Tomorrow for Awake Surgery.....!

All set for tomorrow's surgery...... I'm not going to lie. I had a moment. A totally chicken moment. I forgot myself. Got scared. Decided to 'take my chances'. Told the surgeon I wasn't going to bother. That I'd just go home and see what happened. What a complete wimp! It took the surgeon, a nurse, my sister, my husband, some friends and some of my Team in the Ward of Winners to remind me that wasn't the deal...... There were insults. There were tears. There was no 'leap of faith'. No bravery. No courage. No positivity. No inspiration. No keeping of promises. Just a crabbit, scared, angry witch. Throwing insults like they're going out of fashion. Shameful.

I came round. I've signed the forms and will be taken for surgery early, probably around 08.30am. It could last until late afternoon. It'll be asleep/awake/asleep. The aim being to 'poke the peas' and see what would happen. To remove any that can be safely removed. To get a better understanding of what's going on. Also to remove more of spongy if possible. So there's a lot being done. I'm likely to be exhausted afterwards, plus I'll be recovering from anaesthetic. So it's likely to be Thursday before there's any real news. And even then we won't really know..... it could take a few days to establish how I'm doing. Plus it takes a week to get pathology on what's removed.

The next stage of the journey. I know dark humour is not always appreciated, but it's hard to see past the fact that tomorrow marks the start of 'Brain Tumour Awareness Month'....... surely that's s good omen???!! Surely??!!

So how am I? Honestly? Emotional. Terrified. Tempted to make a run for it. Weak. Angry. A rollercoaster of emotions. Though I've always said the most emotional days are followed by the biggest breakthroughs. I've let it out and I'm sure there'll be more years later on when Big Man comes in. 

In terms of today's achievements, I slept all night. I was up, washed, been for a walk, have spent time chatting with another patient. A patient who shared a ham sandwich, bag of tayto cheese and onion and some sports mix...... best meal ever!! 

My poor sister has patiently sat here basically all day. Doing all the things only a sister can do. And listening to my demands and tantrums. Unquestioning as she has been for 6 weeks now. Deserving of a reward I can never begin to pay.

I'm now in a better place. Still scared but I know I have to do this. I made promises. And I trust my surgeon. She is excellent and has been honest from the start. The truths have been hard to take. She still has that important mix of 'I can do this, trust me' with the humility of 'I'm not going to do anything stupid'. She's confident but not cocky. 

This is my leap of faith. The one I knew was coming. The one where you put your faith in the medical experts. 

You guys have formed my cage around me. I need to maintain my brace position. I'm doing that. This is the next stage of the journey. It can only be good. 

We can do this. I'm going to get a good night's sleep and I'm going to go in on the first day of March 2017, the beginning of brain tumour awareness month, and I'm going to take the next stage to kicking cancer's arse. With my Support Team at my side.

❤

Another day of progress in the land of confusion.......

I continue to progress, but I continue to be completely confused....

I awoke this morning and had no idea what day it was, whether I should wake up, go to sleep, eat, take meds...... my poor sister got a random message - What an I supposed to do?? She has been nothing short of incredible. My messages range from 'get me nightshirts that button at the front', through to 'I need you here. Now' and everything in between.

She doesn't question any of it. Just does whatever I ask. She comes into hospital. She does things only a sister can do. She washes me, she takes me for walks down the corridor. She helps me rebuild Neuro pathways.

I have developed relationships with doctors and nurses who I trust. And I have been a total cow to those of that I don't trust! I have two doctors that can put a cannula in quickly. As opposed to one who took six attempts to get blood out of a vein. Needless to say 'one vein's are welcome at my bedside, six veins will never be beside me again..... Diva? Possibly. But it's important.

I had another MRI scan today. I was totally relaxed, as I was last time. Ed Sheehan on massive headphones. Just breath and ignore the noises. Easy. Though I have suggested 'Bloodstream' should be removed from the playlist...... you're having dye put into your veins.....

I lost time today but my sister orientated me regularly. She was here all day. My gorgeous son came this evening and helped me walked up the corridor. I have banned everyone else. My face is black and blue, I have a massive wound on my head (covered with tape but it's there). I say some strange things. The thought of anyone seeing me like that causes me more stress than anything I could ever imagine. Bearing in mind my biggest daily battle remains coping with epilepsy. So I need to avoid anything that causes me upset or negative feeling. For me this is often the feelings of others. It's not anyone's fault and I'm so conscious I'm probably offending family and friends. I promise that is not my intent. What I'm doing is fighting. With every inch of me. So I stick with what helps me. I continue to try and write it up, to help me understand and to help you guys understand. And also because I honestly believe there is learning in all of this for others.

I remain content that I am in the right place for the best possible healing. I am surrounded by myWard. Of Winners. An amazing group of people. All with different diagnosis. Dealing with things in different ways. But all fighting. Helping each other. Inspiring each other. All learning new Neuro pathways like bosses!

Next surgery is due on Wednesday. I'll be ready. Im confident. My surgeon is excellent. She hasn't let me down before now. If my bus comes then my house is in order. But I don't believe my bus is coming.

You remain my cage. I appreciate everything everyone has done. More than I can ever describe. I continue to fight. I continue to enjoy all the photos and Positivity Blasts, the texts, the Whatsapps, the emails. I am surrounded by the best that humankind had to offer. Be proud of yourselves. You are inspirational.

