Diagnosed with Melanoma Sep 2020 and again in Jan 2021 - struggling coming to terms with it all.

Hello Musiclife, Hi there, I’m KTatHome my diagnosis was back in 2015 and I’ve had a few blips since then and those moments when I realise friends and some family just don’t get it or forget, but then I remember I wouldn’t have had any knowledge prior to my diagnosis either. Sometimes I think I’m my own worst enemy for helping them understand as like many I like to be positive most of the time but the downside of that is that people don’t always realise the blips in feelings and confidence that we are having. So yes it’s good to off load on here at times where people have a better understanding. My story is in my profile so I won’t go into that now, but if later you want a read, just click on my user name to get to it.

I tend to not wear sunscreen between October and March, (I think if I was out in refective snow that would be a different story) I start  using it again when the UV index is medium, but I always have some with me in my handbag and a sunhat. I have never been one for makeup so putting on suncream 15 mins before I go out and reapplying it has seemed a chore, a necessity but a chore non the less. I have been lucky enough each year to get some free samples of SPF50 5*UV suncreams, I won’t go any lower, I’ve only chosen the sensitive ones and haven’t found them too greasy, I haven’t loved any enough to recommend though, but I’ve been happy with them.

I like going out for walks everyday so the period of shielding was challenging, but we bought an exercise bike which I pointed towards the garden or put on the shaded patio. We use multivitamin tablets with vitamin d in them to compensate for lack of sunlight. I’ve never been a sunbather but played a lot of sport, and then you find a diagnosis makes you start crossing the road to keep in the shade, and people you’re with sometimes just want to sit in the sun, or think you are odd if you wear a sunhat before August. I found myself staring at peoples sunburn or dodgy moles in the first summer of diagnosis and find that’s common to. I hate people referring to it being sunny as a good thing, as Id much prefer it to be cloudy and cool in the summer, but then I always have but even more so now.

 My brother once laughed at my sunhat, I pointed out to him that it was a necessity and asked him if he would laugh at a cancer patient wearing a wig, as I see his laughter as the same kind of insult. He sulked for a bit, I got a backhanded apology for having no sense of humour, but it has made him think and understand and not do it again. 

Oops didn’t mean to start a moan, just meant to say hi 

Hi Musiclife,

Ditto to everything KT wrote! I also have a collection of crazy hats.  Few women in Pennsylvania USA wear brimmed hats but I have decided to walk with pride when I wear them. I carry a large purse to cram the hat into when I am inside a building for appointments or shopping. 

I also did not wear makeup when I was younger, but since my excision was on my nose, I have to camouflage the redness with concealer. I buy Jane Iredale (USA) concealer and foundation which has spf. I agree its an extra step to put makeup on in the morning but do it anyway! 

Finally, find a good quality vitamin D supplement. You can still go outside just cover up with clothing or reef-friendly spf.

Best wishes and I hope the results of the biopsies are negative!

Hi KTatHome, thank you so much for your message and so nice to emeet you! Sorry you have gone through this all since 2015, I read your story a feel guilty that I can hardly talk sounds like you have gone through such a bloody awful time! I completely relate family and friends really don’t always get it, all the people around me love a good tan to be outside in barely there clothes playing sports or chilling in the sun in a beer garden or festival. I now feel that can never be me again, I feel like a part of my life has been taken away and I know you probably think this is dramatic but I’m still trying to see how I can go on enjoying life but living in a different way to what I’m used to. I have been told by my consultant and other people at the hospital that I should wear long trousers and tops hats UV clothing all year round, if I had a choice, I would much rather wear what I want and be care off course in peak sun hours and wear sunscreen what are your views on this?

I like your idea on no-sunscreen October to March, that seems like common sense! I’m sorry you were shielding I hope that all is okay exercise bike is a good shout. How are you finding healing from surgery, I love running hiking any form of exercise where I can my daily endorphin rush, do you get back on it after 2/3 weeks? I guess it depends on o the size type of surgery.

I feel the same with the summer however unfortunately through I am quite fair I do tan easily I do like the look of having a ‘healthy’ outside glow, do you use any fake tan at all, or are you not that bothered? I have never been one for it but I have considered possibly using a gradual moisturizing one so I don’t look like the white one out of all my friends. Haha What are your views on chemical vs mineral sunscreens, I personally prefer chemical as I find they are better sweat resistant for playing sports and I don’t like the white cast you can with mineral what do you use?

Ahh I’m sorry about your brother my friends haven’t got there yet but I’m sure as summer begins, I will start getting comments! You haven’t moaned at all this is so refreshing thank you!

Hi Cindy!

Thank you for your message I will definitely have to get some cool hats! I always thought I would be the crazy dog lady not it will have to be hats! haha I use the zipvip Vd3 supplements at the moment which seem to do the job although I do not know how well! Hope your nose is alright and are copping through living through through this!

Thank you, fingers crossed!

Katrina 

Hi Musiclife, no I don’t think your being dramatic at all, it takes a while to get an equilibrium back, you mentioned you were diagnosed in September so you haven’t had your first summer yet, I think it gets easier later when you get more comfortable with your own dos and don’ts. 

I think it’s important to realise that what ever we’ve been doing was not enough so we have to do more to keep safe as sun damage is cumulative. We all have different risks maybe due to our colouring and dna, jobs involving being outside, the treatments we are on (as some can make you even more sensitive in the sun) etc, and I’ve heard nurses talking about some people having 8 melanoma removed. That must be frustrating for the nurses if they have in their minds that the patient wasn’t doing enough to protect themselves. I cover up with clothing and suncream in the places I can’t  cover. I will wear a Uv hat but also have cream on. I couldn’t override what your dr has said as they might have a good reason for you to take extra care. I have never been a sun bather, and I dislike the heat, I much prefer walking Netball on an indoor court than outside. We have some shaded routes around here and pick the more shaded ones according to the weather. 

