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

Still standing!

“Don't you know I'm still standing better than I ever did

Looking like a true survivor, feeling like a little kid”

I’m still standing, Elton John

Seizures and a night in hospital are not what we want. It’s easy to feel a bit defeated by another setback. Until we really think about it..... I’ve just been reminded to take care of myself, to take things slowly, that it’s ok to have a good cry, and that I’m still here and luckier than many. I’ve been reminded of how many people care about me and how many good people there are in the world. 

I was kept in hospital for just one night. During that time I was kept safe and had a full MOT. I also got the general results from my last scan...... it’s being classed as stable. There will always be the totally unrealistic, believes in fairies, part of me that believes some day I’ll be called in and told the tumour has gone completely......but in the absence of magic, ‘stable’ is as good as we’re going to get. Stable is good. Stable is great. Stable is alive and functioning and living a happy life. 

So I’m relieved but also still a bit scared. Seizures knock your confidence. I’m scared of another one happening. Particularly in public. I feel guilty for others having to deal with me because I know it must be awful to see someone in that state. I’m tired and still a bit shaken (no pun intended, but comedy genius is difficult to suppress!)

So why did it happen now? Probably medication changes. And maybe a bit of over activity on my part again. September is a big, exciting month for me. Like a child on Christmas Eve, sometimes I can overwhelm myself.....

But we’ve been here before.  Serious medical conditions bring big, scary times. There’s no avoiding them. But that’s life. Brain tumours suck. Cancer sucks. But I’m home, I’m safe, hubby is looking after me and my sister and brother-in-law are coming over for a flying visit. My confidence will come back as time passes. 

One final funny story to end this blog entry on......

The Family Room our Macmillan donation is paying to refurbish? I was told it’d probably be in Medical Ward 1. I said I’d prefer it was in Rehab 1 because that’s the ward is been in..... Guess what ward I was in on Thursday night?? Oh the irony...... Medical 1 of course! The staff there were also wonderful, as were those in A&E. My local hospital is jammed full of incredible NHS staff. I have a whole team of experts who I know have my back. Not to mention the emotional support of the best family and friends anyone could ever hope for.

Slightly down but far from out..... 

“Blackbird singing in the dead of night

Take these broken wings and learn to fly

All your life

You were only waiting for this moment to arise.”

Blackbird, The Beatles

A hat and a setback

So I got my dress for my BEM ceremony at Hillsborough in a few weeks time. It’s perfect! Smart but different...... very ‘me’ I think. And I even ordered a hat! In for a penny...... My hat arrived yesterday. I got home from work and there was a big box on my doorstep. Exciting times! I opened it, made sure I still liked it and then rushed off to choir practice. Everything was going swimmingly......... 

We were singing away and I was feeling fine. Then I started to feel a bit of a twitch in the left hand side of my face. Out of the blue. It very quickly became a seizure. Thankfully there were two nurses in attendance as well as some good friends. They all worked together to get me sitting down and to reassure me that everything was ok. 

Seizures are terrifying. And exhausting. And embarrassing. And confusing. And upsetting.

Hubby was duly called and came to get me. He took me home where I had two further seizures. Again, not big ones, but still frightening and upsetting. Doctor on call were contacted and they sent an ambulance.  By the time I arrived in A&E I felt a bit like the guy in Night of the Living Dead........My left arm was completely dead to me and I was half expecting to start smashing plates over my own head. Thankfully it eventually came back before I had to start up the chainsaw......

Another night in Causeway Hospital Hotel. I’m hoping it’ll just be B&B and that I can cut my visit short and go home later on today.

I’m gutted. It was going so well. September is an exciting month and I was due to finish the steroids in 2 days time. Now I’ve had them upped very slightly again. After months of working to get off them. A bit soul destroying. 

Deep down I know it’s just another bump in the road and that I’ll be fine. I’ll allowing myself to be a bit pissed off for a day or two, I’ll rest up. And then I’ll pick myself up again. I have a lovely dress and a damned posh hat and I’ll be bloomin wearing them! 

“Sheltered, you better keep the wolf back from the door
He wanders ever closer every night
And how he waits begging for blood
I promised you everything would be fine”

The Wolf, Mumford &Sons

Update-

I’ve had a full check and all is fine. I had a scan 3 weeks ago and everything was stable so there’s nothing horribly sinister that we weren’t already aware of. This is just a speed bump. My anti seizure med has been increased a bit. So has my steroid, but I’ll be able to start dropping it again after next week, so it’s not as bit a setback as I initially thought. 

