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

Good health, good talk, good hair, good energies......

What more could a girl ask for?? 

Today was a big day for a number of reasons.....  

Firstly, in health terms - 

Good meds.....I had urgent bloods taken yesterday due to my increased fogginess. Plus it was agreed my anti seizure medication would be lowered back down again; just in the morning. This is what I wanted. Everyone is confident that the breakthrough seizures were due to a sinus infection rather than anything more sinister. Increasing my seizure medication worked to control them, but left me tired, foggy and miserable. Not a life I want. I’m content that the meds mix should be right now...... I am taking personal responsibility around this moving forwards. Increased mood is great, but I’m not jumping in too quick again. I will take my time and go slow. Listen to my body and look after it. There will be lots of ‘down time’, a healthier diet, with less sugar and processed foods, and more fresh fruit and veg. If you have an infection of any type, particularly ENT related, then please stay away from me. 

Also good bloods...... yesterday had ended badly. After a fabulous reiki/ relaxation session I had returned to be told I had to have urgent bloods taken due to my fogginess, increased seizure activity and feeling of confusion. A good thing that things were taken seriously and I’m very grateful to the efficiency of my dedicated Hospice Nurse and my GP surgery. As ever, my veins didn’t play well and i feel sorry for the poor nurse who had to admit defeat after 5 attempts (my fault, not hers - I insisted she keep going). Thankfully fresh eyes and a smaller needle allowed them to be taken. Today it was confirmed that they look fine. Sinus/ear infection seems to be lifted (which I knew, but nice to have confirmed), liver and kidney function all looking good, and white blood count “well up”. Happy days. Good for confidence to know things look ok. 

Secondly, Tedtalking

Next week I am delivering a short TedTalk for work. I’m one of about half a dozen who will deliver short presentations on ‘Challenge’. Today we had a rehearsal. I was a little nervous, and undoubtedly rambled a little.... I definitely added in some very poor jokes due to nerves! Thankfully feedback was really good and I left feeling very much ‘lifted’ in terms of self confidence. A big, exciting step!

Thirdly, good hair -

Not exactly life changing, but all good for wellbeing! My horribly dry and half bald post surgery/radiotherapy scalp is now soft and covered in ever thickening healthy, dark hair. A few greys, but really very few. I don’t miss my long, flame red locks one bit and am enjoying the liberation of my new look. Again, sometimes little things can make a huge difference in terms of mood and overall wellbeing. 

Finally, good energies 

As ever, I maintain the ‘goods’ from today have been driven by the good people around me. Hubby has been off work with me this week. He’s dried my tears many times as I struggled with the difficulties caused by the sinus infection and meds mix. Yesterday I had my first session with an old school friend who now specialises in reiki/ relaxation/ reflexology etc She was fabulous. The positive feedback and energy from the TedTalk rehearsal today lifted me hugely. It felt like I was doing something positive..... sharing how a serious health challenge can genuinely have a positive impact on lives. I’m looking forward to hearing everyone deliver theirs next week, and to feeling the achievement of delivering my own. 

Additionally, my sister’s wedding plans are now almost completely finalised, and it’s going to be a fantastic, fun day for everyone! Those attending are an eclectic mix, and I am both delighted and excited by their willingness to jump aboard and enjoy a fun time with my fabulously easygoing and beautiful sister, and her wonderful fiancé. Plus she’s coming to visit next week and I am almost bursting with excitement at the thought of getting time with her!

Macmillan fundraising is going great too. We have four events to raise cash for the local Causeway Team, and already have 25% of the aimed total raised..... I’m now hoping we could well surpass my initial hoped for total. This would mean the world to me. This team of amazing people literally saved my life. They are selfless and wonderful. At a time when we hear nothing but negative news stories about of Health Service, it feels important to be able to give back to a local team who do such important work.

Back on the up. I’m exhausted this evening, but in a really positive way. My plans for this weekend involve some fresh air, time with hubby and plenty of relaxation. Building myself up again, getting ready again for living with, and beating, this thing that tried to stop us.

Moving forwards...... xxx

Back to front...... and patience!

Patience. Not my strong point. Never was! 

Following the breakthrough seizures last week, medications changed. The change has done the job it was meant to do, and I don’t feel at any risk of a seizure at all. It’s great to have my confidence back in that sense. I feel less of a burden on others.

Unfortunately it seems there’s a trade off...... I’m exhausted, dizzy and the slightest task can take what seems like forever. It’d be so nice if there was one person who had all the answers....... if there even were clear cut answers. Which I know there aren’t. Too many variables, too many chefs. 

Thankfully hubby and I have taken holidays from work for a couple of weeks, so we are using them to get a rest and try to find a bit of balance again. I’m very much remaining hopeful that the reduction in sharpness has largely been brought on by doing too much at once, while trying to fight a sinus infection. I’ve shifted that infection now and am hoping that I’ll start to see an improvement in how I feel when I’ve finished the antibiotic course this evening. Patience.

In the meantime I am continuing to push myself a tiny bit (daily short walks in fresh air, light housework), daily mental tasks (wedding planning/ writing this blog/ taking notes and making lists of ‘stuff’ that needs done), but all whilst getting plenty of rest and being kind to myself. 

Bizarrely, I was at physio this morning, and discovered I’ve been using my walking stick completely wrong! I was shown wrong at the start and have been using it in the wrong hand..... which might explain why I was getting a bit of muscle pain down one side. Apparently it’s more commonly done than you might think! The stick is really a security blanket anyway. It’s to give me an extra support if I get dizzy. Now that it’s in the right hand, that might work a bit better. Doh!

Not my best week, but as ever delighting in the wonderful shining stars around me. Hubby remains my total rock, without whom I think I’d have crumpled completely. 

