Even Trees Wobble

Several days ago I saw a fundraising post online about someone who also had a Hemangioblastoma and the headline:

“Now, 10 years on, she feels it is as if the experience never happened.”

As well as her words:

“I feel like it’s as if it never happened. I feel the same as before I started to be unwell and I feel so very lucky to have survived a brain tumour”

And whilst I fully relate to the lucky part... I am nowhere near feeling the experience never happened.

Every day, several times a day, I am reminded about my tumour. With various pains from my head, tightness, pulling in my scalp, itching, my neck feeling tight, blurry eyes, foggy numbness of my right side of head and behind my right ear, feeling wobbly, doing something uncoordinated, feeling a bit spacey. Plus all the other daily and exhausting neuro-fatigue issues. The ones I am not ‘supposed’ to have.  

Plus its winter, which is never an easy time for me as everything feels it is shutting down, dark and cold. So when I am already struggling I start to overthink again … Will I always have these issues? Will I ever feel properly balanced again? Why is the hole at the front of my head aching more now? And why is it so wide? Why do I even have it? The gap between the sides of my skull bone I now feel are a fingers width! It's not even where my tumour was. Was I this bad last year? Am I getting worse? Will I recognise if I have signs of the tumour reoccurring again? Will it reoccur? Could I cope if I had to go through this all again? … my healing going back to the start ..?

I don’t want to walk the dog, I don’t want to walk alone, I feel wobbly. It reminds me of those months of feeling ill and everyone saying I was alright … trying not to panic several times a day as I wobbled, or did something that felt wrong and feeling like I was drunk or in another place. The fight or flight reflex constantly sending jumbled messages that my brain couldn’t cope with.

I feel the wobbliness is just inside me, a feeling I have - as no one else notices it. Or they are too polite to say? But then they didn’t notice until I was very ill before …

I try and think, have I really been better since surgery, or is it just the same type of reaction but I am struggling with dealing it today? And I remind myself that in the summer I went out many a time feeling wobbly and wondering if it was as I was too hot, last winter I had to keep the hood on my coat up as my head couldn’t cope with the cold wind. I remind myself of these posts I wrote about my surgery side effects. This one written in December last year saying I have been struggling for the last few weeks and this the following February. Not much has changed, I could have written them yesterday! 

 

In theory with my type of tumour it is out and gone, and it is unlikely it will come back, but if it does it's not much point me worrying about it. I knew last time it was more than just anxiety, I am sure I would know again. Plus there was nothing showing on any of my scans since surgery, the last one being only 6 months ago – I just have to question my logic. Where I have seen 1+1 = 3, but I haven’t stopped to check and count! To stop worrying and make the best of what I have. I will just have to hope that in 7.5 years I too will feel like its never happened 💜

So I walk the dog, fuck it if I am wobbly, it’s not that ‘brain spinning’ dizziness or the wobbly after surgery when the world constantly moved and I got travel sick from just looking at things. It’s just a day where I wobble, similar to many in the last 2 ½ years…

After I do a couple of laps of the park I feel I have lost much of the wobble, being able to walk when I don’t need to follow a ‘path’ is much easier than walking through people or along a narrow footpath. Then as we are about to leave the park I hold on to a tree there. I often sit on one of its low branches and ground myself connecting to the earth, but today its really wet and so I just lean on it instead. As I am leaning I think I can feel this branch move, swaying in the wind, or is it me moving inside again? I lean a bit more and with another gust it once again moves. This big tree with thick branches is moving in the wind, it's wobbling. Its top half sways, but it still has roots firmly in the soil. Grounded. Today just realising a tree does the same, its top half sways and yet it is grounded, is enough.

My 6 month fundraiser...

I want to do something special to celebrate my 3 year cranioversary (the anniversary of my craniotomy!) next year...

SO... for the next 6 months - from now until Saturday 18th May 2019

I am fundraising for both:

'The Brain Tumour Charity' and 

'St George's Hospital - Neuro Appeal'.

I am donating:
£1 from each of my paperback book sales to both of the above charities
50p to each for all Kindle e-book sales
plus...10% of any sales of original art on my website!

... PLEASE consider buying something!

I am also using it to motivate me into doing more art work again... from the 11th - 25th May 2019, I will be holding an art exhibition at Dittons Library, Thames Ditton - where again 10% of any sales will be for these two charities.

ALSO... right now for the next 7 days my Kindle e-book of 'It's all in my head' will be selling at half price, gradually increasing over the week back to its normal selling price. I will still donate £1 of any e-books sold in this time. (50p each towards the two charities)

Finally... I am planning a raffle for a 'music event' near the 18th May (not yet finalised), but if you have any donations or offers of events, free meals, treatments etc for prizes then I would be very grateful. There will also be fundraising tins for both charities so you can choose who you would rather donate to.

