Immovable objects

2019 is nearly over. It’s been a big year, full of fun and achievements. I’d never have believed I’d have been to a garden party at Buckingham Palace, got my official Arcadia Bathing Club membership certificate for a year of sea swims, gone to gigs galore, raised thousands of pounds and appeared in a promotional video for Macmillan, and got my driving license back within a year. 

It’s been a great year and thankfully I’ve maintained stable scan results throughout. Cancer and I continue to live together in harmony. I’m trying not to annoy it and it seems to be returning the favour. Emotionally and physically it’s not always easy, but I’m definitely stronger than I have been since that initial grand mal seizure in the early hours of 20 January 2017.

20 January 2017....... hard to believe, huh?? Almost 3 years. I remain the luckiest unlucky girl in the world. Sometimes the years flying by terrifies me...... sometimes I remember it’s one step closer to the day this beast in my head loses its temper again..... but then I remind myself to flip that thought around. Nobody has ever given me a timescale. Nobody knows. The years are there for the taking and I plan on continuing to fill my glass. I still believe it’s not impossible for me to be the one that beats the unbeatable. What is it they say about immovable objects and irresistible forces??..... 

Truthfully, I didn’t know the answer to that riddle. Science was never a strong subject for me. I just had a quick google and it seems the answer is nothing..... when an immovable force meets an irresistible object absolutely nothing happens. I’ll not try to explain why but will happily accept this as an outcome. I’ll keep being the immovable object to cancer’s irresistible force and things will stay as they are. If I’m really fortunate I might even become the immovable object that engulfs the irresistible force and stops it for good. Who knows?? 

What I do know is that I am stronger and happier. My life has changed but generally in good ways. 2020 looks set to continue in that positive vein...... there are lots of happy times on the horizon and I can’t wait to get stuck into another year of #livingwith...... 

Santa splashing with friends :)

I love Christmas! For so many reasons...... 

First I get time off work. I generally love my job, but every job brings challenges and it’s only healthy to get the odd decent break away from it!

Second I’ve had lots of recent get together with friends and family, and more to come.

Thirdly we get extra sea dips...... today was the Santa Splash. Conditions were perfect. I arrived down just on time but after flaffing about looking for my friend and then having the hassle of needing to pee at the last minute (swimsuit nightmare!) I ended up living up to my Santa hat........ “Princess”.......and was about the last person to enter the sea! Not that it mattered. My friend found me, and my other friend and her daughter were with me too. There were hundreds of people laughing in the sea. The wave height was perfect and it wasn’t even all that cold for December........ although one wave did hit my hat, causing the white bobble to flip forward and give me a wet slap in the face!! Sure that’s part of the fun of it.

Hubby had been dispatched to collect the Christmas food but my mate was an excellent back up support team! He helped his wife and I to maintain our dignity while manoeuvring (wriggling) our way into towels and Coucons*, out of swimsuits and into clothes. Hubby arrived just in time to take me home and we enjoyed hot cups of tea with our friends beside the Christmas tree. 

We’re now finishing off our evening watching Top Gun. Best. Husband. Ever!!

Tomorrow he has to work so it’ll be wrapping and housework for me. Then it’ll be Christmas Eve and our gorgeous son will be home for a few days. Perfect!

Enjoy Christmas everyone xxx

Happy Christmas to me!!

It’s been a big week! 

On Saturday I got my ‘entirely stable’ scan results. Woop woop!!

 On Tuesday Macmillan released a video I appeared in. It featured patients reading out thank you letters to their Macmillan nurses. It was a lovely, positive campaign and seems to have gone down well. The nurse I thanked, Terry, and I were both interviewed for the Belfast Telegraph. He described me ‘very special’ and said I’d ‘worked really hard to get her life back on track again and she’s a great inspiration.’ He’s very kind but I’ll admit it made me feel heart warmed to read such kind words from a man I deeply admire.

Then today........ I had it confirmed I could drive again!! After almost three years, I finally got behind the wheel again. It all happened so quickly! I had expected insurance to be a total pain but we walked into the local office of our car insurance company and I walked out insured. Hubby handed me the car keys and told me to drive us home.......

Thankfully driving is not like playing piano...... I used to play piano as a kid and got as far as my Grade 6. The problem was that my lesson was at 5pm on a Saturday evening every week. As a teenager I didn’t want to have to be home for piano lessons on Saturday evenings...... I wanted to go to my friends’ houses or go ice skating. Once I hit 15 I’d discovered rock music so I used the excuse of GCSE pressure to bow out of piano lessons (yeah, right...!!) By the time I wanted to play again, many years later, I was horrified to discover I’d forgotten how! I couldn’t read music anymore and didn’t have the patience to re-learn. So thank goodness driving is more like riding a bike..... you don’t forget! 

I have been fortunate. I have a wonderful husband and friends more than willing to ferry me about. I’m fit enough to get buses and trains and even sometimes walk home from work or town. Getting my license back is more about confidence. It feels like another big step forward. It further proves I’m going in the right direction. I’m getting stronger, despite cancer. 

So I’m stable, have done a wee bit more for Macmillan  and I’m mobile again! Happy happy Christmas to me......and to hubby..... I’ve no intention of ever drinking again so now I’m the taxi! Happy Christmas to us all! 

Living with xxx

The Waiting game

Waiting is something I’m genetically predisposed to do badly. My father can’t sit still and is always moving ‘with purpose’. It’s an apple that didn’t fall far from the tree.....But if there’s one thing cancer teaches you, it’s patience. If you didn’t learn how to wait then you’d drive yourself insane. 

I’ve definitely got better at it but I wouldn’t try to pretend I’ve completely mastered the art. Unsurprisingly I find it particularly challenging when waiting for life changing news. For the past few months I’ve been waiting for two such pieces of news....... 

The first is the return of my driving license. I applied to get it back months ago. I expect it to be fine as I’ve been seizure free for over a year and keep pretty well. I certainly don’t feel that I’d be unsafe behind the wheel.  But still I wait....... I’d been warned it takes a long time, but it’s getting really frustrating.

The second news I have been waiting for was scan results. I get MRI scans every 3 months or so, just to make sure my brain tumour is behaving itself. I’m not sure what happens if it starts to misbehave again..... probably not much unfortunately. I had my last scan on 6th November so it’s been a long month. Usually I get a letter from my Oncologist within a few weeks but this time was slow........

Every day I check the post expectantly and haven’t been able to help the sinking feeling of no news. Deep down I know that no news is usually good news...... if something was going wrong I’d hopefully hear sooner rather than later. But somehow that never seems to matter....... reason doesn’t really come into it. Particularly in the last two weeks I’ve found myself suffering a serious case of scanxiety. 

Yesterday hubby checked the post. He came in with a package, winked at me to let me know it was a Christmas present, and then casually handed me a letter.  I immediately saw the Hospital crest on the envelope and felt my heart start to pound....... 

I opened the letter and gave a shriek of joy as I read the words “........ remains entirely stable.” I literally jumped up and down, flapping the letter about! Hubby smiled and told me he’d never doubted it. I hadn’t really either, but it’s impossible to completely escape the shadow that cancer casts over you.  As he wrapped me into his arms, the tears started to flow. Relief poured out of me in rivers down my face and I was so glad he was there to hold me while I absorbed this huge and exciting news........ I think if I’d been alone I’d have been out shouting in the cul de sac!! We celebrated by doing the supermarket shop (life goes on!) but then went for a lovely lunch and had a relatively quiet afternoon. 

The weather has been awful, with another storm overhead today, so my head has been very sore. Last night we went out to watch Cormac Neeson and the Unholy Gospel Band......wow! Perfect choice! I’ll admit I wasn’t completely sold on going. You know what it’s like..... you decide to do something but then the time comes and you’re tired and can’t really be bothered...... that’s how I felt yesterday evening. It was cold and raining and I wanted to curl up on the sofa, not head out on a 35 mile drive to the venue. I’m glad I decided to go. It was a superb night’s music and it gave me a second wind as I went back to buzzing over my good news! I came home absolutely frozen and took ages to get to sleep, but when I did pass out I slept like a log. 

I’ve woken up deaf in one ear (despite ear plugs), but this is probably more due to the weather. I am looking out of my window at pouring rain and listening to the wind whipping around the house. I was supposed to be doing the ‘Polar Plunge’ today in aid of the Special Olympics but have known for much of the week that the forecast was awful. The surf report was just red triangles with exclamation marks in them for the whole day...... I’ve never seen that before but could only assume it was bad!! I consulted a friend who’s husband is a surfer and the response came back ‘Aye, he says we’re f**ked!!’ 

As a result, I get to spend today on the sofa. Thank goodness for that. I’ve paid my registration fee so there’s still money going to the charity, but I don’t have to brave pouring rain, freezing cold and 5 meter high waves! Win win! 

It’s a good day to be stable ;) 

Living with xx

A musical premonition

A few weeks ago I had a very vivid dream. I dreamt that I was standing chatting to Neil Finn. 

