle daily with vision and behaviour problems. BUT you are grateful as they are HERE.”

“Expected a diagnosis of fluid in ear after years of constant ENT problems. Letter received stating tumour on scan in 2011 has now grown in Dec 2012. Total shock didnt know I had 1!”

“To watch your daughter become disabled after surgery. Lose her job, driving licence and freedom is very hard. Then you have to fight for every bit of help and it still continues.”

“Devastating. It appeared out of the blue and robbed me of my husband in 10 weeks . We were told the hard cruel truth on day 1. No hope. ”

“Feeling empowered enough to stand up to consultants and doctors and not only ask questions and expect understandable answers, but being able to say 'No' to them”

“The tumour has changed my wife's personality so much I no longer see the person I married and love. She's no longer able to show me or the kids any love. I feel so alone & trapped.”

“my wife died of a brain tumor we got no help or seport till the last 2 months then we got a carer 2 nights a week so i cud go 2 bed came down in the morning 2 find her fast asleep ”

“Not having to ask all the time but having the way forward propsed to me and all options fully explained. Is far better that "living in the Balance" with no form of rehabiltation. ”

“To be told you have a brain tumour and then be sent home with no support or information and have to wait days for your neuro oncology appointment - very isolating and scarey”

“I have suffered on and off with a brain tumour for 7 years. We haven't been offered any counselling ever. Life is tough as I can't drive. I have children and want to see them grow”

“Becoming a number as opposed to a person, being asked for hospital, NI, date of birth and finally a name if you have any query/enquiry”

“get told your child as a tumour and as soon as u leave the hospital your fogotten”

“being told because its just a tumour and not cancer can not get dla and have to fight for it”

“hi my son as a tectal plate glioma tumour and as a vp shunt fitted have appied for dla and told not in titled to anything anyone else haveing the same problem now got go to court ”

“The realisation that your best friend is beating themselves up for not being able to do more, when it's me who won't/can't let them "in" because I don't want to lose anything else”

“Wanting a relationship but thinking "who's going to want me now" and "how can find anyone when I can't even meet them halfway, or even if I will feel up to meeting"”

“Sometimes, when I say, "I am fine", I want to someone to look into my eyes. and say, "Tell me the truth."”

“Being told my hubby had a brain tumour but had to wait 6 weeks for a biopsy. He died 9 weeks after diagnosis no biopsy no treatment. The hopelessness and pain will haunt me forever”

“As if cancer isn't hard enough to get used to there is the daily anxiety of epilepsy because of the brain damage the tumour has caused. ”

“The feeling of being alone in this battle, you may have partner, children, family and friends but its only YOU who can fight x”

“Finding Brainstrust and the chat room a real help in the healing process and being able to share your worries with like minded people x”

“end of life care was excellent, I wish the rest had been as good.”

“you feel very isolated before and after diagnosis and need 'the system' to come to you with info, not leave it to you to find it.”

“When you say "At least it's just a tumour" don't be surprised when I reply "IT'S GOING TO B****Y KILL HER!"”

“No I can't have chemotherapy, it won't work on my tumour.”

“Don't tell me how, or what, I "should" be thinking, feeling, or doing..... ”

“I have to look at the negative, in order to "find" a positive and sometimes there is NO positive to be found.....”

“I wish some friends and family could have been more supportive. Their lack of understanding made a very difficult time so much harder.”

“Being angry at yourself, because you're angry with the patient for not being thankful they are still alive....”

“Feeling angry at the doctors for not finding the tumour sooner, especially when you knew just knew "something wasn't right"..”

“watching your best friends life be snatched away from under feet, and not being able to do a single thing to stop it....”

“It's been nearly six years since my wife's brain surgery. Every time I hear or meet someone else with cancer I stop. And I think a little prayer that hers never comes back.”

“1. knowing that it's your within your rights to seek more than one opinion 2. not being made to feel awkward about doing so. ”

“Being told your tumour is benign is wrong because benign means 'causes no harm'. Doctors should refer to 'low grade' and explain it properly to the patient.”

