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…..

Adult supervision required

Once again this evening I’ve been reminded of what a hash I can be, and how lucky I am to have the husband I have! 

Tonight’s challenge should’ve been simple....... cook a meal using a recipe from a fairly easy cookbook. Teriyaki chicken. A delicious combo involving chicken fillets, fresh veg and a simple sauce. As usual, I started off strong.......that’s code for ‘I jumped in without really reading the instructions’. Hubby asked if I needed any help and, like the professional chef that I’m definitely not, I began issuing instructions..... I ask him to chop the chicken and then gave him a load of veg to cut up while I spent roughly the same length of time making up a sauce that involved measuring out some liquids and stirring in some crushed garlic and crushed ginger. 

“What about the scallions?”, hubby asks. “Aye add them in too”, I reply after very quickly scanning the recipe. He does as he is bid before glancing at the book and asking me “Honey, where does it say to chop the chicken??” I look at it and watch as his finger points to the photo, which clearly shows whole, cooked chicken fillets coated in a sauce and placed on a bed of roasted vegetables. Doh! I drop an f-bomb and slap my forehead. Hubby doesn’t flinch and says it’ll be grand. Then points to the sliced scallions used to garnish the meal. Double doh!! Again he laughs and tells me not to worry. 

From then on I’m the sous chef and hubby is the boss. It’s better for everyone that way. He takes a sneaky selfie which clearly shows his veg all neatly chopped and ready for the oven, as I furiously stir my ridiculously simple sauce! Posting it on social media, he captions it “ Cooking together with Yacht Rock!! Sundays!”..... What a wonderful man I’ve married, who resisted a truer caption of “adult supervision required”!!

The huge irony in this is that in the last six months I have become the main contact for my dear old dad, who has spiralled into Parkinsonian dementia and is now in residential care. My sister and I are joint Power of Attorney and she visits as often as she can, but with her living in England and me living just up the road, I deal with the day to day business.  There are visits and post and paying bills and all the other things that go along with helping someone with dementia, alongside work and trying not to overdo things.

As always, hubby is my adult supervisor!! He helps in every way he can and makes sure I don’t get myself tangled into a stressy mess!! He makes sure I take a breath, he takes me down to meet a wonderful friend for our weekly sea dip....... not because I can’t drive or need his help, simply because he knows I like to know he’s nearby. Most importantly he dries my tears and gives me hugs when I get a bit overwhelmed by being the whipping boy when daddy is having a bad day. My sister and dad's partner also jump in and visit when they can, which is invaluable for us as well as for dad. I’m quite sure he was getting sick of only seeing me once a week, every week, as per the Covid rules. I’m so relieved they’ve relaxed enough now to let him see other people and even get out for the odd short adventure! 

My husband. WHAT A GUY!! My hero, the love of my life. Keeping me sane every day :) 

It’s been a while, old friend

When I’m not telling my ‘Billy Joel saved my life’ story, I usually credit my Macmillan Nurse in Causeway Hospital with saving my life. It is undoubtedly true that he did, but it’s also important to acknowledge there were others who played huge roles along the way. 

My Macmillan Nurse saved my life when I was admitted to hospital due to phenytoin toxicity. This was a full year after my initial grand mal seizure and subsequent brain tumour diagnosis. I credit Billy Joel with saving me at this time too, partly because it’s true and partly because it makes a crackin’ true story!

So Macmillan and Billy Joel saved my life in 2018. But many others had already saved it the previous year when my brain tumour so suddenly and violently made its presence known. Along with my wonderful husband, who continues to save my life every day, my gorgeous grown up son, my amazing sister, and too many friends and colleagues to name, there were many medical professionals who will never be forgotten. 

The first Medical Consultant I came across was an amazing man I met upon my first admission to hospital, the night of my grand mal. He admitted me into his ward, setting me up in my own private side room, and ensuring I got the best of care from his incredible team. By the time I was admitted again a year later, he had retired. The rest of the team in ‘my’ ward remained much the same so I received the same loving care, but I often think about that gentleman who first took me into their care. 

Recently I have been thinking about him more and more. As Covid restrictions ease, we have been looking to the future. That future includes the official opening of our Riverbank Relatives Room in the hospital. We were all set to open it when Covid struck, causing us to put plans on hold. The room is in use and an event around opening is far less important, but it’ll be wonderful to have an official opening as a thank you to everyone who’s played a part in keeping me well, and all the wonderful friends who donated time, energy and their hard earned cash to make the project possible. 

