Hello, this is my first post, but have been using this site since I got diagnosed with AML (chromosome 15) in Nov 2019.
I am 36, live in Scotland with my husband and 6 year old. I went through 3 rounds of chemo which finished in Feb 2020, and went into remission. I was supposed to have 4 rounds, but the last round was dropped due to risk of Covid-19. My consultant was happy and said the 4th round was not always needed, but more of a standard practice.
Since then I have been in hospital most weeks to care for my first Hickman line wound, which was infected and line taken out in Dec. I had uncontrollable bleeding, which meant my wound was big and deep, and after 6 months it is almost healed. I also got a bacterial infection at the wound, which lead to a different fungal infection from the antibiotics. That and also dental issues and fatigue in general, meant even though my treatment stopped, I still feel rather under the weather, whilst homeschooling during lockdown.
Last week I went to my GP for a blood test as requested by Haematology. I remember being very lightheaded that day, as I have been eating very poorly the previous two weeks due to dental issues. They also had issues getting blood out, which is not uncommon for me. I now have received a text to ask for a repeat blood test. The surgery will not explain why when I asked, which is making me incredibly anxious. All the possible reasons are flashing around in my head, and I cannot help but feel the word Relapse floating right in front of my eyes.
I have no idea what I am asking. Just reassurance I guess. It has made me feeling really down. I feel absolutely exhausted mentally.
Hi and welcome to the Mac Community and good that you have been lurking over your treatment and I do hope you found some useful and supportive information.
Sorry to hear the challenges you have had post treatment - This is not that unusual to be honest and infections in Hickman lines - tell me about it.
The phrase run before you can walk comes to mind, your body has been through a lot and with you not getting enough fuel (food) and with the kids at home trying to do homeschooling - I am not surprised you are struggling.
I see you are also in Scotland, with regards to dental issues emergency treatments is being done so do check this out don’t suffer where you can get help.
Repeat bloods? Please do not read into this. Over my 21 years being treated for NHL I have had blood tests go missing, not enough taken so rejected, results were inconclusive or contaminated, the wrong tube was used, the list goes on......
Just ask when you get them done and if you are still concerned call your contact nurse.
Try it to stress the stuff you can’t control, ask questions where you can...... you have enough to stress about having the kids at home and living the post treatment life.
Oh good you are getting treatment and it’s amazing how we see so much goid on people and helps us give back in our own way.
You do need to get some protein in you as this will help over come some of the fatigue as protein is fuel. Did you know that our brains use up 20% of our daily protons/energy intake, add stress then this goes up to 40%....... then add cancer..... no wonder we are wiped out at times.
I found this great quote used in another area of the Community - “The ‘cancer anxiety train’ is sitting in the station........ but we can only get on it if we go get a ticket”
Anxiety can be triggered by many things like blood tests, clinics and scans.
I found this great little arrival - have a look and see what you think.
Always around to listen ((hugs))
What Is Scanxiety and How Can You Manage It?
February 26, 2018 - 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 guffaw. 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.
Frustrating about your wound, I hope they can get it under control quickly but good news about the blood test...... yes good news.