I’ve also had some particularly fabulous moments that have made me smile from ear to ear. All have involved people....... my shining stars just reminding me that they care and that they’ve got my back. As ever, some from wonderfully unexpected sources. Kindred spirits, attracted together like magnets. Constant support and a complete ability to jump into my crazy journey! 

Still learning to live with..... Still resolute. Still smiling. Still winning.

Xxx

Dips, support and serendipity

Having the breakthrough seizures last week has had a bigger impact on me than I like to admit. But there’s little point in telling my story if I’m not going to be totally honest. Plus getting it out through writing, continues to help me rationalise and try to make sense of things. 

The seizures themselves were frightening, but I know I partially brought it on myself by doing too much all at once. Lesson learnt! I don’t have any problem taking personal responsibility for getting carried away and pushing myself too hard. I am also sensible enough to take responsibility for fixing it. Thankfully my husband is nothing short of wonderful, and we are using annual leave over Easter to get things relaxed down again. 

The focus is on rest and relaxation, sorting a decent diet and exercise, fixing my horrendous sleep pattern, and just generally building me back up physically and emotionally. With his help, I know we can do this. And we are.... 

Unfortunately, as has been the case from day one of this journey, there are so many variables. My reduced seizure threshold was likely brought about partially from doing too much and partially from a sinus infection. An increase in anti seizure medication and antibiotics seems to have resolved this. A good thing? Of course. However...... we now have the situation where my anti seizure medication is increased, at the same time as a change in steroids, on top of an infection and antibiotics....... 

The result? I won’t take a seizure on you, but I may stare at you blankly as I desperately try to focus on what’s going on, or I may start to cry because I’m feeling a bit disorientated and odd. I often feel dizzy and I’m dulled down. Which I hate. But I know I need to exercise some patience with the new meds mix..... and be kind to myself, not expecting too much or being too hard on myself.

As ever, it’s those around me that pull me through. My husband, a hero amongst men, who’s patience knows no bounds. My sister. My friends, from all walks of my life; some from childhood, others more recently met. All my shining stars. All sending me constant good wishes through hugs, messages of support and just their wonderful energy.

As ever, serendipitous moments give me joy and remind me I can do this. Yesterday I bumped into two old friends within an hour of each other. Both happy spirits, both lifting me and making me smile. Then I got chatting to a stranger who told me of his cousin, who’s been living with a brain tumour for 18 years now. I didn’t ask detail about location or grade etc because I know they’re all different, but it’s further proof there are good news stories out there. And there really are...... I hear them all the time. I intend to continue to be one of them. 

Even as I sat down to write this update, I received a well timed message from a happy soul I’d never have met if not for my unfortunate diagnosis. In it, she built me up and showed complete faith in my ability to keep fighting this thing. I take all this support and messages as signs..... I know we can do this. 

I hope this hasn’t seemed a negative posting.... my hits now sit at over 52,000 and the aim is to get things out, but in a helpful and positive way. It’s an airing of my thoughts in order to remind myself of all the many, very genuine positives. I am here, i have the seizure risk under control again, I am enjoying time to relax, regroup, spend quality time with hubby, and try to get the medications mix right. These are the things that will keep me here annoying your heads for many years to come! 

Living with..... let’s do this!! Xxx

Epilepsy information

We appear to have the seizure risk under control again, but I’ve attached some First Aid info for any friends/family interested. 

A good thing to get these stopped again, clearly....... but unfortunately I can’t help feeling I’ve sacrificed some ‘sharpness’ in the process. That bit isn’t so good, and sometimes it’s difficult to decide which is the lesser of two evils. I want to live a long life that doesn't involve taking seizures...... but I don’t want to constantly feel ‘dulled down’ and a bit stoned. We’re spending the next few weeks resting up and also trying to patiently work with medication mixes, in order to try and get the balance. All a bit scary and frustrating, but we’ll get there I know..... 

The radiator at the end of the line.....

You know the radiator in your house that’s at the end of the line?.......the one that’s always a wee tiny bit cooler, no matter how many times you bleed it??.......... I feel like that radiator. It’s very frustrating........

If I lived in Belfast my treatment would be quicker and more efficient. It shouldn’t be a postcode lottery....... unfortunately it is, and the north coast is right at the end of the line....... by the time word gets up here, there are so many air pockets, it’s amazing the heating is even on........

As things currently stand, my seizure threshold has lowered due to changes in medications, a sinus infection and from pushing myself a bit too hard.........  

I completely accept I have personal responsibility around some of this, but I also feel it is deeply unfair that I cannot get the same speed and therefore quality of treatment as someone who lives closer to Belfast would get.........

My epilepsy medications need adjusted, as do my steroids. As ever, my ‘multi disciplinary team’ in Belfast are nowhere to be found. Not returning phone calls, passing decisions from one department to the next........

Getting meds changed has involved conversations between at least half a dozen people........  In order to get my anti seizure meds upped today, I am aware of conversations involving (at least!) - at least two different nurses from two different charities , two different ‘dedicated’ oncology specialist nurses, an epilepsy nurse, a neurologist and a GP...... minimum seven people that I’m aware of........ 

It’s like Chinese whispers....... and instills very little confidence in the system. It all also takes time. As a result, I’ve been left waiting days for someone to make a decision (which thankfully a local GP has finally done). During this time my medications remain wrong ..... increasing my seizure risk, leaving me tired, confused, scared and upset.........

I am also having absence seizures where I literally ‘lose time’. It’s disorientating, unsettling, upsetting....... Not to mention the anxiety and position it puts on those around me...........

It’s not right and I’m willing to admit it’s had a negative impact on me that I’ve had to fight very hard through. And still am. Thankfully, as ever, I have huge support from family and friends........

