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