Babs272 cancer back again

babs272

I was first diagnosed in Jan 2020, so I have not be'en here for a few years. Now, I am back. My ca125 tested this month went way up from last Nov. I have had all kinds of issues for almost a year. So many tests done. All started with bleeding  that lasted all day. Twice this has happened, over a few months apart. Back aches. The Drs said it was my kidneys and it came up nothing. I do have a spot on kidney but they say its nothing. My theory is, I had a cysts that ruptured on my kidney, and that caused the pain and bleeding. I did have a very bad infection and was put on strong antibiotics 2 times a day for 10 days.
Now, I deal with sweats and burning pain , feels like my body is on fire. Anyone else experience anything similar? Would like to hear from you.
Now I am waiting for the oncologists and another scan for the next plan of action.
This was not suppose to happen to me. Life is the S----.

Strongwoman

@babs272
  Oh what a place to be. Angry would be one I imagine. I feel for you and many of us have been in your place. It hurts, it sucks, it is maddening, it feels "unfair".  All normal reactions to your post and what you are going through.
  I am not going through everything you are currently going through. Do you have HGSC or LGSC?   When was your last CT scan done?  I have sweats but they are surgically induced menopause symptoms and my medication (Letrozole) worsens them a bit. Pain I have since surgery and mainly left flank pain but more recently right as well which is from my hydronephrosis (right is worse so left is doing all the work). Are you on any preventative or maintenance medication? When is your next Oncology appt?
  Waiting is tough and our minds can take us many places. Try your best to stay in the present and enjoy what you can. Live day by day and reach out for external help if you need it.  Here is a start but also get in touch with Wellspring if you need more. They have many resources and are very helpful.
 My thoughts are with you and will be here should you need to say more or vent more.

babs272

My recent scans were for other reasons. No one was looking for cancer then.The blood work I just had done, was enough to know there is cancer.I am just waiting for the appointment for the scan for this one. It may take another month before I get it done to find out where it is and how much.I should have gone on maintenance drug, Zujula in Nov 2021. I refuse it after I was accepted for it. Now, I wish I tried it. I am 68 years old and the burning sweating pains are the worse.

Strongwoman

@babs272
  You are in pain. May I suggest you speaking with your doctor to see if you can find a way to manage the pain until you have your appt with the Oncologist? Or if you are on something and it's not being effective enough letting them know?
 We can all say should have, could have, would have. We can't turn back the clock only go forward. We make decisions based on where we were then emotionally, mentally and physically. We can beat ourselves up if we think "if only should have". Try to find peace in that it is now being investigated and a plan will unfold. In thr meantime, getting your pain under control will help your mind.
I hope some of these words help you.

babs272

 I am on Lyrica and Celexa just recently started.It has done nothing for my sweats at night. I will increase the Lyrica to see if that helps. I also have Fibromyalgia. So my nerve pain just got worse from chemo treatments. Carbo/taxol does alot of damage to the body.

Strongwoman

@babs272
 Yes, chemo can do a lot to one's body. Some ladies have few side effects and others have more and long lasting effects. No rhyme or reason to it.
 To my knowledge, I don't believe those drugs would assist with the sweats but do they help with pain? Maybe contacting your doctor before increasing it would be wise and to see if they have any other solutions?  Having fibromyalgia prior to this would cause a wrinkle in things for sure.
  Keep us posted.
Take care

Strongwoman

@babs272
  How are you doing?  

babs272

I am doing ok. Waiting for oncologists to call. Dealing with the headaches from increasing Lyrica. Dr wanted me to start 2 lyrica from the start. I choose to start 1 for a week before increasing.
Are you a medical profession?

