Let's get started! Come and introduce yourself

Bluebird

@mazzg..our shop at the cancer centre had some really cute head covers...maybe yours will too..or as @Elsie13 said maybe they have free head covers or scarves...I'm sure this is hard because of all the unknowns right now...but it will become clearer wit direction once you meet your oncologist/team...also if it hasn't been mentioned..order the book "By Your Side"   from ovarian cancer Canada...its a great resource..its free.  

Bluebird

@Elsie13..you know I would take a bag with me on my exam and chemo days...I would take a drink, water, snacks, magazine, music, earphones, tablet, phone, crossword and seduko puzzles...between the medications that let me sleep a few hours during chemo and my bag of stuff,  chemo days went pretty fast..it made it all ok

mazzg

Thank you so much @Elsie13 and Bluebird!  You've done a lot to ease my worries.  I'm trying to get everything organized without having the facts - a pretty impossible task.  I'm sure that they have similar facilities at the CHUS Fleurimont, here in Sherbrooke.  I have found a couple wig places in my town, which is a relief, so I've stopped endlessly searching for a wig for now!  As for soft stuff - I have really sensitive skin, so I'll have to see how my towels feels!  Again, thanks so much for your advice-definitely will get some puzzles, etc. I just have one question....what is the duration of a chemo session?  Hours?? oh my! 

Bluebird

@mazzg...it depends I think on the drugs your receiving, each drug runs differently..my first chemo session was about 8 hours I think..they run the drugs in slower the first time...then it was about 5 to 6 hours after that...we had recliner chairs to sit in...and they gave us a warm blanket if we wanted...its all very civil...😊  there were a few stretcher beds as well...I got one sometimes..they usually gave those to patients who were there for long time for their chemo session...the nursing staff were excellent...good resource if you have questions as well.. make sure you wear something comfortable...and short sleeve shirt because they have to start an IV for each chemo session...you will do great...your going to kick this to the curb😊

Fearless

Hi @mazzg I've been following the string of comments.  So nice to see so many of our community wanting to be of help. I hope you're not overwhelmed with information though and it's all been helpful, understanding that everyone's experience is unique to them.  

If I can weigh in with a  few thoughts, first of all you have yet to meet with your gynecological oncologist about your next round of treatment. This is likely chemo but you never know what they may recommend.  A clinical trial perhaps, the type of chemo or any other alternatives that might now be available.  So don't put the cart before the horse and run out buying things that you may not need.  Bluebird and Elsie13 offered good advice to inquire about what might be available free or on loan.  And your medical team can make recommendations about what cosmetics, creams, toothpastes etc. will be most appropriate to the specific drugs that are prescribed. 

I am going to assume you are in the care of a medical professional regarding your bipolar disease.  But will suggest that your hospital would have a social work department and you might want a referral to one of the social workers to help you manage and balance your emotional reactions.  It's so easy to get overwhelmed or go down one of those awful black holes of negative thought.  I've been out of first-line treatment now for over two years and I still meet with my social worker once a month...just over the telephone.  But I find those conversations very uplifting and productive.

You mentioned concerns about your husband.  Our caregivers, usually our spouse' , are unfortunately so often left out of the equation.  Do try to ensure he is engaged in everything going forward so he doesn't feel in the dark. A key meeting will be with the gyne- onc and assuming, because of Covid restrictions, he may not be able to be there with you do try to have them enable him to dial in to the visit so he can listen and even participate in the conversation. 

 I know pain is an issue for you, perhaps more than most. I've had chemo at two different centers and my experience  is that you'll find the staff in the chemo room very sensitive to you and your comfort.  Communication is the key. They need to know how you're responding as the chemo is infused and they tend to react very quickly to adjusting the medication. That may mean adjustment to the anti-nausea medications, the steroids, and the antihistamines all of which are provided, either in pill or infusion to help manage side effects.  And the chemo itself is delivered as a mix of the drug plus saline. Often increasing the saline to each drop of chemo or, as someone else noted, slowing down the infusion is done to help smooth out an rough edges.  The other to discuss with your medical team is the method for infusion.....that  is one thing your gyne- onc will raise with you. Some chemo is better delivered via abdominal port, some via IV into the arm, some are offered installation of a PICC line or chest port to avoid constant insertion of the IVs..and there are other options that may be discussed with you . 

