Cancer talk may not be for everyone

@ben2026

Please don’t apologise for asking personal questions. I completely understand how overwhelming and frightening this all feels, especially when you are stuck in that uncertain place of not knowing but fearing the worst. I have been there, and it is an incredibly hard place to be.

To answer your question, yes, I do feel I made the right decision not to tell my family straight away. At the time, we were still grieving the loss of my mum, and with Christmas approaching, I didn’t want to add more worry without having any clear answers. After hearing the GP’s initial prognosis, I struggled with some very dark thoughts and simply wasn’t in the right headspace to explain something so serious when I didn’t even have the full picture myself. I waited until after my first appointment with the oncologist before I shared anything. By then, I had more solid information, which helped me feel more emotionally grounded and made the conversation easier to manage.

The only people I told early on were my CEO and my secretary at work. That was only because they needed to know because I had to start rearranging my diary for medical appointments and adjusting my working hours. I trusted them to keep it confidential, and they were both incredibly supportive, which helped make a very difficult time a little more manageable.

Deciding when to tell others is such a personal choice. For me, it felt right to wait until I had a better understanding of what I was dealing with. Over the years, I’ve spoken to other suspected cancer patients. Some told their families straight away, others chose to wait, just like I did. It really depends on the individual and the circumstances. There is no right or wrong way, only what feels best for you.

You also asked how long I’ve had my cancer. I was officially diagnosed in early May 2018, although my symptoms had started the year before. My cancer is in the bone marrow and is considered a rare form, usually seen in men in their seventies or older, so to be diagnosed at 57 as a woman was very unexpected.

When you see your specialist next Thursday, I really hope it brings you some clarity and reassurance. I remember how different it felt once I finally sat down with someone who truly understood what they were looking at. My oncologist was calm, clear and reassuring. There was no panic, just steady explanations and the words, “There’s a lot we can do.” It was a complete contrast to how my GP had handled things. Her words, “I can’t offer you any guarantees,” still stay with me. I know she probably meant to prepare me, but the way it was said left me frightened and unprepared.

That is also why I would gently suggest being careful with Google. In the early days, my oncologist advised me not to search for anything online, and I wish I had listened. I thought there were only three types of blood cancer, but there are actually more than 120. Google tends to focus on the most serious or well-known ones and can lead you down a rabbit hole of worst-case scenarios that may not apply at all. The most reliable information will come from your medical team, once they have carried out the necessary tests.

I also want to add that, over the years, while sitting in waiting rooms, I’ve often spoken with other patients who were anxiously waiting for their test results, upset, scared, and fearing the worst. And many times, I’ve seen those same people come out of their appointments visibly relieved, even in tears of joy and relief, because their tests came back clear.

Not every lump or unusual symptom leads to bad news, and sometimes the outcome is much better than feared. I found that the fear and the not knowing were the hardest parts for me. I was actually very relieved when I finally got the diagnosis. I’ve been with the same medical team for seven years now, and they truly feel like an extended family to me.

I know the days leading up to your appointment won’t be easy. Just remember, you’re not alone, myself and other members are here for you whenever you need a bit of support. xx

@ben2026

Thank you so much for the update. I’m so sorry you’re going through all of this. It sounds incredibly painful, and it’s so hard when life is suddenly turned upside down by illness. I think you’re coping incredibly well, and I really hope the biopsy and scan bring some clear answers soon. Waiting for results is such a horrible, uncertain time. I’ll be thinking of you and hoping for the best in the days ahead, sending you strength. xx

@ben2026

Hello Ben, I just saw your post, and I’m really glad to hear you’ve had your scan done, even though I know it wasn’t easy. Radiographers sometimes notice things during scans that they don’t mention straight away. I remember after one of my CT scans, I saw a group of staff gathered around my images on the screen. When I came out from the changing room, they asked when I’d be seeing my doctor. I asked directly what was going on. At first, they were hesitant to say, but I can be persuasive when I need to be. Eventually, they told me they’d seen an enlarged spleen, which led to a series of follow-up scans and ultrasounds.

I know how uncomfortable those scans can be, especially when they press on sensitive areas. The pain can linger for hours or even days afterwards. And the waiting for results can be even harder. The uncertainty is mentally and emotionally exhausting. I’ve had my consultant call me as late as 8 p.m. on a Sunday evening, asking me to come in urgently the next day. So, sometimes the hospital does get back to you sooner than expected. Try to stay hopeful.

I also understand the pain from biopsies, especially since yours were around the lip and tongue. Those areas are incredibly sensitive. I’ve experienced similar pain and swelling from the many bone marrow biopsies I’ve had over the years, and I know how long recovery can take. It’s frustrating, but healing takes time, and it’s important to be patient with yourself.

When it comes to how others deal with cancer, every journey is different. For me, my hope lay in a stem cell transplant. After months of testing, they found a 10 out of 10 match, and it felt like such a relief. I was really excited, thinking I was going to be healthy again. Unfortunately, the pre-transplant treatment caused major organ failure, and I developed sepsis twice. I ended up in intensive care and never got the chance to go through with the transplant. That was incredibly difficult six week hospital stay, and it felt like I’d lost my last real hope.

That was four years ago. Now, my cancer is managed. It’s been a long and difficult journey, but I’m still fighting and holding on. I try to live as normally as possible. I still work, socialise, and do my best to keep it all at the back of my mind. That’s how I cope.

Although the transplant was my only real hope for a cure, and I never received it, I can’t fully express how devastating the loss of that hope was. All my expectations were pinned on it. But I owe my survival to the real heroes in my story, blood, platelet, and plasma donors. Without these incredible, selfless individuals, I wouldn’t be here. Their kindness has saved my life time and again.

I’ve had more than 365 blood transfusions over the years, and I’m deeply grateful to the platelet donors whose generous donations helped my blood clot, preventing me from bleeding to death, and to the plasma donors, whose donations of proteins and antibodies that supported my immune system when I was too weak to fight infections myself. Without these generous donors, I wouldn’t be here today.

Ben, I truly hope your results come back soon. The waiting and overthinking are incredibly hard, and I’m wishing you strength during this time. You might not see it now, but there will be brighter days ahead. xx

@ben2026

Hi Ben, I waited a few days before replying, hoping others might share their thoughts too. I know cancer is a difficult subject for many. People often stay quiet, not out of indifference, but because they are unsure what to say or how to say it. That said, I am sure other members are wishing you well and hoping for the best possible outcome.

I understand how much you are dealing with at the moment. The waiting, the worry, the urge to look things up, I did exactly the same. It is completely natural to want answers when you are feeling scared.

I really hope you hear back soon with the results of your biopsy and scan. If you feel comfortable, please do let us know how things go. Keep holding on, you’ve got more strength than you think. xx