Saturday, 22 February 2020

Questioning Scanxiety



I don't find winter an easy time of year, I certainly am no where near as active or productive as in the spring and summer, and cold winds still can make my head feel nerve pain or achy. Plus I really miss sunbathing and recouping my energy - my kids don't call me a tortoise for no reason! πŸ˜‚

For the last 2 years I also started getting dull headaches in the winter, starting from about December, (see Crying in the Rain) I remember getting odd sensations and scanxiety for the few months before my last MRI (in April 2018) then being relieved that it was fine. (see Scanxiety and SCAN RESULTS!)

Then again last year the same thing happened and I started with the dull headaches just before Christmas, but thankfully I reminded myself that this was seemingly an annual occurrence, and didn't get too stressed over not having a scan soon for reassurance.

The same has happened again this winter.

I don't know if it's purely as the cold weather triggers head pains, or if somehow my body has held the cellular memory of what happened?
...and so, as the major symptoms of my tumour started in December, my body kindly reminds me of it each year. πŸ€”

 ↔


I also know that I have another MRI due this year, around April or May time, and so I feel there is some tension and scanxiety brewing again..

Stress causes my head to tighten up, I can now easily feel it and the muscles right up my neck into my head, which then in turn causes my head to hurt.

I know my Neurosurgeon reminded me last year that 'head pains are not actually from the brain, as the brain has no pain sensors' ... but... I certainly had headaches when I had a brain tumour - and right over where the tumour was, plus after surgery I could clearly feel a buzzing 'in' my brain! πŸ€”

I have also realised that somewhere in my mind I have taken it that between 3-4 years is when a re-occurrence is likely to occur, if if does. So it feels this is an important scan to know what's happening. 

I fully realise it's not much point worrying about what could easily be fine, but I also know confirmation that all is OK will be very reassuring.

"Suddenly the head pains are just side effects of surgery again rather than the concern the tumour 'may be returning'..."



It feels like these follow up scans are an information and possible decision time, much like when you are pregnant and go to a ultrasound to confirm all looks OK with baby. It doesn't change anything about what's happening, but it helps you know that most things are probably OK and you can relax a little. Or possibly give you advance warning that there may be a concern that needs rechecking or an action taking.


There is so little information about hemangioblastoma's online, even less about those not linked to VHL disease, and really not much at all about the re-occurrence rate for sporadic tumours as mine was. 



Much of what I have read has changed within less than 4 years since my diagnosis, as has information on the cerebellum.

However it seems the general consensus is that up to 25% of sporadic hemangioblastoma's regrow. Whether that is because of the area in the brain and if wasn't all able to be removed first time without damaging something, I am not sure. πŸ€”

Even with my Facebook support group, of about 100 people who also had cerebellar hemangioblastoma's, I think only a couple had surgery very similar. The majority of  hemangioblastoma's are surrounded by a cyst - mine wasn't. (See here for the different types)

Most didn't get an extra hole in the skull at the front of their head for a external drain during surgery, and I don't think any others have a similar plastic plate in their skull. Some had 2 surgeries, one to embolise the blood vessels first, others a second for different reasons such as draining the cyst first. Many have cuts straight up their neck and so they didn't have their greater occipital nerve cut, nor half their head still being numb. Some were in hospital months after, and I think my leaving after 2 days is faster than all. 


There is such an obvious variation in types of surgery, let alone what we don't know about the actual operation in theatre, that this 25% re-occurrence could also drastically differ from the difference in how surgery is performed and the surgeon's knowledge. 

I simply don't think there are studies working out the best outcomes. I also doubt any surgeon is going to admit a better method has since been found, so us patients aren't going to know!



Definitely no studies have been done in how often follow up checks should be carried out, some have them every 6 months, many yearly - but others having none

How much does insurance and cost play a part into this recommendation? πŸ€” 

My scans being 6 months, 2 then 4 yearly so far; then if all is OK not for another 5 years, are very much being at the lower end of the scale. 

So ... From my observations on my group, if a tumour has reoccurred then it seems to be between 3-4 years after their first surgery. This may well include those with VHL, as many haven't been tested on first occurrence of their tumour, it may also include those whose surgeon didn't remove it all in the original operation, but hadn't made that clear. 


But I now have the belief that my scan will be important. 

It's 'the' most important one.




It was only on someone else in this group saying that they were due their first yearly follow up and how their surgeon had said this was the most important scan that I realised how much...

... our information can affect our thoughts and therefore our reality. 


They were nervous of this first scan, me of my next...


 ↔


Is it any different to birth and other Mums either telling you that 'You'll be begging for an epidural' or 'It's the most natural amazing experience of your life' and it changing your perception and fear completely?! 

