Overcoming anxiety about going out

[Gingergus]

Since I started on immunotherapy in January, I've had a few setbacks. I've had episodes of really bad pain - diverticulitis, I've had to have fluid drained from my lung and around my heart - both made me feel very unwell. I now have atrial fibrilation which seems to be a side issue of lung cancer and it's quite scary when my heart rate goes a bit haywire, though it is controlled now with medication. The Pembrolizumab isn't too bad, but makes me feel a bit wiped out for a few days, no energy etc.

The result is that I'm afraid to go far from home, or my hospital, in case something happens to make me feel unwell. It's boring to say the least - I used to be such a busy active person with a lot of interests.

Has anyone else found this to be a problem , and how did you cope with it. I so desperately want to feel reasonably normal and get on with life - a holiday would be great, but I'm so anxious that I'm afraid to book anything.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Gingergus , thank you for your post . I am sorry to hear you have experienced such debilitating side effects from your immunotherapy treatment Pembroluzumab . Immunotherapy can cause inflammation to various organs in the body , including inflammation of the heart , myocarditis and can also lead to pericarditis , a build up of extra fluid in the space around the heart , which you have had drained. This can affect the electrical system of the heart and affect the pumping action . Myocarditis is often treated with high dose steroids and can lead to a pause or discontinuation of treatment. I am sure your oncologist will discuss how your treatment has affected your heart and what the plan will be moving forward.

It is understandable that you feel anxious about leaving the house .it is important to take things slowly it is common to become less active due to side effects . Exercise has been shown to help people better tolerate , respond to and recover from lung cancer treatments. It is natural to feel a little nervous about being too active and getting out of breath , light exercise can have real benefits can have real benefits to both physical and mental health , You can find suggestions of how to increase you physical activity in our Living with Lung Cancer booklet p,45-54 , . If you require any further information or support you can contact one of our nurse , this is a free and confidential service on 0800 358 7200.