Try, try, try.......

Try, try, try again.....

Yesterday I woke up nervous. Third attempt at my second chemo cycle. I had been confident at the end of last week. Sure I'd beaten my viral infection, and ready for the next step forward. On Friday I even thought it'd be funny to try and guess what my platelets and neutrophils levels were.......... Never do this. You will get it wrong. I completely underestimated my platelets...... they were a huge amount higher than I expected. Good news! Unfortunately, neutrophils......... (normal levels between 1.8 and 8, need to be 1.5 for treatment, had been 1.3 last week), I had estimated 1.8, so a big disappointment to be told they were down to 1.1. I don't like to read up too much as Dr Google will rarely bring you glad tidings, however my understanding is that  I am at high risk of infection and my body has no ability to fight it.  No chemo........ again....... That's the third attempt at cycle 2. The third everyone has geared themselves up. The third time my sister has flown over from Manchester to take me up. The first week I was told 'no' I was hugely upset. Devastated. Last week I felt nothing but relief. This week I'm just a bit of a combination. I don't want to do it, but I'd rather get it over with if I have to. I feel guilty and probably a bit weak. I was pissed off. I guess I still am the next day. It feels unfair. Guess what?? Cancer is unfair. It sucks. It's hard work. 'The journey' is rarely a nice manicured path. It'll be  more likely to be a twisty, confusing path, littered with rocks. Of course there are times when I question my treatment decisions, but I said I would trust the experts and I still maintain that's the right thing to do. Apparently chemo doses often need adjusted and in a fit of spitefulness I told my sister "Glad the first chemo 'tells us so much'. Oh aye, a bit too much poison there. Glad we didn't kill you by mistake. Maybe you're not as strong as we thought. We'll maybe drop your dose a bit next time.", to which my poor sister pointed out "Or we can tailor make the dose to suit you and your requirements." A fair point. There's not much in life that's an exact science. 

As usual, I've just written a ridiculously huge amount when I could've just said My chemo didn't go ahead again yesterday. As always, it helps me work through it all when I write it down. You didn't have to read it...!! 

So chemo didn't go ahead for the third week in a row. As ever, part of me just wants to get on with it and get it done, another part of me feels nothing but relief.  I didn't sleep well last night but the reality is that it was very far from a wasted day yesterday. 

I had a scan. They've tried to lower expectations around it...... it's just a line in the sand for us, it won't tell us a huge amount more, don't expect massive revelations from it. I'm not unrealistic, but I am simply not allowing the "it might be gone!" voice to disappear completely.  I'm not expecting to be told that, but I refuse to lose hope either..... 

If nothing else, my sister and I met a lovely lady while waiting. A nurse who was waiting for her son. Just a warm soul. We enjoyed a really nice conversation and I think gave each other a wee boost.

Then I met friends! As always!! One a friend made through going to radio. A hospital staff member who had told me about a meditation app (Calm - definitely recommend!) She didn't look after me, we just met in the foyer one day. She helped me hugely at a time when I was struggling. I bought her a book to say thanks. Just a bit of kindness shown to each other, taking minimal time and energy, but having huge impacts. Another shining star along the road.

Then I got to catch up with my ward buddy and her mum. What could be better?? And she came with a bag of gifts and a card that melted my heart! For no reason, other than just to be nice. It was so great to see them. To be reminded I've got a partner in crime. We stay strong for each other. During our chat another staff member came and joined in. Someone who had helped both of us during radio. It's all about the people.

I also had my PICC line fitted.  My tap. It can be used to take blood, to put dye in for scans and for giving me the IV bit of my chemo. It's in the top of my right arm. A little uncomfortable, but not too bad. I'm just not thinking about the 38cm of cable tubing that's now in my body and sticking into a large vein in my chest. It's 100 times better than playing Gone Digging every week. I'll get used to the feeling of it being there, and will no doubt be very grateful for it at a number of points in the future. 

And finally........ weight loss....... When doing radio I gained half a stone. I was never worried by that. I have bigger fish to fry. Then I lost it. And kept losing it. Someone once asked me if I was losing it deliberately....... basically asking if I was on a diet following a bit of weight gain during radio. I believe my response was 'Erm, no, that'd be a bit stupid, wouldn't it??' This person clearly didn't know me at all....... What sort of idiot would diet during cancer treatment??? I have my priorities absolutely clear....... to get better. I don't care if the front of my hair looks like fuzzy felt or if I gain a few pounds! All reparable in future. So no, I didn't diet. But I did become a bit scared of food...... when you're given a list of foods you can't eat that includes yeast extract (what even is that???) and meat extract (no stock, gravy etc) and cheeses, it can be incredibly difficult to figure out what's ok to eat. Then it becomes a 'thing' and before you know it you feel like you're force feeding yourself and just stop enjoying food. However, I don't need a doctor to tell me what's a healthy weight. No woman wants to gain weight, but I also know that at 5 foot 7 my weight in stone shouldn't start with an 8. I also don't want size 8 clothes 'sagging at the arse'!!  So, on strict instruction of a dietitian, I'm bulking up. As she pointed out, a weak body will just not be able to cope with chemo. I don't want supplement drinks. Like an antidepressant they won't cure the issue....... I'll take them if I have to, but let's try feeding my face first?! Unlike Frampton, I won't miss my weight (although I seem to remember he was over, which would be fine for me!)......Every meal must have two courses, reintroduction of carbs, sugars, fats. Hubby is ecstatic!!! 

So what's the plan?? Well today I'm staying in bed. I'm exhausted from all the stress of yesterday, I didn't sleep well last night, I've got a headache and I'm scunnered. That's allowed for one day. Tomorrow I'm up and giving myself a kick. Hubby is off all week and it's nearly gone already. We have plans for a great walk tomorrow. I'm looking forward to it. I really can't go into public at the moment due to the infection risks (anyone calling is going to end up get hosed down at the door!), but I need to be outside and get myself built up physically as well as mentally. Getting 'tour fit' yet again. Weight up, muscles built up a bit, spirits high. I've less than a week before I ride into battle again. The sooner I get this crap done, the sooner it's ended. I'm trying to rewind a bit to before surgeries..... and then before radio.......Help myself. Good food (and plenty of it!), exercise, mental strength from relaxation, strong friendships and good night's' sleep. 

