So 2 yrs after being diagnosed with stage 4 low grade NHL it finally decided to spread a bit more, this time behind both eyes in the eye sockets. Now was the time for treatment 6 rounds of chemo rituximab etc. What an experience its not something I want to go through again too soon. So now I have had a full body CT scan last Weds and am waiting for the results, depending on these will determine whether they've done the job for now or whether I need more treatment. It's on my mind constantly, every little ache or twinge is that something else. I am trying to keep my mind of off it but it's not easy and nobody really understands how you feel, sometimes it's very lonely and now I can't sleep, I even took a sleeping tablet and I'm still wide awake at 3. 30 am. Just felt the need to share with you all as you will understand how I am feeling, thanks for listening x
Hi Izzywoo, well done getting through and now it’s out of your hands. From my many years on this journey I found that I developed a Teflon approach…… regardless how little or widespread the mess is there are tools to clean this up.
22 years, many many scans and then the waiting for results has galvanised my mind set in that I could not control results….. but can do my best control the whirlwind from developing between my ears……. control this and the steppingstones forward are simpler to navigate - let’s look for a good result.
I found this article an number of years ago that may be helpful:
What Is Scanxiety and How Can You Manage It?……. Choose Hope
The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments can take a significant toll on your emotional and mental wellbeing.
Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.
Acknowledge your Feelings
Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your scanxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.
Talk about It to the Right People
Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.
Practice Mindful Living
Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.
Distract Yourself
Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you laugh. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.
Ask Questions
Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything – from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean - don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.
Plan for the Worst Outcome…
Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help you regain your power as well as your optimism.
…but Visualise the Best
Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your scanxiety.
