Hot & bothered

It’s hot. Damn hot. 

I hate that I’ve become someone who complains about the weather. But I’m hot. Too hot. I’ve felt unwell since the end of last week. I’d put it down to the steroid reductions and I still think that’s probably part of it. As the temperature has risen, I’ve felt steadily worse. My ear is sore, I’m snuffly, I’m exhausted and just generally feeling off colour. Yesterday evening I ended up lying on top of my bed at 7pm, curtains and blinds drawn, with an ice pack on my feet, watching a programme about Scottish Islands. Like an 80 year old! Today I went to work but really didn’t feel well at all.

I have theories...... I had blood taken this morning, I may have an ear / sinus infection starting to creep in, I walked back to work in 30 degree heat and was later than usual eating my lunch. Which might explain why I got a little dizzy. I’ll admit to a mild panic..... the last time I got an infection I ended up back in A&E. This time I’m pretty content all will be ok as long as I’m careful. My bloods were being done today anyway so I’m being well looked after by my GP surgery. 

Now that I’m sensible and don’t take chances, I’ve taken tomorrow off and plan to rest up over a long weekend. I’m not taking any chances. It’s stupid and it’s selfish to the people left to pick up the pieces if I overdo things. Of course, as soon as I decided this and had some food, I started to feel better...... so I could very well be being over cautious in this instance. So be it. I’m erring on the side of caution. I actually managed to achieve loads in work today anyway (helped by a very early start) so I’m happy I’m doing the right and sensible thing by taking an extra day off.

I’m pushing on with the steroid reductions though. Monday will see me down to just 2.5mg...... at last, the end feels really in sight!! Even if the reductions are what is making me feel bad, I’ve decided it’s better to feel truly awful for a short period of time than to feel mildly awful for an extended period. Let’s just get this done. With all the bad stuff there is also good....... my feet are almost normal sized again most of the time, I’m not quite as obsessive about lists and planning, I’m sleeping better at night. 

It’s great that I’m such a naturally patient and easy going person..... little blips don’t cause me any concerns and I’m excellent at slowing down....... Haha!! I’m learning! Xx

Strangely drawn......

Having a brain tumour has undoubtedly led to some changes in my personality. Not in a bad way, I don’t think. And maybe it’s not changes, so much as an emphasis.....  I pay more attention to people, I laugh more, I enjoy life more..... I hope I always did those things, but now I do it with very little care for what others think or say about it.

Sometimes I think it’s because of the tumour. Sometimes I think it’s because of the drugs. Mostly I think it’s because of the life shock and the wake up call I’ve been given. I can be very spontaneous and sometimes it can all feel a bit surreal. 

I’ve found that, whilst my short term memory can be a little ‘off’ at times, I regularly get back memories from a very young age. This has often been a comfort to me, but can be odd too. It’s a bit weird to suddenly remember being read ‘Wind in the Willows’ at under 5 years old and then read it at 42 years old and fall in love with it all over again.

I also find it fascinating how my relationships have changed and grown since my diagnosis. In particular I notice myself instantly drawn to people in sometimes really strong ways. 

Today I had a conversation with a stranger that led to me unlocking a childhood memory..... simply because it got me thinking about talking to strangers. I’ll tell the story of today first, and then the story of the unlocked memory....

This morning we went to the supermarket. A necessary evil. The fridge was looking a bit bare and I’m trying to eat healthily, particularly now that I’m nearly off the steroids. There’s “puppy fat” to be lost! When there I found myself standing beside an older man. I felt instantly drawn to him and had a brief conversation about crackers. Does anyone actually know whether it’s better to eat them than brown bread??!! I’m totally confused and suspect the ‘healthy options’ being advertised are often pure lies. Sometimes I think I’d be better with a Snickers than a ‘healthy’ random grain and fruit based bar. Anyway, we spoke briefly and moved on. But I had a feeling about him..... I wanted to talk to him more. I bumped into him again the next aisle up. We started to chat again (as my poor hubby tried desperately to take over the shopping I’d more or less forgotten about doing!) 

So who was this random man? And what did I gain from talking to him? Well, I kid you not. It turned out that Norman is a London based former prison officer who likes to visit the North Coast for a few months every summer. He’s in his 80s and holds an Imperial Service Medal that he was awarded at Buckingham Palace. He told me all about it and how much he’d enjoyed his day there meeting Princess Margaret. He has been living with a brain tumour for 11 years and now walks between 4 and 10 miles per day. He does charity work and believes positivity can save your life. My day was genuinely enriched by meeting and talking to Norman. I hope I did the same for him. It’s experiences like this that start me wondering about life’s great plans for us. I’m still not sure about the ‘one higher being’ thing, but it’s difficult not to believe things are mapped out in some way.....

I’ve never had a problem talking to strangers. I can now clearly remember having to write ‘What I did at the weekend’ for school when I was still living in Scotland (so, under 7 years old). I wrote about how I had fallen off my bike and been helped by a man who’d taken me home in his car. The reason I remember it so clearly is that I was dead proud of my story, but I got into trouble for it! I can still see the teachers writing on the page “An excellent story Tricia, but you should never accept lifts from strangers”..... A fair point. The memory of this event is now so clear that I can even picture the road I was on when I fell. And my red Raleigh bike with the chunky tyres that I loved so much. My sister was with me...... I must ask her if she remembers it too!

I’ve had a week of basking in embarrassing levels of congratulations and praise following the posting of my TedTalk onto our internal intranet and the announcement of the BEM. It’s been surreal but incredible. I’m trying to enjoy it without trying to justify myself. Just accept the compliments without question..... something many of us aren’t always great at. I spent yesterday evening laughing and sharing quality time with 4 of my dearest friends, and today with hubby and then inadvertently meeting Norman. It’s not difficult to stay happy when your eyes have been opened...... 

What a wonderful life! Xx

A wee late addition to this entry..... I forgot to tell you how I started my day...... By watching James Cordon doing carpool karaoke with Paul mcCartney. There was no better way to start it! I cried three times from the sheer joy of it. If you haven’t watched it already then go and look it up...... I promise it’ll make your day.  Xxx

Singing, working, talking, winning

I’ve been busy! After a bit of a slump as I started focussing on getting rid of the steroid medication, I’ve hopefully started to break through to get past. In the past 2 days I reckon I’ve lost a stone in weight (which appears to be fluid, mostly from my feet and knees!) I’m undoubtedly much more tired than I was and I’ve had headaches and joint pains. But I knew it’d be short term pain for long term gain, so I’ve gently pushed through and kept my eyes on the prize. That prize for me will be taking my last steroid on 7th September (all things remaining equal). It feels like another line in the sand. Another victory. Another step forward.

I’ve been singing in a Well-being choir and just singing in general.

The TEDxTalk I delivered at work has just been uploaded onto our internal intranet. My accent is broader than I could ever have imagined and my jokes need some work..... but I’m glad I did it. Another challenge faced.

I’m still delighted about my last scan results and remain positive that I can keep this thing at bay for many years. I simply refuse to lie down to it. Although I am definitely not pushing myself too hard..... everything is done in an unpressured way and at a slow pace. It’s all about doing enough to keep me busy and give my life purpose, but learning the lessons from past mistakes. I don’t push myself too hard and I make sure my priorities are right. Family and friends first. 

I’m negotiating with Macmillan to sort out what tangible outcomes we can give from the money everyone so generously donated. I’ll report back as soon as I get it all sorted out. 

I’m loving being back at work and am excited about being awarded my BEM at Hillsborough in a few months time. I’ve even booked a hotel for the night as a treat for hubby and I. We priced all the poshest places, but old habits die hard..... plus you can’t accept a “working class gong” and then swan into a fancy hotel. Good old Premier Inn for us..... £39 well spent!! Perfect. 

I’ll keep singing, however badly. One foot in front of the other. Good enough! Xx

Royal visits, lighting up and learning to fly

‘Learning to Fly’ by Tom Petty was the song to start the tears today. 

Thankfully they were tears of happiness and because I got myself all overwhelmed yet again. 

Prince Charles was visiting NI over the past few days. My royal visit was of a different type however....... I had an appointment with oncology at the Royal Victoria Hospital this morning. 

Rationally I knew I’d nothing to be scared of as I’d already had my latest scan results in writing..... and how could I ever forget those amazing words “....stable or indeed slightly improved....” Despite this, I’ve been nervous for days. The RVH doesn’t hold happy memories for me and even the car park queue can be enough to get my heart racing. The dread of having to go up has been sitting in my stomach and chest all week so I was glad to get it over with. 

Thankfully I saw a lovely oncologist. I liked him. He was warm, explained things, didn’t rush me and just generally had a good bedside manner. He discussed my most recent scan with me and, to paraphrase, this is roughly what he said;

When I get an MRI brain scan with dye, it shows more aggressive parts of the tumour. They light up. In my previous scan I had two areas that were significantly lit up. The most recent scan shows one of these areas has reduced in brightness and size. The second appears to have disappeared completely. You will understand why I was a little overwhelmed. These results indicate the treatment has worked; the surgeries, the radio, the chemo. It may even be continuing to work. It’s difficult to know yet, but short of a miracle, we couldn’t have asked for better results. 