{Background: For those of you not familiar with him, he is lead singer and guitarist in Crowded House (‘Weather with you’, ‘Don’t dream its over’ etc etc). Finn has recently been out on tour playing with Fleetwood Mac since Lindsey Buckingham decided to part company with them. }

Anyway, so Neil and I are chatting and I ask him why he joined Fleetwood Mac instead of sticking with Crowded House. He told me that he’d discussed it with the rest of the band and everyone agreed...... he’d join Fleetwood Mac for two years to raise his profile, therefore also raising the profile of Crowded House. Whilst many know them, the band by their own admission, can be one of those that you don’t realise you know. I remember a greatest hits album many, many years ago being advertised with a slogan something along the lines of “All your favourite songs from the band you didn’t know you liked!”   So in my dream Finn acknowledged they weren’t well known globally and that after he’d done two years with Fleetwood Mac then Crowded House would go back out on tour and would get much larger audiences.

The dream was so vivid that I told people...... this turned out to be a good thing because I’m not sure anyone would’ve believed me if I’d said it yesterday...... when Crowded House released UK tour dates! 

A little weird..... though it’s yet another example of how complex the brain is. I can only assume that somewhere in my head was a ponder about why he’d changed bands.... and a possible (fairly sensible and possibly quite predictable) answer came to mind whilst I was sleeping..... Either that or all the jokes I make about brain surgeries leaving me slightly psychic are actually truth!! Hubby says it’s proof I’m a witch.... but I hope he means a white one like Stevie Nicks rather than a nasty one! I was going to say ‘like the wicked witch of the west’, but if you’ve seen the Wicked musical then you’ll know the truth about that and how you can judge people without all the facts..... 

Either way, this morning I booked four tickets to see Crowded House at a venue conveniently located, in another twist of fate, right next door to my sister and brother in law’s home! Again a bit weird, but also fun. 

My sister and I generally don’t share musical tastes. When I was rocking out to Metallica, she was spinning around to Kylie. When I was throwing horns to AC/DC, she was throwing shapes to Wham..... So it’s nice to find a bit of common ground! The tickets and flights are booked so hopefully I’ll get some decent weather to take with us ;) xx

Little princess

A few weeks ago I was invited to attend a charity night at a local spa, Perfections. I was given a free foot massage which was wonderful. While there I met two girls who were representing a local charity, The Gillian Adams Angel Foundation. Gillian was their sister-in-law and sadly passed away in 2015 from bowel cancer. She was two years younger than me. Far too young to die. Her wonderful family run the charity in her name and have a simple and clear aim ‘to help families who’s lives are being affected by cancer’. They offered me a range of help options. I explained that I worked and would feel bad taking anything but the insisted they wanted to help everyone, regardless of their circumstances. 

Today in the post I received a £100 voucher for a lovely local butchers. I still feel a bit bad taking it but cancer is an expensive business and this will go a long way. Thank you The Gillian Adams Angel Foundation! Xx

#livingwith

Triciafest Outcomes Update

As you will be aware, our inaugural Triciafest and my sister’s wedding donations raised over £8,000 for Macmillan Cancer Support. I fought very hard to get this money back to Northern Ireland and, more specifically, to my local hospital, Causeway. 

I promised those of you generous enough to give your time, energy, support and hard earned money that I would give you tangible outcomes. It’s been a long and often stressful journey, but I wanted to update everyone on our achievements to date....... Here’s a summary;

• The money has been given to the Northern Trust to be used to refurbish a Relatives Room in Causeway Hospital, Coleraine.
• We have chosen a theme for the room. The Riverbank Room will be based on The Wind in the Willows by Kenneth Grahame, and will be a place of peace and tranquility amidst an often stressful acute hospital environment.
• The room will provide a space where patients and their loved ones can go; whether it be to have some quiet time or have privacy to talk to each other or medical experts. 
• There will be relevant leaflets and tea and coffee making facilities in the room.
• We have found a wonderful, well known, local  artist who is going to paint Wind in the Willows murals on the walls of the room; further enhancing the sense of peace and tranquility. I’ve seen some of his work and he’s done up sketches that make me very excited to see the finished result. It’s going to be wonderful!
• After much pressure being applied by both myself and an excellent member of hospital staff, we now have some movement by the Trust’s Estate Services. we hope work will begin at the start of next year.

It’s frustrating that things have moved so slowly, but the public sector never moves too fast in my experience! More importantly, we’re getting there. Today I had a meeting with the hospital lead and the estates contractor and things are moving forward. I will look forward to showing off the room when it’s finished and I hope everyone who has contributed will feel proud of what we have achieved together.

In order to make things a bit easier this year, and also because I’m conscious not all contributors live within the Causeway Hospital area, this year the money raised through triciafest2 has been given to Macmillan to be used to help provide support to cancer patients and their families throughout Northern Ireland. The intention is to do the same with next year’s money. 

Triciafest2020 is provisionally scheduled for Saturday 19th September. We are currently securing bands to play at it, and will soon start gathering up raffle prizes in earnest. If you can help, please get in touch. 

Let’s make Year 3 the best one yet! Thank you xxx

Supermarket happiness

Saturday morning is supermarket shop morning. Hubby always says he hates going, but I think he secretly doesn’t mind really. In fact I even think he’ll keep going with me, even when I get my driving license back and he doesn’t need to......

Unlike hubby, I generally don’t mind the Sainsbury’s run. Like most things, if you go with the right attitude then you can have fun.

“Fun at the supermarket?? How on Earth??”, I hear you cry! Well here’s two things that happened today. Two things in one trip!! And I wasn’t even trying lol

First there was a young girl dressed as a witch for Halloween. I heard her tell her dad that she was going to look at the toys and off she went. I carried on shopping and as I reached the top of the aisle I pushed my trolley around the corner....... out of the blue this little witch girl jumped out and grabbed the end of the trolley, shouting ‘GAH!!!’ A small shriek escaped my mouth. She scared me! But the fright soon turned to laughter. Hubby was also laughing heartily from across the aisle. The poor child immediately started apologising, telling me she’d been waiting to jump out on her dad and she thought it was him because we both had Comfort and 3lt of milk in the end of our trolley. 

As we went round the next aisle we heard her telling her dad that she felt really bad for scaring me. I walked back round to her, laughing and telling her not to worry, that she’d made us laugh. We all laughed together and it was great to see a kid just being a kid. I suspect she’ll get a few more laughs when she retells the story of when she scared the stranger in the supermarket. I do hope so!

Then I went to the tills. I saw a lady putting her shopping onto one of the belts. Now all us ladies know that there is a ‘knack’ to this..... a way of putting the shopping on....... an order. I’m right, right?? My husband does not agree. He’s more of a ‘chuck it all on and then throw it into the bags’ type of person. Every week he laughs at my insistence in putting toiletries and large items on first and fruit, bread and soft items on last. 

So I watched this lady and she was taking it very seriously. At one point she even pointed at items as she mentally worked out if it was all stacked correctly. As she finished and the cashier started to ring her items through I chuckled and complimented her on her ‘system’. I told her I’d always prided myself on my skill in this area but that she’d just put me to shame because she was clearly a pro!! She laughed and we shared top tips. It was made funnier by the face on the young guy behind the till, who clearly had no appreciation of the finer skills of food shopping...

Why do I spend time writing about a supermarket trip in a blog? Because it’s a reminder that happiness and laughter is catching. We could’ve plodded round the aisles, annoyed at having to go through the mundane act of shopping, but we chose to engage with others and had a much happier experience as a result.

A simple lesson but an important one :) 

Living with.... xxx

Changing seasons

The changing seasons has brought dark mornings already and the clocks don’t change until next week! It’s also brought me a cold :( but it’s not too bad so I’m hoping it passes quickly.

We’ve just had a lovely weekend away visiting my sister and brother in law in Manchester.  We spent Saturday walking up Marsden canal to the edge of the Peak District. I still haven’t beaten my most steps on my phone pedometer....... we covered just over five miles but it still doesn’t beat the eight I walked on 19th January 2017...... just before I had my grand mal seizure. That ‘personal best’ is a dragon I still have to slay. Although I have returned to the scene of the crime (part of it at least) and I also beat my most steps in a week when we were in London in May this year (when I covered 23 miles). I used to be able to cover that in a day’s hillwalking but it’s all progress. 

Sunday was spent playing mini golf and sharing laughs. It was a great way to spend the weekend and coming home with a cold made it even harder to get out of bed this morning. Dark, cold, stuffy. Boo hiss!

I definitely notice huge progress, both physically and mentally, from this time last year. My legs carry me further and my head doesn’t play as many tricks on me.

Next week I’ll be celebrating a year since I was signed out of palliative care. I’d always thought there was only one way of doing that, but it seems you don’t have to die. Which is good!! It’s scary to remember I was ever in palliative care to begin with, but somewhat life affirming to be able to celebrate a year since being signed out........ walking out rather than being wheeled out is definitely the best way to exit! 

