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

Spring is within reach!

After my last, fairly gloomy post, I thought it would be good to update with a brighter mood! 

As ever, January wasn’t a particularly joyous month for me. February hasn’t been a lot better to be truthful. Thankfully, with only today and tomorrow to go until we’re into March, and a huge improvement in the weather, I’m definitely starting to feel much more like myself again.

I’ve asked myself repeatedly why I get so miserable in January every year. Honestly I think it’s a big mixture of things. This year seems to have been something of a perfect storm….. in many ways literally, with three big storms in a row. 

First there was Dudley, then Eunice, and finally Franklyn. Each one brought changes in air pressure that my head just doesn’t like. Changes in barometric pressure are scientifically proven to cause swelling within the brain…… this can be very unpleasant for anyone who has had surgery/ injury/ experiences migraines etc. Importantly for me, storms also lead to large sea swells that have kept me out of the water. My happy place that’s so important to my emotional well being.

On top of that, my hormones remain somewhat unpredictable. They have been that way since my teenage years, but treatment induced early menopause has brought a whole new range of experiences. Thankfully I haven’t had the fits of rage some women describe…….I’m more likely to just want to hide and definitely haven’t been feeling very sociable.

Finally, January is a significant month because it’s the month I had my initial grand mal seizure and was diagnosed with my grade 3 brain tumour. It’s the month our lives changed forever so there’s probably a level of subconscious trauma attached.

Losing my dad in October didn’t help things this year. He was a huge part of our lives and we miss him.

I try really hard each year not to let it happen. Especially this year. January should have been a good month…… our 25th wedding anniversary, starting to move out of Covid restrictions. Not to mention more positive scan results…..although I didn’t get these in writing until February. Seriously though, how could I remain a bit glum when holding a letter that said

 “I am pleased to let you know that your repeat MRI scan done on 2 December remains very stable with no signs of disease recurrence. All looks quiet.”

Regardless, despite my best efforts, it remained a tough few months. 

As always, these things can’t last. As I look out into my back garden this bright Sunday morning, I can see a small clump of yellowy-orange crocuses that have started to bloom. They even held their own through last week’s snow! 

Spring is definitely winning the battle. I’ll be back sea dipping in no time, and we’ve got a few short trips coming up; Edinburgh in March, and over to the Netherlands to see our clever son who’s studying a Masters in The Hague, in April. We also have loads of rescheduled gigs to look forward to this year, not to mention more short breaks in Dublin, Cork, Manchester and Barcelona. 

We’re planning our annual music gig in aid of Macmillan Cancer Support and are hopeful of pushing our overall total raised to over £20,000 this year. With the removal of Covid restrictions, we’re also hoping to get our Riverbank Relatives Room in our local hospital officially opened. I’m really excited about that. It’s something that makes me so proud of how a group of decent people can come together and achieve something really special. 

Marching into Springtime, living with xx

Wintering

I’m starting to think hibernation is the only way forward. This year, we thought we’d done it……… we thought we’d made it through winter without me becoming unwell. No mean feat, let me tell you! 

But unfortunately it wasn’t to be. 

Mid January I started experiencing night sweats and palpitations. They began waking me up every night, leading to fatigue and a general feeling of being unwell. 

I tried to charge on through, but eventually it all came to a bit of a head when I woke up one morning, feeling like I had a strap pulled tight around my chest and ribs. It happened two mornings in a row and I was sent to A&E both days. 

What was going on? 

It became clear that my hormones were a bit off track. In fairness, they’ve always been a bit problematic, and cancer treatment pushed me into early menopause, which hasn’t been a joyful experience so far. HRT proved a disaster so I was back to square one.

Further blood tests also showed low sodium levels. Probably caused by drinking too much water!!  Not enough salt?? From drinking too much water?? That’s the ultimate cruelty. There’s me, trying to do everything within my power to keep myself as well as possible. Obeying all the rules…… plenty of water, healthy diet, no alcohol, no fizzy drinks, no processed foods. Only to discover I may have made myself worse. Unbelievable.

Low sodium symptoms appear to be somewhat similar to brain tumour symptoms…….. headaches, dizziness if you move too quick, waves of mild nausea, general fatigue.

On the advice of my GP, I started to rest up whilst limiting my fluid intake. 

I was starting to feel a little bit better and was hopeful of a return to work, when winter decided I hadn’t had things hard enough yet……. In came the stormy weather. 

Not everyone will understand (or believe) the impact changes in air pressure can have on those of us with brain injuries. I can assure you, it’s a thing. My sinuses and ears  get blocked up and I feel like there’s a vice being squeezed around my head or I’m being pushed down on from above by something very heavy. 

