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January 27, 2015 at 12:49 am #22329
Recap, original mole found in December 2012, left thigh, followed by nodal clearance, followed by a few in-transit recurrences one year later. The last one was excised last June, 2014. I have had a break since then from melanoma, a suprise to all. My team expected that my melanoma would have spread by the end of 2014 and that I would be starting treatment/Ipi. It didn’t spread
None of the above is the reason why I am posting.
I had a lovely melanoma free Christmas. I was lucky. My last regular appointment with my oncologist was about two weeks ago… I am usually well prepared for my appointments. My eldest sister, a pharmacist, usually attends appointments with me. However, a few days prior to the appointment I found myself not wanting to go see him(like a child). I didn’t want to talk about melanoma. I didn’t want to ask questions…(Obviously I did have to do all of the above!) I told him how I felt and jokingly asked him could I not come back again to see him until I really needed to… Shortly before Christmas also, I had my regular appointment with my dermatologist. I never have a problem with these appointments. I always go in to her on my own. However, this time was different. I found I completely zoned out whenever she spoke. All I could think of was that someone else should have been with me. I was a disaster. Later, I could not recall anything that she had said during the appointment. I promised myself that in future I would never go to an appointment alone …
A few nights ago, I found a small new red lesion up high on the left side of my back. I momentarily got a fright. I thought, with relief, ‘no worries, if this is a new primary it can be whipped off and that will be the end of it’. I showed it to my sister (a different sister than the pharmacist mentioned above), and she took some pics. I covered it up and pretended it wasn’t there for another few days. I told her not to ask me about it. I would call to her in a few days again and she could take more pics. We have had three photo sessions in total! The lesion hasn’t gone away. All this time I am secretly fighting off the worry that this new lesion could be metastasis.(I think it probably is
) Though, what do I know.
I have arranged an appointment with my dermatologist for tomorrow for her to take a look at it. I am sitting here now and the same ‘not-very-helpful’ feelings are back. I don’t want to see her. I don’t want to know about the mole or talk about it. I think I’ve just had enough and I feel like I can’t do melanoma just now. Obviously, I know I have to change my attitude quickly, before tomorrow. I don’t have a choice! I am usually very on top of things. Neither of my sisters can come with me to the appointment in the morning. My mother is coming. It will be her first time.I don’t think she has any idea how big this might be. I will have to forewarn her in the morning I am worried about the anxiety all this will probably cause her.
I am aware that there are so many wonderful people here fighting much tougher battles than me right now. However, I am sure that there are some of ye out there that have felt like me on occasion – feeling so emotionally tired from melanoma that it’s challenging to be your own advocate. Has anyone any advice for me? Is there any holiday island that we could all go to for short holidays !!
I think I am worried too about skin metastasis. I know nothing about it. I have seen horrific looking pictures online. I have only ever thought about metastasis to distant organs. I know I shouldn’t be thinking like this. My dermatologist hasn’t even seen the little red lesion yet!
Sorry for voicing my fears like this. I know I will be fine. I always am and I always will be. We are all strong here. And I know time will answer all my questions. I am just feeling tired and emotional. I would love some support from you guys. Anything to get me back on top of things.
To be honest, I’m starting to feel a million times better already after writing this
AnneJanuary 27, 2015 at 12:57 am #66194
I forgot to stress that this new lesion is on my upper back/left shoulder and my primary was down on my left thigh. If it is metastasis it has travelled far this time which is why i’m feeling more scared than usual. This is very new for me. My recurrences have always been in my thigh.January 27, 2015 at 6:15 am #66195odonoghue80Participant Anne, first thing I would say is to record your doctor appointment. Especially if you are going on your own, you can easily miss points the doctor makes. If you have an IPhone they have a great voice memo app built into the phone and it records really well. So do that, and then you can send the file/message to your family and friends what the doctor says. Plus it’s really hard to remember everything even when your game is on point. So I def recommend this.
As far as being tired and scared, everyone feels that way, and that comes in waves. Some times your up, sometimes your down. However, skipping doctors appointments is not wise. I know from time to time I can get some anxiety before a new scan or doctor appointment, I think all people do. This is normal. However putting the appointment off or skipping the appointment will only fuel your nervousness. Plus, once the doctor tells you this lesion is not melanoma you will feel great.
Here are some things I do when I’m feeling down:
Listen more music.
Watch a documentary on a great person or team (I’m partial to sports documentaries for inspiration).
Watch the Jim Valvano or Stuart Scott speeches on YouTube.
Set yourself a short term goal like; start working out, set up a time to make a call to an old friend you lost in touch with (you and them will feel better), work towards a vacation, clean out your closet. These are just a few random thoughts but it really feels good to reach some short term goals.
Hope this helps, but remember to record your doctor appointments if you are on your own. It’s too difficult to talk to a doctor and take notes.