Thank you, yet again. I hope one day to write this all up properly. And to use it to help others faced with similar challenges. I feel like this is the role I have been given. I want this whole thing to be over. I can't understand why this happened to us. I'm angry with my body. But I will continue to fight with your support.

I love you ❤ I can't wait to tell you each to your faces. I will feel no shame for random hugs. From day 1 I was drawn to particular people. Some obvious, some not so obvious. What I've learnt is that those natural 'drawn to' feelings are the most real feelings you'll ever feel. Don't question them. I will never question my feelings about anyone again.

I'll see you all soon. And for those who have asked...... I remain treated wit paracetamol and ibuprofen. I am violently opposed to any opiate based drug and will not take it. No morphine. No diazepam. My feelings are repeated daily. I don't need them. I don't want them. No codeine either - it doesn't agree with me.

Religion......

I remain completely unsure about religion. I'm not saved. But I'm completely  unoffended by anyone else's belief. No real change to be honest. Since this whole thing started I have been completely inundated with religion. No-one has forced it upon me. It has actually been a great comfort to me. I'll take it all! So far I'm aware of catholic masses being said for me, candles being lit, Mormon prayer circles, Protestant Christian prayer circles, Buddhist chanting. I have prayers said daily. I have made cards. I have prayers printed out and put in cards. I have one friend who delivers "unconventional prayers " each evening. I find comfort in all of this. It's not being shoved down my throat and all the prayers I've hear so far have simply been kindness, practical good vibes, and have come from the heart.
So religion and prayers are welcome. From all religions and all denominations. Keep them coming. It's all positivity. It's all appreciated.
Thank you to those who have taken the time to pray for my family and I. That's just kindness.
Not forgetting spirituality..... crystals..... I have a piece of jasper that is giving me great comfort due to the card that came with it and the explanation.
So yes to religion, yes to spirituality, yes to all good vibes. Yes to positivity, regardless of the source.
❤🙏🏻

Fighting on....... in the Ward of Winners

im trying so hard to keep documenting this. For myself, but also for others. It's often completely inexplicable. That makes in even more important to write it down. I feel like I owe it to anyone experiencing the same. Reassurance. Understanding.
Today started badly. I couldn't waken up. I just wanted to sleep. I felt like wveryone was pressuring me..... wake up, eat, go to sleep, take your tablets....... I was crabbit. Very crabbit!

I wanted to sleep but I knew that I wasn't fighting. I knew I was breaking my promises. I was just so tired. A bit defeated if I'm honest.

I don't think I woke properly until lunchtime and only with the help of my sister. It's important to sleep. But it's also important to rebuild Neuro pathways...... you do that by eating, walking, talking, fighting. My sister helps me do all those things. Other patients also make sure I do the right things.

Today another patient gave me soup. If she hadn't I probably ouldnt have eaten until teatime. Kindness, understanding, reassurance, fight.

My sister eventually got me eating, got me up out of bed, a walk with Big Man, a wash. All the things I have to do. All the things that are so difficult. I couldn't do this without her. She is selfless.

I've still got a total aversion to certain doctors and nurses on the ward and can be a complete cow. Seems there's a yin to my yan...... Little Miss Positivity can also be a complete diva. I make demands. One doctor is nicknamed "six veins" and I won't allow her to take my blood. Another is "one vein" and he's allowed. God love these poor doctors and nurses. Patience of saints.

Medically I've had a few things happen today. I've had two facial seizures. Kind of like being tazered to the face. Not good. Possibly due to medication changes. I'm trying desperately to manage these but it's very hard. They frighten me. I feel like my body is just doing stuff and I can't stop it. I'm trying to manage then as I do with the othe epilepsy - through positive thoughts and positivity Blasts. All the photos you guys have sent me help so much.

A cold compress is the single best thing ever. I permanently have s cold cloth on my head. I'm sure I look quite mad. But it serves so many purposes. The cool stops me feeling sick. It provides comfort. When you have two black eyes and a swollen face (as I do) it reduces the swelling. It can be put over your whole face, hiding you from the world. So I am the one with the soft, wet, baby facecloth permanently on her head. And I am the one who doesn't care how nuts it looks!

I've had another CT scan this evening. Results are for my surgeon I assume. I also had an injection in my tummy to stop blood clots. I didn't want to get it. Other patients persuaded me, along with a nurse and doctor that I trust. It was vaguely unpleasant but a sensible thing to do.
My blood pressure remains low on ocassion. Always was. I try to raise it through drinking water and doing whatever the nurses tell me.

I plan to try and relax this evening. Family have brought me a portable DVD player. I'm going to try and watch a nice calm film. At 7pm I will take necessary anti epilepsyedications, have a cup of tea and toast with jam, watch my film. Then I will try to get a decent night's sleep.

Tomorrow we will do it all again.

This is tough. It's a journey. I have brought those closest to me on the journey with me. I feel awful for that. Our journeys are all slightly different, but dictated by my brain. My family and friends are nothing short of amazing. Don't give me credit. I don't deserve it. It's those around me that are doing this. Literally saving my life. Every day. Meeting my lists of ridiculous demands. Unquestioning.

Plus my medical team and my friends in the Ward of Winners. I am surrounded by experts. I am surrounded by patience. I am surrounded by fight. Courage and selflessness everywhere I look. I am not 'inspirational'....... you guys are. Completely. I document it for others. And for nyself. So I understand it if there's more to come,. S o others understand what they are going through is normal.

