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Hello ladies
It has been a minute since I have posted but I read everyone's posts and keep you all in my thoughts. The past month or so has been filled with excitement, happiness, fear etc. as I returned to work part time middle of July. I was looking forward to my return to work after being off for a while due to my broken leg, then cancer. My excitement was short-lived as the working conditions in healthcare are very stressful. I realized that i am no longer willing to tolerate crap that I once did before cancer and I am happy that cancer has given me the strength to stand up against what I dislike and find unacceptable.
More importantly it has made me realize that time, no matter what the circumstances is precious and I want to spend my time doing things that bring me joy and in terms of work that is teaching so i started teaching again yesterday.
I want to extend a warm welcome to the ladies known as @itzwhatever @mazupardo @mcb I am saddened to hear of your diagnoses but glad you found us. This forum is a safe space, a place where about a year ago I found and has been very important for my mental well-being as it has allowed me to vent about my fears related to this disease. The things I do not want to unload on my husband as it is is clear that doing so causes him incredible stress and sadness. he is there for me in every other way but i have come to accept that the mere thought of my possible early demise is simply too much for him to handle for the time being.
I am here for anyone who might have questions about anything. i will just throw it out there that i am in Montreal so if anybody else is and wants to connect feel free to message me
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Hello and welcome to the group. You have definitely come to the right place to find others who "get it". For all of us that means different things. Is there anything in particular you feel you are struggling with that your supports aren't providing for you currently and would like to have more support with? It can be so difficult to live with this disease and feel like we are being "heard" all the time. Those closest to us, sometimes can struggle with what this all means for themselves that it can seem like they aren't understanding exactly what we are going through. In fact it would be impossible to know what that looks like for anyone as we are all individuals and our needs are so vastly different with where we feel we need supported. If there is that one thing or couple things, let us know and perhaps we can help you through it or to feel more supported in your journey. Let us know when you are ready. 💕
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@Tanja I hear you on your plans getting disrupted and how it can be so unnerving for you at the same time. I know when I was on chemo, I had all my work schedule worked out and prayed nothing would disrupt it because it meant a lot of work on my end if I had to change everything being self employed. So, I "get it" from your standpoint. I understand how frustrating it can be. I am glad you did "let it out" and allowed yourself those feelings. It is important to let that happen as much as it is to keep up with a positive attitude (best we can) and exercise. All come in to play in our journeys with cancer. At times it definitely feels like cancer has the upper hand and rules what and how we do things in life and that can be so disheartening to us all. I hope that you will get back on track and that there will not be any more disruptions along the way for you. Hang in there! Glad you vented with us and hope you continue to along the way. 🤗
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@mazupardo I think @Hooodith said it well in her post but thought I would write a little something too.
It is perfectly okay and acceptable to show people or your people that you are scared. It is not a sign of weakness nor are you doing yourself any favours by not relating how you are feeling to your supports. They can't help you if they don't know and they risk saying or doing the wrong thing if they don't know either. We cannot be strong all the time nor do they expect us to be. I think the question you have to ask yourself is "why do I not want them to see me in a weakened state no matter what that looks like (mentally, emotionally or physically)"? Denying yourself those feelings and validating them is only wearing on you and will compound as time goes on. If there is someway we can help you as a community on your journey please let us know and we will do our best to throw some helpful tips or tricks out there. Or share our journey if it will help you with yours. When you are ready, we will be here waiting for you. 🤗
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@Tanja … I am sending you a virtual hug. You are clearly tough however, also remember to give yourself permission to be sad and for tears to flow. You need no rationalization…you are going through a lot.
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@mazupardo the ladies have offered some sage advice. I completely empathize with you when you say you feel you keep your feelings/fears inside as those around you interpret your honesty as being negative. In my experience it has been the same with those closest to me for the most part. I simply cannot talk about death around my husband he cannot handle it, and the times I have it ruins his mood for the day, makes him too sad. So, for now I let him be and if the day comes where I need to talk about it more than I will insist. I've decided to film small video clips of important things, how I feel, lovely memories from our relationship, put them on a key and give it to his best friend and brother to give to him in the event I go before him.
