Managing Isolation

Research has shown that the isolation component of BMT and CAR-T treatment can be difficult for some patients. Everyone will manage this differently. Some people may appreciate the space to themselves whilst they are undergoing treatment, whereas other people may have a range of difficult feelings, or may develop difficulties with their well-being, such as symptoms of anxiety or depression

It can be difficult to be confined to a room that represents your illness and treatment 24/7. Some people may feel isolated from others, or feel out of control not being in their usual surroundings. It can be difficult if you feel physically unwell during your treatment, especially when you are not surrounded by your usual things, your normal sights, sounds, tastes and touches, and also away from loved ones and physical comforts that may ease any distress caused by this.

However you feel is OK. Your emotions are your emotions: You are the person who knows them best, and who knows how best to manage them. BMT and CAR-T treatments are known to be physically and emotionally demanding, and it’s OK not to be OK.

It can be helpful for some people to have a think about how they are going to manage isolation prior to their admission. You know yourself best, so thinking about the things that normally help you when you are in a stressful situation is a good starting point. The below are some tips that might help guide your thinking based on our experience of what other patients have found helpful, and based on what research has found can help people in similar situations.

1. Routine. Keeping some form of routine can boost well-being and help people to have a sense of control and independence. The routine may need to be continually adapted depending on how you feel physically and your energy levels. This is perfectly normal and not a sign that you are “failing” or “not doing a good job”. The routine doesn’t have to be complex, but could include things like having a wash and getting dressed on days you feel able, or sitting in a chair for your meals.
2. Stay active. Staying active will reduce your risk of infection and help maintain your muscle tone, which will help you with your physical recovery. Your activity levels may need to be adapted throughout the treatment, and it’s good to review this regularly with your healthcare team. Your daily activity may involve things like getting out of bed a couple of times a day when possible, and engaging in any exercises in your bed or chair that the healthcare team recommend.
3. Keep up with the outside world. This can help you to avoid feeling isolated from your normal life outside of your illness and treatment. There are a number of ways of staying connected:
   • Stay connected with loved ones. Virtual connections can be helpful (e.g., video calls, emails, online gaming, etc.) whilst your face to face connections are reduced. Be careful with unregulated chat rooms and websites (those not associated with a regulated healthcare body), as these can have inaccurate or misleading information.
   • Stay connected with the world. Some people find it helpful to also stay connected with events in the wider world, e.g., the news, to help them to feel connected to things outside of themselves and their illness.
   • Think about your mobile phone package and whether it covers what you’ll need in hospital if you will be using your phone more often than usual. Phone signal is not always strong in the rooms, so bringing in other media to stay in touch may also be helpful, for example, a tablet or laptop that can connect to the hospital Wi-Fi.
   • Watching the television may be a good way to keep in touch with what’s going on, or a way of distracting yourself from what’s going on (e.g., by watching your favourite film or TV programme). There is a television in each individual room for patients during isolation.
   • Podcasts and webinars may also be helpful if you aren’t physically up for reading or are struggling with your concentration.
   • Writing a blog or using social media can help some people. Notice the effect of doing this on your mood, and only proceed if you are finding it helpful: Sharing your private life on social media means that others will comment on what you post, which sometimes can cause distress as well as positive feelings.

• Distraction. Sometimes you may want to distract yourself from the here and now if the here and now feels overwhelming, or if you want to have a break from thinking about your treatment and physical health. Think about what interests you, for example, puzzles, magazines, books, knitting, CDs, etc. Try to choose things that you can easily put down as you may not have as much energy as you normally do.

• Emotional care kit. Some people find it helpful to pack an 'emotional care kit'. This can help if you feel overwhelmed during your admission. There are some restrictions on what can be brought into hospital so, if you have any queries about specific items then it is best to check this with your healthcare team.

