Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
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@mfallis I missed that chat last night even though I signed up for it. Forgetting is a real thing and I do it often. Even routine things sometimes. Baaah will it get better or worsen? Who knows!?0
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@mfallis
Awesome! Thanks. I look forward to it and will put it in my calendar now.0 -
@Strongwoman, the Speaker Series was recorded and will be posted to the OCC YouTube channel shortly, so you can watch it at your leisure.
I always hope for things getting better!
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Hi Everyone, I think I was close to a bowel obstruction the other night. I was in terrible pain, but eventually it passed. I am being very careful now.My news is that I am over a week away from my third chemo and it has been a struggle. Coupled with acute depression. But I am proud that I took action. I self- referred to one of the nurse counsellors at our clinic, and I talked to my NP, who is my primary care provider, and she thinks the SSRI I have been taking for SAD for years is no longer working. So I am going on a newer, stronger, better one, Escitalopram. I am looking forward to feeling less depressed. I know that it is a normal part of anticipatory grief, but I don’t want to get that low again.It is the full moon, and I am putting in a moon poem for teal Thursday. I wish all of you peace, comfort and hope.
Moon Love
I’m Moon, she said,
and drifted through my window,
gathered herself demurely
on the silk.
Her round, and pale face
that seemed so disconsolate
was white and cool and sweet,
like milk.
She told me of her loneliness
far up there in the dark,
with only the stars for company
who were silly as a lark,
caring only for their twinkles,
their radiance,
and their spark.
The occasional fiery comet
that blazed across her path
would charm her with its flash and razzmatazz.
But they never stuck around,
nor ever made a sound,
and a tiny milky tear slid from her eye.
But then she smiled at me
and its luminosity
lit up my drab room with its silvered glow.
And glancing up above
she whispered her secret love,
just to me, and murmuring low.
Then she did bade me sleep
for she had covenants to keep,
and so she went serenely to her place.
Alone in the black of space
she lifted up her face
and basked there in her true love’s grace.2 -
Hi all. I hope you don't mind but I need to do a major download today. I am feeling stressed, angry and disappointed. I looked at my CT scan results last Tuesday (over a week ago) and was expecting my oncologist to call me last Thursday. She didn't! So then I expected her to call on Monday - she didn't! But I did get a call to book an appointment to speak to her today because she was not in on Monday. Anyway...even though I know what she is going to say - I did my research - I am upset that she did not call in a timely manner. Not only do I want to speak about her thoughts on what's going on (I only trust my research so far), I have questions related to the results. I know I am still in the trial, so my research is probably correct. So, this has brought up all of my anger around all the "waiting" we have to do and being a "number in the system" and not a person. I need a number to get blood work, I need a number to see the oncologist in clinic, I need a number to get a chair in chemo and, apparently, I now need a number to even have the oncologist call me about my results. I have never had a Dr not call with results because I didn't have an appointment. I am also angry that this is yet another thing that I, as the patient, am going to have to stay on top of in the future...making sure that an appointment is set up to discuss my CT scans! You know I am all about being proactive and staying on top of my care routine, but jeez...give me a break! Stress is supposed to be so bad for us, yet the health care system does nothing but cause stress. I have tried reading and doing puzzle books while I am waiting, but I can't focus. Guess I'm going to have to find a way to become more focused during these times or find another strategy to get me through the waiting. You know I'm all about positivity, but I think I've reached my limit on this issue! I am hoping that this little blather will not only help temper my emotions when I speak to her this afternoon, but get me back on the positivity trail. I am going to try to be nice but this is really a sore spot for me. Thanks for listening.