Results and plans for the future can stay there..... in the future. I'm strictly on a 'take each day' diet. Xxx

Alternative Ulster

Last night Stiff Little Fingers played Belfast, along with a number of other punk bands. During the Troubles, Belfast was renowned for a music culture that crossed boundaries and flew in the face of the sectarianism and hatred so evident in other areas. The punk scene is known to be a big part of this, with Stiff Little Fingers right at the heart of it. If you want a real lesson in it then watch the film about Terri Hooley, Good Vibrations. Or just google it...... there's any amount of articles and books on the subject. 

My point?? SLF have a very well known song called Alternative Ulster. It's basically about changing where you live. Taking control of your own destiny. To me it wasn't written about rising up against authority as such, it was about making a difference where you could. Not getting involved with the sectarian battles, just focussing on music and the mates you've made through that. Religion and politics didn't matter, as long as you all loved music. Jake Burns may correct me.... but I don't think it's really an anti authority song. 

I grew up (and still am!) a rocker. The concept is exactly the same. I wouldn't have known the religion of half my friends growing up, despite being forced into boxes at every opportunity, most notably through what school we attended. I'm somewhat pleased to have passed this disregard for boxes on to my son. When filling out the religion section in a form, he states 'neither'. I spoke to him about it at one stage and he told me he'd never been raised one way or the other, that he'd never been christened, that we didn't go to church, and that he didn't feel more associated with Protestism or Catholicism. He is also 'Northern Irish', because there some things that make him feel Irish and some that make him feel British. There's hope for our future!!! As a funny aside (although this whole blog entry feels like a funny aside...!) I feel so strongly about the Northern Irish thing that I put it on my census form....... a source of great and never ending amusement in our house. I'm Scottish. Duh.

Flip me, Sunday morning musings........ There's a point here somewhere, honest.......

Sometimes I feel like I've been thrown into a bit of an alternative universe........ one where people I didn't expect are pogo-ing at punk shows while I'm tucked up in bed, reading Pride and Prejudice. Sometimes it can feel a little odd, and even upsetting. Last night, as my husband and son, along with so many other friends, were up seeing SLF and having a great time, I initially felt a bit sad. Lonely. Like life was going on all around me but I wasn't able to join in. 

As the evening wore on though, I remembered that I had chosen not to go to the gig. I enjoyed seeing my boys and friends have fun. That's what life's about. I looked forward to getting back out there next year. I am not bedridden. I am not so ill that I can't leave the house. I chose not to go out because I'm trying to get myself fit for Tuesday. That's not boring or weak...... that's harder than any punk band! They'd be terrified to pogo anywhere near me....... because they know I'm tough as old boots! 

The audience might've been jumping around shouting about changing their native land, but how many of them are actually doing it? All of us undergoing cancer treatment are taking control of our destinies....... as much as we can.  We're saying what's going on is not the life we choose.  We're saying "Punch me again. I can take it!" We're walking home. It's a long and arduous road, but we're walking it.

I should probably leave Sunday mornings for reading the papers........ 

Life has changed. Sometimes that feels weird and sometimes I grieve a little for my old life. Then I remember how fortunate I am, and all the wonderful things that have happened to me as a result of my illness. I might not have been jumping around to SLF last night, but this morning I got two hugs from staff members at a shop near my home. One from a girl who is soon to undergo 'a tiny bit of heart surgery' and another from a girl who had a brain tumour removed last year (thankfully benign, but I'm sure she's not a day over 23, and I'd imagine the terror is no different to what any of us feel). Two people I knew before my diagnosis, but only in very remote ways. A quick hello, maybe a comment on the weather. Now we hug and encourage each other. They tell me I look amazing, and how strong I am. Sharing positivity and offering genuine help should the other need it. Sunday morning love from people not obligated to give it. Spirit lifting.

I was also sent a video about the Japanese art of 'forest bathing'. Where you literally go into forests and drink up the health benefits. It has been scientifically proven to improve health. Shinrin-yoku. I have been practicing it without even realising and can attest to its relaxation benefits. Hopefully the physical health benefits will follow. The video was sent to me by another person it's unlikely I'd know if not for being unwell. Yet another warm spirit.Amongst the  network of lovely people I've been given access to now because my mind is open to seeing them.  I will use the opportunity to plug a charity I know she helps....... Rosie's Trust. They offer a dog walking service for cancer patients who become unable to do it themselves. A wonderful idea, as I'm sure many older patients find themselves in that position, but their dogs may be their company and hugely important to their mental wellbeing. My dog, Izz, is merely taking full advantage of having someone at home much of the time....... she has become a complete diva like her owner!! Thankfully we've no problems with the walking, but I can imagine if you lived alone and perhaps were older that it could become an issue. Rosie's Trust. A bit of an alternative charity to the usual services offered I thought, but could be equally as important to someone's wellbeing.

And finally...... maybe..... hopefully...... my point is made....... It's ok to be a bit alternative. Go hug a tree, pogo to a punk band, hug people, do something to help someone that doesn't fit into the traditional categories....... Alternative is good! Xxx

33,000

I can't find anything interesting that involves the number 33,000...... I was hoping it would be something cool, like 'the number of honey bees in a hive' (20,000-80,000) or something..... couldn't find anything...... apart from something about gun deaths in America that didn't really fit with the general (I hope) positive vibe of the blog. So I had to stick with my reason for mentioning the number, and forget any fancy factoids! 

As of today, 33,000 is the number of hits I've had on this blog! That's nothing short of crazy to me! It's been running 26 weeks and that's not unique hits, but even still....

The Analyst in me feels it necessary to provide a bit more information.....

Number of posts - 142 (average of 4/ week. I have a lot to say.........)

Blog hits - 33,000

Average views per week - 1,269

Average views per day - 181

Top 3 most popular posts-

I Made you a promise

Who am I?

Finally I sleep

This is staggering! Even if the same 100 people looked at it every day faithfully, the number of hits would be close to half what it actually is. I don't believe I know 200 people........ certainly not that would interested in this....! 

Part of me is mortified as ever...... I have shown my soul in this blog. From day one it's been like thinking out loud. My way of releasing my thoughts and feelings. Partially my way of coping. I still find it hugely surprising that I chose to do that publically..... and really don't know why I did. I always hoped it might help others in some way, and I have had some people talk to me about it, that have made me feel like maybe, just maybe...... I wasn't the only one who's felt particular ways at difficult times in life. I know I've made a few people laugh (granted often close friends!), but it can only be healthy when you're typing something and making yourself laugh too!....... Probably the height of arrogance to be laughing at your own jokes, but I was laughing at the re-telling of some really funny stuff, rather than at my comedic ability! Sometimes things happen that are just funny! I hope, as well, that the stories of how decent and good people generally are, brings a smile to the odd face. Again, the act of writing it down has been a joyful experience for me, at a time when it can sometimes be hard to remember you're surrounding by genuine love. 

