“I had terrible anxiety after my cancer diagnosis”

From initial feelings of shock and worries about the impact on your loved ones, to concerns about finances and end of life care, the mental load can feel overwhelming.

"Anxiety is an extremely common and completely logical reaction to receiving a terminal illness diagnosis," says Claire Haime, Social Worker at Marie Curie's Liverpool Hospice. "Most people we see experience anxiety on some level, and the vast majority will find that it impacts on their daily life to some extent. It's an entirely appropriate response and one you shouldn't feel embarrassed about."

Anxiety can cause physical symptoms

As well as symptoms such as racing thoughts, intense feelings of fear and worry, and intrusive thoughts about worse case scenarios, anxiety can come with an array of physical symptoms, too. These include breathlessness, nausea, an increased heart rate, and feeling restless and fidgety. But everyone is different, and each person's experience of anxiety is unique to them. "There's a wide spectrum in terms of the range and intensity of symptoms people have, from simply heightened feelings of worry to more extreme things, such as thoughts of self-harm – which is unusual, but it can happen," Claire notes. "It's important to stress that if at any point you feel you're at risk of hurting yourself or anyone around you, you should go to A&E or dial 999 immediately."

Talking about emotions isn't always easy

If you're living with a terminal illness and experiencing anxiety, you may find it difficult to discuss how you're feeling. But, as Claire points out, being open and having that first conversation is the most important step you can take on your journey to managing your anxiety. "When people come into the hospice for a session with a member of our Patient and Family Support Team, they're not committed to anything. Sometimes, just having one conversation is all some people need to feel better. For others, they might decide they need more regular support. We're always guided by each person's individual needs, and we offer everything from counselling and art therapy, to sessions with clinical psychologists". Claire also explains that, unfortunately, there's still a stigma around taking medication for anxiety, even though it can make a huge difference to your quality of life. If you're experiencing anxiety, Claire recommends making a call to your GP in the first instance, so you can chat through the support and treatment options available to you.

"My whole body was trembling"

Abbie, 29, a single mum of two, is living with stage 4 breast cancer and experienced severe anxiety after she was diagnosed in December 2022. For her, a combination of the right medication and mindfulness techniques have made a big difference.

"I had never experienced anxiety like that in my life," says Abbie, remembering the time immediately after her cancer diagnosis. "My whole body was trembling. I didn't want to leave the house because I was just so scared."

Abbie had initially gone to her GP during the summer of 2022 with an intermittent burning pain in her armpit, but it wasn't until she discovered a lump in her breast later that year that she was referred for further tests.

"My GP had said that if there were any changes to my armpit or breast I should get back in touch, but when I found the lump, I was dealing with the sudden break-up of my relationship, so I just wasn't focused on it at all," reflects Abbie. It was only later, after her partner had moved out, that she began to notice the lump again. "When I was lying down I could feel it. I thought, 'Oh my God, that's got bigger. That's definitely got bigger.' I went back to my GP and she referred me to the cancer clinic, but she didn't suspect cancer. She said it was just to rule it out. It was December by the time I got an appointment. When they examined me, they didn't seem concerned at all. It was only when I had an ultrasound that the tone in the room changed. Everybody went quiet."

The doctors took biopsies and on 22 December, Abbie returned to get her results. "They told me it was grade 3, oestrogen positive cancer. It had spread to my lymph nodes, which meant they had to send me for more scans to check it hadn't spread anywhere else."

"I had all the scans within two weeks. It felt never-ending and was the worst Christmas ever. I had really bad anxiety and had to have a lot of help with the children because I just couldn't concentrate on them. I was throwing up and couldn't eat. I had to ring my GP and she gave me diazepam (a medication often prescribed for the short-term relief of anxiety symptoms) to try and calm me down."

In January, Abbie got the news that her cancer had spread to her spine. "At first, it was really overwhelming, and I was feeling very negative. But once I'd educated myself about living with cancer, I realised that if I keep thinking negatively, that's how my body will respond."

Abbie sought help from her GP and tried different medications, until she found one that helped to ease her anxiety without any unwanted side effects. "I had taken anti-depressants before and they made me feel numb, which I didn't like. But the medication I'm taking for my anxiety doesn't do that. I still feel like myself." She's also found meditation, mindfulness techniques and complimentary therapies, like reiki, have helped her to manage her symptoms. "You have to find what works for you," says Abbie. "If one treatment doesn't work, keep trying things until you find one that does."

Abbie has also found it helpful to talk about her anxiety with others in a similar situation. "I didn't think anyone else felt this way, because I'd never heard anyone talk about anxiety before. But then I posted about how I'd been feeling in a Facebook group for people with breast cancer and I had lots of ladies popping up saying they'd experienced exactly the same thing. Peer support has made a massive difference."

"There's support out there for everyone"

Adele Burgess, Spiritual Care Lead at Marie Curie's West Midlands Hospice, also recognises anxiety as something that affects most people living with a terminal illness. She stresses the importance of being open to different types of support. "People often think that they have to be religious to talk to me, but that's not the case," says Adele. "My role is about focussing on the individual's spiritual wellbeing, regardless of their religion or cultural background. It's important to realise that you're not restricted to one type of support. Whether it's counselling and more traditional treatments, to art therapy, chats with a spiritual advisor, complimentary therapies, or a combination of all these things, there's something out there to suit everyone."

The key message is that it's important to acknowledge how you're feeling and be open-minded about treatments.

Although it still flares up sometimes, being prepared to try different therapies and medications has helped Abbie to manage her anxiety from day to day. "I suffer from 'scanxiety' sometimes. If I have a medical appointment, like a scan, coming up and I'm worried about what the news will be, that can trigger my anxiety. But it's nowhere near as bad as it was at the beginning. It's still there and I definitely have my down days. But I try not to focus on that. I think the mind is really powerful."

Our experts' top tips for coping with anxiety

1. Get outside if you can 
   Whether it's a walk in a park or just sitting outdoors in a garden, being outside in a green space can improve your mood and reduce stress, making it easier to deal with anxious thoughts.
2. Practice mindfulness
   Techniques such as guided meditations, colouring activities, and mindful eating can be very effective. You can find examples on both the MIND   and NHS   websites.
3. Try keeping a diary
   Writing down thoughts and feelings can help to identify patterns in anxiety around terminal illness and grief  . It can also be helpful to write about what's going well and the things that bring you joy, to help you focus on positive thoughts.
4. Talk to someone about how you feel
   Even if you don't always want to discuss your feelings in depth, letting someone else know that you're experiencing anxiety will help you feel connected to those around you and less alone in your worries.
5. Breathing exercises can help
   They promote relaxation, keep you in the present moment, and can reduce the physical symptoms of anxiety, such as an increased heartrate and feeling irritable or restless. Here's   a simple one to try. And here's another, called 'box breathing'  .

For further support, take a look at our Depression and Anxiety   page and Our Coping with a terminal illness   page. You can also order or download our Living with a terminal illness   booklet.

Call our Support Line on 0800 090 2309 *Monday to Friday 8am to 6pm, Saturday 11am to 5pm.

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