Photo memories ...

I was talking to Dave, my husband, recently about photos. That he has so many pictures of me that are totally unflattering - mainly as for some reason I tend to look as pissed as a fart in about 90% of the pictures anyone takes of me 🙄🤣 Even though I don't drink and am sometimes the only sober person in the shot, I tend to look the worst! 😬

 

He has photos of me that to many would be blackmail material ...countless double chins, or in a bikini, walking around in my undies, or bending over or some similar, not so flattering, and often rather wrinkly, angles.

 

But I just laugh at them, at me, as I honestly don't care. 

 

Why? 

 

As after this photo everything changed.

 

He took this photo of me 7 years ago today - the day before my brain surgery was due. We had just been told, that bar emergencies, I was having my surgery at noon the next day. 

 

As he took the photo, of me holding the matching fluffy toy rabbit to my 9year old son's one at home, whilst trying to type to friends online to hold me in their healing thoughts and prayers for tomorrow (it wasnt easy with vision affected by hydrocephalus); I was just sitting there wondering if this would be my last ever photo? Or maybe the last one of me ever being 'even vaguely normal' again? Would I forever be struggling, a burden to my family?

 

I was terrified. Possibly more terrified of waking up not fully with it or severely disabled and having to rely on others, than I was of not waking up at all. 

So when I woke up, while being wheeled out of the theatre 6.5 hours after entering it, seemingly intact, able to talk, then over the next day seemingly recovering as was expected, being able to walk (better than I had for months 🙏) yet still feeling as drunk as a skunk and struggling with it and the constant visual movement. All that mattered is that I had survived, plus had the hope that I would recover to something like a 'normal' life... 

 

I realised - nothing trivial mattered anymore.

 

These pictures are from the day following surgery,  the first when I was still in special care and wired up, with a drainage tube directly into my skull! But the relief is showing...along with actually looking like I struggling from having my head opened up for a few hours!! 😬😂

 

 

And with these pictures, what I did know, is how I thought I looked didn't matter one iota. 

 

It doesn't matter what others think of me, but what I think of myself and at that moment I had just love. I knew I needed to love myself, accept myself, trust myself...and life. Something I wasn't that good at doing.

 

I no longer cared if someone thought me ugly, wrinkly, grumpy, or anything... 

I knew right then I was totally unfit, looked like shit, had no energy, my face showing the trauma I'd just been through, totally at my worst... but I didn't care. 

 

I was alive. 

 

I was human and having a normal human response... So does anything else matter?

 

Many others are too scared to show their own humanity, and hide it under a veil of make up and fakeness... But why? 

 

Why do we all have to pretend? 

 

Pretend that we are skinnier, more toned, more beautiful, have the perfect pout or whatever...  just not actually being yourself. 

 

Like what the fuck is a filter about?! 🤔😂 To pretend you're 20 again? Hey, fuck it, I'm 50 next year, and I'm happy if I've got a few white hairs and wrinkles... It's better than not getting this old. My life could so easily have stopped at 42...

The last few months before these pictures were taken had shown me I could no longer pretend at all (not that I've ever dyed my hair, had my nails done or gone to a beautician!) I'd been reduced to being totally dependent on someone else to look after me, then more to save my life. (Not even able to see the mirror even if I wanted makeup. Although it would have soon been smudged all round my face from tears anyway!) What good was looking nice to please others? Absolutely fucking nothing! 

 

So, as long as no one is violating or ridiculing me ... You see what you get and post what you want. (and if you do want to ridicule, take a long look in the mirror first and work out why you feel its acceptable to laugh at others? Does it make you feel a better person as you actually feel worthless yourself? 🤔)

And yes, sometimes I do put on make up and dress up... I even have been trying to make myself fitter by going to the outside gym daily... But thats a whole different story.

7 years.

Yet it seems like it was only a year or so ago, but also forever, at the same time. 