@Strongwoman Thanks for all of the info - very descriptive and informative - much appreciated, especially the tip on the SRK. My GP is part of the palliative care team in town, and I have my annual checkup with her in a couple of weeks, so I will probably raise this to see what she has to say. I don't need it yet...but it's nice to be prepared. Another question...what usually causes bowel obstructions...Outside force of an adhesion or tumour? Or a constipation backup?1 -
@GloHo. I feel your pain about the numbers game and the waiting. I too have to have an appt to speak to my oncologist. The appt comes on a tiny piece of paper, in the mail. This is before I have even had the CT scan. I can appreciate how you feel like a number. It is good that I have not been forgotten, as happened earlier this summer, but it implies to me that he cannot depend on remembering me as a human being who needs feedback, information, and clarity. It means that I can’t just call him. But it all seems like this these days. Part of my depression is this feeling of abandonment by the cancer people. I don’t feel supported at all.You have every right to blow off steam about this. We all deserve better.0
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@GloHo I am thankful you turned to us and vented/dumped/raged. It is safe to do so here. You have been ah-mazing throughout your trial. You are diligent in your journaling, a trooper as you battle side effects and continue on and support ladies here. Thank you and is very appreciated.
As for waiting and feeling like a number---I found when I was at a larger hospital for treatment that was exactly how it was. I surmise you are at a large one due to the trial. This is not a good feeling. I understand it from a privacy issue and appreciate it. I agree with both yourself & @Hooodith regarding how it makes us feel. We face daily challenges with treatment, relationships with family/friends and how to function on any given day. It is tough. Are you able to see your results online? My hospital has changed platforms for that, are not advertising it and I found out from my Oncologist last visit. I hear you both and my heart feels it as well. I hope your telephone call went well and when you are ready to share, we will be here.
In answer to your question, it can be both (tumour or adhesions). Sometimes it is the location of the tumour in relation to the organ and other times it can be adhesions. To my knowledge the small bowel ones are called ileus. So, if anyone is looking it up, that is the medical term for it. An ileus is when the intestines slow down motility and the food back ups in it. It is a very unpleasant experience indeed.
@Hooodith I am also thankful that you had the foresight to advocate for yourself, get the help you need and get a medication review. I am hopeful this works for you with minimal side effects. You are right that many of us feel abandoned and unheard at times. It is more difficult as well if we don't connect well with a certain physician and feel unheard and rushed in an appt. Especially after the length of time we wait for them. One of the reasons I joined a Palliative Group at Hospice is because I didn't feel supported. There I am able to say things that are bothering me, I am upset with and are having difficulty processing. If there is one in anyone's area, I would look into it. It has helped me a lot.
I do know you both will come out the other side but it does not negate the fact that it is frustrating and tough at the time.
Hang in there!
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@Strongwoman this is brilliant. I had a feeling this would happen at some point and this exactly what Im experiencing but its just not resolving. They are going to keep me on steriods for another day at least and do another CT scan. I'm not sure its just adhesions but I'm hoping. Your SRK is exactly what I need. A way to mitigate future ones. The dietician has given me a lot of info for after it resolves and I'm at home and they advised going to liquids right away. But this SRK sounds perfect. Can you tell us more about what is in the SRK, is it for bowel only or other conditions? My biggest concern after not having to have surgery is how to stay out of hospital once this clears.0
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So sorry I missed the chat today but my best friend and I went on an overnight to her kids cottage and we golfed Wednesday and Today!! Beautiful weather and it felt great to get away just the two of us. Cook dinner, have some wine and just talk!! She is one of my best supports and i can say anything to her. So important.I am lucky to only have a couple of partial bowel obstructions. I deduced that it was salad (particularly lettuce) that caused it. I have cut out any raw vegetables and I only eat salads that don’t have lettuce (Greek). I also take the skins off tomatoes and potatoes. While they are high in nutrients they are also very high in fibre. So basically I have created a modified low fibre diet. I did have a half a fresh cob of corn this summer because I just had too!! Lol! I am not sure if my tumours or scar tissue are factors but we do what we can. Have a great weekend everyone!!2
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@mjmck21 I was in hospital for a few days with my first one. Then liquid etc.
You are in good hands.
Am SRK is ordered by a doctor and has various meds and supplies in it. The main goal is to keep you from going to Emerg. In my area there is a team of nurses that are on call 24/7. You call the number for situations like that or about meds etc. I have a nurse that comes weekly as a Check in. I did initially do longer in between but like the check in due to the obstructions.
