Process of the unknowns

Hi Andy1983d502ab and a very warm welcome to the group which I hope you'll find is both an informative and supportive place to be.

Hi Andy,

I have to give you credit for reaching out to this forum as early as you have, I wish I had at the time but didn’t have the courage and had a real bad time dealing with it all.

I had exactly the same, Stage 1b. It was on my leg, and I was referred to a plastic surgeon on my diagnosis (after it had already been removed). I really struggled with all of this. In the past I often “googled” health stuff but purposely didn’t for this so my head just filled itself with all sorts. I should have asked for more support, or information, or importantly just reached out to this forum as you have. I have ginger hair and fair skin, enough said,
I had a wide excision via the plastic surgery team, something my wife and I now call my “shark bite” on my leg. And maybe this answers your question slightly, I have become strangely proud of my shark bite. It’s the physical measure of what I have been through and I have no issue showing anyone as a reminder to stay safe in the sun. But it took me a long time to get there (I am four years in). 

After my wider surgery I settled into the 3 monthly visits to my MacMillan supported nurse for ongoing checks of my scar, my lymph nodes, and my skin (whole body). I cannot tell you what these visits meant, and it was only then that I started to process it all and settle into the way of life post surgery. My nurse is amazing and has been consistent to me for three years. Earlier this year she uncovered something new, it was Basel cell carcinoma and I had it removed thanks to her work.

So in short, the NHS are amazing, MacMillan working along side them are also amazing, and fingers crossed you will get all the support you need along the way. 
The very best of wishes to you, stay in touch and speak up at any time 

Thank you for your reply

On my diagnosis i was ok but after my visit to the plastic surgeon that’s when it really hit home and I’ve been carrying an enormous sense of guilt to the people around me ever since. is this normal?

I know you can only deal with what’s put in front of you when it happens and whilst awaiting my SNLB and the potential outcomes from that, this is when my brain is going into overdrive and struggling to process everything! 

I think I went through very similar to what you are describing. I have a wife and two young children and my mind went into overdrive.

It was the visit to the plastic surgeon that also affected me. I wanted the surgery without question but maybe some people opt out of it so the surgeon spelled out all the risks of not having it.

The worst part for me (and I think others say the same) was the wait for the results to see whether it had spread to my lymph nodes. Horrendous and my heart would jump if I saw the postman, but forums like this are really helpful if you are feeling anxious for any reason.

Stay strong and best wishes 

I was diagnosed with  stage 1B melanoma (on my arm) last November. The waiting is definitely the worst part.

I found my Macmillan nurse a huge source of help, as she still is, and I remember her saying to me that the original melanoma had been cut out with clear margins.  I found that very reassuring.  It didn’t entirely stop me dreading the worst, but it made me realise that the chance of it having spread to the lymph nodes was maybe less than I was projecting.

I don’t know whether you find meditation helpful at all.  Not everybody does, but I’ve been using an app called Calm for many years now.  It contains all sorts of stuff - sleep stories, music, calming sounds, short meditations etc.  There are also strategies for dealing with specific emotions such as anxiety.  I found someone called Dr Julie Smith in there, and it might be worth googling her.  She’s a clinical psychologist who has some good CBT techniques for dealing with anxious thoughts and they’re quite simple.  I’m not sure whether I’m allowed to post links here, but I do have link to the specific strategies she suggested and which Calm allows me to share.  latchbrook .  Would that be OK?

Hope all goes well with your surgery.

Hi SilverAspen 

The Community Guidelines allow you to:

• Provide anecdotal accounts about alternative therapy use, as long as you do not make claims about their effects.
• Advocate the use of complementary therapies alongside conventional treatment.
• Make evidence-based claims about the effectiveness of complementary therapies in improving quality of life.

but you must not:

• Advocate the use of any alternative therapy or for using any complementary therapy as an alternative to conventional treatment;
• Advise anyone to ignore medical experts’ advice on the use of any treatment whatsoever.
• Promote any alternative therapy.
• Advertise any alternative or complementary therapy for commercial gain (commercial solicitation of any kind goes against our Community Guidelines).

It also says:

Please do not promote alternative therapies, or reproduce information from other sources unless they are quality assured and reputable.

If you're not sure whether your links are okay, you could reply, including the links, and I could then 'flag' it to the moderators who can decide whether the links are okay or not.

Alternatively, you could send an email to community@macmillan.org.uk, again including the links, and ask if they are okay to post.

Anne

Thanks for that Anne.  I’ would certainly never suggest anything as an alternative to conventional medicine.  This is a series of short videos which can help people to deal with anxious thinking.  They certainly helped me, but I appreciate that sharing a link could be deemed to be promoting it.  I’ll send the link by email, as you suggest and take it from there.   

I appreciate your help with this, as I don’t want to breach any guidelines.

That's probably the best idea as the community team can check the videos to see if they are ok 

Hi and thanks for your post

i am a bit puzzled as I was told I would be followed up for a year but you seem to have checks for 3 years? 
also do you have a macmillan nurse separate from the cancer nurse at the hospital? 
thank you 

I don’t know if it’s any help, but I had a WLE and an SLNB in December for a melanoma on my arm.  There was no evidence of spread, so I stay at Stage 1B and I have 3 monthly skin checks with a Specialist Dermatology nurse.  All being well, after 3 years, these will switch to 6 monthly for a further 2 years.  The Macmillan nurses are also attached to the Dermatology Department, but my contact with them has been more for advice and support.  I’m in North Wales, so I don’t know how other hospitals operate.  I guess it also depends on the grading of your melanoma.