A little poem to so many…

It hurts to watch you drinking

Addicted to the lie

That happiness is within a bottle

And you need it to survive

As only when you watch others

And truly understand

That they are just covering their insecurity

And it’s part of the grand plan

To shut us up, to weaken us

To stop us to believe

That we are capable of so much more

When our minds are truly free

So they dumb us down with alcohol

Make it a way ‘to chill’

But in reality it’s like our masters

Might as well give us a little pill

But pills we wouldn’t accept

Being forced to take a drug

So they convince us we have the choice

And treat us like a mug

‘Alcohol is normal’

‘De-stress from the trials of your day’

Just drown away the problem

…But it won’t go away

Sober up and wake up

Realise your life is a lie

You can only address the issues

When you feel ‘all’ of what’s inside

A drugged population won’t care

If they are being herded in a pen

As after all they are having fun

And everything’s fine then!

Then one day you wake up

Realise your control’s been taken away

Along with your inner guidance

In those drunken hazy days

Feel the pain, feel the hurt

The openness inside

Of being fully present

Your soul wants to cry

Yet in the pain you find the joy

A knowing peace inside

That extra understanding

When you fully feel alive

So please ditch the alcohol

Stop drugging what you do

I want us both to be fully here

Alive and healthy with you 

Gadolinium

I have avoided toxins for years. I don’t drink, I don’t smoke, I avoid processed foods, refuse mercury fillings, don’t have fluoride in toothpaste, I don’t take conventional pharmaceutical drugs, I am an ex-vaxer…

Yet before I knew a brain tumour was causing my health problems I was told I needed an MRI to find out if I had a rare problem in my brain, or possibly a problem in my spine- and they wanted to use dye for it.

The normal me would have point blank refused it, I knew gadolinium was a heavy metal, and I don’t have injections, but I had been reassured a few times by the doctor, reception staff and then radiographers that the dye was perfectly safe in most people (unless I had any kidney issues) and they didn’t want to have to get me back to pay for another scan with dye as they couldn’t see in one without it. Plus my parents were paying for the scan, so if the one without dye didn’t work and show what it needed to… I couldn’t ask them for another.

In the two days I waited from the private doctor’s appointment to the scan date I wanted to look up the risks online, but I could barely look at a computer screen, much less take any information in as the dizziness was so severe looking at the screen made my head spin even more. 

I was ill, I knew it.

So in the end I trusted that I had to go with what I was told. 

I HAD to find out what was wrong with me, and to do that with certainty it seemed I needed the dye. So the day of the MRI I asked them could they try and do the scan without and only offer the dye to me if they felt they needed clarity, which they said they would. Plus the dye cost more money… so I felt I had a ‘valid excuse’ for refusing it!

But after what seemed like 20 minutes or so of lying there in the scanner, with my eyes shut to stop me constantly spinning, they slid me back out and said they wanted to put the dye in. 

I just had to trust.

I still trust that having the dye helped them see more clearly that my tumour was a benign hemangioblastoma, so that when I got told I had a brain tumour I knew at the same time it was ‘one of the better tumours’ from the start. I might be wrong and the radiographers would have realised without it, but it feels better thinking there was a reason which helped me.

⟷

Roll on surgery and a 6 month follow up MRI, and this time I know I don’t want the gadolinium. I cannot see how injecting a toxic heavy metal in my body will help me now. 

I ask the radiographer as I walked in the room before my scan if they wanted me to have it –Yes. So I tell her I don’t want it. She rather bluntly tells me I ‘need’ it – "after all I had a brain tumour and they can see any remaining or re-growing tumour better with the dye". 

I reply telling her: 

“If it’s so small they cannot see it without the dye then I don’t want to know anyway”. 

She walks away muttering that as long as I know the risks then it’s my choice.

⟷

When I finally saw my neurosurgeon and he showed me the after surgery scan pictures I asked did I need the dye in the future, and he said:

“No, we can see all we need without it, the dye just made it clearer.”

Now obviously this may not apply to all types of tumour, (Hemangioblastoma’s are made up of blood vessels and are quite different to many) but for me it meant I didn’t need any more gadolinium!

