Support systems

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    • #7611
      Anonymous
      Inactive

      Hello,

      I am new to the forum. I am reaching out to hear how other peoples family and friends have supported you.
      I was diagnosed with Stage 1 Level 2 melanoma (found on my back) in May. Just yesterday I had the wonderful news that all follow up pathology reports came back clear. I am melanoma free and did not require further treatment.
      I got the usual “Like’s” on the FB status and people commenting on my wall, but it is those that are close to me I am surprised by.
      My husband referred to my removal as a ‘cosmetic procedure’ and melanoma is ‘no big deal’. I feel like celebrating and my parents send a text.
      I feel really deflated that I am the only one who takes this seriously.
      I am the one who needs to follow up with a dermatologist every six months. I constantly check my skin, wondering if a mole has changed or am I seeing things?

      I feel very sad.

    • #7612
      Anonymous
      Inactive

      Hi Nic, I am so happy for you that your pathology came back clear, wonderful news. Any diagnosis of cancer is scary and I totally understand your fears. I was diagnosed last fall at stage 3, Level 4 and am currently on the 11 month maintenance phase of interferon. When I was first diagnosed and before I was staged I got similar reactions from family and friends. It almost seemed like they were fluffing it off while I was terrified. I think a lot of it stems from ignorance at how incidious and aggressive this cancer can be or perhaps they are just trying to be strong and keep positive for you. You need to voice your concerns and let people know how frightening this is. I’ve already been to the doctors once thinking I had a suspicious mole (ingrown hair LOL) as foolish as I felt she made me feel like I did the right thing. Once My family and friends were educated on the stats of melanoma I found them to be much most sympathetic and supportive. I still have days when I am really worried but for the most part I try to remain positive, take one day at a time and be thankful. I wish you well. Stay strong, you got this:)
      Ramona

    • #7614
      Annette CyrAnnette Cyr
      Participant

      Hi Nic,
      I don’t have to imagine how you feel – many of us have had comments along the way that diminish the diagnosis. After so many comments like ‘ you are lucky it is only skin cancer’ and one nurse of my family doctor saying ‘why are you so worried – my friend goes in and has those burnt off all the time!’, I cam to realize that we can chalk it up to a continued lack of knowledge about skin cancer and melanoma. While I wouldn’t diminish anyone being treated for the most common skin cancers – basal cell and squamous cell – those can be extremely disfiguring and in rarer cases, deadly as well, Melanoma is often misunderstood as just another skin cancer. Your husband may not know what to say to support you or he may just be unaware of the disease and how serious it can be.

      The fact is, nearly 90% of patients are treated early and will never have an issue again if caught early – which is amazing and great. It doesn’t take away how scary it must have been for you to be diagnosed. I too, initially had a stage 1 melanoma. I remember joining my friends team for the relay for life, and feeling guilty as I explained to the other members that I only had melanoma – where all of them had dealt with breast cancer. I felt like I shouldn’t make a big deal of it – even though I was traumatized and had to have skin grafts and in a wheel chair for 3 months! I felt like I didn’t have to go through chemo or anything else, so it really shouldn’t be like other cancers. The fact is melanoma is a very serious cancer when it spreads. We all need to be diligent about checking ourselves. Time doesn’t heal the fear, but the further you are away from a diagnosis, the easier it gets. I don’t know that it ever totally escapes you and you don’t think about it – but perhaps that helps us to keep checking our skin and lymph nodes. This may give you a bit of control over the disease – at least with skin cancers, in most cases, we can see it on the skin first.

      Try not to be too concerned how others react – we can’t control that. You can always let him read one of our booklets to improve his understanding.You can tell him how this diagnosis made you feel and how his reaction made you feel. Sometimes people can’t read our minds. It might help. You will have to use your best judgement as to what you have the energy for.

      We can empathize and know how scary a diagnosis can be..we can also celebrate the fact that you are free of disease, but need to regularly check your own skin. Take pictures of anything suspicious alongside a ruler. For the first while, you may be hyper-paranoid of anything – realize that is part of a cancer diagnosis. Take control by monitoring – anything that is changing after 3 weeks, go in to have it checked.
      Hope this helps.
      Annette

    • #7615
      Anonymous
      Inactive

      Ramona and Annette,

      Thank you for responding. You both make great points.

      I spoke to my friend, who also happens to be a minister, about how I was feeling so I wasn’t bottling it up and she said that perhaps my husband was sheltering himself from it.
      I chatted with my husband last night and he says that he realizes he should have given me more support over the summer and given me more love and attention when we received the news I was all clear.
      He said he was not sheltering himself because he honestly didn’t stop to think about how scary melanoma actually is, or how I was feeling because my prognosis always seemed positive. It never occurred to him that this was a cancer diagnosis, rather than a cancer scare.

