Teenage Cancer Trust’s Post

So, you’ve got cancer. Once you’ve processed what’s happening, how do you tell people? Who do you tell first? What do you tell them? Do you treat it as a secret or tell the whole world? The simple answer to all of these questions is that there are no simple answers. I was a Macmillan online Community Champion for a long time and that’s my key learning – we are all different. There’s no join-the-dots plan for communicating important personal news like this. For me, when I had thyroid cancer way back in 2010, I told everybody (although I confess I was too upset to tell my mum – I passed that to my friend to do for me). I told people that I was going to be fine, and I also told my colleagues that it wasn’t a secret and they could tell anybody and nobody should worry that they couldn’t ask me questions or come and have a chat. But that’s just me. I’m crap at keeping secrets. I know somebody else who also had thyroid cancer who told nobody other than her husband and her boss. She didn’t tell her daughter or her other colleagues, and she only told her mum much later when she needed somebody to look after her daughter whilst she had radioactive iodine. She’s not the only one. Another woman I met - a high-flyer in the City - had surgery during ‘garden leave’ from one job and told neither the company she left nor the company she joined very shortly after. That was their choice. And that’s fine too. I’ve known people go on quite extended sick leave for cancer and tell just a few people, leaving those of us who knew in the situation of knowing but not being able to say anything. That was hard, but undoubtedly harder for her. People kept asking me if she’d had a breakdown. All I could say was “Seriously?” and hold my tongue. My point – for what it may or may not be worth – is a very simple one. WE ARE ALL DIFFERENT. And WE ARE ALL RIGHT. If you want or need to tell people, then tell them. If you don’t want to, and you’re not in the situation of the world’s media all speculating over your health issues and demanding information, then don’t tell anybody if you don’t want to. Every one of the people I mentioned above is well. We all did different things. We all believe what we did was right for us. And – this is the important bit – none of us owed anybody else any more information than we gave them. If you aren’t the person with cancer – or you can insert any other nasty illness in here – it’s none of your business and you don’t get to judge how somebody else chooses to handle their situation.

#CancerAwareness The burden of cancer is real and here's hoping we locate the cancer cells before it takes over. Last year, around this time, my mother was diagnosed with tongue cancer. While it was a punch in the gut to see her in that position, the justification that she never consumed tobacco made it harder to digest her diagnosis. That's probably the worst part about a cancer diagnosis. It can hit us regardless of our lifestyle choices. Fortunately, as it turned out, the squamous cell carcinoma was detected at stage 1 and she is cancer free! 👁️🗨️ But that doesn't mean she didn't have to fight the fight. Her journey was nothing short of exhausting because even when someones comes out of a surgery which could be categorised as a success, the shift in lifestyle and the pace at which one can heal depends on their immunity, age etc. Here's what went down when my mum got tested and why perhaps you should get any abnormal lumps/ulcers looked at as often as possible: → Mum thought it was an ulcer so she let it slide for close to a year. And though she was eventually diagnosed, the doctors couldn't detect the stage until they removed the cancer cells and examined them. Which meant, we didn't know if she was in the clear after the surgery or would need further treatment such as chemotherapy or radiation therapy (which apparently is suggested from stage 2 onwards). The chemicals are so toxic that a lot of people succumb to it. → Having a surgery on the tongue meant she could've had speech impairment. Fortunately, it was a relatively smaller part so the difference in her speech is 99/100 - what are the odds right? Doesn't make it easier for her to comprehend that it's a win because now, she hears herself differently. → While she's been recovering well, as a woman in her 60s — one can recognise how cancer has impacted her immunity, strength and mental health. → The doctors also ask those in recovery to do the screening every few months as in some cases, cancer can redevelop (especially stage 2 onwards). Coping while looking at the scars, worried if it will come right back while pacifying your loved ones as they can't see you in pain or be rational beings certainly adds to the stress. → We often forget to factor in other ailments that won't be on hold simply because of a cancer diagnosis. So basically, we can never be in complete control. What's that one aspect we can control?  Get tested early/as frequently as suggested by medical professionals. If you or someone you know is seeing abnormal changes in health, don't disregard it for any reason. And to people maintaining a healthy lifestyle, good job, keep at it. But please don't underestimate cancer cells either. 😅 #standuptocancer #recoveryispossible