I’m safe and being very well looked after and I’ll get home later on today. Tired and emotional but not letting it drag me down for long xxx

Holding back the sea

It took a few months, but the media stuff is now done. I was interviewed by the local paper on Friday and did the obligatory ‘big cheque’ hand over today.

It feels good to get it sorted. To everyone who’s given me the credit, please note how we signed the cheque...... I didn’t give almost £9,000 from my bank account. It was very much a team effort by my amazing family and friends. 

The inspirational people are those around me. The doctors and nurses that looked after me and kept me safe, my sister and brother in law who asked for donations in lieu of wedding gifts, my husband and son who continue to look after me and put up with all my ‘quirks’, the friends that organised and played at Triciafest, the family and friends that donated as wedding gifts, and the friends who donated just because they’re decent people. 

Today I celebrated the cheque handover by going out for lunch and to the cinema with a wonderful friend. We watched Mama Mia 2; an entirely ridiculous film that we loved! The company was perfect and the film great fun.

Yesterday, hubby and I went sea bathing (month 3 already!) before staying to watch the Red Arrows. The sea swimming conditions were perfect, with plenty of big waves to get you in quickly, and nice and warm for getting out. The waves were chasing me..... no matter where I went, the big ones always seemed to break right over my head. Hubby decided at one point to be the gentleman that he is and protect me........ he stood behind me as I was treading water; the intention being that the wave would break on him and I’d be sheltered.... Hmmm, what actually happened was that the wave hit him, threw him forward into me, knocking me flying. I had a short moment of thinking I might drown as I lay on the sea bed with hubby’s full weight pinning me down. Thankfully he moved relatively quickly and I was left properly dunked but knowing I have husband who will literally try to hold back the sea for me! 

After sea bathing we had breakfast baps, ice creams and watched some of the Airshow. Then we came home early afternoon and, after showers, snuggled up on the sofa to watch School of Rock. Sundays don’t get much better! 

This Saturday sees me take my last steroid. I’m both delighted and a bit nervous. It’s been 18 months and titrating off them has been fairly hard work. It’ll be good to have my body back a bit. I’ll only be left taking anti seizure medication, and it’s a relatively low dose. I’m hoping that getting rid of the steroids will help me function a bit more smoothly. I do well in general, but there are few rare things that I definitely won’t miss! 

All in all, I really don’t have much room to complain and I continue to appreciate how fortunate I am, compared to some. I’m living an exceptionally happy and fulfilled life, and intend to keep doing so for as many years as I’m meant to have. 

“Took a drink out of the ocean and I'm treading water there before I drown.

Let's dive, I wanna dive to the bottom of the ocean”

Mountains by Biffy Clyro 

You know you’ve got the best friends when.....

Big triciafest update!

In May 2018 my sister, got married and asked guests to give to Macmillan in lieu of wedding presents.  On the evening of the wedding, local rock bands Fragment, Trucker Diablo, Nasa Assassin, Gasoline Outlaws and Lo Mejor played a gig at The Diamond Rock Club in Ahoghill.  Nicknamed ‘Triciafest’, the night raised money through ticket and merchandise sales.  Other bands and local businesses also helped by giving auction and raffle prizes. 

Total amount raised through all the fundraising was £8,748. 

As a result of the money raised, Macmillan is now able to provide the Northern Trust with funds to refurbish a Family Room in Causeway Hospital, including the provision of reclining chairs that can be moved onto Wards, at bedsides.  This allows families of cancer patients a relaxing place to have a break and talk, as well as allowing carers to spend time more comfortably at their loved one’s bedside.  This is particularly important for older carers.

On Monday I am getting the obligatory media photo of me handing over the ‘big cheque’. Yesterday I gave an interview to the Coleraine Chronicle. 

YOUR generosity is going to make a genuine difference to local cancer patients. Thank you from the bottom of my heart. My family and friends totally rock! Xxx

Just keep swimming.....

The forecast was right...... it poured with rain this morning. You must be a bit crazy to go sea bathing in the Atlantic on a day like that......... Ladies and gentlemen, I present to you, Exhibit A;

Crazy? Maybe. But at least we know we’re  alive! Sunday sea bathing with my sister and brother in law, who came over from England especially to give it a go. Photo taken by hubby, who was just out after his dip. Breakfast baps and cups of tea afterwards, joined by my dad, son and a colleague and friend. I have the best family ever! 

