Chemo Question Corner | 4

In this episode, listeners will gain valuable insights into the chemotherapy journey of Rosemarie and Renée. By observing their proactive approach to asking questions, listeners can learn the importance of being engaged in their own or their loved ones' healthcare journey. The episode focuses how asking questions can lead to a deeper understanding of treatment options, side effects, and overall care. Listeners will also get practical tips for navigating the challenges of cancer treatment, such as managing dental care, side effects, maintaining proper nutrition and safe social interaction during chemotherapy, to name just a few. Overall, this episode offers a compelling narrative that encourages listeners to take an active role in their healthcare and empowers them to advocate for themselves or their loved ones effectively.

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Transcript

Welcome to the start of an incredible journey as we launch into the debut podcast series "tumour, tumour, on the wall" presented by hope love cancer.

Throughout this series, you will accompany us on a profound and intimate exploration, delving into the personal story of an individual's battle with cancer alongside her caregiver. This journey is guided by a simple yet profound notion that one person's cancer story can shine as a guiding light. The story will resonate with your own as we explore the universal questions, concerns and experiences that many of us encounter, from the initial diagnosis and the whirlwind of emotions it brings, to treatment options, managing side effects, finding strength amidst uncertainty and the road to recovery. We'll address all aspects of the cancer journey, including palliative care and the grieving process. Whether you're a patient, a caregiver, a family member or a friend, each episode will deliver relatable content that resonates with you. We understand that the path of cancer can often be lonely, but through this podcast series we aim to bridge the gaps and build a community where you can find hope and love. We are stronger together. Please welcome your host, Charlie.

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Hello everyone, and welcome back to Episode 4. It's a genuine pleasure to have you with us once again. I'm Charlie, and I'll be continuing where Eve left off. Today we return to Rosemarie’s chemotherapy journey. Her story has been one of ups and downs and unexpected turns. As we have seen, her journey is emotional and personal too – not just medical.  I am sure many of you can relate to it in different ways.

As we embark on today's episode, I invite you to make yourself comfortable. Grab your favorite drink — perhaps a soothing cup of tea or a comforting coffee — and settle in. Reflect with me: Have you ever had to adjust to a completely new routine that shifted your entire day-to-day life? Or perhaps you've been a pillar of support for someone else during their time of need. How have these experiences shaped your outlook on life?

Let's take a moment to relax, pause, and truly be present. With your favourite drink in hand, we're ready to move forward into the next chapter of Rosemarie's journey. Let's begin.

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As Rosemarie and Renée prepare for the chemotherapy sessions, they have become well-versed in the routines and challenges that it brings. The day before each session, Rosemarie does her bloodwork in her hometown. This routine includes a Complete Blood Count (CBC). The CBC is essential to check Rosemarie's overall health and ensure her body can handle the chemotherapy. It looks at different components of her blood, such as red and white blood cells, to monitor for any potential complications. Occasionally, along with the CBC, cancer markers such as CA-125 and CA15-3 are also tested. The cancer markers, on the other hand, are specific tests that measure certain proteins in her blood. These proteins can give an indication of how her cancer is responding to the treatment, guiding the oncologist in tailoring her therapy.

Rosemarie and Renée found comfort in their simple routine after bloodwork. They would visit a coffeeshop just around the corner from the hospital. Rosemarie would enjoy a cheese and tomato toasted sandwich, and Renée a cheese and ham toasty with coffee. These moments were a nice break for them. The coffee shop visits, that started because of the bloodwork, became a favourite part of their bloodwork day. It made everything else feel a bit more normal.

After the bloodwork, they waited for the routine afternoon phone call to confirm the results were acceptable, allowing them to move forward with the next phase of treatment. So, here we are today, facing not just an appointment with the oncologist, but also proceeding with another session of chemotherapy.

Rosemarie started the chemo day with breakfast. Another important aspect of her pre-chemotherapy routine is nutrition. Rosemarie has learned the importance of starting her chemotherapy day with a healthy breakfast, often choosing oats, on these days. A good breakfast on the day of chemotherapy isn't just about avoiding hunger; it's important for keeping Rosemarie's body strong and better equipped to handle the treatment.