(Sorry, I have 4 kids... I was told these, and mainly other fear based stories a lot!! πŸ™„As it was I had 4 births without drugs, and two home-births which very much showed me how much of a variety there can be, and much of it and the 'luck' is based on your fear, knowledge and accepting, or not, what is) 

But right now, I'm a bit like a pregnant mum awaiting her scan, not wanting to believe everything is alright until you get confirmation all is OK. Sort of ignoring the scan date and continuing with life until the day arrives. Not yet quite believing all is well and getting false hopes up...


You know it doesn't guarantee everything will be fine, but it certainly helps reassure you there is nothing major to worry about!



As I have said before ... One of the hardest things to deal with is that the after effects from my brain tumour are the same as the symptoms of it ...






All you can ultimately do is trust. πŸ’–





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Sunday, 16 February 2020

Life Lessons from a Dog Walk

This weekend has been stormy and raining heavily, so when I took our dog to the park today there were puddles everywhere.

Enzo was loving it, and kept running around each small puddle and dropping his ball into the water. Laying down next to it and watching. Then after a few seconds he picks it back up again and drops it back in the water.

I know from past experience at the sea or river that he often drops his ball and waits for the waves to take it away and wash it back to him, or the river to start to carry it downstream. He catches the ball again as it moves about a foot or so away.






So I believe he is waiting for this to happen and expects his ball to start to float away when he drops it into a puddle.

He is watching it in exactly the same way, picking it up and dropping it over and over, just it never moves.


His collie intelligence tells him water = the ball being washed away, yet if doesn't tell him that puddles are different to the sea, rivers or streams. πŸ€”






It's mistaken logic. Our belief shaping our reality. 




How many times do we do the same?




Clearly not with a ball in a puddle, but with life. How we think reality should be. How we have been shown or experienced something once before so we think that's still real now. And so we repeat something over and over as it 'should' make sense or react in this way.

How often do continue thinking the ball will float, when if we just sat in reality and watched it, we will soon realise the ball doesn't float when the water isn't moving. Or it only moves in certain locations.


Instead we just focus on how we think it should be...
even if reality is not following expectation.
πŸ€”



Even a simple experience such as walking the dog in the rain can be such a variety of experiences depending on our mood and thoughts.

Some days it's as much as I can do to drag myself round the park, I don't want to talk to anyone, have any other dogs near us to take his ball and anger me when I can't get it back. Other days I will laugh at the exact same experience of a dog stealing his ball and teasing him with it, trying to get him to play.

Some days I cry walking round there, feeling extremely sad, angry or anxious,

There are times I love the rain. Just Crying in the Rain & Releasing.

Other days it just feels like the rain will never stop. it's making me uncomfortable and wet. Longing for the sun. 

 Yet others I feel nothing but love and joy. The rain a blessing.


I've learnt to accept all the feelings, none are wrong or bad, they just are. 

Temporary.




Often if I just accept that moment and the tears or frustration with it, a lap of the park and a sit on my favourite tree branch helps me release my feelings and refocus. (See my previous blog post here)

Soaking in the knowledge I have felt much worse and things have got better again, have felt amazing joy, then struggled again after... yet the tree is still here.

Still grounded, knowing it will shoot leaves again soon and feel sun on its branches.


Not expecting anything else other than what is ...






.

Monday, 10 February 2020

Trauma, Anxiety & How Thoughts Can Change the Experience

It was only on reading something written by another person expressing their thoughts of when they were awaiting brain surgery that day and how their anxiety and heart rate went up, that I fully realised ... it wasn't just me.

I hadn't been weak, was just an anxious person, had a phobia, or was getting stressed for nothing... But was reacting in a way that others do, probably even the majority of people do, to a serious surgery where no one actually knows the outcome until after you wake. I was scared, terrified and my body was reacting as such.

Yet why don't we discuss this? 

Or the thousands of other events where you feel you will be judged if you actually dare be honest? 

Told to 'pull yourself together', 'man up', 'move on', 'be brave' or 'take a chill pill'.
Rather than someone just say... 

"Don't worry about feeling scared, 
it's perfectly normal considering the circumstances, 
I'll be here for you"
and to reassure you all is OK.

The nurse that held my hand in theatre until I was unconscious being one of these living angels. πŸ’œ




Is it any different to going to the doctor and them diagnosing you with depression or anxiety ...but not taking into account that you have just had a upsetting or traumatic experience recently?
One that you need to discuss and process before you can move on rather than just bottle up and ignore.

The thoughts in your head won't go away , no matter how many pills you take, bottles you drink or things you try to distract yourself with...

Yet society shames us for struggling.
 Admitting our truth. 


So we frequently don't mention we have anxiety, feel low, or are stuck in a hole not seeing the way out. Until it gets too much and we go to the doctor's to get 'diagnosed'. With a mental health 'problem'. Told that the body doesn't have the correct balance of chemicals, or some other psychological theory that's not actually proven in science (but believed by many). (see my previous post about Johann Hari's work)


Yet is it really a problem or just a way of reacting or adapting to life? 

