Community News - Macmillan Online Community

Cancer & Me 35 years on – vol 1 – To begin at the beginning

With my German Shepherd puppy before my cancer appeared. Today on our Community News blog we are sharing with you the first volume of our new series called ‘Cancer & me 35 years on’ . In this series, Willo, known on the Community as patsyann85 , tells us about her experience of being diagnosed with Anal cancer in 1986 while living in Zambia. We will be sharing more of Willo’s writing and incredible artwork throughout the next few months on the Community News , here is Willo to tell us more about her writing: As I am a survivor (thus far) of two primary tumours, one recurring – and later with metastases (30 years ago at the time of writing), I hope my story might offer some support and encouragement to those currently in a similar daunting situation. To begin at the beginning... ‘My…

Former Member
Here's what you need to know - Community Improvements

On Tuesday 29 th June, we’ll be releasing the first of our improvements into the Community. You can read more below about how this will affect the site on Tuesday afternoon, and what changes you’ll see once the release has been done. On May 5 th , we attempted to go live with these changes. Unfortunately, we encountered some unforeseen issues which meant we weren’t able to go live at that time. Since then, we’ve been working really hard behind the scenes to get this right. We hope you feel the benefit from the first of our improvements soon, and we'd love to hear any feedback you have for us about these changes. Key information The release will happen on Tuesday 29 th June. The Community will be ‘down’ between 1pm – 4.30pm. This means you won’t be able to view, or log in to the site…

Ellen - Macmillan
Let’s talk about treatment: Prostate cancer and zoladex injections

In today’s Community News Blog, we’re kicking off Prostate cancer awareness month and our new “Let’s talk about treatment” series. This series will feature stories from members of the Online Community around what their treatment experience was like. Firstly, we have Roger, known as Pozthinker on the Online Community cancer forum . Roger was diagnosed with prostate cancer in 2011. They’re here to talk about zoladex injections and managing their long-term symptoms. Zoladex is a type of hormone therapy . It is also known as Goserelin. People might have it as a treatment for breast or prostate cancer. I was first diagnosed with prostate cancer in 2011, the year I was 66. (Yes, I'm 75 now.) I first opted for radiotherapy, but I was unable to hold my water. However, I was able to stay with the…

Eliza -Online Community Team
Being bodies: sex and erectile dysfunction

Our new series “Being bodies” aims to explore our relationships with our bodies, from head to toe and everything in between. We’re kicking off our series by talking about erectile dysfunction, which affects up to 80% of people with penises after pelvic cancer surgery. Erectile dysfunction (ED) can also affect people on treatments which affect their hormone levels. This can include people who have been diagnosed with prostate cancer and penile cancer, amongst others. ED can affect people for lots of different reasons, both physical and emotional. It can have a big effect on people’s sex lives, relationships and self-esteem. If this is you or your partner, you’re not alone. Today we’ll be discussing this with the help of quotes from Lorraine, a nurse specialist and sex therapist. “There is…

Eliza -Online Community Team
Cancer and the menopause - Hot Flushes

We often see members coming to the Community, asking questions and looking for support with menopausal symptoms. Some cancer treatments can cause an early or temporary menopause, or similar side effects. You might be trying to manage menopausal symptoms alongside cancer, or whilst supporting someone else who is living with cancer. In this new mini-series of blogs we’ll be sharing links and tips for managing symptoms and raise awareness around the menopause and related symptoms. One of the most common menopause and hormone-related symptoms, are hot flushes. They can be fairly mild, or severe enough to cause great discomfort and sleep disruption. If you’re currently struggling with hot flushes, I hope the icy landscape images at least give the illusion of cooling you down whilst you read…