Are we too fearful of cancer? ...is the provocative subject line of Andre Picard's latest op-ed column in The Globe and Mail. Given recent mainstream news stories, one would be forgiven for the focus. Mr. Picard cites seemingly 'heretical' research from David Ropeik, the Harvard-affiliated author of "Curing Cancerphobia: How Risk, Fear and Worry Mislead Us". A major contention is that the "fear of cancer not only drives people to get testing and treatment they don’t need, but it also scares some away who would benefit [from early diagnosis]." (You can read the article below for free and form your own opinion.) Personally, I'm a realist when it comes to cancer and other serious illnesses. I do what I can to increase my personal health and wellness, but I won't dwell on or feel sorry for myself if I become one of the 'unlucky' ones with an eventual diagnosis. Perhaps it's my line of work that's imbued a clinical approach to these serious subjects. For example, in late 2023 we delivered a $250,000 illness recovery cheque to a 30-year old diagnosed with colon cancer. It wasn't our first claim for a young person, either. Early last year, we paid out a $2,500,000 claim for a 35-year old diagnosed with breast cancer. I can't control medical outcomes for myself or my clients, but I can make sure that everyone has an opportunity to protect themselves and their families, financially, and to buy themselves choice in the type of care they wish for should they experience a life-threatening illness. F*ck cancer. And make sure you've got a war chest of options (and money) to go to battle against it.

Following the result of the General Election last week there is a new government in Westminster. It is important to take a step back and consider what this might mean for teenagers and young adults with cancer. Every day, seven young people aged 13-24 hear the words ‘you have cancer.’ By 2030 that number will be closer to 10.  As the new government sets out their plans and new parliamentarians settle into their roles, they have the chance to drive change for a generation of young people with cancer.  What are we calling for the new UK Government to do ❓ -      Publish a new, long-term cancer strategy in England to improve outcomes for young people with cancer. -      Ensure that every teenager and young adult with cancer has access to expert psychological support from the point they are diagnosed and for a minimum of two years after their treatment.   -      Ensure that teenagers and young adults with cancer have access to clinical trials. -      Take action to ensure that teenagers and young adults with cancer are diagnosed faster.   -      Ensure that good quality, timely data for teenagers and young adults with cancer is readily available, providing insights into the unique issues that young people face.   -      Future planning for the NHS workforce is essential to provide necessary detail about how capacity within cancer care can be increased. Additionally, it is vital that the government guarantees there is a specialist workforce available to treat teenagers and young adults with cancer. Find out more 👇 https://lnkd.in/efa-NYS6

“Talking to your kids about cancer” Telling your children that you have cancer is undoubtedly one of the most difficult conversations you will ever have. It’s natural to feel overwhelmed and unsure of how to approach the topic with your children. However, it’s important to be honest and open with your children about your diagnosis, as keeping them in the dark can lead to confusion, fear, and anxiety. Here are some tips on how to tell your children that you have cancer: 1. Choose the right time and place: Find a quiet and comfortable setting where you can talk to your children without interruptions. Make sure you have enough time to have a thorough conversation and answer any questions they may have. 2. Use age-appropriate language: Tailor your explanation to the age and maturity level of your children. Younger children may not fully understand the concept of cancer, so keep your explanation simple and easy to comprehend. 3. Be honest and direct: It’s important to be straightforward with your children about your diagnosis. Use clear and simple language to explain that you have cancer and what it means for your treatment and prognosis. 4. Reassure them: Let your children know that you are receiving the best possible care and that you will do everything you can to fight the cancer. Reassure them that they are not alone and that you will always be there for them. 5. Encourage questions: Encourage your children to ask questions and express their feelings. Be patient and understanding as they process the news and offer them reassurance and support. 6. Provide resources: Offer your children age-appropriate resources, such as books or online resources, to help them better understand cancer and cope with their emotions. 7. Seek support: Consider enlisting the help of a therapist or counselor to support your children through this difficult time. They can provide guidance and help your children process their feelings in a healthy way. Remember, your children may have a range of emotions in response to your cancer diagnosis, including fear, anger, and sadness. Be patient and understanding as they navigate their feelings and offer them love and support every step of the way. By being open and honest with your children about your diagnosis, you can help them cope with the news and navigate this challenging time together. -Katie

