Epilepsy information

We appear to have the seizure risk under control again, but I’ve attached some First Aid info for any friends/family interested. 

A good thing to get these stopped again, clearly....... but unfortunately I can’t help feeling I’ve sacrificed some ‘sharpness’ in the process. That bit isn’t so good, and sometimes it’s difficult to decide which is the lesser of two evils. I want to live a long life that doesn't involve taking seizures...... but I don’t want to constantly feel ‘dulled down’ and a bit stoned. We’re spending the next few weeks resting up and also trying to patiently work with medication mixes, in order to try and get the balance. All a bit scary and frustrating, but we’ll get there I know..... 

The radiator at the end of the line.....

You know the radiator in your house that’s at the end of the line?.......the one that’s always a wee tiny bit cooler, no matter how many times you bleed it??.......... I feel like that radiator. It’s very frustrating........

If I lived in Belfast my treatment would be quicker and more efficient. It shouldn’t be a postcode lottery....... unfortunately it is, and the north coast is right at the end of the line....... by the time word gets up here, there are so many air pockets, it’s amazing the heating is even on........

As things currently stand, my seizure threshold has lowered due to changes in medications, a sinus infection and from pushing myself a bit too hard.........  

I completely accept I have personal responsibility around some of this, but I also feel it is deeply unfair that I cannot get the same speed and therefore quality of treatment as someone who lives closer to Belfast would get.........

My epilepsy medications need adjusted, as do my steroids. As ever, my ‘multi disciplinary team’ in Belfast are nowhere to be found. Not returning phone calls, passing decisions from one department to the next........

Getting meds changed has involved conversations between at least half a dozen people........  In order to get my anti seizure meds upped today, I am aware of conversations involving (at least!) - at least two different nurses from two different charities , two different ‘dedicated’ oncology specialist nurses, an epilepsy nurse, a neurologist and a GP...... minimum seven people that I’m aware of........ 

It’s like Chinese whispers....... and instills very little confidence in the system. It all also takes time. As a result, I’ve been left waiting days for someone to make a decision (which thankfully a local GP has finally done). During this time my medications remain wrong ..... increasing my seizure risk, leaving me tired, confused, scared and upset.........

I am also having absence seizures where I literally ‘lose time’. It’s disorientating, unsettling, upsetting....... Not to mention the anxiety and position it puts on those around me...........

It’s not right and I’m willing to admit it’s had a negative impact on me that I’ve had to fight very hard through. And still am. Thankfully, as ever, I have huge support from family and friends........

I am combining this with determination and positivity. As of now, I’m resting up. I’m going easy on myself. Thanks to a GP, willing to make a decision, I can now start to get my medications fixed........but it’s taken extra days that it shouldn’t have taken. Putting me at additional risk......

I am on a break over Easter and, thanks to yet more serendipitous timing, hubby is off at the right time too. The next few weeks are about getting medications fixed, resting, and getting myself back on track. Removing the air bubbles and getting the radiator working properly. It shouldn’t take good timing and people going above and beyond...... but I’ll take whatever I have to take to stay well......

My diagnosis and prognosis remain unchanged. I can live with this. I WILL live with this. For many years. It is not my time and I will not let you down. Xxx

Carpe Diem.......

‘Seize the day’....... 

Been doing a lot of that of late. Living life. Enjoying myself. Refusing to be beaten. 

I have been gently back at work. Limited hours and with lots of risk assessing and breaks etc. Management and colleagues have been nothing short of wonderful. 

So many have willingly learnt a bit more about my condition, and happily ‘babysit ’ me, letting me sit in their office so I’m always safe with other people around me. Unfortunately, despite anti seizure medication, I now live with epilepsy, and there is always a small risk of a seizure. For this reason I cannot be in an office alone at work. Fair enough. We have Risk Assessments and an amazing list of volunteer ‘health buddies’....... I have been completely humbled and grateful to colleagues willing to have me sit in their office without totally freaking out at the thought that I may randomly start having a seizure! 

In reality this is highly unlikely to happen. In 15 months I’ve had half a dozen such incidents. But it can happen and I’ve been completely in awe of the number of people who take that in their stride. ‘What do we do if it happens? Dead on. Yep, sit in with us.’

