There's no place like home......

How good does it feel to be home?? Very, very good! I know I've a lot of work ahead. It'll be a bit like it was when I came home from causeway hospital and when I first went up to RVH. I have to learn how to do everything again. Push myself, but not too hard.  Reduction in steroid meds again too, with further reduction next week. Yay! Still have to take them, along with anti seizure meds, but theyre nowhere near as heavy now.  My diagnosis remains fairly terrifying, but expected. Average grade 3 tumour but good chunk removed. The bit of 'spongy' removed was described to me by surgeon as 'big enough to fit my fist into'...... gotta be good to get that out! Plus other bits of 'angry peas' removed too. Happy days. Excellent job done by an amazing surgeon. One who took no crap from me but also had the skills to pull off what she promised she would. A bloomin genius!!  Next step is referral to oncology. Likely to be radiotherapy. We'll see. Stitches out next week too. That'll be good. It's getting itchy! Which means it's healing..... I don't want those stitches to knit in there....... I've met the nurse who'll remove them and she seemed lovely and very efficient. Apparently she's the stitch removal queen so I'll put my trust in her! Ridiculous the things you fixate on...... cut bits of my brain out but don't dare try to take a stitch out or put a cannula in! What a wimp 🙄 I do feel a bit like a pin cushion though..... my wee veins are feeling very sad 🤔 They are objecting to pretty much everything now! Not that I allowed anything to be put through them anyway. Not paracetamol, not even fluids. I can drink water, I don't need stuff pumped into me! I'm so happy to be home. In my own bed. Though I miss my Ward of Winners. Inspirational and so brave. They got me through the past 2 weeks - they showed me what I was capable of. Them and my wonderful sister. I miss her too but she doesn't live here and she has a job!! She's coming back at the weekend and I'm excited at the thought of seeing her again. Best sister ever!  I've got a series of other appts with people like Occupational Therapy, physio etc but generally everything seems good. I'm definitely ok to be home alone. I still have my elder care alarm (that I keep losing!). I might need a few grab rails fitted etc, but sure that'll just make the house ready for our later years!! I'm a bit vulnerable to burns etc as my reactions can be very slow. So I need a bit of monitoring, but I also need to do stuff on my own or I won't rebuild the Neuro pathways. So it's back to slow starts in the morning, showering on my own, making lunch, light housework, walks etc. I can be in public but I generally don't chose to be. I can be very odd about visitors. Be assured, it's not personal. I just get s but overstimulated and can get very tired. Plus I can get a bit overwhelmed. I cry quite often now...... horrible at the time, but definitely cathartic. I always feel better afterwards. So I just let the tears flow now. I sleep now thanks to my miracle priest! A man who helped me at a time when I genuinely thought I'd never sleep again. He's wonderful and I hope to go and visit him soon. I owe him so much. s I owe so many of you! Thanks again for all the lovely photos and all the funny texts/emails/whatsapps. They are the last thing I look at before I go to sleep and the first thing I look at when I wake up. They keep up my positivity and have stopped me from being beaten.  We had a few new arrivals to the Ward of Winners over the past few days. Good to see people moving on and getting home or onto the next stage of their journeys. They included one girl who seems to be on a similar journey to me. If I can provide even the slightest reassurance to her and/or her family then I will know I've achieved something. She's lovely and I know exactly how she must be feeling. She's had her first surgery and come through it well. I was delighted to see her back on the ward. I know she'll be ok, because I know I will be. Someday I've no doubt we'll share a cup of tea and help each other get over our experience together as well as celebrate our tenacity! She's as strong as an ocean and I have so much confidence in her ability to get through this. It's frightening for anyone, but the strong can fight through. She's a fighter - I can see it in her.  If anyone has any healthy eating advice then please send it to me! Im being told to eat plenty of protein and brightly coloured vegetables..... kind of what my body has been craving anyway! The other day for lunch I had sweet and sour with mashed potato, broccoli and carrot/parsnip..... the nurse laughed but then admitted I was the third person to order it! The body knows what it needs it seems......... I eat salad with basically every meal now too and have gone back to full fat milk (soothes a stomach that's unhappy from medications!) I've put on a few pounds but actually my weight isn't bad. I've no idea what it was before but it's not awful now. I'll worry about a few extra pounds at a later date...... hardly seems too important at the moment! One thing at a time...... to be honest I'd probably be more worried if I was losing weight, rather than gaining a bit...... 

Tie a yellow ribbon....

