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