It's time for living again

I don't think my life will ever be the same again, I don't think I will ever think or see things the same again. I have a fear that I never had before. I have a compassion that I never had before and I have a will to live and learn that I never had before.

I am sleeping, my eyesight is almost back to normal so I can read thank goodness. My memory is still rubbish but that's not too bad, I can watch lat nights emmerdale not remembering what happened last night so not worrying about watching it twice :)

The tiredness is incredible, some days I can bounce around and not feel like I need to rest but the next day I am hit with a tiredness that all I can do is lay down and sleep. This isn't normal me but here is a read that made me understand, I've shared it with friends and family so they have an understanding of how I can feel https://www.thebraintumourcharity.org/understanding-brain-tumours/living-with-a-brain-tumour/side-effects/fatigue-and-brain-tumours/

On a good day I have started reading and getting back into my studying of natural therapies and meditation, they have both been an amazing tonic that I've been learning and using them to help me. I've also found some great facebook pages for support, now I'll be honest I'm not a massive fan of support groups but these have been so helpful with people that know how I feel on a crap day and are happy on a great day.

So here are a few things that I've discovered and created that have worked an absolute treat for me that I have also shared with others. This is what I want to do when I'm well enough to work. I want to be able to help people use natural therapies to make themselves better

If you are reading this (and I'm not just writing this for my own benefit and reading time) if this stuff helps, I am truly thrilled :)

Sleep-Inducing Facial Cream or Body Rub

Total Time: 5 minutes

This all-natural night cream is great to help you fall asleep. It also doubles as a skin health-booster if you apply it to your face and may be able to help clear up blemishes or breakouts.

INGREDIENTS:

10 drops frankincense essential oil

10 drops lavender essential oil

5 tablespoons organic coconut oil

2 teaspoons olive oil 

Small container or jar to mix the ingredients

DIRECTIONS:

Use coconut oil that’s not solid but rather soft. If need be, heat it first. Add the other oils and stir together to combine. Spread over your face and body. You may want to pat yourself off after to not allow the oil to seep into your bed sheets 

The amount I've made here is lasting me 3-4 weeks, I put a large pea amount on about an hour before bed and leave it to soak in.

I absolutely love it and don't think I'll ever bother to use shop bought products again :)

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GOLDEN MILK TURMERIC PASTE

INGREDIENTS

1/2 tsp black pepper

1 tsp ginger

1/2 tsp cinnamon

1/4 tsp salt (pink himalayan)

½ cup turmeric powder 

1 and 1/2 cups filtered, plus 1/2 cup more 

½ cup coconut oil

INSTRUCTIONS

Combine pepper, ginger, cinnamon, and salt in a small bowl. Set aside. Combine turmeric and 1 and 1/2 cups of water in a small pot, stirring constantly with a wooden spoon. Bring mixture to a very gentle simmer and add another 1/2 cup of water. Continue to stir with wooden spoon. Add mixed spices and continue to cook and stir on low for 3 minutes, until you have a thick and smooth paste.Turn off heat and add coconut oil. Continue to stir until completely smooth. To clean glass jar. Mixture will thicken as it cools. Place lid on jar after mixture has completely cooled. Give a little shake to prevent separation and store in fridge for 2-3 weeks.

NOTES

This paste should stay good in the fridge for 2-3 weeks, especially if you use a clean spoon every time you dip into it. I also like to sterilize my jar before using it. To sterilize jar: Preheat oven to 200’F. Place clean glass jar, without lid, on oven shelf for 10 minutes. Turn off oven and put lid on jar and leave in oven to cool

I drink this before bed every night, I know the flavour seems odd but I genuinely like it. I have it with warmed nut milk, my favourite is hazlenut.

The amount in this recipe is also lasting me 3-4 weeks, I keep the jar in the fridge and use a large teaspoon every evening which I warm with my milk

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I meditate every afternoon for 20-30 minutes, YouTube has got some lovely meditation videos that you can tune in to. The thing with meditation is you have to shut the world out. Put your phone on airplane mode, close the curtains and blinds, lock the door and give yourself half an hour of nothing time

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When I was still on the steroids my sleep pattern was horrendous and then for a few weeks after I really struggled. This music is for me a godsend, I put this on when I get into bed and I literally fall asleep within minutes, if I wake up I just put out on again and go straight back to sleep. Follow the link below

https://youtu.be/Y6QTdvbu0uI

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Tai Chi

I'm not allowed near the gym, so spinning is an absolute no no, so is yoga because a downward facing dog is too much pressure on my recovering brain but tai chi is absolutely lovely, gentle and makes me feel like I'm doing something. Here's another youtube video that's brilliant for a starter, skip past the chattering and the guy going for a run but the rest of it is great :)

https://youtu.be/UB_Euq9CFpk

It takes a while to go to hell and back

It's been ages since I've written on here and I'm sorry but I thought I'd take a trip to hell, I didn't bloody like it so I'm back to share the tale. I't not a pretty one!

