Community News - Macmillan Online Community

MDS, MPN, ET, PV and MF - support with rarer blood cancers

September was 'blood cancer awareness month' and we shared a Community News blog about the support available on the Community. You can catch up here , if you haven’t yet had a read. We’re following up on September's blood cancer awareness blog to let you know we’ve created a new forum for rarer blood cancers. You can find the new myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum within the ' other cancers group' here on the Community. If you’re looking for support with myelodysplasia (MDS) or myeloproliferative neoplasms (MPN) including essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF), the Community now has a dedicated space for you. When you or your loved one are diagnosed with one of these rarer blood cancers, it's likely that you hadn't…

Steph - Online Community Team
Urology Awareness Month

Urology. Defined in the Oxford dictionary as the branch of medicine concerned with the function and disorders of the urinary system. It’s always been a sensitive topic and often leads to not getting the medical attention that is required when a problem occurs in this area. In fact, according to the research done by Bupa , one in five UK adults who have experienced potential cancer symptoms, have not seen a doctor due to being too embarrassed to go. In this blog, we take a look at the Community to help break down the stigma of embarrassment and taking better precautions to look after our urological health. Listed below are the different areas in the urological system than can be affected by cancer. They are as follows: Prostate Bladder Kidney Testicular Penile Each link contains…

Syed - Macmillan
Making cancer treatment decisions

When you have been diagnosed with cancer, you may have a choice of different treatments you could have. Depending on your diagnosis, you might also be considering whether you would like to have any treatment. Making decisions about cancer treatments for yourself or a loved one can sometimes be difficult. It’s important that you feel you have all the information and support you might need to make the right informed decision for you. “I have changed my mind numerous times over the last week but I think that I could go on re-evaluating the pros and cons for ever and a day.” Community member, Prostate cancer forum It’s natural to have lots of questions about cancer treatment, whether you are a cancer patient or a family member. You might be feeling worried about side effects and quality of…

Eliza - Macmillan
The worry of waiting

Waiting for test results can be a difficult time. It may take days or weeks for the results of your tests to be ready. You may be waiting for your treatment to start or to speak with the consultant about a concern you have, either way, waiting can be hard. The waiting for results and dealing with the unknown blog explores that if you’re feeling worried, you’re not alone in feeling this way. Click on the link if you’ve not yet read this blog. Today we’re going to look at some of the practical things you can do when you’re waiting. It’s good to reach out for support if you’re feeling worried and anxious and the Community is here to offer some friendly reassurance and support. Have you been in a similar position to these members? If you have found yourself in a similar situation to these…

Megan- Online Community Team
Can we talk about vulvar and vaginal cancers?

Can we talk openly about vulvas and vaginas? It’s Gynaecological Cancer Awareness Month and we’re taking the opportunity to raise awareness of the rarer gynae cancers. We understand that many people find sexual organs to be an embarrassing or awkward subject. Many people might not even know the correct names for these body parts. So what happens if you get diagnosed with cancer (or a pre-cancerous condition) ‘down there’? We’re highlighting how women, trans men and non-binary people can find support from the Community. It’s a place where you can be completely anonymous and chat with others in similar circumstances. Whether you’ve just been diagnosed with vulval/vaginal cancer, need emotional support or practical tips to help with healing after surgery, you’re likely to find someone…

Steph - Online Community Team
Alone in this, together. Blood cancer awareness.

Receiving a cancer diagnosis can be an isolating experience. "Im just feeling so lonely because I cant talk to my loved ones about my fears because I know how much it will make them be afraid!" julielovesGoats, New to the Community group . This can be even more true for those who receive a rarer cancer diagnosis, like some blood disorders. In today’s Community News Blog we’re hoping to create a space where those diagnosed with a rarer cancer can come together and share their experience. We will also share some resources and direction for those affected by blood disorders, to honour blood cancer awareness month this September. Feeling isolated is something that most people have experienced in the last year in one way or another. The Online Community is here to remind you that you are not alone…

Tom C - Macmillan
Parents of children with cancer: do you feel supported?

