Wednesday 28 August 2019

Beaches and Castles

Last weekend was busy. We went to Littlehampton to see my aunt and family and have a bit of a break. 

We had a quick trip to the beach on Friday, and for the first time since last October I was back on a beach. 😊😍 Though this time it was 1000x better as I was bare footed and warm, instead of cold from the rain and wind. It was so calming, even if we weren't able to stay there for very long that evening.

On Saturday I went to Arundel castle with my husband and son to watch their battle reenactment event, as well as looking around the castle and climbing the keep. 

I have no idea how many tiny, narrow, curving steps we climbed, but I was very impressed with how much my balance and coordination had improved as many of these steps were extremely steep, irregular and worn - yet not once did I trip!

Believe me that after once not being able to do this (or even walk in a corridor without walking into walls, or generally bumping into people) - 
I was very appreciative that I could now do so. 

I also managed to climb to the top of the keep, take pictures and look down - without my legs going weak at the knees, wobbling or feeling sick! 😁 Again a very strange experience as I have never liked heights... I am the sort of person who can wobble standing on a chair as it's too high 😵 😂 Yet here I was several stories up, even on wooden plank flooring that I could see through, and not only did I feel fine I was able to take photos!😲

Although with this climb, and afterwards walking around the tents, up and down the slopes looking at the various stalls, I did feel a bit shattered. Yet I simultaneously also realised that it was about 30 degrees and everyone else wanted to sit in the shade too.😁 But I felt normal. For the first time in over 3 years I felt 'me' again. 💖

In fact I felt better than the 'fatigued normal' I had been used to from long before my op. As I never would have been able to do this for a few years before I knew a thing about the tumour...


That evening I also managed to beat Roan at a game of pool, plus play (a newbie version) of table tennis for 10 minutes. I don't catch balls. I cannot coordinate. Yet I managed to hit it most of the time and even catch the ball in my left hand if I felt I couldn't hit it. 😲 I decided my left hand was far better at catching than my right side. Although I am right handed my tumour was in my right cerebellum which (unlike the rest of the brain) links to the right side of the body, and well - I have a gap or two in my brain. 😂

A couple of days later, and despite bank holiday traffic chaos trying to stop us getting a parking space, we were able to get back to park near the beach. We had decided to go to a boating lake where they had pedalos. It had seemed like a good idea until I realised how hard they were to actually pedal 😂 but clearly using the reclining bike at the local outside gym had helped as I managed our allocated 30 minutes with my legs only feeling slightly achy after! Even if we did occasionally let the boat float gently for a few seconds.

But.... I went on a boat!!! Me... on a boat. 😲😁 Yes it was on a lake and not the sea, but (again rather pathetically) I used to feel nauseous floating on a lilo in an empty swimming pool. 😂 Yet not once did I feel nausea or wobbly or anything. Just how much had my tumour unknowingly been affecting me for years?

After this we then went to the seafront, where to Roan's amazement, the tide was out. So there were several metres of sand to walk on, and a very shallow sea for quite a distance.
Putting my feet in the stones, sand and sea - just grounding in nature.

And the sun was gorgeous.

It actually felt like being on holiday. 


I need to do this more often. 
I need to feel nature. 
I crave the calm and the peace...

I so want to move from the constant reminder of having a brain tumour. 
Somewhere I can reconnect with the earth. 
Reconnect with me. 



Wednesday 14 August 2019

Butterflies and Clouds

Last Monday I was still feeling stressed and upset, trying to decide what is best for me and how to move on. So at some point while I was walking round the park with dog I asked the universe out loud to send me some positive signs... Something with nature - so 'I know'.

Birds, butterflies etc, my thoughts that one of them might land on or sit next to me.

Just send something to soothe me that I wasn't in this alone 
and things would get better ... 