Thank you to all of you. For being there. For forming my cage.
I have had so many gifts I couldn't list them all, but thank you for those too .
I love you. You are saving my life. Be proud of yourselves. You are inspirational. The goodness of people.
❤

Ward of winners

Welcome to side Ward 3. The ward of winners

Four women, two men

Each with their own story.

Each on their own journey.

Each one determined.

Some have been on their journey for days, some for years.

Each appreciates support from family, friends and medical experts 

Each is part of their own Support Team

The decisions we make are often different. We are independent.

But each one of us is brave.

Each one of us is determined.

Each one of us is fighting.

A Ward of Winners.

I am proud to be in their number. 

Still fighting...... conquering Everest.....

Surgery no 1 yesterday. Back on ward by late afternoon. Fighting violently against any form of opiate based pain relief. So no morphine or fentanol. Yesterday and today I am being treated using paracetamol and ibruprophen. I have two mighty black eyes and a scar that will run up my entire scull, fro my jawline right into my head.

Part of Spongy has been removed from my right temporal lobe. Notcwll, but part. In a week or so we'll get pathology, however we already know it's malignant, probably low grade and there for years.

Every day I talso ake steroids to try and reduce steroid, anti epilepsy medication.

Since being on this rehab ward I am understanding so much more about brain injuries. I am learning how to relearn Neuro pathways. I am learning to take my time and that it can be done. I'm learning I'm not going mad and that this is the same for people with strokes, tumours and aneurysms.

Today my sister and I rebuilt a pathway that allowed me to stand up and walk. Tomorrow we will work on that further.

I have had a 'brain drain' removed. Lorerally a drain stitched into my brain...... Agony. The act only made possible by the patience and support of a doctor and a nurse who were willing to offer me reassurance and patience. Plus my sister. As ever.

My biggest valence remains eoilepsy. Absence seizures. Only managed by me through positivity Blasts. Vitally important. My surgeon actively encourages what I've been doing. So when I feel negative or scared, I look at your selfies or read your texts/ whatsapps. This stops me having an Ensure no absence seizures and keeps me safe.

Tonight I lie with my blanket of love at my feet. My Buddhist prayer blanket over my chest. I'm looking at photos you guys have sent me bad I'm thinking happy thoughts. Knowing it'll quite literally save my life.

I'm exhausted. I'm scared. But I'm fighting. The same way you're fighting for me.

I'm listening to others on the ward tell their stories and I'm remembering I'm not alone.

I love you. You are saving my life.

When this is over I will make sure that others understand. 

My husband. My sister. My surgical team. My rehab ward comrades. Saving my life.

I made you a promise.......

I believe I made you guys a promise?? That I'd fight. That your completely overwhelming love and support would drive me forward.
I always keep my promises.
I am fighting and we are winning.
I have had brain surgery #1. My amazing surgeon managed to remove some of the 'sponge'. Not all, but some.
In order to ensure I could fight I violently refused morphine. Very violently..... I am being treated with paracetamol and ibuprofen. It hurts. A lot. My eye is black and so swollen I can't see out of it. In front of my ear and right up the side of my head has been opened up. There will be nasty scars.
But I know who I am. My wonderful sister even helped me stand up and wash today. That's reforming neural pathways. It's like climbing Everest. And we did it!!
I am fighting hard, with my amazing Support Team.
As promised.
I adopted the 'brace position' and you formed the cage around me.
So starts the next stage of my cancer journey.
A fluid life, an unprectabls life, but a life.
Luckiest unlucky girl in the world.
❤

Bad akPositivity keeps coming.......!

And the positivity just keeps flowing!! I have received a massive basket of gifts from work colleagues and friends! There is so much that I would need my own room to unpack it all! At this stage if something goes wrong tomorrow I will die of embarrassment at my rudeness of not having the decency to hang around and say thank you properly......

Thank you to each and every one of you. It is completely overwhelming and so, so appreciated. Also thank you to Fi who has helped organise and taken time to get everything to the hospital via my gorgeous sister.

I remain in the same place mentally as I was earlier. I know our lives have changed forever. Cancer does that. But I remain completely confident that tomorrow begins the next stage of our journey. I believe it will be a long one...... Hobbit style......  I know our lives will be fluid and may vary month to month. I also know with certainty that I wil NEVER worry about anything ever again. I will take every day as it comes and I will be grateful for each and every day.

Life lessons. They can be unexpected. They can be rude. Take them.

I feel like the curveball came and my family/friends/colleagues/ medical team formed a cage around me.

I'll see you all soon ❤

Ready for surgery.......

I am safely camped in RVH. In a nice, calm Ward. With a group of lovely, positive people. Each has their own story but each is as surrounded by positivity as I have been.
I am wrapped in my blanket of love and am completely relaxed.
I had another MRI scan earlier. It was like being in a spa! Honestly the most relaxed I've been for over a month. You want me to lie back, with ear defenders on, close my eyes, relax and listen to Ed Sheeran?? No problem at all! Easiest thing I've had to do yet. I was a model patient.

Good news is that the results were exactly the same as my originals. So although all the tumour crap is still there (both 'spongy' and 'angry peas'), it hasn't changed. Treatment plan remains the same. Short of some sort of medical miracle, I'm happy with 'unchanged'! No more aggressive than it all was before. Still everything to play for.

Surgeon has had a good chat. Remains confident and directive with me, whilst also humble and unwilling to take any chances. A perfect mix. I trust her.