I am combining this with determination and positivity. As of now, I’m resting up. I’m going easy on myself. Thanks to a GP, willing to make a decision, I can now start to get my medications fixed........but it’s taken extra days that it shouldn’t have taken. Putting me at additional risk......

I am on a break over Easter and, thanks to yet more serendipitous timing, hubby is off at the right time too. The next few weeks are about getting medications fixed, resting, and getting myself back on track. Removing the air bubbles and getting the radiator working properly. It shouldn’t take good timing and people going above and beyond...... but I’ll take whatever I have to take to stay well......

My diagnosis and prognosis remain unchanged. I can live with this. I WILL live with this. For many years. It is not my time and I will not let you down. Xxx

Carpe Diem.......

‘Seize the day’....... 

Been doing a lot of that of late. Living life. Enjoying myself. Refusing to be beaten. 

I have been gently back at work. Limited hours and with lots of risk assessing and breaks etc. Management and colleagues have been nothing short of wonderful. 

So many have willingly learnt a bit more about my condition, and happily ‘babysit ’ me, letting me sit in their office so I’m always safe with other people around me. Unfortunately, despite anti seizure medication, I now live with epilepsy, and there is always a small risk of a seizure. For this reason I cannot be in an office alone at work. Fair enough. We have Risk Assessments and an amazing list of volunteer ‘health buddies’....... I have been completely humbled and grateful to colleagues willing to have me sit in their office without totally freaking out at the thought that I may randomly start having a seizure! 

In reality this is highly unlikely to happen. In 15 months I’ve had half a dozen such incidents. But it can happen and I’ve been completely in awe of the number of people who take that in their stride. ‘What do we do if it happens? Dead on. Yep, sit in with us.’

By working together with me, the organisation gets to keep a staff member who wants to work and who can still add value. And I get to maintain a life where I still have some independence but where I’m not being patronised or treated like I have nothing to contribute. 

I still love my job and I want to work. I have limitations, but we are working through them and it’s been great! I’ve been working reduced hours, safely with others around me. Very much moving forwards and feeling very content.

I’ve also been doing more outside of work. I’ve attended a few gigs...... nothing too noisy or busy, but it’s been nice to have that bit of our lives back a bit too. I’ve been spending time with friends.

Realistically I can live with this tumour for decades........ it has to be a life worth living! 

So I’ve been hugely positive and very much living and loving life! 

I’m willing to accept I got a bit carried away........ particularly over the past week with birthday celebrations and preparing for some lovely time off and a  rest over Easter.......

Plus I picked up a sinus infection. I suspect it’s been working for a while, but I thought it’d sort itself out.

Unfortunately last night the sinus infection, doing a bit too much and birthday excitement all merged together......I was shattered so I duly warned hubby I was feeling a bit ‘off’ and went to bed early. Sensible. We both expected I’d fall asleep early and wake up today feeling a bit better again.

I went to bed early but then came over very weird...... I knew what was coming..... unfortunately hubby was in the other room when the first seizure struck........  It was a small one....... I was conscious but not in control of my muscles....... twitching, particularly in my face....... The same as has happened to me before, but this was only the second time outside a hospital environment.  

It’s difficult to explain the fear that comes with an incident like this. Despite me knowing  this is going to be part of my life with a brain tumour, and despite having experienced it before, there is little doubt that a seizure is a horrible thing to go through. Particularly alone........

Although I wasn’t alone for long. Poor hubby got the trauma of me banging on the glass panelled door into our kitchen....... having crawled up the hall like something out of ‘The Ring’........  Then he got to dry my tears as i cried like a baby over the whole sorry affair. 

Doctor on Call cautioned against doing too much, but was content it was a minor seizure and I was all ok.

Back to bed. In terms of energy expended, having a seizure is equivalent to running a marathon apparently. I’ve never run a marathon, but I can definitely confirm the pure exhaustion resulting from a seizure.

Hubby came in and sat with me so I’d feel more secure. Then the poor guy got  to watch me do it all again an hour later....... This time he rang an ambulance. We know this isn’t really necessary with these small seizures. They last 3-4 mins at most and my biggest danger is probably from potential falls rather than the seizure itself. 

But I can completely understand why a witness would instinctively ring ’999’.

So what was the outcome? Where do we stand now? Reality is that absolutely nothing has changed....... I have been fighting a sinus infection, I've done a bit too much and I didn’t speak up in time......  I had two small seizures as a result. I am now on antibiotics, have learnt a valuable lesson and am reminded that my husband is a complete saint.

I have to be able to have a life. The support of my friends, colleagues and particularly family, allows me to do this.

I remain absolutely certain that the right attitude will be what carries us through this whole thing and keep me alive and well for many years to come.

But I have to work really hard at slowing myself down and not pushing too hard. 

Equally, I cannot sit around all day, waiting for disaster. My mental state of mind is as important as my physical...... the two are intrinsically linked.

Yesterday was my birthday. 43 years young. I have been building up to it for a week! Looking forward to some fun plans and also about to take some quality extended time off with hubby over Easter.  I got carried away and I didn’t look after myself well enough.

Moving forwards? We’ve put some extra safety measures in place at home. I have had a good cry and let myself be thoroughly pissed off at the setback. We have brushed ourselves off and picked ourselves up. We have reminded ourselves that I may have the odd seizure, particularly if I get run down and/or over tired.

In the short term, I am working on getting this infection lifted and am resting up. 

Longer term I’m continuing to work hard on my mental and physical fitness levels. But I’m not being a hero......... if I’m tired, I will rest up. Equally I am not lying down every day and waiting for disasters. I will remain determined and I will gently push...... but in a safe and sensible way.

Now we go back to living a happy, positive life. Everything is really the same as it was before. I am living with this thing. Like so many others. I am doing it with the love and support of an incredible group of people. 

