Party??

I'm considering throwing a bit of a 'do'...... I thought I'd invite all the staff from my GP surgery and all the staff from the Cancer Centre. Seems it might be quite helpful if they got to know each other...... even just on a very casual basis. A team building type of event perhaps.....? Maybe if I did that it would save all the Surgery phone calls and letters telling me there's a variety of things wrong with my bloods at different times, with no explanations and constantly adding that wee layer of anxiety that you just don't need........ In reality it'll be something and nothing, but it'd be nice to not have to deal with more crap..... kind of have enough going on.

Gone Digging is a game I keep dealing hands (or arms or feet or ankles or wrists) for because I want to be sure everything is as it should be. I grit my teeth through something that can sometimes be complete agony because I'm trying to be brave and help myself. It's not a game I'm happy to be dealer for if the chips are being carelessly looked after...... Something wrong with my bloods? Explain it to me..... reassure me....... don't send a completely impersonal letter that isn't even signed. Don't expect me to deal more cards gladly without convincing me of your ability to be at the table. It's not s game, it's my life. And it's the wellbeing of my family and I. 

Now I get to spend a weekend trying to forget about it and not get anxious, and then a Monday chasing round trying to get someone who can explain, help and confirm a few things. 

I'll particularly look forward to the Call Handling  system...... It's 2017. Has no-one thought to set up patient email systems for general queries? Yes, it'd take a lot of managing, but could be reserved for patients with set conditions, and may save a lot of people a lot of time and energy in the longer term. I'll probably speak to 10 different people tomorrow...... one of whom might be helpful and might know the right person to go to. Wasting people's time? Yeah, I'm sure I probably will, but it wouldn't happen if there was a bit more front end efficiency. I'll stick that idea in the Ideas Box alongside the 'totally out there' consideration that mental wellbeing through relaxation/mindfulness activities might be better than dishing out pills.....I'm starting to think the best thing I could've been given on diagnosis is a Personal Secretary...... 

Pfffftttt. I once had someone tell me they'd never seen the sound of frustration and annoyance written as a word..... well there it is....... pfffffttttt.  I'm off to meditate....... xxx

Carlsberg doesn't do friends.....

But if it did......... it'd probably do the best friends in the world. 

I've found I have more than my fair share of Carlsberg friends. The people who have reached out their hands and shown me exactly what they're made of. People of depth, who have shown their love through selfless and sincere words and actions. Some know the importance of keeping me laughing, some ensure I don't stagnate mentally, some are big strong shoulders, some bring handkerchiefs and hugs, others practical support and advice ........ a few offer all those things in one person!

Last night I enjoyed the most wonderful evening with two of my 'all rounders'. I had seen an advert about a charity walk/run in aid of the mental health charity, Aware. You could do 5k or 10k and it was starting at 7pm in Portstewart. Enlisting my two friends, the challenge was set. Not a huge challenge to most, but a 5km walk is more challenging than  I'd like to admit..... If I'm being honest, it was the 7pm start that was a bigger challenge! I'm usually in bed by then, chilling out, and settling down to sleep by 9!! I had a think about what was realistic, and remembered that I'm not asleep at 7pm...... I go to bed to allow myself some rest and relaxation. What better relaxation could there be than a seaside walk with friends?? I don't generally nap during the day, so my battery starts to run down late afternoon/early evening. So yesterday, I allowed a wee afternoon snooze for an hour, got up, fed and watered and headed off to Portstewart with my friends.

It was the perfect evening for it. The usual sea breeze, but pleasant and often sunny. We had one shower, but as my friend reminded me "We don't get rain in Portstewart. That's just the spray off the sea...!" 

And so we walked....... and we talked........ and we laughed........ then we laughed some more. We shared too much information and then teased each other mercilessly about it. We laughed with dog walkers who's pug had just chosen to crap right in the middle of the path (I consoled them with a reminder that at least they have a small dog...... Our Izzy often deposits 'double baggers'...... sometimes even 'triple baggers'....... no cheap, poor quality  poop scoop bags in this house!!)

Probably my favourite moment was when a lady passed us who had the same name as one of my friends...... we'll call her Sarah...... so my friend, Sarah, shouts "Hello Sarah!". Laughing, I shouted "Hello Trish!" Quickly followed by my other friend shouting hello to herself too!! This is the silliness that reminds me everything is ok!! 

The organisers had 'mood boards' at the event. Various moods were listed and you wrote your name on a Post it note amd stuck it in the relevant box. There was a board for before the walk and a board for after. Ever the challenger, I decided on a few extra moods and posted them too! These included, before the walk, "Excited" and, after the walk, "Proud", "Appreciative of friends"...... not sure that's a 'mood' as such, but it's definitely how I felt.

I am so glad we did that. I am so lucky to have friends that make me laugh, yet have the depth and strength to deal with the more serious stuff too. Fearless friends. Beside me every step from day one. Friends that will get me through the whole journey, start to finish. 

"Piglet sidled up to Pooh from behind. 

'Pooh' he whispered.

'Yes, Piglet?'

'Nothing,' said Piglet, taking Pooh's paw. 'I just wanted to be sure of you.'"

Xxx

Gone digging....

There is a game some nurses play. It's one of those games they start playing by mistake but then it becomes such a challenge that they get addicted and just can't seem to stop.......it's not their fault..... it's like a hand of poker. It becomes impossible to walk away, even when they know they can't win. Professional pride kicks in and lures them into believing they must keep going or be branded somehow inferior. 

I call it 'Gone digging' and have fallen foul of it a few times now. If it actually were poker, I know at least two nurses who'd have lost their houses and probably the shirts off their very backs...... Not deliberately, not with any malice, very far from it, but lost all the same. 

Gone digging is taking blood. Sometimes they look at the hand (veins) they've been dealt and it's a royal flush. They know they've won and can confidently throw their cards on the table, enjoying the winnings and praise of the dealer!

Other times they are faced with a mix of valueless cards. They should probably walk away, or pass them to someone else. A fresh pair of eyes who might see a combination they've  missed. It's hard though...... the challenge is set. Walking away shows a willingness to give up. The dealer is encouraging them..... telling them they can do it........ making them believe she's 'willing' them a good hand and has plenty of time and determination to sit until they win......hmmmmm........... and so they get lured in......... arm, no good, another card please dealer. Wrist, no good, another card please dealer. Hand, no good, another card please dealer. Foot, no good, another card please dealer. Ankle, no good, another card please dealer. Other side.......

Eventually it gets to the stage where the House has to step in. Give up. Walk away. You've lost your house, now keep your shirt. Sometimes even House security (yesterday provided by an excellent friend to the dealer) will step in a little and gently suggest the player needs to leave the table. 

A few hours later another player can step up and hit a royal flush on their first hand. Nobody's fault. Just the hand that gets dealt.

This analogy came to me as I sit here lamenting the needle marks in my arms, hands, wrists and feet. Yet again, I'm reminded I'd never make an addict!! Not a bad thing I'm sure! During the mild but not deliberate torture of yesterday, I was reminded of an analytical report I once wrote about heroin use in NI. There are obvious dangers of heroin use, but there are also the other dangers that come with shared needles etc. I seemed to remember something about the dangers of using a vein in the groin........ I chose not to mention it....... Didn't want to start giving ideas..... the torture was already quite bad enough!! 