“Reading the word 'palliative ' on you Son's notes .”

“Don't ask "why" I'm angry....just accept that I am.....”

“When every day is a struggle being told "be glad you are alive" does not make it so (or happen, or me feel it, can't quite get the right words)......Maybe its all of them?!”

“Radiotherapy is not like antibiotics, when you finish the "course" you are not "better" !”

“knowledge is power, go in knowing what your talking about ask for what you want, this is your life, if you don't like one hospitals answer don't be afraid to find another opinion”

“Even though you are told that you will loose some/all of your hair...nobody prepares you for the shock and sadness you feel when it does start to actually come out.”

“The day I heard the words. I don't want you to worry mum but I have a brain tumour changed my life forever. I feel as though my heart has broken in two. Onwards and upwards x”

“Nobody from the hospital gives you any information about brain tumours when you are diagnosed. You are just left to try and find it all out for yourself and struggle through.”

“Trying to "be positive" when I really feel angry, scared, sad, ill/unwell, useless, alone and "why me?"”

“There was a real lack of knowledge of dealing with brain tumours by our local health professions. They didn't understand our real needs.”

“If there is any suspicion, however small, that it may be a brain tumour, a scan MUST be carried out, early diagnosis can be crucial to recovery”

“one day you are a wife the next day you are a carer and your life has changed for ever!”

“Not being fully aware of what Radio Therapy involved, the constriction of the plaster of Paris mask as it dries, and being "Fixed" to the table by it during treatment...”

“Working out what forms are asking for due to comprehension issues, being asked to make "snap" decisions for the same reason.”

“Living on my own everything becomes a challenge, from being told to surrender my driving licence and resultant loss of independence to working out what official letters mean.”

“Waiting 2 or 3 weeks for results from a scan is a long and anxious wait. There should be a shorter time between scan and results.”

“Siblings of children who have brain tumours get very scared too! We would have liked to have had someone available for our young son to talk through his fears with. ”

“We were very thankful our daughter's tumour was benign, but because of this we were given no support after leaving hospital. We had still been on that dreadful journey.”

“My wife went to the GP for 2 years complaining of headaches before they sent her for a CT scan to show her there was nothing wrong. Only then was a grapefruit sized tumour found.”

“To know that my friends & family suffer the effects of this tumour probably more than me - to see the worry on their faces when they think I'm not looking - breaks my heart.”

“Not being given the full picture by your neurosurgeon, only their personal opinion based on their capabilities and experience. What they can't do, doesnt mean another surgeon cant.”

“I dont feel there is enough support for the children I had 2 teens and they were very concerned, trying not to show how frightend they were and didnt have any where to turn to.”

“I woke up in Southampton hospital in one afternoon March 2010 after having had several seizures the night before. I have since had surgery, radiotherapy and chemotherapy.”

“How do we spread the word that patients can move to a new consultant - it is too easy to believe you are stuck with a generalist oncologist when there are specialists out there?”

“Helen is right. And the DVLA does not make it easy to get your licence back - everything is still done by snail mail, no option to do it online and there are not clear guidelines.”

“seeing my 11 year old son go through treatment was heartbreaking raising awareness of brain tumours is so important ”

“My husband was lucky. From the time I took him to the GP to the time he went down for surgery it was 46 hours 45 mins. It should be like this for everyone. He is still battling.”

“I wish everyone were made aware or at least more aware of brain tumours and brain cancers, that way it would help those of us with bts to feel understood and less alone. Being able to talk to others with and without brain tumours would reduce the fear ”

“No follow up after release from hospital after biopsy. I had to contact a Brain Tumour Charity to ask what happens next as hospital & GP didnt offer any help/support. ”

“there”

“I don't think about my tumour half as much as everyone else. I think its harder on the carers and I don't know how to support them.”

“The loss of independence so the loss of the driving licence. My partner hates asking for a lift and doesn't want to be a burden. ”