Best of luck Anne,
ShaneJanuary 27, 2015 at 2:39 pm #66196Catherine PooleKeymaster
Please don’t apologize for venting here, that is what we are here for. I know that frightful feeling. you mention. You will feel some relief when you get a definitive answer on this lesion. I hope that is soon. I also highly recommend mindful meditation, we’ve talked a lot about that here and how helpful that is. Massage or something else relaxing just for you is important. Let us know!January 27, 2015 at 3:28 pm #66197msue5Participant Hi Anne
I have recently been feeling the same way. I just want to bury my head in the sand. Well actually I’d like to go to the island you mentioned. I skipped getting scanned this time ( 15 PET Scans so far). It did help some but that worry never goes away. One thing that helped me was to start a Care Pages so I could keep everyone in my large caring family up to date instead of everyone calling me and reminding me over and over that I have Cancer. It also was therapuetic just to write about what was going on. I have to say the worry never goes away but comes in waves. Also my physical pain and disabilities from surgeries remind you daily and I know you suffer from some of that. I attend a Melanoma Support group and next month the topic will be mindful meditation. I am looking forward to this. I am in the waiting room now while my husband has his knee replaced. Things will be tough at home cause I can barely take care of myself without paying the price.Our kids are close by and will help out. My husband is strong and healthy and will probably recover quickly but there are days when I just can’t do 1 more thing. He is not a whiner or needy so I am lucky. Just know you are not alone. Try the care pages. It’s great and before family get togethers my cancer is not the elephant in the room! But if 1 more person tells me how great I look I’m going to lose it. How do I respond to that when I am suffering from debilitating pain. I would like to hear how other people respond to that statement. Music is my therapy and when I’m down I turn up the music and my blues fade away most of the time. Best of luck!
Mary SueJanuary 27, 2015 at 3:52 pm #66198MathewRParticipant
Mary Sue, I’m glad to hear that your melanoma support group will be covering mindfulness meditation. I’ve posted before on this (as has Catherine). I can’t recommend it enough and would encourage all to look at enrolling in an “in person” 8-week MBSR program if feasible.January 28, 2015 at 2:32 am #66199goldfidlerParticipant Hi Annie,
Thank you for sharing your feelings on this topic. The same thoughts were going through my head just yesterday. Another set of blood vials at the lab. Another meeting with the onc. Another infusion. Another 3 hour wait with vitals every 15 minutes. And as I am thinking all of this, this glorious woman, about 80 and wearing a bandana to cover her head, shoots me a smile. This woman is dealing with 10x what I am and can still smile to a stranger having a bad day. Glorious woman. I will never forget that.
Keep in mind all of the following is completely illogical and shallow and dumb. But they are still my feelings sometimes. For me, I just want to be normal again. Or at least ignorant. I wish I didn’t know that I had cancer, even if I actually did. I wish the next appt, or scan, or blood test wasn’t lurking around the corner. And especially after the last scans were good, I don’t want another one. The next scan might be bad. I want to keep the good one I had before. And it goes on and on and on in my head.
And then I think… I already have Stage 4. Can’t get much worse. Maxed out the scale. This is just the next step in this journey. But then I think about my family and friends. I think about some great experience I recently had. I think of something that made me smile. I think of someone I love. I think about something I have been wanting to do or see before I die but commit to doing it that exact day.
But then the 20th person of the week says, (in a soft soothing tone) “ohhhh. Hi Matt. How’s it going? How are you feeling?” And then stares at me with that look of pity usually reserved for someone whose only child just got sent to prison. Then you share the same story that you have told 150 times and they say “well, you look great and you are going to beat this thing.” Blah blah. And then the opposite hits and they want to pretend you are healed and invite you to participate in some activity that you used to be able to do but that you cannot do anymore, for whatever reason. Sometimes, on some days, you just cannot win for losing.
And then there is tomorrow. I remind myself we are just focusing on today. And being the best you can be now. In 2 hours. Just today. Sharing on this forum helps me. Like math and business problems help me. Find something that makes you happy and do it. And know that we are always here to listen. Always.
MattJanuary 30, 2015 at 11:26 pm #66200
Thanks a million everyone for your kind and supportive words. I can’t express how helpful your messages have been.
My dermatologist took one look at my new worry and said it was a harmless blood vessel thing. She had a name for it but of course I can’t remember. Catherine, you were correct – I felt huge relief after my visit. To date I have had four recurrences and three false alarms. I’m still convinced that it is of utmost importance to get any change checked. Worrying, as much as I was while writing my original message above, i think is a part of the experience for us, regardless of the outcome. One can’t know how melanoma is behaving in one’s body. And we can’t take any chances!
I had a leg/pelvic mri done on Wednesday last. I’m so relieved and happy now that I am not expecting any melanoma to show up on it.
Mary Sue, I hope your husband is doing well after his op. It was a real comfort to hear that both yourself and Matt feel the same as I do from time to time. Fed up and needing a long break from all this. I can really relate to Matt”s comment about wanting to feel ‘normal’ again. That’s exactly how it is for me too Matt, especially after the exhilaration of a positive scan.
Shane, I certainly would never be unwise and miss appointments. No matter how detached I’ve been feeling of late, prior to appointments, I am always prepared going in. That said, it could be the early hours of the morning when I am finally compiling my list of questions for my doctor. I will drag the good times out until the very last minute!
Recording appointments on a phone app sounds like a great plan. However, I wonder how a doctor would feel if I made such a request. Has anyone ever done this? I think that it could make for a tense atmosphere in the office?
Thanks again for all your replies. As I type, I am looking at my dwarf daffodils that have recently blossomed. They are truely beautiful. ( I would love to share a picture of them right now if I could!) Here’s hoping that the arrival of the Spring will bring hope and better times for us all. It’s the small things that keep me smiling every day
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