It’s painful, it’s exhausting, and it’s so frustrating. I want nothing more than to shake the butterflies out of my head, but I can’t. I get short periods of respite when the sun peaks out, but the weight settles back in as the dark clouds roll in again.

I can’t even get into the sea, because I haven’t been strong enough.  The swells have been too big anyway. Miserable? Absolutely. 

I’m now at the end of my second week off work and am hopeful for a return next week. My arms are black and blue from blood draws, although I can’t credit the nurses in my local A&E and GP surgery enough for their professionalism and the kindness they show me and my wee, thin veins.

What a miserable post! Time to turn things around…… what’s good?? 

The most obvious thing is that I’m now 5 years into my cancer journey, and I’m still here. It’s not without challenges, but I remain one of the lucky ones.

I remain supported by the best husband a girl could ever dream of.  Not to mention a wonderful sister and friends most people could only hope for. 

I have a job I enjoy, and am generally surrounded by understanding colleagues. I am still capable of performing my role to a high quality and I enjoy the structure and routine it provides me………. It’s even better nowadays due to the covid ‘work from home’ rules. I miss face to face contact with colleagues and friends, but the peace and quiet of working from home makes it easier to concentrate and is definitely working for me.

Finally, we’re now well into February. Spring is just round the corner. Covid is starting to run out of steam. There are gentle plans in the diary…… 

If I were a bit older, and had the financial means, I’d definitely consider wintering somewhere with better weather. But I remain grateful that, despite how I sometimes feel, I’m still relatively young and have plenty of life left to live.  Plus I live in one of the most beautiful places in the world, whatever the weather.

Pass me the salt, bring out the sun, I’m coming back!!

Living with xx

2022 already??

It’s hard to believe it’s 2022 already. Hopefully, hopefully, hopefully, we’re finally starting to pull ourselves out of the Covid pandemic. Variants seem to be less deadly, we’ve got vaccines, and treatments are being developed. Amazing what can be achieved when the experts focus their minds and get the funding they need. Wouldn’t it be great to see the same thing happen with other deadly conditions?? Cancer, heart disease, dementia, motor neurone disease, multiple sclerosis……. To name but a few. 

January is the month of the year I dislike the most. I know I write  that every year, but it remains a fact. No matter how much I try to tell myself it’s a new year, a new beginning….. my focus always gets dragged to it being cold and grey, and the anniversary of me finding out I have a terminal condition. So I write this blog entry in an attempt to do what I try to do in January every year……..find the positives. Here goes…….

The first one is really a no brainer, if you’ll excuse the pun! My last MRI scan was in December. Usually I hear some news within 2-3 weeks. A fortnight ago, after no word and many nights of lost sleep, I rang to try and get an update. I was told my scan results showed stability and I’d get a letter soon. This is the best news ever, yet I don’t feel able to properly appreciate it until I see it in black and white, or hear it face to face…….. big demands in our current covid restricted world, but hopefully soon?…

Second positive. Anniversaries. Last week marked my five year seizureversary. Brilliant!! What could be better than that, especially given my stable scan results?? It’s also four years since my near death experience of phenytoin toxicity, so I should be feeling lucky and happy, rather than lamenting the grey season. 

The cancer journey is undoubtedly a traumatic one, not just for the patient, but also for those around them. After 5 years living with, there’s no denying our lives have changed. Never forgetting, of course, that many of these changes are positive….. better and stronger relationships, clearer priorities and a fuller appreciation of life.

But it’s not just healthversaries we get to celebrate this month…… this week is our 25th wedding anniversary. 25 years! We are justifiably proud of that achievement. Definitely not to be sniffed at. Cancer has made us stronger.  Unfortunately plans of going on a romantic trip to Venice seem unlikely to come to fruition this year, but there will be other opportunities when the world opens up a bit more. There’s still plenty to look forward to this year, with rescheduled trips to The Netherlands (fingers crossed…..that one might fall too, but we’ll see soon), Edinburgh, Dublin and Manchester all in the diary. Even if there have to be more changes, it’s a lot more hopeful than it has been the last 2 years.

All in all, I really have little room to be whining about January being grey and rubbish! So welcome to 2022. The year the world unlocks. The year we get on with our lives. Let’s get out there and enjoy!!! Xx

Here’s to us!

Here’s to all of us! We have survived another challenging year.

2021 has brought some bad times. 

For me, personally, the loss of my dad in October was, and still is, heartbreaking. Another surreal entry in the book of life.  

For everyone, Covid still sucks and life has changed in so many ways.