Strongwoman

@babs272
 In answer to your question, no it was recommended that I discontinue working last June and 'enjoy life.'  It was a difficult decision to make and would have been 30 years this past Nov if I did not retire before then. I gave back my license as well as the reality is that I will not return to working. I was a very dedicated and empathetic massage therapist who often put my clients needs over my own. Some may think it was dumb or I shouldn't have but I enjoy helping people and why I got into the profession when I did.  I also did certifications in Mental Health Aid for Adults  Seniors and Kids as well as A.S.I.S.T and ASK.  
  I enjoy assisting in this forum and was honored when I was asked to be a peer support. 
  I am currently doing a lot of reading on dying and grief by raiding the Hospice library when I attend my group weekly.
  I am 51 and have LGSC that is acting aggressively. I am doing my best to prolong getting a nephrostomy but it may be in my very near future. I have things to discuss with my new Med Onc this Thursday and then with my Palliative doctor on Saturday.
 Although I don't have HGSC, I read all the posts the ladies put up so I can educate myself on it and what I don't know, I go looking for. 
 If nothing else I have learned through this,  is that it takes a team to get through this both medically and personally. Your journey is your own and how you navigate it. Introducing/taking away meds or changing them in any way should always be discussed with your medical team. Even if it is new information, it is surprising sometimes to hear what they have to say and I say that in a positive manner not negative. 
 My goal for this forum is to 'normalize' dying and know it is a grieving process for all involved. Too often it is this hush hush thing and not to be discussed. There are too many things to do (if you can) before you die or have been told to 'enjoy life' both legally and leaving any legacies. The latter can also fulfill your days in a positive manner. It can also be very healing in ways and/or open up conversations with your friends or family.
 Anyways, long winded and hope that answers your question.

babs272

Thankyou for that. You are a very honst person. I am scheduled for a MRI in about 3 weeks.Yes, is there somewhere..I have had alot of scans over the past 6-9 months , mostly dealing with thyroid and kidneys. At 68, almost 69 I feel as though I do not have the energyu to go thru chemo again but, if thats the route I need to take, I have to give it a shot again. I have 7 Grandkids I want to be around for. They keep me young and busy. Ages 3 to 11.
I also booked a mammogram at end of month, since I am dues in MArch.


.

babs272

Felt good all day yesterday. Today some stress had me thinking again. Waiting for MRI call for appt. Grandkids staying Sat night, so it takes my mind away for awhile and to focus on them. Grandkids are the best!!! 11 and 8 yr old this weekend.

Strongwoman

@babs272
 Stress or anxiety can get the best of us so you are not alone there. 💕
  Yes, I have heard grandchildren are awesome. They will definitely help you keep your mind elsewhere.  Anything you have planned specifically when they come over?
  I tend to clean or something else mind numbing when I am like that.  I feel at times that I am almost in that 'nesting' mode that you go through before you birth a child.
  Today my son helped me clean the house and then he left to go to the gf's and I came home and watched Pride and Prejudice.

babs272

I think my grand daughter wants to bake,I love to bake.Grandson wants to learn to sew but I don;t think that going to happen yet. He wants me to make pants (red) for him.We willprbally bake and play UNO if we can't take the little dog for a walk. Its be,en raining alot these few days.And, I have to make mac and cheese from scratch. No one makes it as good as Nana's.LOL They will keep me busy.
Nice to have an older son that helps clean the house. Thats a big help. HAve a great day

Strongwoman

@babs272
  I love baking too.  Sewing eh? That is awesome that he wants to learn.  Challenging I think to have the patience to teach though...good for you.
 There is another game called Phase 10 or Exploding Kittens that is a card game. We have played the latter with my kids and my elderly Aunt. 
  Taught the same son how to make the homemade mac'n'cheese last week.
Yes, it's nice they can help out. He's in between jobs so I taking advantage of having him here. 
  Enjoy your time together.🤗

babs272

Still waiting for MRI. Mammogram on Tuesday. This waiting game is getting to me. Takes so long.

Strongwoman

@babs272
  How you doing gal?  The waiting game can get to the best of us.  Have you utilized any of your outlets to let some of this go?  I enjoy writing and reading right now for my escapes. If I am truly bothered by something, I clean like I am nesting and that seems to occupy my brain for awhile.
  Any plans for the weekend?

babs272

Good to hear from you.I finally had my MRI on Wed.They had a cancellation, so I took it. Results next week. I am starting to feel , not too great. Taking ativan  0.5 twice in a day, along with my celexa and Lyrica. My nephew is coming today to stay a few nights before he heads back home to China.He is here to visit my mother, his grandma in the home.
Maybe I am under more stress than the usual. But, I will try hard to enjoy the visit . May not see him for another 4 years.LOL 
I am reading alot of info on the site. Alot of us have recurrence of cancer. I feel like this time its a big one to deal with.
I did manage to crochet a few hats, actually 5 this past week. Trying to keep my mind occupied. I hope you have a great weekend.