Most suncreams are chemical or at least a mixture which is why the 15 mins before you go out is important to let it soak into the skin. My skin would never have gone brown so I’m not bothered about staying white. I used to have freckles but they all disappeared when I was on Dabrafenib. I have minimal experience with surgery as my primary was never found, and the lymph node I have had removed was by keyhole surgery so very small incisions. If they do surgery again it will be major I’m told as my current nodes that are enlarged are deep down in the groin area but at the moment my immunotherapy continues are were waiting to see what the next scan brings. My nodes seem to have fluctuated a lot in the last 1 or 2 years hence the wait instead of going ASAP for a removal. It’s taken a bit of getting used to, actually I’m not used to it I still have hope for better news, but appreciate stable or fluctuations isn’t terrible news.  

Hi ‍♀️ I’ve joined on here this morning as I was diagnosed with MM last January. Had it removed and a year on been given all clear and been discharged  I am with you all the way in regards to living for holidays and been out doors with a summer glow all year round! I ‘Used’ Sunbed often which is really really hard because this is the nature o business too... I am living with using St Tropaz on a regular basis and honestly not feeling to bad! But, we have a holiday booked for August and I am absolutely dreading it!! I can’t live likis... I will wear a factor 50 all day every day, but the feeling of being on a beach with the sun is honestly what I live for.... The fact I am going to have to live my life covered up is just sitting with me right.... I know how stupid this sounds to everybody, I say it every day in my head... As for family..,. It has just been forgotten about and they just don’t understand and say skin cancer won’t come back in any other form when I know it can... So so sorry for the rambling just so much going on in my head right now ‍♀️ xx

Hi , , Thinking Positive and KTatHome,

Thank you for raising so many important points in this thread.

Cancer has such a profound impact on our lives and coming to terms with what we "lose" when we are diagnosed with skin cancer is very hard. Peace of mind for a start. Carefree days in the sun. Being able to strip down to minimal clothing when it is hot. We also have to live with scars and sometimes deformity and the side-effects of immunotherapy. Getting used to these limitations on our lives is not easy and personally I think it will take years for me to fully accept what happened and the impacts. Don't get me wrong. I am truly grateful that my melanoma was caught before it spread but I wish this hadn't happened to me. If it had to happen, then I wish the melanoma was anywhere but on my face.

It makes me livid when I see how cancer is depicted in much of the press. People "bravely battling cancer" or getting the "all clear". The battle, is in continuing to live our lives as best we can throughout our treatments and in coming to terms with the changes in our lives. Dealing with bad days. Getting motivation from good days. All clear just means that a test did not find anything suspicious. Sadly people interpret this as meaning that the cancer is cured and will never return. The reality is that we must always take care to protect ourselves in the sun to reduce the liklihood of reccurence.

Friends and family, even with the best will in the world, simply cannot relate to what we are going through. They want to believe that we are recovered and have turned the page on the cancer story. That life continues as before. Back to normal. If only ... The truth is that our lives have changed. Not necessarily for the worse but changed nonetheless. And sometimes even for the better. Since starting my draconian skin protection regime 4 years ago my face is much less weathered looking, the skin is plumper and far less lined. A little silver lining I hadn't anticipated :)

And while we must cover up in the sun, we can wear whatever we like indoors and when going out for the evening. No restrictions once the sun goes down!

Take care

Miranda

I too would like to thank you for raising these points.

I was diagnosed in Sept 20. Initially I dealt with it really positively, I was relieved to have it dealt with quickly. Two week fast track appointment, biopsy and WLE 4 weeks later.  Since then the aftercare has been rubbish.  I wasn't told it was melanoma but instead got a hospital apt for a WLE. I then had to ask and was told both biopsies were MM. No info after the WLE. I have had to ask for a follow up apt which should have happened after 3 months but didn't get it until 6 months. I was deficient in vit d, blood test in Oct but my GP not informed until Jan.  In my follow up apt, consultant dismissive of concerns, brief check of lymph nodes but no skin check. I am not a super anxious person so dread to think how somebody who is would feel. 

It is def affecting me as we move into summer.  I feel super conscious of 'talk' about the sun, summer, holidays etc. I can also relate to the fact people have very little understanding of melanoma. Well let's face it we were all prob the same before our own diagnosis.

Hi all, I’ve not been on here for ages, but just popped in to see how everyone is doing.

In response to your question about sunscreen for the face , I’ve discovered this which I love! It’s a really matt base and not sticky at all - it actually works quite well as a primer under makeup. I’ve been ‘trying’ to use it more consistently, but we’ll see how that works out once I’m back in the office more regularly. It’s one thing applying spf before going out at the weekend, but I might find 6:30am before work when it’s raining a tad more challenging! I’ve been using loads of different skincare products this year though (acids & retinols etc) which make you more susceptible to the sun, so I really do need it. (Disclaimer- the skincare routine is achieving very little, but it’s kept me occupied during lockdown lol!)

Best wishes everyone!

Kate x

Hope you are well latchbrook. I have some questions about sunscreens. I have been reading that some do not provide the protection that is indicated on the label - that's capitalism for you. I got some neutrogena sunscreen which has oxybenzene in it which I read somewhere can cause blood cancer and the spray version  has been withdrawn for that reason. People seem to mention sunsense often - perhaps I should change to that? I am a bit confused about how to be sure the sunscreen dies what it says on the tin, and is not cancer causing. Do Macmillan provide some sort of guidance on this? X