Right, im ready for home! Last night I was moved into my own side room. I didn't want to go. Leave the Ward of Winners?? I think not...... I attempted my usual negotiations..... even trying to find a patient who might want their own room with en suite...... unsuccessfully. Actually it turned out ok. I had a visitor from work so it was great to be able to chat about stuff privately. All helping me feel like a normal person again. Then I slept like a log (I can do that now!) Now I'm awake and looking forward to getting up and dressed, ready for home. I know it'll probably be s difficult day again though. There'll be scan results and pathology results and that's always hard to listen to. But the Big Man and I will listen, take notes, probably have a good cry, and then head home where I will re-learn how to do everything again. Which I know I can do. Yesterday I also met with the Neuro psychologist. He ran me through a series of tests. I think he was testing my ability to form new memories..... I haven't read too much about surgery on the temporal lobe, but I know it can affect your memory. I focussed really hard on the tests. It felt important that I do well. Which I did, I think. I was slow at some bits, but I guess that's to be expected. I pushed hard though. At one stage he told me, you were a little slower at that one but it's ok. If you'd done it in *whatever* time you'd have been in the top 1%. I said 'Try it again'...... I'm damned sure I'm not being beaten by a list of random items. If he's reading this now......... candle, sugar, artist, hotel, sandwich....... We did lots of other tests like the one where you have to read out colours when they're in words or the colour of the text. Plus number tests. I'm rubbish at them - always read numbers back to front. I frequently can't even read a watch ffs! I'll read 11am as 1pm etc, so the number ones were frustrating for me. Plus I was putting myself under pressure to do well. I focussed and I think I did ok. He said he'll make sure I get the results as it was clear to him I was being competitive about them. Too right I was!! This is my life we're talking about! Competitive doesn't even come into it. So I left my Ward of Winners and cake to my wee en suite. Had a great chat, even walking my visitor to the front door and finding my way back to my ward by walking back up the stairs. No bother. Then I settled down early, knowing a good night's sleep would be a good idea.  I've woken this morning motivated and ready for home. Feeling fairly well refreshed and looking forward to putting on 'outdoor' clothes! Never thought I'd be so excited to get on a pair of jogging bottoms..... there's only so long you can wear pyjamas. M TiVo is about tape and stitches removal, although one ofte nurses thinks they may be dissolvable..... I still think that's optimistic, but it'd be great if it was right. Stupid the things you get nervous about. Cut my head open twice but don't try and take blood, put in s cannula or remove stitches! I had my cannulas removed the other day. God luck to anyone who ever wants to put them back in! I said I'd wear them forever. Apparently that's an infection risk and not doable...... fair enough, but they are hateful to get put in and I won't do it easily again. Anyway, so home I go. Hopefully with some decent news and no stitches in my head. I'll have to re-build all my Neuro pathways again. Making tea, getting showered, light housework etc.... and I'll do it all no bother. Thanks to my Support Team. I'll probably drive my family mad in the process, but they're very patient. After 2 weeks I finally let my sister go home at the weekend. Truthfully I'd have kept her here forever but I have to remember she lives in Manchester and has a job! She's not my full time carer, though she's the best ever. Better than any trained nurse, physio, a wonderful showerer and the patience of a saint. I couldn't have got through any of this without her. My absolute rock. The rest of the Ward of Winners miss her too - the nurses here are generally wonderful, but my sister is the best of all.  The Ward of Winners have exchanged contact details and I hope we're exchanging happy stories really soon. I missed them last night. Inspirational. Showed me I could do it. Helped me get on with it. Reassured me. All slightly different diagnosis but all fightingbto retrain our brains. And all succeeding. Troopers! I dreaded coming to RVH. Didn't want to come here. Now I'm so glad I did. Surrounded by inspirational people plus an incredible medical team. Apparently there was a documentary on awake surgery at RVH that you can watch on YouTube. Carried out by a different surgeon to mine, but same team. I haven't watched it, not do I intend to. But it's there if you're interested. I don't feel the need to watch - I've done it thanks! Maybe one day but I'll not be googling anytime soon. Amazing what these guys can do in their day job though. Makes answering letters seem a little simple by comparison!  Thanks again to everyone who's helped, of which there have been so many. I've lots more to write (sorry!) including things like a list of things you might need if coming in for this sort of surgery, things that'll become intolerable, things that'll seem really important, how family and friends can help etc. So the blog isn't quite finished yet. Plus I'll have to update frontiday, though that might not be today......'rvh news days' are family days. We need time to get our own heads around it and to get it all out of our systems. Maybe the news will be really good and we'll be singing from the rooftops! We'll see. Either way, we'll keep on . Dealing with it all with our Team, as we have from the start. Xxx

Aiming for home.....

I should get home on Tuesday. Excited about that. I'm going to have to re-learn everything again. All those neural pathways to be restored again..... our new 'normal'. But I did it the last time I went home and I've done it again in RVH so I know I can do it again. Trick is to trust myself, not rush myself, no stress or pressure, and ongoing unquestioning support of family and friends.

Today included sleeping until 10am (completely crediting my 'got to have' priest for that one), a lovely 'sister shower'..... I'm only allowed to wash a bit of my hair but it feels pretty amazing to get that bit cleaned up! My poor sister gets drenched in the process but continues to be selfless and uncomplaining. A couple of new entries into the Ward of Winners (two got discharged which was great to see!) A lovely visit and walk with my clever son - he'd been up to Queens Open Day today..... did I mention he's got offers for every course he applied for and got 3x As in his mocks?? So proud of him. No seizures of any description today - no grand mal, no facial, no absence.... epilepsy sorted at the moment, which is great news! I manage it in the rarest ways (as well as obviously with medication)  but it works for me. Keep the positivity Blasts coming - I look st them every evening and every morning. Plus the emails/ texts/ whatsapp s/ comments - all make me smile and help me immensely. I remain adament about my medications. I take what I need to but nothing else. And I won't take intravenously. Even fluids..... I can drink water...... there is nothing more disconcerting than having brain surgery , followed by intravenous fluids, and then fluid coming out of your nose..... you think it's brain fluid!! This is not s good place for anyone's head to be! I'll drink from a cup thanks. Plus intravenous paracetamol etc causes a taste...... as my epilepsy absence seizures are often preceded by a taste this is also not a good place for me to be....... Demanding?? Me?? Possibly s bit! I lecture the nurses and doctors about over prescribing, I refuse to comply over certain things (don't come near me trying to put a cannula in my arm....... it hurts and I'm not a pin cushion!) I give off about silly things like giving blood (six veins?? I think not) and night time stomach injections (to avoid clots), removal of brain drains. Some doctors and nurses are allowed near me, others I will beat off with a stick. I will hurl insults and not allow them near me. The best I've found are the ones who orientate you - tell you who they are and what they're going to do, but then just do it quickly and efficiently. I'm aware I sound hugely ungrateful. I don't mean to. I'm also aware it must sound ridiculous to have two craniotomies but then flip out over a blood test. I guess it's a control thing too, it's my body, I'll do whatever I need to do to fight this thing, but I'm not being butchered to get a cannula in! I had two removed this evening. Good luck to anyone that wants to put them back in. It might be an anaesthetic job..... though hopefully once I get out of hospitalg veins will improve a bit. They've been poked and prodded for 6 weeks and were never great to begin with. Maybe all the drugs will start to pump them up and I'll end up with ripping muscles and veins popping out all over the place! I'd be happy to just end up back to me. Although I'm not convinced I've changed so much. Still a control freak, still thran as anything, still a mix of positivity and happiness and cheekiness..... bit like all of us I suppose. Still my own personality.  I remain surrounded and grateful to my incredible Support Team. And completely inspired by my Ward of Winners. Each one facing their own issues but each one fighting every day. All helping each other. All rooting for each other. All celebrating each other's victories.  At the moment it looks like I will go home on Tuesday. I'm excited and nervous. It'll be hard to relearn everything all over again, but I know I can do it, no pressure, no stress, I've done it before and I'll do it again. With your help. The thing sI'm most nervous about now  are 

• Getting results of most recent scan. Although I know it'll show a big bit of spongy tumour removed and also some 'angry peas'. Any day of information tends to be scary and hard to absorb. It can just be too much to take in and usually ends in tears
• Getting the tape off wounds and stitches out. That's gotta hurt.....  I'm not looking guessed to it at all. I keep thinking maybe they'll be dissolving stitches but I'm diff that's optimistic. If it's staples a might be the biggest wimp ever seen!
• Just generally learning to be normal again. I know I can do it, but I want off these damned medications. I want back to myself, completely me.
• Any consideration of future surgery - the thought of it makes me feel sick.
• Dealing with anxiety, particularly after awake surgery. I've been regrrred for Neuro counselling.   Which seems like s great idea. I. Any imagine too many cons ghrougb that with no flashbacks. Although it seems my special priest offers the best counselling I could ever bzvd hoped  for, 
• Facing people again - I want to see everyone and thank you for what you've done for me, there are so many I want to sit down in front of you and show you what we've achieved together. But I'm embarrassed by what I've put everyone through. I'm angry that my body was weak and let me down. I'm angry and embarrassed at how many people have been dragged into this. I don't know how I bdgin to repay people. There are a few in particular that I just wouldn't know where to start. 