I love writing about an act of kindness or a funny thing that has happened. Unfortunately there's also a necessity for crap bits too....... medical updates etc. The dull bits. But really the dull bits are what started this....... the provision of medical updates to the large number of wonderful family and friends that genuinely care. If I had to guess how many of those people there are who faithfully read the blog daily, I'd generously estimate it at about 30. That leaves 151 people every day. Some will be just plain nosy..... although committedly so, it seems! Some just curious. But if I were getting just 5 people every day, reading because they've felt the same. Be it in terms of the emotional journey that serious illness brings or understanding and controlling anxiety (whatever the cause), then I'd be achieving a huge amount and I'd be very happy with that. In fact, I'd be happy with one...... ever!

This sounds like a last update but it's not! I'm competitive...... 50,000 seems reasonable? I've still months of chemo and lots to say...... which neartly segways into today's update...

No chemo again today. Sis and I went up to Belfast and the hope was my bloods would be ok and I'd get my PICC line in and start cycle 2. I was sceptical. I haven't been well for the last week or so. I've been fighting it, but am on antibiotics again. Ear/throat/murderous headaches..... sinuses if I had to guess........... I had two sea walks over the weekend as the salt air often helps. Truth is I feel pretty bad. Nothing awful........ unlikely to have kept me off work, but might've sent me home early...... I was trying to be positive and convince my body it was fine, but I knew I felt worse than I did last week. Unfortunately I'd read this one right. No chemo today. This time platelets were ok, but nutrafills were 0.2 lower that the cutoff point. Last week when I was told no chemo, I cried my eyes out. Then went to keep fit class. This week I breathed a massive sigh of relief! I feel a bit annoyed with myself for being quite so relieved...... but I knew I wasn't fit for it. It's so tempting to always want things to move. To keep taking the punches, because you want it over with. Sometimes your body just says no. That's why your bloods are checked and there are strict parameters. I was never naturally great at rolling with the punches, but I'm learning the art....... I suspect this is how cancer treatment often  is...... you've got to learn to be flexible. The hardest bit for me is dragging my sister over from Manchester. She'd never say, but I know how inconvenient it can be. I have other people who would take me up, but your sister is your sister....... She has a way with her. There are skills needed!! Organisational (get us there on time, sure to keep notes, query things) and emotional (keep me calm, comfort during times of physical pain that usually involve a needle!). Plus she's pretty much always calm, unpressured and unhurried.

I'm not hugely unwell, but I could've been if they'd started me on chemo today. So I'll spend the week resting, getting rid of whatever minor ailment has come my way and keeping active in a gentle way. 

And eating. I remember joking that I must be the only cancer patient to gain half a stone. What goes up, must come down....... a full stone off in 7 weeks....... So this week if you see me without a food item in my hand then stick one in it please!! 

Next week we try again. I'm confident by then I'll be ready. Handily, hubby had booked next week off. We had some plans to do fun stuff...... but now he gets to look after me! That's a huge comfort to me to have him off when I'll be feeling at my worst, so I'm not mucking it up! Cycle 2 will start on Tuesday if I have to start stealing good bloods!!  Xxx

If at first you don't succeed.....

"If at first you don't succeed, try, try, try again" 

usually attributed to Robert the Bruce. 

Though I've heard many different stories about who said it, when..... I think we're all agreed it was a Scotsman. As a Glaswegian, living on the North Coast of Northern Ireland, I like the story that it was said by Bonnie Prince Charlie while watching a spider trying to spin a web in a cave on Rathlin Island.

On Monday we try, try, try again. Up to the Big Smoke for bloods to be checked and chemo to be given if possible. Cancer treatment is teaching me a level of calm and flexibility I never thought possible! Thankfully my sister is the most laid back person on earth and takes everything in her stride; greatly helping me to do the same. If it's meant to be......

So I've got until Monday to sort (as my friend calls them) these pesky platelets! I'm still feeling unwell from the throat infection I'm carrying, so have decided on a weekend of rest and relaxation. A bit of a shame, as I had two different opportunities to do fun stuff tomorrow night. In discussion with hubby, we've agreed that pushing yourself is fine but not too hard. So no concerts or visits to beautiful gardens for me this weekend. Just gentle walks, meditation, bed, books and films. Just for a couple of days. Then up on Monday, hopefully with tip top platelets, and throat infection free! To get stuck into cycle 2. To get it over with. To let us all move on. 

Brain tumours are really very 'last year' now. Boring. I'd imagine all the family and friends who've stuck by my side are finding it all somewhat tedious now! Thank God for their ongoing patience!

As I hope for chemo to go ahead, I find myself becoming increasingly like Lady Macbeth (without the murder and guilt!)......... "Out damn spot", I imagine myself saying as I wash and sanitise my hands for the fourth  time in an hour..... There is hand sanitiser on a table at the front door and in strategic positions around the house....... I swear I see germs everywhere, picturing those old TV adverts that warn of how easy it is to spread bacteria. I even said the other day "catch it, bin it, kill it" after my poor husband (who has hay fever) dared to sneeze near me! My boys are quizzed about their hygiene regularly, and I can even now confirm that hazmat suits can be purchased on EBay........ Don't panic!! I looked it up as a joke........honest......... I'm exceptionally and rightly cautious, but I'm not at the Channel 4 documentary stage yet!

So let's see what Monday brings. If we're lucky, I'll be a third of the way through this bit in a couple of weeks time. If not, we'll just go back to the cave on Rathlin. Xxx

Good times!

In amongst the crap, there are so many good times! The past couple of weeks have been a bit up and down for a variety of reasons. None of them particularly major in the bigger scheme, but each one just placing a slightly heavier weight onto the shoulders. I'd been getting through each one fine, but anxiety levels were definitely raised a bit and it was taking genuine effort to keep everything level. I booked a wee emergency Reiki session in, just to give me a bit of help.

This morning I woke up really early, very shaky and heart thumping. I've woken up like that all week. It's been ages since I've felt like that so consistently. I've been managing it, but it's horrible. 

