December 6, 2018 at 12:04 pm #19555
I’m not sure if what I am going to say will help or scare but the one thing I have come to accept, over the last nine years of living with Melanoma, is, there is no cure but there is management. This is not necessarily a bad thing, there are hundreds of diseases that people live long, joyful and purposeful lives with. Diabetes, Chron’s, Rheumatoid Arthritis are just a couple. As new research and treatments flood the landscape Melanoma becomes more and more manageable. Accepting this idea of a “managed disease” helps keep you vigilant while you are in remission. It keeps you reading about new research and participating in the organisations encourage the research. The other thing it does is mentally prepare you for recurrence, which in the land of Melanoma, is a real possibility.
Once we join this club we are forced to decide how it will fit in our lives. This is just one of the ways I have learned to cope. I have many; Peer Support, forum participation, advocating against tanning and the newest, a blog. Our surgeons, oncologists, nurses and others in our health team can help us with the physical but we have to take the lead in the emotional aspect and this is how I have managed these nine years.
December 6, 2018 at 1:41 pm #19556
Such amazing insights Beth. And aligned with health care professionals thinking these days – for many, cancer will be more like a chronic disease and managed as such in the future. Some are and will be cured in the future, but there remains no way of predicting at present or know that for sure, you are cured. However, with some of the amazing results we are seeing in our patient population (just had a lovely email from a stage IV patient today that had tumours in her lungs and now is completely NED – no evidence o disease – after treatment with immunotherapy) so we hope the response is durable and permanent, but no one can say for sure. I think everyone hopes they will be as lucky and can at best be disease free, and at worse, have stable disease. We hope it for everyone as well. Thanks for your insights…
Annette – MNC
December 15, 2018 at 4:55 pm #19849
Great insight Beth.
I have a fairly recent melanoma diagnose in June of 2018, Stage 111a at this point after 2 lymph node surgeries and I have started immunotherapy mid November. Your words reinforce my thoughts when I reference my disease to others. I tell folks the melanoma is being managed and that I am and will always be stage 111a and that I will have to be ever vigilant for a recurrence. Sunscreen, long sleeve shirts, long pants, shades and my Tilley hat are the most important part of my wardrobe now. Oh and lest I forget, plenty of shade in the sunnier parts of the day.
This is just a healthier and safer way to deal with my illness, being aware that it could return and to be mindful.
Like you I have joined with other cancer patients in group, so we can learn to deal effectively with the stresses that go hand in hand with our respective cancers. There are programs and courses offered to help us and our caregivers better handle the psychological pressures that are part and parcel of this disease.
I am looking forward to participating in Peer to Peer once I have a few more infusions under my belt. I think we can all help or be a source of encouragement for people who have just been diagnosed.
I am also eternally grateful to my GP who did the initial biopsy that got this ball rolling. As she explained much later, she knew the mole was really bad and if she had just referred me to a cancer skin specialist I might have waited for 3 months and that she wouldn’t have been able to sleep at night.
Beth, you are right, we are the ones who have to take care of our emotional issues after the medical team has helped us physically and my wife and I would never have found out about the incredible amount of resources available if she had not seen the Brochure Stands at the Cross Cancer Center. It was at the Cross Cancer Clinic that we found out about MNC.
Now I wonder if organizations such as MNC would consider sending mass emails to all physicians in Canada to alert them about the information such as Peer to Peer, forum participation, counseling, etc available to their patients and the importance of getting this out to the patients so they can start the emotional preparation that is needed, as they begin their journey with cancer.
The only advice we received from one skin specialist immediately after the initial diagnosis in June, was that melanoma was going to be an emotional roller coaster, boy was he right!
Once I got into the Cross Cancer Center in early November the information and brochures were everywhere. In my orientation pamphlet at the Cross was the MNC booklet, “Melanoma What you need to know”. Great booklet and great accompanying brochure. We are glad it was there for us.
In closing I want to thank The Melanoma Network of Canada for all they do for us.
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