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Catching Up

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I haven't been on in months. I was logging in today to try and catch up. So sad to find out I can't catch up. I don't know what all happened since I was on. Is there any way somebody who has been keeping up can post a summary or something? There are so many people I was wanting to check on that I'm concerned with and now I can't. This is really sad since some of them may be gone or really ill and I won't know it.

I'm very bummed by this.

I've been using the Facebook groups a lot but it's not the same as here. There are so many people there and it's hard to keep track of people's stories and who is what. This forum is so important. I hope they get a good backup plan in place. This should have never happened.

Sorry I haven't been around. My son decided to move to DC end of December and I was helping them take care of their house and trying to see my granddaughter as often as I could before they left. I also visited them there. On top of that working full time. It's just been a blur. And I've been sick too.

But I did have scans 3 weeks ago that were good. On the other hand I've been having nausea and extreme fatigue for 3 weeks (and also a cold that won't go away) and that has been making me nervous. I hope it's just my weight and lack of exercise. Planning to work on that. I had lost 30 pounds last year, but then I got shingles and plantars fascitis and didn't exercise and eat right and put the weight back on quickly.

I'm glad this place is still here. I hope I can catch up on what I missed somehow.

Todd

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Sorry. I'm not even sure when I was on last. If we've lost anybody, could you please post about that? I know we've had a few people really having a hard time.

Wishing you all the best,

Todd

eug91's picture
eug91
Posts: 44
Joined: Jan 2019

In December, I got diagnosed, joined this board, got nephed, and obsessively read and re-read posts. So I guess I'm as good as any person to try to remember some of the posts we lost. from what I can recall-

A couple of folks like me joined the club. Fox checked in to say hi and inspire us. MarkDavid18 had a really scary experience, but is pushing through and kicking butt. A few people had NEDs and passed milestones (like icemantoo and Jan4You and donna_lee). A few people had setbacks, but are still here posting or have moved over to smartpatients. 

As for those we lost, I'm trying to remember her name, but a woman came on to let us know her husband passed in early December. She came back a few times later to share general advice, which struck me as really strong and generous. 

Maybe my favorite posts were from idontknowanymore. She had previously shared that she was having a really tough time. Well in January she had her neph and cruised through it like a champ. By the end of the month, she was posting great advice to others about her experience. Bummed that her posts were lost, but super inspired by her positive attitude. 

It's sad that we lost three months of posts, but what i remember most is just how supportive and helpful everyone was when I first joined - and how confused and overwhelmed me turned into positive and forward-thinking me. Glad to hear you're well - hope we'll be part of this community for a long time to come.

 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Appreciate the update. I've had so many bouts in the past 6 years with strange symptoms that turned out to be nothing, that these days I wait and see. My oncologist is a 1-2 hour drive each way and anything that is more general health related, he says to see my GP. My GP knows absolutely nothing about this kind of cancer (really not a lot about cancer in general I found out once I got cancer and started reading about it). He's also a good 40 minutes to 1 hour away (that's southern California traffic for you), so these days unless it's really bad I just wait and see. I see my oncologist every 3 months for scans and blood tests and I see my nephrologist every 4 months or so for all of her blood tests to check my kidneys.

Glad to be back on here. I miss being here, but I also get more obsessive about my health when I'm on here too much. I have 3 new Facebook groups I'm on and I notice my health anxiety sky rockets when I read and post too much to those groups.

I started a new BP medication about the time I started feeling tired and nauseous. I'm suspicious it might be that. Will try a little longer and if it doesn't get better I will consider stopping it and trying another. Really what I need to do is lose weight and start exercising again regularly.

Best,

Todd

JoeyZ's picture
JoeyZ
Posts: 186
Joined: Mar 2018

Hi Todd, It is nice to see you again. We all get it, life goes on - as it should. Sounds like you've been busy, but a good type of busy with kids and grands!! Always precious time with them. 

Your symptoms are worrisome. Have you seen a doc about it? Sure hope it's just part of a lingering bug and nothing else.  

Eug summed things up pretty good. I haven't been spending a lot of time here, either. I was here and on Smart Patients a whole lot, what I think was an unhealthy amount of time. So I cut back a lot. Doing other things that keep me more grounded in reality. Or keep me not obsessing about cancer, that is. There is a fine balancing act to that.

I can't think of anything else. Last several times I was here, this place just hasn't been real active.

Maybe we could get everyone (including me) to update their profiles, so then we can catch up better. I'd like that.

Nice to see you both here, Todd and Eug. I'll pop in a bit more often.

Take care and keep us posted on your bug and I hope that's all it is!!

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Read your profile. Wow! You went through a lot. I'm glad you have your profile so detailed. Are you getting treated for your mets out of Portland? How do you handle travelling back and forth? Do you have a local doc you see that talks to the Portland docs? Do you think the RCC oncologist you're seeing (I assum you are) in Portland is doing a good job?