Soooooooooo as you know (or maybe you don't) I was booked in for Amos's eviction on 20th July, on the 18th I was taken as a birthday treat to a spa evening with my girls, I loved it, Amos didn't and towards the end of the evening he kicked off BIG STYLE, seizure mark 2 was a massive show, blood spitting, getting dragged out of a car, taken to hospital by ambulance, massively failing the cognitive tests, did I know my name? Nope, Could I touch my nose? Nope, could I close my eyes? Nope, but I could stick my tongue out and laugh at nothing. Do I have any memory of that????? Not a damn thing, 3 days of complete memory loss, 3 days of not knowing anything that I said or was being said to me. I could cry about it but honestly what's the point? I could also cry about the fear I put my amazing daughters under but they were truly amazing, strong, brave young women that must have come from planet amazing because I am not amazing enough to have created them - despite what everyone tells me, I don't ever remember being that brave or strong and even penning these words brings me to tears at the fear I put them through, mothers are not supposed to do that.

Sooooooooo, the operation was done, my head has been shaved and cut open and Amos (well most of him) has been evicted I say most of him because there is a tiny bit left that will be eradicated with radiotherapy soon. I was taken from the surgery room to recovery room and woken up and greeted by my amazing girls and by my auntie and cousin, they must have cried too. I was then taken to intensive care where I spent the night listening to the bells and buzzers that an intensive care unit will have while the staff are looking after the very ill who will leave that unit with one door or another, I don't want to die in this room (or any room TBH) so I plug my headphones in and watch coronation street and love island.

I get taken to the neuro ward, now I have something important to say, I never ever, ever want to hear anything bad being said about our NHS ever again, I have never experienced kindness and care from the staff who have looked after me, they always have a smile, they always work so very very hard and they will answer the same question a million times without wanting to scream, I have no short term memory and know I am asking the same thing a million times. I have been brought gifts by strangers, I have no idea who have brought the mountainous pile of chocolates, whoever you are thankyou, they got shared around between other patients and the staff. I cannot eat 8 boxes of chocolates and fit into a mother of the bride dress and I def don't want to be the mother of the bride whilst wearing a tent!!!!! So the staff got to share them around, chocolates is the least way of saying thankyou, but it's the only thing I have right now.

I have a bowl type thing on my head, I am not attractive and I never knew I was so vain until now, I literally look like crap but I am alive so I'll just avoid mirrors for a few days. The bowl thing is removed and a very large plaster is put on my HUGE cut, OMG my head has actually been cut open WTF!!!!!!!!! At this point I also have a urine tube, I do not like it, I am soooooooo lucky that I have an amazing friend on my ward as one of my care staff, can she please please please take this tube out? With the best will in the world I do not want to show my fanny to the world but she had to see it, for that I'm sorry but she didn't care, how do these people have such compassion and kindness? I don't know but I am so proud of them.

My memory is still bloody awful but my visitors over the next few days looked scared that they might hurt me or make me tired, they all bring hugs and gifts and a little bit of time, I have amazing friends and I am so so lucky. Now I did say before the eviction that I'd stop swearing, I lied hahahahahahaha

They are ready to release me from hospital but I have to stay with a friend, I'm not allowed on my own just yet. I was lucky to have a fabulous friend who gave me a bedroom, washed for me, fed me and fussed over me. Ooohhhhhh I could get used to being pampered but after 10 days I needed a kick up the bum to get back to my own place and try to live a life around sleep, no gym, no work, no bending over (yep that's true, I'm not allowed to bend forward, it might be too much movement for my recovering brain). Two days later though I have to go back to the hospital to have the staples that are holding my head together taken out, this is my biggest fear right now, I have 39 staples holding my head together, I think it's going to hurt to take them out and I think it's going to take all morning, sooooooo my soon to be son in law (literally just about the strongest man in my life) has taken me, held my hand while it takes the doctor 5 minutes of barely no pain to remove the staples, I cried a little bit but more through relief than fear. Time for a cup of tea I think :)

The first week was really difficult, sleep was the worst, I've been on steroids for two weeks, the are to stop any swelling in my head, I mean really who wants a swollen head????? Sleep patterns are just ridiculous, waking up at 1am 3am and 5am. The 3am wake up was the one that created a shopping monster, I shopped every night for a week, I now have a wonderful collection of matching nail varnish and lipstick (if I'm going to look like crap at least do it with matching ail varnish and lipstick), a pressure king pro, I have to say I bloody love it, what a brilliant piece of kitchen equipment, a fitbit, I love that too, getting the step count up. A silver bracelet to put the fitbit in so that I'm not wearing it in a plastic bracelet. A lovely new phone cover and various other bits and bobs that I have been wanting for a while and just thought sod it.