Next scan is in a couple of weeks. The stubborn part of me will be disappointed with a ‘stable’...... I’m going for an ‘improvement’. But I won’t be greedy. Stable will do just fine. 

Living with xx

More big days!

There’s been a few big days recently.......

Our gorgeous son celebrated his 21st birthday last week and we joined him and his friends to celebrate on Sunday night. 

We’re hugely proud of him. His life changed dramatically at a time when I could do little to help him. As I was lying in hospital and then going through treatment, he was busy moving to Belfast to study at Queens University. He’s held down part time jobs alongside his education since he was 15, and has grown into a clever, funny and handsome guy with a good work ethic and a caring nature. We’re proud to have him as our son and look forward to seeing what he sets his mind to achieving after he finishes university next year.

Tomorrow I celebrate one year since I took my last steroid! That is a major milestone for me. They were a necessary medication for me at a time, but I was so glad to get rid of them. A year later and my body is still shaking off the after effects...... I’m menopausal, depend on medication to sort out an under active thyroid, remain chubbier than I used to be, experience occasional anxiety issues, experience short term memory loss, sporadic muscle and joint pain, am often tired........ and don’t even start me about my stretch marks and sore feet!!  There’s also still the small issue of the brain tumour...... but it’s much less angry with me and appears to be playing nice.

I feel like I’ve aged 20 years in the last two. But I’m still here! I remain the luckiest unlucky girl in the world.  I’m happy and I’m living a fun and hopefully useful life. This weekend I will celebrate a year off those nasty steroids by taking a nice walk with my husband and dog! It’s been a while since we visited my favourite tree and I think it’s time I gave it another hug.......

Living with....xx

Optimism

The other day I was at a work event in which we were given a list of words and we had to circle the three ‘values’  that were most important to us. One of my chosen words was optimism. My colleague and friend found this hilarious and told me to tell other colleagues “the tumble dryer story”....... it made us laugh so I thought I’d share it......

The Tumble Dryer Story (aka Optimism)

On Saturday our tumble dryer broke. It started blowing cold air. Hubby YouTube’d what to do and tried to fix it, but it seems ours doesn’t have a reset button behind the back panel.... As it was the weekend we decided to wait until Monday to ring the white goods fixer guy!

I commented “Well, at least it broke at the right time of year...” Hubby looked at me quizzically and reminded me it was almost October. “I know”, I said, “the radiators are on!”......*pause*.......*cogs turn*...... ”Although, I can see how summer might be better so you could hang stuff out on the line!”

We laughed heartily and I was still laughing two days later; hence why I told the story in the car on the way to the work event. Stupid? Yeah probably a bit. Totally random logic? Yeah, definitely. Optimistic? Yeah. And that’s cool with me! 

Whatever gets you through. Embrace that stuff!! 

Stronger......

I could feel my stomach starting to flutter a bit on Sunday as we prepared to go for our sea dip. The surf forecast wasn’t good........well,  actually it was great if you’re a surfer but not so good if you’re a (not very strong) sea swimmer! I was dreading going down, seeing the conditions and having to come home disappointed. It had been a long week and I was really looking forward to my sea therapy.......

We got to the beach and it was raining. It was also choppy. Big, breaking waves. Not generally good conditions for me. But with hubby and a dear friend by my side I decided I’d give it a go. 

Previously when conditions had been like this, the waves would hit me and knock me down. This week you had that risk, combined with clearly visible currents pulling swimmers in all different directions. What if I fell or got pulled out into deeper water? But this week I felt physically strong and it turns out I was right to trust my instincts. In we went. 

Yes, it was choppy. 

Yes, the waves were sweeping us back inshore.

Yes, the drag was then pulling us back out to sea. 

And yes, it was brilliant!! 

Instead of being knocked over, I could feel my legs so much stronger than they’ve been in a long time. The waves pushed me back towards the shore and I literally ran with them. It was fantastic! My friend and I laughed and squealed when we got caught off guard by unexpected breakers. We joked with other bathers as we found ourselves suddenly thrown into their paths and we all tried to avoid bumping into each other!

When we eventually dragged ourselves out of the water, we were glowing...... and not just from the sea slapping we’d just had! There were smiles on our faces and complete contentment in our hearts. The rain couldn’t dampen our high spirits!

It’s such a simple thing to do, it doesn’t cost a penny, you can make it fit your own schedule or join in with others, and it leaves you exhilarated, happy and feeling strong and proud of your morning’s endeavours. 

Get yourself some therapy with Vitamin Sea!!

Patience is a virtue.....

Patience is a virtue that carries a lot of weight/wait....... Final total (I think!) of £4,625. 

Absolutely brilliant!! Grateful from the bottom of my heart to everyone who helped and supported this year’s triciafest for Macmillan.

Complete awesomeness:)

£4,620. How incredible is that?? Given without question by hard working folk. Passed to Macmillan Cancer Support to provide vital services to local cancer patients and their families. 

If ever there was an example of people coming together to do a good thing, this is it.

The world needs more people like these people.

It takes a village

It takes a village to raise a child.

And it takes an army........ to organise a charity gig! And what an army I have!! 

Last night was our charity gig for Macmillan. We had 6 awesome local bands giving up their time and energy (lots of it too!) for charity. IT WAS CLASS!! The bands were all on top form and the crowd were loving every second. People won some cracking raffle prizes, had loads of fun and, most importantly, we’ve raised a lot of money for Macmillan. (Exact amounts to follow when we get our heads lifted)

It was a big build up and I was a bag of nerves in the days beforehand. It’s kind of like organising your own birthday party and then panicking that no-one will turn up. But it’s not about me, it’s about Macmillan Cancer Care. It’s about making good out of something bad. Taking action and not lying down to cancer. 

The sleepless nights were all worth it. The Club was packed. The bands were on fire. The donations were rolling in. The raffle tickets were flying out. 

The army marched. Our wee corner of the world has been improved just a little bit. It’s difficult to articulate how grateful and proud I am of our organising team, helpers, bands, venue, prize donators, money donators, raffle ticket buyers, gig goers.... FRIENDS. So much so that I have just spent a few minutes cuddling my amazing husband and having a wee weep.

Overwhelmed. 

Fundraising frenzy!

The day is close...... only 2 more sleeps until triciafest2!! Six local rock bands playing live in a wee club in Ahoghill. 1901, Lo Mejor, The Bonnevilles, Nasa Assassin, Trucker Diablo and Fragment...... All playing for sandwiches... literally. Venue generously provided free of charge again by the Diamond Rock Club, including door and bar staff. Amazing raffle prizes donated by a wealth of generous people and businesses. For the second year in a row I am genuinely humbled by peoples’ generosity.  There’s only a couple of days to go so if you haven’t given already then please feel free to give us some of your hard earned cash at www.justgiving.com/fundraising/triciafest2  

Every penny goes to Macmillan Cancer Care.

It’s been a pretty amazing day all round. My day off work was spent enjoying breakfast with my rock of a husband before doing a 3 hour shift holding a donation bucket for Macmillan in Marks and Spencer. People put so much money in it that I had to balance the bucket on boxes of mangoes to stop my arm from being bruised by the bucket handle!! That can only be a good thing. I got through two rolls of stickers and heard so many people tell me of their experiences of cancer. It was a stark reminder of the local statistics...... According to research carried out on behalf of the NI Assembly (back when they were still speaking to each other...) “By 2020, almost one in two people [in NI] will get cancer at some point in their lives.”

While politicians bicker and take wages for a job not done, public services struggle, relying more and more heavily on charities to fill funding and resourcing voids. If standing sharing stories and kind words with people for 3 hours helps then I’m happy to do my little bit. 

After that we were off to the hospital to show them the sketches for the wall murals to be hand painted onto the walls of the family room that’s being refurbished from last year’s triciafest fundraising. The artist is amazing and his Wind in the Willow sketches made me cry with joy. They are perfect and I am more excited than ever to see it all done in the hopefully not too distant future. I’ll be sure to post up photos when it’s all done!

Preparing for the gig has been tiring but it’s going to be so worth it. We’re making a difference. In our own wee way.......our fantastic friends and family are helping local cancer patients and their families. You guys are fantastic; organisers, prize givers, band members, raffle ticket buyers, donators, gig goers, bar and club staff....... thank you. I love you lot (and I don’t even drink anymore so this isn’t a drunk post lol!!) xxxx

Anonymouses 🐭

Someone just donated for raffle tickets and a donation but it was anonymous...... let me know who you are or else I can’t put your ticket stubs into the raffle!!

Back to reality

So after a lovely week away, we’re home and knee deep in the final preparations for the charity gig on Saturday night. 

Our week away was a great opportunity for hubby and I to chill out and spend quality time together. We seized every moment. The best part was all the unplanned exploring. We covered 716 miles and passed through around 16 counties!! 