September is Childhood Cancer Awareness Month . Today on Community News, we’re talking about parents. No matter how old your child is when they are diagnosed with cancer, the news can still be devastating. A child’s diagnosis can affect all family members, and it’s important to find the right support. “[I am] finding some comfort in the fact that there are other people who have gone through and go through what I am going through…My son has had a malignant aggressive tumour found in his femur. It has all been INCREDIBLY quick. Our world has been turned upside down.” Community member, “Parents of children with cancer” forum Here in the Online Community, many members say things like that it can really help to share experiences. Lots of members have talked about looking after their child…

Eliza - Macmillan
Kath’s story: living with a stoma and building confidence.

You may have read Kath’s recent blog ‘ Living with bowel cancer and a stoma ’, where she shares some of the physical and emotional challenges that she has faced. In this blog Kath is talking about how living with a stoma has affected her self- confidence. Living with a stoma can be a big change for some people and these changes can take some time adjust to. By sharing her experiences, Kath hopes to help others and to let you know there are ways to build your confidence and adapt your life. Although there have been some difficult moments, Kath wants to make people aware that you can still lead an active and fulfilling life when living with a stoma. I've been a stoma user since 2011 and hardly think about it - ten years down the line. Going back ten years things were very different. For…

Megan- Online Community Team
Our Growing Community

There are many different reasons for joining the Online Community as it provides safe spaces for patients and loved ones to get support from real people. Real people who can truly understand what it’s like being affected by cancer. Today’s blog looks at some of the conversations that you’re getting involved with in our Community groups this month. If you want read last month’s round up blog ‘ What does the Community mean to you? ’ you can do so by clicking here . We usually see lots new members joining the Online Community for support each week. Whether you've been with us for a while, or you've only just joined, it's important to know there's lots of support available for you. Our Community is a place for patients, family members, carers and loved ones to access emotional support and practical…

Megan- Online Community Team
Cancer & me 35 years on - Metastases and radiotherapy

Sketch, and all other artwork, by Willo Today we are back with the next instalment of Willo’s blog, ‘Cancer & me 35 years on’ . Willo was diagnosed with Anal cancer in 1986 while living in Zambia. In this blog series Willo has been sharing her experience of living through and beyond cancer. Alongside sharing everything she has been through, Willo has also been sharing the amazing artwork she created during this time in her life. From talking about how she moved back to England after her diagnosis to start treatment , to sharing her experience of going back to art school after her colostomy surgery, Willo has shared with us her whole journey in the hope that it will help others to read about what she has been through. As one Community member commented after reading Willo’s blog, ‘ 35 years…

Former Member
Head and neck cancer - when food is fuel

We know that receiving a cancer diagnosis can be scary, especially when you don’t know what to expect. Members in the Community have been there. They can help you to face those worries. Through shared experiences, they can help you face the unknown and make you feel much less alone. In this Community New Blog, we’re highlighting the head and neck cancer group and some of the issues members face through treatment and beyond. We’ll be focusing on eating problems, maintaining weight through treatment and staying as healthy as you can. Many members come to the Community looking for support with eating the right foods through treatment and dealing with side effects. "End of week 3 and taste buds have gone. Does anyone have any ideas of what foods they can still taste?" - Carran, head & neck…

Steph - Online Community Team
Have you seen these conversations?

In today’s blog, we’re catching up on some recent conversations from across the Online Community. Members have been offering each other lots of support lately. From side effects to talking to children, members have been talking about everything and anything around their cancer experiences. Even if you have a different type of cancer, remember that you're still welcome to talk to other members in groups across the site. Why not join in and find support? “How was/is the experience of chemo and how do you deal with the side effects?” Bertz, “Bowel (colon and rectum) cancer group In the “Bowel (colon and rectum) cancer” group, member Bertz started a conversation around managing side effects from chemotherapy. Lots of members have replied to share their own experiences. Kareno62’s tip is…

Eliza - Macmillan

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