Steph - Online Community Team
Telling children about cancer

Alongside receiving a cancer diagnosis, one of the toughest moments a person can face is having to tell their children that they have cancer. Finding the words can be difficult, especially when trying to process the information yourself. It’s challenging but a conversation many will have to have, especially if mum or dad could potentially be struggling physically. In this blog, we take a look around the Community and see how other members have approached this sensitive subject. How do you approach this subject? Is there only one way to approach this? You can ask a professional such as a doctor or nurse, but maybe they haven’t experienced what other members have. The things they wish they had done differently whilst telling their children as well as the things that worked for them. The most…

Syed - Macmillan
Life after treatment: Dealing with health conditions after cancer

Being cancer free does not always mean going back to how life was before. For many people, it means learning to live with long-term health conditions. The Online Community is here for anyone affected by cancer to find support from people who understand. Whether you have just been diagnosed, are going through treatment, or are adapting to life after cancer. Last year, we invited members of the Online Community to share what challenges they have experienced after treatment . This blog brings together some of what was shared. Long-term physical effects from cancer treatment Many members spoke about side effects that continued long after treatment ended, often affecting daily routines, mobility, and confidence. One member described chemotherapy-related nerve damage. “I developed peripheral…

Dylan - Online Community Team
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
Planned Community Maintenance - 11th August, 7am-10am

Hi everyone, We’re writing this afternoon with an important update. Tomorrow morning, Tuesday 11 th August , the Community will be entering a read only state from 7am until 10am . This is to allow us to fix two issues that we know users are experiencing just now. This maintenance will fix the below: Logging in issue where users are receiving the error message ‘the user already exists’. See below a screenshot of the error message: Being logged out every 30 minutes or so. Whilst in a read only state, you will still be able to view the Community and read all of the discussions on the site, but you will not be able to log in or post. The main Macmillan website (macmillan.org) will also be unavailable from 7am-10am. If you feel you need some support in the meantime, please remember…

Ellen - Macmillan
The worry of waiting - sharing support on the Online Community

Living with cancer can often mean living with uncertainty and anxiety. Waiting for test results, can be a particularly worrying time for you and your loved ones. Whether you’re awaiting a cancer diagnosis, a referral or reviewing a cancer treatment plan, the waiting period might feel really difficult. You might find it helps to be able to talk to other people with cancer. Some people might find that they are faced with delays or uncertainties with their cancer care. In this blog we will be sharing experiences and coping strategies from around the Online Community. We will also share some useful links to help you advocate for yourself and find the right care and support. Help with your emotions and mental health when waiting Both you and your family members and other loved ones might…

Steph - Online Community Team
Cancer and gardens - enjoy garden and gardening chat with members of the Online Community

Image credit: tvman - part of my vegetable garden Members of the Community have been talking a lot about gardens and gardening. If you’re struggling with cancer, or the effects of cancer treatment , you might benefit from gentle activity around the garden, or simply just sitting in nature. It’s often said that the physical activity of gardening is beneficial to both the body and mind. Whether you have your own garden, you’re in a gardening group or have access to a community garden , you might find there are health benefits to getting outside. Let’s have a look at some of the conversations about gardens and gardening from across the Online Community. Community member tvman regularly shares the benefits of gardening through regular updates about his fruit and vegetable growing in the…

Steph - Online Community Team
Check-up appointments after endometrial cancer treatment- Jane's story

Jane is recovering from Endometrial Carcinoma Sarcoma and is one of our Community Champions. She shares her experiences to help others who are on a similar journey. Jane has kindly put together this blog to share her recent check-up experience in the hope that it will reassure those who are about to undergo one. "My cancer was endometrial carcinoma sarcoma 1b Grade 3 with LVSI. When active treatment ends for Endometrial Cancer , it is normal for regular check-ups to be scheduled. There can be some variation between hospitals and what may happen due to different diagnoses, stages, grades, and treatments, but this is my experience. I had a total laparoscopic hysterectomy with bilateral salpingo-oophorectomy . This was followed up with carboplatin and paclitaxel chemotherapy and external beam…

Megan- Online Community Team