• Entertainment. Anything that you can bring to hospital to help you to pass the time will be helpful. Books and favourite films may help you to lose yourself for a while in something that you enjoy. Audiobooks, podcasts and listening to music can be a helpful alternative to reading if you are struggling with concentration.
• Get creative. You may not have much energy during transplant, but having a think about your hobbies and interests, and whether you can adapt this into something that you would be able to bring with you and enjoy during your transplant could be helpful. Some patients bring light crafts to keep them entertained, such as colouring, knitting and drawing. This can sometimes help whilst being away from loved ones, for example, some people make cards or pictures to give to their children or grandchildren when they are missing them as a way to keep in touch.
• Express how you feel. Talking to others, writing it down, artwork (e.g., drawing) are all ways to communicate your feelings, which can help you to feel less isolated and more connected to others. This in turn may help to reduce any feelings of distress that you might experience.
• Day-night cycle. It can be difficult to sleep in hospital, both due to the unfamiliar bed and sensations (noises, smells, etc.). In addition, the medical team may need to check in with you every few hours, or certain treatments may need to be conducted overnight. However, it is still important for your body to try and keep track of your day/night cycle, for example, keeping the blinds open during the day to get natural light, and keeping screens and other lights to a minimum during the night.
• Keep a balanced perspective. During your treatment it is likely that you will have good and bad days. It can be helpful for some people to notice the positives as well as things that may be more difficult. Some people find that writing positive affirmations and placing them around their room helps, or repeating phrases or words that help to bring a sense of calm during stressful situations. It can be helpful for some people to spend a few moments each day thinking of things that bring gratitude into their life, even when in a crisis, for example things that they have, things they can do, or what they appreciate.
• Explore your taste. Chemotherapy, radiation, and other drugs during your treatment may temporarily effect your sense of smell and taste, which can lower your appetite and lead to weight loss. Keep trying different foods where you can, for example, salty and sweet foods with different textures to see what works for you right now.
• Set expectations and focus on the end game. Remember the reasons why you are having the treatment, and take the pressure off yourself to “be OK”. You are going through something very difficult and it’s OK not to be OK. Think of the things you can achieve in the shorter term that can give you some focus, for example, getting out of bed and sitting in your chair, or going down to concourse to have a coffee if you are able to.
• Have a say in your care. It can feel like day to day decisions are taken out of your hands during treatment. Some people feel like they hand over their whole life to the medical team, which can be tough. Have a think about the things that you might be able to keep control of, basing this upon the things that are important to you and that you value. For example, you might want everyone to call you by a nickname, you might want to establish a daily routine (e.g., having the blinds open by a certain time each day), or you might want to keep a pen and paper close so that you can write down any questions for the medical team. Have a think about what would be helpful for you and let the team know so that we can support you with this.
• Managing uncertainty. There will be multiple stages during your treatment, and it might feel to you at times that it is uncertain how things are going to progress for you.
  • It is normal to have days where you feel less hopeful about the future. Sometimes your thoughts might be based more on your feelings rather than the reality of the situation, and reminding yourself that any difficult feelings will pass with time might be helpful.
  • Notice if you are having “what if” thoughts or are worrying about things that “might” happen: There is always a chance that these things “might not” happen.
  • It can be helpful to take each day as it comes, rather than thinking too far into the future.
  • If you are struggling with your thoughts and feelings, talk this through with staff. There is always the option to speak to a clinical psychologist if you think that your thoughts and feelings are getting out of hand. Here is a link to a Wellbeing Self-Evaluation Tool - Keeping Me Well which can help you to think about whether you are struggling to a degree that suggests you might require some additional psychological support
• Managing family and friends.
  • Your transplant experience is likely to have an effect on other people in your life. If they are struggling with the impact of your illness on them, then this can in turn become difficult for you to cope with too.
  • It might be helpful for you to remember that you may need all of your energy to help you to get through the treatment, and you will have less energy to support other people in your life.
  • You may want to have a think about who will visit you and when, and make sure you prioritise this around your needs and what will be helpful for you to recover, rather than what they might prefer.
  • Remember that visitors can be comforting and a helpful link to the outside world, but if you are feeling poorly then it can also feel too much to have visitors.
  • Give yourself permission to set limits on how long visitors spend with you if it’s feeling too much.
  • If you are going to be away from young children who cannot visit you, then consider writing each other diaries and letters that you can occasionally swop over to keep in touch.
  • More information about managing friends and family can be found on the family and loved one's pages. 
• Give yourself a break. Isolation is tough. Be kind to yourself, be patient. It’s OK not to be OK. It’s OK to have a cry. There’s no such thing as doing it wrong or not feeling right about it.

Another psychologically vulnerable time for people can be when they leave the hospital after their treatment, but then need to make a multitude of adjustments to their home to minimise ongoing exposure to germs. For example, it’s likely that you will be encouraged to minimise exposure to germs and dust, minimise being in crowds, limit visitors and screen them so that they don’t come over when they are sick. Sometimes even a family pet like a dog may not be allowed whilst your immune system is suppressed. This can be very difficult when the dog may be like one of the family and be a huge source of comfort.

Sometimes people might not be well enough to work, which can contribute to financial strain. Loss of work also leads to a loss of routine and also a loss of social contact. If your job is important to you then it can sometimes feel like you are losing a sense of yourself or your identity to not be working for a while.

Remember that humans are social beings and meaning makers: We feel at our best when we have a sense of purpose and belonging. Creating a routine can be helpful to include structure into your day, and this will likely help with your well-being. Things like routines around bathing, exercising, entertainment, and light household chores like folding laundry can help with focus with what may seem like endless days. It’s important to keep up with routines wherever you can, but also be flexible for times where you need to take it easy.

If you feel well enough, you could use your increased time at home to learn a new skill or indulge a new interest. For example, learning how to play an instrument or learning how to cook – if your taste and smell have changed too as a result of treatment, then this may help you to experiment and discover what you like again too! Equally, it’s OK if you don’t have the energy to do this. Everyone’s journey is different and everyone’s recovery will be different. It’s important to listen to your body and do what you feel able and no more.