I've come to realize that people in general simply get uncomfortable around people with cancer. Which only makes it that much harder for people that love you. We don't want to imagine a world without those we love which might explain why they expect us to be Mrs Suzie sunshine 24/7.@hoodith was right on the money when she said there's a big diff between living in denial and putting on a brave face for others. When I was first diagnosed I would wake up in the morning and while still lying in bed my waking thoughts were that I might die very young.… This went on daily for a month or 2.. fast-forward to now, I have many many moments where I'm like..... Oh yea I had cancer, major surgery, chemo etc not out of the woods yet. Gulp.
That being said, you, me and all need an outlet. We need to talk about what scares us most and this site is one option. When I was diagnosed I knew I would need to speak to a trained therapist and god only knows why I have yet to do so a year later.
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@melissa I was diagnosed in Feb 2020, had chemo, debulking etc and was ned July 2020. I could not let myself be vulnerable about the fear of dying. I tried counseling but couldn't open myself up to talk about it, almost like if I did it made it real. I couldn't and still struggle with talking about my diagnosis with my adult son or my friends. I am in the midst of a possible recurrence awaiting a petscan early October and I'm trapped in my head ,paralyzed with the thought I may have to go through this again. I'm still not able to seek therapy because I Don't want to give negative space to this insidious disease. I remember the first Christmas after I was ned crying because I didn't want to take down my Christmas tree i didn't want this to be the last time I saw it. The struggle to communicate is real,
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To all the ladies
On this topic it can be so diverse in what we feel and where we are with acceptance there of. I, personally, would recommend the book "Hope for the Best, Plan for the Rest" OR go to their podcast series thewaitingroom.com
Here you will find a wealth of info as they delve into what it means to be palliative and the myths around it. It will empower you to see the info they provide is helpful in finding ways to have discussions about the hard conversations with yourself, your health care team and your family. It is something that has been missing in our care journey for a long time. I urge you to check it out in whatever form is best for you. I think you will find it enlightening and may help take away the stigma around "palliative" or for some of us the "recurrence" part and what that can mean for us. It will open up dialogue that should be discussed at some point in time and give you pointers on how to do that in a meaningful way for yourself and your supports. The podcasts have a lot of valuable info to and reflect some of the book as well. If you can I urge you to check it out. It may just give you that peace of mind you are looking for and support to be able to open up this very sensitive subject that has become almost taboo in many households.
It doesn't mean that family won't still have their own reactions etc or denials but it may help you. My hubby has a hard time discussing any of that but when I take steps to ensure that all my T's and I's are dotted should I pass, he doesn't question me and just does as I ask. For truly, I am trying to make it as simple as I can should anything happen to me. All decisions will be made and there will be no hiccups with financials etc because I have planned ahead for them. As always, I am open to discuss any aspect of this with any one of you as I face my own hurdles especially if it will help you in the long run. I face an uncertain prognosis and live with it daily. In the meantime I try my best to live every day for what it is while still planning ahead with all my Legacy work. I get it and I get that some of this is heavy info to intake and process. I am here for you wherever you sit. Just open up and ask.
I wish you all the best and hope you take a look at the info I provided to assist you next on your journey. 💕
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@melissa its so true about people being uncomfortable discussing the reality of cancer. I try to mentally prepare myself for the inevitable…a reoccurrence. While I was only diagnosed last year (debulking, chemo, immunotherapy) and am currently NED, I am fully informed about the reality of this type of cancer. I tell my family and friends (and myself) that it will eventually return. They get upset and say, don’t talk like that. But I need to talk like that. I am appreciative of my situation currently, but there is always the feeling that it’s a house of cards.
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@melissa I share that feeling with you. Fully understand how you feel, It's a part of all who go through this and unless you walk our path others can't understand the mental aspects. Try to stay in a positive space and truly live every minute.
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@NovaScotiagirl I am sorry you are in the midst of a possible recurrence. It makes me very angry that the reality of this disease makes the fear of recurrence very real. Many people think that when we get through initial surgery and chemo that we are out of the woods. This is far from the truth. Without living in denial I still tell myself that IT IS POSSIBLE that I won't experience a recurrence, or at the very least not for a long time. We all cope in different ways. For me, when people would ask about my story it's like I had verbal diarrhea lol sorry for the mental image. I realized that giving all the details was my way of purging it out of my system. The hubby would be like .. people don't need to know all these details. After that I would start by saying.. stop me anytime if I'm talking too much. This is not my nature per se, but I'm convinced it's how I am adapting to coping.
