Walking taller

“We don’t need no education”

The Wall, Pink Floyd

I didn’t like school as a teenager. I was rebelling against a step mother and step sister, against a very middle class upbringing and against the world in general. I dressed in black, ripped jeans and turned to rock music. Anything to annoy those in authority. I was opinionated and not afraid to question. My teachers didn’t always appreciate it!  I think I can pretty safely say that none of those teachers ever said “This girl might just be a bit of a late bloomer and one day I reckon she’ll find her niche and maybe even end up receiving a medal....” 

But guess what??..... yesterday, at Hillsborough Castle, I received my British Empire Medal for Services to Policing! 

Never in my life would I ever have seen that coming (Nor would anyone else I don’t think. I know my former teachers certainly wouldn’t have!) I love my job and am passionate about it and the organisation, so it’s not difficult for me to go the extra mile on occasions. I’m certainly not alone in doing so, and it’s a real honour to be recognised for it. It’s taken me a while to stop justifying my BEM and to accept that sometimes your best is good enough, but I’ll openly admit I walked out of Hillsborough Castle yesterday carrying myself just a little bit taller. 

I have a few observations about it all -

• It’s one for the workers! I’ve worked hard but I’m not sure I’ve done anything truly exceptional. Sometimes your best is good enough. 
• You don’t need to be in the top tier in terms of rank or grade...... just do your best and you might make a small difference where you are.
• I believe much of my reward is due to my ability to work in partnership..... and you don’t do that alone! There are a lot of other people who should be sharing that medal. And how amazing are those who took the time and energy to nominate me?? Good people. 

I was joined at Hillsborough by my husband, son and sister. It was all very posh and I was quite overwhelmed. In a bid to remain true to myself, I had ordered a dress with a Wind in the Willows print on it. It wasn’t expensive and there was a very real risk it could’ve arrived looking like something from a dodgy t-shirt printing shop in a seaside resort! Thankfully it didn’t. So I was able to keep things classy but still the tiniest bit quirky. Determined to enjoy the glamour of the whole thing, I even bought a hat! 

When we arrived, those receiving medals were taken to a different room from their guests. I began talking to a lady I randomly found myself standing beside. In yet another strange synchronicity it turned out that I know her son through work...... and then we noticed we both had on the same hat!! She was wonderful. In the past year she has celebrated her 80th birthday, 60th wedding anniversary, and now received a BEM. She was warm and sweet and helped keep my nerves in check. (It’s fair to say I was a little hyper...) 

I don’t really remember walking in to receive my medal. I’m pretty hazy on what I said to the Lord Lieutenant, although I do know that my son is currently her neighbour!! I’m sure it’s wonderful for her to have students living further up the street. I’ve told her if she ever sees him drunk, with a traffic cone on his head, that he’s nothing to do with me! 

What a day! The staff were lovely and went out of their way to make us all feel really special. And the medal is beautiful! I’ve no idea when I’ll ever be anywhere that will call for me to actually wear it, but just having it feels pretty amazing. Lapping it up?? Damned right I am! 

The day was finished off with a meal with friends. Great company, shared laughs, relaxing time after all the excitement of the day. Today I’m exhausted but glad to be back home and relishing a bit more time with hubby and big sis. Not to mention sorting out the washing...... a BEM doesn’t really change things too much haha!! 

The rebellious teen has turned out alright I think. At 43 years old I’ve been married for 21 years, have raised a gorgeous son who I’m very proud of, have a BSc (Hons) in Crime and Criminology, a network of the best friends a girl could ever want (many of whom date back to those early rock n roll years!), and now I’m the proud recipient of a BEM. I have a great life and am surrounded by amazing people. 

Lucky old me xxx

Sea slaps & friends

Sunday. My favourite day of the week. The past week hasn’t been one of my favourites. Not awful but it’s fair to say I haven’t been on top form since having a couple of small seizures and an overnight in hospital a few weeks ago. I know I’m luckier than many, but it was undoubtedly a confidence kicker and a set back, not least because it slowed down the speed at which I could get off the steroids. Plus the slight increase in anti seizure medication is making me tired...... or something is. Everything has just been the tiniest bit more difficult than it had been. 

Thankfully we’re becoming more adept at managing these small blips. For me it’s all about keeping busy but not too busy, surrounding myself in positivity and support, laughing, and getting plenty of rest. Balance.

