More hugs not drugs

This blog entry is purely to share something that I found very funny. As ever, some will chuckle with me and others will scratch their heads. There's nothing particularly interesting or revelationary in it, but it made me laugh. Hopefully it'll make some other people laugh too.

Anyone who's regularly reading this blog, or who knows me, will know I don't like taking prescription drugs. I know I have to take particular ones for my own safety and I do what the experts tell me to do. I'm doing chemo......... I think that proves I'm willing to take what the experts tell me I need to take! I do not take any medication lightly however. I know the stats around prescription drug abuse in this country. 

Local abuse of drugs like diazepam is a problem that has been growing for years. One that is often incorrectly blamed on police....... Clearly, some of that is street and online sales, however there is also a frightening level of overprescribing and a cultural acceptance that popping a pill will make you feel better. Police have their part to play, but Dept of Health etc also have a huge amount of responsibility in this area.  It needs a collaborative approach to solve the different parts of the problem. Hard to do when you have senior politicians acting like children........ Not s great example to be setting. Whilst part of our charm is the fact we're often a bit behind the times, it'd be nice to see us trying to embrace more complimentary therapies. I'm not talking about plants etc with no scientific research to back them. There are an awful lot of snake oil salesmen out there preying on desperate and vulnerable people. I'm talking about relaxation therapies etc. It'd be nice to see more walking groups and classes showing people how to deep breathe. Most available tend to be supported by charities rather than govt. No research to support? Do the research. Pills might be cheap in the short term, but you'd save far more money long term by finding other ways.

Hmmm, did I get a bit opinionated?? I'm reigning myself in..... Please note, all views expressed are my own, and may not be reflected by the organisation I work for, my friends, family or someone I've vaguely brushed past in the last few months..... 

Not very funny so far, I hear you cry...... Fair point. Back to the point.... there's always a point, it can just take me a while to get there!! A friend once called it 'meandering'..... I quite liked that. And I like that he said it about two years ago, so nothing has changed! Anyway, the funny bit......

I'm sometimes quite 'difficult' about prescription drugs. I don't like taking them. I've no doubt psychologists would tell me it's 'a control thing'. I've found most medical professionals have been pretty good about this quirk. They explain things to me and reassure me. 

Between my two surgeries, while in hospital, I took a seizure. Not as significant as the original one that started this whole mess, but big enough. As a result I had to be started on an additional anti seizure medication. Makes sense. There could be absolutely no risk of me taking another one during the awake surgery. Unfortunately this drug has a name that sounds vaguely similar to fentonyl. That's not what it is, nor is it in any way similar. I had made my feelings quite clear about the fact that I didn't want it. I was frightened and stressed, and was in between two major surgeries, so it's probably fair to say I over reacted.... I don't really remember, but I do remember being convinced they were trying to give me it in patch form and tried to remove the sticky covering on a cannula...... Eventually I was calmed down and reassured it wasn't fentonyl I was being given and not to panic.

Fast forward a few months to now. I'm still taking a small amount of that anti seizure medication, with the aim of both my neurologist and I to get it stopped asap. You can't just stop taking anti seizure meds, especially while getting chemo, so there has to be a longer term plan. Reality is that I'll probably have to take something for the rest of my life, the aim is as little as possible of the one proven most effective.

Longest

Story

Ever

A former Ward mate sent me a news story the other day about fentonyl being found mixed with heroin on the streets of NI. She asked me had I managed to get off it because she knew I hadn't been happy taking it!! Those of you who are still reading are likely to be work colleagues who'll hopefully see why I found this funny! It bothers me to take paracetamol, I don't think I'll be starting on the   heavy opiates any time soon.......

Perhaps not that entertaining, but I thought it was funny..... xxx

The girl got big...... Whole lotta Rosie

In my humble opinion, you cannot legitimately claim a tree is the fattest Sitka spruce in Ireland if it hasn't been measured in 55 years....... 6m in 1962 is all well and good, but it's 2017! That's lazy advertising for a forest that's beautiful....... and contains a beautiful tree! Kids and adults alike are drawn to it.......if you've any any appreciation of nature at all then you can't help but go over and hug it! 

