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