I thought I would share my experience with mental health in the cancer world. I never suffered with mental health issues, well that was before I was diagnosed with stage 2B Hodgkin’s Lymphoma then it all changed. The day I had been waiting for had arrived on the 30th June 2015, I had finished treatment and had been told I was finally in remission after nearly 2 years of difficult treatments but after only a few weeks I found things were changing from the way they had been during treatment.
The support I had been receiving was slowing down, the hospital appointments became less frequent and then I had a sudden feeling that I felt completely alone. I was honestly terrified of what would happen next.. Yes, I was done with all things cancer, the needles, the surgery, the sickness, everything but I didn’t feel like I had imagined I would feel.
I remember having a little cry because I was so scared of the unknown, its like you have to re-learn how to live the life that didn’t involve cancer and I honestly didn’t want to. I still wanted to be in the cancer world. The depression of missing your old cancer life and the anxiety of trying to piece it back together still haunts me. I obviously feel very lucky and happy that I am still alive today and that I got through the chemo and a stem cell transplant but life after cancer and trying to get back into the normal world post treatment seems impossible.
“Having anxiety and depression is like being scared and tired at the same time. It’s the fear of failure but on urge to be productive. It’s wanting friends but hate socialising. It’s wanting to be alone but not wanting to be lonely. It’s caring about everything then caring about nothing. It’s feeling everything at once then paralysingly numb.”
Dealing with anxiety and post traumatic stress is the hardest part although when I think of post traumatic stress disorder I think of soldiers, warriors, heroes.. I never think of myself. You constantly live in fear with whether the cancer will comeback, every little ache, symptom or the sounds and smells things that bring me back to that moment I was lying in a hospital bed having the poison that is chemo being pumped through my veins. Loud beeps, like phone alarms remind me of my chemo pump going off through the night and those thoughts make my heart beat faster. Every single day I have memories that take me back to certain days of my cancer journey.
There has been so many days that I haven’t wanted to wake up and I’ve just wanted to stay in bed because I felt so alone, no-one could understand how I was feeling. I just wanted to crawl up in a ball and cry. The last couple of years, suicidal thoughts have come into my head which obviously scared the hell out of me. Would life be better if I wasn’t here? Then my mom wouldn’t have to worry about me like she does everyday. Thankfully these thoughts have become less and less as the days have gone on but I’m always scared they are going to creep back up on me.
I always loved going out to see friends and family but now its a completely different story, in the past year or so I have hardly been outside as just the thought of being with a crowd of people absolutely terrifies me and I get really panicky and start crying. I fight with some sort of anxiety every single day and I try and manage it but it’s always there bubbling up under the surface.
The photo above was taken about a month ago on one of my worst days. I remember having hardly anything to eat, I just wanted to sleep and shut the world away. I had been crying most of the day until my mom brought Thumper upstairs which cheered me up a little.
I think it’s a common misconception that once treatment is over everything is fine, you go back to work and back to a ‘normal’ life but that’s just not how it works for us cancer survivors. I think the hardest part post cancer is purely to survive trying to find ways to relate to people and be a part of regular conversations.
I can’t tell you how many times people have been talking to me and I will just zone out, I just won’t be interested in their conversation just because it’s not cancer related. They will be talking about something they did last weekend and I just want to shout back at them that my friend has just relapsed or I have got a check up in a few days and that I’m worrying about every single pain I’ve had for the past month so please stop talking about the nice meal you had. This may be really selfish of me but cancer is always in my head and it’s not easy to relate to people.
Even though I’m done with treatment it doesn’t mean its any easier for me, probably harder. Writing this post hasn’t been easy and so many times I have come to carry on with it and just broke down in tears because sometimes its just hard to think about & dealing with so many side effects cancer leaves you with does get me down but I will always get back up and fight because that’s what I do every day. I am happy, healthy and I’ve got so many supportive people in my life who I love and I will not let my mental health win.
Mental health has been in the public eye lately because of the Heads Together campaign and I love that more people are talking about it but so much more needs to be done to educate people. If you are struggling please remember you are NOT alone, please reach out and talk. The emotional and physiological side of blood cancer is so overlooked as is mental health in general and this really needs to change.