 

Thanks again Tim 💖✨

My 10 Alternative Must Have’s for After Brain Surgery

1. Arnica homeopathy tablets

I found Arnica tablets amazing pain killers and they don't cause me any stomach issues that conventional pain killers do. The best bit is it doesn't cause side effects and you can take homeopathy alongside any other medication you need. I would suggest that you get 'permission' from the hospital to use it before your surgery as initially I was not 'allowed' it until the pharmacy checked it was OK. Just after surgery I really couldn't cope with this argument - so I just shouted at them until they allowed me to take it!😬 ... (Please note this is not the same for Herbal Arnica, which the hospital pharmacy said can interfere with medications and I definitely couldn't use)

As my vision and coordination were struggling I put a tablet in a bottle of water and took regular sips of it, but you can also take as directed. 200c is stronger than 30c, but you can often get 30c in many chemists easily - you just need to take them more often! 

2. Arnica cream. 

Putting Arnica cream on my neck an inch or so away from the scar felt like someone giving me a cooling neck massage. (You should not apply it to any wound, much less one on your head) I asked someone to rub it in about 4 x a day and again it really felt like it reduced the pain and bruising associated with surgery.

3. Homeopathy kit 

I also used remedies from a homeopathy kit, I specifically used Hypericum for the nerve damage and Phosphorus which helped with the stomach bloating, pain and nausea after anesthetic. But speak to a homeopath if you are not already using homeopathy.  

4. Ginger tea. 

Ginger Tea sorted out my dodgy stomach pain and nausea each time almost as soon as I drunk it! I had to drink Ginger several times when at home as paracetamol made me nauseous, as did looking at screens or being in a car. I just wish they had it in the hospital!

5. Manuka honey.

Manuka Honey was so soothing and healing for the after effects caused from the tube down my throat during surgery. Having a raw throat had meant it was hard to swallow …but a couple of spoonfuls of honey a few times within one day and this soreness had gone - the scratchiness and pain just disappeared. Alternatively raw honey will be healing too- just don't buy cheap processed heated honey, make sure it's raw. 

6. Pillows

A V shaped pillow, cuddly toy or small pillow were so helpful. I was given a soft toy by a friend when she found out I was ill, I only took it to hospital as my youngest son also had a cuddly toy rabbit at home and we agreed he could hug his and I would hug my similar cuddly toy so we could both get a hug when apart. 😊

But…it was amazing! When one side of my head was swollen after surgery, I could put the toy on the other side and prop myself up. Sometimes I just used the ears or thinner legs of it, other times the whole body of it. I could even just put it under my neck to one side and wedge myself straight that way. So much more practical than hospital pillows! (A small pillow or flexible travel pillow might work as well)

When I came home I used a v-pillow, again this was bliss as I could prop my head within the v – leaving the scar and sore areas not touching anything. Although I often swapped it around with a small sofa cushion or the cuddly toy so I was able to move from one supportive pillow to another as I was unable to stay still for too long without it hurting.

With Cuddly toy and iPod! The day after surgery.

7. iPod.

I needed to keep sounds out and not be distracted by all the bleeps etc, especially as the mixture of steroids and brain surgery sent me into high alert. A simple bleep sounded like an alarm clock in my brain! It also gave me something to listen to, relax to, try to meditate etc… plus drown out the awful sounds of others in the ward groaning as in pain. It seriously kept me sane! 😬 If you can manage the sounds better and don't need totally distracting then maybe ear plugs and a eye mask would be better?

8. Stretchy Clothes

You need clothes you can pull up over your hips if possible. You do not want anything going over your head, you cant even get your arms up there anyway! Nor would you want buttons if at all possible as they are really uncomfortable to lean on. I just lived in stretchy leggings , a stretchy t-shirt type vest that I could pull over my hips, and a cropped bra top that also did the same. These were comfy enough to sleep in too.

I also had a loose black wrap type cardigan that as well as keeping my shoulders warm, I could pull over my eyes and use as a face mask when I wanted to sleep, without covering my whole face. Or use it to block out the lights - which was very much needed. 

9. New Hair Comb. 

After surgery my hair was glued away from my scar, sticking up like something from a zombie movie, and I was told to gently brush the glue out. I didn't want to use an old comb with germs on near my scar and so had to get my husband to buy a new de-tangling comb and soft hair bands. If I had known I would have bought them beforehand.

