Stage 3 Melanoma and oncology

2 minute read time.
Not blogged before, but felt I needed to get this off my chest, or vomit, one of the two, so I'm going for the less stressful option. Had my first real oncology appointment today, the previous two having been to discuss the clinical trial that I've been entered into, and on which I've received the "observation" arm and not the trial drug. I was early for my appointment, which was probably the first of morning outpatients, handed my letter in and was told to wait.. as you do! I then heard the nurses mutter thoses immortal word "Jackie Marshall?" (for those not in the know - that's me!)"She's not on the list". Much faffing about ensued whilst they tried to discover who I was and why I was there. Eventually a small boy masquerading as a doctor called me through. He asked me how I had been doing, "fine, I guess" I replied. I'm English! What else am I going to say? And I've never had stage 3 melanoma before, so I don't quite know how I'm supposed to be feeling, or what I'm supposed to say, perhaps some open questions from him might have been useful! Small child then proceeded to give me a cursory examination, feeling the lymph nodes in my groin.. eh up.. haven't I just had all of one side's removed, what's he expecting to find there? And the nodes in my neck... hmmm... aren't there just a few more sites in between? He also palpated the area where my liver is, but hey sonny, it's a lot deeper inside than that! And he listened to my chest before pronoucing me well and asking whether I had any questions. Yes, I did.. loads... but I left my list at home! I asked what I should do if I discovered any more suspicious moles as I have a couple I don't like the look of. He looked at them and said they were fine, I wondered how the feck he knew since my dermatologist can't identify melanoma just by looking it and he must have at least 40 years experience over the boy oncologist! Conversation was difficult, since English wasn't the doctor's first language and I only know how to count to 10 in Mandarin, so I didn't bother trying to recall the other questions I had prepared, the answers to which weren't crucial, just things I had never previously asked like how deep was my original melanoma, whether it was invasive, how many nodes had I had removed (all is all I know!), why there is no drug regime for treating melanoma, why do people in the US get interferon and we don't.. I don't care if it doesn't work just give a me straw to clutch at. He then asked when I was supposed to be seen again and I told him 6 weeks. Good job one of us was paying attention to the protocol of the clinical trial. I made my appointment and left. I started crying over coffee in the cafe waiting for Chris to pick me up and I'm still doing it now. I don't know why, I don't know if I'm sad, frustrated, annoyed, hopeless, disappointed, scared or all of those. I don't know if it's worth being on this clinical trial or whether I should bail and go back to my dermatologist, at least I have confidence in him and his team. Maybe I'll speak to the trials nurse, when I've calmed down. There, I've vented my spleen... but I still feel sick...
Anonymous
  • FormerMember
    FormerMember

    Hi Marsha honey

    What a frustrating day for you. I know what you mean about the doctors looking about 12 these days. And they don't get sensitivity training either. For them its just a job, for us it our very lives, and we are allowed to panic sometimes.

    I find keeping a blog a good way to get my thoughts in order - plus lots of lovely people send nice replies (sorry - you got me). So any time you get frustrated, just put it in writing, I hope you feel better afterwards.

    Half a hug to you (the other half should be available in a week or so)

    Sharry xxx

  • FormerMember
    FormerMember

    I'm gonna ring you instead - just warn you so you can put that phone off the hook!   They are a load of ****s.  I can just imagine it all.  I want to punch that juvenile ****.  Right, enough ****ing, and I'm going to ring you.  xxxx  HHHHHHHUUUUUUUUUGGGGGGGGSSSSSSS  xxxx Penny

  • FormerMember
    FormerMember

    Tried to ring you, but couldn't get through.  Just wanted you to know that I am thinking of you and how you must feel at this time.  xxx Penny

  • FormerMember
    FormerMember

    Hiya Marsha - that was a horrible experience for you. Do you have a doctor in charge of the trial - I say he/she needs a kick up the b*m for this. How do they expect people to help then with trials if this is how they treat them? Especially when you are already on the observation part of trial. PAH. Dont know how I can help you except with solidarity and support. You are brilliant and did and do not deserve to be treated in this way by anyone. Give yourself a big consolation treat if you can - large cream cake deserved at the very least! Hugs Jools x x x x x x x x  x