1st April 2106… that was when I first saw my tumour. Since then I have had 2 lots of palliative chemo and 3 radiotherapy sessions. Oh and let’s not forget the removal of my bladder, lymph node and woman’s bits…
19th August 2017 was the date it was removed and it was the date that my life slowly started getting better. Obviously it did take a while, you can’t go though a major operation without having to get used to a new normal, without coping with the pain and disruption, wondering if your life will ever be the same again.
I know this as not only have I been through it, I have supported others through it too! They didn’t believe me, on week 2,3 or 7 that their life would get back to “normal” or that one day they would have half an hour of fun, without thinking about their stoma and bag … but you do.
You learn to live with everything that life throws at you, physically and mentally! Physically, it is hard. The body hurts and aches, you may have “accidents” where you are left covered in pee! These being you down, mentally!
There doesn’t seem to be an end to it all! Lots of tears of frustration are cried. You should be grateful that you are still here, alive and cancer free… but you aren’t. You mourn for your old life… the happy, carefree life before cancer.
Times goes by… you cope, you learn to live your new life, adapting to it all the time.
People comment on how well you look, on how well you seem to be. They don’t know your worries, your fears, the pain beneath each smile. The force you have become in order to push yourself everyday. They just see the smiles, they see you as “fixed.”
The truth is that we aren’t “fixed” we aren’t who we once were. So many problems that lie beneath surface, so many worries.
I need to get a job, yes, I get a benefit to help towards living but because I am not dead, this benefit, which has kept us afloat, may not be granted to me because I have chosen to get off my bottom and am trying to get physically fit… so we may lose that money… and then what do we do?
You see, I’m in that “limbo land” where I am not cured and nor will I ever be… and some days are amazing and I am filled with life, other days, it’s enough that I walk the dog and then take to the sofa with a blanket.
People perceive me as being “well,” as being fit, as being fixed and better. People don’t want to hear about the realities living with an incurable illness and other health issues, they don’t want the truth..
They don’t want to hear how you were woken up in the night, with horrific pains in your legs at 2am and how no matter how hard you tried, you couldn’t get through it, you wanted to scream and punch things.
They don’t want to know that today, you are struggling walking up the stairs or that today your body had decided it has had enough.
They don’t see the tears of frustration and anger when you can’t do something so simple it really messes with your head. It’s like having a “jumbled up instruction book” as a brain and that nothing makes sense today!
You worry over how you are going to live the rest of your life, how you will survived and what type of job you can get that will understand that some days you can barely make it out of bed….? But you see, you don’t show that side to social media, you don’t show the tears, the pain, the nightmare days….. no one wants to see that!
I wonder if any of my friends
wonder why I am still here? I do! It’s funny once people see you are doing “well” they forget about the flip side. The side that was so distraught because you were going to die! And now you aren’t ……it seems!
Some days I want to just disappear, go somewhere new, where no one knows me… go “ghost” for a while… not have to deal with issues like money… shopping… I can’t do that though.. I have a family I love, a Husband whom I adore and am so very grateful that he has stayed by my side ❤️ I know some people haven’t been that lucky.
So am I moaning or trying to educate people? Once you have cancer and treatment stops.. well you are just “left.” Left to try and figure it all out on your own, left to try and put the new pieces of the puzzle back together, left because there is no one for you to lean on anymore.
I recently got discharged from “Macmillan’s” care, and I understand why, I do not, right now need palliative care… I am so very thankful for the support that I have received over nearly 3 years and I know that when I need them again, that they will be there ❤️
But what do I do now? Who can I turn too? Or maybe it’s time I forget about “cancer”, pull myself together, get a job and some responsibility….. I feel like the biggest fraud going …
Love & hugs