Our first night was spent with wonderful friends in Fermanagh..... probably the best ‘free B&B’ I’ve ever stayed in and the best company you could ever ask for! From there we moved on for 3 nights in Galway City and then 2 in Athlone. Whilst these were our bases we (unsuccessfully) tried to outrun the stormy weather by driving to far flung places like the Cliffs of Moher and Cong (where The Quiet Man was filmed). It rained everywhere we went but we didn’t let it stand in the way of enjoying ourselves....... even though we knew the sun was splitting the skies at home! 

As ever I continued my ‘interacting with statues’ challenge set by a friend.......

The drive home was a long one but we broke it up by stopping for lunch with another great mate. Regardless, by the time we got home I was exhausted. 

My mood was soon lifted when hubby brought the post in and I opened a package from Nashville, Tennessee....... legendary guitarist Warner Hodges had sent me a load of goodies for our raffle being held at our charity rock gig night this day week. Don’t forget, you can attend the gig on Saturday 7th September at the Diamond Rock Club, Ahoghill from 16.30. There are 6 fantastic rock bands playing and every penny raised goes to Macmillan Cancer Care.

In order to make our raffle legal, hubby and I are now officially a Society, registered with the local Council....... after 23 years marriage lol. We’ve got some amazing prizes donated by a lot of wonderful companies and friends. Just a week to go and then we can enjoy a brilliant night of music and craic. Can’t wait! 

I’m also collecting for Macmillan for a few hours on my day off on Thursday in my local Marks and Spencer. It’s not much but it makes me feel like I’m doing my wee bit.

Fundraising can be hard work, but it’s so important to charities. Do your bit..... it’ll make you feel good! Oh and you are still very welcome to donate to my fundraising efforts at 

www.justgiving.com/fundraising/triciafest2 

Thanks to everyone who’s already done their bit <3 xxx

All sorted

The raffle debacle is all fixed. It cost hubby and I a few pounds but it was worth it to make it right. We had to scrap the old tickets and order new ones, we registered ourselves as a Society with the local Council and I spent yesterday afternoon putting tickets into envelopes for those who’ve already purchased. For every one bought they’re now getting five as we’re not allowed to sell them for more than £1 each but we’d originally priced them at £5 each. Thankfully nobody has been anything but supportive. 

It was great to get everything sorted out and we’re now getting ready to put a big push on for sale of gig tickets, t-shirts and raffle tickets. Dig deep! Every penny raised goes to Macmillan Cancer Care.

Donate at www.justgiving.com/fundraising/triciafest2 

On Friday I was at work for a few hours before heading for the Belfast train. It was an exciting yet daunting journey I was going on....... Macmillan had asked me to be filmed as part of a campaign they’re planning to run. I had to read out a thank you letter I’d written to my Macmillan nurse. No bother, I’d thought. I’ve done numerous presentations for my job, including an annual one to over 100 people. I’ve done an internal TEDTalk that was filmed. I’m not generally shy.......... 

I’d given myself loads of time. The plan was to get the train to Botanic where my son was meeting me. We then had 45 minutes to get some lunch and walk the 5 minute route to the studio. Easy. Except that I managed to miss my stop! Doh!! In my defence, the train really doesn’t stop at Botanic for long and, despite being at the doors while it was still stopped, no amount of button pressing was opening those train doors! And so I ended up getting off at City Hospital. 

No bother, I thought..... I’ll just get a taxi back to Botanic. I flagged one down and hopped in the passenger seat. “Ah you’re a superstar!”, I laughed, “I missed my stop. Can you just take me back to Botanic please?” The response wasn’t what I’d expected, “Erm, love, you’re not Gary” Do I look like flippin Gary?? “I’m not licensed to pick up customers on the street....... plus I’m booked. For Gary.” Double doh!! 

“Oops, sorry” Out I got and rang my son to tell him of my dilemma. He guided me down and we met up on the corner of the road where the filming was taking place. There was now no time for lunch so we headed straight to the studio. It worked out better as we were able to take our time over food afterwards.

It was a very hot day. By the time we got to our destination I was roasted and somewhat flustered. After hellos and a quick photo, I was taken into a small, hot studio with bright lights, and shown my ‘mark’. Then I was told to talk to the camera. Gah! This was nothing like presenting to an audience. There can be no ad-libbing or chuckles...... this is a serious letter, to be delivered seriously and exactly, while staring down a camera lense...... nerve wracking and I kept fluffing what I was saying. I suspect I could end up on the cutting room floor. But it was another experience. Another strange experience in a life that has become full of strange experiences! I’d love another go at it now that I know what to expect.....but life doesn’t work like that! Maybe it’ll be used, maybe it won’t, but it’s another thing I’ve done!

It was a big week...... busy at work, fundraising hassles, two train journeys to Belfast, filming....... by Friday night I was exhausted. Heavy, muggy weather didn’t help. Thunder headaches have been punching me in the brain much of the week :(

This morning I woke up to black clouds and heavy showers. I told hubby I wasn’t going to sea swim this week and he kindly brought me a cup of tea in bed. After a while I realised a sea swim was exactly what I needed. Hubby agreed and I texted my wee sea swimming pal who agreed she needed a dip too. 

Best. Decision. Ever!! Yes the tide was high. Yes there were big waves. Yes, it poured with rain. But there’s actually nothing nicer than sea swimming in the rain. Sure you’re soaked anyway! It’s invigorating and I don’t think there are many better ways to feel alive. The waves weren’t breaking so they just lifted us up gently. It was exhilarating and refreshing and just wonderful. The high tide was pushing us all into each other; my friend described us like rubber ducks, thrown into the sea and all bobbing about in a big group! We laughed, we shouted out, we cheered each other on..... a group of around 60 or 70 people, largely strangers, enjoying sharing a wonderful experience together. No airs or graces. We were all in it together. Glorious. 

Now I’m home, looking forward to 2 weeks off work. There’s a Foo Fighters gig, a physio appointment,  an oncology appointment....... and then a week away with hubby. Nothing but very loose plans, nice hotels and an Irish adventure ahead :) 

Living with xxx

Surmountable problems

You know when everything is going swimmingly and then something happens to give you a right old kick?? Following my visit to the Causeway Hospital and all the plans for The Riverbank Room, I was on a high. This year’s fundraising gig is coming up on Saturday 7th September and plans were already well underway. Motivated by seeing outcomes from last year’s fundraising, we went at final plans full tilt......

 I ordered 300 customised raffle tickets which we decided to sell for £5 a ticket because the prizes are so good. I sought permission at work to circulate an email about the gig, raffle tickets etc. Permission granted. Email sent. Orders started to come in and it was all looking great. The tickets arrived and looked fab. Well worth the money spent.

Roll forward a few days........ my phone at work rings. A staff member introduces himself and tells me we can’t sell raffle tickets for £5. In fact, we can’t sell raffle tickets outside the gig without registering as a ‘Society’ with our local Council........ Cue panic. And, I’ll admit, a few tears. How could I not have known? It hadn’t even crossed our minds......

The Betting, Gaming, Lotteries and Amusements (Northern Ireland) Order 1985. Goddamn you! I understand the reasons why such legislation exists but it felt horribly disheartening and needlessly complicated when I was first hit with it. Not to mention embarrassing. Further compounded by the fact that the humiliation and frustration of realising I’d made something of a hash, made me shed a few tears. 

The voice on the phone was perfectly polite and reasonable and said he’d meet to help me go through it all. He tried to reassure me but I was devastated. I was already tired due to a busy day at work and this seemed like one thump too many. In my distress I reached out to someone in authority and asked her to sit in on the meeting, which she kindly agreed to do. 

I came home from work that day exhausted. A situation not helped by inclement weather...... as I’ve mentioned before, I’m prone to ‘thunder headaches’ brought on by thunder and lightning storms that can make it hard for me to think straight. I haven’t had one in ages so to get one when I was already having a fairly crap day was really tough going. 

The next day didn’t see much improvement in my physical or mental state..... I’d hardly slept, my head was bouncing and I was stressed to the hilt. Thankfully Friday was my scheduled day off work, as was Monday this week, so I had a 4 day weekend to try and calm things down. And hope for an improvement in the weather.

Over the long weekend hubby and I worked to fix me physically and mentally, as well as fix the potential raffle disaster...... I researched the relevant legislation, I filled in the forms to put in to the Council. After 23 years of marriage, we prepared ourselves to become a Society!! We drafted new raffle tickets and got a price for printing them. We took a few walks in the fresh air and I got early nights and worked on relaxation. 

On Sunday my darling son and his girlfriend came to stay for a few nights and that helped further take my mind away from the raffle debacle. Gradually I put things into perspective. I realised it could be easily fixed. Yes, it’s a bit embarrassing, but in reality everyone who’d already paid for tickets was now going to get five entries for every one ticket they’d been willing to pay for. Considering the prizes include two tickets to an Ulster rugby match and two tickets to see Rod Stewart in concert, I’d say that’s a total bargain! I felt confident people would understand and actually probably be happy. I was proved right when I started the unenviable task of telling people what was going on, whilst reassuring them every penny goes to Macmillan and the only really change for them is that they get more chances to win.