We still have to see what will happen when I’ve finally been completely weened off the steroids I’ve been on for far too long, but every medical expert I’ve spoken to seems content they’re no longer serving me in terms of treatment. The harsh reality is that my body is just addicted to them now. I have gained 4 stone in weight, I feel bloated, I get painful swelling and fluid retention in my joints and stomach, and I constantly crave food, particularly sugar based items. In order to sort this out, in consultation with my Dedicated Nurse (provided by a charity. My Belfast Trust dedicated nurse doesn’t have time to talk to me....), I have been dropping my dosage every two weeks. It’s been tough going. I’m often very tired and I get horrible joint pains. Sometimes I get a bit emotional and I can get dizzy spells too. But it’s worth it in the long term and I just adjust how much I do as necessary. I’ve learnt my lessons from before and listen to my body. 

Today was yet another big, emotional day. Yet again, in a good way. I now have 3-4 months until my next scan. September will be another big month for me - I should take my last steroid on 8th (but who’s counting?!), I should have a scan, and my British Empire Medal investiture ceremony is that month too. That gives me the summer to take things nice and slow, work my way off the steroids, settle myself properly back into work, and just generally get used to real life again. It’ll never be quite the same as it was again...... truthfully, I’m not sure I’d want it to be. I’ve gained too much in terms of relationships and life lessons.

A big day but a good day. Royal visits, lighting up and learning to fly....... living with xx

Fundraising update

Latest Triciafest fundraising update...... £7,926 in the Just Giving account and I also have another cheque for Macmillan for £100. Total of £8,026, which is fantastic!! 

Huge thanks again to everyone who helped; be it through giving up your time, donating cash or prizes, attending the gig etc etc! I know all the best folk.

I’m currently talking to the Macmillan fundraising team about how your generous donations will be used to help local cancer patients and their families. I’ll report back once we have final decisions but I’ve worked hard and have gained agreement that the money raised will definitely come back locally and be used for very practical purposes. It’s not going into a big national pot to pay for admin or the like. Tenacious is my middle name! 

Thanks again to everyone who contributed. I’ll update with the tangible outcomes as soon as I can. Be very proud of yourselves. You’re making a difference. Xx

‘The working class gong’

I was told around 2 weeks ago that I was going to be named in the Queens Birthday Honours list. I was given a letter that I looked blankly at, before handing it to my husband, saying ‘You need to take that. I can’t comprehend what it means!’ I then spent the rest of the day spontaneously bursting out laughing and crying. So just generally being overwhelmed.

Every time I’ve thought about it since, I’ve felt much the same. Do I deserve a medal?? Of course not. I’ll admit that the cynic in me rose up for a short time and I began to worry it was a ‘sympathy medal’. But you know what? I’m not thinking like that ever again. 

I am being awarded a British Empire Medal. Nicknamed “the working class gong”. An unfussy medal, for ordinary people that do a half decent job. Am I proud to be awarded that?? Damn right I am! Overjoyed. Proud as punch. Lapping it up! 

Being rewarded for services to policing is something I hugely proud of. After 16 years, I genuinely remain passionate about the organisation I work for. It’s full of good people, doing amazing things. My enthusiasm has only grown since I became unwell. Returning to work has restored a purpose for me. It allows me to still add some value and maintain a degree of independence. The support I’ve received from PSNI has allowed me to do this in a safe and unpressured way. Is it difficult to maintain my enthusiasm? Not one bit!! I used to sell pest control for a living........ I’ve never, ever taken my roles in policing for granted.

Unashamedly delighted, I’ve celebrated with a close to perfect day..... family time, lunch and then a sea paddle in the sun with my sister! 

If I can get a medal then there’s a chance for anyone! Seems sometimes all you have to do is your best.  

Xxx

‘Normal’ morning....

How many times have I said I crave a ‘normal’ life?? Well, sometimes ‘normal’ can mean a catalogue of things going wrong! Thankfully my sense of humour has always held and I’ve done nothing but laugh this morning, following an almost unbelievable sequence of unfortunate events!

I was up early as usual. I had a good night’s sleep last night after a day working in Belfast and an evening spent rehearsing at our work Wellbeing Choir practice! Then I received a phone call from my lift to work - my wonderful friend who has done so much for me had forgotten she had to go somewhere else and so couldn’t collect me this morning. She had sent me a text but just discovered it hadn’t gone. No problem, I can get myself in another way........

N.B. everything in the following paragraphs is 100% true and has not been exaggerated in any way. This is ‘normal’!!

Plan A - My neighbour will be dropping her kids to school. I’ll ask her if I can hitch a lift. I opened my front door just as she drove past....

Plan B - My Dad. I rang him but he didn’t hear the phone, so no answer.

Plan C - Taxi. I rang my usual company but they were fully booked for school runs.

Plan D - Bus. I walked round the corner of my cul de sac to see the town centre bus drive past the end of the road! 

By this stage I’ve got the giggles because I couldn’t make this stuff up!! I’m on the phone to hubby, telling him I’m going to start to walk to work, confident someone I know will stop and give me a lift on the way past. Truthfully, I was quite enjoying the walk. Lovely morning and my knees and ankles are still full of steroid induced fluid that needs walked off. 

Plan E - Walk. All very pleasant, but it’s a distance of about 2.5 miles...... maybe just a wee bit too far.

Plan F - Back to Plan B! Where would us girls be without our dads?? He rang me back and was straight up the road to collect me. 

I got into work, only to discover I was locked out of my office! Easily rectified.

The outcome?? 

1. I was about an hour and a half later into work than I expected to be. No-one is worried about that.
2.  I had a lovely morning walk. I saw my dear old dad unexpectedly. 
3. I was reminded that i have an almost normal life! And that often it can be amusing! Yet again I find myself smiling and enjoying life, despite it seeming to have gone a bit wrong....

Sometimes you miss the bus. Enjoy it!! Xxx

Thunderbolt & lightening

I could break into the Ted thunder song, but I don’t want to offend anyone! I’ll stick with Queen;

 “.....thunderbolt and lightning, very very frightening me!”

Gah! It’s not frightening me, but it’s horribly uncomfortable. Thunder does not agree with brain tumours.... I’ve always struggled with ‘thunder headaches’. Like numerous other possible ‘in hindsight’ symptoms,  I used put it down to dodgy sinuses. Now I suspect it could’ve been indicative of what was going on in my wee brain. 

My head has been thumping all day. Like someone has their hand around my brain and is literally squeezing. My ear feels ‘full’ and I feel tired and a bit dopey. Now the rain has finally hit, I’m hoping it’ll clear the air and my head with it.

On the bright side, I reckon I’ll sleep well tonight! Which is good because I’ve been asked to give another TedTalk tomorrow. To the church group of a friend. I’m happy to do it..... if people want to listen/read, then I’ll continue to talk/blog. The hope remains that telling my story helps me but also hopefully helps others in a small way. 

Other positive news is that I’m continuing to reduce my steroids. I’ve been on them far too long and I have been assured they aren’t serving me any purpose in terms of treatment. Stopping taking them is a slow process, with small bi-weekly drops. I’m persevering though. Another drop this Monday, with a view to being off them completely by the end of the summer. Another big step forward. After that I’ll start looking at the anti seizure medication. (The one I still take, as opposed to the one I was poisoned with!) 

I’ve been vocal throughout about my dislike of medication. I appreciate I may always need to take anti seizure meds at some level, but my aim is to take as little as possible. I’m not stupid and will of course discuss any decisions with the experts, but it’s my body. I also don’t want to live my life completely dulled down or unnaturally drugged up. 

It’s frustrating but I’m learning to be patient with these things. Mostly.....  As I sit here, writing this, a little bird just landed on top of my open patio doors. He sang me a little song and then flew off to shelter from the rain. Moments like that remind me everything is ok and help me relax. 

My other positive news for today is that our Macmillan fundraising total is currently an amazing £7,336. The generosity of my family and friends has been wonderful. Thank you. I am discussing with the charity about how this money will be used to help local cancer patients and their families. Tangible outcomes, not cash going into a charity money pot to be spent on admin or the like. Watch this space; I’ll keep updating. 

“Galileo, Galileo....”!! 

Queen- Bohemian Rhapsody 

Xxx

Macmillan fundraising update

Quick Triciafest update...... the total money raised so far is phenomenal! We are currently sitting with £7,211.80 in the Just Giving account. 

I can’t thank you guys enough, in particular the DRC crew, my husband, my son, my sister, all the members of the bands that gave their time and energy (Fragment, Trucker Diablo, Nasa Assassin, Gasoline Outlaws & Lo Mejor). And of course YOU!! You lot who attended the wedding and/or gig and/or handed over your hard earned cash. There’s still a little bit of cash from Macmillan buckets to be added in too. 