Rest assured we will sit down together. I will try to thank you, although I know I'll never be able to articulate it in a sensible way.  For now I will sleep. Restorative, healing sleep. I will have a quick look st my favourite positivity blast photos. Just because they make me smile. I'll settle down and think happy, positive thoughts. I'm likely to lie in...... sure it'll be Sunday after all! I'll enjoy another sister shower, get myself respectable and prepare for the next stage of the fight. Which I will win. Thanks to my Support Team. My cage.  I love you guys. Sincerely. ❤❤❤

Massive progress after healing sleep

Another massive day of progress after a full night's sleep, plenty of tears, and a blessing from my miracle worker priest. Incredible what a difference a day can make. I can now get up and use bathroom alone. Seems easy? Try brain injury and you'll realise what a challenge it can be....... That Neuro pathway is restored. I can also walk up the corridor alone, although I find it more fun to go with others! I can chat and often do..... I forget stuff, particularly days, but I don't sweat about it. I wear a watch and oriebtate mysekf by just asking/ reminding myself what day it is. No stress if I get it wrong. Doesn't really matter. My day still revolves largely around food..... I'm blaming the steroids god that, though thankfully I haven't gained huge amounts of weight. I've bigger fish to fry anyway - I'll worry about the brain first and then take a few pounds off after. Small price to pay! I still look a bit like frankensteuns minster, with wounds down the side of my facs (in front of ear) and up along head. they'll mostly be covered by my hair anyway and it's really a small price to pay.  My surgeon continues to give me far too much credit for her longest ever awake surgery. I'm in awe of her. She's a brain surgeon!! I think she's probably younger than me and she's a frickin brain surgeon!!  I continue to write because it helps me and hopefully night help others one day. There's loads more to be included. There may be a book in it...... not a best seller I wouldn't imagine...... fairly specific subject matter...... but hopefully something that could help anyone who experiences something similar. And that doesn't necessarily mean brain tumour. Anyone who has a stroke / aneurysm / MS, /motor neurone disease and a wealth of other conditions if the brain/spinal chord could find themselves in a similar situation. It can be really frightening and very disorientating. For them and fit their family and friends, if I can help explain that then I'd have achieved something pretty incredible with my life, wouldn't I?? It's something you could never explain without experiencing it.  My wonsedul sister also helped me shower today and even wash (part of) my hair. I was only allowed to wash the top over the this head wound, and the back, round to the wound in front of my ear. So a bit of a hash job, but it felt so good!! After I sat and brushed it with a babies brush for I'm sure an hour. I was like a wee mermaid. Or so I fella! I had another relaxing MEI scan. Scanners were fantastic as ever. Completely tolerant of my complete phobia of feeling anything in my veins, I can tolerate the noise of the scanner no problem, it's the dye going in that freaks me out. They offered complete reassurance by telling me what they were doing and telling me not to worry. Again I was in the company if Ed Sheehan..... again I have suggested the removal of Bloodstream from the playlist...... unfortunate choice.....  The Ward of Winners continues to inspire me. We've had two get home today. Both brave beyond belief, so proud to be part of their number. A nursing team that offer reassurance and look after us. I have a few favourites, though in general they've been great.  We've two newbies on the Ward of Winners now but we haven't really managed to introduce ourselves yet. We'll make sure we do tomorrow - they should feel reassured that they're on a ward of fighters. One where everyone helps and inspires each other. I've done lots of physio today too. I'm not allowed to hold my head to the left anymore. The muscle on my righ in front of eart is clearly sore but I need to start w deciding if to stop it stiffening up. Uncomfortable but necessary.  I'm managing the epilepsy well at the moment. I haven't had a grand lal since the night this all started (20Jan(, I have had a few facial seizures ;like being tazered to the face) but often skiers to be related to changes in steroids, and I can now pretty much manage absence seizures (that's what I use your positivity Blasts for so keep them coming!) some of you send me a wee positivity blast ever night and it's lovely. I look at them before I go to sleep Nz also when I wake up - knowing they'll prevent any absence seizures. Very important. Makes a huge difference to my day to day life. 

1. I continue to keep my meds as simple and as low dose as possible. I have to take some steroids and some anti seizure mssicatin, but I'm down to twice a day and I take as little as possible. Other thAn that it's paracetamol and ibruphen. That's it.  I frequently quote to doctors and nurses that we have an overprescribing privlsm in NI. That you're more likely to die from diazepam/temazpam than from heroin/ccajbs/ecstaty combined. Some of that is obviously illicit use and fake stuff bought in from places like China, but a large osrcentags is as a result of over prescribing. I maintain Dept of Health have a lot of work to do in this area. I'll continue to whine on about it because it's really important. It needs fixed. I understand certain drugs are needed and I know I take some to keep me safe. That's ok, but we shouldn't. We shouldn't be handing them out like sweets. Dept of Health have a lot of work to do on this. 

Finally I sleep!

After thinking I'd never sleep again, it seems Mass and a blessing from a proest has had the most curative power of anything so far. I will never again question why I feel a connection to certain people. If I think it's going to give me comfort then I'm running with it. I'll explain it to nobody and not question it at all. Yesterday evening a priest who I had met some months ago and felt a sudden need to see, blessed me. I begged to see him. It had to be him. I didn't question why and nobody else did either. He came here, he held my hand, he talked to me and he blessed me. I don't know why it gave me such comfort but it did. When he left I slept all night. The girl who thought she'd never sleep again. I've woken up this morning, am sitting up in bed, have been up to toilet, have taken al my meds, and feel able to work through today. I'll never forget awake surgery. I'm quite sure that stays with you forever. But I feel now that I can get over it. My head hurts. Obviously. But it's bearable. It's necessary. I remain adament that I will not take anything other than paracetamol and ibruprophen. No opiate based crap goes into my body. You are more likely to die in this country from taking diazepam or temzepam than heroin, cocaine and ecstasy put together. We have a problem with over prescribing and also a problem with illicit supply from places like China. Everyone be looks to police to sort out our drugs problem, but people don't realise there's a much bigger issue. That's why I won't allow diazepam anywhere near me. And you can forget about morphine too. That's just heroin. I'm not leaving hospital a drug addict. I won't be a statistic. I know that some drugs are needed to keep people alive. I accept that I've been given steroids etc because I've needed them. But my aim is to get off all of them as quickly as I can. Yes, my head hurts, but at least I know I'm 'me'. I'm not behaving in particular ways because I'm high. That's been very hard for me, particularly at the beginning of this whole thing. I know I have to take steroids and anti epilepsy meds and I do so obediently every day. But don't come near me with that other crap. Not ever. My feelings are very well known in here. Total diva. Or perhaps I just know my own mind - isn't that nice?? Isn't that the way I always was?? Take comfort from it. Its Trish being Trish. And you worry I won't beat this?? Wise up! I'm as thran as they come. Nothing's taking me down.  I love you guys. Every last one of you. For letting me be a thran cow. For not questioning any of it. For forming my cage and just riding the rollercoaster with me. Special people all around me. ❤❤