For us the outcome is a little different...... we’ve paid for raffle tickets that will have to be destroyed, we’ve paid to register ourselves as a Society and we’ve paid to get more raffle tickets printed (and we obviously need a lot more than previously ordered because they’re now only £1 a go rather than £5, so people are buying more). So it’s cost us a few pounds but do you know what? It doesn’t matter. It’s fixed, the stress is removed, all’s well that ends well. We are unlikely to raise as much this year due to not having another sister to marry off and be wonderful enough to ask for donations in lieu of wedding gifts! But whatever we raise will help local cancer patients and their families, and that’s enough for me. 

To quote Charles Dickens, sometimes “the law is an ass...”.  

Or, to be less pretentious; to quote The Clash and Judas Priest and every other band that’s ever covered it “I fought the law [kind of] and the law [rightly] won!!”

“Which is the way he wants it. Well, he gets it.” Cool Hand Luke (and Guns n Roses Civil War!) I mightn’t like it any more than you do, but the rules (whilst they might be annoying for the honest) are there for a reason.

*walks away whistling like Axl* (if you get it then you get it lol) 

Bring on the fundraising!! Xx

The good times continue

Yes, yes, I know we do far too much, but sometimes it’s worth it! Last weekend we had a great night in Belfast watching Rival Sons at the Limelight.......

What

A

Gig!!

Very quirky frontman, wearing garish trousers that were far too tight....... a bit like a cross between Laurence Llewelyn-Bowen mashed up with  Jim Morrison! But it worked lol. They rocked the house and the frontman was almost hypnotic!

This weekend we had another gig on Saturday night. We went for a post work sea swim on Friday evening and then headed to Dungannon on Saturday for this week’s live music fix. An all day charity event featuring some brilliant bands. The venue was incredible and we had a great time! There was much singing and dancing....... even hubby had his happy feet on, thanks to beer, Trucker Diablo, the Pat McManus Band, Blackwater Conspiracy, an excellent Queen tribute band and the Quireboys..... He was busting the moves!

We had the company of the best friends and even got a wee trip backstage afterwards. Great company, great bands, great friends...... who could ask for more??

Even our B&B was perfect. Overlooking a Lough, the views were fantastic and it was quiet and peaceful. The owners were lovely and their surname made me seriously wonder about the serendipity that seems to continue to weave its way through my new life....... 

Mr and Mrs Badger?? Seriously!! Our own little Wind in the Willows break. <3 

Breakthrough!!

As you may know, my family and friends (you lot!!) helped raise almost £9,000 for Macmillan Cancer Care last May (2018).  This handsome sum was raised through a charity rock gig (including sale of t-shirts and an auction/raffle) and also through my amazing sister and brother in law getting married and forfeiting gifts for donations. 

From the outset I was determined that the money should come back to Causeway Hospital...... the people who initially looked after me and who a year later saved my life again when I experienced toxicity due to a medication. The team at Causeway Hospital are amazing. From A&E that I’ve had to visit a few times, through to the Rehab Ward I was housed in twice. Not to mention my hero Macmillan Nurse, Terry McVeigh. 

It’s taken a while and there has been some serious head pecking but I am delighted to now be able to tell you all that your generous donations are about to result in the renovation of a family room in the Causeway Hospital Medical Wards. It should also fund some recliner chairs for the Rehab Ward. These will allow patients’ families a comfortable place to sit or lie down and get a rest. 

Today I was taken on a visit to see the room to be renovated and was asked my opinion on colour scheme/themes. It will come as no surprise to those who know me best that I have asked the room be called “The Riverbank Room” and the theme be based around ‘The Wind in the Willows’ book by Kenneth Grahame. My favourite book includes three geographic areas -

• The Riverbank - where everything is peaceful and the animals spend their days in boats, messing about on the river. Where “Nothing seems really to matter, that’s the charm of it.”
• The Wild Wood - where there are some troublesome characters like stoats, squirrels and rabbits (who’re known to be “a mixed lot”). “We don’t go there very much, we river-bankers”.
• The Wide World - “And that’s something that doesn’t matter, either to you or me. I’ve never been there, and I’m never going, nor you either, if you’ve got any sense at all.”

Naming the room The Riverbank makes total sense to me. A place of calm and relaxation. Thankfully those looking after the project in the hospital were in complete agreement. There was great excitement as they asked me to get involved with picking colour schemes and artwork. It’s going to be beautiful! Photos to follow once it’s all complete.

This is a massive achievement and I am absolutely overjoyed! We did this!! A somewhat random bunch of family, friends, rock bands, and music lovers got together and have made a difference! 

To every last one of you - the bands that gave their time and energy, the venue and those that run it, everyone who donated an auction/raffle prize, everyone who donated and/or attended the gig, my sister, brother in law and wedding guests. YOU HAVE DONE THIS! This wonderful thing that will make such a difference to patients and their families. Put a proud smile on your faces because you’ve proved there is so much good in the world.

BE PART OF SOMETHING SPECIAL

triciafest2 takes place on Saturday 7th September in the Diamond Rock Club, Ahoghill. 

• Donate auction/raffle prizes - comment on this blog, contact me via Facebook or at tricia.roulston@btinternet.com
• Tickets - www.wegottickets.com/event/463070
• Belfast bus transport to&from gig- www.wegottickets.com/event/463071
• Donate- www.justgiving.com/fundraising/triciafest2 

Heed the siren’s call

The past few weeks sea bathing conditions have been a joy. The weather has been good and the sea calm. Last week we enjoyed a wonderful dip with friends from Craigavon and Fermànagh. My wee sea bathing bestie was away in Portnoo swimming with seals, but a different motley crew stepped in take her place! Great friends, great people, great times :)

The siren has called us to the sea and we have followed.

This week my wee bestie was back, hubby was by our side as always,  and we had another addition in the form of a friend back from Leeds for the weekend. A former lifeguard, his pride was at stake so he ran from Coleraine to Portrush..... yes, ran......on his feet......like Forrest flippin’ Gump...... and then got into the ice cold sea!! What a legend! Like so many others, he completely ‘got it’. He felt the same exhilaration we keep describing and came out saying he felt quite proud of himself. I feel like that almost every week! I still get a feeling of mild hysteria when I first get fully immersed...... it manifests in shrieks of laughter and overwhelmed tears in my eyes. There’s nothing quite like it...... a mix of being freezing, miserable, delighted and proud all at once. My senses heightened by the cold water and the beauty all around me. Seemingly conflicting emotions roll together to leave me feeling wide awake and ALIVE! 

Portrush is absolutely buzzing at the moment. Today is the final day of the Open Golf Championship; the first time is has been held here since 1951. After a week of our beautiful coastline being showcased to visitors and TV viewers from across the world, today it comes to an end. Yesterday afternoon hubby and I went down and soaked up some of the atmosphere and the place was still full of energy this morning. 

I have a Neurology appointment on Thursday that is nagging slightly at the back of my mind, but i already know my scan results show everything is ‘very settled and very quiet’ so that takes some of the anxiety away. My aim now is to try and get my driving licence back. I’m almost a year seizure free and feel generally good. It’d be great to get my independence back a bit more. I like my life the way it is. I like spending quality time with hubby, family and friends. I can get to and from work and I’m fit enough to get buses and trains when hubby or friends can’t take me places. But it can be surprisingly annoying when you can’t jump into the car when you want to. 

My pedometer is starting to build up the steps..... to my annoyance my record day remains the day before my grand mal seizure, but my top weeks are now within the past few months. I’m continuing to build physical strength, I think I’ve more or less found my way at work again, and I’m more happy and relaxed than I think I’ve ever been in my life. I know who my tribe are. I know who has my back. I know who I want to be around and what I want to spend my time doing. It’s taken serious trauma, but I think I finally know who I am. 

Living with? You betcha. Living with and dancing like there’s a Bruno Mars song constantly playing in my head lol  xx

Sunday happiness!

Anyone who reads this blog of mostly nonsense will know of my newfound passion for sea bathing. I say newfound, but today marked a very special event...... today hubby and I picked up our certificates for one year of sea swims!! The rule is that you have to dip at least once a month for a full year and then you’re a full member of the group. Today was that day for us! One year done!!

I was ridiculously excited to receive my certificate.... I even found myself wiping a wee tear from my eye. To some it’s just a certificate but to me it is much, much more. It’s proof. Proof of life, determination, the support of family and friends and proof that I’m still capable of doing things! In my eyes I may as well have been awarded a superhero cape! I am simply overjoyed!!

After getting dressed I walked out of the Arcadia to see hubby talking to a man who looked vaguely familiar. A few months ago we watched a series on BBC about five couples who were taken to London and given the price of a flight to Singapore.......they were then challenged to get there within that budget without taking any flights. It was called “Race Across the World” and we thoroughly enjoyed it. We were rooting for the oldest couple to take part......retired PE teachers, Tony and Elaine. We’d admired their tenacity and the fact that they were determined to keep going, despite it being really tough and being up against younger couples. What’s the odds they’d be on a short break in Portrush and that hubby would recognise them?? We had a brief chat and had the opportunity to tell them of our admiration and how much we’d enjoyed watching their journey and, ultimately, their win as they reached Singapore ahead of the five other couples.

