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Am I Going Bonkers?!

Let’s chat about Mental Health and Cancer. They seem to go hand in hand; you can’t fight this evil disease without it impacting on your mental health, or at least I couldn’t.

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 an 80’s Christmas Disco in June, that’s why we had a Winter ball, that’s 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 forgo the bad.

Start talking

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mac Howard moderator
    2 weeks ago

    Anita, Thank you! One of the hardest aspects for me was and is the feeling that I am the “only one.” It is wonderful to hear so much of my journey echoed from another.

    Great read. Thanks again.
    Mac (site moderator)

  • Anita Brown moderator author
    1 week ago

    Thanks Mac, it is always comforting to know that we aren’t alone on this rubbish journey isn’t it?

  • Mac Howard moderator
    1 week ago

    Anita, It is comforting. I think there is strength in shared trial.
    Mac (Site Moderator)

  • naydajp
    3 weeks ago

    Thanks for these words…May the Force be with you always…[yes I too feel bonkers]. Blessings!

  • Anita Brown moderator author
    3 weeks ago

    Hi Naydajp,

    Glad I’m not the only one who is “bonkers” It’s funny how we cope with everything, sit it? But I guess the moral of the story is that we do always cope, one way or another. Hope that all is well with you? Love and hugs Anita

  • Anita Brown moderator author
    6 months ago

    Hi Nancy,
    Thank you, I do try to be as honest as I can, I want to speak about the things that do affects us and it isn’t all rainbows and unicorns is it? Some days are dark and horrid and some days are fabulous. Bladder cancer plays and messes with our emotions so we need to keep speaking about it, wishing you well x

  • Brandy78
    1 year ago

    Thanks for sharing, so helpful and honest!

  • Anita Brown moderator author
    1 year ago

    Hi Brandy,
    Thank you for taking the time to read it ❤️

  • ayesha7
    1 year ago

    Sometimes it’s better to try to focus on all the blessings and positive things in your life than to focus on what you are losing.

  • Anita Brown moderator author
    1 year ago

    Totally agree with you Ayesha, I think I had just got to the stage of having had treatment for 2 years and then having PET scans every 8-10 weeks, my poor mind was all over the place.. My Macmillan counsellor told me that it’s fairly normal to have a breakdown once your treatment stops, as whilst having treatment you are so focused on staying alive and getting through them, you don’t tend to process any emotions surrounding treatments or prognosis.. and I guess the bottom line is I won’t ever be cured, as small cell bladder cancer is aggressive and fast growing, and had already spread into my lymph’s, liver and bones.
    Up until this moment I had always been so positive with regards to my prognosis… especially considering they didn’t think I would still be here, and was having counselling to come to terms with my death.. It was just a small blip and am happy to say that I’m coping well, with all my health issues and happily making memories with my friends and family, thank you so much for commenting

  • nancycccslp
    6 months ago

    I appreciate the honesty that it’s not all love and roses. Sometimes it sucks; it all just SUCKS. And that’s ok.

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