 
 
 ↔
 
 
If someone experiences a traumatic shock, we often need to tell others what happened. Express it in our own minds, make sense of it. Write it down. Draw an image if it, or just an abstract of the colours and words in your thoughts.

Animals often physically shake after a near miss by a predator, so why don't we cry, scream, shake or do what's needed? We do other people suppress us? 

When my then boyfriend drowned when I was 17, I was given tranquilisers that night by the GP, blocking my anguish and shock. Society expecting me to be 'over it' by the funeral, after all "I was only young - I'd find someone else"... 

With no one to explain the 'hell in my mind' to.





I have since learnt and realise the body is programmed to be alert for future signs of something similar to protect us. Just as it would have done with early man. So if someone was wearing a red dress or there was the smell of freshly cut grass nearby when the trauma happened, both if these seemingly totally unconnected images will possibly remind your subconscious of the trauma, and give you future signs to avoid it. 

For years I hated birthdays, not knowing why. It was only when realising and fully expressing I was at a child's birthday party the day he drowned that this anxiety went. 😒


It can therefore take this understanding that when anxiety hits, 'What was near me just before it started, what it is reminding  me of?' to help release it. Rather than thinking 'I have anxiety now. I need to get away...'




I had this situation last weekend. I was at a pub watching my husband and son's band play a gig and had climbed the stairs to the toilets. These same stairs that I had not climbed for a few years.  The stairs where before I knew I had a brain tumour I could barely walk up as they made me feel so dizzy and wobbly. Knowing something was drastically wrong, yet I was told by doctors it was all in my head. When I felt drunk, but was 100% sober, and so scared.

Instantly this fear came back, but because I knew I had linked these stairs with the anxiety of knowing I had something wrong. I could almost immediately be thankful the trauma was over. I can now climb them OK. Being thankful I was alive. Know that these stairs were part of my trauma, and that could now be released. 


I also can now think 'Oh that's made me a little anxious' and just accepting the fact I am feeling anxious seems to reduce the anxiety!

Where as if I start to panic, 'Oh I'm feeling anxious, I don't like this, what if someone realises... what if, what if, what if'... It just gets worse! 




I again had a really good experience of this a few weeks ago. I was driving my car home alone (I had gone with my husband to collect another car, which he was also driving home) and as I didn't know the area, I was following the sat nav. Initially to the local services. It was narrow winding roads which I didn't like and as I was doing a mixture of looking at the sat nav and checking his car was behind, it made me feel a little wobbly and off balance. (I still can't easily turn back and forth without it affecting my balance) 

So after 40 minutes of driving I got to the services, already feeling a bit stressed and knowing I still had another hour or so to go. (Far longer than my usual driving, and I've certainly not done this distance alone since my surgery.) I told Dave I'd follow him now, as we both knew the way and wouldn't have to look back to check he was OK.

Yet as we got on the motorway, it completely tipped it down with rain. Like the heavens opened type of rain. I could barely see his car driving in front of me. The splash-back of a lorry passing meant I was all but temporarily blind, even with the wipers on fast! I felt anxiety rise, 'I'm on a motorway, they don't even have hard shoulders any more, not that I want to pull over in these conditions anyway as I wouldn't want to get out. I have to continue, as stressful as that may be.'

But I also knew that these driving conditions would be stressful to many people. I am an OK, safe, driver. I just need to relax and be sensible.


So I turned my music up louder and started singing along. Something I knew would relax me. After all no one could hear me with this belting rain! πŸ˜‚



I also asked the universe to protect me, just like it has many times before, and trusted I could manage.


I'd dealt with far worse ... 


We both got home fine, about 2 hours later than planned due to the weather, but we were home safely. πŸ™πŸ» 

I'd driven for 4 hours, minus a short break for some food, and been in a car for 6! Far more than I 'thought' I could drive for, but I'd never really had time to think how long it was until I got home.

So I didn't have chance to judge myself and that it was 'too much' for me. πŸ€”





I guess talking to others helps clarify some situations and experiences in my mind, seeking what others feel and realising that it's 'normal'.

But questioning myself and my beliefs on others is even more available and often just as helpful.

Not judging myself negatively.

Yes I may have anxiety at times, who wouldn't with trauma in their past,  but I'm not a failure because of it. 

I'm getting over trauma and anxiety is part of that. 


Please help normalise it, and don't judge. πŸ’œ









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Saturday, 11 January 2020

How Others Stories Heal

Over the Christmas holidays I read a few things that really made me appreciate how others who have been in the same place you are, or were, are possibly the only people who really understand your experience.

How they can often explain in a way that you have not yet been able to voice, or even consciously accept - much less release.

Their words just holding your soul.

Both of these posts were the turning point on my decision to continue writing this blog again... (after being told I was prolonging acceptance in doing so!)


So two posts I want to share with you, - with the writers full permission. 


