Slow down!

“Slow down, you move too fast. Gotta make the morning last, yeah” Simon & Garfunkel

How many times have I said it?? When will I ever learn?? In truth, we have slowed down considerably. Mostly. It’s just that every so often life gets busy again.

June was one of those times. Music gigs are sometimes a bit like weddings……there are ‘seasons’ when they all come at once. The bigger ones tend to have the tickets on sale well in  advance, so it’s easy to get carried away and overcommit. It’s also very easy to forget you’re supposed to be slowing down, and think you can keep running.

Since my diagnosis I have become what I like to describe as ‘full of YOLOery’! I’m grabbing life and enjoying it…..as is only right and proper when you’ve been reminded your days on this Earth are numbered. Sometimes I’m guilty of YOLOing a wee bit too much. June seems to have been an example of this, with gigs and trips galore…… Each one was superb and I had an absolute ball….

- Eagles and The Doobie Brothers in Manchester. Outstanding. Vocal harmonies that brought tears to my eyes.

- Crowded House at Blenheim Palace. What a band, what a venue. Far too posh for us really, but we ran with it. We opted not to pre-order a Fortnum & Mason picnic hamper because we felt the price tag was a bit high, and we’re not Prosecco or champagne drinkers!! The gig was outdoor but fully seated and very wonderful indeed. Crowded House are one of our very favourites, you might think you don’t their music but I can assure you that you do! Look them up on YouTube and relive your younger years with a smile on your face……a few starters, “Weather With You”, “It’s Only Natural”, “Fall At Your Feet”, “Distant Sun”……I can almost hear the penny dropping in your head as you say to yourself “Oh yes, I loved that one”

- Sting and Blondie in Belfast. Well it would’ve been rude not to! Another cracker gig but no seats this time. Oh well, nothing else for it than to dance, dance, dance!

- Pearl Jam in Manchester. A bucket list one, though perhaps somewhat controversially, not my favourite. Eddie Vedder, by his own admission, wasn’t well. I think that showed, they cancelled the next few planned shows. They played a bit too much off the new album which I haven’t really immersed myself in. I guess I can’t blame them for that, but as Sting quoted at his gig “I once asked Elton John when I should play a new song and he told me never! The crowd want to hear the classics, they’re not there for the new stuff!” That might be slightly misquoted and apologies to Sting and Elton if I got the wrong people, but someone we’d seen recently before Pearl Jam said something like that, and it’s true. I was excited about Pearl Jam because I wanted to hear the classics. In fairness, I did have a tear in my eye when they did ‘Elderly Woman at a Counter in a Small Town Store” Beautiful. 

So that was our social life in June. Busy and plenty of travel, which I don’t do well at the best of times. Of course, our lives aren’t just about music and fun. The fun times have to be funded. We both work. Hard. I work 4 days a week but on those days I do 07:30 to 16:30, so am not a kick in the arse off full time hours. 

I’m fortunate after 22 years to still enjoy my job. I found my calling and loved the challenge of it and went back as soon as my treatment was over way back seven years ago. Unfortunately it involves a lot of meetings. Meetings that I have to prepare for, with both written documents and verbal updates. I actually don’t mind meetings, especially when they’re face to face, but the prep can be something of a hidden effort….. it might not tick a ‘returns’ box but it takes up plenty of hours. Even more unfortunately, June seems to be a busy season for my work calendar. All of a sudden everything seemed to come in at once, with meetings and requests, and just ‘stuff’ needing done. I found myself spinning plates. Partially my own fault for taking far too much time off to get involved in YOLOery!! 

I found myself getting a bit anxious about work when I was off, knowing what I was going back into. I thought I was on top of it…. I’d scheduled out my work plan, what I’d do on different days etc. I didn’t account for how long it would take to trawl through all the emails I missed when I was off. Each time I returned there were literally hundreds, and they always seemed to include another scheduled meeting! Or a postponed meeting, meaning I’d wasted precious time preparing for something that wasn’t going ahead. Frustrating but again, it’s not really anyone else’s fault that I only work four days a week and was off loads in June. 

Anyway, I was getting through things rightly. When I was in the office I was ‘head down, arse up’, work work work. We were reaching the end of the month and things were set to calm down a bit for a while. No gigs and no trips for a while. Just one report to finish. It was a big one and I was on a tight deadline, but I was nearly there. As I sat in work last Wednesday, I felt confident I’d get it sent off the next day. 

Then something happened. As I sat at my desk typing away, my left arm seemed to be getting numb. I stopped to flex the muscles and it fell like a dead weight to my side. My hand started tingling and I felt like I had pins and needles in my fingers. Terrified I might have a seizure, I tried to phone hubby. He was in a training course so had his phone on silent. I rang my Oncologist’s PS and asked her if I could speak to him. She told me I should go to A&E. 

Panicking, I half walked, half stumbled to the nearest office with an open door and to my further alarm said in a very slurred voice “Can you help me?” Thankfully one of the guys in the office immediately jumped up, came to my side, and led me to a chair. He sat me down, whilst reassuring me that he’d get me to A&E. Thanks to him, I was in A&E within 15 minutes, and was taken straight away.

Things moved very quickly. I was assessed and, as in my initial high drama entry into the hospital world over seven years ago, was diagnosed as having probably had a stroke. My protestations were ignored. Probably rightly so…I might think I’m something of an expert, but realistically how would I know if I’d had a stroke or not?? 

I was kept in hospital for observation and to allow further tests to be conducted. The right thing and I was fortunate to have such superb support, but also terrifying. I was of course convinced this was no stroke, surely it had to be my old friend back to talk to me again (another Simon & Garfunkel quote, kind of!) 