I’m waiting for scan results and scanxiety is ruling my nights at the moment, despite knowing I can’t influence the outcome or how quickly I’ll be told it. I’m restless, on edge, troubled, despite not feeling any worse physically than I have before. I’ve definitely gained some muscle strength and my physical self is not as weakened as it was in the few years post treatment. Mentally I’m generally good, but remain wobbly when too much is going on. Dad’s  deterioration and watching him pass away was one of the hardest experiences of my life. Unfortunately there was little time to grieve with all the ‘stuff’ that needed sorted afterwards. 

But amongst all the tough times, flowers still grow. Our annual fundraiser for Macmillan in NI raised a phenomenal £4,500, despite reduced capacity due to Covid restrictions. My weekly sea dips continue to give me peace and relaxation, not to mention time with a very dear friend. 

I remain spoilt with love from my incredible husband. My happiest time of this year was when we managed to get away for a short break to Jersey. On that beautiful island we forgot all our troubles, washing them away in the sea and shaking them off with long, scenic drives and peaceful walks. A very relaxing and happy time for us.

Love and good times have also been shared with our son and my sister. Not to mention my true friends…..my constants,  who remain by my side. We share good times, we support each other, we live happy lives.

2022 is a big year for us. In January we have my 5 year seizureversary and our 25 year wedding anniversary. I hope to celebrate them with stable scan results. 

In November I have my 20 year workversary. Getting the job I’ve done for almost two decades remains an important life landmark for me. I’m fortunate to genuinely enjoy my job……. most of the time! 

We have a year full of planned reschedules. Trips and gigs a-plenty! We’ve no way of knowing what will go ahead and what will be cancelled, but there’s at least a few things in the diary that I’m looking forward to with confidence.

I genuinely believe 2022 will be better for everyone. I believe we will see continued easing of restrictions. I have great hope that future covid variants will become less dangerous and that vaccinations and treatments will improve to the point that we can go back to living life with more freedom.

So here’s to us. The survivors. Here’s to 2022 xx

And it stoned me

Last night hubby and I went to a gig. Nothing particularly unusual in that. Despite my rocker heart, I love a lot of different music. In my teens I’d never have admitted to my eclectic musical tastes……it wouldn’t have been cool for me to be wearing a Slayer t-shirt whilst admitting I knew every word of Neil Diamond’s The Jazz Singer album!  Nowadays I don’t mind admitting to a wide taste in music, and it’s something my husband and I are proud has filtered down to our son. We love our rock but we’re not stuck in a genre. If it sounds good to our ears then that’s enough for us. Down with music snobbery, I say lol!!

Last night we went to see Van Morrison. I was a little uncertain about it. He has such an awful reputation as a crabbit wee man who can play brilliant gigs or awful gigs. As we drove the hour to the venue, I hoped he wouldn’t start the political nonsense he’d been slated for starting at a previous event. I was also a bit concerned he’d spin off into some very jazzy jazz…….. perhaps something a bit too jazzy for my liking. 

Turns out I had no need to worry. There is a reason why Van the Man can still pack out venues, despite being grumpy and opinionated. Quite simply, he’s a musical genius. Never in 30 years of going to music gigs, have I witnessed as much talent on one stage. Van himself was outstanding and he clearly chooses his band members very carefully. Each one had incredible talent and, combined, they put on a show that left us crying, singing, dancing, and elated. 

I’ve been to a lot of gigs and have experienced some incredible live performances. I love local bands, as our annual gig for Macmillan is testament to, but seeing some of the big stars always has a draw too.  I will never forget my first Metallica concert, the pride that I had managed to get into the front row, the disbelief when Hetfield came on stage, the horror at being crushed against the barrier as the crowd surged forward, or being dragged over the barrier by a security guard……. I wore those bruises like a badge of honour in PE class later that week! I’ll never forget seeing Chris Cornell support Aerosmith and being mesmerised by his voice. I’ll never forget sobbing as Foy Vance’s band left the stage one by one during ‘Guiding Light’, until it was just him singing and playing the piano on his own. 

And I’ll never forget Van Morrison and his band. There were no bells and whistles. No fancy lighting or screens. Just talented musicians, clearly loving what they were doing. As they played newer songs alongside classics, the crowd were swaying, singing, cheering and clapping, despite it being an all seated venue. By the final few songs very few people remained seated………. I certainly didn’t!! 

We left that venue buzzing with adrenaline, knowing we’d just experienced something very special indeed. Life remains full of joy when you’re moondancing on the bright side of the road!! 

Lost

In April last year I wrote about losing my blue swimsuit and how my friend blamed that loss for everything bad that was happening in the world, from her thyroid becoming under active to the Covid pandemic!

I bought a new, identical blue swimsuit and was delighted to be able to buy a smaller size, but it always puzzled us what had become of the original one.

A couple of days ago I was looking for tights. I needed them because I was preparing to wear a dress……something I haven’t done for a long time. 

