Just thanks…

Today I had a check up at the hospital where I wrote the following…

In the waiting I sit, nervously, anxiously waiting. I sit and see others come and go one who is told the news transplant is the next step, another looks weeks out from transplant still tired and weak.
You see the same faces from the staff who have spent decades serving this nation. Trying to fit in the ever-growing case load of people. Sending for bloods, then checking your obs. These people reach out to see how you are. They have the answers or go to find them out, they see who you are and what your about.

As I sit 7 years on I still get this fear that today is the day I hear bad news. I see a familiar doctor, I’ve not seen in years yet now she’s a senior. I feel a sense of pride as I’ve seen her grow. she’s worked hard and boy does it show.
I glance and see my notes- sat on the pile with a post-it note. I know what it is I’ve seen it before it’s my protective consultant saying she is mine stay clear, he wants to see me again but still I ask why? Maybe there’s news.

A guy who is maybe 10 years older is the closest in age to me today. I sit and i wonder if his life-like mine has been impacted and changed. He gets called through and I sit and wonder what news will he receive.

As I wait all becomes quite, still and peaceful I look around and contemplate those missing faces- the ones I know I’ll never see yet still miss so terribly. I question why me, why was I so lucky. Why did it work for me but not for them.
The guy comes out smile beaming and I breathe a sense of relief knowing he’s happy. Knowing he to is one of the lucky ones.
Then the finger beckons, I stand and my heart races the steps into the room feel heavy and weighty. Despite knowing I’m fine there is still that chance. I stop for a second and take a big breath. I sit and he opens “well who’d have guessed your 7 years old!” I breath, today is not the day I hear bad news. I settle and begin to answer his never-ending questions, the ones I’m sure he doesn’t need to know as well as those I know he does.

I tease and he teases my consultant is not just a doctor, he’s a friend and a father. He knows me so well. He knows when to delve to ask the questions that make me squirm and when I need him to lay off and back down. I’m so grateful for him and I’m just blown away as without him I’d never have made it this far.

The questions are over and it’s now my turn. I talk life, my future my world for a moment he’s there protecting it all. We reminisce we laugh and I well up knowing that Thank you will never be enough. It’s more than just me it’s the thousands of others. It’s that thanks that’s unsaid, unheard or forgotten. It’s for those who we’ve lost but that I know you’ve not forgotten. What can you say to the man who changed everything. To the doctor that I know I’d be nothing without. I say all I can and again I say thanks.

Today I was told I’ll never be discharged that I’m there for life. For some this would be bad news but for me I breathed a sigh of relief because I know they will always be looking out for me. I was also told that travel is limitless and I could go anywhere again it’s like a door being flung open suddenly places I’ve only dreamt of could become a reality. (Now would be a great time for that lotto win). Who knows.
I’ve come so far yet still I know just how far I still have to go. I leave behind a man bursting with pride he did this, he’s the reason I’m alive. We hug and I leave thanking again as I walk out with a smile and a grin. I chat to the nurses who all played their part.
I tell them about how now I’d do it different from the start. That the 20 old me knew nothing and no-one. I wish at the time I’d had some more fight. I wish at the time I had some more life. Now I look back at the years that I wasted. I could have done more but instead I just … wasted. Instead of fighting for more I just didn’t want it. I wasn’t focused on living or striving for more. My life was over, no hope a disaster. I couldn’t see out and didn’t want different. I’d just moped and I moaned, I wallowed in pity. With no hope in recovery I settled for less. Until one day that changed and this I addressed. I now see things different and I hope for the best. I see the progress I’ve made and the miles that I’ve distanced. It was slower than most and I made that hard. It’s not simple or easy but I know I’m far from done. My life’s worth living I’m no longer a bum.

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Legacy Ball.

Its been a while, but i felt the need to write. I’ve started this blog titled Legacy Ball but we will see where it ends up. As many of you know last weekend was the #LegacyBall in honour of my wonderful friend Emily Clark a girl who I miss every single day.

Most people look forward to fancy dresses and getting all dolled up and getting to wear pretty shoes. Me not so much, I don’t know what it is but I don’t like to fuss, I dislike shopping rarely wear makeup and shoes well lets just say your much more likely to see me walking around without them than with (I’m currently sat in Sunflower & I a coffee shop come florist in cardiff bay shoeless). However it was #foremily so I couldn’t not go. It was an amazing night and I was so grateful to see many of my cancer friends who had brought their own tables of people along with them. The food was incredible and Em would have loved every second! It was a fantastic evening and I was super grateful that some of my family came along to.

