Q&A with Dr Chris Meek

How do I stop worrying about sarcoma coming back?

It is helpful to remember why you worry. Getting a diagnosis can really shake your beliefs about your body and your health. You might go from assuming that your health is good to assuming it is not. Before sarcoma, if you get an ache, you see it as unthreatening, but after, if you get that same ache, you worry it’s a recurrence.

What might be happening is that your body remembers the mental pain and trauma of the diagnosis. So, the mind and body make a plan. They start to check for signs, think a lot about symptoms, and stay aware so we’re not surprised like last time. Worrying becomes a way of your mind and body trying to protect you. Stopping worrying is therefore a very difficult task, but there are ways to overcome increasing worries.

Often worrying thrives in environments with limited distractions. For example, when we’re alone, when we’re not very active, or when life is quieter. Worries can thrive when we don’t talk about it, and the more we focus on them, the bigger they become.

Whilst we cannot stop the worrying completely, we can make changes to make it easier:

• Make plans with friends or family to keep yourself busy
• Move more, for example exercising more
• Share the pressures you feel with other people (this may help to put less pressure on yourself)

People tell me I am so strong, but I don’t feel it. What should I say back?

This comes up so often, and people I speak to struggle with it. It might be that there’s a cultural expectation for you to stay strong, too.

One of the reasons this phrase does not help is that underneath it is the assumption that if the person with sarcoma is outwardly jolly or calm, then that must be because of some inner strength. However, the way we present on the outside is not always how we feel on the inside.

It can be easy to hide how we feel to colleagues, friends, and family. When someone says we are so strong, that can make us feel we have to be this way. You might think “they seem to like me this way – better keep it up”.

Setting a conversation goal

You might respond differently based on your relationship with the person. If it’s someone you do not see often or are not too close with, your goal might be to get through the conversation and move the topic on. You could answer with a three-step strategy of acknowledge, reassure, distract. For example:

Them: “You’re so strong!”

“Thanks, that’s kind of you” (Acknowledge)
“I’m coping well, trying not to dwell too much; it just works for me” (Reassure) 
“How was your weekend, anyway?” (Distract)

For people that you are closer to, or will likely see repeatedly, you might consider your goal as something different: to help them understand how you really feel. As above, often it is the person misreading your emotions based on your appearance. We probably don’t want to be ‘get through it and move on’ with these people.

It’s difficult to prepare a script for this; you might be talking to a grandparent or your partner and have in-jokes or patterns you follow in conversation. You could answer by challenging what they think they know about you and sharing something new with them. For example:

Them: “You’re so strong!”

“Thanks. I don’t actually feel strong, even though I look it sometimes” (Challenge)
“Since the surgery, I have found the pain really hard” (Share)

We cannot control how the other person responds, and it might not have the impact we hoped, but you are allowing them to understand you better.

I am leaning on other people so much now, and I hate it. How can I stop needing to do so?

This affects many of the people I see. Maybe you were used to being the one on the other side, helping when others needed it. You might also find yourself more emotionally affected by everything that has happened, which can mean appearing more upset or irritated around others or needing to talk to someone.

Maybe before any of this, you’d manage your emotions on your own – and that change is strange and very hard to come to terms with.

The adjustment to sarcoma is not just about the fact that it is a cancer; it is also about the personal challenges and relationship challenges it brings.

There are two different parts here. We have the ‘leaning so much on others’ and the ‘I hate it’ bit.

The ‘leaning so much on others’ bit might mean not being able to get to the shops independently or not being able to hold back emotion around others. The “I hate it” bit is more about the sense you make of it. The sense you make of your situation can impact the way you feel about it.

I guess you might have tried to focus on the ‘leaning so much on others’ bit. Maybe you thought if you could reduce the amount that has changed, and get back to not needing so much support, that would help. Through building up your fitness levels, for example, you might be able to reclaim more independence as you are able to do the things you used to do, and don’t need to ask for help as much. You can also build yourself up emotionally and get more used to handling strong feelings and being around people.

However, sometimes it is the case that we can’t build up as much as we would want, and we need to use the help of others. Coming to terms with this can be really hard.

Reframing

It can also be helpful to focus on the “I hate it” bit: the sense we make of asking for help. One skill from Cognitive Behavioural Therapy is ‘reframing’. That is, you try to spot thoughts like “I hate it” and try to bring in a reframe – another way of looking at it.

“I hate how useless I feel not being able to drive”, may become “I appreciate the time I spend with you in the car”, for example. The NHS has a useful guide to ‘reframing’ on the Better Health website.

If you continue to struggle with these feelings, there are lots of other places you can turn. It can be helpful to consider mentioning this to your GP, your team at the hospital, or the Sarcoma UK Support Line how you feel. They might be able to suggest good places to help, and the talking it through with someone can be an important first step.

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