I am also, yet again, reminded of the value of good friends. My sister has witnessed a game of gone digging a few times. Yesterday it was a friend who really shouldn't have had to sit and witness that. He did. Solidly. If not for his presence the dealer may have swiped the.cards off the table and tipped it dramatically, catching the poor player in a hefty kick on the way past. Far better for everyone to maintain their dignity. Plus dealer got bought lunch after the game...... result!!

Nurses everywhere....... if the hand you're dealt  is crap and you're not an expert player, give it a shot and then give the hand to a tournament winner. There's no shame. Have confidence in your other abilities, be they kindness, humour or honesty. Those are all essential nursing skills too. Step away from the table and hold your head high. 

As the great Kenny Rogers told us all;

"You gotta know when to hold em, know when to fold em. Know when to walk away" (don't hang around to see if you ever have to run!)

Xxx

Had to happen at some point....

"Pooh was sitting in his house one day, counting his pots of honey, when there came a knock on the door.

'Fourteen' said Pooh. 'Come in. Fourteen. Or was it fifteen? Bother. That's muddled me.'"

From The House at Pooh Corner by A.A. Milne 

Knowing my memory can still be a little 

unreliable, I've always kept alarms set on my phone for when to take medications. Generally now it's only 7am and 7pm, although sometimes that can vary a bit e.g. If I'm in the middle of a chemo cycle or am on an antibiotic (as I am at the moment as s precaution for my ear). I meticulously make up weekly pill boxes and make sure my alarms are all set, every Friday without fail. I even write in my diary if I've taken paracetamol. I try not to take them, but when I do I never remember and am always conscious of how easy it'd be for me to take too many. As a result, I was suffering sometimes very painful headaches without taking anything because I wasn't sure if I already had, or if so what time at. 

I have been so careful, but I guess it had to happen sometime....... I'm on an antibiotic for my ear at the moment and take it three times a day, including at 5pm. Due to the number of containers in my pillboxes, I put the 5pm tablet in with my 7pm anti seizure medication tablet, but when alarm went off knew which one to take as they look totally different and I'm completely capable of sorting that sort of thing myself now......

My 5pm alarm went off during dinner and I went to get the tablet. All grand. Then my 7pm alarm went off........ I lifted the pill box......... hhhmmmm........ yep, no tablet in the pillbox. Have I taken it at 5pm? Probably. The problem is that anything is possible with me if I've lost focus......... I was incredibly tired at teatime after a busy day. Plus I was really enjoying my dinner! We've searched everywhere. No extra tablets in any other pillbox sections, not sitting beside, not on floor or under bedside cabinet, not on kitchen table where I was eating, not on any surface on route (bookcase, breakfast bar etc all checked), not in jeans pocket....... So I've taken it...... Right??....... Bound to have...... I've just made a mistake and taken the two together because they were in same section.......... of course I have........... If only I could remember doing it......... 

In true Winne the Pooh style I've sat down and concentrated really hard.... "think. Think. Think." Nope, nothing. Rationally...... I've taken it, I just need to trust myself. I'm not stupid. Also this is a tablet I take 750mg of every morning and night, and have done for months. Even if I have missed a dose, it's in my system. I haven't had what I would class as a 'proper' seizure since February, and that was straight after surgery, so probably not much surprise. I take 'absence seizures' but I don't generally even break my stride with them now.  They only happen at a level that anyone would notice if it's a really bad one and that's very rare and predominantly stress induced. And you'd probably only notice because I'd told you....

I rang the doctor just to be sure, but we're in agreement that the most sensible thing is to forget about it and just take dose in morning as usual. It'd probably be far more dangerous to take a double dose and it seems far more likely I've taken it. What I need to ensure now is that I stay totally relaxed, otherwise I'll trigger a seizure through stress whether I've taken the damned tablet or not!!

Reading and sleeps for me. Thankfully I'm knackered after another busy day. After a quick dog walk and visit to the in laws, it was off to the supermarket...... It's a whole new world of corguetti, butternut squwaffles, cauliflower rice and sweet potato fries.......  I was never really a foodie. Like the rest of me, my food tastes are generally plain, and I've no real interest in cooking. But now I know a really healthy diet can make a massive difference to outcomes, so I'm trying to help myself as much as I can. Hubby is very supportive..... which is just as well as he's really had to take over that side of things. I can't drive to go and buy stuff and the evening tends to be when my battery runs down just enough for me not to be entirely trustworthy with a cooker........ like the tablet, I may not always remember I've turned the oven on...... I'm trying to take on a bit more of the house stuff again now, as I'm very conscious hubby is out working all day and he really shouldn't be coming home to wait on me hand and foot. If I'm looking at back to work options, then I should st least start helping out at home too!! I'm not completely awful..... I tidy up, sort washing and do a bit of dusting, but there's little doubt that hubby is bearing the brunt.

The cooking could be interesting....... I've no idea what half this stuff is, never mind what to do with it!! But we'll get there. Gotta be worth it and I'll do whatever I need to do to help the medical based side of things. Before you know it I'll be wandering round farmers markets in sandals and keeping chickens in the back garden (though I suspect Izzy will object.....!)

I'll go to sleep slightly nervous tonight..... the 'seizure in the night' fear is one of my deepest rooted..... let's face it, that's what started this journey........ But, I spent months in fear, just not feeling safe. I'll never let anything make me feel that way again. 

I took the tablet, I'm relaxed, im going to finish watching Countryfile (I know.... but it's interesting!), I'm going to read and then im going to get a great night's sleep, just like I did last night!  Xxx

Gardens and revelations

I've had my sister over for a flying visit, so my heart is warm and my energy up!! Yesterday ended up being pretty full; with a visit from a girl from Marie Curie, District Nurse and then a wee Action Cancer foot rub! The support you can tap into is fantastic and I always find the charity reps and nurses very warm. Like friends calling round. 

I remain very tired, but certainly able to do things.... if sometimes a little slowly. My balance has been a little off, but I'm assuming that's the ear..... although it has to be said that the offending ear is starting to feel a bit better...... maybe....... sometimes.......

The main thing recently has been working through 'food paranoia'....... the list of foods to avoid etc when on PCV chemo is a little confusing for someone whom doesn't really  really think much about what they shove in their face! It's hard to get ideas for what you can actually eat and also that's quick and easy to make. We're not quite there yet, but we did sit down last night to cauliflower rice with chicken, scallions and tumeric...... very tasty indeed but unfortunately there's no way that's happening again until sis is back over!! The next investment has been a slow cooker and we'll take it from there....... my basic rule is that I've cut out anything processed and anything with a pile of preservatives. Natural, healthy fare. The problem is going to be finding time to buy it fresh (particularly with me unable to drive) and knowing what to do with it! I generally don't buy anything without cooking instructions stuck on the back, so it's going to be interesting...... We're all willing to give it a go though because it makes sense, and is known to make s msssive difference to cshcer pstients. Just another thing I can do to try and help myself........... ok then!

Today has been pretty much idyllic. Sis, hubby and I went to a place in Kells called "The Garden Across the Road"....... it's pretty much what it says on the tin....... a garden and another one across the road. It's used as a wedding venue and opened to the public on various days during the year. Hubby had seen it while working in the area and knew it'd be something I'd love. He was so right! 