After my chemo setback on Tuesday I'd visited my doctor yesterday to get my mouth and throat checked (keep having problems with them), and to check about what all the blood test results actually mean. He was brilliant. Talking me through each one and providing some explanation and reassurance. I've been put on antibiotics again for my throat. It'll be good to get that shifted as it's making the back of my tongue and throat feel swollen....... uncomfortable and definitely not nice for someone who spent some of the early time in hospital convinced they were going have a seizure and choke on their own tongue..... (not possible apparently, but try telling that to a very scared girl). Anyway, as I was leaving the surgery I had one of my normal fortuitous turn of events, when I met a former work colleague who lives near me. Handy as I was about to book a taxi. He even stopped to get my prescription on the way! Good people all around.....

I felt pretty bad this morning. Truthfully I've been really fighting that throat infection, not letting myself admit I was feeling poorly. Having it confirmed I think allowed me to stop fighting it a bit and I decided it was acceptable to have a quiet day. But first.......... A-Level results! My son was due his so we were all up and ready for the big news. Maybe I just wasn't meant to do chemo this week, because if I had I wouldn't have been able to jump round the bedroom with my husband and son, crying and shouting for joy! Excellent results and into the course he wanted to study at Queens University. Happy, happy, happy!!

Next! Reiki. Although my spirits were high walking in, I was still feeling a bit poorly and was tired from all the whooping that had been done earlier!! As ever, my beautiful therapist got me completely calm and completely levelled out. As I was waiting for my taxi she asked me of my plans for the day. Shamelessly I admitted I was going to lie down to things a bit today and was going to get back into my jammies. Both her and another of her clients smilingly pointed out it was a beautiful day and I should consider making the most of it. This plan developed into a quite wonderful one whereby I would ask the taxi driver collecting me to take me for a cuppa in a lovely cafe near the beach, wait for me and bring me home! I gave my dad a quick call first, just in case he wanted to join me, but he was in the middle of his apartment block's residents group meeting (which I always imagine to be like the town meetings in The Vicar of Dibley!) 

"Here, this will probably sound a bit mad, but I've just been persuaded it'd be a great idea to head out to a cafe {quite far away} before going home. You up for it?? You'd have to wait for me. Tell you what, I'll even buy you a coffee. It'll be fun!" He was up for it but his controller was a cross lady who was shouting about cars' tanks not being filled by drivers. As I realised there was no way she'd agree (driver was equally cynical), I also remembered I had a tablet to take about 20 mins later.  Nah, best take me home.

Grand until I got home and realised how utterly boring I was being! I was so disappointed in myself. Had I learnt nothing? Grab life!! Hubby was at work and my son was off with his mates, though it's less fun when it doesn't feel a bit irresponsible anyway........ So I put out the call. Just to a couple of friends I felt I might just be able to persuade to get into a tiny bit of mischief on a sunny day! Whilst two felt the pull, one let it drag her in........

"The mole had been working very hard all the morning, spring cleaning his little home. First with brooms, then with dusters, then on ladders and steps and chairs, with a brush and a pail of whitewash...... It was small wonder, then, that he suddenly flung down his brush on the floor, said 'Bother!' and 'oh blow!' and also 'hang spring cleaning!' and bolted out of the house without even waiting to put on his coat".......(another one from Wind in the Willows by Kenneth Grahame)

And so my wonderful friend appeared! Having abandoned what she was doing and apologising for her clothing (looked fine to me but seems they were 'cleaning clothes') And off we went, adventuring. We drove out to the fabulous cafe that had been recommended, The Bothy overlooking White Park Bay. I appreciate that eating broccoli soup perhaps doesn't seem like the biggest rebellion in the world....... but it was the spontaneous act of just roping someone in and doing our own thing. An afternoon spent in good company, not thinking about much else at all, just the good time we were having. I didn't look at my watch once and the only phone contact I made was with hubby (just to be sure search party wasn't sent out). 

I know I have a million, sickening, positives that I keep harping on about, but.......... another good thing to have come out of a terrible time, is that you should DO more! Don't always be shackled by the 9-5. Yes, we need to work and bills need paid. If you're lucky you'll get a job that you love, like I have. It doesn't mean you can't be a bit irresponsible sometimes. Not quite the literally genius that Kenneth Grahame was (and it's probably sacrilege to have their names in the same paragraph), but as Sebastian Bach (formerly of rock band Skid Row) told us;

"Can't be king of the world if you're slave to the grind"

As a note of caution, he also said;

"Shake, shake, shake it like a rattlesnake
Boom, boom baby out go the lights
Shake, shake, shake it like a rattlesnake
Staying up late doing the rattlesnake shake"

So you don't always need to take him too literally....... Regardless, I think the message is clear........ live a bit! Sometimes it's ok to just grab a friend and say "Come on!" And yet again I'm reminded of my Support Network and the family and friends that have held me up from day one. What a wonderful day! Xxx

Kickin.......

As my sister walked into my house this morning, I was delighted as ever. That wee happy face! Selflessly bouncing back and forth from Manchester as needed. We had a quick catch up and then I was packing up my wee rucksack for my day up in Belfast to start chemo cycle 2.  Like a schoolgirl off to behave herself and sit at peace.

"I have a note in my diary to just ring the hospital and check everything before we set off...." and so I lifted the phone........ to be told my platelets are too low for another chemo cycle just yet. Although I fully understand it's not anyone's fault, it was like getting a kicking. I was ready. Mentally and physically. This was another bit dealt with. I had made plans around the cycle dates. I was looking forward to stuff. Not starting today messes everything up. Tears? Yes.... one or two. Quite a few really. It felt unfair. In a childish way I guess sometimes I feel like I'm doing everything I'm being told to do, but then every so often the goal posts get moved. I'd expect that's how most people going through cancer treatment, or living with cancer, feel. It's always changing. Things are fluid. It's easy to say you're fine with that, but the reality is that we all get unsettled by change, especially when it's constant and unpredictable. So I had a good cry. I despaired of the unfairness of it all. I thought about all the things I'd planned that now couldn't happen. 

And then I realised that I could cry all I wanted. It wasn't going to change my platelet levels! I do find it slightly amusing that no-one can get blood out of me, yet I can't have chemo because if I were to cut myself now it wouldn't stop bleeding........ irony. So, I started to pick up the fight again. I meditated, just to get me breathing and take the edge off. Then I had an idea. Tuesday morning is my Cancer Keep Fit class........nothing to stop me going now. I grabbed sis (who never needs much persuading anyway!) and told her "You know what we're going to do now?? We're going to Cancer Keep Fit class. And then we're going out for lunch. After that I need to call into the doctors to make an appointment about my sore mouth, and to arrange for a wee game of Gone Digging on Monday again. (I have requested 'my bloods guy' and will plague a few times before Monday).  After that there's a few things I need at Sainsbury's." 

