Interestingly, my role vastly changes after treatment compared to during treatment as the patient journey changes over that time. Truth be told, most of my work has lay in the care involved after the treatment is completed. This often involves managing the more immediate after effects, education and adjustment to modified diets and, where appropriate, rehabilitation of the swallow.
In our last post about Attitude During Treatment, there was a list of symptoms that can occur during treatment but sometimes things can look a bit different afterwards. For starters, the symptoms during treatment are generally acute reactions and although they may persist for a time after treatment ceases, they are often not long term or chronic effects such as; mucositis/mouth sores, nausea and skin irritation. Long term effects can include;
dysphagia
changes to taste
loss of appetite
dry mouth
thick secretions or saliva
loss of appetite
fatigue
lymphoedema
jaw stiffness or trismus
dysphonia or voice changes.
Of course, this is not an exhaustive list of symptoms however this list is commonly addressed in Speech Pathology. More often than not, education and strategies are used to better understand and manage some of these long term side effects. However they tend to be compensatory, meaning that there is no attempt or capacity to change the symptoms, only manage them better. Our most talked about interventions, modified foods and drinks, are often also compensatory as they are an adjustment we make to ensure swallowing remains safe.
In some cases, however, rehabilitation is deemed appropriate in an attempt to make physiological gains and therefore functional improvement of the swallow. The key to this is challenging the muscles involved in the swallow rather than compensate for them. As per any intervention, there is no one swallow rehabilitation technique or regime that suits everyone. A tailored process is undertaken including comprehensive assessment to investigate which rehabilitation techniques will likely facilitate improvement.
In some cases, when the lymph nodes of the neck are effected by head and neck cancer, they are surgically removed. However, due to the absence of lymph nodes, lymphoedema or swelling of the area that has been dissected often results afterwards. While this is something that is treated by a lymphoedema therapist, the swelling can impact the mouth and throat, therefore secondary symptoms including dysphagia and changes to speech (dysarthria) can arise and subsequently be managed by the Speech Pathologist.
As with any major life and/or medical event, there is a process of grief and adjustment to acclimatise to the new situation, new body and sense of self, and to grieve the old "normal". This was discussed in depth in our previous post about Disenfranchised Grief and with our wonderful guest and social worker, Angela. While life can look rather different and it is important to acknowledge this, there should also be focus on problem solving ways to engage with and enjoy the meaningful things in one's life but in a way that is accessible after treatment.
A major and more recently acknowledged issue that can arise after completing treatment is Fear of Cancer Recurrence. It's a complex issue that should be addressed with a wider multidisciplinary team to ensure the person receives the best care available to them. In simple terms, it is the fear that the cancer will return again, and understanding the impact it can have not only on the body but also the impact it has on your life, relationships, finances and psyche. This fear can ebb and flow over time, spiking around times of appointments, special occasions or when presenting with generic but similar symptoms to the first time the person had cancer. It is a multifaceted issue and more times than not, a valid one. A person should always seek help and lean on the available resources to get them through this fear.
It can be both an empowering and scary time to complete treatment and survive cancer, and it looks different for everybody. The topic of life after treatment is often dismissed because "treatment is finished" but more often, the effects live on and care during this time is just as important as the earlier stages. This is why a lot of my therapy after treatment is laced with counselling. Education around modified diets is always encouraging of experimentation, creativity and curiosity, The Fourth Place being somewhat of an ode to this part of the continuum of care, discussion about dysphagia rehabilitation has undertones of hope, and explaining the management of long term effects is both realistic and motivating. It's as important as ever to support and be supported in this time, be it through your speech therapist, family and friends, or a neat little dysphagia blog you come across on the internet 🙃
For more information about side effects, you can visit the Cancer Council Website.
For more information about Cancer Survivorship, you can visit the Australian Cancer Survivorship Centre Website.
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