Home to a hot shower, heating on for the first time in months and Finding Dory on the TV. Perfect Sunday. Plus a Bank Holiday Monday off tomorrow. Doesn’t get much better than that. 

I might be a wee Dory sometimes, but I’m still swimming.

“I can remember some things because I have a family because everyone has a family.”

Dory

Fundraising, laughter and sunflowers

So what’s been happening?? Well, I was working Monday to Thursday so I haven’t had a huge amount of time for fun. Although thankfully I still enjoy my job and have great colleagues, it’s still true that some days ‘work is hard work’..... 

Truthfully it’s been a tough enough week. The steroid reduction (down to just 0.5mcg from tomorrow!) brings all sorts of odd side effects, not least tiredness and some mood dips. Thankfully family, friends and work colleagues are always on hand to lift my spirits and make me laugh over something or other. 

I also made a big step forward with sorting out all the money raised from our fundraising activities. The final amount is almost £9,000 and I’m getting ready to officially hand over a ‘big cheque’ on Monday 3rd September. Then I’ll be able to tell you all what we’re doing with it. Tangible outcomes. Watch this space.......

Physically my joints are sore at the moment, and I get very tired. The weather doesn’t help...... I’m like a human barometer, so low pressure and my brain do not get on....... It seems to be that a low pressure front hitting a high one has the biggest impact; causing me headaches, a mood drop and even an increase in general dopiness. Stormy weather is not a brain tumour patient’s friend. Plus it’s going to make my Sunday Sea Bathe somewhat less pleasurable..... 

Having said all that, I’m refusing to let it stop me. I can’t change the weather and I know I have to be careful, but I can help keep my own mood up. Here’s how I’ve done it this week -

• Music - I start my days with some upbeat music while I get ready.
• No pressure - I’ve been deep breathing and not being dragged into anything negative or high pressure.
• Reading - I’ve been going to bed early with good books.
• Laughs - I’ve been honest with those around me and they’ve helped keep me buoyant. As ever, the shining stars keep glittering all around me.
• Hugs - It’s amazing the difference a good hug can make to a crap day. 
• Sunflowers and wildflowers - Hubby took me to see a beautiful field of sunflowers and wildflowers yesterday. Yet again I’m reminded of the beauty all around us.

To top things off, I’m now heading into a very exciting time..... my sister and brother in law are coming over for a couple of days, and September sees the end of the steroids, a few gigs, a couple of nights away, the handing over of the charity money, and my BEM investiture ceremony! 

The future looks exciting!! I’ve been in the wildflowers, I’ve been in a boat out at sea. I’m 

#livingwith xx

“You belong among the wildflowers

You belong in a boat out at sea”

Wildflowers by Tom Petty

Hat optional

It’s not every day you get a letter that includes the sentence “The wearing of a hat is optional”........ 

Today I received the details for my British Empire Medal investiture ceremony. It is both exciting and surreal. I’m not going to try and play it cool and pretend I’m not excited. Not in a million years would I ever have imagined myself being awarded a medal. I still can’t quite believe it, but I’m enjoying the sheer craziness of it! 

So will I wear a hat?? I have friends trying to persuade me to go the whole hog - designer dress, fancy hat etc..... My biggest problem is that I have no idea what size I’ll be..... I’ve put on weight from the long term steroid medication, but I’ll have finished taking them by the time the ceremony takes place. If the weight comes off as quickly as it’s gone on then hopefully I’ll be able to wear a nice dress and feel good about myself. Maybe I’ll even be able to wear heels if my feet have stopped swelling and looking like a hobbit’s and I’m a bit steadier on them!

Regardless of my size, I’m still not a ‘girlie girl’...... I’m a plain Jane. But isn’t it lovely when my dilemma is what I should wear?! Not exactly a big worry when you consider some of the stresses we’ve had over the past 18 months. 

So will I wear a hat? Who knows? Unlikely I’d say..... unless I can wear a big floppy one like Stevie Nicks in the video for Tusk. Will I get glammed up in a dress and heels? I’ll try my very best. I certainly won’t wear jeans and whilst I can’t guarantee a Meghan Markle style outfit, I will dress appropriately in something pretty and I’ll wear it with a smile! Will I enjoy every moment of the event with my family? Damned right I will! 