I wish I could write that I was putting on a dress for a wedding or a christening or another happy event. Unfortunately I wasn’t. I was putting on a dress for a funeral. Not just any funeral. My dad’s funeral. My wonderful, handsome, witty dad. I can’t quite believe we’ve lost him. He had Parkinson’s Disease and Lewy body dementia so had been slowly deteriorating for years, but the end came very quickly. It seems like one moment he was here and the next he was gone. We miss him. 

When I was looking for those tights to wear to my dad’s funeral service, I found my lost blue swimsuit. It was caught down the back of a drawer in the base of our son’s divan bed. The bed used to be ours and I stored my sea swim gear in that drawer before we moved it into our son’s room.

I hope that my friend’s theory was right and that by finding that swimsuit I will be able to reverse all the bad things that have happened in the last 18 months. Maybe her thyroid will rectify itself.  Maybe there will even be a cure for Covid. 

Unfortunately, the one thing I want most, can’t happen. My dad can’t come back. My husband’s father-in-law cannot come back. Our son’s granddad can’t come back. Our lives are irrevocably changed. No amount of superstition or lucky clothes can change the loss we are feeling. 

As I swim in the sea tomorrow morning, I will think of my dad. I will remember him sitting in the cafe with my hubby; the two of them watching us in the water and discussing what a ridiculous pastime dad thought it was. I will let the waves wash away my tears and imagine my twinkly eyed dad, laughing at the sight of me in the water.

“No-one is actually dead until the ripples they cause in the world die away.” (Terry Pratchett)

Good times, bad times

October has been a big month. It started off with our third fundraiser for Macmillan. It had been postponed from last year so it was great to be able to finally go ahead. Despite restricted numbers, we brought in another £4,400 so I’m delighted with that. 

Unfortunately, the day before the event, my dad was admitted to hospital. My sister had come over from England and was happy to sit with him to allow me to attend our fundraiser. I felt bad, but dad seemed much more settled than the previous day and I knew people were depending on us.

The next week was mostly spent sitting with dad, watching helplessly as he deteriorated at an alarmingly rapid pace.  The Consultant explained that a full recovery was highly unlikely. In the first few days it was hoped he would recover enough to be released from hospital, but it would’ve been into full nursing care in a residential home. 

As time went on it became apparent that our dad, who we loved so much, was not going to survive. On his eleventh day in hospital, my sister and I sat by his bedside all day. He didn’t open his eyes once and it was clear to both of us that he would be leaving us soon. We sat until the evening but agreed to leave at 6pm. We both knew we’d need our energy for the days ahead.

Our dad passed away that night.

Ironically, he was cared for by the same Consultant and many of the same nurses, in the same ward where I was cared for during my hospitalisations four and a half, and three and a half years ago. We even had comfort, help and advice from the Macmillan palliative care team that I had been fundraising for just the week before.  It gave me comfort to know he was with good people and getting the best care he could possibly have. We wouldn’t have wanted dad to survive only to lie in a bed the rest of his days, unable to communicate properly and unable to care for himself. His passing brought him peace.

This, of course, is somewhat cold comfort. Dad is gone. The day after tomorrow we will have a funeral service for him and the day after that he will be cremated, as were his wishes.

I still can’t quite believe it. The time since his passing has been filled with funeral plans and getting his affairs in order. Hubby and I have spent time with dad’s partner and friends. It has gone by in a flash. We haven’t had much time to reflect. 

Now that we’ve done as much as we can, hubby and I are planning to take tomorrow as a day for ourselves. Yet again I am struck by how lucky I am to have my strong and supportive man by my side. He is grieving too, but his primary concern is making sure I am ok. 

There’s not much more to be said really. Tempus fugit. Time flies. Keep your loved ones close because you never know how long you’ll have with them. Dad lived a good life but, at 77 years old, it has still ended too soon.  We miss him.

Yuanfen

“Yuanfen - the mysterious force that causes two lives to cross paths.”

What a great word! I’m pretty certain I’ve benefitted from some yuanfen quite a few times. When I discovered this word recently, one friend in particular immediately sprang to mind. 

This friend is just a wonderful human being. She’s funny and kind and someone I can be completely myself with. She’s an amazing mum and grannie, who generously gives her time and energy to her family and friends, without ever expecting anything in return. She also works in a care environment, giving yet more time and energy to those who need it most.

She is someone I met through our jobs. We spent some brilliant years sharing an office, along with another great friend. We remain firm friends and both of them have shown their true, vibrant and beautiful, colours to me many times. 

