Keeping things chilled....

So what’s been happening? Plenty really.

I’ll start with the medical stuff, but with the important caveat that I’m still incredibly lucky to generally keep pretty well and what problems I have are definitely not beating me....... Medically I finally had my appointment with the Rheumatologist. Another ologist to add to my ever growing list..... An urgent referral took 7 months and I had to go to Antrim because there were no appointments closer to home. The outcome was somewhat uncertain. I may have lupus but it could just be post radiotherapy effects. Either way, my muscles and joints are in almost constant pain and have been for months. Too much or too little activity makes things even worse. It’s about doing just enough...... maybe pushing a tiny bit but not too much.......

Yet again I watched on as three nurses and a doctor all had a go at my veins, trying to get blood. No luck. I’ve to go to my GP Treatment Room on Thursday for them to have a go....... to say I’m dreading it doesn’t even come close. Thankfully I have a very special friend taking me for moral support. Hubby has to work but I had to admit to myself that I need help with this one.... I’m lucky I’ve plenty of shining stars to ask. One of my favourite people in the world, she will help me feel safe and no doubt dry my tears afterwards. In the bigger scheme of things I know that collapsed veins is not the worst I’ve dealt with but being poked with needles is stressful. And it hurts! Especially when it’s then abandoned with no success.

In order to try to ignore the medical stuff, I’ve been enjoying the Easter weekend. Following a bonus lunchtime get together with our son, we enjoyed a few days away in Dublin with my sister and brother in law. We delighted in open top bussing in the unusually hot sunshine, and it was great to spend time together. 

Today I find myself off work but alone..... highly unusual. I should enjoy it, I know. Unfortunately I now find myself quite averse to being on my own. I fear I’ve become a bit needy. Not to be defeated by the feelings of anxiety that I woke up with this morning, I decided to jump into the day. Music turned up loud I had a long, hot shower and took my time getting dressed. Then I took our dog for a short walk. She behaved beautifully for me and it was lovely to get some fresh air........ I never walk her on my own anymore, so I had the added bonus of feeling a bit of added independence in that simple act. 

Next, I tackled the main event of the day....... wardrobe sorting! Cancer treatment is cruel to your weight. I yo-yo’ed from a size 8 to a size 16 but am thankfully, slowly shrinking again now. As a result I gradually found myself with a very full sliderobe with all seasons in all sizes. The time had come......., with the small sizes and the big sizes all boxed away, I can now actually see what clothes I have that fit me! Needless to say I have loads but will no doubt stick to the usual favourites!!

So life goes on. I’m happy and laugh often, I’m fulfilled working 4 days a week and feel I’m still making my own small mark. I’ve loads of fun stuff planned; from a garden party at Buckingham Palace, to rock gigs aplenty, to a romantic getaway in Galway and Athlone. The sun is shining and spring has sprung. Sea bathing season is back and I can properly enjoy my weekly dips again. I’m learning to control any stress and anxiety through reiki and hypnotherapy, as well as time in nature and with my wonderful husband and friends. Life is good and I’m making sure I live it as well as I can with the people I love....... xx

Doing life right.....

Last Sunday I had a proper sea dip for the first time in ages. I’ve been in every month, because if  I don’t do at least dip every month for a year then I don’t  get to be an official Arcadia Bathing Club member. And I’m pig headed and refuse to be beaten! But I’ll admit that the cold weather was seeing me go in up to my chest at most and then run back out...... hey, don’t judge me, I did it!! Last week though the weather was glorious and the conditions perfect. It was bliss. 

This week conditions are somewhat different. It’s very windy and very cold. The sea is choppier and the water breathtakingly cold! But I’m addicted again. I want back the feeling I get from sea bathing in the warmer months. It’s April; the water is bound to be warmer than it seems..... surely?? I want a rerun of last week. So in I go.......

It strikes me now that this morning I did a great single person show of the Wizard of Oz........

I woke up like the heroes in the poppy field. Bleary eyed and tired after a fabulous night seeing Glen Hansard live last night. What a musician! Brilliant night.

As we walked down to the Arcadia I resembled the Tinman...... it’s cold and my joints were screaming. The wind is whistling around me like a tornado ready to lift me up and carry me away. Determined and helped by a great friend, I made my way to the sea with the enthusiasm of Toto. After walking up my yellow brick road beach, I waded in like Scarecrow....... wobbly legged, my breath often catching. I reached chest height sea and stood like the Cowardly Lion..... chattering teeth and scared to get in fully. Summoning up all my strength and encouraged by people around me, I crouched and pushed myself forwards into the water, submerging myself and swimming forwards. Like Dorothy putting on the ruby slippers, I remembered there’s no place like home...... and my home is in the sea. I moved forwards, before turning into my back and floating, being carried along by the waves. It’s cold but I can feel every ache and pain floating away, along with any worries and stresses. 

I don’t stay in too long but it’s enough to leave me feeling amazing. My shoulders and knees, that have been agony for months, are pain free. Mentally I feel blissed out and floaty. I am grinning from ear to ear.  Hubby helps me get changed and we enjoy breakfast baps and cups of hot tea. 

Then it’s home and I stand in a hot shower until I can barely see due to the amount of steam. I get out and dry off quickly, trying to hold onto the warmth of the shower. Without any sense of guilt or feeling lazy, I pull on my comfiest pyjamas, fleecy dressing gown and fluffy socks. 

Now I’m settled on the sofa with more tea. Relaxed, pain free and happy. Hubby dozes beside me and the dog is chilling in her bed....... 

The whole house is content. Perfect Sunday :) 

Living with xx

Sunshine and stability

Oncology review day rolled around again..... As ever, I woke up with a mix of relief at the thought of getting another one over with, combined with nerves....just because. 

It was a long drive down but we arrived early which is always better....... nothing worse than starting off any more stressed. 

When we got there we saw an older couple in the corridor, clearly not too sure where they needed to go.  We stopped to ask them if they needed help. Turned out they were going to the same clinic as us but their appointment was earlier. We started to direct them but decided it was easier just to walk them up there. The RVH is confusing for anyone. A higgeldy piggeldy mix of old and new buildings, joined together with walkways, escalators  and lifts. 

As we guided our new friends, Andrew and Josie, through the warren of corridors, he suddenly stopped walking and leant against a trolley, saying he felt a bit dizzy. My hero of a husband went back to the front doors to get him a wheelchair while I waited with them and told him just to rest and take a moment. He did brilliantly; had the sense to just stop and take a moment, instead of trying to batter on. 

It’s a long walk to Outpatients on the 7th floor of the old building. Plenty of time to stress....... I usually find my anxiety tears start in the miles long car park queue and then bubble up again in the lift.... Thankfully today there was no car park queue (unheard of!) and we were too busy with Andrew and Josie to worry about what was ahead. We delivered them safely and then went for a quick cuppa before my appointment.

In the cafe, hubby spotted a former teacher of his and I recognised his wife as my childhood best friend’s piano teacher when we were kids.   In keeping with the completely over friendly folk we’ve become, we struck up conversation. The connections were made and we laughed at how frequently we’re reminded of how small Northern Ireland is! 

A nice start to the day. Meeting friendly folks and helping people just like we have been helped so many times. Paying it forward....

Thankfully my appt confirmed stability, despite the disasterous scan! Next one in June so I get to enjoy a few months without overthinking the prospect of Infusion Services putting dye into whatever weird and wonderful vein they can find...... *yikes* Plenty of fun times planned between now and then though....Dublin, Belfast, London...... we’ll see them all!

We came home after a bit of retail therapy (when in Rome....) and enjoyed a lovely cup of tea in our back garden. (Yay, Spring at last!!!) Best teabags ever.... Barry’s. I told my friend we’d bought some in Dublin and they made a damned fine cuppa.....In an amazingly thoughtful way she bought me a box for my birthday, along with a lovely seaside mug and some sweets for my desk (because I don’t like her brandy balls or clove rock!)

Plans for Triciafest2 are coming along nicely, we’ve secured some great items for the auction/raffle and the bands are cracking.

Living with...... 

Freckles

Since childhood I’ve had a smattering of freckles across my cheeks and nose. As I kid I hated them....... no amount of calling them ‘angel’s kisses’ could fool me into believing they were cute!! As I got older I just got used to them. I’m Scottish. Like the Irish, we often stereotypically have freckles. It’s in our genes. Also true to my Scottish genes, I have milk bottle white skin in the winter months..... and sometimes in the summer months too, depending on the Northern Irish weather! 

Last weekend we were in Dublin. Although there was a cold breeze and some winter showers, it was very pleasant in the sun. We spent sporadic, short periods, basking in this Spring sunshine; wrapped up against the wind in warm coats, gloves and hats, sitting on sheltered park benches, our faces turned up to the sun, drinking it in. 

On our return home, after a few days I noticed my white winter face was starting to see a few freckles. Probably for the first time ever I realised how healthy they looked. A face that has been touched by the sun. Very far from a tan, but a slight brightening of a previous pallor. Over the past few days others have mentioned what they’ve described as “a brightness” and I’ve enjoyed lots of compliments about how much better I’m looking. How lovely! Spring is springing and I’m ready to embrace it. 