      This may sound strange, but the comments about “only melanoma” and the removal being compared to a “cosmetic procedure”, reminded me of how I felt three years ago when I had a miscarriage. I got similar reactions (not my husband but other family and friends) about how I was “only 8 weeks” and I was “lucky I wasn’t further along” as though the heartbeat I saw on the screen a week prior meant nothing.
      The lack of tact and how others find it easier to brush under the carpet what they don’t understand amazes me.
      Sometimes a hug and for a person to agree that, “yeah, this majorly sucks” is all I need.

    • #7616
      Annette CyrAnnette Cyr
      Participant

      So glad you talked about it. Sometimes just letting others know how you are feeling helps to create more understanding. I think we forget how to talk and express our emotions and thoughts in this technological worlds. Of course it is scary, but difficult sometimes for others to understand. I am so glad you caught it early. Just remain diligent and sun safe!
      Annette

    • #7625
      Anonymous
      Inactive

      Hello Nic! I hope you feel better having come here and receiving much support right away! Happy you reached out and found everyone here. I’m sorry I didn’t get to you even sooner but see you have had the pleasure of supportive company with Annette and Ramona! Diagnosis is scary for anyone, no matter the stage or severity and it certainly brings forth many emotions, questions and imagined outcomes. I’m happy to read that your husband has come ’round and is realizing indeed a “diagnosis” and just what melanoma truly means and also what you must have been feeling.

      Your comparison of being told it’s “only melanoma” to having had a miscarriage and hearing “you can always have another” or “you weren’t very far along anyway”, is a very poignant point to make, not strange at all. Just recently once more I have had someone say, “Oh, but that’s a good cancer to have isn’t it, if you’re going to get one?”. The bottom line, it’s cancer, it’s frightening and it never feels like a “good cancer”. My sister has had several Basal Cell cancers removed and each time her fear of what that means is very real and she, just like myself sees a dermatologist every 6 months and checks her skin regularly as well! My hubby is well aware of the need to monitor and if either of us sees anything we hadn’t noticed, he is now just as diligent in grabbing the camera to record and watch for changes. 🙂 I was diagnosed Stage 3 in Feb. 2012, following the removal of a weird mole which had begun to bleed. I had two surgeries and with finally being NED; no evidence of disease, had the approval for treatment with Interferon. I completed the year of treatment in July 2013.

      I’m happy your melanoma was caught early and didn’t require the regime of treatments but indeed you want to remain diligent in going forward, see a dermatologist, act on anything that seems to be out of the norm or bothering/concerning you.

      Take care of you and while being diligent remember to keep enjoying life for all the wonderful that you can!

      Cathy

    • #7627
      Anonymous
      Inactive

      Hearing your stories has made me feel much better.
      To know that how I feel about the reactions of others is common, albeit sad, has helped me express myself because I don’t feel like I am being irrational.

      You all have been so positive while at the same time expressing your own fears and concerns through your responses. Your strength is amazing!

    • #7652
      Anonymous
      Inactive

      It really does help to know you are not alone, nor alone in how you feel about your own diagnosis, regardless of stage! Strength comes from knowing what you feel is perfectly within the realm of what’s happening to you and it needn’t be justified by or for anyone.

      Keep in touch and take care.

      While everyone’s experience will always differ somehow, we all understand the fears at hand and you just need shoulders to lean on and help you through, no matter what lies ahead.

    • #8295
      Anonymous
      Inactive

      Hi I had mole roved six months ago from ankle …melanoma stage 1 …every six months see dermatologist now….I’m scared …I look at skin once a month …time does make it easier but I hear of people having it return even after ten years so need to live wth the fear….not let it comsume us ….enjoy chatting to other people who have had it …no one I know in my life has had it..and husband says oh u will be fine which doesn’t hel ..chin u stay positive

    • #8296
      Anonymous
      Inactive

      Hello vickimiller,

      So happy to hear yours was caught early. That is great news!

      We all get how you are feeling. The reactions we have received from spouses and loved ones are no different to yours. Feeling deflated from the lack of understanding does not help when we are fearful.

      I hear what you are saying about checking your skin. I am approaching my next appointment with the dermatologist after Christmas and am already thinking a little too much about it. As you said, trying not to let it consume us is important.
      Staying positive is hard, there is no doubt about that. There are days when you don’t think about melanoma and days when it is all you can think about.

      When you need to reach out or need to vent we are all here for you!

    • #8297
      Anonymous
      Inactive

      Hello Vicki Miller,
      Your fears are so well understood and justified, though you needn’t justify them to anyone considering what you have been through. Happy you found your way here for support and while people mean well by saying “stay positive” chin up it can be very difficult indeed. Life is full of uncertainty and then add a diagnosis of melanoma/cancer and that level of uncertainty is immediately raised!
      I find I go in stages with being really good at focusing on interests, work, etc. and keeping my mind off of uncertain fears, and then unfortunately have those periods when those fears are constantly occupying my mind. I remind myself to ENJOY all the wonderful of each day.

      Just as Nic has said we are all here for you…questions, venting, reaching out! Take care of you and I hope you will find some way to ease your fears and in doing that find strength to go forward and enjoy life.