When I was first diagnosed and going through treatment I had some fairly dark days. I used to joke with my friend that she must be psychic, because she always seemed to appear when I needed her most, without me saying a word. That hasn’t changed. She always seems to pop up when I need a friend. We go out for cuppas and often indulge in ‘a wee half n half’, when we get a scone and a bun and split them between the two of us. When the weather is nice we go for walks and ocean toe dips. We have a friendship that involves complete trust, and I cherish our get togethers. Being friends with her is easy. There’s never any risk of misunderstandings or bad feeling. There’s no competition or put downs. It’s all about lifting each other up and celebrating each other’s triumphs. What a special relationship to have.

Today we met up for a cuppa and a wee half n half, and she told me something that yet again enforced my belief that we were meant to become friends………... Recently her job caring for others took her into a hospital environment. Whilst there she found herself in need of somewhere to change her clothes. She was directed to a room, she opened the door………and found herself unexpectedly in The Riverbank Relatives Room! She told me that initially she thought somebody else had copied our idea, but as she admired the wall murals, she spotted one of our unique features…… the bride and groom that represent my sister and brother-in-law, who so generously asked for donations to our fundraising in lieu of wedding presents. She knew then with certainty that she was in our room. She was one of the many people who contributed to making the room a reality. She has given both money and time to help with the Triciafest gig, and has been unwavering in her support since we began the project in 2019. 

As she told me of her serendipitous visit to the Riverbank Relatives Room, my heart almost burst with joy and pride. To hear of the room being used was joyous, but the fact that the person using it is one of my favourite people in the whole world, verged on being surreally perfect. 

Sometimes I feel like we are joined by invisible thread. 

Serendipity, fate, destiny, yuenfen….. whatever you call it, some people are just meant to be friends.

Staying lucky

Today has been a strange day. In some ways troubling, yet in other ways joyous. I’m not really clear how I feel about it all, so I’m writing the feelings out of me because that always seems to help me process things when the rollercoaster starts to make me feel a bit dizzy.

Three times today I’ve been very clearly reminded that life is precious and short……. Through watching someone I love deteriorate before our eyes, learning of someone’s untimely death from cancer , and then being reminded of another recent death of a young man from a brain tumour. This is life, I understand that, but sometimes it’s just sad and frightening. 

On the flip side of that, I spent a very productive hour this afternoon preparing goodie bags for this year’s gig in aid of Macmillan Cancer Support. It’s not far away now….. 2nd October…… and the preparations are in full flow. The t-shirts are ordered, the raffle prizes are in, tickets have gone like hot cakes; both for the gig and also now the raffle tickets are starting to steadily sell too. I don’t expect to bring in as much as we did in previous years, simply because our capacity is likely to be limited due to Covid regulations, and a lot of people are broke after being furloughed or maybe even lost their job completely. Realistically we’ll still do well and I know the charity will be grateful for it and will put it to good use to help local cancer patients and their families. Not to mention the joy of bringing together a group of like minded and decent people, to enjoy live music and help remind each other there’s still good times to be had and good things to be involved in, despite a pandemic. Coming together as a team to help a charity that does so much good for those being impacted by an illness that affects one in two people in the UK, is a momentous and humbling thing. I feel very grateful to have my name attached to it.

So very much a mixed day. I’m going to bed with a book in my hand that I very much hope will make me smile. The author is best known for writing and starring in a comedy sitcom on tv. I hope she writes a book as well as she writes a script and delivers the lines! 

As hoped, writing my feelings has helped me understand them a bit better. I’m sad that life is cruel to some people, whilst also being grateful for all the good fortune I have had and continue to have. I’m especially grateful for the love I’m surrounded by. I’m sorry for those who aren’t as lucky as me, but I’m glad our wee team can do small things that might help.

Living with xxx

People are……

The Doors song tells us “people are strange, when you’re a stranger”. That can certainly be true sometimes, but sometimes people can be kind when you’re a stranger. I’ve certainly met my fair share of kind strangers over the years, and I hope that I sometimes pay that kindness forward to other strangers. It’s not much to do really, is it? After all, to quote another song, “we’re just all lost souls, swimming in a fish bowl”.

In the last few days I’ve met a few kind strangers…… there was the lady who complimented a photo I put on a social media page of Bad Eddie’s shipwreck in Donegal. She thanked me for sharing it and even said she’d pay for a print of it! I explained it was just an iPhone snap and that the weather had been so good it would’ve been impossible to take a bad photo! I private messaged her all the photos I’d taken of this beautiful location. Her response was to tell me she had tears in her eyes at what she classed as my kindness. It was nothing but a few snapshots, but to this stranger it seems it meant a lot. Her response was absolutely wonderful. Heart warming.

Then another kind soul appeared. Hubby and I received a message from a friend to tell us a guy we didn’t know had donated a guitar as a prize for the raffle we run as part of our annual charity music gig for Macmillan Cancer Support. To add to the kindness, our friend is getting it signed by a number of internationally known musicians! Another amazing prize to add to the list. It sounds so fake to say it’s humbling, but I can’t think of a better word to describe the generosity of those who’ve donated prizes….. many of whom have been virtual strangers.

