The Warrior Project: Portraits of Beth, Brain stem Tumour

Here we go folks, a brand new installment of ‘The Warrior Project’, a series of portraits of people who suffer or have suffered from mental or physical illness or disability.

Today we have the stunning Beth! I discovered her online a couple of years ago through her modelling work but soon realised there was an awful lot going on in her life aside from her modelling, and she kindly agreed to share her story of her battle with a brain stem tumour (amongst other things!) and being taken seriously by the medical system. I’m in love with her pictures too, we went from glam to lingerie to a bit of a weird horror vibe which is always my jam!! Heres more about her amazing story in her own words!

(Black gown by Scarlet Tayla, corset in the blue set and 1st harness in the bed set by Twilight Siren Corsetry )

“Hiii, I'm Beth (modelling name Veedma), I'm 27 and from Liverpool. I haven't been able to work for a while now due to my on going health conditions, but on the good days I love hiking, caving, climbing anything outdoorsy really.

On the bad days I'm happy cuddling my 6 animals, doing a bit of drawing and watching a good serial killer documentary.

My journey began while I was training for the army in 2010. That's when my health started to decline and I was diagnosed with an over-active thyroid and not long after, a thyroid storm (Thyroid storm, also referred to as thyrotoxic crisis, is an acute, life-threatening, hypermetabolic state induced by excessive release of thyroid hormones). This then resulted in me failing my army medical which was devastating to me as it was something I wanted to do from a small child. Over the years I tried to hold jobs down and was always getting in trouble for being physically sick, having panic attacks, being exhausted and falling asleep at work.

Over time things started to make sense as to why I was feeling so awful as my thyroid was out of control and I was given radioactive idodine to help, but this just made me worse making my thyroid go Underactive, activating Graves eye disease and caused alot of scarring inside my throat.

After that it was just one thing after another really.

From 2010 to 2017 I was quite the illness collector:

Overactive to Underactive thyroid

Graves disease

Graves eye disease

Fibromyalgia

Adrenal fatigue

Chronic fatigue

Chronic Migraines

Overactive bladder and

Ehlers-danlos syndrome hypermobility

All of which are extremely exhausting, debilitating and really bloody hard to cope with but as most of you with know how invisible illnesses mean most people think you are just being over dramatic and lazy!

In about 2016 the migraines changed. They got so much worse which I didn't even think was possible. I had so much pressure in the base of my skull and it put me in bed throwing up for days. I had to take many different medications for a while and then really push my Dr to send me to a neurologist. She then also just wanted me to take more medication. Eventually I said enough is enough and I said I think I have a brain tumour. I was laughed at and she said she wasn't concerned. I told her I was and that I wanted a MRI. She said she would reluctantly do it.

And there it was, right where I said it would be. I was told that it was a hemangioblastoma inside of the brainstem and C1 spinal cord. They said it was impossible to feel and it was put down to a incidental finding. Over the next year I told them I thought I was having seizures. I was told my symptoms were just in my head and even sent for a psychological exam which I passed but it was horrific all the same. The people who were meant to care for me didn't even believe me. I even heard nurses whisper in halls saying "leave her to it, she's not really having seizures, she's just after attention"

After seeing a seizure expert and given the right tests I was officially diagnosed with seizures as there was clear seizure activity in my brain.

Over the next year my health started to decline really fast. I was losing feeling in my left side, pins and needles, ringing in my ears, vomiting, seizures, balance issues, nausea, constant pain, I sometimes didn't leave my bed for 5 or 6 days a week, numbness, I'd stop breathing in my sleep, mini strokes, I was confused, memory loss. I knew I was dying. My and my mum spent many a time begging for help for me to be told I couldn't be having these symtoms. They put it down to me not coping with my diagnosis well and if I wanted this tumour out then "I could have a go but I'll probably just paralyse you". Years of being told it was in my head really took its toll on me and my mum psychology.

We tried to get more opinions in other hospitals who also just agreed with the one I was under and told me I needed radiation which I refused because I knew it would just do me further harm.

I begged my surgeon for a quicker scan because my tumour had grown. He told me to stop emailing and calling the nurses for help as this was counter-productive and he wouldn't scan me earlier because we wouldn't see growth from my tumour for another 20 to 30 years.

My routine scan came and went. I was called in to see my surgeon and he was shaking like a leaf. He told me the tumour had grown and it needs to come out. I felt sick, I knew this was life or death but I knew he would kill or paralyse me as the hospital has a zero success rate with the brainstem so we needed to find someone else.

My mum never doubted me for a second and spent most of her time doing research which the specialists were never interested in. Eventually my mum got me to see a specialist she was under who recommended a team in a hospital in another city. He made the referral for me and I was given Mr D'urso. Straight away he was incredibly kind. I was in a wheelchair at this point as I collapsed earlier in the hospital and he made sure to get a chair for my boyfriend, sister, mum and dad. Everyone wanted to come as he was our last hope.

He was shocked I'd had no help of relief and immediately put me on steroids. He told me the fluid was also growing and that my brainstem was being crushed. He did simple reflex tests to show my left side wasn't responding well and he knew I wasn't making up any of my symptoms which just made me cry to have a surgeon actually finally believe me.

He told me I had time to delay surgery a few months for a holiday but I didn't have much longer than that.

