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