Winter is coming?? No way!! Winter is going and I’m glad to see the back of it!

Living with...... xxx

Good karma

The best things I’ve learned since diagnosis? That there are wonderful people all around. That the horrible ones don’t matter. And that life is for living.

The past week has given me numerous examples of the first and third of these points. On Tuesday I got the train to Belfast for work. On it I had the company of a guy who shared a love of music. He doesn’t get to many gigs now because he has three young children. I told him of our weekend plans to go to Country 2 Country Festival in Dublin. By the time he got off the train he was looking into taking his wife down for tonight’s show, headlined by Chris Stapleton, as a surprise for her birthday! 

On the way home I enjoyed some first class comedy whilst eavesdropping on an older man a few rows in front of me.  Country folk for sure. He was full of stories and I found it impossible not to have a wee giggle..... personally I think his best comedy moment was when he said this; 

“I’ve got three brothers. But we all have different fathers. They talk about your forefathers........ well in my house we actually HAD four fathers......!!!” Classic. He’s wasted on a train, he was better than Mrs Brown’s Boys any day of the week!

On Thursday I met another lovely stranger. I’d been to help my dad with something and was waiting for a taxi home. An older lady was walking up the footpath and a car with trailer pulled up to park. The driver mounted the kerb and almost clipped her, giving her a fright. She stopped to talk to me, giving off about what had happened. I offered to talk to the driver for her and point out what he’d almost done. She declined and apologised, saying she was ‘just crabbit today’ I told her I’d had a fairly challenging morning myself and not to worry about it. I offered her a lift in my taxi but she hadn’t far to go. Then this very sweet lady thanked me for helping improve her day and told me she loved the colours of my woolly hat! Such a short, simple conversation, but yet it lifted both of our days.

Last night we enjoyed our first night at C2C, singing along to ‘Friends in Low Places’ and enjoying the vocal harmonies of the headliner, Lady Antebellum. This morning we had breakfast baps the size of my head and enjoyed a beautiful springtime walk around St Stephens Green. This afternoon I had a hot chocolate in Bewleys that probably met my sugar quota for the month! Now we are chilling in a nice hotel before heading back out for more music. 

#livingwith xx

What a difference a year makes....

This time last year I’d just had my second brain surgery. The awake one. It’s fair to say I’d felt better.......

This year? 

I’m working 4 days a week. I go to gigs. I spend time by the sea.  We even recentry sea swam (ok, ok, I toe dipped..... it was cold!!) with comedian John Bishop.

I’m preparing for this year’s charity gig....

I’m bursting into Spring! I have 2 planned trips to Dublin in the next two months; one for a music festival and one with my sister and brother in law. Then I’ve a trip to London. Now we’re planning a quieter few days away at the end of the summer...... possibly Galway. 

Living with xx

Update, 14/03/2019- 

I’m a numpty. It’s not a year, it’s two!! Time flies!! Xx

Mayor or sofa....?....

I’m on my sofa in my pyjamas. With good reason. I have a stinkin cold. I’ve also had a week of stress due to a family member being unwell. So I’m in self imposed quarantine to give me time to make sure everyone is ok, including myself.......I’ve coughed so much the past few days that I’m totally scunnered. It just won’t stop! 

A short time ago I received a phone call. As I coughed, spluttered and tried to respond, a very pleasant lady told me she was ringing from my local Mayor’s Office to invite me to visit tomorrow afternoon. 

I’d known this call would come at some stage but the date of the event was a surprise because I’d imagine the actual invite is lying in my post tray at work as I sit on my sofa, coughing. 

I tell the story because it’s a great example of how wonderful my friends are. When the Queens Birthday Honours are announced, each Council gets a list of recipients in their area. The address used in my nomination was a Belfast one. For that reason all communications go to Belfast first before being sent on to me. So I didn’t get added to the list for my area. It really made no difference to me and the Belfast Lord Lieutenant who awarded me my medal at Hillsborough Castle was lovely. 

What I was unaware of was that everyone named on the list and living in my area was invited to the local Mayors office for a small event to congratulate them. I was oblivious..... a good friend of mine was not..... She happened to see photos of the event and jumped to defend her friend. She rang the Mayors Office and demanded to know why I hadn’t been invited! Then she rang me, mortified, and apologised profusely for her misunderstanding. She was worried she’d embarrassed me but she hadn’t at all. Once I got past the laughing, I was really touched by her gesture. She saw what she believed to be an injustice against her friend and she took action. I absolutely love her for that! She’s awesome, what a friend!

So thanks to my dear friend I have just been invited to the Mayor’s Office, but thanks to my miserable cold I can’t go. I don’t mind because the important bit of this story is how wonderful my friends are. They never fail to amaze me with their support, love and fierce loyalty. My friends are the best!! Xxx

Blogversary

Tomorrow is my 2 year blogversary. 2 years of writing crap. Hard to believe people ever read it, never mind still read it!! Here’s some 2 year numbers....

• 301 posts
• 71,410 hits
• Most viewed post - ‘I made you a promise’, with 720 hits
• 43% of hits from iPhones (I knew you were all reading in boring meetings!)
• 2 brain surgeries
• 30 radiotherapy sessions
• 2 chemotherapy sessions
• Too many scans to remember
• 4 hospital stays
• 6 months weaning off steroids
• 8 months of sea bathing
• 14 months back at work
• 4 months since I was signed out of palliative care
• 1 medal

Plenty of blogging inspiration! Xx

People and rock and culture

Busy weekend! After a busy week at work. I’m starting to think there are some ne’er-do-wells that having been waiting for me to get back so they can resume their mischief...... ‘let’s have some fun with that Analyst who left for a while......’ So busy, challenging, but keeping me moving. And as my father-in-law likes to tell me “If you’re marching, you’re not fighting.” True.

Yesterday we went to Belfast for a gig. Live music is therapy for me. I love to sing along, have a wee dance and enjoy good times with friends. Music makes me feel good, especially when it’s live.

Last night’s gig had potential to be an odd one.... a band that had split up amid much drama and I knew there’d be some attendees that I really wouldn’t want to see. I felt slightly anxious about it and almost didn’t go but we’d paid for tickets and an Airbnb..... plus I refuse to be intimidated by a few high drama types. I knew there’d be enough true friends there to make it fun and I was right. There were friends from Scotland and friends from all over NI. It was great to catch up and enjoy the band.

We stayed up in Belfast last night. If there’s one thing I love about Airbnb’s it’s the people you meet...... This morning we met a fellow guest. Mike is from England and over as part of his work with the local Buddhist community.  

As far as religions go, I’ve always felt Buddhism to be one of my favourites...... around 12 years ago we were fortunate enough to have a family holiday in Thailand and found the Buddhist people to be gentle and kind. They appear to have a natural peace that I’ve always admired. The past two years I have found myself becoming more involved in calming my mind through what are essentially Buddhist principles; time in nature, receiving and paying forward kindness, reiki, hypnotherapy, meditation..... these things help keep me moving forwards and stop me becoming hyper and spinning off into an unhealthy and anxiety driven buzz of constant activity. They allow me space to regroup and restore my energy stocks. So meeting a Buddhist and hearing more felt very much like karma. I enjoyed talking to him. With my permission (he was very careful not to ‘preach’ or force opinion on me), he taught me a chant; ‘Nam myoho renge kyo’  if my understanding is correct then this is essentially the principle that we each have the ability within us to overcome any difficulty we experience in life. I like that concept. And I believe it. Mike talked about getting back what you give out..... something that has been said to me before. And again, something I believe. 

After this we went to St George’s Market for king sized breakfast baps! For those reading this who aren’t local to NI, this is a Belfast Bap (a massive bread roll, baked so that it’s crusty on the outside and really soft and fresh in the middle...... like the bread version of an armadillo....!!), filled with sausages, bacon and a fried egg. Some people also add mushrooms, onions and sometimes even black pudding. I stick to some tomato ketchup (or ‘red sauce’ as we like to simplify it to over here!)  So, anyway, St George’s and breakfast baps. Plus a cup of tea. Perfect. We met more friends and, as ever, I made some new ones while hubby was off buying the full fry in a roll! One friend showed me a photo she’d just taken of her and Jonathan Ross! Apparently he was in the market but we didn’t see him. Probably fortunate as I’d have chatted the hind leg off him (another NIrish-ism...... just means I talk a lot).  As we got the car from a nearby multi story we heard someone singing ‘Hey Jude’ on the level just below. Unable to resist, we joined in and then shared laughter with these strangers......you get what you give.....