Random ramblings of a cancer patient - part 8 (I think) I have questioned whether this is the right place to post this stuff but as I reflect on how experiences transfer into the world of work, and as I am getting far more reaction than to any purely work related posts I'll carry on. Being open about my journey has generated some interest but nothing like that on SM over the last day following the King's diagnosis. Much of this is speculation about what type of cancer he has. I'm not getting involved with that, everyone's situation is unique to them and how they deal with it a personal decision. I thought about whether I would be open about my cancer and if so to what level and decided to just go for it. I took a deep breath before saying out loud that I have penile cancer. Generally cancer may be losing some taboo but nobody really talks about penile cancer, perhaps as it is so rare, Part of my decision was about raising awareness, if just one person gets checked out sooner rather than later and doesn't end up as far down the line as I find myself then it is worth a bit of embarrassment. I'm also a crap liar. Once people knew I had cancer (which they would) and asked where/what type I knew I would get fed up of saying that I didn't want to discuss it. Secondly, cancer sucks, it changes so much, practically and mentally. First thing in the morning I should be at the gym, not balancing over a jug to empty my drain and measure a days worth of red liquid and then battling with those bloody compression socks. And no matter how hard you try, your mind wanders into worst case scenario territory every now and then. The King's diagnosis just reinforces that cancer (and other crap stuff) is indiscriminate and can affect anyone at any time. It is the same in work, curve balls come, things go wrong, huge disappointments land. Sometimes these are our own fault (another story) but often not. I'm past the point now of caring what anyone thinks but that hasn't always been so, I have definitely kept quiet about issues at work, fearing what people would think, fearing criticism and blame, carrying the burden myself. We really need it to always be OK to speak up about challenging and difficult situations, let others in, so at least, people understand, and where possible support. With the cancer I need to do some things differently, some things later than planned, some things not at all and some new things. It's just the same with the unexpected situations in our work, they might force change but being able to open up about them could easily help others in similar situations, help prevent some from ending up there and also find new, and even better, ways of normal Thought (briefly) about a picture of the drain and/or compression socks but that really would be taking the tenuous links to professionalism a little too far, so instead a picture of a gift from someone who knows me so well - morse code for f**k cancer. #nevergiveup #alwayslearning

These results are a testament to the compassion and quality of care being offered to people with cancer by hard-working NHS staff but they also highlight where improvements are needed. In the 2024 Scotland Cancer Patient Experience Survey, 95% of respondents expressed a positive view of the cancer care they received. Cancer can disrupt every part of a person’s life – from personal finances to people’s mental and emotional wellbeing. Everyone diagnosed with cancer in Scotland should be receiving care and support that is right for their individual needs. More must be done to ensure people receive a written care plan to help manage both their clinical and wider needs. Far too many people did not receive financial information, even though cancer can cause huge financial anxiety and impact by more than £1000 a month on average. Such gaps in meeting the wider needs of people with cancer must be addressed. Much is already being done, but it is vital these results are harnessed by everyone working to deliver cancer care in Scotland, so people can get the personalised information, care and support they need, when they need it the most.