In yet more of my wonderful life twists, I walked away from my certificate presentation and met a fellow brain tumourette and former wardmate with her mum. She too is doing brilliantly and we’ve both come such a long way in the past two and a bit years. It’s wonderful. 

After all the excitement hubby and I celebrated with a big breakfast and then a walk with ice creams! Sunday’s don’t get much better than this. 

Living with?? Kicking ass!! Xx

Don’t jump!!

This week has been a good week. On Wednesday night we went to see Glen Hansard and Eddie Vedder (Pearl Jam) in Dublin. What a show! Mr V even included a tribute to Tom Petty and played one of my favourites, Wild Flowers. I think I may have quoted from it previously in this blog...... 

After Dublin we headed to Drogheda where we rendezvoused with our son. He’ll be 21 this year so it’s not often we get family time away with him. We had one night in a lovely hotel and did all the Boyne Valley tourist stuff, including the fascinating Newgrange monument. I didn’t go inside...... the words “narrow tunnel that gets narrower the further in you go” combined with “one way in and one way out” and “single file” on a  wry hot day made my decision very easy!! Instead I wandered outside while the boys went in. After their tour I asked a lovely guide called Mary if I could just look in the front entryway but not go into the chamber. She persuaded me to go about a metre inside the passage so she could show me where the sun shines in above the entryway. It reflects down the passage and into the chamber, lighting it up at certain times of year and with the right conditions. It was fascinating but a metre was far enough for me!

After our overnight stay we headed northwards to do our Meet the Parents. Our son and his girlfriend have been seeing each other for over a year now so the time had come. We met her mum and thankfully it was all very easy and natural. 

This morning I was enjoying the fact that we’d had a lovely break but it was still only Saturday! Gotta love a short break from work!! Hubby dropped me in Portstewart to get my hair cut and while I was waiting for him to collect me I decided to have a dander along past the Herring Pond and up the Harbour Hill. During rebellious teenage years this would’ve been a favoured spot to (illegally) share a few drinks with mates on a sunny evening..... away from parents’ eyes and feeling very grown up and cool! Today I found it much more pleasant just to wander, enjoying the sea breeze and watching the waves.

When I reached the top of the hill I noticed a young fella, probably in his 20s, sitting on the grass close to the edge of the cliff. I briefly wondered if he was ok but just then hubby arrived. As we drove away we both commented on the lad sitting looking out to sea. Unable to shake a nagging worry, I asked to be taken back as I felt I wouldn’t settle unless I knew he was ok. As I walked towards him I started to worry that maybe sneaking up behind him might be a bad idea...... I also worried I might say the wrong thing. I almost turned around but couldn’t bring myself to. I called over to him “Excuse me?” but he didn’t turn around..... “Hello?”....... still no reaction. Then I realised he had earbuds in. I went a little closer and called louder “Excuse me!” He turned and said “Oh, hi!” in a thick accent. I asked him if he was ok. He laughed and said he was, that he was just enjoying watching the sea and not to worry, he wasn’t planning on jumping! We laughed about my cautious approach and my fear that speaking to him might actually make him jump!! It turned out he’s from Paris and is over visiting friends. He was simply enjoying the fresh air and watching the sea. He was very pleasant and said it was lovely that I checked on him, even though he was fine. He said he didn’t think the same would happen in France. 

Hubby rewarded my stupidity by taking me for lunch by the beach and then we came home and watched a daft but quite entertaining film. 

Sometimes we forget how lucky we are to live in our wee country. Northern Ireland may have its issues but it’s also beautiful and full of friendly folk. I might’ve been wrong about my French friend, and I don’t really know what I’d have said if he actually had been suicidal, but I can go to bed tonight unworried. I may even see him again tomorrow morning as we were talking about the beauty of the sea and I told him about  Sunday morning sea bathing! Who knows...? Either way, I’ll rest easy tonight.

Reach out to people. It doesn’t take much. I certainly didn’t save a life today, but hopefully I showed a visitor that NI is one of the friendliest places on earth!! Xx

The bird in my attic!!

It seems somebody somewhere decided rumours of my death should be well and truly ass kicked....!! 

Yesterday morning hubby and I got up and did a few messages before arriving home to find a letter. Seeing the hospital mark on the envelope I thought it was an appointment. Turns out it was an update.......

My Oncologist is brilliant at sending reassuring letters after scans. He clearly understands the concept of scanxiety...... the build up to a scan and then the wait to see your Oncologist to find out the results and the anxiety this causes. He always takes a few minutes to dictate a letter about my results and gets it sent to me within a short period of time. The only risk with this practice is if a letter didn’t appear I’d know the news was bad and had to be given face to face...... fortunately, to date, this hasn’t happened to me. 

Yesterday’s letter was another example of why these letters rock!! 

“everything looks very settled”.....”no signs of a return”..... “all looks very quiet and settled” 

This is amazing news!! I can’t wait for my appointment so I can hear more! 

As always, I’m not naive. I’m not cured and I know there’s still a big beastly tumour in there. But there’s been a big beastly tumour in there for years...... we just didn’t know until it got angry. I know I can live a normal life with it because I did it for years and years. Learning to live a quieter life, making time for relaxation with family, friends and my ‘gurus’, can only help. Plus I’ve had treatment to get rid of the angry bit and, between it all, it’s worked!! 

Yeah sure there’s still something in there that shouldn’t be there, but now it’s like a bird that builds a nest in your attic. Sometimes you hear a tweet or a scratch, but generally you don’t really know it’s there. If it gets excited and flaps its wings then it might be uncomfortable, but it shouldn’t do that unless I do too much in the house and disturb it....... if I keep things quiet and gentle then we’ll just live together. For many years. Like normal folk. Sometimes it even enhances your life by singing and reminding you how lucky you are to have a bird living quietly in your attic but choosing not to peck at your insulation or crap on your joists lol!!

Dead?? I think not. Not by a long shot! Suck on that idle gossipers!

Living with (and kicking ass!)...... xx

Summer’s here!

Welcome to summer!! Today is the longest day of the year and what better way to celebrate it than an evening sea dip??

Earlier this afternoon I was in work, looking out at the sunshine and lamenting the fact that we will miss our sea swim on Sunday....... when hubby texted...... equally inspired by the good weather, he suggested a post work sea swim. 

I’ve always been a bit rubbish at doing things outside of routine. Sunday morning is for sea swimming...... and the thought of doing it on Friday evening seemed fun!

As soon as I got home I got myself into my swimsuit and waited for hubby..... He finishes later than me and it felt like the longest wait ever! Finally he walked through the door and in super fast time we had thrown towels into a bag and were ready to go.

We jumped in the car and headed to Portrush. Unlike on a Sunday morning, the Arcadia beach was deserted. There were a few people surfing off the East Strand, but the ‘ladies beach’ had nobody on it. We got in quickly and I was soon shrieking and laughing like a child who was in the sea for the first time! The conditions were amazing....... waves but not too big. Hubby doesn’t like to stay in too long but I was enjoying myself too much to get out too soon. I stayed in on my own, enjoying being gently lifted by the waves and laughing loudly to myself. It was so exhilarating. 

There were a few people on the path above the beach and I’m sure they wondered what this crazy woman was doing, being carried towards the beach by waves and then swimming gracelessly (nope, not a typo lol!) back out a bit further. It felt like rule breaking because there was no-one else there. Like skinny dipping but in a swimsuit.....!! I was squealing and laughing loudly at the sheer joy of it! 

I’d imagine the wedding party in the restaurant looking down to the beach we’re delighted to see me finally wade out of the water, looking I’d imagine more like a seal than Ursula Andress!! 

It’s not much of a rebellion but God it felt good :) These are the things that life is all about. On a natural high!

Living life and dispelling rumours

It’s been a busy week, full of lots of good things but a little bit of less good.......

Both hubby and I took an extra day off work this week so we could go to the Slash gig in Ormeau Park. Thanks to a cool friend we got into the VIP tent; keeping us out of the rain and, more importantly, allowing me a seat whether I needed it........ I’m loving being back at gigs, but standing all night is still a bit much for me. We still got soaked walking to and from the gig, but it was great to enjoy time with our son and some good mates. 