From St. George’s we moved on for a bit of culture and visited the Ulster Museum. I’d seen on the news that they had an exhibition of Leonardo da Vinci sketches and I wanted to see them. Hubby, as ever, went along with my every wish! He got to see the Game of Thrones tapestry...... like our very own Bayeux  Tapestry without the historical accuracy. I’ve never seen an episode so I wandered quickly through this bit and concentrated on da Vinci. I got told off for taking a photo with the flash I hadn’t even realised was on, and dutifully promised not to flash in the museum again..... ;) 

Some photos from the museum. When I picture my brain tumour, I usually see a dark cloud or a picture that someone has scribbled all over. The second photo was like seeing a da Vinci sketch of it.

Great weekend. Lots of work plans this week and then a long weekend to build myself up before lots more exciting trips over the next few months. 

#livingwith

#notmissingathing

Xx

Tears over trainers

Today I cried proper tears....... over two pairs of grotty old trainers.....  Hubby had taken a notion to tidy and clear out the front bedroom. You know the one. The third bedroom in a house with only one child. The bedroom that’s too small for a double bed. In the house with no garage. The storeroom. The dumping ground. The mess! 

Fair play to him for getting stuck into it. Though in fairness it’s not my lifetime stock of old work clothes and cables for every electronic item we’ve ever owned! Though I’ll admit some of the crap in that room is mine.... 

“Do you want to keep these?” He asked me, whilst holding up two pairs of stinking, grotty trainers. “Yes. I do” I replied curtly, without turning around, as I stood in the kitchen doing the dishes. “Are you sure? You haven’t worn them in ages”. I sharply responded, “I haven’t worn them for 2 years because I’ve been sick. I couldn’t fit them on my feet because they were so swollen from steroids.” Sensing I wasn’t happy, hubby did the sensible thing and exited stage left, smelly trainers in hand. 

What was wrong with me? Why such a melodramatic reaction? Honestly, I heard something he didn’t say. I heard “May as well throw out the trainers you used to wear to go running. God knows, you’ll never do that again”. That’s not what he said or what he meant but it’s what I heard. Thankfully I realised pretty quickly that’s what I’d done..... And my husband is a star who I often think can read my mind these days.  He gave me a bit of time and then came back in. He approached slowly and carefully, without making eye contact..... I apologised and explained my reaction, being careful to make it clear that I knew I’d responded to something he hadn’t actually said. He totally got it. In fact, he’d already caught onto what had happened before he’d come back into the room.

I kept the smelly old trainers. I’m not stuck in the past, but I’m not ready to chuck them just yet. Truth be told, I didn’t stop running because of my brain tumour. I stopped running because I was crap at it!  Maybe I’ll wear them to walk the dog. Maybe I’ll do the odd fun run in the future. Maybe I’ll dump them another day when I’m in a better mood. Whatever, it doesn’t matter. No rush.

More importantly, I got a letter last week. Seems my disastrous ‘no veins for the dye’ scan was good enough and there’s stability. This is far more important than stinking old trainers!! xxx

Planes, trains and brains

So I’ve been cleared for take off by both oncology and neurology. This is important news because I got my garden party date for Buckingham Palace and I didn’t fancy trying to get there by boat and train or hubby having to drive. I may ask the pilot to do a Top Gun style fly past the tower at Gatwick when we arrive to celebrate haha!

I am currently sitting on the train home from Belfast after another venture out into the wider work world. Confidence is building so I’ll need to keep myself reigned in and not get too carried away!

On Saturday morning I spent 3.5 hours with my sister at a qigong workshop. I’d describe it as what I’d imagine tai chi to be like, but with added meditation. I thoroughly enjoyed it and left it with a notable reduction in muscle pains. I’m starting weekly classes tomorrow evening and am hoping for great things. Not content to just enjoy the class without being disruptive, I took the giggles during it. There’s a move we were taught that’s called ‘bear walk’ though our teacher told us some call it ‘penguin walk’ because you look a bit like a penguin when doing it. I got an imagine in my head of the soldiers in Toy Story and had to resist the urge to shout in a bad American accent “We’ve got a board game people. A board game!” 

These are the things that now entertain me. How painfully dull I’ve become..... Although I was at a rock gig on Saturday so there’s still a smattering of cool in there somewhere I guess.  The night out was partially in celebration of my 2 year seizureversary. Amazing to think it’s been that long. Unbelievably, in a club filled with over 100 people, a girl I’d never met before chose to sit beside me and we got chatting. We introduced ourselves to each other and shared a few laughs. She had a very trendy haircut; it was shaved really short at one side and longer at the other, with the longer bit dyed purple. At one point she went to the toilet and on her return I saw a familiar shaped scar on the shaved side of her head. We chatted again and eventually I gently asked her about her scar. She said “yeah, I had a brain tumour!” Of all the seats, in all the venues, we end up sitting beside each other...... yet more mad serendipity! We shared a love of live music and a love of life. Cool :) 

Broken veins and sleep poetry

It was a busy week. Between train journeys and work stuff, I also organised our trip to London for a royal garden party as part of my BEM award, plus I set the ball in motion for another charity gig this year.

All fun and good times, plus a long weekend off to look forward to. Off on Friday and tomorrow. What could possibly go wrong??

My veins. That’s what could go wrong. And they did. On Friday we went to Belfast for me to have a scan. These scans are MRI and involve dye being put into a vein. My veins have been poked and prodded for 2 years. They weren’t happy at the start but have become progressively worse. Gone digging...... and digging...... and digging some more. Not even a doctor with an ultrasound machine could get a needle into a vein. In the end they had to give up. Not their fault but hugely frustrating for me. Not to mention sore. I’m like a pin cushion although I’ve had worse bruises at other times. The rest of the scan was done so I’m hoping it’s enough for them to see what they need (and that it’s more improvement!) Unfortunately there’s a chance I’ll get called back and someone from Infusion Services will have to get involved. 

I’m persuading myself it doesn’t matter. That I’d know if things had got worse. I’m trying to have faith in my body’s ability to keep healing. 

There’s little doubt it caused me a wee dip though. It wasn’t a nice experience. Although the doctor and nurses were brilliant, I’m embarrassed to say there were tears and I left in a foul mood and totally fed up.

We went to walk in my friend’s beautiful garden on the way home and the next day we went for a quick beach walk in Castlerock. I went to bed early on both Friday night and Saturday night. 

Last night I woke up with a start as hubby was coming into bed. “I wrote a poem!” I exclaimed. “I wrote a poem in my sleep! Quick, get me a pen and a bit of paper. I have to write it down before I forget.” This is what I wrote;

Granda used to wear his old boots every day

He’d wear them for sowing

He’d wear them for hoeing

He’d wear them planting

He’d wear them for picking

But one day they just stood on the step

Gathering dirt in the wind and the wet

“Why does Granda not wear his old boots anymore?” asked Tom

He knew in his heart that something was wrong

Granny wiped a tear from her eye

“He doesn’t need his old boots anymore.

Where he has gone, granda can fly.”

I originally called it ‘Why Does Granda not Wear his old Boots Anymore’, but hubby suggested that was a bit wordy so I’ve gone with just ‘Granda’s Boots’. I told my sister and also a friend about it. How tragic is that?, I asked. Not only am I writing poetry in my sleep, but it’s horribly melancholy poetry. Where has that come from?? I cried when I read it to hubby, but then we laughed as we competed against each other in a limerick battle! Thank goodness for my husband. He’s the one who dries my tears, even when they make no sense. 

Today we didn’t sea bathe as it was too windy and choppy. We went down and got sea air though and it was just what I needed.

Then we came home and binged on rubbish films....... Cocktail followed by Footloose. I treated hubby to a bit of a flash moblet (it can’t be a full flash mob if there’s only one of you!) but I mistimed it slightly...... Picture the scene...... I thought it was close to the big end dance scene so I subtly got up to let the dog out. I waited, stretching my aching muscles and hiding my true plans...... unfortunately it was bit further away from the scene than I remembered. Hubby glanced at me every so often, before telling me he knew exactly what I was planning and that I was way too early! Doh!! 

Another day off tomorrow. I’ll have a wee sing and a dance when I get up. I’ll sing loudly in the shower. Then I think I’ll go to the sea with hubby again. Breathe in the air. Remind myself I’m still doing ok. Xxx

Loving life

Today was a big day of little things for me. Firstly I went to Belfast on the train on my own. This is something I really wouldn’t have felt confident doing until now. 

The reason I went was because I’d been asked to talk through a report I’d written to a group of representatives from partner agencies. This is something I used to confidently do on a very regular basis, but it’s been a long time. I cover up pretty well I think, but there’s no doubt that my confidence levels are lower than they used to be. 

It turned out I made the right decision. I’m not sure my presentation at the meeting was as succinct as I’d have liked it to be. It was a bit rambling but the guy who invited me seemed happy enough and I don’t think it was awful. 

After the meeting I ate lunch with some close colleagues and friends. I enjoyed catching up. It was lovely and also all helps make me feel like part of a team again.

I’ve no idea why I was nervous getting a train on my own...... I’m never alone for long! On the way down I had a good chat with Betsy from Ballymena, and on the way home I met a delightful lady who has done incredible amounts of charity and volunteer work. She told me something that was said to her years ago. She now writes it at the front of her diary every year;

“Do you love life?