One was on helping someone else struggling with anxiety, after their brain tumour, and the daily struggle that ensues. Something that the 'pull yourself together' or 'just take a drug' brigade don't understand, in fact I don't think many can understand unless they have either been there themselves or watched a loved one struggle.

"I used to have really severe social anxiety to the point I didn't leave the house. I made a list of the things that scared me and then starting with the most easy I would try one by one. Going the shop was scary as I'd have a panic attacks and I would cry and have to ask my Mum to use my card and pay for me, or getting the bus would make me cry and run away. But the fact I was still trying it, made me take it as a win. 
Then over the years everything got that bit easier and easier. It has taken about 6 years for me to finally be 'normal' again but it is do-able 😊. As for the seizures I found mine was triggered by stress. But I also learnt that while having a seizure my heart rate with shoot up soooo fast, so I would learn how to try keep calm and breath and as my heart rate came down the seizure would be less severe and would end quicker. Obviously you will have times you just can't do this but it's definitely something to keep in mind 😊
Also with the depression I've learnt either writing down how I feel or speaking to a counselor or just someone who you don't really know is a massive help just being able to offload. I still have my days with my personality disorder, but it's okay to have bad days where you just sit and cry and sleep. It's picking yourself back up again what is important." - Beth Parker

How explaining and others listening, supporting, guiding with kindness and love really can help, but that often we just have to love ourselves more too. Not judge our bad days, or think that we are weak, stupid or wrong. Treat ourselves as kindly as we would a good friend.


One of the hardest feelings in the world is feeling alone -
 even when you are in a room full of people πŸ˜”

⬌⬌⬌⬌


The other post was of someone who had just returned home after his (elective) surgery to remove his cerebellar Hemangioblastoma (which was thankfully caught early and still quite small - before too many symptoms appeared) and had been seeking advice on my support group.

"First memory was coming too and in recovery. Lots of simple questions: Do you know who you are, where you are, what day it is, etc. So happy I did and felt my brain working but I had no voice as hard I tried. They said it was the anesthesia still in me. Finally could whisper and use hand signals. Dr. Patel came in and said I did great and it only took 3 hours. CT looks like everything is out. It most definitely was a Hemangioblastoma and profiles benign. Couldn’t sleep all night but relieved and did simple moves and stretches in bed. Good to be alive and recovery is going great. So appreciate the small things and focused on not overdoing it. I realize everyone is in different spots with this challenge. I appreciate you all and draw from your stories and strength!
Speech is great. A little sticky for first 48 hours and my mind was actually going faster than my ability to get words out. I think it was the drugs but I could not help cracking jokes to almost everyone. Also my sense of relief that my brain was in tact. Tired so fast though and my flashes of energy quickly overcome by fatigue.
I didn’t realize how much stress and dread I was carrying until I finally was brought back and knew my brain was working. It was looking at a clock in recovery and figuring out how long I’d been out, then moving my feet, feeling my brain waves fire up to know simple questions even though I couldn’t get my voice out for a few. It’s quite a surrender, courage and act of trust/faith to do this. I know I had a choice of delay and so far feel blessed by my decision and your support. Thanks Jo and all!" - Brian Gilmore

I just cried when I read this, yes some were tears of recollecting almost the exact same thoughts:

'Did my brain still work? Could I move my body? 
Did it all go OK during surgery and was the tumour all out?'


So yes neuropsychologist woman, you are right it 'brings it back'...



... but what it also brings back is a memory of the sense of gratitude, relief, strength and that overwhelming knowledge I'd survived, the belief that even a few deficits would be an acceptable trade for being alive. The reminder that small things we worry about daily, just don't really matter in the scheme of things. Where I could see the beauty in even run down old buildings as I went home... 


https://www.facebook.com/BrownnCares/

The 'surrender, courage and act of trust/faith to do this' and how those emotions and feelings never truly leave you. How they give you strength forever.

Plus some added acceptance, understanding and knowing of just how far I have come since then. The knowing that others have faced the same, will continue to face the same and being part of a tribe that understands you.

Tinged with a huge happiness that the support I (and others) had given, the words I had written, had impacted someone else's life for the better. Made a really tough time for them just that little bit easier in having the support I never had. 

So yes. 
No one does really understands it unless they have been though it themselves. 
πŸ’œ





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Wednesday, 8 January 2020

My Amazon Book Review

Every so often someone says something that upsets you. They have judged you on their beliefs and standards and can't, or don't want to, understand your point of view. I do understand this. 

But when it's on my reviews about my book it angers and confuses me too...


I really don't get much profit from my book (it's probably not a book you would read if you didn't have a brain tumour or need surgery πŸ€”) so sales are limited, but every penny helps. Along with the knowledge that it has helped others and so I hope each sale is a little bit of trust to someone else facing similar...πŸ’œ

But this was the comment I recently found on my Amazon ratings:

1.0 out of 5 stars New age rubbish!
Reviewed in the United Kingdom on 6 November 2019


One of the worse books I've ever read. Sorry about her illness but couldn't read another word about "angels'' and diatribes against having to use medicines and "evil doctors'' who SAVED HER LIFE!