    • #8306
      Annette CyrAnnette Cyr
      Participant

      Hi all – yes, we get these types of calls and emails from patients often. Helping to educate our families and the public will help bit by bit. But it is an uphill battle for awareness. Most confuse this cancer with basal cell carcinoma – which, for the most part, is easily treatable. But that is not meant to diminish people affected by basal cell – the most common cancer in the world – as they can suffer debilitating scaring from repeated treatments and surgeries. Recently, famous Canadian star of Phantom of the Opera passed away from many years of basal cell on his face – poor man. So, people dismiss our pain more from a lack of understanding than anything else. It doesn’t diminish the additional hurt that causes and the lack of support or empathy for what we go through having a diagnosis.

      If it helps, tell them you may have dodged a bullet, and you hope is never comes back, but it is a very serious cancer – print off our booklet or pamphlet for them – in our patient resources section. Yes, this is a very treatable cancer if caught early (like most cancers), but also one that is very stubborn and persistent. Living with a diagnosis should get easier over time – the fear of recurrence is so common with patients – but if it becomes too much to handle and disruptive to your life, then some counselling or professional help may be in order.

      We are also starting support groups in major centres across the country in the New Year and also our peer support program – Within Reach will be starting as well. Let me know if you are interested in any of those resources. Best regards
      Annette

    • #8398
      Anonymous
      Inactive

      Hello Nic,

      How I am not surprised! I can relate. It is very interesting how sometime the ones closest to you seem “less” supportive than others. The Spouses have a tough time as well. I have fought stage IV for more than 2-1/2 years. We have our different HELLS.

      I think that FB “like” comment in our situations is a big BS. So by pushing the “like” button people must feel good about themselves by “supporting” you. How about coming by my house sitting down with me for a coffee or tea and spend some time with me. Or why don’t I take your kids to practice so you can rest or it you feel well, do something for yourself. Why don’t I come by and cut your lawn? It take so much less effort to push the button and “support”.

      KEEP FITING

    • #8408
      Anonymous
      Inactive

      Hello Anonimous,

      It is true that at times like these you really find out where your “real” support comes from.
      I have spoken to some of those closest around me to let them know I am not afraid to talk about it, and nor should they be as the fear of melanoma returning is very real for me.

      Stage IV for 2 1/2 years. Wow! How are you doing?

    • #8960
      Anonymous
      Inactive

      Im new to this website.
      I had my 2nd melanoma removed 2 days ago off my collar bone area. June 2011 I had on removed off my upper arm. I did not make my 5 years clear I guess. This time was a stage 0 but I have scar on my neck a few inches long now. It was spreading out. Waiting for results in 2 weeks from doc to confirm its clear. In 2011, Scar was 13 stitches long. Very black and crusty, Stage 2 I think no lymph nodes affected. They checked when they did the excision. I have tons of moles and black marks. I was told , they will have to watch me closely now with all the different marks on me. Kinda nervous now. Hoping there wont be a 3rd.

    • #8962
      Anonymous
      Inactive

      Moody123 – Sorry to hear you are going through your second melanoma. Keeping you in my thoughts and prayers. Let us know how the follow up goes.

    • #8966
      Anonymous
      Inactive

      Hi Nic,

      I am very sorry I missed answering you all this time and thanks for asking. As far as the desiese going I am well. 3 years stage IV and 28 months on treatment of Vemurafenib and Cobimetanib. I fight the side effects as well. I am mentally and physically completely drained.

    • #9380
      Anonymous
      Inactive

      I went for the follow up for my 2nd excision that was 3 weeks ago. The plastic surgeon said that she did not take enough of a margin around the melanoma as she did not know it was an evasive melanoma. She should have taken another .5 cm. according to the results. She said it was my call to re open the 3 inch incision and take more or leave the incision alone. I said leave it alone for now. I’m going to see my doctor for an extra opinion. I guess I’m a bit taken back by the way the results were laid out for me.

      • #9389
        Anonymous
        Inactive

        So sorry to hear. This must be frustrating for you.
        Once you see your doctor hopefully you will get some answers.

    • #16341
      Anonymous
      Inactive

      I haven’t checked in awhile. Scar for # 2 seems ok so far.
      2 days ago I had 2 brown black moles biopsied off my back shoulder area. Waiting results. Not liking this process anymore I must say. 🙁

    • #16368
      Annette CyrAnnette Cyr
      Participant

      You poor thing! You must be starting to feel like a patchwork quilt! But the good side of it is obviously they are watching you closely. Sounds like from prior posts that you have a ton of moles. Some people are just genetically predisposed to developing melanoma. Is there any family history?Certainly you sound higher risk. It is awful to have to go through and worry about all the moles, but the key is to catch and remove it early. No fun at all and waiting for results is agonising. Hopefully it will be nothing, but if it is, let’s hope it is like the others and caught early. Wishing you better results..

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