We are winning. Living with........ xxx

Birthdays, friends, fundraising, living life.......

What a week!! Where to start??.......

I’m back at work in a phased way. Excited to be contributing in an unpressured way. Adding value and letting me keep some sense of myself. Hugely supported and hugely grateful to wonderful bosses. Common sense approach ensuring the best for everyone concerned. Even getting ready to deliver a TEDTalk on Challenge. 

I celebrate my 43rd birthday tomorrow. Good for me!! Alive, as healthy as can be hoped for currently, happy, positive, and very much moving life forwards in a positive way.

I remain hugely positive and immensely happy with my life. Of course I wish I didn’t have the brain tumour...... but I remain determined to not let it win. And as ever, my Support Team are keeping me held up as needed.

After a wonderful meal out with beautiful friends last night, I have enjoyed my best nights sleep in months. I’ve awoken with a stinking cold, painfully swollen lower legs/feet (presumably from lying so still while sleeping so soundly for once!) I have received beautiful birthday gifts, but more importantly, am continuing to enjoy a happy and fulfilled life with my amazing family and friends.

My next scan date came in........ 26 April........ it’s good timing. Long enough away to allow me get my head ready mentally, but not too close to my sister’s wedding date to have it hanging over us. Still hoping for a miracle, but I’ll settle for a ‘no change’ quite happily.

I am here. Very much alive. Very much living and loving life. Be happy with me. Enjoy life...... it’s very precious.

And finally....... don’t forget to put your hand in your pocket for Macmillan...... thanks xxx

https://www.justgiving.com/fundraising/triciafest

Macmillan Fundraising update

We had set up a Just Giving fundraising page for the planned charity rock gig in May. It’s grown somewhat........ There are now four linked events! I’ve deliberately kept it on one page as this allows all the money to go back to the local Macmillan Team in Causeway that saved my life.

https://www.justgiving.com/fundraising/triciafest

We now have four associated events!

TriciaFest, Vicky & Andy’s Wedding Gift Donations, Work Coffee morning & Warren York’s Fast

All in aid of Macmillan.

The story? Triciabigbrain.blogspot.co.uk

Event #1 -  Charity Rock Night

The Diamond Rock Club

Saturday 26th May

Public event, open to all

featuring :-

Fragment (Classic Rock covers band)

Trucker Diablo

Nasa Assassin

Gasoline Outlaws

Lo Major

Gig and Belfast beer bus tickets available from www.wegottickets.com

For those who can’t attend the gig or it’s not your thing, but who still want to donate, hit us up here! 

Event #2 -The extra twist! -

My sister and her fiancé have amazingly generously decided to get married earlier in the day and have asked for no wedding presents, rather donations to Macmillan. For ease, we’re going to capture all the donations via one page, be they wedding gifts or Triciafest donations. One family, one story, one massive push for Macmillan!

Private event - invite only 

Event #3 - PLUS we now have a work coffee morning tagging onto the page!

Private event - invite only

Event #4 - And my mate Warren York is doing a sponsored fast.

Not really an ‘event’ as such. Just send him your support!

Give to any of the above four ‘events’  here......... 

https://www.justgiving.com/fundraising/triciafest

Thank you. You guys rock!! Xxx

New life.......

Our life of ‘living with’ my brain tumour is very much taking shape now. My biggest challenge is now ensuring I don’t go off like the hare! Tortoise, tortoise, tortoise...... Thankfully I have family and friends keeping me in check.

I have been very busy the past few weeks. Probably too much so. I’ve been tired as a result and a bit of sporadic anxiety was starting to creep back in. 

So the last week has been spent taking some control of that again. I’m meditating daily again and am back out trying to get daily walks. I’m trying to watch my diet again and am re-enforcing my evening ‘tech curfew’.

I am back at work. In a slightly limited capacity, with reduced hours, but still adding value to the organisation. The support has been fantastic. I am not allowed to work in an office alone due to the seizure risk. This is sensible for everyone. Thankfully a number of people have been willing to become ‘buddies’ to me........ I have spoken to them about my condition, explained any seizure risk, what it would look like, what they should do etc. We are arranging additional first aid training for them, specifically for dealing with epileptic seizures. These wonderful colleagues have agreed to take part in this, look out for me, and we have simple systems in place whereby I always check in etc. It keeps me safe but also allows me independence to work. The willingness to help me has been humbling and heart warming. I am hugely grateful to the group of people who’ve readily stepped up. 

I also now have a ‘safe space’ in work. A quiet place. This is invaluable to me and I am currently making it a place of relaxation and peace. My haven. There is little doubt that a full day at work exhausts me. My ‘safe space’ not only gives me somewhere to go if I feel unwell, but also gives me somewhere I can go to just chill out and take a break for half an hour. Even knowing it’s there has resulted in any anxiety levels reducing. I check in with someone so everyone knows I’m safe, but I can take some time out alone. I’m currently making this space my haven...... with books and a blanket, a comfy cushion...... Little things, but really big things to me.

I continue to use any days off and free time to spend quality time with family and friends. I try to do a weekly adventure with my dad and am thoroughly enjoying drives and walks and meals out with my husband and friends. We are happy and we are enjoying life. 

This weekend i am loving having my sister and brother in law over visiting. I had read about an idea whereby people paint and decorate stones at the beach. You hide them and take photos that you post to your Facebook page. Friends can then go and look for them and post photos back to you. It’s really for kids....... I think....... or maybe it’s just for people who want to smile. My sister and I hid some in Portballintrae today. It was absolutely freezing, so I can only apologise for the lack of creativity....... we couldn’t feel our hands and,for want of a better expression, “the snotters were tripping us!!” But please feel free to go looking for them if you’re in the area! Next time we do it we have decided to pick a warm, sunny day!! 