Tomorrow for Awake Surgery.....!

All set for tomorrow's surgery...... I'm not going to lie. I had a moment. A totally chicken moment. I forgot myself. Got scared. Decided to 'take my chances'. Told the surgeon I wasn't going to bother. That I'd just go home and see what happened. What a complete wimp! It took the surgeon, a nurse, my sister, my husband, some friends and some of my Team in the Ward of Winners to remind me that wasn't the deal...... There were insults. There were tears. There was no 'leap of faith'. No bravery. No courage. No positivity. No inspiration. No keeping of promises. Just a crabbit, scared, angry witch. Throwing insults like they're going out of fashion. Shameful.

I came round. I've signed the forms and will be taken for surgery early, probably around 08.30am. It could last until late afternoon. It'll be asleep/awake/asleep. The aim being to 'poke the peas' and see what would happen. To remove any that can be safely removed. To get a better understanding of what's going on. Also to remove more of spongy if possible. So there's a lot being done. I'm likely to be exhausted afterwards, plus I'll be recovering from anaesthetic. So it's likely to be Thursday before there's any real news. And even then we won't really know..... it could take a few days to establish how I'm doing. Plus it takes a week to get pathology on what's removed.

The next stage of the journey. I know dark humour is not always appreciated, but it's hard to see past the fact that tomorrow marks the start of 'Brain Tumour Awareness Month'....... surely that's s good omen???!! Surely??!!

So how am I? Honestly? Emotional. Terrified. Tempted to make a run for it. Weak. Angry. A rollercoaster of emotions. Though I've always said the most emotional days are followed by the biggest breakthroughs. I've let it out and I'm sure there'll be more years later on when Big Man comes in. 

In terms of today's achievements, I slept all night. I was up, washed, been for a walk, have spent time chatting with another patient. A patient who shared a ham sandwich, bag of tayto cheese and onion and some sports mix...... best meal ever!! 

My poor sister has patiently sat here basically all day. Doing all the things only a sister can do. And listening to my demands and tantrums. Unquestioning as she has been for 6 weeks now. Deserving of a reward I can never begin to pay.

I'm now in a better place. Still scared but I know I have to do this. I made promises. And I trust my surgeon. She is excellent and has been honest from the start. The truths have been hard to take. She still has that important mix of 'I can do this, trust me' with the humility of 'I'm not going to do anything stupid'. She's confident but not cocky. 

This is my leap of faith. The one I knew was coming. The one where you put your faith in the medical experts. 

You guys have formed my cage around me. I need to maintain my brace position. I'm doing that. This is the next stage of the journey. It can only be good. 

We can do this. I'm going to get a good night's sleep and I'm going to go in on the first day of March 2017, the beginning of brain tumour awareness month, and I'm going to take the next stage to kicking cancer's arse. With my Support Team at my side.

❤

Another day of progress in the land of confusion.......

I continue to progress, but I continue to be completely confused....

I awoke this morning and had no idea what day it was, whether I should wake up, go to sleep, eat, take meds...... my poor sister got a random message - What an I supposed to do?? She has been nothing short of incredible. My messages range from 'get me nightshirts that button at the front', through to 'I need you here. Now' and everything in between.

She doesn't question any of it. Just does whatever I ask. She comes into hospital. She does things only a sister can do. She washes me, she takes me for walks down the corridor. She helps me rebuild Neuro pathways.

I have developed relationships with doctors and nurses who I trust. And I have been a total cow to those of that I don't trust! I have two doctors that can put a cannula in quickly. As opposed to one who took six attempts to get blood out of a vein. Needless to say 'one vein's are welcome at my bedside, six veins will never be beside me again..... Diva? Possibly. But it's important.

I had another MRI scan today. I was totally relaxed, as I was last time. Ed Sheehan on massive headphones. Just breath and ignore the noises. Easy. Though I have suggested 'Bloodstream' should be removed from the playlist...... you're having dye put into your veins.....

I lost time today but my sister orientated me regularly. She was here all day. My gorgeous son came this evening and helped me walked up the corridor. I have banned everyone else. My face is black and blue, I have a massive wound on my head (covered with tape but it's there). I say some strange things. The thought of anyone seeing me like that causes me more stress than anything I could ever imagine. Bearing in mind my biggest daily battle remains coping with epilepsy. So I need to avoid anything that causes me upset or negative feeling. For me this is often the feelings of others. It's not anyone's fault and I'm so conscious I'm probably offending family and friends. I promise that is not my intent. What I'm doing is fighting. With every inch of me. So I stick with what helps me. I continue to try and write it up, to help me understand and to help you guys understand. And also because I honestly believe there is learning in all of this for others.

I remain content that I am in the right place for the best possible healing. I am surrounded by myWard. Of Winners. An amazing group of people. All with different diagnosis. Dealing with things in different ways. But all fighting. Helping each other. Inspiring each other. All learning new Neuro pathways like bosses!

Next surgery is due on Wednesday. I'll be ready. Im confident. My surgeon is excellent. She hasn't let me down before now. If my bus comes then my house is in order. But I don't believe my bus is coming.

You remain my cage. I appreciate everything everyone has done. More than I can ever describe. I continue to fight. I continue to enjoy all the photos and Positivity Blasts, the texts, the Whatsapps, the emails. I am surrounded by the best that humankind had to offer. Be proud of yourselves. You are inspirational.

Thank you, yet again. I hope one day to write this all up properly. And to use it to help others faced with similar challenges. I feel like this is the role I have been given. I want this whole thing to be over. I can't understand why this happened to us. I'm angry with my body. But I will continue to fight with your support.