So I have been thinking about that first Consultant who dealt with me. He wasn’t supposed to be on duty that night, but came in when he heard about my case. He kept me safe and I’ll always remember his professionalism, but even more so, his kindness. I had been hoping the hospital had contact details for him because it wouldn’t feel right opening the Riverbank Room without him there. 

You can imagine my surprise, and complete joy, when I was doing my supermarket shop this morning and saw my wonderful Consultant just ahead of me in an aisle! I approached him and he turned towards me. Despite our face masks, I could see the recognition light up his eyes. Initially he thought I was my sister and it became apparent he didn’t expect me to still be alive! He was visibly surprised and delighted and complimented me on looking so well. We had a brief chat and I was able to tell him about our Riverbank Room and how I’d been wondering how I could get hold of him to invite him to attend the opening when it happens. He gave me contact information and said he’d be delighted and honoured to attend.

I haven’t had one of those joyous, serendipitous moments for a while and it took me right back to the start of this crazy journey, when such serendipities seemed almost commonplace.

I managed to more or less hold back the tears until we got out of Sainsbury’s and thankfully hubby was there to give me a hug. 

Overwhelming yet wonderful. I’m simply overjoyed. The world is full of wonderful people and it seems they can’t get away from me!! 

Living with.... xx

The Wide World

Today I properly ventured out into the Wide World. For over a year now I’ve been working from home due to Covid restrictions. Truthfully, it has suited me pretty well. I like my job most of the time and have remained disciplined with my working hours and giving it my best. Home is quieter and I find it easier to concentrate. Fewer distractions. I think our dog is now fully trained in my job because I regularly discuss it with her.......”So Izzy, what do you think?? Should I do it like this or like this??”

I had just got to the point where I was starting to want to go back to the office. A year is a long time to work at home. The advantages are many, but I was starting to feel the pull off the Riverbank towards the Wide World......... Fortuitously, a piece of work came in that I couldn’t do from the laptop. I had no choice but to plan a day in the office. I picked today and was delighted when my wee Roomie told me she was going in today too. Perfectly perfect :)

I work 0730-1630, 4 days a week. Going into the office meant getting up 15 minutes earlier than usual to allow for travel........my office is about a mile away, but the one way system trebles the distance and the roads are all residential or town centre, so 30mph and plenty of roundabouts and traffic lights! I didn’t mind the slightly earlier start, I was looking forward to getting into the office, mixing with colleagues, and hearing all the craic! I also found myself feeling nervous. It had been a long time. I packed up my wee backpack handbag, made my packed lunch, took my wee roomie’s Christmas present under my arm (!), and headed out the door like a kid on their first day of school!

I arrived happy to be there, if a little apprehensive, and I managed to successfully combine a few short chats with colleagues (always a feat for me to keep a conversation short!!) with a days work.  It was quiet, with not too many about, but was all going well. Wearing a mask was rubbish, but I know it’s still necessary. I enjoyed being back in my office with my pal, even though she’s now my manager lol!! 

All good. I worked hard and finished the report I had hoped I would. I was packing up about 10 minutes after my finish time but that was fine. Wee rucksack packed up, lunchbag in hand, along with a reciprocal Christmas present from wee Roomie :) All set.........

Keys........keys.........KEYS?????  Where are my keys???? Seriously, WHERE ARE MY KEYS???? Panic started to build as I realised I had absolutely no recollection of where I’d put them. The search began.......Pockets? No. Backpack? No. Desk? No. Under desk? Nope. Office floor? No. In fridge? No. Lunchbag? No. Christmas present bag? Nope. By this time my heart is starting to pound. Where were they?? In the car? Or dropped walking from car to office? Steps retraced.......car locked, no keys inside. No keys in corridor or in car park. WHERE ARE MY DAMNED KEYS??? I go to other offices to see if anyone has found them or if someone is playing a joke on me......no luck. I expand my search area.......... bins, corridors I hadn’t even walked down today, even down the toilet (could they have fallen out of my pocket?? Would they have flushed away?? Surely I would’ve heard them??) 

Full blown panic now. I find myself moving at speed upstairs to the management corridor. I interrupt a meeting between a senior manager and someone I’ve never met and ask if anyone has handed in keys. The answer is no, but the manager tells me he’ll arrange for someone to take me home and he’ll get whoever’s left in the building to start a search..... I’m mortified, and in a total panic. My voice has risen by two octaves and words are spilling out of my mouth in the muddled and frantic manner of a crazy person. 

