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GloHo

@Eileen
Hi Eileen. Haven’t heard from you in awhile. How are you doing? We are here if you’d like to share. 

melissa

@Strongwoman I feel well physically but find it challenging not being in active treatment. I guess chemo felt like a security blanket or something like that. The wait and see period isn't easy but what else can we do?
I will get a scan every 3 months as the CA125 was never elevated. My onc said she could put me on Avastin but wants to protect my bone marrow for now. As well, we have the targeted treatment if I need it down the road. To be honest I'm not sure how I feel about maintenance treatment vs no maintenance. Schools of thought, creating resistance or not.... Not sure. We shall see at my 3 month follow up.

@Taita, thank you for including us in the group of people you share this major decision with. You are very brave and I have no doubt it was not easy . I am glad you are surrounded by a loving family. Pop in when you can. I wish you peace xo

@Hooodith you are one funny lady.. " IPAD has chemo brain" lol I am currently out for a late lunch and laughed out loud to this.. as well as to your mumblelips comment... Is that a reference to your onc? I agree with strongwoman bravo on putting your foot down and being decisive in your decision to decide for yourself your treatment plan. I myself am not known to sticking to my guns

JoanEG

@Taita thank you for sharing your decision.  I’m so glad you have great support.  I hope you are comfortable and surrounded by love.

JoanEG

@Strongwoman I had forgotten it was Thursday and your post was just what I needed today.  In spite of my CT results being very positive I am having a day of feeling sorry for myself.  I have been unwell since Monday. Your Wednesday affirmation is exactly what I need today!  

JoanEG

@Hooodith your poem made me giggle.  I’m so glad you are feeling good and getting out enjoy g this beautiful place we call home.

melissa

@JoanEG I am so glad your CT scan results were positive! Sorry you have not been feeling well I hope that resolves soon. Don't feel bad for having a " why me" kind of day. we all have them. Have you received any news on when you might have your surgery?

Hooodith

@Strongwoman.. it may not be the answer for you, but as soon as I went on a gluten-free, dairy-free, sugar-free diet, my guts drastically improved. I was getting constant severe abdominal pain. I also added back the probiotics they had told me not to take for, blah,blah, blah reasons, deciding my guts and quality of life were more important. Good results all round. Now my bladder is bothering me again and my NP wants me to get a botox injection into it. More attempts to contact the urologist and get him to actually listen to my concerns without frightening the life out of me. 

@Taita, please don’t think my poem was ignoring your very serious life decision. I wrote it in here before I read your post. I am so sorry this is happening so soon. Yes, 66 is far too young, but I think any age is, and I am 77. Still too young. I wanted to live to be 95 and see all my great-grandchildren born, and play the matriarch. Now my niece is going to have to do that instead. But I have a good start on it as my oldest grandson is getting wed in September. But they are not pregnant apparently. I am so glad to hear that all your ducks are in a row, and possibly some pigeons as well, and that you have lots of support to be able to let go with peace and equanimity. That is what I wish for when my time comes, but so far I keep putting off the admin details. Probably a bit of denial still floating about. Thank you for sharing with us. It helps so much. 

JoanEG

@melissa I have a telephone consult with the surgeon on Jan. 12th so I hope he will give me a date then.

Eileen

Hi @GloHo. Ty for asking. Yeah not doing good. Tumors on left percolic gutter now the size of a grapefruit. Still having bowel issues. Being that the cancer has entered my a1 ascending colon behind the liver area. They did 1 treatment of radiation. To help with the bleeding and hopefully kill some of the tumor. But i can feel more pain in that area now again same with my left side. The tumors i believe is like 1 big one now from my bellybutton to my left waist to my rib and down to the top hip bone, also c diff has re come back. My Dr put in a request to speak to a cdc Dr about a fecal  transplant. I just spoke to him today. He agrees that fighting my cancer is more important than trying to battle c diff on top of it. So he put in a referral to the lady Dr who is one of the best on the Vancouver Island.  So he mentioned i should hear from her in a few days. And he gave me his name and direct no. If i need to reget in touch with him

I was able to get chemo yesterday. My oncologist who took over for my oncologist  spoke with me their just this past tues. So she said if their is some wiggle room she will up my weekly abraxane a bit. So she did. Still doing chemo treatments for 3 weeks then 1 week off. Like 1 chemo then another the following week etc. Weight down to 113 now. Some days I'm good most days stomach not so good. I look like I am constantly pregnant. Pressure etc.
 So I'll be doing this cycle then get another scan and by then she said my oncologist will be back so. She didn't exam my stomach this time.