The biggest risks as this stage remain the normal surgical risks - infection etc. These have been mitigated to the best of everyone's ability. There is also some risk of memory gaps again. Well, guess what? I've had that and I've dealt with it. In a month....... fairly impressively i think, if I do say so myself! Plus I've written it all up in last night's blog, so I can remind myself if it happens again. Reassurance for myself and for my Support Team. My brain will relearn the pathways...... just give it time and don't pressure myself.

So I am ready. Surgery is scheduled for 09.30am. May be later, may take until lunchtime. I'll be asleep so unlikely to know the outcome until Thursday I'd think.

I am going in conpletely relaxed. I'm going in completely confident.
Next stage of the journey starts in the morning xxxxxxxx

Overwhelming love...... a literal blanket of love

Tomorrow morning I am due at RVH at 10.30 for a scan.  There will follow a load of pre-surgery checks etc. Hopefully I will get my bed late evening. Surgery is scheduled for Wednesday, though times are fluid.
I've tried to set up a network of communications so people will get a wee post-surgery update, however it's far from foolproof. Grapevine may be best! And remember that no news may well be good news.
I am going into surgery 100% confident. I believe this is simply the next stage of my journey. Genuinely believe that. I'm not scared. I'm keen to get it done and to move onto the next phase.
And if ever you wanted proof that I am surrounded by the most amazing people in the entire world....... members of myclose friends and family this evening sent me a blanket. They each made a bit and then stitched it together. A literal blanket of love. I have never been more overwhelmed in my entire life. Anyone on earth who tries to tell me I'm not the luckiest person ever born should check themselves for a brain tumour!! I have been surrounded by love since this started. It just keeps getting stronger.
I am excited at the prospect of waking up with that blanket of love snuggled around me.
Every last person who has supported me has been incredible. In so many different ways, but all positive.
If ever you needed reminded of the goodness of people, then remember this story. Remember the overwhelming support. The positivity Blasts, the learning to redo routine tasks, the learning to release emotions. Remenmber the literal blanket of love.
I'll let you all know the craic, but expect an updated journey stage on Wednesday.
I genuinely love every last one of you.
Overwhelmed.
❤❤❤

CLARITY! My most important post to date.......

CLARITY

I’m confident that this is the single, biggest, most important update I will give.  I’m also pretty confident it’s going to take me forever to write it up and may not make complete sense at the end…..  I will do my very, very best to be succinct and I am going to concentrate really, really hard!!  Here goes……..

Today I woke up feeling pretty good.  My sleep has improved greatly since the meds were reduced again.  I was up at my usual 7am ‘med o’clock’ and was showered and dressed by 10am.  A fast start for me these days.  I have a friend who is a beautician and is also training to be a nurse.  We had arranged for her to call this morning to take care of some practicalities (did you know gel nail polish will cancel your surgery…. Infection risk?  Important).  She very kindly called to my home on a Sunday morning, no questions asked.  Interestingly, and in yet another twist of fate that I simply cannot ignore at the moment, she is currently working with patients who have experienced some form of brain injury.  We talked.  About the brain.  About how it works and what bits do different things.  I told her how I sometimes just felt like I’d gone a bit mad.  She was completely and utterly accepting of everything I said.  I started to realise that my journey and the feelings I am experiencing might not be so unusual after all.  We talked about the ‘reset’ of the brain that often needs done after a seizure.  The necessary prescription drugs, the confusion, the having to ‘relearn’ simple tasks.  We talked about cancer.  People expect a clear, simple diagnosis.  They expect a treatment plan.  They expect their story to be the same as someone else’s.  That’s not what happens.  Your diagnosis may be complicated.  It is likely to change as new information comes in and as that new information is assessed by experts.  Your story, whilst it may have some similarities, is highly unlikely to be the same as someone else’s. 

 
My diagnosis remains a somewhat harsh one.  Malignancy.  One probably low grade tumour, invasive, large spread.  One probably higher grade, more aggressive.  Both in the brain.  Both with treatment plans, although very different treatment plans.  Both still doing their own thing, as they have been doing all along…… so both open to changing their minds about how they progress.  Bit like their good owner then, aren’t they??  Let’s clarify this again…….  Cancer in ONE PLACE.  Treatment plans.  CHOICES.  A FAR BETTER OPPORTUNITY THAN MANY PEOPLE GET.  No timescales.  A different life, a fluid life…….  A LIFE.  A slap up the face from life, but one I still feel somewhat privileged to have been given.

My biggest fear has always been being left ‘mentally fully cared for’.  The wee daftie that has no idea what’s going on.  Costing my family a fortune financially and mentally.  With no quality of life, dignity and seen as a sympathy vote for all around.  I have complete clarity around this now…….  Firstly, you can re-learn routine tasks.  It is frustrating and disorientating.  It can be difficult for others to watch and there will be days when you question everything about it.  I came home from hospital unable to tell you what day it was, how to make a cup of tea, often losing time for days on end.  Two weeks later I can lead a fairly normal day, all be it at a slow rate.  That is progress.  Major progress.  Call with me now and I will make you a cup of tea, I will tell you a good story, I might randomly ask you a slightly off the wall question or forget what I was talking about……  No big deal.  It’s taken a month in total, but I have made massive progress.  I also walk every day.  Might only be a mile, but I’ll do it.  I won’t freak out loud noises, though I might politely ask you to keep your voice down or stop flapping your arms around.

