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.


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.



💖 




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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:


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.

headache
feeling sick
no appetite
wobbly
balance off
arm tingly (left)
eye feel odd
general weakness
shaking

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.








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Saturday, 29 June 2019

My interview with Aunty M Brain Tumours

Six months ago I had an interview with Aunty M Brain Tumours. 😊 Claire Bullimore, a brain tumor survivor in the U.K. interviewed me for her Brain Tumour stories.

Claire is a brain tumor support advocate, blogger, author, speaker, and social media guru, and also , like me, wanting to raise awareness of Brain Tumours.

Please take a look at her supportive information for others with Brain Tumours, read her story and like her Facebook page here.

I am sharing her info below:


Mother of 4 was Diagnosed with a Hemangioblastoma

 

Mother of 4 was Diagnosed with a Hemangioblastoma

 

Jo Barlow mother of 4 was diagnosed with a Hemangioblastoma in 2016.

After being given the frightening diagnosis that she had a Hemangioblastoma. Thankfully, after successful brain surgery, Jo is brain tumour free and there is no sign of reoccurrence.

But, that was not the end of her troubles. Jo was left with many side effects.

She decided to write her experience through a blog to share her journey with the ups and lows.

Here is Jo’s story

 

When were you diagnosed?

22nd April 2016

How did you find out about your diagnosis?

After giving up with various appointments with the GP and only finally being referred to a neurologist on the 3rd time of asking, the neurology appointment came through for over a month’s time. After a week or so of waiting and I was getting worse by the day, sat on the sofa unable to walk or move far, my husband called my parents who agreed to pay for me to see a private Dr as it seemed the NHS was not able to see me faster. Two minutes in the room with this consultant rheumatologist  (we thought it was possibly damaged in my neck as it started with neck pains and couldn’t turn my head etc) and him seeing me walk he suggested I needed an MRI due to a rare problem with the brain as I ‘was drunk when not drunk’. I had a private MRI 2 days later, came home and had lunch and got called back to see the doctor an hour or so later…I knew it wasn’t going to be good news!
I was sat down and I saw on his computer screen this large white lump on my MRI picture, clearly a tumour in my brain. I was told then the neuroradiologist was 99% sure it was a benign hemangioblastoma and could be removed with surgery…

What were your symptoms?

  • Feeling dizzy, losing balance, walking into objects (or thinking I will) feeling like I was walking on a boat (looking drunk when sober!)
  • Legs feeling wobbly and weak
  • Neck pain- sharp shooting pains. Head pounding at the base of the skull. Hurting when I turned around too fast.
  • Headaches gradually increasing, including them waking me at night (especially if I laid on my front or tipped my head up)
  • Increased head pain and dizziness when I coughed or strained
  • Tingling/numbness in my head and neck
  • Squinting to focus straight, vision jolting
  • Clumsy

 

‘It’s all in my head they said’

 

How are you doing now?

I had a tumour removed less than a month later on 18th May 2016.
It’s been an interesting journey, my tumour is supposedly all out and fine, and I am not seen as having any further issues by my neurosurgeon. But I still have daily struggles – fatigue, feeling unbalanced, being uncoordinated, vision issues, a numb head, head pains and soreness, neck tightness, being able to say what I want- certainly I am not able to respond as quickly, speech issues when tired, memory, not being able to multitask now, brain fog- all made worse when I am tired. But I fully appreciate it could well have been a lot worse. It’s made me appreciate life more.

What motivates you?

Knowing I have and am still helping others, with my book, blog and facebook group


Brain Tumour Story about Jo Barlow

 

 

What is the toughest challenge survivors face?

Navigating medical beliefs, especially those that are not right for you and doing anything alternative – where you are just ridiculed.
Knowing that when people think you look OK on the outside they assume the inside must be OK too…
Overcoming the frustration … of needing sleep, not being able to say what you think, not being able to do things the same as before, of having to change so many plans.

What is next on your agenda?

Hopefully, reach more people and help them go through similar without so much fear, pain and anger. Showing honesty and not pretence.


You can connect with me on my Facebook Page and join my Facebook Group which is a group that is only for those with hemangioblastoma’s (or family)

 

 

My 12 yr old son is home educated, so I am always at home with him, but when I feel able to I have been updating my website and blog. Occasionally I do some art (now very much more abstract!) and also help my husband with his bands’.
I didn’t have a job to ‘go back to’, and I don’t think it would be easy to be employed knowing I have issues with so many things and they can vary by day, I never know what I will wake up to
.

Who is your personal hero or are your heroes?

Anita Moorjani – as her work got me through my craniotomy.
My neurosurgeon Timothy Jones – for the very same reason!

What would you say is the most interesting thing you’ve ever done?

I wrote a book and published it myself just 16 months after brain surgery!

My book is: ‘It’s all in my head’ 

available on Amazon – Check on Amazon
 

Any advice for people or loved ones that get daunting diagnoses?       