Just finished managing to do my will and my um mmmm lost for words here. The paper that gives someone else permission to speak on your behalf if u cannot.
Just got to get signatures on both papers now. I did these myself with the help of some of the legal websites.

My sister is still here and same with my BFF.
My sister is headed back home on the 12th. She came for 1 month. My bf has moved in with me. So

Eileen

I'm glad she used the chemo as they did initially lowered it beforehand. So instead of getting 118mg I'm doing 130mg of abraxane. Whether it will do any good or not I don't know.

Eileen

Sorry upped the chemo

JoanEG

@Eileen I’m so sorry to hear you are back to fighting the c diff. on top of everything else.  I’m glad your bf has moved in with you.  Sending you strength and love.

Strongwoman

@Eileen uggh! So tough.....so much to still be going through. Glad you have the support of your BFF and sister.  You are right it is difficult emotionally when one does up the legal stuff.  I recall crying when we updated and when we signed our wills and Power of Attorneys. I can't imagine doing that legal stuff AND going through all you are going through. You have a lot of inner strength. The outer speaks for itself when one reads all your posts.  You are more than a trooper even if you don't feel it yourself right now.  
  Sounds like you have a very attentive and action oriented Oncologist currently that is doing everything they can to assist you to obtain results.  I truly hope you are not in unmanageable pain and that it is being controlled for you.  As the C. Dif is present it is hard to fathom its on the backburner but comparatively as you battle the cancer from within, it truly is the minor issue of it all.  It saddens me that it took this long for you to receive action and options for relief of symptoms.  I will keep you in my thoughts and hope that top oncologist on the island gets in touch with you sooner than expected.  Sleeping must be difficult to find a position comfortable enough to rest. How you found the wherewithall, courage and strength to write to all of us today is commendable. I don't know if I would be able to or would even have the fortitude to do it.  
  If you feel up to updating or can, we will all be here for you. Know you are in our thoughts as we wish you comfort, as little pain as can be and peace for what is for now.  You are inspiring to me and the battle you have been fighting mostly alone which is a whole other story in and of itself.  Rest our friend and find some strength for tomorrow.  

Taita

@Strongwoman I missed your earlier question. Sorry. To date I have 🤞not had any abdominal pain. I too have had a few partial bowel obstructions the last one was when I hit the proverbial wall the day of my 5th Topeocan infusion in one week. That’s when it all began. The ascites itself makes you feel tired. It also pushes up and makes breathing more difficult. I feel full and lots of pressure which affects my bowels and bladder and acid reflux of course. I don’t walk straight when I am full. Weird I know. I think it is just a reflex. A few months ago I started taking a Senekot every other night and it has helped immensely. Less bowel issues.  Just keep things moving without have to strain. 

I too have been self employed my whole life and that is almost organized. Unfortunately I can’t wrap it all up so My son in law is an accountant and it is in his lap now. Just finishing up a few things and he will be good. 

Got my taxes organized today for 2023 and confirming important papers and such. 

Our youngest daughter is going to manage the finances/investments and such for her dad who in almost 50 years of being together has never managed the finances or paid the bills and now is not the time to start. He is an engineer. His numbers are different. Lol! He is happy with all the arrangements. 

I have been receiving the disability tax credit for a few years now but the timing was not right for me for CPP. 