By working together with me, the organisation gets to keep a staff member who wants to work and who can still add value. And I get to maintain a life where I still have some independence but where I’m not being patronised or treated like I have nothing to contribute. 

I still love my job and I want to work. I have limitations, but we are working through them and it’s been great! I’ve been working reduced hours, safely with others around me. Very much moving forwards and feeling very content.

I’ve also been doing more outside of work. I’ve attended a few gigs...... nothing too noisy or busy, but it’s been nice to have that bit of our lives back a bit too. I’ve been spending time with friends.

Realistically I can live with this tumour for decades........ it has to be a life worth living! 

So I’ve been hugely positive and very much living and loving life! 

I’m willing to accept I got a bit carried away........ particularly over the past week with birthday celebrations and preparing for some lovely time off and a  rest over Easter.......

Plus I picked up a sinus infection. I suspect it’s been working for a while, but I thought it’d sort itself out.

Unfortunately last night the sinus infection, doing a bit too much and birthday excitement all merged together......I was shattered so I duly warned hubby I was feeling a bit ‘off’ and went to bed early. Sensible. We both expected I’d fall asleep early and wake up today feeling a bit better again.

I went to bed early but then came over very weird...... I knew what was coming..... unfortunately hubby was in the other room when the first seizure struck........  It was a small one....... I was conscious but not in control of my muscles....... twitching, particularly in my face....... The same as has happened to me before, but this was only the second time outside a hospital environment.  

It’s difficult to explain the fear that comes with an incident like this. Despite me knowing  this is going to be part of my life with a brain tumour, and despite having experienced it before, there is little doubt that a seizure is a horrible thing to go through. Particularly alone........

Although I wasn’t alone for long. Poor hubby got the trauma of me banging on the glass panelled door into our kitchen....... having crawled up the hall like something out of ‘The Ring’........  Then he got to dry my tears as i cried like a baby over the whole sorry affair. 

Doctor on Call cautioned against doing too much, but was content it was a minor seizure and I was all ok.

Back to bed. In terms of energy expended, having a seizure is equivalent to running a marathon apparently. I’ve never run a marathon, but I can definitely confirm the pure exhaustion resulting from a seizure.

Hubby came in and sat with me so I’d feel more secure. Then the poor guy got  to watch me do it all again an hour later....... This time he rang an ambulance. We know this isn’t really necessary with these small seizures. They last 3-4 mins at most and my biggest danger is probably from potential falls rather than the seizure itself. 

But I can completely understand why a witness would instinctively ring ’999’.

So what was the outcome? Where do we stand now? Reality is that absolutely nothing has changed....... I have been fighting a sinus infection, I've done a bit too much and I didn’t speak up in time......  I had two small seizures as a result. I am now on antibiotics, have learnt a valuable lesson and am reminded that my husband is a complete saint.

I have to be able to have a life. The support of my friends, colleagues and particularly family, allows me to do this.

I remain absolutely certain that the right attitude will be what carries us through this whole thing and keep me alive and well for many years to come.

But I have to work really hard at slowing myself down and not pushing too hard. 

Equally, I cannot sit around all day, waiting for disaster. My mental state of mind is as important as my physical...... the two are intrinsically linked.

Yesterday was my birthday. 43 years young. I have been building up to it for a week! Looking forward to some fun plans and also about to take some quality extended time off with hubby over Easter.  I got carried away and I didn’t look after myself well enough.

Moving forwards? We’ve put some extra safety measures in place at home. I have had a good cry and let myself be thoroughly pissed off at the setback. We have brushed ourselves off and picked ourselves up. We have reminded ourselves that I may have the odd seizure, particularly if I get run down and/or over tired.

In the short term, I am working on getting this infection lifted and am resting up. 

Longer term I’m continuing to work hard on my mental and physical fitness levels. But I’m not being a hero......... if I’m tired, I will rest up. Equally I am not lying down every day and waiting for disasters. I will remain determined and I will gently push...... but in a safe and sensible way.

Now we go back to living a happy, positive life. Everything is really the same as it was before. I am living with this thing. Like so many others. I am doing it with the love and support of an incredible group of people. 

We are winning. Living with........ xxx

Birthdays, friends, fundraising, living life.......

What a week!! Where to start??.......