It wasn’t long before the overthinking took over, and the tears started. Hubby was up the road and at my bedside as soon as he was able to see the messages on his phone. Yet again, my poor big man having to deal with the drama of a sick wife. We both agreed it was far more likely to be exhaustion from doing too much, combined with a bit of work related stress, and it turned out we were right…

After two nights in hospital, scans and observations, I was deemed fit to go home, safe in the knowledge that I didn’t have a stroke. Initial observations are that there’s no change in the tumour either, and although that is yet to be officially confirmed, I’m cautiously optimistic.

A definite case of doing too muchery. Doh. Another week off work to recover. Another embarrassment. It’s not my fault I’m unwell, but it is my fault when I forget myself and try to act like a young thing!! 

My list of things to do this week is short:

- Rest up

- Get some thank you cards

- Reassess your life

- Wise up

So far I’ve done plenty of resting up, and hubby and I have spent many hours reassessing our life. Our conclusion was one we’d already reached prior to the latest drama…… slow it down. Do like Eagles taught us and ‘take it easy’. It remains somewhat unfair that we had already agreed this and would’ve stuck to it, yet my body thought it necessary to give us a good old kicking as a reminder. Seriously like?? We’ve no plans now until September and even that’s a slow and relaxing trip to the homeland to relax with family and friends, and spend time on the beach in Fife. Yes there’s one gig too, but it’s a gentle one, surrounded by downtime.

As a (not so) wise man once said “Not giving up living to live” (Nasa Assassin). I will, however, slow the flock down!! I promise. I’ve already started. I’m like a tortoise here ffs! Yesterday I didn’t even have a sea dip, opting for just getting my feet wet instead. 

Trust me. I’m a tortoise. Watch me move slow. Watch me win the race. 

Living with xx

Why you should always…….

Talk to strangers, especially older people

•  Maybe they haven’t spoken to anyone all day. I can’t count how many times I’ve spoken to an older person at the supermarket and they’ve told me that……I was the first person they’d spoken to all day. 
• They might have stories to tell. Yesterday my husband spoke to an older gentleman who told the story of his life….. from his near drowning in a burn at four years of age, through to being in hospital for six months after being hit by a car. Last weekend I met a lady in an airport whose brother had murdered his wife and their two young children before taking his own life. She talked of the difficulty of coping with her grief whilst in the midst of a police investigation and knowing the whole town was talking about her and her family.

Smile

• It shows you’re approachable, thereby helping with the previous points.
• As Spike Milligan taught us, it’s contagious and makes others smile.
• It’ll make you feel happier, even if you hadn’t been feeling that way before you started smiling.
• It makes you prettier.

Fight for your rights

Whether it be your right to party, like The Beastie Boys taught us, or your right to something a bit more serious. And by ‘fight’, I don’t mean in a ‘put ‘em up’ kind of way, I just mean be able to live your life in an inoffensive manner whilst remaining true to your own principles. So fight/ defend your right/ don’t feel the need to keep apologising. Be comfortable in yourself and defend you rights…..

• Your right to grieve your way. It doesn’t have to follow a set pattern. See the Kubler-Ross Cycle of Grief for more.
• Your right to have an opinion. Provided it’s not small minded, judgemental or offensive.
• Your right to say no. Never feel apologetic for not wanting to do something. As the saying goes…..those who mind don’t matter and those who matter don’t mind.
• Your right to dance. In a Footloose type way, I believe music and dancing are good for the soul. Last week, whilst on a short break to Spain, hubby and I found ourselves in the hotel bar when a young Spanish dude walked in and set up a guitar, mic and amp. I could almost feel my feet, that were blistered and sore from walking on cobbled streets for hours that day, transforming into wee happy feet that were just made to dance!! Sure enough, the guy started singing in a voice that hubby compared to Antonio Banderas as Puss in Boots, and I was up and dancing. I danced all night, with the exception of regular breaks to ensure hydration and to fight the odd bout of mild dizziness when I’d gotten a bit carried away!! Almost everyone else remained in their seats, with the exception of one other woman and a barman. Despite their seated positions, I was surprised how many people praised me for not being afraid to just go for it….. “good on you!”, “Ach you were having so much fun!”, “I love you, you’re fab!” The next day a lady asked me if I had a headache and looked somewhat incredulous when I told her I was teetotal. I felt no shame whatsoever. I had fun. The next night there was a couple….he was playing Spanish guitar and she was singing and doing a bit of flamenco dancing. I remained in my seat because I feared if I started stomping my feet and clapping my hands I’d look disrespectful and I’d never want to be ‘that girl’. 

Surround yourself with true friends

It is my birthday next month. This week a friend is taking me to a glass sculpting workshop. This is the same friend who I went pottering with for Christmas……just look at my bowls!!!

On the day of my birthday that same friend, another wonderful friend, and I are going to walk alpacas. I love knowing people like this. I don’t drink, I don’t want a party or a night out in some club. I want fun……bring on the crafting and the alpacas!!

“Be yourself, everyone else is taken” Dr Seuss

Living with xx

Lucky Number Seven

Today is our 27th wedding anniversary. Last week was my seven year seizureversary. Not bad going! 

As ever, December and January have been fairly rough, although they haven’t been without joyful times too. 

My regular MRI scan was fairly uneventful. I’m waiting for my official results, but have had an appointment with my Oncologist and everything seems to remain quiet and stable.

