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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@JoanEG Thank you for the kind words in my healing journey. Yes, I do hope it helps inspire others to begin their own journaling.
@Keepcalmandbreath No, I to not mind in the least you asking me questions about it. I think it is a couple of things. One that my tumour marker levels are going up which also means probably some growth inside as well. I don't have the report to go with my latest CT scan so I can't confirm that for sure...yet! Second is my eating. I was eating out with a couple of friends and beyond what I would normally eat. I think it was all too much at once instead of spread out over time. I have been having on/off issues since Nov and recurring obstructions during that time as well. I should have stuck with a liquid diet for longer and learned to listen to my body as well. Like today for instance, I know something is "off" and didn't stray from my eating or what I can eat yesterday. So, I am sticking to liquids today to make sure nothing happens. If it is still the same tomorrow, well then liquid again until it settles down. If I push it, I know I will have another obstruction. No bloating and no pain to really speak of, other than on my right side, I have a little pain in one spot when I push on it. So, minor but could become major and I know I need to have a BM but due to my sluggish bowels, I have to wait for them to work it out. Yes, I take a laxative daily to assist with that. For me, Lactulose works best. I was taking Restoralax and found I was experiencing some abdominal cramping with it so switched. Senokot moves stuff through the bowel and if I am already having issues it will only cause me more cramping and pain so I tend to stay away from it.
I hope that helps and let me know if you need anything more specific or have another question, I would be happy to answer it if I can.
Take care1 -
Thank you very much @Strongwoman for your very detailed response.
I think it is an ongoing issue for many of us to be dealing with and/or preventing constipation as our bowels become sluggish after taking so many meds. My family doctor recommended taking RestoraLax on a regular basis but I try not to "spoil" my bowels and take it when I don't have a BM in 48 hours (sometimes I take it in the morning and in the evening and it has been working for me...). I've taken Lactulose a few times in the past months but try to use it only in "extreme" cases (yes, it does work well). Sometimes, I drink "Smooth Move" tea (recommended by @Fearless - missing her very much) in the evening if I feel that a BM needs to happen the next day. I also find that Senokot moves my bowels too much but I've taken it a few times.. It is funny and not at the same time but having a BM is always a priority and on my mind all the time.. Just like which foods to eat and avoid after having a first obstruction episode...
I hope you will get back to your normal soon and that feeling of "off" will pass soon.
With many thanks, again.0 -
Thank you @Keepcalmandbreath
I didn't know about that tea and my local Goodness Me has it in stock. I am going to pick some up tomorrow and start trying it.
So glad we share and talk about things on this site.
I told my Mom that I feel like a child, celebrating bowel movements and everyone is happy when I do have them. So much discussion but necessary in our day to day living. Like truly, did one ever think so much discussion would be focused solely on BM's???
Yes, @Fearless_Moderator is missed for sure. She had a lot of great tips and tricks especially for you HGSC ladies. May she still be resting and be peaceful.🙏🙏1 -
You are most welcome❤️. I get my Smooth Move at a local Metro store.0
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@Keepcalmandbreath I found the Smooth Move Tea and did not take it last night. I am going to check with my Palliative doctor first as it indicates it is not for ileus and acute inflammation. The active ingredient in it, is the same that is in SenoKot which is senna. I want to make sure as I don't need to irritate my already sensitive bowels. Thank you and I will keep you posted.0
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@JoanEG I feel like I have been in a fog lately. Did you get a date for surgery and/or what they may be doing when they go in? Like what you may be facing for healing when you are out of surgery? If you have and I missed it, I apologize. I am emerging from my cocoon like a butterfly.
