The Cancer Journey. Moving Forward After A Diagnosis
Sharing some helpful resources and insights.
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
Last week, as part of World Cancer Day, I launched iCARE: The Cancer Anthology, together with fourteen writers who are members of this Carer Mentor community.
Dear Friend, if you’re the loved one/friend/family member of someone with cancer, I see you. I was/am that person for my parents and friend(s). I care about Cancer.
The passing of a very close friend at the turn of the New Year spurred me to focus new Carer Mentor content on networking community support for cancer sufferers/survivors (which includes everyone on the journey, not just the loved one who’s diagnosed with cancer).
Have a look around iCARE Stack. You’ll find resources, recommendations and tools.
For example, the Index: Giving/Receiving Care contains a rolling list of Caregiving Hacks and Tips and videos of First Aid techniques to refresh your memory.
There’s also an index of articles For The Caregiver containing Carer Mentor articles, leveraging experts’ insights and research to support us through rollercoaster moments.
I hope these tools and resources that have helped me navigate challenging emotions and rollercoaster events can help you, too.
I’ve several close friends and family who have suffered/are suffering from various forms of cancer: Bladder, Endometrial, Lung, Prostate, Bowel, Colon, Breast and Skin.
I’ve become very familiar with the lingo like MRI1, CT2, Contrast CT3, PET4, MDT5, Colonoscopy6, Chemotherapy7, Radiotherapy8, TURBT9, BCG10 , Targeted Therapy, .
I’ve camped out in hospitals overnight, watched over each of my parents —hypervigilant to every whimper, or advocating for their needs in an overworked, under-resourced hospital/community setting. I’ve also orchestrated care support for family members at a distance.
EVERY person’s experience is unique, whether you’re the person with cancer or the family/friend/caregiver, there are communities online and near you that can offer support. You’re not alone.
While there is a wealth of cancer information everywhere, it can feel overwhelming, like a tsunami of information.
I’m not here to offer comprehensive information. I’m signposting some resources you can dip into now and again as reference points, with insights.
You don’t have to be alone navigating all this. Figuring out what to ask, when, and why can feel burdensome. There are people you can talk to and organisations that have the knowledge that can be tailored to your situation. Call/ask them.
Dear caregivers, it’s not all on you. Identify the people you trust and who will DO things, people who actively listen and act without drama. (Not the swoop-in hero-types, care-splainers, or mansplainers).
Tips that work for me:
Breathe! Don’t try to understand everything all at once, knowing a question is already a good start if you’re discombobulated.
Keep a notebook journal with questions or a running list alongside your appointment calendar.
Have someone with you at your consultations, and/or record the consultation on your phone.
Debrief over tea/coffee/lunch to align on what you heard. Make a note of any clarifying questions and follow-up actions.
Aligning on ‘what this means for us now’ keeps us in synch, with one voice—with every small step. This isn’t a checkbox action. It’s small thoughts, discussed and confirmed over a couple of days sometimes.
Always keep 1 hardcopy calendar with all the appointments as a backup. Plot out when you expect appointments to be as far as possible, e.g. blood tests. Bank holidays are a pain in the UK.
If you’re in the UK, identify your pharmacy and set up home deliveries.
CM Mantra: Never assume something has been done, communicated, or actioned.
Several organisations were recommended personally by writers in the iCARE: The Cancer Anthology,
Please remember to ‘❤️’ LIKE the article to guide others to this community support.
Thank you for being here. Help me network ‘empathy and inspiration’ by subscribing to Carer Mentor.
Index of Cancer Resources
The big picture view of the Cancer Journey from Macmillan Cancer Support
Questions and prompt suggestions from an oncologist
UK Maggie’s: Everyone’s home for cancer care
Caring for the Caregiver, part of a toolbox by The National Coalition for Cancer Survivorship (NCCS). Audio insights.
USA Siteman Cancer Center. This is Cancer Podcast - Episode 20: It’s Cancer: Now What? Finding Direction After the Diagnosis (August 21, 2024).
1. The cancer journey. Macmillan Cancer Support: Times of need and cancer
Macmillan, a UK-based organisation, has identified stages along people’s cancer journey when experiences are commonly shared, with five key moments (diagnosis, treatment, recovery, living with treatable but not curable cancer and end of life) where there is a particularly high level of unmet need.