10. Frankincense Oil.

I had used Frankincense oil before my surgery, but didn't use it while I was taking any medication in hospital (it was bad enough getting them to agree to my homeopathy!) and then I didn't remember to take it for a week or so after. But when I did I think of taking it again it seemed to help with my headaches and possibly even help the fluid that was in my head and neck disperse. (I had this fluid checked by my Neurosurgeon and it was not putting pressure on my brain or needing a shunt) There are growing studies to say Frankincense can help with cerebral edema, and even brain tumours. (I have a few links on my website here)

Even using it as a fragrance in the room was helpful and relaxing, you can also use it (diluted) on your skin or even take a drop of it internally. (But do check this for yourself and if it could interfere with any medication) I have found rubbing on my skin a couple of drops near my temples, and/or near my scar, can stop a headache.

Make sure you buy a good quality essential oil as some are just cheap fragrance. I used doTerra as I know they have a high safety testing, and so signed up to get it at wholesale discount. Please buy from me or buy elsewhere if you prefer. x

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.

                  

Facing Brain Surgery - Yet Hair Still Matters!

One of my (possibly totally illogical) fears when I knew I would have to have brain surgery was would they shave a large part of my head. I know hair grows back, and it really is a minor part of all that is being done, but I have always had long hair and it’s felt ‘a part of me’ for a very long time. 

Thinking you might lose it is not something I wanted to face on top of everything else, when I was already feeling extremely vulnerable and didn’t want the world to know I was having brain surgery. 

Plus my hair hides a multiple of things - and it is probably my defining feature. If it had to be done then I would just have to face it, but I remember asking on a brain tumour group if it was likely they would shave much, as I needed to know. 

As to cut it all off would be a bit like saying I was going to lose a limb - lose a big part of me - and I would need to ‘get my head around it’! Thankfully they told me that the surgeons normally just shave a small amount either side of where they will cut and minimise any hair loss.

I guess part of my fear of losing my hair was also a memory I had. Recalled vividly while wondering why I had just been called to go back to the consultant to find the results on the same afternoon I had my MRI. Terrified as to what ‘problem’ they had obviously found. 

In the drive back to the hospital I just repeatedly had a vision of me as a young child walking up the front footpath to my house with my Nan walking behind me admiring my curly red hair saying:

“Is this what I have - a brain tumour? Did she know what would happen? Why on earth did she say this? Am I really going to have my hair cut off?”

I know I was also scared I had Multiple Sclerosis or some other degenerative brain disease, but somehow inside I knew it was a tumour even then. This was going to have to happen…just like my Nan predicted…😨

I really wasn’t ready to have my hair cut off, but had looked online at ‘back cuts’ before surgery, where they all but shave the back part, near your neck (where I knew my cut would be) so I could keep the top long, this seemed bearable, but how would I predict how much of the area would be shaved in surgery? 

In the end I decided to leave it until after the operation - partly helped by feeling so ill and not sure I could face the hairdressers, let alone having to wash my hair there and bend my neck over the bowl. 

My neurosurgeon said he was planning to make a straight cut up the centre back of my head, and would leave as much of my hair as possible -  I could have a back cut after.

As it was he didn't cut a straight line, I have a bump on the centre back of my head which he said wouldn't have been the easiest place to put a plate over afterwards. So I had a S shaped scar instead, starting at my neck and going towards my right ear. 

I also didn't realise I would be getting a fair sized amount of hair removed at the front of my head - for where the drainage tube would be inserted during and after surgery.

Here are my pictures just after surgery. As you can see the surgeon only shaved a minimal amount of hair for the size of the cuts.

Just before surgery I had tied my hair up in a top knot ponytail, assuming they would leave it tied up out the way and still be able to access my head. But clearly this didn’t work as after my hair was simply a glued mess! I looked at myself and thought I looked like a witch, who knows what others thought? It certainly made me look like I had just had brain surgery! 😁

This was the attractive mess I woke to the next morning, and the back of my hair was glued together in a lump, not tied up! The glue gradually unglued itself, but not enough to brush it or even tie it up again neatly.

When I was discharged 2 days after the surgery, Dave and I were told that I could wash my hair from the next day, but he had to do so very carefully for only a short time, avoiding rubbing my head at all and using gentle shampoo. (I only use Faith in Nature shampoo - which does not have SLS as this irritates my scalp and this was brilliant) 

We were also warned that it would take a couple of attempts at washing to get all the glue out. 

What we were not told was that when Dave washed it, huge clumps of hair that they had obviously shaved during surgery would also fall out with the glue!

