When the going gets tough, the tough go sea swimming!

“I’m alive and I can feel the blood shiver in my bones”

from Ghosts by Bruce Springsteen

It’s been a challenging few weeks. Nothing that is unique to me as a cancer patient, rather just ‘real world stuff’........ an ageing family member and all the associated difficulties in trying to do the right things, for the right reasons, at the right times, being the main focus of my energy. ‘Normal’ stresses of everyday life, experienced by people the world over.

Unfortunately my coping ability for any stresses, even for those of an every day nature, can sometimes leave a little to be desired since my diagnosis. At my routine Neurology appointment on Thursday I felt compelled (not least because hubby had made me promise!) to admit to a couple of minor ‘wobbles’. My friend refers to them as ‘mini mals’ and that seems like a very apt description........ not a full seizure and nothing too dramatic, but a definite tingling, numbness and weakness down my left arm and a facial ‘pull’ where the left hand side of my mouth is visibly pulled down, like someone has threaded a string through the corner of my lip and is pulling it taut.  I’ve only had two or three in total, lasting just a few minutes each, and have always recovered quickly after sitting down and doing some deep breathing exercises. Regardless, an increase in medication was strongly advised. I accepted it, despite some reservations.......previous experience of phenytoin toxicity will make a girl naturally and rightly cautious, and I was never a big fan of taking any sort medication to begin with! So the anti seizure medication has increased a tiny bit.

Disappointing and a little confusing, given my excellent scan results. My neurologist explained that stress and tiredness are amongst the biggest triggers for adverse neurological issues. I asked was it not better to learn to deal with stress rather than increasing meds?  He agreed but told me sometimes life throws challenges that anyone would struggle with and the increase in medication is just an extra safeguard. I also asked him why I was still having the occasional weird thing happen when my scans looked clear. He explained the cancer and treatment all leave scarring. That makes sense I guess.... who hasn’t had an injury that heals but leaves a slight weakness? Very few of us I’d suggest. So I accepted the extra precaution due to its minimal nature, and so far haven’t felt any negative impacts. 

At the same time I’ve paid particular attention to looking after my own wellbeing, with help from hubby and a couple of very dear friends. There have been a few long phone calls,  a few even longer walks, a bit of being spoiled at home, and a couple of delicious sea dips.......

On Wednesday hubby and I returned to the scene of the crime...... A lovely blustery walk on Downhill beach, followed by a walk around Mussenden Temple.......the area I spent the afternoon walking in before my initial grand mal seizure three and a half years ago. 

Yesterday we walked in our local forest....... my childhood playground (despite not being allowed to go there on my own as a child.....yeah right! How to encourage a child to something they shouldn’t? Simple, just tell them not to do it!!) 

This morning, after deciding earlier in the week that the weather didn’t look suitable for a sea dip, my wee pal and I spontaneously decided to go anyway to check conditions with our own eyes...... we were side by side half an hour later, looking out at a choppy but manageable sea.  

It was a quick dip, not much more than 10 minutes, but one which left us giggling like two schoolgirls. The laughing started when seaweed kept getting tangled around our legs and my mate lifted a bit out of the water that was like a small tree!! The laughter became louder after a total wipeout by a particularly big wave! Please note, we never take chances in high seas........we never go out of our depth and are particularly wary of any undertow (or ‘sucky sea’ as we like to call it!) A sea slap or even a good dunking can be great fun as long as you make sure you always have someone with you, know what you’re doing,  and are strong enough to get yourself back up.

As ever, my buddy was quick to try to help me as she saw me get dunked by a tall wave that broke right on top of us..... never one to be put off by the fact that’s she’s 5 inches or more shorter than me, she made a grab for me as I was given a good, hard sea slap!! In carrying out this act of heroism, she managed to grab my left boob fairly hard! After 25 years of friendship this did nothing but make us roar with laughter even more! I’m still giggling now, thinking about our antics, despite the slightly achy boob and scrape on my thigh lol.

So after a few rough weeks, a stormy sea has completed my healing process. I’ll keep taking the tablets, but I’ll also keep heeding the advise of the great life coach, Dory, and  ‘just keep swimming’!!

Living with xx

Side effects; the pros and cons

Cancer has brought a lot of side effects; some negative, some positive.

On the negative side:

• My feet. My poor feet. They’ve just never been the same again. I suspect the blame lies with the extreme and super fast steroid weight gain. I have old woman feet :( Recurring ingrown big toenails, hard skin, sporadic pains and random swelling. Thankfully no hairy toes so I’m not a complete hobbit just yet!!
• Tinnitus. Sometimes it’s like an airplane is coming in to land. Sometimes it’s a feeling of ‘fullness’. Sometimes it’s just a mild ache. 
• Joint aches. Again I blame the fast steroid weight gain and lack of energy to exercise. Pain is particularly associated with places where I had previous injury...... the shoulder I had surgery on for a bone spur, my coccyx that I remain convinced I chipped after bouncing off an enamel toilet whilst passing out from heatstroke in Thailand. Other joints just aren’t as flexible as they used to be but this is gradually improving through time and effort. I won’t be doing squats anytime soon, but I can get myself up off the floor, with much effort and in a very undignified manner...... as was proven when I had to get onto the floor in my retired boss’s office to reboot the computer. There is no panic like the panic you feel when you think you’re stuck sitting on the floor of a senior person’s office...... and there’s a window in the door that looks out into a busy corridor! I had to shout on his PS to come in to help me, but managed to get myself up as she stood ready to catch me if my jelly knees decided to give up!! As someone once told me when I slipped on ice many years ago, “Pride fairly get you up, girl!” True.
• Hormonal shifts. This isn’t really one for public consumption! Suffice to say my treatment (and probably my age) led to an early menopause that has not been a joyful experience!
• The apparent inability (or perhaps it’s motivation) to shift that last stone....
• Inability to deal with stressful situations. I am quick to tears and it’s not unusual to find me deep breathing my way through anxiety. Cancer, treatment or hormones?? Take your pick!!
• An insane fear of heights. I never liked them, but now I find myself frozen with fear on the balcony of the Ulster Hall, almost falling over whilst trying to avoid stairs that are 2 meters away, and almost crying when watching hubby get ‘too close’ to a cliff edge (again around 2 meters is too close!)

Whinge whinge, gurn gurn. Let’s look at the positives!

• I know who I can depend on. My inner circle is smaller than it used to be, but it’s tight. I know who genuinely cares and who I can rely upon.
• I don’t get drawn into negativity as often and, when I do, I’m quicker to pull myself out of it. I can forgive and forget more easily because I understand how detrimental to health bad feeling is. I can also walk away from people who I know are bad for my wellbeing. 
• I’ve learnt to appreciate the small things more. The sea; how exhilarating it feels to swim in it, how good it feels to deeply breathe in the sea air, how calming the sound and sight of the waves are, how beautiful the landscape and wildlife of a beach are. The forest; how the air smells, how the trees and plants grow wild, how the birds sing, how the squirrels jump from tree to tree. 
• I’ve learnt how to find humour in pretty much anything. Sometimes it can be dark humour, but whatever gets you by, eh? I spend a lot of time sharing laughs and I hope I help brighten the days of others the way they do mine. 
• I’ve learnt how to truly love and appreciate others. I generally hate to be alone and being around the right people can change my entire day.
• I’ve learnt I am strong in my own way. I’m not a quitter.
• I don’t care as much about that extra stone. My BMI is in the green zone, in grand sure ;) !
• I’ve seen how my body can heal if treated with respect and care.
• I might be terrified by heights, but I’m nowhere near as scared of spiders and other beasties as I used to be!
• I no longer get motion sickness. Brain surgery has stopped me throwing up on anything faster than a skateboard....who knew, right?? No more lay-by chucking up, no more hanging over the sides of boats.  I might even be able to travel by helicopter some time in the future...... without spending the entire (very expensive) trip filling up sick bags when I should’ve been looking at the Grand Canyon!! 

Cancer is hard. The treatment is possibly even harder. But it’s essential if you want to give yourself the best chance of winning. 

Stay healthy, stay strong. Look after yourself, physically and mentally. Don’t be an a-hole; wear a mask, socially distance; protect others even if you feel invincible yourself.

Living with.... xx

Stunning Staycationing

2020 has become the year of the staycation because of the Covid-19 pandemic. At first this felt very restrictive but we, like many, have found a good staycation can be as relaxing as any foreign holiday, if not more so!

We have just had two blissful nights in beautiful Donegal. Not having to pack everything into a tiny bag/case.......fill the car with clothes, coats and footwear for every eventuality.......... end up wearing shorts and t-shirts for the whole trip due to the beautiful weather. No hanging around waiting for flights, just turn the key in our ignition, make sure the tank is full, and off we go. No worries about things to do, just look around. No worries about speaking the language, just give a smile if you can’t understand what they’re saying. No worries about being welcomed by the locals, you’ll be family as soon as you arrive. 

Our car was filled with a ridiculous amount of clothing, camping chairs, swimming costumes/shorts and towels, cool bag with picnic lunch, and off we went. We were staying in Downings but weren’t in any rush to get there so deliberately overshot it to first visit Bunbeg and Bad Eddie’s Boat. Wow!