Life remains good. We’re making our adjustments and we are not letting this thing drag us down. 

As ever, completely grateful to and in love with my Support Team. 15 months on, and still an ever growing team of people around me. Believing in me. Supporting me. Patiently holding me up. 

Xxx

Being inspired and enjoying life.....

Sunday’s seizure was a bit of a mental setback..... not a huge one, but I’d be lying if I said it didn’t frustrate me and leave me with a bit of anxiety. It’s left me with a wee niggle..... the odd sped up heart rate. I know it’s not really justified, but it’s taking hard work to shake it off completely. 

In reality, i know it was a good reminder, and is allowing us to ensure I’m kept as safe as I possibly can be. It’s all part of moving life forwards and living with my condition. That can only be good, but sometimes I get a bit chicken about it all. Which is silly, really. Far better to be aware and have plans in place. 

The facts are very simple. I am living with a brain tumour. I’m very far from being the only one....... in fact in the past week, I have spoken to family members of three others in a similar position. One was given 3 years to live...... 7 years ago. One has been successfully working through things for the past 3 years. Another lives with weekly seizures but keeps otherwise very well. Today I met a young boy who’s living with bone cancer. He underwent 10 chemotherapy cycles and is braver and more inspirational than I could ever even pretend to come close to being. A true champ. 

There are so many people....... so many heroes. We don’t realise. One in two people are now believed to be diagnosed with cancer in Northern Ireland. Half of us.  

Being a stat still sucks, but I know I’m fortunate and I am hugely grateful for many things. We are living with....... all doing well....... all alive and living a life. My reality is a good one...... I am in a monitoring schedule. My scan results have been good to date. The next one should be around May time. If results remain unchanged then I’ll live the same life as many other cancer patients...... scan, hopefully good results, longer wait for next scan........ 

In 15 months I’ve had less than 5 seizures. The initial ‘big one’, a grand mal, has never been repeated and is very unlikely to be due to surgery removing so much of the tumour. I’ve had 4 or 5 smaller seizures. These have been directly linked to medication changes, with the exception of Sunday when a temperature spike  due to a sinus infection was the cause. I can understand that having a potentially epileptic friend/family member/work colleague is a big responsibility to put onto people. To provide some genuine reassurance to others, and to try and ensure I’m kept safe and also not putting undue pressure on others, I am gathering together information for you guys. It’ll mean everyone knows what to do should anything happen. I say this with the massive caveats that a seizure is very unlikely to happen, if it did it’d only last a couple of minutes, I’ll know it’s coming and will pre-warn you, and it won’t do me any harm so long as I’m somewhere safe (which I’ll make sure I am). I promise I am taking personal responsibility but I’m also very sympathetic and apologetic for any worry it causes to anyone around me. 

I know that the risk of me having a seizure impacts on others..... friends, family, work colleagues...... putting things in context, I don’t regularly have them, I’m on medication that works, and there is absolutely no reason why this won’t continue to be the case moving forwards. However, I am gathering together information for anyone who might spend time alone with me. For everyone’s reassurance. I’ve already got lots of things in place and plenty more ideas....... there are great things you can do with your iPhone in terms of medical IDs and alarms etc. Epilepsy Action have some amazing resources, and I have other stuff planned too. I’m hoping that I may be able to pave the way a bit for others and I’m grateful to others for ‘learning’ with me. This is particularly true of work colleagues. The fact is that I’m potentially a bit of a risk to them..... and they’ve been wonderful at working with me to mitigate any risk. They could’ve just told me they couldn’t accommodate me and I’d have been forced to medical off. Which isn’t what I want. Instead, we are all working together to ensure I’m safe, they’re covered, and no-one is put into an unfair position. We’re taking our time and doing it right. 

As a result, I took yesterday and today off work completely. I’m back in on Monday to sort a few details out. It’s a bit frustrating, but it’s necessary and will be worth it. I made the most of the few days......... with plenty of family time.  Yesterday I spent a wonderful few hours with a childhood friend and her parents. We reminisced about times spent as 7 year olds....... right through to our teenage years. It was heart warming and fun, and I thoroughly enjoyed it. Today was spent with my dear, old dad. We enjoyed a beautiful spring day, with a promenade walk, coastal drive, lunch out and a trip into town. And to finish my day off perfectly, my in laws arrived for a cuppa not long after I got home this afternoon. I now find myself exhausted, but content and looking forward to a deep sleep tonight! 

Life remains good. Challenges remain achievable with the ongoing support of family and friends. Each passing day, and each new challenge conquered reminds me of how fortunate I am. Hopefully my experience is/will make things easier for others. All learning together.  Living with....... xx

Living with........

Thank you to everyone who was concerned about my wee seizure on Sunday....... I’ve been inundated with messages, and it’s appreciated. Though not necessary...... I am fine. A bit of a flu /bug/ cold type thing, but I’ve learnt Sunday’s lesson and am being careful. I’m paying attention to how I feel, speaking up if I feel odd, keeping an eye on my temperature and making sure I take paracetamol every 4 hours. 

Yesterday I went ahead up to work in Belfast as planned. I know, I know, I know......... but it was an important day for me in terms of moving forwards. I’ve had 14 months of really fighting hard, but the phenytoin toxicity was making daily life a bit like wading through treacle. I covered it as best I could and friends and family pulled me through, but it took getting that drug out of my system for me to be able to start feeling any way normal again. Now I finally feel back to myself! The infection I currently have is a bit crap, but it’s really no different to having a cold or flu at any other time........ we’ve just had to get used to the added threat from seizures etc. That’s unfortunately just going to be one of those things that we now live with. 