Do not waste time

For that is the stuff life is made of.”

Wonderful. You can probably see why we bonded! This 79 year old former nurse was wonderfully positive and inspirational and we shared stories and laughed together. I got off that train feeling so good that I even got the town bus home rather than a taxi.

I’m wrecked after a long day, but I’ve taken a few more leaps forward in the career part of my life. I’m not wasting time....... 

Living with xxx

Goodbye 2018, hello 2019

So here we are, into another year. In some ways the past 2 years have been the slowest of my life, in other ways they’ve been the quickest. New Year is time to reflect and look forward......

Reflections. What have I achieved (with help) in 2018?

• Survival after being given 4 days to live due to a nasty anti seizure medication poisoning me.
• Continued improvement shown in scan results.
• A successful return to work.
• Lots of quality time with family and friends, including getting back out to music gigs.
• Helping arrange my sister’s wedding and watching her marry a wonderful man.
• The first triciafest gig and subsequent raising of almost £9,000 for Macmillan Cancer Care.
• Being awarded a British Empire Medal.
• Ditching steroids.... it took 6 months but I got there in the end.
• Taking up sea bathing.
• A short holiday in England and Scotland, and numerous other nights away at gigs and with my sister and brother in law.
• Three local media articles raising awareness of brain tumours.
• Preparation and presentation of a TedxTalk.
• Speaking out and helping get some change and increased support within local Dept of Health for brain tumour patients.
• Continuing to get up after minor blips. (Though in fairness that credit goes largely to my support team). 

Looking forward to in 2019?

• Loads of music gigs.
• Loads of good times with family and friends.
• Striding forward at work and making a difference.
• Going to a Garden Party at Buckingham Palace. 
• Achieving one year of monthly sea swims and becoming an official Arcadia Bathing Club member.
• Beating cancer........ why not aim for the top??

Overall 2018 was a good year, interspersed with some moments of terror and sadness. If 2019 goes much the same then that’ll be enough, but I still stand by what I’ve said since the start; “I’m not saying I’m going to be a miracle, but I haven’t ruled it out!” 

Right, off to make more special memories. Living with..... Xxx

Christmas is.....

Christmas is a time for family and friends.

Christmas is knowing your son is back in his own bed.

Christmas is slow dancing with your husband in the kitchen while dinner cooks.

Christmas is FaceTiming family in America and admiring the view of the snow capped mountains from their balcony.

Christmas is getting together with extended family and seeing children’s faces lit up with excitement.

Christmas is afternoons snuggled up on the sofa, watching classic movies like Elf, Wizard of Oz and Mary Poppins.

Christmas is laughing at old favourites like Wayne’s World and Bill and Ted.

Christmas is walks at the shore, wrapped up and cuddled into the best husband in the world.

Christmas is meeting up with old friends and reminiscing about childhood fun times.

Christmas is exchanging gifts and enjoying the smiles on peoples’ faces.

Christmas is time off work.

Christmas is time on the Riverbank, with no need to visit the Wide World for a few days at least.

Christmas is for thanking friends that have stuck by you through difficult times.

Christmas is when Caledonia is sung specially to you.

Christmas is eating far too much.

Christmas is not caring that you’ve eaten far too much.

Merry Christmas. Here’s to 2019. Next scan on 11th January...... let’s keep kicking this thing’s ass!!

Xxx

Caledonia

“I don’t know if you can see

The changes that have come over me”

Caledonia by Dougie McClean

Last night we went out. Pat McManus is a local rock genius. He formed Mamas Boys with his brothers in Fermanagh at a very young age, and has been rocking out ever since. A hugely talented man, he’s a bit like the Eddie Van Halen of Derrylin...... except he’s better because he plays the fiddle too. There are clearly some blues influences and he smiles literally the whole time he’s on stage! 

Last night we went to see him play with his band, simply called The Pat McManus Band because nothing else needs said. He was very generous with auction prizes for Triciafest and I wanted to thank him personally. Not long after we arrived at the Diamond Rock Club, the guy who runs it and who’s a good friend, introduced me to Pat’s wife. She’s beautiful inside and out. Warm and sweet, I liked her instantly.

We started to watch and listen to the band and were loving them. Interspersed with his excellent own songs were covers of classics like Hendrix’s ‘All Along the Watchtower’ and Thin Lizzy’s ‘Don’t Believe a Word’. We were thoroughly enjoying ourselves. Imagine the wonderful surprise when he said “We’re going to play this one for Tricia.....” What?? I don’t know him, why would he want to play a song for me? Then he launched into the most beautiful and perfect song........ 

‘Caledonia’ by Dougie McClean. A Scottish anthem. What better choice for a wee Glaswegian?? Cue the tears...... How could I not?? A beautiful song made even more powerful through being given a rock twist. Loved it. I didn’t get footage of it because I was too busy enjoying it but I’m sure somebody did so I’ll keep an eye on YouTube. It’s on his new album, “Tattooed In Blue”, along with 11 other stonkers! I’m particularly loving ‘Mama Don’t Do It’.

Don’t you love it when hugely talented local people have enjoyed great success but stay true to their roots? Amazingly talented yet sweet and kind. Married to a beautiful and sweet lady. They say that Dave Grohl is the nicest man in rock. I’m sure he’s lovely but Pat McManus wins that award for me!  Xxx

Time.....

A year can change everything. Christmas is just days away. I feel like it’s kind of crept up on me this year. In fact I find it pretty difficult to believe that 2018 has almost passed. In the past week a few people have commented on how much better I look compared to this time last year. Chatting to my husband about that, we looked back at some photos from last year. I was horrified by how ill I look in them. I often complain about the weight I’ve gained through the long term use of steroid medication, but I can tell you without doubt that ‘slightly chubby me’ is a far better look than ‘heroin chic me’! The past few months have led to an levelling out of sorts.... there’s some ‘puppy fat’ to lose but I’m not bloated and uncomfortable like I was when I was on the steroid medication.

Christmas used to be my favourite time of year. Now it brings back some pretty nasty memories. This time last year I was being slowly poisoned...... I just didn’t know it until I literally fell over in January. The year before I was weeks away from the biggest shock of my life and everything changing forever. What few memories I have of the last two Christmas’s aren’t always the most pleasant, though I honestly hardly remember anything. I’ve absolutely zero memory of Christmas Day last year and was weeks away from hospitalisation and my poor family being told I had 4-5 days to live. The previous year was much the same.

Yet here I still am. I’m not 100% by any stretch of the imagination, but considering my experiences I think I’m doing pretty well. I work 4 days a week and feel I’m contributing something. I have gained a hugely increased love and appreciation of life and the special people in mine, a British Empire Medal, countless new friends, and strength. I’ve lost some angry bits of tumour, a bit of the steroid weight, some negative people from my life  and the constant feeling of insecurity that I had the last two Christmas’s. 

Importantly, with the help of family and friends, I've helped raise money to make things a bit easier for local cancer patients, I’ve tried to give some hope to others going through a tough time, and I’ve hopefully done my tiny bit to help aid change within the Health Service. The detail of the last bit isn’t suitable for blogging, but I’ve been vocal (‘not like you’ I hear you cry!) and there have been a few small changes made that should improve things for brain tumour patients. 

One person can’t fix the Health Service. Even a group of like minded people can’t do that. But if everyone does their wee bit then, through time, things should improve. Stand up and be counted. Speak up if things have gone wrong. Be strong and hold them to account. Just as important, praise the ones that get it right. Sing their praises, fundraise, whatever you can do to ensure they stay motivated through a lack of staff, poor pay and budget cuts. The system might be broken and we can’t rely on politicians to help, but we can each make our own choices, and speak out to help get changes made.

This time last year I was horribly ill and things could’ve gone either way. This year I’ve been taking part in Santa Splash’s in the freezing cold Atlantic and enjoying quality time with those I hold most dear. A year can change everything. Xxx

Light up, light up

We had plans for this weekend and I’m damned sure sore muscles weren’t standing in my way!! I was just right. We’ve spent the past few days enjoying quality time together, singing and dancing and meeting the most lovely people.

It started on Friday. We headed down to Dublin to go to a gig. Country band Midland are so cheesy they’re awesome! Fantastic night, made even better by a chance meeting with another couple who were full of chat and fun. Plus we stayed at an Airbnb run by a wonderful couple from Brazil. She used to be a professional volleyball player and was gorgeous, about 6 foot tall and a figure to die for! On top of that she was a complete sweetheart, as was her partner. We left with hugs, feeling like we’d stayed with friends. 