In my world of synchronicities, as always, friends pop in with support at the best times! Family are always there too and are unbelievably intuitive.... knowing exactly what to do, when. 

On Friday I enjoyed a lovely lunch with a neighbour. Yesterday a fellow brain tumourette called unexpectedly with a beautiful gift - a very pretty bangle that has ‘carpe diem’ engraved on it. Today another friend, who’s been my friend for 30 years, went sea bathing with hubby and me. She brought me a framed, beautiful old photo of swimmers in the sea in the same place we go to every Sunday morning. A step back in time that shows how long people have been enjoying the benefits of being near and immersed in the ocean. 

And there are very definite benefits! Today’s sea bathe was a bit like getting beaten up..... waves were hitting us so hard you could literally hear the slap! And it was chilly.... not the water so much as the air. We laughed and laughed as wave after wave washed over us. Is there anything funnier than the anticipation of a comedy moment you know is coming?....... you can see the wave coming in, you can see it starting to rise up, you know it’s going to break over your head......you know you’re going to look like a fool....... Laughs all round! 

My friend who got me the photograph had recommended I read a book her husband loved. He’s a surfer. The book is called ‘Blue Mind’ by Wallace J. Nichols. I’m absolutely loving it. It explains our obsession with water. It even manages to provide some explanations for some of the more quirky things I’ve done over the past 19 months; such as the phase I went through where I wouldn’t wear any colour except blue! And my complete hankering to get to the beach and be in the sea. Seems it’s all to do with neural pathways and the like. The book perfectly meets my needs - scientific explanations alongside observations about the more ethereal feelings and emotions being near or immersed in water can elicit. 

19 months down the line and I’m still learning how to deal with this new life I’ve been thrown into. Sometimes it’s just hard. It can seem unfair and be exhausting. But sometimes it feels like the most important life lesson I could ever have been given. As I sit on my sofa on a Sunday afternoon, in my PJs, fresh from the shower after a good morning’s sea slapping, with hubby beside me dozing, I couldn’t be more content. 

I remain the luckiest unlucky girl in the world. 

“Neuroscientists and psychologists add that the ocean and wild waterways are a wellspring of happiness and relaxation, sociality and romance, peace and freedom, play and creativity, learning and memory, innovation and insight, elation and nostalgia, confidence and solitude, wonder and awe, empathy and compassion, reverence and beauty — and help manage trauma, anxiety, sleep, autism, addiction, fitness, attention/focus, stress, grief, PTSD, build personal resilience, and much more.” 

From Blue Mind by Wallace J. Nichols

The good and the bad....

Yet again, I find myself torn between feeling incredibly positive and hugely frustrated and scared. I’m focusing on the former and trying to constructively deal with the latter..... 

I’ll write about them in reverse and start with the negative because I can’t and won’t say too much about it, so it’ll be quick! Suffice to say that our Health Service, like all other parts of life, contains some amazing people and some awful people. It can be inspiring and life saving whilst also being, at times, dangerously incompetent. There is a massive funding issue and also some human cynicism and lack of care. Patients rely on the NHS staff and it’s terrifying when you can see a clear lack of care and become confused about the best way forward. As ever, I remain grateful to the ones who’re in the job for the right reasons and I lean on them to help me navigate the deep and dangerous waters of a minority of departments/ specialists. 

September was always going to be a big, exciting month for me. I knew this and had been settling myself and preparing for it. I had hoped to be finished with steroids on Saturday past so was seeing the next few months as ones where my body could just start to find it’s balance again. Unfortunately my wee set back has extended out the steroids for a bit longer. Only a few weeks, but enough to lead to a few tears. 

Right, that’s the negative done. I’ve stuff to sort but it’s a job for another day and much higher energy levels.

Positives! They’re where it’s at........

On Saturday, hubby and I went to two charity coffee mornings. One was for QUB Brain Tumour Research and the other for Macmillan. It was lovely to bump into a nurse who’d help deal with me when I had my most recent seizure. I owed her a hug and it felt good to get the chance to deliver it. Today I unexpectedly bumped into two people who I’d met at one of the coffee mornings. More lovely folk who’ve learnt the value of life. This was followed closely by meeting a colleague from my first full time  job, some 20+ years ago! She had sent me a lovely card when she’d found out about my condition and it was nice to see her, say thanks and share yet another hug! 

I got sea bathing again yesterday after missing the previous week following my hospital stay. This week my neighbour went in too. She loved it and I loved her company! What a glorious, life affirming way to spend a morning. 

