Scanxiety

Yesterday morning. 367 days after being told I had bowel cancer again, I’m getting ready. I head to hospital. I have a scan. I also get wear a gorgeous gown 😂

I’m a bit sweaty. I’m a bit ratty. I want to vomit but there’s nothing to come up as I’m not allowed to eat.

Scanxiety. It IS Very Real.

 

 

 

 

The year has moved so very quick already and I reflected on all the advice I was given and my previous  cancer experience. The best advice is to take each day one by one. Don’t think too far in advance, try not to overwhelm yourself. I like to think I do an OK job. Except with scans… 13 years of them, I know the drill. I will feel sick, weepy and highly anxious on scan days, then for the weeks following until appointment day.

And some say its irrational fear, but hey! Here’s the proof that it isn’t… I now have a stoma!

There’s something that you need to try to master with cancer: patience. A cancer diagnosis may as well come with a bloody great warning label: it is a waiting game. Waiting for your initial diagnosis results, your cancer pathway upcoming scan, or your five-year checkup after treatment is complete… waiting is literally every step of your journey and one of the most stressful aspects of living with a diagnosis. Trust me, I’ve done it all before. Which in a weird way can help me this time round.

Here’s some of my tips to coping with, what us in the cancer community refer to as, scanxiety.

It is OK to be scared or angry, try to focus those feelings. These sneaky emotional responses can totally creep up on you. Don’t beat yourself up, they’re really quite normal, you’re human after all. Try to let people know you’re apprehensive, either in a chat, text, hell, a Facebook status! If people around you are aware you have these feelings they can support you, or not take it personally when you hide under a duvet and tell the world to bugger off.

Try to find humour. There’s a dark humour that is in the cancer world, which can help. It breaks the ice with family and friends who are scared to offend you.

It’s also a great way to bond with the NHS team. We tried three spots to get my cannula in yesterday. It hurt and it was frustrating, but we focused on the funny side of it all. I mean, my veins bent her bloody needle!

Ask for help if it is overwhelming you.  Are you a person who’s anxious most or all of the time? If so, pre-empt a wobble, and seek out avenues of help before these feelings become too much. I recently helped someone in hospital and he told his team he had anxiety challenges and they adapted themselves accordingly. Spoke a little softer, chose their words a little more carefully etc. Let your oncology team, consultant, or scanning team know how you’re feeling beforehand.  When I told my radiographer I would cry in the scan, (I always do), she gently reminded me she believed in scanxiety, they see it every day. She then made small talk about my socks to distract me. She probably wouldn’t have if I didn’t let her know I would struggle. But talking about my socks helped. They have pictures of my dog on them you see…

Also consider if you need ongoing therapy and/or medication. 

Reach out to your peers / support groups. There are people out there that “get it”… OK so maybe you don’t know anyone else who’s had cancer scans well enough that you feel you can talk to. I guarantee you can talk to strangers who can give you some support along the way.  It reduces the loneliness, makes you feel less isolated and can provide little motivational nudges from some unknown, yet awesome, people on a similar path. For me this is Instagram or twitter, where there is an entire community who support each other without intruding in their daily lives. Also consider professionally facilitated groups, that your med team / Macmillan Nurse can advise about.

                                                                                                                                                      Empower yourself. Take as much control as you can. This could be something simple… Some people wear make up, some wear a special item of clothing, some have a little ritual. For me, it’s wearing heels. Every other day you will normally find me in flip flops. Scan day, you will find me in heels. It is something I have done for many years, that a beautiful group of bc patients all used to do on scan days so we felt our bumbandit chums were with us (except Peter, but he did mentally wear heels 😂). A small but important bit of empowerment. I own this and whatever the outcome, my heels and I have got this.

Distraction. May sound basic, but immerse yourself in your non cancer life. You’ve let people know your a tad anxious, now try to focus on the non cancer part of every day, taking breaks from thinking about cancer is incredibly important. For me this past week at work has been ridiculously busy plus a full on weekend, this was good. The next few weeks look to be crazy busy at work still which will help (though will still raise their own stress dramas!) and we’ve some fun stuff planned. Plus I have some very exciting stuff planned the night of my results appt day (more about that later). The weeks between scan and results can suck, so any distraction is good. Bingewatch a new TV show, invest in a new (big!) book, see friends and family, head down at work. The important thing is to do something you can really get immersed in. Distract your brain.

Move! Exercise can help. We all know it. Exercise is beneficial to us as it produces endorphins, yet so many of us don’t do enough of this free self therapy. Although you may not burn fat like running or gym workouts, do not underestimate gentle exercise (walking, yoga etc) which can still produce endorphins. These fellas help you sleep better and reduce stress in the most natural way possible.  Some of us may have physical limitations, and you have to find something that works for you, but please, get moving. I’m doing the #Stoma66 Challenge, where I am running for 66 days in a row, and it really is having an affect on me, I can feel it. And I start to look forward to my daily runs now! If you’re on a cancer pathway, ask your Macmillan nurse if any of your local gyms have support plans (free PT to physically rehabilitate you).

Meditation. This can help calm a monkey mind, and help manage stress and side effects. It really is becoming key advice from the NHS to cancer patients. There will be local classes available, books or apps to help. Do you have a fitness watch? It probably has a function that monitors your breathing for 3-5 minutes. USE THIS! Breathing is very important to encouraging a calm, meditative mind. I went on a yoga and meditation weekend when I was fit enough and this has set me up with some great techniques I use a lot.

Dr Google isn’t always your friend.   The www can be a fab place to empower yourself with info and meet the aforementioned peers. But with the vast array and amount of info online, it can be easy to become a little obsessed and also not look at the right things… I started looking up what other cancers lynch syndrome means I’m at high risk of yesterday. Got myself in a massive tizz. Speak to your team, GP or dedicated charities / organisations for legit advice or stats, spending a lot of time researching online can actually do more harm than good.

You can’t control the waiting game, the scanxiety may just be par for the course, but you can take action and help yourself to feeling a little less alone and calming your mind.

One key thing to remember: what you’re feeling is normal.

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