What a lovely day!

Unlike Bill Withers, I didn’t know today was going to be a lovely day. 

On the surface my plans seemed fairly straight forward. I had a training course for work this morning and was then meeting friends for lunch, former colleagues from the time when my cancer struck. I was a little nervous about the training because I had been asked to have a quick meeting beforehand and I was a little concerned about what was going to be discussed. My anxiety levels weren’t helped by the fact that the weather (pouring rain) considerably slowed my journey time meaning I arrived half an hour late.

Turns out the meeting was positive and a matter that had been causing me some angst was resolved. 

Training was grand and finished up early. Happy days, except I had an hour and a half before I met my friends for lunch at a cafe 10 mins away! I decided to head on over, park up and ring hubby for a chat.

As it turned out, I was leaving the building and bumped into a girl I don’t know, but recognised. She said hello and gave me a very friendly smile. I said hello back and commented that every time I was in that particular building I always saw her! She laughed and agreed that she recognised me too. She introduced herself and I did the same. She said she recognised my name and we ended up chatting. She was really lovely and we ended up having a long chat, like old friends. 

By the time I left her and got to the cafe I was only slightly early. I ran through the rain and entered the cafe, soaked. There was a man just inside the door. I told him I was meeting two friends but I didn’t see them there yet and could I just sit anywhere? He started to smile and I took a closer look at him, before laughing and saying “You don’t work here, do you??”. “I don’t love, I’m just waiting for coffee to take away!! But sure sit wherever you like!!” One of the actual staff came over, also laughing and pointed me in the direction of some free tables. Doh!! 

My friends arrived and we ate our lunch whilst enjoying a good old catch up. I was working with them when I was first diagnosed so it was lovely to be able to share old memories of a work period that I refer to as ‘my halcyon years’.  I loved the job I’d been doing then, but I’m fortunate to also love the job I was doing before and went back to after I returned to work following my treatment.

After our fun and heartwarming get together one of them insisted on paying. He returned with two men and a woman I thought I recognised but couldn’t place. She immediately greeted me with a huge smile and seemed genuinely pleased to see me. 

She realised I didn’t recognise her and told me who she was……another former colleague who I was very fond of. She’d been through a challenging time, split up with a not very nice husband, and emerging glittering! I couldn’t believe it was her. She looks wonderful and her heart is as warm as it always was. We ended up getting another cuppa each and shared a bun while we laughed about the good old days when we’d worked together. 

She told me how she’d loved reading this blog and praised my positivity. I confessed to her that writing is a way for me to get my head around things and that my golden rules were to always be honest, but also always end blog posts on a positive note.

We sat for hours and she did my heart so much good. I promised her I would write a post about our serendipitous meeting, so here it is. I won’t name her, but you know who you are you wonderful, wonderful lady!! 

A planned get together with two great friends, followed by an unplanned get together with another great friend. Sometimes when I’m finishing a blog post, I have to think hard in a Pooh bear kind of way, searching for the positive. Not today. My heart is full. 

I didn’t know today was going to be a lovely day, but by golly it was!! 

“Lovely day, lovely day, lovely day, love-ly day!!” 

A change in pace

After 6 years and 5 fundraisers (one year missed because of Covid), we have now completed all the necessary tasks to allow us to say our annual gig and raffle in aid of Macmillan Cancer Support in NI is all wrapped up……. And what a gift it has been. Five fantastic nights, featuring music from the best in local rock bands, amazing raffle prizes. We’ve made new friends, seen the dream of The Riverbank Relatives Room become a reality in our local hospital, and raised an amazing 

£28,314 

for an important charity offering support to local cancer patients and their families.

My heart is full of love and pride for everyone involved. There is, of course, a degree of guilt that we’re stopping our fundraising, but it is small in comparison to the sense of relief. It’s hard work and takes a lot of pride swallowing to approach musicians, business owners, family, friends and colleagues, asking for support. Inevitably it was the same people that supported us year upon year.

So now it’s done. We can hold our heads up high whilst simultaneously resting back on our laurels a bit! 

We already have plenty of adventures planned for 2024, but are slowing things down a wee bit. Almost permanent tinnitus is making loud gigs in small venues a bit more challenging for me. Not to mention the exhaustion and aches and pains I often feel after a late night……..especially when I get carried away and start making shapes on the dance floor!! Singing and dancing is a wonderful tonic, but care should be taken to avoid burnout!

