My birthday

So I’m going to start by say Hi from my 29th year! This post well I’m not sure where its going to head yet. However felt like writing today and thought it would be good to reflect as its my birthday and that’s what we do as humans right?

I’m currently living in the leafy city (large town) of Hereford, and I’m doing a leadership academy with my church. Its tough! Like really tough at times but its defiantly the best decision I’ve made. Its tough because we go deep, we are looking at elements of our character, the things we do- why we do them and changing the elements that we do not want to see (this is a us choice on these things though not a forced thing). We are also learning more about who God is (Father, Son and Holy Spirit), getting to know the bible more and getting some incredible teaching along the way too. I have to say on the days that aren’t hard I’m loving it and it’s incredible to be apart of such a brilliant community of people. We are fighting for each other and seeing big breakthrough in our lives too. The days that are more challenging- knowing that its growing me keeps me eager and committed to finishing the course too!

I’ve been learning so much and the growth in me is huge… I feel so different yet it’s really hard to put into words on the things that God has been doing in me. But one thing I’m now being more honest and open about how I’m feeling. I’m realising it doesn’t matter what others think or what others think of me… if I’m feeling its my right to say- and I don’t need to be ashamed of the things I’ve experienced, done or felt in my past. My past no longer defines me and I am already living in that freedom and I know there is more to come.

I recently got asked to speak at a cancer conference for teenagers and young adults called FYSOT (Find your sense of tumour) yes I know its ok to laugh at the title that’s the point. I wasn’t sure about doing it at first and I really didn’t want to go and do a hi my names cancer type of talk just covering my diagnosis and journey which with only 15 mins to talk it easily could have been. Instead I wanted it to be meaningful and so I went and spoke about losing the cancer label… I was an incredible experience and it massively pushed me. I had huge breakthrough in my life preparing it as I looked deeper into what losing the label looked like, I ended up with greater understanding of why I had clung to the cancer label for so long realised the work that I’ve still got to do on it to become freer from the label. What I was most shocked about was just how honest and open I was (being on the course I am on and asking God to guide me in the writing process defiantly helped with this) I spoke about things that I never thought I would ever share and I talked about the reality I face but in a way that didn’t dwell on it because these things no longer define me. I was able to  and spoke about the small changes that I’ve made that have changed everything for me. I had some incredible feedback  on my talk and some great conversations over the weekend with several young people. I was really grateful for the opportunity and pleased I could bring a word to these people that could really help them move forward (as much as possible).

I am really happy with where my life is at right now. I had a great summer with the trust and got to take part in a small ships race with some other grad volunteers back in September too. I’m loving that I get to be apart of something bigger than me and get to be apart of such a fantastic charity that makes a real lasting difference… don’t just take my word for it this blog written by one of the young people Ellen Macarthur Cancer Trust took sailing this year… https://nileyfan8.wixsite.com/faceinosteosarcoma/faceinosteosarcoma/i-know-what-you-did-last-summer?fbclid=IwAR2DrGyzKb6TDidUqWMD75rjv_OZmWCTrnVgTVwfut4zQOE65JjEWFQRw7A

I’m defiantly missing Cardiff and my life that I had there and I’m missing not living with Claire and Dom but I now get to live with 26 incredible people who push me, love me and grow me greater than anything I’ve experienced before. Yes there are times its hard and challenging because all those flat mate issues you face can be escalated at times but its great.

Today is my birthday… and in all honesty its something I massively struggle with for a number of reasons but for now I’m just going to go into a few of them. I have found birthdays hard since loosing many cancer friends… one of whom I shared a birthday with. I felt for the longest time that celebrating was rubbing it in the face of those who didn’t survive. Its been a hard reality of survivorship guilt which I have also written about today (see below). I have also struggled with the idea that people should celebrate me mainly because I’ve felt like aging wasn’t something to be celebrated because it proved I’ve lived longer than my cancer friends. I have been happy to celebrate others and love others birthdays but not my own. I also find parties really hard unless I am the one controlling them or helping with them (I needed a role to even get me to them) this has been because of my stupid chronic fatigue always being an issue at parties…. Anyway all this is stuff I’m working on currently and now about to go to a party fit for me (we are all wearing pj’s) which I haven’t organised with my girls who are kindly forcing me to celebrate because they want to show me that I’m worth celebrating.

So hope this helps you understand where I’m at currently….

Welcome to the more honest Wen x

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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.

Speaking at FYSOT

Aghhhhh! That’s kinda how I feel right now… this is defiantly a little bit of procrastination right now…. but its also good to update my blog so that the points in my talk that I point people to are at the top right??

So here it is https://hybridhumanlife.wordpress.com/2017/08/04/immunology/ thats the post about what its like to have no immune system

This is the post about my Chronic Fatigue… https://hybridhumanlife.wordpress.com/2017/01/13/chronic-fatigue-a-cry-for-understanding/

I’m going to be updating this blog more over the next few weeks as I know Ive got a huge amount of content ideas and I need to just get on with it and stop procrastinating and putting off doing it… It helps no one it being in my head.

Right now back to speech writing!!

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