Next steps - I have made contact with our local Macmillan fundraising team and we are discussing what the money raised will be used for. I will report back in due course via this blog, the Facebook Triciafest events page and my personal Facebook account. Please share the updates so everyone who’s contributed is kept informed. 

In the interests of transparency, you can see all the payments by looking at the Triciafest Just Giving Page; the breakdown is as follows -

Triciafest ticket sales     £1,070

Triciafest auction.          £1,261

Triciafest raffle tickets.  £442.80

Triciafest t-shirt sales.    £158

General donations.         £1055

Wedding gifts.                £3225

TOTAL £7,211.80

Not giving up living to live

The classic NASA Assassin number..... “I’m not giving up living to live!” pretty much sums things up.......

What a day, what a night?!! The wedding was perfect. My sister was beautiful, everything went to plan, and the bride and groom pulled it out of the bag with an amazing groom speech and a surprise first dance that will no doubt go viral on YouTube later on today! 

I had everything all planned out perfectly to make sure I got down the road to the charity Triciafest gig after. Everyone knew where they had to be...,. I had my son ready as my Taxi. There was even a spreadsheet!....... which I deviated from....... resulting in 6 of us getting stuck at the Tullyglass Hotel and arriving 2 hours late for my own gig. What a numpty!! But, seriously, what is with the lack of taxis in ballymena on a Saturday night??? It was early! I know the footie was on, but....... 

2 hours late I may have been, but what a night??! Fantastic turn out and a smile on every face! We sang, we danced, we laughed and we raised a small fortune for Macmillan. I will report full amounts in the next few days, once we get it all counted up and put through the Just Giving account. 

Yet again I cannot thank those involved enough. The bands, Derwin and team at the Club, the auction/raffle prize donators, family, friends and everyone who turned up and rocked out. I know who the decent people of this world are and I am honoured to have helped facilitate the raising of a serious amount of money to help local cancer patients and their families.

I am currently lying in a four poster bed in a swanky hotel, wondering if hubby is ever going to wake up and take me for breakfast! I’m starving!! I am a bit tired, having climbed into bed after 2am, but I am happy and physically don’t feel much different to usual tbh..... I’ve a week for rest and recouperation. Not to mention Macmillan money counting and ideas hatching. I’ll report back as soon as I can xxx

“In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.”

Elizabeth Gilbert

The big day is finally here!

Today is a BIG day!! Today my sister is getting married. Despite living in England, my selfless sister and her husband-to-be decided to have their wedding over here in Northern Ireland, purely to accommodate the fact I was so unwell. They basically gave me their wedding, even down to their wedding presents (which they decided should be donations to Macmillan). 

As I came through treatment and began to feel a bit better, I started to wedding plan..... When someone puts their whole life on hold for you for over a year, the least you can do is show a bit of gratitude! The fact that my sister is very laid back made things easy really..... I just mostly took over and did what I thought looked like fun! I hope it gives the whole family the chance to relax and enjoy themselves. To forget about brain tumours and stress. The facts are the facts...... I’m doing well, physically and emotionally. I’m still on a journey, but I am happy and genuinely enjoying life. 

As if a wedding wasn’t enough in one day...... tonight also sees our charity rock gig, Triciafest! The name, whilst somewhat cringeworthy, stems from a very old joke and just kind of stuck. Having spent years attending rock music gigs, when I was diagnosed I was approached by a friend who suggested his band play a gig in aid of the charity of my choice. I approached another friend who runs a small club and a couple of other bands. Everyone jumped in without hesitation, selflessly giving their services free. More bands stepped up and offered to play and when we ran out of space on the bill, yet more gave auction and raffle prizes.

I opened up a Just Giving account and cash started rolling in. People who couldn’t attend the gig or who just wanted to donate some money for their own reasons, wedding presents, auction money...... 

I have secured with Macmillan that all money raised stays local. It’s important to me that we can report back to people what their money has been used for. Tangible outcomes for local cancer patients and their families. With one in two people now expected to receive a cancer diagnosis in our wee country, it’s even more important that people stay positive and use their experiences to effect change. It’s not always easy, but the last 16 months have proven to me that anything is possible if you keep your head up. Surrounding yourself with the right people is a massive part of that journey.

As of this morning we have raised over £4,100 and that doesn’t include money from ticket sales and various other sources!! Completely overwhelming. I officially know the best people in the world. We are making a difference. We will not let cancer, our crumbling Health Service or ineffective politicians beat us!

Conscious I’m moving closer and closer to a Jerry Maguire moment..... I’ll sign off before I become completely overwhelmed and spend the day an emotional wreck! Let’s go get my sister married. And start having fun!!

Today’s random end quote, from the mighty Eminem....

“You only get one shot, do not miss your chance to blow. Cos opportunity comes once in a lifetime....”

Making a difference

We are now just 2 days away from our big fundraiser! We’ve already raised almost £2,500 and that doesn’t include ticket sales etc. Updates on the gig, including auction etc are available on the Facebook Triciafest events page. 

https://www.facebook.com/events/315766562268227/?ti=icl

Latest update on auction items as follows-

Bidding ends at midnight tonight. 

If it’s confirmed you’ve won the item then payment can be made via the Triciafest Just Giving page. Please remember to include your name and a brief message, reminding me which item it is you’re paying for! If you don’t use Just Giving then contact Derwin or I and we will arrange to get your money into the overall pot in another way!

Thanks again to everyone who has donated auction items and to the bidders. Absolutely blown away by everyone’s generosity. 

Remember, every penny from Triciafest will go to help local cancer patients through Macmillan. I’m very excited at the prospect of being able to report back to you all the full amount raised after the event is over and the counting is done. 

I also promise to keep people up to date about what the money is going to be used for. It’s been important to me from the start that there are tangible outcomes rather than just firing money into a big pot. I’ll make sure your hard earned cash is used for good. 

Love you guys. See a lot of you on Saturday night! Xx

I know why the caged bird sings....

I regularly question my need to keep blogging and always be telling people my story. I realise that many are not interested and are very bored with the whole thing. Sometimes I feel the same way! I get embarrassed by the attention and wonder why I’ve brought it to my and my family’s door. I used to be so private, but now I find myself posting constant selfies and health updates on social media, telling my story to the world. 

Every so often though, I am reminded why I keep doing it...... 

Yesterday, hubby, a couple of dear friends, and I, joined Clodagh Dunlop for a Step out for Stroke walk. I met Clodagh through delivering the TedTalk at work and was instantly drawn to her. A truly inspirational person, she had a stroke and experienced ‘locked in syndrome’. She has also been very vocal about her experience. Talking to her again made me think of caged birds singing. Maya Angelou’s famous book is  a fairly dark read, and it’s about very different experiences, but it still tells of strong people using their experiences to push for change and help others. I hope I am doing what Clodagh is doing...... giving hope and helping keep others positive. Whilst also helping ourselves by publicly setting ourselves challenges and reminding ourselves of every achievement, no matter how small. 

I am proud to call Clodagh my friend and I was proud and inspired to Step Out for Stroke with her. Illness might sometimes feel like a cage, but we will keep singing.

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”

Maya Angelou

On the subject of music....... and cringeworthy levels of attention....... the charity rock gig we are organising in aid of Macmillan is now just 5 days away! It’s going to be a brilliant night, with five superb local bands. Everyone is generously giving their time and there are also lots of auction and raffle prizes. Check out the Triciafest event page on Facebook. If it’s not your thing then you can donate via Just Giving (just search for Triciafest and you’ll find it!)

All money raised will go back to our local Macmillan team to help local cancer patients. It is now believed that one in two people in NI will develop cancer; up from one in three. You never think it will be you, but you might very well be wrong. It’s not necessarily a death sentence, but there is so much more that can be done. Caged birds need to keep singing so we can sort out research and some joined up thinking. Xxx

Circadian rhythm repair.....

Does anyone know where I can go to get a new battery in my circadian rhythm?? It needs repaired..... In fact, the whole family could do with a bit of a service in this department!

In my ongoing bid to get on with as normal a life as possible, I have pushed through reducing steroid medications. This is undoubtedly impacting on my levels of tiredness, but is also helping me get healthier sleep at night. I still never sleep the whole night through, but I find it easier to get back over to sleep after I wake up. So I’ll wake at between 3 and 4am as usual, but can often then doze on and off until after 5.30. 

However, after such a long time, you don’t just “fix” your sleep pattern. It’s still troublesome and I’ve also managed to break hubby’s sleep pattern a bit too..... though I still admire his ability to even share a bed with me at all! After the horror of seeing my initial grand mal seizure back in January 2017, I’m amazed he ever slept again! I have friends who get uncomfortable if I even blink funny, in case I suddenly spin into an epileptic fit, yet poor hubby shares a bed with me every night and puts up with all my nocturnal wanderings and adventures. Only twice has he delivered ‘pay back’....... once a few weeks ago when he woke me at 3.30am by sneezing onto my face, and then the other morning when he woke me at 4am because I had gradually crept over to his side of the bed, leaving him with an inch of space and roasting hot! 