The brain can heal.  Even if I am left with gaps, I can re-learn.  I’ve already proven that, and there is medical understanding now of how to promote this type of learning.  I also have my amazing Support Team around me to help me.  And I now know that the trick is just not to rush it.  Even gaps in memory that are more to do with people etc…… (which hasn’t actually really been an issue for me to date), are not frightening to me now.  If I liked you before then I’m sure I’ll like you again once I get to know you again!!  Again, the trick is to not be rushed.  If I forget all this due to surgery, then please remind me!  It will be very reassuring for me.  Another reason I’m glad I’m writing this all down.

Full-time cared for?  Unlikely.  Just time.  Patience.  Reassurance.  Fluid attitude.  I’m not one bit scared of that now.

I know I’ve already talked briefly about physical outcomes of surgeries.  I can categorically confirm that this is not of any concern to me at all.  People overcome physical difficulties every day.  I am physically and mentally strong.  I have support and love all around me.  Priorities.  If there are physical consequences then we will deal with them if we need to.  Again, not one bit worried.

A big day of revelations, I think you’ll agree?!  Having had these massive revelations I felt the need to get some fresh air.  The Big Man and I went to a beautiful part of the world – Binevenagh.  Remember the statue that was stolen?  The story was all over the news.  If you haven’t been there then go.  http://www.bbc.co.uk/news/uk-northern-ireland-31583028 

The weather was awful, although I have found an appreciation of all types of weather that is nothing short of liberating!  Weather reminds you that you are alive.  We walked.  Not far, but we were soaked. Lovely!  We sat in the car and looked out across the beautiful scenery.  We ate the best picnic I have ever tasted in my life.  We talked about everything that has happened and how so many people just do not realise how important these small things in life are, until they get the slap up the face we have been so beautifully delivered.  We talked about the people who get the slap and ignore it.  We watched other people arrive and do much the same as us.  I wondered what their stories were.  Which ones were experiencing similar things to us?

We laughed.  We cried a tiny bit, but not too much because I don’t think either of us were actually sad.  Quite the opposite.  It’s not being dismissive.  I know things are serious, but I am not scared.  Not even slightly.  I’m impatient.  Wednesday surgery cannot come quick enough now.  Let’s get this done and move onto the next stage of the journey.

Now we are home and I fancy a nice bath.  I’m going to do what I would usually have done on a Sunday.  A nice bath, music on, skincare……  my day to be a girl.  Don’t worry, I’m not going to lock the door.  The Big Man will listen for any mad splashes!  Bearing in mind, and I know I keep saying it, but I only had one grand mal seizure…… a month ago……  yes, there’s been some weirdness since, but actually nothing life threatening.  I’m going to put on some Foy Vance perhaps…..  a lavender bath bomb…….  And I’m going to relax.  Then I am going to put on a nice pair of pyjamas from the amazing and ever growing range of beautiful pyjamas that I receive on a daily basis! (Thanks for these by the way!) I am going to rest on my bed, perhaps even read the papers.  I am going to chat with Fin and hear about his day at work.  Then I am going to try and get a full night’s sleep.

Tomorrow I am going to take some time alone.  There are some things I need to do.  I also need to pack for admission to hospital on Tuesday.  On Tuesday my gorgeous sister is going to take me to hospital where (assuming I’m not bumped for an actual emergency) I will be admitted for brain surgery number one.  On Wednesday the surgery will be carried out.  On Thursday we will see what’s next.  Calm, sensible, relaxed, ready………..

Clarity.

Hospital staff...... the best people in the world

How many times have you heard it said....... how many times have you said it yourself.......  "I hate hospitals"..........  Kind of a natural reaction in many ways.  We've all had bad experiences in hospitals.  They don't tend to be naturally 'happy places'. 

I'm not sure my recent experience changes this completely......  however.......  What I was completely struck by is that hospitals are full of the most incredible 'givers' you will ever have the good pleasure of being near.  The range of care I was given in my local hospital Rehab Ward was nothing short of extraordinary.  It wasn't just nurses.  It was domestics, porters, nurses......  so many people who were just born to carry out a role.  Each as important as the next.

I took a lot of notes while I was in hospital.  Some of those notes make no sense at all now!  Some are clear.  As per the usual rules, I won't identify people, however there are people in my hospital that did small things which were extraordinary things.  I've tried to summarise these in the table below.

How do you thank a team that literally saved your life??  Well you can't really.....  but good quality food seems like a start!  I know a wonderful person who makes healthy, natural chutneys and jams etc.  I asked her to make me up some hampers that I could share with the hospital team as a thank you.  Tracy did me proud!  Today these beautiful creations were shared with the hospital team.  They can help themselves to whatever goodies catch their fancy. 

If you fancy some honest, natural goodies then why not have a look at Greenthumb's Facebook Page.  Tracy, Jonny, Aidy and Catherine came into our lives years ago through a shared love of music.  We have been so lucky.  Good people.  Just good, good people.  I love them dearly. 