Just a thought. I have a very dear friend who was also my senior advisor during my political career and knows me and my life (apparently I should have written a book, it wasn’t all sunshine and roses growing up) very well.  He is a dear friend and I have asked him to write my eulogy. I will look at it (maybe edit) and it will be for my family. Kids, grandkids. My family can choose to use it in a public forum and share or keep it private. Up to them. They can have a service or not. It needs to be whatever comforts them. I am letting them decide. I did say that given I expect to be passing while being indoors with Covid, etc is not ideal, that maybe postponing might be a thought. 

Please ask away if I can help in anyway. 

I am going to post a video a dear friend who is also in this journey, but with lung cancer sent me. We hold each other up and this spoke to me. I hope it does to others. 

Taita

I

Strongwoman

Thank you @Taita 
I attempted to view the file/video you sent and was unable to open it.  Could be me and technology.  Thank you for sharing and being open about it all.
  I have my gf on board to assist my hubby as she knows more about the finances in my house and where passwords are kept compared to hubby.  As you stated, it's what fits and works.  He wants to know nothing and I am fine with it as long as someone knows.  
  I am saddened that your turn has been so quick (in my eyes, anyways) and that so many decisions are having to be made now for you.  It is why when I was encouraged to retire and "enjoy life" it was my first things to tackle.....wrap up business stuff, apply for disability tax credit and cpp disability.  I was on a mission then and can rest knowing it's completed to the best I can. Like you are doing now.  
  One does not truly know what everyone's 'back story' is and I believe yours would be read worthy by reading posts of what you have disclosed regarding your career thus far.  The proverbial "don't judge a book by its cover" as one has not walked in someone else's shoes.
  Thank you for offering to be asked anything at this point in time and being open about this part of your journey.  It is through sharing we can learn from one another.  I don't find this content taboo, more importantly, in fact, as nearing the end is vague at best in any reading material I have found. So far, I have not encountered ascites.
  Are you being kept comfortable? How is your family doing with it all? And yourself for that matter?  We all will have different journeys for sure and taking away some of that "unknown" helps to ease any anxieties around it.  So thank you for being able to and open to discussions as you continue on your journey. 

Strongwoman

To ALL that are reading this thread.  Some of this content is an area that may not be a comfortable topic for all.  My intention is that it becomes an area that is normalized as it is a reality that many face at some point along their journey.  If you are not ready to receive this information, that is understandable.  For those that may be facing this, it is useful information that helps to alleviate any fears surrounding it. It takes incredible bravery and courage to find the space to be able to share as one goes through the end stages of their own journey and all it encompasses.  
I consider myself fortunate to have had physicians who foresaw where things were headed for myself. Once I wrapped my head around retiring from my profession, my focus became making sure all of my professional life was tidied up, including legal stuff completed (updating wills and power of attorneys), applied for Disability Tax Credit and CPP Disability.  It is a lot both to organize to get it completed as well as the emotional impact it has on oneself.  It is like reality smacks you hard in the face even if you don't want it to.  These are all difficult topics to not only accept but to think about what it means and what that will look like for your family after the fact and to not get stuck in dwelling on it.  I would encourage everyone to make sure they have supports or ask for supports should you choose to start any of this.  I will also state that I am what I consider fairly good with filling in forms but required a social worker to assist me to finish completing the CPP Disability Forms.  These forms are very lengthy and require a patient portion as well as an attending physician portion.  
I believe that after going through the emotions attached to this is how and why I began my Legacy work.  All the 'what ifs' surrounded my head and started becoming overwhelming.  I then began thinking about how to chunk it down and what I wanted to do for the important people in my life.  Biggest of all being my boys and preparing things I may not be present for like babies etc.  Finding the "perfect" thing/project that I thought best represented that person and what it meant to myself as well was a journey in and of itself.  Including notes to them to go with their project is now coming to fruition as I start to wrap many of them up.  All of it is what helps to fill my days with purpose and meaning.  I am sharing this with all of you so that you can think about what I am writing and decide if now is the time to start thinking about these types of things for yourself and your loved ones.  Since joining this group, I know that some delay it and then the 'turn around' is sudden and many don't have the ability nor strength to complete any of it.  For myself, I am at peace with the fact that once I get these wrapped, I will have done all I set out to do and if that corner turns for me, well, I will be at peace knowing I have done all I can to leave some of myself behind for all those near and dear to me.  
Be patient with yourselves when you reach this stage or process as the mental and emotional toll it can have on one's psyche is a lot.  Make sure you have supports and share with someone close or professional to help you through it.  Above all, commend the courage and bravery for those that find the strength to continue to share on this site all the while they are experiencing and sharing what occurs before end of life happens. Make sure you talk to someone if this is an area that brings about emotions that you don't feel you are able to process through and to have them support you so as to not spiral downward instead. 
It would be lovely if we were all on the same page all the time. The reality is we are not and this is where one topic thread may not be for you 'right now' but will be there for when you are.  Kindly reach out if anyone needs any resources for supports etc at any point in time in your journeys. Some have excellent supports as they go through their journey and others are seriously lacking.  Know there are resources out there that can help.  One can private message me should asking in a group setting not be for you.   I will continue to share general information as I  come across it as it may be that little nugget of info you are looking for. 
Take care of yourselves as we are important and can be unkind to ourselves sometimes without knowing it.  This site is yours, ask for what you need so we can make it relevant to all.   

