Melanoma

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

A big disappointed

Katybb
Posted by

I’ve got to have another biopsy tomorrow on a mole on my back. My dermatologist wasn’t particularly worried, and I’m not really, however I am getting increasingly irritated by how my friends and family don’t seem to give a shit. There were lots of noises made this spring, when I found the lump in my groin, about why I’d not told people what had been going on. It’s now all coming flooding back! Even though I’m currently have immunotherapy for stage 3 melanoma, there seems to be this overwhelming silence. And that is why I stopped bothering telling people.

I might know I’ll be fine whatever the outcome, but it would be really quite nice if anyone bothered to ask me how I’m feeling..!!

Kate

AlfieBulldog
Posted by

Hi Katybb firstly welcome to the group and good luck with the biopsy tomorrow, whatever the outcome I’m sure you will take it in your stride as you obviously did with the lump in your groin and the regular trips to hospital for the immuno. You are definitely going through it and from my experience a diagnosis as we have all on here had also effects family members and I am sure they are also feeling it too. Different people deal with things in different ways.

Have you tried talking to them about how you feel, it needn’t be an argument but maybe they don’t mention it because they don’t want to constantly remind you of it. I remember what used to really get on my nerves when I was first diagnosed...the old saying “oh you will be alright” and me thinking how the hell do you know, nobody knows and you know what I might not be alright ! I eventually spoke to my family about it and they understood. They certainly didn’t take it the wrong way.

Alternatively have you tried some sort of therapy with a psychologist ? I discounted this at first but eventually tried it and it made me feel better, just talking to someone who has the skills to understand and make you think of your own answers, someone who you can really open up to without recourse is sometimes a good option.

Good luck  to you and my advice would be to communicate and tell those you need the support format this trying time just how you feel, easier said than done but it’s a start.

KTatHome
Posted by

Hi , how weird it should say you’ve joined the group again ! I wanted to wish you luck for today’s removal, and say sorry you were not in a happy place yesterday, it sounded very unlike you. I will take a leaf if I may from your last sentence and ask.....how are you feeling, and hope that after expressing here how you felt it was enough to make you feel a bit better, and if not feel you can rant again, and keep on coming here to support others as you have been doing. 

KT 

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KTatHome
Posted by

Hi , like you I talked to my family, well my husband really he was being too brave faced when I needed to know he cared, which of course he did but didn’t want to show concern. I think your advice re communicating and telling them how you feel and what you need is good. My sister lives a few hours away so we communicate a lot by phone rather than in person and it’s very tempting to just say I’m fine when asked how I am when actually maybe I’m not fine but I just don’t want to talk about it, or think neither does she. It started to get me wound up when she would ask if it was treatment this week, I suspect in hindsight it might have been her way of raising the topic, but in me it sometimes made me think for goodness sake I’ve been on a 3 week regime for over 12 months, how do you not know know when I’m going to the hospital. I sent her an email of my hospital dates so she could be on the same page and perhaps ask how treatment went, or know I’m waiting for scan results and might be more tetchy than usual. There are friends I see weekly and for me I need to let then know I want a cancer free enjoyable time with them, or I need a blurt out session of what’s happening before I can move on to the cancer free zone. I suspect some of them have things going on themselves that they think twice before they trouble me with them as sometimes they feel I have enough on my plate but it’s important for me to feel friendship is two way and I want to help as well.

i have rambled enough I hope you are having a good day and that you continue to be a complete responder on dab and tram.  

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Katybb
Posted by

Thanks both. To be fair, there’s only been one girl at work who I’ve been able to talk to honestly throughout this, and possibly because she’s going through similar things with her Dad, and everything else anyone has said or gone has annoyed me, so I know it’s me really!! Another friend has phoned this morning and wished me luck so I’m over my strop today. ;-)

And thanks for asking I’m fine today! And no idea why it said I’d just joined, that puzzled me too!

Merry Christmas everyone Xxx

Kate

Sailor2
Posted by

Hi Katybb,

I'm going wish you luck as well, and a Merry Christmas. I already know how you are - you're over the strop!  LOL.

J

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

Katybb
Posted by

As the anaesthetic wears off I have an incredibly annoying itch right in the middle of my back just where I can’t reach! Lol - going with the red wine cure. X

Kate

Kin1
Posted by

Hi kattybb,

I am sorry to hear that you have been diagnosed with melanoma stage 3.

How are you feeling? It must be a lot for you to take in.

I hear you and feel very much the same.

I have not been diagnosed but I have been waiting for my biopsy result of a mole on my back for over 5 weeks.

I can't understand why it's taking so long. The wait is beginning to get to me, as I'm beginning to realise that it's not a case of, no news is good news.

When I have mentioned to some family and friends that I had a mole biopsy. They either don't get the implications or just brush it aside, as if to say, it's just a mole.

Internalising and agonising while waiting has been hard.

I can't imagine how hard it must be for you to actually be diagnosed and to feel so unsupported.

We are here for you.

Katybb
Posted by

Hi  

Thanks for the message - I’m okay most of the time, it’s been going on long enough now that I’ve got my head round it all (and as far as we know at the moment there’s nothing there to actively treat, we’re just hoping nothing new turns up). However I think it’s probably fair to say that I’ve dealt with most of it on my own. 
Friends’ reactions tend to be either as you’ve described - it’s just a mole - or they think Immunotherapy means chemo and I must be really ill and just not saying anything! It’s very frustrating. I think my way of dealing with it is to complete immerse myself in it as a new area of study and read every available paper I can find on Melanoma, Dermoscopy, Immunotherapy etc. I’m being somewhat obsessive if I’m honest, but it is time spent not directly worrying about myself if that makes sense. Not sure I’d recommend it as a coping method though!

I wasn’t particularly worried when I first had this latest biopsy, but I’m becoming increasingly so as the weeks pass by, so I completely understand how you’re feeling. 5-weeks is a long time, have you phoned to chase up those results yet? I was told to give them a ring if I’ve not heard anything after 4-weeks. 
For me, if it is another primary melanoma then I’m already on treatment, which takes some of the worry out of it, but this will be the start of that journey for you if it’s positive and I know how overwhelming that can feel at times. Please do come back if you need to ask questions or share worries. I’m particularly good at obsessing over details!

Best of luck. X

Kate

latchbrook
Posted by

Hi and welcome to the online community

Waiting for the results of biopsies is very hard and it's difficult to fear the worst as time passes. 

I know this is easier said than done but try not to read anything into the time it's taking to get your results. It took 6 weeks before I received my diagnosis so the length of time you've been waiting is, sadly, not unusual. I think a lot depends on how busy the path labs are in your area of the country. Don't forget, the results can just as easily be negative for melanoma as positive as it takes the same length of time to look at the biopsy whatever the outcome.

I noticed that you haven't 'joined' the group yet. Don't worry, you haven't done anything wrong but joining means that you can start your own discussions, if there's something you want to ask, and you can also get email notifications telling you when people have posted.

To join just go to the top of the page and click on 'join this group' and that's it. You might also like to pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.

Do make sure you come back and let us know the results of your biopsy.

I'll be keeping everything crossed for you.

x

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

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