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

Keeping things chilled....

So what’s been happening? Plenty really.

I’ll start with the medical stuff, but with the important caveat that I’m still incredibly lucky to generally keep pretty well and what problems I have are definitely not beating me....... Medically I finally had my appointment with the Rheumatologist. Another ologist to add to my ever growing list..... An urgent referral took 7 months and I had to go to Antrim because there were no appointments closer to home. The outcome was somewhat uncertain. I may have lupus but it could just be post radiotherapy effects. Either way, my muscles and joints are in almost constant pain and have been for months. Too much or too little activity makes things even worse. It’s about doing just enough...... maybe pushing a tiny bit but not too much.......

Yet again I watched on as three nurses and a doctor all had a go at my veins, trying to get blood. No luck. I’ve to go to my GP Treatment Room on Thursday for them to have a go....... to say I’m dreading it doesn’t even come close. Thankfully I have a very special friend taking me for moral support. Hubby has to work but I had to admit to myself that I need help with this one.... I’m lucky I’ve plenty of shining stars to ask. One of my favourite people in the world, she will help me feel safe and no doubt dry my tears afterwards. In the bigger scheme of things I know that collapsed veins is not the worst I’ve dealt with but being poked with needles is stressful. And it hurts! Especially when it’s then abandoned with no success.

In order to try to ignore the medical stuff, I’ve been enjoying the Easter weekend. Following a bonus lunchtime get together with our son, we enjoyed a few days away in Dublin with my sister and brother in law. We delighted in open top bussing in the unusually hot sunshine, and it was great to spend time together. 

Today I find myself off work but alone..... highly unusual. I should enjoy it, I know. Unfortunately I now find myself quite averse to being on my own. I fear I’ve become a bit needy. Not to be defeated by the feelings of anxiety that I woke up with this morning, I decided to jump into the day. Music turned up loud I had a long, hot shower and took my time getting dressed. Then I took our dog for a short walk. She behaved beautifully for me and it was lovely to get some fresh air........ I never walk her on my own anymore, so I had the added bonus of feeling a bit of added independence in that simple act. 

Next, I tackled the main event of the day....... wardrobe sorting! Cancer treatment is cruel to your weight. I yo-yo’ed from a size 8 to a size 16 but am thankfully, slowly shrinking again now. As a result I gradually found myself with a very full sliderobe with all seasons in all sizes. The time had come......., with the small sizes and the big sizes all boxed away, I can now actually see what clothes I have that fit me! Needless to say I have loads but will no doubt stick to the usual favourites!!

So life goes on. I’m happy and laugh often, I’m fulfilled working 4 days a week and feel I’m still making my own small mark. I’ve loads of fun stuff planned; from a garden party at Buckingham Palace, to rock gigs aplenty, to a romantic getaway in Galway and Athlone. The sun is shining and spring has sprung. Sea bathing season is back and I can properly enjoy my weekly dips again. I’m learning to control any stress and anxiety through reiki and hypnotherapy, as well as time in nature and with my wonderful husband and friends. Life is good and I’m making sure I live it as well as I can with the people I love....... xx

Doing life right.....

Last Sunday I had a proper sea dip for the first time in ages. I’ve been in every month, because if  I don’t do at least dip every month for a year then I don’t  get to be an official Arcadia Bathing Club member. And I’m pig headed and refuse to be beaten! But I’ll admit that the cold weather was seeing me go in up to my chest at most and then run back out...... hey, don’t judge me, I did it!! Last week though the weather was glorious and the conditions perfect. It was bliss. 

This week conditions are somewhat different. It’s very windy and very cold. The sea is choppier and the water breathtakingly cold! But I’m addicted again. I want back the feeling I get from sea bathing in the warmer months. It’s April; the water is bound to be warmer than it seems..... surely?? I want a rerun of last week. So in I go.......

It strikes me now that this morning I did a great single person show of the Wizard of Oz........

I woke up like the heroes in the poppy field. Bleary eyed and tired after a fabulous night seeing Glen Hansard live last night. What a musician! Brilliant night.

