So. Setbacks are frustrating. But a part of life.
Last night while taking a shower I noticed a scaly patch of skin where my main bad spot had been previously. That area had been clear the last 15 months, but there's now a definite spot about the size of a quarter popping up there again. Given how bad it was previously and that it's in the same area, I'm more nervous about it than any other little spots that have popped up here and there.
It's frustrating. Mostly because I had really been enjoying being completely clear.
Hello. I am a 35 year ol woman (mother of two) form Finland, and I got the same diagnosis 1,5 years ago. I went through UVB treatment last winter. It helped quite well, but now the patches are already coming back, and I´m scared. I also had a misscarriage about 3 weeks ago and later on I found out that it was a partial molar pregnancy. That meens that I have to go to lab.tests every week and there´s also a (small) risk that I need chemotherapy for that. And on top of all this my 4-year-old daughter was 2 weeks ago diagnosed with rheumatoid arthritis. My life seems to be constant struggling and almost daily visiting the hospital.
ReplyDeleteI was wondering how is your situation now, because you wrote that your patches are also coming back now. Are you having any treatments now? I think I´ll start a new UVB treatment within a month or so.
How are you coping with the constant fear of the disease? I´m not doing so good with that... Sometimes I feel like drowning because of all the worries and sorrow and fear. :(
Hello,
DeleteIt sounds to me that the MF would be the last thing I would be worrying about. Yes, you should go back to UVB but that's not a huge deal in the grand scheme of things. I can't imagine how hard it would be to have all of this going on at the exact same time, particularly the miscarriage. I was trying to get pregnant for awhile and it didn't happen which was devastating enough.
As far as your spots, it sounds like you only did UVB treatments for a few months. I've found that it takes a longer time to get better results. After about 4 months I tried to stop and the spots came back almost immediately. It took 15 months of treatment before I was really clear. I stayed completely clear for just over a year. My spots have started coming back, but even now a couple months later they are still dime sized and I have about 5 or 6 of them clustered in the area where it was the worst before treatment. For me, I don't think I am at the point where I want to start treatment up again, mostly because the spots seemed to have stabilized and have not gotten bigger or changed in the last few months. If they do get bigger or more of them I'll start UVB treatment up right away.
The way I see it is that we're running a marathon that we don't want to win. Treatment helps us get moved back to the starting line, but we will always be moving forward in the race. The hope is that we are moving slowly enough and have enough resets (treatment clearing us up) that the marathon takes us a full lifetime to finish.
I've stopped thinking about worst case scenarios and what could happen, that is how I deal with the fear of the disease. It took me quite awhile to realize that I didn't die from it yesterday, I'm not going to die from it tomorrow, and this is in no way related to the MUCH scarier cancers that are fast moving.
It is really important to figure out a way to handle the stress. It is stress that gives me flareups and the spots come back. It's impossible to take the stress out of your life, particular if you have a child that is dealing with their own disease that they shouldn't have to deal with. It's all about how you handle the stress though. Like I said before, thinking of the grand scheme of things, this disease is nothing like pancreatic or other more serious cancers. It's more like a thing you'll have to keep an eye out for and occasionally get treatment for. I'll also state that I have stage 1 and it sounds to me like you are also stage 1. The story is of course different if you're stage 4 but even then, it's not like pancreatic cancer.
If you have any other questions, please feel free to let me know. I wish you and your family all the best.