Let’s get down to it – Getting Organized
Sarcoma Cancer care involves an alarming amount of paperwork and a long list of appointments.
Get organised, a great idea is to sort out a digital calendar to keep everyone in the loop.
Digital calendars allow more people who want to help you but don’t know how get involved. A good example is to help you get to your appointments by offering a lift, or to make you a meal on returning from an appointment, Google Calendar is great for this.
Its a good idea to keep a folder with dividers for different types of information, appointments, contacts, details about chemotherapy medications, test results, questions to ask, and so on. Its easy to become confused about who said what and when.
When keeping your records its a good idea to highlight the date of each report, the type of report, and any notable findings, this will make them easier to find and discuss at future appointments.
It is nearly impossible to prepare for the whole of cancer treatment. What you are told at the outset may not actually happen.
Plans change based on the results of further testing, the effectiveness of treatments, and side effects that arise. And as they say “the waiting begins”.
learn how to be both patient and flexible stay positive and you will get a better outcome.
Communicating with family & friends
Keeping family members both informed and updated can take time and become frustrating and tiring.
Write an open letter to your friends telling them how you want to be treated,”No Sympathy Please, Treat Me as Normal” so at the start of a conversation when you next see them they don’t overload you with sympathy, and create an awkwardness.
Half your friends and family with listen, half won’t.
Send e-mail or text updates to a list of friends. What’s App is great for this
Create an online social networking group to facilitate support and spread progress. Facebook
Delegate the task of sharing news to a close friend or family member.
Start a blog or a web page on a site, it can help you along the journey and inspire others.
Managing Fears & Feelings
One of the challenges that new Sarcoma cancer patients and their families face is the fear of the unknown.
It can be shocking to discover that doctors, even sarcoma experts, cannot answer all of your questions with certainty. Doctors and Consultants often present sarcoma patients with treatment options, as opposed to set plans, and invite patients to participate in making decisions that are a critical part of their care.
While these options are discussed and treatment plans are developed, patients may feel as if they are standing still, overwhelmed by the fear of an unknown future.
“Sometimes it’s okay to let the unknown be the unknown…or you’ll drive yourself mad.”
The truth is that life goes on even when the future is uncertain, and each person can learn how to deal with daily life while keeping company with ‘the unknown.’
It might help to consider this encouraging news: With modern medical care, remember most people survive sarcoma.
At any point along the way, a patient can ask his or her Doctor if the goal of treatment is to achieve a cure. When the doctor’s goal is a cure, the patient can focus on that goal and do everything possible to live well and recover fully.
During treatment, some people find that it helps to limit their exposure to activities and media that that increase feelings of stress or sadness.
It may come as no surprise that insomnia, anxiety and depression are fairly common among cancer patients and their loved ones.
These difficulties can impact a person’s ability to make medical decisions and to remain physically and emotionally healthy. It is important to discuss these issues with a doctor who can offer suggestions, including medications.
Many patients and carer’s in online support groups like this one to share their feelings of gratitude that medications are available to help them through tough times.
At most medical centers, counsellors and social workers are available to talk with patients and their families.
Working with a counselor can allow a person to sort through thoughts and feelings, find clarity and feel empowered. Sometimes it is not the patient but a carer who can benefit from counselling the most.
Communicating with the Medical Team
It is common for patients to feel nervous about talking with doctors. It is easy to stumble over words when using medical terms, describing physical symptoms and expressing fears. The good news is that patients can become more comfortable talking with doctors and nurses as they learn and gain experience.
It is helpful to remember that, just as the doctor is an expert in medicine, the patient is the expert in his or her own symptoms, feelings and needs. Most patients feel empowered as they learn more about their health and practice speaking up about their concerns. Of course, some moments are especially difficult and emotional, but each medical conversation can be a learning experience that builds confidence and understanding.
Writing down questions before appointments, bringing a friend to appointments and writing down the doctor’s answers can reduce stress and improve communication. Recording appointments is a great way to allow for the review of a doctor’s comments at a later time (and there are recording apps available for most smart phones).
Don’t be afraid to ask a doctor to define unfamiliar terms, provide examples, review concepts and clarify treatment recommendations.
As treatment Progresses
It helps to keep the lines of communication open. Most doctors welcome a call when families are concerned about symptoms, don’t hear about test results or feel that something is not right.
It is important to talk to doctors and nurses about pain. Pain management is a very real need for thousands of sarcoma patients. Pain can interfere with physical and emotional healing and can limit a person’s ability to function and interact with others in a positive way. There are many helpful medical and complimentary approaches to dealing with pain.