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@Strongwoman I am waiting for a surgery date. They will do a full hysterectomy and also remove my omentum and appendix. I will be hospitalized for 3 days and a 6 week recovery time. I will have to give myself blood thinner injections for a week post surgery. Rest assured you didn’t miss it I didn’t post anything beyond the fact I was now waiting for a date following my consultation with the surgeon. 😊0
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@JoanEG I hope you get a surgery date soon. I found the waiting difficult, I just wanted to get it over with. I had already had a hysterectomy but they removed my omentum, ovaries, and tubes. They couldn’t see anything else to remove but I wish now that they had taken my bladder. Will you be having your op at Vic General? Thats where I had mine done.@Strongwoman, thanks for your support around my need for a break from it all. I feel like a load has been lifted, and I am busy thinking up ways to improve my overall health, like fruit protein smoothies for breakfast, and regular walks now that the snow is turning into rain on our little island roads. A chance to test out my new puffer coat. And I have gone back on probiotics which they had told me not to take while on chemo. They have already improved my guts, which are sensitive like yours. This last convo on here has made me very aware of my need to monitor my digestive system. I guess its one of the new realities. This break will give me a chance for my mind to catch up on these realities and I won't be living in a fool’s paradise. We are finally taking our tree down this weekend, which is sad because I have loved it, and all the other twinkly things. But we keep some lights up all year and turn them on if it gets very gloomy and we need cheering up. I wish yo well with your challenges and coming out of your cocoon. Your words are always so spot on and so helpful. Please know that I think of you a lot and send you warm thoughts regularly….0
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@Hooodith waiting sucks. I’m glad they are going to take everything out, I want it all gone! Yes, my surgery will be at Vic. General, my surgeon is Dr. Cohen. I’m finding it very challenging to get in any exercise. My rural road has not been plowed and going for a walk is out of the question. My dogs and I all have cabin fever!0
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@Hooodith I myself stopped taking probiotics during chemo at the recommendation of the onco pharmacist.just started again a few days ago. Made me feel ever so slightly queasy the first day but it's a large dose 50 billion. @JoanEG I hope you can find something to take the edge off of your cabin fever I can relate. It's interesting to read the plan for your surgery including appendectomy, they didn't remove mine, things seem to vary from province to province as well as surgeon to surgeon0
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@JoanEG. Yes, get it all gone! Maybe one day when your stuff is done and I am mobile again and the danger of white stuff is over, we could meet at that family restaurant on the Duncan drag, have lunch, and wag our chins together. When spring is here and the broom is making people bad tempered but the daisies are smiling. I know that the broom is invasive and taking over, but I cannot help loving it, the colour and the scent. I grew up with it on the moors, along with the gorse, and I keep one tiny shrub of it by my gate, but not letting it go to seed. I am already seeing the tiny shoots of snowdrops by my front pathway. A friend told me that in six weeks we will see the tulips and daffs here. I am so looking forward to that.Let us know when you have a date for your surgery, won’t you?0
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Ohhh @Hooodith YOU make me smile as I read your description of things and your (hopeful) upcoming "chin wag" with @JoanEG Thank you!
@JoanEG It may be helpful to go back and read some of the posts I have done on things you can do to get prepared prior to surgery and some helpful hints I found after surgery. Yes, most definitely it is different for everyone and I wish you the best when the time comes. It is a hard recovery and I will not deny nor sugar coat that part of it. Let me know if there is anything you want to know or need to chat any time. I think you will feel glad when you have a date and know that it is going to happen. I know I did.
@JoanEG and @melissa Cabin fever is terrible. At Christmas due to not feeling well and feeling just that, we drove to the local mall so I could walk inside and on something flat to get a bit of movement. Everything out my way is hills and the weather was so terrible then (raining) that it was difficult to get out. Here is to hoping you both find a way to get out one way or another!
Take care all!1 -
@Strongwoman thanks for th tip. I will go back and read up on things I can do to prepare for surgery.0
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My friend lives just across the road from what used to be the biggest mall in BC. They actually had a walking group for seniors because the mall was out of the weather, flat, and easy to navigate. They would end up in a coffee shop and socialise. I always thought it was an excellent idea. The only problem was the concrete floors, but my friend used to wear special soft shoes to mitigate the hardness…Malls get a lot of bad press, but I remember how, in the winter, if I felt cabin feverish, I would drive to the mall and walk around it, taking in the lights, the colours, and enjoying watching the people. And we had a huge Asian grocery store full of fascinating and beautiful goods and foods to admire. I have lived on this little island for 18 yrs and I still miss that mall in the winter.0
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@Strongwoman I can’t seem to navigate the search function very well. Can you recap your top tips for me?0
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@Strongwoman Thank you for smiling at my words. I have spent a lot of my later life trying to make people smile and laugh, in various ways, sometimes on stage, sometimes on paper. To me, hearing people laugh at my jokes, songs or words is music to my ears, and I feel I have contributed something healing to the world, even if it is short-lived.I feel this even more in this world of cancer. Cancer isn’t funny, but it does have its opportunities for humour. I will continue to look for them. God bless our funny bones…1
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@JoanEG I will speak about my experience recovering from surgery. I had mine done robotically so only 5 2cm incisions. But, they inflate the abdomen with CO2 gas which is notoriously known to cause bad gas pain afterwards for a few days, which it did and not much can be done to ease this pain except for walking, getting out of bed, even sitting up and dangling your feet off the bed helps. Strong narcotics don't help for gas pain. If you are having open surgery then you won't be affected by this.
