Saturday 20 July 2019

Memories, PTSD and Pain.

This last week has been total shite.😥

I have been feeling really stressed. So much so that I couldn't cope, had switched off and gone to bed, or have been in an insane panic for no big reason. 😰

On Monday I decided to post something on my Hemangioblastoma Facebook group, saying 'The after (brain tumour) anxiety is tough at the moment'. As I did so I listed the reasons I felt I was stressed and with it I wrote down one of them - that my husband had just had a CT scan of his brain (for nasal issues) and we were waiting for the results...

The hospital had send a letter changing his follow up appointment to October, and so he called them after having the scan to say this wait was not acceptable. Mainly as the Dr wanted to see him shortly after taking medication and getting the scan, not 3 months after it. 

But they then offered him an appointment for this week!

Suddenly I felt sick, as I realized this had triggered a massive reminder of shock and fear in me of when I had my 'reassurance' scan.
Far to many 'What if's' for my brain to cope with. 
Sheer panic. 
It was like my nightmare was returning and we were going to go through hell again. 
I was terrified.

Plus some intense memories of the day I was called back to the hospital. Shown my brain scan pictures. Being told i would need urgent brain surgery! Realising how ill I was...  The day my world stopped for a while. The day everything changed.

I was feeling all the emotions again like they had just happened yesterday. Explaining it to the kid's all over again. 

I had thought I was 'over' this memory, but just waiting for these brain scan results brought it all back home in one PTSD hell... 

Yet I didn't even fully realise until I wrote it down...
tears pouring down my face... 

As I wrote these emotions down it did partly calm me in just realising the feelings I was having were not me going insane but the trauma.

It helped me even more on Tuesday to be told Dave's head was ok! 💓🙏💓 (They don't even want to do anything with his nose at the moment) But several times that day I had to bite my tongue to stop the tears. 

But that evening I felt totally stressed and panicky again, knowing it was the memories that were causing it. So I started writing it all down, feeling all my emotions and releasing them in floods of tears. 

Reminding my body 
'It's over'.

However the next couple of days I was aching and had sore spots and pains, I was getting so stressed again wondering what they were... 

Until I read a post about German New Medicine and pain (from Dr Melissa Sell) saying it is a resolution of a self devaluation conflict. 

"From the German New Medicine perspective, musculoskeletal pain is due to the Healing Phase of a Self-Devaluation Conflict.

While you are actively in a pattern of Self-Devaluation your body is receiving the message “I am not [strong/smart/beautiful/worthy] enough”.

The moment they resolve the Conflict the body begins restoring and refilling the tissue that was eroded during the Conflict. This is the Reconstruction Phase!
It is during the Reconstruction Phase that a person will experience uncomfortable symptoms. The area will be swollen, painful, and they will be fatigued.
When you are exhausted and in pain (especially pain that was not preceded by an obvious injury) it can be very easy to DEVALUE yourself for not being able to take care of your normal responsibilities and obligations to your family and/or job.
Add to that a trip to the doctor where they tell you “nothing is wrong with you, it’s all in your head” and this is the perfect storm for a persistent thought pattern of Self-Devaluation which is what started this whole thing off to begin with."

Oh my. 

So I cried even more!

With realisation that I had totally devalued myself. That I still struggle to find 'me' after this experience. 

Feel I shouldn't have been so weak, constantly worrying. Hating what I had done to my kids. What I no longer was.

I felt the worthlessness fully. Felt the burden. The pain I put my family through.

That I ' should' be stronger, fitter, more mentally stable. 

Not scared so much.

From the times when I could barely breathe from crying. 

When I felt numb, yet everything hurt ...

That it was somehow my fault for having this tumour, for reacting how I did.

But after reliving my past and accepting it - that my feelings and my pains were just a response to these memories and devaluation... (and having a good night's sleep!) I woke up to find the physical pains as well as my emotions had very much improved. 💖

As ever...I am working on the rest of me.😌

Very much looking after myself and being kind to me.

 I still need to heal. Another deeper layer.
So I can say 'I was scared' and also talk about Dave's brain scan being OK 
... without crying...💖


Saturday 13 July 2019

A Guest Blog: Craniotomy Me - Learning to live, cope and thrive with NF2

Continuing with reading blogs from others with Brain Tumours, I came across this blog by Megan Bugle, a 32 year old mum of two.  Last year, she was diagnosed with Neurofibromatosis II, and it changed her family's lives. 

"Life’s simple moments became more beautiful. Ordinary became extraordinary." 

This is her story: Craniotomy Me

One particular post really resonated with me, both with her thoughts on leaving hospital after her craniotomy and how tough it was.

But also it was similar to when I was waiting for my genetics testing.. and knowing that if I had it (a positive blood test for VHL), each of my kids had a 50% chance of having it too ... I have 4 kids...  

The day I got the letter back saying I didn't have VHL and therefore my kids couldn't have it was the best news I had - ever! 

So I cried when I read her blog post I have copied below: 'Two Miracles'

Two Miracles

Leaving the hospital after having my first craniotomy was very similar to leaving the hospital after having my first child. I was terrified; I was in pain; I had a new incision (rather than a new baby); and I had no idea how to take care of it.

Before my diagnosis of Neurofibromatosis II (NF2), before brain tumors, before craniotomies and seizures, I was a very normal person. On any given weekday, I took my boys to school, worked a full day, and made my family dinner. I had been an active person, not just chasing toddlers, but going to the gym, advancing my career, going on family bike rides, and escaping for weekend camping trips.