Unfortunately, some cancer patients suffer from pain that is not managed adequately. Hospitalized patients who are in pain can ask to see the Pain Nurse in charge. Sometimes it takes talking with several different doctors and nurses in the hospital to see results. Patients who are dealing with chronic pain may feel that their oncologists do not spend enough time addressing their pain. It helps to remember that oncologists’ primary focus is on getting rid of cancer.
Making a Way through Treatment
Most people have an idea of what cancer treatment is like based on what they have seen and read. As a result, the days leading up to treatment can be filled with a strange blend of fearful anxiety and hopeful expectation for a cure. Patients and their families can use some of this pre-treatment energy to discuss and handle a few important issues.
Several sarcoma treatments pose a high risk to both men’s and women’s fertility. Sarcoma patients concerned about fertility should discuss it with a Doctor as soon as possible, even before treatment begins, in order to have access to the widest range of fertility sparing options. Men’s options include sperm banking, and proactive patients usually have time to arrange for this procedure before treatment begins.
Womens options are more complex but can still be discussed and considered. There are also fertility sparing options for children and young adults. While the risk of losing fertility because of cancer treatments is very real, some sarcoma patients do go on to have healthy children without fertility sparing interventions.
Having a dental checkup and cleaning ,taking care of necessary dental work is highly recommended before starting chemotherapy. Healing and fighting infection can be problematic during and after treatment. Oral hygiene is very very important, your lack of ability to fight oral infection can lead to unnecessary misery. You don’t want to add Cold Sores, Thrush and Toothache to an already difficult situation.
Getting Through Treatment
“Don’t let a long list of possible side effects overwhelm you. They don’t all happen to everyone in the same degree.”
The sarcoma treatment experience varies greatly. Some patients will only need surgery, while others will need a combination of treatments that last for about a year. Those who only need surgery may be surprised at how long it takes to recover. Those who have chemotherapy and radiation therapy may be surprised at how much treatment is required. Sarcoma treatment and recovery can be a long road, one with a valuable goal…life without cancer.
Change your lifestyle, eat well and exercise, learn how to lose weight is some of the best advice you could take.
Rounds and More Rounds:
Each patient will need a different amount of time to safely and comfortably recover from each treatment. Amazingly, some people regularly work through treatment, while others need much more time to rest. In general, it gets harder to recover in the later rounds of chemotherapy, and exhaustion tends to increase with later radiation treatments.
Some treatments put the body at risk of infection, so doctors recommend steps to avoid exposure to bacteria and viruses. Still, life can develop a rhythm during treatment that allows for a number of planned activities.
Sepsis is a real danger which comes into view as a possibility after the third round of Chemotherapy, your bodies defences by this time are as low as they go, allowing the possibility of nasty bugs to attack you when your immune system is at rock bottom.
Stay away from people who have colds or other illness. Make your friends and family aware of the seriousness of your lack of immunity. Self-isolation is not as bad an idea as its sounds, in this phase of your treatment.
Without wishing to sound to alarmist – If you experience any kind of temperature spike go to hospital get checked-out, Sepsis can kill you in a matter of hours, and at this point in your treatment it would be rude to cock-up. Being self aware is very important around this time in your treatment. Read Pauls Story in our members stories section.
Some people, especially adults, spend a great deal of time at home while undergoing sarcoma treatment. They go to hospital to receive treatment and then are released to spend a night, a week or more at home before returning for their next treatment session. Some patients even have the option of leaving the hospital wearing a “chemo backpack” or having chemotherapy administered at home with the help of a home healthcare aid.
There are a couple of challenges that patients encounter when receiving outpatient treatment. First, it can be difficult to juggle the many appointments involved in outpatient care. Doctors come to see inpatients, but outpatients often need to visit several doctors and have several procedures done in one day. This leaves a sick patient to find his way from department to department while trying to stay on schedule. The hospital staff can help, especially when a patient who has several appointments is delayed.
Outpatients will also deal with medical questions and side effects when there is no medical team nearby. Some will have a hard time knowing when to call the Doctor or return to the hospital. It is important to follow the doctor’s written guidelines about returning to the medical centre when certain symptoms arise, especially a fever over a given threshold. When in doubt, most patients can only benefit from calling a doctor and discussing their concerns.
Some chemotherapy protocols are best administered in the hospital where patients can be monitored and cared for by a full medical nursing team. Staying in the hospital frees patients from some of the burdens of treatment and can make it easier for doctors to manage any side effects.
In treatment a patients attention span is severely challenged, Ipads,Tablets, and Audio books even a Radio make excellent companions. Earplugs too, as hospitals are noisy at night, all through the night, a good nights sleep in hospital is worth a fortune, so go prepared.