Last night was my night to start again..... Our son was working late last night but then had to be up early this morning for work again ..... he’s not an early bird and asked if I’d help and make sure he was up by 0630. No problem for me! I heard him up and duly woke hubby up - “that’s him up. I can hear him moving around. I’m just going to lie a second and then I’ll make doubly sure he’s on the move.” Hubby’s circadian rhythm told him something wasn’t quite right...... “Are you sure?? Is that not him just coming home??” And then it dawned on me..... oops!!  I’ve learnt to tell the time by the light in the room and by the birds (they also tell me the weather..... truth!) And so I realised my mistake; the room was too dark and there were no birds singing......Hmmm...... dare I look?? I guess I should..... 02.07am....... oops!! Sorry honey!! Poor son only getting home from work, not getting up! 

So my circadian rhythm remains faulty. BUT birds talk to me and tell me what the weather is like! As I finally ditch the steroid medication, I can’t wait to sleep through a whole night again, but I’ll never stop listening to Mr Blackbird, Mr Robin and Mr Crow telling me the time and all about the weather. That’s what being unwell can do for you. A scare can make you appreciate the things we never normally notice because our lives are too busy. 

I’ll fix my circadian rhythm and set it to Wild Wood and/or Wide World time if I must, but I’ll always be sure I spend time going back to the Riverbank to talk to the birds. 

Priorities. Simple things. Living with....

“Gradually the Rat sank into a troubled doze, broken by starts and confused murmurings of things strange and wild and foreign to the unenlightened Mole; and from that he passed into a deep slumber.”

(The Wind in the Willows by Kenneth Grahame)

Sheddin and ditchin.....

I told you normal service would resume and we’re definitely getting there! I’ve still got a bit of a virus thing going on so have a snotty nose, sore ear and throat. Learning lessons from the last time I picked up a sinus infection, I’m making sure I take paracetamol and am looking after myself. 

Feeling spurred on by family and friends, I’ve continued with my steroid reduction. The lunchtime dose is now gone completely. I’ll admit to feeling tired, a bit dopey at times, and my joints are still really sore, but I’m motoring through it.  

My overnight sleeping habits are slightly improved and the very attractive fluid retention comes and goes now, instead of being a permanent state. Top tip - magnesium gel/ oil spray/ moisturising cream for joint pains. It’s been like a miracle for me! Immediate relief from pains that were literally crippling me. 

I’m still carrying a couple of extra stone, but ditching the steroids and working hard on my new healthy diet willl sort that in no time. One week on Saturday until my sister’s wedding...... she’s sheddin for the weddin and I’m ditchin for the hitchin!! 

My lack of ‘lunchtime high’ is undoubtedly leaving me more tired and sometimes a bit grumpy and more addled than usual. But it’s all part of getting a sense of ‘normal’ back, and I’m delighted at the prospect of being off the steroids completely later in the year. 

Having said all that, I am definitely not going back to the old stressy person that I used to be. I’ve learnt a valuable lesson about life’s priorities. I’ll continue to work because I’m passionate about what I do and believe I can help make a difference. But my first priority is my family. With plenty of time also reserved for relaxation, time with friends, and just generally being happy. 

As Tessa Jowell has shown us; there’s a big difference between dying from and living with cancer. I’m doing the latter. For a long time to come.

Don’t forget we’ve a charity rock gig coming up. Plenty of opportunity to dig deep for my Macmillan heroes. 

www.justgiving.com/triciafest

Xxx

Frustrations, fears and friends

Thank goodness for the latter...... helping me deal with the former!

Frustrations? 

I remain hugely frustrated at the ongoing drama of the damage done to me by prescription medications. I have now been on a heavy steroid medication for 16 months. The doses have varied along the way, but I’m pretty certain they are doing me a complete disservice now. I don’t believe they’re actually ‘treatment’ at the current time.... rather just yet another oversight that has ended up leaving me on a heavy duty medication for far too long. I’ve been on them so long that I can’t just stop taking them and have to gradually reduce them down. It’s really difficult. I’m not going to lie. It affects me both physically and mentally. I’ve had anxiety, physical pains that have reduced me to tears, and generally can sometimes feel pretty awful. 

Thankfully my local medical support team (yet again, not my oncology multi disciplinary team) are helping me with this. After so long on them though, I am now essentially fighting a form of prescription drug addiction. Ironically, this is a subject I’ve written many analytical reports on for work in the past. Northern Ireland has a huge problem with over prescribing, and prescription drugs are responsible for many more deaths than the likes of heroin and cocaine etc. Some of the abuse is illicit of course, but much of it is also led by over prescribing.

I will get past this stage of the journey, but it’s horrible, and something I’m writing honestly about in the hope of helping others. Medication is an essential part of most people’s cancer treatment and I’m not suggesting anyone don’t take the advice of the experts. However, I’ve also learnt the hard way that doctors make mistakes and not all of them are paying attention. To some, you are a number. They are overworked, some are extremely jaded, and some are just crap at their jobs! It’s not the first thing you think of when you are given a diagnosis of incurable cancer, but unfortunately you need to try and take some control over your own care. You shouldn’t have to, but the reality is that our Health Service isn’t always getting things right.

This leads on to my second major frustration of the past few days..... We have managed to unlock additional funding for the Health Service. It’s all over the news. Great! What should we spend it on?? Joining up systems? Cancer care/ research/ treatment for the one in two people now being diagnosed with it? Additional care for our increasing older population? Did anyone do some analysis to see where the money should best be used? No. Of course not. Somebody randomly picked “more midwives”. Now don’t get me wrong, midwives do a great job and are of course needed, but....... would money not be better invested in dealing with the biggest cause of deaths in our wee country? 

http://www.niassembly.gov.uk/globalassets/documents/raise/publications/2017-2022/2017/health/3217.pdf

Fears?

See above! I continue to fight hard and my scan results are better than I could ever have expected. Generally I remain positive and I continually remind myself of how lucky I’ve been, how loved I am, and how well things are going. And yet..... every so often...... there remains a shadow hanging over me. A dark cloud that just sometimes can feel like it’s literally crushing me. Like hands pushing down on my head and squeezing my chest. Thankfully it’s not a constant state, but it can be almost debilitating when it strikes at its worst.

Friends?

Keep them close. Along with family, if you’re lucky enough to have a good one. My family is small, but my husband, son, sister and father have undoubtedly ensured my ability to get through the hardest parts of this journey. 

I’ve also been lucky enough to have friends around me who lift me when I need it most. Yesterday I was having a rotten day. I was sore, feeling unwell, tired and just damned grumpy! I had an appointment to go and visit work colleagues in Belfast. I say ‘work colleagues’, but the reality is that those lines have completely blurred now. Many colleagues have become so much more. True friends. People I like and who do so much for me in so many different ways. My trip to Belfast yesterday turned into a lovely, positive, exciting and happy day! Thanks to some amazing friends. Although it may not seem it from this blog entry, it lifted my mood hugely. I shared deep conversations, laughed myself sore and was overwhelmed by an act of kindness and surreal turn of events. As a result, I slept better last night than I have done in ages. Today I’m fighting against a cold and am feeling a bit grumpy again. But I have thoughts of yesterday and all the positivity around me to drag me out of the doldrums. 

A bit of a negative blog, so I’ll end it on a positive note.  I am here, I am ‘living with’, I am surrounded by love, I have some really exciting things to look forward to. Not least my sister’s wedding in just over a week’s time. Plus, of course, our charity fundraiser rock gig in the Diamond Rock Club. I’ll end with a plug for what’s going to be a brilliant night out...... Doors open from 18:30, five local bands giving their time and energy up for charity, first band on at 20:00, lots of exciting auction and raffle items, all money raised in aid of local Macmillan charity, footie on screens downstairs. Come along! Or if it’s not your thing then you can still donate via Just Giving (just look up Triciafest event..... I know, I know.... cringe..... it started as a joke but it stuck! It’s for charity, give me a break!)

Right, I’m off to give myself a shake and get away from screens. Apologies for the rant and the slight glumness. Temporary state. Normal service resuming now xx

With teeth like piranha.....

“Oh the midges, the midges, im not gonna kid ye’s....... with teeth like pirhanas, they’ll drive you bananas...... if you let them get under your simmot!”

Ear worm for the Scots amongst you today! Why am I singing about midges? Well, I’ve been thinking about the West Highland Way. My sister, brother in law and I were due to walk it in April last year. I had raised over £1,000 for The Cedar Foundation charity. Unfortunately we didn’t get to do the walk, though I promise the charity got the money regardless! In preparation for the walk, I had been out hiking at every opportunity. Poor hubby was being dragged out every weekend, even though he wasn’t actually planning to join us on the WHW! 