Unfortunately he also answered me honestly when I asked if it was possible to beat my diagnosis…….. my own fault for asking a stupid question…. It seems the meaning of ‘terminal and incurable’ remains the same. This reminder came hot on the heels of a psychologist telling me I have PTSD. In fairness, she also told me I manage it very well and she wasn’t worried about me. It seems my irreverence to, and joking about, my diagnosis, is all symptomatic of the PTSD, but that’s a coping mechanism that seems to be working. 

Nothing particularly unexpected in any of these appointments to be honest. But probably a wee bit too much reality within a short space of time. After around 24 hours of overthinking, hubby and I found ourselves a bit overwhelmed and had a bit of a slump in our moods. 

We picked each other up, partially by booking a long weekend break in Marbella the evening of our first day back at work after the Christmas break!! We go in a few weeks and it has certainly lifted our spirits. 

Not content with all of this drama, we’ve had two large storms back to back. My wee brain does not love storms so I’ve been dealing with the usual headaches, bunged up sinuses and whooshing ears. 

All fairly rubbish. BUT in the middle of it all, I’ve had quality time with my wonderful husband, I’ve sea dipped with my sea sistas, I’ve met up with old school friends, and I’ve been reminded of the wonderful people I have in my life.

Not to mention the fact that I am still very much alive and beating the odds. Just 27% of people with my diagnosis make it to five years. Sometimes it’s easy to look at that in a negative light……’any day now’…….but we don’t let that thought hang about. Better to think of it as confirmation my time has not come. Sure what do stats mean anyway?? Who knows what’s around the corner for any of us? Treatment breakthroughs are imminent in respect of a number of neurological conditions, including Parkinson’s disease and some types of brain tumours. We continue to remind ourselves that I keep very well, there’s no indications of a return, and that we are incredibly fortunate to have each other to lean on. We work. We play.  We have a good life. Our 2024 diary is already bursting at the seams, with short breaks, gigs and fun times. 

We have each other and together we can conquer the world.

Living with….xx

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

Christmas cheer!

It’s difficult to believe another Christmas is nearly upon us! It’s our second without my dad. Yesterday when we were putting up our tree I found a single card in with the tinsel…. 

I have no idea why I kept this one card. It’s a few years old because he’d written in it, so before Parkinson’s Disease stole his ability to write and Lewy Body Dementia stole his ability to understand. How did I know to keep it? I miss my dad every day, but times like these make it hit home even harder now that he’s not with us anymore. 

Christmas is a time of reflection but also a time to look forward to the imminent new year. 2022 has been another good one for us. My scan results remain ‘incredible’ and, despite all the economic doom and gloom, hubby and I are fortunate to remain in decent employment. As the country song goes…..”We’re stuck in the middle where money gets tight but I guess we’re doing alright!” 

Most importantly we have each other. In January we will have been married for 26 years. Our lives remain full of love and support. Yesterday hubby dried my eyes and gave me a hug as I cried for my daddy. Then, as I finished decorating the tree, he came into the room excitedly telling me to go with him. He took me into our front room where he delightedly showed me what he’d done with the spare string of Christmas tree lights we’d found amongst the other decorations. The stunning baby grand piano that I bought after we lost dad is now more beautiful than I could ever have imagined….twinkling with fairy lights!! A piano fit for Elton John…….and probably far too good for my sometimes Les Dawson style playing!! My dad would absolutely love it, of that I am sure. 

I sat down and started to play. It was far from perfect, but a few bum notes couldn’t dampen my spirits. Look at what my wonderful husband had done for me. Christmas has come to our house and I can’t wait to celebrate another year of feeling healthy, happy and very loved. 

I realise it’s perhaps a little early for a Christmas blog, but what can I say?? The Christmas spirit has got me…..further enforced by a very chilly but great fun pre Christmas dip in the North Atlantic this morning. Later this week we head over to The Netherlands for some time with our son, our pride and joy. Yep, it’s going to be a very Merry Christmas for us. 

Happy Christmas to those of you who continue to give a damn! May your days be merry and bright. Xxx

The Riverbank

Thanks mainly to the Covid pandemic it’s taken years, but on Friday we were finally able to officially open our Riverbank Relatives Room in Causeway Hospital. The entire project was funded by Macmillan in NI from our Triciafest fundraising. It was a very small event due to ongoing restrictions in hospital environments, but we were able to invite a few guests. Unfortunately my father-in-law contracted covid so couldn’t make it, and there were a few more who were busy with other commitments, but those who were there all hold a special place in my heart. There were Macmillan nurses, Trust nurses, representatives from our annual gig venue, and a few genuine friends(although genuine friends really describes the previously named groups too). Not to mention my big sister……the person who’s support we simply couldn’t have done without over the past nearly six years, particularly during my treatment. My husband had just started a new job and was employed through an agency when I was diagnosed, so he was limited in the amount of time he could take off without leaving us bankrupt. I can’t begin to imagine how awful it was for him working all day, visiting me in a hospital over 50 miles away in the evenings, and then sleeping in our bed alone, while acting as essentially a single parent to our then 18 year old son who was doing his A-Level exams. All the while worrying if I’d make it through. My sister helped beyond belief. She travelled back and forth from her home in England, making sure she was there as much as she could be, leaving her husband behind and having to catch up on all her missed work in between visits. 

My family are amazing and it was wonderful to celebrate the room opening along with some of them. Unfortunately we lost our dad last year, but I know he’d have absolutely loved it and he’ll have been cheering us on from wherever he is. I’d have loved for him to be there, but the most important thing is that the room is open.

