Struggling

Hi Gettingthere I see this is your first post on the Community and welcome across to this little corner of the site.

The cancer journey, regardless what type of cancer is full of twists and turns....... and yes Scanxiety is indeed a real thing. I have been on my incurable cancer journey for over 25 years so I have had plenty time to develop the ability of living in the moment and getting on with life......... with the main mindset that my cancer would not define me but I would always define how I lived.

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.

Hi Thehighlander

Thanks for reaching out and taking the time to message me.

Your message really uplifted me.

Just before my second scan I developed a tickle in my throat and cough occasionally- so that has caused extra anxiety.  I never coughed when they found the cancer early. I am telling myself it is probably nothing serious. 

thank you and I wish you all the best in your cancer journey. 

The battle between the ears is the one battle that we can all fight…… everything else that goes on in our body is mostly outwith our control.

Over my first 15+ years I relapsed multiply time with the longest partial remission being about 9 months before I went back on the treatment rollercoaster….. now I am coming up to 9 years since my last treatment so loving the freedom.

It’s all about developing trust in your body…. You may find it helpful to make a cuppa and have a look at this great paper

After Treatment Finishes - Then What?

by Dr Peter Harvey as it highlights the post treatment milestones. Do come back and tell me what you think about the paper.

I would also say that 'talking' to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Hello Gettingthere,

I had my right lung removed 10 years ago now (on 10th June 2014). My initial stage was 2a and I had adjuvant chemotherapy purely because of this and the fact that pathology detected cancer cells close to the main tumour which upgraded it to 2a N1 M0.

I also developed all kinds of what I thought were very worrying symptoms, especially around scan time when it was all upermost in my thoughts, and felt very anxious just as you do. It is impossible not to have such thoughts but in my case they all fortunately were unfounded. I do recall in particular getting a very ticklish cough for some considerable time.

It's very difficult dealing with this but I did find I became more accustomed to it over time. I hope you will find it possible to do this also, especially with Thehighlander's excellent advice.

I wish you all the best for a prolonged succesful outcome.

All the best,

Derek.

Hi Mike The Highlander

I think the MH cancer inflicts is the hardest - but I am telling  myself thoughts are just thoughts not facts.  

I am so pleased for you coming up to 9 years since your last treatment - I love to hear good news stories. 

Huge thanks for sharing the paper -  I’ve read it 3+ times. I def lost my confidence after diagnosis.   The para on uncertainty was really helpful re re recalling surgeon and docs/nurses helpful comments.  The surgeon said she was 99% sure it wasn’t going to come back as they found the C so early!!  I kind of dismiss what she said!! 

In the near future I want to do some voluntary work when I can (I work FT).  I also promised myself to do more excercise look after myself more.

thank you once again!

Helen Getting there 

Hi Helen Gettingthere great that you found the paper helpful..... it is a great tool for now and in the future. Even all these years later I will pick up the paper and have a look through it.

When I first looked through the paper I used it to become more proactive and used it as a vehicle for change and life improvement.

So I got a note-book and put pen to paper.

So I set a few pages per subject heading and started detailing the things I/we had done already to move life on in each area and then started to set some achievable goals to work towards. 

When I/we achieved the first goal on each lists it was ticked off and then a new goal was put at the bottom of the list.

By doing this I/we could actually see our progress and celebrate achievements. When I say celebrate I do mean giving ourselves treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

Thank you - I certainly will find a way to talk to people in person

Hi Derek

Thank you for reaching out and sharing your experience with cancer.  It’s great to hear your treatment was a success. I like to hear about people’s positive experiences. 

Fortunately my tickly cough has gone now - but I do find myself getting overly worried about pains/aches etc. thehighlanders advice was just what I needed right now & I have saved the paper to refer to.

It is reasurring to hear that over time you managed your worries around scan times. And I hope to feel less anxious as time goes on. I get my results 1 August. 

Thank you once again for reaching out and wishing me a prolonged successful outcome !

Helen Gettingthere 

Hi Mike (Thehighlander)

HUGE THANKS - this is just brilliant!!

I’m going to copy paste and print your message & print the document you sent. My focus isn’t great.

I’m going to work on living with uncertainty- that’s a biggie for me.

I eat a lot more healthier now to help boost my immune system.

we went to a music festival (camping) on Thursday last week - came back yesterday as sleeping on the ground was too uncomfortable (my side still feels weird after the operation almost 11 mths ago).  I had a lovely moment - calm - grateful to be alive - here right now. It was a great feeling.

thank you !