I’m back at work in a phased way. Excited to be contributing in an unpressured way. Adding value and letting me keep some sense of myself. Hugely supported and hugely grateful to wonderful bosses. Common sense approach ensuring the best for everyone concerned. Even getting ready to deliver a TEDTalk on Challenge. 

I celebrate my 43rd birthday tomorrow. Good for me!! Alive, as healthy as can be hoped for currently, happy, positive, and very much moving life forwards in a positive way.

I remain hugely positive and immensely happy with my life. Of course I wish I didn’t have the brain tumour...... but I remain determined to not let it win. And as ever, my Support Team are keeping me held up as needed.

After a wonderful meal out with beautiful friends last night, I have enjoyed my best nights sleep in months. I’ve awoken with a stinking cold, painfully swollen lower legs/feet (presumably from lying so still while sleeping so soundly for once!) I have received beautiful birthday gifts, but more importantly, am continuing to enjoy a happy and fulfilled life with my amazing family and friends.

My next scan date came in........ 26 April........ it’s good timing. Long enough away to allow me get my head ready mentally, but not too close to my sister’s wedding date to have it hanging over us. Still hoping for a miracle, but I’ll settle for a ‘no change’ quite happily.

I am here. Very much alive. Very much living and loving life. Be happy with me. Enjoy life...... it’s very precious.

And finally....... don’t forget to put your hand in your pocket for Macmillan...... thanks xxx

https://www.justgiving.com/fundraising/triciafest

Macmillan Fundraising update

We had set up a Just Giving fundraising page for the planned charity rock gig in May. It’s grown somewhat........ There are now four linked events! I’ve deliberately kept it on one page as this allows all the money to go back to the local Macmillan Team in Causeway that saved my life.

https://www.justgiving.com/fundraising/triciafest

We now have four associated events!

TriciaFest, Vicky & Andy’s Wedding Gift Donations, Work Coffee morning & Warren York’s Fast

All in aid of Macmillan.

The story? Triciabigbrain.blogspot.co.uk

Event #1 -  Charity Rock Night

The Diamond Rock Club

Saturday 26th May

Public event, open to all

featuring :-

Fragment (Classic Rock covers band)

Trucker Diablo

Nasa Assassin

Gasoline Outlaws

Lo Major

Gig and Belfast beer bus tickets available from www.wegottickets.com

For those who can’t attend the gig or it’s not your thing, but who still want to donate, hit us up here! 

Event #2 -The extra twist! -

My sister and her fiancé have amazingly generously decided to get married earlier in the day and have asked for no wedding presents, rather donations to Macmillan. For ease, we’re going to capture all the donations via one page, be they wedding gifts or Triciafest donations. One family, one story, one massive push for Macmillan!

Private event - invite only 

Event #3 - PLUS we now have a work coffee morning tagging onto the page!

Private event - invite only

Event #4 - And my mate Warren York is doing a sponsored fast.

Not really an ‘event’ as such. Just send him your support!

Give to any of the above four ‘events’  here......... 

https://www.justgiving.com/fundraising/triciafest

Thank you. You guys rock!! Xxx

New life.......

Our life of ‘living with’ my brain tumour is very much taking shape now. My biggest challenge is now ensuring I don’t go off like the hare! Tortoise, tortoise, tortoise...... Thankfully I have family and friends keeping me in check.

I have been very busy the past few weeks. Probably too much so. I’ve been tired as a result and a bit of sporadic anxiety was starting to creep back in. 

So the last week has been spent taking some control of that again. I’m meditating daily again and am back out trying to get daily walks. I’m trying to watch my diet again and am re-enforcing my evening ‘tech curfew’.

I am back at work. In a slightly limited capacity, with reduced hours, but still adding value to the organisation. The support has been fantastic. I am not allowed to work in an office alone due to the seizure risk. This is sensible for everyone. Thankfully a number of people have been willing to become ‘buddies’ to me........ I have spoken to them about my condition, explained any seizure risk, what it would look like, what they should do etc. We are arranging additional first aid training for them, specifically for dealing with epileptic seizures. These wonderful colleagues have agreed to take part in this, look out for me, and we have simple systems in place whereby I always check in etc. It keeps me safe but also allows me independence to work. The willingness to help me has been humbling and heart warming. I am hugely grateful to the group of people who’ve readily stepped up. 