Those who were able to make it were treated to hearing me self consciously mumble some words of thanks whilst tripping over my words in a very obviously unscripted speech that I hadn’t been aware I would be expected to make. I posed awkwardly for photographs and again mumbled and blushed my way through a recorded conversation with the Chief Executive of the Trust. Thankfully I didn’t realise I was being filmed through most of it, so if nothing else it should be obvious I wasn’t playing a part and my comments were entirely authentic…..if somewhat stammered and unglamorously poured out. There was certainly no telephone voice, in fact I wouldn’t be surprised if subtitles are required for those from too far away from the area in which I live!

It was wonderful and a huge weight lifted to have the room formally declared as open, but in fairness it has been in use for a while. A point that was proven to me today when I went for my usual Sunday sea dip. One of my best friends, and fellow dipper, brought along a girl she recently met whilst swimming elsewhere. You can only imagine my surprise when, on introduction, she told me she’d been in the Riverbank Room! Her family had unfortunately found themselves in the hospital with a relative who was at the end of their life. To hear someone who’s been in that situation describe the solace and comfort our wee room had offered them was very special for me. As a former patient I know how noisy and busy hospitals tend to be, by necessity. A curtain around a bed offers nothing more than a veil of privacy and we all know every other person in the ward can hear every word being said. Patients’ families are sitting on hard plastic chairs beside beds, but our room has comfortable reclining ones, and even a sofa bed, in a quiet and friendly environment. The wall murals are stunning and allow some time to relax and imagine yourself somewhere else. If only for a little while, troubles can wait. The room is a place where patients and their families can relax, perhaps get some much needed sleep and maybe even stay overnight to remain close to their loved one. A place to make a cup of tea and remove yourself from the harsh reality of the Wide World for a while. A place where private conversations and contemplations can take place. A place to breathe. A haven.

I remain eternally grateful to everyone who played a part in realising our dream……there’s a huge team of decent and genuine people who continue to support us in our fundraising endeavours, and of course there’s everyone who played their part in saving my life and keep me going when I falter. People I am grateful beyond words to have in my life. The Team. 

While I hope nobody reading this ever has need to be in our local hospital, I also hope they can take some comfort in knowing there is a quiet space for them. If any of you find yourselves in need of it, please find your way to the Riverbank where you will be welcome and safe. 

In truth I think everyone should have regular riverbank time….. get outside, get yourself close to any body of water, be it a river, lough or the sea. Breathe in the air. Relax. Everything is going to work out exactly as it should. 

“….intoxicated with the sparkle, the ripple, the scents and the sounds and the sunlight, [the mole] trailed a paw in the water and dreamed long waking dreams.”

Extract from The Riverbank, The Wind in the Willows, by Kenneth Grahame.

Scores on the doors 2022

Another year, another rock gig in aid of Macmillan Cancer Support in Northern Ireland. As always, this year’s gig and raffle was a huge success. We had set our target as £3,000 because that would take our overall fundraising total to £20,000. 

It’s fair to say we absolutely thrashed our target!! There’s still money trickling in, but as of now we have £4,335 in this year’s Just Giving account and another £375 on its way!! Yet again we are humbled by the generosity of family, friends, musicians and businesses who continue to support us year on year. 

The gig itself was superb. The musicians were on top of their game, the raffle prizes top quality, and everyone was in great form. I couldn’t count the number of people who told me what a great time they were having and/or how happy they were to take part and/or be there! A few also mentioned our Riverbank Relatives Room in Causeway Hospital. This wonderful haven was entirely funded by Macmillan in NI, using money raised by Triciafest fundraising. After a long delay due to the covid pandemic, we are finally close to getting the room officially opened. This will be a wonderful day for us. It’s such an important resource for patients and families who are unfortunate enough to find themselves in the hospital and in need of somewhere to take a break from the world.  I am so sad my dad didn’t get to see it. We lost him in October in the same hospital as the room, but he wasn’t fit to visit it. I know he would love it. Especially the wall that resembles a section of our local river. The Cutts is a section of the river where lock gates result in fast flowing water. It runs alongside a path in a forest where he used to take my sister and I on walks to when we were kids. The incredibly talented painter who completed the art in the Riverbank Room, didn’t know The Cutts had special meaning for us when he chose to paint it on one of the walls. Hubby and I went to see the finished art and I cried when I saw it, not only is it stunning, it’s all the more poignant now that daddy has passed away. 

On a day of wonderful serendipities, upon leaving the room in tears, a familiar face happened to be walking past the door……… my Macmillan nurse! The man who helped save my life, who inspired the fundraising and the room!! It was wonderful to show him what had resulted from his kindness and expertise. 

I can’t wait to see the room officially open and in regular use. It’s wonderful to be able to show a tangible outcome from just a small portion of the money that has been raised.

What a great bunch of people!! We are truly honoured and eternally grateful to everyone who helps in whatever way they can. Team Triciafest continues to grow and the positive energy is flowing!! 

As far as my health goes, I remain better than we could ever have expected. My 6-month MRI scan results continue to indicate  “everything remains very quiet and very stable”…..I love this phrase for so many reasons but get great pleasure in telling my husband “Sure it’s just like me, very quiet and very stable!!” 

I continue to work 4 days a week and have recently moved into a slightly different role that I’m excited to get stuck into. I’m still sea dipping and attending music gigs. My piano playing is improving, though remains somewhat unpredictable at times lol. 

Life is good. Living with…. xx 

Magnets

I remain convinced neurosurgeons put magnets in their patients’ heads before they close them up. I simply cannot understand how else my weird serendipitous meetings continue to occur! 