I love you ❤ I can't wait to tell you each to your faces. I will feel no shame for random hugs. From day 1 I was drawn to particular people. Some obvious, some not so obvious. What I've learnt is that those natural 'drawn to' feelings are the most real feelings you'll ever feel. Don't question them. I will never question my feelings about anyone again.

I'll see you all soon. And for those who have asked...... I remain treated wit paracetamol and ibuprofen. I am violently opposed to any opiate based drug and will not take it. No morphine. No diazepam. My feelings are repeated daily. I don't need them. I don't want them. No codeine either - it doesn't agree with me.

Religion......

I remain completely unsure about religion. I'm not saved. But I'm completely  unoffended by anyone else's belief. No real change to be honest. Since this whole thing started I have been completely inundated with religion. No-one has forced it upon me. It has actually been a great comfort to me. I'll take it all! So far I'm aware of catholic masses being said for me, candles being lit, Mormon prayer circles, Protestant Christian prayer circles, Buddhist chanting. I have prayers said daily. I have made cards. I have prayers printed out and put in cards. I have one friend who delivers "unconventional prayers " each evening. I find comfort in all of this. It's not being shoved down my throat and all the prayers I've hear so far have simply been kindness, practical good vibes, and have come from the heart.
So religion and prayers are welcome. From all religions and all denominations. Keep them coming. It's all positivity. It's all appreciated.
Thank you to those who have taken the time to pray for my family and I. That's just kindness.
Not forgetting spirituality..... crystals..... I have a piece of jasper that is giving me great comfort due to the card that came with it and the explanation.
So yes to religion, yes to spirituality, yes to all good vibes. Yes to positivity, regardless of the source.
❤🙏🏻

Fighting on....... in the Ward of Winners

im trying so hard to keep documenting this. For myself, but also for others. It's often completely inexplicable. That makes in even more important to write it down. I feel like I owe it to anyone experiencing the same. Reassurance. Understanding.
Today started badly. I couldn't waken up. I just wanted to sleep. I felt like wveryone was pressuring me..... wake up, eat, go to sleep, take your tablets....... I was crabbit. Very crabbit!

I wanted to sleep but I knew that I wasn't fighting. I knew I was breaking my promises. I was just so tired. A bit defeated if I'm honest.

I don't think I woke properly until lunchtime and only with the help of my sister. It's important to sleep. But it's also important to rebuild Neuro pathways...... you do that by eating, walking, talking, fighting. My sister helps me do all those things. Other patients also make sure I do the right things.

Today another patient gave me soup. If she hadn't I probably ouldnt have eaten until teatime. Kindness, understanding, reassurance, fight.

My sister eventually got me eating, got me up out of bed, a walk with Big Man, a wash. All the things I have to do. All the things that are so difficult. I couldn't do this without her. She is selfless.

I've still got a total aversion to certain doctors and nurses on the ward and can be a complete cow. Seems there's a yin to my yan...... Little Miss Positivity can also be a complete diva. I make demands. One doctor is nicknamed "six veins" and I won't allow her to take my blood. Another is "one vein" and he's allowed. God love these poor doctors and nurses. Patience of saints.

Medically I've had a few things happen today. I've had two facial seizures. Kind of like being tazered to the face. Not good. Possibly due to medication changes. I'm trying desperately to manage these but it's very hard. They frighten me. I feel like my body is just doing stuff and I can't stop it. I'm trying to manage then as I do with the othe epilepsy - through positive thoughts and positivity Blasts. All the photos you guys have sent me help so much.

A cold compress is the single best thing ever. I permanently have s cold cloth on my head. I'm sure I look quite mad. But it serves so many purposes. The cool stops me feeling sick. It provides comfort. When you have two black eyes and a swollen face (as I do) it reduces the swelling. It can be put over your whole face, hiding you from the world. So I am the one with the soft, wet, baby facecloth permanently on her head. And I am the one who doesn't care how nuts it looks!

I've had another CT scan this evening. Results are for my surgeon I assume. I also had an injection in my tummy to stop blood clots. I didn't want to get it. Other patients persuaded me, along with a nurse and doctor that I trust. It was vaguely unpleasant but a sensible thing to do.
My blood pressure remains low on ocassion. Always was. I try to raise it through drinking water and doing whatever the nurses tell me.

I plan to try and relax this evening. Family have brought me a portable DVD player. I'm going to try and watch a nice calm film. At 7pm I will take necessary anti epilepsyedications, have a cup of tea and toast with jam, watch my film. Then I will try to get a decent night's sleep.

Tomorrow we will do it all again.

This is tough. It's a journey. I have brought those closest to me on the journey with me. I feel awful for that. Our journeys are all slightly different, but dictated by my brain. My family and friends are nothing short of amazing. Don't give me credit. I don't deserve it. It's those around me that are doing this. Literally saving my life. Every day. Meeting my lists of ridiculous demands. Unquestioning.

Plus my medical team and my friends in the Ward of Winners. I am surrounded by experts. I am surrounded by patience. I am surrounded by fight. Courage and selflessness everywhere I look. I am not 'inspirational'....... you guys are. Completely. I document it for others. And for nyself. So I understand it if there's more to come,. S o others understand what they are going through is normal.

Thank you to all of you. For being there. For forming my cage.
I have had so many gifts I couldn't list them all, but thank you for those too .
I love you. You are saving my life. Be proud of yourselves. You are inspirational. The goodness of people.
❤

Ward of winners

Welcome to side Ward 3. The ward of winners

Four women, two men

Each with their own story.

Each on their own journey.

Each one determined.

Some have been on their journey for days, some for years.

Each appreciates support from family, friends and medical experts 

Each is part of their own Support Team

The decisions we make are often different. We are independent.

But each one of us is brave.

Each one of us is determined.

Each one of us is fighting.

A Ward of Winners.

I am proud to be in their number. 

Still fighting...... conquering Everest.....

Surgery no 1 yesterday. Back on ward by late afternoon. Fighting violently against any form of opiate based pain relief. So no morphine or fentanol. Yesterday and today I am being treated using paracetamol and ibruprophen. I have two mighty black eyes and a scar that will run up my entire scull, fro my jawline right into my head.

Part of Spongy has been removed from my right temporal lobe. Notcwll, but part. In a week or so we'll get pathology, however we already know it's malignant, probably low grade and there for years.

Every day I talso ake steroids to try and reduce steroid, anti epilepsy medication.

Since being on this rehab ward I am understanding so much more about brain injuries. I am learning how to relearn Neuro pathways. I am learning to take my time and that it can be done. I'm learning I'm not going mad and that this is the same for people with strokes, tumours and aneurysms.