Picnic lunch and then along the coast, stopping in Portnablagh and anywhere else that took our fancy! We arrived at our hotel that evening. 

Honestly, calling it the Beach Hotel was a stretch...... there is a beach, but the hotel is right on the main road, with a view at the front of houses set on a hillside (we could see right into a number of living rooms from our room!) At the back there is a beautiful beach but in between it and the hotel is unfortunately a large caravan park! It’s only a three storey building so any hope of a sea view was ambitious. The bed was like sleeping on a slab of concrete, but the beach was only a short meander through the caravan park and it was outstanding.

The next morning we went down for a swim. What a treat! Hubby described it as looking like a Canadian lake. The tide was quite low so it took ages to get submerged, but when we did........ absolutely glorious. Cool water but definitely not what I would describe as ‘cold’, millpond calm and crystal clear, surrounded by mountains and with the sun on our faces. 

After showers and breakfast we were off adventuring again. This time we were looking for the Murder Hole Beach. Described as ‘secret and mysterious’, we had been told by locals that it was a 15 -20 minute trek across fields...... but “the farmer doesn’t mind and the bull is friendly”!! We were told it was well worth the effort. It was. And it wasn’t nearly as much effort as we’d been led to believe! The hardest part was scrambling back up a sand dune to get out.......and avoiding the cow pats!! We were lucky enough to arrive at low tide so were able to walk the two beaches that join together, resulting in a breathtaking space. Unfortunately it’s not safe for swimming but the sea was peacock blue and the waves breaking over the rocks just made it more beautiful.

Donegal, we love you. Next time we will stay longer and travel further. Staycationing ain’t no hardship when you live here!!

Living with......and loving life xx

Days like this

“When it’s not always raining, there’ll be days like this”

Van Morrison

We have had the most beautiful weather the past few days. It makes me really appreciate living so close to the coast in such a beautiful part of the world. 

I took Tues - Fri off work last week. A break was needed, but there was also some serious family business to attend to. It was a fairly heavy and serious week but we managed to finish it off with some relaxation time.

After a 6am sunrise swim yesterday morning, and a day spent by the sea with family and a dear friend, this morning was about more practical things. Back to work on Monday so washing, a supermarket shop and a few other messages to be done. Somewhat frustratingly the neighbours behind us decided to cut their fir trees, scattering cuttings into our garden. It happens every year and we usually (quite childishly, I know) throw the cuttings back over the fence into his garden to make a point! This year I decided to be bolder....... When we finished doing up our garden a few weeks ago we put up some solar lights. My husband fixed the wee solar panel bit to the top of the fence. The neighbour came and asked him to move it which he duly did, without fuss. Today as the ‘firnado’ came scattering into one of our lovingly made and planted new flowerbeds, I went out and made my presence known, with the full intention of asking him to come round and tidy up when he was finished! He saw me and said he’d be finished shortly and just to fire any cuttings back over into his garden. I softened a bit and laughed, saying “Sure that’s what we do every other year!” He commented that the garden looked lovely and I softened a bit more, jokingly telling him he’d better not wreck it with his cuttings! Unfortunately this year was worse than ever and one of our lovely wee beds was filled with wee snips of fir tree. We tidied it up as best we could but it was like trying to lift dandelion clocks that had been blown into the wind by an excited child.....scattered everywhere. We could’ve done it all day and still found more. 

In the end up it got too warm and we decided to walk the dog and go on an adventure. We packed a picnic and headed off for a cliff top path overlooking the sea. No point trying to get close to the beach today.......covid-19 has forced people to appreciate what’s on their doorsteps, and indeed on other people’s doorsteps, and the North Coast is rammed!! 

Thankfully, being local, we found a quieter place. There were still plenty of people about, but we were able to find a grassy spot of relative peace, right beside the sea. As we ate our picnic, we looked at all the different rock pools in front of us and pondered which ones might be suitable for swimming in. As we did so two girls came down to our wee patch of heaven. They headed off across the rocks to a pool we’d been admiring. We watched enviously as they put down their bags, stripped off their clothes to reveal their swimsuits, and tentatively entered the water. I wished so much that I had had mine with me! We even briefly considered going for a dip in our underwear but decided there were too many people, particularly families, on the path above.......don’t want to scare the children lol!! 

When they got out we waited for them to come back past us so I could ask about the safety and ease of getting in and out of the pool. They both confirmed it was easy enough and, as we chatted on, it transpired that one of the girls is in remission following cancer treatment. We compared a few notes and both extolled the benefits of the sea air and sea dipping. It was wonderful to meet a stranger who completely understood and agreed with my assertion that it’s curative in so many ways. Serendipity strikes yet again! 

The past few days have confirmed a few things for me;

• I live in one of the most beautiful places on earth and on days like this there is nowhere else I’d rather be.
• My husband is the best ever. He even got up at 5.15am yesterday to sunrise dip with me because my Sea Sister is away in her motor home.
• The sea can cure all ills. There is nothing in this world to compare to time beside, and preferably in, it. Especially when your favourite people are with you.

We all needs days like this :) xx

Sunrise swimming

Today was a very special day. Today I had my first ever sunrise sea swim. My dear friend asked me to join her and I could think of no good reason why I shouldn’t give it a go. Not much point banging on about self healing and living life to the fullest if I’m going to let opportunities to enjoy positive experiences pass me by!

I was up at 5am. Sounds early but I used to be up at 5.15 to go to work in Belfast every week day and we get up just after 6 for work 4 days a week now, so it was no massive hardship. 

Boy was it worth it! I was collected by one of my best ever friends and her husband. We reached The Arcadia in Portrush by 05.30 and looked out across a beautiful glassy sea. The moon was high in the sky but on the horizon we could see faintly brighter sky.

My friend’s husband took off on his paddle board and the wee doll and I left our stuff on the beach and began to wade into the water. It took a while for it to get deep enough to properly submerge but when we did......... bliss!

The water was cold but not freezing. Just cold enough to be invigorating. The waves were small and far apart..... no sea slaps, just silky smooth ripples of crystal clear, calm ocean. 

As we bobbed about, slowly stretching out our limbs and feeling any previously felt aches being washed away we saw an unmistakable orange glow in the distance. Sunrise. What a sight! It climbed up slowly, and we had to turn away at times because it was so bright. We would face out to sea and feel the sun on our faces and then turn towards shore, waiting for the spots in our vision to clear so we could gaze at the picture perfect moon sitting high over the buildings.

I felt so relaxed and happy. Any worries washed away with the water. As I watched the sun rise and felt the cool water all around me with my dear friend of more years than I care to count beside me, all was right with the world.

Xx

The miracle

I often joke about getting myself a t-shirt saying “I’m not saying I’m going to be a miracle, but I haven’t ruled it out!” Yesterday I got a letter that made me wish I had! And today I could’ve got another one saying “See? I told you!!” 

The post-scan letter from my Oncologist is something I  dread yet love to receive. It’s terrifying but it brings news and takes away the ‘not knowing’. In reality, I’ve had great results since I had my surgeries and completed my treatment almost three years ago. Each MRI has shown improvement on the previous one. So really the ‘letter dread’ is unnecessary, but there’s a constant ‘what if’ shadow hanging over all cancer patients.

Yesterday I got my scan letter. I wasn’t expecting bad news because all my results have been good and I feel stronger now than I have done since the start. Still I opened it with held breath and shaky hands. I still can’t quite get my head around what I read. It’s partially why I’m writing this, because writing this blog helps me make sense of my feelings and understand what’s going on. It doesn’t matter what I’m trying to process, writing always seems to help. 

So here goes....... Here are my latest scan results .....*drumroll*

“I am again pleased to say that everything looks very stable and very quiet. There is no sign of a return of your previous brain tumour. This is very reassuring.”

There is no sign of my incurable, terminal brain tumour and no sign of a return?? This is very reassuring indeed!! Quite possibly the most reassuring thing I’ve ever heard in my life!! 

I understand the Oncologist has to be careful because the statistics would show a very high likelihood of it returning. Like all good horror films, sometimes they come back, but my typically optimistic reading of that letter tells me only one thing that I’m prepared to listen to at the moment.......... 

IT’S GONE!!!! 

I wanted to end this blog post with a suitably poignant quote or song lyric, but I have to be honest and say the only one that’s been embedded in my head for the last two days is completely cheesy and not even slightly clever. Oh well, nothing else for it........

“Don’t stop believing!!”

Journey

Living with?? Not at the moment!! Xx

Buddy Holly

My dad has never been “cool”........ he’s a big dote of a man and has a heart of gold, but “cool” isn’t a word you’d ever really use to describe him.

Dad was raised in a wealthy family in Scotland and went to boarding school from a very young age. A very posh, private boarding school that has been open since 1525. A glance at some of the school’s alumni reveals an impressive list of names; politicians, business people, sports stars, actors, authors, historians, archaeologists, zoologists and screenwriters..... to name but a few! It’s clear my father’s parents wanted to give their children opportunities and expected them to be high achievers. 