In a way I'm glad I didn't really have a choice as it was an incredibly hard one. He told me this was one of the most risky and serious surgerys to perform and there was a 20% chance I wouldn't survive, he said there was a risk of a hemorrhage as my tumour was connected to a main artery. He told me to prepare to wake having a tracheostomy and breathing tubes. He said to my family I may not wake for a few days and I may need to learn to walk and talk again but he was confident that he could save me and I would be okay. We all trusted him completely. I think I tried to just put my feelings in a box the best I couldn't because I didn't want to scare or upset my family even more. Before surgery I wrote everyone letters and planned my own funeral just in case I didn't make it. I just felt really bad on everyone else. Like what would the animals do they need me? My family and boyfriend won't cope. So before I went in I cried, but for them not for me. Because if I didn't wake up I wouldn't even know about it or have to deal with it.

I was wheeled in to the operating room and everyone was so lovely to me. I drifted off to sleep talking about Harry Potter haha.

I woke about 9 hours later in the recovery room after a 8 hour surgery. I remember a lovely nurse stroking my hair and the first thing I did was think of Beatrix in “Kill Bill” saying "Wiggle your big toe" and what a relief it was to know I could move my legs! My surgeon came to see me along with the other surgeon who assisted him and he had tears in his eyes. He said he couldn't believe how alert I was and he was so happy to hear me talk. They didn't need to give me a tracheoscopy or any breathing tubes and I only took about a hour to wake up.

They tested my movement and feeling and I couldn't move of feel much of my right arm or hand but I didn't care because I was alive.

I was taken to ICU and my family and boyfriend came in really slowly as they was expecting to see me unconscious with tubes everywhere. But they said they couldn't believe they seen me sat up smiling at them ( I was pretty High haha).

The next day the nurses got my up which nearly made me throw up due to loosing CF fluid. But later on I got my MRI and had some physio and I managed to shuffle down the hall and back. That night my surgeon came back to tell me the MRI shown he got the whole tumour (hemangioblastoma). He said he just couldn't believe how well I was doing and was so shocked to hear I have been walking about and he couldn't have even imagined it went so well. So I gave him a massive hug and thanked him over and over for saving my life.

The next day I did some more physio and they said they were happy for me to recover at home. My surgeon said I could stay longer if I wanted because he didn't expect me to leave so fast but I said I was happy to go home.

I was given steroids to take for 3 weeks but after finishing them the pressure come back really fast, I was very quickly becoming unresponsive and I was paralysed on the right side. My mum and boyfriend rushed me back to the hospital and they were great, getting me seen to straight away and scanned. The scan shown I had fluid building up in my head which was crushing nerves again so I was given steroids through IV and had to stay on them another 3 to 4 months.

It look about 3 months to be able to move my neck again as all the muscles were cut and I had to have the top part of my spine removed and plated. It took about 9 months for me to regain more feeling and strength. A year and 5 months later its about 70% of what it was I'd say but I can't really feel much of the right side of my head at all.

I've also not had a single seizure since surgery!

Since surgery I finally found out I have endometriosis, my surgeon found a growth inside my pituitary gland, I have a polyp inside my cheek sinus and recently I was diagnosed with osteopenia after telling them I felt I may have it.

So yeah lots going on ha.

Day to day is different. Some days I feel great and I try to exercise 5 days a week to keep my strength up. But other days I'm in so much pain again that I'm in bed all day. I've recently had a bit of a situation with my central nervous system with a possible bleed and small stroke so we are trying to get to the bottom of that. I have 6 animals so the house gets messy quickly ha. But if I'm not doing great I just accept it. If I need to sleep I sleep. If I have to rest I rest. If i can only tidy one room that day then that's that. I think it's very important to listen to your body. It's good to push yourself but just know your limit. If I'm doing something that I know will take alot of energy then I will rest for a few days before hand because I know its going to really take it out of me and then I'll be absolutely buggered for days after it too. But that's okay.

Day to day, my biggest difficulties have been being believed. I've had to fight incredibly hard for medical professionals to listen and it's just horrific. It's bad enough having people who know you just think you are lazy or attention seeking. I do still get annoyed when I hear people are saying I put it on because they seen me post up I went here or there or they saw me out that day. But you aren’t going to see me on my bad days and I don't post photos of my bad days either!

I hope in my future I get to go to college, then uni to become a paramedic. I found paramedics were mostly the nicest medical professionals I met and they were actually more knowledgeable than the doctors a lot of the time, they also always took the time to listen to what I was saying.. Id like to do the same for other people one day.

My advise to others is always trust your gut-you know your body better than anyone. If you know something is wrong go and get as many different opinions as you want. Always do your research. Doctors like to tell you not to use google but it's actually an incredibly useful tool and it's helped me get nearly every single diagnosis I have by knowing what tests to ask for.

I loveeeed my photoshoot with Donna. She was really down to earth and the shoot was so relaxed and fun. I found it really helpful that she works super fast because I get tired really easy so this was perfect for me! Bonus points for having a tiny Mavis there too <3

My photoshoots have always me feel really empowered and strong. Before I got really sick they used to mainly be a confidence boost as I was bullied so badly. But now I look at the images and think wow like how bloody amazing that I have survived a brainstem tumour and I'm still here doing photoshoots. They also make me really proud to see the progress I've made to loose all my steroid and medication weight because it's not been easy.

If anyone is considering a photo shoot with Donna I would Say ABSOLUTELY BOOK IT NOW! You won't regret it.

Thankyou again so so much Donna and I can't wait to be back <3

Here are a few pics that Beth kindly sent me of some of her surgery aftermaths, what an amazing woman she is to not only be able to survive such a traumatic diagnosis and surgery, but to be able to fight for herself every step of the way. I dearly hope the future brings her to a place where she can finally trust the medical profession to truly have her best interests at heart and continue with her dream of becoming a paramedic!”