What the team did -

WHAT YOU PHYSICALLY DID	WHAT IT REPRESENTED TO ME
Saved my life.	Pretty self explanatory!  In addition though, you provided me with honesty, safety, support and understanding.  You didn't pressure me and gave me the space I needed.  You listened.  You did not patronise me, you showed me respect and you made me laugh.
You talked to me.  You cared.	It gave me a sense of 'normality'.  You were open and honest and did not judge me.  You gave me practical advice and support alongside very real emotional support.  You are a rock.
Solid, practical advice.	You reminded me that the world keeps turning and I had better be ready for what's coming next.  You gave me your time and the benefit of a sharp, practical mind.
Got me out of bed in time and made me feel safe when the Ward got a bit hairy.	The Leveller.  Sometimes you just need someone to tell you to get up, wash your hair and wise up.  I needed that.  Your accent is truly awful, your wake up calls nothing short of offensive, but both were exactly what I needed at that time.  Hearing a man's voice was also somewhat comforting at nights, from a security point of view.  Although I am fully aware that there are many female nurses in the Ward that would be a far greater physical adversary than you!
Gave me your time and genuine love.	The most amazing comfort.  Although our religious beliefs may remain different, I have found a complete respect and open mindedness.  I am happy to take prayers and have been comforted by the vast range and styles available!  You are just a good person.  You were the one I knew would come if I needed you in the night and would patiently listen to whatever nonsense came from my mouth.  Without judgement.  Just whatever I needed.
Gave me a scan.	Listened to the mad story about thinking I was being lethally injected like in The Green Mile.  Rubbed my hands while the dye went in and told me it was ok.  Accepted the madness and shared a laugh, while comforting me.
Opened my curtains and windows every morning and cleaned my room.	Hope.  Two weeks inside is a long time.  The feeling of fresh air can be amazing, especially when you're on high doses of steroids!  The feeling of fresh air every morning was amazing.  It reminded me I was still here, still fighting and that I would be ok.  One of the single most valuable things done for me on a daily basis.  You also took time to pin up my cards, making my wee home happy and giving me a positivity boost every time I looked at them.
Fed me!	Do not underestimate the power of food when you are taking steroids!  You talked to me like a normal person, fed my crazy cravings, and laughed with me about it.  You gave me normality at a time when I was struggling to think straight.
Nursing care in terms of observations, but also orientation at a time of confusion.	You always told me what you were doing.  You orientated me by telling me the time, what you were in to do, whether I should open my eyes or go back to sleep.  You always said your name and you always rubbed my hand.  The comfort of this was amazing.  I was often confused and these acts just settled me down in an amazing way.
Nursing care, talking, reassurance.	You are a total all-rounder.  You are an amazing nurse in terms of the practicalities, but you also have a lovely way of providing personal care.  The nights I knew you were on duty were the ones where I was most settled.  I knew you would come if I pressed the buzzer and I knew you would keep me safe.  I also knew I could talk to you if I was scared, even if there was no real reason behind it.  When I took the facial seizures after the meds change, I was literally terrified the first time.  You provided me with both the medical care I needed to keep me physically safe, but you also held my hand to provide me with the mental care I needed.  These things in combination make you probably the most memorable.  I hope you have had a brilliant time in New Zealand and I genuinely hope we meet for a coffee and a catch up in the future.
Doctor care - physical exams etc.	You make me laugh.  At a time when it would've been so easy to be in despair, you always made me smile.  I remembered you so clearly from my initial admission, simply because you are pretty and happy.  This was exactly what I needed at so many times.  You are a pure joy.
Nursing care - obs etc	You talked to me like I was normal.  You made me laugh and told me all the craic from the outside world.  You are a happy, upbeat, good person, who I just like!
Nursing care and advice	What a well timed kick you gave me!  And how much did I need it?  When you spoke to me I genuinely believed I was too unwell to walk outside on my own.  I'm ashamed of that now - what a drama queen.  You kicked gently, but you did kick.  I cried for what felt like hours afterwards; something I am not known to do.  But once I dried my eyes I was left like the biggest weight had been lifted.  I did not sit in another wheelchair again and I am absolutely certain that your 'tough love' message was one of the single biggest turning points for me.  You are without doubt in the job you were literally born to do.  You are right at the top of my list of people that made a difference.
Nursing care, advice and kindness	You listened and you let me cry.  I made you cry and I feel so bad for that.  You reminded me that other people have stuff going on, but they still take time to listen to my crap!  You are kind and genuine and helped me so much.  You let me get it all out of my system and you absorbed my emotion at a time when you shouldn't have had to.  You are selfless.
Practical OT advice	Reassurance that I was not going completely mad, that I can live a normal life and that I will be kept safe.  With a gentle reminder that I am still in charge of my own destiny.  Help for both my physical and mental wellbeing.
Nursing help and skincare offer	How wonderful in the middle of everything to have someone offer to look at my skin.  My obsessive, steroid driven, moisturising and serum based routine would have put any woman to shame, but I can imagine there are many who would not have been in the same position after 2 weeks in a hospital bed.  It was kind and lovely and genuine and I really appreciated the practicality of it.
Nursing care and practical advice	A solid, honest, 'let me know what you need' offer in the middle of everything.  Genuine, this is me, give me a shout.  Invaluable at a time of confusion and often fear.  No fuss, normality.  A decent down to earth leveller who I greatly appreciated.

The day I knew I'd win.......!

I am fast learning that the best days will always follow behind the biggest meltdowns.......  Last night was rough.  It was raw and emotional and exhausting.  And NEEDED!  I hate that I put the Big Man through it.  But I need to get all that emotion out in order to let the positivity back in.

Today I started slowly as usual.  That's partially due to blood sugar issues caused by the medication, and there's little I can do except monitor it and manage it as best I can.  Which I am doing.  Fin helps me measure it and is very strict with me!

