Supporting the

Neuroendocrine Cancer Community

A cancer diagnosis is a lot to get your mind round. It brings a whole new set of complexities to try to understand. Whilst at the same time, trying not to dwell too much on the fact that things can change at any time.  We have no hard and fast pathway to follow either telling us what may happen and when – and nobody warns you about the massive pile of guilt that may land in your lap. 

Because it isn’t only you that is affected by your cancer, you bring it into the heart of the home.   

As well as dealing with your own diagnosis, and trying to understand what this now means for you as a person, you then have to tell those closest to you to and deal with their reactions, which can come in many forms.  Not only do you have lot to process; it can be a heavy weight to carry around at times. It’s like you have, in effect, been handed a time bomb without a timer attached.  

Cancer can make you appear stronger, in public anyway, as you feel you cannot show your true face to everybody. I know it took me a long time to accept the fact that I didn’t have to be strong or stoic or just simply resigned to the “inevitable”, whatever that may be.  Learning to accept what I cannot change included lots of ranting, raving and crying behind closed doors, and to be honest still does at times.  

Acceptance is hard, with any type of cancer, especially when you know you are stuck with it.  It manifests itself into many shapes and forms, can be very isolating, and you never know when the next bout of pain or guilt or despair or sadness or anxiety will hit you.  Such as never being able to fully commit to plans, just in case, cancelling at the last minute because your body says no on the day, arriving at the party only having to leave because your body waits until you arrive to have a strop, checking out facilities en-route before embarking on a journey, the list goes on…

As a result, guilt can easily lead you into the trap of not being entirely honest about how you feel physically and mentally.  I experience pain on a daily basis. It is part of who I am now and I tend to underplay it, which I know is not a good thing, especially when talking to my medical team.  There is also the fact that after living with this for 6 years this is now ‘normal’ for me, and it gets harder to express how I really feel.  I don’t want to worry or impose, or even dare I say it, acknowledge that there may be new issues that need to be dealt with.

Talking about the physical aspects is not always straightforward especially with Neuroendocrine Cancer, but being honest about how the physical makes me feel emotionally is not that straightforward either. Some days it is hard to know which way to turn, especially as I think I have a tendency to bury my emotions.  Asking for help isn’t easy at the best of times. Relinquishing a little control is even harder, and I don’t want to be seen as not being able to manage.  

I feel guilty asking for help. Sometimes I leave it longer than I should. I don’t want to show my vulnerability and I feel I have to be seen to cope. But really, I shouldn’t feel guilty about asking for help when I need it – or for being honest about how I feel. I’m the one living with Neuroendocrine Cancer – guilty as charged.