My father took this very much to heart and, to this day, he always seems to wish he had done more, had ‘been’ more. In reality he raised my stepsister, sister and I in a house where we wanted for nothing.........apart from maybe more time with him. He was always working. When I was a teenager he was Managing Director of a large factory and President of the local rugby club. 

Like many teenagers I rebelled. I rebelled hard. I rebelled against the life I was privileged enough to have. I didn’t want a nice house, an annual foreign holiday and to help serve drinks at dinner parties. I wanted to live in Portstewart or Portrush, get the bus home from school, hang out at the amusements all night with older friends who smoked and drank alcohol. 

My rebellion was aided greatly by one, very important thing........ rock and heavy metal music. What better way to rebel against parents I saw as being stuffy than to blast some Metallica when they had visitors and shock everyone by coming downstairs in ripped jeans, DM boots and hair dyed a completely unnatural colour?? Perfect. 

The reality of that teenage rebellion is that while the rich kids were at a local ‘cool’ nightclub doing drugs and getting into fights, I was at a tiny local rock club where everyone knew everyone else, with people who were really only interested in hearing a live band. To this day I still find myself standing beside some of those people at gigs and those same teenage rebels have helped me raise thousands for Macmillan Cancer Support. We’re all older, have families of our own and are generally decent, normal people. 

So while my dad was listening to Holtz and Prokovief (ask me to hum Peter’s Theme from Peter & the Wolf and I’ll prove my background.....), I was blasting Megadeth and Slayer.  As the years went on I expanded my music knowledge and have grown to love a wide range of music and artists. For me genre doesn’t really matter; if it sounds good to my ears then that’s good enough!

So no, I’ve never really seen my dad as ‘cool’. A good man, a man with a great sense of humour, a man who worked hard all his life to provide for his family, a man who’s come through some hard times emotionally and a man who loves me very much and is always there for me. But not a ‘cool’ man.

So finally, after far too many words as usual, I reach the point where I tell you of the few minutes last night when my dad became ‘cool’......... I was taking him to the airport to collect a friend of his. As always, we arrived early, and parked a few miles away to avoid extortionate car parking charges. I decided to put on some music and chose an album I remembered my mum listening to when we lived in Scotland; “Bridge Over Troubled Water” by Simon and Garfunkel. Dad said it was ‘quite nice’ and I told him I remembered my mum listening to it and, in fact, I even still have her old LP version of it that I inherited when we moved to Northern Ireland. I told him that, although I was only five years old when she died, I remembered mum listening to music. I remembered she liked Simon & Garfunkel, ABBA, Cliff Richard (in the ‘Devil Woman’ and ‘Carrie’ years rather than ‘Mistletoe and Wine’!) and Buddy Holly........

To my complete amazement my dad said “Yes, Buddy Holly. He died in a plane crash. Along with the Big Bopper.” My uncool dad knew about Buddy Holly??? Then he went further and told me they’d seen him in London!! At this point I’m looking at him with complete admiration..... “You saw Buddy Holly?? Live??” Instantly my dad became ‘cool’. Completely and utterly cool. Cooler than cool. He saw Buddy Holly???? 

My dad was born in 1944 and Buddy Holly died in 1959...... I should’ve done the maths and realised how unlikely it was that a teenage Glaswegian boy from a posh family would’ve seen him live in London, but I was too excited by this news and immediately asked him to tell me more.......“Yes”, he said, “It was in 1999. We saw it at the theatre in London.” 

My dear old dad had seen the musical theatre show of “Buddy” about the life of Buddy Holly. The Coolometer score crashed from ‘totally awesome’ down to ‘moderately middle class cool’ in that one sentence....!! But do you know what? It doesn’t matter. My dad is cool because he’s his own man. He’s my dad. Who cares about his music tastes? Not me. 

So if you think you’re cooler than other people, remember what Ben Folds taught us; 

“Make me feel tiny if it makes you feel tall but there's always someone cooler than you
Yeah, you're the shit but you won't be it for long
Oh, there's always someone cooler than you
Yeah, there's always someone cooler than you”

From “There’s always someone cooler than you”, song by Ben Folds

Be cool, but don’t be too cool to care about not being cool! 

Keep being fearless

Yesterday was 6-month MRI scan day. Never a day to look forward to but a necessary evil. I don’t mind the scan itself. Some people can’t stand being restricted inside a tube that’s making crazy thumping and clicking noises round your head. Personally I close my eyes and think about other things. Similar to when I was getting radiotherapy, I often pretend the noises are the cancer cells being zapped and killed...... Please note - I’m well aware that is NOT what an MRI scanner does!! According to the NHS;

 “Magnetic resonance imaging (MRI) is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.”

In layman’s terms it takes photos of my brain! 

Before the scan I get asked a series of questions..... my favourite is when they ask if you’ve ever done any welding. My childish sense of humour always makes me chuckle and I’ve been known to answer “No, and I haven’t poured any buckets of water over myself recently either!” Please note - This joke only works if the person going through your form looks like they may have grown up in the 80s.....

They also ask if you have any tattoos. Apparently this is  because tattooists used to use lead based ink and anything metal can heat up during an MRI. I do have a tattoo but it’s not old enough to use the old ink. Again cue the childish sense of humour; “Yes, but I didn’t get it done during the war and its not a prison tat or anything!” 

The type of MRI I get involves having gladolinium injected into a vein in my arm. This is a chemical and essentially results in clearer pictures.  

Fear of the MRI scanner can be a fairly common complaint. So much so that you’re given an emergency button to hold in your hand throughout the scan. If you find yourself feeling claustrophobic and starting to freak out then you can squeeze the button and presumably the scan will be halted. I say ‘presumably’ because thankfully I’ve never had to do it. Like many people, I don’t particularly like confined spaces, but my claustrophobia triggers are excessive heat and a fear of getting stuck.......particularly between two solid walls of rock. I think I watched Indiana Jones too many times as a child! Funnily enough, I don’t like snakes either....... (Again, if you didn’t grow up in the 80s then I have no idea why you’re even bothering to read this!)

I don’t mind lifts or small rooms. I reckon I could hide in a wardrobe if I had to without losing my mind altogether, but potholing would be a definite no-no. I’ve been in the catacombs in Paris without much issue but last year we visited Newgrange in County Meath, which is a ‘passage tomb’. As I slowly edged away from our tour group, I heard them being advised not to take any bags inside as the way in was very narrow. The worst I ever experienced was going into a hong in Thailand. A hong is essentially a rocky island with an open centre. To get into the middle you have to go through tunnels in a low lying canoe. At some points the tunnels are so shallow you have to lie flat in the canoe. It’s like lying in a pea pod, except the peas are overlapping so my son had his head on my tummy and feet at the end of the canoe, and I had my head on my husband’s tummy. And it’s hot. Damned hot. I lay in that canoe, with solid rock an inch from my nose, sweating, and I could feel the panic rising. I could hardly breathe by the time we popped out into a vast open cavern, surrounded on all sides by skyscraper-like rock faces; that one tunnel the only way in and out. 

Unfortunately an MRI scanner doesn’t bring you the same visual rewards a Thai hong will bring you. You do not emerge into an impossibly perfect oasis of crystal clear water, blue skies, and monkeys. With an MRI you emerge back into a hospital room...... but you also emerge knowing the experts can now see what’s going on. I’ve been very fortunate that since treatment I’ve always had improving scan results. The day that changes might be the day I develop severe claustrophobia. 

In the meantime my anxiety doesn’t come from the MRI scanner but rather from the wait for results and the use of the contrast dye. My veins are completely rubbish. They gave up long ago and are spindly sunken threads that hide well below the surface of my skin. To compound the problem I also have ‘a bit of a thing’ about anything being put into my veins. Too many films and Stephen King books makes me imagine death by lethal injection....

The medical staff are always very good but I now have to have an expert from Infusion Services put in a cannula every time I go for an MRI. Yesterday even the expert struggled but I told her to keep going. There’s no point travelling over 50 miles away from home to return home not having had a full scan. As she apologised and explained the ultrasound showed a vein but it was deep, I watched as she produced a needle so long I joked it might go into the crook of my arm and emerge from my funny bone! I repeated my mantra over and over as I do every time a needle is produced “I’ve had two brain surgeries and I was awake for one of them. I’m not afraid of a needle. It’s nothing. A quick, sharp pain. I’m not afraid.” A sharp jag and a pool of blood later, it was done. It took an hour and a half to get that vein. I’ll not pretend there wasn’t sweat running down my back by the time that cannula was in, but there was no tears or drama. I lay in that scanner and imagined the loud tapping was a woodpecker, pecking out any cancer cells that might be in there. 

So if you ever need to have an MRI, remember to just imagine the woodpecker is pecking away the badness or whatever daydream works for you.  

When I go to appointments I like to pick appropriate t-shirts. Usually Finding Dory ones about short term memory loss or being fluent in whale. For chemo my sister bought me one that said “Still hoping chemo will give me superpowers” (And, for the record, still not convinced it didn’t. Something certainly seems to have!)  Yesterday’s confidence boosting t-shirt was a cracker I think......