This morning I wasn’t with a stranger and I wasn’t a lost soul or swimming in a fish bowl. I was a contented soul, swimming in a huge ocean, with a dear friend, watching the sunrise. 

The 5am start was more than worth it!! The day continued as it began….. with beauty and peaceful joy. After the sunrise dip, hubby and I went for a drive around the beautiful coastline we are so fortunate to live near. 

People can undoubtedly be strange when you’re a stranger, but they can also be kind and generous and soul warming. 

There are wonderful, life affirming experiences and people out there, we only need to keep our eyes and minds open wide enough to see them.

Living with……

Relaxing by the sea

A week off work. What a joy!! I’m lucky to still genuinely like my job, but a break is always good. 

The adventuring began with a visit to The Gobbins Cliff Path with hubby, my sister and brother in law. I’ve been before, but I’ll admit I’d forgotten I’m not the girl I was back then……it was tough going. My calf muscles cried for a few days after, but they didn’t scream, just a wee yeeouch on stairs! More importantly, I did it!! That shows a lot of progress re what my body can do, especially as it was a very warm day. I didn’t see dolphins this time, but I felt great about doing it, and the sea air took away the beginnings of a cold/hay fever, so it was all good.

The following day saw more excitement….. Finally! Finally, finally, finally, Covid restrictions relaxed enough to let us go on our long awaited short break to Donegal. Three nights in a nice hotel, with hubby’s birthday on day two. Unfortunately he had to do all the driving while I wait for common sense to prevail at the DVA……. or at least until they read my request for a review, alongside the supporting letter from my Neurologist.

Our short  break came at just the right time. I think we both needed it. Marble Hill is more remote than we realised, but that’s perhaps no bad thing. I was able to get a short dip almost as soon as we arrived. It was very shallow, but the water was far warmer than I’m used to. Unfortunately there was even more scare mongering about jellyfish….. we get enough in Portrush, but at Marble Hill there was talk of little else!! I pretty much ignored the chatter and enjoyed my time in the sea with no sightings. I commented to hubby when I came out that I hadn’t seen any of the offending beasties and that I’d wish people would shut up about them because it took away some of the enjoyment and relaxation…… I essentially implied it was a whole fuss over nothing…..

Later that evening we took a walk along the beach I’d swum at and GAH!! It seems they were there after all! Thankfully I mustn’t have bothered them, so they didn’t bother me either.

We spent the next few days exploring and enjoying the area. The beaches are stunning and I got my second dip further round Sheephaven Bay, at Downings. It was just as stunning as I remembered from last year, and we even managed to dodge the rain showers!

We carried on adventuring and shower dodging and had a lovely time to ourselves. Ards Friary was an unexpected treat. Such a shame the currents are too strong to allow swimming, but the views are spectacular and we had a wonderful walk.

Now we’re home. It was great to get a break but it’s always the best feeling to get back to our own home. The dog is delighted to have us home. Unfortunately we just missed big son, who’s away to a birthday party. Thankfully we then get a short time with him before he heads off to The Hague to study a Masters. So excited for him!! Tonight though I’m more excited about my own bed :)

I’m due a scan anytime now, but I’m expecting Covid delays. I wish they’d hurry up, not least because the warm weather brings veins up better, so the sooner they do it, the less likelihood of too much of the usual painful poking and prodding! 

Triciafest gig plans continue, with a scheduled date of 2nd October. We’ve got some very impressive raffle prizes as always, and the t-shirts pre-sale is going pretty well. Who’d have thunk I’d have my own Fest?? It still makes me cringe and laugh all at once, but the fact is that it brings in a lot of money for Macmillan Cancer Support in NI, and if I have to be a bit embarrassed then that’s a small price to pay.

We’re now exactly 1,651 days post grand mal seizure, and here I am. I generally feel well. Granted there are niggles, but I certainly don’t feel like what I’d have imagined a grade 3 cancer patient would feel like. I remain loved and supported, especially by a wonderful husband…..  I remain the luckiest unlucky girl in the world. 

Living with….

Plans, plans, plans

It’s been a long 18 months!! Covid restrictions began early last year and here in backward wee Northern Ireland, we’re still behind the curve with “freedom day” as Boris the Buffoon calls it! 

Maybe it’s no bad thing that we’re easing restrictions at a slower pace, though it’d be nice to know it was a deliberate act by a unified local Assembly, rather than simply because the folks on the hill still can’t agree on anything…..ever :( 

Either way, we remain a bit locked down, beautifully aided by all the fools who choose to ignore the science and risk us going into yet another tidal wave of infections. You know them…..the anti vaxxer, anti masker, ‘they’re tracking us’ brigade! The irony of their protestations is painful.

