Catching up with the ‘Anal cancer’ group

Catching up with the ‘Anal cancer’ group

Here on the Online Community, we have lots of different groups where you can find support from someone with a similar diagnosis. If you or your loved one have been diagnosed with a form of anal cancer, the ‘Anal cancer’ group is a safe place to find support. In the Community News blog today, we’re going to feature some recent discussions and highlight how supportive our members are. Our members are here to reassure you that you’re not alone, and it’s ok to talk about what you’re going through.

“Ask, Ask Ask away, there's so many people on here that will be able to help and offer support.  Also, don't think anything is too much information or too gross to talk about it. It's all been asked before.”

Community member, ‘Anal cancer’ group 

Some members recently welcomed a new member to the group by letting them know that they can talk about any aspect of their experience with cancer here on the Online Community. Talking about a cancer diagnosis can sometimes be difficult, but in our “Anal cancer” group, members understand how you feel.

Another member posted in the discussion to let other members know that there is no need to feel embarrassed to talk about what you’re going through here on the Online Community.

“Have a good read through this forum you’ll find endless tips and support and feel free to ask us ANYTHING no embarrassment or awkwardness here!” 

Community member, ‘Anal cancer’ group

If you have concerns about symptoms or treatment, please remember we also have our Macmillan booklet “Understanding anal cancer” which may help to explain further around what you might experience. We also have our nurses on the Support Line who are here if you have any questions. You can reach our teams on the Support Line over emaillive webchat or by calling 0808 808 00 00. Our Support Line is open 8am – 8pm 7 days a week.

“I'm pretty new to all this, but really grateful to people like you (and those that have replied) for speaking out so openly in this forum, as a lot of the 'technicalities' of these treatments are not easy topics to discuss with  people who've not been through it.”

Community member, ‘Anal cancer’ group

Anal cancer and treatment can cause different symptoms and side effects, which you can find out more about on our website. One member reached out to talk to the group around their experiences of vaginal discharge. Other members let them know they’d experienced this too, and talked about what had helped them.

We’d always recommend contacting your medical team, GP or NHS 111 if you're experiencing new or changing symptoms. Many members also find it helpful alongside this, to talk openly around managing symptoms with others who have a similar diagnosis.  If you’d like to hear how other members manage something you or your loved one are struggling with, why not reach out in the ‘Anal cancer’ group?

Describing what’s happening for you can sometimes be difficult, and this is another way the ‘Anal cancer’ group help each other. One member wasn’t sure how to describe their pain:

“I've been finding it hard to describe the pain I am  experiencing, as a lot of it feel like 'new types' of pain, different to what I've experienced at other times. I'd be interested to know if others have found good ways to describe pain, or know of any resources that give these types of pain more 'medical' labels to help us communicate our experiences?”

Community member, ‘Anal cancer’ group

Other members reassured them that what they described sounded similar to what they were going through, and they understood what the member meant. It's important to keep your medical team and GP informed around what you're experiencing. Talking to other members might help you to describe how you feel. 

Cancer can affect all areas of your life, including your work, family and social life. Members in the ‘Anal cancer’ group are at all different stages of their experience, and stages in their lives.

“I’m definitely concerned about day to day living at work.  I work onboard trains and the thought of fighting someone for a toilet when I get caught short is fearing me with dread! I’ve bought myself a Radar key to help at stations! You can buy a list of where they are in the country, so great if you’re driving.”

Community member, ‘Anal cancer’ group

Some members in the ‘Anal cancer’ group had a conversation around how they navigate needing the toilet when they’re in public and at work. One member talked about how they have gotten a radar key to help. Macmillan have lots of tips on our website around accessing public toilets. This includes the website Toilet Map which shows all the public toilets in the UK.

Have you found it helpful to read through other members’ experiences? One of our members, Willo, has documented her experiences across 35 years following her anal cancer diagnosis in 1986. The series is on Community News, started with her first volume about her diagnosis while she was living in Zambia.

If you or a loved one are affected by a form of anal cancer, why not reach out in a forum in the group? You can join a group by clicking “Join” under “Group tools” when you’re on the main page for a group. You can then write a new post by clicking “+New” or “+” next to the group title. You can also click on other members’ discussions by scrolling down on the main page, and click “reply” underneath other posts to join the conversation. The group is also here if you would just like to read through posts and find support.

“I found this forum this morning; still reading at 2.30pm!”

Community member, ‘Anal cancer’ group

The ‘Anal cancer’ group is a supportive and welcoming place to find support. Members talk about all aspects of their experiences, from managing side effects to how they navigate returning to work. What do you find most helpful about your group on the Online Community? Comment below to share the support you have found here on the site.

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Anonymous