The biggest thing for me today was changing my meds, in agreement with my neuro surgeon.  They don't want me in for surgery all medicated up, any more than I want to be taking medications.  It's a close balance though......  the aim is to get any existing swelling to as low a level as possible, whilst also trying to make sure epilepsy is kept under control.  Getting the mix wrong could spark more seizures.  In a massive step forward for me, my steroids were reduced today.  I am also reduced to two medication times per day only - 7am and 7pm.  In the beginning I was taking different mixes at 7am, 12 noon, 2pm and 7pm....... so twice a day is a big step forward.  The quantities are now down overall, and the spread throughout the day is also down.  That's a big step forward.  Plus there were no notable negative outcomes.  My left side is a little shaky still......  that might be a little worse, but I'm keeping an eye on it and it's not something that will finish me off!

I just felt so much more like myself today.  'Slightly drunk' Trish is still there.  But she's only very slightly drunk.  I can hold a conversation, I can remember the day/ what's going on etc.  I still write pretty much everything down in lists, but I don't actually need to refer back to them much of the time.  It's as much a security blanket now.  Plus it helps us manage all we need to do as a family.....  there are so many appointments now ahead of surgeries etc, plus we all have different things we're responsible for......  It's become more about managing our house again.....  kind of the way normal people live!

I had some wonderful visitors today.  I enjoyed their company.  I did some light housework.  I went for a walk.  I challenged myself mentally and physically.  I did it like a very close to normal person.

At one stage I would almost have believed you if you'd told me the whole thing was a big joke and had never happened......  Unfortunately I know that's not true, but I continue to be reminded of the harsh, but fortunate reality of this whole situation.....  I have malignant cancer.  Two very different issues, two very different treatment plans......  BUT TWO TREATMENT PLANS.  Two opportunities.  I do not have cancer throughout my body.  I have not been given a diagnosis that involves a timeline.  I have been given a number of steps forward.  At each stage we will see what happens and make our next decision.  Take our next step.  We get the opportunity to do that.  So many do not.  Our lives have become fluid.  Day-to-day.  Is that so bad??  I don't think so.  In fact, I thoroughly recommend it as a healthy way to live.

I am likely to become one of the most unpredictable people you know.  But also the least stressed you'll ever meet. 

I'm looking forward to spending a relatively quiet weekend with friends and family.  I'm looking forward to getting into surgery on Wednesday and getting on with the next stage in the journey.  I remain completely convinced that this is not my time.  It's been a month and those angry wee peas have been quiet as mice......  they know they can't beat Trish and the best Support Team ever gathered together! 

I am the luckiest, unlucky girl in the world.  You guys continue to provide me with the backup and positivity I need to remind me of why this is just a curveball from life.  We fight on!  And we will win.

xxxxxx

Happy One Month Anniversary!

HAPPY ANNIVERSARY!

Hard to believe that this all started one month ago today.  In some ways it's been the longest month of my life.  In other ways I feel like it's been going on for a few hours.  I cannot even begin to comprehend how my family are still functioning.

The reality at this stage is that we are all exhausted.  BUT, we are one month in and I am still here.  I am not having seizures.  I am not functioning in a completely normal way, however I am functioning.  It remains a rollercoaster, and it changes every day, but I think it is right and proper to feel a sense of achievement and satisfaction that we are one month in. 

Last night was a rough one.  However, as I am learning to accept, the meltdowns ultimately lead to the biggest advances.  I had been grand.  It had been a good day.  I'd enjoyed quality time with Fin and was tired but content.  I was in bed early.  Not sleeping, updating blog etc.  Feeling ok.  Still frustrated at the lack of mental sharpness and slightly drunk feeling, but confident it was continuing to improve. 

Then the Big Man came in to bed.  Probably near 10pm.  And I melted down.  Completely.  An emotional mess.  A full on, pity fest.  Nobody understands, you hate me, I can't put everyone through this anymore, I can't live like this....... etc etc etc.  Messy.  Unfair.  Selfish.  Completely uncontrollable.  He did what he's done from the start.  He let me get it out.  He let me cry.  He didn't judge.  He listened to words that must've ripped him to his very core, but he allowed me to get them out.

Do you know what happened after that??........  We fell asleep.  Sweet, restorative sleep.  A sleep that exhausted people need, but that can often only come with a complete release of emotion.

I'm not going to say I slept soundly all night.  I know I woke around 2/3am, but I didn't wake feeling anxious or panicked.  I woke as someone who drinks an awful lot of water and is taking heavy doses of steroids!  So I was up briefly, but in a non-eventful kind of way.

Guess when I next woke up?  Exactly 8 minutes before the Big Man's 06.30am alarm was due to go off.  Now that's a result.  A big one.  I actually woke a little excited.....  I've slept.  We've got to one month.  The first surgery is on Wednesday.  I haven't had any more seizures.  We are all over this!!

So yes, today I am celebrating.  Another step along the road to 'normal'.  A new normal maybe, but not necessarily a bad normal.  All I can see today are opportunities.  Positivity.

I have had a slow start this morning.  Through choice.  I am looking forward to various visitors throughout the day, safe in the knowledge that I am not obligated.  I have plans, but I can bow out at any time if it gets too much.  Perfect.

In consultation with the Medical Experts, we are also changing medications today.  I am VERY happy about this.  I accept I've had to take certain medications to keep me safe, but I maintain I am the world's worst drug taker.  At this stage in my life I cannot imagine every drinking alcohol again, never mind ever taking a drug, prescription or otherwise.  Not for me.  I will sicken you all with my healthy lifestyle!  As of today, my steroid intake will reduce and will be focussed on the morning.  So 7am only.  Nothing the rest of the day.  My anti epileptics will be 7am and 7pm.  It still feels a bit counterproductive to me that I am taking two drugs with very different effects at the same time in the morning.  However, I am not a medical expert and I know I need to exercise some trust.  In fairness to them, the experts have been very patient with my 'negotiating' and need to be part of my own 'care team'.  I must be driving them slightly insane at this stage.  We are working through it together, and I think that's a really healthy thing to do.  They know what the drugs do, I know how they make me feel and any resulting symptom changes.  Discussing all this together and everyone taking responsibility can only be a good thing.