As we walked down to the Arcadia I resembled the Tinman...... it’s cold and my joints were screaming. The wind is whistling around me like a tornado ready to lift me up and carry me away. Determined and helped by a great friend, I made my way to the sea with the enthusiasm of Toto. After walking up my yellow brick road beach, I waded in like Scarecrow....... wobbly legged, my breath often catching. I reached chest height sea and stood like the Cowardly Lion..... chattering teeth and scared to get in fully. Summoning up all my strength and encouraged by people around me, I crouched and pushed myself forwards into the water, submerging myself and swimming forwards. Like Dorothy putting on the ruby slippers, I remembered there’s no place like home...... and my home is in the sea. I moved forwards, before turning into my back and floating, being carried along by the waves. It’s cold but I can feel every ache and pain floating away, along with any worries and stresses. 

I don’t stay in too long but it’s enough to leave me feeling amazing. My shoulders and knees, that have been agony for months, are pain free. Mentally I feel blissed out and floaty. I am grinning from ear to ear.  Hubby helps me get changed and we enjoy breakfast baps and cups of hot tea. 

Then it’s home and I stand in a hot shower until I can barely see due to the amount of steam. I get out and dry off quickly, trying to hold onto the warmth of the shower. Without any sense of guilt or feeling lazy, I pull on my comfiest pyjamas, fleecy dressing gown and fluffy socks. 

Now I’m settled on the sofa with more tea. Relaxed, pain free and happy. Hubby dozes beside me and the dog is chilling in her bed....... 

The whole house is content. Perfect Sunday :) 

Living with xx

Sunshine and stability

Oncology review day rolled around again..... As ever, I woke up with a mix of relief at the thought of getting another one over with, combined with nerves....just because. 

It was a long drive down but we arrived early which is always better....... nothing worse than starting off any more stressed. 

When we got there we saw an older couple in the corridor, clearly not too sure where they needed to go.  We stopped to ask them if they needed help. Turned out they were going to the same clinic as us but their appointment was earlier. We started to direct them but decided it was easier just to walk them up there. The RVH is confusing for anyone. A higgeldy piggeldy mix of old and new buildings, joined together with walkways, escalators  and lifts. 

As we guided our new friends, Andrew and Josie, through the warren of corridors, he suddenly stopped walking and leant against a trolley, saying he felt a bit dizzy. My hero of a husband went back to the front doors to get him a wheelchair while I waited with them and told him just to rest and take a moment. He did brilliantly; had the sense to just stop and take a moment, instead of trying to batter on. 

It’s a long walk to Outpatients on the 7th floor of the old building. Plenty of time to stress....... I usually find my anxiety tears start in the miles long car park queue and then bubble up again in the lift.... Thankfully today there was no car park queue (unheard of!) and we were too busy with Andrew and Josie to worry about what was ahead. We delivered them safely and then went for a quick cuppa before my appointment.

In the cafe, hubby spotted a former teacher of his and I recognised his wife as my childhood best friend’s piano teacher when we were kids.   In keeping with the completely over friendly folk we’ve become, we struck up conversation. The connections were made and we laughed at how frequently we’re reminded of how small Northern Ireland is! 

A nice start to the day. Meeting friendly folks and helping people just like we have been helped so many times. Paying it forward....

Thankfully my appt confirmed stability, despite the disasterous scan! Next one in June so I get to enjoy a few months without overthinking the prospect of Infusion Services putting dye into whatever weird and wonderful vein they can find...... *yikes* Plenty of fun times planned between now and then though....Dublin, Belfast, London...... we’ll see them all!

We came home after a bit of retail therapy (when in Rome....) and enjoyed a lovely cup of tea in our back garden. (Yay, Spring at last!!!) Best teabags ever.... Barry’s. I told my friend we’d bought some in Dublin and they made a damned fine cuppa.....In an amazingly thoughtful way she bought me a box for my birthday, along with a lovely seaside mug and some sweets for my desk (because I don’t like her brandy balls or clove rock!)

Plans for Triciafest2 are coming along nicely, we’ve secured some great items for the auction/raffle and the bands are cracking.

Living with...... 

Freckles

Since childhood I’ve had a smattering of freckles across my cheeks and nose. As I kid I hated them....... no amount of calling them ‘angel’s kisses’ could fool me into believing they were cute!! As I got older I just got used to them. I’m Scottish. Like the Irish, we often stereotypically have freckles. It’s in our genes. Also true to my Scottish genes, I have milk bottle white skin in the winter months..... and sometimes in the summer months too, depending on the Northern Irish weather! 

Last weekend we were in Dublin. Although there was a cold breeze and some winter showers, it was very pleasant in the sun. We spent sporadic, short periods, basking in this Spring sunshine; wrapped up against the wind in warm coats, gloves and hats, sitting on sheltered park benches, our faces turned up to the sun, drinking it in. 