As mentioned before stocking up on things you think you might need beforehand should be just minimal. For example, I had read all about nausea and the importance of making sure I was hydrated and receiving necessary calories and to expect that as a problem  So my husband stocked up the freezer and larder with masses of popsicles and freezies, puddings and the like. Guess what...I had absolutely no nausea.  In fact, the steroids gave me a voracious appetite.  Same with head coverings.  My chemo started in June 2017 and since I tend to have an overly hot scalp in the summer I was actually looking forward to losing my hair. I decided not to buy a wig, but I did invest in some scarves and head coverings mostly for protection from the sun.  Guess what....didn't lose any hair.  I ended up donating the head coverings to the cancer clinic.   

As for what to expect in the chemo room in terms of time, it's all dependent on what is prescribed. If you get the standard "cocktail" of carboplatin and paclitaxel you can probably expect at least four hours which includes saline and side effect infusions first, then a break of 15 minutes to a half hour between drugs, and then a saline flush to finish off.  Our teal sisters here have offered lots of ideas of things to bring to keep amused given you are likely not going to be able to have anyone there with you.  That said, I found I made a number of friends in the chemo room over time who were on the same cycles as me and the nurses are never far away.  You can eat, by the way, while being infused so I always either had lunch or a snack to nibble on and a big bottle of spring water since the water at the hospital here has an awful taste.  

Lots to think about I know and much of which you can't really plan for until you see your oncologist, so I hope that meeting is sooner rather than later. I'm sure he/she will help put many of your fears to rest.  What I can offer from my own experience, is that what you see in movies and TV is way over-dramatized compared to what I and all of my teal sister friends actually experienced. 

In the meantime, I hope there is some improvement in your recovery from the surgery. I am sorry you're experiencing so much pain but understand it.  I had some minor surgery early September...a laparoscopy that was more exploratory than anything and I was amazed at how much discomfort I was in for the first few weeks after.  The healing process isn't fun for sure.  At least this time I didn't balk at my distaste for medication and made sure I took Tylenol regularly to help take the edge off. But I'm now six weeks out and other than the odd twinge here and there just fine.  Wishing the same for you. 

And wishing you happiness on this Thanksgiving weekend. Despite this illness we share, there are still many things we can be grateful for in our lives, one of which, for me, is being part of the OVdialogue community and knowing I'll never be alone as my journey progresses.   

mazzg

Hello @Fearless - Vol Mod.  Thank you so much for your advice. You sound so calm and, in turn, have calmed me down too!  This surgery pain has really thrown me through a loop and now the thought of pain/discomfort during chemo. is driving my desire to act!  They did install a port under my breast .. I was horrified when I came out from surgery... but I guess that's where the chemo. is going to go.  The thought of sitting there for so many hours without my husband is also a big stresser for me.  He was my rock throughout my hospitalization for mania, my depression - which lasted 8 years, and yet, he won't be able to accompany me through this. I don't think there is any way to get around this.  A social worker is a great idea.  I have been with my psychiatrist for 17 years now, but I don't actually have a psychologist.  Back then, I did see a few,  but they weren't helpful to me because I had researched my condition and was determined to come back from the brink of hell through reading and not through uncomfortable silences! This situation is a bit different and I guess I should see someone specialized.  I will see if my psychiatrist knows any English social workers or psychologists specialized in cancer patients. I am so grateful that so many of you have reached out to help me and to help ease my fear!  I am so lucky to have found this place to voice all my concerns!  My Ovi sisters - Have a Wonderful Thanksgiving! 

mazzg

Hello All.  I finally got my diagnosis.  It's a low grade serious epithelial ovarian cancer, Stage IIIA2.  It is slow-moving and they think they got it all, but are doing chemo. as a precaution.  So, I will be on 6 session of chemotherapy.  I'll be taking Carboplatin & Taxol on a Day 1 and Day 8 and then 1 week off schedule. This means I will be in treatment until February, 2021.  I can't believe it.  I thought it could be over quickly, but now, the idea of sitting there for 6 hours with needles in my veins...I don't know if I can take it!  I'm trying to be brave, and everyone is so happy that my diagnosis is so positive, but to me ... it's not so positive. I have confirmation that I will lose my hair (unless I'm in the 1% that don't!). I'm so distressed and when I complain, all I hear is ... you are so lucky!  ugh! 

Fearless

@mazzg Thanks for the update.  I promise not to say you're lucky. No one with this disease, no matter what type or stage, is lucky...that's for sure. But you should feel some relief to now know exactly what you have and that it is the slower and least invasive.  That should give you hope.