Strongwoman

@babs272
 Hope you are enjoying the visit with your nephew. Different conversations than what you are used to daily when someone is "new" around.
  Chilling this weekend. Went for breakfast with hubby this morning and I can't tell you the last time we remember doing that. Incredible how time flies.
 My friend who is recently widowed, is doing okay. I am bringing over a "take out high tea" and we will dine together on Tues at her place as she isn't ready to go out yet. 
  You will have your results soon and it will put to rest all the questions or what ifs you have floating around.
 Yes, it does seem like quite a few have recurrences currently. 
 Sometimes it's like a hamster wheel you can't seem to get off of.
 In the meantime, take one day at a time and enjoy the moments/memories being made.

babs272

Thankyou for your encouraging words. I needed that. My nephew leaves tomorrow , back to his sisiters for a few more days before heading back to see his wife in China and back to teaching. there.
We took him to see my mother, his grandmother and it took awhile for my mom to be happy and convincing her to go out for lunch with us. She finally did come with us.She is 89 and things not good for her at the home. At least Jesse got to spend a few hours with her.
I hope by Wed to have my MRI results. Then we see what happens next. HAd one of my hot body heat moments at 5am and when I get them, I cannot get back to sleep.
My daughter took her cousin out to her place for the evening, So my husband and I have it quiet for awhile until he comes back. Then my nephew is up early to catch the bus back to Lumby,BC.
I cannot rember the last time my husband and I went for breakfast.It takes me awhile to get going in the mornings. LOL I use to be a morning person until Cancer hit.Starting to feel lazy.
Always nice chatting with you.Have a great weekend

babs272

MRI results are not looking good.The cancer has spread in alot of area. See Oncologists next week if there is any hope for me. My family Dr says it just does not look good. I have known since Nov and it look this long to get the MRI done.I feel like my life is being taken away.

Strongwoman

@babs272
  Hey Girl!  Chin up! No, the MRI results may not look good but you still have the ability to direct things the way you want them to be.  Find out what they are saying and prognosis both good and bad meaning treatment options versus no treatment options and then sit with the information.  It will take you time to process all of the information so don't decide the day of.  You will come up with more questions than answers once you get over the shock of the information.  Ask if you can have a telephone follow up call a few days after that next visit you are going to.  
  Once you know what treatment options lay ahead then you will have the ability to decide what to do or not do.  I do everything based on quality of life.  If I do "X" it looks like this and won't or will let me do "Y" etc.  I get that choice and no one else same with you.  Everyone wants you to fight do everything you can etc but they don't live it you do. So let yourself and your emotions do what they need to do and cry, scream or whatever it is you need. It's okay and whatever you decide is the 'right' decision for you.
 Now for what I said about the direction and control, I do mean it.  Once you go through your emotions of anticipatory grief and let yourself, you will become empowered somewhere in there.  There is still a lot you can do.  There are living legacies, preparing things for your loved ones like legal etc, what you want things to look like when you pass etc.  
  Enjoy your time with your loved ones and the time you get to be home and the sunshine outside.  I know this all sounds rosy but I have been where you are and I am on this side now planning and deciding my own journey.  I know despite what they said at my last visit where things are headed just like I knew my recurrence was happening before the 'evidence' was there.  But for now, I have much work to do and friends to see and laugh or cry with them.  
  You are processing a lot. If you feel up to it today, join our 1pm meeting and if nothing else, follow the conversation along and maybe you might want to join and maybe you don't but you will have the peace of mind that you are amongst like minded people travelling a similar journey.
  Like I mentioned before, I am if nothing else, honest to a fault. I am definitely not a Willy Wonka either.
  I know I am here for whatever you need and others are too.  Despite having a sleeping pill, you will probably see with timing of posts, I don't sleep much anymore so send a message along anytime.  There are many of us who don't sleep well and you never know who will respond and you will not be alone.
  Hoping to have you join in today and if not, watch the sun sparkle off the snow in the comfort of your home.

babs272

Thankyou Strong Woman, I needed to hear from you.

babs272

where do I find your 1pm meeting? Is this BC time?

