Heartbreak and self inflicted drama

I thought Fridays were supposed to be the best day of the week?? Maybe it's just when you get to the end of them.........

This morning we lost the strongest link in the Ward of Winners. The mummy of the gang. Someone who helped me at the scariest time of my life. Someone who looked out for me, while inspiring me to get up and keep going. One of the most special people I have ever known. I know from having seen her recently that she was completely at peace. Her love of her family and her very strong faith resulted in a calmness and dignity that will no doubt ease everyone's sadness. Though everyone will still be sad. Because she was a beautiful person. When I was doing radio I went to see her and she gave me a ring so 'when you look at that you'll know I'm always with you'. I believe that to be true. I'm not sure I'd have been so quick to believe anyone else telling me it, but I believed her and have worn it daily since. She left strict instructions that she was to be remembered fondly, so although my heart is broken, I am also able to remember with fondness. The jokes from across the Ward..... the secret gifts of homemade cheesecake..... the laughter at another wardmate who dreamt of Jack Nicholson and shouted out through the night "Jack! Jack!"...... the inspiration of watching her get up and use her 'three-wheeler' to get across the ward when I couldn't even be bothered to scratch my nose......... her pride when her sister washed and straightened her hair (as I brushed mine with a baby brush, joking I was like a mermaid!)........ our daily joke where she said "I'm not staring at you. You're just in my line of sight", and I responded "Well I don't know why you wouldn't be, sure I'm gorgeous!" (With two severely black eyes and a strip of surgical tape covering the would going round the entire side of my head!) She was one of the most beautiful people I've ever known and I have cried today for the world's loss. But I also remember her with a smile, because I know our friendship is a prime example of why people say "everything happens for a reason". I wish I'd met her in different circumstances, but I'm honoured to have met her.

Knowing her serenity and peace came largely from her devout beliefs, I felt it would be nice to go to a chapel. I lit a candle for her and just spent a bit of time lost in memories of her. I think she'd have liked me doing that...... whilst laughing at my slight ineptitude at knowing what you're supposed to do!

Whilst trying to deal with this news, I had to get my blood tests redone. I asked a few too many questions and ended up being told my chemo may not be started on Tuesday. The chemo that I caused such fuss over and which I would rather run naked up the street than have to deal with........ yes, that one........ the chemo I spent days meditating and being counselled by friends and family over, to the point of running the risk of going in on Tuesday in a robe with the hood up, thumping my fists together and shouting "DO IT!"....... yes, that one. There's possibly nothing worse than psyching yourself up for something terrifying, then to be told it might not happen. Like preparing to abseil down the Obel Tower and then being told the wind is the wrong direction. What I am proud of is that I didn't have a total meltdown. Although I'm still very likely to do exactly that on Tuesday! A few tears and definite worry, but I was able to rationalise it. If you can't do it, it's for a reason. Your body isn't ready. A short postponement won't make any difference. Better to know and have these things dealt with. At one point I even became convinced my friend's funeral would be on Tuesday and that's where I was meant to be. In the end up my friends funeral is Monday, and at this stage there's nothing to say my chemo will be delayed. And you know what?  If it is, it is. Personally I'd rather just get on with things now. I promised a friend that 2018 would be our year, so the less this nonsense can encroach on it the better! As it stands, the plan is still on. Independence Day. I intend to spend the weekend resting up and getting tour fit again. Drawing on the strength and calmness of my dear friend. Xxx

(Backup) Gigs, markers and brains

Last night was the Greenday gig in Belfast..... that's twice this year I've missed them. Earlier in the year I was booked to see them in Manchester, but ended up in hospital. This time my wings were clipped by a perforated eardrum and general tiredness. At a time my surgeon and I had hoped to both be there...... I hope she went and gave it loads!! At one stage I'd had images of us up on stage, leaping from the drum riser with Billie Joe, arms raised, like John Hume and David Trimble with Bono..... victorious!! To a  thunderous rendition of "Still Breathing"...... or perhaps "Basketcase"! Seems brain tumours can be tediously time consuming to get under control (or shift completely..... again I remind you.... I'm not saying I'm going to be a miracle, but I haven't ruled it out!)....... Somewhat similar to political processes, there will be highs and lows, ups and downs. There will even be the odd diva strop moment and storming outs!  Demands and bargaining. Mistrust and narrowed eyes. A belief that 'them'uns' don't really know what's best for you. But then hopefully a leap of faith. A willingness to trust. And a successful outcome. For the long term.

By the time I finally get to see Greenday I fear Billie Joe will be completely grey (though he probably is already.....I don't know anyone over 10 with hair as black as that!), and complaining of his gammy knees..... Wait for us Billie Joe Armstrong! Wait for us!!

I've said before about often wondering how you lot know what needs nurtured...... I'd spent the past few days thinking a bit about work. Mostly for financial reasons I'll confess, but there's little doubt I miss the mental challenges it brought me. This morning I was contacted by one of my cleverest friends! She told me something really interesting that just nudged my interest...... a piece of research and resulting intended outcome...... designed to help school kids become better equipped to deal with ill health in later years. Forward thinking! Exactly what we need in this country! I was really quite excited by it (GEEK!!) and, as I pondered to myself over research that could be done, analytical reports that could be written and presentations that could be delivered, I realised I could still add value. I had inadvertently reminded myself that I can still think, that I have ideas and that I'm still capable of standing up and delivering them. My friend had helped me do that. An important reminder when I haven't been at work, challenging myself, for 6 months now. There's no denying I'm not fit enough yet to jump back in and I'm horribly unreliable in what I can and can't do of a day, but it's hard not to miss a world that I love so much. 

Following this another person got in touch. Someone who never fails to challenge me mentally....... a man who once sent me an email saying, "What impact could the eurozone crisis have on organised crime in NI? Your thoughts...." and then shared laughs with me over the fact I was the only person on the lengthy email list who actually bothered to answer it! At length. With thought.  In fact, I believe I may have ended up researching it and writing a short report on my findings!! (Again, GEEK!!!)

Closely followed by contact from one of the most forward thinking and effortlessly intelligent people I know. It contained a short reference to politics, and again made me think! I joked with her about this being a day for mental stimulation (actually I was joking with my sister, but accidentally sent it to her..... she's not someone I'd ever be anything other than flattering about so it was fine)..... I commented that if another named person got in touch then my brain would've been well and truly exercised for the day! You know the end of this story, don't you??...... The person named literally got in contact within seconds of me sending the previous text! Serendipity. Again, spirits lifted! 

I can only describe it (and I'm sure someone else already has and has made huge amounts of money from their theory!) that there are different parts of you that need fed....... the emotional side, the intellectual (probably being generous to call it that with me..... I can't even send s text to right person!), the humorous side...... Each needs nurtured....... How do you lot know??? Because you do know.... sometimes better than I do!! Without fail someone will get in touch  at exactly the right time. If I'm feeling s bit down, someone will send me something funny. If I'm feeling a bit ugly, someone will throw a wee wink (because we all know girls need those every so often, no matter how much your husband loves you!) If I'm feeling a bit lacking in confidence someone will ask my opinion about something or remind me I'm still of value. If I scared about something, someone will be there by my side, reassuring.

I am still astounded by the huge variety of family, friends (old and new), and strangers who meet these needs at exactly the right time. Like I've somehow sent out a request for help.... quieter and subtler than Pongo and Perdita's Midnight Bark, but just as effective! 

The rest of my day was spent in good company, sharing laughs, friendship, support and love. Thankfully, because it seems this was also very much needed. I received a phone call from my GP's surgery this afternoon and have to go back in to get blood tests redone.... something's a bit off, though I've been told not too bad.... after an initial worry, I've placed it into "things I can do nothing about" category, otherwise I'll fret and the stress will manifest in tears at/in the most random times/places, headaches, pounding heart and the shakes. Instead of all that, I breathe...... I think I've meditated at least 4 times today! Trust me, it really helps. Or pray if you're religious. Whatever works. Just times of stillness, to relax, remind yourself everything is ok. Alternatively you could sing! I did a bit of that too today.... gentle, happy songs..... like Matt Nathanson's 'Come on get higher' and Frightened Rabbit's 'I wish that I was sober'. Not so powerful they'll make you cry, but gentle and easy singalongability.