On our return home, after a few days I noticed my white winter face was starting to see a few freckles. Probably for the first time ever I realised how healthy they looked. A face that has been touched by the sun. Very far from a tan, but a slight brightening of a previous pallor. Over the past few days others have mentioned what they’ve described as “a brightness” and I’ve enjoyed lots of compliments about how much better I’m looking. How lovely! Spring is springing and I’m ready to embrace it. 

Winter is coming?? No way!! Winter is going and I’m glad to see the back of it!

Living with...... xxx

Good karma

The best things I’ve learned since diagnosis? That there are wonderful people all around. That the horrible ones don’t matter. And that life is for living.

The past week has given me numerous examples of the first and third of these points. On Tuesday I got the train to Belfast for work. On it I had the company of a guy who shared a love of music. He doesn’t get to many gigs now because he has three young children. I told him of our weekend plans to go to Country 2 Country Festival in Dublin. By the time he got off the train he was looking into taking his wife down for tonight’s show, headlined by Chris Stapleton, as a surprise for her birthday! 

On the way home I enjoyed some first class comedy whilst eavesdropping on an older man a few rows in front of me.  Country folk for sure. He was full of stories and I found it impossible not to have a wee giggle..... personally I think his best comedy moment was when he said this; 

“I’ve got three brothers. But we all have different fathers. They talk about your forefathers........ well in my house we actually HAD four fathers......!!!” Classic. He’s wasted on a train, he was better than Mrs Brown’s Boys any day of the week!

On Thursday I met another lovely stranger. I’d been to help my dad with something and was waiting for a taxi home. An older lady was walking up the footpath and a car with trailer pulled up to park. The driver mounted the kerb and almost clipped her, giving her a fright. She stopped to talk to me, giving off about what had happened. I offered to talk to the driver for her and point out what he’d almost done. She declined and apologised, saying she was ‘just crabbit today’ I told her I’d had a fairly challenging morning myself and not to worry about it. I offered her a lift in my taxi but she hadn’t far to go. Then this very sweet lady thanked me for helping improve her day and told me she loved the colours of my woolly hat! Such a short, simple conversation, but yet it lifted both of our days.

Last night we enjoyed our first night at C2C, singing along to ‘Friends in Low Places’ and enjoying the vocal harmonies of the headliner, Lady Antebellum. This morning we had breakfast baps the size of my head and enjoyed a beautiful springtime walk around St Stephens Green. This afternoon I had a hot chocolate in Bewleys that probably met my sugar quota for the month! Now we are chilling in a nice hotel before heading back out for more music. 

#livingwith xx

What a difference a year makes....

This time last year I’d just had my second brain surgery. The awake one. It’s fair to say I’d felt better.......

This year? 

I’m working 4 days a week. I go to gigs. I spend time by the sea.  We even recentry sea swam (ok, ok, I toe dipped..... it was cold!!) with comedian John Bishop.

I’m preparing for this year’s charity gig....

I’m bursting into Spring! I have 2 planned trips to Dublin in the next two months; one for a music festival and one with my sister and brother in law. Then I’ve a trip to London. Now we’re planning a quieter few days away at the end of the summer...... possibly Galway. 

Living with xx

Update, 14/03/2019- 

I’m a numpty. It’s not a year, it’s two!! Time flies!! Xx

Mayor or sofa....?....

I’m on my sofa in my pyjamas. With good reason. I have a stinkin cold. I’ve also had a week of stress due to a family member being unwell. So I’m in self imposed quarantine to give me time to make sure everyone is ok, including myself.......I’ve coughed so much the past few days that I’m totally scunnered. It just won’t stop! 

A short time ago I received a phone call. As I coughed, spluttered and tried to respond, a very pleasant lady told me she was ringing from my local Mayor’s Office to invite me to visit tomorrow afternoon. 

I’d known this call would come at some stage but the date of the event was a surprise because I’d imagine the actual invite is lying in my post tray at work as I sit on my sofa, coughing. 

I tell the story because it’s a great example of how wonderful my friends are. When the Queens Birthday Honours are announced, each Council gets a list of recipients in their area. The address used in my nomination was a Belfast one. For that reason all communications go to Belfast first before being sent on to me. So I didn’t get added to the list for my area. It really made no difference to me and the Belfast Lord Lieutenant who awarded me my medal at Hillsborough Castle was lovely. 