This time, however, there's a new element to their visit. Renée comes prepared with a list of questions for the oncologist. These questions are more than just inquiries; they represent their growing understanding and involvement in the treatment process. They're seeking answers about what's been happening, what to expect, and how to manage the cancer better.

Wanting to understand more about the treatment is an important part of the journey. It's not just about going through the motions; it's about really getting involved, learning about the process, and doing what they can to feel more in control.

Let’s pause and think for a moment how valuable it is to ask questions and to really know what's happening. How crucial do you think it is to play an active role in your or your family's health care?

Their conversation began with a practical concern about an upcoming dentist appointment. Renée's decision to ask about this led to crucial advice: before any dental work, a Complete Blood Count (CBC) is necessary to check Rosemarie's platelet levels. This is important to assess the risk of bleeding, a consideration that might have been overlooked had Renée not brought it up. Additionally, their pharmacist recommended using a non-alcoholic mouthwash as part of Rosemarie's dental care routine. The reason for using a mouthwash is to help maintain good oral hygiene by reducing bacteria and preventing infections. This is particularly important for someone with a weakened immune system. The choice of a non-alcoholic mouthwash is advised, because alcohol can dry out and irritate the mouth. This can lead to discomfort or harm, especially in individuals undergoing chemotherapy who may already have sensitive oral issues.

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They then moved on to discuss the management of side effects. Renée asked what they do if Rosemarie vomits right after taking her nausea pill. This led to some important advice. The oncologist said that if Rosemarie throws up just after taking her medication for nausea, she can take another pill after 30 minutes. Please remember that this advice might be different for every patient out there. The discussion of constipation led to the recommendation of using a rectal suppository, an effective, but challenging method of treatment. Whilst they received the suppositories and gloves, the lack of detailed instructions left them to navigate this sensitive process on their own.

Hydration and nutrition were also key topics. The oncologist emphasised the importance of drinking plenty of water and maintaining a balanced diet to help Rosemarie gain strength. While there is a general concern about sugar fuelling cancer, the oncologist told them that the focus should be on overall nutrition and strength. Once again, please remember that dietary needs can differ from patient to patient and the stage of your cancer.

The topic of abdominal cramps, particularly relevant due to Rosemarie's cancer in the peritoneum, was discussed. These cramps could be related to her condition, and the oncologist advised close monitoring.

Towards the end of their session, Renée inquired about vitamins, supplements, cannabis, and various internet remedies. The oncologist cautioned that any additional supplements, including vitamins, should be discussed to prevent interactions with chemotherapy drugs. As for cannabis and other remedies found online, she advised a cautious approach, prioritising scientifically backed treatments. Remember to always consulting with your healthcare team before trying anything new.

Additionally, the oncologist highlighted certain fruits, like grapefruit, that should be avoided during chemotherapy. Grapefruit can interact with certain chemotherapy drugs, potentially affecting how the drugs are metabolised and leading to unintended side effects or decreased effectiveness. It's always a good idea to talk to your oncologist or a dietitian about any other foods you might need to avoid. This can change depending on your specific treatment plan.

Each question Renée asked and each answer she received added another layer to their understanding of the treatment process. As they continue this journey, their proactive approach in seeking detailed information helped them to navigate the difficulties of cancer care more effectively.

In a particularly encouraging part of their session, the oncologist shared the latest cancer marker results. These markers, which were first tested back in December by the surgeon, have both shown a decrease. The markers they specifically talked about were CA 125 and CA15-3.

So, what are these markers, and why are they important? CA 125, while commonly associated with ovarian cancer, can also be elevated in breast cancer, especially in advanced stages. CA15-3, on the other hand, is more directly associated with breast cancer. It's often used to monitor the course of treatment in women with metastatic breast cancer. These markers help oncologists understand how the cancer is responding to the treatment.

The latest results, showed a decrease in both CA 125 and CA15-3 levels.  This decrease was a significant indicator that Rosemarie's body was responding well to the chemotherapy. It's moments like these that gives you hope and the strength to continue. These markers continued to go down as the sessions continued. 

But with chemotherapy, there's a side effect Rosemarie still has to face: hair loss. Many people undergoing chemotherapy experience this, often starting 2 to 4 weeks after treatment begins. A wig buying trip was scheduled for the Saturday. The wig shop was in a city about 1.5 hours away from home—a new experience for them. Tobie went along too, driving them there and making it a day trip for additional support and care.