A few months ago hubby and I went to a gig. Nothing unusual in that, except that it was during the day and in a venue we’d never been to before. The venue was seated, and we secured a couple of seats at a round table. After a short time, a girl asked if she could put her drink on our table. She was with a couple and, as there was plenty of room, so we suggested they share the table with us. They readily agreed and we began chatting, initially mostly about music. It transpired one of the girls works with a friend of ours who plays in a local band and has been a fantastic support to our annual Macmillan fundraising gig. It also transpired that her husband, who was the male in their group, had a brain tumour! Of all the tables, in all the venues……. Like us, they were living life and remaining positive about the future. We enjoyed their company and my fellow brain tumour patient and I even enjoyed a wee dance as our partners laughed from the sidelines! It’d been a while since I’d had a wee serendipitous meeting…..

Fast forward to this evening. This is our final night in Barcelona after a short break. We went out for a meal and, on our way back to the hotel, stopped off at a bar so hubby could enjoy a few beers. There was one table left outside. As we made our way over to it a lone man did the same thing. We laughed as the three of us reached the much sought after table at the same moment. The man was meeting a friend, but the table was for four so we decided to share it. He was English so inevitably we began to chat.

At first we made small talk about the hot weather and the city etc. Then we began talking about why we were all in Barcelona. He told us about how he’d moved here, after a life threatening injury cut short his career as a professional athlete.  We were interested in hearing his story and he gladly told it……. In short, he’d moved to LA to further his post athletic career. Whilst there he’d been hit by a car when out riding his bicycle. He suffered a serious brain injury and was in a coma for 2 months. During this time his insurance company had him moved back to England to undergo further recuperative treatment (cheaper!)

As this stranger described some of what he had experienced through traumatic brain injury, hubby and I were struck by the similarities to our story…… 

He described his determination to, not just survive his injury, but also to get his life back. To rebuild his neuro pathways. To return as much to his old self as he could. He remembered with gratitude those who had helped him on his journey, and described how his life has changed. 

He told stories so similar to some I tell that, in truth, both hubby and I were a little freaked out! He talked about a world famous musician who he believed had helped him on his journey, and about a premonition he’d had about him ending up living in Catalonia. In turn, I regaled stories of Billy Joel saving my life and my (somewhat less significant) premonition dream about meeting Neil Finn and discussing the reformation of Crowded House! 

We compared our ongoing ‘quirks’, including frustrations over short term memory loss, having to concentrate so much harder than we used to and our recognition of what and who is important in our lives. The similarities in our experiences, determination not to be beaten, and beliefs, was striking. 

Yet again I know some would call it coincidence, others would relate it to a higher being/ religion, or to karma and the belief that everything happens for a reason. Me? I still don’t know…… I have to reject the former due to the number of times this type of thing has happened over the last five and a half years. My favoured position is the latter….. energies and destiny. Karma bringing kindred spirits together. 

Or magnets in our brains?? Maybe!!

Self indulgence

I’m not prone to being self indulgent, but sometimes everyone deserves a special treat…….. right???

I played piano as a youngster, achieving up to Grade 6 standard. Then came the problems…….. my lesson was every Saturday evening at 5pm. This was around the time us rockers met outside the town music shop. Well, I say ‘music shop’ but it was more of a pound shop that happened to sell LPs and cassettes at the back of the store! After our afternoon meet up we would head to a local bar for a few drinks….. yes, I was too young, but I was a teenager, rebelling against the world! After the pub we’d head to someone’s house for more alcohol and then out that night to a very small rock club that was somewhat lenient in their door policy. Ironically, it was the safest club in the local area. Other, bigger clubs, were full of drugs and fights. Our wee club was safe as houses, with all us younger ones (especially the girls) protected by the older crowd…… though I was only aware of one fight in all the years I went there anyway.

Anyway, the point of that tangential story is that I gave up piano. My dad was very disappointed in me, clearly not really falling for my assertion that I needed more time to study for my GCSEs, but realising there was little point in forcing me to continue playing.

Following my brain tumour diagnosis, I started trying to do things I felt would help me stay as healthy as possible, for as long as possible. I stopped drinking alcohol, cut down on drinking caffeine by switching to herbal teas, changed my diet to exclude processed foods, cut my work days down to 07:30 to 16:30 4 days a week, started sea bathing weekly, and just generally slowing things down a bit. 

I decided relearning piano would also be good for my mental and physical health and around 18 months ago I bought myself a fairly decent keyboard and started practicing. Like everything, some days were better than others! Some days I could play an instantly recognisable tune……other days I struggled to find the right notes. Not to be deterred, I kept at it and have gradually improved. I’m definitely nowhere close to my former standard, but I’m better than rubbish…….sometimes!!

When my dad passed away last October, I decided I wanted to buy myself a proper upright piano. Daddy loved to hear me play and I knew he’d approve of my purchase. 

A couple of months ago, hubby and I visited a piano showroom. The owner left us to browse and told me to try each piano he had. I proceeded to move round the showroom, playing each piano in turn. I had already decided that the first one I had played was the one I was going to buy, but I tried each of the others just to be sure. I played each one and then told hubby the first one was the one I wanted to buy. He smiled and said”You haven’t tried them all. You haven’t tried this one……”, as he indicated to the baby grand he was standing beside. I laughed and said I wasn’t good enough for that one. He told me to give it a go, just for the craic!

I sat down at this beautiful shiny black Yamaha baby grand piano and giggled, protesting that I’d be rubbish. I played it and proved my point! I simply wasn’t good enough a pianist for this stunning instrument.