The night I took the seizure that identified my brain tumour followed a day hiking with a good friend of mine. We had walked around Downhill/ Mussenden and Castlerock. Since diagnosis I have returned to Downhill forest and Castlerock beach on a number of occasions...... I bear it no ill will. Quite the opposite..... it remains a place I love to go. Eating a picnic and visiting the Manannan Mac Lir statue at Binevenagh mountain was one of the first outings hubby and I went on after I got out of hospital after my two brain surgeries in March 2017. 

Over the past 15 months since my diagnosis we have measured and hugged trees (and each other) in Downhill Forest, walked on Castlerock beach (I even enjoyed some paddling with my sister), and cried at the viewpoint. Sometimes I feel like I ‘lost’ 2017, but every so often I think back to doing these things and I realise how much  living I have actually been doing. How much pleasure and happiness I have had, and continue to have.

Today the National Trust were launching a Tree Trail at Downhill Demense. It was a beautiful, sunny day. Hubby and I went and spent 2 hours on a very gentle walk around the gardens there. A simple thing for most, but hugely significant for me. For a number of reasons....... firstly it’s the furthest I’ve walked for 16 months. I’m still using a walking stick because I can get dizzy and sometimes am a bit wobbly on my feet, but the walk today was designed to be accessible for all and I wasn’t the only person using walking aids. 

So that’s why I’m singing today. I’m singing because I’m happy! I’ve had a lovely day with hubby. Out in the fresh air, proving to myself what I can do, without pushing too hard. Continuing to fight my way through the fatigue of getting rid of steroid medications, continuing to keep my spirits up by spending time with the most important people in my life, continuing to live life and keep my priorities in the right order.

West Highland Way?.... watch this space..... 2020 perhaps?? Maybe even with hubby in tow!

Living with...... xxx

Stable or indeed slightly improved

“....Stable or indeed slightly improved....” in more ways than one I’d say! 

I’m still delighted by my scan results letter. I’m not naive. I know I’m still fighting a brain tumour, but i also feel like I’m getting my life back. In fact, I’m getting a much better life back! One that I value far more than I ever did before. 

I am spending quality time with family and friends. I am working. I am raising money for Macmillan. I am getting excited about my sister’s wedding. I am working on my diet and exercise. I am getting my medications down as low as possible whilst ensuring I’m still kept safe. I am doing it all carefully and at a slow pace. I am keeping myself away from stress or anxiety. I am learning the lessons. 

I am sometimes very tired, I get horrible joint pains and horribly painful indigestion, have put on 2 stone and have a big moon face. I can be a bit forgetful and get a bit dizzy, but I am coming back to being ME! Thanks in large part to my Support Team. In particular my hubby, sister, son, Dad, and my ‘inner circle’ (the GGs).  

As ever, thank you. Best Team in the world. Wouldn’t be here without you. I know I’m still a bit nuts, but I always was......

“.....stable or indeed slightly improved....”

Xxx

Crashing through stars

Yesterday was such a big day. It’s amazing how a simple letter can have such an impact. I was on a high all day. Although I have to admit to being a little manic at some stages..... 

Somewhat weirdly (and I blame the steroids for this), ‘high’ moods like yesterday often result in me obsessively craving sugar. I am ashamed to say I ate so much yesterday that I left myself feeling physically sick. That’s not right...... disgusting and really unhealthy. I ended up with a stomach like a bowling ball, feeling uncomfortable yet still completely hyper.

Working on my food habits and diet is a big part of my strategy for moving forwards and beating this thing. I’m writing honestly about it because I’m sure I’m not alone in finding it difficult to manage my way through. Steroids do strange things and I’m glad to be getting off them. Everyone has advice about what you should and shouldn’t eat..... googling it will just confuse even more. 

Personally, I’m trying to keep it simple. I came up with my plan and discussed it with my dietician, who agreed. Ive attached a photo of what I’ve stuck to the side of my fridge! Cutting the sugar will be the biggest thing for me, but I’ve read everywhere that it feeds cancer cells..... not worth the risks. I won’t completely ban it because then it’ll become a ‘thing’ and I’ll end up craving it more, but I am paying more attention to labels etc. Note - see all those bars that are being pushed as healthy etc? Read the labels...... you’d often be better with a Snickers! Ive got 3 weeks until I’m matron of honour to my sister. We’re ‘sheddin for the weddin’..... I’ve got 2 stone to get off..... bye bye steroids, bye bye ‘steroid baby’!

Last night I had my usual troubled nights sleep. The 3am’s strike every night, regardless of what I do. I was more content though and able to go back to sleep. A good part of the steroid reductions is that I still waken, but usually find it easier to go back over to sleep. This morning I even fell back asleep deeply enough to have a dream. I take this as a really good sign as it means I was beyond just dozing and was properly asleep. I don’t remember much of it, but I was on a rollercoaster with hubby beside me. The coaster carriage went up into the night sky and was flying through the stars. Ahead I could see a large constellation that I recognised as Ursula Major...... (in reality I wouldn’t have a clue about constellations!)...... but I couldn’t remember it’s name and for reason shouted out “MANILA”!! I have no idea if I actually shouted, or if I only imagined I had. God love my husband. I have no idea how he still shares a bed with me! At least he more or less got peace until 6am today...... patience of a saint.

Cancer is hard on the whole family. Not to mention the wider SupportTeam. I remain surrounded by stars. I promised a long time ago that I wouldn’t let you down. Let’s keep crashing through the constellations..... xxx

Scantastic......

It’s been a pretty overwhelming few weeks. Reducing steroid medications has been rough, I’ve been getting back into work, sisters wedding is getting close, I had a scan, and then there was all the news over my neurologist being under investigation. Nothing to cause me serious stress, but just lots going on at once. 

Then today I got a letter. The postman handed it to me as I sat in the car, waiting for hubby, about to go to Sainsbury’s. I saw the City Hospital stamp on the envelope and felt my heart sink. It’s about the neurologist, isn’t it?? This is my recall. Well, no, actually it wasn’t...... it was scan results. Good scan results. I’ve attached a photo of what it says (and am even sensible enough to cut off the top and bottom so I haven’t given my over 55,000 blog hits my full identity details!)  I have a photocopy of this letter pinned to my utility room door. I cried and I laughed and I cried some more. We could ask for no more. I’d have been delighted to hear ‘stable’..... ‘indeed slightly improved’ was beyond my wildest dreams. 

I’ve always believed deep down that I could beat this thing. I’ve always been sure I would live with it for many years. I’ve always tried to stay positive. But I’m not superhuman. I’m not the Wonder Woman some of you sometimes seem to think I am. Sometimes I lie and say I’m grand when I’m not really. Other times I tell the truth if I’m struggling, but then feel guilty in case I upset others. It has only been through time and the love and support of family and friends that I’ve slowly learnt how to stay calm, not rush and be kind to myself. 

To hear things are stable and may even be a bit better is like a tonne weight lifted off my shoulders. I would imagine all cancer patients would feel the same. 

There’s nothing else to say. I still need your support, I remain eternally grateful for it, and it appears I’m upholding my side of the bargain!

Living with...... xxx

Turning points and reflections

There have been some pretty huge turning points along this journey. And then there have been the slow improvements that you don’t always notice until you reflect a bit.

This week I’ve been reflecting a bit. Mainly following the news about my neurologist being under investigation. Which is still something of a weird one for me..... But as I said in a previous update, Dr Watt didn’t diagnose me. I’m one of the fortunate ones in that I’m confident my diagnosis is correct and have the medical records and scans etc to prove it. Plus I’m still alive! If it’s true that he’s made mistakes, then it’s awful for a lot of patients and families, but the reality is that it doesn’t change my outcomes. He was my neurologist when I was originally prescribed the drug that poisoned and almost killed me....... but remember that I took that drug for almost a year before the toxicity built up so much my body couldn’t take it any more. I was under the care of a different neurologist from July 2017, and an oncology team the entire time. So even if Dr Watt messed up..... he wasn’t the only one. They must’ve known he was being investigated and yet, even when I became critically ill in January 2018, they offered no ideas to the Causeway team. My local consultant and Macmillan doctor and nurse figured out what was going on and saved my life. Part of me finds that terrifying, but mostly I’m just really grateful. I will continue with my complaint because I know how important it is. My voice will be a small one now, compared to others who’ll unfortunately have a much worse story to tell. My heart goes out to families who’ve lost someone. I won’t dwell on what I believe to ultimately be a systematic failure, combined with some sheer incompetence and lack of care. Nor will I back down without some explanations and reassurances......

Moving forwards, I continue on my journey to stop taking steroids. It’s unpleasant, but I’m pushing through. My side effects continue to be insomnia, chronic indigestion (due to the huge amount of food I eat!), joint and muscle pain, tiredness, some difficulties concentrating, and some emotional dips.  I’m managing these side effects by getting strict with myself over food and diet, gently trying to walk through the pains, but I’m not pressuring myself and I am happy to take time to sit down and relax as needed. I’m trying not to be hard on myself if I forget things or do something silly. I am going at a very slow pace and being greatly supported in this by hubby, sister, son, Dad and friends. 