But its so much more than that- Currently our Bone Marrow Transplant ward in Cardiff is well- dated and we don’t even have en-suits now you may think why do they need en-suits?? Well a bone marrow transplant is basically a new blood system and immune system so while it grows your super prone to infections so your not aloud to leave your room. Some are in for 2 weeks others for 3months+ (depending on how fast you graft and how many complications you get). I’d like to ask you how long have you been without privacy? How long have you gone only using baby wipes and a bowl to wash? How would you cope using a commode every day for 3 months? We need a new unit so more people can get a second chance at life like I have. The #WilsonWard need £1 million… so far the incredible remission possible team and supporters have raised £52,000 but there is still a way to go. Can you help? Do you want to be involved in something amazing? Did you go but left with money in your purse why not make a donation? Why not sign up for the next event?

Im now sat in a cafe in tears because I’ve just heard the song Piano Man- I’m instantly transported back to Michigan to summer camp- to the life I had. Many people (sometimes my family and friends included) don’t understand what a huge impact a bone marrow transplant is… Im reminded of the conversation I had with some of my amazing cancer friends on saturday night as we sat and watched people dancing feeling comfort in the fact we all understood how each other felt. I remember the way my consultant by just being on the stage on Saturday night made me cry- because without him I wouldn’t be here, he pushes and never gives up. Hearing how he had to break the news to my friend that they were out of options was heartbreaking but inspiring at the same time because I know how hard he fights for every single one of his patients. (He’s the guy in the pictures below [the others are some of my cancer friends])

I’ve spent pretty much the whole of this week recovering from one night. Sometimes one night out has no impact on me other times it could have a huge impact. I never know. I can’t plan, I can’t think ahead to a year from now or even 2 months from now and this is all thanks to my transplant. Not that i’m not grateful because believe me I am! Life is very different for us and it may always be that way it may not, but for now I will forever be reminded of it because despite my progress this big thing happened and it effects me every day. However, we don’t need limiting because of it in fact we need the push we need to go to things like the LegacyBall to be reminded of how far we have come. We need the challenge because without it we will be stuck. We will not be more like Emily who is was always pushing forward. So while you may think sometimes I’ve moved on (i haven’t), or I’m still stuck in cancer world (because I’ve no choice) or that I’m still really ill (no this is me now) remember I’m different now because of it and thats ok- because boy am I a better person thanks to it. Please remember how far we have come and that we like you don’t want to be limited to anything. So its for this reason I’m begging you to dig deep and donate to the #wilsonward help give others that chance to be a better human! Give them a second chance at life let them thrive!

When I was at the ball I was reminded how much I’ve changed and achieved yet I only saw this when I was with those who ‘Got it’. I see how different I am from my family and others my age, so it was such a mix of emotions being there. I’ve missed Emily and thought about her every day which is something I sadly didn’t do when she was alive. I looked forward to our catch ups but I’d say she has impacted my life even more since her death than when she was alive. Emily was the sort of person that just hearing about her would make you want to meet her. She was the crazy patient who kept up with her studies whilst going through the craziest time of her life. She would chat to you about everything and anything and you’d leave feeling happy, alive and inspired. She would laugh with you, laugh at you when you cried whilst remaining compassionate. She never complained or moaned even when she had reason to. She had such a strong faith and was so driven and determined I’ve not met anyone like her. But for me Emily was life changing! (So life changing it needs a whole other post for it). Emily’s plans were bigger than just her- she wanted to help others she wanted to inspire people to do something. I would absolutely love to do more and believe me Ive tried! But as I’ve explained above my complications complicate things so I can’t plan a big event or run a half marathon. What I can do tho is inspire and encourage you to do something. So why not ask me more about this amazing Emily, what the Haematology ward is really like and let me inspire you to do something.

Emily wanted more to have a second chance at life so for now i’ll leave you with the link to Emily’s/WilsonWard just giving page… Go on empty your purse there…https://www.justgiving.com/fundraising/remissionpossible

For Emily

So I thought I’d post some more about the reason I’ve come to blogging my inspiration and why I’ve suddenly felt the urge to spill my guts and write.

Recently I lost an amazing cancer friend called Emily Clark. Loosing any cancer friend is hard but loosing em has been one of the hardest. I first met Emily when I was on Teenage Cancer Trust for my monthly immune system infusion boost. She hadn’t been in very long and I remember thinking how young she looked. I decided to go over and say hi and offer some words of wisdom. Em was lay in her bed trying to keep herself occupied- she looked really thin and it was only her first or second day of chemo. She told me that the nurses had told her if she didn’t eat they would give her a feeding tube. So I’ve had a number in my time so offered some words of advice similar to this….

