Notice of group updates

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Hello everyone,

I’m Rachel from the Community team, I hope you don’t mind me posting here today.

I’m here to let you know that we will be making some changes to the group next week. Following feedback received from the Community, we are developing the group to have three sections: 

  • New here, say hello
  • Diagnosis and treatment
  • General chat 

The sections have been designed to make the group more welcoming and help members find the information and support they’re looking for.

Please don’t worry, as you will still be able to start and reply to discussions whilst the changes are being made.                                                                                                                                                                                                                                          
If you have any questions or comments about the new group structure, we would love to hear from you by email at community@macmillan.org.uk or you can ask for help using the site in the Help group here.

Thank you for your support in developing the Community so it can be the best possible place for peer-to-peer cancer support.

Kindest Regards, 

Rachel
Macmillan's Community team

  • Hello! A slight change, perhaps to the thread titles which would allow the original poster's username to appear (as well as the most recent poster). It would greatly aid in searching for a particular thread or member. Thank you!

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

  • Hi

    Thank you for your comment, I hope you don’t mind me responding today, my name is Rachel and I work as part of the Community team here at Macmillan. I firstly just want to thank you for your feedback, here on the Community team we are always looking to hear from our members about how they are finding the site so we can make the Community the best place it can be.  

    I have logged your feedback with our dedicated Feedback Team, and I hope you don’t mind but I have also included some information below on ways you can see the original poster of a thread, as well as the member who has most recently commented, when looking through the site.

    As the site is currently laid out, when looking at a list of threads, you can see the username of the last person to comment in that thread - as below:

     Screenshot of a thread in the Community with an arrow pointing to where you can see the username of the latest member to post.

    If there are no responses to a thread yet, you will be able to see the username of the member who created the thread here, for example below:

    Screenshot of a thread in the Community with an arrow pointing to where you can see the username of the member who started the thread..

    If you click into any thread, you will also be able to see the original post and the username of the poster who started the thread pinned to the top of each page, no matter how many pages of comments there are.

    This way you can actually see the latest post and the first post on the same page.

    I also wanted to let you know that if you are wanting to search for a particular member or thread, you can do so by searching the discussion group.

    If you were wanting to search for a thread in the T- Cell lymphomas group, you will first need to go to the group’s main page, then type the name of the thread you are searching for in the search bar at the top of the page. You will then see a list of all the threads in this group which match your search, as shown below:

    Screenshot showing the search bar and how to type a search request in to generate results.

    You can then simply click on the thread you would like to read.

    I hope that the above information is useful but if you have any questions, or ever need any support, please don’t hesitate to get back in touch by emailing at community@macmillan.org.uk.

    If you would like to give more feedback about the layout of the Community, or how you find using the site, you can also fill in our online feedback form by clicking here.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • Thank you! Oh, it is so difficult to keep us happy! I did know about the last poster (OP if no replies), but was hoping that the along with the latest poster, the original poster might also appear. Just a thought.

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

  • Hi

    Thank you so much for getting back to me, apologies that I didn’t pick up your message until now. I am glad however, that the information in my previous response was useful.

    I also want to thank you again for your feedback about seeing both the latest poster and original poster on the thread list. It has been sent to our dedicated Feedback team and if you have any further feedback about the site, please don’t hesitate to get in touch with us by emailing community@macmillan.org.uk.

    You can also speak to the Feedback Team directly by filling in this online form.

    Here on the Community team we really appreciate when our members take the time to get in touch to share their feedback. We want the Community to be the best it can be for our members, so we always welcome any feedback.

    I hope the above information is useful but if you have any questions, or ever need any support, please don’t hesitate to get in touch.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • Rachel, Thank you ever so much. Do not want to seem like a know-it-all, but I was a mod on a cancer forum that was euthanised for not being sufficiently profitable. With 60,000 registered members! It is a challenge getting used to such a wide variety of forum software, but we resilient humans are capable!

    Peace and good.

    James

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

  • Hi James,

    You’re more than welcome, we encourage all feedback and are grateful that you took the time to let us know your concerns and ideas for improvements. Our members are at the heart of everything we do, so hearing from you is very important to us.

    I’m sorry to hear that the cancer support forum you previously worked on was closed down James. I am glad that you have found us here on the Community however, and I hope you find the site to be a place of comfort and kindness.

    If you have any further feedback you would like to raise, or if there is ever anything myself of the team can do to support you – please don’t hesitate to get in touch.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • For the record, my journey has been remarkably like Highlander's, both of is having T-Cell Lymphomas. I live in the states and for the past several years have been patient advocate and speaker for the T-Cell Leukemia Lymphoma foundation, which was established by my hematologist. It has been a remarkable journey!

    Peace and good,

    James 

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.