Then it poured with rain after so I never got outside for the rest of the day 💧⛈🌧. (English summers really are depressing on so many levels 😥)
But Tuesday was sunny, and I finally sat down in garden (after a trip back on bus from A&E with my daughter, Calla, who had twisted and sprained her ankle - thankfully not broken!) I was just lying on the swing chair ... Exhausted. Soaking in the, much needed, warmth from the sun. 🌞

And suddenly I saw this beautiful butterfly flying around me, then it stopped and rested on the skin of my leg before flying off again! 🦋 

Then as I continued to watch it fluttered back and sat on the fence right at the side of me, only a few feet from where I was laying. It sat perfectly still for about 5 mins, barely even moving it's wings. After this time I realised I needed to go and get my phone camera, and even though it took me a while to find the phone, the butterfly was still sitting there, yet as soon as I took a picture it flew away.

Now I know to some this is not an unusual occurrence, but we really don't get many different butterflies in our garden (just Small Whites, various brown Gatekeeper types or tiny winged butterflies) and we almost never see a Red Admiral. Maybe one or two a year, even if I have spent the summer basically living in the garden! In 19 years of living here, I have never had any butterfly actually land on me ...
Something told me: "It will be alright." 

Oh and just after I recalled that I had actually asked for this very thing to happen the day before 😊
I looked into the sky to see a cloud that looked as thought it was similar to hands making a love heart shape! (The cloud being the hands, the heart the space in between was blue sky)

I sat and just looked at it for a few seconds before I fully realised it was a cloud giving me a heart sign in the same way a person sends a heart sign...then laughed to myself saying:
"OK. I get the message." 

My attempt at taking a picture wasn't that great as I had sat smiling at it for too long before I thought "I need to keep this reminder" and so the clarity of the heart shaped cloud had very much started to disappear. But still the message was there for me ... that the universe has my back.💖


Monday 12 August 2019


I have not had an easy week.

It started off with my vomiting for most of last Monday evening and while I may have physically stopped puking the rest of the week has had a similar way of kicking me in the guts... 

I had been thinking about doing some charity work. I have been pondering it for a while and decided to actively look at what is local and that I feel I would like to support and also can relate to. I realised there is an aphasia charity, Dyscover,  nearby. Not exactly sure what I could help with but they want volunteers and I can relate to the frustration of not being able to say things when you want and either going blank, saying the wrong word, as well as people looking at you like you are drunk.

Or I found out there is a Headway office less than a mile away from Dave's workplace. They support people with all kinds of brain injury. 

I also know how that feels! 

Both I feel I can relate too, but also both charities should understand if I struggle with the emotional or physical side of volunteering, the trying to get self confidence back that I am worthwhile, dealing with feeling wobbly, tired etc 

So I mention it to my family and get told that if I want to get out the house then why don't I get a job? 😕

Um ... 

1) I haven't had a 'job' for over 25 YEARS.

2) I don't want want to work for others. I don't like being told what to do or like how our society works. I don't want to be tied. (Hence why I've only done self employed work for decades)

3) Who the fuck would employ me? (With my lack of skills and attitude to a 'job')

4) I still get tired easy, am clumsy, say things wrong and get muddled.

5) I want to do something meaningful for society (and me!) not just stack shelves in a supermarket, or some other 'no qualifications needed' job. I've done brain dead cleaning and washing up at home for kids for the last 25 years, I want something more.

6) Maybe, just maybe, I would get on well and be offered a part time job doing something I enjoy after, or I could write some articles for them? 

I get told that they think it's a silly idea and given all kinds of reasons why I shouldn't even consider it. 😟😭😡

I also mention about wanting to move to somewhere more rural and get told I am "running away" ... ?! 😲

So last Thursday afternoon, massively upset with these feelings that 'no one understands', I finally had (after months of waiting) my appointment with my neurosurgeon,  Tim Jones. 

I actually thought I might go there alone, so I could fully explain my struggles without family judgement. But after deciding to lay down in the sun before my appointment to relax, I then felt wobbly, off balance and my neck hurt. I didn't want to drive feeling blurry as I don't feel I react properly when I feel like this. So I needed a lift.