To all those living with...... keep being fearless xx

Staycationing

Being able to travel overseas is something many of us take for granted. Not everyone can afford to, or chooses to, but we know we can if we want to. I’ve been very fortunate over the years; as a kid I went on a family holiday almost every year, as an adult I’ve gone on holidays whenever we could afford it. I’ve road tripped down the East Coast of USA as a teenager, and I’ve done the same on the West Coast with my own husband and son. I’ve been to Paris, Barcelona, New York, Washington DC, Nashville, Atlanta, San Francisco, Las Vegas, San Diego, Los Angeles, Krabi, Phuket and Bangkok to name but a few. 

Truthfully, despite all these adventures, I’ve never been very good at travelling! I’ve joked for many years that I’m not built for it. Since I was a child I’d always experienced severe motion sickness..... anything faster than a skateboard could be enough to start me throwing up. I would NEVER sit in the back of a moving vehicle even to this day. A lifetime of roadside vomiting has left me somewhat scarred. I even carry an ‘emergency sickbag’ in my handbag, courtesy of EasyJet.

Strangely brain surgery seems to have rectified the issue. I can get dizzy from moving too quickly, but can read a map in the passenger’s seat of a moving car and can even go on a boat! 

I never thought I’d see the day I got excited at the prospect of road trips around the UK and Ireland. Thankfully that day has come. I say thankfully because it seems my wings have been clipped through no choice of my own......

Last Christmas friends offered us the use of their holiday home in Spain and refused any payment. We were very grateful and were looking forward to a break in the sun. We booked flights for the beginning of October but then decided to change them to April next year due to the pandemic. What neither of us considered was the impact of the UK’s EU exit....... no more E1-11 card for health care. So I priced up travel insurance..........

Have you had any medical condition for which you needed treatment over the past 3 years? Yes, brain tumour. Has it been fully removed? No. Was it benign? No. Response? A polite ‘no’ or simply no more questions and a freezing of your application. Finally I found a company that would insure me for a single trip..........at a cost that was more than we’d paid for our return flights!! 

What to do?...... Pay it?  Risk it? Rethink? We went with option 3. No viva Espana for us. Fortuitously, EasyJet are allowing free transfers on all flights due to C-19 so we were happy to change to a long weekend in Edinburgh. We will probably do a bit of an Irish road trip at some point too. Last year we went to Galway and Athlone and had a brilliant time. The year before we took the car on the ferry and had various stop offs in England en route to see my sister in Manchester, and further stop offs in Scotland on the way home. Again, great fun.

I love the idea of swimming in a warm ocean, but I’m fortunate enough to live close to one of the most beautiful coastlines in the world. The sea is always cold, but it reminds me I’m alive! 

So am I sad the option of travelling has been taken from me? A bit, but not hugely. Road trips ahoy!! Always a silver lining....... living with xx

Lockdown

We have now been in lockdown since March....... I think it’s about 8 weeks. I think I’m probably luckier than most; I’ve  basically done this before. I’ve learnt how to appreciate the simple things in life. I appreciate what I have.

 I’m also fortunate that I’ve been able to work from home, and have even found myself far more productive! Last time I worked from home I hated it and couldn’t wait to get back to colleagues. Things were different then....... I was scared, confused and recovering from a hugely traumatic experience. I hated being alone and pushed to get back into the office. This time I’m much more settled and relaxed. I’ve plenty of work to do and complete peace and quiet to do it. Hubby is still out working, so it’s just me and the dog. I start early, take a lunchtime break for a quick dog walk and food, back to work and a relatively early finish. Balance! 

It’s difficult not to enjoy the quieter pace of life. We’ve had some glorious weather and I’ve even found myself planting pots and window boxes. I’m sitting here now watching hubby paint our garden fence in anticipation of our new shed arriving! We miss our gigs, but we’re both making the most of the down time and enjoying time doing much needed work on our house and taking gentle strolls in quiet places. We’re very grateful for living where we do; within a very short walk we have a lovely forest and river, and within a very short drive we have beautiful beaches and coastal paths. 

Our gig plans for the year have completely collapsed, although as ever luck has shone on us with most rescheduled to next year, hotels refunding and flights allowing free changes. 2020 has just been delayed until 2021. 

Covid lockdown mostly sucks....... but some bits don’t!! Enjoy the simple things. We might need to watch the sunset socially distanced, but we can still watch it knowing it’ll rise again in the morning.

The blue swimsuit

Once I stopped taking steroids and started to lose a bit of weight I bought myself a new swimsuit for sea swimming. Some time ago I lost it. I know, I know, how does anyone lose a swimsuit? Truthfully, I don’t really know! I think I accidentally left it at the beach after a swim, but it never turned up again. It was a lovely shade of blue and, despite buying a new swimsuit that was exactly the same but a different colour, I’ve never liked it as much as the blue one. My friend says that everything went to crap after I lost that swimsuit....... she blames that loss for covid-19, her thyroid becoming under active, just everything bad in general lol.

I decided to get another blue one, the same as the one I lost, and optimistically bought a smaller size...... Today I wore it for the first time :) I think I must be one of the few people to be losing weight while in covid-19 lockdown! No morning poached egg on toast and no afternoon buns!! 

Allowed to travel short distances for exercise, I travelled a few miles earlier today and met up with my sea swimming friend. I had my first dip in ages and, despite still being freezing hours later, I feel amazing! I got out of that sea almost the same colour as my blue swimsuit....... urban camouflage......like wearing a Laura Ashley dress and standing in front of a Laura Ashley sofa lol.

We’re back in the sea, I’m back in a (smaller, yay!) blue swimsuit. Life’s balance has been restored! Only good times now xx

Messy hair but I don’t care

I’ve lost track of how many weeks we’re into this COVID-19 carry on...... about two?? Who knows, time isn’t my strong point anymore. Suffice to say it’s pretty rubbish! My hair, that I swore I wouldn’t grow long again for handiness sake, is like a big shaggy mess. I look like a two year, with bits flipping out everywhere and a big floppy fringe! Not to mention my husband’s eyebrows...... we may have to get the strimmer  out!!

Spring has finally sprung..... I can say this with confidence as I am currently sitting in my back garden in a t-shirt, with the sun on my face, watch a queen wasp looking for a suitable place to build a nest....... hopefully not in or near this garden please!! 

Instead of looking forward to our first sunny sea swim tomorrow, we get to walk the dog to the end of the road and back. I miss the sea but darling hubby tried to rectify this a bit for me yesterday...... cold water with salt in a big plastic container for me to dip my feet in. I think the North Atlantic is warmer lol, but my feet were very grateful! Also we are lucky because there are fields at the end of our road so the dog can get a good run around. She’s thoroughly enjoying the whole social distancing thing....... I’m working from home so here with her all day, every day, and she gets an extra walk at lunchtime during the week. Like us, I’m sure she misses adventures a bit further afield at the weekends, but the most important thing is that we’re all safe, and as I sit here in the sun I can’t say it’s a massive hardship at this precise moment!

The only disruption to my sun worshipping is all the gardeners and outside odd-jobbers that have come out! Sit yourselves down menfolk..... get a cuppa...... INXS are on my Playlist...... oh, wait, no it’s The Rolling Stones now! Spotify makes some cracking mixed tapes!!

I am missing gigs, but the ones that aren’t going ahead seem to be rescheduling to next year, so I guess we’ll just go to far too many in 2021 instead of 2020.

Our Riverbank Relatives Room May have to be used as a temporary ward during these strange times, and you know what? That’s absolutely fine by me. So long as it’s helping people then it’s serving it’s purpose. Hopefully it’ll give some comfort to patients, relatives or hospital staff. I’m sure we’ll get our grand opening at some time in the future, but it was never about grand openings anyway...... it was about a group of friends coming together to help people going through a tough time. That mission is being accomplished as I write.

I have no idea if our gig will go ahead this year or not. It’s not until 19 September but we’re living in uncertain times. We’ll sort something out, even if we have to be a bit inventive. 

I hope you’re all heeding the advice and socially distancing to keep everyone safe. It matters! Stay strong and Happy Easter xx

Night night Kenny

Kenny Rogers died. I heard this morning and did the obligatory morning listening to some of my favourite Kenny tunes. My poor husband has patiently put up with my singing for much of the day....... made more painful by my need to imitate a Deep South accent..... Again obligatory I think! The music got me reminiscing.....

My dad has always liked holidays that involve a lot of driving. He likes to be behind the wheel and to be in charge of where we ended up and where we stopped along the way. As a kid he would pack up my sister, step sister, step mother and I and off we’d go. Usually back to Scotland. As we got older we ventured abroad more.

As a very young child living in Scotland I remember a boxy dark red Volvo that had broken back door handles..... the doors were held shut with bungee cords and you had to sit in the middle of the seat so you didn’t fall out if the doors managed to fly open! That was when there was just the three of us; before my dad remarried.

After we moved to Northern Ireland our road trips home to Scotland became an annual event. We were fortunate kids. Dad had good jobs and we got a holiday pretty much every year. The road trips involved the adults in the front and the three girls in the back of whatever ‘family friendly vehicle’ we had at that time.  The one I remember best was a midnight blue Granada Scorpio that was his pride and joy. it was a company car and he was rightly very proud of it. He had been made a Managing Director of a company and his Scorpio even had a car phone; a very grand thing to have in those days! Not that it was ever really used because it cost a small fortune to use it!! 