Usually I have the IM IV meds for a couple of days, then I have them remove as I feel better. It has saved me numerous times from going to the hospital. It is worth an ask with your doctor/palliative/Oncologist.
Palliative doctors do NOT take over but work alongside your current team. I have a sublingual nausea med for those ileus times as I can't eat or drink anything. I know now that when they aren't working I have to call. I hope your conversation goes well and you stay out of hospital after this one.
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@Taita Sounds like you had a fun and therapeutic time away.
I, too, had cut out raw veg and salad. I can have one now and then but that's it. Another one I have a hard time with is fats and red meat. Our finicky insides and what they tell we are allowed to eat and not. We all find our way and how to manage.
My palliative doc, wants me doing protein shake in mornings due to my lack of appetite. It fills me and waiting another few weeks to see how it goes.
No one way for everyone. Commonalities, yes.2 -
Hello everyone. Sorry to hear of the problems some are experiencing. Such a horrific disease. I had chemo on wed and I’m ok except for constipation. I am taking senocot and restoralax but no success yet. How many days should I wait before contacting my dr? Does an obstruction feel much different than constipation? Thank you and wishing everyone the very best in their battles ❤️0
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@flory others could possibly speak to how bowel obstruction feels vs constipation but I had something my oncologist called “sticky bowel”. It was awful and developed a hernia from it.My GP put me on one Senekot every night then we knocked it down to every other night. It was a game changer for me. Maybe talk to your doctor and see what they think. Good luck!0
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Hi ladies, even though I am not able to join on Thursday I do read all the comments. Just wanted to add that I had my hysterectomy and chemo treatment at Credit Valley hospital in Mississauga Ontario. This week I had to go for my 6 months check and to my surprise I was told that I can now see all my results from the hospital online. I was able to log on and see my previous history as well.So I hope this helps if anyone in this group has treatment at Credit Valley.3
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@flory, I was able to see my blood work from the time I was diagnosed in September 2020 and when is my next appointment. Couldn't see surgical notes or pathology reports. After I had my total hysterectomy in September 2020 , before I went home I had ask for a copy of my surgical and pathology reports. Also anytime I go for a scan after I would see the oncologist I always ask his nurse for a copy of my report2
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@flory How is your chemo going? As for what a bowel obstruction vs constipation, Constipation---feels like the inability to go to the bathroom and a lot of abdominal and possibly left sided back pain. The back pain is in relation to where the descending and sigmoid colon is before it gets to the rectum. This is the area that is usually fairly devoid of the nutrients etc and the area that is involved with bowel movements/constipation. I would suggest upping your fluids and/or your Restoralax. If you are taking it once a day, take it twice or three times, it won't hurt you. I would lay off increasing the Senokot because it increases the motility and would only cause pain if it isn't moving. You can also try adding fish oil or something like that to help as well (check with your pharmacist that it is ok with the tx/meds you are on). If it isn't working, call your center and ask and they may suggest an anal suppository to assist with getting it out. Once you have passed your BM, I, personally up my Restoralax to twice or three times a day for a few days before baking off to once or twice. It will ensure that you shouldn't run into the same issue. Bowel obstruction (I believe) when there is constipation and you are bloated and don't feel good (this can incl/ nausea, vomiting, fever) Best always to check with your team as it is the quickest and easiest route. I hope that something works for you soon. I hope that this info helps you as this is what I found helped me. See ladies....the topic of poo is more common that you think and you all have something to contribute to the subject. Don't be afraid, we all have to do it and it's a safe place to talk!