This morning I enjoyed breakfast with a good friend, and then cleaned the house. Now I’m looking forward to a quiet afternoon of sorting out ‘stuff’! Last minute wedding plan checks etc. 

Then I have a weekend with my sister visiting. Before time with my in-laws to celebrate a birthday, and then a Bank Holiday visit to see friends at their beautiful garden with hubby.  My Wind in the Willows...... live! 

So things are good. I’m good. I’m sitting in my sunroom/living room, watching the blackbirds that sing to me every sunny day, gathering grass etc to make a nest. Not a bad way to spend some time. 

Living life. Keeping my priorities right. Moving forwards xx

Another chapter for the book.......

“2,500 Northern Ireland patients recalled over single doctor's work.

Trust 'truly sorry for anxiety cause'”

A headline to stop me in my tracks today. First spotted by hubby via the Belfast Telegraph newspaper. But by this evening it had jumped up to a National headline on BBC news. 

Remember the time I was put and left on anti seizure medication that ended up poisoning and almost killing me??....... Erm....... who was my neurologist?....... yep. Got it in one.

Head. Melted. What do I do with this information?? What does it mean?? Have I caused this with my complaint, in which I demanded an explanation for the ‘phenytoin poisoning incident’?  

Learning from past mistakes and anxieties, I took some very deep breaths and I went on into work as planned. I won’t pretend I achieved very much as I spent most of the afternoon on the phone. But I stayed relatively calm and I tried to think things through rationally. 

When I got home, I lifted out my Belfast Trust notes. And my notebook where I’ve listed all key events and appointments since very early on in this journey. Doing that helped me realise that, as shocking as this story is to read, it actually doesn’t change my position in terms of my health. 

Large parts of my brain tumour were removed through surgery in Feb and March last year. This surgery was backed up by radio and a couple of chemo sessions. All of the scans and lab test results etc since then have shown no progression and an improved position in terms of my tumour. So this guy helped to poison me, but I was fortunate enough to have my local Causeway Medical Team of Consultants and Macmillan Doctor and Nurses. They saved my life by catching on to what was going on. Finding out he may have made mistakes should come as no surprise to me really. I’m starting to understand a bit better why my oncologist may not have been too pushed to get neurology involved in the Multi Disciplinary  ‘Team’. If anything it simply strengthens my case against the Trust. 

So I calmed my jets! Reminded myself I’m doing ok. I also rang the Helpline and asked for an appointment with the neurologist I was transferred to in July last year. I’d like everything checked please...... seems fair I think. 

Of course this happens on the day I agree to reduce my steroids. After consultation with an expert nurse that I trust, I’ve taken the plunge and gone ahead with the next steroid drop, despite being a bit scared of what it’ll bring. We agree that I’ve been on them too long, that I want off them and that they’re doing me a disservice now. I’ve got just over 3 weeks before my sister’s wedding so I’ve gone ahead with my bi weekly reduction today. Then we’ve agreed a few week’s leaving things alone until after the wedding. Then we’ll start again and get me off them completely at long last. Which I’m delighted about! 

I’d be lying if I didn’t admit to being a little nervous, but I’m also determined. Plus I’m not tied. It’s my body and my decisions and I can put the dose back up if I need to. I can also alternate between days if I need to.  Let’s do this. Lets take more control back.

I remain horrified by how broken our health service is, but if anything this has forced me to read my notes, insist on review and actually be reassured by my current position. 

Nothing has changed. I’m moving forwards...... I’m living with..... 

xx

Relaxing by taking control

Although I know I need to learn to step back and not feel such need to be in control of everything, I also maintain I have to take some degree of personal responsibility in relation to my medical care.  I have had my medical notes from the Belfast trust for a while now, but was a little scared to look at them. Last week I got my notes from the Northern Trust too. 

On Saturday, in a fit of bravery, I decided to go through them...... In some ways it was the most heartening and reassuring thing I could ever have done. In other ways it was so frustrating that I want to scream at my oncologist, neurologist and multi disciplinary ‘team’!

Scan results shared between different medical folk as recently as February this year show “an excellent response to Neuro-oncological management”. Why, oh why, would my oncologist or ‘dedicated’ oncology nurse never word it like that to my face?? How can they not know from their years of experience that maybe the patient is scared and needs information delivered honestly, but gently? Do they not know when a patient says they’re fine, that they might actually be lying, and may be just crapping themselves and trying to cover up?? Tell them the truth..... gently......Especially when the news is as good as it can be. I don’t expect miracles (though, as ever, haven’t ruled one out..!), but if I’m responding well then EXPLAIN it to me. The brain tumour hasn’t made me stupid. Don’t patronise me, don’t give me a short shift, don’t rush me. Talk to me. Tell me the truth and give me time to absorb it. Maybe even follow it up with a quick phone call a week or two later? Just to give me time to think of and ask questions? 

If I’d had medical experts in Belfast with any sort of decent bedside manner to begin with then I might not have spent the past 16 months crashing in and out of a Kubler-Ross style cycle of change horrors! 

I am reassured by what I read in my notes. Not just in terms of scans, but also lab results over the past 16 months, and other general notes made. 

My nightmares now continue to lie with the prescription drugs concoction I somehow seem to have managed to get locked into. First I was poisoned through a lack of care over anti seizure medications. Now I’m in the horrors of steroids. I have now been on a steroid called dexamethasone since January 2017. This is a drug that is usually given in short blasts. As a result, I can’t just stop taking it. I have to drop it down slowly. The side effects are awful. And every time I change the dosage, I get rewarded with a new range of misery. I have gained over a stone, spend much of my day fighting sugar cravings, wake up every hour at night, have fluid sitting round my knees and ankles, get dizzy, muscle aches, suffer constant indigestion (probably because I never stop eating!), and can swing from high energy to completely exhausted at the drop of a hat.

The only other drug I take is an anti seizure medication. I accept I might need to stay on a certain amount of that one forever, but would like it as low as possible too. 

Going through all my notes; both my official medical records, and also notes I’ve made myself as I’ve gone alone, shows a very clear pattern...... I’m doing well...... until they change my medications mix. Then I hit the skids and there are dramas.

My natural instinct is to rush to get off the steroids as quickly as I can. Suffer the short term pain for long term gain. I’m currently on 4mcg in the morning and 0.5mcg at lunchtime. Even drops of 0.25mcg every 2 weeks are leaving me in a total mess. 

So I remembered my promise to keep learning to be the tortoise, not the hare. After conversations with family and close friends, I was reminded that we’re playing the long game. No need to rush. Don’t be the hero. As ever, my Support Team continue to give me honesty and counselling when I need it most.

I have a meeting with my dedicated palliative care nurse tomorrow (remember.... ‘palliative’ doesn’t necessarily mean ‘end of life’..... it just means long term condition that will probably get you some day, but no-one really knows when). I intend to discuss my feelings with her and seek her advice. Thank goodness for the charities...... if we relied on the Health Service alone, we’d all be junkies! 

I’ll take advice from my nurse, but it’s also fair to say that I’m unlikely to be making any major medication changes prior to my sister’s wedding at the end of May. There’s no rush, and I’m not having the day ruined due to me rushing. I have to live with...... not just survive or stagger from one crisis to the next. 

Sun is shining, mood is good, working hard at learning to chill out. Getting there...... xxx

Feeling groovy

As ever, the Support Team keep me right! I am due to reduce my steroid dose on Monday again. The dose I take is low by many peoples’ standards, but it’s a strong medication, I’m very sensitive to it, and I’ve been on it for 16 months. Even small changes impact me hugely. The two weeks since the last reduction have been really hard. Physically painful, emotionally up and down. Exhausting.

My instinct is always to push through. Naturally tenacious and wanting to just get things done. Have I learnt nothing?? What about all the talk of being kind to myself and not pushing too hard? What’s my rush? Thankfully a couple of good friends took me aside and gently (but strongly) pointed out some obvious facts. That I need to learn more patience, that there’s no point making myself miserable, that I need to slow down. It takes real friends to do that. To respect my decisions, but not be afraid to tell me to slow down. To help me in both practical and emotionally supportive ways. My Support Team is huge and made up of people from all sections of my life. My inner circle is much smaller but made up of people I’m truly grateful for. 

Considering hubby had already said much the same the evening before, and a nurse I trust with my life (not least because he’s literally saved it in the past)...... I finally realised that maybe I need to start heeding advice, and actually doing what I say I’m going to do! 

With that in mind, I am slowing down my steroid reduction programme. I still want off them, and I’ll get there. But I’ll seek advice on it first, and I’m not doing anything next week. There’s no rush. Why make myself miserable? 

I had a much better night’s sleep last night than I’ve had in a long time, but I’ve still got a long way to go before I can say I have a decent sleep pattern back. 

In general today has been great. I was at work this morning, and enjoyed getting stuck into a bit of writing. Typically, it was a bit rambling and needs a lot of work before it becomes a finished product, but it was good to leave and know I’d contributed something, however small. 