Yesterday we headed from Dublin up to Belfast. Another Airbnb, another success. Absolutely beautiful house. Last night we went to see Snow Patrol. They were brilliant and more new friends were made. The young couple sitting beside us were lovely and we enjoyed their company. The night was only marred by a fairly vicious fight that broke out in the standing area right in front of our seats. I’ll admit to being pretty scared by it...... it was violent and in amongst a crowd of people very near the front of the arena. I’m sure there’s a few people who woke up with fist and shoe prints on them today...... unfortunately some may have been innocent bystanders. Over 20 years ago I was injured in a similar fashion.... standing at a bar, watching a band, fight broke out beside me and I didn’t move fast enough.... a few minutes later I’m lying on the floor with a broken nose, after being used as a human shield by one of the offending parties and subsequently kicked in the face by the other. I experienced ongoing sinus problems from then on and ended up having surgery...... part of the reason why I dismissed the terrible headaches caused by my brain tumour.....I thought they were sinus headaches. So I was very nervous when the fight kicked off at the gig..... All the half drunk drinks sitting on top of the divider between seated and standing were coped over us and I was expecting a person to follow them...... either someone jumping over to get away from the melee, or someone being thrown over.... thankfully that didn’t happen and those involved were removed from the venue. 

Of all the gigs I’ve been to, I would never have thought Snow Patrol would be the one where I’d witness a pretty nasty fight. Slipknot  was safer!! Thankfully the band were great so the idiots didn’t ruin it for us. Hopefully there weren’t too many people who got caught like I did all those years ago and didn’t move fast enough. I did see at least one young member of security getting a significant thumping. 

After another good night’s sleep, we got up this morning and slowly worked our way home via St George’s Market and the shores of Belfast Lough. 

At St George’s we met a lovely Spanish family who were visiting their daughter who’s working here. The market was buzzing and full of people Christmas shopping. 

Home early afternoon, content and having had a great weekend. On the road up I had a sudden premonition..... I turned to hubby and said “Wait til you see. We’ll go home to a letter with an appointment date for January.” Sure enough...... waiting for me was a letter with my next scan date. This is a good thing because it provides reassurance. I don’t believe things have deteriorated and am even cautiously hopeful of further improvement..... I’m enjoying life and I’m carried through the hard bits by family and friends, especially my amazing hubby. I’ll admit to shedding a few tears at some of music over the weekend. But overwhelmed in a good way.  Living with...... xxx

“What if it hurts like hell

Then it'll hurt like hell

Come on over

Come on over here”

What if this is all the love you ever get 

by Snow Patrol 

Take a look at me now......

Yet another totally random happenstance......

A while ago I was interviewed by Local Women magazine. 

Completely unrelated, I am currently reading Phil Collins’ autobiography. The night before last I was reading about how he had originally thought Against All Odds wasn’t destined to be any more than s B Side. It went on to become his first US #1.......

Imagine my surprise when this evening I see the cover of the Local Women magazine which will be in local shops tomorrow.......

I’m very far from singing songs about heartbreak, but the title and some of the lyrics still seem fitting...

“Take a good look at me now...”

Phil Collins

A little bit country....

From a very young age I used to spend hours listening to any music I could find. Old tapes and LPs, whatever I could get my hands on. My tastes were eclectic...... the ones that stick out from my early years include Simon & Garfunkel’s Bridge over Troubled Water, ABBA’s Super Trouper, Cliff Richard’s Greatest Hits (the double cassette with his profile made out of a gold record), Barbra Streisand’s Guilty and Neil Diamond’s Jazz Singer. 

As I hit school age it was all about the Top 40 hits. Sunday night’s spent with the Charts on Radio 1, a tape deck and a quick finger to get a recording of the song but not the DJ. Diana Ross’s Chain Reaction still makes me think of my P7 school trip to London (on the bus with a Walkman and the words in Smash Hits), Michael Jackson’s Thriller album, Madonna’s True Blue.

Teenage years brought full on rock rebellion. Sneaking out to gigs on the Street Legal bus, lying about where I was going and who I was going with. My friend and I used to nick her brother’s tapes; Kiss, Ozzy and Def Leppard. Then I went heavy; Metallica, Slayer, Megadeth. 

Throughout all of this has been a slight undercurrent of country...... Kenny Rogers and John Denver in the early days, Southern rock bands later; Lynyrd Skynyrd, Jon Bon’s country phase (heart!), The Eagles and, more recently, Blackberry Smoke and Cadillac Three.

Since I was diagnosed I’ve found my inner country queen has become even more prominent. My wee head can be quite sensitive so I sometimes have to watch loud bands, particularly those with heavy drums and bass. A bit of country can allow an easy to sing chorus, good harmonies and maybe even a wee dance. 

And so find myself looking at my diary and seeing an interesting mix of gigs coming up. Alongside Bryan Adams, Foo Fighters, Toby Jepson and Quireboys, there’s Midland (they’re so Country I’m not sure if it’s a joke. The Steel Panther of country music??), and Country to Country (a three day country fest, with Chris Stapleton, Lady Antebellum and Keith Urban). 

“I’m a little bit country

I’m a little bit rock n roll

I’m a little bit Memphis

A little bit Nashville”

Donny and Marie Osmond...???

Christmas weekend!

Christmas comes but once a year....... unless you’re in our family of course! We have a family tradition; we get together before Christmas Day for Robinson Christmas. It’s simply a family get together where we go for a meal and we exchange gifts....... much like actual Christmas, except earlier. This weekend was Robinson Christmas and it’s been lovely. I’ve enjoyed time with my husband, son, sister, brother in law and dad.  Some of my favourite people in the world. Family are so important. I value mine immensely. This year my son even took weeks to make flavoured vodka and whisky for his aunt and uncle. He didn’t use a still, don’t worry. Not moonshine as much as a kind of alcoholic marinade! 

Unfortunately my muscle and joint aches continue, but I’m trying desperately not to let it annoy me. Im sure it’s going to pass but I wish my feet and ankles weren’t quite so hobbit-like!  It’s not stopping me though..... well maybe a tiny bit, but very little. Finally finishing the steroids is starting to give me my cheekbones back but it’s yet another change for my poor body to deal with.

Not to be outdone, I’m still working and enjoying life. Our gig diary continues to fill up, with plenty to enjoy during the rest of 2018 and the start of 2019. Music makes me happy and I get to enjoy gigs with family and friends so I see it all as part of my healing process.  The NI rock music community is a small and an incredibly loyal one. Like family, friends and work colleagues, I have gig buddies that have my back and are always there to help and make me smile.  Sometimes these friend circles combine and that can warm my heart. Just yesterday a friend, who is also one of my former work line managers, sent me a photo of him at a gig, with a rock band guy friend of ours...... he even had on a triciafest t-shirt...... at a festival in Scotland!  That made me smile. What a legend.

So what’s next? Well, I’m hoping my wee body will recover from the steroid abuse by the end of the year. Then I’m hoping my next scan in January shows continued improvement. Then it’s just a case of keeping things steady..... Living life..... xx

43 going on 80, via 21

My muscles and joints continue to cause me significant problems. It’s now been 6 weeks of significant discomfort at best and severe pain at worst. I’ve been referred to a rheumatologist (another Consultant to add to my collection) but the waiting list for an emergency referral is 7 months....... So I guess I need to just keep doing what I’m doing and hopefully helping myself as much as I can. 

The Physio did give me a rather nifty looking rolator for days I want to go for a longer walk.  I test drove it in Ballymena on Saturday and it was great. Then I took it for another spin on Sunday, but I’ve discovered it’s not great on paths that aren’t completely smooth. If it’s even a little bumpy it can be a bit like pushing a pneumatic drill! Plus negotiating slopes, both coming down and going up, is going to take a bit more practice. The seat is ace though. Perfect for a wee rest when needed. Plus the shopping basket underneath is as handy as anything......No requirement to hurt weary arms or load up hubby like a pack mule! Friends have suggested Christmas decor, including fairy lights, so watch this space.....!

So I now officially kind of look like I’m in my 80s..... Do I care? Honestly, a tiny bit maybe, but not enough to prevent me from using it if it helps. It will allow me to enjoy longer walks in the fresh air which can only be good!

Last night was spent watching Mumford & Sons live. Fantastic! For a fairly plain, slightly chubby guy, Mr Mumford is a rock god!! Maybe there’s hope for me yet! Last night he played guitar, drums and piano. He was note perfect with a tone like velvet and had the audience in the palm of his hand. He even left the stage and took a walk up through the crowd and up into the seats. There’s not too many do that nowadays! It was a late night for me and an uncomfortable one without too much sleep. 6.15am comes early, but I’ve still managed to complete a fairly productive day at work.

The gig diary is now starting to fill up nicely, right into next year. Hopefully my stamina will improve....... I’m pretty confident it will, not that I’ll let it stop me anyway! Music is good for my emotional mind and that’s just as important as any physical therapy.  These days of dust will soon be blown away by a new sun....... Bring it on!! Xx

“Well, I came home

Like a stone

And I fell heavy into your arms

These days of dust

Which we've known

Will blow away with this new sun”

I Will Wait, Mumford and Sons

I wish that.....

“I wish that

I knew what I know now

When I was younger”

Ooh la la by The Faces

I just heard this song and it got me thinking. Do I? Do I wish I’d known what was ahead and the lessons a twist of fate has taught me? 

I was once basically asked this at a promotion interview. It went something like this......

