Things on my mind

Hi I understand how you feel as most people who have or have has a melanoma diagnosis have felt at times anxious and sad. It is a big shock especially if the person has been in good health all their lives and is not a sun worshipper. I always write down the questions I want to ask the consultant and if I get emotional I just hand over the list for them to read .If possible it is good to take another person with you to the appointment but this is not always possible in these times. It is policy in most hospitals to get a written letter from the consultant explaining what has been said as well. 

I hope you hear soon and then it will hopefully put your mind at rest. Whatever the outcome there are some excellent treatments these days. I should know as have been in the system now for over 10 years and am on immunotherapy at the moment. Try to be kind to yourself and do somethings you enjoy. I know some people don’t understand what you are going through as it’s hard to step into someone else’s shoes. They are trying to be reassuring and you said there is a good chance that it hasn’t spread to the lymph nodes. Make the most of each day and try to get some fresh air. It always makes me feel better. Hope all goes well for you. 

Thanks for the reply, I will definitely be writing things down and taking it with me from now on, unfortunately they won't allow someone in with me due to covid, I know people are only trying to help and put my mind at ease. 

Hi Daffodil18,

Will it come back? That question cannot be answered. Understandably, waiting on results is hard. Once you get the results, then you can make a plan with your doctor.

I find these forums are helpful when reading other peoples stories. I had never had a disease before so it did take me a while to accept I wasn't invincible yet I am still able to get on living a happy life making adjustments in my habits as needed. For example, I proudly wear my wide-brimmed hats even though in my area most women do not wear hats. 

Wishing you a good outcome!

Hi Daffodil18

I don't think there will be many people who are diagnosed with melanoma that haven't been where you are now. Having lots of questions about my diagnosis was what brought me to the online community in the first place.

It was 4 years ago since I received my diagnosis and my husband accompanied me to my initial appointments so that he could act as a second pair of ears and also to remind me if I forgot to ask a question. Understandably that can't happen at present but there are a couple of things you could do, with your consultant's permission, as well as writing down your questions beforehand and also writing down the answers.

• You could record the appointment on your phone so that you can play it back again if you've forgotten some of the replies you got.
• Alternatively you could have your phone on 'speaker' to the person you'd like to have with you so that they can hear what's being said and also join in with the conversation if they felt it was appropriate.

One of the questions the consultant won't be able to answer through is whether you'll get another melanoma. Hopefully you'll have been given a leaflet which lists how you should protect yourself in the sun from now onwards to minimize the chance of getting further skin cancers as it is true that once you've had one you are more at risk of getting another.

As for whether it has spread to your lymph nodes or not I think I'd turn the consultant's figures around and instead of saying there's a 20% chance that it has think there's an 80% chance that it hasn't!

Like you, when I was first diagnosed every little ache and pain I felt made me think that the cancer was back but I now recognise the aches and pains for what they are and that's usually just aches and pains. I would be lying if I said it never crosses my mind but, with time, you should find that you worry less.

I think when people say things like "it's been cut out it's gone now" it's mainly because they want to reassure you and possibly because they don't understand what having a cancer diagnosis is like. Those people who really care will take the time to understand and you'll probably find out who your 'real' friends are. 

x

Thankyou for the reply I really appreciate it, I know some questions can't be answered and I fear the unknown. I'm having a lot of bad days at the moment I'm not enjoying anything and I don't want to do anything. I have anxiety and I struggle to talk to people and with awaiting these results I feel I'm stuck and can't plan my future. I have phoned my cancer nurse on many occasions but end up putting the phone down before they answer because I don't know what to say

Write down the points you want to say and explain how low you feel. The nurse will reassure you it is normal to be anxious about waiting for results .She may give you suggestions of coping strategies.. It’s easy for me to say but as time goes by it does get easier to deal with and once you get your results and know the situation it will help. Take each day and try to do something you like to do and talk to the people who you know will listen sympathetically. I know from experience some friends seem to have more empathy than others . Maybe the nurse will be able to get the results quicker for you. 

Thank you 

Hi. I too have just recently been diagnosed as having melanoma and like yourself am not a sun worshipper. I too was filled with fear and anxiety. I couldn’t eat or sleep and just felt lost. I got out of hospital yesterday after having my WLE and lymph nodes removed as my melanoma has reached them. 
i can only echo what everyone else has said about writing down questions to ask.

Also I was told only to deal with the facts I had and try not to think what if. I know that’s easier said than done but it did actually help! 

i also listened to a guided meditation every night while lying in bed and it honestly helped me destress and I actually managed to start sleeping again.

After being told my whole body also ached which again sent my mind into overdrive. My CT scan results came back clear and from then I haven’t had an ache. I think my body was aching from stress!

hope all goes well with you!