It was simply beautiful. Not landscaped, manicured gardens; rather wild flowers, fairy houses and old bikes etc reclaimed by nature. We met three generations of the family..... grandad is very lucky I didn't kidnap him! An adorable man who'd had lymphoma, he's definitely in the list of 'people I'm glad I met'....... just a sweetheart. More warm, good energy people! Best of all was the lake......... there was a boat tied up at a small wooden jetty. I had to seriously resist the urge to jump into it and go for a wee adventure. A little blue fishing boat, exactly like the one I'd imagine Ratty rowing in Wind of the Willows!  

Interestingly, I'm sure I blogged before about my recent Wind in the Willows obsession........ I read it every day. Must be on my fourth time finishing now! It's just the most beautiful and relaxing book. I make a point of reading it if I'm feeling a bit overwhelmed. I've bought copies for friends too...... people who've done special things for me, who I know will appreciate it's beauty and who are maybe struggling to find time to relax. While at the gardens my sister and I had a random conversation about childhood toys...... the ones you dragged everywhere with you. She had a Snoopy....... he ended up so loved his poor head nearly fell off!! I had a Paddington. But while we were talking I suddenly remembered....... Moley!! I'd forgotten all about him, I'd been so young when I had him. He was just a wee cuddly mole, with a felt carrot-like nose. It occurred to me that maybe the reason I'm finding Wind in the Willows so relaxing is because I was read it as a child....... I can't think of too many other mole characters that a young child would feel they wanted with them everywhere...... It's amazing what the mind can lock away........ Having lost my mum when I was only 5, I now suspect that she used to read it to me. Truthfully, I'm convinced she did. I'm sure it'd be a psychologists dream, but I just think it's quite sweet that you naturally revert to childhood comforts when something scary happens. I'll keep reading it and taking the relaxation from it. I'm sure I'll know it off by heart soon!! 

Later on today I was with my beautiful reiki master, who worked her usual magic, ensuring I'm relaxed and calm and able to go back out into the Wild World again........ tomorrow......... for tonight I'll just stick to the riverbank. Xxx

Photos, stories and friends

When people say "It's just been one of those days" while crying, they usually mean it negatively. But sometimes it can be just the opposite. ..... it's kind of been one of those days for me.....

My son is a bit of a budding photographer and has an excellent eye, in my inexpert opinion! When I was first diagnosed we bought him a good quality camera, with the hope it would encourage him and also allow him to get outside and get some headspace. He quite often goes out and comes back with beautiful photos from around the North Coast. Every so often he forgets to charge the camera, or just sees an opportunity and takes them with his phone instead. He posts them on Instagram, often giving them really inspired titles. The other day he showed me one he took of Mussenden Temple at sunset that was just stunning. This morning I was really doing nothing productive at all...... people keep telling me to write a book or a short story, and I had a sudden burst of inspiration...... I lifted the faithful Surface Pro and wrote a very short story called "The Photograph", based on the picture he'd taken. I've probably listened to one too many 'sleep stories'......... Airy fairy nonsense no doubt, but I didn't care because it was for my son. Inspired by his photo. And for my husband and sister, with whom I've spent so many happy hours in the Downhill area, both before and since diagnosis. I sent it to him and told him to be honest with me, but not too brutal. He's a soft big lump, but he's not one to butter things up too much either. I was a bit nervous thinking about him reading it. I knew he was at work and probably didn't have much time on his break. Any parent will be able to imagine how much my heart sang when he texted to say it was 'lovely'..... self doubting, I told him not to lie if it was rubbish. He said it was a 'really nice read' before pointing out a typo! I was just getting my eyes dried when my door knocked...... 

A delivery....... of a beautiful cushion with a bee embroidered on it...... my sister! I can't even remember now why bees became our 'special animal'..... living in Manchester, my sister has long since held a love of them. For me they became significant through the sharing of honey shampoo, watching a bee keeping priest and a reiki master who's name can be translated as honey bee. Regardless, to receive such a beautiful gift in the post from my beautiful, strong and ever supportive sister was always going to lead to smiles and tears all at once! 

By 1pm my heart had been warned more than many have theirs warmed in their whole lifetimes. There was more to come..... as there often is...... a phone call from a dear friend who I love very much. Someone who picked me up recently when I was feeling very low. I had sent her a copy of The Wind in the Willows as I knew she'd 'get it'. I knew she'd appreciate the beauty of it and understand why I advised curling up in a quiet corner for some 'me time' with it. She did. To hear her delight and discover it had arrived at a time when she'd had a bit of bad news and felt a bit gloomy herself, reminded me yet again of the importance of surrounding yourself with a network of good, sincere and positive people. It all ripples out and all our lives are improved just simply by a bit of kindness to each other. 

I also received a few messages and shared online laughs today and yesterday from people I just like. Fun and positive people. The ones who genuinely have my back and are skilled at both building me up and making me laugh. I have an awful lot of those people...... they're great and I love them.

After story writing and relishing in how wonderful my friends and family are, I was off to the gym! To find out more details about the cancer rehab classes. My friend kindly took me as it seems everyone in this house is determined to go out to work daily!! I look forward to doing the same again myself. My friend is hilarious. One of the funniest people I've ever known. A ball of energy and fun. Exactly the sort of person you'd want around you. The gym girl was lovely. Very friendly and fun. She described the classes and I left feeling excited at the prospect of another step forward. My friend can even attend with me as a carer......... honestly not sure who'd be caring for who, but I hope the trainer is right in her assertion that it's a great fun class and that we will be 'assets to the class'. More buddies!

As ever, I'm not naive to the difficult road that's ahead, but I also know lying in bed all day will not help me. Getting the balance. I frequently get it wrong........ then I realise I've got it wrong........ then I fix it again, with the help of family and friends. Steps forward, steps back, steps forward again. Most importantly, my Support Team staying strong and not flinching. Xxx

After the storm....

"Toad leaned his elbows on the table, and his chin on his paws; and a large tear welled up in each of his eyes, overflowed and splashed on the table, plop, plop!

'Go on Ratty,' he murmured presently; 'tell me all. The worst is over. I am an animal again. I can bear it.'" 

You know the way after a thunder and lightning storm the air feels cleared? That's how today feels for my head. I can't think of any other way to describe it, even though I know it sounds a bit mental. It feels like there was a surge of electricity through my brain yesterday morning, sheet lightning across one side of my head. Leaving me exhausted but not alarmed. I didn't fight the exhaustion the way it's often tempting to try and do. I just went with it. A day in bed, reading.

Last night I slept a totally different type of sleep. A calm, relaxed nights sleep. I woke gently....... well, as gently as you can to a 6.15am alarm! I felt tired and had a headache, but very able to go about my day. Knowing how these things can change, and also probably because I was home alone with no plans, I haven't chanced my arm today. A quick walk this morning. I even meditated in a shady spot in the back garden!! Then a day spent organising a few wee bits and bobs, reading, and even a solo walk to the shop down the road to post a package...... We're back to celebrating wee things after the first chemo sucker punch, so that was positively champagne worthy!! 