I also now have a ‘safe space’ in work. A quiet place. This is invaluable to me and I am currently making it a place of relaxation and peace. My haven. There is little doubt that a full day at work exhausts me. My ‘safe space’ not only gives me somewhere to go if I feel unwell, but also gives me somewhere I can go to just chill out and take a break for half an hour. Even knowing it’s there has resulted in any anxiety levels reducing. I check in with someone so everyone knows I’m safe, but I can take some time out alone. I’m currently making this space my haven...... with books and a blanket, a comfy cushion...... Little things, but really big things to me.

I continue to use any days off and free time to spend quality time with family and friends. I try to do a weekly adventure with my dad and am thoroughly enjoying drives and walks and meals out with my husband and friends. We are happy and we are enjoying life. 

This weekend i am loving having my sister and brother in law over visiting. I had read about an idea whereby people paint and decorate stones at the beach. You hide them and take photos that you post to your Facebook page. Friends can then go and look for them and post photos back to you. It’s really for kids....... I think....... or maybe it’s just for people who want to smile. My sister and I hid some in Portballintrae today. It was absolutely freezing, so I can only apologise for the lack of creativity....... we couldn’t feel our hands and,for want of a better expression, “the snotters were tripping us!!” But please feel free to go looking for them if you’re in the area! Next time we do it we have decided to pick a warm, sunny day!! 

Life remains good. We’re making our adjustments and we are not letting this thing drag us down. 

As ever, completely grateful to and in love with my Support Team. 15 months on, and still an ever growing team of people around me. Believing in me. Supporting me. Patiently holding me up. 

Xxx

Being inspired and enjoying life.....

Sunday’s seizure was a bit of a mental setback..... not a huge one, but I’d be lying if I said it didn’t frustrate me and leave me with a bit of anxiety. It’s left me with a wee niggle..... the odd sped up heart rate. I know it’s not really justified, but it’s taking hard work to shake it off completely. 

In reality, i know it was a good reminder, and is allowing us to ensure I’m kept as safe as I possibly can be. It’s all part of moving life forwards and living with my condition. That can only be good, but sometimes I get a bit chicken about it all. Which is silly, really. Far better to be aware and have plans in place. 

The facts are very simple. I am living with a brain tumour. I’m very far from being the only one....... in fact in the past week, I have spoken to family members of three others in a similar position. One was given 3 years to live...... 7 years ago. One has been successfully working through things for the past 3 years. Another lives with weekly seizures but keeps otherwise very well. Today I met a young boy who’s living with bone cancer. He underwent 10 chemotherapy cycles and is braver and more inspirational than I could ever even pretend to come close to being. A true champ. 

There are so many people....... so many heroes. We don’t realise. One in two people are now believed to be diagnosed with cancer in Northern Ireland. Half of us.  

Being a stat still sucks, but I know I’m fortunate and I am hugely grateful for many things. We are living with....... all doing well....... all alive and living a life. My reality is a good one...... I am in a monitoring schedule. My scan results have been good to date. The next one should be around May time. If results remain unchanged then I’ll live the same life as many other cancer patients...... scan, hopefully good results, longer wait for next scan........ 

In 15 months I’ve had less than 5 seizures. The initial ‘big one’, a grand mal, has never been repeated and is very unlikely to be due to surgery removing so much of the tumour. I’ve had 4 or 5 smaller seizures. These have been directly linked to medication changes, with the exception of Sunday when a temperature spike  due to a sinus infection was the cause. I can understand that having a potentially epileptic friend/family member/work colleague is a big responsibility to put onto people. To provide some genuine reassurance to others, and to try and ensure I’m kept safe and also not putting undue pressure on others, I am gathering together information for you guys. It’ll mean everyone knows what to do should anything happen. I say this with the massive caveats that a seizure is very unlikely to happen, if it did it’d only last a couple of minutes, I’ll know it’s coming and will pre-warn you, and it won’t do me any harm so long as I’m somewhere safe (which I’ll make sure I am). I promise I am taking personal responsibility but I’m also very sympathetic and apologetic for any worry it causes to anyone around me. 