As for the chemo, that's a very standard but much needed precaution. So while the thought is not pleasant, try your best to grin and bear it.  And while I can't forecast what you're experience will be, I can tell you that I was terrified beforehand and now look back and realize it was much easier than I had expected. Much of that is due to how wonderful the chemo staff in these centers are. Their job is not to just administer the medications but to make you as comfortable as is possible.  Communication with them about how you're feeling is key to allowing them to make whatever adjustments are necessary to keep you as comfortable as possible.  

I thought you had said you had a port. Is that not being used for the chemo?  If it is it saves you the concern about IV's. If they've decided not to use the port then you still have an option to discuss....PICC line or chest port; both outpatient mild surgery as possibilities.  

Do ensure you have By Your Side ordered from Ovarian Cancer Canada and use their website for more information and resources available to support you.  And hopefully your cancer center would have an intro session.  I didn't get one since I had a long way to travel so I arrived for my first session a basket case; but the staff were great and walked me through everything before they started setting me up.  I really felt very nurtured and secure.

Yes, you'll likely lose your hair.  Yes, you'll likely have some nausea but they have meds for that  and maybe you'll be like me instead...no nausea. I ate like a little piggy the entire three months. And yes, you'll have fatigue.  For me it wasn't a walk in the park but it also wasn't nearly as bad as I had expected.  The drugs they've prescribed are pretty standard, and you'll receive lots of other meds intended to mitigate any reactions and side effects.  And equip yourself with things to occupy the time....bottles of spring water to hydrate, a snack or lunch, magazine or a good book or a smartphone or iPad to keep amused. And trust me, you'll probably doze off for awhile too.    

And finally, I know it's no fun going through the chemo alone. I was lucky to have been able to have my husband and my son there as they were able to join me. But I also met some wonderful gals in the chemo room who later became good friends. We were all on the same cycles generally so over time you get to know everyone. We had some good giggles in that chemo room...and lots of happy dances as each one of us finished treatment and rang that bell.  

So, all I can say is you're not alone. There are 600 women on this site who've either been where you are or are in exactly the same situation right now.  The silver lining of this cloud to stay focused on is destroying this disease. Think about the future you'll have once this is over and done with gal.  Truly the best is yet to come...just be patient.  We're here for you all the way. 

Bluebird

Hello @mazzg..I'm so happy you finally have answers..as @Fearless - Vol Mod has said no one is lucky to have this disease...and will you breeze through this..no one knows..it is always very personal the decisions you have to make and your reasoning...and of course what's important to you..yes you probably will go bald..hair grows back...yes you might be nauseated but there are drugs that you take before..during if you need it and after...yes you will have an IV in for each Chemo...the drugs themselves didnt hurt..and the IV is out and your on your way home...its important to talk with your team..so they know how you're feeling, nausea, pain,scared......how your previous treatment was for you...be honest..that's how they'll know how to help you...now I'm going to throw a curve at you ...would you regret not trying this treatment if you knew that this may give you time disease free...you have all of us with first hand experience...to help you through this chemo or if you choose no chemo..we will support you through your decision..its ok..take a deep breath..its alot to absorb from your team..and your mind is probably going a million miles a minute...its normal because it's nothing you've experienced before...I do want to tell you it's ok.. it's going to be ok is what all of us hope for you..

mazzg

Thank you both for your uplifting words!  I'm pretty scared...it's a countdown and I keep looking at the clock.  Only 2 days left before the start of chemo.  I really hope it goes ok.  My veins are small and, yes, they did put a port on  my breastbone under the skin. But, they will also be using an IV in my arm - so 4 hours in the port and 3 hours in the vein, then they will switch it the next session. Of course, I can't stop worrying!  All say that it will become second-nature...I really do hope that it can be that for me too.  I just don't think I can do it without my husband there.  I know that, if there is a lot of pain, I'll just start crying uncontrollably! 