I'll stick to water, but am very glad chemo cycle one seems to be leaving me alone now........ though I probably should learn not to say things like that!! No smiting please!! I'm trying to reassure friends and give hope to others that it'll get better..... it's not pride or arrogance. And just to beg my case further..... 9 months of chemo is going to be horrible. Rest assured of that. I can only do it because I believe what the specialist has told me, because of the support of my family and friends, and because others can do it and I won't be beaten. I'm definitely not suggesting it'll be a breeze, nor am I suggesting I'm a hero. I just feel so much better today and I'm happy about that. 

And finally..... the massive spider that my sister and I lost months back reappeared today.  I know I wrote about him at the time. The one my dog heard before she saw it! I recognised him..... and he waved at me just to make sure I knew it was him. I know I should've been kind and let him outdoors, but he was fast moving and clearly on serious amounts of steroids..... he has gone to the great web in the sky.   Another slightly interesting brain foible though..... I seem to have lost my chronic arachnophobia. Last year that big boy would've caused me to leave the room, squealing. Now he caused me to spring up and run st him without a second thought, and I even tidied up the carcass (still not convinced it won't block the drains! A big result of the perfect spider growing weather!) It seems there's only room for a certain number of phobias....... I've lost this one to make room for all the new ones!! Xxx

Awakening superpowers??....

It's been a weird few days..... mostly incredibly tired, some anxiety, but up, out and about a good bit. I hesitated about writing this one, because I don't want the men in white coats landing at the door....... but then I remembered, if that were going to happen it would've done so years ago! Plus there's no point documenting a journey if you're not going to be honest about it. 

Everyone who goes through treatment for a brain tumour will walk a different path due to the huge number of variables, but writing helps me rationalise things, as well as hopefully allaying fears experienced by others. Plus we already established the surgery turned me into Jim Carey in Liar  Liar and I remain completely unable to butter things up! 

The past few days, since finishing the first chemo cycle have generally been 'odd'. Mostly I'm just exhausted and with awful headaches, but managed to spend hours in town yesterday and am able to go for walks etc. I've been having madly vivid dreams and seem to wake up in a very 'bolt upright' kind of way...... there's no gentle wakening up..... it's a full PING, BRAIN ON! Mostly I've managed that through extra sleep and slow starts. 

Today was the same but even more so. I woke with so many thoughts in my head I felt like I was having an adrenaline rush. I could've run a marathon or written a novel. I knew it wasn't a 'normal' high so spent time relaxing myself back down to a more sensible level. Then I caught an extra few hours sleep, hoping I'd wake up a bit more normally. I didn't. This time it was even worse! A million thoughts throwing themselves round my head.... so many they were like dandelion seeds in the wind, with me completely unable to catch any of them....... then I began to feel like I could literally feel the signals moving through one side of my brain. Little electrical charges, tingling. I'm aware this sounds completely crazy, but as previously explained I'm not filtering. It wasn't frightening. It felt weird, but it felt like I was literally feeling my brain cells working. Like they'd been healed. Electrical pulses sending the neurones flying about and causing my head to tingle.

Logically I know there will be a scientific explanation...... some sort of seizure activity I'd suspect or a 'come down' from 10 days of very heavy drugs. I prefer to think I could genuinely feel my brain healing....... or the superpowers are kicking in........ Whichever!! 

Most importantly, there's been no panic or belief of impending death. Regardless of what it was, it really doesn't matter. It hasn't affected me apart from leaving me tired again. But I was already tired anyway. Have been for years ffs!! Brain tumours do that to you..... make you tired, give you headaches. The nice thing now is that I get to stay in bed when I'm tired. I can read The Wind in the Willows and relax. I wouldn't want to do that every day and am working on plans to ensure I can't, but it's always an option for when my healthy brain cells get particularly busy healing themselves and killing off the bad ones......

I've said before that our brains are amazing..... I'm even more convinced now. If I could genuinely feel my brain healing then that's amazing, equally so if it's due to drugs or the awakening of superpowers...!! I'm starting to feel a real urge to start looking at the whole 'how the brain works' side of things...... I'm resisting because I know I'll likely read something I didn't want to read and even more likely I'll start becoming an even bigger nightmare to my poor medical team!! Could you imagine??...... doesn't bare thinking about!! Dr Google doesn't do a degree in brain science...... neither should I...... Think I'll stick to The Wind in the Willows..... This week does also bring discussions about physical and mental projects....... seems like a good plan to me! A bit of work and a bit of exercise without a full leap into the real world is exactly what the doctor ordered. The fact is that my life has been completely abnormal for six months. I know I need to be careful and take things slow, but you don't generally get better by lying in a bed..... dipping a toe.......! 

"'Beyond the Wild Wood comes the Wide World,' said the Rat. 'And that's something that doesn't matter, either to you or me. I've never been there, and I'm never going, nor you either, if you've got any sense at all.'

The Wind in the Willows by Kenneth Grahame

There's no escaping the wide world and I know I need to get back into it for so many reasons, but I'll be keeping a good tight hold of Ratty and Badgers' hands!  Xxx

Rebellions and meltdowns

Two of my friends went on holiday to Canada at stages of their 'cancer journey' when they needed thinking time (independently. They don't know each other). My biggest rebellions have been to stubbornly (and completely illogically) refuse treatments at various stages, and tonight to eat a dirty McDonalds which is very likely to contain ingredients I'm not supposed to eat. Refusing the treatments was stupid and thankfully people took time to remind me that I'm not. The McDonalds was driven purely by hunger, laziness and a sudden craving. If I spend the night throwing it back up, I'm hoping it'll have been worth it...... it did taste pretty good and it was only a kiddies meal.......  I'm amazed by how good it can feel to just do something I'd have taken for granted 6 months ago.  I do remember getting my son to sneak a McDonald's into hospital just after surgery as well, so it seems my rebellions are very simple indeed....! For a heavy metal loving, frequent 'rule questioner' it seems I'm not becessarily the black sheep of the family I was always given credit for being...... 

Cycle 1 of chemo is now complete. I took the final tablets last night. It was tough going at times, but like everything before, manageable. Oddly today was probably my worst day. I had a very vivid dream through the night and woke hubby at 04.14am to tell him to be ready to answer the door because friends had found s recipe for a drink that stops all the side effects of my chemo and that they were sending some up, along with the recipe and some fresh ginger (an important ingredient....) He didn't wake up so it's just as well I appear to have lost any potential abilities to see into the future...... Anyway, the interrupted sleep, the build up of chemo, and the adrenaline of having got through another small stage combined a bit..... I woke up exhausted and extremely anxious. I slept most of the morning, trying at different stages to do things to get the bubbling tension abated. The problem with anxiety is that it can physically manifest in ways that can be indicative of something much more serious. So when my head is thumping, the blood is whooshing in my ears, I feel sick, my hearts pounding, and I'm physically shaking, am I anxious or is something serious going on?? This morning's nerves were a little unexpected...... though I'm not sure why........ it's change. That's what my underlying issue always is. I've just got used to one thing...... the first morning I wake up to something new will always be a danger time. I manage it pretty well now as a general rule, though today was worse than I've experienced for a while. 