To end, I will tell of my victorious patches of hair!! Sprouting up like the first flowers of spring! Beautifully dark like Billie Joe's! And completely natural. There's a full line of them along my scar..... each now around a inch long, they're like wee beacons of hope behind the bald strip caused by radio.  I simply will not allow chemo to take them! They've fought too hard! Xxx

Tea bags and chancers

The blog can be a bit prone to being boring, so I try to write it when something has entertained me or there's a medical update of some description to give.

The only medical update I can provide is that my perforated eardrum is really annoying. And I have a headache like one I haven't felt in a long time. I suspect it's stress and tiredness related, due to normal life creeping in on me a bit today. A couple of very minor things, but both things that would've stressed me before and it seems still have that ability! I remedied with some extra meditation and some gentle reading, which sorted the stressed out feeling, but the headache unfortunately remains. Possibly more linked to the ear? Or the fact that I'm still wearing the wrong prescription contact lenses? Or the fact that my brain is still recovering from two major surgeries and radiotherapy? Who knows. If I were placing bets I'd say it's a bit of everything. The ear brought it on (it is literally pulsing..... like my heart has moved into my eardrum), and then it's been made worse by the other stuff. I'm having to be careful with balance too...... so no fast movements.

Medical gurn over........ things that have entertained me today....... I probably should've put this first. I remember being told you should put something at the beginning to hold the readers' attention....... I'm not sure "my ear hurts" quite cuts it! Hopefully, I can hopefully be more entertaining by yet again explaining how brilliant my friends are;

This morning I was woken to find messages from 'the girlies', reminding me it's the perforations that make all the difference....... Sydney......  

I also received a lovely photo of a broken legged former colleague with his wife pushing him in a wheelchair. One of those really lovely photos that just makes you laugh. They are laughing their heads off and it shines out of the picture. Nice people, being amused by life. My favourite type of people!! 

I also of course still have the lip syncing to Whitney video my friend sent the other day. Honestly it'd be vital in an hour if a shared it! He's a star! He sent me another one...... a more rock n roll one for the wee rocker...... I should be more impressed by it,  but honestly I can't get past Whitney!! I can imagine it being like the selfies with dog used to be for giving me boosts and reminding me life's still fun...... it'll be watched again and again!! 

I went to my 'shall we do it over coffee' doctor...... and apologised for the terrible joke. He shrugged it off and said he'd taken it as intended, which made me feel ok about it! He's actually not the doctor that I thought he was, so the 'meeting in the shop' embarrassment is somewhat lifted....! I had the joy of a lovely Treatment Room nurse..... another warm, 'you're doing great', arm rubbing type...... my very favourite type! Plus a lovely pharmacist who I really like afterwards too. I'm starting to think I need shoots like they have in Bishops shoe shop in Coleraine (wonderful shop, owned by lovely family, full of shoes!) to transport medications to me...... the surgery could shoot the prescription to them, they could shoot the meds to me, I could shoot a long rambling thank you card back!! Truthfully there is a pick up service, but probably best that's kept for people who need it. I have family and friends who are happy to help collect prescriptions etc and think nothing of doing it. Plus it's good for me to go myself. PharmCists know lots and can be great information sources. There are a lot of excellent services offered for unwell people..... through the Health Service and through charities. I avail of a few..... but I know there are some people completely milking everything they can get. Leave it for the people who genuinely need it, because there are many who do. Being lazy and being good at playing the system isn't a medical condition....... it shouldn't earn you motability car...... DON'T CRACK UP!!!!! We all know them. I am NOT referring to everyone with a motability car!! I'm referring to those that have one when they've no need. I know people on both sides of that fence.

Well things must be healing, because I'm becoming opinionated again....... not that I'm sure that ever went away! If you know me, you'll know...... opinionated and a little mouthy on occasion, but I'd hope never cruel or nasty. And would beat myself up for ages if I ever thought I had been....... Still me  xxxx

Humour is always there if you look....

After the scunneredness, always comes laughs!

Last night my gorgeous son was at a mates house. He'd said he'd text when he got home (sometimes I wake up and panic if he's not home...... such a mummy!) This morning there was a note under our door, saying "Home safe etc Didn't text in case I woke you"...... That's 18 year old code for "Didn't text because I didn't want you to see I got in less than 2 hours before you get up!" I heard you come in son....... plus I've done this before....... I'm just really happy he feels relaxed enough in his own home. No sneaking about, no lies...... living his life, whilst still having respect for his parents. Couldn't ask for much more than that!

 Late morning today brought a trip to a cafe with three true friends. Always filled with laughter and silliness...... they never disappoint! 

I had gone primed though, having managed to create a funny story all on my own earlier in the day. A nurse called to take bloods and when he left I saw a pair of glasses on the table. I grabbed them, sprung up, ran down the hall and chased his car up the street...... a pointless exercise as he was already around the corner when I took off.  I texted another nurse to tell her I had the glasses. As I sat back down there was a tiny niggle...... a pause for thought....... I texted my husband....... You know how this ends don't you?? They were my husband's glasses!!  Working hard to reassure, he gently told me not to worry because that could've happened to anyone. Thankfully on this occasion I wasn't upset, I was laughing! It's that knack of not being bothered if you've done something a bit foolish...... it doesn't mean you're suddenly damaged in some way....... everyone does foolish things....... just see the humour! Don't beat yourself up. Doesn't always work that way, but  it's great when it does.

The story gets even better, as I texted a friend to give her a laugh and let her know I was thinking about her. She responded that she was a little worried about either hubby or the nurse for their glasses taste......... I responded telling her "the nurse was male" and shaming her short sightedness (or long sightedness with these particular glssses!) I reminded her of the riddle where the surgeon says of the child "I can't operate on him, he's my son"...... girl surgeons and boy nurses?? Whatever is going on??!! In some ways I think that's probably a good way around....... girls are generally very careful, organised and neat (my thin, neat line of a head scar proves that one!) and boys can be really no nonsense, confident, get the job done (my 'bloods nurse' is certainly evidence of that). Now I'm reverse stereotyping in an even worse fashion than my friend stereotyped to begin with!! The moral of the story?? Gender often really doesn't matter. Sometimes the best laughs come from just not overthinking. Plus it proved to me that despite feeling a bit wobbly and dizzy the last few days (I suspect ear related), I am still capable of quick movement........ probably ill advised, but still possible!

This afternoon brought the unenviable task of looking at finances. Much as I've become accustomed to flinging it round me, reality is that everyone has a budget and that you don't get paid forever whilst your job has become trying to get better at the same time as staying sane. We've been luckier than many the way things have fallen and it's really hard to consider such mundane things when you've had a total awakening about what's really important in life! However, I did it. Another step forward, another grab at getting my life back. Another dip into the real world without falling apart. Done. I've never really been particularly materialistic I don't think. Like everyone else, I'd like to be loaded, but I know how unimportant it is in reality. So long as the bills get paid and I'm not living in a hovel, then that's ok. The next big calculator moment will have to come before January, but hopefully by that time I'll have a better idea of where I am and what I'll be physically capable of. At the moment I feel ok, mostly....... if I wasn't starting chemo I reckon I'd have been dipping a toe into my return to work options next week....... chemo makes that impossible, until I see how I react to it. But after that, who knows?? The world is my oyster and I'm quite quite sure I'm simply in the process of making a pearl at the moment! Xx

Unscunner yourself!

I just read my earlier update back, and to be Norn Irish about it, I can feel the pure scunneredness hanging out of it!! Not a real word?? Should be! Honestly, scunnered is kind of how I feel. Not in a total depression or really upset, just scunnered. Fed up. It'll pass and I'm sure equally I'll have other days of it....... it's kind of normal life, isn't it?? 

