1A Melanoma

Hello KKat23, I found doing a post so daunting it took me 9 months of just reading !  so congratulations on doing your first post. I’m hoping you are feeling more centred after your brain dump, you know where your brain wants to be but recognise it hasn’t got there yet. What you didn’t mention was the uncertainty no matter how small of a recurrence which is why sometimes it’s difficult to move through to feeling ok. Talking with others who get it can help as they understand the positive ness of its gone and may never come back with the lowness of having to be careful in the future of the sun, and of spotting any future signs, and of how much worse it could have been, all of which you’ve identified and is very very normal. 

I did not have a primary found on my skin so I haven’t had exactly the same experience, but have had the moving from appreciating the worst, dealing with the uncertainties and working on a positive mind set between appointments. I’m not cancer free but mainly it’s the mind games that seem much worse than anything else.

Hi KT,

Thanks for your response.  I think the brain dump helped me realise I need to reach out for more support, which I have done - I'm not good at asking for help. 

The uncertainty of the future is there in the back of my mind as I am covered in moles, literally. Full body mole mapping is booked so I will have photographs to compare mole change to, which will hopefully stop the panic setting in when I see a mole that I don't think I've noticed before (or don't/can't see regularly!).  I think it's still the shock, denial and disbelief of receiving a diagnosis, despite the scars and current hole in my leg.

Thank you for the reassurance, it's really appreciated.

Your experience and your positivity and determination through it (from what I read in your profile) is admirable and I wish you all the best with your next steps.

Kat x

Hi Kat. I’m also recently diagnosed with stage 1A and waiting for my WLE next month. I know exactly how you feel and this site is brilliant for letting steam off or fears about the unknown. everyone is so lovely and you’ll always find someone who can help with advice or support. I felt overwhelmed at the beginning of my diagnosis and even though family and friends tried to help by saying it’s gone you’ve nothing to worry about I still felt quite alone with my thoughts. I had a good chat with my skin cancer nurse yesterday and they put some of my fears to bed about recurrence etc. I felt better talking to her than anyone else. I believe you can also get counselling from Macmillan if you need it. Some of the time I feel ok and extremely grateful that it was caught so early but then I feel lonely and consumed by my thoughts. It’s tough! Take care of yourself and things will get easier. I’m hoping at some point melanoma won’t be the only thing my brain thinks about.  x 

Hi Kaussie,

Thanks for your message and your kindness.  I agree this online community is a wonderful resource to   ensure you don't feel so alone and I've been reading through many threads on here and hearing similar emotions despite different stages of diagnosis.

I think I have been in denial for the last few months (I'm far too good distracting myself), going through the motions and not addressing the issues, until they overflowed and my work suggested seeing my GP, which resulted in me being signed off for 2 weeks (over WLE which was has also been good).  This has in turn led me to have time to think, to reach out, to find this community, to book hospital and blood appointments and I have a call with BUPA this afternoon so we'll see what comes from that.  

I hope your WLE appointment goes well and your recovery is good.  Despite increased restrictions around movement from last time  (I think because it's on my anterior thigh), I've found this easier to manage that the 4 wounds I had previously.  Maybe I know what to expect and how to move without causing pain and discomfort but I'm also only on day 5 after surgery! 

xx

Hi. I’m glad you’ve reached out to this community. I really do think it helps when you’ve got someone else’s input who’s been/going through the same thing or similar. I had a meltdown when I was waiting for my results and ended up speaking with my gp. I’m really not looking forward to the next surgery as it’s on my lower leg. The biopsy wasn’t too bad to be fair so I’m praying the WLE won’t be much different (fingers crossed).  I hope all goes well for you and we’re all hear if you need to vent xx 

Hey - I'm glad too.  I feel less alone in this as well as listened to and understood, which as much as friends and family try, they struggle with.  I've now got 6 weeks of counselling coming up to support me with the emotion rollercoaster so that makes me feel more hopeful.

For me, the WLE wasn't much different but I guess the thigh has more 'flesh' to work with when she 'laced me up like a corset' (her words!) compared to the lower leg.  The surgical teams are amazing and the human body is incredible so I'm hoping you have another good experience. xx

Hey. Thank you for your view of the WLE. That’s what I love about this site. Family keep telling me it’ll be fine but people that have been through it are the ones that really know. Good luck with the counselling sessions and please stay in touch. I’m starting CBT sessions in February once I’m over my op xx 

Hi KKat23,

I have been diagnosed with 1b melanoma in August this year, you can see my journey in my profile.

Totally get how you feel and want to say you are not alone in this. Glad you found this amazing community. 

Personally, I don't put too much emphasis to  "being cancer free, cancer survivor". I studied biomedicine and maybe that's why I see it as a process (cell mutation) that occurs for all of us all the time. At some point in our life we all have or will have cancer cells, for some of us they get removed quickly by our defense cells, for some they stay and continue to multiply. What I am trying to say is, seeing it as a biological process makes it easier to deal with it, when it comes to operations, treatments, checks etc for me. 

In terms of emotions regarding my health, life quality and fear from future were things I never had to go though before so was quite a shock to absorb. I have been having talking therapy and found it very helpful to understand how I feel. I Try to take a step at a time, to be nice to myself, not to dwell into bad possibilities and focus what I know at the given moment regarding my diagnosis. Most importantly try to arrange life as I like it to be, that's what helped me most. If my friend says you are lucky to have 1b only, I say "yes I am but also I am worried, scared, grateful" . I know that they are trying to be nice but, I almost feel ppl belittle my experience and I don't accept that. I don't know if what I am saying makes sense but the point I am trying to make is that its about you and no one else. 

In a more practical note, did they do the mapping after your WLE or at the first appointment? I got checked by consultants for my other moles but no pics taken yet. 

Take care

Kaussie - Will do! Good luck with your op in the New Year.  Enjoy your Christmas xx

Hi Elmyra,

Thanks for your email and sharing your experiences of therapy.  I agree the shock is the hardest to overcome but all the other emotions hit you at the same time which all deserve some processing time as well. I think when I was 'labelling' myself, I was trying to find a way to process the diagnosis and make it more real because part of me realised that I wasn't. 

I think you're right, friends (and family) they don't know what to say but want to be positive and it does end up feel like they are belittling my experience and moving on to happier things.  I don't know if I'm strong enough to say what you say (in person) just yet - just sharing it in person results in tears.  I hope I will be soon!

Offered mapping in diagnosis appointment, SCN did the referral but it was up to me to book as it's at a different hospital.  So it will be after Christmas once the dressing has come off my WLE.  I went it about one mole, she asked if I would be open to full body check to which I 100% agreed to and ended up having 4 removed.  I have over 50/100 moles and I live alone so it's hard for me to check all of mine which is why they put me forward.  My dad and sister have private healthcare and they had mole mapping done years ago.  My sister has had moles removed but all mild and has never talked with me about the emotional side of it and Dad's had 2 Stage 1 melanomas but is very practical about it and a little emotionally dismissive because I'm fine now and 1As are common.

If you feel you can't check them all yourself, I would definitely ask your SCN.  Good luck xx