We stayed up in Belfast that night and the next morning headed to the City Hospital for my routine MRI scan. I was having some scanxiety as usual..... it was particularly stressful this time as I had an appointment with Infusion Services beforehand to allow a cannula to be put into my very unhappy veins. Without this, I can’t get a fully detailed scan done as it requires the injection of special dye. At my last scan they hadn’t managed to find a vein so, despite my Oncologist being confident my ‘half scan’ still showed stability, i was keen to get a full scan this time so I’d feel more reassured. I felt under pressure..... would my veins behave? Would infusion services have to go into some rare vein like my jugular or something? Yikes! I knew it would hurt and it did. But in fairness it wasn’t as bad as I thought it’d be...... There were a few tears but mostly due to anxiety and the build up. And tiredness....... I told the nurse not to feel too sorry for me as part of my upset was because I was tired from being at the Slash gig the night before!! So the scan went ahead and now I have begun the long wait for the results......but I remain optimistic.

Fresh from our Belfast adventure I went back to work on Friday, before heading out again on Friday night. We were going to a gig being held fairly locally. Honestly, I was tired and couldn’t be bothered..... but I knew it was all seated in a great venue and we were taking a wonderful lady I met through sea swimming and her great-grand-niece from Australia. So off out we went.... what a great night! My 71 year old friend and I even managed a bit of dancing! 

Imagine my surprise when I came home in great form only to see a message from someone I used to work with, essentially asking if I was dead or not!.... “.....mentioned that you were dead but I thought you were still alive. Can you confirm who’s right to settle an argument???!!!!” I answered politely that I was very much alive but then stewed over it overnight. Truthfully I’m still stewing a bit 2 days later..... the person who had said I was dead is someone I don’t even know and she said it in front of someone who used to work in the office I managed so she was given a terrible fright. This wasn’t a concerned person wondering if I was ok...... this was idle gossip by someone who doesn’t know me and didn’t know what they were talking about. Followed by a tactless message which caused further annoyance. Thankfully another person with the group knows me and was able to quell the rumour. I’m still annoyed it happened but I guess it’s just a stark reminder that there are still some gossiping fools out there! 

As well as spending some time ‘chuntering’ about idiots, we also came home to a lovely updated en suite (long overdue!) and a plush new bedroom carpet. Not so good though was the packing in of our central heating...... goddamnit! As always shining stars came to the rescue as a friend came straight away and fixed it. As well as keeping me warm, this couple reminded me of all the good people around us. Somewhat counteracting the frustration caused by the gossiping fools. 

This morning brought my weekly sea swim day. One of my best mates is home from a foreign holiday so it was great to get in the sea with her...... even though she looked even more gorgeous than ever with her Italian tan! It was another invigorating and life affirming swim. Even the walk back to the car was filled with joy...... first we saw a couple who we’d given home made caramel squares to last week (there had been a ‘bring and share’ event after last week’s sea swimming)....... and then I saw something somewhat unusual. I saw a couple walking out of the driveway of a nursing home with what looked like a black and white lamb in the lady’s arms..... surely not..... it must’ve been a dog?...... As we neared them I asked hubby to look...... sure enough, it was a lamb! We stopped and spoke to the couple who told us they had taken it in for the older people to see and pet. What a wonderful idea! I’d never touched a lamb before..... it’s a bit stupid to say I was surprised by it feeling so woolly, but I was!! The lady passed in to me through my open car window and I held it for a few minutes, admiring its cuteness. Then it gave a wee bleat so I handed it back to its ‘mum’ who has been hand raising it. Happiness levels replenished!!

It remains the simple things that keep me smiling; my family, my friends, music, dancing, the sea and even a cute wee lamb......

” Reports of my death have been greatly exaggerated!”

Mark Twain 

Happy :)

“Clap along if you know what happiness is to you
(Because I'm happy)
Clap along if you feel like that's what you wanna do”

‘Happy’ by Pharell Williams

Today I am happy! It’s fair to say that I’m often happy, but today has been a particularly happy day.....

Family, close friends, and the resilient long term blog readers will know I spent more time in hospital a year after my initial diagnosis due to an unfortunate incidence of drug toxicity. This incident has probably left more, or certainly equally as many, mental scars as my original diagnosis and treatment has. My poor husband was dispatched to ‘prepare the family’ with the sobering news that I probably had about four days to live. Nobody knew why I’d suddenly taken such a turn for the worse. Oncology and Neurology couldn’t come up with any suggestions, but a Consultant in my local hospital kept trying. At her side was a Macmillan nurse. He kept working and trying to figure out what was going on. As I slipped in and out of consciousness, that nurse asked the question “Has anyone checked her phenytoin levels?” 

That question led to the discovery of phenytoin toxicity. 

That discovery saved my life. 

That nurse saved my life.

Last night in a ceremony in a posh hotel just outside Belfast, my nurse hero won the Patient’s Choice Award at the Royal College of Nursing Nurse of the Year Awards. This morning that sweet and humble man told me “This award was for you”. This award was most definitely not for me. This award was for a dedicated and special nurse who I will never be able to adequately thank. 

It takes very little time to help enter someone for an award or recognition of some type. As someone who’s received an honour and also had the honour of contributing to someone else’s nomination for an award, I can assure you that there is no feeling like it. Trust me, it’ll make you happy.

It doesn’t have to be as dramatic as saving someone’s life and it doesn’t have to be as grand as trophies or medals. A card, a letter or email to their boss, flowers, a book, a simple ‘thank you’ can be enough.

Honour those who do good things because there are many decent people in this world who could go unnoticed due to our busy schedules. 

Take some time today to show someone you appreciate them. It’ll make you happy too. Put on your dancing shoes and......

“Clap along if you feel like happiness is the truth”!! Xx

Dispatches.....

“I hope this gets me a mention in dispatches”, my sister told me this morning, through trembling lips. We were swimming in the chilly North Atlantic at the time, alongside my friend of 30 years. Well here’s your mention as promised.... ;) 

It’s been quite a week in our house. On Monday night I managed to somehow fall out of bed and thump my head off the floor....... almost a week later there’s still a tender patch on my forehead; now a charming shade of greenie-yellow! I’m partially blaming hubby because he was running a fever and I’d woken up roasted!! It took us a couple of days to feel content that I was fine and hubby had food poisoning from a dodgy lunch he’d made himself in the back of his work van..... Sure I couldn’t be outdone by an unwell husband; so I had to headbutt the floor for attention..... 

This morning dawned blustery and rainy. Hubby is now feeling better after a miserable week, so he was rewarded by taking me down for a sea dip. At least I had a couple of my home-girls there so he could enjoy a coffee and not have to join me in the water! Though it was glorious today. The past 3 weeks have been perfect conditions; cold but low waves, allowing us to bob rather than get sea slapped! My type of sea :) Today was even better due to the company. I had my home-girls in the water and my hubby Support Team on the shore, and perfect conditions to absorb all the benefits of Vitamin Sea.

There you go big sis...... mentioned in dispatches. And Happy Anniversary!! This time last year was another big moment as we celebrated your wedding to a great guy who we all love. May is a good month. Spring time regeneration!! Xxx

It’s a new day, it’s a new dawn.....

Tomorrow marks the start of yet another chapter. I waited 7 months for an ‘urgent’ rheumatology appointment and, shortly after I finally had it, I came home from London to a letter telling me I had hypothyroidism. Up until now I’d just assumed fatigue and muscle/joint pains were going to be part and parcel of living with a brain tumour. I suspected the phenytoin poisoning and way too long on steroids had played a part and hoped time would resolve things, but was a bit concerned this would be my life now. 

This new, additional diagnosis was a blow and there were tears on Sunday morning as it started to sink in. Mostly I was frustrated that I have another thing to deal with, but also thyroid problems feel a bit ‘old woman-y’ to me...... So I had my cry and talked things through with hubby. He dispensed reassuring words and hubby hugs and promptly took me to have a sea dip. I came out of the water in a much better mind space.

Today I reluctantly added two extra tablets to my daily pill boxes. After seeing a GP, I was persuaded to try the lowest dose of thyroid medication you can take along with an iron tablet daily. I take the first doses tomorrow. I don’t want to but I also don’t want to live with constant aches and pains that I may be putting up with unnecessarily.

Wish me luck..... another hurdle but hopefully I’ll leapfrog it quickly! Living with..... xx

London baby!

We’re at Gatwick, waiting to come home after 4 nights in London. It was a very special trip that we enjoyed, but it also taught me that I’m definitely not a city girl. I used to find London exciting, but this trip I’ve spent much time craving space and fresh air. 

It all started well..... We were walking out the door when my phone rang and a nurse told me my next scan date. Not long to wait; this is good as it allows for reassurance. Then we met the actor James Nesbitt at the airport and had a great chat. We covered sea bathing, growing up in Coleraine and the triangle area and politics. All of which took my mind off the fact that I was about to get into a plane for the first time since my diagnosis. Thankfully the flight went smoothly. I wasn’t entirely comfortable but I was able to keep any nerves in check and thankfully  my head didn’t explode! Result!!

The journey into London was fairly challenging and not much fun. The drive to the airport, flight, navigating around Gatwick and then getting the Express followed by a tube took most of the day. We arrived exhausted but I felt a sense of achievement from having done it! That evening we just took a walk around the area we were staying in (Leicester Square) and got food.