I have been promised a face-to-face appointment after my next scan, due in the Spring/Summer. The Health Service is so under resourced, the waiting lists are unbelievable. I don’t want to increase the burden, but I obviously have questions about my condition and prognosis.

Come January we’ll be celebrating my seven year seizureversary. The rollercoaster ride remains somewhat turbulent, with wonderful highs and sometimes deep lows. I remain well supported, albeit by a much reduced number of people. I remember being cross with my dear dad when he told me “A lot of those you think are your friends, will disappear. People forget.” I thought he was being negative. Over the AD* years I’ve learnt he was being realistic and honest. Fortunately, the ones who’ve moved on to their next ‘project’ are not really missed because my life is too full of unbelievably supportive family and true friends. 

Life remains good. Hubby and I work hard, which can be frustrating at times. Some days I’m fighting the urge to throw my head up, but the fact is that work pays the bills and funds the fun times! We’ve also learnt to prioritise a bit better.In January we will celebrate our 27th wedding anniversary and we couldn’t be happier.

Luckiest unlucky girl in the world 💚💚

*AD: after diagnosis, BC: before cancer

Final fundraiser & status update

“This is the end. My only friend. The end.” The Doors

All good things must come to an end. Our fundraising is no different. In 2018 we were approached by a wonderful guy. He’s a teacher, who taught our son, and also plays bass in a rock covers band. He offered to play a free gig to help us raise money for the charity of our choice. And so it began………… we approached a friend who runs a small venue and he offered his club free of charge. He also suggested inviting other bands to play and then set about getting some signed posters and other prizes for a raffle. We spoke to some musician friends and secured a cracking five band line up. We also approached musicians and local businesses for raffle prizes and were blown away by the response. It will come as no surprise to anyone who knows us that we chose Macmillan Cancer Support as our charity. 

My wonderful sister and brother in law who have been a firm support since my diagnosis got involved by asking for donations in lieu of wedding presents……how awesome is that?? That first year we raised £8,748, every penny of which was donated to Macmillan in NI and some of which the charity allowed us to use to create the Riverbank Relatives Room in Causeway Hospital. This room is something we remain hugely proud of, and we have never stopped being grateful to the people who made it happen…. there are small ‘tips of the hat’ to them in the room.

The first gig went so well, we were persuaded to do it again…..and again…..and again…….and again!! Five gigs in six years, with just one year missed due to the covid pandemic……overall total raised for Macmillan in NI??

         ^£26,550!! 

Not bad going.  Whilst we will always be proud of our fundraising, we’ll never underestimate the size and diversity of the team that made it happen…….To quote rock band, Black Stone Cherry (who I’m led to believe were quoting an African proverb……at least in the first section of this quote!!) ”It takes a village to raise a child, it takes an army to walk a mile.”

Personally I think our team have walked significantly more than a mile, and probably even more than Craig and Charlie Reid!

To an outsider looking in, we organised a ‘thing’ and raised money. Inside was very different…..I often felt like Oliver, begging bowl constantly out, looking for bands, prizes, cash, raffle tickets, t-shirt and gig ticket buyers. In reality the work involved lasted most of the year, and we were both working at the same time. So this year we decided we’d done enough. We need head space. We still donate to Macmillan and a number of other cancer charities on a monthly basis, but the gig is done. I’d be lying if I said the end hasn’t brought a huge sense of relief. We’ve done our bit but now it’s time for us to think about us. 

That’s turned into a much longer post than I had anticipated!! Quick update on everything else……

Health wise I remain on a bit of a rollercoaster, but the peaks and troughs don’t seem quite so insurmountable. Anxiety remains the biggest challenge, but I guess that’s to be expected.  I am also a human barometer, a slave to the weather. According to my 6-monthly scans, my tumour remains on its best behaviour and I do everything within my power to keep it happy and avoid facing its wrath. Relationships wise, our circle is tighter but filled with genuine friendships. The drama lovers have mostly removed themselves. 

In general, life is good. We both move a bit slower, but we rarely take each other, or the happy life we get to live, for granted.

Life is different, there is a shadow that we can’t escape. Sometimes it seems very long and covers much of our day, but more often it passes over like a cloud.