So I am now feeling rather upset and wondering...

Will people not buy or read it because of someone else's comments? (someone has already found the comment helpful!) 

 

Did they stop reading as I said something they think is totally ridiculous? 

 

Do most people think I am stupid? 

 

Am I stupid?


Plus, also in November, I had someone ridicule me on my Facebook page by giving me a bad review because I said I'd stopped vaccinating my kids, knowing absolutely no reason why I'd stopped, just attacking me for my viewpoint!  Thankfully Facebook removed it. (as the review was nothing to do with my page)

I do realise that I am very much into alternative health, and confuse and even upset or anger many with my views - but are we not allowed to have 'different' opinions? Surely we all will see things differently, depending on what we have read, seen, heard, feel and have experienced?

I know I shouldn't need to have to explain myself, I don't need to explain my differences. But if I don't, how will others ever learn another's view...?


So anonymous Kindle Customer this is partly why I wrote my 'diatribe'... 



I have been into alternative heath from when I was in my late teens: my GP had given me a low dose antibiotic (tetracycline) for my acne from when I was about 12 years old, but within a year or so I had severe
Irritable bowel syndrome (IBS). I couldn't eat most things without feeling really ill after, had to drink a mint powder to calm the nausea once I had eaten. I spent most of my teenage years with stomach bloating, pain and feeling nauseous. 

During this time I kept seeing my GP and had them saying I was fine (whilst I'm sure all they did was pregnancy tests as I had nausea - they often asked for urine samples!) I went to a gastroenterologist, had a tube down my stomach at age 16 and yet nothing they said or did helped. Only the more 'natural' things I tried or avoiding certain foods helped - things I'd found out or been told by alternative health practitioners. I had asked my doctors so many times was my IBS linked to the antibiotics - as when I stopped them (which I had to every few months) it eased a little.  The response was always "no, it's definitely not related".

Roll on another few months, turning into years, and I read a dental nurse friend's medical book she had left at home which listed the side effects/reaction to drugs and sure enough a COMMON side effect of the antibiotics I was taking was nausea and stomach issues - basically the IBS symptoms I was suffering from!!! 😞😠



I stopped the antibiotics, although my stomach symptoms didn't fully stop with it, my gut was damaged by then. 


I will also add that a dermatologist at this time wanted me to take Roaccutane and thankfully told me some of the side effects. I would need eye drops for my contact lenses as it dries up all moisture, and also that if I accidentally became pregnant I would need the baby aborted due to the damage it would do to it! This kind of terrified me... if it damages a baby this much, what does it do to my own cells? I was informed enough to chose not to take it. The side effects of this drug have since shown to be awful, including making people suicidal and destroying many lives in the processπŸ˜₯.


When I had my eldest child a few years after I was terrified morning sickness would be worse than my IBS... but it was a walk in the park to what I had dealt with for years! 

30+ years later and my stomach has never fully recovered - I still cant eat wheat, have caffeine, alcohol or too much sugar and was diagnosed lactose intolerant years ago. (The doctors only believed me on that after they got test results... I didn't matter that I was on the loo all afternoon after drinking lactose for the test!😬)


My wisdom teeth were orange when removed (the dentist kept them to show medical students) and I later found out tetracycline can apparently damage your bones and growth. (I was the same height at 12 when I started taking them, as I am now πŸ˜‘)  


But not once did anyone acknowledge this. 
Nor the fact that I shouldn't have been taking the damn antibiotics for almost 7 years anyway!!!!


⬌⬌⬌⬌

 


So basically I got into nutrition, healers, alternative therapists - homeopathy, reiki, bowen, craniosacral, osteopathy etc. I healed much of my gut with diet and didn't have many medical procedures for years. 

The few times I had mainstream treatment, maybe as I was used to looking at the causes and changing them instead of getting what I call an 'elastoplast' and covering symptoms, I was treated appallingly - including one consultant hurting me and saying "You have pelvic pain, what do you expect" after I all but screamed! 😑 And then actually laughing at me when I said I was trying homeopathy for 6 months and not accepting his laparoscopy just to 'explore'... He, still laughing, said he would see me in a year or so when things were worse. For what it's worth, I never went back as homeopathy, supplements and diet change helped, and so I didn't need to.

