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Funding for research into brain tumours web forum

Petitions Committee

This forum is now closed. The deadline for comments was 5pm on Friday 30 October 2015.

Message to forum contributors

Thank you to everyone who has taken the time to contribute to this comment thread. We have been overwhelmed by the number of very moving stories which you have been willing to share with us. Please accept our sincere condolences to all those who have lost loved ones or who are currently suffering as a result of a brain tumour.

All of the responses posted here will be enormously helpful to the Committee’s inquiry and we are extremely grateful.

The Committee will now hold several ‘oral evidence’ sessions to continue gathering information on this issue. It will also hold an informal meeting with those affected and we hope that will include some of you.

The first formal session is on Tuesday 3 November at 2.15pm when the Committee will be speaking to the petition creators and some charities about many of the issues you have raised. You can attend or watch/listen live online.

We hope you will continue to follow the Committee’s inquiry. Please follow the inquiry page for updates, or follow the Committee on Twitter: @HoCpetitions

Huge thanks,

The Petitions Committee team

Return to the funding for research into brain tumours inquiry page

1106 Contributions (since 19 October 2015)
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Total results 1106 (page 11 of 111)

Kim driscoll

29 October 2015 at 18:34

I watched my mum fight a glioblastoma grade 4, 14 years ago. Until then she was a fit lady in her 50's . It struck without any warning. She lost consciousness and was rushed to a regional hospital 70 miles away. I know this happened 14 years ago, but sadly listening to other recent stories, the professional attitude is still the same.... They spent 10 hours "de-bulking" my mum's tumour to give her some time to put her affairs into place. She didn't recover quickly from the operation and I felt they weren't interested in her after the operation..... No visit from palliative nurse etc. More information in hospitals, leaflets, specialist nurses, I was not given any leaflets, help-lines to read, talk to. Cancer awareness in other areas have improved but this area is under funded considerably.

Louise Frase

29 October 2015 at 17:55

I was finally diagnosed with a benign meningioma after a whole year of feeling generally unwell. The GP's kept putting it down to a virus as I didn't have the typical sore head and sickness associated with a brain tumour. They were basically at a loss as to what was wrong with me. I then fell seriously ill and was taken to hospital where they thought I had suffered from a stroke. Thankfully an MRI scan picked up the tumour. There needs to be more government funding available to help tackle this terrible disease and to help the diagnosis be made far sooner than is happening just now.

Sheilagh King

29 October 2015 at 17:43

I know four people affected by Brain Tumours. I believe funding for research is crucial.

Passalari Eleni

29 October 2015 at 17:25

Please don't let more people helpless !!! Give them hope !!!

Steve Mault

29 October 2015 at 17:00

I was diagnosed with a grade 3 anaplastic glioma in March 2015, aged 43. As with so many other stories here, it came as a complete shock. I had started a new job in January 2015 at a wonderful school in North Devon (I am a Secondary Mathematics Teacher), and all was going very well. Then, at the end of February, I had a seizure (luckily at home). Initially, I was thought to have had a stroke but subsequent CT and MRI scans identified the tumour in the front part of my brain. After consultation it was decided to remove the tumour but the post-op biopsy showed it was malignant. Luckily, I qualified for a clinical trial, and so was concurrently given radiotherapy and chemotherapy treatment for a period of 6 weeks. The impact has been psychological more than physical. I do not feel pain except for that that comes from a realisation that I may not see my two young children (currently aged 7 and 5) reach their teenage years. I am back at work but this means that I have to stay away from my family during the week because I am not allowed to drive and the commute is too long using public transport. I realise that brain cancer is a hard sell since the brain is complex and the relative improvement in patient outcome has been small in the past decade or so, but that, surely, is a reason for more government support not less. So many people are affected by this, above and beyond those of us with the disease, and all of them need support too. Please allocate more funding to help all of those affected by this dreadful disease.

Jeanette Hartley

29 October 2015 at 17:00

devastating

Julia

29 October 2015 at 16:56

According to my neurosurgeon I was lucky my tumour was discovered when I had laser corrective surgery. People with my type of meningioma don’t normally see a surgeon until there sight has completely gone and their tumour is the size of an orange! Devastation is the theme that runs through my story and I’m sure plenty of other brain tumour fighters. Devastation of being told “ you have a brain tumour” Devastation of being told you require surgery to save your sight Devastation of going through a 12 hour op waking up to complete lose of sight in your right eye, previously it was only partial loss. Devastation of being told they could only debulk the tumour as it was too dangerous, not only is it growing around your optic nerve but also around your carotid artery. The tumour is now inoperable but hey its benign. Devastation of being told it’s a case of quality rather than quantity of life! Devastation of being told the tumour is growing again and is threating the sight in your left eye. Although the tumour is benign they recommend you have radiotherapy to shrink the tumour Devastation of being so ill during and for a year after the treatment finished Devastation of seeing your husband and son feeling helpless as you fight this battle, knowing you will never be the old you again. Devastation of finding out Brain tumours are the biggest killer of children and people under 40 yet only receives 1% of any government funding, all other funding is done by charities. Devastation and disbelief that treatment and survival rates for most other cancer are prevalent and published regularly in the media. Yet this government gives a low priority to funding and we rely on charities publishing statistics. How many people have to die before the government will take notice and commit more to research, support for fighters of this disease and ultimately a cure.

Margaret Robinson

29 October 2015 at 16:50

My husband was diagnosed with a GMB4 tumour in July 2014...after we paid privately for an MRI scan as the local hospital would not do a scan as my husband didn't display the any of the classic signs of a brain tumour, he had no headaches or sickness. Our lives changed overnight. Between July 2014 and February 2015 he was admitted multiple times to 4 different hospitals. We have found that general medical hospitals are very bad at dealing with what they term 'difficult cases' while the specialist neurosurgical hospitals and cancer hospitals are fantastic. Our doctor has also been fantastic. It's difficult to list the multiple ways are lives changed but it's fair to say that the life we had mapped out for ourselves was no longer possible. Our local hospice and the local Maggies centres have provided great support and offered help when we've been at our wits end. The integration of health and social care cannot come quickly enough for us. Social services have not always been helpful. Brain tumour research seems to be at the bottom of the cancer league table and yet it is often a death sentence. It's a bit like living with a time bomb in your head with very little hope of a cure.

Jayne

29 October 2015 at 16:47

I lost my very dear dad 33 years ago, he had an inoperable brain tumour and was 46 years old. He suffered for 11 years, he was such a kind, gentle man who fought so hard against the illness. Whilst my sister and I were growing up he spent a lot of time in hospital and as a family we were devastated to lose him. It saddens me to see that 33 years later many families are still suffering as we did. We would hope that funding and research would have vastly improved over time, please support this in the future.

Josephine Moss

29 October 2015 at 16:27

I would like to see a much higher priority given to brain tumour research. I find it pitiful that brain tumours are responsible for the highest number of deaths in children and adults under forty than any other cancer and yet still only receives around 1% of the cancer research fund. How can that be fair? In my case, I have had to watch and support my adult son through two major brain tumour operations, luckily, at the moment his latest follow up scan showed the remaining tumour to be stable. Brain tumour research gets so little publicity and it is not until you are faced with a diagnosis or someone close to you is, you realise how poorly funded this research is. Off course, treatments have been refined over the years but it appears that there is still a lot of unknowns and poor outcomes for too many sufferers and if this is to change and this dreadful cancer is to be beaten ... more funding is essential.

Total results 1106 (page 11 of 111)