Regardless, we are easing out of lockdown and it’s great to finally see some light……..not to mention some long awaited fun times!! Between next month and the end of the year we have three short breaks planned. Donegal, Jersey and Edinburgh. All reschedules of reschedules and all anticipated with huge excitement. We need a break! Especially now, as the thermometers rise to levels Northern Irish people generally associate with active volcanoes in far off lands.

I keep forgetting this blog is supposed to be about my cancer journey, not politics, the weather, or sea swimming (though roll on Sunday morning!!) So where are we with that pesky tumour?? 

Nothing much to report really. I remain in a monitoring schedule. I was due a scan this month, but I’m expecting delays due to Covid. Such a shame not to make the most of the semi-decent veins I now have due to the heat! I can actually see a few that I think would work for the MRI contrast dye and that’s a very rare and precious sight, let me tell you.

Unfortunately my driving licence renewal was refused this year. Of course they don’t tell you why but I’m assuming it’s a arbitrary decision made on the basis that my Neurologist diagnosed me with epilepsy in October. This was time of very high stress for me due to a very close family member spiralling into dementia, combined with a crappy time at work.  I experienced a few very mild tingles, had my medication increased by a minimal amount (which, upon questioning, the Neurologist reassured me remained well within normal prescribing levels). I don’t believe he actually told me the diagnosis that he subsequently sent to my GP, and he definitely didn’t tell me not to drive. So after 10 months of merrily driving away, it came time to apply for my new annual medical licence, and it was declined. I only found out why by speaking to my GP. My Neurologist is yet to respond to my queries. Very annoying and horribly unfair particularly on my long suffering husband, who is back to being chief taxi driver and general sorter outer! Hopefully only for a short time though…….common sense would say I should be able to reapply successfully in October, when I will be another year seizure free. Sure what else do I have to do with my time other than listen to preprogrammed phone menus as I try to speak to someone who can help……or even just any real person!

If I could drive right now I reckon I’d be in the sea. Instead I’m lounging in my back room with the patio doors open, watching the birds devour the seed I just put out for them. Ach sure, it’s not a bad aul life really. Give it 2 months and hopefully I’ll be driving to this year’s Triciafest gig in aid of Macmillan in NI, while waxing lyrical about our trips to Donegal and Jersey!!

Know what that is?? Living with xx

Adventuring on!

Whilst I realise my cancer blog has now become a cancer and sea swimming blog, I cannot apologise for having to write about today’s adventure, because it was a really special one……

My sea swim buddy and I have been trying for a perfect boat trip for a number of years now. The first one we booked was a day trip from Portrush to Islay. I think it was four or five years ago. A huge storm rolled in and the trip was cancelled due to inclement weather. 

The second one was a whale and dolphin watching trip, three years ago. A huge storm rolled in but the trip went ahead, despite the inclement weather. The only thing I saw on that trip was my life flashing in front of my eyes as 10 foot high waves crashed over the top of the boat and soaked us to the skin. We adopted the brace position and held on tight. When we got back to dry land, nobody on the boat could walk! We were like a bunch of drunks stumbling around the harbour, trying to fix our sea legs!! We went into a yacht club for cups of tea and left two puddles of water on the floor when we left.

Today was our ‘third time lucky’ trip. A trip along the coast to Rathlin Island, with the potential for a quick swim under Carrick-a-Rede rope bridge. In celebration of my sea sister’s birthday. Thankfully her birthday luck was in!! We had a fantastic trip.

I’ll not lie, as the day got closer I was getting more and more nervous about the potential swim. Conditions were looking good.  I really wanted to swim, but it’s open water and swimming off a boat is very different to swimming from a beach. What if I couldn’t get out of the boat? More concerning, what if I couldn’t get back in?? 

I’m used to a slow walk in, my body acclimatising to the cold water as I go in deeper. I never go out of my depth. Today’s dip wasn’t like that. There was a lift on the back of the boat…….. My intrepid pal stepped onto the lift as I was still flaffing around getting myself organised. The skipper lowered the lift slightly and she jumped in. I watched in admiration whilst feeling the fear rise from my tummy. Could I do that?? 

I went over to the lift and stepped on. It was really just a square of metal grid flooring that lowers into the water. The skipper lowered me down a short distance. I knew I should jump but I couldn’t do it! I was trying to manoeuvre myself into a sitting position to allow a more gentle ‘plop’ into the water when the lift started moving lower, the skipper seeing my fear at the prospect of jumping and my ungainly attempts to try to make things easier. As the lift went down I felt like I was in a shark cage and knew I’d just have to go for it. With the water at thigh level I dropped in, with a shriek of seasteria, and swam round to my friend at the side of the boat. I shook off the feeling of being like shark bait and the momentary thought that my foot might get shredded by a propellor! I saw my pal’s face, full of delight and pride, and I reminded myself I could swim, the boat was right beside me, and I was safe. 