Things I did to help my recovery
Get up out of bed frequently throughout the day, to use the washroom, to stretch my legs, to go grab a glass of water etc. the important thing is to move, even when that might be the last thing you feel like doing, but early ambulation is vital.
I didn't have one but a raised toilet seat would've been nice the first week after surgery since I found it hard to stand up straight and kinda walked bent over. Also, make sure you have lots of pillows handy, as sleeping flat didn't work for the first week or so, I slept at about a 45 degree angle
I was no hero when it came to taking pain medications, I suggest not waiting until your pain is 8/10 rather, perhaps for the first 72 hrs take analgesics around the clock even if your pain is very minimal. I took Tylenol every 6 hours for the first 3 days, and added something a little stronger at bedtime to allow me to rest.
Also, nutrition is very important for healing so I made sure I increased my protein intake substantially the first 2 weeks, I did this also because I started chemo 6 days after surgery.
You might not feel like cooking for yourself, so, I would recommend making a few freezer meals. Hydrate too!
I could think of many more things but I think those are the most important things I did.
Oh! Don't lift anything heavier than 5 pounds for 6 weeks, that includes no pushing pulling etc. I did by mistake and I felt it.
Lastly, don't try and rush recovery as it can just set you back, ask for help when you need it0 -
@JoanEG I forgot to mention, on top of the things I mentioned above, I monitored myself for post operative infection. This included, looking at my incisions daily for any drainage that was yellow, plus like or bleeding. As well as increased swelling and redness. A bit of redness is normal. Monitor for fever, chills malaise general yuck! You won't be allowed to take a shower for a while if you have staples, normally only once they come out. I'm basing that off of what we tell our hip and knee replacement patients who have staples after surgery, so I'm thinking it won't be any different for abdominal surgery but I could be wrong. If you haven't done so already ask the hospital for a booklet on recovery0
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@JoanEG sure I can. In the search bar, type what you are looking for like "post surgery tips" "surgery" and see what comes up. I will see what I can find and guide you to what I am speaking of.1
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@JoanEG
Here it is:
Now that I have experienced it, I recommend highly a few things to have at home if you do not already:
Raised toilet seat
Someone to stay with you to help you for a week or two
Shower chair for showering initially
Depends ( I had a couple of accidents that weren't controllable)
Ovol for gas pains after surgery
Walking -- this is difficult in the beginning (or was for me) I held on to someone and shuffled more than walked the length of our house outside. I would stop when needed and was tired after. I kept at it until I could walk on my own with supervision and started loosing the shuffle.
Nightgowns-- I couldn't handle anything on my belly due to the pressure
Those are my top recommendations and perhaps other ladies have some to add.
It does take a bit to heal but one day at a time. Showers would exhaust me that first week. I would wake, eat my breakie (which took my awhile then shower) and have a short nap. Walking is the best thing to start your road to recovery.
I also was in hospital 5 days as I was having issues with pain meds and reactions. Kindly remember that each and everyone of us will respond differently to our surgery but will have commonalities.
I recall crying as I sat in my gown and this suit they hook you up to that blows warm air in to keep you warm. I was scared while in the operating room and can ensure you that they were quick to make me calm and sleepy then did not remember anything until waking up. The staff are excellent at knowing we (patients) are nervous and do their best to lessen that as much as possible.
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Thank you @Strongwoman! I have a “right height” toilet in my bathroom, my sister is coming to stay with me, I will make sure I have a big box of Poise pads and I have lots of nightgowns. It’s good to know these things in advance!0
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@Hooodith Have you been able to get out and about in your new puffy coat? What did you see and take in if you have been out? It is currently snowing lightly here in Ontario. I am catching up on the messages as I am having a bit of technical difficulty on my end of things so missed all these yesterday. I am sipping my Smooth Move Tea and am debating on whether I want to go out and walk or stay inside and putter around.
I finished my elf I am painting for my Aunt as a Legacy project.
Here is a pic of it.
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@JoanEG Surgery and what it entails is different for everyone. I went into mine not knowing whether I would come out with an ostomy or not. I had been marked for one just in case and was very thankful when I woke to not having one.
I am going to start a new thread with a topic line on surgery and some tips there. It will make it easier to find for those that may be headed to that and wondering instead of trying to sift through all of this stuff. Would that be better in your mind, too? Like easier to find?1 -
@Strongwoman thank you, that would be amazing!0
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@JoanEG I have done it and it is up now for viewing. I hope it helps!1
