Community News - Macmillan Online Community

Our 6 tips to manage the NHS if you're struggling - help from Macmillan and the Online Community

Lots of people are worried about pressures on cancer care within the NHS. We know that waiting for results and worries about delayed cancer treatment might affect your general health and wellbeing. Ellen Lang, Clinical Information Manager on the Macmillan Support Line, said: “Every day we’re receiving heart-breaking calls from people with cancer who don’t know where else to turn. They’re frightened about their health, distressed about the rising cost of living and, despite the very best efforts of NHS staff, they're really struggling to access the care and treatment they need. We’ll always be at the end of the phone for people living with cancer, for whatever they need to ask; our helpline is open 8am-8pm 365 days a year for anyone who needs practical, emotional or financial cancer support…

Steph - Online Community Team
What Community members wished they had known before surgery

In the latest of our new series of blogs sharing hints and tips from members, we asked members of the Online Community, "What do you wish you had known before you had surgery?" Members shared personal experiences alongside the questions they asked, practical tips and some reassuring messages. This blog features conversations about a range of different surgeries that may be relevant to you. There is also some general advice to help you prepare for surgery and appointments. Click on the blog headings to help you navigate the different sections in the blog. Table of Contents Being prepared and recovery Hysterectomy TURP surgery Tracheostomy, Laryngectomy and bypass tube Thyroid surgery Cystoscopy Laparoscopic anterior resection Breast cancer surgery Skin cancer surgery…

Megan- Online Community Team
"We discussed how to talk to the people we love..." - Attending a Death Café...

This week marks Dying Matters Awareness Week , and to recognise this, David – author of our recent Life after cancer piece, is back to share his thoughts on death – in particular, his recent visit to a Death Café – something he describes as being a “remarkable” experience. David’s piece also coincides with Macmillan’s current ‘Let’s Talk About Death’ campaign, which seeks to encourage people to have conversations about death and plans for it. You can find out more on Macmillan's campaign, alonside information and support on making plans, via this page of our website. Enjoy… The doctors, huddled at the end of my hospital bed are muttering, just out of earshot. My sister is staring at me, trying to lock my gaze, as if she is searching for an answer, or a reassurance of some kind. I feel…

Former Member
Living with incurable cancer – Online Community support

Macmillan’s Online Community can support you when you have incurable cancer. Only those who have an incurable diagnosis can truly understand how you are feeling, so it can be helpful to connect with others in a similar situation. If you have an incurable cancer diagnosis, you may find it helpful to join the Living with incurable cancer forum as an additional source of support. The following will introduce you to the group and highlight the emotional support this forum can offer. We will feature discussions and posts from people already posting in this group alongside other sources of support. Why join the Living with incurable cancer forum? It's good to connect with people who have a similar cancer type in the other cancer forums so you can support each other through similar treatments…

Megan- Online Community Team
How Reflexology helped me - Charlie's story part II

In today’s Community News Blog, we’re hearing from the lovely Charlie. Charlie began to share some of her experiences with us back in February, where she kindly put together some videos to show the Community how they can use simple reflexology techniques to help them. Charlie is a Clinical Reflexologist and was diagnosed with breast cancer in January this year. She’s been using some reflexology techniques to help her cope with the side effects of treatment. Today she’s sharing some tips to help with heart burn, sleep and nausea. We’d like to say a big thank you to Charlie for sharing more about her journey, and for taking the time to put together these videos especially for us here on our Community cancer forums . Since my last blog the it feels as though an awful lot has happened to me and…

Ellen - Macmillan
“Don’t be afraid to speak up and say I am struggling”

Looking after your mental health and wellbeing is so important as it influences the way you feel and cope with challenging situations. Today, one of our fabulous Community Champions Gbear is sharing her personal mental health journey in the hope it will help others who may be going through something similar at the moment. My name is Sarah or GBear as I am known in the Community. I first came to the Community in 2017 when I had just had my hysterectomy to remove cancer. I counted myself very fortunate that I was low-stage and only needed a hysterectomy as treatment, but was told they were holding off radiotherapy as a standby if needed. When I was diagnosed, I was full of anger and self-doubt as I was constantly fobbed off and even made to feel I was making up stuff and that I wasn’t really…

Megan- Online Community Team
Anxiety and cancer - support from Macmillan's Online Community

Members of the Online Community often talk about experiencing anxiety. This might be following a cancer diagnosis or whilst waiting for a scan or results. Anxiety levels can also increase both before and after cancer treatment. This blog will focus on what the Online Community has shared about managing anxiety and the symptoms of anxiety. We’ll highlight some helpful tips and tools shared by our community members and Macmillan experts who are here to help in our Ask an Expert section . The Online Community is a safe and supportive space where you can be open about your emotions. "Anxiety feels like it’s been my biggest demon, it’s particularly bad when I’m due an appointment with the consultant, even though she’s lovely, my mind wanders, and I talk myself into it being bad news…

Dylan - Online Community Team
Brain cancer Awareness month- Simon's Story

Simon is 45 years old from South Wales and today he is sharing his cancer experience as part of Brain cancer awareness month. If you or someone you know has been diagnosed, our Brain cancer groups are here to support you. I have had poor health most of my life due to a neurological condition called Neurofibromatosis. When in my teens I had lots of problems with my bowels and lived with a stoma bag for a year and had a total colectomy which is the removal of the large bowel. This was down to benign tumours in my guts. After this, my mother was told I wouldn’t live to see my twenties but happily, I proved medics wrong. At twenty I was diagnosed with testicular cancer. It was discovered straight away, and I had an operation to remove the left testicle, it was all I needed. As years went by…

Megan- Online Community Team
‘Just remember you are what's important. Take time for yourself' - (Gingebiscuit) Wellbeing round up: December

While December can be a month of excitement, celebration and time spent with family and friends it can also be a very difficult, stressful and conflicting time for many. Taking time to look after yourself amongst the busyness of the season is so important, so why not grab a hot drink, snuggle up warm and read through some of the wellbeing tips from the last month? 'Time is precious, people are precious, and a good mindset says " don't waste energy stressing over stuff that we just don't have control over but put our energy into getting through each day and enjoying the moment" - coffee time I say. - Thehighlander "they will pass and there will be better days." ‘I find myself having lots of low days and what gets me through them is knowing that they will pass and there will be better days…

Former Member
Hospice and respite care

There are often members of the Community sharing personal experiences with accessing supportive care from a hospice. Getting support from a hospice may not be something you have considered before as a lot of people think it's only end of life care that is provided. Hospices are there to help those with a terminal illness or life limiting condition and this blog is sharing some useful information about hospice and respite support. Stay and read more if you want to read the personal experiences of our Community members. There’s so much support that a hospice can offer, and it can be useful to know how they can support you and your loved ones for when specialist palliative care is needed. Usually people access help from a hospice if a someone needs specialist end of life care, however respite…

Megan- 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
Help to Overcome Problems Effectively. Accessing the HOPE course through Macmillan – Wellspring’s story.

It’s normal to feel lots of different emotions when you finish cancer treatment. Macmillan are here to help. The Online Community is a place where you can share experiences and peer support with people going through the same thing. In addition to the Community, you might be looking for further support so you can feel more like yourself again. In today’s Community News Blog, our Online Community member Wellspring shares their experience of HOPE. HOPE, which stands for ‘ Help to Overcome Problems Effectively ’, is a course developed by Coventry University and Macmillan Cancer Support to help people who have had or have cancer to get on with their lives. We will now hand over to Wellspring to tell you all about their experience. “It was winter 2019. 12 months experiencing 6 rounds of FOLFOX…

Steph - Online Community Team