Since I started treating things holistically, it expands to all areas of your life. I stopped using mainstream chemical skincare and household products. I had, no drug, home births. (Again because of bad treatment with my first hospital birth- where Dr's went against my wishes in hospital causing issues for both me and my baby.😠) I co-slept with my kids. I breastfed them and never gave them formula. They had vaccine reactions - I asked questions, researched for YEARS and then stopped vaccinating. (The vaccine nurse actually going against the manufacturers vaccine insert and lying that my youngest son was fine to have his vaccines on time, when in fact he would have been contraindicated not to have them. Like I'd ever just trust them again after that?!πŸ˜”) 

I found most things can be healed with time, sun, a good diet and the natural herbs and minerals our planet has given us. My youngest son has been to the Dr's twice since he was a tiny baby. I didn't take even a single paracetamol for 10 years, I had no need to... 

Hence why it was a BIG mind fuck when I 
needed urgent brain surgery!!! 


I was honestly as terrified they would give me a vaccine or a drug in hospital, when I wasn't aware or able to consent, and that could cause more future damage; as I was from having the op... 
  
...and yet many people still laugh at me for questioning it... 
Not trusting a profession who has hurt me many times and even got things so wrong they could have killed me in the past...


Not trusting things that are now being shown in places like the What Doctors Don't Tell You book, and many of the 'fake news' websites! Or the fact that medical errors are the THIRD leading cause of death in the USA.


⬌⬌⬌⬌

Plus of course you can also add in the fact that my GP's had missed the fact I had almost every sign of a brain tumour for months, said "no" even when I asked them "could it be a brain tumour?" and refused to refer me twice to a neurologist on my requests. Then the health ombudsman ignored my case and basically said it was acceptable treatment!! (There is all the PHSO info elsewhere on my blog, and I am certainly not the only one where they have upheld part of my complaint, whilst ignoring the more serious concerns - see phso the true story)   





Science should continue to change -   
just like it has since cigarettes and thalidomide were 
promoted in pregnancy.
New things being discovered and finding out old things dont work.
But its treated like a religion where you cannot question the narrative...


Even if you look at most pharmaceutical drugs side effects or efficacy rate you might be shocked at how low the % of people helped can be. Look at placebo studies - they are fascinating as they often work as well as an expensive drug, or that placebo knee operations work as well as the real thing. (just look at David Hamilton's work.) Often many natural herbs, or IV vitamin c work as well, or better, as the best drugs on the market, but as they cannot be patented its not offered as a treatment - no one makes any money!!! Same as you cannot mention other cancer 'cures' due to the 1939 cancer act... even though many things have PROVEN results of even terminal cancer patients who are well again. Including nutrition, cannabis oil, GcMAF etc ... (The truth about cancer is a good place to start.)



So Kindle customer ... I truly hope these things change soon, its a scary world where our kids might be drugged and not given chances purely due to profit... 

 
Plus I would also like to let you know that if you read the rest of my book, you would find out that I am forever thankful for Mr Jones for his amazing skills that I admit saved my life. 
πŸ’œ
You may also notice I dedicated my book to him and have given him a 5* review on I want great care
πŸ’œ
I also went out of my way to fund raise for St George's hospital. 
πŸ’œ



I can fully accept Dr's save our lives πŸ’œ Although I wish more would admit that sometimes they don't know, aren't sure, even need to google or ask others doctor's opinions or expertise.  Some just need to accept the fact we are not machines and don't all work the same!  Or that information has moved on since they were at medical school and their pharmaceutical reps don't tell them everything. πŸ˜‘ Or tell us we dont have something - as the symptoms we have were not signs of it in their medical books!!!

Another whole topic in itself would also be how they are expected to cope with the shifts and workload they are given on the NHS and expected to not make mistakes. I know the 5 nights I was in hospital, several times I heard one nurse explaining to another that someone had accidentally had a drug too early or similar. We all make mistakes when tired and overworked... and this, and much of the medical system, really needs to change for the amazing people who I believe are doing their best to help us πŸ’œ 


Oh and re the angels - 

I hope you aren't religious and pray to a 'mysterious god' of any kind? 

Nor ever have the need to trust in something greater than us. 

The prayer that gets us through...  




...actually, with the world as it is, I take being 'New Age' as a compliment! 😁





Finally, if anyone has read 'It's all in my Head
and it has helped them in any way would like to leave a review on Amazon... 
please do so. πŸ’œ 






Thursday, 2 January 2020

Off Grid

I have disappeared for a few weeks. It's taken me this long to find myself again.

I had a neuropsychology appointment at the end of November that didn't go as expected πŸ˜• I went there  thinking I was getting some kind of cognitive tests or thoughts to help with my hand, head feelings, vision, fatigue and how they have changed so much since surgery. How to cope better with the new me.

But instead she focused on my (health) anxiety as I, mistakenly, said near the start of the meeting I had it for years. πŸ€” (Since my boyfriend drowned when I was 17, after telling me the week before he would be dead within a week. πŸ˜‘  I admit it took me years to get over it and I guess part of it has never fully gone, something like that does imprint on your brain slightly.)