Anyway, with dad working such long hours and travelling so much too, the one time we all came together as a family was for the annual holiday. The three girls would get piled into the back seat, with me always squashed in the middle because I’m the youngest. I used to get horribly car sick........ I have thrown up at the side of many Scottish side roads. I distinctly remember a road trip to France that took forever because it involved so many roadside vomiting sessions. Not to mention me having to use anything we could find in the car when emergency struck - plastic bags, tissue boxes...... whatever was close at hand!!

I wasn’t a fun person to go on a car journey with. And don’t even start me about the ferry......!! Anything faster than a skateboard and I was green and looking like the doll in the Exorcist :(

But how does this have anything to do with Kenny Rogers?? Well, travelling with such a nightmare passenger often led to family rows....... rising stress levels........ increased spewing up!! There were a couple of preventative measures that helped.......open windows and music. Of course, a family of five will rarely agree on music choice so that often led to more rowing. Probably a fairly normal 1980s family holiday! 

There were, however, two albums the whole family agreed on...... Neil Diamond’s The Jazz Singer and Kenny Roger’s Greatest Hits. To this day listening to those albums takes me back to being a kid and I still know every word by heart. Even in my rebellious teenage rocker years, stick on The Gambler and I’d be singing along. It remains true to this day....... and I’ve spent this morning proving it....... stick on some Kenny and I lose all sense of cool!!! I won’t be able to stop myself from singing and dancing as if I was born and bred in Nashville. And I just won’t care. Or stop! 

So I’m sad to hear the world has lost one of the men who could cut through teenage angst and the need to be cool. 

If you’re feeling anxious in these scary COVID times, stand up, stick on some Kenny Rogers and sing and dance your way out of it!! Trust me ;) 

Keep safe xxx

Corona panic

Up until Friday I wasn’t really taking corona virus too seriously. Yes, it was bad, but I also know how much people love a good drama. Friday changed things a bit for me....... first I read an article about Italy and how the whole country is in lockdown. Next I travelled to Belfast for a meeting and was spoken to by my Line Manager....... there had been discussions. I’m classified as high risk. I was instructed to work at home where possible and not to travel to other locations for meetings. I realise that many people would be delighted at this.....”work” from home...... I know some who claim to do that already. They tend to never have real health issues but also never seem to do much work. The prospect of working from home doesn’t appeal much to me. I’m limited in what I can do and I thrive on being around other people. Whilst I appreciate why I’m being told to do this, it makes me feel weak. It reminded me that I’m not at peak fitness and am still a bit delicate......... something I spend a lot of time ignoring and ploughing past! 

When I came home on Friday I found that everyone I spoke to seemed to have moved from a ‘no need to panic’ position to a ‘we need to be really careful’ position...... People I respect. The ‘not prone to panic’ brigade suddenly ending sentences with ‘just in case...’ and ‘have you heard Tom Hanks has it?’!!

And so on Saturday morning hubby and I found ourselves doing what I called an apocalyptic shop! In fairness it was more of a mild panic shop..... we did buy toilet rolls and stock up the freezer and cupboard, but we didn’t stock a nuclear bunker! It went against the grain but it felt like a sensible thing to do. Just in case.....

We are constantly being advised to wash our hands. Do we not do that anyway?? Though in fairness I never realised how much I touch my face.... I have become acutely aware that I am constantly doing it! Hand washing has increased to Lady Macbeth levels....... not just after using the toilet or before/after eating, now just random scrubbing. Just in case......

The thing that has upset me most is the delay in being able to open our Relatives Room in Causeway Hospital. The money raised through our Macmillan fundraising has been used to create the Riverbank Room and I couldn’t be prouder. Our team of family and friends have created this wonderful space; a haven in the frenetic and scary hospital environment. Themed on The Wind in the Willows, the room surpasses all my expectations and I’m sad it’s going to take longer than expected to be able to officially open it. But it will be open as soon as the furniture arrives. An actual ribbon might not have been cut, but trust me we’ve worked tirelessly to ensure lots of red tape has been snipped through over the past two years. The Riverbank Room is there. If you gave anything to Triciafest or my sister’s  wedding (money, time, energy...) then you are a part of something special. I’m going to post a video on the Triciafest Facebook page so head over there to see more, but photos below.

Thank you from the bottom of my heart. As everyone keeps telling me; STAY SAFE!! Much love 💕 

The hangover

Night time is when worries haunt many of us. Personally, when I go to bed I start to think about all the stuff that’s causing me concern. Over time I have taught myself to think about other things through breathing exercises and using my imagination to think about good things. The worries are still there but I’ve turned my mind away from them. They’re buried.  

Last night I went to bed and realised I couldn’t think of anything to be worried about! For the three years since my brain cancer was diagnosed, I’ve been dealing with a hangover of sorts. Finally I feel like a lot of it has lifted...... There have been a lot of things going on over the last three years, many of which have started to resolve themselves this year.......

First and foremost I have been trying to keep myself well. I’ve been worried about my cancer getting worse again. A couple of weeks ago I got the news that there are no cancer cells visible on my scan! This does not mean I am cured. The caveat was that there are likely to still be cells underneath the scarring and damage caused by treatment. But they’re not lighting up on the scan so they’re not active. The best news I could get.

Secondly, I’ve been in a bit of a battle to get changes made within the Belfast Trust. I now feel I’ve done my bit to drive this forward. It’s not finished, but I believe I’ve helped make a difference. 

Thirdly, since my return to work I’ve had a few difficulties. Again, nothing it’s appropriate to share publicly. Suffice to say, I’m now clearer in my role and responsibilities and have also learned the art of not worrying about anyone else’s actions or lack thereof!

Finally, I’ve been worrying about showing tangible outcomes to those of you who so generously gave your time, energy and money to Triciafest. Since the first year I’ve realised that so long as the money comes back locally then that’s enough. Macmillan use it to help local patients and their families and they are experts in knowing what’s needed. The first year though I pushed hard to get something for my local hospital. After almost three years of ‘head pecking’ our refurbished Relatives Room in Causeway Hospital is almost finished. I am beyond happy and excited and I cannot wait to see it all done and be able to share our achievement with everyone who’s been a part of our fundraising over the past three years.

So I’m feeling very light. Worries have been lifted. I’ve found my state of Hakuna Matata!!  

Hide if you want, but I’m not seeking!

Oncology this morning. We had a nightmare journey down the road...... the traffic was so bad we had to make a quick diversion and take a different route. We got to the Royal with about 5 mins to spare...... only to meet a queue of traffic for the car park. This is a common problem and we always leave early to allow us extra time to get parked, but the worse than normal congestion on the motorway had left us with no time for car park delays! We had no choice but to split up...... hubby dropped me off and I took to my beaters...... my phone pedometer says I’ve been ‘lightly active’ today........ I’d beg to differ! I ran from the front of the hospital, through to the back old building, pulling off my coat as I went......like a wee young thing!! After a final, agonising delay at the lifts, I finally made it to my appointment with literally two minutes to spare! 

Of course I needn’t have worried. I sat for almost 15 minutes before I was called. I don’t like going in to see consultants on my own, but hubby was still on a car park tour so I had no choice. Thankfully the news was good.......

Essentially there is no sign of any cancerous activity. The Oncologist explained that my brain is scarred and battered from the surgeries, radio and chemo. It will never look like a ‘normal’ brain. I’m not convinced it ever would have! 

Anyway, all this scarring means they cannot see any signs of cancer. The words used were ‘There are probably still some cancerous cells underneath, but they’re not showing up on the scan so they’re quiet at the moment.”

That’s the best news we could probably get. Hubby walked in just as I was coming out and I felt the tears starting. Why was I crying?? I’d just been given amazing news but all I find myself focusing on is the knowledge it’s going to come back one day. The oncologist had confirmed when I said I knew that was the inevitable outcome...... to him I’d laughed and confidently said “But you don’t really know. It might not. Everyone is different.” but walking back into reality I felt the shadow of cancer hovering over me again. 

I think it’s normal to feel fear, but I won’t let that sort of maudlin attitude last. It’s not healthy. I went to the ladies room, looked at myself in the mirror and said out loud “They can’t see anything. Maybe it’s gone. They don’t know. You don’t know. Sort yourself out.” 

I came out, took my husband’s hand, and we left the hospital yet again. We had a cuppa, took a walk round a few shops and then met our gorgeous big son for lunch before heading home. I made a point of texting people to tell them the good news in a bid to remind myself that it being happy wasn’t  going to curse me!

As I sit here blogging hubby is listening to music. Giving my writing a soundtrack...... As Jackson Browne sang “Doctor my eyes” I stood up and put out my hands to my husband of 23 years. As we danced round the living room, I cuddled in close and felt all the anxiety and negativity wash away. 

It’s a positive attitude, not a tempting of fate. I can’t be afraid of things that haven’t happened. How does the quote go??

“Yesterday is history, tomorrow is a mystery, today is a gift, which is why we call it the present.”

