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A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

It’s lonely in Limbo ...

Posted by

Hi all you wonderful people. I’ve been hanging out here on and off over the last couple of months. Gaining some reassurance from your posts and learning lots. I had a strange looking raised mole removed from just above my left ankle on Dec 12th. Then along came Christmas/ new year and I really hoped I’d just get a letter to say it was benign. The surgeons secretary rang yesterday to say I need further surgery and I have an appointment booked for next Friday to see him and discuss. 7 whole days to wait to see what it is I’m facing. I told a couple of people yesterday , but my husband gets frustrated and shouts that we should only worry when we have something to worry about. And doesn’t want to discuss it again until we know. I’ve told my daughter who lives away in London and I know she will worry , I worry that I’ve worried her. My son lives close by but I haven’t told him that I have to go back yet. It’s just a horrible place to be .. worrying , and not wanting to worry others. I have a busy working life and it will take my mind off it during the day. But it’s the rest of the time. How do you all cope with waiting and worry ? I have to still be hopeful that it’s just a simple cancer and I need a WLE. Although he did say before this area would need a skin graft if I had one. I’d done nothing about the mole for about 6 mths so that is really bothering me , as if it’s something more sinister I’ve ignored for too long. I can see a lot of you have been here. I’m grateful for any support , feels easier to off load to you all than those closest to me. 
thanks in advance. 

Posted by

Hi , I’m sorry to hear your in limbo and struggling, as you say when your busy it’s fine, but rest of the time is difficult. It’s a bit like giving up chocolate and sometimes that all you can think about the one thing you don’t want. It sounds like your husband is worried to and doesn’t want to talk about it and his coping strategy is to ignore it until you know more. That is a good place to be for your husband, but I can understand how frustrating that can be for you. My husband didn’t want to worry me by telling me what his worries were, but it made him seem a bit uncaring when I knew that wasn’t him so we had to have a good talk. It was different in a way for us as my diagnosis was when it had spread back in 2015, I find when I have a blip now I like to get his take on things but still find it helpful to get things out of my head hear. I took him with me to a melanoma patient conference so that I could rely on the fact that he was to worry it would be from the same info I had so we could have a meaningful worry chat and mutual positivity. 

I find like thinking about chocolate or the elephant in the room, it’s hard not to think about it, I have to acknowledge the worry and then as it were put it back in it’s box. The technique for me is to make a worry list (or post on here) some times a worry is a general feeling, which is hard to write down, sometimes it’s a specific thing which you can. When it’s a feeling, sometimes music helps to get the feeling out, and turn it into a specific that can be written down. When the things are written down, I find reading them back as a list means it can be quicker to acknowledge the worry and not dwell on them again, as often there’s nothing to add to the worry or subtract from it, it just has to be parked for that week until more info is gained. I don’t know if my method will help, I gained it from anxiety counselling. There’s quite a bit on the NHS site about coping and there’s a coping section (and talking section) in the Macmillan info and support section. I can’t do a link at the moment but if you need one I’ll come back later today to do one.

I hope you find some of us here can help as we know the uncertainty we’ve been through might be similar to yours. When I was on a drug that on average only worked for 9 months I used to focus on that someone here had been on it for 2 years. When I became no evidence of disease I felt I should stick around to be that fairy tale ending we want to aim for. When I then had a reoccurrence in a node it felt so disappointing to ruin the fairy tale, but I had also taken courage and information from those for whom things hadn’t gone so well, and had been able to adjust to a new normal and place for hope and positivity. Sometimes we have to remind ourselves of the now, now we are fine, positive things are still happening around us. I haven’t been successful with mindfulness as a breathing and colour focusing technique but I have a friend who swears by it, for me it gives me a silence to let the gremlins in, so I obviously haven’t practised it well enough. I hope you find your way of coping and that others will add to this how they cope in limbo. Coping with uncertainty is such a life skill that it’s sometimes much better to think about ways to cope than think about what it is we are trying to cope with. Sometimes though I find I have to explore what it is that I’m worrying about and remember it’s not happening now and I don’t want it to ruin my day. 

I hope I’ve made some sense, and if you have any questions just ask and feel free to click on my user name to see my profile to see where I’m coming from. To do your own profile just click on your user name, find the edit button, type and save it. 

A gentle virtual hug and sorry for wittering on. I’ll be thinking of you on Friday hoping all goes well.


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Posted by

Hi ajs2a

Sounds like your offending mole is in a similar place to mine - mine was on my lower left calf. Like you I’ve been told to expect a skin graft, but will know for sure next Tuesday as I have my pre-op with the surgeon.

As for your worry that you’d had it for 6 months, I hope it might be some comfort to hear that I had ignored mine too for at least 6 months, in fact so many months I can’t actually remember, and my melanoma has been staged at 1A.

Despite what the scaremongerers on google says, melanoma doesn’t always go on a rampant spreading mission in a few short weeks, so try not to worry.

I know waiting a week will feel like a month, but try to avoid google except for the trusted sites like this one and Cancer Research.

Happy to be a sounding block if you want to offload, like you I find it easier to talk freely on here than I do to family and friends.

Take care and hang in there!

Jane x

Posted by

 "Sometimes we have to remind ourselves of the now, now we are fine, positive things are still happening around us."

We should all do this a whole lot more!

Don't wait for your ship to come in, swim out and find it!

Posted by

Thankyou so much for taking the time for such a comprehensive reply , it has really touched me how kind a stranger can be , and what a difference you can make to my thinking. I deal with a lot of things in boxes , so that resonates with me. Writing things down and realising things are no different could also really help. I too am no good at meditation , or being quiet generally. I know my husband and I need to find a better way to talk about this , you’ve highlighted to me that we should at least understand the same issues. I doubt he’s researched as far as me and I know how bad some of the info sounds. Thankyou for the virtual hug it’s been gratefully received. You are right I am fine now and I shouldn’t let this ruin the good days. 

Posted by

Thankyou so much Jane , it does sound like its in a very similar place. He wasn’t sure if he’d be able to close it when it was removed but stitched up ok. Has healed nicely , gutted that will all be undone. It is really reassuring to hear how yours is staged and it has been there a while. 
It will feel like a month but hey , It’s nearly been a day already ! Thankyou for the sounding block offer , I may well be back this week. Likewise though I’m here now , Happy to listen along with all the wonderful people here when you need support. I’ve been completely overwhelmed by how such kindness can come from strangers. I hope Tuesday’s pre op goes well for you x