PLEASE SHARE & DONATE... Donations are starting now at https://uk.virginmoneygiving.com/JoBarlow

Dinner time chaos

 This was my status update on Facebook today:

"So who else with a 'normal' brain while cooking dinner manages to ... 

Chop their finger when cutting veg - so I need a plaster,
Drop a portion of veggies down the side of the cooker,
Drop the spoon in the white sauce,
Spill several of the potato wedges when shaking the tray ,
Drop 2 frozen chicken slices under the fridge (so they have to be binned),
Tip half a saucepan full of washing up water on myself and down the front of the cupboard...
That's it so far - dinner is another 15 mins or so!
Oh and earlier, for lunch, I managed to put a glass bowl with a clip on lid in the fridge, to then open the door and it get caught on a door shelf - so it dropped to the floor breaking the lid and the bottom of the fridge!"

Then added after we had eaten:

"And to top it... I forgot to add cheese to the lasagna!!! 🙄😵 I guess one advantage is it was totally dairy free (I cant tolerate too much dairy and so have almond milk, but normally put some cheese on as a topping!) 

And I wonder why I hate cooking dinner ... 🙄"

Honestly picking up an item and dropping it almost every time is exhausting... knowing I am also wasting food just makes me extra angry, fed up and tearful. I often peel a potato and drop it on the floor, drop the peeler and slice my nail (and sometimes my finger.)

I don't know if it is just tiredness, my hands (which although I have felt they are getting worse since my surgery and my finger is now curling - no one will link it to my surgery. I posted about my hand here), not being able to multitask and so cooking dinner - when I have to think about two or three items at once just overloads me, or what...  

Maybe it's just my hibernating season as it's getting cold and wintery. But it's bloody depressing!

 
I am grateful that I have been able to make dinner (albeit clumsily) for a few days in a row most weeks now and am not exhausted after or feeling wobbly from continuous turning as I cook, get food, bowls etc. But the constant messing up things isn't easy... someone suggested I film myself cooking. Maybe I should? Maybe people would really understand when they see what a struggle it is at times...

My daughter has also got a job locally and telling me what she does, so I was thinking what job could I actually do? 

On days like this I would be a danger to myself and others at many things!  

Not to mention I often cannot speak straight - especially if asked a question, have limited energy, cannot carry or hold things easily, and it takes me ages to do some simple things. 

I guess I am good at big picture, out of the box, thinking and ideas - Maybe someone would want me for that...

 ❓❓❓

And back it goes...

After saying I felt normal for two days, my body has decided to remind me it's not.😒 For the last few days my neck has felt awful, cramping neck muscles below the 'dent' in my neck (where the muscles have wasted), the left of my spine aching as I know I have not been sitting or laying straight from the neck pain, plus the skin around the whole of my scar (from my neck to my ear) is just tight and seemingly pulling at times.

Each time I move I can feel the skin tugging, and sometimes I can feel it even when I am still.

It was only recently when I stood behind a bald man tapping his head to the music at a gig that I realised just how much the skin and muscles on our heads move. As he moved his head I was watching how the various muscles and the back of the head and neck responded, and that often there was a ridge of muscles showing - no wonder my neck struggles at times with so much muscle wasted and much of one side of my head having been cut open.

Even if the surgeons did a perfect job, there will be scar tissue from cutting into it and the muscles, as well as the fact that as I cannot feel much of my head I probably now move and use it differently?

I have also had the 'I cant wake up yet' exhaustion. Even after 9, or more, hours sleep I just cannot open my eyes easily and have to force myself to look at something to keep me awake. Although I have recently been doing more chores than I had been, so I guess a energy backlash is expected.

I have to keep focusing on the fact that I am now generally able to do more each day than at any time since several months before surgery, so about three years in total - in itself a positive.

Plus ... my dog has been sniffing my neck again recently. 😟 I know this shouldn't concern me, but he sniffed it loads before I knew I had a tumour and then stopped once it was removed (see here) ... so it does concern me, maybe more than logic wants to admit.

I think he knows I am tired and aching and is just 'checking up on me'. Who knows? But I cannot imagine the comments if I ask to get my head checked again as the dog is concerned!! 😂
Tim Jones would finally think I have cracked - not that he thought I was far away before. 😜

For now I am watching him and trying not to get concerned as he doesn't look stressed in general (although he did have a few days when he looked upset- but it is firework season) and his skin is OK.


