I was going to rest a further week before commencing my blog again but this subject triggering me to write a blog to drive awareness. Your normal is not our normal and effects a lot of people with cancer or a serious illness. Let me explain my experience.
A few years ago I was working full time, travelling around the world, being tortured by an ex-army fitness instructor 2-3 times a week, running a business and taking life for granted. I was running around like a busy little bee and no task was a challenge. I enjoyed clubbing with friends and could work my way through every shop in a shopping mall. I could eat and drink most things, whenever I wanted without fear. Wow what a perfect life to have, and a normal life to a healthy person.
I actually look normal! well not sick, however I have gained poundage through my illness and I tend to have black rings under my eyes at times but overall I look like me to everyone else. I do manage to present myself to people like there is nothing wrong with me and people can easily mistake my persona as a healthy woman.
I feel like crap every day and with all the drugs in the world, I don’t see any improvement just a disease that is being managed. I miss my life but never complain as I am truly grateful to be here, yet my life is not normal. With the best will in the world, I do try to attempt a normal life. I could honestly cry now trying to explain the difficulties that I can experience on a daily basis. My symptoms are not daily issues but an hourly issue and no hour is the same. I can wake up with symptoms and can go to sleep with symptoms. I am no longer driving because the motion of a car makes me feel worse and it’s like a wakeup call to my bowels. I would imagine the pedal action of a car would intensify my GI symptoms. Walking is another problem, the motion makes my symptoms worse and when you struggle to walk due to spine issues it’s not ideal situation. I am painting such a lovely picture here but these are only some of the issues that carcinoid cancer patients experience.
My life is in fear of symptoms and all that goes with it. Just a simple thing like a friend coming over is a huge obstacle to me. I never know how I am going to feel or whether the bathroom is going to call me. Your family/friends tend to understand but it’s embarrassing for me because I don’t want to be constantly running to the bathroom when I have guests, therefore I arrange visits when my husband is home. He can entertain if I have to slip away, although one of my best friends had to see herself out the other day as my husband was at work, (Thanks M).
My life involves around medical appointments and even a simple thing like that I am fearful of how I am going to get there and if I am going to make it. People don’t realise the challenges we have and what appears normal actions to you is not normal to us. One example is going to a coffee shop for some coffee & cake, yes it is straightforward but not for me. I am already thinking how am I going to get the coffee shop without creating symptoms, is there going to be a bathroom, am I going to get in the bathroom or will there be a queue, will it require one or two visits to the bathroom, what should I eat or drink because it’s likely to trigger more symptoms, am I going to be able to chat because of symptoms, am I going to get home symptom free. You’re possibly thinking are her symptoms due to anxiety and the answer is no it is carcinoid cancer/syndrome.
Nipping here and nipping there is easy for everyone else but for carcinoid cancer patients it’s not. I don’t think people fully understand the disease and the health challenges that go with it. Since we look healthy and don’t demonstrate a body of skin and bones, the perception is there is no barriers and that is not the case. We are like boy scouts preparing for every trip or visit, where’s the fun in that. We didn’t choose this life, it chose us and everything that goes with it. Just remember because you physically look ok doesn’t mean that there are no barriers in living a normal life. Remember your normal is not our normal.