What I was unaware of was that everyone named on the list and living in my area was invited to the local Mayors office for a small event to congratulate them. I was oblivious..... a good friend of mine was not..... She happened to see photos of the event and jumped to defend her friend. She rang the Mayors Office and demanded to know why I hadn’t been invited! Then she rang me, mortified, and apologised profusely for her misunderstanding. She was worried she’d embarrassed me but she hadn’t at all. Once I got past the laughing, I was really touched by her gesture. She saw what she believed to be an injustice against her friend and she took action. I absolutely love her for that! She’s awesome, what a friend!

So thanks to my dear friend I have just been invited to the Mayor’s Office, but thanks to my miserable cold I can’t go. I don’t mind because the important bit of this story is how wonderful my friends are. They never fail to amaze me with their support, love and fierce loyalty. My friends are the best!! Xxx

Blogversary

Tomorrow is my 2 year blogversary. 2 years of writing crap. Hard to believe people ever read it, never mind still read it!! Here’s some 2 year numbers....

• 301 posts
• 71,410 hits
• Most viewed post - ‘I made you a promise’, with 720 hits
• 43% of hits from iPhones (I knew you were all reading in boring meetings!)
• 2 brain surgeries
• 30 radiotherapy sessions
• 2 chemotherapy sessions
• Too many scans to remember
• 4 hospital stays
• 6 months weaning off steroids
• 8 months of sea bathing
• 14 months back at work
• 4 months since I was signed out of palliative care
• 1 medal

Plenty of blogging inspiration! Xx

People and rock and culture

Busy weekend! After a busy week at work. I’m starting to think there are some ne’er-do-wells that having been waiting for me to get back so they can resume their mischief...... ‘let’s have some fun with that Analyst who left for a while......’ So busy, challenging, but keeping me moving. And as my father-in-law likes to tell me “If you’re marching, you’re not fighting.” True.

Yesterday we went to Belfast for a gig. Live music is therapy for me. I love to sing along, have a wee dance and enjoy good times with friends. Music makes me feel good, especially when it’s live.

Last night’s gig had potential to be an odd one.... a band that had split up amid much drama and I knew there’d be some attendees that I really wouldn’t want to see. I felt slightly anxious about it and almost didn’t go but we’d paid for tickets and an Airbnb..... plus I refuse to be intimidated by a few high drama types. I knew there’d be enough true friends there to make it fun and I was right. There were friends from Scotland and friends from all over NI. It was great to catch up and enjoy the band.

We stayed up in Belfast last night. If there’s one thing I love about Airbnb’s it’s the people you meet...... This morning we met a fellow guest. Mike is from England and over as part of his work with the local Buddhist community.  

As far as religions go, I’ve always felt Buddhism to be one of my favourites...... around 12 years ago we were fortunate enough to have a family holiday in Thailand and found the Buddhist people to be gentle and kind. They appear to have a natural peace that I’ve always admired. The past two years I have found myself becoming more involved in calming my mind through what are essentially Buddhist principles; time in nature, receiving and paying forward kindness, reiki, hypnotherapy, meditation..... these things help keep me moving forwards and stop me becoming hyper and spinning off into an unhealthy and anxiety driven buzz of constant activity. They allow me space to regroup and restore my energy stocks. So meeting a Buddhist and hearing more felt very much like karma. I enjoyed talking to him. With my permission (he was very careful not to ‘preach’ or force opinion on me), he taught me a chant; ‘Nam myoho renge kyo’  if my understanding is correct then this is essentially the principle that we each have the ability within us to overcome any difficulty we experience in life. I like that concept. And I believe it. Mike talked about getting back what you give out..... something that has been said to me before. And again, something I believe. 

After this we went to St George’s Market for king sized breakfast baps! For those reading this who aren’t local to NI, this is a Belfast Bap (a massive bread roll, baked so that it’s crusty on the outside and really soft and fresh in the middle...... like the bread version of an armadillo....!!), filled with sausages, bacon and a fried egg. Some people also add mushrooms, onions and sometimes even black pudding. I stick to some tomato ketchup (or ‘red sauce’ as we like to simplify it to over here!)  So, anyway, St George’s and breakfast baps. Plus a cup of tea. Perfect. We met more friends and, as ever, I made some new ones while hubby was off buying the full fry in a roll! One friend showed me a photo she’d just taken of her and Jonathan Ross! Apparently he was in the market but we didn’t see him. Probably fortunate as I’d have chatted the hind leg off him (another NIrish-ism...... just means I talk a lot).  As we got the car from a nearby multi story we heard someone singing ‘Hey Jude’ on the level just below. Unable to resist, we joined in and then shared laughter with these strangers......you get what you give.....