When looking for a wig, there are two main types to consider: synthetic and real hair. Synthetic wigs are less expensive and easier to care for, making them a great option for those looking for convenience and affordability. They're designed to hold their style through wear and weather, requiring less styling effort. For cleaning, synthetic wigs need a gentle wash with special products designed for synthetic fibers

Real hair wigs, on the other hand, offer a natural look and feel. They allow better airflow, which reduces sweating and makes them more comfortable for daily wear. Real hair wigs can be styled and washed with regular shampoo, just like natural hair, allowing for more versatility in appearance. This makes them appealing for those who want to maintain a natural look and have the ability to change styles.

No matter what you choose, taking care of the wig is very important. The right care will extend the life of the wig and keep it looking great.

After considering her options, Rosemarie chose a real hair wig that closely mimicked her natural hairstyle. She chose this for a few key reasons: it matched her own style, and the breathability was a big plus for Tobie and Renee too. Rosemarie never opted to shave her remaining hair off. It did however take her a couple of months to get accustomed to the idea of wearing a wig in public places. 

Despite having less energy than usual, Rosemarie was up for a quick stop at a German coffee shop and butchery on their way back home. They had a light lunch and also picked up some German bread and cold meats to take home. This was a nice treat for everyone, adding a bit of joy to the day.

During this time, Rosemarie faced another challenge that was less about medical procedures and more about the complexities of emotional and social support. She deeply appreciated the visits from friends and family, gestures that showed how much she was loved and cared for. However, these visits often left her feeling exhausted, a side effect of the treatment that many do not fully realise. The dilemma for Rosemarie was how to communicate her need for rest without seeming ungrateful for their support. It was a delicate balance between appreciating their care and looking after her own health, a balance she found difficult to maintain.

This internal struggle led Rosemarie to share some advice with Renée. If Renee would to ever visit cancer patients in the future, she stressed the importance of short visits and understanding when the patient might need to rest.

Renée insisted on keeping people with any signs of contagious diseases, like the flu or a cold, away from Rosemarie. She knew that chemotherapy weakens the immune system and that catching something like the flu isn't just an inconvenience—it can lead to serious, even life-threatening complications. Why? Because chemotherapy reduces the body's ability to fight off infections, making patients more susceptible to severe consequences from common illnesses. For instance, the flu can escalate to pneumonia or bronchitis, pose risks of dehydration, worsen chronic conditions, or even lead to sepsis in those with compromised health. Renée's wanted to minimise Rosemarie's exposure to infectious diseases, and was commitment to protecting her health during a vulnerable time.

Renée didn't just focus on avoiding contact with people showing symptoms of colds or the flu; she also looked for an effective way to reduce the risk of infections through direct action. They started using an antiseptic or antibacterial throat spray, a type of product designed to kill germs and bacteria in the mouth and throat. This was especially important before going to places where germs are more prevalent, like chemotherapy sessions or crowded areas such as grocery stores. Antiseptic throat sprays are widely available in pharmacies and health stores, and they're often recommended for situations where there's a high risk of encountering germs, like hospitals, public spaces or planes. By using such a spray, Renée aimed to provide an extra layer of protection for Rosemarie, helping to keep her safe from infections during her treatment. Please consult with your oncologist or a pharmacist, who can recommend the most suitable option for you. 

This advice from Rosemarie and Renée came from their own experiences, reflecting the challenges cancer patients often face in managing their social interactions while dealing with the physical and emotional toll of their treatment. It highlighted the importance of empathy and consideration in supporting those on a cancer journey. This is a lesson we should all take to heart.

As we wrap up today's episode, we've been right there with Rosemarie through some big moments - seeing her cancer markers go down and choosing a wig that makes her feel like herself. 

But there is more to come. Next time, we're going behind the scenes at the treatment center. We will talk about the some of the patients, caregivers and incredible people who help Rosemarie and many others every day - the nurses, to the oncologists, and everyone in between. We will also discuss how these relationships impact the journey.

So, don't miss our next episode. As Desmond Tutu once said: “Hope is being able to see that there is light despite all of the darkness.” This thought will guide us into the next chapter of our story. Thank you for being here with us. Till next time, take care and keep the hope alive.