And off we set. Leaving the riverbank and heading into the Wild Wood....... we went to keep fit and laughed with fellow warriors. Then we went for lunch. I chose a place I haven't been in ages. I used to regularly visit with my dad when I was working locally. Having moved to Belfast, I haven't had much opportunity to visit of late. I went in and the owners asked how I was doing. The headband always gives me away so I tend to just blurt it out. Imagine my surprise when they told me their mother was battling a brain tumour? A bit different from mine and different treatment plan, but six years later this warrior, who is significantly older than me, is still around. A positive family. So much so that our drinks (of water) were brought down with straws in them so we could 'pretend they're cocktails and you're [we're] on a beach somewhere!" Such a sweet gesture that it brought a tear to my eye. Yet another lovely person who I've either met along the way, or seen in a different light. 

So tonight I am relaxing. Enjoying the time I still get with my big sis. Pulling out the positives..... most of all just 'calming my jets'! I can't change this. There's nothing I can do at all. I can stress out about it and make myself feel awful. Or I can accept that these setbacks come. I can remind myself nothing has really changed...... I just get to delay feeling like complete crap for at least another week. Dead on. I'll make the most of this week then. Enjoy the fact that I've an unexpected, extra week of feeling a bit better. Son gets A-Level results on Thursday, so it'll be nice to hear them and be able to stay awake to talk to him! 

Meant to be. I'm not totally cool about it, of course I'm not. It's upset me, but I'm ok. My body isn't ready for cycle 2. In the bigger scheme it's a week or two. And isn't it better for them to be cautious, rather than battering on and having me bleed like a stuck pig from a paper cut?? Xxx

Let's do it.....

Chemo cycle 2 starts tomorrow. 10 days and then I'll be a third of the way through this bit...... time flies when you're fighting a brain tumour huh?!

I had to get bloods taken this morning. I've become strict about this, after realising how many Gone Digging players there are out there...... I have my guy. He does it. Hopefully it should've been the last time today as I'm due to get a PICC line fitted tomorrow..... a tap of sorts. 

I was nervous waiting for my guy this morning. Although I had checked and double checked and felt confident in the most recent person I'd spoken to, I also know how easy it is for things not to be joined up. 

We get up at 6.15am, so it felt like a lifetime until there came a knock at the door. I'd been out for my morning walk, had meditated, read for a bit..... it wasn't very long, but I was slowly building myself up inside. What if he doesn't turn up??what if he can't get a vein and stops being my guy?? Knock, knock, knock. Ah, thank god! But wait, hold on..... who is this female nurse?? You're not my guy. I'm a little ashamed to say I let her stand on my doorstep as I eyed her, deciding what to do next..... I told her i was expecting someone else and she politely explained he was off. Off?? OFF???? No, I whined inside, I need him.

Think, think, think. Logically, refusing her entry made no sense. The bloods need taken today. If not, my chemo schedule would be knocked off. Diva or zen?? Why zen of course!! Please come in. No talk of bad veins, don't make the poor girl nervous. The crappiness of the hand she was dealt was spotted straight away, but she didn't fuss. Just commented my veins were bad. I told her I had confidence in her and I knew she was going to get it first time. In reality I was spiralling into an internal panic, but I did a bit of deep breathing and told myself a couple of bad experiences doesn't suddenly mean you'll never meet another nurse who can take blood! In fact I've met quite a lot who can. 

This poor nurse was only covering staff shortage had clearly been given a really bum deal! I was literally willing her to get it. GO DIG!! I'll deal you as good a hand as I possibly can, I promise! I've been wrapped up all morning and have drunk more water than a camel who's just stumbled across an oasis in the Sahara....... GO. DIG. Boom!! Not quite a royal flush, but certainly a winning hand that included face cards. Quick, fuss free, done. She took my little vial and headed off...... likely to visit some cantankerous old cow that throws things at nurses who call to her door...... or the guy with the Alsatian called Fluffy who's 'bark is worse than his bite. Honest.' Perhaps her day even ended with a visit to a hardware shop to get tartan paint and a long stand?......  Fair play to her though. Unphased by the initial hard stare, followed by the crap veins.  

Hopefully that's us all set for cycle 2 tomorrow. I'm weirdly a little excited...... partly because it's another bit done, but mostly because I get time with my sister. That's always good, regardless of circumstances. Plus later this morning was spent in what I hope becomes a traditional pre chemo catch up with my inner circle girls. The ones who help keep me calm, make me laugh and support me. They kept me calm before cycle one and appear to have achieved the same ahead of cycle two. 

Onwards into the breach...... Let's get another bit done. As my son just said to me "the journey of a thousand miles starts with one step...... And all that....... you know??!" Xxx

Every cloud......

I know I've said it from the start and am like a broken record, but sometimes a trauma can open your eyes to the beautiful people all around you.  People can surprise you with kindness and depth and they inevitably appear exactly when you need them.

I had a couple of stresses early this week but each one was lifted by good, positive people. This help ranged from happy visits from people I love, messages of complete support and faith in me, a massive bunch of flowers, shared laughs, to meeting and enjoying time with strangers who were wonderful company. 

One of the main reasons I plucked up the courage to share my Garden Across the Road story was because the Garden owner asked if she could. Combined with a couple of friends who had been telling me to do the same thing, I plucked up a bit of courage and posted it on the blog. It ended up feeling good. Like I didn't need to be self conscious and could just let my creative side run free. It didn't have to be a literary masterpiece, so long as it was from the heart. Quite liberating really. 

In response tor sharing, that wonderful lady sent me a poem!! Her writing is far better than mine and Dorothy Jones is someone I'm really glad I've recently met. I don't normally name anyone, but I have to give her credit for her beautiful poem, plus I know she had originally tried to post it as a comment on the blog but had been beaten by technology. Earlier today hubby and I visited her garden again. It was as beautiful and peaceful as I remembered. And to finish off a wonderful walk, we then sat with her, her friends and family and enjoyed a good old chat. I'm good at  chat....... we know this....... no change!...... For me, this was far more than a chat with strangers. This was a relaxed conversation with warm kindred spirits. Uncomplicated, just chat, yet with depth as well. I very much enjoyed the whole thing...... good for the soul!! So here is Dorothy's beautiful poem........   I only cried a tiny bit...... honest........ 