I know that the risk of me having a seizure impacts on others..... friends, family, work colleagues...... putting things in context, I don’t regularly have them, I’m on medication that works, and there is absolutely no reason why this won’t continue to be the case moving forwards. However, I am gathering together information for anyone who might spend time alone with me. For everyone’s reassurance. I’ve already got lots of things in place and plenty more ideas....... there are great things you can do with your iPhone in terms of medical IDs and alarms etc. Epilepsy Action have some amazing resources, and I have other stuff planned too. I’m hoping that I may be able to pave the way a bit for others and I’m grateful to others for ‘learning’ with me. This is particularly true of work colleagues. The fact is that I’m potentially a bit of a risk to them..... and they’ve been wonderful at working with me to mitigate any risk. They could’ve just told me they couldn’t accommodate me and I’d have been forced to medical off. Which isn’t what I want. Instead, we are all working together to ensure I’m safe, they’re covered, and no-one is put into an unfair position. We’re taking our time and doing it right. 

As a result, I took yesterday and today off work completely. I’m back in on Monday to sort a few details out. It’s a bit frustrating, but it’s necessary and will be worth it. I made the most of the few days......... with plenty of family time.  Yesterday I spent a wonderful few hours with a childhood friend and her parents. We reminisced about times spent as 7 year olds....... right through to our teenage years. It was heart warming and fun, and I thoroughly enjoyed it. Today was spent with my dear, old dad. We enjoyed a beautiful spring day, with a promenade walk, coastal drive, lunch out and a trip into town. And to finish my day off perfectly, my in laws arrived for a cuppa not long after I got home this afternoon. I now find myself exhausted, but content and looking forward to a deep sleep tonight! 

Life remains good. Challenges remain achievable with the ongoing support of family and friends. Each passing day, and each new challenge conquered reminds me of how fortunate I am. Hopefully my experience is/will make things easier for others. All learning together.  Living with....... xx

Living with........

Thank you to everyone who was concerned about my wee seizure on Sunday....... I’ve been inundated with messages, and it’s appreciated. Though not necessary...... I am fine. A bit of a flu /bug/ cold type thing, but I’ve learnt Sunday’s lesson and am being careful. I’m paying attention to how I feel, speaking up if I feel odd, keeping an eye on my temperature and making sure I take paracetamol every 4 hours. 

Yesterday I went ahead up to work in Belfast as planned. I know, I know, I know......... but it was an important day for me in terms of moving forwards. I’ve had 14 months of really fighting hard, but the phenytoin toxicity was making daily life a bit like wading through treacle. I covered it as best I could and friends and family pulled me through, but it took getting that drug out of my system for me to be able to start feeling any way normal again. Now I finally feel back to myself! The infection I currently have is a bit crap, but it’s really no different to having a cold or flu at any other time........ we’ve just had to get used to the added threat from seizures etc. That’s unfortunately just going to be one of those things that we now live with. 

Yesterday was a bit of a symbolic work day for me. I cleared out my desk in Belfast. I loved working up there, but it’s no longer an option for me. I can’t drive (and Sunday puts my ‘one year’ timer back to zero) and, even if I could, I’m not sure that’s the life I want anymore. I was given an exciting project to work on. I was able to spend time with colleagues (and friends) who have constantly checked in with me over the last 14 months. Thankfully I have supportive bosses in a supportive organisation, who recognise the value I can still add. I won’t let them down and am excited about getting involved in a project I can work on from my local station. Allowing me to add value, but in a less pressurised way. I’m delighted by the faith that continues to be shown in me and the unwavering support. Though, I guess somewhat arrogantly, I also believe I deserve it!! I’ve never ‘swung the lead’. I have been accommodated, but in line with HR policies and in return for hard work. It’s a win/win for everyone and I’m really glad systems haven’t let me down, as I know they sometimes can. 

In order to reassure family that I wouldn’t jump back in feet first and forget to be the tortoise, I promised that I would take today off on annual leave, to ensure I didn’t do too much, especially as I’m still on antibiotics. It was a good plan! I spent the morning today enjoying the company of my dear, old Dad. A thing those of us lucky enough to still have our dads  with us, don’t do enough. We had breakfast together, went round a few shops. Very leisurely, no pressure, no rush....... We chatted and we enjoyed each other’s company and it was lovely. 