From St. George’s we moved on for a bit of culture and visited the Ulster Museum. I’d seen on the news that they had an exhibition of Leonardo da Vinci sketches and I wanted to see them. Hubby, as ever, went along with my every wish! He got to see the Game of Thrones tapestry...... like our very own Bayeux  Tapestry without the historical accuracy. I’ve never seen an episode so I wandered quickly through this bit and concentrated on da Vinci. I got told off for taking a photo with the flash I hadn’t even realised was on, and dutifully promised not to flash in the museum again..... ;) 

Some photos from the museum. When I picture my brain tumour, I usually see a dark cloud or a picture that someone has scribbled all over. The second photo was like seeing a da Vinci sketch of it.

Great weekend. Lots of work plans this week and then a long weekend to build myself up before lots more exciting trips over the next few months. 

#livingwith

#notmissingathing

Xx

Tears over trainers

Today I cried proper tears....... over two pairs of grotty old trainers.....  Hubby had taken a notion to tidy and clear out the front bedroom. You know the one. The third bedroom in a house with only one child. The bedroom that’s too small for a double bed. In the house with no garage. The storeroom. The dumping ground. The mess! 

Fair play to him for getting stuck into it. Though in fairness it’s not my lifetime stock of old work clothes and cables for every electronic item we’ve ever owned! Though I’ll admit some of the crap in that room is mine.... 

“Do you want to keep these?” He asked me, whilst holding up two pairs of stinking, grotty trainers. “Yes. I do” I replied curtly, without turning around, as I stood in the kitchen doing the dishes. “Are you sure? You haven’t worn them in ages”. I sharply responded, “I haven’t worn them for 2 years because I’ve been sick. I couldn’t fit them on my feet because they were so swollen from steroids.” Sensing I wasn’t happy, hubby did the sensible thing and exited stage left, smelly trainers in hand. 

What was wrong with me? Why such a melodramatic reaction? Honestly, I heard something he didn’t say. I heard “May as well throw out the trainers you used to wear to go running. God knows, you’ll never do that again”. That’s not what he said or what he meant but it’s what I heard. Thankfully I realised pretty quickly that’s what I’d done..... And my husband is a star who I often think can read my mind these days.  He gave me a bit of time and then came back in. He approached slowly and carefully, without making eye contact..... I apologised and explained my reaction, being careful to make it clear that I knew I’d responded to something he hadn’t actually said. He totally got it. In fact, he’d already caught onto what had happened before he’d come back into the room.

I kept the smelly old trainers. I’m not stuck in the past, but I’m not ready to chuck them just yet. Truth be told, I didn’t stop running because of my brain tumour. I stopped running because I was crap at it!  Maybe I’ll wear them to walk the dog. Maybe I’ll do the odd fun run in the future. Maybe I’ll dump them another day when I’m in a better mood. Whatever, it doesn’t matter. No rush.

More importantly, I got a letter last week. Seems my disastrous ‘no veins for the dye’ scan was good enough and there’s stability. This is far more important than stinking old trainers!! xxx

Planes, trains and brains

So I’ve been cleared for take off by both oncology and neurology. This is important news because I got my garden party date for Buckingham Palace and I didn’t fancy trying to get there by boat and train or hubby having to drive. I may ask the pilot to do a Top Gun style fly past the tower at Gatwick when we arrive to celebrate haha!

I am currently sitting on the train home from Belfast after another venture out into the wider work world. Confidence is building so I’ll need to keep myself reigned in and not get too carried away!

On Saturday morning I spent 3.5 hours with my sister at a qigong workshop. I’d describe it as what I’d imagine tai chi to be like, but with added meditation. I thoroughly enjoyed it and left it with a notable reduction in muscle pains. I’m starting weekly classes tomorrow evening and am hoping for great things. Not content to just enjoy the class without being disruptive, I took the giggles during it. There’s a move we were taught that’s called ‘bear walk’ though our teacher told us some call it ‘penguin walk’ because you look a bit like a penguin when doing it. I got an imagine in my head of the soldiers in Toy Story and had to resist the urge to shout in a bad American accent “We’ve got a board game people. A board game!” 

