Music, crackles and tuning in...

I recently found this quote I had written back in October 2009 appear in my Facebook memories:

"Was listening to my very crackly radio in the car today and decided that it's rather like life... you can either 'tune in' to the music and enjoy, or just focus the crackles and start to go insane. "  

I find it quite ironic when posts like this appear. This was written years ago, years before I ever knew anything about a brain tumour, when I know I didn't understand it as deeply as I do now, and yet it very much applies today.

I have had a tired week, I have had a wobbly and uncoordinated week. My neck and head has been  itchy, the muscles tight, sore and aching. Several times I have felt myself having to re-balance myself, and my vision, reminding myself that the symptoms are just a side effect from the tumour or surgery and everything is OK. To keep going. To get on with it and still take the dog to the park even though a big part of me wants to just sit down as it doesn't feel right.

A couple of these occasions were even as I was listening to music - watching my son and husband playing in their band at a rather loud gig - the bass felt it was going through every pore of my body and vibrating it, the guitar felt just slightly too high and loud for my head... part of me wanted to get away, move further away from the sound and lights.

I felt that if I focused on these feelings I would need to move away and go and sit somewhere quieter, which I have definitely done before. 

So instead I told myself I was fine, maybe just a little more tired and sensitive that I know I can be at times, but certainly not something I haven't dealt with over the last couple of years... and to 'get on with it'. Listen to the song.

Then somewhere in the 'tuning into' the music I lost the negative, the fears, the frustration and just felt the power of the music instead. Feeling a huge wave of love, strength and energy rise over me instead. The timeless rhythm that engulfs my soul.

Music always has been powerful to me, a way to express, a way to calm me, to cheer me up, as well as a great healer. It is even better when people that you love are playing it, you can feel their passion too. 💕

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I had listened to an old album last week and there was a song on it I had not heard since I was a teen, suddenly in the middle of tidying the house (loud music always helps with this chore!) I just started sobbing, massive tears running down my face. At first I thought I was a little mad, then realised this song was reminding me of something I had hidden, something I couldn't face many a year ago, and so I just listened to it a few times until all the memories had risen and been released. Along with the hurt, the pain and the anger I didn't know I still had inside. Until the tears stopped... and the emotions went with them.

Until the song just made me smile.


Every time I feel this magic from music, where my hairs lift up and I feel shivers down my spine. I think of playing Muse on my iPod the day after my surgery... I had been terrified, was still terrified, my meditation CDs were no longer working ... yet a few songs into their 'Live in Rome' album and I was tapping my foot to the beat. Calm. Tuned in. Just as I had been only a few weeks earlier, listening to a whole stadium singing along to their songs. Feeling the connection. Not just with the band or the song, but with the planet. The knowledge it's all OK.

So this is my challenge for a while... any time I feel negative emotions, I am putting some music on and tuning in. 

Even if there are some crackles.

The Alternative Guide for After Brain Surgery

You realise why they have a full length mirror opposite the toilet in hospital bathrooms. Simply as you cannot turn your head to look sideways to find the loo roll or look down at what you are wiping. Just use the mirror! 😂

If you are in any way sensitive please note that steroid tablets stop you sleeping, or in fact relaxing. Making you feel like, what I can only imagine, is overdosing on coffee spiked with amphetamines. So make the most of sleeping while you can immediately after the general anesthetic. It was the only occasion where I slept for more than 2 hours at a time for the whole week I was in hospital. As soon as I stopped taking the steroids, I was shattered.

In hospital (probably another lovely side effect of the steroids) you will hear every bleep or noise of all the various machines (and each person has at least one machine), the phone ringing, the nurses talking outside – just everything. Each bleep will be like an alarm clock going off and jolt you to your core every time. 😣 Like I said... you can't sleep!

Get some music and use earphones to stop yourself going insane. I had an iPod with various meditation, relaxation or healing albums, many of which I was already used to, so I could just listen and know my body was relaxing even if I couldn’t sleep. It blocked out the hospital noise as much as it distracted me with something I liked. I also had a variety of music, including a live album where I could pretend I was back at a concert and listening to the whole stadium singing alone (feeling happy is so healing in itself) and also some heavier songs for if anything kicked off on the ward that I wanted to block out. Seriously - my iPod was my number one must have - music saved my sanity! 💜

Ear plugs were far too much for me, as it amplified every bodily noise inside me (which wasn’t good when I was already hypersensitive from the steroids) plus they didn’t distract or block out the ward noises.

