A very warm welcome to the melanoma group!

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I know that you probably never imagined you would need to be part of this group but you have come to the right place to ask questions, share experiences and get support.

You'll find a wide range of experiences with melanoma amongst the members here so please feel free to ask any questions. 

There are people here who have had wide local excisions (WLE) and sentinel lymph node biopsies (SLNB) as well as people on adjuvant therapies suck as targeted therapy and immunotherapy.

If you haven't posted yet and want to ask a question just click on '+New' or '+' (depending on the device you're using), which you'll see near the top of the page, or reply to this post. 

Another way of looking for information is to use the search bar at the top of the page to search for old threads covering what you're looking for.

The online community is here to give support so please join in with posts if you have experience of something mentioned or are in a similar position. Don't feel that just because someone has replied to a post you can't join in. The more shared experiences the better.

Sometimes you might not have any experience with what is being asked about but you might feel that that you know or appreciate what the poster is going through so a kind reply and a gentle, virtual hug is always appreciated.

This post is going to be a 'sticky' so that it will remain on the first page of the discussions list and can be easily found. As you'll have seen I've added a few links to information about melanoma but if there's anything else you'd like adding just let me know.

Completing your profile with something about your journey so far is really helpful. It means you don't have to keep repeating yourself and others know something about your cancer when trying to find people with a similar diagnosis, or before replying. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Thank you very much for replying, all suggestions are really appreciated.
    I am very sorry for the loss of your daughter. I cannot even contemplate how hard this must be for you and your family. My thoughts are with you all. 

  • I'm so sorry to have hurt you in any way.  I was replying to ALW who from what I saw had posted yesterday.  I certainly have no wish to offend you.  I can only  imagine your pain and I feel terrible that you've been waiting so long for a reply.  I'm sorry you've been let down by this site too.  I always reply to anyone I can if a day has passed even if it's just to say hello and send love.   Hearts️

  • Thank you.  It was a shock hearing from someone after all this time.  I am really struggling trying to make sense of losing my daughter.  She has left two young children who are missing their mom so much.   Its been hard and there is not an awful lot of support.  All I get is links on emails.  I feel so alone. I wish I had someone in same situation to talk to 

  • Hi 

    I hope you don't mind me joining in the conversation that you've been having with Allotment lover but firstly can I offer my condolences on the death of your daughter. I can't imagine what you must be going through and hope I can point you in the direction of the support that Macmillan offer.

    You would be welcome to join the bereaved family and friends group here on the online community which would enable you to connect with others who have lost a family member or friend to cancer, to share your feelings and give and receive support. If this is something which you'd like to do clicking on the link I've created will take you straight there.

    If you feel that talking to someone would be helpful then you could give the Macmillan Support Line a call on 0808 808 0000.  It's free to call and there's someone available every day from 8am to 9pm.

    I was very concerned to read that you said to Allotment lover that
    "this message is rather late as my daughter passed away November 2021. Rather disappointed that its taken this long to get a response from anyone"

    Part of my role as the Community Champion for this group is to make sure that no post gets missed so I've looked back at your activity. I can only find one post from you in this group (here) where I can see that you and KTatHome had a conversation and wondered if perhaps you had typed out a post which didn't get posted to the group due to a technical issue as there are no unanswered posts. 

    I would hate to think that you found the group unsupportive so please don't hesitate to reply to me if I can help you further.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Sunbeam70 Hearts️ I'm not sure how you've received either mine or ALW's posts. But I'm glad as whatever happened it's flagged you back to here and it sounds like you are in need of listening ears hon and some kind support.  I'm really glad to also see that a Community Champion (Latchbrook) has picked up on our posts too.   I hope you can try again on here and follow her advice to receive the much needed love and care you deserve.

    Sunbeam70 my heart goes out to you and your whole family at what must be a desolate time for all.  I am sending you all my love and a huge hug too.  Xxx

  • Sue, we got the results today, my daughter has a melanoma, feel like we’ve been hit by a bus, but will take your advice. I will also start a separate thread. 
    Hope you have been able to reach out to others and get the support you need. Best wishes, ALW xx 

    • I am so sorry to hear your  news.  In my journey I have seen many people who have overcome Melanoma, my advice would be for you to make yourself known with secretaries of consultants, I got to know many of them and each and everyone was so helpful in sorting out appointments etc.  Progress has been made since my daughter was diagnosed.  After my daughter had her first mole remove she was discharged and had no check ups.  Please get regular check ups. If I can be of any help to you please keep in touch.   My heart goes out to you, but if I can help in any way please let me know.  Much love to you and your family
    • Sue
  • Hello ALW, I'm sorry to hear your daughter's news isn't good.  There's no right words for me to say except when the initial shock is over and you probably attend appts for tests/staging/any treatments if necessary please remember to keep hope in your heart.  The immunotherapy treatment that some people need are producing really positive results in even late staged disease.  

    I have a 21 year old daughter and I can only imagine how I'd feel if it were her diagnosed (she is very freckley too so at risk).

    Sending you a huge virtual huge and love  xxx

  • Thank you so much Allotment lover. 

    We are certainly in the shock phase. Hard to believe, but we are working with the hospital on dates for next steps (1b 1.1mm so WLE & SLNB). Trying not to overthink it but it is very hard.

    The hospital want to explore genetics too as they do not believe this is UV damage (her profile does not suggest this), so the rest of the family need to be vigilant Frowning2️I

    Our daughter has gone to school, in contrast my husband and I didn’t sleep much and have barely eaten. I’m hoping each day will get a little better and we will be strong for her. 

  • Hello ALW,

    How is everything going?

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