As ever, I must've sent out some sort of distress signal energy. A few friends provided a bit of 'text counsel' and a friend arrived telling me she needed a hug..... she knew I was struggling, but she selflessly made it look like I was doing her a favour, getting her out of a job she was meant to be doing. We talked openly, I cried, she offered her usual kindness and, as ever, I was reminded of the wonderful group of people in surrounded by. My meltdowns are far less frequent now, but there is ALWAYS someone there to scrape up the mess.......... 

So now I'm back to being positive and remembering (as one of my wonderful medical team said to me earlier) "how far you've [ive] come". I've always had issues with change...... never my strong suit. But as they say 'it's the one thing in life that's guaranteed......' There are at least a billion quotes on Facebook about learning how to surf etc etc...... I think I'll stick with 'Suck it up, buttercup'! I've been dealt a crap turn, but I've got a treatment plan and an opportunity to get my life back...... I've learnt I'm a bit more fragile than I'd thought before.... big deal, people love a sensitive soul.... I'll have to live with something that I was already living with anyway....... I just didn't know it before! I've no idea if I've blogged this quote before, but it's a good one;

"What is true is already so.

Owning up to it doesn't make it worse.

Not being open about it doesn't make it go away.

And because it's true, it is what is there to be interacted with.

Anything untrue isn't there to be lived.

People can stand what is true,

for they are already enduring it."

—Eugene Gendlin

As I look at the suddenly massive font, I'm pretty sure I have blogged that before..... and been equally perturbed by the supersized text. 

Sure, what odds, the point remains the same..... we're all living with demons. They might be mental, they might be physical. We might be aware of them, we might not. But at some point they'll make themselves known. And we'll have to deal with them. If you're lucky, with the help of a strong Support Team. Suck it up, buttercup......!!

Cocky.......

What did I say the definition of cocky was again?? Did I suggest it involved thinking you were the bees knees for going for a walk and powering through headaches? Did I imply it was making out you're heroically charging through your first cycle of chemo, with nothing more than a few minor symptoms, probably largely brought on by anxiety? Did I say that being cocky, regardless of whether it was with the intentions of 'positive self talk', is often a trait of someone who has the art of speaking too soon, without learning how easy it is to scud yourself?? Me?? Cocky?? Possibly...... Definitely...... but not deliberately. I'm still learning the balance between being upbeat and positive and providing reassurance to myself and others that all is ok, whilst not underestimating the abuse my body has taken and continues to take.

They call it 'a journey' for a reason. It takes a long time, can be hugely frustrating, will include enjoyable moments and hugely horrible moments. But it's also a road travelled by many before. The number and size of the stones on the path will be different for everyone, but there will undoubtedly be a few boulders! 

Yesterday I spent some time 'taking a bit of control back'........ I made some approaches about possible work to be done between chemo cycles in order to keep my mind challenged, and I arranged to go and meet a PT who runs a weekly Macmillan rehab exercise class for those in cancer treatment. Part exercise class/ part support group seems to be how it works. Gentle, closely monitored exercise, in a safe environment, alongside others learning to adjust their lives. I was quite excited by both these prospects. I don't want to spend 9 months stagnating, particularly not between cycles when I'll hopefully feel a lot more like myself. So plans were being hatched..... slowly....... feelers being put out...... tentatively building a life back up..... another short term plan for the next stage of the road....... 

All was well...... then came a phone call. A GP telling me my bloods weren't quite right. As usual, I had no clue what this means. In my bid to prevent myself from getting over anxious, I really haven't educated myself in the way I would have if it were a family member or if it were less scary and serious. As a result, I often don't really understand the medical speak. Having gained some information about white cell counts, I rang the Helpline number I was encouraged to ring if ever you have any questions. I've rung it before and am quite sure the last entry was closed as "Tricia rang in a flap, completely overthinking something. She eventually talked herself down and is now fine. No further action required." This time was slightly different though....... a check of the blood results and a series of questions, before a call back to tell me to go to my nearest A&E.  Go directly to A&E, do not pass Go, do not collect £200........ Do you need me to send an ambulance to collect you?? No, I'm grand thanks..... I could probably have walked, albeit slowly....... 

I could write this up with a melodramatic edge, and make it into a really long story, but the short story is that if you're on chemo you're at serious risk of life threatening infection. As a result, if your white blood cells are low, you need a full check to make sure you're not showing any other signs of infection. I had some minor indications that could've suggested an infection. I'm glad they were thorough and take it seriously. As a result, I spent 5 hours in A&E getting checked, and then thankfully redone bloods came back 'perfect'. My biggest achievement throughout this was remaining mostly calm and still managing to share some laughs. 

A fantastic nurse. Kind, caring, definitely in the right job! And a doctor who was a very beautiful Russian. No nonsense, no fuss, explained everything she was doing and why. In both doctor and nurse I had that mix I've come to love of confident yet caring. It makes such a difference. They felt like safe pairs of hands. Plus a wonderful sense of humour, particularly from the doctor! When I (as usual, completely inappropriately) told her she was very beautiful and reminded me of a Bond girl....... she laughed and responded "I'm always cynical of compliments, because I have a mirror at home!"..... I told her "Well then you should look in it!" We shared fun Bond facts and she even quoted Pushkin to me (not an exact translation she told me, but wonderfully funny and appropriate to what we were discussing at the time!) 

So a bit of a drama, but not really a drama after all. As one of favourite friends in the whole world quipped after I got home "Bloods fine. Pee fine. For everything else there's MasterCard!" 

I guess this is the road of chemo. Hitches like that are frightening, but I'm grateful it's all taken so seriously. I certainly won't start panicking every time I wake up in a sweat or get a headache (which is probably just as well!), but I won't take chances and ignore any possible indications of trouble. I've said from the start that I 'won't die from stupidity'..... I keep the alarms set on my phone to ensure I take my meds, I don't take unnecessary risks, I obey the diet rules, I try to look after myself physically and mentally, and if I'm worried about something then I'll ask. I'm no hero! 

After a late night and bearing in mind I'm still taking my "cyanide capsules" every night, I had a very lazy day today. I went back to bed and have done nothing more challenging than laugh with my mate.....the one who sent me the video of him lip syncing to Whitney....... not exactly a pressured day! The height of this evening's plans are that  I will get out of pyjamas, go for my evening walk, force feed myself and then go back to bed...... Just for today. Tomorrow I've got hubby at home so a taxi and a Zimmer frame all in one!! The possibilities are endless!!

My friend starts her first chemo cycle this afternoon. I am holding off posting this for fear of causing her any unnecessary anxiety..... though she's far smarter and calmer than me, so I suspect I'm worrying unnecessarily! A tower of strength, this girl was having charity coffee mornings when I 'wasn't doing public' and then decided to go abroad to get her thoughts straight...... as I clung to family and friends....... No, I can't imagine her being even remotely phased by a wee blip. I am hugely proud of her as she jumps into the next stage of the journey. It's scary, but as Ralph Waldo Emerson is attributed with saying "What we fear of doing most, is usually what we need most to do".  My oncologist told me "Let's throw everything at this"...... that's what we're doing. That's what everyone doing chemo is doing. Warriors.

Xxx

Pass me the tequila.....