Coping Well and Strengthening Relationships
Coping with cancer can be stressful. Fortunately, each person dealing with a new sarcoma diagnosis has already developed skills for managing stress, anxiety and fear. In fact, most people understand and rely on several of the coping skills that are associated with a positive adjustment to cancer diagnosis.
These skills can include:
- Seeking Information
- Maintaining a fighting spirit
- Maintaining a Positive Mental Attitude
- Seeking Support
- Emotional Expression
Additional coping strategies to consider include:
- Lifestyle improvement
- Re-evaluating priorities
- Engaging in activities that have been put off (travel, trying new things, etc.)
- Advocating for oneself
- Asking others for help and support
- Present-moment focus
- Prayer or meditation
- Using complementary medicine
- Artistic creation/expression
- Positive self-talk
Navigating Changing Relationships
Relationships change during Sarcoma Cancer, these are universal and are a popular discussion topic among sarcoma patients and carer’s. Families often find that their closest relationships are strengthened and stressed at the same time. Patients tend to struggle if they feel forced to depend on family members more than usual.
Carer’s may find it difficult to adjust to a new role that can require a significant amount of time and resources. Couples often notice that their relationships feel less balanced and more complicated. Children and siblings are impacted in a number of ways and can benefit from age-appropriate coping support.
Friendships can change dramatically after a cancer diagnosis. Some friends step up to offer valuable support, while others step back or distance themselves. It seems that some people are confident that they can handle a friend’s illness and that they have something to contribute, while others feel unable to help or to sustain a relationship that is threatened by a frightening disease.
Cancer is also a major ongoing ‘event’ that can overshadow other aspects of a friendship and expose differences in values and priorities. As individuals grow and learn through the cancer experience, their friendships will inevitably change.
Relationships during a medical crisis require work and grace from everyone involved. Even the best friend can say the ‘wrong thing’ during such an emotional time. When patients have the energy, maintaining and strengthening friendships can actually be a life-affirming investment during treatment. Patients can help their loved ones to understand and care by sharing their thoughts and experiences.
They can create a safe space for conversation by welcoming questions and telling people which topics of discussion are okay. They can lead by example, showing others how to use humour and honesty to handle issues when communication is difficult. And they can invite their loved ones to talk about life outside of the cancer experience, to share their daily joys and sorrows.
It can be heart-breaking when friends disappear during cancer treatment, and it helps to focus on the friends who stay. In the end, cancer survivors look back with great appreciation for the incredible friends who were there for them during treatment. Those friendships grow to be deeper and more meaningful than before.
Handling the Expectations of Others
It may be impossible for a family dealing with sarcoma to continue fulfilling commitments and participating in activities that they valued before cancer. Lowering expectations of oneself and redefining priorities during treatment are often necessary, especially when it comes to pleasing other people and meeting their needs.
As shocking as it is, some friends and family members will not understand the drastic life changes that come with a cancer diagnosis. They may voice concern, sadness and even frustration with these changes. Patients and their families might do well to distance themselves from friends who demand too much during treatment.
The Power of Support
At one point or another in the process of treatment and recovery, most sarcoma patients and carer’s feel the burden of unanswered questions and concerns.
- “How do other people deal with this?”
- “How is this going to affect the rest of my life?”
- “Are there people who really understand what this experience is like?”
On and Offline Support Groups: People with sarcoma often feel alone where they live, but the Internet can connect them instantly with others who feel the same way. Patients can join in discussions with survivors who have dealt with the same subtype of sarcoma, the same chemotherapy protocol, and the same surgery. Connecting this way gives patients and carer’s the opportunity to discuss the rare challenges that they face, helping them to feel understood, informed and empowered. A few resources that can be found in sarcoma support groups include:
- Encouragement and insights from people who have been through every stage of the sarcoma journey – and a vision of what life can be like after treatment
- The names of doctors who have treated patients in a similar situation and information about the expertise at various sarcoma centres
- Practical tips about traveling to sarcoma centres – where to stay, what services are available to help travellers, what the weather is like, and help with the process of getting an appointment
- Information about the effects and outcomes of various surgical options from people who have had those surgeries
- Helpful suggestions about dealing with the side effects and daily challenges of treatment
- Answers to questions about specific clinical trials and first-hand experiences of patients who are participating in those trials
- Connections that reduce loneliness, including opportunities to meet other patients and carer’s in person.
Alternatively come and join in on one of our meetings at Oswestry, your are always welcome.
We are grateful for the insights and thoughtful contributions of Elizabeth Goldstein-Rice, Mimi Olsson, Elizabeth Munroz, the ABC Survivors support group and the Team Sarcoma Facebook group and the Libby Shriver Sarcoma Initiative , Oswestry Support Group and RJAH hospital staff.