Last night we went to the Waterfront to see Biffy Clyro unplugged. I cried three times but just “oh I’m a bit overwhelmed” tears that didn’t last. I’m quite sure releasing them did me a world of good. 

Today I’ve been working and have spent some time with my dad. I’m tired so will be in bed early tonight. Some of the finishing touches for my BEM outfit arrived, which makes me smile. I can’t believe it’s next week! It still feels so surreal. I hope my outfit is enjoyed by family and friends as being both suitably smart and dressy, yet slightly quirky..... Hoping the weather gods don’t dump another storm on us, but the long range forecast isn’t too bad so far. Honestly I don’t even know if it’ll be indoor or outdoor so it’ll all be a lovely surprise on the day. Most importantly I get to share an enormous honour with my husband, son and sister. 

So all in all I guess the rollercoaster ride continues. It’s just life. Highs and lows, putting one step in front of the other, and enjoying the good times and positive human energies. Hopefully I’m doing it right!

“I work very hard, and I play very hard. I’m grateful for life. And I live it – I believe life loves the liver of it. I live it.”

Maya Angelou

Geeky and ridiculous.....

My local paper picked up on the Macmillan cheque handover and asked to do a feature. A good way of raising awareness of Macmillan services and hopefully giving some hope to others. Also great to be able to give credit to those around me. 

The paper came out today. It’s impossible not to feel a bit wick...... I refer to the number of hits on this blog as ‘ridiculous’ and even call myself ‘geeky’...... True, but perhaps not for admitting in an interview!

I’m also a bit adverse to the use of the word ‘traumatic’. It’s a bit like ‘suffering’..... I’m not ‘suffering from’, I'm ‘living with’. There have been traumatic times, and will no continue to be, but there have also been some wonderful, life affirming times.

Anyway, as I cringe a bit, I am also happy. Hopefully some of what I’ve said will resonate with others. And most of all, hopefully family, friends, colleagues, Macmillan and Causeway Hospital doctors and nurses will read it and know how much I appreciate them, and also see how their kindness and generosity will help local cancer patients. 

“Tricia’s Traumatic Journey”..... available on Disney dvd from September...... haha xx

Fighting meds

As ever, I’m fighting medications. After Thursday evening’s blip, I’ve had both my steroids and my anti seizure upped very slightly. It’s not by much but I hate it.

Ironically, the increases keep me safe but make me feel worse. Logically I know I’m safer, but physically I feel more vulnerable. I’m tired, a bit shaky and generally more dopey.  As a result, I managed to take a double dose of anti seizure meds this morning..... taking tonight’s as well as this morning’s. Unbelievably, despite being in marked up pill boxes, this is the second time I’ve done this in the past year. A lapse in concentration resulting in me making a stupid mistake. I thought I’d cried all my tears over Thursday night, Friday and Saturday, but the meds mess up this morning brought more. I don’t want to be the idiot having to bother the doctor on call to ask what I do after taking the wrong tablet dose....... again...... The doctor on duty was lovely and reassured me patiently. It was decided that I should prepare to feel particularly tired and dopey today but just to keep things calm and only take a very small dose this evening to keep me safe overnight. I know half the battle is staying calm, and I’m hoping I’m so tired I’ll sleep through tonight without any issues. The only way to deal with it is by staying calm and not allowing fear or negativity to creep in. 

Thankfully, as ever, my wonderful family stepped in to hold me up.  My sister and brother in law were over for a quick visit after my hospital stay. I couldn’t really sea swim today, but we all went to Portrush anyway. We could still appreciate the sea air, the beauty of the sea, and each others’ company. We enjoyed breakfast, had a short walk and ate ice creams. Then we came home and waved sis and b-i-l off. Hubby and I settled on the sofa with Rock of Ages. We subsequently booked tickets to see the musical at the Grand Opera House next June. Sure, why not?

So it’s been a crappy few days but also a few days when I’m yet again reminded how loved and cared for I am. Far too many tears shed but supported by my local Team and my family as always. 

Tomorrow I’m going to work as planned. I wouldn’t if I didn’t feel up to it or thought there was any risk. I know that staying at home or sitting alone will drag my mood down further as I’ll overthink. 

The facts are that I’m grand. The increase in meds is a setback but it’s temporary. We’ve been here before and we’ll get through it now like we did then. I’ll pay more attention and make sure I don’t lose focus and take even more than I’m supposed to.... numpty! I’ve been checked over, I’ve had another wee warning about doing too much and getting over excited, I’ve had my scan results a bit earlier than expected and the tumour is stable. Plenty of positives. 

