Hello and welcome!
emilyrose
Posts: 51 Community Admin
Hi there! Welcome to your new Community forum, and thanks so much for joining us!
We've posted some discussions across our 4 different categories to help you get started, but feel free to start your own - this is your space and we want you to shape it into something that works for you
If there's anything we can do to help you feel more at home, let us know! Drop one of our admins (Hessom and Emily) a message, or email us at [email protected]
First of all, let's start with some introductions - if you'd like to say hello, try posting here with a little bit about yourself and why you've joined our community.
Just remember to keep things like your surname, email address and other personal details private - keeping things a bit anonymous helps us to keep this space safe for all our users
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That means I spend a lot of my time on our Facebook and Twitter accounts, chatting with people like yourself, researching and writing for our blog, and sometimes doing fun things like meeting our members for interviews or photoshoots. And now I spend some time here, helping you get the most out of your new Community forum.
A bit about me when I'm not at Live Better With - I live in London 🌇, have two elderly rescue cats 🐾, and I'm currently teaching myself to draw. 🎨
We've built this forum specifically for the Live Better With Cancer community, so it's brand new to me as well as you - if you have any questions or trouble figuring out how it works, just drop me a message and we can figure it out together.
Looking forward to getting to know you all!
- Emily
I also work at Live Better With, but on the Digital Product Team. I work alongside Emily, as well as our engineers, marketing and the rest of the company to help build products that our users love!
I'm really interested in understanding how the Community helps you, as well as what we can maybe do better, to make this the best online Community to help you and your loved ones. As part of this, I've already had the pleasure of talking with some of our Community members to get feedback on what you want, this is the favourite part of my job and so I'm excited to talk with our members even more!
Outside of work, I love to travel when I can, and in my spare time I like to rock climb (and I'm now learning to make woodspoons
We've got loads of exciting ideas in the pipeline for this Community and I can't wait to share them with you! If you ever want to suggest something or even find a problem with the Community we can fix, just drop me a private message
- Hessom
Once you have come through something like this you feel empowered and like to chat to like minded folk.
i lead a full life even though I have bad neuropathy but ignore it.
positive attitude.
😊😊
My name's Tamara and I'm the Founder and CEO of Live Better With. I started Live Better With almost 4 years ago to try and make day-to-day life a little bit better for people living with long-term conditions such as cancer. Having worked in healthcare for 10 years, and having seen my loved ones go through long periods of illnesses, I got more and more frustrated that there are so many tips, ideas, services, products, and more that could help bring relief from symptoms and side effects - but people don't know about them. That's just so wrong! Everyone going through something like this should know every single thing that can help them, from people who understand.
We've built this community forum as a place to help solve that. Here you'll find a family of people who get what you're going through, from whom you can get some new tips, tell your story and listen to theirs, and feel like you belong.
So a huge warm welcome and look forward to getting to know you all.
Love, Tamara x
PS Please feel free to let me know any feedback at any time on what would make this forum even better for you. My email is [email protected] Or if you just want to say hello
I signed up yesterday, just call me sunshine daff ! why? I love seeing the sunshine,it makes a difference to my day, and I love flowers and gardening.
I have survived breast cancer, but am also the first in my family to survive cancer, I lost my sister, dad and mum to this despicable disease.
My life has changed, but hey, I'm still here, living every day, and thankful for it.
Looking forward to chatting with others.
I am well and enjoying an active retirement.
best wishes
Barbara😊
My name is Robert
I have an aggressive Prostate cancer which has spread to the nearby tissues. I cannot be cured but I have had radiotherapy and as the cancer feeds on testosterone, I am now receiving androgen deprivation therapy which has removed all of the testosterone from my body. Fortunately, this treatment is holding the cancer at bay so far, though I have to manage physical and emotional issues arising from the absence of testosterone.
Now retired, I use my spare time playing and writing music on my electronic keyboards. No hits yet! i have also been studying Spanish for 4 years now with mixed results. My lovely wife and I also love walking and travelling.
I found the 'Living Better With Cancer' website several months ago and I have been posting on their Facebook site since then. It is a wonderful mutually supportive group and understanding, support and hugs are freely available from the members, many of whom are facing far greater hurdles than I am.
There do not seem to be many men who post, but cancer is cancer and I feel very welcome and supported.and hope that going forward, more men will get involved and enjoy the support of the group.
I think this new Community initiative/expansion is very exciting and look forward to chatting to you all.