Dolphin drunk

I have a dear friend who I’ve been pals with for many years. We first met when we were teenagers and our friendship has lasted for over 30 years. In the early days it was forged in music and a mutual friend, but over time we grew closer as we realised we had so much more in common…….. We are both wives, fortunate enough to be in long and committed marriages. We are both mothers who share deep and unconditional love for our children. We are both lovers of the outdoors, especially being near, or in, the sea. We meet for a sea dip as often as we can, usually at least once a week, and stay in touch in between times. She’s my sea sista.

This year she hit a big birthday. It’s not every year you turn 50. I decided to get her a gift I’ve got her in the past, and one that we both enjoy. A birthday boat trip with sea dip.

We sea dip every week, but from beaches or rocks. Sea dipping from a boat is very different. You’re not wading in at your own speed. You’re not staying within your depth. You’re not bathing or playing in the waves. You’re getting into a seemingly bottomless sea, fast, and you’re properly swimming from the get go!

Today’s birthday boat trip followed the northern coastline of Northern Ireland, past some of the most beautiful places you will ever see from a sea! The sometimes wild North Atlantic Ocean was calm and, whilst the sky was grey, we brought our own sunshine and enjoyed the views and the wind in our hair.

It wasn’t long before the skipper pointed out bottle nosed dolphins nearby, and before we knew it the boat was surrounded by them. They were so close as they played in the boat’s wake. What a wonderful sight……..but it was about to get better!! Slowing the boat down, the skipper asked the small group of passengers if any of us wanted to get in and swim. My friend and I, along with three other ladies, excitedly raised our hands. The boat stopped but the dolphins continued to play around it. 

We got in.

We got into the North Atlantic Ocean as dolphins swam under us and leapt in the air beside us. 

Read that again, I know I have to. We swam in the Atlantic Ocean with dolphins. Completely unbothered by us, they were close enough to touch. 

None of us could quite believe it. My friend and I looked at each other, wide eyed, and through squeals of excitement and laughter, both began to cry. It was all so surreal and overwhelming. An experience neither of us will ever forget. 

I have absolutely no idea how long we were in the water. I have no idea what was going on around me in the boat on our journey back to the harbour. I remember talking to a lady who was having as much difficulty as I was trying to get dried off and dressed, and I remember shared glances, smiles and tears of joy with my pal. 

Back on dry land, my friend and I got soaked in a downpour that had started just before our boat docked. We didn’t care. We laughed and cried our way over to a local hotel for lunch, where we giggled like teenagers and declared our undying love for each other. Dolphin drunk. “I f’in love you. Do you know how much I love you? I’m serious. You’re awesome. That was the most wonderful experience ever. You’re the best. No, you’re the best. Seriously, I love you” 

I haven’t touched a drop of alcohol since my initial grand mal seizure over 6 years ago, but I’m sure anyone who saw us today laughing and crying like overexcited children on Christmas Eve, would find that hard to believe!

I could never truly do justice to my experience today. No words could ever fully express my emotions. Yet again I find myself completely overwhelmed by love and joy. What a wonderful life.

Living with xx

Lucky knickers

Every six months I go to The Cancer Centre for an MRI scan. It’s to check if my grade 3 brain tumour is behaving or  has decided to live up to its diagnosis of being ‘incurable and terminal.’ Thankfully it hasn’t shown any interest in finishing me off in the last 6 years, but that initial diagnosis will always hangs as a shadow. The scans, whilst never fun, provide important reassurance that everything remains ‘very quiet and very stable.’

In order to gain a full and in depth picture, my MRIs are performed using a dye that gets injected into my veins. Gladolinium contrast dye is used to improve the quality of the images captured. Side effects are rarely serious…..I’m usually just left feeling very tired and a bit headachy, but that could happen to me on any day anyway, never mind when you add in a bit of scanxiety. 

The biggest problem with the dye for me has been my veins. They frequently go into hiding and refuse to allow even the most skilled medical staff to insert a cannula. I’ve had many scans performed without the dye, because a suitable vein couldn’t be found. 

In my experience the nurses in Radiology are excellent, but it’s not unusual for them to be outfoxed by my troublesome veins. This adds to my scanxiety. Despite being told that MRI without the dye is enough to show there has been no changes in my tumour, the scan results always fall a little short for me. Results don’t come out for 3+ weeks, so it can be a big buildup to feeling somewhat flat when I open the letter. It’s always a huge relief to get good news, but I  inevitably harbour a nagging doubt that something could’ve been missed.

