Community News - Macmillan Online Community

“I just want to be me again” - Jon's story, volume 2

We first heard from Jon in the first of his blog series where he talked about his diagnosis, and what led him to share his story. Our members often talk about ‘scanxiety’ and how difficult it is in the run up to getting a scan, and then waiting for results. In today’s blog, Jon talks a little more about his experience of ‘scanxiety’ and the impact it’s had on him. Scanxiety It’s been going on for a while now. It always follows the same routine. Somehow, subconsciously, I just know it’s coming. I start to tense up, and my sleep starts to suffer. The sleep I manage to get, I spend grinding my teeth. When I’m awake, I’m just snapping at people or being irrational. Cancer does that to you. All that broken sleep ages you too. “Oh you look tired?” “Yeah Karen, I haven’t slept in three weeks…

Ellen - Macmillan
Everyone has a Story to Tell

January 30 th to February 6 th is national storytelling week. In today’s Community News Blog we’re talking about the power of healthy distractions. There’s nothing quite like getting lost in a good book or a great film. We widen the conversation here though to talk about anything that can help us feel better, by distracting us for a while. We also take some time to acknowledge more of your stories by highlighting the Macmillan Digital Story Telling Project which is online workshops hosted by Macmillan to help people share their story. In difficult times distraction can be a useful companion. While we often acknowledge the importance of being mindful and living in the present, healthy distractions can help to give us that mental breather we all need from time to time. What’s your favourite…

Tom C - Online Community team
Resilience - Coping in the eye of the storm

Resilience is defined as the ability to recover quickly from difficulties. The ability to be resilient is often a lifelong aim for many people. Looking after yourself and being resilient might be more important in your life now, than ever. Dr Russ Hargreaves is a Counsellor and Clinical Supervisor here at Macmillan. Russ is here to talk you through finding your personal resilience, and what helps him stay resilient. As I write this blog, we are in the midst of yet another Covid-19 lockdown. For some, this has been a huge inconvenience. For others, possibly the most worrying time of their lives. Others still have appeared to breeze through it, taking each new challenge in their stride. I don’t know which camp you are in, but I dare say you have had your moments over the past year. I certainly…

Eliza -Online Community Team
You never see it coming - Jon's story

Jon had barely heard of penile cancer before his diagnosis at 40. To help raise awareness and share his experiences, he started sharing his story across social media to keep his family and friends up-to-date. This led to the knob blog , where Jon continues to talk about his experiences of diagnosis, treatment and side effects. In today’s Community News blog, Jon reflects on his experience with penile cancer, and how humour and his blog have helped along the way. *Early disclaimer: My blog posts might be sweary, and can be extremely graphic. I will often make light of what is an incredibly serious subject too. You have been warned!* Cancer is going to affect half of us We all know someone that’s had cancer, but we never really think it’s going to happen to us. At least, I certainly didn…

Ellen - Macmillan
Cancer and me 35 years on - Vol 8 - Lanzarote & Menorca

On a very cold and grey January afternoon during a national lockdown, thinking about holiday memories can be a lovely pass time. National travel restrictions mean it may be a while before we can pack our suitcases excitedly again, but luckily today our guest blogger Willo, known on the Community as patsyann85 , is here to tell us about her first holiday in Europe after recovering from her Abdominoperineal Resection procedure. To catch up with the rest of Willo’s blog series, ‘Cancer & me 35 years’ on, click here . Lanzarote & Menorca At the end of April and beginning of May, my friend Alma invited me to spend two weeks with her at her time-share in Lanzarote – and another friend offered to pay my airfare, so footloose and fancy free for the first time since I was 14, off I went for my first…

Former Member
Cancer and food - how the Community can help

We hear that many of you come to the Community looking for help around taking control of your diet, or worried that you might not be eating the right foods. Cancer or treatments can sometimes cause problems with eating, or may restrict what you can eat. Whatever your situation around food, there is usually some support to be found in the Community. Sugar-awareness is important to a healthy diet, but perhaps not for the reasons you might have seen on social media. We hear there can be lots of misleading information around about sugar and cancer. Community member Harri53 had started drinking more fruit juice and came to the Community for advice about the amount of sugar this contained. “I am concerned that this sugar intake may be worsening my condition.” - Community member Harri53 in…