Yes a feeding tube isn’t ideal but it isn’t as bad as you think it is!! The nurses have done this procedure thousands of times (and prob had to practice on each other too) so they know what they are doing. When it goes in it tickles around the edge of your noes and does that until it reaches the bend but that’s the worst part- it’s a strange sensation but it’s not painful.

The nurses get you to sip a drink through a straw this is helps in two ways one gives you something to focus on and two means the tube is eased in the right way into your stomach.

The feed itself- well it sometimes makes you feel a little bloated but it’s because they are feeding you what you should be eating and if you haven’t been use to that it makes sense.  Having a feeding tube doesn’t stop you from eating what you want either they can change the amount of feed at any point.

The biggest pro for having it is it takes the pressure off. Makes you able to eat what you want when you want without worrying about the nurses nagging you to eat more.  There are downsides like with anything being sick for instance means your line comes too. My advice clean it off before they take it out!!! But this point you have seen the benefits, have had it done before and so can do it again! Also I explained that if you have methotrexate (a type of chemo) this can cause you to get blisters and ulcers in your mouth, throat and stomach lining- not everyone gets it so don’t stress over it- but if your throat becomes sore, even just s little bit.. Get a feeding tube in because once it’s bad they can’t do it because it’s to sore and blocked- eating at this time becomes impossible so it’s best to get it in quick so ur not left hungry but unable to eat.

Em still wasn’t keen on the idea but at least she did know what it was like in case  she needed it. We talked about school and the implications cancer would  have but Emily was determined it wasn’t  going to get in her way, and I don’t think it ever really did.  We talked about JTV then jimmyteens and how she could find videos of patients talking about their experiences and  find out information about her cancer. I spoke about all the things cancer has helped me to do like sailing and nights out with cancer friends and knowing your not on your own. These were all thing that she couldn’t wait to get stuck into! Shame the unit lost our support worker fairly early on to em being on the ward, and has only just been replaced with a permanent member of staff 2 years on. I really am gutted that she never got to experience some of the amazing things I’ve been able to.

Emily was one of those people who you would sit down with for 5 mins and instantly become friends, age didn’t matter, em was so smart and mature she could talk to anyone. If she didn’t know something she’d find out, throughout her treatment she always asked questions and would want to know everything. Emily never complained she kept positive and knew that she’d get through it. Emily was fantastic at telling you how it is, she’d say ‘well I’ve got a bit of GVHD, but its only a bit so it wont stop me.’ She would call you out if she thought you could push yourself more or if you were complaining about something petty and insignificant. She’d listen to you stories of beyond the hospital walls despite not being out of them herself very much. Laugh with you and was one of the best at giving balanced advice when you needed it most. In the days since her death this is probably what I miss the most.

Em would tell me about her science work and what she was learning (science wasn’t my thing as you may remember) but she told me anyway- using so many words you’d come back 3 days later and she would still be chatting. I spent hours chatting with her, sometimes hours after I’d been un-hooked from infusions and could leave but I chose to stay because it didn’t matter where we were- we’d never run out of things to say. She was strong minded and focused on her future and despite being hit by every side effect known to the cancer world. I always thought she’d be ok. There were times where visiting wasn’t possible or i’d be thrown out by one of the nurses because one of us was too ill to be around the other (what a load of nonsense). But then we talked through facebook when she was in isolation during transplant about the incredible boredom but not having the energy to do anything. We talked about food, music, books and blogging. She had so many things she wanted to talk about- wanted to thank, em always had a long list of ideas and half started blogs. Two of which we spoke about I am going to write about in the future. I never felt like I could write like this before- but em has pushed me to it- and back to it even today. I’ve had a really tough days since loosing em and I think its because I believed in her future plans as much as she did, and I’m heartbroken that I wont get to give her uni advice, or how to deal with the fatigue advice- but been strong on the outside just like em, smiling and chatting away not letting the world get to me. After all Em wouldn’t complain- so why should I.