The graph shows the stages in peoples' cancer journey that are common moments as identified by Macmillan. The stages are: concerned about health, going for tests, receiving a cancer diagnosis, starting and going through treatment, finishing and recovering from treatment. After going for tests there is a line connecting to cancer coming back. After finishing and recovering from treatment the journey then splits and includes: living with treatable but not curable cancer and death. Another branch is living well after cancer and living with the consequences of cancer. The graph has been made to show that these stages can repeat and are not linear.
2. Questions and prompt suggestions from an oncologist.
[I recently found Erik’s publication. His most recent article was published in 2022. I haven’t received feedback after reaching out to him. However, based on my experience, I recommend reading these articles to support your discussions]
Erik Rupard writes Cancer 101 says he's
'Just a humble country oncologist. a triple-board-certified specialist in internal medicine, hematology, and medical oncology, and an assistant professor at Drexel University College of Medicine. I initially wrote these articles for my patients as a practical users guide to the often-confusing cancer experience, and to provide pragmatic and honest advice for navigating Cancerland.'
Ten Questions Every Cancer Patient Should Ask At Their First Appointment (and why you need these answers) (Published March 28, 2022)
Mythbusters #1: There Is A Cure For Cancer. No there isn't, but I still have some very good news.
“Below the levels detected by this scan/test” or “Unchanged, controlled” are THE phrases that relieve us after waiting in uncertainty—a string of reprieves, until the next monitoring test.
3. Maggie’s: Everyone’s home for cancer care
There are 27 centres around the UK and 4 internationally (Kalida Barcelona, Groningen, Hong Kong and Tokyo).
Maggie Keswick Jencks used her experience of cancer to create a new type of cancer care – centres offering professional support, bringing people together in a calm, friendly, uplifting space.
Who was Maggie?
Maggie was a writer, gardener and designer. When she was 47, Maggie was diagnosed with breast cancer and five years later, in May 1993, on a visit to the Western General Hospital in Edinburgh, she was told that it had returned.
This is a story of maggie’s
You can explore the support from Maggie’s here
4. The National Coalition for Cancer Survivorship (NCCS)
The Cancer Survival Toolbox®
The Cancer Survival Toolbox is a free, award-winning audio program developed by leading cancer organizations to help people develop important skills to meet the challenges of their illness.
The audio programs address scenarios for many topics and issues cancer patients/survivors face during their cancer journey. The conversations touch on issues from how to communicate with your doctor, family and loved ones, to understanding complicated financial issues. Each scenario is inspired by true stories of real cancer patients/survivors. Caring for the Caregiver
5. Siteman Cancer Center. This is Cancer Podcast- Episode 20: It’s Cancer: Now What? Finding Direction After the Diagnosis (August 21, 2024).
Siteman Cancer Center11 There are several videos in addition to this one. Take a look on YouTube.
This video refers to some US-specific processes of cancer care. The challenges Chuck and his family faced will resonate with several of us. Here are some of the insights he shared.
Chuck learned how to tailor a treatment plan firsthand as he acted as a caregiver to his son and then when he faced a cancer diagnosis himself. In the episode Chuck shares his experience and is joined by Tate Rondot, Siteman’s Manager of Support Services.
Both are involved in Siteman’s Patient and Family Advisory Council (PFAC), a group dedicated to helping every patient create the plan they need during their cancer care. They offer considerations and resources that personalize patients’ treatment from diagnosis to hospice and every stage in between.
“This is Cancer” is brought to you by Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis and is produced at Spot Content Studio in St. Louis, MO.
Chuck’s son had Glioblastoma (GBM), and then he had Prostate cancer
Key soundbite-insights
You can’t do it by yourself. Identify your allies - nurses, technicians in addition to the doctors
Understand how the insurances work (Chuck works in insurance so knew how to navigate it). Find someone to help you with that.
Most difficult part of navigating the journey: it’s ok to feel whatever your feeling. Each person is different. Be kind to yourself. You don’t need everything all at once. It’s ok NOT to know everything, every resource from day 1, right now.
At 19.55 minutes they discuss ‘Tumour board’, this sounds like a UK multidisciplinary team.
At 22.03 minutes “how do you manage the anxiety and trust the treatment plan that’s recommended. Ask questions, be proactive about understanding the plan. If you don’t know what questions to ask reach out / seek support”
At 23.56 minutes How do you manage when things change in the middle of the journey?” Everyone is different. They may start with the standard protocols but then each person’s reaction is different. ‘Take a deep breath. So you can respond. ’
At 26.30 minutes The transition to hospice care that Chuck experienced for his son was seamless.