It never felt right to be injected with a toxic heavy metal without a good reason (a build up must cause some problems in the body?) and I have since found more articles on the dangers of gadolinium

https://fixyourgut.com/gadolinium-when-a-harmless-mri-can-rob-you-of-your-health/
 

https://medinsight.org/mri-contrast-gadolinium/

https://gadoliniumtoxicity.com/

https://www.wsj.com/articles/a-question-for-anyone-getting-an-mri-1505751710

So with my follow up scan’s in the future, unless the benefits outweigh the risks then I am not having any more dye in them.

Also, after surgery most days I had been taking the Medical Medium Heavy Metal Detox Smoothie to help me detox, and I still have many of these ingredients several times a week now. I know he states that having all these ingredients together increase the strength of it being able to remove the heavy metals from the body, and I know I feel better when I take it! 

I don’t know for sure if it helps, but I do gradually feel the brain fog is lifting.

I have edited this post in November 2018 as I am continuing to see risks of Gadolinium and people saying they have side effects from it. I also seems a few Neurosurgeons are happy they can look at scans without it (especially if they are quite frequent), but the radiologists often still insist it is necessary! 

Another case where you have to insist it is YOUR right to chose.

I have listed a few more links where you can get information so you can discuss it with your health care providers as to what the risks are in your case for saying yes or no.

The official stance is this:
www.gov.uk/drug-safety-update
www.ema.europa.eu/medicines/human/referrals/gadolinium
www.fda.gov/Drugs/DrugSafety

Imaging Technology News  www.itnonline.com/article/debate-over-gadolinium

But, in my opinion, it is also worth reading the information from the companies that are helping with claims against gadolinium side effects- after all these sites are where patients are listened to when they have concerns!

www.thejusticelawyer.com/gadolinium-lawsuit
www.drugwatch.com/gadolinium/


 

Scanxiety

I have just had a load of tests due to the fact I have been getting lots of palpitations recently. The GP asked if I was under stress- as it is known to trigger them- and yes I guess several things are stressful to me right now.

Then a little while later I was explaining to someone when they started and I realised they began shortly after the time I thought my follow up MRI scan was due last November. I have been getting gradually more stressed since then while trying to ignore it and tell myself all is OK.

I had been told after my surgery that I would be getting follow up scans at 6 months (which I did in November 2016), then one after a year, and then 2 yearly after that. 

If I have several of these stable scans they then may stop them. So in my head I thought I would be getting a scan in November 2017- a year after the previous one.

But I didn’t. 

In December I emailed my neurosurgeon, and he said the genetics team would be doing my follow up (due to hemangioblastoma’s being linked to the genetic disease VHL -Von Hippel–Lindau). 

In January I emailed the genetics team. No reply. 

In February I emailed another person who is in the genetics team (and had previously contacted me about them testing the tumour tissue for the VHL gene), and she called me back saying there was an issue with deciding who should do the follow up MRI, but whatever they were now meeting to sort the problem out and a scan would now be booked!

So I now have a scan date of 4th April. (Which will be 6 weeks short of 2 years after surgery.)

Most of me is OK. If I am calm and relaxed and listening to my body I am sure the tumour is gone. Logic also says that I was told by the surgeon that he removed all of it successfully and there was nothing showing on the 6 month scan, so it is unlikely to grow back. Apparently they can regrow about 20% of the time, but normally only if they were not able to be fully removed or you have VHL- but neither apply.

Yet tests now seem terrifying! 


I was constantly reassured once before that I was OK, ‘I just had dizziness and that’s nothing to worry about,’ and everyone all but implied that my symptoms were due to anxiety! But I knew something big was up. 

I even had agreed to the gadolinium dye with the private MRI as I knew I needed them to find the problem and so felt I probably had to have it. (I hope that the gadolinium helped them realise the tumour was a hemangioblastoma from the start?) Agreeing to be injected with a toxic heavy metal is rather unlike me…but I think I knew I was dying as I was… (see my info on Gadolinium in this post)

But despite the reassurances, the worst still happened. 

The thought of that day when my world went a little numb and I just saw this huge white lump in my brain on the computer screen still makes me rather emotional. 

There WAS something wrong and I knew it, but ‘oh fuck it’s a brain tumour’. 

I still have tears of relief that its now over.