We were doing it!! We were swimming in open, very deep water in a great big ocean. We could see the cliffs and Carrick-a-Rede rope bridge! Sea birds were flying all around us and we knew there was a minke whale somewhere close by, probably watching us and wondering what all the fuss was about. It was amazing!! 

Another passenger decided she’d get in too. She hadn’t come prepared…..no swimsuit, no towel. She just felt the pull of the sea and leapt off the lift fully clothed in shorts and a t-shirt. She’s a total legend!! 

I wasn’t in for long and my entry and exit were hugely aided by the lift, but I DID IT!! I wasn’t elegant, I was slow to get in and out and I laughed like a nut job, but…….. I proper swam in proper deep open ocean and it felt fantastic!! Another leap forward. 

Cancer can’t stop me yet!! Living with…. xx

Childish joy

Today was a wonderful day. We are enjoying some well earned time off work so today I was able to get my second sea dip of the week. My wee sea swim pal and I decided to be bold and try going to large rock pools we’d long been curious about. 

Being the gentleman that he is, hubby played taxi and chief advisor. We reached the spot and tried to see a way in that hopefully wouldn’t involve falls, trips or slips! Thankfully there was a well worn path most of the way. We slowly and carefully crossed the grass and rocks until we were beside the pool we’d chosen for our dip. 

I was a bit excited but also nervous. The pool looked very inviting, but getting in would involve manoeuvring down a couple of ledges and then dropping into deep water. It was very different to the slow wade in I’m used to from a beach. Add to that, the thought of not being able to touch the bottom and the prospect of trying to get back out, and my nerves started to kick in a bit more.  

The sight of the calm, clear water was too inviting to allow anxiety to remain however, and determination started to kick in. I could do this, I knew I could. My wonderfully fearless friend went in first as always! She talked through each stage, giving me hints and tips. Hubby stood slightly higher up and also provided insights into the easiest route. Both were wonderfully supportive but neither rushed me or instructed me. Just helpful suggestions and tips.

I got myself sitting on the first ledge, with my feet and lower legs in the water. After a few minutes I lowered myself down onto the next ledge. I sat there for another few minutes, getting used to the water temperature. As always with the North Atlantic, it was cold, and I was conscious I usually get a much slower immersion.  

I didn’t sit for too long before I became buoyed by my buddy…….. she was straight in and swimming across the pool, to the rocky wall at the other side. I slowly followed her lead and eased myself into the water. It was cold but we’ve dipped in far worse. The water was deeper than we’re used to, with no chance of touching the bottom, but there were plenty of rocky grip points along the sides of the pool. 

I relaxed and was taken back to childhood……. a memory of swimming in a pool just like this one, only smaller. It was at the bottom of someone’s garden. I don’t know whose. My mum had passed away a short time before, so I would’ve been about 5 years old, and someone had taken my sister and I to a house that had a deep rock pool, just like this one, at the bottom of the back garden. I don’t remember who took us there, or where it was, but I do remember that pool somewhere in Scotland. Somewhat bizarrely, I also remember a girl of about 18 or 19 years of age, playing a keyboard in the house.

As I crossed the rock pool this morning I felt peace wash over me with each movement I took through the water.  With relative ease, I swam to the other side of the rock pool. As I reached it, my epic sea sister was climbing out and preparing for a jump back into the deep pool. I watched her and admired her courage. I wasn’t tempted to try it though: I didn’t think I’d be able to get out of the pool, never mind have the nerve to jump back in!!

We swam back to the other side and she was out and getting dressed by the time I’d very ungraciously hauled myself onto the lower ledge. Bum shuffling like a baby learning to crawl, I managed to get out of the pool. As I giggled and indulged in some self praise at my ability to achieve my goal, another small group of women appeared. The three of them had clearly done this before……….. they headed straight to the far end of the pool and easily walked down a slope and slowly entered the water. We laughed at our ability to pick the hardest route in and out of the rock pool, whilst continuing to praise ourselves for our strength! 

Today was a good day. A year ago I wouldn’t have had the strength or the confidence to get myself in and out of that pool, never mind swim across it and back again. Today I did so, safe in the knowledge that I had the ability and had a Support Team on hand should any disasters strike. It wasn’t pretty, but I did it! And more importantly, I thoroughly enjoyed it. I left that deep pool, full of daydreams of childhood and a confidence in how far I’ve come since that life changing grand mal seizure four and a half years ago. Life is good.

Living with…..