Strongwoman

@JoanEG Your welcome.  Yes, when we feel unwell our thoughts sometimes go down the drain too.  I hope that now it is the tail end of the week that you are feeling a bit better than earlier in the week.  I am happy to hear that one of those Affirmations was able to help you at the time.  
What does your next week look like and how have you been feeling? 

Strongwoman

@melissa Yes, it is hard to wrap our heads around the 'wait and see' phase as we analyze every little nuance of any body change we have. Especially as this is engrained in us as we go through treatments. Finding activities to fill a day can be challenging especially if one is off work still.  Pinterest is an excellent site to find very affordable ideas to do and fill up some of those days.  Journaling is another activity that can occupy more of our time than we think it can.  I am doing some journals for a few people so a lot of writing when I feel up to doing it.  Sometimes it brings tears but not always sad ones, sometimes they are happy memory tears.  I hope you find something or many things to fill this space for yourself.
@Hooodith Thank you for the nuggets of information regarding gut health. Keep at that poetry and share now and then like you do.  I am sincerely hoping I find a solution soon for my abdominal issues.
@GloHo How are you doing and where are things at for yourself?
@Eileen I sincerely hope today finds you that little bit better than yesterday.  You are inspiring especially knowing you have gone most of this alone.
@Taita Thank you for finding this a safe space to share where you are at and being open to answering anyone's questions they may have at the same time.  Truly inspiring. 
Take care ladies and thank you for sharing.

GloHo

@Strongwoman
Meet Chloe!! 5 1/2 month old Boxer mix. She has been a blessing. We are enjoying her so much!! She was a rescued barn puppy…so her foster mom had her hands full with training her and getting her used to everything in the world around us. She did such an excellent job at training her…this puppy is amazing. She is still a puppy, so still much to teach her…she is a quick learner but, of course, her stubborn Boxer side is very evident at times!! 🤣🤣 🐾🐾 We had lost our dogs over a year ago and were on the fence about adopting. This cutie won us over when we met her. We decided to adopt because we enjoy getting out and about and the companionship is welcome. Personally, I think she will be excellent for my husband when I am gone. I am better at the training stuff (more patience than my husband) and wanted to be sure she was well adjusted so felt this was the right time to tackle a new puppy!! Just look at that face!! Don’t you just love it!! She is also quite the snuggle bug. 

JoanEG

@Strongwoman I have labs this morning and round 4 of chemo coming up on Monday.  I am still feeling unwell My belly feels like it’s full of water sloshing and bubbling around in there.  Ugh.
@GloHo Chloe is adorable!

Strongwoman

She is adorbs @GloHo.  I agree with all your reasoning. I think it's why my hubby switched breeds he likes so that memories aren't attached to our former breed that we always only had.  
I think this is good for both of you.
Congrats!

