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! 😂

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. 🤔


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! 🤔

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. 🤔

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? 🤔 

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!! 🙄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. 💖


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. 🤔

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.

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. 


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. 💜

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! 😂

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. 🙏🏻 

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. 🤔

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. 💜