I was, however, a little disappointed in the undercurrent of 'I'm scunnered' that was obvious from my last blog entry. I know it's important to be honest and I'm not scared to share the emotional journey...... partially because it helps me to get it out in writing, and also partly in the hope it lets others know they're not alone in their feelings, and finally in the hope it helps families better understand how a family member might be feeling. So I'll always be honest...... but just being scunnered seems a bit unnecessarily negative. It's like just being in a foul mood....... sometimes you're better just to take yourself offside and sort yourself through it, rather than dragging others with you. 

So my sincere apologies if my pissed off mood had any impact on anyone else. Although I'm quite sure people have stopped reading by now anyway!! 

So, as has become my bizarrely public way of cheering myself up, I thought I'd remind myself of a few things to unscunner me!.......  

I got a wonderful day with my sister and we did absolutely nothing of any necessity at all. We chatted, we watched TV. Sure what could be a better way to spend a day?? Yes, I feel bad that she came the whole way from Manchester to do it...... but it was still great. 

My ear is a pain in the..... well in the ear really........ but could've been so much worse. Even if it did turn out to be something more serious then it'll have been caught. As I think I've learnt this year, if something really serious is going on then your body will eventually tell you, sometimes in a very rude fashion! Better to catch things early. Equally there's very little point sitting round worrying, because sometimes stuff just happens! To quote the wise philosopher, Axl Rose,  "I don't worry bout nothin, cos worrying's a waste of my time." People get perforated eardrums all the time (sometimes thanks to Axl), and if it turns out to be something more sinister then we'll know and it'll be dealt with. More likely, it'll remain uncomfortable and then it'll get better. I can't remember two brain surgeries, I hardly think I'll remember a sore ear.......

My friends remain beautiful and funny and sweet. I am spoilt by the love around me. Tomorrow I get to see three of 'my girlies'..... three very different, but all wonderful souls that have been unfaltering in their support for the last 6 months. True friends. Today I have enjoyed messages from a wonderful mix of friends...... some sweet, some who keep my strength up, some who boost my confidence and sone who are just hilarious and brighten every day........ Hard not to notice you have the best mates in the word when one sends you a video of him lip syncing (perfectly!) to Whitney Houston. If I could share it he'd be famous...... but he's made me swear!! 

Scunnered? Yeah, a bit. Happy that it's looking like something and nothing? Yes, a lot. Grateful for my family and friends? Always. Hopefully that has undone some of my 'I'm scunnered' vibe from earlier xxx

What's going on ear then??....

After a great weekend, I was looking forward to a day with my sister, being pampered at Charis in Cookstown...... a charity that provide complimentary therapies to cancer patients and family members. A day of relaxation with big sis seemed perfect and I was excited about it. But sure nothing stays constant........ I went to bed with a really sore mouth and throat. It felt like someone had scraped off a layer of skin. Then during the night I woke with what felt like a very high temperature. I threw my legs and arms out from under the covers and managed to drop over again. 

When I woke first thing I felt awful. Roasting and mouth and throat swollen. Worse ear pain than I've been having. Truthfully, I was pretty scared. It felt very much like an infection and was on the side of my surgery. I relaxed myself and tried not to write a whole story around it, but there was undoubtedly a major concern in my mind that I was fighting hard to keep under control.....

A visit from a doctor confirmed a slightly raised temperature, but not alarming. Plus a recurrence of a mouth problem I had before (a word to the wise...... use the mouthwash for a full week, even if it feels better, as it's likely to recur!), plus a perforated eardrum. Both uncomfortable and annoying....... but far, far better than catastrophising Trish's thought that I had an infection and could end up in hospital..... I'm getting bloods checked just to be sure, but it's looking ok. 

Unfortunately the trip to Charis had to be called off. My poor sister flew over from Manchester to make soup and a lamb dish, and lie beside me in bed watching really dodgy daytime TV...... sad we didn't get our relaxing day, but very glad infection looking less likely, and happy to get time with sis, regardless of what we're doing. 

I can't remember the last day I spent in bed....... but maybe it's ok every so often......  I've plans for tomorrow, plus a nurse calling, so the bed lying is a one day event.  I never want to be the drama queen, ringing doctors every time a get a twinge...... it's pointless anyway because I then never want the tablets they try to give me! Hard work! But equally I'm not stupid. I'm not going to have something serious happen because I didn't speak up. If something feels wrong then speak up...... Plus the very odd jammie day is fine! Xxx

Normality....

Sometimes the best way to feel normal is to try and actually act normal...... (bearing in mind 'normal' is a very loose word!) 

The past two nights I have slept soundly. Still some rare dreams, but not worryingly prophetic!! Well, unless I'm actually going to argue with two men selling £170 pairs of jeans from my dad's shed..... unlikely as it was a house he hasn't owned in years, and he lives in a flat so doesn't have a shed! This time my brain had pulled together irrelevant snippets and made a nonsense story, rather than actually paying attention to important things. 

I was slightly worried about waking and having quite a strong tremor in my arm when stretching..... reality is I've had a tremor on use for a while and I'm sure just waking up made it more noticeable. Proof that I'm still not stupid, I laid the arm over my husband's arm and went back to sleep (so he'd definitely feel any potential seizure!) Which of course didn't occur. 

I have definitely been feeling a lot more like myself again. Not always, and I'm finding bright light and loud noises particularly difficult, but when I am clearer it's a lot better than it has been. Maybe the radio tiredness is starting to lift a bit...... though my ear remains a problem and sometimes seems to affect my balance a bit, so I have to be a bit careful. Hopefully that'll be temporary. 

One of the things I'm finding really helps is to just do normal things. Yes, I have to be careful not to over exert, but it's also nice to allow myself to remember my old life still exists and I can dip into it when I'm able. Yesterday my son had a friend to stay. A boy we've known for many years. It was lovely to have him in the house, just like old times. They ended up coming in and watching Pointless with me. We shared potential answers and laughs. Like we always would've. I was so comfortable with our guest that I sat without my headband on. They no more cared! Big son is used to it, but his mate was completely chilled too. The only other people that have seen my Rhianna style undercut are my hubby and sister....! Our guest wants to be a surgeon, so I have shown him what a neat scar looks like, so he knows what to aim for...... he's promised to practice his running blanket stitch! 

This morning we visited friends and then had brunch with another friend....... more very normal happenings! I thoroughly enjoyed both and am now relaxing before the arrival of big sis later on. We've a morning booked at Charis tomorrow. They are a charity in Cookstown that provides treatments and other help to cancer patients and their families. It'll be nice to spend quality time with my sister outside a hospital! I'm hoping I can manage to get a bit of a chance to talk to their dietician...... I must be the only cancer patient who's put on weight!! I don't eat huge amounts at a time, but I do eat high protein and often.... In true Tricia style, it's going on round my middle...... a woman of a certain age perhaps...... gah!! Yet another thing I should probably be grateful for...... there's a bit that can safely be lost during chemo. I'm quite sure I still have a bag of clothes from plumper days that I can look out...... although I say that sitting in my jeans, that still fit.......so all is not lost! 

Anyway, normal. Trying to remind myself it's ok to do that. As normal as I ever was! I might not be at the stage of work or going to rock gigs, but I have just made up a Spotify playlist that remains relaxed and easy listening without going as far as Bruno Mars and Justin Trousersnake! And I'm taking a mild interest in politics again. Do you think I could crash into Stormont, give them some heartfelt advice and then just blame the brain tumour??..... oh wait, there's a flaw in my plan....... there'd be nobody there!! Going round them all individually seems a little time consuming!