I've had to learn some great new skills, to get dressed sitting down, put shoes and socks on by lifting my feet to me. To not overdo things, I think I can run, I can't my brain doesn't like it.

The first two weeks after the steroids I also couldn't see properly, not blind but like a fog over my eyes, I sort of knew this would go away but of course nobody can tell you that will happen for definate because it just might not. I get tired, really really tired. Sleep in the day for an hour or so and for some people this can last for years, I don't want to be one of those people, I want to be normal again. And steroids make you hungry, not just a little bit, ravenous, I could eat a horse most of the time, I've never known myself to be soooooooooo hungry, that mother of the bride dress is really going to look like a tent if this carries on!!!!!

Birthday weekend and overjoy

Strange how within a few hours your mood can change from despair to utter joy and love.

This weekend was utterly amazing, my girls, my friends and everyone around me have made this birthday probably the best ever. From surprise visits arranged by a friend and my youngest at which I screamed with joy and must have made the public around me think I was having another Amos moment. To beautiful gifts of flowers, jewellery, money and a spa trip. To a birthday BBQ bash on the beach with stunning weather, everything and everyone around me was smiling down and laughing. I don't know how possible it is for one person can be surrounded with such love, I sort of say this every year (so Facebook tells m anyway) that I am always astounded by the joy I am brought by the people around me.

Unfortunately the same joy can't be said of the benefits agencies. Now don't get me wrong when I have this moan because I know they are extraordinarily busy, and I know that there are a lot of people that shaft the system and get as much as they can, but I am not one of those people and I have had to call these damn agencies every day for the last two weeks, I have to wait for forms after forms and then some more forms because the last 4 people I spoke to haven't sent the internal forms that should have been done.  I have received duplicate letters daily from agency after agency and wonder how much their postal costs must be.Why can't this stuff all be done by one professional in one appointment and the information be taken and shared? Surely this would make the internal system easier for the staff and less stressful for the ill people (the genuinely ill people).

I'm sorry to say that I haven't tried any new things this week, my night time routine is working a treat, I haven't tried the head massage yet but I do think this will be better used to help with hair growth after the eviction and removal of the terrifying staples (OMG the thought of the head staples makes me feel vomitingly sick), anyway it seems that hair growth will be approx an inch and a half by the wedding, I hope this can be increased by head massage with coconut oil. Youtube will help with self teachings, I think that will be safer for me than letting someone else touch my poorly head. Now on this note obviously diet has been not great this last couple of days with sooooooo many birthday treats but I will climb back onto that fast moving wagon and get rid of the sugar again.

Today I have also surrendered my driving licence, definite sad face emoji but this is definitely the best way to do this as once I am allowed to drive again the quickest way to get it back will be to have to doctors certificate and I can apply and get back behind the wheel and be a normal person again :)

The magic of family

The way my girls have taken control of this situation is obviously a family trait.

As a young man my father fought for his kids, he spent 8 years fighting a system who told him he'd fail. He eventually won his children, became the first man in the country to do that. He was my first love (not I a weird way) but he was the man I looked for in other men and never found, so I'd rather be single than not have someone as wonderful as he was.

When he got ill it was my turn to take over. I fought for my him, I took over everything he couldn't do and he remained my best friend and my rock as I became his. We laughed, we cried, we struggled and we stuck together. When we lost him I lost my best friend and part of myself that will never be replaced.

Now my girls are fighting for me. They have taken over the same as I took over for my Dad, they are my rocks and my best friends, we are laughing and crying together and when I struggle to think how on earth they became the women they are, I just have to think they following my Dad.

I am eternally grateful for the best family I've had all my life and will have for the rest of my life when all of this is over.

Thanks again Dad for being part of my incredible girls

Just tears

I've just got back from the hospital and it was pretty much everything I was expecting and my reason for being scared and sick all day was right. The eviction is booked in for 20th July, it will take all day to do it. The surgeon is fantastic and got a great reputation. Amos is a grade one big bugger that means my removal scar will be huge.

