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 and deal with their reactions, which can come in many forms. Not only do you have lot to process; it is a heavy weight to carry around at times. It’s like you have, in effect, been handed a metaphorical time bomb but without a timer attached.
A cancer diagnosis is a lot to get your mind round. It brings a whole new set of complexities 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 to tell us what may happen, and with neuroendocrine cancer, 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 right into the heart of the home.
Cancer can make you appear stronger, in public anyway, as you feel you cannot show your true face to everybody. As I have said in previous posts 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.
Acceptance is hard with any type of cancer, especially when you know you are stuck with it. It manifests in many shapes and forms and can be very isolating. You never know when the next bout of pain, guilt, despair, sadness or anxiety will hit you. I feel guilty about never being able to fully commit to plans, just in case, or cancelling at the last minute because your body says no on the day, or arriving at the party only having to leave because your body waits until you arrive to throw a strop. Then there is the checking out facilities en-route before embarking on a journey. The list goes on…
As a result, guilt can also lead you into the trap of not being entirely honest about how you feel physically and mentally. It is part of my coping mechanism to mask my daily pain and I tend to underplay it, which I know is not always a good thing, especially when talking to my medical team. There is also the fact that after living with this for over 6 years this is now ‘normal’ for me, but that makes it 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 either, especially with Neuroendocrine Cancer, and being honest about how I physically feel and the emotions resulting from that is not straightforward either. Some days it is hard to know which way to turn, especially if, like me,you have a tendency to bury 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, as having managed work, a home and family for most of my adult life I am more than capable of managing a bit of ill health… So sometimes I leave it longer than I should. I don’t want to show my vulnerability; I feel I have to be seen to cope. But in reality I shouldn’t feel guilty about asking for help when I need it – or for being honest about how I feel. I’m living with the uncertainty of Neuroendocrine Cancer – guilty as charged.
Kath Lewis 