That sort of curiosity isn't something I'd ever want to lose, however I'm happy to accept that time off work and a life shock have made me worry less about what others think. You might think it's a bit weird to go and measure the width a tree because you're curious?? I humbly suggest that you're taking life too seriously. Thankfully I have family and friends who aren't afraid to embrace their inner curious child...... or trees........ 

So let's not drag it out....... the fun ones amongst you are dying to know....... the ones who've kept hold of childlike curiousity because they understand the important things in life........ So for you...... 

our Sitka spruce has put on quite some weight....... she is now 7m 6. I tried to find out the average rate of growth of a Sitka spruce in NI, but ended up going round in internet circles. 1m 6 seems to me like a healthy amount over 55 years. I have named her Rosie (whole lotta...... you'll either get it or you won't!) The spruce is doing well. Strong. Resilient. Tenacious. Winning. Xxx

Looking Spruce!

The night before last I felt like I hardly slept. I woke up with the image of a photograph in my head and couldn't settle due to the urge to go and look for it. It's just as well I resisted the urge, because i found out the next day that it wasn't where I thought it was..... in fact it wasn't in my house, or even the country. My sister had it! So I'm glad I was able to relax my mind into knowing there was no need to get up in the middle of the night to look for something! I'm going to call that further progress!!

The photo was of me and my sister, with my mum. So I was under 5 years old in it. The photo I remember was of us walking down a forest path, with one of us on either side, holding her hand. What woke me was the image of the matching t-shirts my sister and I were wearing........ each with a cartoon tree on them and the words "I'm looking Spruce"! It struck me as funny, given all my talk of 'my' Sitka Spruce out at Downhill.

In reality, my memory of the photo wasn't quite right. I am actually wearing a t-shirt from a holiday in Tunisia and only my sister has the Spruce t-shirt. She says if she had it now, she'd give it to me, and I know beyond a shadow of a doubt that she would. I was a bit disappointed when I saw my lack of Spruce t-shirt...... it would've entertained me hugely to see me in it. 

It's incidences like this that make me curious..... In a similar way to my Wind in the Willows obsession, it feels a bit like old memories are coming back. Ones I didn't always realise I had. Spruce trees are somehow comforting due to childhood memories? 

This is when I start to get curious about the brain and how it works, including what has been done to mine...... I know the area where I had surgery is involved in forming new memories. I notice the effects. I'll remember someone I haven't seen in 20 years, but forget what I did this morning. Mostly it's funny and always manageable if I just concentrate..... if I'm carrying out a task I can't get distracted, or it won't get finished. But if I focus then it's grand. Some of the very old memories popping back in is the thing I find most interesting........ it almost feels like new memories are trying to hook onto old ones to ensure they're kept. And to provide comfort. Don't forget to go measure the tree..... 'I'm looking Spruce'. You're safe on the riverbank......childhood toy Moley........ 

I'm very curious about it, and I know I could find out more if I wanted (I've got the brain expert contacts now unfortunately!!) But no, I don't think I need to know anymore just yet. Maybe some time, but at the moment I think I'll content myself with knowing my tumour-damaged cells are healing. However they choose to do that is fine with me! 

Isn't the brain great?? Look at what it can do! I'm now frequently reminded. And I'm unashamedly impressed! Keep healing like this and by this time next year I could be a flippin brain surgeon!! Who'd have known so much was going on up there?? I hid it well....!

But thinking too much about it leads to more thinking too much about it........ that can become counter productive for me, as I can overthink and over analyse and sometimes catastrophise...... so I'll just stick with smiling at 'looking Spruce', measuring trees, relaxing, feeling safe and content, and using the remainder of my time off to enjoy the company of friends, old and new. The wide world will have me back soon enough...... xxx

Trees

It's funny how things become significant when you've had a life shock. You notice things you wouldn't otherwise have noticed. 