One of the most resent things that Em did that has changed my life was talking about her faith with me. I remember hearing her voice when I called into the ward waiting for some meds- but couldn’t see her. I asked her brother (not recognising a now very grown up Evan) if he knew where Emily Clark had gone (thinking she had been shoved in the parents room again). He told me it was his sister and she had just been given a bed downstairs- so off I rushed to be faced with the smile of Emily and her mum Donna. Donna left Emily and me to it and went to join Evan (or maybe take him to football). Me and Em got chatting straight away- she had been having some trouble with GVHD and they thought it was effecting her lungs. But Emily was her happy go lucky self- had to have some stitches out from her new line insertion/ or removal I cant remember which. Jess (the mess a nurse who I love) came in and asked if we were happy she did it in front of us both and of course that was fine cuz we could continue chatting away. Id recently lost a cancer friend who I was close with and I was telling her that I decided to go to his funeral (despite me not normally doing so with cancer friends) thanks to the EMCT guys letting me know they would be there and I could stick with them- it really helped me having the support from them. Anyway- my point was that I found his funeral perfect- it may sound silly but it really was and I will explain that more in another post. But what it did get me to question was my own faith- how had his remained so strong throughout and mine- well I wobbled so far off that I hadn’t been to church in a very long time (baring Christmas and Easter cuz that’s different).  I explained about how my flatmates seemed to have a strong faith, and I believed in god but just wasn’t feeling very connected. She challenged me on this- and she challenged me well, asked me what was stopping me- was I in a hospital bed on a Sunday? Or any day of the week pointing out faith isn’t just for Sunday’s. She told me I had to find a church that fitted me- and not all churches would. She inspired me with her faith it was so strong despite everything she was very comfortable chatting about it all with me. She knew her maker as a friend, this was something I was envious about- but it all made sense to me once I realised, that’s why she wasn’t ever ‘ohh woe is me’ because she prayed about her worries and let them go. She would read scriptures and be inspired by them, but also knew that science was her calling, hence the reason she was so committed to her studying from a hospital bed (I don’t think I’ve ever seen another teen as committed to work before.) I’m so grateful for Emily challenging me in this way because I’ve now found a church that fits me, its relevant to me and challenge the way I think about the world, God and myself.  A few months ago writing this challenge that Em set me wouldn’t have made it to the page- but I’m proud of my faith- and I’m Proud of Emily!

About 2 weeks later I wanted to tell Emily that I hadn’t forgotten but had been ill and I was visiting home that Sunday- but that I’d found the church I wanted to try on Mother’s Day. She was in a side room (which either means they are worried about her getting something, giving others something or she isn’t well.) Unfortunately it was a bit of all of it- our TCT doctor let me know she had to have some painful tests earlier on that day and just needed some rest. I messaged Donna and Em to let them know I was thinking of them, and praying for them. A few days later Em posted something social media- to me I thought that the worst was over and she was getting better, so I stopped worrying and concentrated on getting myself infection free again so I could go visit her, and tell her all about my amazing new church.

I was at an Ellen MacArthur Cancer Trust training day when I began to feel odd- All morning id been jumping around full of beans and then all of a sudden I wasn’t- I put it down to nerves of the game between Wales and England. I brought a bracelet at lunch time and thought about getting one for Emily, but then a thought came through my head what if she wouldn’t like it- so I brought one put it on and decided I’d give it to her if she wasn’t well enough to go on a trip this year (whether she liked it or not). I then went to put Peter’s name on the memory tree that the trust do each year- and I cried- remembered the good, and looked forward to the future. Later I went to watch the rugby with 2 of the girls from the trust- we found a pub in Birmingham just before the anthems (thank goodness). I was praying for the boys to do well, to play with integrity and win- but god had other plans- his hands were busy welcoming my friend Emily into heaven. Just as wales began to play again in those final 10-15 mins I got a message from Donna saying Emily had passed away. I lost my breath, and couldn’t see past the tears. I was more than distraught I was devastated I was pleased that I was surrounded by cancer friends who got it- but it hit me hard.  My life since that moment has not been the same, I think about Emily every day. I talk to her, pray with her, and am inspired by her every day.

Since loosing Em I’ve written a list of about 100 blog idea’s, got more involved with Charites including some that I hadn’t prior to Emily’s death, and I’ve made God/Church is a big part of my life. Emily has taught me so much, how to not just live life but thrive despite what ever gets in my way complications wise. To have a kind heart that listens to others and offers support and guidance. To smile even when all I want to do is cry, reach out to those around me when I need it, and to write this darn blog- stick with it and dedicate some time to doing it. Thankyou Em for your wake up call today to push me to finish this post.

Emily’s final weeks were spent planning to inspire other’s. She loved our BMT Consultant Dr Wilson, and knew that the BMT ward wasn’t fit for purpose. So started to plan a way for a new unit to be built with a ball, and lots of fundraising events. I’m sad she will never get to see this built but proud that she has inspired so many to get behind her dream! Em was inspiring but in her words- ‘I don’t want you leaving this saying how  inspirational I am unless you are inspired and motivated to do something.’  Emily Clark- Founder of remission possible, in remission right till the end.

EmilyIf you have been inspired/ touched/ read this blog I would encourage you to visit her website- https://remissionpossible.org.uk and consider donating to the ward (which I will harp on about a lot so you might as well get a donation out the way) https://www.justgiving.com/remissionpossible.

(Please bear with any mistakes or weird sentences I’m still getting use to this blogging malarky!)