Interviewer: If you could go back to your first day as a Trainee Analyst what would you do differently and why?

Me: *looks confused and tries to think* Well, that depends. Am I going back knowing what I know now? Or am I going back the same way I was then? Hmmm, that’s a tough one. If I go back the way I was then, I wouldn’t change anything because I wouldn’t know any different...... However, I can’t go back knowing what I know now, because if I hadn’t done things the way I did them then I wouldn’t  have learnt anything and wouldn’t know there was a better way. Erm. I’m confused. What exactly do you mean??

Interviewer: *clears his throat* Uh, yes, I see what you’re saying. That was a stupid question. Ignore I asked it. Let’s move on.

Somehow, I managed to get the promotion on that occasion! I still feel the same way about hindsight. Would I have lived my life differently prior to diagnosis if I’d known what was ahead? No, I don’t think I would. I don’t think I ever lived a terrible life to begin with. And lessons come through experience. You have to mess up or have something traumatic happen to truly make you who you are. 

In conclusion, I’m glad I didn’t know what I know now when I was younger. I think.... Xx

Still sore but not stopping....

“Don’t stop me now, I’m having such a good time, I’m having a ball!” 

Queen

My muscles remain agony. The pain moves around a bit, but it’s not letting up. I refuse to let it stop me but am desperately hoping it’s temporary. But that’s enough of that. A friend of mine told me the other night that his wife and I read this blog and that I had a good way with words but that I complain a lot..... Probably a fair comment I know. It’s my way of getting it out, though I always try to deliver the truth but also give a positive slant. So let’s remember my good scan results and the fact that I’m no longer in palliative care. That more than balances out the temporary muscle pains.

The past few weeks have brought some wonderful experiences. My Wind in the Willows dress got another run out when we went to a beautiful wedding. It was in Letterkenny and started a wee run of fun times! 

First my sister and brother in law visited for a weekend, then we had 2 nights away going to gigs in Belfast and Dublin. 

We’ve had lots of time off work and have spent time with great people........Not to mention with each other, which is always lovely! 

Now we’re heading back towards reality again..... today I heard from a friend who is in hospital with a bleed to the brain and possible spinal leak. I was devastated but know he’ll be ok. He’s been a steady and consistent friend to me throughout everything. When people I knew better and expected more of got bored and I dropped off their radar, this friend never wavered in his support. I’m fortunate enough to have a few friends like him. The ones that are always there. Plus my husband and sister and brother in law provide a crutch that I’d be completely lost without. 

Next week brings normal and mundane stuff like work, blood tests and a haircut. But it also brings another hypnotherapy session, lunches and another gig at the weekend. My life remains very changeable, with some bad but loads of good. I plan to spend the run up to Christmas in the company of good people who genuinely care. I have a couple more gigs and a few fun times planned with family and friends. Don’t stop me now! Xxx

Someone tell my muscles!

Can someone please have a chat with my muscles?? Tell them that my scan results are really good. So good in fact that the charity that provides me with palliative care support on behalf of the Belfast Trust have signed me off! Unfortunately I still have an incurable brain tumour, but it’s behaving itself and I’m no longer deemed to be at immediate risk. I didn’t even know this was a possibility. I thought I was on one path and it was only the time frame that could vary. That’s probably still true, but it looks like that time frame is potentially going to be a lot longer than was thought. 

Fantastic news! The best we could ever have hoped for. Now, in order to enjoy it fully, I just need to find a way of getting the message to my poor joints..... I remain in agony! Across my neck, my shoulders, my arms, my back, my legs and even my hands and feet. The pains move around but overall it’s just constantly uncomfortable. Not only am I plodding about like the Tinman, I also get shooting electric shock type pains. Night time is the worst. 

I refuse to let it stop me. I may have to learn to live with pains like this for a while at least. As ever I have two choices; lie down to it or stand up and fight. I don’t generally do the former.... 

Hopefully we’ll get some answers soon but in the meantime I’m gently working through. Nothing has stayed the same on this journey. This won’t last either. 

So I tentatively celebrate the fact that my brain tumour is happier with me and no longer trying to assert its authority. I’m getting on with life as I have done from the start. I am more grateful than ever for the amazing family and friends I have around me. Those that have stuck with me and shown me unwavering support and love. You’re the best! Xxx

Yaaayyy but ooowwww

I’m in agony. Everyone’s a bit noncommittal about the cause of my muscle pains. It could be medication induced lupus, it could be muscle wastage caused by so long on the steroids, it could be a virus, it could be something else. So frustrating. Especially because it’s knocked me off my feet a bit. I’ve spent the week at home, mostly moping. I’m in pain and am tired from a lack of sleep caused by the constant muscle spasms. 

Ironically this continues at a time when I should be dancing! Yesterday I had appointments with both oncology and neurology.  The news from oncology was particularly emotive;  

“your scan shows the improvement seen in the previous one has continued”..... at which point the tears started as usual! Best news ever!! 

I’m desperately trying to focus on that news and not let it be ruined by sore muscles and an ugly face rash...... those things don’t matter. They are a short term discomfort. ‘Continued improvement’ has potential to add years onto my life. Hardly a comparison...... 

My sister sent me a lucky t-shirt. I wore it yesterday and it’s currently in the washing machine...... all ready to be worn again, hopefully with the same results! Xxx

No going back.....

“Been down one time, 

been down two times,

I’m never going back again.”

Never Going Back by Fleetwood Mac 

A visit to the GP yesterday. He believes I may have a virus that could be affecting me worse due to finishing the steroids.  Bloods show slight inflammation but nothing to panic about. To be redone in 3 weeks time. 

Good news is no-one has suggested I go back on the steroids! In fairness they probably wouldn’t dare, because they know the response they’d get! I still have very sore joints and a rash on my face, but it’s improving. I’ll put up with the short term pain for the long term gain. 

I’ve stayed off work until I feel a bit stronger and am being supported by friends while hubby is at work during the day. On Thursday I’ve got appointments with both Oncology  and Neurology...... one in Belfast and one in Coleraine, but thankfully enough time between them to get from one to the other. A day to look forward to...... I’m deep breathing and refusing to get anxious about it.  Hubby is holding me close and keeping me calm. I already know my last scan results have been classed as ‘stable’ so that means they’re similar to the previous which showed an improvement. I’ll take it!

I’m also having my first hypnotherapy session this afternoon. I’m looking forward to it. The guy doing it is a friend so hopefully he won’t leave me crawling round the house, barking like a dog!! I’m much more open to alternative therapies now. Not the cynic I used to be. Going to reiki and doing my sea bathing has shown me what a huge difference things like that can make and I intend to keep them up. I’m completely sold on a more hippy-type approach. Though I will NOT be taking cannabis oil or other potions. Wellbeing and mindfulness is a big yes, replacing scientifically proven medication with untested herbal stuff is a big no.  Though I still make sure to question every pill the medical people try to make me take and have refused many of them, including diazepam (at least 5 times) and HRT (as if my hormones weren’t crazy enough due to the steroids!)

As for steroids? Never going back again. Xxx

And Dexy’s special prize......

Now that we’ve split up Dexy rewarded me with a special prize...... a trip to A&E. Sad face. 

The mad face rash didn’t improve and then I woke up in the early hours of this morning with sharp pains across the top of my back and down my arm. Combine that with a pounding heart, tightness across my chest, and mild tremors and you can possibly understand why I began to panic I might be on the verge of a heart attack. 

I tried to breathe deeply but that caused pain too. I tried to get comfortable and go back to sleep but I kept getting the sharp pains when I moved the wrong way. The only way to stop it was to lie in a position it would’ve been completely impossible to sleep in.

I tried my best but by the time 6am came I was in agony, exhausted, and terrified. Hubby woke up and, between sobs, I told him what was going on. We rang Doctor on Call and were told to go to A&E as it was the only place that could do the necessary tests etc. So off we went.......

We were in the hospital until midday today. If there’s one thing you should remember it’s that it’s fine to walk into hospital in your pyjamas and dressing gown in the early hours of the morning......... but it’s slightly more embarrassing when you have to leave that way in the middle of the day. I hadn’t even brushed my hair (though I did brush my teeth before I left the house!) Of course I met someone I know and haven’t seen for years, though thankfully she’s very nice and had also read the article in the local paper so knew what was going on with me.

Thankfully I wasn’t having a heart attack and all the necessary checks were done. The doctor believes it’s Dexy’s final revenge. Steroids can lead to muscle damage and there’s signs of that, although hopefully it’ll rectify itself through time. He also suggested I may have drug induced lupus which would account for the rash on my face, but he’s not sure. Interestingly one of the drugs that’s known to cause it is the one that almost killed me in January....... and apparently (according to Dr Google) it can take up to 2 years to manifest..... hmmm...... 

Hopefully I’ll get some answers from my GP and/or neurology and oncologist; all of whom I have appointments with this week. 