But for this woman to judge me on who I was 28 years ago, telling me what I needed and what I was doing and why, even when I didn't relate to what she was saying - it felt a joke... 


I wanted support not judgement.

"I am me. I was abused, made to feel worthless and shamed, manipulated to doing what others want. Put down. Ridiculed. Left to cope with premonitions, alcoholism and then death ...when I was a child.  A fucking child!!!! It literally tore me up inside. While I was made to pretend.  On the outside no one knew. 

I have had countless days when I never thought I'd even make it to the end of that one. Countless nights with inherited emotional worry and stress consuming every fibre. Feeling the physical pain of others.
Yet, I brought 4 kids up... Me doing most of the physical day to day work. Exhausting. Emotional. Non stop. Without payment. Without even having a drink at the end of the day to calm me. For 25 years so far... 

Fuck I deserve more credit than this... 

Then I went through hell with my brain tumour. With how much hospitals terrify me. How I don't trust dr's to do what I want and that I always need to be alert. I had to be my own representative much of the time. Yes, there was a point I did have to trust and let go, but soon enough once again it was back to me. Looking after myself. Looking up things to help me, support me. Yes, I know family helped with cooking etc and took many of the daily tasks away and of course I am thankful for that, but I still did many things myself, and all of my own health care. 

I feel I got through it far stronger than I started. I survived what I thought would kill me.

But, as ever, the only way was to support myself. Like I have done for the last 45 years."

She also seemed to think that even talking to others on my Facebook support group for others who have/had hemangioblastoma's would be 'reassurance seeking' and make things worse!! πŸ˜¬πŸ™„ Even though this is the place where people understand most about the frustrations and acceptance of what I went though - as they went through the same too.  πŸ’œ Many have had surgery in the exact same area of the cerebellum, and have very similar side effects. The side effects I'm not 'supposed' to have... 
Where I also support them, support others who are waiting for surgery and terrified.  Discuss things that have helped me, as they may help them too. 

Same with writing my blog, apparently -
'I'm prolonging acceptance that I'm 'normal' again'!! πŸ˜”


She kept saying over and over (in what felt a rather sarcastic voice, think Delores Umbridge in Harry Potter films) "Mr Jones says you have no medical issues now..." 

When I said, "I know this, but I want someone to support me with what can I do to address the fact my life has changed, my hands curl and no longer work the same. I can't do (my passion of) art as I did, or sewing (I cant even thread a needle easily WITH my glasses on), or crochet ... I drop things, I can't even do up jewellery clasps without a struggle.
My vision is shit. It feels like it did before I knew I had my tumour. Oddly blurry and fuzzy. Yes I know I've got old and long sighted, but again I can't see properly at times even with my glasses on.
My neck often hurts as does my head. Yes I know things are 'normal' but what do I do to cope better with what I now have? 
I've been to the GP, who does some tests - which are normal - then says to see Mr Jones as she thinks it may be tumour after effects, who (after waiting months to see him) says 'I'm normal', and so I'm back to the start with no one within a whole year who can actually help me with the issues ... Can I stop further deterioration? Do I need to do exercises? I know it might be nothing to do with the op, but it DID all start after it."


I never really got a reply, apart from she said again "but Mr Jones said you're normal"


I was gutted. In tears of frustration, disappointment and anger. Apparently this means I just have anxiety?! 



Yes I know I have PMDD, my moods can drop and I struggle to cope with hormones, How feeling irritable, overwhelmed and tearful from hormones, as well as more fatigued, doesn't mix well with my struggle with the side effects from a brain tumour and surgery. The fatigue in itself makes my speech, coordination and balance all feel worse again. I feel a failure to myself and my family.

But none of this even came out in our conversation. I was too judged on the box she wanted me to fit into.

So she is referring me to another neuro-psychologist. Who she said would do more talking and then possibly refer me back to her for cognitive assessments only if I needed it. She also mentioned taking anti depressants - which I am about as likely to agree to as win the lottery.😬 I said to her "I don't take drugs as they don't suit me and have seen too many studies that anti depressants don't work more than a placebo or talking, and can even ruin people's lives." Which was scoffed at.

I only realised fully when I got back home...

I am not depressed - I'm fucking angry! 


Not really mentioning that I need to talk... Or to feel useful and wanted.  To have others who understand and listen, or that I don't have enough other people to talk to and am isolated now.πŸ˜• 
So I'm still partly worried I'm going to get labelled as having a disorder and then possibly be labelled further as 'refusing treatment' - rather than them helping me with what I struggle with.... 😒
Not the best result πŸ˜”

Hence why I disappeared. πŸ™ˆ



But a few weeks later, and I still feel I want to help others in similar circumstances to what I had cope with, I'd like to support them more as I understand from being there. I feel there is a place for me doing this, albeit I am not exactly sure how ... Yet hearing a neuro-psychologist saying I should stop as "it's reassurance seeking or stopping me moving forwards" feels so far from MY truth. It's empowering me. I did it. I coped. I have changed my view of life. I am proud of myself for doing so. I want to help others cope too.πŸ™

I know I need to focus on something positive, fuck me I know I can do more, but I could do with some support and guidance. What 'I' am interested in, not what others think it best for me. How to cope with my 'disabilities' (I can't think of another word, but I want this to be strong and accepting of the deficits I have, not the weakness) and my strengths.

