The Real World Is Scary
The treatment is over, you’ve been discharged and got the all clear from the full body scan, the nightmare is over, but is cancer harder to cope with when it’s all over? Is it ever over?
I meant to write this blog a long time ago, last year infact, however it somehow passed me by. When I was in hospital undergoing treatment I had numerous doctors, nurses and or specialists in to see me everyday, keeping track of my situation, my wellbeing, every single day. Everyday I was being monitored and looked after, whether I was receiving chemotherapy or radiation or any type of treatment I was being monitored closely. Even though I was so ill, as long as I was in hospital receiving treatment I felt like it was either killing the cancer cells completely, or at least keeping them at bay. I felt protected, I felt safe, I felt like I was in this bubble of care, being kept safe and protected, out of harms way, I would think to myself that seeing as I was getting round the clock treatment I would have to make it out ok, I couldn’t think about it any differently.
I’m going to word this as polite and mildly as possible, but I hated getting chemotherapy. I would look at the bag of chemicals hanging beside me with disgust, and think to myself how much I hated the chemicals being dripped in to my body, yet it was those chemicals that were keeping me alive, that were giving me a chance, giving me hope to stay alive. I couldn’t wait to get it all over with, to get my treatment finished and to get out of hospital and let my body recover. I longed to be discharged, to be allowed to go outside again, to breathe fresh air, to be free, and when that day came I was so relieved, relieved to be out of hospital after so long and to be just going home.
I didn’t actually realise what was about to hit me, I didn’t realise just how difficult it would be on a mental level being home. Very soon after getting home I found out how scary it felt being out of hospital, the treatment had finished, I couldn’t help but wonder would the cancer start attacking me again straight away because my treatment had finished.
That bubble of care I was protected by was gone, I didn’t feel safe anymore, I felt vulnerable and it wasn’t easy to cope with, even though I absolutely hated the thoughts of being back in hospital I did feel safe there.
I also noticed that it seemed to go very quiet when I got home, people that were in touch with me so much while in hospital seemed to back off to give me a break at home to recover and have time with my family, it makes perfect sense. What I came to realise though was that I was so scared when I was discharged from hospital, I actually felt like I needed more support than when I was in hospital due to that feeling of vulnerability.
It got me thinking, is cancer harder to deal with after the treatment is over and you’ve been discharged and sent home? I had to use all my physical and mental strength to get through and win the battle against cancer, twice, but at the same time I was facing a physical and mental battle at home also.
I might look fine, I might look well, but right now I’m battling so many different and difficult issues on a daily basis as a result of what I have been through, I need every bit of support I can get.
*I can’t stress enough how important after support is for post cancer patients for so many different reasons. One of the main reasons I found was due to the fear, the fear of relapse that comes after the treatment has finished.*
Well this is a fairly obvious point to make, but I can’t quite describe the immense feeling of “relapse fear” subsequent to being discharged from hospital last year. As soon as I was finished with treatment, discharged, and back home that’s when the fear started, that fear of relapse. I had so much time on my hands, all the questions you don’t want to think about start floating around in your mind. Will the cancer return? How long will I make it before it returns? Will I make it to my birthday next year? Will this be my last Christmas with my family? If it comes back will I be able to beat it a third time? How would my family cope, my relatives, my friends? The list goes on and on, and on. The fear of relapse is all too real but it is something that gets *slightly* easier with time, but of course it will never fully dissipate, but that’s ok, I can live with that.
I remember not too long ago when my girlfriend and I were chatting about it she was telling me how she remembers when I first got out of hospital I just sat on the couch barely wanting to move, just sat stiff, too scared to think about moving or going outside, how I looked so scared to be home, how I looked and felt vulnerable. I didn’t have doctors or nurses fussing over me, checking up on me and I wasn’t receiving treatment, I felt open to being attacked again and it was tough. I had no immune system after all the treatment, so I couldn’t really go anywhere or do anything for fear of picking up something that would put me back in hospital, I wasn’t allowed to go to the cinema, or on public transport, or anywhere busy or with a lot of people, nor was I physically able to either anyway as I was shattered from the treatment, I was housebound. So although being isolated in hospital for such a long time was finally over, I quite quickly discovered that the issues of isolation weren’t over.
After being discharged from hospital after my bone marrow transplant last year I had to stay within 20 minutes of the hospital in case of an emergency so I was living in my girlfriend’s family home close by, I wasn’t allowed to go home to my own family home in Co.Wexford obviously which was difficult but at the same time I was incredibly lucky to have my girlfriend’s family home to live in, and I was SO well looked after
I guess fatigue and not having an immune system have been the biggest factors in feeling so isolated for the last few years, the last year especially. Normally I would be so active, I would be working full-time and training with a running club, so I’d be chatting to a lot of people on a daily basis, but that all changed when I took ill .
The fatigue meant I didn’t get to take part in much over the last few years, I’d be too tired to meet people or go out in the mornings or evenings, I was also severely restricted on what I was allowed to do as I was extremely susceptible to picking up infections. Of course the winter was a write off too because I basically had to stay away from everyone and anyone to keep myself safe, and sure I was sick for most of it myself anyway.
I do what I can now to help with feeling so isolated, I try and meet friends for a cuppa, I volunteer at my local Parkrun in Tymon Park, I go home to visit my family and friends, but I still find it quite tough, and quite lonely too. I spend way too much time on my own but it’s not exactly by choice! It’s difficult enough with my family and my main network of friends from home being so far away, it’s harder to see them. It’s also obvious to point out that people have their own lives, jobs, families, kids, girlfriends, boyfriends, so it adds to the difficulty of meeting up with people, especially considering I’m not great in the mornings or evenings either due to the lingering fatigue. I tend to prefer to meet people during the day as it’s easier for me, easier for me to talk, to listen, to have the energy to hold a conversation without yawning in their face every two seconds!
Just this weekend my girlfriend and I went to the cinema for a 7:30pm movie, 7:30pm! It’s the first time in over 3 years we have gone to the cinema *so late*, I’ve had to work my way up from going at 4pm to where I am now, 7:30pm and trust me it wasn’t the easiest decision to decide to go that late, so I guess that makes you a little more aware of where I’m coming from. I’m building myself back up to normality again day by day but it is a slow process.
Maybe the title of this blog wasn’t the most accurate title, but in a way I wanted to make a point, a point about how difficult life can be post cancer, how the battle certainly isn’t over and how important post cancer support is for people.
Although going through cancer was incredibly difficult, there is still a lot to deal with on a daily basis both mentally and physically, it all just takes time, and I’m working on it.
Returning to work, and joining a running club will certainly help me fully alleviate the isolation issues, it’s a work in progress. I try to be patient but patience is not easy and I certainly don’t always convey it, but it is key.
Please Live Your Life Now
Go for a walk or a jog 🙂
Do some Yoga 🙂
Go on a trail walk with a loved one and enjoy some fresh air 🙂
Enjoy food 🙂
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