Plus the sunny weather had everyone in good spirits and full of chat and fun. Using the computer undoubtedly left me tired so I was glad I’d already planned a half day off. I went for lunch with my dad and then enjoyed a nice 20 mins sit in the sunshine in my back garden. Ok, I’ll admit I did a bit of housework beforehand..... but I promise I stopped when my back got too sore. I didn’t push on. I stopped. I’m tired and my joints are sore, but I’m having a quiet weekend and being good to myself. I’m learning...... tortoising. 

In it to win it. Living with..... Getting there.....

Today’s earworm from Simon and Garfunkel for you..... “Slow down, you move too fast.... gotta make the morning last” xx

Scan, rock n roll detoxing and shining stars

My steroid detox adventure continues in earnest.... it remains nothing short of awful. I was awake after 3am this morning, with joint pains that were like someone sticking knitting needles into me. It was so bad I had to get up and walk round the house. I was crying with the pain of it and came very close to calling a doctor.

But then I realised...... what could a doctor do? Give me more drugs? No, that’s not the answer for me. 

I know some people live their whole life either dulled down or perked up by prescription medications. I don’t judge anyone else’s decisions, but I want to live as close to my ‘normal’ functioning as possible. I definitely don’t want to be dulled, but I don’t want fake highs either. 

I accept I’m likely to have to take anti seizure medication for the rest of my life. Fair enough. I’m on a low dose currently and will worry about that once I get the other sorted. 

The steroids, however, have got to go. They’re too strong and I’ve been on them too long. I’m currently in a very slow titration programme, with small reductions every 2 weeks. If I stick with it at the current rate then it’ll be September before I’m off them completely. I’m willing to give it my very best shot, but it is turning out to be very very tough going. 

I kept going last night without calling anyone because I had a scan today. Like every cancer patient, scan days are nerve wracking days anyway. I might tell you I’m taking it in my stride and my attitude will seem totally upbeat. It’s not necessarily how I’m feeling inside. That’s always been part of the reason for this blog..... it’s where I admit the truth. As well as to my poor husband and sister; both of whom get daily ‘blogs’ and then deliver hugs, wisdom and support as needed. After my scan today I got to enjoy lunch with hubby and my son. It’s times like that when I’m reminded why it’s so important to keep going through the rough bits. Family. 

Thankfully I had a wonderful nurse at my scan today. One who completely empathised with my fear of getting a cannula in, and the dye being cold etc. She took time, was extremely efficient, whilst constantly reassuring me. Another ‘born nurse’...... I’ve got to know a few during this journey so far. Thanks to her, I got through the scan calmly and was able to walk away relatively unscarred from the experience. Now I intend to try and completely forget about it until I’m deemed worthy of contact with to explain results. I’ve been told it might not even be read for 2 weeks.... nothing like dragging it out. 

But guess what?? Another challenge complete. Another scan under my belt. I can’t see any reason to believe anything has changed since the last one, and I just hope someone does the right thing and takes the time to let me know quickly. 

As ever, I will keep up my end of the bargain. I won’t let my Support Team down. I’ll keep my positive attitude when it’s possible, but I’ll also allow myself the odd teary times. I’ll keep working hard and determinedly push through the rough bits. 

I’ll stay on the rollercoaster, with hubby beside me in the front row. Sister right behind. Rest of the car filled with an eclectic mix of lifelong friends, colleagues, nurses...... friends!  Xx

Lucy in the sky with diamonds??...

“Lucy in the sky with diamonds”...... a famous song by The Beatles, believed by some to have been inspired by a picture drawn by John Lennon’s son. Believed by others to be the story of how it feels to be taking LSD.

I’m definitely NOT on LSD. I am, however, on prescription drugs and anyone following the blog will know how much I hate them. I share my experience and thoughts on this aspect of my journey because I think it’s really important to be honest about it. 

I am currently taking an anti seizure medication morning and night, and a steroid medication morning and afternoon. The doses I take of each have both been changed at various stages since my initial diagnosis, and continue to be.

My aim has always been to take as few medications as possible. I also understand that some are necessary. 

In many ways, finding the medications balance has been, and remains, one of the hardest parts of my brain tumour journey. I don’t like feeling like I am not in full control over my body or my emotions. Plus I have overhanging trauma from the sheer mess that was made over the ‘phenytoin toxicity incident’..... 

It’s not easy to trust medications when you’re extremely sensitive to them, know some of the statistics around their abuse, and have already been accidentally poisoned. 

I lived with my brain tumour prior to diagnosis for many years; I just didn’t realise it. I served it with an eviction notice when it started abusing my hospitality in January last year (2017). That eviction notice was delivered from February to October through surgery, radiotherapy and chemotherapy.  If this pesky tumour is absolutely determined to stay in residence then I intend to  live with it for many, many years. 

I understand this may necessitate some use of prescription drugs for my own safety and to ensure I’m giving myself the best chances possible. It remains impossible for me not to struggle with taking them though. I am ridiculously sensitive to them and every change, no matter how slight, is extremely difficult for me.

I am currently reducing steroid medication. Yet again, after 16 months I find myself still taking a drug that’s not recommended be taken  for more than three..... Yes, it’s a low dose, but it’s 16 months and has been changed up and down enough times to make my head (literally) spin. 

The latest reduction has had positive impacts and negative impacts. More energy sometimes, but also much less at other times. Less fluid retention in my joints, but more pain in them instead. Higher highs, lower lows. I’ll spare you other details...!

Thankfully I remain resolute about my ability to take each hit as it comes. And I’m exceptionally well supported, in particular by my poor hubby. I wake him every morning at 03.30am as I begin to toss and turn. If we’re lucky I manage to settle myself enough to stay in bed until after 05.00am. His patience knows no bounds. Both yesterday morning and this morning I was up at 05.30am, hanging washing out on the line and getting myself some breakfast. You know it’s bad when the dog doesn’t even get out of bed when you walk into the kitchen!

As ever, ongoing thanks to all my shining stars who continue to keep my mood up and sit behind me on the rollercoaster. But biggest thanks of all to my husband, who sits beside me right at the front of the coaster, holding my hand.

We’ll get there. We’re getting better at riding that coaster..... Taking it slowly, breathing deeply, holding hands. Xx

Glittering

I’ve no idea how or why it happens, but some days my Shining Stars just seem to come out in force. Like magnetic energies just draw us all together. It’s amazing!

Today is one of those days. The sun is shining and my shining stars are glittering so brightly that my heart is full. 

After a break over Easter, I’ve spent this week again trying to find some balance for my life moving forward. It’s been tough enough, mainly due to changes in medications again. My steroids are being slowly reduced. A good thing. I want to be off them completely. But the reality is that they give a bit of a ‘buzz’ that can be hard to lose...... It’s a fake high and not how I want to live, so I’ll keep doggedly working through the slight dips in order to get myself back to the ‘real me’. It’s not easy to be awake from 3.30am every day, to feel dizzy, have joint pains, fluid retention and sometimes just feel completely overwhelmed. 

It’s ironic to me that I have essentially become one of the prescription drug addicts that I used to write about in my job! Thankfully I have the support, knowledge and determination to power through this part of my journey. With the help of my ever fabulous and wide ranging Support Team, that’s exactly what I’m doing. It won’t be overnight, but I’m getting there. 

It’s not even lunch time and I feel today has already brought complete joy in the form of people..... from family, friends, work colleagues, doctors and nurses..... everyone is smiling, everyone is supportive, everyone is drawing in and sharing good energy today! 

I’m not sure what else I can say tbh. Just that it’s wonderful and that, in this moment, life feels very, very good. Xxx

Living ‘the programme of work’.....

And so the ‘work’ continues..... I’m going slowly, I’m being kind to myself, getting fresh air, I’m getting the medications reduced down, and I’m getting my diet slowly sorted out a bit. 

It’s going well but it’s a slow process. Frustrating but necessary. I’m not naturally patient and it’s difficult for me. The fact is that I have to get used to it! Tough luck T..... this is life with a cancer diagnosis. In reality, in many ways, this is just life!

I remain both angry and alarmed over the irresponsibility of some of the medical experts, particularly the laid back attitude to prescription medications. Is it really up to the patient to research their own treatment and start questioning why they’re still on steroids after 15 months, when they’re not recommended past 3 months??..... Do my so-called ‘experts’ in Belfast not care that I am having to ‘negotiate’ both steroid and anti seizure medication reductions with my GP because my oncologist and ‘dedicated’ oncology nurse don’t seem to have time or particularly care?

I’m being good and obeying the GP and Hospice Nurse. Thankful for them and their willingness to understand I don’t want a pill for every ill! I’m not suggesting we try and beat cancer without using pharmaceuticals.... I know there’s scientific evidence for various treatments, and I’ve done and will continue to do, what needs done. BUT I’m sorry to say our Health Service is broken. It has no money, no leadership that I can see, and needs a complete overhaul. For every wonderful and dedicated doctor/nurse/staff member, unfortunately there are also jaded, tired and overworked ones; the latter causing serious harm. Harm to the patients they committed to protect, and also to themselves as people. 