And so it rained outside and in

Through all life's noise

The silence crash and din

Spring is here with hope a-new

With relentless drive 

And energy too.

Reliable vigour and vital cheer

To help us see over

Our worries and fear.

Shaking off the shackles

As someone who's been off work for 6 months and been somewhat traumatised quite a few times now, I'm doing pretty damned well! It's not a journey I'd relish walking alone, but thankfully I haven't had to. Writing has become a big 'thing' for me. Those who engage with my page long texts will know that!! In fact, those that have stuck with the blog will know it! Writing allows me to get things out. Sometimes I jump in and write before I think, but that's a lesson I'm learning. I've been guilty of a few 'fight the system' style rants........ but sure I always was!! 

At other times 'instinctive writing' can be a good thing. I have been doing a bit of more creative writing, particularly in relation to peaceful places in nature where I've found relaxation, and also my journey so far (a bit of a blog tidy I guess). I could make this a hugely long and boring story, but I'll cut it down! I wrote a short story about a beautiful place I'd been. I sent it to some friends who said they loved it and gave me amazing encouragement to share it. I felt wick, as you often do with stuff like this, but eventually plucked up the courage to send it to the lady who owns and created the place of written about. She was given strict instructions there were to be no 'sympathy likes' but I had a feeling, having met her, that she'd appreciate it. She did. She said it gave her goosebumps and asked to share it more widely. I felt wick again, but then remembered that the only thing holding me back was what other people might think or say. Then I remembered the only thing that has changed about me really is a slightly battered self esteem mixed with an ability to shake off negativity and be surrounded by positive, along with a slight "f*ck it" attitude. Not an entirely bad way to be!! Much the same as I was before, I've just to put some energy into it now, in order to keep myself well. 

Two different people 'directed' me to do this, so here goes........ definitely no piece of creative genius, but very much written from the heart. I'm more proud of the fact that I've broken off the shackles of caring too much about the negative attitudes in the world. I wrote this. It's far from amazing, but I did it and then I took the encouragement from people who care about me, and I threw it out there.  

I hope you like it. 

*takes really deep breath and hits paste* Xxx

NB. Intended to be relaxing. Do not read while driving or operating heavy machinery.....

The Garden Across the Road

The area of Connor and Kells, near Ballymena in Northern Ireland, is believed to have been the location of both an abbey and monastery, dating back to Viking times.  The monastery is said to be a deeply significant site to the Roman Catholic church and, in 1171 became the final resting place of Diarmaid, a King of Leinster. Saint Mac Nissi, reputed to have been baptised by Saint Patrick, is said to have used the area as a retreat.  Nowadays the two small villages have a population of little more than 2,000 people and are made up largely of farms and rural homes.

One of these homes holds a hidden gem.  A garden.  Not one that is landscaped or manicured.  Rather one where nature has been allowed main control, then tended to with love and creativity.  Full of wild flowers and items that have been placed there to be claimed by nature, like old bicycles and row boats.  Full of flowers and good energy.

Across the road is another garden, hence the name of this wedding venue, ‘The Garden Across the Road’.  This part is even more delightful.  Fairy houses, jam jars containing small bouquets of flowers or tealights, slates with words of wisdom such as “If you cannot look on the bright side, then I will sit with you in the dark.”  It is calm and tranquil.  The sort of place a person could sit all day, just soaking it all up.  An enchanted place.  Every corner turned reveals a new sight to be appreciated.  

There is copse of trees, with a path meandering through, leading to an open area of flattened grass.  A woodland oasis, to lie in the sun and watch clouds float by.

There is a lake, with various crossing points provided by simple wooden bridges.  A variety of places invite you to sit and watch the water; from logs to wooden benches.  There is even a papier mache sofa, painted pink……. probably by fairies.  Best of all, on the lake is a boat.  Tied to a wooden jetty, it is a simple wooden fishing boat, painted blue on the outside and white on the inside.  Exactly like Ratty’s boat in The Wind in the Willows. I am quite sure that if you sit watching it long enough a variety of characters will appear from out of the ‘Wild Wood’ and jump on board for a day ‘messing about’ on the water.

The Garden Across the Road is a special place.  A place where I would be no more surprised by a fox crossing my path than a pixie.  A place where problems disappear and inner strength is gathered and dreams are nurtured.

Dreams... asleep and day

I have a lot of daydreams, as we all do. Mine tend to be simpler now........ i used to daydream about being promoted at work, having a massive windfall of cash so I'd never have to budget again, getting front row at all the best gigs. 

Now I daydream of getting back to work again. I dream of feeling sharper and not having to concentrate so hard. I dream of being able to completely trust my body again. I dream of being like my old self (in terms of health, but carrying with me the lessons learnt and friends gained through my cancer journey so far), I  dream of getting back out to gigs, I dream of an end to all seizures no matter how unnoticeable they may be to others, i dream of trips to beautiful relaxing places, I dream of a completely clear scan (somebody's got to be the miracle, right? I want to be the story people tell to reassure others...... "you'll be ok. I once knew a girl and she was told hers couldn't be completely removed but then a scan showed it had been. That was 30 years ago!" I want to be like the stories people tell me) I dream of reclaiming my car from my son, I even boldly dream of publishing a book. 

Many of those dreams could come true. I manage my expectations, but I also push myself to ensure those dreams don't slip out of my reach simply because I let them.

I also have a lot of sleeping dreams. These can be even more random than my daydreams. Sometimes they're lovely....... wandering through lavender fields. A friend discovering a cure for all chemo side effects and rushing it to my door.  

Sometimes they're not so lovely....... This morning I had a few extra hours, after a very unsettled night again. On waking it took me a minute to register three of my female work colleagues weren't here staying. I'd dreamt of the four of us sitting on my bed, sharing laughs. Something akin to the sleepover in Grease (a reference that may only be understood by female and possibly male readers over a certain age!) In the midst of all this frivolity I was giving my son a really hard time over what shoes he was wearing to work and a general lack of organisation around things he needed to do. This one is probably something of a guilt dream, as my son and I have sniped at each other a bit this week. Fairly unusual but definitely not something we should be wasting time doing. Message received and understood BFG......