My present is great. I have a wonderful husband, fantastic family and friends. I have a good life. I’m not letting a few cells that may or may not be hiding cast a shadow over our happiness.

I’m not seeking. Let’s dance!! 

When music and books collide....

I have just made a hugely cool connection. 

Anyone who knows me knows two of my favourite things are music and books. So you can imagine my joy at realising two of my favourite things have collided in the most perfect way........ here’s the stories....... story 1, story 2, story 3, story 4, and then the thread that weaves them all together.......!

Story 1 

I love rock music. I have been attending gigs since a young age, often lying about my whereabouts in order to sneak off to attend venues I was too young to legitimately be in..... Thankfully I am more than old enough to attend gigs now without the need for parental consent. One of my favourites was some 8 years ago...... it was my birthday and we went to see a local band called NASA Assassin. Having consumed way too much tequila I found myself being pulled up on stage to ‘perform’ a mash up of Stevie Nicks’ Edge of Seventeen and Pink Floyd’s The Wall. And by ‘perform’ I mean dance like yer ma and sing along whilst trying to stand well away from a mic. This drunken night earned me the nickname #6 (the band has 5members), a title I have worn with honour ever since.

Story 2

My favourite book is The Wind in the Willows by Kenneth Grahame. I think my mum must’ve read it to me when I was a very young child. She passed away when I was 5 years old, but I can distinctly remember having a cuddly toy of a mole when she was still alive. I can’t think of any other books or tv shows that had a mole as a main character. Moley went everywhere with me, even when his orange felt nose wore through and his stuffing started to fall out.

Story 3

When I was first diagnosed with cancer I obviously spent a lot of time in hospital being treated. During this time I read a lot. My son bought me a gorgeous, illustrated version of my favourite book and I read it repeatedly. It gave me great comfort and helped keep me stay calm. Reading it transported me somewhere else..... to a peaceful place, surrounded by nature.  

Story 4

Our annual charity rock gig has raised thousands of pounds for Macmillan Cancer Support. My good friends in NASA have played at it every year. One of the things that was very important to me was being able to show tangible outcomes. I want everyone who’s given their precious time, energy and money to Triciafest to know they’re making a genuine difference to local patients and their families.

One of the things we are doing is refurbishing a Relatives Room in Causeway Hospital. It is a vision that’s been clear in my mind for a very long time and when work finally started on it last week I’ll admit to a few tears of joy. 

When asked for a theme for the room I had no hesitation...... The Riverbank Room has been my dream for the past two years! The reason I picked this theme is because I love The Wind in the Willows so much and with the hospital close to the River Bann and the general feeling of peace that naturally comes from water, it seemed like the perfect name and theme for a haven where patients and their families can seek quiet from the busy hospital environment.

The one thing I wasn’t sure about was the lack of a music link........ surely a room created by music lovers should have a music theme running through it somewhere??........

The Thread

The Wall is a Pink Floyd song and album first released in 1979. It’s a famous and iconic album. My Bez-like tequila hazed dancing did the song no credit at all! I’ve always loved a bit of Floyd...... the albums I had as a teenager were The Wall, A Momentary Lapse of Reason, Dark Side of the Moon and Wish You Were Here. What I’ve only just discovered....... and it’s blown my mind a bit........ is the name of their first album........ The Piper at the Gates of Dawn........ 

“....it takes its title from chapter seven of Kenneth Grahame's The Wind in the Willows, and was recorded at EMI Studios in London from February to May 1967”

Mind. Blown!! No more need to feel like the music connection from our Riverbank Room is missing. It was there all along......

“This is the place of my song-dream, the place the music played to me”

From The Wind in the Willows (Ch 7), by Kenneth Grahame 

Year 3

How did I mark my third seizureversary? Three years on from the grand mal seizure that led to the diagnosis of an incurable brain tumour...... that in turn led to two brain surgeries, radiotherapy and chemotherapy........ which in turn led to phenytoin toxicity that resulted in my family being told I had four days to live (the two year anniversary of which was last week). 

Momentous times. How did we mark it? In the best weekend ways possible. 

Eating pizza.

An evening watching Snow Patrol playing an intimate, acoustic gig. 

Brightening my dad’s day with a DAB radio tuned to Classic FM. 

Enjoying a Wine Bar lunch with my sister. 

Having an afternoon nap in preparation for a night in our favourite rock club watching the brilliant Quireboys with good friends.

 A family breakfast. 

A walk in the place I had walked twice in the week before life changed...... Downhill Forest. 

We even visited my favourite tree...... one of the largest Sitka spruces in Ireland...... I call her Rosie because there’s a whole lot of her. Angus is a bit smaller and located along the path from her. 

It’s been a huge three years. Full of massive adjustments in our lives. Big, serious stuff. But also massively rewarding and life affirming stuff. Joyous stuff. The stuff that helps you understand what life is all about. 

Next weekend brings less dramatic anniversaries...... my 23rd year married to the best man on this earth, and my sister’s birthday. 

Three years on and still going. Living with... xx 

A busy day off

Today was our weekly day off work. Hubby decided to work overtime so I was home alone...... I don’t really like being home alone any more. I much prefer company. But I can’t always be with other people and I’m slowly learning to be content in my own company again. So this morning I got up only slightly later than usual. I moved slower than usual, but I was up and moving early. 

In my own good time, I went to see what was going on outside. Our dog had alerted me to someone at the door but I was in the shower at the time. A gas company were digging up the road..... I popped my towel wrapped head out of the front door and the workmen told me I should move my car out of the drive as I might get blocked in. I got dressed and dried my hair at my own pace before moving the car. No rushing for this girl. And oh what joy that I could legally move the car myself!!

When moving the car I decided to just pop round the corner for some tea and toast in the local cafe. When there I met my former Pilates teacher....... she had actually been the first person outside of family that I spoke to after I was diagnosed 3 years ago. She works for St Johns Ambulance and saw me in the hospital cafe with my son.  I had literally told him my diagnosis 15 minutes earlier. He was 18 and studying for his A-Levels but reacted with incredible maturity. From that day on he has continued to have absolute faith in me. Along with my husband, sister and close friends. Those who know me best know I won’t lie down to cancer.

So this wonderful woman walked into the hospital and became the first person I told I had a brain tumour. It was a key moment - the first time I had to say the C word to someone outside of family.  She was absolutely brilliant and it was lovely to see her today so she could see how much I’ve improved. 

I left the cafe to go and get a hair cut in Portstewart. The sea was really rough after a recent storm so when I left the hairdressers I decided to go for a stroll. I drove between Portstewart and Portrush and stopped at a viewing spot. I took a brief stroll and met a lady with her dog. We began to talk and she told me about her cancer journey....... yet another serendipitous meeting To add to the many I’ve had over the past few years. We shared some worries and we were able to empathise with each other over some of the concerns that are so hard to get past on some days. Today was a good day for me so it was nice to pass on some of the positivity to her, like so many have done for me when I’ve been having a more melancholy day. By the time we parted company we had shared laughs and exchanged phone numbers. Another fellow warrior to add to the many, many others I had met.

I came home and delightedly started putting “steroid chubby clothes” up for sale on EBay. I’ve spent a fortune on clothes the past few years. I initially lost a load of weight but then steroids blew me up. Now I’ve shrunk a bit again.......I’ve lost over 2.5 stone from my heaviest steroid weight! I’m still a bit bigger than I was, but I’m happy enough. Big sized clothes are filling my wardrobe and spilling over into my son’s  room, taking advantage of him being at university. They have to go! 

So the wardrobe is being sorted......slowly....... no rush....... I’ll get there!! Yesterday marks the two year anniversary of my phenytoin toxicity when I was given 4 days to live. Next week marks 3 years since my initial grand mal seizure. 

More importantly, next week also marks my sister’s birthday and my 23rd wedding anniversary. 

There’s always happy to be found.

#livingwith 

Taking a bit more back 💪🏻

I’ve had a pretty rotten few days....... down with the lurgy. Unfortunately I find now that a cold/flu just knocks me for six and can very quickly drag my mood with it. So I’ve been pretty miserable all round.

As ever, I craved some Vitamin Sea. Yesterday we walked the dog by the sea and it definitely helped. But by this morning I was as miserable as yesterday morning again. Why are colds and flus are always worse in the morning and at night? It doesn’t help that I recently had confirmation I’m menopausal. Hubby pointed out “It’s not much wonder when you look at what your poor body’s been through the past few years honey”....to which I snapped “Aye, look what my body’s been through! I’ve had enough ffs!! I could do with getting a break!” This morning I felt horribly sorry for myself. I was tired and felt old for my years. There were a few half hearted self pity tears

I had another slow start but was more determined than ever to get more fresh air. I knew sea swimming would be pushing it a bit so we went for another walk with the dog. A longer one this time. It was wonderful. The sea air is restorative, of that I’m quite sure. 

On our return home, I decided to try something else. My Sunday ritual was always to have a bath in the afternoon when hubby was watching football. I haven’t been able to do that for a long time...... muscle wastage and aches and pains from treatment made it a challenge to get in and out safely, even with help. 