I head back downstairs to continue my search while waiting for the boss to finish his meeting and call in the troops. I reach my office (having rechecked every possible ‘lost key hiding place’ along the way), and had a eureka moment.......wee Roomie!! She must’ve lifted them by mistake! I rang her, spewing out half formed words, and feeling like my heart might burst out of my chest. She tells me she definitely doesn’t have them. I feel my head start to pound. Then she says “Are they in your coat pocket?” I told her “I didn’t have a coat” (I had on a light, knitted hooded top over a t-shirt). As my eyes scanned the office and fixed on something, I heard her say “Your coat was hanging up when I came in”. I realise I’m looking at a coat. My coat. I’d forgotten I’d worn it because it had been raining this morning. 

I grab the coat off the wall hook and feel the lump of my keys in the pocket. By now I’m half laughing at how stupid I’d been, and half crying with both embarrassment and relief! I say goodbye to my friend, wee genius that she is, and head back upstairs to tell the boss to call off the search. My voice has possibly gone up another octave and I’m talking so fast behind my mask I’m sure I sounded like I simply wasn’t fit to function in the outside world! I can almost hear him thinking that the wee brain tumour girl has finally lost the plot after working at home for too long. I made good my escape and left work. I sat in my car in the car park for a few minutes, making sure I was ok to drive. Deep breaths, music on, slow drive home. 

Wee Roomie rang to check up on me and I laughed with my son about what had happened. He told me he’s left his coat at work loads of times because he’d forgotten he’d worn it, and showed me a funny video to further settle me down. Hubby came home and we caught up on each other’s day before having dinner. Since that we’ve eaten, done the dishes, watched the news and I’ve written this blog entry.

Now I’m for bed. I’m exhausted. Thankfully, despite still being a bit embarrassed, I can see the humour, and know it could’ve happened to anyone. My crazy reaction has left me with a headache, but I know all I need now is a good book, an early night and a good night’s sleep.

I guess I’ve still a bit of work to do to ensure I don’t spiral when things go a bit wrong, but what can I say? I’m still a work in progress. Most importantly, I’m still living with.... xx

Time flies.....

Time flies........ especially when you’re enjoying a week off work! Where did the week go?? It seems to have disappeared in a flash! I shouldn’t really complain though.... I’ve had a lovely week with hubby. We’ve had long walks, a bit of gardening and plenty of laughs together. I’ve even managed two sea dips, with a third planned for tomorrow :)

I remain hopeful about plans for later in the year, but if they fall through because of Covid restrictions then hey ho. Nothing we can do, just graciously accept the refunds and give the savings a wee boost ahead of 2022!! Gigs will return and our trips are all refundable or moveable - Jersey, Edinburgh and Manchester will all still be there after Covid calms down. I don’t have much desire to travel further afield anymore......I remain fearful of the impact a long haul flight might have on my brain! It took an invitation from Queen Elizabeth herself to get me on my first short, post diagnosis plane journey!!

 Next year we are hoping for a trip slightly further away...... we’ll be married 25 years in January, and are hoping to celebrate Silver with a trip to Venice......fulfilling a long held dream to visit Italy. If we can’t go there I’d settle for another trip to beautiful Donegal....or Cork looks beautiful too. Not to mention the Wicklow Mountains and the lavender fields in Wexford. Plenty of staycation opportunities if we can’t go abroad. As ever, I am reminded of the fantastic landscape we have on our doorstep. I maintain we are lucky enough to live on one of the most beautiful places on our wee planet. A trip to Venice would be special, but so long as I have my big man for company then a car picnic and long walk at White Park Bay would do grand! 

Stay safe. Wash you hands. Get your vaccine. Don’t be selfish. Appreciate what you have. Get outside and enjoy our wee country! Live with the hand you’re dealt and don’t waste time, because it flies by...... Xx

What are you waiting for??

What are you waiting for?? An easy question to ask, but one that sometimes has many answers. As I sit here, watching Duran Duran live in concert on tv (don’t judge me, I was reared in the ‘80s lol), looking out on a rainy Mother’s Day, what am I waiting for??

• I’m waiting for it to stop raining.
• I’m waiting for Mr Blackbird to come and tap on our patio doors with his lovely orange beak......he’s done it a few times recently when the seed is running low. How cool is that??
• I’m waiting for the massive swell in the sea to go down so I can go for my sea swim.........tomorrow’s looking hopeful.
• I’m waiting to get a date for my second Covid vaccine.
• I’m waiting for the hot water to heat so I can have a nice deep bubble bath.