The day after surgery it felt like I had a tap dripping in my head… It’s almost like when your ear clicks, but inside your skull and it shakes you up on every level! Don’t worry it’s just your cerebrospinal fluid filling back up again. I did my version of craniosacral therapy – holding my hand on my sacrum area and visualising bringing the fluid down my spine and the universe healing me, which I am sure really helped. My sacrum started pounding under my hand as the clicking in my head reduced, then stopped. Although if you do it for too long you get a numb hand and if you tell your neurosurgeon what you are doing expect them to think you are just a little insane!😉

You feel like you have a bee buzzing inside your brain- in the area where the tumour was. Apparently this is ‘normal’ too.

Having a tube stuck down your throat for several hours really feels like you cannot swallow or cough fully after. Raw honey was so soothing, and don’t try and eat anything other than small pieces of soft food for a few days. Biting into a whole apple is not a good idea!

Arnica, have some Arnica homeopathic tablets… and take them every time you need a pain killer. In fact most of the time I felt they were better than the pain killers and also I didn’t have the horrid side effects of feeling ill and nauseous too. I don’t care if the nurses thought they were placebo… it’s the best placebo I’ve ever had! 😀

And while we are on Arnica … Arnica cream. Oh my! This was my addiction! Put it around the scar (not on it) and it felt like someone had just massaged my head, un-knotted the pain, cooled it and calmed me all at once. Every couple of hours I kept asking someone to apply some more 💜

They glue your hair away from the incisions. It’s not so bad on yourself – unless you look in the mirror or try a selfie! 😬 But looking at 5 other women in the ward all with their own variety of huge scars and mad stuck up glued hair is slightly disconcerting. They all look like they have been in some awful horror film and are still in prosthetic. The bruises many have on them also add to this look really well... 👀

Leaving hospital is surreal. It all looks different in the same way another country does when you first go there on holiday. You see signs on buildings, birds in trees and even beauty in Tooting! Make the most of it, it doesn’t last long!

The first few weeks at home after brain surgery I slept most nights without waking, plus also needed 2 decent naps a day minimum. I could sleep 11 or more hours a day for months after. Before surgery I used to wake up when my kids so much as walked to the toilet in the night, after they could have had a party in the room next door and I wouldn’t have heard! I often woke to find my whole family were up and showered and I never heard a thing or be told the dog barked for several minutes in the night, or the doorbell had rung. 😫 It’s also a great and very valid excuse for not answering the phone etc.

If you have surgery in your cerebellum, they cut your neck muscles. This hurts. Far more than anything else did. About day 10 the muscles started cramping up and I ended up taking paracetamol and codeine (after not having any pain killers since day 2) They didn’t really help much and I just felt spaced out and nauseous instead. The best thing was to get someone to press the muscles and lightly massage them as it stopped the insane cramping. When I moved position or got up to walk to the toilet my husband literally had to stand behind me as I walked continuing to press the muscle as hard as he could just to make it bearable. 😱

As the numbness and swelling in your head wear off, it is replaced by an itch you can’t scratch – inside your head! It feels like it is under your skull and no matter what you do, you can never itch it. It’s just like an itch under the bottom of your foot when you have thick shoes on and can’t touch it no matter how much you scratch around your shoe 😒… it can drive you insane! The best thing to do is either scratch your neck as it can ‘sometimes’ help relieve it a little (but you have to be careful not to do this too much and make your skin sore) or just sit on your hands. It goes off eventually!

You wish it was Halloween and you felt quite a bit better than you do - so you could actually go out. As you know you would win the best Halloween costume ever with real staples in your head. 😁

If you ever want to get rid of someone show them the photos of the staples in your head – they kind of start to freak out and go a little squeamish and leave soon after 😂 (Unless they are a nurse or doctor…well actually it works with some of them too...  😕)

You may feel like you are dreaming the whole experience of brain surgery as it doesn’t quite feel real. Unfortunately you aren’t, it’s just a weird dream like experience that continues for weeks.😬

But... the upside is. For a while after you get a sort of high... you survived brain surgery... what should have killed you... and you feel just a little bit proud 💪

Self Healing

 

Today someone asked me on my brain tumour Facebook group what I meant by self-healing. I guess it’s a strange couple of words and an even odder one for many to actually apply.