From day one of my cancer diagnosis I have felt it important to try and help myself as much as I can. I learned some relaxation tips, improved my diet, and started my life changing sea dipping habit. Pre-MRI rituals are essential for me. I need to know I’m doing as much as I can to help get those veins popping! Any medical professional will tell you the best way to entice your veins out to play are to keep your weight at a sensible level, drink plenty of water and keep warm. Despite some menopause middle-age spread, I’ve managed to keep myself within a healthy BMI range through improving my diet, light exercise (granted, not as much as I should!) and cutting out alcohol. 

In the build up to a scan, I drink even more water than usual, and often travel the 50-odd miles to the hospital wrapped in layers of warm clothing, a blanket and nursing a hot water bottle. 

I’ll admit to some less scientific rituals as well. I have ‘lucky knickers’ that I always wear on scan days. They sport a rather fetching tartan pattern and were a gift from my big sister early on in my journey. It astounds me that they have always fitted, no matter my ever changing weight! Lucky and magic underpants. Today I bolstered their superpowers by wearing a lucky t-shirt. Given to me by my wonderful husband just yesterday, it shows a drawing of the singer Dougie MacLean and some of the words of his famous song Caledonia. As a Glaswegian I hold a special fondness for this song. A local legendary musician once dedicated it to me when he was playing a gig at a rock club we regularly attend. Afterwards I asked him how he knew I was Scottish, and he told me he hadn’t known but he thought it was a nice song to dedicate to me! It was also one of the songs I chose for my dad’s funeral…..alongside Flower of Scotland and Abide with Me. 

Winter scan days, in spite of the layers, frequently result in vain attempts at getting a vein. Summer scan days provide more hope. This morning hubby drove me up to the hospital as always. The weather has been beautiful of late and I watched the thermometer in the car tick up and up as we got closer to our destination. By the time we reached the Cancer Centre, I was sweating and was desperate for the loo after drinking so much water. I got out of the car and danced  alongside my rock of a husband, windmilling my arms like an overexcited child (windmilling is another ‘top tip’ I recently read about in relation to encouraging veins!) and feeling optimistic in my Scottish underwear and t-shirt.

As I waited to be called, I proudly showed hubby the veins on my arms, knowledgeably pointing to the ones I felt were ripe for the puncturing! 

Happily, it was the most successful vein finding exercise I’ve ever experienced. The nurse got a juicy one first time and I had my full scan, event free.

I now begin the seemingly impossibly long wait for results, but I’m putting my full faith in my lucky underpants and tee!

Never underestimate the power of belief!! 

To be continued when the letter arrives in a few weeks time……. Maybe I should make sure I’m dressed correctly before I open it?!! 

For now I’ll put today behind me, and go on Living With xx

YOLO

I am on a plane. Don’t worry, I’m in flight mode, so this won’t be published until I’m back on terra firma. I am going to Venice. Italy. I’ve never been to Italy but have always wanted to go.

Hubby and I are staying in Venice from today (Monday) to Friday. We are celebrating our 25th wedding anniversary, a year late. In January of this year we were married 26 years, but we didn’t get a chance to celebrate properly last year because we had too many other things on!! The covid pandemic resulted in a lot of music gigs being rescheduled so last year was a busy one. In fairness this year is possibly worse, but we are completely embracing the YOLO attitude.

You Only Live Once, it’s true, but you can nearly die a few times it seems. You can be given an incurable and terminal cancer diagnosis, you can experience phenytoin toxicity and be days from death, you can find yourself directly in the path of a runaway 4x4. None of us know what’s around the corner. Many people say it, but I’m not sure everyone really feels it in their bones. I do. I believe my husband does too. We know what looking Death in the face feels like and each time I’ve stuck out my tongue, blown a raspberry, stuck two fingers up, grabbed my husband’s hand and run off in the other direction, singing ‘not today, oh no, not today’.

This wee blog of mine has always been focussed on positivity, which is why I can be guilty of making it all sound so easy and stress free. The reality is very different. I’m not a hero. I’m not an inspiration. I’m fortunate and I’m very well supported. Sometimes I lie in bed with my heart pounding, wondering if my brain tumour is coming back, terrified a seizure is imminent. I have been so excited about this trip to Italy that I’ve spent much of the last week catastrophising about everything that could go wrong. Thankfully I can already tick some of this possibilities off the list……

- I didn’t become unwell and neither did anybody else. There were no dramas that made travel impossible.