I can now totally understand why everyone's been banging on about this mindfulness stuff..... A friend and I used to have regular 'mindfulness days'. We just used to book a day off work and go for a walk somewhere. Just 'get the head showered'. Generally we tried to do it every few months, but sometimes things got busy and we left them a bit longer. Now I think we should've done one a week!! During these days out I saw wild dolphins off the coast twice..... the first time I grabbed a strangers arm and cried in excitement. I must be the only person who grew up on the north coast but waited so long to see them!! No, I'd never seen them in Portstewart before. No, I've no idea how I hadn't! 

 I've always loved nature and being outdoors, and never made enough time for it. I'd been better recently, with training for the West Highland Way taking me out walking every weekend. 

Now I just make a point of trying to get fresh air when I can, and I definitely feel the benefits from it. Trees have begun to hold something of a weird fascination...... I've no idea why! My Sitka Spruce at Downhill is getting measured on Sunday. 6m in 1962? How am I the only person in 55 years to wonder as to it's growth?? I'm sure someone has but just haven't shared it with the rest of us. Regardless, that Spruce represents strength and regeneration to me. 

In another wonderful little life quirk that keep getting thrown to me now, I discovered today that one of my medical support team is married to a tree surgeon who mentioned, as she called it, 'your tree', just the other day! Isn't it a wonderful world where the same, specific tree can come up in completely separate conversations twice??

In a final amusing twist, my son started university today and was put in the village where every Halls block is named after a tree! I'd love to say he's in the Sitka Spruce building.......... wouldn't that be just perfect?? There's no such building. Though there is a Willows Walk. More important than 'things I now notice and make me smile'...... he's in and settled. Pretty hard not to be extra proud of what he's achieved this year, given everything else that's been going on in the house. Proud mummy.

My point? Notice and take pleasure in the little things all around you. There's lots to see and much to make you smile. Xxx

Sonar......

One day, a few months ago,while sitting in a cafe near my home, I watched a man walking his dogs. He always uses a whistle with them. Curiously on this occasion I could hear the whistle...... I know, I know, so many jokes..... I asked my friend if he could hear it, but he couldn't. It amused me greatly at the time. Post surgery, could I now hear sounds inaudible to the human ear???

I'm starting to think I can not just hear them, but also emit them......... I know I've said before about feeling like a type of Midnight Bark goes round when I feel particularly unwell..... Thankfully it's not dogs that answer it........ Izzy isn't really talking to me anyway, having been banned from the bedroom. Sorry Izz, but I can't harp on about infection risks and then have a dog lying on the bed, much as I love you........... 

So my Midnight Bark seems to go around friends. Unrelated friends. Often people who don't know each other, so no conspiracy about an 'actual' bark. Which is why I joke about emitting a low pitched noise...... one that can only be picked up by sensitive friends........ It's always the same. I hit a wee dip and the phone lights up. 

The romantic in me wants to believe it's something to do with energies, and that people close to me  know I might need a wee pick me up. The harsh realist in me knows that good friends remember when I'm having chemo and also that when I'm getting a bit of a kemo kickin I am more active on social media; I blog more, I text more etc...... my low pitched whine is probably as simple as me constantly popping up with a virtual "hello. I'm over here. I'm a bit bored. Feeling a bit crappy over here." I feel a bit wick admitting that, because it looks a bit needy! 

In reality, I am not needy because I already have everything I could ever need. Family and friends few could ever hope for. With unimaginable patience and stamina. I'm very grateful to all my friends that pick up the emitted hum and check in. Sometimes a smart comment is really all I need anyway! And I have lots of friends who can deliver that....

Genuinely, in this instance, I feel crap. Like I have flu. Chemo is giving me its 'end of cycle punch'. But I'm grand. Emotionally good..... helped by virtual laughs with friends and a real world visit yesterday from a good friend I've known for decades. What could bring spirits up more than running home in a hail shower, relying on someone half your size to stop you falling over your own feet??! 

