Survivorship Guilt- Loosing a Cancer Friend

Yep this one is hard to write- but after spending a little while searching I realised its not out there enough in those moments where we need it.

Tonight I found myself scrolling through Facebook to hit a post that had me stunned into shock. Another (yep I’ve been dealing with this for 8 years now) cancer friend has passed away. I’d met this person through the sailing charity I’m a volunteer for and remember really clearly having a very long and deep conversation with this young person she was something special. I now choose not to be informed by the trust if a young person I’ve met passes away (simply because I have to protect myself from feeling like I did tonight) but also now they don’t do this either. I had a mutual friend with this person and through a shared social media post I found out.

I’m going to describe what its like simply because tonight when I had no words I wished I had the explanation to pass on to my ‘normal’ (non-cancer) friends as I was completely unable to talk to. Please understand this is my experience but I’m also writing it for my friends to also use in these situations.

What the grief process is like

Because we have been so ill we have been exposed to death way more than most of our peers, but the loss of a cancer friend is so different to when you loose a family member or friend because of an accident or other illness. I say this because I often feel greater grief in this than like any other types of grief I’ve experienced simply because we also have survivorship guilt wrapped up in our grief. Now we have different types of cancer friends loss, those we’ve met and done life with over time, those we have met only a few times but also those who we have followed through social media. We also have the expected and unexpected versions of loss too. For some we’ve known are on palliative (end of life) care for some time, others have a slow decline in health, and others are completely unexpected- and happen completely out of the blue as the deteriorated over just a few days or hours.

Because we now live in a digital world, most I’d say 95% of the people who I’ve lost over the years I’ve found out through social media. So almost every time I go onto Facebook now (because of my years of experience) I prepare myself just in case I scroll to the news of a death and I know this isn’t exclusive to just the cancer world.

When your met with the news a cancer friend has passed away one of 4 things happen- 1.  your well prepared and although its still sad- and you still grieve you aren’t hit quite as harshly with survivorship guilt and your able to process through it quickly (as quick as you can after any friends death). 2 you are prepared for it but haven’t prepared how much of an impact their loss has on you and survivors guilt slaps you. 3 it doesn’t hit yet- and is delayed either due to the shock or being unable to process it there and then but it always still hits Or 4 your completely blindsided by the grief and overwhelming survivors guilt.

I don’t think there has ever been a time that I’ve experienced the loss of a cancer friend and not experienced survivorship guilt.

What does survivors guilt look like

Well it looks you hearing the news and then the complete shock of the loss- it hits you like a big giant wave knocking you off your feet completely. Your unable to breathe and you haven’t yet got to the tears but then its like a huge weight falls on you… one you can’t shake and it consumes you- that’s the guilt- yep it comes before the grief even hits but the grief usually hits very soon after so you experience them together sometimes. This guilt is tough to explain but I’m going to do my best. Its like you suddenly question why them, and not you. Why did they get taken when they had so much more to live for than you… You feel responsible for them because you’ve been through such a similar things and supported one another. You see the potential that their life had and have a moment where they are put on that pedestal of well they were better than me… You feel guilty for surviving when they didn’t. You feel guilty for not being able to help them. You feel awful because of you realise you shouldn’t feel guilty so you get guilt for the guilt. You question who you are, you question if the last thing you spoke to them about was positive. It’s the gut puncher that they won’t now get a chance of a future. The pain that you’ll not get any more words of wisdom or yea I get that too from them. Its worse when you’ve journeyed with them, or have the same cancer because you then feel like ‘you’re the lucky one’ for surviving. You question if you’ll be the next, you question if your going to relapse but it also has you questioning who you need to prepare to loose next. Plus then you have the normal grieving that everyone experiences.

What people tell you

Its hard because rationally you know the things that people tell you, it’s the same advice we give to our cancer friends when the face it… That there is no need for you to feel guilty. That the harsh reality of cancer is not everyone survives. There is no reason to why you survived and they didn’t. That you need to remember the good, the joy you brought them and they brought you. The comfort you were for each other. That they wouldn’t want  you to feel like this, they would want you to live your life to the full… this last thing though- it’s hard because you end up living your life for them.. You take them on add the name to your ongoing list of the people your living life for… I’m not sure how I feel about this but in resent years I’ve begun to realise that this is just  how unhealthy it is to do this, you cant live for them… you can live and know that they would be bursting with pride for doing so… but you cant live for them.  Yet that rational thinking doesn’t exist in that moment… sometimes it takes minutes to move through survivorship guilt and into rational, sometimes it takes hours and other times it takes weeks. I have no answers for how to move through it- other than it helps to let people in, help them understand where your at and help them understand its not just grief your dealing with. I find that hard especially in the overwhelming stage (which can sometimes last several hours) hence why I’m writing this!