Fearless

@mazzg We'll all be thinking of you and wishing you well this week.  Pain-wise, for me, the IV was the only "pain" I ever encountered and that was very seldom. Usually, even with my annoyingly terrible veins, the nurses were able to put in the IV very effortlessly.  Otherwise I don't recall any pain as the drugs dripped into my system.  If you feel any discomfort from the drugs, just let your nurse know immediately and she'll make whatever adjustments required for you..often that only requires increasing the mix of saline to drug or just slowing down the drip a bit. Do let us know how you make out...we're hoping to hear you were pleasantly surprised at how easy it actually was, compared to your fears.  

nadiaC

Hi @Mazzg - I hear you about being afraid of chemo. My first treatment was July 10 and I was terrified. The nurses in the treatment room were incredibly kind and gentle. They explained things to be clearly and helped to put me at ease. It is difficult doing this alone, but your nurses will take good care of you. For me, the Benadryl infusion is always a bit uncomfortable, so they slow down the infusion from 15 minutes to 45 minutes, and increase the amount of saline that gets mixed with the Benadryl. Now I don't feel anything. Do let your nurses know if you experience any discomfort whatsoever. Take heart in knowing you are doing what you can to fight this disease. We are all with you and supporting you. 

mazzg

Thank you both so much for your support.  I had such a horrible time with my hysterectomy at the CHUS Fleurimont in Sherbrooke.  Everything that I read told me that someone from the 'Team' would want be checking on me to make sure  that everything was healing properly.  But they released me from the hospital with absolutely no personal care at all!  Yes, medication ... but that is it!  And no numbers to call (like gynaecology) if I was in any distress.  The Emergency room was the only place that I was told to go to.  But that was starting all over again and waiting for what they say about the pain!!!  All I needed were muscle relaxants, and I told them over and over what was wrong - quivering & cramping muscles!!! It just seemed like no one took responsibility for what they did to me!  So, my faith in their oncology dept. is little to none.  I believe this is the root of my fear - that I will just be left in pain.  Irrational? Well, when you went through what I went through for 5 weeks - it's definitely a huge concern! 

nadiaC

That sounds so difficult @mazzg. I'm sorry that this happened to you. I sincerely hope that your experience with the oncology team is more positive. Sending you a hug. 

Bluebird

@mazzg...what time is your treatment on thursday?...we will be thinking of you..with your first chemo...send us a message to let us know how you are doing..we can chat back...if your husband cant be with you..can you face time him while your going thru treatment..and your sisters?...is there a Psycology dept attached with your oncology hospital...maybe chatting with a psychologist can help you with how your feeling.maybe and your experience you went through....I still have appt.  Maybe every one to two months with my psychologist...shes given me mindfulness exercises to help me as well...maybe something to explore for yourself..anyways...mazzg..you've got this one in the bag...were all here for you..sending positive thoughts your way..😊

mazzg

Thank you @Bluebird.  My treatment is on Friday and I will be thinking about all of you and your words of strength!  I will find out everything on Friday through my Pivot nurse. I do think there are psychologists available, I just hope one of them speaks English! My French is great in day-to-day things, but expressing complicated emotions in another language is another thing!  I never studied all the words for hospitals, treatment or really being sick!!!!  Figures!  I did speak to my psychiatrist yesterday and she assured me that, if I couldn't deal with it on my own, she will call the oncologist to intervene and allow Shawn to be with me through the whole 6 cycles.  I keep counting down the minutes to my first chemo session - had to take morphine last night to sleep!  The pain from the surgery is still there - painfully stabbing my abdominal muscles.  So I hope they don't take any pain meds. away from me during this because that would be tragic for me!  I know I'm all over the place.  I got my hair cut yesterday - not buzzed yet, just a little shorter than I usually have! What I do need advice with is....how do you wash a bald head? Do you use shampoo? Some kind of shampoo for bald heads? Weird thing to think about but maybe someone on this chat has some advice about that.  And, if there's any preferred moisturizer (non-comedogenic), body lotion, body wash, etc.  So much on the internet, but I don't trust that...I'd much rather ask the 'professionals'!  Thanks again, Grace 

Bluebird

@mazzg...I will be thinking of you friday.  I apologize because I did not realize you were already seeing a psychiatrist..that's great..you are all over the place but that's ok..its overwhelming...lots of unknowns because you've never experienced this..be kind to yourself..this is alot to go through and still recover from your surgery...they never asked me to stop any medications except Tylenol as it masks fevers..maybe your psychiatrist can intervene to have your husband there for at least your first chemo treatment...can you ask for an interpreter because you're not fluent in french?  Just a thought...for hair..gentle shampoo is what I was told...just used what I had and when I had no hair I would wash my head every 2 or 3 days and lotion..lots of hats and scarves..my head got cold easily...remember your bag with drinks/snacks/food and things to occupy your time..

mazzg

@Bluebird You are such a source of positivity!  I did speak to my psychiatrist and she talked me down from my heightened emotional state.  Part of it is due to my sister going through a messy separation in Toronto.  I am the 'hammer' of the family and I'm not able to physically help. I know I have to focus my energy on me, but it's difficult!  The oncologist told me to stop Naprox, but none of the others, so I will continue to take the pain killers.  I now have to go through a series of vaccines!!! OMG..will the pricks ever end?   

mazzg

Here's a strange question. Will I be wearing a hospital gown during the treatment? I have a catheter placed under my boob!  Anyone have a possible answer? Thanks! 