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@Rad Thank you for that. My Oncologist mentioned the same to me about the new platform and best of all it is FREE! The only hospital in my area she said you can't see is Grand River Hospital. I am unsure if that is a forever thing or something to come. Thanks for letting the ladies know Credit Valley is doing this as well,0
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Thank you @Strongwoman for the excellent suggestions. I will use the restoralax more often and the senekot less. I actually had some success this morning so I am feeling relieved !!! 😅 I had my first chemo on Wednesday and I’m feeling pretty good as of today. No nausea yet. But I have read that with each chemo side effects will get worse. Is that true? Thank you to everyone that shares info here. It is a wonderful place to come for answers and insight.0
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@Taita So glad you were able to get away with your bestie! Thanks for the info on salads...I have noticed that I have a bit of an upset stomach after dinner and we often have lettuce salads, so I am going to take note to see if that is whats causing my issues.
I find it difficult to differentiate between all of the "things" that it could be...is it the cancer, foods, gas, etc., so all of the information that you ladies are providing is awesome and may help to alleviate some of my concerns because, of course, my first thought is always that it's the cancer!
@Strongwoman Thanks for the additional SRK info and process. Good to know for sure!
@Strongwoman Thanks for your support. Yes...the larger hospital is definitely the culprit. I really miss my smaller in-town satellite chemo clinic...was so easy! Oh yes! I do access the health portal to see all of my results! This allows me to digest the info and prepare for my follow up with the oncologist.
@flory I see @Strongwoman has answered your questions regarding bowel movements. Glad to hear that you have had some movement! I know that my trial drugs cause constipation, so I start taking Senokot on Day 1 and continue use throughout the entire week of treatment to offset the start of any constipation. I also ensure I drink enough water and try to get some walking in.
@flory Chemo is cumulative but everyone is different. For me, right from the beginning, I planned not to do much for the week following chemo. That way, I could do something if I felt like it or not if I didn't (without worrying about having to cancel stuff). I was usually ok during the first couple of days (while still on steroids!), but then the next couple of days my legs felt heavy - that did increase over the course of the six months, but not to a point where I was bed-ridden. Fatigue, of course, did get worse over time. But that was expected, so I just napped when my body told me to. I had a bit of neuropathy. I only felt it in my toes when I went to bed at night - by the end of the six months, the feeling had extended to the balls of my feet. Again, this was not bad enough to impede by everyday life. I also had a bit of an upset stomach (not nausea) that worsened over time and I found that taking an anti-nausea pill as soon as I got that feeling in my belly, cleared it up in half an hour. In all, I was fortunate to have mild side effects. The side effects that appeared at the beginning of treatment were the only ones I had to deal with. No new side effects developed over the course of treatment.
@Rad @flory I'm not sure which portal you are on. Probably MyChart? I honestly cannot recall how much info I could access on that portal, but on ConnectMyHealth, I am able to access the following: bloodwork, pathology/genetics, imaging (CT, mammogram), surgery, cardiology, medications. It is amazing to have access to this information! Grand River is on a different health portal...which means info is still accessible, it's just too bad there isn't one for the entire province so all health info is in one place but I guess most people will frequent their local hospital. If I end up participating in a trial in Toronto, which is out of my health portal boundary, I would then need to access MyChart for my health info.
@Strongwoman I really appreciate everything that you are able to share with us. Thank you for being real.1 -
Hi everyone. I have another question. Does anyone have sigmoid diverticula/diverticulosis/diverticulitis? It was noted in my August CT scan, but not in the following and most recent scan. I have not had a flare-up, but maybe some discomfort may be attributed to this? Can they heal/go away? I see my oncologist on Monday and have my annual GP appointment later this month...so I will follow up with my healthcare team. Just trying to figure out causes, symptoms, and remedies. I do not think I have any symptoms, but it's hard to tell whether it's something like diverticulosis or cancer or something else. I stopped eating whole seeds, grains, and popcorn a few years ago because I noticed they caused me some stomach upset and there was discomfort when they went through my system and came out the other end (poo again! 😁). You really have to stay on top of these things because everything focuses on the cancer and if it's not cancer, it kind of gets put aside until it becomes an issue. This is an issue that could lead to potential surgery (or not because of the cancer). I like to be proactive and would appreciate any advice around this issue if anyone would like to share. Thanks.0
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@GloHo I suffered from bouts of diverticulitis for years. All of us westerners on our western diets have diverticula, the pockets in the bowel wall ( diverticulosis ) that can get clogged up with stuff, and become septic. This is diverticulitis, it is accompanied by discomfort, feeling you have to go but not doing so, and often, fever. It is important to get it treated, normally with strong antibiotics. I always felt really ill, but rarely feverish. They tell you not to eat seedy food, but I think they have changed their minds about that. Stress and smoking are risk factors. I have not had diverticulitis since I quit smoking.