I've been writing and rewriting this for hours and ended up deleting the vast majority! Sometimes there's oversharing to a whole new level...... So I've cut it down to the main things I'm trying to say (keep in mind I'm very, very tired and it can be difficult to express what I'm trying to say. As ever, some will get it and others won't.)

Two pieces of advice for myself to read before cycle 2 of chemo.....

1. Tequila can be a bad enough night out but never, ever forget about or underestimate the hangover. 

After the initial 'polite boak' and feeling a bit crap, yesterday and today brought episodes of low blood sugars, headaches like I couldn't describe, nausea, chills, and a tiredness that almost can make it impossible to see straight. This change in symptoms, as always, fed into my overthinking mind.......sometimes I feel like I've developed a list of fears that would put the Cowardly Lion to shame! Thankfully though, we just work our way through each one. When an old one creeps back in then I use the skills I've already learnt. When a new one creeps in I usually panic, annoy the head off close family and friends, cry, and then learn to deal with that one too. Staying on the Yellow Brick Road. Not always  skipping and singing, but always moving forward.

2. The definition of cocky is "Conceited or confident in a bold or cheeky way." Remember that when you're patting yourself on the back very early into your first cycle of chemo. When will I ever learn that everything keeps changing?? This is both a pro and a con. In reality, this is just life. It's probably just a bit harder to deal with when your life largely revolves  around one, very unpleasant, thing. That in itself is something I'm starting to give serious thought to....... once I have s better idea of how chemo is going to look for me, it's going to be essential to go back to being something more than just 'brain tumour girl'. 

Yesterday afternoon brought a different set of challenges....... low blood sugars, a headache like no other, shakes...... It's also really hard to eat when you've got a list of food ingredients to avoid that includes "concentrated yeast extract". What even is that??? Is it in bread? Pancakes? Cereals? Fruit? Plus my high protein snack staples of bananas and flapjacks are now out. I'm hungry but really too exhausted to eat. Sitting down to a big meal would be unthinkable, but I know I'm not eating enough, and my blood sugar levels clearly agree! All my routines are thrown into the air again. There have been panics and tears and drama....... and now, yet again, the realisation that it'll be ok and I just need to stop overthinking everything. Eat what you fancy (so long as it's not on the list). If you're sick then you'll know not to eat it again. Yes, make yourself get showered and go for a walk, but if you're truly exhausted then it's ok to be in bed the very odd day and even have a wee afternoon nap! 

So today has consisted of forcing myself to eat small amounts every few hours, sleeping and being reminded how wonderful my family and friends are....... At one stage earlier I again actually began to believe there was a literal distress call that went round people close to me when I was struggling....... a 'She needs us"' WhatsApp group or something...... I've thought this before, but have been assured this isn't the case. In fairness some of those who were exactly what I needed today are not people who'd naturally be in a group together..... many wouldn't even know each other. I know I've said it before, but how do you know??? It amazes me every time! Clearly there are family and friends that I'll openly call out to when I'm feeling really unwell and am upset, but there are ALWAYS others who just pop up when needed most. Energies? Kindred spirits? I have no idea but I love that it happens.

So after hours of writing and rewriting an exceptionally boring blog, where are we?? Chemo sucks. A night out on tequila is way better, but unlikely to save your life. I'm exhausted and feel like crap, but I'm fine. I'm in my own bed, have been out for a few walks, showered, and able to blog....... Its undoubtedly hard work, but it's been hard work since 20 January. My body is killing bad cells and trying to repair good ones. Whilst still healing from surgery and radiotherapy. Isn't it amazing what our bodies can do?? I've struggled with the drugs from the start.... chemo was never going to be fun for me..... but it's fine, and I'm doing it, and at some stage it'll be a distant memory. I don't remember giving birth to my son almost 19 years ago. I don't remember the awake surgery I swore I'd never forget. I don't remember my first radio session. And I'm quite sure I don't remember chemo either..... though I will remember the stuff I'll be doing in between cycles...... gggggrrrrrr  xxx

Psychological warfare

I guess we all have an image of what it's like to undertake chemotherapy. I've no doubt for most it's a very negative one. It certainly always was for me. I can remember having theoretical (and completely full of crap) conversations in which I declared "I just wouldn't do it. You're poisoning your body. If cancer's in you then it's in you. Not much you can do." I had no idea how much naive, ignorant nonsense I was capable of spouting out. These things are so easy to say, until you're faced with the realities. The truth is that it's easy to fight against medical advice...... because that's the easier option. If I could heal myself without having to do chemo then of course I would!! Sometimes it might be the right thing to do but the fact is that the science is there to support positive outcomes for my tumour type at grades 2 and 4...... the research hasn't been done for grade 3 but it doesn't take a brain surgeon to work out it's likely to have positive outcomes too (with a reminder that the fast majority of my tumour is grade 2). 

I opted to do chemo because my oncologist gained my trust and respect and because, like her, I'm prepared to "throw everything at this!"  I didn't want to do it and spent much time subconsciously trying to get an easy way out. Partly I think because I've always had a slight doubt and natural questioning of authority and I never, ever do things just because I'm told to!..... but mostly probably because I was scared. 

I'm still scared, but the reality is that people do far more aggressive chemo than the type I'm doing. After IV on Tuesday, I take tablets every night for 10 days and we're now at Friday...... at the risk of completely scudding myself, I've been politely sick once, I'm very tired and definitely wobblier on my legs than I have been....... but have still managed to go for short walks, have friends visit, and even suffered a short visit to the supermarket yesterday evening.  I'm not enjoying it, but I'm not lying in a hospital bed with no quality of life. 

As ever, the biggest challenge remains keeping myself calm. Making sure I don't jump ahead and start writing a whole story around the tiniest of things. Just chilling out!! Not an easy thing to do when you're used to getting up at 5.15am every weekday, driving 55 miles to work, getting stuck into work and getting home around 6.30pm at the earliest. Add in the frequent gigs.... often midweek..... and the weekend hikes....... and it's not much wonder I'm having to work on discovering different ways to still my mind. It seems to just whir constantly. Usually not in a bad way, but when it does turn it can be debilitating. I never would've believed I'd be the one waking up in an anxiety attack or bursting into tears out of the blue, often with no idea why. I write about it, in part to let others know it's ok, and also to remind myself not to be ashamed of it. The one who's talking about it, isn't the one you really need to worry about I wouldn't think..... So I'll unashamedly admit that I've woken up the last 2 mornings in a panic, with no real explanation. Feeling tired and nauseaous is, I suspect, often more to do with my anxiety than the chemo! It's certainly not helping. I continue to work through it using relaxation techniques, humour and the support of family/friends, but it's often a daily battle for me that I reckon has probably been harder than the physical one.

Another big, current challenge is around food. You're advised against certain foods and this has removed a few of my staples...... bananas, nuts......great high protein/ fill you up snacks that I now can't eat. There's a list of other stuff that basically removes any sauces or gravies. Even things like broccoli. You can try them but they might make you sick....... I'll not bother taking the chance thanks! It's going to be a bland old diet in this house......I'm going to have to find some other options, or I'll be a very hungry girl. Though I've somehow managed to put on half a stone since surgery! You're told to eat protein rich foods during radio and I take these sort of instructions seriously! Now I'm having to rethink it all again, but at least I have that half stone to play with.