Our bath doesn’t have handles on the sides........ I would get crouched down but then not be able to sit down. It was a case of just crashing, sending water sploshing all over the floor and anything else in the vicinity. The last time I tried it I compared myself to King Fu Panda........ ska doooooosh!! I then managed to find myself unable to get out. I think I blogged about that experience previously......funny but a bit depressing too.

I’ve slowly been getting stronger and hubby bought me some lovely Lush goodies as a Christmas present for when I felt like trying again. Today was that day....... 

In went one foot. In went the other foot. Deep breaths and words of encouragement from hubby. I crouched as much as I physically could before feeling like my knees would snap...... my wonderful husband put his hands firmly on my back and gave me kind instructions. Before we knew it I was in!! And crying. It felt amazing and, similar to driving again, it’s symbolic of me getting stronger and getting more of myself back.

 It might not have been the most elegant entry but the water was still in the tub. I shed a few joyful tears as hubby praised me (before heading back to the football!) I lay back in the pink water in delight. Bliss.  I had my Bluetooth speaker and the company of some happy music. The warm, bubbly water felt wonderful. After a while I decided I should try and get out. My wonderful husband yet again paused the football to come and help. It was a special sight I’m sure....... I’m definitely no Cleopatra.....

When I got out I spent time massaging thick, sweet smelling moisturising butter into my skin....... I used to do this every week and it feels so good to do it after a nice hot bath. 

It’s a small things but I know the girls reading this will understand. I’ve never been high maintenance but I don’t know any female who doesn’t enjoy having nice, soft skin. Plus I smell delicious! I shower every morning so I’m pretty confident I never smell bad, but I think it’s fair to say I smell particularly good tonight! I’m girlified. And I’m not nearly as miserable as I was this morning.

Small things but symbolic accomplishments. Living with.... xxx

Immovable objects

2019 is nearly over. It’s been a big year, full of fun and achievements. I’d never have believed I’d have been to a garden party at Buckingham Palace, got my official Arcadia Bathing Club membership certificate for a year of sea swims, gone to gigs galore, raised thousands of pounds and appeared in a promotional video for Macmillan, and got my driving license back within a year. 

It’s been a great year and thankfully I’ve maintained stable scan results throughout. Cancer and I continue to live together in harmony. I’m trying not to annoy it and it seems to be returning the favour. Emotionally and physically it’s not always easy, but I’m definitely stronger than I have been since that initial grand mal seizure in the early hours of 20 January 2017.

20 January 2017....... hard to believe, huh?? Almost 3 years. I remain the luckiest unlucky girl in the world. Sometimes the years flying by terrifies me...... sometimes I remember it’s one step closer to the day this beast in my head loses its temper again..... but then I remind myself to flip that thought around. Nobody has ever given me a timescale. Nobody knows. The years are there for the taking and I plan on continuing to fill my glass. I still believe it’s not impossible for me to be the one that beats the unbeatable. What is it they say about immovable objects and irresistible forces??..... 

Truthfully, I didn’t know the answer to that riddle. Science was never a strong subject for me. I just had a quick google and it seems the answer is nothing..... when an immovable force meets an irresistible object absolutely nothing happens. I’ll not try to explain why but will happily accept this as an outcome. I’ll keep being the immovable object to cancer’s irresistible force and things will stay as they are. If I’m really fortunate I might even become the immovable object that engulfs the irresistible force and stops it for good. Who knows?? 

What I do know is that I am stronger and happier. My life has changed but generally in good ways. 2020 looks set to continue in that positive vein...... there are lots of happy times on the horizon and I can’t wait to get stuck into another year of #livingwith...... 

Santa splashing with friends :)

I love Christmas! For so many reasons...... 

First I get time off work. I generally love my job, but every job brings challenges and it’s only healthy to get the odd decent break away from it!

Second I’ve had lots of recent get together with friends and family, and more to come.

Thirdly we get extra sea dips...... today was the Santa Splash. Conditions were perfect. I arrived down just on time but after flaffing about looking for my friend and then having the hassle of needing to pee at the last minute (swimsuit nightmare!) I ended up living up to my Santa hat........ “Princess”.......and was about the last person to enter the sea! Not that it mattered. My friend found me, and my other friend and her daughter were with me too. There were hundreds of people laughing in the sea. The wave height was perfect and it wasn’t even all that cold for December........ although one wave did hit my hat, causing the white bobble to flip forward and give me a wet slap in the face!! Sure that’s part of the fun of it.

Hubby had been dispatched to collect the Christmas food but my mate was an excellent back up support team! He helped his wife and I to maintain our dignity while manoeuvring (wriggling) our way into towels and Coucons*, out of swimsuits and into clothes. Hubby arrived just in time to take me home and we enjoyed hot cups of tea with our friends beside the Christmas tree. 

We’re now finishing off our evening watching Top Gun. Best. Husband. Ever!!

Tomorrow he has to work so it’ll be wrapping and housework for me. Then it’ll be Christmas Eve and our gorgeous son will be home for a few days. Perfect!

Enjoy Christmas everyone xxx

Happy Christmas to me!!

It’s been a big week! 

On Saturday I got my ‘entirely stable’ scan results. Woop woop!!

 On Tuesday Macmillan released a video I appeared in. It featured patients reading out thank you letters to their Macmillan nurses. It was a lovely, positive campaign and seems to have gone down well. The nurse I thanked, Terry, and I were both interviewed for the Belfast Telegraph. He described me ‘very special’ and said I’d ‘worked really hard to get her life back on track again and she’s a great inspiration.’ He’s very kind but I’ll admit it made me feel heart warmed to read such kind words from a man I deeply admire.

Then today........ I had it confirmed I could drive again!! After almost three years, I finally got behind the wheel again. It all happened so quickly! I had expected insurance to be a total pain but we walked into the local office of our car insurance company and I walked out insured. Hubby handed me the car keys and told me to drive us home.......

Thankfully driving is not like playing piano...... I used to play piano as a kid and got as far as my Grade 6. The problem was that my lesson was at 5pm on a Saturday evening every week. As a teenager I didn’t want to have to be home for piano lessons on Saturday evenings...... I wanted to go to my friends’ houses or go ice skating. Once I hit 15 I’d discovered rock music so I used the excuse of GCSE pressure to bow out of piano lessons (yeah, right...!!) By the time I wanted to play again, many years later, I was horrified to discover I’d forgotten how! I couldn’t read music anymore and didn’t have the patience to re-learn. So thank goodness driving is more like riding a bike..... you don’t forget! 

I have been fortunate. I have a wonderful husband and friends more than willing to ferry me about. I’m fit enough to get buses and trains and even sometimes walk home from work or town. Getting my license back is more about confidence. It feels like another big step forward. It further proves I’m going in the right direction. I’m getting stronger, despite cancer. 

So I’m stable, have done a wee bit more for Macmillan  and I’m mobile again! Happy happy Christmas to me......and to hubby..... I’ve no intention of ever drinking again so now I’m the taxi! Happy Christmas to us all! 

Living with xxx

The Waiting game

Waiting is something I’m genetically predisposed to do badly. My father can’t sit still and is always moving ‘with purpose’. It’s an apple that didn’t fall far from the tree.....But if there’s one thing cancer teaches you, it’s patience. If you didn’t learn how to wait then you’d drive yourself insane. 

I’ve definitely got better at it but I wouldn’t try to pretend I’ve completely mastered the art. Unsurprisingly I find it particularly challenging when waiting for life changing news. For the past few months I’ve been waiting for two such pieces of news....... 

The first is the return of my driving license. I applied to get it back months ago. I expect it to be fine as I’ve been seizure free for over a year and keep pretty well. I certainly don’t feel that I’d be unsafe behind the wheel.  But still I wait....... I’d been warned it takes a long time, but it’s getting really frustrating.

The second news I have been waiting for was scan results. I get MRI scans every 3 months or so, just to make sure my brain tumour is behaving itself. I’m not sure what happens if it starts to misbehave again..... probably not much unfortunately. I had my last scan on 6th November so it’s been a long month. Usually I get a letter from my Oncologist within a few weeks but this time was slow........

Every day I check the post expectantly and haven’t been able to help the sinking feeling of no news. Deep down I know that no news is usually good news...... if something was going wrong I’d hopefully hear sooner rather than later. But somehow that never seems to matter....... reason doesn’t really come into it. Particularly in the last two weeks I’ve found myself suffering a serious case of scanxiety. 

Yesterday hubby checked the post. He came in with a package, winked at me to let me know it was a Christmas present, and then casually handed me a letter.  I immediately saw the Hospital crest on the envelope and felt my heart start to pound....... 

I opened the letter and gave a shriek of joy as I read the words “........ remains entirely stable.” I literally jumped up and down, flapping the letter about! Hubby smiled and told me he’d never doubted it. I hadn’t really either, but it’s impossible to completely escape the shadow that cancer casts over you.  As he wrapped me into his arms, the tears started to flow. Relief poured out of me in rivers down my face and I was so glad he was there to hold me while I absorbed this huge and exciting news........ I think if I’d been alone I’d have been out shouting in the cul de sac!! We celebrated by doing the supermarket shop (life goes on!) but then went for a lovely lunch and had a relatively quiet afternoon. 

