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Viewing 15 posts - 1 through 15 (of 22 total)
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  • in reply to: Newly diagnosed #67365
    Rojam
    Participant

    hi laura,

    been thinking about you and its wonderful to hear your good news!

    i hope you have a speedy recovery from this now both physically and mentally.

    stay in touch

    take care

    jane

    in reply to: Newly diagnosed #67361
    Rojam
    Participant

    hi laura,

    yes lovely time away with family and friends thankyou.

    glad to hear things are moving along for you. i really do hope the nhs decides in your favour and you get your slnb and wle done soon.

    please be a ‘squeaky wheel’ if you dont get an appointment through soon. please keep us posted.

    take care

    jane

    in reply to: Newly diagnosed #67359
    Rojam
    Participant

    hi laura,

    im so sorry for my late reply, ive just got back from being abroad for nine nights.

    have you been seen at St Georges yet? if not is your appointment soon?

    kind regards

    jane

    in reply to: Newly diagnosed #67357
    Rojam
    Participant

    hi laura,

    im sorry, it sounds like youre having a rough time at the moment :(

    i dont really understand, are they saying the NHS has stopped funding slnb all together or just at that hospital/area cos theyve run out of money to fund it? if so have you asked if you can be referred out of area?

    have you tried ringing around the big hospitals/teaching hospitals near you or in london and tried speaking to the derm depts or macmillan support nurses there to see what they currently offer?

    i know it might seem overwhelming but if you would rather get the slnb done then unfortunately it seems only you can try and ensure you get it. i live in herts. my local hospital wasnt very good. they removed my melanoma but i then got myself referred to the barts and the london for my wle and initial follow ups and then after discussion with my consultant opted for continued care/check up etc at addenbrokes in cambridge. i needed to do that for my peace of mind to ensure i got the best treatment i could.

    keep your chin up. its an awful time and at the moment you’ll probably feel a bit out of control and like you have no proper plan moving forward. ive tried looking at the current guidelines for you but they seem pretty vague since the 2010 update. im sure youre entitled to a second opinion, maybe ring macmillan support line to see if they can offer you further advice on where to get this or whether you can appeal the decision already made.

    please keep in touch & take care

    jane

    in reply to: Newly diagnosed #67354
    Rojam
    Participant

    hi laura,

    sorry to hear your news. hope youre doing ok?

    you said you live in the uk. do you live in england?

    just wondering who is blocking your slnb? is it your gp or your hospital?

    my local hospital didnt deal with my melanoma very well and so i did some research, picked a couple of specialist melanoma nhs hospitals, went to my gp who looked at waiting times etc and asked for a referral there. im sure it was under the patient pathway where you can choose where you are seen. i was seen within a week. its the nice gudelines but im not sure how this works outside of england.

    as you probably know the slnb is only an indicator but if youre entitled to it under the nhs and you want it then you should get it done.

    i hope you manage to get seen at a good hospital.

    take care

    jane

    in reply to: Pathology Report/Diagnosis Questions #66938
    Rojam
    Participant

    hi lee,

    having read your post i wanted to comment as so much of what you say is how i used to feel.

    please find below my post from 2013. this was how i felt three years after my diagnosis.

    i also waited nearly two years before i asked for catherines opinion on my path report. for me it was what i needed to do to put my anxiety to bed and take back control of my life.

    its nearly five years now since i was diagnosed and so applying sunscreen, wearing clothes that cover me up, seeking shade, working my days activities around the sun, skin checks etc etc etc are all automatic to me, its just who i now am. this means i finally have days where melanoma doesnt even enter my thoughts. its taken me a while to get here and i know we are all different but im sure you will get to this point too.

    kind regards

    jane

    Re: Physiological consequences of melanoma

    by Rojam » 19 Aug 2013 03:04

    hi,

    not sure if it will help but ill give you an insight into how i felt with my diagonisis.

    i was diagonised as originally 1b then changed a year later to 1a nearly three years ago.

    not a day goes by when i dont think about it. in the early days it was 24 hours per day now its just fleeting thoughts.