Most of all I’m waiting for lockdown to end, once and for all, because;

• I’m waiting to see if I get to dance my wee socks off to Lionel Ritchie live in Belfast in June.
• I’m waiting to see if I finally get to see Green Day live in Dublin in June, after two opportunities stolen from me by cancer.
• I’m waiting to see if I get to see Crowded House live in Manchester in July. After my very vivid dream about my conversation with their lead singer, Neil Finn (see earlier blog post for more detail on that one!)
• I’m waiting to see if we get to go to Jersey for the first time.
• I’m waiting to see if we get to go to Edinburgh for the first time in ages, after 2 reschedules so far.
• I’m waiting to see if our Triciafest rock gig in aid of  Macmillan in NI goes ahead and we finally get to officially open our Riverbank Relatives Room.

I don’t wait well, but we all know ‘The Waiting is the Hardest Part’. Wait, wait, wait. Tap, tap, tap!! Come on virus, let Spring in!! 

Four years gone

This time four years ago I was getting myself ready for brain surgery. That still sounds mad to me! Almost unbelievable. My first surgery was on 22nd February 2017, and my second one was a week later on 1st March....... I saw a video this week of a woman playing violin during awake brain surgery. All I managed were some very poor jokes.......

Hand me the forceps; “What are you doing up there?? You’re not delivering a baby you know!!”, 

 “Do you know what day it is today?? It’s 1st March, the first day of Brain Tumour Awareness month. Don’t f*ck this up.....it’d be really embarrassing for you!!”,

“Just so we’re clear, if I die on this table I’m coming back to haunt you!”

All I have to do is touch my head to be reminded it wasn’t all a bad dream......there’s a scar and a temple fontanelle to remind me. The weather reminds me too...... we’ve just had a complete downpour and accompanying thunder and lightning so powerful it knocked the Sky TV signal off. Hubby was very unhappy because the Merseyside derby is on! I’m unhappy because my head is still thumping. Human barometer.

Thankfully there was no rain for my sea dip this morning. Though it’s still very, very cold in the water! I wrote that like it’s ever warm in the North Atlantic.......it’s not, but there’s definitely ‘winter cold’ and ‘summer cold’, and we’re still in the former. Not for long though...... Spring is just around the corner. Some of my snowdrops have come out in our garden, and there are tulip shoots just waiting for the season to properly change. It’ll be Spring no time!

The longer days seem to be lifting everyone. In the last week I’ve had loads of really pleasant conversations and experiences. I’ve been busy at work, which is always good for me. I’ve started playing piano again after 30 years......it’s halting and there are plenty of bum notes, but it’s coming on. A wonderful lady I met when her mother was in the same hospital ward as me created a series of beautiful images inspired by sea bathers. “My” image is called Stormbusting and she made me cry with her words;

“....brave, tenacious, enduring, inspirational...”, “the long mermaid hair symbolises the inner rock chick being restored. The wave symbolises everything you endured and are still going through.....”

Wow! What could I even say? Completely overwhelming. 

Hot on the heels of this I had someone tell me I was ‘a tonic’. I took this as a wonderful compliment. It’s not an expression you hear much, but I’d just rattled off my ‘Billy Joel saved my life’ story along with a few other comedy lines. It’s always nice to have my, sometimes dark, humour appreciated.

We are fast racing towards Spring. I have snowdrops in bloom in my garden and tulips starting to sprout. Before we know it Covid restrictions will start to ease and we’ll be all be in a better place! 

We have rescheduled gigs to attend and trips to go on. Please, please let us get a break by summer!! Even if it means handing back the laptop, getting out of the jogging bottoms and going back out into the Wide World.  I’m restless. I crave the sun, music, good friends, and seeing our Riverbank Relatives Room finally opening! I am filled with hope and expectation. Come on life.......don’t let me down!! 

Washing worries away

Let’s get the bad stuff over with first.......Sometimes real life sucks. This seems to be particularly true for me at the start of the year. January and February should be about fresh starts and looking forward to an exciting year ahead....... for me, it seems to have become the time when bad things happen. 

It’s been a very full on few weeks. I’ve had a ‘half scan’ due to my rubbish veins and am nervously awaiting results, knowing they won’t be conclusive anyway. I’ve moved into a new role at work, through my own choice, but another change to deal with all the same. Hardest of all, I’ve watched my dad tumble very rapidly into dementia and have had to accept he will spend the rest of his life in a dementia unit in a care home. This is particularly difficult because he has dementia with Lewy bodies which, unlike Alzheimer’s, is not a steady decline; rather a fluctuating state of semi lucidity and complete delusion within a short space of time. 