Most disappointingly I missed a Qi-gong and meditation workshop I’d signed up to do today, and won’t be able to sea swim tomorrow. On the bright side, I appear to have dodged another bullet the medications seem to keep trying to hit me with. I’m home. I’m exhausted, I’m still very sore and my face still looks like I’ve the measles, but I’m home and I’m ok.

Dexy can get lost. He doesn’t like me and I don’t like him. We’re not destined to be together. I’m resting and working on getting over the break up. But I’m not going back. Xxx

Did I read Dexy wrong??

My relationship with Dexy took another turn today..... I’m more confused than ever. It appears he may not be to blame for my turn this time after all. I got rid of him so slowly that the experts feel he should’ve taken the split ok and is unlikely to have sought revenge with face rashes, aching joints and nausea. He may even have been protecting me from these things. Suspicion now lies with my other bed fellow, Levi (levecetirum, my anti seizure medication), the flu jab or an allergic reaction to something else. Nobody seems to know. Thankfully today I felt a lot better, though still not great. And my bloods have come back good though being redone on Monday to make sure. 

Thankfully it appears that Dexy and I are officially split up. He’s accepted it and we can both move on. Maybe Levi liked Dexy being there and hid behind him. If that’s the case then he’s going to have to accept that he’s now on his own. Or else he might end up being dumped too. We’ll see...... 

Today on the sofa with Anchorman 2 was very restorative. Tomorrow I plan to do much the same. On Saturday I’m booked to go to a meditation and Qi-gong afternoon and on Sunday I’m planning a sea swim and a welcome flying visit from my gorgeous son. 

Dexy is gone and I’ve a close eye on Levi. Send me good vibes and positive energy. I need to leap this hurdle and get back to living life. Xxx

Steroids and me.......

A letter to my steroid tablets (dexamethasone)

Dear Dexy,

Why can you not just leave me alone? I know it might be difficult to accept, but after 19 months I’ve had enough of you and I want us to split up. I’ve tried to let you down gently by reducing how much I see of you over the past 6 months. I shouldn’t have stayed with you for more than 3 months to begin with, but nobody warned me how much you would get your claws into me the longer I stayed with you. Nobody suggested you might do me harm in the long term and that I should break up with you before then.

The day was always going to come when we had to just make the break. I’m disappointed that you feel the need to make me so miserable. Making me feel slightly nauseous and dizzy is bad enough, but to give me a horrible, angry rash on my face and neck, and leave me hardly able to move due to joint pain, is just mean. I refuse to be beaten by you and I wish you’d just let me walk away without all this unnecessary drama. 

I’m seeking advice, but be warned...... I will dump you as soon as is physically possible. You can force me to take you back in a limited amount over the short term, but ultimately I’m leaving you. Please rethink your position and let me get on with my life. Let’s consciously uncouple for the benefit of everyone. 

Yours in hope,

Trish

Sea healing

My second day without steroids. My poor body is deeply confused. My joints are sore and I have an itchy rash on my neck, face and chest. I’m tired and there have been some tears. 

This morning I debated whether a sea swim would be wise. I felt weak and had a headache. But I know I always feel better for it, so I packed up my bag and off we went. When we got to the beach the tide was high and, again I debated whether to go in or not. Then I realised that even being in the sea air had improved how I was feeling....... so in we went. 

Hubby jumped on ahead and I watched him diving through the waves as I slowly and delicately tiptoed my way into the water. The waves started slapping..... breaking on me. I laughed with a woman beside me as we walked in deeper. Then a wave knocked me over. I tried to get back up but couldn’t. The water was too shallow for me to swim, but too deep for me to get back up on my feet...... waves were breaking over my head and my breath was taken away from me a bit. I started to panic a little. The lovely lady beside me helped me up and hubby came back to make sure I was ok. I was but decided to get out. My quickest sea bathe yet, but still life affirming.

We got out, had some breakfast and then a nice walk looking at the sea. There is no doubt that I am weakened by long term steroid use and coming off them is going to continue to be challenging and a bit miserable at times. There is also no doubt that my Sunday sea swims are restorative and are helping me beyond what any medication could ever do.

I have a feeling it’s going to be a slow week this week...... but I also have a feeling I’m entering another positive stage in my journey. Bye bye steroids..... let’s get my cheekbones back!! Xx

Let’s try this again......

Last steroid just taken. I hope! I’m delighted yet a bit scared. Who knows what will happen next? How will I feel? I’ve been dropping them down for months and have had a few different scheduled end dates due to physical setbacks as my body gets used to doing without them again. This time I’ve finally made it to the planned last day. Third time lucky.......

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.”

Eleanor Roosevelt

Walking taller

“We don’t need no education”

The Wall, Pink Floyd

I didn’t like school as a teenager. I was rebelling against a step mother and step sister, against a very middle class upbringing and against the world in general. I dressed in black, ripped jeans and turned to rock music. Anything to annoy those in authority. I was opinionated and not afraid to question. My teachers didn’t always appreciate it!  I think I can pretty safely say that none of those teachers ever said “This girl might just be a bit of a late bloomer and one day I reckon she’ll find her niche and maybe even end up receiving a medal....” 

But guess what??..... yesterday, at Hillsborough Castle, I received my British Empire Medal for Services to Policing! 

Never in my life would I ever have seen that coming (Nor would anyone else I don’t think. I know my former teachers certainly wouldn’t have!) I love my job and am passionate about it and the organisation, so it’s not difficult for me to go the extra mile on occasions. I’m certainly not alone in doing so, and it’s a real honour to be recognised for it. It’s taken me a while to stop justifying my BEM and to accept that sometimes your best is good enough, but I’ll openly admit I walked out of Hillsborough Castle yesterday carrying myself just a little bit taller. 

I have a few observations about it all -

• It’s one for the workers! I’ve worked hard but I’m not sure I’ve done anything truly exceptional. Sometimes your best is good enough. 
• You don’t need to be in the top tier in terms of rank or grade...... just do your best and you might make a small difference where you are.
• I believe much of my reward is due to my ability to work in partnership..... and you don’t do that alone! There are a lot of other people who should be sharing that medal. And how amazing are those who took the time and energy to nominate me?? Good people. 

I was joined at Hillsborough by my husband, son and sister. It was all very posh and I was quite overwhelmed. In a bid to remain true to myself, I had ordered a dress with a Wind in the Willows print on it. It wasn’t expensive and there was a very real risk it could’ve arrived looking like something from a dodgy t-shirt printing shop in a seaside resort! Thankfully it didn’t. So I was able to keep things classy but still the tiniest bit quirky. Determined to enjoy the glamour of the whole thing, I even bought a hat! 

When we arrived, those receiving medals were taken to a different room from their guests. I began talking to a lady I randomly found myself standing beside. In yet another strange synchronicity it turned out that I know her son through work...... and then we noticed we both had on the same hat!! She was wonderful. In the past year she has celebrated her 80th birthday, 60th wedding anniversary, and now received a BEM. She was warm and sweet and helped keep my nerves in check. (It’s fair to say I was a little hyper...) 

I don’t really remember walking in to receive my medal. I’m pretty hazy on what I said to the Lord Lieutenant, although I do know that my son is currently her neighbour!! I’m sure it’s wonderful for her to have students living further up the street. I’ve told her if she ever sees him drunk, with a traffic cone on his head, that he’s nothing to do with me! 

What a day! The staff were lovely and went out of their way to make us all feel really special. And the medal is beautiful! I’ve no idea when I’ll ever be anywhere that will call for me to actually wear it, but just having it feels pretty amazing. Lapping it up?? Damned right I am! 

The day was finished off with a meal with friends. Great company, shared laughs, relaxing time after all the excitement of the day. Today I’m exhausted but glad to be back home and relishing a bit more time with hubby and big sis. Not to mention sorting out the washing...... a BEM doesn’t really change things too much haha!! 

The rebellious teen has turned out alright I think. At 43 years old I’ve been married for 21 years, have raised a gorgeous son who I’m very proud of, have a BSc (Hons) in Crime and Criminology, a network of the best friends a girl could ever want (many of whom date back to those early rock n roll years!), and now I’m the proud recipient of a BEM. I have a great life and am surrounded by amazing people. 

Lucky old me xxx

Sea slaps & friends

Sunday. My favourite day of the week. The past week hasn’t been one of my favourites. Not awful but it’s fair to say I haven’t been on top form since having a couple of small seizures and an overnight in hospital a few weeks ago. I know I’m luckier than many, but it was undoubtedly a confidence kicker and a set back, not least because it slowed down the speed at which I could get off the steroids. Plus the slight increase in anti seizure medication is making me tired...... or something is. Everything has just been the tiniest bit more difficult than it had been. 

Thankfully we’re becoming more adept at managing these small blips. For me it’s all about keeping busy but not too busy, surrounding myself in positivity and support, laughing, and getting plenty of rest. Balance.

In my world of synchronicities, as always, friends pop in with support at the best times! Family are always there too and are unbelievably intuitive.... knowing exactly what to do, when. 