I may have accidentally emitted a low hum. I think I accidentally did a bit of a 'thumbs up on Mondays'  on a Thurs/Fri and thank you to everyone who checked their alarms and checked in to see how I'm getting on. Rest assured the network is intact and I'm safe and well, if a little tired and unwell feeling. 

I'm reading this back and hesitating about publication..... I'm worried it looks like an 'I'm fine. I'm fine' only shouted by people who aren't fine. I promise it's not. It's an admission that I'm not really fine, that I feel a bit physically crap, that I'm tired, but that I know I'll be back up by tomorrow. It's honesty. I'm publishing it for that reason. Honesty. By writing it I'm acknowledging to myself and others that I don't have to be up and laughing all the time to be ok. It's ok to rest a bit during the kicking. Adopt the foetal position for a little while. That's not defeat or weakness. That's protection. My sister will testify from childhood that you only hit me once before I get a hard jab in..... in fact it's unusual for me not to punch first....... not so true as an adult, but I don't think there's ever been any fear of my ability to take the punches.

Chemo cycle 2 ends tonight (definitely!) We're a third of the way through! Let's get this finished. Support Team, remain assembled, but at ease. Four more to go.  Xxx

Killing seagulls....!!

Is it just me or are the seagulls bigger this year?? And moving further inland?? I know it's not just me, because my hubby doesn't have brain holes and he has commented on their size and abundance..... I blame food bins. I thing a despise and am only using because I've had the Council warning sticker on my black bin..... I appreciate the need to reduce landfill and totally agree, but food bins are like having a compost heap in your utility room. They turn me. And I think they've brought the seagulls..... I'm miles from the sea, it's not natural to have a seagull the size of a kitten screetching at me from my rooftop! 

This morning I walked into our utility room to a smell...... a bad smell........ Not quite as bad as the morning after I put the dog to bed and shut the window, not realising the neighbours cat had hidden down the back of the fridge freezer, but a nasty smell all the same. And strong.  

A fact that could save your life some day.......... burning bakelite smells like fish. It can mean you've got a fuse burning and is hugely dangerous. I know this because once, many moons ago, it happened in my shower switch. Luckily we caught it and fixed it before our house was burnt to the ground. I was horribly smug about the whole affair afterwards....... using many opportunities to point out to my hubby how I had saved us. I guess we all do things like that....... get something right and feel a bit 'puffed up'. Now I spend more time just celebrating getting things right!! What does it matter anyway? So long as the house doesn't burn down. Anyway, I would imagine hubby did a happy dance today when I text him about the utility room smell and he was able to respond with "Someone put a tin of tuna in the recycle box"........ hhhmmm........ did 'someone'?? Someone who often eats lunch at home now?? He didn't have time to deal with it this morning so it's now on my list of things I need to do today...... I'm sure he'll never mention it again.......!

Also on my list was to ring the City Hospital. Another 'brain hole' moment. My chemo cycle runs from a Tues to the following Thurs. Three tablets a night. Last night I took my 3 pills and wondered why there were 6 tablets still left...... Clearly the best thing to do is always to be an ostrich...... that's what got me into this mess to begin with so it's a tried and tested method! A tremor down your arm? Worried you might have MS? Absolutely ignore that..... of course that's sensible. Life's busy, no time for doctors appointments and tests when you work so far away from home. Best forgotten and ignored. Right? Seems not! Anyway, back to my pills. The child in me is thinking 'if I ring them they'll make me take for an extra night'...... idiot! 

The reason I started about seagulls was because I had basically decided I'd take tonight's pills and then just throw away the 3 extra. Sure, it'll be grand..... Following the bin incident this morning, I started to think about where the tablets would go when I dumped them.  I know unused tablets should be taken to your pharmacy for safe destruction, but I can't take my chemo ones because clearly they're going to ask a few questions..... For some stupid reason I got an imagine of a seagull, sitting on a landfill site, eating my tablets and keeling over...... A ridiculous image, but it was just there. Now I'm many things, but I'm not a senseless seagull killer!!!