A relatively busy week this week...... Charis, meetings with friends and the embarrassment of the Doctor I made the terrible joke to! Plus some practicalities...... our bathroom cupboard needs tidied up, and I have some cards to send to people. I can never remember who I've sent them to, so if you're one of my shining stars you're likely to get two or three..... or none at all!! Don't be worried or offended either way! Or you may just receive one of my horribly long texts/WhatsApp/emails....... if we were still in the old Nokia days there'd be a few of you living much quieter lives at the moment! It's so important for me to say it though, and it's always heartfelt. So if I'm telling you you've helped me and I love you, then you have and i do. Trust me...... I have no capacity to lie. Xxxx

What's your super power?.....

A few kind of odd things have happened recently. And I'm having some really weird and very vivid dreams. I initially wasn't sure whether to write about it, but I caveat this with the assertion that I'm just picking a lot more up at the moment due to having a lot of time on my hands and paying far more attention to people. I decided I would write about it because I think it's pretty fascinating what the subconscious mind can pick up and how, particularly when you're resting, throw it all back out in some sort of jumbled story. 

The other night I had a bad nightmare. It woke me up with a pounding heart. I dreamt that a friend of mine was really ill but that nobody was telling me, for fear of upsetting me. I couldn't shake the uneasy feeling all night, waking every few hours. In the morning I contacted her to find out she'd been sent to A&E the night before...... A little disconcerting. My rational mind (which thankfully still dominates!) knows that the reason for the dream was because she'd looked very pale last time I'd seen her and I knew she was a bit unwell, just not really the nature of it. Plus she'd gone a bit quiet. So it's really not particularly surprising that my brain put all the information it already had together and created a nightmare.  What would normally be a niggle in the back of my mind became a huge fear. Truthfully it hasn't shifted, but I'm allowing it to be a concern, without consuming me. I'm trying to avoid writing a whole story around it. Sometimes people are unwell. If there's anything you need to know, then you'll know it. 

Then last night I had another dream. This time I was sure I had woken to see a man at the end of our bed. He was wearing a summer straw pale trilby hat. When my poor hubby woke up I told him I thought I'd dreamt his grandfather was at the end of the bed (despite no memory of seeing a the face). A man I'd never met or really seen many photos of..... wrong build, wrong height, wrong coloured hat (although he did have a trilby). Reality with this one is very probably that I'd spoken to someone a few days ago who talked about seeing her deceased daughter at the end of her bed, that my son has a summer trilby hat hanging on the top of one of the many guitars in his room,  and that when looking for something earlier in the week my husband had shown me a photo of his grandad. He wasn't wearing a trilby in the photo, but I'm sure I've been told at some stage that he had one.

For those that have seen the film 'The Usual Suspects' (those that haven't, watch it - a modern classic! And don't read the next sentence - massive spoiler!!), Kevin Spacey's character makes up a story based on things he sees in the room he's being interviewed in. Just snippets from here and there, pulled together into a totally believable and complex story. I guess our brains do that all the time. Mine just seems to be doing it very vividly at night! Dreams are probably always our brains doing this. The fact that I'm doing it more vividly is probably because I'm paying more attention to things during the day now.

It feels like my brain had become completely overactive at night. Signals flying everywhere! It often feels like that during the day too, but night time is worse. I find it interesting and hope it's indicative of healing. I also hope it settles itself, as I could do with a good nights sleep! I even sometimes wonder if all the daily meditation and calmness is leading to my brain just saving everything up and churning it all out when I'm sleeping! 

Who knows? I'm certainly not a brain expert and I'd imagine there's loads of different theories. Some will read this and believe I've gone completely mad, some will think I've become psychic and others will be interested by it all and believe the same as me about the science of why it's happening. Part of me wants to know so much more about the brain, how it functions, what the cancer and treatment does....... the full science behind the brain and dreams etc. I remember seeing my scans initially and being totally fascinated by them. The issue I'll always have is that I overthink..... so to start finding out all those things could be a bit too much for me at the current time. God knows what dreams I'd start having!! Too much knowledge can be a bad thing too.... so I'll wait until I've got this thing beaten and then I'll maybe start to learn a bit more.....

I think I'll just stick with being amazed and awestruck by the strength of our brains. Being comforted by its ability to do the most amazing things. If it can do all that, it can shift a few dodgy cells, surely?? 

Xxx

Laughter yet tears....

Two of my radio buddies have had setbacks. One has contracted MRSA, and the other has been further reminded of her prognosis and likely lack of effective treatment options. Yet again I am reminded of my good fortune. Though both are exceptionally strong girls and I would place my money on both to continue to kick ass. I don't offer either sympathy, because that would suggest they need it. I merely offer a friendly ear and a strong shoulder.

The first I know reads this blog, so I'll remind her of the reality - you're as strong as an ox and will have mrsa cleared up in record time. 

The second is a true warrior, who will make the decisions she needs to make, before completely proving why it's not all about modern medicine. When I'm wearing a t-shirt saying "I'm not saying I'm going to be a miracle, but I haven't ruled it out", she'll be wearing one saying "Brain tumour? Give me a proper challenge!"

It can be hard to hear of others getting it a bit tight. Both because you worry it might be you next, and also because you feel a bit guilty. I continue to have niggles, most notable my ear ..... annoying but not really the same... Truthfully, in terms of how I feel, I'm noticing as improvement. I kind of feel like I've jumped back to when I came home post surgery. That time I was just starting to notice an improvement days before I had to start radio. This time I've got a couple of weeks to build myself up, before the next big gut thump. A positive luxury!! Two lovely weeks to relax and to enjoy the company of friends. I had lunch with one today....... someone I haven't seen for a long time. She was great company and I had a really enjoyable afternoon.

I remain full of laughter...... though will admit that sometimes I probably need to think a bit more before I make jokes out loud! I really don't know whether the tumour and resulting treatment is to blame, whether there's not much change from before, or whether I'm just sometimes a little bored and feel the need to brighten my day with a laugh. I do have a hatred of people who didn't know me before trying to imply a poorly made joke or an inappropriate hug is due to what's going on....... I was always capable of those things! Though I will admit to giving them slightly less prior consideration  these days!

An example occurred earlier..... it's not something I should share, I know this. But it's hugely funny and I like to share funny! I fear it may be slightly lost in the telling by even me realising there are some things you should never share publicly. Let's just say I was trying to arrange a 'lady-type' appointment with a male GP (around my age, think he may live near me) prior to starting chemo. We were literally comparing diaries over the phone, to see when would suit both of us, at which point I quipped "I feel like we're arranging a meeting. Will we do it over coffee??" Wholly inappropriate? Yes. Funny? I think so, yes. Might not be quite so funny when I'm in for the appt and I have to maintain my dignity........or when I meet him at the shop!

For me to ever blame the tumour for anything I say or do would be like admitting I had PMT........ and we all know that no woman ever admits to that!! Genuinely, I don't think I've changed at all. There's perhaps a filter flicked off, but mostly I'm quite enjoying that! Kind of like growing old disgracefully at the age of 42......  As I've said the whole way through.... we'll never know what's to blame for what..... medication, surgeries and radio, stress, location of tumour, or just me not really caring quite so much about what people think. I like to think it's the last! Xxx

Breaking all the rules....

I'm not really supposed to have baths in case my body does something mad........ it's a bad job when having a bath is as rebellious as you get!! Though I'm not sure I was ever really a rule breaker anyway....... a rule questioner certainly, but not really a breaker....... I'm now spending the rest of my afternoon wisely, watching Footloose whilst also watching hubby plant the fortune worth of plants I bought yesterday..... It was suggested to me that pot planting would be therapeutic. It seemed like a great plan, until the temperature topped 25 and there was no way I could be out in it, and then today it started to rain. No garage therefore no pot planting, rather a bath and Footloose........equally therapeutic I'd suggest! Plus hubby looks like he's enjoying it....... you're welcome dear....

Yesterday I had a visit from a local Minister. They must've heard about the priests and worried they might lose one...... I'm joking... and they never had me anyway. I haven't been to church since I was about 15!! He was a lovely man. I've never met him before and was very impressed with his ability to hold an open minded conversation about how religion and science can sit side by side, and also what a shame it is that some in this country hide behind religion, using it as an excuse for poor behaviour. Refreshing. I enjoyed his company.