“I try to be like Grace Kelly
But all her looks were too sad
So I try a little Freddie
I've gone identity mad!”

Grace Kelly by Mika

Laughing mindfully!

I know I should be hiding this but it’s too funny not to share. And you know laughter is my absolute favourite medicine.

Today I’ve been trying to relax as I’m not feeling great. I think I just have a cold and am still enjoying the steroid reductions. While pottering, bringing in washing, this beautiful butterfly landed beside me. Like the true hippy I’m trying desperately to become, I stopped and watched him for a while.

In order to try and chill this afternoon, I lifted a magazine that had a section that encouraged me to colour in butterflies they’d given you the outlines for. It’s a sign, I thought. I’ll give this a go, I thought.

I went and found colouring pencils that used to belong to my son when he was at primary school...... I settled myself on the sofa....... I started to try and be mindful......

Mr Butterfly, by Trish, age 43 and a half.....  

I swear I’m trying so hard to be mindful and relaxed and all that jazz..... but when it comes to being creative I think I need to stick with analysing and writing. 

I love being outside and enjoying nature. I love to read. I love to sing. I’ve even learnt how to deep breathe and how to meditate......  But an artist I will never be! Not a mindful magazine in the world is going to change that I’m afraid....... 

I’ll bet Monet couldn’t write a report on organised crime issues..... the world needs all sorts!

“A person who never made a mistake never tried anything new.”

Albert Einstein (allegedly!)

Wayfaring in a car....

Can you count it as wayfaring if you’re in a car? Or do you have to be on foot? I’m not sure, but it’s a nice word so I’m using it! Hubby and I are back from our wayfaring.....

Here’s how our 6 day road trip panned out.....

Coleraine to Larne 

Larne to Cairnryan by boat.

Cairnryan to Dumfries

Dumfries to Pooley Bridge (and Ullswater Lake)

Pooley Bridge to Kendal

1 night in Kendal

Kendal to Morecambe 

Morecambe to Manchester

2 nights in Manchester

Manchester to Marsden

2 nights in Marsden

Marsden to Glasgow

1 night in Glasgow

Glasgow to Ayr

Ayr to Cairnryan

Cairnryan to Larne

Larne to Coleraine

7 days, 6 nights, 694.8 miles.

Why? A number of reasons really...... my sister  and husband were having their third (yep, third!) wedding party. Considering they moved their wedding to Coleraine to accommodate the little princess, it seemed only right we make the effort to go to their party in Manchester now that I’m a bit fitter. Plus we wanted to see the house they’ve been renovating and spend time with them. And finally, we deserved a break! We wanted time away together, away from work and having some fun. A holiday. 

But why not just fly?? Oh, I don’t do that, remember?? I pity the fool! Honestly, a change in air pressure due to weather can cause me a headache...... there’s no way I’m getting on a plane. Thankfully, hubby was up for a road trip and we made a vague plan. Very vague. Then we just followed our noses.

Worst bits? 

• The drive from Cairnryan to Dumfries was grim. 
• As a Glaswegian, I’m ashamed to say it, but the night in my hometown won’t go down as a great time.  Mostly my own fault. I’d done way too much and was struggling quite badly by our last night. My joints were so swollen I was miserable and my back was agony from bumpy roads and too much walking around in hilly towns. Plus I only booked it a couple of days before and there were cycling timetrials on in the city centre so all the roads were closed and it took over an hour to get to our very expensive hotel...... where we were put in a tiny room with the most uncomfortable bed, on the top floor, at the furthest away point. Literally the last room! So Glasgow wasn’t a huge success. Learning from past mistakes, I even had to walk out of a shop and deep breathe for a minute......I reckon it was the closest I’ve come to a seizure since March, which would’ve been a massive backward step. But I’ve learnt my lessons and I didn’t play the hero. Hubby patiently helped me back to the hotel and endured a night of me tossing and turning. Not to mention a few tears. It was unpleasant but I also proved to myself that I can remain calm and that it’s ok to admit if I feel vulnerable to a turn. Ever the comedian, I got a song in my head and indulged my dark humour (until hubby told me, rightly, to stop it because it wasn’t funny...); ‘The South’ by Cadillac Three “This is where I was born and this is where I will die”. Yep, hubby was right. Not funny.

Best bits? 