On Friday I enjoyed a lovely lunch with a neighbour. Yesterday a fellow brain tumourette called unexpectedly with a beautiful gift - a very pretty bangle that has ‘carpe diem’ engraved on it. Today another friend, who’s been my friend for 30 years, went sea bathing with hubby and me. She brought me a framed, beautiful old photo of swimmers in the sea in the same place we go to every Sunday morning. A step back in time that shows how long people have been enjoying the benefits of being near and immersed in the ocean. 

And there are very definite benefits! Today’s sea bathe was a bit like getting beaten up..... waves were hitting us so hard you could literally hear the slap! And it was chilly.... not the water so much as the air. We laughed and laughed as wave after wave washed over us. Is there anything funnier than the anticipation of a comedy moment you know is coming?....... you can see the wave coming in, you can see it starting to rise up, you know it’s going to break over your head......you know you’re going to look like a fool....... Laughs all round! 

My friend who got me the photograph had recommended I read a book her husband loved. He’s a surfer. The book is called ‘Blue Mind’ by Wallace J. Nichols. I’m absolutely loving it. It explains our obsession with water. It even manages to provide some explanations for some of the more quirky things I’ve done over the past 19 months; such as the phase I went through where I wouldn’t wear any colour except blue! And my complete hankering to get to the beach and be in the sea. Seems it’s all to do with neural pathways and the like. The book perfectly meets my needs - scientific explanations alongside observations about the more ethereal feelings and emotions being near or immersed in water can elicit. 

19 months down the line and I’m still learning how to deal with this new life I’ve been thrown into. Sometimes it’s just hard. It can seem unfair and be exhausting. But sometimes it feels like the most important life lesson I could ever have been given. As I sit on my sofa on a Sunday afternoon, in my PJs, fresh from the shower after a good morning’s sea slapping, with hubby beside me dozing, I couldn’t be more content. 

I remain the luckiest unlucky girl in the world. 

“Neuroscientists and psychologists add that the ocean and wild waterways are a wellspring of happiness and relaxation, sociality and romance, peace and freedom, play and creativity, learning and memory, innovation and insight, elation and nostalgia, confidence and solitude, wonder and awe, empathy and compassion, reverence and beauty — and help manage trauma, anxiety, sleep, autism, addiction, fitness, attention/focus, stress, grief, PTSD, build personal resilience, and much more.” 

From Blue Mind by Wallace J. Nichols

The good and the bad....

Yet again, I find myself torn between feeling incredibly positive and hugely frustrated and scared. I’m focusing on the former and trying to constructively deal with the latter..... 

I’ll write about them in reverse and start with the negative because I can’t and won’t say too much about it, so it’ll be quick! Suffice to say that our Health Service, like all other parts of life, contains some amazing people and some awful people. It can be inspiring and life saving whilst also being, at times, dangerously incompetent. There is a massive funding issue and also some human cynicism and lack of care. Patients rely on the NHS staff and it’s terrifying when you can see a clear lack of care and become confused about the best way forward. As ever, I remain grateful to the ones who’re in the job for the right reasons and I lean on them to help me navigate the deep and dangerous waters of a minority of departments/ specialists. 

September was always going to be a big, exciting month for me. I knew this and had been settling myself and preparing for it. I had hoped to be finished with steroids on Saturday past so was seeing the next few months as ones where my body could just start to find it’s balance again. Unfortunately my wee set back has extended out the steroids for a bit longer. Only a few weeks, but enough to lead to a few tears. 

Right, that’s the negative done. I’ve stuff to sort but it’s a job for another day and much higher energy levels.

Positives! They’re where it’s at........

On Saturday, hubby and I went to two charity coffee mornings. One was for QUB Brain Tumour Research and the other for Macmillan. It was lovely to bump into a nurse who’d help deal with me when I had my most recent seizure. I owed her a hug and it felt good to get the chance to deliver it. Today I unexpectedly bumped into two people who I’d met at one of the coffee mornings. More lovely folk who’ve learnt the value of life. This was followed closely by meeting a colleague from my first full time  job, some 20+ years ago! She had sent me a lovely card when she’d found out about my condition and it was nice to see her, say thanks and share yet another hug! 

I got sea bathing again yesterday after missing the previous week following my hospital stay. This week my neighbour went in too. She loved it and I loved her company! What a glorious, life affirming way to spend a morning. 

Last night we went to the Waterfront to see Biffy Clyro unplugged. I cried three times but just “oh I’m a bit overwhelmed” tears that didn’t last. I’m quite sure releasing them did me a world of good. 

Today I’ve been working and have spent some time with my dad. I’m tired so will be in bed early tonight. Some of the finishing touches for my BEM outfit arrived, which makes me smile. I can’t believe it’s next week! It still feels so surreal. I hope my outfit is enjoyed by family and friends as being both suitably smart and dressy, yet slightly quirky..... Hoping the weather gods don’t dump another storm on us, but the long range forecast isn’t too bad so far. Honestly I don’t even know if it’ll be indoor or outdoor so it’ll all be a lovely surprise on the day. Most importantly I get to share an enormous honour with my husband, son and sister. 

So all in all I guess the rollercoaster ride continues. It’s just life. Highs and lows, putting one step in front of the other, and enjoying the good times and positive human energies. Hopefully I’m doing it right!

“I work very hard, and I play very hard. I’m grateful for life. And I live it – I believe life loves the liver of it. I live it.”

Maya Angelou

Geeky and ridiculous.....

My local paper picked up on the Macmillan cheque handover and asked to do a feature. A good way of raising awareness of Macmillan services and hopefully giving some hope to others. Also great to be able to give credit to those around me. 

The paper came out today. It’s impossible not to feel a bit wick...... I refer to the number of hits on this blog as ‘ridiculous’ and even call myself ‘geeky’...... True, but perhaps not for admitting in an interview!

I’m also a bit adverse to the use of the word ‘traumatic’. It’s a bit like ‘suffering’..... I’m not ‘suffering from’, I'm ‘living with’. There have been traumatic times, and will no continue to be, but there have also been some wonderful, life affirming times.

Anyway, as I cringe a bit, I am also happy. Hopefully some of what I’ve said will resonate with others. And most of all, hopefully family, friends, colleagues, Macmillan and Causeway Hospital doctors and nurses will read it and know how much I appreciate them, and also see how their kindness and generosity will help local cancer patients. 

“Tricia’s Traumatic Journey”..... available on Disney dvd from September...... haha xx

Fighting meds

As ever, I’m fighting medications. After Thursday evening’s blip, I’ve had both my steroids and my anti seizure upped very slightly. It’s not by much but I hate it.

Ironically, the increases keep me safe but make me feel worse. Logically I know I’m safer, but physically I feel more vulnerable. I’m tired, a bit shaky and generally more dopey.  As a result, I managed to take a double dose of anti seizure meds this morning..... taking tonight’s as well as this morning’s. Unbelievably, despite being in marked up pill boxes, this is the second time I’ve done this in the past year. A lapse in concentration resulting in me making a stupid mistake. I thought I’d cried all my tears over Thursday night, Friday and Saturday, but the meds mess up this morning brought more. I don’t want to be the idiot having to bother the doctor on call to ask what I do after taking the wrong tablet dose....... again...... The doctor on duty was lovely and reassured me patiently. It was decided that I should prepare to feel particularly tired and dopey today but just to keep things calm and only take a very small dose this evening to keep me safe overnight. I know half the battle is staying calm, and I’m hoping I’m so tired I’ll sleep through tonight without any issues. The only way to deal with it is by staying calm and not allowing fear or negativity to creep in. 

Thankfully, as ever, my wonderful family stepped in to hold me up.  My sister and brother in law were over for a quick visit after my hospital stay. I couldn’t really sea swim today, but we all went to Portrush anyway. We could still appreciate the sea air, the beauty of the sea, and each others’ company. We enjoyed breakfast, had a short walk and ate ice creams. Then we came home and waved sis and b-i-l off. Hubby and I settled on the sofa with Rock of Ages. We subsequently booked tickets to see the musical at the Grand Opera House next June. Sure, why not?

So it’s been a crappy few days but also a few days when I’m yet again reminded how loved and cared for I am. Far too many tears shed but supported by my local Team and my family as always. 

Tomorrow I’m going to work as planned. I wouldn’t if I didn’t feel up to it or thought there was any risk. I know that staying at home or sitting alone will drag my mood down further as I’ll overthink. 

The facts are that I’m grand. The increase in meds is a setback but it’s temporary. We’ve been here before and we’ll get through it now like we did then. I’ll pay more attention and make sure I don’t lose focus and take even more than I’m supposed to.... numpty! I’ve been checked over, I’ve had another wee warning about doing too much and getting over excited, I’ve had my scan results a bit earlier than expected and the tumour is stable. Plenty of positives. 

Just to prove I’m still smiling, go into YouTube and look up the video of the older, Scottish woman reading The Wonky Donkey to her grandchild. Funniest thing I’ve seen in a long time. 

“Against the assault of laughter, nothing can stand.”

Mark Twain