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