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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The start of something NEW!

Like always, its been a while. Sorry for that- its not that I’ve not had things to say it’s more been is it the right time to say it…. and for most things it still isn’t- but one day i’ll get round to then hundreds of blog post ideas and getting some of the things said that I’ve wanted to for a long time.

This blog post is about CHANGE! Something that I massively hate and have done for the longest time… but something feels different this time and I can’t quite put my finger on it- maybe I will as I keep typing. Stood in the kitchen of my friends house last night I said about how I really don’t like change and doing something new always terrified me yet I hadn’t felt like that moving out recently as I began the process of  moving from Cardiff to Hereford (I’ll explain more later).

Growing up I defiantly was someone who needed a routine and I was someone who was always busy- every night of the week I had something… and I also would often cram in swimming before school too… routine and business kept me going. Deciding to go to college, Camp America and University was all stepping out of my comfort zone and embracing change… but it was hard! Then after I got sick even the smallest of changes unsettled me- I remember how fearful I was when anything changed. Going on my first EMCT trip I remember telling my social worker I didn’t want to go, and returning to University seemed like an impossible challenge. I think getting ill worsened my outlook on change because my life changed so drastically in an instant… I went from a normal university life to one surrounded by drip machines and months of isolation. Knowing how quickly you can loose it all really rocked me for a long time.

Things however, have finally changed…. and although I still don’t like change but I’m learning to embrace it and run with it… and having faith is helping massively with that. Don’t get me wrong I still have concerns and I’m still nervous about the change but I also know that I don’t need to worry about every little thing. I’m putting faith into my faith, and knowing that whilst I’m unsure on how I’m going to manage financially or with the practicalities of life in a new place- this should not and will not hold me back from giving it a good old go!

I’m leaving the life I’ve built for myself in the wonderful city of Cardiff, and its hard. This city has been home for the past 9 years, its where I met some incredible friends through uni, hospital and church. It’s a place I got to call my own, a place of safety and a place where I’ve got to be me. This past few weeks I’ve said goodbye to some incredible flatmates, my stomping ground where I’ve been based for at least 6 of those years, my favourite coffee shops and favourite places and I’ve had moments of sadness in this- not knowing if i’ll get to call these places mine again… (I’m not saying I won’t be back its just if I’m back it will be different). I’m also going embracing the fact that I could be called anywhere after Academy and I’m not ruling anything out yet…

Last night on my way to my last rehearsal with church I got teary… goodbyes have never been a strong point for me, I find them hard and I will often push those I’m close to away in preparation for it (I know this is not the way to do it but its a habit I’m yet to break- so I’m really sorry if I’ve done this- its most defiantly a me thing and recognising it is a huge step for me…so please accept this as an apology). The team I’ve had the privilege of working along side at church have been well incredible… they have taught me so much, not just in faith but in skills and in leadership qualities. They have helped me transform from a broken girl who felt like I could bring nothing to one who can get stuck in, own the vision and now I’ve been training others up too. This team have been key in that transformation they have pushed me when I’ve needed it and helped me manage my health when I’ve needed that too. I honestly wouldn’t be where I am today without them and the hours of love and prayer they have given me. I’m going to miss them all massively especially Sam and Kyle who have rocked production managing and have pushed me further than I ever thought possible. Last night they gave me a lovely send off with a couple of gifts including beautiful orchid which I’ve named ‘Mac Toshi’ after the beloved big mac.

Mac ToshiThey also prayed for me which is a moment I don’t think I’ll ever forget. They spoke such wonderful words about me, from the transformation that has taken place in me, to the glue I’ve been for the team… They also prayed into my future and gave me some key things to hold for the days ahead. Yes there will be a hole in the team because I’m leaving but that will soon fill with the guys stepping up and new people joining the team. I’m going to have a huge hole in my heart for this team tho- and knowing that I’m not ever coming back to the same team because everyone grows and new people will be added and others will be sent out… it does however make me immensely proud of the team that has been built here. Thank you Production team its been a blast!

I’ve got 2 more Sunday’s in church but because i’m sailing next week, which feels immensely perfect as I did my first time trip the week before I moved back to Cardiff to start University again- now i’m sailing the week before my new course. This has meant some goodbyes have already had to happen… I’ve said some goodbyes to those who I’ve known for years and thats been tough… please make me accountable to staying in touch its something I’m not great at but hope this time i’ll do better at it. I move to Hereford on the 10th September and I’ll be taking part in a leadership course with my church called Freedom Academy… it’s a ten month programme (2 days a week) designed to grow our;

  • understanding of the Christian faith
  • relationship with God
  • sight into the role and development of leadership (insight and experience)
  • growth personally

I’m super excited and think this change feels different to others because it feels so right for me, because I now have an unshakeable faith and because I’ve learnt to embrace change not fear it! I also know its the right time for me to do something new otherwise i’d just be forming a rut and one that i’d never move on from. I’ll be living with lots of people from all over and its gonna be tough and very challenging. If you pray then i’d love prayer covering  a few things

  1. My finances for the year- I’m stepping out into the unknown until I’m there I won’t know what the impact on my finances there maybe so be praying that i’ll have enough to afford to live and pay rent and course fees.
  2. Friendships- for great bonds to be formed in and out of church.
  3. Health- for my immune system to not be effected too much with the change of environment and my energy levels not to dip as much this winter.
  4. Existing Relationships- for me to navigate the best way to stay in touch with people (I’m not the best at this).
  5. Personally- that I’m able to open up, trust and give this year my all.

I’m so grateful for all the things that have helped build me to who i am today and I’m looking forward to see the change that this year has on my life further down the line… I’m looking forward to reviewing how I action some of this and seeing how I grow. Thank-you to every single person that has encouraged, challenged and pushed me I wouldn’t be facing this new challenge if it hadn’t have been for your input.