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.
If 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!)