Yesterday morning I would've sworn blind I'd been up three or four times through the night being sick. I vividly remembered it, but hubby was sure there was no way it could've happened. He was sure he'd have wakened. I'm not so sure of that, but I'm pretty convinced I would've shaken him awake to share my discomfort and fear. One up, everybody up! Why suffer alone?? It seems he was right....... there was more evidence. I sleep with a small, shiny basin beside the bed! I've used it once, but a wise ambulance driver once told me  'better looking at it than for it'. It remained exactly where it had been when I went to sleep. Complete with the bit of fluff that had been in it for days, but that I finally removed yesterday! Still plenty of water in my water bottle. The en suite was spotless. No questionable odours or splashes. No handprints on the floor. Still plenty of toilet roll and full pack of tissues on bedside table. My toothbrush was bone dry.....even though I distinctly remembered brushing my teeth recently before. After a bit of persuading and listening to the logical side of my brain, I realised it was just possible I'd dreamt I was sick, rather than it actually happening. It was exceptionally vivid and horribly unpleasant, but better than it actually happening!! 

Having said all that, I could have made that dream reality last night  as I polished off a dirty McDonalds....... Don't judge me! I've lost weight and am now under 9 stone, it was hubby's birthday, and I was always partial..... I've had a few sneaky McD's over the past 6 months but steered well clear of Chinese and I even checked the ingredients online prior to final decision. I'm still allowed the odd treat! Without scudding myself........ it's after 10am the next day and it's still down......digested by now surely??......

My other big excitement of yesterday was getting a second opinion about my eyes. I decided it would be worth paying for a local optician to give my eyes a good check, rather than totally trusting the big multinational I went to years ago because they were cheaper. Thankfully my local optician didn't hold it against me as I skulked back, tail between my legs. A very thorough check showed no damage to the optic nerve and everything as it should be, including peripheral vision. The only issue appears to be that I'm getting a bit older...... my short sightedness is now mixing with long sightedness. I'm possibly just more aware of it now as I'm doing more reading and am very sensitive to any changes in anything really. I can live with getting older..... in fact I positively welcome it please! When I was first diagnosed I had someone text me a 'sympathy text', which included reference to her family member has a brain tumour and is now blind. Helpful. Positive. I seem to remember telling Radiotherapy Unit staff, and adding "don't you dare take my sight, I couldn't be listening to it if I'm proved wrong for being cross about that!!" They laughed, told me they knew what they were doing and were very careful. I'm glad they were! Again, I hesitated in saying that in case I scud myself....... Then I remembered that if I'd been scared to say anything positive that happens, this would be the most miserable blog in the world! Boring sometimes, I'll take. Miserable and negative, nah not taking that one.

Having said that, in the interests of honestly and letting people know they're not alone, this week has been a rough one. My ability to deal with stressful situations has reduced, and I have to be careful to just remove myself sometimes.  Nothing that's happened this week has been serious. Stuff we all deal with every day. As always I'm trying to do that again. Reminding myself that little things aren't worth getting uptight over. It's taking time and I'd imagine it'll happen again. What I also know is that getting myself into a tizz makes me worse. It gives me headaches, leads to absence seizures. It makes it hard to motivate to get up and jump into the day. It makes it harder to sleep........and so it goes round in a circle......  The old, slightly stressy Trish keeps trying to nudge her way back in. I'm trying to welcome her tenacity and ability to get things done, whilst pushing away the bit that leads to feeling anxious. My fears have changed somewhat, but I'm still full of fears. I used to live with constant fear of another seizure, of being told it's spread, of being told there's nothing more they can do, of imminent death. Now I live with far from constant, but come out every so often, fears centred round things like treatments being postponed due to a mess up with bloods, and bad news from scans. I still have to have a wee fight almost daily against these fears. There's nothing I can do about them really. I've taken a bit of control around ensuring appts etc are all sorted. I'm going to end up 'one of those' callers...... one of the ones everyone fights to avoid. I dealt with some at work, the way anyone working in the public sector does. I always tried to show kindness and attention because I usually found the worst offenders either had significant mental health problems or were older and often lonely. There were exceptions to this rule of course, but when the shout came over to me "That's one of yours", I generally didn't avoid the call or letter and tried to listen with patience, genuinely believing everyone has a right to be heard. And often that's all they wanted..... to be heard. I'm hoping good karma/ energies/ heavenly reward will ensure I get the same treatment. It seems to be working so far. I try to stay pleasant and mostly find people are good, and will be nice to you if you're nice to them. Plus nobody really goes out to make things harder for you in this situation, in fact there are very many who do exactly the opposite.

Thank God for the funny friends! Through the rough week emotionally, and at times physically, there has always been a joker there to make me laugh! And a husband to go for walks with me..... and cook my dinner........ and make me laugh....... Patience of a bloody saint!!!!

A hideously long blog...... again....... A person who always has huge amounts to say really shouldn't be allowed to get bored........ Don't worry, there are plans afoot......... within my capabilities...... Xxx

Redemption

I feel like a broken record, but........ it's definitely people that make a difference. If people help you and reassure you then my days are so much easier and I feel so much better. That's probably horribly reflective of the battering your self esteem and self worth takes during a time like this. Validate me, reassure me, validate me!! I have never been so sensitive and delicate in my entire life! 

The disadvantage of this sensitivity is an ability to burst into tears when looked at the wrong way ("they feel sorry for me"), mild paranoia (usually connected to feeling like a burden/chore or a duty, or a feeling of being patronised) and catastrophising (my bloods won't get done on the right day, my treatment won't get done, my sister will have travelled over for nothing, my life is going to be on hold for even longer). 

On the other side, this sensitivity has allowed me to see the best in people, to open my heart and not be afraid of telling people how I feel about them. This ranges from telling dear friends every time I see them that I love them, through to almost crying when the Surgery rang me to reassure me about the bloods being organised for the right day and with the right nurse. Proof again that I'd got myself into a bit of a state over nothing....... The control freak just hasn't quite learnt how to trust others charged with my care....... The woman I spoke to from the surgery today allayed all my fears. Reassuring me it was absolutely understandable to want to be sure everything was arranged, efficiently took charge and then rang me back to confirm everything that had been done. What a difference it makes. Complete redemption. Although, in fairness, I probably hadn't really given them a chance before I got myself into a flap...... it is undoubtedly though the people like this that make things easier.