Just to prove I’m still smiling, go into YouTube and look up the video of the older, Scottish woman reading The Wonky Donkey to her grandchild. Funniest thing I’ve seen in a long time. 

“Against the assault of laughter, nothing can stand.”

Mark Twain

Still standing!

“Don't you know I'm still standing better than I ever did

Looking like a true survivor, feeling like a little kid”

I’m still standing, Elton John

Seizures and a night in hospital are not what we want. It’s easy to feel a bit defeated by another setback. Until we really think about it..... I’ve just been reminded to take care of myself, to take things slowly, that it’s ok to have a good cry, and that I’m still here and luckier than many. I’ve been reminded of how many people care about me and how many good people there are in the world. 

I was kept in hospital for just one night. During that time I was kept safe and had a full MOT. I also got the general results from my last scan...... it’s being classed as stable. There will always be the totally unrealistic, believes in fairies, part of me that believes some day I’ll be called in and told the tumour has gone completely......but in the absence of magic, ‘stable’ is as good as we’re going to get. Stable is good. Stable is great. Stable is alive and functioning and living a happy life. 

So I’m relieved but also still a bit scared. Seizures knock your confidence. I’m scared of another one happening. Particularly in public. I feel guilty for others having to deal with me because I know it must be awful to see someone in that state. I’m tired and still a bit shaken (no pun intended, but comedy genius is difficult to suppress!)

So why did it happen now? Probably medication changes. And maybe a bit of over activity on my part again. September is a big, exciting month for me. Like a child on Christmas Eve, sometimes I can overwhelm myself.....

But we’ve been here before.  Serious medical conditions bring big, scary times. There’s no avoiding them. But that’s life. Brain tumours suck. Cancer sucks. But I’m home, I’m safe, hubby is looking after me and my sister and brother-in-law are coming over for a flying visit. My confidence will come back as time passes. 

One final funny story to end this blog entry on......

The Family Room our Macmillan donation is paying to refurbish? I was told it’d probably be in Medical Ward 1. I said I’d prefer it was in Rehab 1 because that’s the ward is been in..... Guess what ward I was in on Thursday night?? Oh the irony...... Medical 1 of course! The staff there were also wonderful, as were those in A&E. My local hospital is jammed full of incredible NHS staff. I have a whole team of experts who I know have my back. Not to mention the emotional support of the best family and friends anyone could ever hope for.

Slightly down but far from out..... 

“Blackbird singing in the dead of night

Take these broken wings and learn to fly

All your life

You were only waiting for this moment to arise.”

Blackbird, The Beatles

A hat and a setback

So I got my dress for my BEM ceremony at Hillsborough in a few weeks time. It’s perfect! Smart but different...... very ‘me’ I think. And I even ordered a hat! In for a penny...... My hat arrived yesterday. I got home from work and there was a big box on my doorstep. Exciting times! I opened it, made sure I still liked it and then rushed off to choir practice. Everything was going swimmingly......... 

We were singing away and I was feeling fine. Then I started to feel a bit of a twitch in the left hand side of my face. Out of the blue. It very quickly became a seizure. Thankfully there were two nurses in attendance as well as some good friends. They all worked together to get me sitting down and to reassure me that everything was ok. 

Seizures are terrifying. And exhausting. And embarrassing. And confusing. And upsetting.

Hubby was duly called and came to get me. He took me home where I had two further seizures. Again, not big ones, but still frightening and upsetting. Doctor on call were contacted and they sent an ambulance.  By the time I arrived in A&E I felt a bit like the guy in Night of the Living Dead........My left arm was completely dead to me and I was half expecting to start smashing plates over my own head. Thankfully it eventually came back before I had to start up the chainsaw......

Another night in Causeway Hospital Hotel. I’m hoping it’ll just be B&B and that I can cut my visit short and go home later on today.

I’m gutted. It was going so well. September is an exciting month and I was due to finish the steroids in 2 days time. Now I’ve had them upped very slightly again. After months of working to get off them. A bit soul destroying. 

Deep down I know it’s just another bump in the road and that I’ll be fine. I’ll allowing myself to be a bit pissed off for a day or two, I’ll rest up. And then I’ll pick myself up again. I have a lovely dress and a damned posh hat and I’ll be bloomin wearing them! 