- We didn’t sleep in. Despite my complete inability to sleep last night. We booked one night plus parking for the time we’re away at an airport hotel. It was nice. Clean. Comfortable. Convenient. 

We had to be up at 04:15 to get our complimentary shuttle bus to the airport in time for our flight. I settled down early. Hubby was watching the James Bond film Octopussy. Plenty of gunfire, shouting and music, but I was comfy enough to doze. When the film ended he turned the TV off. I could hear what sounded like a fan blowing. Annoying, but I assumed it was linked to the bathroom light and would go off after a short time.

Some time later it was still going. It was completely intolerable to me. Like white noise or water torture. I spent some time deciding it was probably some sort of air temperature management unit in the room and I should ignore it and go to sleep. I then spent some more time realising that there was no way I could sleep with it on. Finally I spent yet more time trying to turn it off, with the help of the light from my phone screen. Unsurprisingly, hubby work up, despite my best efforts to be quiet. He didn’t curse at me for being a pain. He didn’t laugh at me when I told him the noise of the air con was driving me mad and that it kept going, even when I turned it off at the wall control. He hugged me when I started to cry and lamented how tired I was, how we needed to get some sleep, and how sore my head was becoming. He reassured me I was right that it was still whooshing despite definitely being turned off, that I wasn’t going mad. 

Eventually it stopped. I’ve no idea what time it was but I suspect it was around 01:30 or so. Thankfully we both slept and I awoke feeling better than expected. 

- We got through check in and boarded our flight at Dublin Airport without any problems……..in fairness it made Belfast International look like a Fisher Price airport. 

Granted, we haven’t landed safely yet, but I’m feeling fairly confident.

- My head hasn’t exploded, despite my buzzing ears and the pain across the bridge of my nose.

We are currently flying over The Alps and I have a few tears in my eyes. We are close to starting our descent and I have survived the longest flight I’ve been on since my diagnosis. What a wonderful adventure I am on, and it’s with the best man in the whole world. We are flying over The Alps! We are going to Venice! We are alive!  

I won’t arrive in Italy looking glamorous and carefree. I will arrive in Italy a bit red eyed, and a little scruffy, wheeling my new bright red child’s suitcase covered in hearts with an image of Mickey and Minnie Mouse kissing emblazoned on the front. I will arrive in Italy looking like me and I’ll be damned happy to be there!

You Only Live Once. You don’t have to be stylish to live life in style!! Do it your way xx

Near miss

Current status: shaken and a bit stirred. I’m sitting with a fresh mint tea, trying to decide if I’m incredibly unlucky or incredibly lucky. I’m going with the latter…….. or at least I will when my heart stops thumping and my head stops throbbing.

Picture the scene. It’s a lovely sunny day. We’re both off work, have sorted out a few messages in town and are now just kind of sitting about. Both in our own wee worlds, both falling down the social media rabbit hole. 

For some unknown reason I decided I’d clean out our car. My heart wasn’t really in it, but I persuaded myself not to be lazy and got stuck in. 

The car was parked in our driveway and I had the vacuum cleaner out as I tried, somewhat in vain, to suck up the muck, small stones and copious amounts of sand from the floor and seats. 

I had all the doors open, Billy Joel blasting, vacuum on, and was working on the drivers side, when I heard a shout closely followed by a slight bump on the car. I thought hubby was trying to get my attention and had banged the roof or shut one of the doors. 

Startled, I jumped up from my bent over position and was faced with the front of a 4x4 touching the open back door of our car, right behind me. A tall man had clearly just jumped out of the vehicle and was holding his chest in what looked like a mix of terror and relief. A neighbour ran across the cul de sac, looking distressed and asking if everyone was ok.

I stood there trying to comprehend what was going on and as I took it all in, it became increasingly apparent that I had narrowly missed being quashed by a 4x4!

The owner had been dropping something off to one of our neighbours when the vehicle began to roll from the neighbour’s drive down the slight slope and into ours. The neighbour saw it happening and ran out, shouting. At this point the man saw what was happening too and raced after the 4x4, managing to jump into it and get it stopped just as it reached our car.

It turned out that while I was cleaning our car and singing along to Billy Joel, I was about to be squished. As my husband eloquently put it; “F*ck me, if he hadn’t got that stopped, you’d have been tatey bread!” He’s not wrong. I was bent half in, half out of the front of our car, which was parked within 30cm of our house at front and left. 