Yesterday was a bit of a symbolic work day for me. I cleared out my desk in Belfast. I loved working up there, but it’s no longer an option for me. I can’t drive (and Sunday puts my ‘one year’ timer back to zero) and, even if I could, I’m not sure that’s the life I want anymore. I was given an exciting project to work on. I was able to spend time with colleagues (and friends) who have constantly checked in with me over the last 14 months. Thankfully I have supportive bosses in a supportive organisation, who recognise the value I can still add. I won’t let them down and am excited about getting involved in a project I can work on from my local station. Allowing me to add value, but in a less pressurised way. I’m delighted by the faith that continues to be shown in me and the unwavering support. Though, I guess somewhat arrogantly, I also believe I deserve it!! I’ve never ‘swung the lead’. I have been accommodated, but in line with HR policies and in return for hard work. It’s a win/win for everyone and I’m really glad systems haven’t let me down, as I know they sometimes can. 

In order to reassure family that I wouldn’t jump back in feet first and forget to be the tortoise, I promised that I would take today off on annual leave, to ensure I didn’t do too much, especially as I’m still on antibiotics. It was a good plan! I spent the morning today enjoying the company of my dear, old Dad. A thing those of us lucky enough to still have our dads  with us, don’t do enough. We had breakfast together, went round a few shops. Very leisurely, no pressure, no rush....... We chatted and we enjoyed each other’s company and it was lovely. 

This afternoon I had a long soak in the bath. Don’t worry...... of course I was careful!! No chances taken and I ‘checked in’ with hubby before and after so he knew I was safe. It was so good to soak my painful muscles...... my GP explained to me this morning that my muscles are sore after the seizure on Sunday because I may as well have run into a gym and bench pressed heavy weights from nothing! I hadn’t really thought of it like that, but I guess it makes sense....... of course my muscles are sore, they were uncontrollably tensed up like I was being tasered! A nice bath has helped.

Tomorrow I have the perfect mix of a gentle morning with friends (plus a haircut........ ‘the Jamie Lee Curtis’ has proven very popular, and I’ll admit to enjoying having a new look!), followed by an afternoon at work.

All these things are steps forward........ learning to live with..........LIVE WITH! 14 months on, here I am........ LIVING! Happily!! Yesterday I spoke to someone who has a family member that’s been living with similar for 7 years (he was originally given no more than 3......!) There have been so many points along the way where things could’ve gone against us. A simple turn of events could’ve led to very different outcomes. I know it still could, but I don’t feel like it will....... Thankfully it hasn’t been, and isn’t, my time. Seems people are happy with that! And I know I am. Still feeling nothing but love, support, encouragement and happiness. Living and loving life! Xxx

More challenge......

As we’ve learnt over the past 14 months, it’s nothing without a wee extra challenge every so often........

The past few days I’d been feeling very slightly off colour. Very slightly. Headache, sinus pain, slightly dodgy tummy....... nothing to write home about. Yesterday I was particularly tired and a bit more ‘hazy’ than usual. No big deal.

This morning I woke ridiculously early as usual and felt really weird...... I had ringing in one ear, sinuses killing me, and very dizzy when I tried to get out of bed. Thankfully, hubby was here and very understanding when I woke him at 5.15am to tell him I felt a bit ‘vulnerable to seizure’....... 

The inevitable struck at around 06.40am........ I had a small seizure...... lasting no more than 3 or 4 minutes. It consisted of a bit of twitching and arm flinging. I was conscious. Scared and freaked out, but safely lying on my own bed, with hubby ensuring I was in the recovery position etc. Unpleasant, but not life threatening.  He rang 999 and I was fully conscious and talking again before they arrived (although they were very quick as ever).

The shortened version of the story is this........ I’ve got a bug. A sinus and ear infection...... there’s loads going round at the moment. It gave me a very high temperature spike (39 degrees when paramedics measured it). Any mummy knows that a high temperature can cause a small seizure/ strangeness in a child......... its the same for an adult with epilepsy.......... The temperature spike caused me to have the small seizure. If I’d woken up and taken Calpol I’d probably have been fine haha.

As usual, Causeway Hospital became my haven and I was greeted into A&E like an old friend. Treated like a wee princess as ever. Lots of kind words, smiles and reassurances, on top of thorough medical care.  These guys are my heroes...... both in A&E, and in the Rehab Ward.  Today one of the first faces I saw was one of my former Rehab Ward nurses...... she’d literally just moved to A&E today and we laughed at me being her first patient! Can’t get away from me!!

Anyway, ‘my team’ kept drama levels low and set to work checking me over. The result? A bug and sinus/ ear infection. We got my temperature down and I started feeling better. 

Full bloods, chest x-ray, urine etc..... all fine. IV fluids, IV antibiotic, and home with a week’s supply. I was on my sofa, eating a bacon butty and lamenting my sorely bitten tongue by early afternoon. Sorted. Drama over. Rest of the day spent chilling out. Temperature being regularly checked (with the thermometer issued when I was in chemo), and kept in check with paracetamol. All under control. 

Having had time to digest and talk it over etc, I now realise yet again how fortuitously things went today....... my condition means I will always be at risk of taking a seizure. I generally don’t due to medication, but an infection / temperature spike etc can always leave me vulnerable. That’s my life now. It’s the same for many, particularly anyone who lives with epilepsy. The fact is that a small seizure will not do me much harm. It’ll leave me tired, but the bigger risk is from a fall or accident. Today’s experience was a wee reminder..... firstly to listen and speak up when I know I’m vulnerable. I left if too late to say this morning as I thought it would pass, although in hindsight the pre warning was clear.  A small seizure was bound to happen outside of a hospital environment at some stage...... today’s happened at home, lying on my bed, hubby by my side, and a quiet Sunday morning A&E! 

