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 💖✨

What Do I Wish my Family and Friends Understood After I had Brain Surgery?

Being diagnosed with a brain tumour, only having one appointment my neurosugeon before surgery, not having any other information other than this meeting, yet being told I needed 'urgent' brain surgery and then having the operation brought forward as even more urgent... all within a month of finding out about I had a brain tumour. I had not had much time to register what was happening.

So when I left hospital (which was only 48 hours after the end of surgery) I was in shock.

I felt violated. 

Confused. 

Trying to work out 'why me'? 

Still terrified. 

Not quite believing it was over. 

Yet elated I had survived.

I felt extremely vulnerable and delicate. My head and neck felt so sore. I couldn’t lean on it, much less sleep comfortably, I needed propping up with pillows, but I could barely do it myself. I felt like a newborn. Everything felt slightly numb.

I couldn't cuddle my 9 year old son, I couldn't even have his weight on my shoulder as it hurt my head and neck so much. I desperately wanted to continue to mother him as before ... but I couldn't. I had to fix and put myself first. Not something that had happened since I started parenting.

I also had all three of my older kids taking qualifications (GCSE's, BTEC and a Degree) yet I could do nothing to support them. I knew I had to put me first. Anyone offering support for them was extremely appreciated.

Then there were the physical effects that I needed to get used to:

My vision was awful, everything was a bit blurry. Plus I felt my world was constantly spinning. I couldn't watch TV to relax as it made me nauseous, it was worse looking at a computer screen. I could manage to send a short text and that was it, I would have to stop and let the nausea subside.

After a week or so I was all but begging for the dizziness to stop, 

to be able to eat dinner and see the spoon go in a straight line to my mouth, not feel like I was eating on a fairground ride.

(I have written about the other side effects I had previously, please see The After Effects of Brain Surgery and Cerebellum Surgery Side Effects)

Household noises such as the washing machine were too much, even a games console whirring was too loud and constant. I couldn’t cope with too many people talking.

Lights also hurt, the light coming through Venetian blinds was in lines and felt like it was flashing! My brain couldn't handle any stimulation.

I spent ages with my eyes shut!

Doing anything was hard. Even walking to the toilet was tough. It hurt to move, I needed someone to walk with me.

I struggled to sit on the loo seat correctly, my body felt fuzzy and so I had to double check I was doing everything ok. Remembering to flush the loo, wash my hands and dry them seemed to be a lot to remember in order.

Trying not to wobble or trip over something, or even just navigate the corners and turning to shut the door.

Finding the right words was also hard, most of the time I could say what I felt relatively well (albeit a little slowly), but try and describe something or give instructions of any sort (where memory came into it) was awful. I knew the thoughts were in my head, I just had to access them and this wasn’t a fast response time.

I was terrified on feeling so ‘out of it’, especially when I got tired. Each time I needed to sleep I had to trust that I would be OK, and it was ‘just’ tiredness and not that I was getting ill or having a seizure or blacking out.

The first couple of nights after I came home, I made my husband just hold me as I kept dreaming of a horrid metal taste in my throat and the feeling that someone was putting a tube in it!

Waking up left me extremely groggy. It took a while for my brain to wake up, and even longer for my eyes to do the same.

I would often lie there with my eyes shut for a while after waking not even realising I hadn't opened them yet.





I wanted someone with me 24/7. To calm and reassure me when the pains were too much or I felt dizzy (I was so scared I would fall over or have a fit) … and also wanted someone to just listen.

Please just listen.

You cannot put it right or change things, 

but just listening and understanding helps SO much. 💜

It was great to see people visiting, but also, I couldn’t stay awake for too long. I needed a morning and afternoon nap (for an hour or so!) for months, if I didn’t then I felt awful and got really exhausted later.

For several days, even weeks, if I tried to do anything even as simple as ordering online shopping, going to an appointment to remove staples etc- it just wiped me out. Physically and mentally. Even months later going to one place a day was more than enough.

As I had barely been able to move off the sofa for months, my body strength and muscle mass was bad enough that even walking for a short distance was exhausting. I just had to build my strength up slowly. Very slowly!


Even months later I was still unable to think clearly, or for long:

 The brain fatigue lasts for not only for months, but years...

I finally feel I am seeing positive improvement three years after my surgery.

I am now able to stay awake for a full day and even go out for the day without having to 'pay for it' later with being extra fatigued.




Yet still, if I have got particularly tired or stressed, my brain starts to 'switch off' again.

I cannot find words, I stutter, I cannot think clearly or make decisions, and my balance and coordination goes with it.

I may act it... but... I am not drunk!!! 

Even though my surgery was in my cerebellum, it effected so many of even simple normal day to day tasks. I could barely read my own handwriting, and hardly anyone else could decipher it!

I struggled to help my son with 'school' work, I couldn't read things out loud correctly, I couldn't say them correctly either.

I felt like my brain was failing. 

I felt like a failure - to myself and my family.

And even three and a bit years later...probably the hardest thing to 'get over' is the fact that:

.

My interview with Aunty M Brain Tumours

Six months ago I had an interview with Aunty M Brain Tumours. 😊 Claire Bullimore, a brain tumor survivor in the U.K. interviewed me for her Brain Tumour stories.