Is it possible that Billy Joel saved my life for a second time?? Had I not had the music blasting, I might have heard the commotion quicker and reacted in a way that would’ve brought about my downfall. I can’t help but wonder if I’d instinctively have put my arms out to futilely try to stop a 4x4……. Who knows? Thankfully not us!

If it had been filmed I’d be on the news tonight and likely be a TikTok legend! I’m very grateful to the man’s quick reaction and feel a bit sorry for him because he was clearly as shaken up as me. 

On the bright side, because there always is one, my Final Destination moment resulted in no injury or vehicle damage. The only evidence it even happened are the thumping hearts of everyone present, the headache I suspect I’ll be nursing all day, and the tyre mark on our lawn.

It seems my title of Luckiest Unlucky Girl in the World remains unchallenged!

Still cheating death.

Never mind living with cancer…….living in this crazy world seems to be quite challenging enough! 

And relax xx

Another orbit

It was my birthday yesterday. Another orbit of the sun achieved. I’m not going to pretend I like the thought of being 48, but I remind myself of how fortunate I am to see it. Once I steady my ‘god, I’m old’ collywobbles, it’s relatively easy to remind myself how incredibly grateful I am to be in my late 40s when my life could so easily have ended in my very early 40s. 

There’s no doubt that cancer and the associated treatments age us. Clearly if I‘d kept completely fit and healthy, I’d still have aged a bit, but I genuinely believe I’ve aged quicker than I would’ve done. 

What I have to keep reminding myself is that it doesn’t matter. My husband is 9 years older than me so that’s worked out well lol 😂 My dearest friends range from slightly younger than me to a good bit older. They’re my dearest friends because of their personalities, not because of their ages. So why would I worry about my own age when I don’t care about anyone else’s?? 

We were at a music gig on Thursday night and in the coming week we have two more on Wednesday and Friday. I’m especially excited about Friday…… on its third reschedule we’re finally getting to see Elton John on his Farewell Tour. Unlike many artists, I think he’ll stick to it and not be like others, who have had more than one farewell tour. Hubby and I saw The Eagles on a farewell tour around 20 years ago……seems hell did freeze over after all…..and not just once!!

So, now that I’m in my 48th year of life and 6th year of life with a cancer diagnosis, where do I find myself? What would be different if I hadn’t developed this hateful disease? Well, I might not have aged as quickly, who knows?? I would undoubtedly still be working 5 days a week, probably far too hard, and not taking all my allowed time off. I’d be taking things far too seriously, trying to move up the ladder. 

It’s when I consider that other reality that I’m reminded of the good fortune my diagnosis has brought me. Clarity. Perspective. Priorities.

Cancer remains frightening. Aging is a bit scary too. But I live a full and fun life with my wonderful husband, sister, wider family and friends. I work, I play, I live another day. What more could I want?

Older? Yes. Wiser? A bit, but not enough to have become boring! Living with…. Xx

Battling

After 6 years, with the help of my support team (hubby, sister and close friends), I remain upright…… result!! I’m still working 4 days a week and sea dipping on a Sunday. I’m not long home from this week’s dip, a chilly but sunny day, Spring is on its way!! 

We’re preparing for our final gig in aid of Macmillan Cancer Support. After five years, £22,000 raised (I’m confident we’ll reach £25,000 this year), our Riverbank Relatives Room finally officially opened, it feels like the right time to finish on a high note.

Organising an annual fundraiser is wonderful because you know you’re making a difference in your own wee way, but it’s also absolutely exhausting. Every year I feel like Oliver, with my begging bowl out…….please will you play our gig? please will you donate a prize for our raffle? Inevitably it’s the same people that get involved. If I had a pound for every ‘pat on the back’ we receive, virtual or face-to-face, we’d have raised ten times as much as we have done! 

This year’s event is at the end of September and already we have our musicians confirmed, and some crackin raffle prizes in hand or promised. We will end on a high and bow out gracefully in order to give us some ‘down time’. 

Some people have already asked if we’ll do it again in future. The honest response is that we don’t know. Maybe we’ll be like The Eagles and go on hiatus, maybe we’ll be like Ross and Rachel and go on a break. Maybe we’ll be like James Bond and never say never, maybe we’ll be like Michael Myers and just keep coming back…… we can’t say because we just don’t know. 

What we do know is that we will forever be amazed and grateful to the wonderful people in our lives who have selflessly supported us over the years…….not just with the fundraising, but with helping us deal with something so overwhelming and life changing. The ones that have stuck have stuck fast…..like a blister plaster….. and we love them for it. 