I can't remember when I last blogged so I'm not sure if I mentioned (yet again) how endlessly thankful I am for good friends. I met up with three on Friday and it was more mood lifting than anything else in the world. One told a story that necessitated her practically running around the table...... always reminds me I'm doing ok. I've been pretty sluggish the rest of the weekend, but the weather really isn't helping. I've still got outside evety day. This morning was spent walking the beach, paddling and trying to avoid jellyfish..... though I did wonder if it might work like acupuncture; the sting drawing my attention away from everything else! I decided not to find out as having the big man pee on my foot in public might just be one humiliation too far. 

I'm allowing myself a bit of relaxation time...... Independence Day will come soon enough, and I need to be tour fit! My ear's still causing me a lot of bother, I've got a headache, I'm wrecked, and I can be a bit unsteady on my feet..... winge winge gurn gurn.

We're treating this time the same way as we did pre-surgery. Rest up, plenty of relaxation, but daily exercise and time with friends too. Building up my confidence again, but not just going hyper and dealing with everything by being 'busy'. I'm continuing to meditate daily, and that's definitely helping greatly with any potential crippling fear and anxiety that can just over me in a wave. It can still come, but I'm much better at managing it, so it doesn't take hold. Never thought I'd see the day I was saying things like that, but I reckon we'd all be pretty surprised if we realised who's felt a good dose of nerves at some stage...... I suspect there are some pretty important and seemingly totally calm people who have felt a wave of anxiety wash over them at some stage. Serious illness can just reduce our ability to make it look as easy as we used to! 

This week is filled with time with good friends and complimentary therapies.... just a wee thing every day; not getting totally carried away in a bid to distract, but ensuring I have plans and am getting out. In training..... tour fit....... if Steve Tyler from Aerosmith can still deliver on stage at 69 (which I have it on good authority that he can!), then I can handle a bit of chemo at a MUCH younger age.....! 

Head f*ckery

Not a great week emotionally. There was always the risk of a crash after radio ended...... yet another change in routine and I knew I'd miss my bus mates and radio buddies, although I hear regularly from many of them. The weekend in Donegal may have inadvertently even made the crash a bit worse...... it's so nice to be lifted out of the real world, but can be a cruel thump when you're dropped back in. 

Chemo drama has rumbled on a bit.... largely because of my hysterics I'm ashamed to say. Yesterday the hospital rang to offer me an appt with my consultant prior to starting chemo. To ensure I'm ready for it and to give me a chance to ask any questions I might have. If I'd thought Wednesday's meltdown was bad, I surpassed myself yesterday. My overthinking mind as usual wrote an entire script around it....... they think I'm too weak to do this........ they're only covering themselves......... they think I'm a disaster........ Cue all the self judgement and beating up that I swore I wasn't going to do anymore! 

After much distress and talking down by my poor sister, followed by sensible thinking out loud and discussion with hubby, I thought through what I hoped to gain from seeing her again for an extended appt prior to starting chemo. What could she tell me that would influence my decision either way?

Realistically, like any person in my position, I want to be told that there's no need to do the chemo, or if I endure this that I'll be completely cured. I'm not going to be told either of those things. She was clear from the start that being offered chemo was a good thing as it was another treatment.... that I wouldn't be offered it if it wasn't likely to help. I was also told at the start that this couldn't be taken away completely. It's about management, but it's long term management. It's not the difference between a short time and a shorter time. This is part of a long term treatment and management plan.

So I thought about what I would gain from seeing her. The reality is I've made her the villain of the piece, and I'm sure I'm not the first to do it to her. I said from the start that there would be a leap of faith at some point. I was referring to surgery at that point, but this is no different. There are stages during any serious illness when you either put your faith in the experts, or you rage against the machine. I've always been a bit guilty of the latter...... sometimes with good reason. The nickname Big Red didn't just come from my (completely unnatural) hair colour...... I've never been afraid to challenge. A good thing in some ways, but can be very damaging in others. Choose your battles in a way.

The additional appointment simply gives me another opportunity to fight and argue due to fear. We are not suddenly going to see each other, hug, and her tell me something wonderful, allowing me to go home and get on with my old life. She has been frank from day one. There is evidence indicating grades 2 and 4 of the type of tumour I have respond well to PCV chemo. I have a grade 3 so logically...... and actually the majority of it is grade 2..... so the science is there. She said from the start that being offered chemo was a good thing because it was more treatment; it was more they thought would help. 

I said from the start that I was one of the lucky ones. A treatment plan. No timescales. I need to go back and talk to that girl! I'll always find it hard to trust the experts/ authority..... I'll often be the stone in their shoe....... I've no idea why or where it came from. But I also know that there comes a time to trust, as hard as that might be. 

I wish I had a better rapport with my consultant but the reality is that we don't need to be friends. The insecure part of us wants everyone to like us. Wants constant reassurance. The confident part of us knows it makes no difference to the outcome. That we need to trust the experts, whether there's some rare bond or not. Unfortunately a serious illness and treatment over an extended period can give the confident part of us a bit of a kicking....... Sometimes it takes friends and family to remind us it's still in you. 

So as of today I'm keeping my chemo start date the same. 4th July. Independence Day. Can't guarantee no tears, but can guarantee my ability to go through with it. 

By the time I finish treatment and recovery I'll probably have lost at least 2 years of my life. Many just lose their life. As I think I asked in a previous blog.... family and friends who have dragged me through this, buckle up...... navigators required!! Xxx

Cry me a river

I thought the tears were out yesterday, but it seems there were plenty more still in there. Today's tsunami was set off by someone from the hospital, ringing to speak to me further about chemo starting. I feel bad for not listening to her properly the first time she spoke to me, and her kindness and patience made the tears even worse! I also still find it hard not to be embarrassed by the meltdowns. It becomes a cycle - I'm sad, I'm embarrassed, I'm more sad! Tears, tears and more tears. 

I know what everyone says is true and that I need to stop beating myself up for getting upset. That tears are ok and a necessary part of this whole thing. I have to keep telling myself that. I write honestly about it in a bid to admit to myself and to others that crying doesn't mean weak..... not in this sort of situation. It's just a bit difficult to allow yourself to do it shamelessly when you're not generally a 'crier'......  Well the truth is.... my name's Tricia and sometimes I cry my eyes out!

What I'm absolutely determined of is that I won't get myself stressed out and hinder my healing just because I'm fighting against normal emotions. So today was kind of a day of tears on and off. One thing that's definitely true is that getting myself annoyed, combined with tiredness (which crying tends to cause!), brings on absence seizures. I've had a couple of big ones the last few days and I really hadn't been having them, certainly not of any note.  Like any illness, you have to manage bits yourself. 

Tonight's blog is a very selfish one. I'm reminding myself it's ok to have a good cry. I'm admitting it publicly so that I can't pretend I'm always Miss Strong all the time, despite what I might try to let on. And it's also to remind myself of my continued amazing support and the reasons why I can do this next bit. I can and will do it because those who know me best have complete faith in me. My poor sister has spent hours on the phone to me, settling me. Hubby has listened to me and let me cry, even though it must be hard for him to watch. And as usual wonderful friends have made me laugh and just given me wee boosts. I know we shouldn't rely on others to build us up, but sometimes we have to. Confidence goes and we need reminded of who we are. I've been reminded by family, close friends and new friends that I'm strong and can do whatever needs done. I get annoyed with myself that I need people to tell me that..... but I know my confidence won't be away for long, and have readily accepted the validation today.

 So a few tears are ok. The soft, fluffy Trish might be alien to some, but she was always in there! Close friends knew her, but maybe not too many. 

This stage is no different to before surgery and before radio. I've got time to prepare for the next stage. It'll be a physical and emotional challenge.... but one I've risen to before. Boo hoo but gggrrrr too! Xxx

Independence Day

Today I received a letter. I'd been enjoying a forest walk followed by salad sandwiches with an old (in time known, not years!) friend, so the arrival of the post went largely unnoticed. There was one brown envelope though..... I didn't like the look of it....... I opened it just as my friend received a phone call that necessitated her departure..... lucky escape for her!!  