I knew exactly what I'd done with the tablets...... I started them on Wed night instead of Tues night. The analyst in me had even written on the box "start Wed PM"....... I just hadn't taken the tues night dose. I think I thought they'd given me them in hospital. 

You are an adult! Being unwell does not give you the excuse to behave like a child (any more so than you would've before...!) Stop misbehaving. 

Yes, I rang the hospital. No, I hadn't been given the first dose of those tablets when up there. Yes, I need to take the full course.

So chemo ends tomorrow night, not tonight. That's crap. But this is a long game we're playing here. A bit of misbehaving and being a little childish is fine....... it's the way I would've always been........ but if you're committing to something, then do it right. Don't just throw away the left over lego bits..... that's lazy....... and your Death Star might fall apart at a later date........ And don't kill seagulls! 

Chemo cycle 2 ends tomorrow night! Yay!! Xxx

Not quite.....

'Not quite what?', I hear you cry!! Shamefully..... not quite at the shop in my PJs..... 

I'm hoping today was chemo cycle two's sucker punch, and that tomorrow will bring a brighter me. I got up, I showered, I went for a short walk........ but I was exhausted. The  very odd duvet day is allowed, so I decided today would be mine. Snuggly PJs on and back into bed. Not completely vegging though...... I caught up on local news/politics programmes I'd recorded, like Spotlight etc (sad, I know...... but it's interesting!) and I made sure I got up to eat at regular times. 

When hubby got home I knew I should make the effort and go for another walk. I couldn't be bothered. If only I didn't have to get changed....... NO! There has to be a line. I am not going to the shop in my pyjamas. I wonder if....... I could put on joggies and my big coat...... nobody need know you're rocking a 'half jammies' look. 

I did it. I'm not proud of it. But I'm classing that as 'acceptable on very rare occasions'.  Disgracefully, it put me in mind of a New Years Eve when a neighbour called to the door to invite us in for a drink. I was  in PJs and a fluffy robe, having no plans. She persuaded me it didn't matter and to come on ahead anyway. I think we'd been sitting in their house  about 5 mins when I had that sudden realisation that I was sitting in my neighbours house in my PJs and a fluffy robe........ it was a bit like the naked dream (that I've never had, but is always referred to)........ What are you doing?? You lazy cow!! Have a bit of pride in yourself!!  Although that is probably slightly less shameful than a previous NYE when a neighbour (same house, different neighbour) helped us chase a mouse round our living room with a shoebox while dressed in nothing but his girlfriend's (way too short!) silk robe.......... I might be letting the side down, but at least hubby is maintaining the family's dignity! 

Again I'm reminded that not all that much has changed really...... Or that the clues were there a very, very long time ago........ whichever! I'll very happily go back to 'quirky' so long as there's nothing unwanted thinking it's the boss up there. It's not. Xxx

A mission.....

Chemo is tiring...... there's no doubt...... The initial increase in steroids leads to sleepless nights, on top of a heavy fatigue that's hard to shake. I'm a few days in now and feeling generally pretty bad, but not as bad as you might expect. Now I'm tired and I have a thumping headache.

Earlier I decided a walk in Downhill would be nice. We set off and happened to see the lady who often walks around where I live. It was raining so we stopped to offer her a lift, before inviting her to join us on our forest walk. A quick stop for a raincoat and we were on our way. So hubby and I had a lovely walk around the forest with a new friend, and I think we all benefitted from it. I showed her 'my tree'...... the fattest Sitka Spruce in Ireland and we laughed when I remembered I had written in my wee story that it'd take at least 3 people to circle it....... At least 3???? Easily half a  dozen!!! When I came home I looked it up out of interest, to see what width it actually is. I am horrified to see that the only information online about the tree dates back to the 1960s! In 1962 the girth was around 6m.

So now I have a mission........ to measure my tree!! I know what I'm doing next weekend.........!