The owner walked back into the room and commended me on my decision to try this piano. He explained it was second hand but had barely been played and told me it was far superior to anything else he had in stock. To demonstrate this, he played the upright I had originally chosen and then played the same piece on the baby grand. He’s a concert level pianist and both times he played were beautiful, but the difference in tone between the two was clear to hear. Hubby and I both fought back tears as he played the baby grand. 

I agreed there was no comparison between the two pianos, but that I simply wasn’t good enough to buy the baby. He told me to go with my heart and hubby actively encouraged me by reminding me of the difference between them. I reminded him that it wouldn’t sound ‘like that’ when I was playing it, but he insisted I could make it sound incredible and that I’d be sure to practice if I owned such a wonderful thing.

The short version of this story? I bought a baby grand piano!! 

We live in a fairly small, semi detached bungalow. We’ve had to completely transform our front room, removing a hearth, changing the floor and painting the walls. 

The result? A beautiful music room that houses a shiny black baby grand and hubby’s ever growing record collection. 

I’ve spent a lot of time shaking my head and laughing at this act of complete indulgence. 

‘Who do we think we are??’

‘I fear I’ve written a cheque my fingers can’t cash!’

But do you know what?? My dad would love it! He lived his life with many luxuries that I dismissed as being unnecessary.  Now I know better.

My husband and I have both worked hard all our lives and continue to do so. Our son is 23 and starting the next stage of his life abroad, having just completed a masters degree at a university in Europe. Our house will always be his home, but it’s now a place where just the two of us live…..with our beloved dog!! 

I’m off to wake the neighbours with a wee tinkle of the ivories……their dog seems to very much enjoy it, I heard him howling along earlier!! 

Self indulgent? Yes. Completely justifiable? Absolutely. Joyous? You know it!!!! 

Thank you daddy. We miss you, we love you, but we’re doing you proud. Living with xxx

 “I’ll have you know, I’m playing all the right notes…….just not necessarily in the right order!!” ;)

Basket case!!

Finally, finally, finally……..after way too many attempts I finally got to see Green Day live! Previous attempts were thwarted by stupid cancer and stupid covid pandemic. The closer the date came, the more superstitious I found myself getting…… maybe it just wasn’t meant to be?? In the run up to it I was struck down by yet more sinus problems. Those of you lucky enough to have well behaved sinuses may not be aware that covid symptoms largely mirror sinus problem symptoms, so I was more than a little concerned when I developed the sneezing, thick snotty nose blowing and sore throat that always heralds a change in the weather! Yet again, grey clouds overhead became grey clouds inside my head!!  Being a human barometer is no fun at all.

Our plans were big ones due to gig reschedules…… we were going to Belfast, getting a coach to and from Dublin for the Green Day/ Fall Out Boy/Weezer gig, staying in a hotel in Belfast that night and the next night, before catching an early flight to Manchester to stay with my sister and brother-in-law and seeing Crowded House live. Two rescheduled gigs, complex planning and time booked off work to accommodate a fun time!! 

What if I didn’t have sinus issues?? What if I had covid?? I was almost scared to test because I knew a positive result would mean everything would have to be cancelled. Had that been the case, I was worried I’d see it as a bad omen…….a fear compounded by the fact that I haven’t yet received my most recent scan results.

Despite my fears I knew I had to be responsible, just like I’d expect from others. I did a test. Negative. Phew! The next day I did another one. Negative. Phew again!! 

Both gigs were incredible! Green Day we’re definitely worth the wait…… as they played their final song of the night, Good Riddance (the time of your life), I began to cry. I was completely overwhelmed by the song and the fact I was finally getting to see them perform it live. As the final notes were played, flames started soaring up from the stage and fireworks went off, I was a complete mess, but absolutely delighted!! Like an overstimulated child, I cried and laughed and whooped!! Awesome!

Crowded House was a different gig….. a bit quieter, but still emotional.  It’s not too often my sister and I agree on music, so it was fantastic for us and our husbands to attend a gig together, and even better to dance and sing along in the blazing afternoon and evening sunshine in Manchester!

On our return home, I covid tested again. Negative. Hurrah! There are some big things happening in our house, but I’ll save that for when it’s all finished……don’t want to skud it!!  For now, I’ll just keep trying to sort out these damned sinuses, get on with all the stuff that needs doing and hope against hope for speedy and positive scan results.

Thanks Billy Joe and Neil…….you made a wee princess very happy indeed!! Living with….. 

Cork-a-doodle-doo!!

This morning I woke up to the sound of raindrops on the roof and a cacophony of birdsong. The birds are ones I’m used to hearing in my back garden……. Magpies,  crows, wood pigeons, the joyous singing of my favourite bird, Mr Blackbird. This morning there was an additional and less familiar ‘song’, one I don’t hear in my back garden, thankfully ……cock-a-doodle-doo!!

We are in Cork. The county, not the city. We have travelled from close to the furthest north-east you can be on this island to close the furthest south-west. We left our home town in glorious sunshine

We travelled south and watched the grey clouds roll in

As we travelled beyond Belfast, it began to rain. As we crossed the border into the Republic of Ireland, it began to pour.

Thankfully we had checked the forecast ahead of our trip to Cork and, as such, had filled the car with clothing for every weather eventuality! Full wet weather gear?? Check!

As we reached County Cork, we checked the Eirecode given to us by the cottage owner. By this stage our iPhones had both decided we were now in the EU and we really weren’t wanted here…….they went mental and our maps were mucking about something chronic. Eventually, after a few wrong turns and some very bumpy narrow roads, we found our home for the next few days. 