I listen to our politicians, both locally and nationally, and I hang my head. I’ve even had a few moments where I’ve considered a Jerry Maguire type moment of starting a new political party! One where nobody cares about orange or green, and where we focus on the REAL issues impacting on us all as human beings. But then I remember it’s not my job to save the world..... that I’m tired...... and probably a little high......! 

So I’m going ‘back to the Riverbank’. Remembering not to rush. Learning to live the new life I generally love and much prefer to the old one! Still determined, still working hard..... but not saving the world. Just myself. Xxx

Later that same day....... 

I wrote the above entry this morning. Early. I was exhausted and, as ever, trying desperately to put into words how I felt. I wasn’t in a terrible place, but I’ve definitely felt better.....

Now, later in the day, I feel a bit better than I did earlier. I don’t want to totally spam everyone with constant blogs, so I decided to sneak in this wee update on the bottom of the existing one. A longer blog, but one entry. 

Why am I explaining this?? You don’t have to read! If I’m boring you, close the blog!! Don’t read it. I won’t be offended. I don’t even really know who reads it anyway. I know some, because they’ve told me or commented, but most just quietly dip in and out I think. 

Anyway, so where am I now? Physically, much the same. On and off indigestion, feeling bloated and uncomfortable at times, constant bathroom use. Keen to get the medications managed properly, in particular the steroids. 

Mentally, I’m feeling pretty good. I’m exhausted. I’ve been awake since just after 3am as usual, so it’s impossible not to feel like I’m running on fumes a bit. The insomnia (which I firmly believe is due to medications) has been ongoing and it impacts on everything. I feel an even bigger pity for my poor husband, who has to share a bed with someone who gets up every few hours to use the bathroom, and tosses and turns all night. 

But I’ve said it before.... the cure to insomnia is definitely not to stress out about the insomnia! So I’m trying to change my attitude to it a bit...... if I wake at 1am then I’ve probably slept solidly for around 3 or 4 hours. That’s a great start! If I need the loo then get up and go quick.... don’t wake up properly..... just go and then snuggle back up. Don’t worry about the time. Don’t look. Ignore the birds.... sometimes they drink!!

So despite still being exhausted today, I am feeling ok. I know I can function. I’m not stressing and I’m being kind to myself. I’m taking my time. Yesterday I managed to gently do a supermarket shop..... yes, it was with hubby’s help and I had to sit at one point. But I didn’t pass out, I didn’t have a seizure, I didn’t fall over...... I did the damned shop! Today I had a short walk. Again relying heavily on hubby. But that’s ok..... the fresh air helps manage fatigue anyway. I took my time, we didn’t go too far..... all good! 

Then I cooked! Well..... mixed...... I made a lovely chicken, scallion, tomato, mustard and brown pasta salad thing for our lunch. Very healthy,  very tasty and another step forwards with the diet part of my ‘programme of work’. 

So I’m much more positive this afternoon. Tired but not being hard on myself. Looking forward to going to work tomorrow...... gently...... 

Yes, i want rid of this damned brain tumour, yes, i feel frustrated at the slowness of sorting out my medications (but understand it’s the only way to do it), yes the Health Service can suck a bit....... but I am here! I’m alive and living a bright, fulfilling life!! Let’s keep that up! 

That’s it. That’s my brain downloaded for today. I’ve nothing more to say. I’m good. Life is good. Still winning Xx

Inspired and overwhelmed

PSNI TedTalk day today. I went to bed early last night in the hope of a good nights sleep..... optimistic....... I ‘tech curfewed’ early, put on my Wind in the Willows ‘sleep story’ audio,  and fell into a deep sleep early. I was awoken to the sound of a bird...... hurrah!! 

I gently punched the air and quietly said “I’ve slept through! Yay!” I’ll just check what time it is before I wake hubby for work..... birds singing means it’s after 5am, and he has to be up at 6.15 for work. Alarms are set, but it’s nicer to be woken with a cup of tea.... 

Go home crow, you’re drunk!! Time? 00:54. Seriously. I could’ve cried. I’ve been asleep for no more than four and a half hours. And now I need the loo. Up we get.... Now I’m totally stressed out.... not a great cure for insomnia! Damned steroids. Damned drunk crow :( 

I followed this up with restless dozes, interspersed with the usual toilet trips and anxiety attacks. I’ve a TedTalk to deliver in Belfast...... I need to sleep! 

And so I got out of bed this morning before 6am and left for Belfast just after 7. My sister came over from Manchester to support me so at least I was in good, relaxed and calm hands.

We arrived at the event location in good time and it was great to get some time with other speakers.  Seven of us, all with different stories, all with something to say, all nervous and wondering a little about why we were doing it! 

One by one, we each delivered our presentations. Everyone was fantastic. I felt such pride in my fellow colleagues. And yes, I felt some pride in myself..... I might’ve been sitting down, I might’ve been using fully scripted notes (to stop me going off on any mad tangents), but I was doing it! The support from the room was palpable...... I could practically feel arms wrapped around me, cheering me on. I was even kindly given a standing ovation.

Whilst everyone was brilliant, the final speaker of the day was the one that has literally changed my life forever. Clodagh Dunlop, the police officer who survived locked in syndrome is, quite simply, the most inspirational, strong, determined person I have ever had the pleasure of meeting. I felt like a total fraud even sharing a stage with her.

Clodagh, you are my hero. If ever I feel any emotional dip about my own challenge, I will think of you. Your standing ovation seemed to go on for ages..... and it still wasn’t long enough! Thank you. Words aren’t enough. I am honoured to know you xx

The rollercoaster and the ‘programme of work’

Anyone who’s followed this blog will know how hard I’ve found the constant changes and lack of clear plans or control. 

In some ways I need to get used to relinquishing control a bit..... the brain tumour is going to do what it wants to a certain extent. HOWEVER, that fact does not mean I cannot help myself. I’ve been learning this the hard way a bit, but learning all the same..... my rollercoaster has tended to go from me being hugely optimistic, running at 100 miles an hour, and then promptly face planting.... then having to start ticking back up the frame all over again.

I remain hugely frustrated at the lack of guidance and the totally disjointed approach of my supposed ‘experts’ in Belfast. Thankfully the local medical team continue to come through in spades. My dedicated Hospice Nurse is great, my GP is stepping up and even Macmillan continue to take an interest in my case. This ‘above and beyond’ attitude is helping me now start to get myself very much back on track again after the setback of breakthrough seizures a few weeks ago.

Along with the never ending support from family, friends and work colleagues, I have now very much set myself up a ‘programme of work’. Although that’s kind of a contradiction in terms as it largely involves slowing down and doing less! 

Moving forward now, these are my key goals;

• Reduce how much I try to do in a day. Learn my limitations. Take breaks. Don’t over commit. Be the tortoise.
• Go easy on myself. Relax. Daily meditation again. Stop apologising to everyone who helps me. Lose the guilt.
• I’ve got my anti seizure medication reduced a bit again. It’s definitely improving my sharpness, but I don’t sleep at night for more than 2 hours at a time, so I’m still often exhausted. This exhaustion impacts on everything - concentration, dizziness, mobility, seizure threshold, risk of picking up infections, mood and wellbeing, ability to function in general. And it becomes a vicious cycle as I end up putting more pressure on myself to sleep...... which does not help insomnia! I’m keeping an eye on the impact of all changes and making sure I keep being demanding about making more changes if I feel my body is trying to tell me something. 
• Next up is the steroids...... I’ve been on them far too long and am convinced they’re doing me more of a disservice at this stage. Tying into my previous point..... it’s very difficult to get a good night’s sleep when you have to use the bathroom every 2 hours. We’re starting to very slowly drop the steroid dose again from next week. 
• Getting my diet sorted out. I know I can partially blame the steroids, but it’s my hand that’s constantly grabbing the biscuits! There’s lots of conflicting information out there about cancer and diets etc. The reality is that the big trials haven’t been done, so the hard, scientific evidence just isn’t there yet. Far better to pay big pharma companies for more drugs than to see if cutting sugar or particular fruits/veg might help cancer patients.......?! Regardless, a healthy diet can’t hurt, so I’m aiming towards one third starchy carbs (whole grain bread, brown rice/pasta, potatoes), 5 portions fruit and veg, 2-3 portions protein rich (fish, chicken, eggs, nuts), limitations on high fat and high sugar, lots of water, and 6 smaller ‘meals’ per day.
• I won’t do it overnight, but I’ll get there. I’ve got all the time in the world and need to take personal responsibility for the bits I can. 

All this personal decision making and help from my ongoing ‘Support Team’ has left me feeling very positive today. I know it’s going to take determination, but I’m good with that! I know there’ll be some more dips, but hopefully I’m moving from Alton Towers to Barry’s in Portrush, at the very least..... 

Onwards, upwards. Slowly. Gently. Stay with me Team..... I still appreciate, love and need you. Keep within catching distance and I’ll work on not needing the safety net Xxx