    for me i struggled with 1) will the original melanoma return suddenly in my organs. 2) are any of my hundreds of other moles also melanoma.

    my love in life apart from my husband and three kids is my horse totti. therefore i spend a lot of time outside and always feel like i am sun dodging and consistently reminded of my melanoma. i felt theres no escape from thinking about it.

    i really struggled with not being comfortable in the sun anymore. i stupidly used to love the sun but just didnt give it the respect it deserves.

    i found it hard that in the uk most people see melanoma as just a minor problem that you cut off and then youre cured. i didnt feel think anyone understood me. thankfully i then found this site, catherine and all the great people on here giving me great support and comfort.

    I felt my sense of humour had been wiped from me and my whole identity had changed. I’m not the carefree person I was but I am now happy with the new me.

    Someone on here once said its a diagnosis not a life sentence and that really stuck and helped me focus on moving on.

    looking back though i still wished id asked for counselling after my diagnosis and maybe told my gp how i was feeling with the view of going on short term anti anxiety meds.

    at the beginning i found it mental torture, like white noise. i was panicking about my kids, id wake feeling my lymph nodes in the middle of the night. id go into the changing rooms in shops to try clothes on and stay in there distracted by checking my moles in the mirrors (under different lights) for ages etc etc etc. but time is the biggest healer and it really does get better with time. i still have wobbles but i now only allow myself so much time thinking about it and then make myself move on. I am now in control of myself and never scan the Internet for information. I only use this site.

    i also now realise that although i was unlucky getting melanoma i was very lucky i caught it myself on the base of the back of my neck so early. i now believe the statistics that i am very unlikely to have to deal with my 1a ever again.

    i also feel if i can catch it there, then i can catch it anywhere and am confident i will spot anything that changes with the help of my photos i have had done.

    i am at last comfortable in my own moley skin again now, ive adjusted my life to fit the sun and will not let myself be consumed with what ifs. lifes to precious to miss out on

    your relative is lucky to have you.

    warm wishes

    jane

    Rojam

    Posts: 17

    Joined: 22 Oct 2012 11:14

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    in reply to: Melanoma Stage 1b & breast cysts? #63963
    Rojam
    Participant

    hi joanie,

    i too had a breast lump not long after my melanoma diagnosis. my melanoma was on my back at the base of my neck.

    my lump turned out to be a cyst which was drained and so far not returned.

    i hope all your results come back clear and quickly for you.

    kind regards

    jane

    x

    in reply to: Trouble with Monthly Skin Exams #63901
    Rojam
    Participant

    hi trish,

    sorry youre feeling like this.

    could your husband take a couple of photos of your back each month so you can sit and compare them with your original photos? at least until you can find someone to help you?

    my problem area is mainly my back too. it used to cause me much anxiety that i couldnt physically look for myself. now i use mirrors and photos. my husband looks too if i ask but i want to look for myself… just in case!

    kind regards

    jane

    x

    in reply to: concerned to confused… Learn to ask questions #63637
    Rojam
    Participant

    hi brussels,

    your melanoma is similar to my 0.25 mm three years ago.

    i would query the Margins – lateral – present on your report. im not really sure what they mean by this and id want to check that margin is definitely clear, especially if you decide on no further treatment.

    even if both your deep and lateral are clear i would still have the WLE done. its great youre so positive but please give this some more thought. WLE are recommended for melanoma for a reason after all.

    after the WLE, you shouldnt have to deal with this again as all your factors are very low risk.

    just be really careful about your sun exposure and keep a close eye on your skin. i had some good photos of my other moles done and compare them to my skin every four months.

    kind regards

    rojam

    in reply to: Psychological consequences of melanoma #62234
    Rojam
    Participant

    hi,

    just to add to the mix that i had six more moles removed in the year following diagnosis.

    the five i picked were all mildly dysplastic the one the derm choose was a completely normal benign mole!

    i also presented to my gp in the first instance with my melanoma and caught it at 0.25 mm.