Our cottage is so remote, the key was left in the door for us so we could get in. Thankfully, we entered to find a clean but traditional country cottage. There are three rooms. A kitchen / living room with a log burner (thankfully, because it’s chilly due to all the rain!!), a bedroom with a comfy big bed, and a bathroom. Enough for anyone. In sunny weather it would be ‘delightful’ and ‘quaint’. In the pouring rain it’s ‘grand’. A clean, soon-to-be warm (once the log burner was lit and had a chance to warm up), shelter. 

Once settled, we braved the weather again as we went foraging for food. We found a cute little seaside village with a number of eateries and chose a pub. It was busy and we were seated with a local couple who were also in for some food. 

Conversations with strangers can be such a joy and yesterday evening was no exception. This lovely couple were a pleasure to chat with and even gave us their phone number should we need anything……including full use of their washing machine and tumble dryer if our clothes all ended up soaking due to the weather! What a genuine, sweet couple. They didn’t even seem to mind my incessant chatter…….in my defence, I was tired and still trying to come to terms with how remote we were so my Scottish story telling roots came into full force…….”Billy Joel saved my life you know…….” 

We were in bed early and now up early, thanks to the local cockerel. It’s still raining but we’re not letting it stop us. I’m off to attempt to shower (hubby has warned the temperature is a little temperamental) and then we’re getting the waterproofs on and driving back into civilisation to see what we can find :) 

Gotta love an adventure! Living with xx

A Volvo from childhood!

I’m feeling a bit FriYAY this evening. Sometimes you just need to know you’ve made it to the weekend, though I realise how ridiculous that sounds when it’s said by someone who only works 4 days a week and was off yesterday!!

It’s been a busy time, both at work and at home. We’re still sorting out dad’s affairs and we’re organising this year’s Triciafest in aid of Macmillan Cancer Support. Asking for donated raffle prizes is the worst thing for me…… but also the best. You get the people that just don’t bother to answer your request or make promises they don’t keep, but then you get the wonderful folk whose generosity seems to know no bounds.  It’s going to be another great year……it will be our fourth gig (we missed one due to covid), and with £17,000 raised so far, the aim this year is to get our overall total over £20,000. We’re also gearing up to get the Riverbank Relatives Room officially opened at long last. 

Now that we’re finally out of covid restrictions, 2022 is busy for other gigs and trips too. We have so many reschedules it’s crazy! The next one is next week and I’m ridiculously excited, not just because it’ll be a great gig but also because we get a wee trip away and I get time with my big sister. What could be better??  

Anyone who knew me when I first very dramatically went off my feet following my grand mal seizure in January 2017, might remember that I was in training to walk the West Highland Way with my sister. It was all booked and I was upping my steps in preparation. Unfortunately the whole brain tumour diagnosis overtook things and I wasn’t fit to do it. My sister graciously waited for me but last year I confessed to both her and myself that I’m very unlikely to ever be able to walk 98 miles, no matter how many days we spread it across! I told her to ignore any military training she may have secretly undergone without my knowledge and to go on without me……. She has booked for her and her husband to walk it next year. My hubby and I are going to do the first bit with them……..the easiest 10 miles of the trip, and then we’re going to go on a wee Scottish road trip. 

I think my dad would be very proud of our plans….. I miss him but think about him often. In fact, just half an hour ago somebody mentioned a Volvo on a TV programme we were watching, and a childhood memory popped into my head. When we were still living in Scotland (I would’ve been about 5 or 6), dad had a red Volvo. It was one of the really boxy ones, like something a child would draw if you asked them to draw a car…… boxy but good, right?? The reason I remember dad’s Volvo so well is because the left back door wouldn’t shut properly. My dad used bungee chords to keep it shut and we were warned not to sit near it, just in case…….. This was late 1970s, there were no seatbelt regulations back then. I can clearly remember the fear every time dad drove round a corner and my sister and I clung together, bracing ourselves against the seat in order to try and prevent  ourselves from being thrown towards the broken door…….a fate that would undoubtedly, in our minds, lead to the bungee chords snapping and us been thrown out of the car to our certain deaths!! The memory made me chuckle. The world is a very different place these days. In today’s world, health and safety is a much bigger priority for people than it was back in the late ‘70s!  

On the cancer front, other than a few niggles, I’m feeling good and keeping well. The beginning of the year brought the usual sinus problems and the changing seasons brought the usual changing air pressure headaches. I’ve had a bit of an ear problem too, but all things considered I remain fortunate in my ability to lead a fairly normal life. I’m still working four days a week, I sea dip weekly, I go for walks, I go to gigs, I read books, I enjoy life and I plan to keep doing so for many, many years to come! 

I live a safer life. I don’t travel in cars with doors held shut with bungee chords, I don’t travel in cars without wearing a seatbelt, I don’t drink alcohol, I don’t even drink fizzy drinks. I generally eat healthy meals. I drink mostly herbal teas and, after a recent trip to visit our son in the Netherlands, I’ve discovered the deliciousness of making my own fresh ginger tea. It’s probably cheaper that ginger tea bags, definitely tastes even better, and I’m sure must be healthier. Hubby even bought me a mint plant so I can soak the leaves in boiling water and enjoy fresh mint tea too. 

As I extol the benefits of a healthy life, I feel the need to confess I’ve just polished off quite a few squares of fruit&nut….. and I’ve  got a bit of a mouth ulcer starting because I bit the inside of my lip whilst tucking into a caramel square the other day! As good friends of ours, the musicians of the mighty Nasa Assassin space pronk group, would say “I’m not giving up living to live”!! 

