I am fund raising  for Brain Tumour research because only 2% of funding goes towards brain tumours. Only a tiny percent of this 2%  goes to actual brainstem tumour research. So raising funds for brainstem tumours is vital. 

In 2017 I was diagnosed with  an hemangioblastoma inside of my brainstem at the level of C1/C2  cervical spine. 

I also hope to raise more awareness for brainstem tumours and the symtoms that they cause. During my own journey I was shocked at the countless amount of medical professionals that didn't know my symtoms were red flags for a brainstem tumour and how I was treated because of this. This needs to change! I hope that specalist can read this and learn from it to help patients in the future and do better.

It was a struggle to even get diagnosed as I was repeatedly told my severe head pain was just a migrane. I told specialist I thought I had a brain tumour and then pointed to the back of my head/neck were the pain was. I was laughed at and told nothing would be there so I had to really really push on a MRI which revealed the tumour exactly where I said it would be. I was first given the news by my mum who had a call saying they found a lesion in the brain. Then whilst in hospital after another scan my tumour was confirmed  by a Dr who was on her way home so she just popper her head around the door and said “yes it's definitely a lesion“ so I said that's a tumour right? She said “we don't really like to use that word but yes but I can't tell you what they think it is as it's a really long word and I can't pronounce it sorry... Are you okay? Okay bye" and then I was left alone all night. 

As months went by my symtom list grew and then sell symptoms became worse. I was told that they were not possible and not linked to my tumour. The specialist said my symptoms were due to the fact that I couldn't mentally cope with the diagnosis so this had just made me think I had these issues and therefore I had a functional disorder.  I was sent to a psychiatrist who didn't agree with this assumption. 

A few years later I finally after again much fighting I get to see a great epilepsy specialist who belived me when I said I thought I was having seizures and he captured them on a 5 day EEG. But the rest of my symtoms was to still  go ignored by countless specialises. I would be in A&E many many times with my family frantically trying to get me help only for us to get no where. I lost count of the amount of times I was told my symtoms wasn't possible. Before my seizure diagnosis I even heard staff whispering to leave me be because I was faking my seizures. Which was honestly just horrendous. 

I continued to sicker and sicker. Having the people who are meant to be taking care of you not believe you and treat you this way is just horrific, I can't even put in to words how much this has affected me and my family. 

I was told my tumour would be stable and we wouldn't notice growth untill I was in my late 40s maybe which would be another 20 years. But then another consultant told me that my tumour was a type that could rupture at any point and if I wasn't treated straight away after the rupture I would die This consultant said that surgery for my brainstem tumour was  too risky and I either wouldn't make it or would be severely paralysed . 

Over time the pain and symtoms becoming unbearable and I began declining fast. I told my specialist that I think my tumour it's growing but they said it wouldn't be and refused to being my scan forward. When my routine scan came they said it was indeed growing. My mum had also been asking for a while if the scan shown fluid as that's what it looked like to her but she was told no it's not. We now found out there was fluid around the tumour and it was visible on the scan. I was told this tumour now needed to come out due to it growing. 

Knowing I couldn't now trust these my current surgeons and specalist my mum got me an appointment with a specialist she sees for her own condition with tumours and he put me in touch with a team a Salford Royal hospital who decided a Dr D'urso was the right man for the job. I also want to point out that if it wasn't for my mum I would not be here today, she was there with me throughout it all and never ever doubted me, she fought for me when I couldn't fight for my self. She saved my life. 

Before meeting my new surgeon I went on holiday to Thailand with my boyfriend and it was honestly one of my favourite holidays ever. I got to do a life long dream and visit an elephant sanctuary and help out with them and the rescue dogs. I was lucky that the pain and sickness only interrupted a few of those days that week. 

When I met Dr D'urso I was in a wheelchair throwing up and in alot of pain. He was honestly so so lovely and kind. He listened to everything I said. He didn't interrupt me or rush me. He did a few simple tests to show that one side of my body was in fact not responding as well as the other. He told me the fluid around my tumour was also growing and he believed steroids would help relieve my symtoms. However  I still needed this tumour out and he was confident he could do it. But there was massive risks involved. He told me I could choose when I had my surgery. I could wait a few months if I wanted a holiday first but we can't wait too long. I knew he was trying to tell me this would kill me if left. He said the bigger the tumour gets the harder it is to get out so we must act fast. 