For so many people it seems like they are not able to listen to themselves, listen to their body- what THEY want or need to do. They have been told as kids to not cry - ‘don’t be a baby’, to eat your greens - as they are 'good for you', go to bed by 9pm - like behaved children do, that you ‘have' to go to school - follow the rules and don’t misbehave, and constantly reminded that ‘we all have to do things we don’t enjoy’.

Then as adults it all gets compounded when you can only take days off work if you are sick or use your holiday days, and you have to be on time or you don’t keep your job - no matter what is going on in your life.

We are told to take paracetamol for a backache, to block whatever the cause is and keep going, it doesn’t matter if there is a physical reason that your back is struggling, or a mental one that is telling you another reason.

Whatever it is instead we are supposed to ‘toughen up’, ‘ignore it’ or ‘plough through it’… if you stop you are weak, lazy and probably letting people down.

Self ‘anything’ is not encouraged in society… you cannot miss a certain topic in school just as you hate it, even if you would happily do double of another topic you love instead.

You are made to get out of bed at a certain time, even if your body is still tired and will not be able to perform at its best in any way. Another hour asleep so you would be on top of your game is not permitted.

You are not supposed to stay at home if you don’t feel well- why else would schools give attendance awards to those that come in every day? (forgetting the fact they just spread a cold to half the class!) or work limits your ‘sick days’ so you won’t get paid.

So instead of listening to your body, we are encouraged to ‘take something to help it’ which is not healing the problem (no one is paracetamol deficient!) – instead it’s just covering the symptoms, covering ‘you’.

I could go on for ages about home education instead of schooling. I took my two youngest children out of school, when the schools’ rules and targets became more important than the child and they started to treat them worse than a prison would be able to treat a prisoner… (and no I’m not joking 😠) Or the whole capitalist society we live in and how wrong it is on so many levels…

I think many people also see their work and career as part of them, it defines them- after all society all but grades us by it (a housewife has no ranking and a brain surgeon is at the top!) 

So when someone cannot continue with their work (be it for weeks or years) for whatever reason, many people are in a void of not knowing who they are. Their life is on ‘hold’ until they are better and can go back to doing what they did before, or something equally meaningful in societies eyes.

It’s why when some people retire they get ill, or the kids leave the nest and the parents relationship breaks down. What are they now? Nothing!

It doesn't matter if you are unemployed, long term sick, unable to work, a housewife, retired or just not seeking work. They are always on the bottom of the list of 'what profession do you have' ... silently saying you are the lowest rank in society. I despise this.

But I will say what I mean by self-healing …

I just mean asking yourself what YOU need today, or even this minute. 


It may be to go and sit in the garden, to feel the sun on your face or tend to some plants (sitting down if you have to), to get a notebook and write down your feelings- release all the anger or fear on paper, to do a puzzle, to sit and drink a tea you enjoy slowly, to go back to sleep, to find a club/class/group/cafe to go to, make a meal you love, eat out, take a walk, play music, watch comedy films, do or start a hobby you've always wanted to... the list goes on and what will be right for one will be torture for another- they key is to do what you feel is good for you.

Also to be able to love and accept yourself just as you are - today, not thinking constantly what you think you should be, or what society wants you to be. 

I have red hair... it has slightly changed intensity over the years, and I now have a very few white hairs (mainly near my scars?!) ..but its still red. If, and when, it goes white, then so be it. If I chose to dye it, I may look different to others, but my hair will still be red (or white!). I could hate it and spend my life dying it every couple of weeks, or I can just embrace it's colour and texture and save myself a fortune and a lot of stress!

After all it's me and I don't see the need to cover 'me' up...

So, if you are recovering from illness, then let yourself rest and be weaker than normal. Accept your body as it is. Getting angry or frustrated that you cannot do something is not going to suddenly change it so that you can. Of course you can still have goals to push yourself another step - you don't have to accept that you will never change, just know that today you are still on that way to changing.

If instead you see your life as just doing what your body tells you, then it’s not so much on hold... you are just doing differently. Being in the moment. Looking after yourself for when you are either able to work again or find something different that you enjoy.

Problem is when you start listening to yourself... your world changes and you can never go back to blocking your feelings or emotions again.

A close up photo of my hair in sunlight.