Ten days of tablets and six cycles of treatment over around nine months seems like a lifetime to me. It's like the radio...... 30 treatments, 6 weeks felt like forever. Then it flew in! I don't want to wish the next 9 months of my life away, but I also know it's incredibly difficult to commit to anything as I just never know what's going to come next. It's going to be a long stint, but by Thursday I'll have the first one finished. Each cycle can affect you differently, and I expect I'll learn a few tricks along the way..... But I can also see how I could genuinely have more of a real life back in between treatments. It gives me valuable healing time too, that I didn't really get post surgery or radio. I could do with a chauffeur and I really need this eardrum to fix itself, but I think I'm crawling back a little bit....... Impatience is fairly pointless at the moment, so I'll stick with just seeing how things go..... 

Not my most amusing of blogs..... im tired and I'm allowed to be serious. I'll try to do better next time! Xxx

Chemo vs tequila

As an adult I've rarely been sick..... it seems I wait and do it in style! Actually throwing up sick is a rare occurrence in this house. Thankfully! In fact I can't think of the last time I threw up that wasn't alcohol induced...... until last night...... It seems anti sickness medication will only take you so far! 

I used to always say "there's nothing worse than throwing up. You always think you're dying!" This isn't true. When you really know what it feels like to be faced with death, you realise a quick, quite polite boak, is really actually fine. I woke just before 1am and it was never going to go any other way..... I took an anti sickness tablet, but then no doubt threw it up again a short time later. 

Again, at the risk of sounding stupidly positive...... I've genuinely had far worse from tequila! This wasn't a room spinning, stumbling about, hanging into the toilet..... this was more of a polite, 'that lasagne from earlier has to go', into a lovely shiny new basin that had been purchased to provide some comfort and security. I was fit enough to clean it afterwards, and used a bit of deep breathing to get myself back to sleep until the 6.20 alarm. 

It could've been far worse. I still feel fragile and suspect I may have a but of a 'bed and basin'  kind of day...... but at least I don't have to suffer the flashbacks of bad dancing and allowing myself to be pulled up on stage to sing "Edge of 17" with the band! (Years later I still hold onto the nickname of #6, for becoming the sixth member of a five member band... Great local  band called NASA Assassin...... check them out if you like rock with a bit of quirky fusion! Plenty of YouTube footage, though I recommend a live experience to totally 'get it'!) 

So if I was comparing chemo to tequila, I'd say tequila is the more evil of the two. It causes you to think you can dance and sing, removing inhibitions that are there for a reason, and then rewards you with a night of toilet hanging. Chemo, however, is hugely unpleasant to receive and may result in a polite, early hours of the morning, 'rejection'. Tequila will make you laugh in the short term but cry on the long term...... Chemo will hopefully do the opposite. Xxx

Ding, ding,Round 3...... chemo

I reckon I've won rounds 1 and 2 (surgery and radio) on points. Now I'm into round 3. Be good to get a knock out at some point, but I guess sometimes you've just got to keep the stamina up and keep going.

I'll not lie, the first day of chemo was terrifying. I was awake at 4, thinking I'd slept in, and up at 6.15 with my heart pounding in my chest. I tried to divert the emotion but really just ended up a.bit hyper. Hubby had the tears this morning....... I'm sure people drive past us walking the dog and wonder why I'm often crying at 7am!

As usual, my sister and best friends were there in waiting. A wee meet up for a cuppa before heading up the road this morning kept me motivated and confident. My poor sister took the brunt of my anxiety as I ran over every trauma we've ever experienced in our lives. Hubby had to listen to some tears before work too...... truthfully I really couldn't explain why I was crying. Probably mostly the 'this is crap' tears, where you just feel really sorry for yourself. 

Spurred on by my back up team, I donned my "Secretly hoping chemo will give me superpowers" t-shirt and we headed up the road. I cried on and off at various points and sis talked me down.  We arrived in good time and shared a sandwich before heading up for the next steps. I'll openly admit I was fragile. More so than I've felt for a while. Just that bubbling of tears and fear sitting in my chest and stomach. I was deep breathing, reading relaxing magazines and sharing laughs, but it was definitely there. 

As I watched my consultant walk in I said to my sister "I am NOT crying in front of her again! She thinks I'm not psychologically strong enough to do this. She can f*ck off, I'll be doing it!" Needless to say I did cry in front of her, but for different reasons than before....... partly every meeting with someone senior reminds me of what's going on. I have to face reality. But honestly, this time I cried because I realised I liked her and I felt like she liked me.. I felt like there was something of a mutual respect passed between us. To have a rapport with her is vital for me, and today I felt it for the first time. I trusted her. I believed her. She wasn't sugar coating, but she was confirming what I already knew; that everyone is different and that all my treatment has gone even better than expected. She told me she had faith in me. That I was fit and able to do the chemo and that she, as the expert, believed it was the right thing to do. Just like my surgeon...... I'm the expert. I know what I'm doing. I won't take any chances with you. You do your bit and let me do mine. It was like a corner completely turned for me. I felt s warmth from her I hadnt felt before and, most importantly, I believed her. The next leap of faith became easier again. So I cried with relief to some extent...... and also because I was so glad I'd found another person I could trust. When your life is in someone's hands, you have to trust them not to let you down. Today I felt that. So I cried. Yet again! No doubt leaving her thinking I was completely unstable and unable to complete the treatment. This won't be an issue. If I say I'm doing it, then I'll do it...... 

And I did. The next challenge was with getting a cannula in....... my veins just really don't like them!! The nurses were wonderful and very kind and reassuring...... but it was the fourth one who eventually got it in. I didn't mind that so much..... it wasn't another RVH 6 veins, this was different people trying to get s needle into rubbish veins. Eventually we got there and then began the 5 minute infusion. Unpleasant. Definitely. I hate taking tablets, I hate things going into my veins even more! But it's 5 mins. I can do that. Deep breathing through the tears and then it was done. I've done far worse. It's been agreed that a pic line will be put in before my next treatment, to remove the cannula challenge/trauma every time. Definitely the plan for me I think!  Bearing in mind, I begged RVH to leave a cannula in me before I left, swearing "you take that out of me and you're never getting one back in. I'll never let anyone near my arms again!" At one stage I'd even had one in my foot! The pic line goes into my upper arm and stays there. It can be used for everything; bloods, chemo, scans. Dead on by me!

So now I'm home. I take 10 days of tablets and that's me until the next time. Most common side effect is being sick for a few days. I've got anti nausea medication and a positive attitude that it won't happen! My plan now is to still get out for my walks, but other than that just rest up. Give myself a few days to get over the emotional stress of the day, never mind the physical. 

Most importantly...... one down, five to go! Radio was 30 and every, single day..... I did that, I've got this. The whole thing remains crap. I don't think I'll ever really understand what happened. But we're 6 months in now and have another 9 months of treatment. Plus potentially a lifetime (hopefully a long one) of scans. That's called living with cancer. People all around us are doing it, many who are older and frailer, or don't have the support team that I have. 

Some of my radio loss hair is even starting to fight it's way back...... it's not as strong willed as the surgical loss hair. Fluffier,......paler...... stringy. But it'll get there. I'll have the best mullet ever in no time at this rate! 