Chemo musings

During chemo cycles i don't sleep well. I haven't decided if it's the chemo or the few days of increased steroids that are the issue....... Sometimes I'm convinced any side effects are entirely of my own creation, but it obviously doesn't feel that way at the time......

You know when you were a kid and you used to hold your tongue to the end of a battery, to feel the slight current?? Don't pretend you didn't...... we've all done it! It's like a dog owner pretending they've never tried a doggie choc drop...... I have friends who claim not to have done either at any stage in their life. You're either not being entirely honest, or your sense of curiosity and imagination needs adjusted! 

My sense of curiosity has never really been in question, and my imagination seems only enhanced by the 'surgical cavities'. So last night when I took my three chemo tablets, a tablet so toxic that you can't hold it in your hand before taking it, and have to wash your hands before and after being near, my imagination (I assume) got to work. I really have no idea which bits are actual effects and which bits I create mentally. I don't think it matters...... it's all from the one body and it feels very real at the time. I think the trick is to take the dose and then go to sleep fairly quickly. I misjudged last night...... somehow deciding it was better to let my body start to digest them before I lay down. I can only describe it as feeling like someone had stuck a cattle prod down my throat and was blasting right down my throat, down my oesophagus, into my lungs and heart, and through my bloodstream....... yikes........ not pleasant. Panic inducing. But deep down I knew this was probably not totally real, and definitely there was absolutely nothing I could do. So I worked on the only thing I can control..... my anxiety levels. Deep breathing, calm thoughts, releasing tensions. I must've learnt something as I fell back to sleep! Not for long, but an achievement all the same. Today I have functioned, albeit slowly, and generally feel no worse than I have done for ages. So doing ok really. Not a day of high activity, but not s day in bed either. I'm wearing jeans, I'm showered, I've even been out for lunch!

Interestingly I had yet another moment of creativity during the electrical surge...... the last time I wrote I think I said something about bees and wasps?...... if I didn't write it, I thought it!  Anyway, so here's how it came to me last night.......

Have you ever seen programmes about cuckoo wasps? They infiltrate other nests/hives and lay their own eggs. Their larvae then eat the existing ones. 

That's how I see what happened to me........ cuckoo wasps got into my honey bee hive. They infiltrated extensively. My surgeon sprayed the hive with chemicals and then cut out as much of the infiltrated bit as she could. With the radiotherapy, 'burn back' was continued. Chemo is the final chemical spray. Unfortunately each treatment kills more honey bees, but they'd have been killed by the wasps anyway. The wasps are very susceptible to the chemicals and therefore more likely to die. The honey bee larvae may survive and will hopefully then recover and grow up to completely recreate the hive, producing honey and working together to ensure my whole body thrives and strengthens. Sometimes the wasps sting as they die. They fight, but it's a pointless struggle for them. I can't do too much to protect the honey bee larvae or ensure they grow into honey bees...... I just have to trust their strength and ability. I'll nurture them with a bit of strength testing alongside feeding them nutrients. And then we'll keep an eye of any remaining wasps, hoping they admit defeat and shrivel up. The hive will always be vulnerable to further attack, but we'll all work hard to ensure they don't get in or are stopped in their tracks early. Maybe the wasps will decide this hive isn't worth the hassle.

These are the thoughts of an exhausted person on too many steroids, and with too much imagination, at 4am........ Tonight I will get my head 'unbuzzed' early. I will read my book about trees (The Hidden Life of Trees....I've read very little of it so far but  am already completely enchanted!!), lament (yet be happy for) the fact that hubby and son are away to see Ryan Adams at the Ulster Hall, and then I will go to sleep early. A feat I feel well able of achieving tonight! 

Xxx

The little engine that could

Finally! On the fourth attempt, my bloods behaved and I started chemo cycle 2 last night. Seems a strange thing to be celebrating but, as Tom Petty knows, 'the waiting is the hardest part'. 