“The Palliative care nurse took the leadership of what was needed in their home.” Remember: this is a case in the US, not UK.
At 31.55 “You as a patients, you have the right to answer any question you like: who are you? What do you do? How long have you been doing this? (to the doctors)."
Ask the nurses, ‘how can you help me? How do I get in contact with you? Can I email you information? can you email me stuff along the way if I have issues? how do I go about doing it? Ask them open-ended questions like ‘what else do I need to know?
‘What else do I need to know? Also to find out who is also part of the Care team. Because it's not just the physician and the nurses it's the social workers it's the psychologists it's the dieticians. It's everybody that works in that facility, is that person's care team and so they have hundreds of people that are on their care team”
In the UK the type and availability of services can be, what many of us call ‘a postcode lottery.’ Always ask.
At 37.32 “We have a very close friend whose adult son was going through leukemia and people would come to him and say, ‘hey how's he doing’. His advice to me was you don't need to share anything with anybody because a lot of this turns into gossip and gossip is not good because it goes out and gets changed 16 times.
So it's keeping yourself surrounded with your care team of people that will help you through the process. In our case it didn't need to be large but it had to be impactful with the people that were in place people that could add something instead of extracting something to share with other people about the stuff that was happening.”
Please Remember to ‘❤️’ LIKE the article to guide others to this community support.
Thank you for being here. Help me network ‘empathy and inspiration’ by subscribing to Carer Mentor.
Magnetic resonance imaging (MRI) is a non-invasive medical imaging technique that uses radio waves and strong magnetic fields to create detailed pictures of the inside of the body
A CT scan, or computed tomography scan, is a medical imaging technique that uses X-rays to create detailed cross-sectional images of the inside of the body. CT scans are also known as CAT scans
A contrast CT scan is a computed tomography (CT) scan that uses a special dye to make certain parts of the body easier to see. The dye, called a contrast medium, is taken orally or injected into a vein
A PET scan, or positron emission tomography scan, is a painless imaging test that uses a small amount of radioactive material to create 3D pictures of the inside of your body. It's used to help diagnose and treat many conditions, including cancer, heart disease, and other abnormalities
An MDT is a multi-disciplinary team
A team of health professionals will work with you to plan the treatment that is best for you. Macmillann Cancer Support
A colonoscopy is a way of examining the lining of the bowel from the inside. A doctor or nurse passes a thin flexible tube (colonoscope) into your back passage. The tube has a tiny light and camera on the end to show any abnormal areas.
A colonoscopy can also see whether there are any small growths (polyps) in the lining of the bowel. It is one of the main tests used to diagnose bowel cancer. The procedure is usually done in the hospital outpatient department and takes about 30 minutes.
Chemotherapy is one type of many treatments.
Chemotherapy drugs are used to treat many different types of cancer. They are most commonly given into a vein or as tablets or capsules. Macmillan Cancer Support
Radiotherapy uses high-energy rays (radiation) to treat cancer. It destroys cancer cells in the area where the radiotherapy is given.
Some normal cells in the area being treated can also be damaged by radiotherapy. This can cause side effects. These normal cells are usually able to repair themselves, but cancer cells cannot. As the normal cells recover, the side effects usually get better. Macmillan Cancer Support
A transurethral resection of a bladder tumor (TURBT) is a surgical procedure that removes tumors from the bladder. It's the most common treatment for non-muscle invasive bladder cancer (NMIBC).
BCG (Bacillus Calmette-Guerin) is a vaccine and immunotherapy treatment that is often given after a transurethral resection of bladder tumor (TURBT) procedure. BCG is a weakened strain of the tuberculosis bacteria that is used to treat early-stage bladder cancer.
About Siteman: The Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine is an international leader in cancer treatment, research, prevention, education and community outreach. It is the only cancer center in Missouri and southern Illinois to hold the prestigious Comprehensive Cancer Center designation and “Exceptional” rating from the National Cancer Institute and membership in the National Comprehensive Cancer Network.
Victoria! I found several resources that I am going to use. Grateful!
What an amazing set of resources and insights you’ve curated here Victoria!
I’m in awe of your constancy. Sending love 💕