GloHo

@Strongwoman
Me…I am ok. Doing weekly Paclitaxel with no breaks. I just started cycle 3. My hair is starting to thin out more…hate washing my hair because of the obvious fall out!! I’m ok with losing my hair…but watching it fall out is disturbing. I had my head shaved early in two previous treatments so this is the first time I’ve let it fall out. Is treatment working? I’m not sure. I am able to suck my tummy in - something I was not able to do before treatment started 🤣🤣. Looking at that as a sign of decrease 🤞 but won’t know until my CT is done in a couple of weeks. My blood work has been fine…no delays…it is going down slowly so I’m sure I’ll reach a point when I may need an injection to keep my blood counts up in order to continue treatment. My pre-cycle appt was delayed due to holiday Monday and was supposed to be this Monday, but appt not in my schedule and I have not had confirmation of one after I called to inquire. So feeling frustrated with that end of things and my oncologist will have to hear me out about how that makes me feel!! I do not have ascites - thank goodness. I have occasional pain in one area that seems more related to bowel/gas than perhaps the cancer itself (??). Just not sure. In the meantime…Chloe is working wonders on my mental state and gives me something to focus on instead of always my cancer. I will be getting back to my research before my appt so I can try to get my oncologist on board with trying a combo treatment. She was going on about side effects…do you know what they are etc. Crap…I’ve been at this for over 4.5 years and yes I know what the side effects are!! I will, of course, want to revisit the side effects with her before we move forward but it shouldn’t be a non-starter! Ooops…looks like my frustration is coming out again 🤣. 

Had a great holiday - lots of family time!! Unfortunately, I get a bit down at the end of celebrations because I don’t know if I will have another. Luckily, that usually does not hit me until the end of our visits so I am able to be fully present and enjoy the time we have together.  

Strongwoman

@JoanEG That is not a nice feeling. Remind me again, do you have any ascites currently?  Any word on when they may do some surgery for you?  
@GloHo Yes, I understand both the frustration and about being or getting down.  If you are the one bringing it up and asking about it, why on earth would the Onc not stop to think that you have done the research on it esp if you have worked with them year after year?  Sillliness.  Like my upcoming PMH appt, I got "did you know you were referred?".  Yes, I did as I am the one that asked to be referred and brought it up.  shaking my head rn.
Anyhow. Yes, it is always tough to look at the "end" of a celebration and wonder if we will be here for another one.  I have no idea currently and a year seems a way far off right now.  It does for me anyways. I did what you did and even though I wasn't feeling great, I did my best to be 'present' for them when I was interacting with my family.
But....I will say....Mom's know!  My Mom has like this spidey sense something is up and I am not giving an inch but she knows and keeps asking daily about me.  Same with hubby.  I will speak with them both after my appt at PMH and my Med Onc appts in a week or so from now.  Until then, I have no answers for the questions they will ask me.
Well, I finished washing up my Freshbox order that arrived this morning, wrapped my great niece's Legacy project and wrote her a card (she is 4 currently). My great nephew's is next then I am off to visit the neighbour who will take me too my PMH appt on the 15th.  I am going to her house to chat as my youngest son seems to hear things when I don't want him to know.  Sneaky, sneaky.
Chat soon my friends

JoanEG

@Strongwoman to date no one has mentioned any ascites but I am definitely wondering about that!  I have a phone consultation with the surgeon on January 12th so I am hoping to get a surgery date when I speak to him.

GloHo

@Eileen
Sorry to hear c diff is back. Glad your Onc was able to increase your chemo dosage. I hope you hear from the specialist soon. It was nice to hear that your sister and bff have been able to be there with you and that you will have the continued support of your bff. Yes…we did our wills and power of attorneys fairly early in my diagnosis. It was difficult but I definitely felt relief when it was done. One less thing to think about. 

You are an amazing woman - so strong. Sending positive vibes your way. 

GloHo

@Strongwoman
I hear you with holding back until you have more details. I am finding that I am doing more of that lately. It’s tough to always be reporting that something didn’t work and moving on to next treatment. I do tell them eventually. They don’t know how close I am to end of standard of treatment. That is partly because I am hopeful that the treatment will work for an extended period…if it doesn’t then I will have to think about having the most difficult conversation with them. I still have two treatments to try after this one…and if I have my way…I will get to retry Cabo/taxol again after that. 