You would likely know if you had diverticulitis. It can lead, untreated, to peritonitis. Not to be sneezed at. Talk with your Dr about this if you are worried. I think we need to have our CT scans thoroughly discussed with us, because sometimes these terms can be frightening. My hunch is that the radiologist was merely noting the presence of diverticula in your gut.0 -
@GloHo My Aunt and my Dad have had diverticulitis. My Aunt more frequent bouts that land her in the hospital as she waits too long to seek medical attention. We (my cousin & I) have now insisted she go as soon as it starts so she doesn't end up so weak from it. (She is 84 and very thin, so this knocks her down quickly.) As @Hooodith noted in her post, this is something that you would DEFINITELY know if you had it. I concur with her last paragraph about speaking to your doctor/Oncologist about it, should you have concerns. Hoping this assists you with your question.
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@Hooodith @Strongwoman Thanks so much for your input. Very helpful. A note about divercula just showed up in the one CT so far. My son’s girlfriend’s mom just had an attack. She is now on a very strict diet and there is talk about surgery, so when I saw this noted, I became concerned. I will definitely speak to both Drs about this. Thanks again.
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Hello Everyone!
Today is our first meeting of October. Has everyone been able to enjoy the nice weather we were blessed with this week? Whether that be activities away from home, tidying up outside the home, walking or sitting and enjoying the warmth. It is changing today I hear and into the weekend.
This weekend is Thanksgiving and who has plans? Don't celebrate, how are you spending the weekend?
Any true traditions anyone carries through?
Whether celebrating or not, I feel it is also a good time to pause and see what you might be thankful for.
What does that look like to you? How does it make you feel?
Not feeling it, let us know your thoughts and where you are sitting today. Anything we Teal Sisters can help with?
I, myself, am headed to Sault Ste. Marie with my hubby. It will be the first time we have been away together since before the pandemic. I am looking forward to the drive and change of scenery. We will celebrate Thanksgiving next weekend when my parents are down from Belleville.
Ladies, it is your platform, go ahead.....say what is on your mind today or the past few days.
We are listening........0 -
I'm currently having a blood transfusion. They stopped my 6th chemo due to severe impacts on my red blood cells. I've had to have a transfusion just before or after my last 3 chemos. Does anyone know if once this happens, if all future chemos will unduly impact blood cells? I'll get a break of 6 months to a year which I'm really looking forward to.0
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@jmbarrhaven I had a couple of those prior to my surgery 2 years ago. I would like to say that it won't negatively affect your future blood counts. My bloodwork is in the normal levels. I can't answer that question though. I would like to think that once you have had a break and the body has a chance to recover that perhaps it would not occur or not occur quickly. I would ask that question while you are there. Can you ask anyone that?
Kindly, anyone join in and comment if they definitely know the answer to that question.
I can imagine that you would look forward to a break. Have you already started planning or thinking of some things you would like to do once you feel better?0 -
Thanks @Strongwoman. I did ask them and they didn't know. I find with this disease I take it a day at a time. I'm really looking forward to having enough energy to cut down my perennials and plant some more bulbs. I haven't been able to mow my lawn for 2 months as well. I'm also looking forward to attending some family events.0
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Good Morning all!
Not looking forward to Thanksgiving this year. Daughter is cooking the dinner, and I bring a homemade pie and my candied yam dish the grandkids love. I will need to find the energy to do this.
Chemo was cancelled today until next week. My BP is too high and not feeling that great , just waiting for my doctor to call to see how I can get it to come down. Be,en like this for about a week now. Nothing seems to work.
Hope you all are doing well. Have a great Thanksgiving!!!
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