I'm trying desperately to hold onto the good aspects of the sensitivity, whilst taming the negative aspects. The 'happy drunk' can stay..... "I love you, no but I REALLY love you!" "I've always liked you. Now I know why." "I like you. You've got a good vibe to you" (usually to people only recently met...... doctors, receptionists, nurses and anyone else that crosses my path that I decide I like!) That type of sensitivity is ok..... hopefully somewhat endearing, completely heartfelt and sincere, and hopefully spreading a bit of love about. 

The more negative aspects are the bits I'm working on. These are personality traits that I've always had I believe...... In particular, the "I'm not good enough..... undeserving" trait is one that needs kicked to the kerb. The other big area I'm working on is the 'calm the f*ck down' area.......!! My sister tells me off for this...... "You've jumped way ahead. You're writing a whole story without all the facts. You're way ahead of yourself." Now I'm trying to take a breath, and remind myself it'll be ok regardless. I'm getting better, though it's far from being mastered! I often have to quite literally talk myself down....... or introduce relaxation methods like meditation, breathing exercises or just reading a book. Mastering this is the only way I'll be able to get my life completely back.

The other big thing I'm trying to do at the moment is remind myself everything doesn't need to be on hold until the end of chemo, or indeed for the rest of my life. There are some things I just wouldn't be capable of yet, or be interested in doing. Going to a gig seems a long way off, but not as long as it once did. I had really hoped to be reintroduced to the music world..... Foy Vance at Custom House Square was a goal...... he's not too loud, it's outdoors, it wouldn't be too crowded with people I know. Unfortunately it's fallen within days of a chemo cycle so just isn't feasible. My next small goal (though I set these hesitantly for fear of putting pressure on myself) is Ryan Adams. We already have tickets for this one. Again, he's not generally too noisy, it's Ulster Hall and we have seats....... we'll see. No pressure, but a vague goal.  Aside from gigs, what else makes up my life?? I'm hoping to go back to work in a very gentle capacity. And I've a couple of reserve ideas for if that doesn't happen. The important thing is that my brain keeps getting used. My consultant warned of the dangers of sitting at home, stagnating..... doesn't appeal to me. Plus I get bored and I need to get s better daily routine. I've always kept up a bit of walking (I'm not quite West Highland Way fit again, but over time....), I still read (although, looking back, there was a long time when even that took too much concentration..... it's when I remember stuff like that when I see how much progress has been made). Seeing friends has become an even bigger aspect to my life, and it's nice to have time to do it. I've got to know people better and formed bonds. I'm enjoying that. 

Yes, my life is coming back. It's a slow, painful process, fighting ever changing physical and mental battles, but it's getting there. Nine months of chemo is too long to lie down completely. Especially not when I've lost so much time to all the other treatments and shock. 

I'm 42 years old. I've got limitations, but I'm neither lazy or stupid. I'm not miserable and I don't intend to become so. Like anyone with a serious illness there are a lot of daily battles, but every success pushes me onwards. Thankfully my support network remains incredible. I have to keep a diary, I've so many visitors etc! Not something to complain about! Xxx

Urgent party.....

Seems the party to introduce everyone might need to be brought forward and happen more urgently than intended........ Ive spent hours over the past few days trying to sort out making sure the right bloods are done at the right time and by the right person. I accept I'm possibly being a little demanding with saying I would like a particular nurse to take them....... but when you've fallen foul of Gone Digging as many times as I have then you learn to keep your chips safe....... 

I suspect though that it shouldn't really be the patient ringing the oncology Ward to check what bloods the GP's surgery needs to take. I also suspect the patient shouldn't have to feel like a demanding diva because she has to beg for a particular nurse to take her bloods, due to agony inflicted by others. 

I also suspect you shouldn't have to physically feel stress levels rising because you don't trust the competence of some of the places that are tasked with keeping you safe and well, and because you waited all afternoon for a promised call back to ensure you are booked in to get the bloods you need to get done.  I'm sure it'll all work out and be grand, but what may be routine to some often has a huge impact on the patient and family.

I am supposed to have bloods done the day before my next treatment. It has to be the day before. The results determine whether I get my picc line in and whether I get my treatment that day or not. Pretty big deal to me. Especially when my sister's flights are booked for her to come over and be with me for chemo again. I have had to phone oncology myself and get a list of what bloods need taken. I have yet to get confirmation from my surgery that I'm booked in to get these taken and that my 'bloods guy' (the only one who can get blood without either using 10 veins, of leaving me looking like I've had my arm stood on by a very heavy person) will be the one to do it. Slightly demanding? Yes, probably. Hugely important to me? Yes, definitely. 

These things could be so easily sorted. Instead, I'm left stressed and with a pumping headache (granted, not helped by the thundery weather....... gah!) I'm Thunderstruck. 

Ah, such a long blog..... and so negative. Taking the good out...... I'm dealing with it. This is the real world. Be it dealing with a cheeky person in a shop, trying to pay a bill online, trying not to get upset over something on the news or trying to organise getting bloods taken.......these are things that the real world throw at you. I can't keep anxiety down by just not poking my head out into anything stressful. There are going to be annoyances and rows and hurt....... I'm getting so much better at dealing with all that stuff now. That means I'm getting stronger. Some of it I shouldn't have to think about, and it makes me cross that I'm having to, but the fact is that I'm doing it.

Mentally stronger. And physically it seems I'm doing ok too! Sometimes I get really tired and I definitely need recallibrated..... to the right, to the right, everything you own in the box to the right........ Beyonce?? Anyone?? She went to the left, I tend to go the right.....But I went to my Cancer Keep Fit class today and had my 'excellent level of fitness' confirmed..... I didn't have that before for f*ck's sake!! I suspect the bar was being set very low. Designed for cancer patients undergoing treatment, the class is a great way to get a bit of physical activity, whilst meeting others on their own journey. I enjoyed it thoroughly. I did take a friend with me this time...... I would imagine there was much debate about who was who's carer!! Physically she's obviously in a much better place, but mentally....... she makes me seem completely sane!....... which is partly why we've always been friends!! She makes me laugh. Anything goes. A friendship with depth and understanding. Someone I can be myself with completely. Someone I have cried with. Someone who is by my side unconditionally. My surrogate sister, especially lovely when my own can't be here. Someone to laugh with, often to the point of hysteria. 

My point in this hideously long rambling?? I'm hugely frustrated by the lack of a joined up approach in our Health Service, but I'm getting stronger all the time, in every way. Thunder storms are the ENEMY of people with brain tumours. Oh, and you'll never beat the love of good friends and family to help you through tough times.

I suspect I may have made those points before......... but now they're off my chest again. Xxx

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