• The ferry. Odd choice I know, but it brought back memories of childhood (minus the four hour journey and vomiting that we used to endure!)
• I loved Morecambe. Purely for Eric’s statue. I’ve already blogged about it so I’ll not repeat, but what fun that was!
• Time with my sister and brother in law at what I’ve now named ‘Badger’s House’. Again, I’ve already blogged about it.
• Ayr. We stopped there on the way back to the boat and were pleasantly surprised. The sea air seems to just be my thing! It clears my head. Ayr reminds me of what I imagined Port Angeles was like when I read Twilight by Stephanie Myers. There are lots of little side streets with quirky shops. The best of all worlds; sea, river, lost things in quirky shops down unexpected alleyways. Imagination fully engaged... Ayr gets a big thumbs up from me. 

So all in all, a wonderful trip away. Tiring but I’m home feeling like I’ve taken another big step forward. Refusing to be beaten but learning from past mistakes of pushing too hard. 

As of Sunday, I’m down to just 1mcg of steroids a day. Titrating down continues to be tough going, but if all things remain equal I’ll take my last one in 4 weeks time. For me this is really important. I don’t like taking medications and I’ve no interest in living my life high. The other side effects are awful too - weight gain, fluid retention, mood swings, and other stuff that’s not for a blog! Plus I never know when I might actually need them again in an emergency situation. They’ll be far more effective if I’m not already totally dosed up on them.

Overall, a big week on a long health journey. Another milestone. With my amazing family at my side. 

Living with......

“You can’t stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes.”

Winnie the Pooh, by A.A Milne

Seeing the world in book and song

“When he had started gathering Lost Things all those years ago, he hadn’t really had a plan. He just wanted to keep them safe in case one day they could be reunited with the people who lost them.”

The Keeper of Lost Things by Ruth Hogan 

I feel like I’ve started seeing the whole world in books or in song. Every new experience makes me think of a passage in a book or a song lyric. I pretty much have always seen the world like this, but it’s far more pronounced now. And I’m much more willing to say my thoughts out loud. 

Yorkshire is very much being seen in books.... predominantly The Wind in the Willows, but today we walked into an antique shop and I was suddenly in the book I’m currently reading, ‘The Keeper of Lost Things’ by Ruth Hogan. This shop even had a basket of keys that you could buy for £2 each. How wonderful is that?! Some had labels still attached. How could that not spark your imagination?

The shop was filled with other gems too. I spoke to the owner;

Me: “You’re like the Keeper of Lost Things. (He smiled but I’m not sure he got the reference). This is a very cool shop. I’ve watched Flog It. I know how this works. This egg says £6 but I’m going to offer you five. You’re going to sigh and argue a bit but eventually relent.”

I handed him a £10 note and, without a word, he smiled and gave me a £5 note back. I thanked him and went to leave. Spotting a small wooden box on the way out, I went back in.

Me: “And now I’d like this too. Again it says £6, so I’m going to give you the £5 note you just gave me back.”

Shopkeeper: “Ok. Would you like a bag?”

Me: “No, that’s fine. My husband has pockets. That’s where I found the £10, so now I’m going to put my treasures in them as a replacement. And then we’ll find out they’re worth £360 each and you’ll realise what a great eye I have and the mistake you’ve made!”

Shopkeeper: *smiles* “Enjoy the rest of your day.”

£10 well spent I think! 

In the Wild Wood

“"Thought I should find you here all right," said the Otter cheerfully. "They were all in a great state of alarm along River Bank when I arrived this morning. Rat never been home all night—nor Mole either—something dreadful must have happened, they said; ......... But I knew that when people were in any fix they mostly went to Badger, or else Badger got to know of it somehow, so I came straight off here, through the Wild Wood.....”

Kenneth Grahame

My sister and brother in law have renovated a house in West Yorkshire. They’ve spent months on it and poured their hearts and souls into it. Having come here, I now understand why. It’s the Wind in the Willows in real life! I have literally arrived at Badger’s house..... 

It’s completely overwhelming and beautiful. A perfect haven. I have never felt so at ease in my life. 

Coming over here has been another big milestone for me. I’m too scared to fly because of the change in air pressure. Plus I had a bad experience with my head and ears on a plane a few years ago. It was put down to sinus problems at the time, but hindsight is a wonderful thing....... As neurotic as I know it is, I dont feel comfortable flying and I don’t see the point it putting myself through the stress at this stage. 