Today my sister and I rebuilt a pathway that allowed me to stand up and walk. Tomorrow we will work on that further.

I have had a 'brain drain' removed. Lorerally a drain stitched into my brain...... Agony. The act only made possible by the patience and support of a doctor and a nurse who were willing to offer me reassurance and patience. Plus my sister. As ever.

My biggest valence remains eoilepsy. Absence seizures. Only managed by me through positivity Blasts. Vitally important. My surgeon actively encourages what I've been doing. So when I feel negative or scared, I look at your selfies or read your texts/ whatsapps. This stops me having an Ensure no absence seizures and keeps me safe.

Tonight I lie with my blanket of love at my feet. My Buddhist prayer blanket over my chest. I'm looking at photos you guys have sent me bad I'm thinking happy thoughts. Knowing it'll quite literally save my life.

I'm exhausted. I'm scared. But I'm fighting. The same way you're fighting for me.

I'm listening to others on the ward tell their stories and I'm remembering I'm not alone.

I love you. You are saving my life.

When this is over I will make sure that others understand. 

My husband. My sister. My surgical team. My rehab ward comrades. Saving my life.

I made you a promise.......

I believe I made you guys a promise?? That I'd fight. That your completely overwhelming love and support would drive me forward.
I always keep my promises.
I am fighting and we are winning.
I have had brain surgery #1. My amazing surgeon managed to remove some of the 'sponge'. Not all, but some.
In order to ensure I could fight I violently refused morphine. Very violently..... I am being treated with paracetamol and ibuprofen. It hurts. A lot. My eye is black and so swollen I can't see out of it. In front of my ear and right up the side of my head has been opened up. There will be nasty scars.
But I know who I am. My wonderful sister even helped me stand up and wash today. That's reforming neural pathways. It's like climbing Everest. And we did it!!
I am fighting hard, with my amazing Support Team.
As promised.
I adopted the 'brace position' and you formed the cage around me.
So starts the next stage of my cancer journey.
A fluid life, an unprectabls life, but a life.
Luckiest unlucky girl in the world.
❤

Bad akPositivity keeps coming.......!

And the positivity just keeps flowing!! I have received a massive basket of gifts from work colleagues and friends! There is so much that I would need my own room to unpack it all! At this stage if something goes wrong tomorrow I will die of embarrassment at my rudeness of not having the decency to hang around and say thank you properly......

Thank you to each and every one of you. It is completely overwhelming and so, so appreciated. Also thank you to Fi who has helped organise and taken time to get everything to the hospital via my gorgeous sister.

I remain in the same place mentally as I was earlier. I know our lives have changed forever. Cancer does that. But I remain completely confident that tomorrow begins the next stage of our journey. I believe it will be a long one...... Hobbit style......  I know our lives will be fluid and may vary month to month. I also know with certainty that I wil NEVER worry about anything ever again. I will take every day as it comes and I will be grateful for each and every day.

Life lessons. They can be unexpected. They can be rude. Take them.

I feel like the curveball came and my family/friends/colleagues/ medical team formed a cage around me.

I'll see you all soon ❤

Ready for surgery.......

I am safely camped in RVH. In a nice, calm Ward. With a group of lovely, positive people. Each has their own story but each is as surrounded by positivity as I have been.
I am wrapped in my blanket of love and am completely relaxed.
I had another MRI scan earlier. It was like being in a spa! Honestly the most relaxed I've been for over a month. You want me to lie back, with ear defenders on, close my eyes, relax and listen to Ed Sheeran?? No problem at all! Easiest thing I've had to do yet. I was a model patient.

Good news is that the results were exactly the same as my originals. So although all the tumour crap is still there (both 'spongy' and 'angry peas'), it hasn't changed. Treatment plan remains the same. Short of some sort of medical miracle, I'm happy with 'unchanged'! No more aggressive than it all was before. Still everything to play for.

Surgeon has had a good chat. Remains confident and directive with me, whilst also humble and unwilling to take any chances. A perfect mix. I trust her.

The biggest risks as this stage remain the normal surgical risks - infection etc. These have been mitigated to the best of everyone's ability. There is also some risk of memory gaps again. Well, guess what? I've had that and I've dealt with it. In a month....... fairly impressively i think, if I do say so myself! Plus I've written it all up in last night's blog, so I can remind myself if it happens again. Reassurance for myself and for my Support Team. My brain will relearn the pathways...... just give it time and don't pressure myself.

So I am ready. Surgery is scheduled for 09.30am. May be later, may take until lunchtime. I'll be asleep so unlikely to know the outcome until Thursday I'd think.

I am going in conpletely relaxed. I'm going in completely confident.
Next stage of the journey starts in the morning xxxxxxxx

Overwhelming love...... a literal blanket of love

Tomorrow morning I am due at RVH at 10.30 for a scan.  There will follow a load of pre-surgery checks etc. Hopefully I will get my bed late evening. Surgery is scheduled for Wednesday, though times are fluid.
I've tried to set up a network of communications so people will get a wee post-surgery update, however it's far from foolproof. Grapevine may be best! And remember that no news may well be good news.
I am going into surgery 100% confident. I believe this is simply the next stage of my journey. Genuinely believe that. I'm not scared. I'm keen to get it done and to move onto the next phase.
And if ever you wanted proof that I am surrounded by the most amazing people in the entire world....... members of myclose friends and family this evening sent me a blanket. They each made a bit and then stitched it together. A literal blanket of love. I have never been more overwhelmed in my entire life. Anyone on earth who tries to tell me I'm not the luckiest person ever born should check themselves for a brain tumour!! I have been surrounded by love since this started. It just keeps getting stronger.
I am excited at the prospect of waking up with that blanket of love snuggled around me.
Every last person who has supported me has been incredible. In so many different ways, but all positive.
If ever you needed reminded of the goodness of people, then remember this story. Remember the overwhelming support. The positivity Blasts, the learning to redo routine tasks, the learning to release emotions. Remenmber the literal blanket of love.
I'll let you all know the craic, but expect an updated journey stage on Wednesday.
I genuinely love every last one of you.
Overwhelmed.
❤❤❤

CLARITY! My most important post to date.......

CLARITY

I’m confident that this is the single, biggest, most important update I will give.  I’m also pretty confident it’s going to take me forever to write it up and may not make complete sense at the end…..  I will do my very, very best to be succinct and I am going to concentrate really, really hard!!  Here goes……..