Part of me thought I was having a scan last November, and since then gradually the ‘what if’ thoughts have been building up. Causing me extra stress and palpitations with it. Part of me has felt like it is on ‘pause’, not daring to think about it, trying not to worry and yet failing. 

Every wobble of bad balance, every wrong word said and every head pain starts to make me worry its coming back, and it isn’t just the after effects of brain surgery. 

If I get ringing in my ears, even if just for a few seconds and nowhere near as loud, I start to feel physically sick inside.

If it happened once than why can’t it happen again? I finally feel I am getting my strength and even ‘me’ back from after surgery- I don’t want it taken again. Even though I know my attitude and beliefs have changed and I am doing things to actively look after my health. It feels like I am still healing from my brain surgery now, and its 22 months later! I still feel massive improvements every month or so in many different areas.

I also feel that now I have acknowledged what my fear is, I can address it. Release it rather than keeping it bottled up inside affecting me until I listen… and at the moment the palpitations have reduced!

So today I get one of my angel card packs (image below) and choose one card ‘Ground Yourself’. It feels totally accurate, as if I am relaxed and fully in my body I am OK about it all. It’s only when I go into my head and start to imagine and worry that the fears materialise. 
The card says: 

“this card is a signal that your energy and attention need to be grounded.”

Plus a card almost falls out of the deck as I am shuffling ‘Law of Attraction’. 
Which says:

“You have the power to choose your thoughts and align them with love, peace and harmony”

and then another:

“Think about your desires and avoid worrying or complaining”

Ummm… that spoke the truth then! So that’s it. I am now looking forwards to a perfect scan where my surgeon says the area has healed amazingly.

💕

 

Hands and Tears

I am really struggling after this weekend. Trying to cope with the feeling that even my family don’t understand my ‘problems’ anymore. Or if they ever did? Or if I am just too sensitive? Maybe my weaknesses reflect their own worries and they are too afraid to acknowledge them?

Whatever…these last few days have sucked.

It started on Friday when I realised that my ring finger on my right hand doesn’t easily straighten anymore, it looks curled when I turn my hands upside down. I know I have had issues with my hands since surgery (especially when holding and turning things, such as keys in the door) but when I looked at it I realised that the finger looks like it is losing muscle mass at the base and wasting.

In some ways it doesn’t surprise me as my hands haven’t felt fully in control for a long time, yet it is also pretty depressing. 

I am not yet 44. I’ve had a brain tumour, I am less fit and energetic than some people 20 years older than me. 

Or as my son innocently pointed out- his Nan (my mother) walks further and does more than me every day- and she is 70 this year. I feel like I have lost many mental abilities and now my hands look like they are seizing up…

Then Dave had a gig on Saturday evening that we knew would be a late finish, so I make sure I have a lie in on Saturday morning. I didn’t even wake until 10.30, didn’t get up and eat breakfast until just before 12, and had an easy day. At 4pm I went and played my relaxation music when using my Vitali-chi machine and fell asleep for a good 40 minutes – feeling totally relaxed. So woke with a bit more energy so I could go out later.

But then the band started playing. Oh shit they have flickering and flashing lights… and I could not cope. The whole experience I have written down in my previous blog post.

I didn’t get into bed until 2.42 that night, I needed 2 hot packs as I was shaking from the cold and the stress of it all.

I don’t know if I am more angry, (What would the pub have done if someone had photosensitive epilepsy? Would they have turned then off or risked letting them have a fit?), upset (That yet another side effects conditions my life), cold (from sitting by the door and ten outside for so long), stressed (from being scared I might have a fit) or just emotional to it all. 

Whatever it is I cry myself to sleep, my eyes still seeing flashes.

Again I wake at about 10.30, still feeling totally shattered and so didn’t move fast, had a shower with my legs feeling like lead. Took the dog for his walk, still with my body feeling extremely heavy, and just sat on the sofa feeling blank. By about 2pm I realise that I just need to go back to sleep, so again I put on my Vitali-chi and listen to my meditation music for another hour- well, if you call it listening when I am totally asleep! After that time I keep thinking I should get up, but I cannot seem to be able to even open my eyes, they still flash when I open them, so in the end I am there for well over 2 hours.

Despite this later on Dave tells me I am grumpy and need to go to bed early- as though going to sleep will stop all my emotions? Yes I’m tired, but I don’t want to fucking sleep my life away… I want to be able to have a late night and manage on 8 hours sleep like everyone else, and not feel by doing so the following 48 hours are a right off.