I get there and talk to him. But within a couple of minutes, and a couple of tissues from my crying later, he simply tells me:

"I think you have PTSD. I will refer you to neuro psychology"... 

I honestly didn't know whether to laugh or cry - as for so long I have asked people for help and support and been told I'm either ok, need to get on with other things, forget about it etc and not once has anyone offered to get me help! 😬

He also listens to my issues and tells me: "Your tumour is out, I haven't had any that have grown back". (And he had no concerns at all, and that my issues are all nerve damage.) He basically tells me I should really try and move on. Get support to do so, (hence why he will speak to the neuro-psychologist) but try and let go of the surgery and move on...

I totally get him. 


I have no past I want to go back to..
no future career or plan that makes sense...

The only time I'm my life I felt I have actually helped others (except my kids - but 3 of them are now adults!) was in writing my book, my blog posts, or speaking to others on Facebook groups and via my page. Others who are, or have been, where I was, who tell me they have been helped in knowing they were not alone. 

I had a purpose - and one far bigger than me.

I explain briefly about thinking of working for a 'brain' charity and he says he doesn't know if it will keep me stuck in the pain of the past by doing so... That I need to move on.

Yes! Maybe this is part of the reason I want to physically move house? To give me new surroundings that don't remind me of having a brain tumour...😔

It's not just my brain craving the peace of more open country since my surgery, for 15 years I have wanted to leave my house for somewhere different. Get out of Surburbia. Now it seems the thoughts are shouting at me... make that screaming... rather loudly...
I so get it. 

But to move on with my life?
Moving on emotionally? 

I often see, read and respond to posts on Facebook from others with brain injury or brain tumours. I am held in the past with others reminding me of it daily. Yet it's still current. My body is reminding me of it daily too. It's still very much a part of me. I'm still struggling from the after effects. 

So I have spent the last few days thinking 'What do I want?' 
What would I do if I didn't have to worry about income or others thoughts? 

There is a small part to me that reminds me I love painting... But I have also grown out of love with how painting now makes me feel when I struggle with my vision and hand control. 😢

I love being outside - but I cannot do this in the winter as I get too cold far too easily. 😕

and ...

I love writing. 😁 
I can do this when I am tired, emotional, energetic or happy. Plus it can help others? 


I feel that I 'can' move on while still helping others? 
It makes me realize that I have already changed - for the positive. (Even if I have several issues I need to still work on... who doesn't?!😬)

I think I can help others as I have been there. 
To hell and back, in various different ways. 
I understand.

Mr Jones said he thought I seemed more upset than I did before my op... But I said "oh no. No way."  Back then I was terrified, totally lost and out of control. 

Now I am upset. I need to move on, do things for me and get some power back. The tears are knowing I have to change but I don't really know how. They're finding my strength. 💗

I still am unsure if I should stop my Facebook posts and/or not look at volunteering at brain charities. Or if I should continue with one or both of them, knowing how far I've come, knowing the gratitude that I'm no longer there.

Oh and I think my midlife crisis has hit ... I need to find 'me' again... 😳😰😂

"If YOU have any thoughts, experience or guidance on this, then I'd be grateful." 💗


Saturday 3 August 2019

Boundaries & Imperfections

In the midst of feeling stressed and struggling, I often find I am shown something simple, an everyday occurrence, and suddenly it makes sense of my emotions and gives me some kind of clarity on a situation.

This week I was walking my Collie round the local park on our daily walk. I had noticed that they had just painted the boundary line of the cricket pitch. (It's not used as a regular pitch, so often the boundary lines aren't there, and when they are they change them for whether it's an adult or child size pitch.) 

The pitch is also never normally circular as there is a building in the way leaving a short, curved boundary on one side.

However today the boundary line made me smile, it wasn't just curving or taking an area out of the normal circle. It was positively swerving around every obstacle and very crooked!

Here are the pictures, and my thoughts, from as I walked:

It reminded me that as imperfect and wobbly as I am, I just need to remember to let go of what I think is 'right', trust and enjoy the game.