So I took the steroids, which helped massively! If only I was taken seriously before and given them I wouldn't have had to  suffer so much as I did. I went on a lovely holiday with my mum and sister for my mums birthday. It was just what we all needed before facing surgery. 

When I got back we sorted a date for February. My neurosurgeon was refreshingly honest with me and told me all of the risks. There was literally a page and half of them ha. He said he knew that my right side would definitely be affected as the tumour was tucked in to the right corner inside the brainstem. He said I may wake with a tracheoscopy as the swelling after removing the tumour can squash the brainstem and stop me from being able to breath. There was a chance I would never walk again, never breathe for myself again. There was a possibility I would be paralysed completely or down one side. There was a risk of stroke and of course death. There was a 20% chance of death with this surgery. Which doesn't sound alot but usually the % is 1 or 2. So this was very very high risk surgery. But I knew I had to go for it, I trusted him and I knew if I left it then I would die anyway. 

Before surgery I wrote everyone close to me a letter. I wrote a list of my passwords and what to do with my animals. I planned all the details for my funeral. This was actually something I tried doing for 2 years but every time I tried to write I just couldn't. It was honestly incredibly hard to do, just thinking how would everyone cope if they lost me was just heart breaking. 

On the day of my surgery my mum, dad, sister and boyfriend all came with me. I was told I was first in for surgery so I was put in a room on my own to get changed and told I could have one person a time in there with me so we didn't have much time. Dr D'urso popped in to say hello which was nice of him. Everyone came in to sit with me for a while and everyone dealt with it in their own way. I tried my best to stay as cheery and strong as I could so I didn't upset anyone further. When the team came to collect me on a bed to go for surgery they was nice enough to give us all a minute together to have a little cry and a hug. 

As they was getting me ready for surgery I had a chat with the surgeon who would be assisting Dr D'urso as well as the  anaesthetist and the rest of the team. Everyone was really, really lovely and calmed me down and held my hand when I cried saying I was scared. They got me talking about Harry Potter and then I was asleep. 

I remember waking up in the recovery room and thinking omg I'm alive. I then moved my toe and though okay I'm not paralysed. A lovely nurse was there holding my hand and stroking my head. She pressed on different areas and checked I could feel it. I felt it all but I noticed my right side didn't have much feeling but I didn't care, I was alive! I remember being really, really thirsty and asking for water every few minutes and then Dr D'urso came to see me with the biggest smile on his face, he said he couldn't believe how quickly I had came around and he was so happy to see me talking and smiling and he held my hand for a while. Then the other surgeon came in to see me and also couldn't stop smiling. They thought the operation would take 12 hours but it  took about 8. 

I was then taken in to my room in the intensive care unit and met my lovely nurse for the night. I remember realising I couldn't move my neck, like at all, it was like I had a neck brace on but this was due to them cutting though the muscle and nerves so they said it all needed to knit back together again. I don't remember being in much pain at all really. The nurse then went to collect my family and I saw them nervously coming in one by one and then all smiling to see me sat up in bed awake. They were told to expect me to be unconscious for a few days and with lots of tubes coming out of me. We sat and talked for a while before they left for me to sleep. I was woken every hour through the night to answer a series of questions just to make sure my brain was okay. 

The next day I was woke up and asked to try to sit on the chair to eat my breakfast. As soon as I sat up I got the most intense banging and dizziness, which was due to loosing some CF fluid during surgery. The nurses said I could lay down if I wanted but I knew I needed to push myself. I stood up and nearly fell to the floor as the room span out of control, I sat in the chair and couldn't stop gagging, nearly being sick. After a few minutes this passed and I was okay.  

Later that day I had physio come to see me and we did a few stretches and a few steps round the room and she said she was really pleased with how I was doing. I couldn't raise my arms up but she said things will improve. I then went for a MRI scan to check all the tumour was gone. I seen Mr D'urso again who said he's fairly certain he got it all!  He wanted me to wash the wound every day for a week. So my mum sister and boyfriend came again and my mum and sister helped me to get a shower and dress. I was rather grumpy ha. Then my best friend and her boyfriend came to visit me which was nice. 

