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