Fearless

@mazzg I can't answer since all my infusions were done by IV in to the arm.  And care centers differ.  You're best calling the chemo reception or alternatively and regardless, wear comfortable, loose clothing anyway. That way you're prepared to either easily change into a gown or allow for easy access to the port. Me,,,, loose track pants and loose tops with button fronts....maybe a T underneath.  Layering works when you don't know if the room will be cool or hot.  

kastoyles

@mazzg I remember my first treatment like it was yesterday - and it was four years ago. I wore street clothes, but I did not have a catheter, so they may ask you to wear a gown. Be sure you are well hydrated before and after treatment, it helps flush your system and the infusion. I took Tylenol for pain - it was the only pain med I was told to use. I'm also on meds for high blood pressure and my choices are limited. I met with the pharmacist with a complete list of medications, vitamins, and herbals that I was using. She told me that some meds, vitamins, etc can interfere with the chemo - but Vit C was the only one I had to watch until after chemo was done.

I used my regular shampoo and only washed scalp every few days—there's no hair, so you don't want to dry out your scalp. I didn't sleep at all the night before - the steroids didn't help - but I was worried about the treatment, side effects and any other little thing that popped into my head. On the way home, my husband and I both remarked at how well it went. I felt good - not sick at all. Over the next few days the side effects started to appear. Again - not as bad as I expected but I took all medications as prescribed and I know it made a difference.

With each treatment, the side effects to increase. Having said that, after the first treatment, you know what to expect and the next ones won't be as nerve-wracking. My husband was with me for each treatment. He helped me to the bathroom (dragging the infusion machine!), got me lunch, water and just held my hand. The nursing staff were amazing! They are there to help you so don't hesitate to ask questions and/or tell them how you are feeling.

We'll be thinking of you on Friday. Hugs!

nadiaC

@mazzg I don’t know if things differ between hospitals but I’ve never seen anyone wearing a gown. Regular comfortable clothes in layers with socks and slip on shoes are a good option. Good luck! 

Bluebird

@mazzg..I wore a gown once because my IV leaked all over my shirt and its toxic to others so I had to wear a gown..otherwise i never saw anyone else.  Maybe wear a button shirt so the nurses have access to your line..or maybe they will have you change into a gown...its different everywhere.  As @nadiaC and @Fearless - Vol Mod said...maybe dress comfortably and in layers..then you can adjust as needed.  

Bluebird

@Fearless - Vol Mod..I probably wont make the chat tomorrow during the time as I'll be working..but maybe I'll join s chat late tomorrow...you're doing a great job as our facilitator..

Bluebird

@nadiaC..how are you doing with your 5th treatment..just one more😊

nadiaC

Hi @Bluebird I’m in week 3 now and doing pretty well after chemo 5. My energy is good and I’ve been walking as much as I can every day. I have chemo 6 next week on Wednesday and a scan shortly after that. 🧡

Bluebird

@nadiaC..I'm so happy for you..you powered through after a difficult start..and you provide such kindness and positivity to everyone...you are such a seasoned veteran now😊❤

nadiaC

Thank you @Bluebird 😊 I’ve had so much support from my teal sisters on this site 🧡 I’m so grateful and happy to give back. 

mazzg

@nadiaC I am so glad that you're finally at the end of chemo.!  It must have been a long and difficult road that I will be starting on, so I'm reading all of your comments!   I, too, am so happy to have found my Teal sisters!  You all are helping me so much!  Even with the 'stupid' questions that I have!  Thank you! 

Fearless

@mazzg and everyone....a reminder that no question or comment or emotion is ever "stupid".  We all entered into this journey, in most cases, completely oblivious to this disease and what to expect.  In my experience, I wish I had found OCC and this site much earlier in the process.  So many questions of my medical team that I could have asked early on and not have been hit with so many surprises...I hate surprises! So many feelings I thought were me overreacting, only to find I was not alone at all.  So ask away...vent away....share your experiences, thoughts...and your celebrations...and use the OCC website for the wonderful source of information that it is.