I'm now at least an hour past my bedtime. It's been a long and stressy day. But it's another step forward. I'm off to enjoy one of my "Calm Sleep Stories"...... then a good nights sleep and a restful day tomorrow. And maybe the next day. But then it's back to building life back again! Even if it's a quiet life for a while...... we'll see. Hopefully not too quiet all the time! Xxx

That awkward moment.....

Do I look silly?? Honestly?? You have to tell me if I do! Don't let me make a fool out of myself. Hubby and son (neither of whom have much tact) both reassured me I didn't and that it'd be fine. That I was right going with my instincts and knowledge of my friend. So off I headed to a funeral in a flowery dress and straw hat.... even pink shoes to finish it off. Son was warned "Remind me I haven't worn heels for 6 months, and my balance isn't great. Don't let me get carried away with myself!" Wise advice..... thankfully no falls, but a few stumbles, saved by holding his arm. And off we went. Down to my friends funeral. I felt a bit unsure of myself...... I never really was a 'flowery dress' type and I was definitely not looking in the mirror and thinking I looked good. I was seeing the black rings under my eyes, the Adam Ant stripe across my nose, and the headscarf under the hat (just in case it's windy)...... 

We arrived and of course couldn't find the chapel. Although I do believe my friend would've been amused by me having to ask directions at the Presbyterian church....... "I'm going to a funeral" I stated, as the direction giver looked me up and down in disbelief, before saying "I'm just here because there's a dance school on"....... I'm not judging you stranger!! I don't care which place of worship you go to..... whether to worship or to dance (or both!) 

So off we go again, arriving at the chapel to a sea of black...... oh no!! It's like the naked dream I've never had but is famously talked about!! Am I seriously here in a flowery dress, straw hat and pink shoes?? Thankfully my son looked marginally more appropriate, though still fairly casual...... I considered leaving. Turn around. No-one needs to know. But then I remembered why I was there. To honour my friend. To help celebrate her life, as she instructed us to do. So we got out of the car and joined the black suits milling about outside. I was deep breathing and hoping against hope that I wasn't about to totally offend the family...... when the procession arrived, and out got her sister...... in a jumpsuit resplendent with pink flowers! Phew!! The service was short, but lovely. 

Afterwards her family reassured me that she'd wanted colour and that I hadn't read things wrong at all. I only knew her a short time, but the woman I knew was definitely not blacks and greys. She was funny and happy and brave. Purples and yellows and oranges. I was reassured further when the musicians approached the family to ask when they wanted "Sweet Caroline" played...... her sister and daughter confirmed to me they'd been told "You can cry when I'm taken in and when I'm buried. After that, no more tears." That's very much the woman I met. She had told me that she had planned her own funeral, even picked her own headstone because "Sure you wouldn't know what they'd choose!" Absolutely resolute in her faith. Fearless. Our Ward mummy, who would do anything for us. I'm so glad I didn't get it wrong for her....... though it'll be a long time til I have that dress on again...... it's probably a bit too short and being a bit silky it rides up horribly when you sit down...... note to self.......I'd actually never worn it before today, yet it jumped right out at me when I opened my wardrobe at the weekend to decide what to wear. 

Back to leisurewear now I think....... not every day, but certainly on treatment days!

After the funeral I was able to push myself to a very short visit into work. I miss my team and it was great to see the couple of them that were about. Plus a few other well earned hugs from people I care about and who continue to keep me uplifted.  Lunch with a dear friend and a journey home singing with my son. Softly..... my ear is still totally stuffed :(

Tomorrow is Independence Day. Part 3 starts there. Hubby pointed out this morning "If we were going to Belfast, we'd be in Antrim now!" A good analogy, except for my inability to resist "Aye, but we've still the hill section to do! I hate that section. It's by far the worst bit. They slam on their brakes for no reason!" Well chemo.... slam away..... I intend to be driving at a very steady pace, obeying the stopping distances, and choosing the correct lane..... xxx

Pride, relaxation and obeying instructions

I remain hugely proud of my fellow warriors. In the past few days alone, one has told me she's off to Canada to get her head straight, another has also gone to Canada because 'frig it, I'll not be able to do it for a while' and a third has gone on a cruise round Italy, Spain and France! My heart sings for each of them, I'm so proud and in awe! I still fight a bit of a confidence battle and couldn't imagine going abroad at the current time. I'm a lot better than I have been, but it still dips, and sometimes it can take a lot of work by me (with much help from others) to maintain the ability to live a life and resist the ocassional urge to hide  under the covers.

I keep saying I'm going to have a jammie day, but rarely carry it through.... I didn't exactly stress myself yesterday, with my big aim being to shower before reiki! Mission accomplished, I'm glad to say. As usual I came home relaxed and more confident in myself. I'm becoming quite good at meditation I think...... and am amazed at the difference it makes. I know there's research etc, but it's only when you feel how much it helps that you really believe it. I maintain my belief that it doesn't matter if you take your quiet moments in prayer, meditation or another way..... so long as you do it! Block out the world for a while. Learning 'how to breathe' and visual imagery have been the most important things for me...... allowing me to settle my overanalysing mind, calm anxiety and deal with potentially panic inducing situations. 

Tomorrow I am going to the funeral of a former wardmate and dear friend. Even now, she continues to help me. I will always be inspired by her attitude and ability to keep smiling, despite being faced with an awful diagnosis with no available treatment. She reminds me of how lucky I am. Plus my memories of her make me smile. She was very strict the last time I saw her that she would always be with me and that we were to celebrate her life. I only got to know her very close to the end of her life, but it's not hard to celebrate her. Tomorrow I will go to her funeral dressed more like I'm going to a wedding., because I know she'd like that. I know my choice of a bright coloured, patterned dress and a summer straw hat will be approved of.  My need to honour her means I will be out of PJs, leisurewear and (rarely) jeans, for the first time in the past 6 months! So she continues to inspire and motivate me, just like she did from across the ward after my surgeries....... when someone is off getting showered and their hair straightened no matter how much effort it takes, and you're deciding whether to scratch your nose or ask your sister to do it, it's pretty hard not to give yourself a bit of a shake! Making an effort for her tomorrow, feels appropriate and I know I'll go home with a sense of achievement that she has given me...... yet again.  I do sometimes still worry that I'll just get it all completely wrong...... I never was very good at 'being a girl' and that hasn't really changed. It's a bad job when you're looking at yourself in a rather fetching and pretty hat but are still asking "You know that bit in Toy Story where Buzz Lightyear is stuck with the wee girl next door, and she's having a tea party? I don't look like that, do I??"  I have been reassured I don't..... by people who wouldn't allow me to go out in public if that were the case. My son is going with me, and there's no way he'd be seen with me if I were rocking a Buzz/Mrs Nesbitt look........ Whats truly reflective of the confidence knock that serious and unexpected illness gives you is the very fact I even have to ask! It'll just take time to get back to the 'f*ck it, that looks grand. What're you looking at me like that for?? I know you don't like it, but I do. If you don't then don't look at me' Trish......... but she's still there...... just being coaxed back out. I wish I wasn't saying goodbye to my friend tomorrow, but I'm extremely grateful for everything she gave and continues to give me. Xxx