It’s hard when you feel no one understands. 
It’s even harder when you cannot find the correct words to explain your frustrations easily.

Sunday evening we decided to go out for a while, but then totally stupidly (as I didn’t listen to myself and my constant yawning) we ended up staying out until really late. I had said I wanted to go home, Dave didn’t want to and I didn’t insist we did. I felt shattered.

Monday was all but a sleepy waste too. It’s annoying when you try and help your 11 year old and you cannot remember how to spell simple words and you need to look up how to do the maths questions.

Then end up telling him the answers as your brain says what it is thinking and not what you want to say!

.. he is home educated but I feel like I must be the worst ‘teacher’ ever! I couldn’t take him out as I had planned as I just felt too worn out. I can’t even deal with his questions. I want to scream at him:

“Don’t you realise I have side effects from brain surgery? Do you know lucky you are that I am not severely disabled, or dead?”

Maybe part of the reason I feel worse is due to writing down and focusing on my side effects blog post recently? Maybe I just need to keep reminding myself what I can still do? What I could have lost? How much worse it could have been? What I am grateful for?

Still today I feel no one understands and I am a waste of space. 
I know much of it is my own judgement of myself and what I feel others think. 
But I can’t function. 
I’m in tears most of the day. 
My legs barely work. 
My brain even less. 
I just need to sleep. 
I need sleep and understanding mixed with a bit of love and support. 

Mostly for myself.

Eyes And Lights

I often go to pub/club gigs with Dave when he is playing guitar in his bands. I have been somewhere almost every week since a few weeks after my operation and never really had any problems, although sometime I cannot sit too close as the music feels too loud for my head.

Last night he was at a new venue and all seemed good; the pub seemed nice, there was a reasonable stage, a table and stools set up just to the side of the band - so I can see and be seen and won’t be in front on the speakers. All was OK until the band started playing.

They turned the main lights down, and turned the band ones on… and “Oh shit they have flickering and flashing lights…”

I am seeing that moving image like lots of joined together stills from old films. Like having a brain tumour. 

“Oh fuck, I’ve got to go. I feel I need to hold my hands out to balance myself and want to shut my eyes to stop it, but the lights still flash through my eyelids. I feel dizzy and slightly sick. I am terrified that I might have an epileptic fit or something as this feels so wrong. And my mind goes into overdrive with thoughts of my driving licence being removed again, the band having to stop if I don’t get out of here – as if I have a problem Dave will have to stop playing, how will we get home…”

I all but run to the bar and ask the staff if they can turn the flickering off on the lights (there were 4 strobe/flickering lights on each corner of this part of the bar, as well as a strip of slow colour changing lights aimed at the band) “No- they ‘have’ to have the lights on when bands are playing and they have no way to change them.” … oh OK!

So I blindingly walk to the other end of the pub, away from the lights (and the band) to sit down, and try to calm down from the fear and anger rising inside. I sit alone at the bar with my glass of water for a few minutes. A disabled man in a wheelchair asks me could I please move my barstool over a bit so he can get to the bar. I move over and realise he is not being seen, so get the bar staff’s attention as they didn’t see him. He thanks me and offers to buy me a drink. “No, its fine thank you, I am only drinking tap water and it’s free! He is being polite, but I don’t really feel like sitting alone in a pub for the next 2 hours…

I sit here trying to understand it and think what I can do… I have been to gigs almost each week since I had surgery. Only one club had lights that the audience couldn’t get away from, but when I asked the sound engineer could they turn the strobe lights off as I’d just had brain surgery, he did so instantly!  

This was at a small club in Brixton, yet this is a big pub, part of a big chain and they cannot help! What would they do if someone had epilepsy? Would they have to go home? I don’t want to complain any more as I don’t want the band not to get paid or cause them problems because of me, but I am so disgusted with it. I wonder could I get sunglasses from the car, but Dave parked the car by himself after we had unloaded while I waited in the pub, and so I have no idea even where it is, and he is playing so I can’t ask him, plus he has the keys –at the front within the flashing lights! 