These are the things that now entertain me. How painfully dull I’ve become..... Although I was at a rock gig on Saturday so there’s still a smattering of cool in there somewhere I guess.  The night out was partially in celebration of my 2 year seizureversary. Amazing to think it’s been that long. Unbelievably, in a club filled with over 100 people, a girl I’d never met before chose to sit beside me and we got chatting. We introduced ourselves to each other and shared a few laughs. She had a very trendy haircut; it was shaved really short at one side and longer at the other, with the longer bit dyed purple. At one point she went to the toilet and on her return I saw a familiar shaped scar on the shaved side of her head. We chatted again and eventually I gently asked her about her scar. She said “yeah, I had a brain tumour!” Of all the seats, in all the venues, we end up sitting beside each other...... yet more mad serendipity! We shared a love of live music and a love of life. Cool :) 

Broken veins and sleep poetry

It was a busy week. Between train journeys and work stuff, I also organised our trip to London for a royal garden party as part of my BEM award, plus I set the ball in motion for another charity gig this year.

All fun and good times, plus a long weekend off to look forward to. Off on Friday and tomorrow. What could possibly go wrong??

My veins. That’s what could go wrong. And they did. On Friday we went to Belfast for me to have a scan. These scans are MRI and involve dye being put into a vein. My veins have been poked and prodded for 2 years. They weren’t happy at the start but have become progressively worse. Gone digging...... and digging...... and digging some more. Not even a doctor with an ultrasound machine could get a needle into a vein. In the end they had to give up. Not their fault but hugely frustrating for me. Not to mention sore. I’m like a pin cushion although I’ve had worse bruises at other times. The rest of the scan was done so I’m hoping it’s enough for them to see what they need (and that it’s more improvement!) Unfortunately there’s a chance I’ll get called back and someone from Infusion Services will have to get involved. 

I’m persuading myself it doesn’t matter. That I’d know if things had got worse. I’m trying to have faith in my body’s ability to keep healing. 

There’s little doubt it caused me a wee dip though. It wasn’t a nice experience. Although the doctor and nurses were brilliant, I’m embarrassed to say there were tears and I left in a foul mood and totally fed up.

We went to walk in my friend’s beautiful garden on the way home and the next day we went for a quick beach walk in Castlerock. I went to bed early on both Friday night and Saturday night. 

Last night I woke up with a start as hubby was coming into bed. “I wrote a poem!” I exclaimed. “I wrote a poem in my sleep! Quick, get me a pen and a bit of paper. I have to write it down before I forget.” This is what I wrote;

Granda used to wear his old boots every day

He’d wear them for sowing

He’d wear them for hoeing

He’d wear them planting

He’d wear them for picking

But one day they just stood on the step

Gathering dirt in the wind and the wet

“Why does Granda not wear his old boots anymore?” asked Tom

He knew in his heart that something was wrong

Granny wiped a tear from her eye

“He doesn’t need his old boots anymore.

Where he has gone, granda can fly.”

I originally called it ‘Why Does Granda not Wear his old Boots Anymore’, but hubby suggested that was a bit wordy so I’ve gone with just ‘Granda’s Boots’. I told my sister and also a friend about it. How tragic is that?, I asked. Not only am I writing poetry in my sleep, but it’s horribly melancholy poetry. Where has that come from?? I cried when I read it to hubby, but then we laughed as we competed against each other in a limerick battle! Thank goodness for my husband. He’s the one who dries my tears, even when they make no sense. 

Today we didn’t sea bathe as it was too windy and choppy. We went down and got sea air though and it was just what I needed.

Then we came home and binged on rubbish films....... Cocktail followed by Footloose. I treated hubby to a bit of a flash moblet (it can’t be a full flash mob if there’s only one of you!) but I mistimed it slightly...... Picture the scene...... I thought it was close to the big end dance scene so I subtly got up to let the dog out. I waited, stretching my aching muscles and hiding my true plans...... unfortunately it was bit further away from the scene than I remembered. Hubby glanced at me every so often, before telling me he knew exactly what I was planning and that I was way too early! Doh!! 

Another day off tomorrow. I’ll have a wee sing and a dance when I get up. I’ll sing loudly in the shower. Then I think I’ll go to the sea with hubby again. Breathe in the air. Remind myself I’m still doing ok. Xxx