You can always choose how to respond- it can totally change how you view the situation. If you will remember it as a nightmare, or a challenge.
Take time to listen to what ‘you’ want and not just go with what others suggest or fear based panic.
Look at alternatives.
For loved ones – just hold the person when they need it-  and listen, help them find the answers they need.


Tell us something about yourself that people probably didn’t know… anything?

That I go to gigs almost every weekend. My husband plays the guitar and my son bass – in the same band!
It’s a good test to practice how I can always choose my feelings – I can find it too loud, irritating, panic and I cannot cope or I can sit back, relax, trust and enjoy the music

Conclusion

I am so grateful to Jo for sharing her story and I give a high-five for writing her story for others to benefit from. It is not easy to write a book which is so personal to a person and be so vulnerable to showing the good and the bad.




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Wednesday, 26 June 2019

What Do I Wish my Friends and Family Understood about the After Effects of Brain Surgery?

1. That my thought process takes longer. To process thoughts, to say things. 3 years later and I can still be talking to someone and only understand something they said fully a few seconds or minutes later!  (This is without my surgery touching near any of the speech areas of the brain.)

2. I cannot always instantly say a correct response. e.g. someone might say ‘Hello’ as they pass me as I walk the dog, yet I reply ‘Yes’


Life after a Brain Tumour... www.JoBarlow.co.uk / www.BenignBrainTumour.blogspot.com / www.facebook.com/benignbraintumour


3. I randomly say wrong words. Often it is of something I am looking at, or a similar item (such as a washing machine and dishwasher) but sometimes it is fully random, and awkward!

4. My issues are not just ‘normal’ aging. Please do not say it is. I don’t know any other 45 year olds who struggle as I do, saying incorrect words or phrases more than their parents!

5. My memory struggles at times. I often only recall having read something previously a few minutes into reading it again, sometimes I forget entirely. I have a really hard time remembering things from around the time of my surgery.

6. When I am tired, all my side effects worsen, I start to wobble again, feel uncoordinated, say the wrong words, not be able to find words, feel blank or just cry from exhaustion. I struggle with the frustration alone, and at the back of my mind there is always the worry that things are getting worse again...


Life after a Brain Tumour... www.JoBarlow.co.uk / www.BenignBrainTumour.blogspot.com / www.facebook.com/benignbraintumour


7. I worry about head pains (of which there are many) and like many others who have survived a Brain Tumour also have health anxiety. As already I have had experience with being severely ill and Dr’s telling me I was fine and imagining it…

8. The fatigue can be insane when I am tired. I had fatigue before when it felt like my body was exhausted, this is different - it feels like your brain has forgotten how to work as well. Sleep is the only option at this point.

9. That I know I keep going on about the symptoms and side effects, as they often feel constant and wrong. It’s hard to ignore them. (I wrote about the side effects here and here)

10. I need reminding and reassuring these side effects are OK. Yes, I often forget I have had this same pain every so often since surgery. I have to think back and remember a specific incident that I had several months earlier. E.g. I remember thinking the same last summer when I walked the dog when it was hot, or at the beach I went to 2 years ago. Please help me by reminding me of actual incidents and not just saying 'You're fine'.
                                                                           
11. I cannot deal with conflict or too many emotions. If family are arguing, then I just switch off. Same as I cannot think clearly if shocked or surprised by something. I literally feel blank. And cry!

12. I cannot manage too much stimulation, be it from lights, noise, movement or stresses. With this I often cannot keep talking on top as it’s the final amount to cause overload. I am not being grumpy.

13. I often crave peace. To listen to birds singing or waves crashing…and nothing else!

14. Also, people talking are worse than, even loud, music. A song is somehow one sound in my head, each voice a single thing, so a room full of people talking feels like overload and my head cannot cope any longer.


Life after a Brain Tumour... www.JoBarlow.co.uk / www.BenignBrainTumour.blogspot.com / www.facebook.com/benignbraintumour


15. Some days are easier than others. Some I can get to a gig and be listening to loud music all evening. The next I can’t stand being in a small room of people or hearing a child screaming next door.

16. Too much of anything almost always leads to a day of fatigue after. I am not just being lazy.

17. I find it hard when I get tired as I can go from tired to exhausted far too quickly. Waking takes me far too long, It's almost always like I have been woken from a deep sleep.


Life after a Brain Tumour... www.JoBarlow.co.uk / www.BenignBrainTumour.blogspot.com / www.facebook.com/benignbraintumour

18. I still struggle with my spacial awareness and movement. It is worse when I am tired, but even walking with other people going in the other direction towards me can be hard. I don’t feel I can move out the way quickly and that I walk wobbly when I do.

19. I often feel that I am wobbly and slightly dizzy. But it's inside and no one else can see.




20. I cannot multi task. I cannot cook dinner and talk, or do any task and do something else. It just doesn't happen any more.