I think it will take a day or two for the realism of this to sink in. I am having half of my hair shaved off, that is now an absolute and has pissed me off, honestly I am not one of those women who looks amazing with an almost bald head. I will not be allowed to travel further than my home town for 12 weeks, that is a given and has pissed me off. That means I will not be able to go to my daughters hen weekend, that hasn't pissed me off, that is devastation. I know that is ridiculous to anyone else reading this but it isn't to me. I am not even allowed to go to visit family and friends in other areas of the country. Jeez at the moment I am not happy catching the local bus!!!  I can't leave the house on my own because I'm scared of having a seizure or dizzy spell

My new business has gone down the pan, I can't work and that has been my dawning realisation and has made me feel sick, not with the loss of potential business or the loss of the hours and hours I've put in but the reputation I might have lost in the time I can't work. Ridiculous I know but I think I am allowed a ridiculous couple of days.

The things that are making me furious, not being able to go to my daughters hen weekend and her having to think about how she is going to help me have lovely hair for her wedding. That should not be her job. As a beautiful young bride her job is only to allow herself to have wonderful hair.  

Yep writing this is bringing the tears even more!!!

On the other hand I haven't had a dizzy spell (until today) for over a week, I put this down to the CBD oil which tastes disgusting but I have it before bed and with my turmeric and almond milk tea as my bedtime drink, warm the milk (half a cup) with my chopped and squiged turmeric with black pepper, once this is warmed up I pour it into the cup through an old fashioned tea strainer and add the additional hot water. Sounds disgusting? Actually it's either nicer than it sounds or i have got used to it, either way I have this almost every night before I go to bed and I sleep like a baby, well that is not waking up at 3am for a nappy change :) As I'm typing this I'm chomping on my kale crisps (homemade) and waiting for my sweet potato chips to cook in the coconut oil to cook so that I can have them with my homemade baked beans Mmmmm

I have no appetite really but I know I have to get food into me and that food has to be good natural food, this is the stuff that is going to get me to my peak and to get me through the recovery quicker than the 10 weeks the surgeon is expecting. I want to get back to life, work and normal. So bring on the kale crisps, sweet potato chips and broccoli juice :)

What an amazing weekend

I have to say that my daughters friends are utterly amazing. All the pain and screaming matches and fighting and arguments that I had with my growing up girls were worth every moment to see the incredible women that have been created. Saturday I was picked up by my youngests best friend who took me out to meet my youngest and we had a lovely afternoon with lunch, soldiers an airshow, ice cream and laughter. Sunday I was collected by my eldests best friend who took me for lunch and supermarket shopping and shockingly quickly paid for everything (against my will). The kindness of these young women is extraordinary. I am counting more blessings every day.

The CBD I feel is doing something, I am now on day 5 of no dizzy spells, I have been taking it before bed rather than daily. I have had the best nights sleep last night. Despite being woken up too early by the neighbour shouting at his child, I did actually want to open the door and tell him that waking the whole street up to tell his poor child off was unnecessary but I didn't even have pyjamas and I felt Amos would be over exposed. I did want to tell him though that he doesn't know this morning what a wonderful young man has the potential to grow in to and the shouting was probably not as necessary as he thinks it is this morning.

Anyway back to the CBD that I think might be working. I have now added a few extras to my bedtime routine and I think these are doing all the tricks,  hot almond (or hazlenut) milk with turmeric and pepper, these wash down the horrible taste of the CBD, and then to bed with frankincense oil and jasmine oil. Here we go again with some tips..............

Frankincense oil is a great stress reliever, it also apparently boosts the immune system, helps to relieve pain and inflammation and some believe it can even help to fight cancer.

I have used Jasmine oil for a long time to help with those nights when I can't get to sleep. The health benefits of Jasmine Essential Oil can be attributed to its properties as an antidepressant, antiseptic, aphrodisiac, antispasmodic and sedative. Now I don't need an aphrodisiac but I was once told that it can be as effective as valium for help with sleep.

My sleep routine is now my hot milk with turmeric and pepper, my CBD and then sleep with some 60 beats per minute music and a couple of drops of jasmine and frankincense oils on my pillow and it takes about 60 seconds for me to be knocked out to sleep.

The 60 beats per minute music is incredible for knocking you out. 60 beats per minute is the body's resting heart rate, by concentrating on the sound you are almost forcing your heart to slow down to this rate and shaboom welcome to my life - sleep. I have done this for years to make myself sleep when I think I'm worried or stressed about work or family or anything else going on and now it is a massive help with knocking Amos out and stopping him shouting in my head and squashing my brain.

