September 14, 2018 at 11:32 pm #18616
Recently (3 months ago) diagnosed stage 3b-
WLE x2, all clean margins.
9 nodes removed and 1+
First round of imaging showed little concern, recently underwent second round of imaging this past week….the waiting game now
Also, a Derm visit for 2x punch biopsy’s on “not likely” candidates but better safer now than wait.
Off to meet with Dr Butler for the second time, next week.
I decided Princess Margaret over Juravinski even though it is a longer distance to travel.
Therapy will be combined target drugs-Tanfilar and Mekinist,
although he did mention that he was thinking 2 or 3 steps ahead so this may change with my visit.
First thing, no sorries for my diagnosis please.
From the get go I decided to have a 30yr not a 5yr plan!
The past three months have been mentally draining although physically I am feeling great.
I have been on disability from work mostly to recover from surgery but also to keep mentally in tune and be selfish in “self caring” with diet, exercise, chiro, massage, mental support.
I love the good vibes this network sends (thank you Annette)
I PRAY for all people involved in cancer research and fundraising
I wish everyone strength, courage and a smile.
Even though days early in diagnosis are cloudy, reach out to family, faith and friends (near or far, old or new) to be the sunshine.
September 17, 2018 at 9:27 am #18622
You put it so eloquently Rob. SO much of coping with a diagnosis is the mental stress and waiting for results.Everyone responds differently, given their life circumstances and the type of support available and their needs. Taking time for self care will help the healing process and keep your head in the game going through treatment. Now is the time more than ever to give yourself permission to focus on you. Hoping your treatment goes well. If you can take the time to post for others as you are going through therapy – how you are doing, tips along the way – side effects – while different with everyone, there is a lot of commonality – all helps others who are trying to find their way through or are preparing for treatment. We all learn from each other! Wishing you the very best and thanks for sharing your insights.
October 13, 2018 at 12:18 am #18802
Great attitude Rob, don’t let it totally consume you. I was stage 3c ulcerated 9 yrs ago. Did the wide margin resection (2″ wide, 2″ deep and 11″ long) on my inner right thigh above the knee. Had the sentinel node removed (it came back clean). Next was the Interferon then localized radiation. The Interferon was the worst part as it was shutting my liver down and changed my personality in a bad way. I stopped the high dose infusions after 2 weeks and everything returned to normal in 2-3 days.
Stay positive my friend, my thoughts and prayers are with you!
I’ve been down that path and I’m still here…
November 16, 2018 at 5:41 pm #19369
I began treatment yesterday. 1 of …?
All scans thus far have revealed NED-I am going to continue this trend!
Bit of a scare with MRI x 3 of Liver but put that behind me with a swift kick!
Self care has been the priority and I am beginning to live with a diagnosis rather than living to beat the diagnosis. (been 6 months now)
I was extremely nervous before the infusion yesterday (it was mentally the toughest day yet- very trying time for me-but thankfully all family and friends were here to support)
Dr Butler is amazing and I highly suggest anyone to be referred to this amazing man.
The Bayshore clinic in Hamilton is where I chose t get infusions is great too (nurse Kath is amazing and brought a smile to all the patients I saw walk in)
Further to my self care natural treatment:
vitamin C-1000mgs a day (water-soluble)
vitamin D-5000IU daily (drops)
Multivite-Genestra brand (active multivitamin) 2X per day
Cucumin complex (cumin/black pepper) 2 pills a day (Genestra)
Orange essential oil (multiple drops daily) rub into my head
Frankincense essential oil or orange citrus (nightly in infuser) beside my bed
Stress away and Digize essential oils- on “those days” where I need some mental support
5KM walks few times a week and throwing light weights around in between, plus hockey once a week.
I woke up a bit stiff and groggy today but after a hearty breakfast I felt better, both physically and mentally, Probably the best in a long time!
I am beginning to see the monster in the rear view mirror fade further and further with each step I take.
I have posting my personal email (sorry if I cross the line-I tend not to read too much fine print anymore…insert smiley face)
I am avail for any questions should someone have.
November 29, 2018 at 7:17 am #19494
I am with you on the self care. I took disability from work early this time, prior to surgery to focus on the self care emotionally. Well not entirely emotionally, I have Lymphedema from the first go around in my left groin and leg which is being exacerbated by the recurrence as well as the stress. My job does not permit me to be off my feet so I permitted myself. Since first being diagnosed in 2010, I changed careers, have give presentations on my experience with Melanoma, spoke at of the Caregiver Conferences and become a peer-to-peer support volunteer. All of those things were self care, how I continued to rally against the diseases emotionally. My new venture this time, as I started to journal this time is I began a blog. I have only written two times so far but so many things come together in my mind that I find the process liberating.
I was wondering how are you getting your information about using essential oils, I would like to do a little research about using them myself.
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