There is no palliative facility in my town. I have heard that there are plans for one but groundbreaking was delayed due to Covid. So I don’t expect there to be a facility here when I need it. The closest would be London…which is problematic since my husband does not drive. I expect that for me…when the time comes…home care for as long as possible…then into palliative care bed in local hospital. I am planning on registering for MAID. I have already booked an appointment in Feb with my GP to discuss palliative care. She is part of the team in town…I am so grateful that I’ll be able to talk to her about everything. My GP keeps telling me that I am not a typical cancer patient because I am so healthy…excluding the cancer of course!! And, other than the fatigue I am feeling, she is right. So I just try to keep moving forward, knowing that the cancer keeps progressing as each treatment stops working. As long as quality of life is adequate, I continue to try to keep the positives at the forefront of my mind. I have always led my life with not worrying about something I cannot control and to just deal with it head on when the time comes. I think my ability to do that has sustained me throughout this whole process. I do like to be prepared for next steps and that is where the research comes in. I just have to find what I need, put it my back pocket until the time comes and hope it’s enough to sway my oncologist to my way of thinking!!  🤣🤣 

melissa

Hi Ladies,

Deep and thought provoking conversations we have had this week. Our stories will always share common threads, emotions and feelings but our personal journeys are unique and our own at the end of the day.

 I've been hesitant the past 2 days as my husband and I witnessed a terrible car crash on the highway unfold right before our eyes the other day and it has made me a bit shakey. The preciousness and sometimes fleeting nature life can be.

I just felt like verbalizing some of my thoughts and I hope I do not offend anyone with what I am about to say as that will never be my intention.

When I was in nursing school I read an article that, if I remember correctly was written by a doctor about death. He said, the best way to die is of cancer. No specific cancer but he went on to say basically that it allows those affected to plan, organize etc. to do things they otherwise wouldn't have done. To allow, people to express how they feel. At the time and on and on. I thought to myself.. this doctor is a quack! What a thing to say. Then when I was diagnosed I finally understood what he meant.

Now, we never know when our time is up, but a cancer diagnosis certainly made me aware of my mortality in a way I doubt I will ever be able to explain, even here on this site to those who are capable of understanding. All of a sudden all trivial things that annoyed me flew out the window. While I was scared, and still am, a certain clarity about things I knew I needed to do in the event this disease takes my life one day came to me. Writing letters to old friends, family etc. things my insecurities stopped me from doing before cancer, and for that I am grateful.

Strongwoman

@melissa How awful and definitely had a profound effect on you both this accident.  I am thankful you are both ok and feel for the families that were affected.
  Yes, the conversations have been deep and will not resonate with everyone, and that is okay as we won't all be on the same wave length as our journeys continue.
  What you mentioned you read is why I choose to do my Legacy work.  I have witnessed too many who find out too late, are not physically or mentally capable to do anything but exist and those who aren't there yet, and some that regret later.  I felt so many emotions when I was told to 'enjoy life' that it was difficult to see the gift I was given.  Many emotional days followed before my head and heart started to clear. As you mentioned, to be able to plan, forgive, and have meaningful relationships, the list could go on.  It 'fills me up' being able to leave things I want for my beloved. It also provides me with purpose and fills my days.  
  I also understand those that choose not to think or act on any of it. It is, in the end, whatever gets one through the day(s).  
  I enjoy reading posts of others lives and the joyful things occurring in them and pictures they share.  There are days that it is what I need and picks me up.  What I find most fascinating is their lives/stories and the many talents they have and feel they can share with us.
   Thank you for sharing, all of you and feeling it is a safe and inclusive space to do so.  After all, this is your space to make of it what you will and let conversations flow. 

JoanEG

@melissa thank you for sharing this.  I am still not sure where I am in all of this I do know that when we found out my husband’s lung cancer had recurred we both buried our head in the sand and carried on as normal until it was too late.  Your post has made me think hard.  I need to be able to accept my own mortality without feeling it is a sign that I have “given up”.