    i found the constant derm appointments, mole removal, healing time and waiting for results really stressful and although i felt a bit like i was all alone, it was also a relief to be discharged from checkups.

    myself and my derm said the important thing with all my funny moles was to watch for change. i couldnt possibly have them all cut off.

    my biggest stress is that my main mole concentration and melanoma is on my back. just where i cant check them properly myself.

    now every three months or before if i wobble i get my husband to take a photo of them and i check them against my derm photos.

    its the system that works for me. its the system that stopped my mental angst. it stopped me from going from round and round on the what if roundbout and allowed me to step off it, say enoughs enough, keep vigilant but learn to enjoy life again.

    it does affect everyone differently and i guess everyones system will be different. its working out what best for you whilst staying safe.

    jane

    x

    in reply to: Psychological consequences of melanoma #62222
    Rojam
    Participant

    hi,

    not sure if it will help but ill give you an insight into how i felt with my diagonisis.

    i was diagonised as originally 1b then changed a year later to 1a nearly three years ago.

    not a day goes by when i dont think about it. in the early days it was 24 hours per day now its just fleeting thoughts.

    for me i struggled with 1) will the original melanoma return suddenly in my organs. 2) are any of my hundreds of other moles also melanoma.

    my love in life apart from my husband and three kids is my horse totti. therefore i spend a lot of time outside and always feel like i am sun dodging and consistently reminded of my melanoma. i felt theres no escape from thinking about it.

    i really struggled with not being comfortable in the sun anymore. i stupidly used to love the sun but just didnt give it the respect it deserves.

    i found it hard that in the uk most people see melanoma as just a minor problem that you cut off and then youre cured. i didnt feel think anyone understood me. thankfully i then found this site, catherine and all the great people on here giving me great support and comfort.

    I felt my sense of humour had been wiped from me and my whole identity had changed. I’m not the carefree person I was but I am now happy with the new me.

    Someone on here once said its a diagnosis not a life sentence and that really stuck and helped me focus on moving on.

    looking back though i still wished id asked for counselling after my diagnosis and maybe told my gp how i was feeling with the view of going on short term anti anxiety meds.

    at the beginning i found it mental torture, like white noise. i was panicking about my kids, id wake feeling my lymph nodes in the middle of the night. id go into the changing rooms in shops to try clothes on and stay in there distracted by checking my moles in the mirrors (under different lights) for ages etc etc etc. but time is the biggest healer and it really does get better with time. i still have wobbles but i now only allow myself so much time thinking about it and then make myself move on. I am now in control of myself and never scan the Internet for information. I only use this site.

    i also now realise that although i was unlucky getting melanoma i was very lucky i caught it myself on the base of the back of my neck so early. i now believe the statistics that i am very unlikely to have to deal with my 1a ever again.

    i also feel if i can catch it there, then i can catch it anywhere and am confident i will spot anything that changes with the help of my photos i have had done.

    i am at last comfortable in my own moley skin again now, ive adjusted my life to fit the sun and will not let myself be consumed with what ifs. lifes to precious to miss out on

    your relative is lucky to have you.

    warm wishes

    jane

    in reply to: facial sunspots #62019
    Rojam
    Participant

    hiya,

    ive started to get them on my hands now. just turned 44. i must be getting old!

    in reply to: new mass in breast #61583
    Rojam
    Participant

    Great news. Hope you recover from the surgery quickly xx

    in reply to: Can we donate blood? #61740
    Rojam
    Participant

    Regarding giving blood, I don’t think the risk is too great,I just I think it’s an unnecessary risk. I’m sure if there was a blood crisis the restrictions on who can give would be reconsidered.

    in reply to: Can we donate blood? #61737
    Rojam
    Participant

    Hi,

    Yes, i see that written too. Honestly though at what timescale are we ‘cured’? We all know the percentages but we all know there’s a very very small risk it could come back after many many years.

    I guess if there’s enough blood available then they shouldn’t use ours. Why risk it.

Viewing 15 posts - 1 through 15 (of 22 total)