This is more ‘learning to live with’stuff..... and yet again I find myself hugely fortunate in timings and people at my side etc. Moving forwards we now know to have emergency plans in place just in case....... Nothing dramatic. Just emergency ‘places of safety’ and agreed ‘who’s contacted how / when’ stuff for both home alone and when at work/out with friends etc. Mostly it’s basic awareness raising so people know what to do when I speak up! It’s unlikely to need put into action very often..... hopefully never! As an aside, to anyone in a similar situation, the Health App on an iPhone is a very useful tool. I’d also recommend setting up the emergency SOS contact thing too. 

Another challenge, but all for a reason, and probably beneficial to have happened now and like it did, for less potential drama in the longer term. 

I have work related plans for tomorrow that also form an important part of my ‘learning to live with.....’ I’m going ahead with them. Safely and under supervision. Sensibly. But I’m not allowing myself to be set back unnecessarily. 

Having cancer sucks. Having a brain tumour sucks. Having epilepsy sucks. Having any long term medical condition sucks.  My life however does not suck at all! I remain very happy and optimistic for a long, happy, healthy, and hugely enriched life! I am surrounded by love, support, fun times and good things. Living and loving life...... gently, happily....... yep, we’re all good xxxx

Gigs, love, support, SPRING!

It may be snowing outside, but it is Springtime in my heart! What a few weeks!!

After discharge from Causeway Hospital just four weeks ago today, I am completely blown away by the leaps and bounds forward we’ve made!! It’s hard to summarise so much, but I’ll do my best........

Home - 

My house is spring cleaned, my ducks are in a row, my life is very much moving forward! 

Last night I attended my first gig since the end of 2016! My rocker friends, many of whom I’ve known and gigged with since my teens, overwhelmed me with the same love, care and genuine support that I’ve enjoyed from family, friends and work colleagues. 

It’s hard to describe without sounding totally gushing, but I am so humbled by the support I’ve been given. So many people have rallied behind me and become part of my fight and my story. 

Last night I went to watch The Temperance Movement at The Empire in Belfast. A big deal for me........ how would I cope with the crowds, the lights, the noise??........ I was treated like a princess!! The venue let me in early and got me seats etc. I got settled in, ear defenders on......... and then I just lapped up the love and support that overwhelmed me from all around! Enjoying the music and atmosphere of watching and hearing a live band...... the same as I have since I was a teenager! I sang and I smiled all night. Yes, I needed the ear defenders and I needed the seat, but I was so happy! I’m still smiling this morning!!

People I’ve barely met before approached me to say they read the blog and to offer encouragement and support. The gig circle is a tight and supportive one. Close friends who’ve been there the whole way through were just overjoyed to see me back out. Everyone on my side. Everyone giving me strength and support. I was hugged and kissed and encouraged and supported and praised..... I am overwhelmed and humbled by the sheer faith people have put in me, and your ability to get behind me. 

Work - 

I am back! A slightly different role and working closer to home, but very much back into things. As ever, bosses and colleagues have been hugely supportive. I’m excited about getting back and adding value to an organisation I’m very proud to be part of. 

My life is back! After a 14 month sabbatical, I find myself very much firmly back in the driving seat. It’s like I’ve been given a completely fresh start, complete with a totally awakened mind! 

I am now living with a brain tumour....... we’re mates....... We won’t fall out again. I am not scared or intimidated by her anymore. 

I’m just keeping a tight eye on her....... I think she’s clear now who the boss is........ I have an army behind me and I’m not interested in falling out again, but I WILL win again if she insists on another fight. She seems content with this. No-one ever really likes conflict anyway...... always best to work together......

We’ll officially check in on her in 3 months time with a scan. And then we’ll just keep engaging in a bit of ‘side eye’ with each other.......  Although both in the knowledge that I’m stronger, backed by warriors, and unafraid of her. If she misbehaves then we’ll go back to war, but we know what we’re capable of now, so it’s easier to be confident.

Life is good!

#livingwith #lovinglife #movingon #springingforward #overwhelminglove #iknowthebestpeople #completesupport #soloved #sograteful #sickeninglyhappy #feelingnothingbutlove #givingnothingbutlove #bestlifeever #affirmation #bitemeifyoudontfeelthelove 

Xxx

Spring in the air......

After a ‘big day’ on Thursday, I had promised myself a quieter day yesterday....... But then I woke up full of ideas and energy! After 13 months of being unwell, it’s hard to fight against a newfound lust for life! I’m eating well, sleeping well (for no more than 3 hours at a time, but very solidly while I’m under!) and am both physically and mentally in a great place. So I cleaned the house and even did a solo run into town.

Rather than sitting around waiting for disaster, I’m very much now ‘learning to live with.....’ My next scan is in 3 months. To date the tumour is smaller and not unhappy with me...... I’m respecting it, whilst refusing to be intimidated by it.

I’m building life back up. Gently and in a stress free way. More fluid, a bit less organised...... but just a little more structure than there’s been for a while.

Starting with a bit of a Spring clean, I’m now the proud owner of 5 shiny new notebooks and have been busy filling them with information, thoughts, ideas, plans...... There’s a work one, a home one, a health one, one for my sisters wedding...... Instead of everything being randomly scribbled in the same notebook, I’ve now introduced just a little order. Just enough. My inner geek rejoices!

I’m putting a bad 13 months behind me and starting afresh. Today was spent literally gutting my wardrobe. I think I’m left with about 20% of the clothes/shoes/bags etc that I previously had.  But what’s left is all freshly laundered and hung neatly (grouped and organised....). Just enough structure and order, but not too much....... I have also carefully injected lots of colour! The blacks and greys and navy’s have been replaced by purples and greens and blues. 

Spring has sprung in this house! The next stage of the journey........ Living with...... So far it’s a great section of the road. Xxx

Don’t flatter yourself..... you’re just a stat!