Today I woke up feeling pretty good.  My sleep has improved greatly since the meds were reduced again.  I was up at my usual 7am ‘med o’clock’ and was showered and dressed by 10am.  A fast start for me these days.  I have a friend who is a beautician and is also training to be a nurse.  We had arranged for her to call this morning to take care of some practicalities (did you know gel nail polish will cancel your surgery…. Infection risk?  Important).  She very kindly called to my home on a Sunday morning, no questions asked.  Interestingly, and in yet another twist of fate that I simply cannot ignore at the moment, she is currently working with patients who have experienced some form of brain injury.  We talked.  About the brain.  About how it works and what bits do different things.  I told her how I sometimes just felt like I’d gone a bit mad.  She was completely and utterly accepting of everything I said.  I started to realise that my journey and the feelings I am experiencing might not be so unusual after all.  We talked about the ‘reset’ of the brain that often needs done after a seizure.  The necessary prescription drugs, the confusion, the having to ‘relearn’ simple tasks.  We talked about cancer.  People expect a clear, simple diagnosis.  They expect a treatment plan.  They expect their story to be the same as someone else’s.  That’s not what happens.  Your diagnosis may be complicated.  It is likely to change as new information comes in and as that new information is assessed by experts.  Your story, whilst it may have some similarities, is highly unlikely to be the same as someone else’s. 

 
My diagnosis remains a somewhat harsh one.  Malignancy.  One probably low grade tumour, invasive, large spread.  One probably higher grade, more aggressive.  Both in the brain.  Both with treatment plans, although very different treatment plans.  Both still doing their own thing, as they have been doing all along…… so both open to changing their minds about how they progress.  Bit like their good owner then, aren’t they??  Let’s clarify this again…….  Cancer in ONE PLACE.  Treatment plans.  CHOICES.  A FAR BETTER OPPORTUNITY THAN MANY PEOPLE GET.  No timescales.  A different life, a fluid life…….  A LIFE.  A slap up the face from life, but one I still feel somewhat privileged to have been given.

My biggest fear has always been being left ‘mentally fully cared for’.  The wee daftie that has no idea what’s going on.  Costing my family a fortune financially and mentally.  With no quality of life, dignity and seen as a sympathy vote for all around.  I have complete clarity around this now…….  Firstly, you can re-learn routine tasks.  It is frustrating and disorientating.  It can be difficult for others to watch and there will be days when you question everything about it.  I came home from hospital unable to tell you what day it was, how to make a cup of tea, often losing time for days on end.  Two weeks later I can lead a fairly normal day, all be it at a slow rate.  That is progress.  Major progress.  Call with me now and I will make you a cup of tea, I will tell you a good story, I might randomly ask you a slightly off the wall question or forget what I was talking about……  No big deal.  It’s taken a month in total, but I have made massive progress.  I also walk every day.  Might only be a mile, but I’ll do it.  I won’t freak out loud noises, though I might politely ask you to keep your voice down or stop flapping your arms around.

The brain can heal.  Even if I am left with gaps, I can re-learn.  I’ve already proven that, and there is medical understanding now of how to promote this type of learning.  I also have my amazing Support Team around me to help me.  And I now know that the trick is just not to rush it.  Even gaps in memory that are more to do with people etc…… (which hasn’t actually really been an issue for me to date), are not frightening to me now.  If I liked you before then I’m sure I’ll like you again once I get to know you again!!  Again, the trick is to not be rushed.  If I forget all this due to surgery, then please remind me!  It will be very reassuring for me.  Another reason I’m glad I’m writing this all down.

Full-time cared for?  Unlikely.  Just time.  Patience.  Reassurance.  Fluid attitude.  I’m not one bit scared of that now.

I know I’ve already talked briefly about physical outcomes of surgeries.  I can categorically confirm that this is not of any concern to me at all.  People overcome physical difficulties every day.  I am physically and mentally strong.  I have support and love all around me.  Priorities.  If there are physical consequences then we will deal with them if we need to.  Again, not one bit worried.

A big day of revelations, I think you’ll agree?!  Having had these massive revelations I felt the need to get some fresh air.  The Big Man and I went to a beautiful part of the world – Binevenagh.  Remember the statue that was stolen?  The story was all over the news.  If you haven’t been there then go.  http://www.bbc.co.uk/news/uk-northern-ireland-31583028 

The weather was awful, although I have found an appreciation of all types of weather that is nothing short of liberating!  Weather reminds you that you are alive.  We walked.  Not far, but we were soaked. Lovely!  We sat in the car and looked out across the beautiful scenery.  We ate the best picnic I have ever tasted in my life.  We talked about everything that has happened and how so many people just do not realise how important these small things in life are, until they get the slap up the face we have been so beautifully delivered.  We talked about the people who get the slap and ignore it.  We watched other people arrive and do much the same as us.  I wondered what their stories were.  Which ones were experiencing similar things to us?

We laughed.  We cried a tiny bit, but not too much because I don’t think either of us were actually sad.  Quite the opposite.  It’s not being dismissive.  I know things are serious, but I am not scared.  Not even slightly.  I’m impatient.  Wednesday surgery cannot come quick enough now.  Let’s get this done and move onto the next stage of the journey.

Now we are home and I fancy a nice bath.  I’m going to do what I would usually have done on a Sunday.  A nice bath, music on, skincare……  my day to be a girl.  Don’t worry, I’m not going to lock the door.  The Big Man will listen for any mad splashes!  Bearing in mind, and I know I keep saying it, but I only had one grand mal seizure…… a month ago……  yes, there’s been some weirdness since, but actually nothing life threatening.  I’m going to put on some Foy Vance perhaps…..  a lavender bath bomb…….  And I’m going to relax.  Then I am going to put on a nice pair of pyjamas from the amazing and ever growing range of beautiful pyjamas that I receive on a daily basis! (Thanks for these by the way!) I am going to rest on my bed, perhaps even read the papers.  I am going to chat with Fin and hear about his day at work.  Then I am going to try and get a full night’s sleep.

Tomorrow I am going to take some time alone.  There are some things I need to do.  I also need to pack for admission to hospital on Tuesday.  On Tuesday my gorgeous sister is going to take me to hospital where (assuming I’m not bumped for an actual emergency) I will be admitted for brain surgery number one.  On Wednesday the surgery will be carried out.  On Thursday we will see what’s next.  Calm, sensible, relaxed, ready………..

Clarity.

Hospital staff...... the best people in the world

How many times have you heard it said....... how many times have you said it yourself.......  "I hate hospitals"..........  Kind of a natural reaction in many ways.  We've all had bad experiences in hospitals.  They don't tend to be naturally 'happy places'. 