It’s been tough going, made worse by the time of year and the ongoing covid pandemic, but I know people experience far worse. I always aim to be honest in this wee blog of nonsense......I don’t want to come across as an eternally happy and positive person, because that’s just not real life for anyone. What I do always try to do is pull out positives....... I do this to let the few of you still reading this see there are always positives to be seen. More so, I do it to remind myself and to chase my anxieties away.

So here’s the story told from a different perspective......... In the last few weeks I’ve had a scan that should show enough to tell us if everything remains stable, which I’m expecting to be the case. It’s winter, but we’ve had some glorious crisp and sunny days and been able to enjoy restorative time outdoors, despite the pandemic. Just this morning I enjoyed a life affirming sea dip. 

I’ve moved into a new, exciting role at work. It was through my own choice and gives me an opportunity to learn new things, work as part of a bigger team, and hopefully make a tiny difference in my wee patch. Hopefully some time this year I’ll get back into my office and out of my house. I’ve been home working for almost a year now........aren’t I lucky?? Neither my husband or  I have been furloughed, we haven’t lost our jobs, we have interesting and secure jobs that pay us enough to pay our bills and live a good life. We’re not rich but we’re certainly not on the bread line. Most of all we have each other, not to mention our gorgeous big son.

My dad is safe, warm and comfortable in a care home specially set up to look after dementia patients. I even got to choose his room and this week we will take him some items from home and get him settled in. He is close by and we can visit him with restrictions. Once lockdown rules change we’ll be able to have full visits more often. Some people don’t get that valuable time. 

I have just come back from a fantastic dip in a very cold, but glorious sea, under blue skies, and have left my worries in the sea. I have been spoilt with a hot shower, a bacon sandwich and a cup of tea, and am now watching my husband do the housework while I write a load of uninteresting words that will likely never be read, but that help me work through my thoughts.

Yep, I’ve nothing to complain about really. Living with x

A vein attempt.....

They tried in vain to get a vein....... 

It’s been a fairly crap week if I’m honest. On Monday, my sister and I had the unenviable task of seeing our dad go into a care home. He has Parkinson’s Disease and associated dementia and has reached a point where he needs a higher level of care than family can provide. It’s hoped the full care home is a short term stay until he can get into an assisted living facility. Unfortunately Covid has led to admissions in his preferred facility being put on hold for a while. 

The rest of the week saw a challenge at work. A problem not suitable for sharing in a public blog, suffice to say we all sometimes have to deal with difficult people in our workplaces! It was finally resolved on Thursday, by which time I’d pretty much stopped caring anyway, mainly because I was dealing with bigger worries with my dad’s situation and my four year seizureversary. 

My rubbish week finished of perfectly today with an MRI scan. Hubby couldn’t go into the hospital with me due to Covid restrictions, so he waited in the car. He waited while I had it confirmed that Infusion Services hadn’t been booked, despite me checking beforehand on two separate occasions. He waited while three different nurses tried valiantly to cannulate a vein......any vein, in vain. He waited while Infusion Services finally arrived and took over searching for a vein, unfortunately again in vain :(

He waited when everybody admitted defeat and agreed there was no vein to be found today. He waited in the car as I waited in a hospital cubicle because the radiographers had had to take other patients ahead of me. We both waited on our own as my stupid veins held everybody up in an already very busy department. 

He waited while I finally had my scan, albeit not the full thing because no vein means no contrast dye. They still get images but they don’t have the same detail as they can get with the dye.

My poor husband, who in two days time will have put up with me for 24 years of marriage, waited alone in a car in a hospital multi storey car park for FOUR hours! When I rang to say I was finished he told me to wait inside so I didn’t get cold, and came down to greet me with a hug and words of reassurance and comfort. He put his arm around me and took me back to the car before bringing me home via a motorway services Burger King because we were both starving!! He brought me home, ordered me into my pyjamas and fleecy dressing gown, and has been spoiling me ever since.

Bad veins are nobodies fault. Years of treatment are hard on a body. Thankfully I have years of marriage to a wonderful man to keep me strong. We’ll get the scan results in a few weeks time. I don’t expect them to show any changes. If they do appear to show a change then no doubt we’ll have to go through another vein attempt that hopefully won’t be in vain again. 

As Bob Marley said;

“Live for yourself and you’ll live in vain, live for others and you will live again.”

My husband is a man who will definitely live again. Xx