The letter was an appt for oncology on 4th July. Honestly, I didn't really understand what it was for..... so I rang and asked........ they confirmed this was for my first chemo treatment. What?? I promptly fell apart. Surely I should've had a review appt after radio before we leap into chemo?? In hindsight, I think my SPOC did try to warn me this would happen due to holidays, but i hadn't really absorbed what she was telling me. A common issue for me now. A wee satellite delay. I need a bit of space to think about what I'm being told. Time to absorb it. Never was good at thinking on my feet..... far worse now!  

So it came as a real shock. My terror came out in anger, as it sometimes can...... cue a phone call to my consultant's secretary, demanding to know what was going on and why I hadn't seen her. (Alongside tears to my sister as always). She was fantastic..... went and got some information for me and rang me back. Patiently explained it to me and treated me with kindness. In the meantime my sister was away making phone calls too and got back even more information. I'd be lying if I said I don't find some of this stuff frustrating. It often feels so routine..... but it's my whole life. Equally though, I need to strengthen up a bit more emotionally. I have..... mostly........ but every so often I have a wee meltdown. In my defence, I've had 5 months of fairly heavy stuff going on..... and I have an ear infection that's making me miserable and I'm horribly tired a lot of the time. Id imagine I come across as horribly weak to many of those I've met in the hospital....... but I know many have also seen the other side that comes out once I've had a little time to pull out the positives and get myself settled down yet geared up.

To cut a very long story short, it's likely I will start chemo on 4th July. On that day I go up for what appears to be a type of induction day..... I'll be checked over physically, blood tests taken etc, will talk to my doctor and other people who can help me with the mental and physical impacts. Given time to think, some sister hand holding and phone calls (where would I be without her???), and some talking things through, I realise this was not bad news.  It's not news...... I knew I was going for chemo next. It was just scary at the time and sometimes things aren't fully explained..... or maybe they are and I just don't quite take it in...... I find stress or tiredness can also have a major impact on my ability to concentrate, so it can be really difficult for me to take in information about something I'm scared of. Given time to think, cry and settle myself I'll always come back fighting...... but I'm not sure consultants always see that bit....... they see the quivering and confused wreck, blubbering. 

Starting chemo so soon I guess can only be a good thing...... sooner it starts, sooner it ends. Sometimes it feels like you don't get a chance to recover from one thing when the next thing hits....... but if you knew you were going to receive 3 punches in the face then you'd rather get them quick wouldn't you? You wouldn't want them months or years apart. I've come too far to roll over now, but of course it's frightening. 9 months feels like a hideously long time...... but I know I'm lucky to be one of the people who's likely to get a better outcome by doing this too.  I have to put my trust in the experts again..... I found that easier with a surgeon I genuinely liked.  But yet again I been reassured that my consultant might seem very clinical, but is very good and there is another side that's not seen by patients. Yet again I remember that we don't have to be friends. It'd be lovely if the world got along and we all held hands and dried each other's tears, but guess what??....... it takes all sorts, and you actually probably wouldn't really want your oncologist to hold your hand all the time. I'd like us to have a better rapport, but that might come through time...... two strong minded women, sure what could go wrong?? It's amazing we're not best mates......hmmmm..... sure she'll love me once she gets to know me...... 

So anyway, 4th July. Independence Day. As two people have pointed out to me...... the start of me getting my in independence back!. Actually, not even the start. I'm already two thirds of the way through treatment. Like everyone else battling serious illness, I'm tired and can get overwhelmed. But I remain astounded by the number of good people around me, the strength  they give me, and the body's ability to pick itself back up mentally and physically.

Not a great afternoon. Lots of tears. Lots of stress. Two 'emergency Calm' meditations! But always in the knowledge (albeit way in the back of my mind) that we'll deal with this bit, just as we have the bits before. Nobody said it was easy but I'm not letting myself, my family or all the other people that have supported me from day one, down. We can do this.  This time next year we'll be looking back and won't even remember half of it!! Who knows, this time next year we could be millionaires Rodney..... Xxx

(Backup) Real life stories are so much better than fiction....

GPs today to try and get hearing sorted. Seems I have fluid in there..... I knew that already, but nice to get it confirmed and get a treatment. Along with a course of antibiotics, I was given a pack of balloon things to try and inflate by breathing into them through my nose...... all that did was make me feel really dizzy, and inflation rate was zero! Hopeful it'll clear by itself and with the help of the antibiotics, as being practically deaf in one ear is surprisingly annoying. Plus I've no idea if I'm whispering or shouting..... which can be an issue!! And it's hot and sore..... 

More interesting.... when I sat in the waiting room an elderly lady sat down beside me. She apologised for the 'state' of her face..... she'd had a bad fall. Her daughter arrived and she used to teach me PE..... plus my dad had been talking about her last week, for no apparent reason. I told her she used to teach me.... luckily she prefers the 'characters' because 'they're the ones you remember!' apparently...... A conversation was struck up and guess what she had 18 years ago??? I swear you're nobody if you haven't had a brain tumour..... and she didn't even have it pulled out through her nose...... she was full on brain surgery like me!! Thankfully hers was benign, but it's still yet another person I've met with a positive story. 

Opticians this afternoon to discover the prescription for my lenses and glasses has changed by a full point in my right eye. If I'm reading the prescription right, it's improved! That doesn't seem right, but who knows?? No reason why I can't develop more than one super power....... 

I also had the pleasure of spending time with a dear friend as well as my son today too. Not much more enjoyable than that! And I broke our internet, so everything is getting right back to normal! Xxx

Farewell Donegal.... miss you already

Last nights B&B was superb. The Glen House, just outside Clonmany........ I can heartily recommend. It comes complete with its own bridge over to the path to the waterfall....... idylllic! 

We shared the B&B with the Ladies Chinese Taipei Tug of War team, who were over for training before the World Games in Poland. I wish them well in their competition! 

Yesterday, whilst visiting Malin Head, we had passed a group of cyclists cycling in aid of Marie Curie. Ever since seeing them I'd felt bad for not stopping. We saw them right at the start of their ride and I kept thinking we should've stopped, sponsored them and spurred them on. This morning it was still bugging me, so I googled and found a JustGiving  page for one of them. They're cycling from Malin to Mizen in Cork..... impressive. I sponsored the random bloke I'd found and then had a moment that caused my heart to race....... There were two men in cycling gear, sitting in the breakfast room to our left and one of their phones buzzed....... my heart leapt! No way??!! I looked at him and at the photo on the Just Giving page...... showing it to hubby, my eyes like saucers, I said "Did I just sponsor him?? Seriously?? Tell me that couldn't have happened!"....... somewhat unfortunately it hadn't....... it wasn't the same guy....... my eyesight isn't great at the moment and the guy in the photo really didn't look like the guy in the breakfast room. Plus, of course, the more obvious fact that the guy in the breakfast room was the tug of war team's coach and didn't speak a word of English. How terribly disappointing!  

I tell the story simply because it made us laugh...... and that's healing in itself!  I was so entertained by it that I told the B&B owner..... she then told us some stories..... including the one about her sister who beat leukaemia 10 years ago..... exactly the sort of story I love to hear! 

After our waterfall walk, we headed down to a stone fort called the Grianan of Aileach. The views!! Unfortunately I couldn't fully enjoy due to a bit of dizziness and also a very strong wind. My eyesight is a little off too...... just seems to take a moment to focus. This morning I opened my eyes and everything was green...... just for a split second, but doesn't seem like a good thing........ I'm sure it's tiredness combined with a very bright room and sleeping in a green t-shirt...... I've made an appt with optician for tomorrow to get it checked. I'm still having problems with one ear too..... it just feels blocked and I can't really hear properly. 