After surgery, everything was different. I needed help with everything. My husband, Josh, poured my water, dispensed my medicines, helped me to the bathroom, and so much more. Light was intolerable and sounds were excruciating. Even the sound of my own voice was enough to make my head pound. My whole left side was numb and tingling, making it difficult to walk; I left the hospital with a cane that I relied upon to keep me upright. My daily goal after surgery was to hold my head up for 30 minutes a day.

Despite all of the tough adjustments, the hardest thing I’ve ever had to do as a mother is prioritize myself. Having brain surgery temporarily forced me to take a backseat in the daily lives of my children and focus on my health. My husband took care of me, and his mom took care of our kids. She was able to provide them everything that we couldn’t during that time; routine, consistency, and more support than we could have asked for.

Slowly, I made progress. Every day brought small triumphs. After a week, I ventured outside for the first time, and sat in our driveway for a whole hour, watching our boys play and eat peaches.

After two weeks, I was able to sit in a shaded pool chair for two hours. I couldn’t get in the water, but I could watch our boys splash each other, and smother sunscreen onto their bare skin.

After three weeks, we went out for dinner for the first time;

After five long weeks of healing, my weight restriction was finally lifted and my neurosurgeon agreed it was safe to hold my children. I hadn’t held them since surgery. Think about that one for a moment… I had a 1 and 4 year old, and I couldn’t put the baby in his high chair or crib; I couldn’t lift them into their car seats; I couldn’t pick them up off the sidewalk when they fell down; I couldn’t even let them play monkey on my legs.

The second that changed, I couldn’t wait to get them both into my arms… and it was worth the wait! I went straight to their school after the appointment, and nearly ran through the hallways to their classrooms. I scooped my oldest up first; as I did, I said “guess what?” His brown eyes widened, “you’re holding me!” Although their friends at school probably thought I’d lost my mind as I cried and held each of them, it was one of those moments I will never forget… and never take for granted again.

The most important thing I ask myself when I make medical decisions is “will this allow me to continue to put my arms around the people I love, and tell them that I love them?” When the answer is yes, I consider it a viable option. That was exactly why I had decided to have the surgery to begin with; it was the only thing that allowed me to continue making memories with my family.

For that same reason, we had decided to move forward with genetic testing for myself and our boys. If they did share my diagnosis, we needed to be proactive in their care.

Six weeks after surgery, our geneticist confirmed my gene mutation as spontaneous. She said only 7% of my cells were affected. Seven percent. Isn’t it amazing how much damage a mere seven percent can do!?

She had described my condition as “unlikely,” “like getting hit by lightening.” She said “no one knows why this happens,” and “it can happen to anyone.” She also confirmed that each of our children had a 50% chance of having NF2 too. If they inherited it from me, it would mean that 100% of their cells would be affected; their condition would be worse than mine. 

Every single night since being diagnosed, I had prayed over each of our boys as they slept. As we learned more about the monstrosities of NF2, I became more fearful and prayed harder and harder.

“Please, God, don’t let my children have to endure these hardships. They’re just babies. I want nothing more than to protect them. All I’ve ever wanted is to take the sick away from them. I would gladly have a thousand surgeries and tumors if it means they don’t have to have one. Let me do this for them. Let it just be me. Show us your miracles; they deserve it.”

Finally, ten weeks after surgery, my cell phone finally rang with the news we had anxiously been waiting so long for. Our geneticist blurted out, “they both tested negative for NF2!!

Relief flooded every cell of my body, and started pouring out of my eyes. I was so emotional that I couldn’t drive, and had to pull over.

The first thing I did was call my husband, Josh. Whenever I call during the middle of the day, he answers the phone with “Hey babe, are you okay?” I knew he would hear my tears, so I quickly shouted “they don’t have it! They don’t have NF2!!” I must have said it ten times before he understood me. I could hear the news sink in over the phone, and he began to tear up and smile as well.

Finally, we had some uplifting news to share with our support system! I happily began calling everyone we knew. Each time I said “they don’t have it,” I was filled with more hope.


It was a huge turning point for me; my whole perspective had shifted. Right in the middle of hardship, we had been given 2 perfect little miracles. It filled me with the courage I needed to continue fighting my battles.

There were more tough days ahead, but now I had all the fuel I needed to overcome.

This is my story, and it is not over yet.



Saturday 6 July 2019

A Guest Blog with VHL - Diary of a Genetic Defect

I recently found a blog by Chloe, a mother who had two hemangioblastoma's in her cerebellum and the subsequent surgery to remove them. She unfortunately also has the genetic condition VHL,which means she is liable to more tumours throughout her body and needs frequent monitoring.
Many of her posts resonate strongly, those feelings that only someone who has survived similar can understand... 

With her permission I have copied a post from her blog:

An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.

Saturday, November 28, 2015

getting better

Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair looks rubbish.

I have to be careful on days like today because I know they can lead me down a dark path. I am strong, I can overcome this all, I can get used to almost anything, I am strong.

But allow me to indulge myself, what if I'm not? What if  I won't ever be the person I was before, experiences do change you and this felt big, this has changed me. I don't feel like I'm ever going to get better, so much feels like my body doesn't belong to me and it doesn't know how to come back. I feel quite lost in my fear of not gaining back control.


feeling sick

no appetite


balance off

arm tingly (left)

eye feel odd

general weakness


and yet so much better than before the op, they where hellish days, each day more unbearable than the last, I couldn't even feel bored because the unpleasantness of it all so so extreme.

Count your blessings...

I'm trying to.