I've been interested in moving to Portland and did a little research into the docs there. In the end I decided I wasn't sure enough about the care to move there. Not because it's bad, but just because it's hard to know. I have such great access here in southern California. We have a lot of docs specializing in RCC in LA.

How have you been doing on the drugs you're on? Is it helping? How are the side effects?

Best to you,

Todd

jazzgirl's picture
jazzgirl
Posts: 104
Joined: Nov 2017

I agree please get the symptoms checked out.  I also identify with the weight and exercise issue and will take you along mentally when I walk!  Good to hear from you and others.  Take care 

PS I can't find my previous photo with the trumpet at the moment so will use this one for a while.  Wehavenotimeatall may (?) recognize the location...

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I can use the support! It's been raining and raining and raining this winter. Making me want to stay in  and even stay in bed!

Todd

Wehavenotimeatall
Posts: 460
Joined: Aug 2017

wild and beautifullul it is

 

you could  spends months just switching off there 

did you eat in there... fresh fish and chips.. or fries to you

we Love the yanks especially when they are visiting 

lovely ppeople .. although some of them are very loud

would love be to see the rest of the pics    It’s a shame

Annie

 

 

penitent
Posts: 77
Joined: Jun 2016

We'll be visiting Ireland and attending a wedding in Durrow, Co. Laois in late June and looking very forward to visiting my wife's roots in Kerry again.  Are you living in Carlow then?

Penitent

jazzgirl's picture
jazzgirl
Posts: 104
Joined: Nov 2017

Profile photo is outside of O'Donohue's in Fanore, County Clare, where my wife and I spent two lovely weeks in  a cottage just over a year ago. Everything you said about Carlow fits this place as well.  We rate fish and chips everywhere we go, and O'Donohue's is handsdown the international winner.  Now you have me wanting to explore Carlow as well!  Take care.  PS Penitent have a great time at the wedding!

APny's picture
APny
Posts: 1827
Joined: Mar 2014

Hi Todd, great to "see" you! Glad scans were good but yes, do check with your GP about the fatigue and nausea. Hope it resolves itself and you feel well soon.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I started lisinopril about the time I started having that (I was already having a cold). It might be the medicine. Tiredness and nausea are listed as common side effects, but my nephrologist said she'd be suprised if that's what it is. I'm going to take it awhile longer and see if it goes away. If not, I'm going to take a break for a week or two and see if it goes away. I did just have scans that were clean so assuming it's not cancer.

Todd

Allochka's picture
Allochka
Posts: 808
Joined: Nov 2014

Hi Todd, glad to hear you! Congrats on NED!

BTW, I had mild nausea for about 2-3 weeks recently. Considered going to family doc, but then it just went away overnight. Have no idea what it was. Maube some very minor stomach bug.

My husband had severe fatique. Of course I already decided that his cancer or Hep C have come back, but it turned out his vitamin D was very low. He started taking it and felt a huge improvement. Maube smth to check out, if you live in area which tends to be grey and cloude during autumn and winter

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I take supplements and it's one of the things my nephrologist checks out every scan. Mine is actually pretty high right now. I knew Abunai was very ill. I'm so sorry to hear that news.

Todd

Allochka's picture
Allochka
Posts: 808
Joined: Nov 2014

Do you know about Abunai’s passing?

BoondockSaint's picture
BoondockSaint
Posts: 227
Joined: Mar 2017

Welcome back Todd. Glad to hear you are doing well for the most part. 

You are..... and always have been a great contributor 

 

 

Jan4you's picture
Jan4you
Posts: 1275
Joined: Oct 2013

Well, Todd, you sure know how to make an entrance! Kidding

Yes, must be weired to return and have all the posts in the past, gone. 

Bet you were most worried about FoxHD, right? Its hard for him to type, think with his brain mets

but he's still hanging in and reads our posts often. 

I am sorry you have not been feeling well. But don't start worrying or you'll body will get all negative too. 

Count your blessings and come here to vent ok hon?

Its always a pleasure to see you back! 

Now don't stay away too long ok?

Sending you Healings Hugs, 

Jan

 

Allochka's picture
Allochka
Posts: 808
Joined: Nov 2014

Yes, rest in peace, Abunai... it happened in November. His wife had let us know

stub1969's picture
stub1969
Posts: 712
Joined: Jul 2016

It's always good to see you, Todd.  My brother-in-law lived just outside of Seattle for a few years and really struggled with the rain there, so he moved back to the midwest(I'm sure like you are dealing with in California).  After our record setting low temperatures last week here in the midwest, I think he would have traded some rain for the extreme cold we had.

Take care,

Stub 

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