21. My eyes have never been right since before surgery. I struggle to read books- something I used to love. I don't know if the tumour or the surgery caused issues or not, (according to the optometrists my eyes work fine 😑) but it's another feeling that I am not the same as 'before'.

22. Likewise with my hand control, my fingers curl and my hand is weak. I struggle to do some basic tasks, let alone the more complicated ones. It has stopped me doing hobbies I used to enjoy.

23. I get frustrated with dropping things, my clumsiness, my spelling, my typing, my speech, my constantly getting things wrong. Please don't belittle me by saying they don't matter. They do. They are frustrating!

Life after a Brain Tumour... www.JoBarlow.co.uk / www.BenignBrainTumour.blogspot.com / www.facebook.com/benignbraintumour


24. I am still getting over the shock of surgery. My skull being opened. I read something a while ago about brain injury causing an injured spirit and it hit me so much I just cried with reality. My soul still needs to take time to heal.

Life after a Brain Tumour... www.JoBarlow.co.uk / www.BenignBrainTumour.blogspot.com / www.facebook.com/benignbraintumour


25. I have not fully accepted that the 'old me' has changed, and am still getting used to the 'new me'. I try and focus on the positive aspects and all the lessons it has taught me and part of me is certainly happier with the new version. But sometimes I just wish I could have some of the old parts back too...









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Wednesday, 19 June 2019

When things are too much…


Today I should have had my online shopping order arrive. I made sure I had enough in my account by 10am, I had set myself a reminder to sort out a payment. (This can be quite a challenge, as I often ask and forget to check if it has been done.) I had received a conformation email to say they were delivering it at 2-3pm.

At 3.10 I realised it was not here, so checked my bank account to find the money had not been taken. Yet on my Sainsbury's account it still said the items were due for delivery. So I called them. To find out they had tried to process the order early this morning, yet when it didn’t go through they didn’t bother to try payment again, nor to call me to see if I wanted to pay by a different card etc as is their policy.

So I had no shopping.😟

Then the rather unhelpful customer service agent told me I would have to change it online myself to rearrange delivery (‘Just order it all again’) as they could not do it for me. (Which they have done once before when I messed up a payment.)

At this point I am getting more and more frustrated so much so that in the end I can barely say a normal sentence without making a mistake or saying the wrong word. 

I can hear the person on the phone thinking ‘It’s a ranting nutter’ and not caring or even listening as he just stopped being helpful.

In the end after asking "Should calling me be their policy if the card is declined rather than just cancelling the order?" – Yes – "Then why didn’t they do it?" And him not even being interested or saying he would try and find out what happened and stop it happening again. He didn’t care that I had no shopping, some of which I really needed as had totally run out.

So I told him it was fucking crap customer service, I know I messed up the payment, but they are supposed to contact me to let me know. To which he said he would have to end the call as I swore, and I beat him to ending the call with an ‘Oh fuck off then!’

I cannot cope with people who are supposed to help, 
being unhelpful and blank on the phone. 
Not even trying to understand. 
I can feel the judgement in their voices and lack of caring - and they are in customer services!


I wonder if they know I was not drunk and irate (as they possibly assumed) but instead overwhelmed, stressed and angry?

When I can’t cope, I can’t speak properly, 
I say the wrong words, I slur, I swear


I cannot see the difference between saying ‘It’s really ridiculous’ and ‘It’s fucking ridiculous’ as to me its just a different adverb! Not helping I don’t even know I am swearing when I am overwhelmed.

I am so angry and frustrated that I cannot explain myself. Once again, I feel I should have introduced myself saying:

“Hi, I’m Jo,
 I survived brain surgery, 
so please excuse my speech and don’t judge…”


I then posted on Sainsbury's Facebook page asking why they no longer call? - as is their policy. Yet within a few minutes I had some really rude comments saying it was totally my fault, I should only place an order after pay day etc. Pay day! 😬 Like its as simple as that!! 😂

I wish I got paid enough to not need to order shopping on the day when I can get it delivered for free, nor as close to my budget as possible, so I don't always have to choose what is priority within this limit. That people paid my husband on time...

I did reply on one online comment saying:

"Please do not comment if you don’t know the circumstances"

Yet still got ridiculed in further comments, as well as laughing emoji's. 😢


How do they know if I am not able to remember to get the money in my account in time? Had them change what items are available from what I ordered so the cost is more than I planned for? Or many other reasons why people sometimes struggle with payment..?

After about 10 minutes I had so many rude ridiculing comments that I deleted the thread. Disgusted with how uncaring people can be.


I spent the rest of the day and evening in floods of tears as I felt everyone’s hate at my ‘stupidity', not a single person caring why.

Once again struggling with WHY I got a brain tumour. 
How it has affected my memory and being able to deal with basic things, and also the fact that it robbed us of finances.


And barely anyone understands, or even cares.

Would it help if they did though? With some people I doubt it…









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