Strongwoman

@babs272
  Find it on the discussion thread 
Teal Thursdays

Strongwoman

@babs272
  Glad you found the meeting and apologies about my not being present. I know you are having a struggle. Anything else you need assistance with?  Need to vent anymore?

babs272

I am good Just got a call from hospital for another Scan on the 9th. That went fast. Dr put a rush on it , or it was going to be another 4 weeks again.
Daughter coming over after work, to vent. I am ok.

Strongwoman

@babs272

  Good. Glad it was bumped up for you and you have supports.

Bojenka

@babs272 and @Strongwoman

your posts resonate with me. Last week I started having symptoms ie severe pain in right flank and mid back. The pain is worst at night which apparently tends to be from lymph nodes according to my oncologist.  Now waiting to hear back about treatment. It’s 2nd recurrence for me and third chemo. I had a 7 months break during which I lived my best life, fulfilling retirement dreams, traveling for my 60th BD and Christmas in Florida. Don’t want to have regrets.   

Strongwoman

@Bojenka

  I am thankful you found my posts helpful to you and what you are currently going through. I will let @babs272 speak for herself.

  Since I have found about my recurrence and then had physicians, oncologists and palliative doctors tell me it was time that I thought about 'living life', I have been digging deep as to how I feel about it. Through varying reading materials I have found many quotes in such that have resonated with me. Above all, I have also watched a younger female with children younger than myself, go through a different type of cancer and has had many choices decided for her. So, I am thankful daily for being able to interact with my family, have conversations I want to have, do things I want to do and leave legacy work behind. Some, like my friend above, hasn't been given that chance. Has lived away from the home now for months and now has the spouse has to make a decision about a long term care home for them. Sad in so many ways and where quality of life comes in for me.

Our recently widowed friend whose spouse had a different type of cancer, admitted at our recent lunch to us both that she has second guessed all the treatments he went through and is left with the question 'where did it get him but sicker and not be able to do things".  

All of it weighs on me and I choose quality. If a treatment is proposed to me, I want to know why I want to do it and both expected and non expected outcomes and durations of such. I also ask what happens if we do nothing. Or what happens if we delay X and for how long can we delay X for. What signs do we look for in the meantime.

I feel my role in all of it is not only my experience as a cancer patient but to normalize death and dying as well. It happens to all of us at some point, just some have a shorter timeline than others.

So, go, enjoy all the things you want to enjoy. Make your choices just that, your choices given the information and knowledge you have. Enjoy those around you. All of this is an individual response and reaction to being diagnosed with cancer. When you do choose, there is no right or wrong, it is strictly what you feel is right for you. Empower yourself with all the time left you have been given. I am and it fills my days if nothing else. 
 I will walk beside you through your journey. If you are choosing treatment again, well, let's see if we can find some humour on those bad days.....like a comedy to watch or something to make light of.....or a sad movie to let those tears out if need be.  All normal and expected along our journey.
Hope this post finds something that will resonate with you.

Bojenka

@Strongwoman

Absolutely, I too try to find joy daily. Living with cancer sure gave me much clearer perspective on what’s important.  Did some cognitive behaviour therapy that helped as well.
Glad to have this website. Safe forum to listen and get information from people going through the same.  It would be emotionally much harder without your support.

I like movies/humour very much so yes recommendations welcome 

Strongwoman

@Bojenka
  Before I recommend anything I find funny......what type of humour do you enjoy?  I love period pieces myself especially for dramas.  I recently watched on Netflix a NEW movie added to it, called Gifted Hands.  I am not sure if he was the first pediatric neurosurgeon solely or first Black one.  Regardless, the story is about how he became one and I will say he overcame many obstacles to get there. His Mom raised him and his brother by herself and was illiterate and when he was younger he was getting F's in his schoolwork.  It is an amazing story, about 1 1/2 hours long and was wonderful and inspiring.  I would highly recommend it.  He definitely overcame so many adversities which in and of itself is amazing.