Rob
It's really nice to hear that you're still so active, both in the activities you enjoy with your wife but also pursuing your own personal interests and hobbies, whilst also managing the complexities and challenges of undergoing treatment! Do you feel this has helped you with your diagnosis and treatment in general?
We want this Community to be an active and engaging site, and built it because we are so inspired by the members of our Facebook group, and we know that communities are a valuable and helpful resource, so thank you for joining
We're actively looking at how we can help more men on their cancer journey, whether as a patient or someone that is helping their loved one through cancer. From research, we know that, in general, men are more likely to seek help or assistance online if there's some level of anonymity, and so we believe this Community is one way we can help them more easily. If you have any ideas you'd like to share please don't hesitate to contact us (you can private message me directly, send us an email at [email protected] or even start a discussion right here on the Community!)
The treatment I receive causes extreme tiredness and even though I sleep pretty well, I still wake up in the morning feeling anything but fresh.
I try to fight back by getting up at 7.30am every morning and getting on with the day. I find that going for a long walk freshens me up - indeed any kind of exercise does that.
I am lucky to have my music as when I am sitting at the keyboard, or just listening, I always feel happy and relaxed. So yes, I am convinced that having interests and hobbies will put the cancer and its effects to one side for a while.
Unfortunately, we men do tend to keep things under wraps. I do not, and I actively press friends and acquaintances to have regular check ups. If I had done so myself, and my cancer had been caught earlier, I might have been cured.
Men do not seem to like talking about their fears and vulnerabilities and I guess you are right, that offering anonymity is a good start. It is getting them involved in the first place that's the problem though. Perhaps, we need to get their wives and girl friends to nag them a bit.
I once wrote about it in the 'letters to' page of the local newspaper and it started a little thread which grew. Obviously, people need to know the organization exists in the first place.
I found 'Living With' by googling. My friends and family were great, but I needed to join a group of people who understood what it was like to experience the disease and I was delighted to find you.
Cheers
Rob
Sorry to hear about your diagnosis. You will find that you are amongst friends on this site and many of the ladies will know what you are going through and will be there for you.
Welcome to the community. Look forward to chatting with you, whenever you feel like it. I have come through the other side of breast cancer, but still feel like a newbie in remission. Even though this is a new forum, you will find lots of support here. Hope you were able to get some rest last night. x
Why not try starting a new discussion for tips for chemo? Let me know if want any help with this and I'll happily send you a private message.
We have a guide on our website you might find helpful (here) hope this helps, although I'm sure the Community has lots more great information.
I just commented the same to @sasha_ruby1219 but this guide might be helpful for you too! You can check out our chemotherapy guide here but you're also free to start a new discussion on this topic! (Let me know if you want any help with this
We've also got a specific discussion around lung cancer here as part of Lung Cancer Awareness Month, there may be some helpful information and definitely some helpful folk there too
I’m Jackie and was diagnosed with breast cancer in December 2013. I wanted exactly this kind of place to exist when I was first diagnosed but just couldn’t find anything online that was like this: the right mix for me of being informative but as upbeat and positive as possible. I’m thus delighted Live Better With and its community has since been established and am keen to support it where I can.
I was asked if I’d take up a roll of, ‘Cancer Expert’ and while I’m not sure I’m really expert in anything (!) I do have some insight into the world of cancer through my own experiences and through writing my blog and subsequent book: Tea & Chemo. I’m happy to help where I can. I will leave you with this for now: if you’ve just been diagnosed, hang on in there! The waiting and the not-knowing are, in my humble opinion, the worst. Once you get a treatment plan and get started on your treatments, it can all feel slightly less terrifying
Big hugs to all x
I am new to this sight hence learning how to navigate myself around it to best get support. I have undergone surgery for colon resection with ending up having to live with a colosomy☹️. I had chemo and radiation before surgery and then chemo after surgery. Then I had a liver resection as I had a spot. Now that that is all done I am not going for any more chemo as I am contending with neuropathy that has sprung up on me a few months after I ended my chemotherapy. So not sure if or when this will go away. I am clear right now and will be going for blood tests every three months with another CT scan down the road. Anyhow... feeling a little left behind with my healthcare team now that it’s await and see...so thought I would reach out to cyberspace friends😁
Also, let me know if you'd like a hand with understanding how to navigate these forums! We've put all discussions in a single page, under the discussions link at the top, but we've also got specific categories, so you can create you discussion (using the New Discussion button) and assign it to a category, it'll still show up in the discussions tab too so it's easy for others to find and help with