So to get here we’ve had to road trip it. That meant a longer trip away and hence increased my nerves a little. There was the journey, the second wedding party, and then seeing the renovated house. Even being away from home for a week was somewhat nerve wracking for me. I have been full of nervous anticipation over the trip for weeks. 

But now I am here. In my own little Wind in the Willows..... with some of the most important people in my life. 

Overwhelmed but overjoyed. 

Living life xx

Road trip part 1 - Bring me Sunshine

“Here today, up and off to somewhere else tomorrow! Travel, change, interest, excitement! The whole world before you, and a horizon that’s always changing!”

The Wind in the Willows by Kenneth Grahame

In May my sister and her (now) husband moved their entire wedding to Coleraine to accommodate me. As a result their night do was a charity rock gig with very few of their friends in attendance. 

Always one to make the best of a situation, my sister had a further two wedding parties! One in London for friends living there. The second was tonight in Manchester. Hubby, son & girlfriend, and I decided to come along and celebrate with them. Normal people would fly here, like my son and his girlfriend. But nooooo, the wee princess won’t get on a plane. A good thundery day gives me a headache..... ain’t no way I’m getting on a flight. I pity the fool....... 

So how do we get to Manchester? Boat of course! Dublin to Holyhead? Dublin to Liverpool? No good. Too long and boat times awkward. Poor hubby worked through all the options with me. Finally we decided on Larne to Cairnryan and a drive down via the Lake District. The princess wants to see Ullswater.... 

We left yesterday morning. Larne to Cairnryan is a very different experience to what I remember as a kid. We used to do it every year. It took hours and I spent most of the time throwing up. Nowadays it takes 2 hours and is cruising! We paid an extra £20 for the Lounge and enjoyed priority boarding and a quiet place to sit with unlimited cuppas and snacks. Money well spent. We went out on deck and I laughed as we passed Ailsa Craig..... every year as a kid my dad would’ve quizzed us “what’s that rock called??” I even remember that it’s rock from there that’s used to make curling stones..... I enjoyed the memories and smiled at the prospect of visiting my home country of Scotland again.

What I hadn’t remembered was that Cairnryan is the middle of nowhere..... The road from there to the Lake District will not sell Scotland to you, I'm sorry to say. It’s like being on the Frocess but for hours and hours...... with less tractors but more freight lorries. 

After what felt like days, we stopped in Dumfries. Again, not a great advert for beautiful Scotland. Saved, however, by the Burns trail...... a museum, statue etc to mark the famous bard’s time spent living there. We had some food and spent a short time exploring.

Next? The Lake District. We’d booked a hotel in Kendal for last night. But we wanted to see Ullswater on the way. We used to have a print of Ullswater Lake on our wall at home. A cheap, IKEA special that we took down ages ago, but it hung for many years..... seemed only right we visit the place we had on our wall for so long.

We duly started along the next stage of our journey. Almost there, we saw a sign saying “Alpaca Centre”. I have a friend who recently informed me she is getting two alpacas in September. She claims they can sense stress and will only come over to you if you’re calm. If you’re stressed they avoid you.... So we stopped at the Alpaca Centre because we were curious.  Unfortunately it appears to be shut and there’s not an alpaca in sight. Looks like a shed in the back farm yard that sells alpaca wool products. So we go to leave....... only to find ourselves locked in!! For a moment I was scared we were in the Ullswater version of Texas Chainsaw Massacre..... Hubby went off to try and find someone and out comes this man with long grey hair and a bit of an attitude tbh..... Thankfully he opened the gate and let us out. 

 Ullswater was lovely but it’s getting late so we push on.

As for Kendal? Pah! It was a Friday night in August and everything was shut at 5pm. The handful of restaurants still serving were full. Absolutely no character at all. We ended up having to have Pizza Express because we couldn’t find a pub doing pub grub. Even Table Table had a 2 hour wait! Nothing to write home about at all.

This morning I woke up exhausted but excited to be going to see my sister. And I had another reason to be excited...... I’d persuaded hubby to take me to Manchester via Morecambe. His own fault as he made the mistake of telling me about the statue of Eric Morecambe that’s housed there! Bring me sunshine....... awesome! This is what life is all about. 

From Morecambe to Manchester and a great party tonight. I love my sister and her hubby. I love my hubby and his patience with me and all my crazy ideas! 

Now we get a few days of quality time, before the next stage of the road trip..... 

Living life xx