“Sheltered, you better keep the wolf back from the door
He wanders ever closer every night
And how he waits begging for blood
I promised you everything would be fine”

The Wolf, Mumford &Sons

Update-

I’ve had a full check and all is fine. I had a scan 3 weeks ago and everything was stable so there’s nothing horribly sinister that we weren’t already aware of. This is just a speed bump. My anti seizure med has been increased a bit. So has my steroid, but I’ll be able to start dropping it again after next week, so it’s not as bit a setback as I initially thought. 

I’m safe and being very well looked after and I’ll get home later on today. Tired and emotional but not letting it drag me down for long xxx

Holding back the sea

It took a few months, but the media stuff is now done. I was interviewed by the local paper on Friday and did the obligatory ‘big cheque’ hand over today.

It feels good to get it sorted. To everyone who’s given me the credit, please note how we signed the cheque...... I didn’t give almost £9,000 from my bank account. It was very much a team effort by my amazing family and friends. 

The inspirational people are those around me. The doctors and nurses that looked after me and kept me safe, my sister and brother in law who asked for donations in lieu of wedding gifts, my husband and son who continue to look after me and put up with all my ‘quirks’, the friends that organised and played at Triciafest, the family and friends that donated as wedding gifts, and the friends who donated just because they’re decent people. 

Today I celebrated the cheque handover by going out for lunch and to the cinema with a wonderful friend. We watched Mama Mia 2; an entirely ridiculous film that we loved! The company was perfect and the film great fun.

Yesterday, hubby and I went sea bathing (month 3 already!) before staying to watch the Red Arrows. The sea swimming conditions were perfect, with plenty of big waves to get you in quickly, and nice and warm for getting out. The waves were chasing me..... no matter where I went, the big ones always seemed to break right over my head. Hubby decided at one point to be the gentleman that he is and protect me........ he stood behind me as I was treading water; the intention being that the wave would break on him and I’d be sheltered.... Hmmm, what actually happened was that the wave hit him, threw him forward into me, knocking me flying. I had a short moment of thinking I might drown as I lay on the sea bed with hubby’s full weight pinning me down. Thankfully he moved relatively quickly and I was left properly dunked but knowing I have husband who will literally try to hold back the sea for me! 

After sea bathing we had breakfast baps, ice creams and watched some of the Airshow. Then we came home early afternoon and, after showers, snuggled up on the sofa to watch School of Rock. Sundays don’t get much better! 

This Saturday sees me take my last steroid. I’m both delighted and a bit nervous. It’s been 18 months and titrating off them has been fairly hard work. It’ll be good to have my body back a bit. I’ll only be left taking anti seizure medication, and it’s a relatively low dose. I’m hoping that getting rid of the steroids will help me function a bit more smoothly. I do well in general, but there are few rare things that I definitely won’t miss! 

All in all, I really don’t have much room to complain and I continue to appreciate how fortunate I am, compared to some. I’m living an exceptionally happy and fulfilled life, and intend to keep doing so for as many years as I’m meant to have. 

“Took a drink out of the ocean and I'm treading water there before I drown.

Let's dive, I wanna dive to the bottom of the ocean”

Mountains by Biffy Clyro 

You know you’ve got the best friends when.....

Big triciafest update!

In May 2018 my sister, got married and asked guests to give to Macmillan in lieu of wedding presents.  On the evening of the wedding, local rock bands Fragment, Trucker Diablo, Nasa Assassin, Gasoline Outlaws and Lo Mejor played a gig at The Diamond Rock Club in Ahoghill.  Nicknamed ‘Triciafest’, the night raised money through ticket and merchandise sales.  Other bands and local businesses also helped by giving auction and raffle prizes. 

Total amount raised through all the fundraising was £8,748. 

As a result of the money raised, Macmillan is now able to provide the Northern Trust with funds to refurbish a Family Room in Causeway Hospital, including the provision of reclining chairs that can be moved onto Wards, at bedsides.  This allows families of cancer patients a relaxing place to have a break and talk, as well as allowing carers to spend time more comfortably at their loved one’s bedside.  This is particularly important for older carers.

On Monday I am getting the obligatory media photo of me handing over the ‘big cheque’. Yesterday I gave an interview to the Coleraine Chronicle. 

YOUR generosity is going to make a genuine difference to local cancer patients. Thank you from the bottom of my heart. My family and friends totally rock! Xxx