I had only felt up to attempting to wash it 2 days after I left hospital, even then I wasn’t able to muster the energy to lift my hands for long enough to wash it myself , was disgusted with how fake and ‘wrong’ my head felt, terrified I would damage a staple or something as I couldn't see what I was doing. 

So I sat in a shallow warm bath (I was told not to soak the scar in water) while Dave showered and washed my hair. It oddly felt like a test to see how I could cope, my husband having to nurse me, but one that I knew I wasn't allowed to fail. 

I managed a few minutes, then these clumps of hair fell out - maybe each only a few centimetres patch from where they shaved me- but my hair was well over 30 cms long! So the amount that fell out seemed extreme. Huge horrid clumps I couldn't feel. 

It felt like he was touching a wig attached to me, not my own hair. I felt sick and cried. I also hated it when Dave touched my head, I knew he was touching it, but I couldn't feel it properly. 

I kept asking him how much glue was on my scalp and he said only a little, yet I felt like I had a centimetre thick layer of papier-mâché on it. 

(It would take me another 3 weeks to find out that the main occipital nerve was cut in my neck, and my head would be staying numb) 

Plus I felt insanely dizzy, so all I managed was to sit there with my eyes mostly shut, trying to hold it all together while crying stupidly. 

After all the clumps of hair and most of the glue had fallen out, I said that was enough and Dave put a towel on my head, helped me out the bath and found me clothes. He then had to gently dry my hair while I felt I could barely stay sitting upright much less hold the hairdryer to my head. I normally dry my hair with my head upside down, but I couldn’t bend my neck from the pain, so he partly left the roots damp as I couldn’t cope with any more. 

My daughter put my hair in a plait, trying to cover as much of the scars as possible (my 9 year old hated seeing them!) And it stayed like that for a couple of days.

This picture above was taken on the 26th May, 8 days after surgery (when my neck muscles really hurt- excuse my face!)

The picture below was taken on the 30th July - 2 months after surgery

But as you can see even then the scars were hardly visible within the rest of my hair.

In the end I decided against the shaved back cut, due to my scar not being only in the centre at the back and having to shave a too bigger area. 

But several months later (even after I had got over the fact I would always have a numb side to my head) each time I touched a patch of my hair, or it got caught slightly in my handbag shoulder strap, or I moved my hair at the back.

I had this horrid sensation that I was touching a wig as my hair did not feel connected to my head. 


Plus it also triggered me far too much in being able to feel the numbness without actually touching my head. Which most of the time I couldn't now feel unless I was either in a cold wind or I touched it. 

I also had the added annoyance that I mostly tied my hair up - but if I leant on a hair clip it felt like my whole skull had a metal plate inserted in it! I hoped that if I got it cut, by the time it grew back I would have either got a bit more feeling back or just get used to this numb feeling - which I would hopefully get used to better as my hair grew again. 

I also hated the tufty bit of hair at the front of my head, which as I tied the rest of the top of my hair up- stuck out as it couldn’t be tied.

So in October 2016 - 5 months after surgery -  I got the back of my hair cut to the same length as the parts that were shaved. I simultaneously hated it (I wasn’t me!) But loved it as it did exactly what I wanted - it stopped me constantly feeling the numbness.

Two years later and my hair length is almost back where it was, although I have chosen to keep the top shorter so I don't need to tie it up - it doesn't get in my way, and I still don’t like leaning on hair clips. 

I actually measured my hair length 2 years to the day after surgery and it was 13 inches!! - apparently 12 inches is the average growth rate for 2 years. I am back to being ‘me’!

I also feel the numbness far less, I think the area I cannot feel is only a tiny bit smaller when I touch it than it was before my haircut, but I normally cannot touch my hair and feel the wig sensation. I think my body just doesn’t respond to the feelings the same now. So the haircut idea did as I wanted!😊

I also read the book ‘Do No Harm’ by Henry Marsh recently. One page which really stuck out about shaving hair was: 

“There is no evidence that the complete head shave we did in the past, which made the patients look like convicts, had any effect on infection rates, which had been the ostensible reason for doing them. I suspect the real - albeit unconscious - reason was that dehumanising the patients made it easier for the surgeons to operate.”

I am glad our surgeons now realise we are human! 💗