Claire is a brain tumor support advocate, blogger, author, speaker, and social media guru, and also , like me, wanting to raise awareness of Brain Tumours.

Please take a look at her supportive information for others with Brain Tumours, read her story and like her Facebook page here.

I am sharing her info below:

Mother of 4 was Diagnosed with a Hemangioblastoma

 

 

Jo Barlow mother of 4 was diagnosed with a Hemangioblastoma in 2016.

After being given the frightening diagnosis that she had a Hemangioblastoma. Thankfully, after successful brain surgery, Jo is brain tumour free and there is no sign of reoccurrence.

But, that was not the end of her troubles. Jo was left with many side effects.

She decided to write her experience through a blog to share her journey with the ups and lows.

Here is Jo’s story

 

When were you diagnosed?

22^nd April 2016

How did you find out about your diagnosis?

After giving up with various appointments with the GP and only finally being referred to a neurologist on the 3^rd time of asking, the neurology appointment came through for over a month’s time. After a week or so of waiting and I was getting worse by the day, sat on the sofa unable to walk or move far, my husband called my parents who agreed to pay for me to see a private Dr as it seemed the NHS was not able to see me faster. Two minutes in the room with this consultant rheumatologist  (we thought it was possibly damaged in my neck as it started with neck pains and couldn’t turn my head etc) and him seeing me walk he suggested I needed an MRI due to a rare problem with the brain as I ‘was drunk when not drunk’. I had a private MRI 2 days later, came home and had lunch and got called back to see the doctor an hour or so later…I knew it wasn’t going to be good news!

I was sat down and I saw on his computer screen this large white lump on my MRI picture, clearly a tumour in my brain. I was told then the neuroradiologist was 99% sure it was a benign hemangioblastoma and could be removed with surgery…

What were your symptoms?

• Feeling dizzy, losing balance, walking into objects (or thinking I will) feeling like I was walking on a boat (looking drunk when sober!)
• Legs feeling wobbly and weak
• Neck pain- sharp shooting pains. Head pounding at the base of the skull. Hurting when I turned around too fast.
• Headaches gradually increasing, including them waking me at night (especially if I laid on my front or tipped my head up)
• Increased head pain and dizziness when I coughed or strained
• Tingling/numbness in my head and neck
• Squinting to focus straight, vision jolting
• Clumsy

 

‘It’s all in my head they said’

 

How are you doing now?

I had a tumour removed less than a month later on 18^th May 2016.

It’s been an interesting journey, my tumour is supposedly all out and fine, and I am not seen as having any further issues by my neurosurgeon. But I still have daily struggles – fatigue, feeling unbalanced, being uncoordinated, vision issues, a numb head, head pains and soreness, neck tightness, being able to say what I want- certainly I am not able to respond as quickly, speech issues when tired, memory, not being able to multitask now, brain fog- all made worse when I am tired. But I fully appreciate it could well have been a lot worse. It’s made me appreciate life more.

What motivates you?

Knowing I have and am still helping others, with my book, blog and facebook group

 

 

What is the toughest challenge survivors face?

Navigating medical beliefs, especially those that are not right for you and doing anything alternative – where you are just ridiculed.

Knowing that when people think you look OK on the outside they assume the inside must be OK too…

Overcoming the frustration … of needing sleep, not being able to say what you think, not being able to do things the same as before, of having to change so many plans.

What is next on your agenda?

Hopefully, reach more people and help them go through similar without so much fear, pain and anger. Showing honesty and not pretence.

You can connect with me on my Facebook Page and join my Facebook Group which is a group that is only for those with hemangioblastoma’s (or family)

 

 

My 12 yr old son is home educated, so I am always at home with him, but when I feel able to I have been updating my website and blog. Occasionally I do some art (now very much more abstract!) and also help my husband with his bands’.

I didn’t have a job to ‘go back to’, and I don’t think it would be easy to be employed knowing I have issues with so many things and they can vary by day, I never know what I will wake up to

.

Who is your personal hero or are your heroes?

Anita Moorjani – as her work got me through my craniotomy.

My neurosurgeon Timothy Jones – for the very same reason!

What would you say is the most interesting thing you’ve ever done?

I wrote a book and published it myself just 16 months after brain surgery!

My book is: ‘It’s all in my head’ 

available on Amazon – Check on Amazon

 

Any advice for people or loved ones that get daunting diagnoses?       

You can always choose how to respond- it can totally change how you view the situation. If you will remember it as a nightmare, or a challenge.

Take time to listen to what ‘you’ want and not just go with what others suggest or fear based panic.

Look at alternatives.

For loved ones – just hold the person when they need it-  and listen, help them find the answers they need.

Tell us something about yourself that people probably didn’t know… anything?

That I go to gigs almost every weekend. My husband plays the guitar and my son bass – in the same band!

It’s a good test to practice how I can always choose my feelings – I can find it too loud, irritating, panic and I cannot cope or I can sit back, relax, trust and enjoy the music

---

Conclusion

I am so grateful to Jo for sharing her story and I give a high-five for writing her story for others to benefit from. It is not easy to write a book which is so personal to a person and be so vulnerable to showing the good and the bad.

.

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