It's taken me five weeks to find the strength again to both publicly 'tell the world' and realise writing my blog helps me, helps me move forwards, not holds me in the past. 

And if it helps even one other person - it's worth it. πŸ’œ







.




Monday, 18 November 2019

Accepting Myself after Brain Surgery


This is not a post to brag about me, as I know I am far from perfect.

But this week I have had 3 people tell me how they love me, how amazing I am, and they just wanted me to know and realise this fact πŸ’œ and then just gave me a hug right where I stood πŸ’œ Plus a few other people who have spontaneously hugged me!

 

It has so helped me feel better about myself πŸ’œ

 


As ... sometimes it's hard to keep being 'you' in a world that wants you to be something different, a world that judges you on what you look like, every mistake you make and where what you possess equals how admired you are.

 

 




On lots of these I don't have much. 



Up until a couple of months ago I was starting to become totally depressed with 'me'.

The fact I still say wrong words so often after my brain surgery, the fact I'm so often fatigued, I have no money, barely any monetary possessions, no qualifications, many of the skills I had went a bit AWOL along with my tumour surgery & I realised I certainly had PTSD from it... plus I have certainly been feeling and looking my age. πŸ€”

A couple of months ago I realised I needed to let go of the 'shoulds', and to accept my 'faults' as they are.


Accept the 'new me'.



I would have been dead if it wasn't for an amazing team, led by Mr Jones who took my tumour out. They gave me another chance.

I realised again something that I knew inside but had been buried in the changes in my life ...


So what if I sometimes get the word wrong, 
struggle with feeling shattered, worthless or don't live up to 'normal'. 
So what if I don't look 20 any more, I'm fucking lucky to still be here. 


Heck I was born with red hair 
... I was born to be 'me' 
...to stand out and be a little different. 
I've always had a bit of rebel in me, 
so why am I taming and changing myself now? 


I went through the hell of surviving a brain tumour, the total and utter physical and mental exhaustion, the terror, the having to accept, having to trust... The comments and judgements that still happen when I'm tired or my brain and body have not yet woken. Their judgements, when no one knows anything about me, nor my life... 

The fully letting go of how others see me, after all how can you do anything else when you have been seen at your worst for months, where you spent most the time crying, feeling awful and you cannot even see well enough to put make up on if you wanted. πŸ˜‘ Not that at the time I cared one bit. It was the last thing on my mind!  You totally lose the illusion that it matters.


Who wants to be a cloned, fake Barbie doll anyway? 
I like being REAL...


I never wanted to me anyone else but me,
so why was I getting so stressed with what I couldn't do now? 



I let myself off the hook. Stopped judging me. Stopped getting upset with my struggles and focusing on my positives and improvements instead. 

During the months of brain surgery recovery, where it took so long to wake myself up each morning and even longer to open my eyes. Part of me stopped judging with my eyes, and instead feeling with my heart. I needed to keep 'seeing' things that way...

Do I actually give a shit if I have wrinkles or an odd white hair? No, as if I shut my eyes I don't see that, I feel my soul. 


I have learnt so many lessons during the past few years...  Of what really matters.



After surgery I had been hit with the realisation that I had spent years, decades, worrying over so many issues, but how many had actually come true? Probably less than a handful!

But had a ever worried about getting a brain tumour? Not for more than about a minute! Did I get one anyway? πŸ€”πŸ™„ And if I had thought about it, what would worrying about it have actually helped... ? Absolutely nothing. Just made me feel worse for far longer.


But for several months this realisation went again, disappearing with the daily struggles, the why's and the feelings of stuckness. 



I know I could easily worry about so much just from my head symptoms alone, and can easily think is it my tumour returning. However I had been talking to the lovely Ivana who reminded me how my thoughts create my experience. 

I could either see my half numb head and it's increasingly itchy or sore scalp sensations as a sign of a problem or that, instead, my nerves and muscles that were cut in surgery might be growing back and healing themselves? Sensations returning. Yes it might be that they are very weird at the moment, but which of these thoughts will make me feel better? πŸ€”

I also fully realised I'm an empath. I feel others emotions (the strange sensations are very often not my own) and their pain that I often don't think they fully realise. I am someone who will happily hug another person in this understanding.


It's fine for me to do what I need to reset myself. 
To be me. 
The full unabridged version of me.


With that... My mood nearly changed overnight! πŸ˜πŸ’œ

And my happiness, and hug levels, have rapidly increased  πŸ’œ




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