The next day was the big day! Garden Party day!! We spent the morning wandering nearby before heading back to our hotel to get ready. It was easy to feel a bit wick, walking out of a Premier Inn dressed to the nine’s, including fancy fascinator, but it was fun. We decided to get a taxi ...... the palace encourage you arrive by public transport but there was no way I was getting on a dirty tube in a pretty dress and open toed sandals!! We arrived at Buckingham Palace and spent a surreal few hours pretending to be posh ;) It was a great experience but involved a LOT of standing around. Great for people watching!

That evening we performed a very quick change into jeans and headed out to meet friends for dinner. They had also been to the garden party and we had a great catch up. 

The next day my wee legs and feet were screaming. It was a beautiful day so we headed to Hyde Park. Unfortunately boat trips on the Serpentine weren’t running, but we enjoyed a lovely walk and a toe dip in Diana’s fountain. Not quite the same as the sea, but great for weary feet!

That night we saw Wicked. I’d seen it before but enjoyed it just as much this time around. 

We’ve had a brilliant few days and it was cool to feel special at Buckingham Palace, but it also made us accept that we both find no appeal in visiting cities these days. We enjoyed ourselves but are both glad to be heading home. We crave peace and quiet, our own bed and, most of all, fresh air! We have a few overnights planned for gigs in Dublin and Belfast over the next few months, but other than that we’re just looking forward to a few nights in Galway and Athlone at a much slower pace. 

Life is short but it doesn’t need to be lived at break neck speed. I don’t want or need a fast paced life. I enjoyed London but there’s no place like home.....

Going back to nature

“Water quiets all the noise, all the distractions, and connects you to your own thoughts.”

From Blue Mind book by Wallace J. Nichols

I ki I know that science and trained doctors saved my life. Surgeries, radiotherapy and chemotherapy undoubtedly calmed a life threatening situation. BUT....... medications have also been responsible for putting me within a few days of death. They left my physical body battered and my emotional mind wrecked. Over the past 2 years and 5 months I’ve spent much of my time recovering; both physically and emotionally. I’ve still got a big old brain tumour but it appears to be behaving itself at the current time. After treatment, I put this good behaviour down to alternative therapies and staying positive.

This weekend has been a perfect example of how to spend quality time, working on keeping the mind calm. On Tuesday I am travelling to London. I’m excited because I’m attending a Garden Party at Buckingham Palace, after receiving my BEM. This still feels a bit surreal..... earlier hubby said to me “Imagine two wee eedjits from Coleraine going to Buckingham Palace!!” I pointed out it was even worse.... with one of us actually from Derry and the other from Glasgow!! Common as muck haha.  

So I’m very excited about our trip BUT it’s the first time I’ve flown since being diagnosed and I’m terrified of the flight. Despite being cleared by all the medical professionals, I still hold a fear that the change in air pressure will lead to my head exploding! 

In a bid to keep me calm, on Thursday night I added kineastheology to my list of alternative therapies and am now armed with calming essential oil to rub into my palms pre flight to keep me calm. Tomorrow I have a hypnotherapy session planned. This weekend I went full on nature! Yesterday we went to Portglenone Forest, which was absolutely beautiful....... bluebells, beautiful wildflowers and trees, butterflies, birds singing and even a riverbank. 

As we stood watching the river flow by, I was admiring a black lab who’s owner was throwing a stick into the water. The dog was having a great time, swimming out and bringing it back to be thrown again. The lady and I began to chat about the joys of having dogs and she told me about her sister, who....... yep, you’ve guessed it........has a brain tumour! How does this just keep happening to me? Only a couple of weeks ago I met a lady in a cafe who I hadn’t seen in years. I spoke to her and we had a chat. I told her who I was (I knew she’d remember my parents) and that I remembered her and her husband walking up and down our road when I was a kid. She remembered our family and gave me a hug to thank me for taking the time to speak to her. Then she told me about her husband and the fact that he’d been living with a brain tumour for a number of years now! Either the number of people with brain tumours is increasing or else some sort of strange energy is drawing me to people who have been touched by one. It’s strange yet comforting.....

This morning was sea swim Sunday; my favourite day of the week! Conditions were perfect. I even had on my new swimsuit, which I’m happy to report is two sizes smaller than the last one! Finally fighting back from steroid chubbiness!! As I walked into the surf with my friend of around 30 years, we gasped and shouted out at the coldness of the water. But soon we were in. That initial immersion felt so good that I found myself laughing and crying all at once. Bobbing in the calm sea and enjoying the unique freedom that comes from outdoor swimming always leaves me a bit overwhelmed. It’s a combination of feeling proud I’m in, feeling all my aches and pains taken away by being weightless in the water and the joy of being in nature. We stayed in for ages; neither of us wanting the dip to end.  Eventually I told my friend that hubby would be giving off because I’d been in so long...... he worries about me getting too cold. Sure enough, I looked up to the Arcadia and saw hubby and two friends signalling me to come out. I laughed “Come in number 6, your time is up!” but knew they were right. Out we got, hugging goodbye and declaring our love for each. 

It’s wonderful to have a friend that shares your love of the sea. We’ve even booked to go on a boat trip later in the summer. This is our third attempt at a relaxing boat trip. The first time we booked to sail to Islay but a storm stopped our plans. Then we booked a whale and dolphin watching trip, only to end up drenched by torrential rain and 10 foot high waves crashing over the boat. When asked if we’d seen anything, I’d replied “Only our lives.... flashing before our eyes!!” This one will hopefully be third time lucky.

“Hark now hear the sailors cry,

Smell the sea and feel the sky.

Let your soul and spirit cry, into the mystic.”

Van Morrison

 

I’ve 

Defying gravity

So today was the day........ another attempt at having blood taken, this time by a nurse in my GP’s surgery. I’ll admit to being very skeptical. After recent failed attempts to find a decent vein by at least six nurses and two doctors, I couldn’t see how my local GP Treatment Room nurses would fare any better. I’d popped my head in the other day and been confidently told not to worry; to wrap up warm, drink lots of water and make sure I’d eaten before my appointment.

Despite my attempts to be upbeat, I’ll admit now that nerves had hit me hard. I’ve had anxiety bubbling under the surface for days and there have been nightmares and cold sweats at bedtime. 

This morning I got up with my fighting head on. I was going to do everything in my power to try and make this happen. I took a wee bag, packed up with my lucky Buddhist blanket, water, fingerless gloves and a heat wrap, and headed into work early. In the office I got stuck into work, whilst drinking loads of water and doing everything I could to try and stay toasty warm. Thankfully my office-mate no longer bats an eyelid at anything I do, so seeing me sitting in a woolly hoodie, and fingerless gloves, with a heat wrap around the crook of my elbow whilst chugging down bottles of water was totally accepted! We sang along to Meat Loaf and calmed my nerves as best we could.

Then the time came. My phone rang and my friend told me she was outside. Yikes. Telling myself I was brave and could do this, I marched outside and we headed to the doctor’s. My heart was thumping but I was determined I wasn’t going to cry or make a fuss. Whatever would be, would be.

When we arrived I didn’t have to wait long. A no nonsense but friendly and reassuring nurse told me not to worry. She took me into a room and had a looker my arm, conceding they definitely weren’t great looking veins. She tried in the crook of my arm but had no luck. I hardly felt a thing. She told me she remained confident and that all I needed was the help of some warm water and gravity........ with that I was told to stand with my hands in a sink of warm water for 5 minutes. I watched in amazement as the veins in my hands started to become clearer; visibly rising up and thickening. On her return she sat me up on a bed and told me to hang my arm down. She reassured me some more and before I knew it there was blood flowing out of a vein in my hand with ease! 

She easily filled the requested four vials and kept reminding me..... “When you’re getting blood done, you need warm water and gravity. Never be afraid to tell whoever is taking it that that’s what you need. Remember; warm water and gravity.” What a superstar! I left her with a hug and some overwhelmed tears, before enjoying some time with two dear friends and getting home early to recover from the stress and worry I’d felt over what turned out to be basically a non event! Now I get to enjoy a long weekend off, as I’m not back in work until Tuesday. 

All in all an unexpectedly good day! I’ll end this update with some funny ‘mis-hears’that have made me giggle recently....... 

1. A few weeks ago a colleague was walking towards me in the corridor and said “Good morning Trish”. Somehow I heard “Hello gorgeous”!! Of course this is now how we always greet each other!

2. Last week we were chatting to an older man that my husband knows. He asked my name and I replied “Tricia”. He looked at me a bit quizzically and asked me to repeat it. I duly did so; “Oh” he laughed, “I thought you said Treasure!”

3. This morning as I walked into work a colleague came towards me in the corridor and started to whistle. “Ah, for second there I thought you were about to wolf whistle at me!” I laughed. Of course he then did exactly that, and again in the canteen later in the morning!

So, as a result of my sometimes dodgy hearing and a sense of humour,  I’m now a Gorgeous Treasure who gets wolf whistled at! Feminism be damned, that’s fine by me!! Xx