Always reassuring to know you’re not alone in being poisoned simply because of a lack of money, care and thought, combined with a creaky system....... 

I’m officially a statistic.......🤦🏻‍♀️  Though at least I’ve been lucky enough to be left with no permanent damage from it............Thanks to tenacious and dedicated doctors and nurses in Causeway Hospital (both in the Rehab Wards and Macmillan Teams).......

Great to see all the politicians rushing to sort it out....... God knows, this guy ain’t no use to us......... 

Here’s a radical thought!........ what we really need are some local politicians that have a handle on things......... You know? Some mature ones that understand what’s actually important to those they are supposed to represent and advocate for?

Oh god, we’re all doooooooomed!! 🙄🙈 I’m off to chain myself to Stormont gates......

<As usual, all views my own>

http://www.bbc.co.uk/news/health-43161929

Titanium!

Massively full and exciting day today! I’m exhausted now but will try to summarise today’s accomplishments.......

Firstly I managed to attend a RVH hospital appointment, without any nerves, tears or drama. I felt strong and I left with answers to everything I’d asked. My only very slight wobble was in a lift (there’s one in the old building that has very bad juju for me...... seriously......), but it was a ripple of mild anxiety and I was able to talk to hubby about it and stop there being any panic or drama. In control.

Then I went to into work and was further reminded why I remain passionate about working in an amazing organisation, full of some very special people. I left feeling excited at the prospect of getting back into my working life more fully again. 

My day ended with a homecoming to a box filled full of Lush! goodies for long, relaxing baths! (A gift from me to me...... and I’m good at picking gifts haha!) Plus a lovely thank you letter from the Consultant and her fabulous Ward colleagues that looked after me in Causeway (I’d sent them in thank you hampers). I’m trying to work out how to stop myself getting into a ‘thank you for your thank you’ thank you spiral!! But isn’t it nice when we all just take a moment to appreciate each other?

I spent this evening sending messages to a few people, just doing exactly that. Saying thank you. Appreciating people. Because I genuinely do appreciate each and everyone one of you that has shown me love and support over the past 13 months. 

You’ve backed the right horse....... thank you for the faith. Xxx

Who Am I now...... a year on?

My original blog post ‘Who Am I?’ remains my most read. In it, I defined myself in terms of home and work. So, one year on...... who am I now?

Honestly, I’m pretty much still just Trish. Except I’m a Trish with complete clarity about what and who is important in my life. I’m a Trish who doesn’t worry too much about things!

Home

I’m still a wife and mother. We are all so relieved to be through such a horrible year, and are spending loads of quality time and just enjoying each other’s company.

I’m still a rocker! I’ll have to be a bit more careful about gigs as I can get over sensitised by noise/lights/crowds, but I’m getting ready to start dipping my toe into that world again (ear defenders in hand...) 

I’ve got until May to acclimatise........ We have a charity rock gig planned in aid of Macmillan (‘Triciafest’ anyone??...!), with 5 local bands all generously giving their time. Should be a great night! And just to make it totally perfect, my sister is getting married during the day! 

So it’ll be a day of celebrations with family and friends, and an evening of celebrations, fun and music with family and friends! And all while gathering in money for the charity that helped save my life. Perfect!! 

https://www.justgiving.com/fundraising/triciafest

Work

I remain shamelessly committed to PSNI. An organisation that so often gets a difficult time....... no organisation is perfect, and as public servants (particularly given the context of NI) it’s right that there’s a strong accountability framework......... I still believe it is a good organisation that holds true to its core values and I believe the current leadership team are committed to moving policing forward. I believe it is happening, and am frustrated by the impact of political indecision and immaturity. 

Please note!...... This is personal opinion...... I’m not speaking for the organisation.

I’m still passionate about policing, and looking forward to properly getting involved in working life again. I want to do a good job and I believe I have skills that can make me a useful assistance to police officers ‘on the ground’. I am not, however, hell bent on career or promotion anymore. I will never be a slave to the grind again. 

I want to do a good job, make a difference, pay my bills, and spend my down time hiking, out in nature, enjoying reading, and having fun! 

So, who am I now?? I’m the best version of ‘me’ I’ve ever been! Physically I’m slightly weaker, but only slightly; 

I’m too skinny (but working on it....... successfully........ I don’t think I could ever adequately explain what it’s like to start enjoying food again after a year of what often felt like ‘force feeding’).

I use a walking stick. It’s ‘just in case’ and I’m relaxed by it. Using a security blanket is better than falling over!

I have some slight nerve damage from surgery and perhaps the odd neurological ‘twitch’. It’s slight and I’ve been assured not too noticeable...... rarely a day goes by that I don’t miss my mouth or spill something, but that strikes me as a very small price. Sometimes the odd stammer or facial twitch, but nothing dramatic.

Sometimes it can take me a bit longer to process things. Especially if I’m tired or feel like I’m being pressured. I’m learning to just step away from situations where I feel like this. I go easy on myself.

I have a very definite scar and indent on my head. Battle wounds. I’m not bothered by them.

I still have a bit of a pesky brain tumour. But it’s a lot smaller than it used to be and is currently on best behaviour. I don’t think about it too much and I don’t sit around awaiting another disaster. It’s a bit weird to know it’s there sometimes, but I don’t feel anxiety over it.

I am still the luckiest unlucky girl in the world. The last 14 months have been unbelievable, terrifying, heart breaking, nerve wracking and horrible for my family and I ........ yet we have been left with an affirmation of life and what’s important. A new attitude, with priorities completely sorted out and feeling relaxed and happy. We have made bonds and seen and done things that will change us forever, in a positive way. We are intensely and annoyingly happy, positive and full of zest for life!

Who am I now?? I’m Trish....... the one who loves life!

Xxx