I'm not sure my recent experience changes this completely......  however.......  What I was completely struck by is that hospitals are full of the most incredible 'givers' you will ever have the good pleasure of being near.  The range of care I was given in my local hospital Rehab Ward was nothing short of extraordinary.  It wasn't just nurses.  It was domestics, porters, nurses......  so many people who were just born to carry out a role.  Each as important as the next.

I took a lot of notes while I was in hospital.  Some of those notes make no sense at all now!  Some are clear.  As per the usual rules, I won't identify people, however there are people in my hospital that did small things which were extraordinary things.  I've tried to summarise these in the table below.

How do you thank a team that literally saved your life??  Well you can't really.....  but good quality food seems like a start!  I know a wonderful person who makes healthy, natural chutneys and jams etc.  I asked her to make me up some hampers that I could share with the hospital team as a thank you.  Tracy did me proud!  Today these beautiful creations were shared with the hospital team.  They can help themselves to whatever goodies catch their fancy. 

If you fancy some honest, natural goodies then why not have a look at Greenthumb's Facebook Page.  Tracy, Jonny, Aidy and Catherine came into our lives years ago through a shared love of music.  We have been so lucky.  Good people.  Just good, good people.  I love them dearly. 

What the team did -

WHAT YOU PHYSICALLY DID	WHAT IT REPRESENTED TO ME
Saved my life.	Pretty self explanatory!  In addition though, you provided me with honesty, safety, support and understanding.  You didn't pressure me and gave me the space I needed.  You listened.  You did not patronise me, you showed me respect and you made me laugh.
You talked to me.  You cared.	It gave me a sense of 'normality'.  You were open and honest and did not judge me.  You gave me practical advice and support alongside very real emotional support.  You are a rock.
Solid, practical advice.	You reminded me that the world keeps turning and I had better be ready for what's coming next.  You gave me your time and the benefit of a sharp, practical mind.
Got me out of bed in time and made me feel safe when the Ward got a bit hairy.	The Leveller.  Sometimes you just need someone to tell you to get up, wash your hair and wise up.  I needed that.  Your accent is truly awful, your wake up calls nothing short of offensive, but both were exactly what I needed at that time.  Hearing a man's voice was also somewhat comforting at nights, from a security point of view.  Although I am fully aware that there are many female nurses in the Ward that would be a far greater physical adversary than you!
Gave me your time and genuine love.	The most amazing comfort.  Although our religious beliefs may remain different, I have found a complete respect and open mindedness.  I am happy to take prayers and have been comforted by the vast range and styles available!  You are just a good person.  You were the one I knew would come if I needed you in the night and would patiently listen to whatever nonsense came from my mouth.  Without judgement.  Just whatever I needed.
Gave me a scan.	Listened to the mad story about thinking I was being lethally injected like in The Green Mile.  Rubbed my hands while the dye went in and told me it was ok.  Accepted the madness and shared a laugh, while comforting me.
Opened my curtains and windows every morning and cleaned my room.	Hope.  Two weeks inside is a long time.  The feeling of fresh air can be amazing, especially when you're on high doses of steroids!  The feeling of fresh air every morning was amazing.  It reminded me I was still here, still fighting and that I would be ok.  One of the single most valuable things done for me on a daily basis.  You also took time to pin up my cards, making my wee home happy and giving me a positivity boost every time I looked at them.
Fed me!	Do not underestimate the power of food when you are taking steroids!  You talked to me like a normal person, fed my crazy cravings, and laughed with me about it.  You gave me normality at a time when I was struggling to think straight.
Nursing care in terms of observations, but also orientation at a time of confusion.	You always told me what you were doing.  You orientated me by telling me the time, what you were in to do, whether I should open my eyes or go back to sleep.  You always said your name and you always rubbed my hand.  The comfort of this was amazing.  I was often confused and these acts just settled me down in an amazing way.
Nursing care, talking, reassurance.	You are a total all-rounder.  You are an amazing nurse in terms of the practicalities, but you also have a lovely way of providing personal care.  The nights I knew you were on duty were the ones where I was most settled.  I knew you would come if I pressed the buzzer and I knew you would keep me safe.  I also knew I could talk to you if I was scared, even if there was no real reason behind it.  When I took the facial seizures after the meds change, I was literally terrified the first time.  You provided me with both the medical care I needed to keep me physically safe, but you also held my hand to provide me with the mental care I needed.  These things in combination make you probably the most memorable.  I hope you have had a brilliant time in New Zealand and I genuinely hope we meet for a coffee and a catch up in the future.
Doctor care - physical exams etc.	You make me laugh.  At a time when it would've been so easy to be in despair, you always made me smile.  I remembered you so clearly from my initial admission, simply because you are pretty and happy.  This was exactly what I needed at so many times.  You are a pure joy.
Nursing care - obs etc	You talked to me like I was normal.  You made me laugh and told me all the craic from the outside world.  You are a happy, upbeat, good person, who I just like!
Nursing care and advice	What a well timed kick you gave me!  And how much did I need it?  When you spoke to me I genuinely believed I was too unwell to walk outside on my own.  I'm ashamed of that now - what a drama queen.  You kicked gently, but you did kick.  I cried for what felt like hours afterwards; something I am not known to do.  But once I dried my eyes I was left like the biggest weight had been lifted.  I did not sit in another wheelchair again and I am absolutely certain that your 'tough love' message was one of the single biggest turning points for me.  You are without doubt in the job you were literally born to do.  You are right at the top of my list of people that made a difference.
Nursing care, advice and kindness	You listened and you let me cry.  I made you cry and I feel so bad for that.  You reminded me that other people have stuff going on, but they still take time to listen to my crap!  You are kind and genuine and helped me so much.  You let me get it all out of my system and you absorbed my emotion at a time when you shouldn't have had to.  You are selfless.
Practical OT advice	Reassurance that I was not going completely mad, that I can live a normal life and that I will be kept safe.  With a gentle reminder that I am still in charge of my own destiny.  Help for both my physical and mental wellbeing.
Nursing help and skincare offer	How wonderful in the middle of everything to have someone offer to look at my skin.  My obsessive, steroid driven, moisturising and serum based routine would have put any woman to shame, but I can imagine there are many who would not have been in the same position after 2 weeks in a hospital bed.  It was kind and lovely and genuine and I really appreciated the practicality of it.
Nursing care and practical advice	A solid, honest, 'let me know what you need' offer in the middle of everything.  Genuine, this is me, give me a shout.  Invaluable at a time of confusion and often fear.  No fuss, normality.  A decent down to earth leveller who I greatly appreciated.