The weather has been awful, with another storm overhead today, so my head has been very sore. Last night we went out to watch Cormac Neeson and the Unholy Gospel Band......wow! Perfect choice! I’ll admit I wasn’t completely sold on going. You know what it’s like..... you decide to do something but then the time comes and you’re tired and can’t really be bothered...... that’s how I felt yesterday evening. It was cold and raining and I wanted to curl up on the sofa, not head out on a 35 mile drive to the venue. I’m glad I decided to go. It was a superb night’s music and it gave me a second wind as I went back to buzzing over my good news! I came home absolutely frozen and took ages to get to sleep, but when I did pass out I slept like a log. 

I’ve woken up deaf in one ear (despite ear plugs), but this is probably more due to the weather. I am looking out of my window at pouring rain and listening to the wind whipping around the house. I was supposed to be doing the ‘Polar Plunge’ today in aid of the Special Olympics but have known for much of the week that the forecast was awful. The surf report was just red triangles with exclamation marks in them for the whole day...... I’ve never seen that before but could only assume it was bad!! I consulted a friend who’s husband is a surfer and the response came back ‘Aye, he says we’re f**ked!!’ 

As a result, I get to spend today on the sofa. Thank goodness for that. I’ve paid my registration fee so there’s still money going to the charity, but I don’t have to brave pouring rain, freezing cold and 5 meter high waves! Win win! 

It’s a good day to be stable ;) 

Living with xx

A musical premonition

A few weeks ago I had a very vivid dream. I dreamt that I was standing chatting to Neil Finn. 

{Background: For those of you not familiar with him, he is lead singer and guitarist in Crowded House (‘Weather with you’, ‘Don’t dream its over’ etc etc). Finn has recently been out on tour playing with Fleetwood Mac since Lindsey Buckingham decided to part company with them. }

Anyway, so Neil and I are chatting and I ask him why he joined Fleetwood Mac instead of sticking with Crowded House. He told me that he’d discussed it with the rest of the band and everyone agreed...... he’d join Fleetwood Mac for two years to raise his profile, therefore also raising the profile of Crowded House. Whilst many know them, the band by their own admission, can be one of those that you don’t realise you know. I remember a greatest hits album many, many years ago being advertised with a slogan something along the lines of “All your favourite songs from the band you didn’t know you liked!”   So in my dream Finn acknowledged they weren’t well known globally and that after he’d done two years with Fleetwood Mac then Crowded House would go back out on tour and would get much larger audiences.

The dream was so vivid that I told people...... this turned out to be a good thing because I’m not sure anyone would’ve believed me if I’d said it yesterday...... when Crowded House released UK tour dates! 

A little weird..... though it’s yet another example of how complex the brain is. I can only assume that somewhere in my head was a ponder about why he’d changed bands.... and a possible (fairly sensible and possibly quite predictable) answer came to mind whilst I was sleeping..... Either that or all the jokes I make about brain surgeries leaving me slightly psychic are actually truth!! Hubby says it’s proof I’m a witch.... but I hope he means a white one like Stevie Nicks rather than a nasty one! I was going to say ‘like the wicked witch of the west’, but if you’ve seen the Wicked musical then you’ll know the truth about that and how you can judge people without all the facts..... 

Either way, this morning I booked four tickets to see Crowded House at a venue conveniently located, in another twist of fate, right next door to my sister and brother in law’s home! Again a bit weird, but also fun. 

My sister and I generally don’t share musical tastes. When I was rocking out to Metallica, she was spinning around to Kylie. When I was throwing horns to AC/DC, she was throwing shapes to Wham..... So it’s nice to find a bit of common ground! The tickets and flights are booked so hopefully I’ll get some decent weather to take with us ;) xx

Little princess

A few weeks ago I was invited to attend a charity night at a local spa, Perfections. I was given a free foot massage which was wonderful. While there I met two girls who were representing a local charity, The Gillian Adams Angel Foundation. Gillian was their sister-in-law and sadly passed away in 2015 from bowel cancer. She was two years younger than me. Far too young to die. Her wonderful family run the charity in her name and have a simple and clear aim ‘to help families who’s lives are being affected by cancer’. They offered me a range of help options. I explained that I worked and would feel bad taking anything but the insisted they wanted to help everyone, regardless of their circumstances. 

Today in the post I received a £100 voucher for a lovely local butchers. I still feel a bit bad taking it but cancer is an expensive business and this will go a long way. Thank you The Gillian Adams Angel Foundation! Xx

#livingwith

Triciafest Outcomes Update

As you will be aware, our inaugural Triciafest and my sister’s wedding donations raised over £8,000 for Macmillan Cancer Support. I fought very hard to get this money back to Northern Ireland and, more specifically, to my local hospital, Causeway. 

I promised those of you generous enough to give your time, energy, support and hard earned money that I would give you tangible outcomes. It’s been a long and often stressful journey, but I wanted to update everyone on our achievements to date....... Here’s a summary;

• The money has been given to the Northern Trust to be used to refurbish a Relatives Room in Causeway Hospital, Coleraine.
• We have chosen a theme for the room. The Riverbank Room will be based on The Wind in the Willows by Kenneth Grahame, and will be a place of peace and tranquility amidst an often stressful acute hospital environment.
• The room will provide a space where patients and their loved ones can go; whether it be to have some quiet time or have privacy to talk to each other or medical experts. 
• There will be relevant leaflets and tea and coffee making facilities in the room.
• We have found a wonderful, well known, local  artist who is going to paint Wind in the Willows murals on the walls of the room; further enhancing the sense of peace and tranquility. I’ve seen some of his work and he’s done up sketches that make me very excited to see the finished result. It’s going to be wonderful!
• After much pressure being applied by both myself and an excellent member of hospital staff, we now have some movement by the Trust’s Estate Services. we hope work will begin at the start of next year.

It’s frustrating that things have moved so slowly, but the public sector never moves too fast in my experience! More importantly, we’re getting there. Today I had a meeting with the hospital lead and the estates contractor and things are moving forward. I will look forward to showing off the room when it’s finished and I hope everyone who has contributed will feel proud of what we have achieved together.

In order to make things a bit easier this year, and also because I’m conscious not all contributors live within the Causeway Hospital area, this year the money raised through triciafest2 has been given to Macmillan to be used to help provide support to cancer patients and their families throughout Northern Ireland. The intention is to do the same with next year’s money. 

Triciafest2020 is provisionally scheduled for Saturday 19th September. We are currently securing bands to play at it, and will soon start gathering up raffle prizes in earnest. If you can help, please get in touch. 

Let’s make Year 3 the best one yet! Thank you xxx

Supermarket happiness

Saturday morning is supermarket shop morning. Hubby always says he hates going, but I think he secretly doesn’t mind really. In fact I even think he’ll keep going with me, even when I get my driving license back and he doesn’t need to......

Unlike hubby, I generally don’t mind the Sainsbury’s run. Like most things, if you go with the right attitude then you can have fun.

“Fun at the supermarket?? How on Earth??”, I hear you cry! Well here’s two things that happened today. Two things in one trip!! And I wasn’t even trying lol

First there was a young girl dressed as a witch for Halloween. I heard her tell her dad that she was going to look at the toys and off she went. I carried on shopping and as I reached the top of the aisle I pushed my trolley around the corner....... out of the blue this little witch girl jumped out and grabbed the end of the trolley, shouting ‘GAH!!!’ A small shriek escaped my mouth. She scared me! But the fright soon turned to laughter. Hubby was also laughing heartily from across the aisle. The poor child immediately started apologising, telling me she’d been waiting to jump out on her dad and she thought it was him because we both had Comfort and 3lt of milk in the end of our trolley. 

As we went round the next aisle we heard her telling her dad that she felt really bad for scaring me. I walked back round to her, laughing and telling her not to worry, that she’d made us laugh. We all laughed together and it was great to see a kid just being a kid. I suspect she’ll get a few more laughs when she retells the story of when she scared the stranger in the supermarket. I do hope so!

Then I went to the tills. I saw a lady putting her shopping onto one of the belts. Now all us ladies know that there is a ‘knack’ to this..... a way of putting the shopping on....... an order. I’m right, right?? My husband does not agree. He’s more of a ‘chuck it all on and then throw it into the bags’ type of person. Every week he laughs at my insistence in putting toiletries and large items on first and fruit, bread and soft items on last. 

So I watched this lady and she was taking it very seriously. At one point she even pointed at items as she mentally worked out if it was all stacked correctly. As she finished and the cashier started to ring her items through I chuckled and complimented her on her ‘system’. I told her I’d always prided myself on my skill in this area but that she’d just put me to shame because she was clearly a pro!! She laughed and we shared top tips. It was made funnier by the face on the young guy behind the till, who clearly had no appreciation of the finer skills of food shopping...

Why do I spend time writing about a supermarket trip in a blog? Because it’s a reminder that happiness and laughter is catching. We could’ve plodded round the aisles, annoyed at having to go through the mundane act of shopping, but we chose to engage with others and had a much happier experience as a result.

A simple lesson but an important one :) 

Living with.... xxx