I am also glad I treated myself to some Reiki this week. An hour of bliss in an otherwise stressful achy tired week. It feels like my neck muscle has been slowly relaxing since.

Maybe I just need to do some art and forget about all else? But I know it isn't going to happen, as I'm far too tired for even basic daily chores. So I just have to keep on doing the best I can and hope I get some better days again soon.

There is one advantage of hitting the bottom, in that you know 

you come back up again.

Two 'normal' days

Yesterday and today I have actually felt quite 'normal'!

Two days in a row without either feeling I could fall asleep any minute, being unable to see close up clearly, that I need to sort out my head or neck pain, that I cannot concentrate or my clumsiness is driving me insane. 

The normal things I once took for granted.

I decided on Thursday that I was feeling fed up, bored and depressed with the seemingly constant chores with no enjoyment and that I really missed my 'chill out' in doing some art work. I have put off dong any art so many times as I am often so frustrated with what I now cannot do, but on Thursday I realised that even if I just 'played' and made textures with paint - it would do! If I could use any of the work or possibly sell it after then its a double bonus.

So yesterday I got up and put my painting clothes on, and just made a mess 😄 Yes there really is a mess of paint sploshed over the floor and I dropped each painting at least once, but I have also had fun just doing.

I had some small canvasses that I had tried to do some 3D designs on a couple of years ago and some more detailed ones that I started before my brain tumour that I have never been able to see, or coordinate myself well enough, to finish. So they got recovered in another few layers of paint. Many I then wrote various quotes on. They are not amazing art, no where near, but they are decent enough and also pretty meaningful to me - and I hope to others?

I also had a new canvas and I just layered it, enjoying the paint. I don't know what it is turning into yet, what the next layer is going to do to it.

...but I like how much you can totally change something so easily if you let go of what you have... 

A lesson for myself again?

Part of me still wants to try and do more detailed work again, yet a bigger part of me just needs to enjoy and do what I am for a while. I need the 'art chill out', get some confidence back and not be thinking how much I have changed, how much I am failing.

Somehow dropping paintbrushes, the canvas, kitchen roll is not as upsetting and frustrating as dropping a knife, not being able to peel veggies without dropping them or just struggling with a key!

Or maybe it just feels more productive? Something I don't feel very much of recently

Whatever, it distracted me from 'me' and that can only be a good thing. 💜

Chiari Anger

OMG! I was just looking at my notes to see if I knew what type of gadolinium I had with the private MRI - at the time when I found out I had the tumour. (The letter doesn't say and this topic is on another blog post here )

...but I re-read the letter from the neuroradiologist that I was given after the scan and it says

 "there is cerebellar swelling with protrusion through foramen magnum .." 

So I google it, to find out it's basically the same as Chiari malformation (although obviously my protrusion was caused by the tumour) ....  

"Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM)." 

see more at  www.sciencedirect.com/topics/neuroscience/cerebellar-tonsil
 

....so I am sitting here f'ing livid and even more annoyed with the health ombudsmen!!!😤😡

I had GIVEN my GP a letter with all my symptoms also saying I was concerned I had Chiari (as well as a Brain Tumour!) as my symptoms were so bad when I strained or coughed etc and I had found out this was linked to Chiari...

MY letter to my GP said this..

"Can I rule out?
Brain tumour or problem?
MS?
Chari malformation? neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected" 

(my full complaint letter is on this page)

So... I basically gave TWO doctors ALMOST ALL the symptoms of Chiari AS WELL as a f'ing cerebellar brain tumour (the only thing I had none of was vomiting) 
AND I had ALSO given the last GP these symptoms on paper to read after I had left surgery, so she knew what to refer me to the Neurologist for.

I had also asked two of the doctors I had seen in person (and again put on paper with the last doctor) if I had 'a brain tumour or Chiari'... both said "not likely" along with a sarcastic 'don't be stupid' smile ... but I f'ing did have a brain tumour AND Chiari!!!😡🤬😡🤬

Yet even with this this final GP having this information, she only referred me as NON URGENT to a neurologist... (of which the appointment would have been after my operation date if I had not had a private scan...)

... I am totally disgusted with the health service and ombudsmen today...

I will be calling them tomorrow to see WTF is happening, if anything... 

THEY CANNOT keep telling me the GPs didn't fail me... 

its f'ing lying to protect them if they do... 🤬🤬🤬

UPDATE after the call to the Health Ombudsman - 

Apparently they are still reviewing my case and right now the person dealing with it is away as having an operation, and they will be back next week. 🙄

They will be called again. 

Also I will be asking if my case has anything to do with why the final GP I saw is now "Registered without a licence to practise" on the GMC website??