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7.0 Standing Strong Together: ESSENTIAL TIPS for CARERS FACING a LOVED ONE'S SECONDARY CANCER DIAGNOSIS

Updated: Mar 7

In this blog I want to talk about what to do when cancer is back and having to re live all the turmoil previously experienced. How we coped and handled this and the


In this blog I want to talk about what to do when cancer is back and having to re live all the turmoil previously experienced. How we coped and handled this and the help and resources that we used to cope with the new treatment and the impact it can have on us as carers.


We believed we had finally made it, we had a clear 3 month scan followed by another 3 months later. However, following this, Catherine had a few niggles and after consulting with the hospital and undergoing further scans, we discovered it had returned and we were once again thrown down face-first into the unforgiving dirt. All the trials and tribulations we endured suddenly felt futile. Cancer, that cruel intruder, had resurfaced, forcing us back to where we began. Yet, this time, the emotions we encountered were not entirely foreign. Having already encountered this dreadful battle before, we had learned how to navigate through some of the overwhelming circumstances and cope with the effects.


YOUR FEELINGS AND ROLE

When a patient gets new scan results prompting a need for further treatment, there are a variety of possible things that we as carers we might expect. Here are a some possibilities:


Emotional Reactions: During this critical process, patients often undergo a profound range of emotions, encompassing worry, anxiety, fear, depression, or even anger, are implications of the scan results. We definitely had to navigate some of these emotions, sometimes it was really tough. You have to carry the burden of dealing with your loved ones fears and the reaction of these and also not forgeting your own fears and worries, and keeping them in check to avoid any negative or damaging reactions you might have. Emotions are important and learning how to handle yours and others emotions is an important skill, but its also a real struggle. Your not alone, and don't be afraid to ask for help when needed. It is essential for us, as caregivers, to understand and empathise with these your loved ones, providing unwavering support, empathy, and utmost patience. It was at this time for me and Catherine that we comprehended the true essence of life and through it, we gained clarity on where to prioritise our efforts and energies. We tried to focus on positives, your energy is better placed on these.


After the initial shock of of discovering the cancer was still there and then coming to our senses after the emotional reactions had subsided. It was important for me as a carer to try and better understand what this new diagnosis, what and why this had happened. What it means, what the new medical terminology language and more importantly what to expect. We had the usual kind caring words from the specialist nurse and oncologist. But in the shell shock of the moment it’s always difficult to take in anything at all. There’s plenty of information available on the internet, although I would always advise caution as misinformation or misinterpretation of information can cause unnecessary panic and worry. A better option is to wait for your emotions to settle and speak with your medical professionals and be guided by them and the breast cancer nurses and charities. There are also 'help lines' and information leaflets and dedicated websites.


Emotional Support: My advice on providing emotional support to your loved one would be to try active listening, reassurance, and empathy. I have to admit this didn’t come entirely naturally to me and I had to avoid my default of trying to find a solution to fix the problem rather than concentrating on being a listening rock.


Active listening involves more than just listening, it’s about paying full attention to her, showing interest in what they are saying and processing what they say. So give your undivided attention and maintain positive body language and keep eye contact. Reflect on what she is saying by paraphrasing what has been said, to show your following along . Clarify what is said by asking questions, this is also important if your not understanding what they are saying. Be empathetic and show them you are understanding their pain. Try not to interrupt to show respect and at the right time give some feedback and let them know they have been heard.


Remember, you don’t need to take this on yourself and there are resources and professional counseling services you can use. So don’t be afraid to take up anything available for you both to get things off loaded, it can be really helpful.

Treatment Decisions: In the context of medical treatment, it is important for you both and medical team to engage in meaningful discussions regarding any new options. It is during these discussions that you as the carer may play a crucial role in helping them comprehend the information presented. These treatment decisions can often be intricate, requiring careful consideration of various factors such as the potential benefits, risks, costs, and most importantly, both of your personal values and goals.


You or another family member or friend who can be an advocate in these situations. We discovered that Catherine's friend, who had worked as a legal executive, proved to be an invaluable help during our medical meetings. Not only was she adept at maintaining comprehensive notes of the information shared, but she also ensured that we had access to all the available options. This allowed us the necessary time to reflect and consider the best course of action for Catherine's well-being and future treatment options.


By adopting this approach, we were able to make well-informed decisions, considering all aspects of the treatment process, whilst taking into account Catherine's individual circumstances.


Symptom Monitoring: Another way of helping might be learning about the symptoms that may require prompt attention and how to keep track or notes of them if they need discussion during doctor's visits. you may also decide to keep a notebook handy with information and instructions of what to do in the case of an emergency.