This afternoon I had a long soak in the bath. Don’t worry...... of course I was careful!! No chances taken and I ‘checked in’ with hubby before and after so he knew I was safe. It was so good to soak my painful muscles...... my GP explained to me this morning that my muscles are sore after the seizure on Sunday because I may as well have run into a gym and bench pressed heavy weights from nothing! I hadn’t really thought of it like that, but I guess it makes sense....... of course my muscles are sore, they were uncontrollably tensed up like I was being tasered! A nice bath has helped.

Tomorrow I have the perfect mix of a gentle morning with friends (plus a haircut........ ‘the Jamie Lee Curtis’ has proven very popular, and I’ll admit to enjoying having a new look!), followed by an afternoon at work.

All these things are steps forward........ learning to live with..........LIVE WITH! 14 months on, here I am........ LIVING! Happily!! Yesterday I spoke to someone who has a family member that’s been living with similar for 7 years (he was originally given no more than 3......!) There have been so many points along the way where things could’ve gone against us. A simple turn of events could’ve led to very different outcomes. I know it still could, but I don’t feel like it will....... Thankfully it hasn’t been, and isn’t, my time. Seems people are happy with that! And I know I am. Still feeling nothing but love, support, encouragement and happiness. Living and loving life! Xxx

More challenge......

As we’ve learnt over the past 14 months, it’s nothing without a wee extra challenge every so often........

The past few days I’d been feeling very slightly off colour. Very slightly. Headache, sinus pain, slightly dodgy tummy....... nothing to write home about. Yesterday I was particularly tired and a bit more ‘hazy’ than usual. No big deal.

This morning I woke ridiculously early as usual and felt really weird...... I had ringing in one ear, sinuses killing me, and very dizzy when I tried to get out of bed. Thankfully, hubby was here and very understanding when I woke him at 5.15am to tell him I felt a bit ‘vulnerable to seizure’....... 

The inevitable struck at around 06.40am........ I had a small seizure...... lasting no more than 3 or 4 minutes. It consisted of a bit of twitching and arm flinging. I was conscious. Scared and freaked out, but safely lying on my own bed, with hubby ensuring I was in the recovery position etc. Unpleasant, but not life threatening.  He rang 999 and I was fully conscious and talking again before they arrived (although they were very quick as ever).

The shortened version of the story is this........ I’ve got a bug. A sinus and ear infection...... there’s loads going round at the moment. It gave me a very high temperature spike (39 degrees when paramedics measured it). Any mummy knows that a high temperature can cause a small seizure/ strangeness in a child......... its the same for an adult with epilepsy.......... The temperature spike caused me to have the small seizure. If I’d woken up and taken Calpol I’d probably have been fine haha.

As usual, Causeway Hospital became my haven and I was greeted into A&E like an old friend. Treated like a wee princess as ever. Lots of kind words, smiles and reassurances, on top of thorough medical care.  These guys are my heroes...... both in A&E, and in the Rehab Ward.  Today one of the first faces I saw was one of my former Rehab Ward nurses...... she’d literally just moved to A&E today and we laughed at me being her first patient! Can’t get away from me!!

Anyway, ‘my team’ kept drama levels low and set to work checking me over. The result? A bug and sinus/ ear infection. We got my temperature down and I started feeling better. 

Full bloods, chest x-ray, urine etc..... all fine. IV fluids, IV antibiotic, and home with a week’s supply. I was on my sofa, eating a bacon butty and lamenting my sorely bitten tongue by early afternoon. Sorted. Drama over. Rest of the day spent chilling out. Temperature being regularly checked (with the thermometer issued when I was in chemo), and kept in check with paracetamol. All under control. 

Having had time to digest and talk it over etc, I now realise yet again how fortuitously things went today....... my condition means I will always be at risk of taking a seizure. I generally don’t due to medication, but an infection / temperature spike etc can always leave me vulnerable. That’s my life now. It’s the same for many, particularly anyone who lives with epilepsy. The fact is that a small seizure will not do me much harm. It’ll leave me tired, but the bigger risk is from a fall or accident. Today’s experience was a wee reminder..... firstly to listen and speak up when I know I’m vulnerable. I left if too late to say this morning as I thought it would pass, although in hindsight the pre warning was clear.  A small seizure was bound to happen outside of a hospital environment at some stage...... today’s happened at home, lying on my bed, hubby by my side, and a quiet Sunday morning A&E! 