 

Why I struggle with the Battle metaphor

The thing with treatment is you could be identical twins and have the exact same cancer, same stage and place. You have the exact same treatment but you could have completely different response and outcomes. No one knows why, its just the reality. I think this is the reason I struggle with the battle metaphor… by this I mean the lost their fight/battel or the you’ve beaten cancer. See there are a few problems with it, it implies that some haven’t fought hard enough or you haven’t won, that others fought harder because they survive which is simply not true. It also is hard for those who have ‘beaten cancer’ because you have you will find that people assume your ‘better’ and healthy now… you still live with the effects and the impact of the words ‘you have cancer’ (or cancer-ish in my case) will forever have on your life. At my friends Peter’s funeral this was written on the front of the service sheet and sums it up so well ‘When you die, it doesn’t mean that you lose to cancer, you beat cancer by how live, why you live and the manner in which you live’. Stuart Scott.

 

Cancer Friends/Normal friends

Your cancer friends get you like no-one else, they understand you and the problems you face unlike anyone else. I love my normal friends but at times they just don’t get it, nor do I expect them to- no amount of explaining even comes close- but with a cancer friend you know they get it… like completely! So its hard when your cancer friends are literally dotted throughout the whole country and the people you have around you in the moments when you get the news are often your normal friends its really hard,  while many of them understand grief, many haven’t lost friends and the certainly don’t get what its like to loose someone who you have shared experience of, or the survivorship guilt either. However I’m beginning to learn that they can still support me in this- I’ve just got to try and explain and understand that they wont get it fully, but that’s OK.

Loosing friends doesn’t get any easier, yes different people hit me on different scales like any grief but the survivorship guilt can vary- and often doesn’t matter how well I knew someone or not. Sometimes it just depends on where I’m at personally before the news, other times it depends on how well I knew the person, others its whether there is an accumulation effect, and others on how prepared or unprepared I was for the news. I’m learning to let my friends in, praying for peace and working it through. Maybe one day I’ll have the answer and be able to separate the grief from the guilt but for now- this is me stumbling through.

Hope this helps bring understanding to the non cancer world, and a way for the cancer world to explain it. I’m grateful for those church friends and cancer world friends who have been there for me over the last 24hrs. You guys really helped thankyou.

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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!)

Welcome to my blog!

Hello world!!

So welcome to my shiny new blog!! You maybe wondering what the heck I’m blogging about this time. Well it’s going to be very different from my art blog that I did last year for two reasons; firstly because I don’t have to do it for marking purposes and secondly because it’s not going to be about art but about cancer instead. I hear your sigh!! And the ‘aren’t you over that yet???’- Nope, and I’m proud of that- my life is different and always will be, I’m embracing it and #daring2Bdifferent!

For those who have no idea who or what I went through I am please see my story page. This gives a bit of an idea of who I am and I will update and edit this as time goes on and I become a slightly better writer. I’m not a great writer so please bear with I’m learning. I’d say I’m a people person, put me in a room with a group that I don’t know and I guarantee I will walk out with a few new friends, and I will always have lots to say, but essays and writing- ugh nope not for me!!!

For those of you who sighed earlier isn’t she over the whole cancer thing yet- no I’m not and why should I be- cancer changed my life and I’m proud of that. It’s given me some fuel to my fire and something to shout about. Some who are diagnosed choose to have it as a small part of their long lives and don’t mention it and that’s fine- I get that’s what some people choose to do. Others shout it from the roof tops and that’s just as OK. Me- well I do some (maybe a lot) of that shouting from the rooftops bit but also I’ve been left with some long term effects that mean for me a completely ‘normal’ life is still some way off maybe it won’t ever happen but who cares- I’m me, and I’m proud to be where I am now!!!

So why blog and why now?? Well as many of you already know I lost a dear friend recently called Emily- she wrote a blog and founded a charity by the same name remission possible (see here). Now Em was not someone to sit and do nothing, like me she had lots to say and wasn’t afraid to say it… In short she has inspired me so here is my new blog- one of my first posts will be about this amazing girl so keep an eye out.

I’ve been thinking about blogging for a long time- but I tried it a few years ago and gave up very shortly after because I didn’t know what to write about, didn’t dedicate the time and was not in the best place for writing it and I felt it was a bit too ‘woe is me’ so gave up. Now I’m 5 years post transplant almost 6- so I’ve had a lot of time to reflect on my experience. I want my blog to be helpful for others, honest,  Inspiring (to fill (someone) with the urge or ability to do or feel something, especially to do something!) to those who haven’t walked in my shoes, therapeutic for myself, and difficult for me to write because I don’t want to just give the PG version of events!

I do expect at times it to be hard to read- but its my story, my feelings so please respect that, you have the choice to read or not to read it. Like anyone else out there blogging I’m not setting out to be the next booker prize winner, or for my blog to get very far- but if it helps just one person then I know its working.  There are lots of Cancer blogs out there and so with time I hope to be able to point out articles or blogs that have helped me. I have talked to many of my blogging friends and we have talked about how many of their blogs just scratch the surface and stay PG. I completely understand this because family and friends read them but I’d really like to try and push myself past this and not hold back.If this blog is going to be daring to be different I’ve got to get past that people I know and love will read this and write how it is anyway.

I do expect myself re-visiting blogs from time to time and changing my opinions or adding to them when I feel I need to but I’ve already come up with a list of over 100 blog post ideas and it keeps growing- so I really need to get started, and quick!!!