Then as more people come into the pub I realise being by the bar is not a good spot as it’s too busy and I am just getting people pushing into me, and I don’t like people being near the back of my head- plus I can’t even see the band. So I move the bar stool to another tabled area, nearer the door.

It’s cold sitting here, my coat is up the front of the pub in the flickering lights so I can’t get it.

 I start to shake, partly with cold, partly as I feel a little vulnerable sitting here alone. 

At this point a rather tall man offers to buy me a drink- with no strings attached! Again I say no thanks, the water is free. But he keeps chatting, which is actually quite a lot better than sitting here by myself surrounded by drunk men. I tell him I am with the band, my husband is playing, but I cannot sit there as I cannot manage the flashing lights due to brain surgery. It is offloading my anger and fear onto someone else. I say I am worried I will have a fit if I stay near the lights- and if I do please let my husband know!

After 20 minutes or so, I am cold and also want to try and say to Dave that I am OK. (I had just disappeared when the lights started, pointing to my eyes and the lights) and as I walk back nearer I realise the flashing lights have stopped! 

I assume the bar staff must have asked the manager or something and he turned them off? But I still don’t want to go too close to the other lights as my eyes, head and balance all feel a little delicate, so I stay at the back of the band area leaning against a wall. 

After the first set I tell Dave where I am, the reason why and what the bar staff had said, and that I am somewhat relieved the flickering lights are off. I didn’t think to get my coat or keys as now the lights are off I can stay where I am.

Then as the second set starts, so do the bloody lights!  

Oh bollocks. I can’t deal with this again and end up at the back of the band area and lights, between a wall and the fruit machines, which means both sides are somewhat shielding the flashing from directly hitting my eyes. But even with this my eyes still ache, as does the back of my head and I feel like it’s draining my energy.

I chat to the same guy who was talking to me earlier, a couple standing next to me and one of Dave’s friends when he walks over, but I am so relieved when the band stop playing and hopefully these damn lights will stop. But they don’t! The music on the jukebox just keeps playing instead. 

After 10 minutes or so I tell Dave I need to go home, so he agrees he will start to pack up. He tells me to shield my eyes and try and sit next to the stage facing away from the lights. I manage a few minutes but I can’t take it. I am sitting here facing the wall, with my eyes all but shut and feeling in a drunken haze. I hate it. 

It’s like waking after brain surgery when you can’t open your eyes without spinning insanely.

I want to go home. I need to go home. Now.

I again try and ask the bar staff if they could turn the flashing lights off for 5 minutes while we pack up. No he can’t. I stay there and say “Please, I cannot see and I need to pack up and go home.” He opens the lighting box and turns the flicker speed down a little. It helps. Just. But by then my eyes and head have had enough. I walk out the side door and stand outside in the cold trying to get rid of the flickering in front of my eyes. I’m too exhausted to cry.

We get the car, and end up having to drive around half of Woking as there are road works and roads shut everywhere – with no sat nav working. I feel awful and it’s hard to concentrate. The traffic lights seem too bright and glary. 

Then they have traffic cones shutting the road we want to go down to collect the equipment. I just want to run the fucking things over- I’ve had enough now! But Dave gets out and moves one cone and I drive in, while he explains to the security staff there that we need to collect our things from the pub.  

So I now end up sitting outside the pub as he brings out the items, once again chilling out listening to Muse and trying to get my senses back to normal.

I didn’t get into bed until 2.42 that night, I needed 2 hot packs as I was shaking from the cold and the stress of it all.

I don’t know if I am more :

angry

What would the pub have done if someone had photosensitive epilepsy? Would they have turned the lights off or risked letting them have a fit?

upset 

That yet another side effect conditions my life), cold (from sitting by the door and then outside for so long

stressed 

From being scared I might have a fit while alone
or just

emotional 

to it all. 

Whatever it is I cry myself to sleep, my eyes still seeing flashes. 

That wasn’t a fun night…

 Edited to add:

After writing this I contacted the Facebook page of the pub chain and was told someone would contact me back after talking to the venue. Someone emailed me back apologising that the staff didn’t understand why I wanted the lights off, nor the fact that I only wanted the strobe lights off and not all of them. (um??) They added they will also be putting up a sign saying there are strobe lights on the front doors and that if I go back then I can request to the staff to turn the strobe lights off.

I hope this helps others in the future too x