Hi, it’s been a while since I have posted anything. My 16 year old daughter was diagnosed with HL in December 2023 and I felt like my world had ended. Staging was confirmed as 2 and treatment started shortly after. Midway scans were good showing the metabolic change the oncologist hoped to see and OEPA changed to 2 months of COPDAC which ended last week. Whilst this is all really positive I still carry a lot of fear which is probably because I feel so helpless.
We now have to wait until June for the next scans to hopefully confirm remission and this feels like such a long wait in limbo.
I do need to add that my daughter has been amazing, a true warrior throughout. She has her fears also which I guess is natural but she is amazing and I could not be prouder of her.
If anyone can offer some advice I would be eternally grateful.
Hi GrahamLq and great to hear that your daughter’s treatment has gone well……
As Lolie has said, the wait is unfortunately normal as an early scan can show false positives.
Advice….. trust in the treatment…. if her mid way scan had been better in any way concerning they would not have reduced the intensity of the treatment.
So don’t let the what if’s? define you and the family…. you all have to define the way forward. As the well used phrase says …… “The winter has gone the summer is coming”….. enjoy it
I have been on my incurable NHL journey for over 24 years now so lots count of the scans I have had, most were good but for me some were not so as I relapsed a number of times over the first 15 years.
In the early days I sat with my great CNS and she was very honest “Mike, you can stress and fret as much as you want when you are coming up to scan time but the reality is you can throw all the stress and anxiety in the world at this and it won’t make any difference to the outcomes but the one certainty is - stress does make you ill…… control the battle between the ears and only worry when you are told there is something to worry about”….. and she has been spot on over all these years.
I found this article very 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.