I find that being diagnosed relatively young caused me to evaluate my life up to now, as I'm sure it did for us all. I've said it before and ladies bear with me yet again but having my fertility stolen from me has caused an immense, deep pain in my heart that I cannot explain. I do not feel bitter but each time I see a baby my eyes fill up with tears and I hide it from my husband. Even as I write about it now I have a few tears. That being said, at 41 I knew that chances of getting pregnant were rapidly decreasing but there's something to be said of possibly being able to conceive one day, and not the next.
Having just always assumed I would bear a natural child my new reality of that not being in the stars is a tough pill to swallow. It also breaks my heart that my husband won't have a natural child as he would've made a marvelous dad. I have always been open to adoption so perhaps my child is out there.
Well, that's enough sad talk for now lol. It's sunny outside I think it's time for a walk.
Enjoy your day ladies xo
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I’m proud to say my team, that ranged in age from 6 weeks old to 79 years old, raised $985 for the Terry Fox Foundation. It was a perfect day for a run/walk. Here are a few pics.
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@alwayslearning and @strongwoman, thank you for the hug and the encouragement. I am cancelling everything for next week chemo, and have calmed down. I am glad that I have my appointments for carbo desensitization. Has any one done that yet?
Also looking again for clinical trials. I need some maintenance therapy, and there is no standardized one for CCOC.
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@Tanja I'm glad you are focused on yourself. I understand how frustrating loss of control can be. Perhaps by cancelling your coming plans, you are taking back control.🙂
I have not heard of carbo desensitization before so just did some reading about it. I'd be curious as well if anyone else in this forum has gone through this.
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@alwayslearning. I feel like I commit and then led down people but ….it is out of my control. So, I try to focus on what I can control.
I was just at the allergist. it starts with RAST (skin prick) testing to see if I have a late, IgE-mediated reaction to Carbo or Cisplatin. Then Thursday, I will see a Med Oncologist with expertise in hypersensitivity reaction who will decide whether I need desensitization - which apparently is just an extreme slowed down infusion of Carbo (with several dilution steps) dragging Carbo infusion from 30 min to 6-8 hrs. Cancer is so fun…
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@Tanja I'm betting people understand your situation. If they don't, I might suggest that's their issue and not yours. You are clearly trying your best. Try not to be too hard on yourself.
Thank you for sharing the desensitization information. It's great that the medical resources are available to help you through this. While not the same, I had a reaction to the Paclitaxel on my first infusion. That resulted in a lot of pre-medication (steroids and antihistamines) the night before and then via I/V for the first 2 hours before my chemo drugs started. In addition, the Pac infusion was then, similar to what you mentioned, slowed down. My chemo took 6-7 hours from start to finish. I learned to live with the length of my infusion. It was what it was. Just gave me more time to watch a movie 😊
Please keep us posted as you progress and learn more about your specific situation.
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i have not had carbo desense, but i did have to do a taxol one after I believe my 9th round on carbotaxol. my oncologist told me sometimes it happens to people who are going through a lot of the taxol, and i also did have a reaction the very first time. i dont know how different it would be with taxol and carbo, but for the taxol, i had two options - the first one was to up the amount of steroids i take and an antihistamine - so before i would just take dexamethasone and montelukast 24/12 hours before, and now i take 5 tablets of dexa 48 hours, and 24 hours, and i do montelukast 48 hours, 24 hours and 12 hours with the dexa on the day of my infusion as well, they also slowed down how fast im receiving the taxol because i also ended up having a delayed reaction after my 8th round where a week later i was breaking out into extreme hives. but my doc said the other option would be that i would have to do it IN patient so in a span of like a full day and a bit i'd have to stay overnight at the hospital and receive the desenstitization of taxol IF the extra steroids didn't work.
im not sure if it would be the same for carbo…but i'm kind of thinking it would be sort of similar? i also get extra benadryl the day of my infusion (which is kinda fun cause it makes you feel loopy lol).
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@Tanja It sounds like you have empowered yourself and taken back where you wanted your treatment to be headed. Is that on the mark for you or am I way off? I have not had the desensitization either but it sounds interesting and that you have done your research in that area as well. Good for you. Whatever is going to work and sit well for you is what matters. Pausing treatment in the meantime may be just what you need for now. Keep us posted as to how it all goes for you.
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