Fed up

Lisa hello . I’ve never responded to anything on this chat before . Don’t know if it will work . You are not alone !!! Its not only you , It’s a real test . I’m eight years in now but my first mm diagnosis was 1999. It came back . So 22 years really . I do want you to know tho that treatment is amazing . Waiting is hard I hate it too. Have you good friends ? X

Hi, thankyou for replying, just think I’m having a low day today. Yeah I have friends and some I can talk to although I’m surprised at some that just say keep positive it will be fine and it makes it feel almost as though they are dismissing what you are going through. Does that make sense? Xx

Total sense . You will learn a lot about people on your journey. ! Mainly I find fear of saying the wrong thing is what most people suffer with . Fear that it might be them . Avoidance. Also some people are really really scared. Unfortunately you have to try and forgive that sort ve stuff . In a quiet way my people have learned to quit the positive word . I can’t swear on here but I do at them if I am told to be that word. !! I hope that although you are waiting for it to explained to you , you feel well in yourself. Try and give yourself a sneaky break from anxiety, breathe in, be selfish and put on the best film and give your head a rest for a minute . It’s hard but distraction is our only weapon x

Thankyou so so much! Just think I needed to hear I wasn’t going crazy and that I’m not alone in my feelings! Going to give my head a wobble, jump in the shower and make myself feel better! Thanks so much xxxx

Hi Lisa ,I am waiting for a surgery appointment for Lymph node clearance , I have had many tests and scans and appointments for the last two months , weirdly as you go along it’s kind of good to know your going to be seen but coping with the whole process is traumatic you can allow yourself to be in that , I’m also an avoider of wanting to hear the positive word and have tried to rephrase it back with I’m trying to be compassionate to myself but thank you positive isn’t a place I can be in at the minute.

then literally take on a new distraction if you can I never gave myself time to read and I’m trying a few pages a day , I’m also investigating meditation , again not something I understood but just reading something linked to the situation and trying to help myself feels a good distraction in a really incomprehensible situation.

Anna H21 hi I’ve not heard of anyone living with a melanoma journey for 22 years you must have some highs and lows do you have more details of your good periods you would share please ? 

Thankyou for taking the time to reply. I do feel better after having a little rant yesterday. The positive word is so hard, you just want to shout at people when they use it! Although I do know deep down they are just saying what they think is right, I think I am guilty of saying it to someone in the past, I won’t again.  Meditation sounds good, I think I will look into that this week. Thanks so much again to both of you for replying xxx

Hiya.  When you say good periods do you mean when I was  cancer free? Periods of being free ? My original mm was 1999, on upper inside leg.  Had that removed etc. big scars. so a long period bringing up children cancer free apparently. No . Large lymph found 2015. Groin dissection. Enourmous scar. Bad. Immuno therapy didn’t agree with me and put me in intensive care, and I then was off the treatment. Then I got Thyroid cancer . Bad . Had that removed. Treatment. Four reoccurrence of mm in the last few years in upper leg . Leg looks like a war zone . ! And feels awful , like most of that leg. Now they’re looking at a lung mark .it’s  Wonderful having clear scan results , but haven’t got that at the moment. A great thing is that when I do have another thing pop up I’m already in the system and the team have all the back ground info so everything moves very fast which is brilliant. It’s an emotional rollercoaster I would love to step off. It gets exhausting. One positive I try and focus on is that a lot of people go on through life without things diagnosed until it’s too late but if I do as much as cough I’m examined with a fine tooth comb so I have count myself lucky for that, such amazing care . And I am very grateful . Are you ok ? Xx

Dear Anna H21 , I’m so grateful for your personal account of your stages since 1999 thank you , I hope I didn’t distress you writing an answer at my request.

22 years is the longest timescale I have noted I’m in awe of your spirit you must be a determined person.

I send warm wishes to you to get a clear for your lung mark.

In answer to your request if I’m ok , I’m just going through the motions of unexpected shock seeking a place to settle my thoughts to try to focus on a outcome of cutting this out asap .thank you for asking .

Hi Lisa you are definitely not alone . I had a mole removed last summer and told it was melanoma, was given all the Macmillan books about it to read , which I threw aside as I was so fed up .After 2 weeks of getting my head around it all, decided to read the books, and all the emotions are normal , gave a step by step on what to expect next , also found this group through them . My advice would be , try and get through one step at a time , try not to over think ( this is easier said than done , I know ) and keep your mind occupied. When people say stay positive, they are only being kind because they probably don't know what else to say . I have had problems with my parents, I'm 49 and they don't seem to realise how serious this can be .When I first had my mole removed with several stitches , they failed to phone to see how I got on , and when I had my first lot of immunotherapy, in which I was apprehensive about , again they didn't phone .In the past we have been a close family , sadly not anymore, which added more stress . So I am so greatful I have a wonderful husband, and amazing friends that keep me going . Sorry iv ranted on about my journey, but all that you are feeling will be normal , don't read anything on the internet stick to those books , they can be very helpful. Good luck with every think x

Hi Lisa

I hope you're feeling more like your normal self now but I can completely understand why you're feeling fed up. Have you had the results of your ultrasound yet? 

When you get a minute it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x