Escalating Care Demands: Sometimes care requirements may intensify or alter in accordance with the treatment plan. It becomes imperative for us as caregivers to collaborate with healthcare professionals in comprehending these evolving needs and devising appropriate strategies to fulfill them. In our case, this situation resembled our previous encounters, albeit benefiting from the knowledge gained through past experiences. As a result, we and our family members were better equipped to provide effective help, care and assistance.

The person you are caring for may also be provided with medication and advice relating to pain management. This information may include techniques, including medications, non-drug therapies, and comfort measures. Familiarising yourself with these will help you understand what is needed and help you be prepared to help them if the need arises.


Practical Issues: Assisting with various arrangements and concerns, such as appointments, procedures, transportation, accommodations, and insurance matters, can be crucial. In order to effectively support them, we should stay proactive in handling insurance procedures and maintain open communication with her employer. As the primary caregiver, it would be valuable for you to have a basic understanding of her insurance coverage, work contacts, and any related information that may be helpful if she is unable to communicate for any reason. Additionally, it is worth considering options like organising a power of attorney and establishing wills. (This part is discussed further below) These proactive steps can greatly reduce stress and prevent unnecessary issues in the future, even though we hope you won't need them. Remember, it is important to plan ahead..

Enhancing Communication with the Healthcare Team: As the caregiver may require your close involvement in communicating with the healthcare team to fully comprehend the implications of the scan results and additional treatment needs. You might find yourself in situations that necessitate asking uncomfortable questions. Be reassured, as the healthcare team is accustomed to and sincerely ready to offer their support and assistance.


Prioritising Self-Care: The role of a caregiver can be emotionally demanding, it is crucial for you to prioritise your own well-being. It is important to understand that taking care of yourself is not selfish; rather, it is a selfless act as it enables you to provide the best possible care to your loved one.


Nutrition and lifestyle are important considerations. Looking for help and guidance on helping maintain a healthy diet and lifestyle, including meal planning and gentle exercise options that are suitable for each person. Find recipes for healthy food and teaching yourself how to cook and prepare nutritionally good meals as this will really help them and you too. Maintaining a healthy diet helps you both cope mentally and physically with any treatment. Take up exercise appropriate to the your ability, rest and play are also an important part of your body and mind health and keeping your body in the best possible condition. This will also help as an important part of the overall main mechanism for dealing with ongoing cancer treatment and the caring function you provide.


Remember to take care of your own physical and mental health by seeking support from various sources such as support groups, therapists, or charities. These professionals can provide valuable guidance and assistance. Additionally, don't hesitate to take some time out for yourself whenever possible.


By investing in your self-care, you are enhancing your ability to offer optimum care and support to the person you are caring for. This proactive approach helps maintain your own resilience and ensures that you are better equipped to face the challenges of caregiving with compassion and strength.


Financial and Legal Planning: It was after Catherine’s secondary diagnosis we began to look into financial and legal issues. Understanding the financial implications, exploring wills and protecting our assets was a difficult but important thing we needed to consider to ensure her wishes where known and would be dealt with appropriately in the future. This is a complex area of law depending on which country you live, my advise is to seek professional advice whenever possible. We sort advice from a legal firm who specialised in Wills and estate management. It was also important that we produced a memorandum of wishes, this is for the non legal but important things like, funeral music, passing on to others items of sentimental value and things like that. In terms of assets it was important we protected everything we had worked hard for for the children and that if I was somehow hoodwinked into a love trap, that no other 'Disney' esc step mother could strip us of our assets.


Finally, it is important for me to acknowledge that each patient's situation is truly unique. As a compassionate carer, you must be prepared to exhibit flexibility and adaptability in response to any unexpected changes that may arise.

In navigating this challenging journey, we must often reminded ourselves to take small steps forward, focusing solely on what lies ahead rather than dwelling on the past. It is also crucial to remember that 'You can do this.' It is absolutely normal to feel afraid, stressed, or anxious in such situations, as these emotions are a natural human reaction. Moreover, these very emotions can serve as a powerful driving force for you as a carer.


One final thought is that if you are a husband, partner or otherwise together in a loving relationship with them. Don't forget to be that loving person above all else and the caring role should be an accompaniment to that relationship and not take over. More than anything else they need you love and devotion.

This brings us to the end of my blog on secondary diagnosis. If you'd like to delve deeper into how my faith has carried me through this journey, I encourage you to continue reading the following blog. However, please do not worry if this topic does not resonate with you. It certainly won't hurt to give it a try. You never know what insights or support you may discover along the way.


If you have been effected by any of the items discussed in this blog, please seek professional guidance and help. Check out the links section of this web site with a list of organisations and web sites that may be able to offer support.

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