Once this is all over I think I would actually like to do this stuff as a job, where do I start? No really, where do I start???  I've always loved the way of essential oils and the work they can do, changing your diet to improve health, meditation to force relaxation. Exercise to take away the pain and improve life, obviously not spinning (which I LOVE but can't do atm) but yoga and pilates and the like that can be adapted to help with people in pain and not knowing what to do about it. I sense a change of direction and a reason to really try to remember what I'm studying.

On that note, it's time to study for an hour or so.

Before I sign out though I will write down some of the fabulous meals I've cooked, Home made veggie burgers with kidney beans, carrots and garlic, home made sugar free baked beans, sweet potato chips, actually sweet potato everything is great. Lentil bolognese, I've made this for years and the trick is def to make it the day before which makes it a hundred times more delicious.

For anyone reading this (or I might just be talking to myself) I do hope you are well, I do hope you are happy, I hope that you are have a wonderful support group looking after you and I do hope that somewhere along the line my words are helping you. I don't know if you are able to message me through this page but if you want to share any thoughts with me (not rude ones, not just yet anyway I prob couldn't cope) Please, please feel free to drop me a line

Dizzy days but that's not what it's all about

ATM the worst thing about all this is the dizziness, one minute I'm fine and normal the next dizziness and feeling sick, apparently from the anti seizure tablets but they are almost worse than the Amos moments, at least he only lasts half an hour and he makes me laugh - well OK that's not strictly true, he made me laugh after when I was being stupid.

I've started taking the CBD, the first time I felt urgh and spent the afternoon sleeping,now TBH I don't know if that was from the cold I've got, the CBD or if that was the tablets so I've decided to take it before bed, I've woken up feeling brilliant so hopefully this is the way it will work for me - that is ongoing.

I've had the fear this week, the fear of having staples in my head mostly and how much of my hair will be shaved, so I will need a new hairstyle/cut, after all the mother of the bride can't go to her daughters hen weekend with half a shaved head eh?!

My memory is bonkers, forgetting what you're talking about part way through a conversation is literally making me look ridiculous, constantly apologising for forgetting what I'm saying. I asked my daughter yesterday if my memory is worse, she used this as an excuse for saying "we've been telling you for ages that we've told you stuff and you say no we haven't". Thank God I can laugh about this, possibly not the best time to decide to get into some studying, I'm going to get through the exams online (with my notes in front of me) and then forget what I've done, oops. I'll probably have to redo them when this is all over. So much for me studying so I don't go bonkers - too late. But the course I'm doing are on naturopathy and meditation so restudying them won't be the end of the world and the meditation can only do me good, definitely better to do before bed than watching orange is the new black or emmerdale.

I've made my list of questions for the consultant next week
How big will the cut in my head be?
Will all my hair be shaved off?
How long will I have to take the dizzy tablets for?
How long will it take for my brain to go back into it's space that it's been shoved out of?
Will my memory, hearing and eyesight improve?
Do I get put to sleep for the operation? - This is a massive issue as someone thought it would be a good idea to tell me that often they do this operation while the patient is awake NO NO NO NO put me to bloody sleep FFS

My diet has been pretty good this week apart from birthday cake and ice cream, now here's a thing re the ice cream, I love it, I can't drink wine or gin and I love that too so I refuse to give up ice cream!

I'm looking into coconut oil and it's benefits for meningiomas, now I've been using coconut oil for a long time, to cook, to put in my coffee and to use to clean my make up off and I love it. The Thais apparently call it the beauty oil because of it's fantastic benefits to the skin but I am going to look into it's real health benefits and could it really shrink Amos? So far my research has said of the symptoms of meningiomas could be, memory, vision problems, memory loss, hearing problems, memory loss, seizures and memory loss. Well thats bloody marvelous because I actually have them all especially the memory loss. Apparently if I can find someone who wants to massage the coconut oil into my scalp - a nice indian head massage with coconut oil, will have an Amos shrinking effect, sounds brilliant, I just need to find someone who wants to give me a free head massage!!! This will also have a massive benefit to regrow my hair after the eviction, be a great calmer for one of my stressy days, apparently will improve concentration, hahaha that sounds exactly what I need, and will improve circulation, cleansing the blood and the lymphatic system. So in the event of not finding a free daily head massager youtube searching it is to teach myself to massage my own head as I really can't afford a daily head massage with a professional. Isn't it funny that when looking for something like that on youtube I want to look for a woman teaching me, when I break my phone I only look for a man to fix it, we really are gender specific