Melanoma

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

Waving Hello

Mummybear2
Posted by

Good morning campers,

I found this group in the wee small hours and decided to put myself out there and join, so here goes...

I’m a 31 year old mummybear to two wonderful boys. A 2.9 year old and a 17 week old. I had a mole on my tummy that had ‘stretched’ during the latter stages of pregnancy and after birth, when my tummy was back to normal (well the normal version of an empty sack of spuds) it was raised and darker. I got it removed and on the 5th of December was diagnosed with a melanoma  It was 1.9mm deep, margins were clear. I had further WLE on the 21st December and removal of three lymph nodes, one auxiliary and two groin. Currently in the dreaded wait to find out the results of those nodes. 

So a question, how do you let go of what you cannot change? Like not seeing about it earlier. I’m carrying this I should have known guilt, what if it’s spread and it’s my fault guilt which I can’t shake but also know I can’t change either. I’m jusy going round and round.

is there anyone else her who had melanoma during pregnancy or shortly after?! Again, my mind is driving me mad with you had increased growth hormones, increased blood flow etc which I’m all putting to be negatives in the ‘likelihood of spread’ in my head. 

So maybe some help on positive thinking or mindfulness or coping techniques are what I actually need. 

Anyway, hi ang congratilations if you got to the end of my ramblings xx

Henryhound
Posted by

Welcome MB2

pleased you have found this group, you will find it informative and comforting as we all share the same diagnosis. The way you describe your feelings is to be expected. A roller coaster of emotions, fear, anxiety, depression etc 

like yourself I had a mole on my tummy, it began to itch, and became ulcerated. I did go to the gp , and was referred to the hospital within the 2 week nhs urgent appointment system . I think sometimes I should have gone a bit earlier to the gp. 

This was last August, I had the biopsy done in September and it was a melanoma stage 2 ( 2.9 mm) . I opted for the SLNB and wle which happened on Dec 10th. I had the nodes taken from both sides of the groin. I was in pain for first few days, now it’s okay and healing . I was contacted by my cancer nurse about 10 days later who had the results and they have not spread. My follow up with the hospital is later this month. You could ask your cancer nurse as they may have your results? 

I have good days and then quite down days, I am looking forward to getting back to work as can then focus. I was given 2 weeks sick note by hospital , but gp extended it until 12 th January so just over a month off. 

Dont beat yourself up with guilt, you have acted on it and now it’s being sorted. I probably should have acted earlier and should have had a yearly mole check which I didn’t. I have to now deal with now and the future, think positive , talk to family and your cancer nurse , use the McMillan facilities at your local hospital. Be careful with Dr Google, as that can prove worrying, if you look at the nhs site/ McMillan etc they are more informative . 

Sending you a virtual hug, and fingers crossed ur results are good 

best wishes x

Mummybear2
Posted by

Thank you for your reply henryhound and wonderful news on your results. 

I’ve found the recovery ok so far although I was seriously sick after the GA. I’m having pains in my thighs and bingo wing which is weird though as not near the incision site at all. 

You are right, I could probably phone and get the results but to be honest I’m absolutely terrified to, and at the moment the state of ignorance seems like the better option. I know I can’t go on like that though and will have to face it at some point. 

Im on maternity leave currently, so luckily have the smalls to keep my mind occupied.

hope your follow up goes well xx

LadyC
Posted by

Hi Mummybear2

How unlucky that your primary was in the middle so you got the double whammy of SLNBs!

I know what you mean about the odd pain locations - my SLNB was in my groin and I had no pain in the incision with the bulk of my pain being down the inner thigh, particularly mid-thigh. Very tight too, feels like it's connected with a bit of string that's too short! I've been told this is totally normal by my SCNS.

On the positive thinking subject, what worked for me was to focus mainly on the right here and now rather what might happen because whatever I did in the time between surgery and results wouldn't have any influence. This didn't mean blocking out negative thoughts, but more acknowledging them (e.g I feel worried about the future), reacting to them (e.g. have a cry), then moving on (e.g. put a fun movie on etc.) and definitely not ruminating. Ruminating is like going down the bad internet search rabbit hole - it wastes loads of time and it's unlikely you'll find what you're looking for!