This general election needs to be a turning point for people affected by cancer. CRUK has made huge progress on cancer in the last 50 years. But, today, waiting time targets aren’t being met. Many face unequal access to diagnosis and treatment. Over the next decade, there is a £1bn funding gap for life-saving research into cancer. But this can change. You can drive that change. Cancer Research UK’s manifesto details the policies that, if enacted by the UK Government, can help prevent 20,000 cancer deaths every year by 2040. Nearly 1 in 2 of us will get cancer in our lifetimes in the UK. Behind each statistic is a real person affected by cancer. Partners holding hands, waiting for news. Friends missing at birthdays. Parents up late worrying.  We need the next government to act on cancer. If the next UK Government commits to backing research, ending cancers caused by smoking, driving earlier diagnoses, ending the waits, and leading on cancer, we can transform UK cancer survival to be amongst the best in the world. Ahead of the general election, will you back that ambition and make cancer a priority? The aim is simple: longer, better lives.  Will you sign and share?

As I said last week, it's October and it's time for Pink! Pink October is about Breast Cancer Awareness. According to the World Health Organization: "Breast cancer is the most common cancer globally with around 2.3 million new cases every year. It represents one in eight cancer cases in both sexes and a quarter of all cancers in women, with 70% mortality occurring in resource constrained settings. Health system barriers and patient level factors with low levels of awareness and knowledge are contributing to low uptake of early detection services, with resultant late-stage diagnoses and poor outcomes. In many resource-constrained settings, breast cancer affects a relatively younger population significantly contributing to premature mortality and maternal orphans. The World Health Organization launched the Global Breast Cancer Initiative (GBCI) in 2021 to reduce mortality rates by 2.5% per year by 2040 to save 2.5 million lives through three key pillars of action on health promotion for early detection, timely diagnosis; and comprehensive breast cancer management. The breast cancer awareness month (BCAM) is celebrated globally every October to create awareness about breast cancer. This October we will highlight the importance of early detection, timely diagnosis, comprehensive treatment and the need to provide support for persons with lived experience including through patient navigation. It also provides an opportunity for all stakeholders to review progress, reflect and renew commitments in tackling the disease and to build momentum to address the existing disparities and challenges in access to breast cancer care." Yes, you read that right. Breast cancer accounts for 25% of all cancer in women and in resource contrained settings the mortality rate can reach 70%! Seventy percent! With that in mind Lucrecia Jarab, Jorgelina Venturi, Fernando Joaquín Cabaña and I joined forces for some fun and to support the locinpink cause among the team at tbo, tbotalent and beyond. Maria Jose De Michiel, the mother of my three eldest children joined the party as did my youngest daugher Amanda. Maria Jose has been supporting #breastcancer #awareness causes for 12+ years now with her local field hockey team. Now, we all love pink, but most importantly get informed and get tested early AT LEAST once a year.

Today on World Cancer Day, let's unite in the fight against cancer, supporting those affected. Together, we can make a difference and strive for a cancer-free world. Cancer knows no bounds, and neither do we. Gold Coast Hospital Foundation’s Cancer Patient Transport Service (CPTS) is our flagship commitment. In a community burdened by rising costs, it's the most vulnerable who bear the brunt. The journey from diagnosis to ongoing treatment is gruelling. Hospital visits, specialist appointments, and tests become a relentless routine. Cancer's impact is felt by all - patients, families, and friends. Since 2015, we've grown from one vehicle to three, making 5,500 vital journeys annually, supporting over 2,000 Gold Coast cancer patients each year. Research speaks volumes: 'Transportation is a critical social determinant of health, disproportionately affecting society's most vulnerable.' 'Lack of transportation access influences cancer patients' treatment decisions.' Patients affirm our impact: 'This service is my lifeline to treatment,' and 'It eases the burden on my family juggling work and childcare.' Join us in making cancer patients' journeys a bit more bearable. Your support truly changes lives. https://lnkd.in/gejZ8aTS