Steph - Online Community Team
Cervical cancer Prevention week

This week is Cervical cancer prevention week. We wanted to share some information and resources to help answer many of the questions asked here on the Community. Please remember that you are welcome to post in our Ask a Nurse section or contact the Macmillan Support Line if you need some additional guidance. Very early stage Cervical cancer may not cause any symptoms. It is usually found and treated because of Cervical screening tests. What are the symptoms of Cervical cancer and when should you get tested? It’s good to know the potential symptoms of cervical cancer. Whilst many of them can be symptoms of other conditions it is important that we speak to our GP with any of the following; Heavier periods that you normally would have Vaginal bleeding between periods, after sex or…

Megan- Online Community Team
Make Blue Monday a You Monday

Today is known to be the bluest day of the year, so why not make your Blue Monday a YOU Monday. Last year Jimmy published ' Blue Monday is the most depressing day of the year? Only if you insist! ' in the Community News Blog. Here he talks about the formula that explains why we feel so depressed on this day. Click here to read more. What is Blue Monday? If you don’t know what ‘Blue Monday’ is, it is known to be a day where people feel at their lowest. After the recent festivities and the new hope of a new year, the annual ‘winter blues’ creep up on us. It is ok to feel down, but when we feel this way often it may be a time to practice some self-care. Sometimes we can feel guilty for wanting or taking some time for ourselves as our day to day lives can demand so much of our time or we are focussed…

Megan- Online Community Team
Exercise and moving your body

Audrey who is a Macmillan Nurse Specialist on the Support Line, and in our Ask an Nurse section, has been speaking to people living with cancer about staying active and exercising. In today’s Community News Blog, Audrey is sharing information and some resources at the end to help you move your body. You will find the resource links at the bottom of the page. In a time where we are all trying to adjust to the constant changes that covid-19 is having on our lives, it is hard to keep up with it all. Having a cancer diagnosis and treatment during the covid-19 pandemic can be scary, lonely and life-altering. Trying to keep a routine and remain active can be even more difficult for people living with cancer. Knowing how best to stay safe and remain active is a common question cancer patients…

Megan- Online Community Team
Waiting for results and dealing with the unknown

We know from our members that the waiting and uncertainty around test results and worrying symptoms can be one of the hardest things to deal with. "The waiting really is the worst part" Xxnataliexx "If you read the posts for all the ladies of this forum, we all agree, that the hardest thing is the waiting between tests and results and worrying." MrsBJH The coronavirus pandemic has unfortunately had a big impact on diagnosis and treatment for people affected by cancer. This has made waiting times longer, and unfortunately for some people the anxiety that comes with it is extended too. "I was due to have a liver resection at Addenbrookes but learnt today that they have stopped, for covid, all liver cancer surgery." Elley019 For concerns around cancer and covid-19, you can find Macmillan…

Tom C - Online Community team
Radiotherapy: Tips from the Community

Radiotherapy is part of many people’s experiences with cancer, and lots of members talk about Radiotherapy here in the Online Community. No matter what treatment you’re experiencing, here in the Community there might be someone who really understands. We’ve collated some of our members’ tips and support below. Radiotherapy uses high-energy rays, such as x-rays, to treat cancer. People can have radiotherapy for different reasons, and you can read more about how radiotherapy works, side effects and more on Macmillan’s information and support website . It’s important to remember that the tips below are from Community members’ personal experiences. Everyone’s experience of cancer and radiotherapy can be different. If you have any questions or concerns about radiotherapy, it’s important to seek…

Eliza -Online Community Team
Supporting yourself while supporting someone with incurable cancer (Part 2)

A loved one’s cancer diagnosis can have just as large an impact as a personal diagnosis. Our Cancer Information and Support Advisor, Jenna, is here to talk through some of the complicated emotions you might feel, and ways you can help yourself cope. If you missed the Jenna’s first blog post, you can read it here . In Part 1 of this blog series, I talked through the huge emotional impact coping with the incurable diagnosis of a loved one can have. We discussed the importance of being gentle with yourself and listening to your emotions to help you understand what you need. In Part 2, I hope to share some ways to support yourself through what can be such a difficult time. Just as everyone’s emotional response is individual, what each person needs to help them find their way through is also…

Eliza -Online Community Team

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