Most of us are far more resilient than we ever thought, but it's not often it's truly tested. Waiting for a friend who's always late is not testing your resilience.......... waiting a month to get a horrible treatment started, knowing it puts you further down the path to finishing the horrible treatments....... that's testing your resilience. Thankfully the resilience held, and I'm back on track. 

I have been warned that this will probably happen again. Treatment will be delayed. Doses may be adjusted, timescales may change. I doubt it'll ever be as stressful again though.  I'll now go into each treatment period with no expectations. No gung ho, 'bring it on'...... more of a 'hopefully. Well see'. 

I was always big on structure. Routine. It's really hard to let go of that when it's how you've always lived. I like clear instructions and set timescales. Doesn't work like that now girl........ Learn to go with the flow, or prepare to be caught in the riptide..... So I'm continuing to learn. I can look after myself in terms of food and exercise, I do what I'm told with the medications, but other than that it's not in my control. I can't change my blood counts, but I can ensure I don't have (or just manage!) a small meltdown every time there's a hitch. I would love to have set dates for chemo. I'd love to know the date of my final cycle and have something special planned.

Instead I'm learning how to not worry about definite dates and how to ask for help...... which most are always willing to give...... nurses who'll get bloods to labs early so results can be relayed quickly to ensure no wasted flights for my sister, receptionists who'll check about moving scan times so it saves two journeys. These are the small but massive things. The things that can make or break your days. Just people listening, understanding, and making a bit of extra effort. I think I was like that in my job, and I'll certainly make sure I am when I get back! 

My nice, new PICC line has received much nurse adoration! It seems it was beautifully fitted, and I will be sure to beautifully maintain it along with my District Nurse. At the risk of scudding....... it has been so much easier so far. Bloods are taken in seconds, chemo given, and it can even be used for dye for future scans. Removes what had become the agony of vein finding...... No more Gone Digging! Dug once, really deep, put a flag in the hole! An ace up my sleeve! An almost guaranteed good hand dealt every time .

Scan results were as underwhelming as I'd been told they would be. They show what has been done to me. A line in the sand for future scans..... it's not active, it's just getting treated. I'd imagine the most difficult thing for the medical experts is that they don't know what it looked like before it went mental! We only know what it looked like when very angry and having given me a seizure, but had been settled with medication....... So I guess it's difficult at this stage to do anything but measure if treatment is doing what's expected; which it is. We knew from the first day that it wasn't going away completely. I still can't really believe that, but I know it's the facts. The aim was always to get it under control, the way it was before it got angry. Burn back. As far back to the start as possible. Long term maintenance....... hopefully years, perhaps decades. Prognosis remains the same...... no timescales, no reason my life can't go back to normal (although I don't think 'normal' will ever look quite the same for any of us!)  

So the scan shows radiotherapy swelling and...... wait for it.......here's a phrase you'll never forget........ surgical cavities. Surgical cavities???? There's a phrase and a half.....!! A properly empty head!! Essentially brain holes...... but on this ocassion brain holes are better than tumour, so I'll take the empty head, thanks. Now we get to see the brain holes get filled with newly grown brain! I could end up with so much brain, I'll be like Einstein!! The more good cells get in there, the less room there is for the bad cells. The bad cells are already hopefully struggling with the chemo....... I'm almost excited about the next scan....... it's like watching an epic battle. My imagination conjures up the final scenes of the Harry Potter films....... battle has commenced, and hopefully the self destruction by obliteration will continue! 

I did ask about whether the treatment would just make it angry, like we'd poked a wasps' nest and it'd come back twice as angry..... but was thankfully reassured that's not how it works. Hopefully we didn't poke the nest, we used a great big flame thrower on it and hopefully its shrivelling up and shrinks a  bit more every day. In the meantime a lovely, happy queen honey bee is eyeing up a potential new home for its hive of good cells, and there's plenty of cavities for her to choose from!!

"I write because I don't know what I think until I read what I say"

Flannery O'Connor

What a quote! Xxx