So it feels like another big step forward kind of day.  Another small but massive leap along the road. 

ONE MONTH!  One month of pure madness, but still one month.  First surgery on Wednesday.  I'm actually feeling a bit impatient for it now. 

This time two weeks ago I would have struggled to make a cup of tea.  I could have literally 'lost' days in a row.  I couldn't think straight.  I was confused and scared.  Now I am able to function in a relatively normal way.  Despite having cancer and taking heavy medications.  I feel immensely positive, unbelievably lucky, and remain completely overwhelmed by the love and support of family and friends.

Happy Anniversary.  A day to celebrate!

Positivity Blast........ 'Selfie with Dog' Updates!

Yesterday I was trying to let you all know what you had done to help me in terms of 'Positivity Blasts'.  I know I talked about the 'Selfie with Dog' thing.  I maintain it makes no real medical sense, but for some reason it will literally make my night!  These are the things you guys are doing, without question, that make my life 'normal'.  These are the things that are literally saving my life.  I honestly believe that.  Even more importantly, these are just plain old fun.  Positivity in it's purest sense.  Non judgemental goodness from my incredible 'Support Team'.

So, last night I explained the 'Selfie with dog' phenomenon.  Take a photo of your dog - your view of them.  Even better, take a selfie with your dog.  The ultimate - sneak a selfie with my dog and send it when I'm not expecting it.  I'm actually quite gutted I can't share them, but I promise I won't.  They're personal from you guys and I would never do that to you.  Nothing to stop you sharing themselves in comments if you wish though.

Anyway, some absolute epics last night!  Proper, belly laughs, I cannot believe it!  I've had views of the most laid back dogs you ever saw.......  I've had a video of a child dressed as a bear (close enough and very cute)........  I've had a dear and crazy friend try to sneak a selfie with my dog, Izz, through my front room window!!  I've had the ultimate 'selfie with your dog' taken last week photo....  This one was a total winner!  I actually vaguely remember him taking it, but wasn't really too switched on at the time.  It was taken by a work colleague, and true friend, who I just adore, but who you wouldn't necessarily immediately associate with random acts of silliness.  Until now.......

Fair play to you, you are all completely brilliant!  Embracing the silly, not questioning the reasons, just firing out the Positivity Blasts.  This is why I love you.  This is why I am beating this.  This is support and true goodness, I it's purest form.

YOU ARE AMAZING!!!  I love you xxx 

A very quick thanks for the ongoing gifts too!  I've never seen so many beautiful flowers.  They arrive daily and are beautiful.  All the cards go into my notebook and I often use them as wee Positivity Blasts for myself too.

Update from today's appointments

Another big step forward again today........  more comfort from the 'routine appointments' ahead of all the 'routine brain surgery'!  More confirmation that this is the day job for many and a reminder to get over myself and put things into perspective.

So today was a heart echo.  I've known I had a murmur since I was about 18.  Very common, loads of people have them, has never caused any issues, unlikely to be any different now.  I had an ECG done last week and the echo was just another pre-surgery check.  All good to get done as it shows they are being thorough, prevents any unnecessary surprises, and I should actually be very grateful for the full MOT!

For those who are interested, it's a totally non-invasive procedure.  Kind of like an ultrasound of your neck, stomach and boob!  Results will be sent to the anaesthetist ahead of surgery.  I could hear it and had a sneaky look at the screen.....  I reckon it's spot on, although apparently I'm not qualified....... Gave the girl a laugh though.

Young Fin took me up to the City Hospital for it.  He was nothing short of perfect!  We had to drive up at 45mph (still on his 'R' plates).  This suits me very well, as I still find myself sometimes having mildly dark thoughts creeping in.....  really silly I know, and I'm managing it well now along with you guys and family support, but it can still come over me.  I find that a refusal to stress about anything, taking our time, and just generally keeping thoughts positive make my day-to-day far more normal and are lifting a lot of the brain fog.

In terms of my 'mild drunkness', again it's improved today.  My mind is still not as sharp as I'd like, but it's so much better than it has been.  I was able to be out in public with Fin and not feel like everyone was looking at me.  Honestly, I'm still not really choosing 'public'......  I don't mind a short walk near my own home if someone is with me, but I am still not really interested in seeing anyone outside my circle of people I'm comfortable with.  The big difference the past few days is that I know I can do it.....  I just choose not to for extended periods.  Small steps, but all showing I can function in the real world.  I'm not pushing myself in terms of time.  I'm confident it's something I'll continue to improve daily.

A pretty much a perfect day with Fin.  Slow, relaxed journey.  Arrived perfectly on time.  No stress.  And some real, quality time with my boy.  I've always said he was the most amazing child ever created.  I've never really taken any credit....  Big Man and I are dead on, but Fin has always been far greater the sum of any of our parts!  Just proved it further today.  Not that I needed reminding anyway.  Just lovely to get time with him. 

A healthy, happy, positive day.  Spent in the best company a girl could ever ask for. 

Yep, still winning!!