Hope this might be able to help you and I wish you all the best for the outcome you want on your results.

x

Mummybear2
Posted by

Yep, it was perfectly centred on my abdomen and all three nodes were lit up like Christmas by 20 mins on the nuclear medicine scan so I ended up with the job lot of left and right groins and left Auxiliary. Figured at least I got my moneys worth

It’s only my left thigh that seems to be giving me some grief, it almost feels bruised on the muscle. I’ve no idea really, it’s got to be linked somehow but I will also speak to my SCN and see if he has any answers. 

I think I definitely need to learn to live in the here and now regardless of the results outcome, how much time do we all spend sweating the small and big stuff, when often we can’t change it anyway. I need to make every second count with my two small humans and this is what I intend to do. Xx

latchbrook
Posted by

When are your results due back ?

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

What is a Community Champion?

Mummybear2
Posted by

I had my surgery on the 21st December so I suspect they are probably already back but I’m too frightened to phone. I know I need to man up and face the fight but the oblivious bubble seems to be a safer place x

latchbrook
Posted by

It took 2 weeks for my results to be back and I was sent an appointment . At the appointment the plastic surgeon examined my wounds and gave me the results. I would have thought that you would have an appointment rather than be expected to phone for the results unless you were told differently at the time of your ops.

With Christmas and New Year getting in the way they may not be back yet.

x

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

What is a Community Champion?

latchbrook
Posted by

Hi

I was wondering how you were and if you'd had the results back from your WLE and SLNB. 

x

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

What is a Community Champion?

Mummybear2
Posted by

Hi latchbrook.

thanks for your message. Yes, I’ve had the results back and both WLE and all three SLN were negative for disease :) I know this is good news but I have really been struggling with the way I feel. Instead of elation I just feel flat and can’t get the thought of reoccurance out of my head. Is this normal? Did you feel like this too?

mummy x

latchbrook
Posted by

That's great news !

It's perfectly normal to worry about recurrence though. There's no magic answer as to how to deal with this but I think you'll find it easier to manage as time goes on. 

The thing to remember is to do your monthly checks and, if you're worried about anything to do with your skin, get in touch with SCNS.

You'll be examined every 3 months for 3 years and then every 6 months for another 2 years so if anything was to develop it will be picked up early. 

x

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

What is a Community Champion?

projext
Posted by

Hi,

In this club we all joined without being asked, you have to take every bit of positive news as a blessing.

Elation probably isn't the right word, you are really just celebrating the fact that you are back to where you were before all this started.

No one can tell you how to feel but I as we stand now, you've had the best results that were available to you.  You cannot ask for more than that.

The thoughts of occurrence are natural but they will fade as life comes back and the little worries it brings take over...

I'm not educated enough to be big on quotes but one that sticks with me is:

"“I've had a lot of worries in my life, most of which never happened.” Mark Twain

You are on the radar now to be checked, you will be vigilant for anything in the future.  Take the baton and run with it x

I wish you all the best......

LadyC
Posted by

Hi Mummybear2

Great news on the clear WLE and SLNB, although I do understand your apprehension regarding recurrence.

I had the initial elation myself (I got the news on Christmas Eve so it was a bit magical!), followed by those thoughts of, what if...? So I found it useful to have a "cancer break" for a few weeks - no Googling, no cancer films etc., just loads of normal life!

After this bit of time away, I was able to view it in a more practical way such as being vigilant (not obsessed) about changes and keeping a mental note of when my next appointment is due so I can look out for a letter.

Hopefully you'll find your way of reconciling what you've been through so you can move forward with other things and let cancer be an extra instead of the star of your show.

C x

Mummybear2
Posted by

Hi ladyC. 

Wonderful news that your WLE and Lymphnodes were negative and perfectly timed as an early Christmas present. A cancer break sounds like a wonderful start, we are going away on Monday so that’s as good a time as any! I need to do something as I’m still really struggling if I am completely honest with myself going to get some counselling too when we get back so I can say all the ridiculous things that are in my head that my family just wouldn’t understand.

thanks for the tips, 

mummy x

KTatHome
Posted by

Hi , congratulations on your negative lymph node results, great news. 