My name might be attached to our fundraising, but it’s a huge team and they’re splendiforous!! 

As we step ever closer to Spring, I promise we’ll keep fighting the battles in a bid to win the war once and for all. 

Living with xx

The year that was & the year that will be

I may have previously blogged about my dislike of January. It’s just so dark and everybody seems gloomy. The weather is rubbish and the grey skies leave me feeling tired and heavy headed. 

In a bid to banish the January blues, I like to remind myself of all the good things that have happened in the year just passed, and the things I have to look forward to in the year just started.

2022 held plenty of joyous moments. There were gigs galore, sea dips, time with family and friends, laughter and dancing. Highlights for me included:

Top Gigs

So many fantastic gigs after the covid drought. It’s hard to pick my favourites, but here goes……..

• Hothouse Flowers. What a showman that Liam boy is!!
• Counting Crows. Bucket list gig for me, one of my favourite bands. They definitely didn’t disappoint.
• Crowded House. Another bucket list one and, even better, we got to enjoy it with my sister and brother in law. A rare occasion when our musical tastes merged lol
• Our annual charity gig of course. Another corker. We’re now up to a mighty £22,000 raised for Macmillan Cancer Support in NI!

Top trips

• Two trips to visit our son in The Hague. The first in the warmth of April, the second in cold but glittery December. To be fair we wouldn’t have cared about the location, it’s just always special to see the light of our lives! Having said that, The Hague is a fantastic city and a pleasure to visit which is just an added bonus.
• A weekend in Barcelona in the September heat. A beautiful city we’ve visited a few times before, somehow this trip was made all the more special by the relaxed approach……we’d seen everything before so we got to choose where we’d like to go back to and take our time exploring.

Top dips

• My birthday dip in March. It was a sunny Friday, I had taken the day off work only to find hubby couldn’t get the day off and my regular sea dipping team weren’t available. I got in touch with another friend who I’d met when I was in the same hospital ward as her mother. She was going in with a few friends and welcomed me along. When I got there they had a birthday banner and a birthday tea cake for me, and we had a wonderful dip in perfect conditions. On leaving the water I decided to have a cup of tea in the seaside cafe. I wasn’t bothered about being on my own but it turned out I wasn’t! I bumped into a lovely couple I know from work who were there with another couple. Again, I was welcomed into their company. We sat in the sun, chatting, and I had a wonderful time!
• Kinsale, County Cork. Hubby and I had planned a trip only to discover my best sea sista had planned to go around the same time. We were staying at opposite sides of the county, but met in between to dip in the very pretty Kinsale. Yet another beautiful serendipity.

Other top moments

• Finally getting to officially open our Riverbank Relatives Room in our local hospital. It was a long journey but the room is beautiful, provides an invaluable haven for patients and their families, and is a heartwarming reminder of the generosity of some of the wonderful people I have in my life.
• Dedicating a bench to my dad and a dear friend of his at their beloved Rugby club. Two aul boys holding whisky glasses, forever remembered sitting in pride of place in front of the clubhouse, watching the match. “When will we see yer likes again?”
• The addition of a baby grand to the household. Not only does it give me joy just to look at it…..it reminds me of my dad and of how far I’ve come with relearning how the play, and it’s just so pretty……. It’s also helping me improve my memory. It’s such a pleasure when the notes come out right (!) that it makes practicing fun and that has improved my focus, concentration and memory dramatically. Multiple wins!!

With so much crammed into 2022, how will 2023 ever compare?? Fear not, it has already started joyously with a cuppa with two school friends. It’s wonderful how 30 years later we can sit down together and share stories and laughs like we’re still teenagers! These are the friends that are always there…… we share memories, history, and life changing times both good and not so good. We will always have each other, no matter how many years pass, and that’s an incredibly special thing.

What else is to come? More of the same really….. gigs, trips, dips, good times. 2023 marks my 26 year wedding anniversary with my wonderful husband and best friend still firmly by my side, keeping me steady. We have plenty more adventures planned!

I’ll sign off with my most recent scan results..”….continues to remain stable….” More than happy with that! Research tells us that 80% of people with my diagnosis don’t survive to 5 years. At the risk of skudding myself, I’m dancing my way into year 6!

Take that January, your gloomy greyness ain’t getting me down!! 

Living with xx