This is more ‘learning to live with’stuff..... and yet again I find myself hugely fortunate in timings and people at my side etc. Moving forwards we now know to have emergency plans in place just in case....... Nothing dramatic. Just emergency ‘places of safety’ and agreed ‘who’s contacted how / when’ stuff for both home alone and when at work/out with friends etc. Mostly it’s basic awareness raising so people know what to do when I speak up! It’s unlikely to need put into action very often..... hopefully never! As an aside, to anyone in a similar situation, the Health App on an iPhone is a very useful tool. I’d also recommend setting up the emergency SOS contact thing too. 

Another challenge, but all for a reason, and probably beneficial to have happened now and like it did, for less potential drama in the longer term. 

I have work related plans for tomorrow that also form an important part of my ‘learning to live with.....’ I’m going ahead with them. Safely and under supervision. Sensibly. But I’m not allowing myself to be set back unnecessarily. 

Having cancer sucks. Having a brain tumour sucks. Having epilepsy sucks. Having any long term medical condition sucks.  My life however does not suck at all! I remain very happy and optimistic for a long, happy, healthy, and hugely enriched life! I am surrounded by love, support, fun times and good things. Living and loving life...... gently, happily....... yep, we’re all good xxxx

Gigs, love, support, SPRING!

It may be snowing outside, but it is Springtime in my heart! What a few weeks!!

After discharge from Causeway Hospital just four weeks ago today, I am completely blown away by the leaps and bounds forward we’ve made!! It’s hard to summarise so much, but I’ll do my best........

Home - 

My house is spring cleaned, my ducks are in a row, my life is very much moving forward! 

Last night I attended my first gig since the end of 2016! My rocker friends, many of whom I’ve known and gigged with since my teens, overwhelmed me with the same love, care and genuine support that I’ve enjoyed from family, friends and work colleagues. 

It’s hard to describe without sounding totally gushing, but I am so humbled by the support I’ve been given. So many people have rallied behind me and become part of my fight and my story. 

Last night I went to watch The Temperance Movement at The Empire in Belfast. A big deal for me........ how would I cope with the crowds, the lights, the noise??........ I was treated like a princess!! The venue let me in early and got me seats etc. I got settled in, ear defenders on......... and then I just lapped up the love and support that overwhelmed me from all around! Enjoying the music and atmosphere of watching and hearing a live band...... the same as I have since I was a teenager! I sang and I smiled all night. Yes, I needed the ear defenders and I needed the seat, but I was so happy! I’m still smiling this morning!!

People I’ve barely met before approached me to say they read the blog and to offer encouragement and support. The gig circle is a tight and supportive one. Close friends who’ve been there the whole way through were just overjoyed to see me back out. Everyone on my side. Everyone giving me strength and support. I was hugged and kissed and encouraged and supported and praised..... I am overwhelmed and humbled by the sheer faith people have put in me, and your ability to get behind me. 

Work - 

I am back! A slightly different role and working closer to home, but very much back into things. As ever, bosses and colleagues have been hugely supportive. I’m excited about getting back and adding value to an organisation I’m very proud to be part of. 

My life is back! After a 14 month sabbatical, I find myself very much firmly back in the driving seat. It’s like I’ve been given a completely fresh start, complete with a totally awakened mind! 

I am now living with a brain tumour....... we’re mates....... We won’t fall out again. I am not scared or intimidated by her anymore. 

I’m just keeping a tight eye on her....... I think she’s clear now who the boss is........ I have an army behind me and I’m not interested in falling out again, but I WILL win again if she insists on another fight. She seems content with this. No-one ever really likes conflict anyway...... always best to work together......

We’ll officially check in on her in 3 months time with a scan. And then we’ll just keep engaging in a bit of ‘side eye’ with each other.......  Although both in the knowledge that I’m stronger, backed by warriors, and unafraid of her. If she misbehaves then we’ll go back to war, but we know what we’re capable of now, so it’s easier to be confident.

Life is good!

#livingwith #lovinglife #movingon #springingforward #overwhelminglove #iknowthebestpeople #completesupport #soloved #sograteful #sickeninglyhappy #feelingnothingbutlove #givingnothingbutlove #bestlifeever #affirmation #bitemeifyoudontfeelthelove 

Xxx