Am I Going Bonkers?!
The pressure to stay positive
The pressure to stay positive is unbelievable, and somehow we feel that we have failed when the darker days appear. You are fighting for your life, you don’t know the outcome, how can that not mess with your head? I have felt that if I didn’t stay positive, people would perceive me as being weak, and I didn’t want to let anyone down, let alone myself.
Two sides to every coin
The truth is, we all need to have “down” days, “black” days and “not so good days”. Why? To fully appreciate the ‘fabulous” days, you know the ones. The ones where you are looking amazing AND feel amazing, the ones where people compliment you on how well you are looking. The days where you get EVERYTHING done that you wanted to, and more. These days are totally awesome, BUT just like a coin, there are two sides to it, so to have the fabulous days we do need the “not so” fabulous ones.
The dark days or whatever you want to call them – suck! I got so low and just kept thinking “If only it were sunny…” or “I will feel better tomorrow.” Slowly, I began to notice that I had lost interest in baking, which I love doing, and my old friend ‘Music’ wasn’t much help either AND my favorite TV shows couldn’t hold my attention. I guess I knew then that something wasn’t right!
I made myself a mask
So…did I ask for help? NOPE! that would be far too easy. Instead, I tried to cover it up. I made sure that my family never saw me upset, and that I was always happy and smiley. I had made myself a “mask,” a face to cover my face, my face to the world! Inside I was distraught, I was told that I was going to die, I was told I was terminal, and yet here I was alive, and not wanting to seem ungrateful, I felt I had nothing left.
That last statement may surprise you, as I know it did me. You see, we had LIVED these last few years, we had spent our savings on making the most of the time we had, and now we were struggling. I know my husband would never say it, or at least never admit to thinking it, but I wondered if he actually thought “she should be dead by now” because I had! And I am pretty sure some of my friends had!
Thankful but lost
So here I am, grateful that I am alive, thankful for every new day, but totally lost. I had to give up my job with the treatments I was having. I worked as a home carer, and I loved my job. I was always looking after others, and I thought that I would be satisfied looking after our home, my family and my fur babies. In truth, it bored the living daylights out of me!
I had lost my identity, all I was now was “the lady with the pink hair who should have died by now”. I felt awful that I wasn’t happier that I was still here. No, I felt guilty. Guilty for living the life that no one thought I was going to have, that’s why we had a 80’s Christmas Disco in June, that’s why we had a Winter ball, thats why we did everything in a rush, because I am not meant to be here!
Can you see how all of this messes with your head? I should have reached out, there were people I could have called to help me, but instead I carried on, hoping that the next day I would feel better.
I was tired
Weeks went by, a month perhaps, I came down with a UTI or at least I thought I had, it’s sort of hard to tell with a bag! Anyway, I took my BOP (bottle of pee) to my GPs, and sure enough I had a UTI, and they were going to send it to the Laboratory. The following week, I was told there was a prescription for me at the chemist. It was for a certain antibiotic that doesn’t work for me, hasn’t worked for me for 6-7 years. I called them up, and to be honest I was tired. Tired of having to call them to tell them, tired of always having to explain to them that I didn’t have a bladder, so no I wasn’t in pain, just tired.
I think after the last two years, my poor body has been through so much, and my mind was kept busy with treatments, making memories and living as much as I could. We literally tried to cram as many days out in between treatments, as we could. Days at the fun fair, the beach, having meals out, spending time with friends, and now I had nothing to do, nothing to occupy my mind, which was very much alive.
So back to the tired bit…I could feel tears running down my face, warm tears, I couldn’t stop them from falling, and then I began to sob. I was crying down the phone to the GP, but she kept telling me that she knew “what was best for me,” and that’s when I hung up!
I wanted to scream
I wanted to scream down the phone at her that she didn’t know “what was best for me,” and if I left it to her then, there is no uncertainty, in my eyes that she would still be giving me prescriptions for UTIs, just like she did when she didn’t take me seriously about “having something wrong” that wasn’t a UTI; it turned out to be terminal cancer!
I sat and cried and cried, and my wonderful chocolate lab, Sherlock (or Choppers McGraw) came over and sat by me, with his ears droopy and sad. I called Macmillan and asked to speak to someone, still crying. I hated how vulnerable I was feeling, I felt broken!
Blurting everything out to the nurse
My Lovely Macmillan Nurse called, and I blurted everything out, I was tired! Tired of all this rubbish, of fighting, of living and of putting on this happy face. I couldn’t take it anymore. In the whole of my journey, I have never felt that low ever! I have had my moments, but not like this.
My Macmillan Counsellor came round the next day for a visit. We sat and chatted, and I was able to get everything out, or at least I had started to.
I felt drained but a bit better
I woke up the next day feeling emotionally drained, delicate and sensitive, and yet I also felt a bit better. A teeny weeny, bit better underneath the cracked surface, deep, deep down, I could see a flickering of light at the end of the tunnel.
I don’t have to put a face on anymore
That time seems months ago now, and yet I know it’s not. I know that I don’t have to put a face on to anyone anymore, especially not my loved ones. I have been assessed by a psychiatrist; they say I have PTSD and am having a “depressive & anxious” episode.
I know that they (my family) can cope, you see, once I was told I was going to die, I made a promise to myself that I would be really nice to everyone I loved so that when I did “pop my clogs” so to speak, they all would have “good” memories of me and not ones where I’m snappy or crying or even feeling a little sorry for myself.
I didn’t want them knowing how much it hurt to know that, one day, sooner than we all would like, I will not be here, and that thought is “totally indescribable”. I don’t think that there is a measure of “pain” invented that could cover just how I feel when I think about that.
Now I was healing
My son, Ash, sat with me on my bed and held my hand, telling me that it was “ok” to feel like this, and that I should just let it all out. My husband, Tim, held me so tight and so close he made me feel safe again.
I guess the good thing about hitting “rock bottom” is that the only way left is to go up, to gain your strength again, to take time to see the good in the world. I took pride in myself that I was coping positively and happily. I now realize that it is so unattainable, and that you can’t keep it up. You need to feel the emotions that you are so scared of in order to be a “whole” person, you cannot just take the good and for go the bad.
The moral of this long story? If you have been feeling how I was, just empty and nothing left to give, then you need to start talking, to anyone, to a professional, a friend, to your doctor. Get the help to help you understand what is going on in your mind.
Our mind is a wonderful thing, and we need to take care of it just as we would our physical body, so take time out, read a self help book, watch a trashy movie, be kind to you. Just know that this journey we know as cancer is a horrific journey at times, and we have to acknowledge these times, then let it go, and it’s ok to not feel positive and happy all the time.
What is your cancer experience?