Immediately after leaving hospital, people can feel relieved to leave but this can also be a time when they feel frightened and vulnerable as they are no longer surrounded by healthcare professionals. More information can be found in the ‘after treatment’ section on the Keeping Me Well website. For patients who have undergone BMT and CAR-T treatments, there are typically a lot of follow up appointments and monitoring. For some this can feel reassuring, whereas for others this can be experienced as burdensome or overwhelming. Patients will normally need assistance with physical care, medication and transportation to clinic.
At hospital discharge there is still considerable uncertainty about the success of the treatment. Typically, patients continue to need to isolate at home due to their vulnerability to picking up different infections, which can feel hard. How people and their families cope in this period is often influenced by their response to treatment and the impact of any side effects. Those who suffer more complications are understandably more likely to be impacted psychologically and emotionally. However, this doesn’t mean to say that those who have few complications won’t experience emotional challenges. This is when people understandably worry about whether the treatment has been successful and have to wait for test and scan results to confirm this. It can feel hard managing the uncertainty that arises from this for you and your family.
After a period of time, your main day-to-day care is transferred back to the local haematology service. The timescale for this transition will vary from person to person depending on which treatment you have and your response to it. When this transition does happen, it can feel like a difficult time for some people, as the level of input you receive might reduce. However, the BMT and CAR-T teams will continue to offer reviews at specified periods of time, which the healthcare team will discuss with you, and they will continue to offer advice and input to locality teams as necessary.
In the period after discharge, patients can feel stuck in a place of uncertainty about their recovery and a level of doubt that can last for a long time. Unpredictable progress, complications, infections and an uncertain future can mean high levels of anxiety. Patients often have questions about their continued recovery and getting back to their normal life, and they may experience grief over the loss of their life as it was, often feeling uncertain about their ability to resume social and work roles, raising financial concerns for some. Some patients can feel distressed about their level of functioning and unhappy with their degree of recovery, particularly if they experience ongoing side effects. Many patients report experiencing fatigue following treatment and the level of fatigue and how much it impacts on them varies from person to person.
Another side effect that some patients report experiencing following treatment are cognitive difficulties such as problems with memory, concentration, and attention. It can be difficult to unpick which factors contribute to these difficulties, as there can be a number of things implicated. Not everyone will experience these symptoms and the severity and duration in which people experience them also vary. If you are experiencing these symptoms then you should let your healthcare professionals know during your appointments. We have put together some suggestions of aids that people can find helpful in managing some of these difficulties.
Often people worry about how the treatment and their recovery could affect aspects of day-to-day life, like returning to work or finances. Your healthcare team should be able to give you specific advice or give you details of a hospital welfare officer. Citizens Advice also offers support on their website.
Some patients may attempt to find new meaning in response to their situation. They may feel they have another chance at life. With this chance comes a responsibility for not wasting this opportunity, by exercising caution about how they live. Patients may experience a new sense of agency, a regaining of control over aspects of their lives including their health. For some patients, the experience is a significant transition point in their lives.
Sadly, there will be situations where the treatment will not be successful for some of our patients. The healthcare team will discuss the options with you and your family to ensure you get the support you need. Further information about palliative care planning can be found on the Dying Matters website.