I guess you can't expect to be zapped in the head for 6 weeks and then not have some weirdness afterwards..... they do warn you that side effects usually get worse after you finish treatment...... I think it's important to get things checked, however I wasn't really even recovered from surgery when the radio started, so progress will take a bit of time...... I'm exhausted, although I'm not sure how much of that is due to the wonderful Donegal air and probably too much walking, or the radio.....! Dealing with physical stuff is undoubtedly a lot easier when you're in a relaxed, Donegal state of mind! Xxx

Further Donegal quirkiness....

Well the artist is not the son of the beekeeper...... because the beekeeper is a priest. So I was told by the woman who runs the tweed hat shop...... who we woke up at 10am. She'd been awake at 5am, got up, had toast and then fallen asleep again..... Good for her! I felt bad for waking her...... especially when neither of us bought tweed hats! Although she didn't seem to mind being wakened and was full of chat.

Donegal is definitely even quirkier than me..... or at least equally so! Completely unable to go past the 'Curiosity Shop' I ended up talking to yet another wonderful character who told me a story about the filming of Star Wars and a chance meeting with Mark Hamil, who the storyteller didn't know because he's never watched Star Wars ("Sure why would I be watching that??"). The man telling the story also said "Its not nosiness, it's curiosity"....... something I had said to hubby just this morning! This was undoubtedly my kind of guy.....

I received a hug and was given some cards by a girl running a small mobile gift shop, who also told me to visit a holy well that she said her priest says is more powerful than Lourdes. I went, and left one of her lovely cards there. I've no idea what I believe or don't believe, but I'm completely certain that there are certain individuals that can make you feel very settled and calm. It's the same of places. There's a reason why some places are attached to stories of spirituality and/or religion....... they're places of calm. Tales of healing may even be scientifically linked to environmental factors. Who knows? I'm completely open minded. Calm and quiet works great for me, regardless of any beliefs.

Night two's B&B (picked by me!) is fabulous! Night one was excellent too, but in a different way. Tonight's looks like it would fit perfectly into a Pride and Prejudice set...... plus there's a bridge in the grounds that takes you to a waterfall. That was the reason I picked it and we're not disappointed so far! 

Xxx

Donegal.....

As a reward for finishing radio,hubby and I had booked a night in Donegal. At the last minute we decided to extend it to 2 nights, staying last night and tonight. 

I've never spent a huge amount of time in Donegal, but I'm learning that no matter how weird you're feeling, in Donegal there will always be someone who actually IS weirder! It's full of characters. Both locals and visitors. I'm tempted to stay...... it seems like the sort of place I'd fit in perfectly!

Yesterday I was offered a live, freshly caught lobster...... until the fella's mum apologised and said she'd just spoken to his granny and she wanted it! I'm not sure the hotel allows pets anyway.......

I spoke to an artist who was standing in a field, drawing a cottage. He was quite serious...... his art was definitely not for fun!!

Then, as we were eating dinner, I watched a bee keeper load the boot of his car up with combs from the hive and then drive off in his full beekeeper outfit. We couldn't decide if this was a great idea (he wouldn't get stung while driving) or a terrible idea (can you see through that mesh??) The former must've been true because he returned in one piece. Interestingly the artist then arrived with a small boy...... I suspect the beekeeper is the artist's dad.

This morning over breakfast we listened to a frightfully posh man describe his exploits rowing at Henley. His first sculling victory was at Coleraine in 1966 apparently...... Hubby went to the toilet, giving me a look as he left, saying "Don't". I smiled and said "When you get back, I'll be talking to them!" I sat quietly, until it became clear they were sailing to Dublin and were discussing whether to stop in Glenarm or Larne. It was my civic responsibility to jump in, telling them Larne is ferries and grey buildings, whereas Glenarm is quite pretty. They seemed genuinely appreciative of the tip! If I'd read of a boat of very posh people being ploughed down by the P&O express I'd never have forgiven myself!! 

Donegal seems to be just the place for me! As I sat giggling this morning (following the ferry conversation with the sailors), I had a chat with hubby and was worried slightly that I was starting to do things that might be considered a little odd.... We agreed I was always perfectly capable of doing the things I now do, and often did. Serious illness of any type just switches off a filter I think..... you longer care so much what people think of you. Plus I miss the human interaction from work, making me even more guilty of talking to strangers...... hubby reminded me I always did that, it's just more frequent now!

Maybe it's more a case of getting back to my old self.......!! Xxx

Feeling loved

This morning there was a coffee morning for me at work.  Money raised (which was a hugely generous amount) is going to charities. What an organisation I work in! Full of wonderful people. The odd d*ckhead too of course.... but very much in the minority from my experience!!  It was great to see people; many of whom have been in regular contact but who I haven't seen face to face. I owed an awful lot of hugs and it felt so good to deliver them and show everyone I'm ok.  

I'm exhausted but feeling very loved. The goodness of people continues to astound me. Xxx

Stop making me cry!!

Everyone seems intent on making me cry today! Thankfully they've largely been good tears........ 

I came home from my last radio treatment to a box of balloons from my wonderful sister. A card saying she's proud to be my sister made me cry and laugh at the same time..... sorry, who's the hero here?? Who's been strong?? You lead and I will try to follow......

A dear friend even booked a Tesco delivery of a meal to take a bit of pressure off..... how do you guys think of this stuff??

Hubby delivered some words of admiration that brought more tears.... why does everyone keep putting all the credit on me, when they've done so much??

I also opened a gorgeous bag of goodies, including champagne, bath goodies and a beautiful scarf from my fellow ward mate and radio buddy.  It was the card that got me....... we've gone through so much.... but we're doing it together. That sort of bond is strong and we will continue to support each other until we realise we've won! At that point we will go on a spa break and give ourselves a massive pat on the back!! No two journeys are the same, however in terms of treatment ours have been very close. Surgery, radio........ and now chemotherapy. 

That little gem brought slightly different tears.... however, they're cried now. Putting it in a good light (because to fail to do so is unhelpful and stupid)...... I will start chemo probably in July. It'll be for 9 months total, however it's 6 week cycles. So I'll go up every 6 weeks, they'll do the horrible stuff in a day, and then I'll go home and take tablets for 5 days, then I'll stop for 5 weeks again. Apparently it's a 'very well tolerated' type of chemo and research would suggest it'll further back up the work done through surgery and radio. I won't lose my hair (though I can't imagine the big chunks missing from radio growing back....... the pirate/Amish could be staying for a while). I'm nothing short of terrified, I'd be lying if I said I wasn't, but I didn't come this far to just roll over. I will do whatever I have to do to help myself. My biggest fears are probably just feeling like crap and also not being able to do anything. Lying in my bed all day, feeling sick, holds no appeal to me physically or especially mentally. I have an information leaflet about it all...... which I will read this time....... just not today! It's been a busy enough day and I'm wrecked. I swear they have given me an extra blast to finish me off!! I'm more tired than ever and my head is thumping. Just in a kind of a 'it's been a really long and emotional day' kind of way! I did manage to squeeze in a quick cuppa with a colleague and friend, which was really enjoyable. Now I'm just lying in my bed, relaxing, reading, before being mindful and drifting off to sleep with my Calm app's sleep stories! 

Previously when I've received important treatment information I've completely clammed up. Refused to talk about it, cried my tears in private. That's not a healthy thing to do. Now I talk about it..... a bit....... definitely no horror stories please! No comparisons to dead people! But encouragement and positive stories are fine. I can talk about it, in limited and positive bursts. I might cry. Just getting emotions out. Not tears of despair, just acknowledgement that this is a bit crap and I'm tired. Truthfully I've already met a few female chemo patients around my age and they have all been very reassuring.

So I've probably around 5 weeks break. I was worried I'd miss radio and the routine. Now I've decided I should enjoy the time to rest up. Similar to prior to surgery, I've got 5 weeks to get myself tour fit! Physically and mentally. There will be ongoing walking, meditating, aromatherapy/reflexology/reiki, reading and spending time with positive people. I've the advantage of knowing where I've gone wrong in the past, particularly with managing my emotional wellbeing, and having the knowledge of how to make sure I don't make the same mistakes again. 