The next day I had another physio session and this time we went for a walk up and down the stairs. I could only shuffle and it was so hard to walk when your whole body feels likes it's pinned straight up right ha. During surgery I had a metal plate fitted to secure the top of my spine but it felt like the whole spine was plated ha. She said she was happy for me to continue at home as I was doing so well. Dr D'urso then came round to see me again and said he was amazed to hear I had been walked up and down stairs and I'm doing far better than anyone could have imagined. I was so so proud of myself and thankful to him for saving my life. He went to shake my hand but I gave him a big hug instead. He told me all the tumour was gone and the pathology shown the tumour was a hemangioblastoma which is a rare vascular tumour. He said if I want to stay in hospital I can but if I want to leave then that's okay too. So less than 48 hours after surgery I went home 🖤. 

I was on steroids for a few weeks to help with the swelling inside my head but when I came off them the fluid came back very fast! The pain was unreal, and I lost all feeling down the right side of my body. I knew I was dying, I felt my heart rate getting slower and slower. So my mum rang the hospital and her and my boyfriend rushed me to the A&E in Salford. I'm so glad they didn't take me to the nearest one in Liverpool as they wouldn't have acted quick enough. As soon as I got in hospital my blood pressure was taken which kept dropping. I was given steroids through IV and after about a hour I felt much better! The feeling started to come back. I had a CT which shown fluid so I was put back on steroids. Afterwards when I came off them again I noticed the pattern repeat so I went to hospital straight away. This time Dr D'urso came to see me and said I needed more steroids and  we will wean off even slower this time, but I get to choose what dose and how fast I think I should come off them as I know my own body. This was such a relief to hear that he actually trusted me in this way. So a few months later I finally came off them! I had put quite a bit of weight on with them but never mind. It took about 3 months to be able to move my neck again. 

I'm nearly 8 months post op and I'm doing really well. I've regained some strength and there is only a bit of a loss of sensation on my right side now. I still get memory loss and confusion and some pain due to nerve damage but nothing like before and no more seizures! I have a few symtoms now and then but I'm so much better than I was. I'm incredibly lucky and my surgeon and his team were miracle workers and I can never thank them enough. 

Dr D'urso has continued to be there for me since surgery. I have had a further follow up MRI which shown no regrowth! I did tell him I felt something has been missed from the other hospitals and could he check the whole brain. Which he very kindly did and has found what he thinks is a cyst on my pituitary gland so I'm now just awaiting a appointment for that. I also have a permanent droop to the left side of my mouth which originally happened about 3 years ago when I felt a sudden pins and needles down my left side which then went to numbness and I felt very confused and stunned. I did nothing about it at the time as I was too used to not being taken seriously. The next day my eye had drooped dramatically. I had then gone to A&E but they said they didn't know what it was and the CT was okay. So Mr D'urso is also sending me to a neurologist for this as he feels it's unrelated to the tumour as do I. 

Mentally I seem to be struggling a bit more. I think the whole thing has left me with PTSD and the whole thing is still very raw. I lost my cat in May and she was my soul mate. She wasn't just a cat she was my best friend. She's been there for me through everything, every time I was sick she was there. Even when I was temporarily paralysed from a seizure she pushed the paramedics aside and lay on my chest hugging me which helped me to move again. She had a undiagnosed heart condition, cats usually  don't show symtoms untill the very end. She collapsed one day and by the 3rd day was having a stroke every hour so I had to let her go. And I don't think I've coped well ever since. But I know she has become my guardian angel now. 

The symtoms I had were immense pressure to the back of the head, migraines, sickness, nausea, virtigo, back pain, neck pain, neck stiffness, seizures, loss of sensation to my limbs, pins and needles in all limbs, blood pressure and heart rate issues, fatigue, confusion, memory loss, balance issues, mixing words up, ringing in my ears, numbness, feeling drunk and dizzy, drooping of the eyes and mouth, twitching and there are probably more that I can't think of ha. 

But some of these symtoms are classic brainstem tumour symtoms. Yet they were ignored. Hence my story so people can be more aware. 

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