You know I have my own theory on missing that elation, I may be wrong but here’s the take from my own experience. After having had Pembrolizumab for a year and being clear, I took a break off treatment, a bit risky but also the way things were heading as the thought was, perhaps two years on treatment was too long, I really felt like I needed a break but waiting for the first scan and results was not easy. I started playing walking netball doing lots of walking, lots of distraction things as that’s my way of coping. I get a bit Spock like with coping, not showing feelings of fear, anxiety, depression, apprehension, I think if I do it really well stopping the negative emotions coming through, it can stop the positive emotions coming through to, it’s like the showing emotions switch gets stuck in the off position. So when I had the all clear news at my first scan off treatment I should have been celebrating and don’t remember doing so. A year off treatment and a recurrence, and waiting for that first scan result to see if Pembro was working again, (which it was) and no real celebration, hitting my 60th birthday and chickening out of booking a trip to Japan. I am a terrible example, I know we need to look on the bright side, I talk the talk of being positive but it’s difficult doing that for a long period. 

You asked how the mindfulness meeting went, umm thinking hard how to put this.

i know that I need a bit of help, hence why I’ve been giving myself a break from this site and have stopped being a champ. But I’m not really sure how I want to take things forward. The talk on mindfulness seemed a good idea when a friend mentioned it, an opportunity to find out a bit more about it without any commitment. I wish it hadn’t been on a day when I’ve been to hospital for a blood test for treatment on Friday, difficult to get cancer thoughts out of my head. Actually first few practises of breathing exercises were going well at staying in the moment, but after another member in the group was gushing at how good she felt, how she felt in a protective bubble, I realised I felt the opposite. The room was cold, the facilitator had been banging on about every day stress of being overworked and how mindfulness was good for that to give some space from busy lives. She was talking about how good it can make you feel giving breathing space to not look back on things. I felt I needed some reassurance and voiced how I felt, which I wish I hadn’t, and don’t know really why I am repeating this here. I felt out of my comfort zone, that my usual coping mechanism is to keep busy, and that keeps thoughts away where as these exercises are harder to keep the thought out. I don’t work so my stress is not everyday being too busy but is to do with a medical diagnosis where you can fear the future and could she say how mindfulness is good for that. I felt I got a lot of guff, not a proper answer, and any prospect of a successful next exercise being successful for me went out the window. In came a host of uncomfortable memories, and tears came to my eyes, I wanted to leave but couldn’t as I needed to take my friend home and stay to the end. 

I wish she had said mindfulness is not for everyone as it can bring some uncomfortable thoughts up, and it is not a quick fix for everyone it’s a skill to be learnt and can in the long term be really good. Instead her guff was, things always get better in the future, we can all choose how things affect us, that she has worked with people with terminal disease and with long term degenerate illness. 

So I would say read this link https://www.mind.org.uk/information-support/drugs-and-treatments/mindfulness/#what

that macmillan gave last week in there Wednesday wellness tips on mindfulness, explore it to work out if it’s the right time for a new skill, and where you can find accredited coaches, or on line training. You mentioned you were going to go for counselling, good for you, they might do mindfulness exercises to. I haven’t given up on it, just brushing off a bad experience, and realising I do need something aimed at the cancer experience, rather than anything more general. Staying in my ears was one comment from her that some of the people who come to her have been on anxiety forums which are not good and can get competitive about how bad an experience they have had, and can just fuel anxiety, so her advice is stay away from forums and do mindfulness. She may have just been talking about anxiety, and not all forums are the same, but in my head I wanted to say to her that she had just made a very opinionated statement that wasn’t necessarily true. I wanted to say to her I have volunteered on a very supportive forum which I feel is good at helping people feel that they are not alone, can help in talking things through, and can help in finding information. There are times when it will feel right to be looking at the forum and at the info and support pages, and there other times when it’s right to have a break. 

Apologies for the long post and outpouring, I blame treatment being tomorrow and scan being next week, the results will be two weeks later to see if I’m still stable or wether it’s on the move and a change of treatment required, or maybe I will get a surprise and a further response will show. I haven’t got the answers but I can sympathise and applaud you for taking action and hope you will feed back how you get on.

Best wishes 

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.