Next scan due in June/July…… living with xx

Dam[ned] fine!

We leave Amsterdam today after a weekend break. We came to see our son who’s studying in The Hague, and we decided to make a short break of it. A wise move…….we chose to stay in Amsterdam and have really enjoyed strolling around the city, marvelling at the architecture and soaking in the chilled out atmosphere. No coffee shops for us, but they do a fabulous fresh ginger tea, made with strips of raw ginger in boiling water……Pukka ginger teabags will never taste the same again, I’ll be making my own fresh tea from now on!

We have had fantastic weather for our entire stay, with blue, sunny skies. There’s been a breeze, but it’s remained pleasant. 

Best of all we got to spend an afternoon with our son. We’re hugely proud of the man he’s become and are quite sure that his time spent over here will have helped him grow as a person. The world is most definitely his oyster and we can’t wait to see where the next stage of his life journey will take him.

There’s been one negative so I’ll get that out of the way and then end on more positives!!

The negative? The flight. As we were beginning our descent into Schipol, my ears started to scream. The pain in my ears and across my forehead was excruciating. In fairness I’ve had persistent sinus problems over the past few months and hubby experienced  much the same thing. Maybe we’ve just been unfortunate, but I’m dreading the flight home and we’ve both discussed some trepidation at future travel involving flights of more than an hour. We’re booked for a short break in Barcelona later in the year and are already considering if we should cancel in favour of something closer (but hopefully still with a bit of sun!)

Finally, ending with positivity as always…… I set myself a challenge to see 3 things during our trip -

1. Tulip fields

Yes, it was from a train, but none the less, TICK!!

2. A windmill

Yes, again it’s from a train and I very nearly missed it, but TICK!!

3. A little mouse with clogs on

The mouse hid before I got the photo, and we moved the clogs off the stair, but I swear he was there going klip klippity klop just seconds before this photo was snapped!!

Homeward bound now. Leaving sun for rain, but still smiling at the memories of a weekend well spent.

Step on!

I took the grand mal seizure that led to my diagnosis whilst asleep in bed, in the early hours of the morning. During the day I had been on a hike with a very dear friend. I was in training to walk the West Highland Way.

My friend asked me if she’d broken me, but I’d been doing a lot of walking in the preceding weeks and I don’t think exercise gives you a brain tumour!!

One thing has haunted me a bit since then……my phone pedometer showed that day as my highest number of steps. It’s been my record for over 5 years. I’ve never made a conscious attempt to try and beat it, but I’ve often hoped and believed that I’d do it one day. Every time I’ve felt like I’ve covered a lot of miles in a day, I’d check it to see if I’ve done it, or even got close …… the days I feel like I’ve been tramping for miles, the days I joke my pedometer will think my phone’s been stolen……. None of them hit the steps record I hit on Day 1 of my brain tumour journey.

Some day, it had to happen……..

Hubby and I are currently on a short break in Edinburgh. It had all started off a bit wrong…… we almost missed our flight after I muddled up what day we were leaving, and then due to delays at airport security! Thankfully other passengers generously let us queue jump to get us on the flight on time.

We’d booked a hotel that’s part of a chain that generally offer well priced, well situated hotels. Nothing flash but very comfortable beds and a guarantee of a refund if you don’t get a good night’s sleep. We’ve stayed in their hotels many times, in many locations, without issue.

Unfortunately the one we chose in Edinburgh had a horribly uncomfortable bed. Very far from their usual standard. It was clearly a temporary or replacement bed because it was smaller than the gap allocated for it between the bedside lockers, and it was hard as a brick. The pillows were also of very poor quality. 

After hubby woke with neck pain and me with back pain, we  decided to move to another hotel in order to ensure we could enjoy our trip. 

We tried to complain to the manager and explain why we were cancelling our booking and expected a full refund. She told us she couldn’t authorise any refunds, offered us a free breakfast (which we declined) and gave us two phone numbers and an email address for Customer Relations…… the first number was a number for staff to report complaints made, the second number was wrong, the email address is no longer in use! 

After some online research, I found a phone number and rang it…..to get an automated response about phone lines being very busy and asking me to leave a message. I did so twice during the day but heard nothing back. 

I then found an online ‘feedback’ form that I completed. Eventually I received a response via email. It told me they would look into my complaint but please not to contact them by other means as it could slow their response….. it then said a response could take up to 35 days!! 

We checked out and moved into a different hotel. A nice one. Not too much more expensive but I’ll be fighting for our refund from the first one! 

Determined not to let this ruin our trip, we took ourselves out for a late breakfast and a walk. We walked around the city. 

The next morning we woke in a comfy bed. It was a lovely Spring day and we enjoyed a walk to Leith. In fairness we had thought Leith was the seaside……it’s actually a working dock and there is no beach anymore. Regardless, it’s a nice place to sit outside and enjoy a cuppa and a wee bun!

Anyway, the point of this post wasn’t to complain about our rubbish hotel choice, rather it was to celebrate. After our walk to Leith I couldn’t help but wonder if I’d finally beat my highest steps……. I checked my phone but discovered it fell slightly short………

BUT, on the previous day I’d done it!! Our day exploring Edinburgh had slayed a dragon…… I finally beat my highest number of steps!! I took 86 steps more than that fateful day 5 years ago and a couple of days later I still feel good! 

It’s achievements like this that we need to celebrate. A small thing, perhaps, but undoubtedly proof of huge physical improvement, not to mention the crushing of a psychological barrier!

Today brings a day of meeting friends and attending a gig. 

Living with…. Xx