To those who continue to hold me up with laughter, strength, emotional and practical support...... buckle up! We've a bit further to go and I need you as my navigators! Xxxx

Radio's last laugh.....

With two treatments left, radio has decided to remind me who's boss...... it has, of course, made an error. I'm always boss, even if in the past I've sometimes forgotten!.....  It's not too bad but a lot of niggly side effects have developed.....

My skin is itchy, especially my face...... I've been using Aveeno for irritated skin for this on my body since the start and it's been very effective. Now I've had to use a bit on my face. It seems to have worked there too. Mild and gentle on a mild and gentle girl.... haha....

My mouth and throat are really dry and sore. We've described it as mouthitis!..... I'm trying to combat this by eating soft foods, drinking plenty of water, humidifier in the bedroom and swirling with coconut oil......... I know...... complete hippy!! The coconut oil is sitting on the shelf beside the Manuka honey....... I will talk to the medical folk tomorrow, but the solutions pretty much always involve pills and I'm taking enough of them. I also have awful heartburn again (probably from the coconut oil or the overload of eggs I've eaten today!) 

My skin just burns. Entry and exit wounds are clearly defined now. Plus the warm weather makes my headscarved head sooooo itchy!! 

I'm physically very tired too. My legs just didn't feel strong today. I was a little surprised by this as I've been doing plenty of walking and worked hard to keep my strength up. Well, imagine how I'd feel if I hadn't done that...... my wee legs wouldn't be carrying me at this stage! As it is, it's a temporary tiredness and I'll keep exercising gently. I still managed the beach today.... just slowly.

So lots of very minor annoyances that I know I should be grateful for only getting now and for the fact that they really are minor. People get stuff like this in week 3 and then have to bear another 3 weeks of treatment....... I've got 2 days to go. I know side effects can last for a while,  but I know I can deal with that. I also know that it changes with each day. Tomorrow I could very easily wake up with strong legs, a normal mouth and throat, and settled skin...... so long as I maintain the balance of gentle exercise, healthy eating, positivity, fight yet calmness, then I know I can start to enjoy daily progress after Tuesday. The prospect of chemo and scans etc remains exactly that...... a prospect. The results of which are unknown and worries for the future. In the meantime, with the help of my reiki guru and mindfulness apps and enlightenment books, I'll just remain calmly in the present...... What a changed girl I am!! 

I continue to meet wonderful people. Some old friends, some just seemingly thrown into my path.  And I selfishly absorb all their goodness (though I do try to pay some of it forward too, so that makes it ok, doesn't it??)   Xxx

Quiet.....? Me......?.......

So apparently I've been quiet...... not to anyone in my vicinity, but on here it's been a day or two....... I hadn't really realised until my phone started to light up yesterday and today, asking how things were going etc. Which is really nice. Makes me feel very loved! I'm actually doing pretty good, all things considered. Ive 3 more radiotherapy treatments to go (finish up on Tuesday!) which I find almost unbelievable! It's only when I look back that I realise how far my family, friends and I have come...... In many ways the 6 weeks have flown. I will miss my bus buddies and, even more so, my radio buddies. Quite a few have finished now. I'll miss them but, similar to the Ward of Winners, we'll stay in touch. A little unofficial help group! 

On my kitchen table are three bags full of goodies given to me by radio buddies at various times...... one for single Figures Day, one just to keep me up, and one for Final Radio Day (I haven't looked in that one..... it'll be a treat for when I get back on Tuesday!) Spoilt! 

I spent Tuesday and Wednesday with my sister in a nice Belfast hotel. What could be better? I didn't get to see too many people this time as the tiredness had hit a bit, but I did get some lovely walks and the company of my sister (who you all already know is the best ever!) God love her I'm sure I kept her awake all night as I was having a pretty horrific nightmare..... I dreamt I was having an absence seizure that I felt sure was going to turn into a major seizure. I woke sweating, convinced it was true. Then I realised I wasn't on the Lagan Towpath and one of my radio buddies in her 70s wasn't beside me...... if that bit wasn't true then the rest isn't either I told myself (whilst still slightly worried that parts of it were true....) I then realised I was lying on my side completely rigidly and that my arm was almost asleep from being lain on..... so not so much a seizure as a dead arm! Idiot!! The good bit for me was that I could distinguish that and was able to calm myself down and go back to sleep. 6 weeks ago I wouldn't have been able to do that..... I'd have been sitting up, shaking like a leaf, having a full blown panic attack and being sure of my imminent death...... Not now. Now I can remind myself I'm grand, breathe deeply and go back to sleep the same way we all do after having a nightmare. 

In terms of side effects I guess I'm still probably pretty lucky compared to some. Tired without a doubt, but hubby and I still go for short walks every morning and evening. It helps, even more so on the days I really can't be bothered! I get up early, keep going all day, but then rest up after dinner. Just relaxing, usually reading a book. I'd recommend Chicken Soup for the Soul..... there's a whole series of them, but I just picked up the original one from a charity shop. £2.49 well spent! Easy read and very positive. 

The newest side effect is what feels like fluid in my ear..... I can't always hear properly and I'm getting some ringing etc. Unpleasant but better than some of the stuff others experience. I still get the odd wave of nausea and I'm sometimes a bit dizzy, but moving slowly helps with that! No sudden movements... Headaches stop me doing that anyway! My skin is also now painful. It's like sunburn and just hurts. You're given cream for it and I've only 3 zaps to go so I'm sure it'll be grand. I've seen others with really angry looking patches....... making me realise what a drama queen I'm being over my wee red bits! I have become appalling with placing people..... I either ask strangers if we went to school together, or I walk past someone I met an hour previous! I have to finish tasks from start to finish in one go or it just won't get done. If I get distracted at all then forget it! I've learnt to just laugh at these things now..... hardly the worst things that could happen. When I think back to my time prior to surgery when I was wondering how I'd feel if I was left paralysed down one side, a few oddities that probably existed before seem completely acceptable to me! 

As usual, serendipitous things happen on a daily basis. A priest told me yesterday that in his line of work they call that provenance. Another good word, though serendipity remains my favourite simply for how it sounds! Whatever it is, it's pretty incredible when stars align or seemingly unrelated things come together in a completely inexplicable way! Never fails to make me smile..... and it happens to me every single day without fail! I've so many examples I could write a book.

Hippy Trish is definitely staying, but I'm now working towards very gently dipping a toe back into the real world. Everything has been about my illness, every emotion or pain overanalysed....... Now I need to start remembering there's another world going on that doesn't centre around me! I've no interest in jumping back in and being exactly how I was before....... I don't want any stress or worry, i don't want to be short tempered or sometimes a bit crabbit. It's about me going back to real life whilst maintaining the new happy stress free me that takes time to look around them. I won't be able to avoid the rush and demands of the world forever, but now I can put the newfound skills I've learnt to ensure I don't get dragged in. So yes there'll be bills to pay and a house to run, but I will do that in a relaxed way. I'll not overthink it all or jump ahead in order to catastrophise! I'll just think about what needs done and then sort it out and forget about it. I'll have to master it because there's going to be some intense times ahead. I'll soon hear if chemo is recommended next. I'll also have around a 3 month wait for scans after radio ends. That's going to be a nerve wracking time if I let it be. And the fact remains that even if the scan results are completely amazing (which I, of course, think they will be!)  I'm going to have a lot of scans ahead of me. You can't live a happy, healthy life if you have underlying worry bubbling in you all the time. We'll have to learn to not think about scans until we have to and then deal with each one as it comes. It'll be the only way. Plus I remain positive that a healthy lifestyle, the right attitude, living a decent life and the help of a strong support network will give me the best outcomes. 

I have a couple of serendipitous stories that I'm desperate to tell but they'd identify people so I'll keep them to myself, while smiling broadly. Xxxx