The period leading up to treatment will involve meeting with different professionals, attending numerous hospital and day centre visits, and undergoing tests or procedures, some of which can be invasive or uncomfortable. This can be an overwhelming time.
Sometimes our patients report that it can be difficult to take in all the information given to them during their appointments and often people need time to process this. The same can be true for any family members. If after an appointment you realise you have not understood what you have been told, if you need to clarify something or you want to know more information, it is really important that you speak to the healthcare team. They will be more than happy to discuss this further with you.
Patients can differ in the amount of information they want to receive about the treatment: for some, they want lots of details as this can help them to feel more in control, but for others the information can feel overwhelming and they want less. However, it is important that you have enough information available so you can make an informed decision about your treatment choices and whether or not to proceed with treatment.
Typically, those undergoing these treatments will have few or no other curative alternatives and therefore some patients report feeling that they have little choice about whether to have the treatment. However, it is still important to discuss this through with your doctor and healthcare team. Times that can be particularly challenging for patients leading up to treatment are waiting for donor matches, cell production, waiting for results of any tests, and sharing your diagnosis and relaying information about your treatment to loved ones.
Prior to treatment it is common for patients to experience anxiety, sadness and low mood, irritation or anger, and have difficulties with feelings of uncertainty about the treatment or their future. Patients sometimes report feeling a loss of control of their lives and their body.
Common worries are around treatment side effects or complications and whether treatment will be successful and quality of life after treatment. It is common for people’s anxiety to increase the closer to treatment they get. Some patients worry about needing to remain in isolation and about current facilities on the ward, like no toilets in bedrooms. Many patients report worries about how they will cope with treatment physically and emotionally. We hope that going through these materials will help you to feel more psychologically and emotionally prepared and give you some skills to help you to cope if any difficult experiences show up.
Many of our patients are concerned about the impact on family members. Some patients share concerns about being a burden, or how their family will cope if their treatment is unsuccessful. It is important to try to share these concerns, where possible with your family or members of your healthcare team. Some patients want to make plans with their family for all eventualities and information about planning for the future can be found here. We recognise that many of our patients’ families and loved ones also experience emotional and psychological struggles and we have resources here for them.
Preparing yourself for your admission to hospital may help you to feel more empowered and can help this stay to feel more manageable. Information on your wellbeing during treatment available on the Keeping Me Well website has some information that might also be helpful to read through.
As we have mentioned, patients are required to remain in isolation themselves in their rooms whilst in hospital and this can feel challenging. 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.
Family and friends being unable to visit whilst you are undergoing treatment can understandably feel really difficult – it can be tough to not have loved ones with you through a challenging time. Suggestions around ways of staying in contact with them can be found on the page on coping with isolation. It might be useful to think with family and friends ahead of time how you want to maintain contact, for example if there will be a main communicator who passes on messages or whether you want to schedule specific times to communicate. This can be difficult to predict depending on how you respond to treatment, but having these conversations could help to avoid situations where you might feel pressured to communicate even though you would like to rest.
The period of isolation also includes being unable to use the ward toilet, therefore commodes are provided in patients’ rooms. Understandably this can feel difficult for some and if you have any concerns it can be helpful to openly express this with your CNS or ward staff – they might be able to offer reassurance and discuss with you ways that privacy is maintained, which could help to reduce any anxiety you might have about this before coming in to hospital.
There will be specific advice that you will need to follow once you are discharged from the ward. This will depend on whether you have had BMT or CAR-T therapy, and also on unique factors related to your individual care. The healthcare team will discuss the specific requirements of this with you during your early appointments. It can be helpful to think and plan with your family or those who will be supporting you upon discharge what might help you during this period. This might include things like how you will cope on a practical level, such as how you will get to appointments, your shopping, how you will manage other commitments such as childcare or work and domestic tasks, and how you will keep some sort of routine to your days. Sometimes people are so focused on getting to treatment or coping with their hospital stay they might neglect to think about their discharge. It can be difficult to predict how you will respond, so thinking with those supporting you what might be helpful through this period, is likely to be useful. For example, if you are usually a very independent person who values your personal space, you might find it difficult to need someone with you 24 hours a day. Having some conversations about this ahead of the time could help you to manage any stresses and challenges.
For patients undergoing CAR-T, if you are required to stay in accommodation near the hospital after discharge, it might be helpful to make lists of things that you will need to pack for your family to bring when you are ready for discharge. You might want to include things that will make your stay more comfortable and familiar, such as entertainment you might need and things to help you maintain some familiar routine to when you are at home. How you and the person supporting you cope with staying away from home will depend on many things, such as how you respond to treatment, your relationship and personalities. Thinking about ways you can cope together during this period might be helpful too.