My best friend had the surgery and more cancer was found than expected. Surgeon removed a 12 cm mass, on the Omentum (sp?) as well as the entire Omentum. Masses were found impeding the blood flow in her intestine and the surgeon felt it to dangerous to remove as this point. Cancer is extensive. I am living with her 24/7 to care for her through the thick and thin of this disease, doing my best to be supportive and letting her know how special she is and how much I love her. Her Chemo will start in a few weeks, on Cabo/Taxol. going for 6 cycles in order to shrink existing tumors and then go in for a second surgery after that. Please reply with any - any at all suggestions that I can help her with. i.e. what not to eat - what is best to eat, some say not to use the typical laundry detergents (Tide,etc) to wash her clothes, do not use any type of aero spray products for cleaning. At times I feel overwhelmed but my best friend of 32 yrs. is an Angel and means the world to me. Thank you from the bottom of my heart for responding. I know that in itself takes energy. I wish each of you Happiness, wonderful fun surprises, hearing birds chirping, and spending pain free days!
Love you all,
Hugs,
Linda xo
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homecash911
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Hi Linda, Everyone should have a friend like you! Cant say I have ever heard about what not to wash clothes in etc. just make sure your friend stays off googling about ovarian cancer, statistics arent reliable and cant tell her what will happen, she isnt a statistic she is unique. Your friend will lose her hair with Taxol and that takes a bit of geting used to, make sure your friend gets the right antisickness meds during chemo, there is no need to suffer. Also try to keep he away from ppl with colds etc. Lots of rest. feel free to ask questions as time goes on. Big hugs to you both xx Kathy xx
Thank you so much for taking the time. It's like a breath of fresh air hearing from you and the other dear ladies who have walked in these moccasins. We will look at wigs real soon and I will be sure to get the right antisickness meds for her during chemo. Can you tell me what helped you? Also her diagnosis...so far once they did surgery and couldn't take it all out was: Papillary Serous Carcinoma. Looks like, and acts likes OV cancer. Sending you big Italian Hugs. She loves, no adores her cat Kahlua She will not give up (although a person said too) cuddling her adorable cat. I wouldn't think of telling her to do so~!
Hi Linda Firstly, tell your friend to cuddle her cat as much as she wants. I bought a puppy when I was first diagnosed and it was the best thing ever, takes your mind off yourself. I think what helped best was to rest when my body told me to, do little bits when I could get out into the fresh air helps to.. Eat what I wanted ,tinned pineapple was particularly good for when my mouth was sore or dry. I didn't change much diet wise, probably just ate even more veg (never been a great lover of fruit!). As Lyndy says chemo affects us all differently and your friend will find her way through although be prepared for days when she is likely to be negative because it is tough BUT very doable. Big hugs to you both xx Kathy xx
Sorry to hear you are facing all this (and your friend of course!). In my experience you have to go with the flow on chemo because it affects us all differently and may be different each round!
So go with what she feels like eating or doing. I loved getting out and about in recovery week...so little trips to a favourite place. Don’t sweat the small stuff and reassure her that you are on her side...that’s the bit that counts xx
Okay than to let her even eat potato chips Lindy? after post surgery 1 week she is eating eggs I fix and loves, fresh avocados. I bought bananas today, blueberries, raspberries. She drank her first cup of coffee yesterday and loved it. I give her an injection of Lovenox each morning same time at 9 am and alternate between fatty tissues on her left arm, and then on the right arm the next day. She doesn't want it in her abdomen (don't blame her as she has a sizable vertical long incision from belly button down to public area. Staples just removed 2 days ago and further secured with steri strips. I will have that incision checked again before chemo starts in 2 weeks. Thank you for writing back, and she is during really great at going with the flow - perhaps better than me. We do have moments of hearty laughter only because we think a like re: things in life and can reflect on 32 yrs. of an amazing life long friendship. I love her!!!
Be well.
Always your friend,
Linda xo
Hi and welcome carbo and taxol might be a tad draining or make your friend constipated, so I suggest having prunes, light crackers sprite for the off days. She may not have these days but best be prepared. There is nothing to suggest one soap powder is different to another, it applies to radiotherapy ok. Small meals rather than large meals would be more appealing, Make sure your friend has anti nausea meds for after chemo at home. On her chemo day, a bottle of water, her favourite music and a magazine is useful.
Thank you so much Suzuki. I will make sure to bring water, and whatever else she wants. I bought her prunes (which originally she said not too) and that seems to help a bit.
What a lovely friend you are, you are very lucky to have each other. You must look after yourself as well and nap when she needs a nap and she will.
Let her eat what she feels like, little and often, peppermint tea can help with discomfort after an operation and I am on 1 tablet a day of Omaprezole to disperse acid and help digestion.
I had the same chemo and it isn’t as bad as you think it’s going to be, it will help to shop for a wig and hats before the hair goes and wear comfy clothes on chemo day, take books and mags as well to help pass the time, tell her to drink lots of water in general too. Skin gets a bit dry, so Aveeno is very good.
Could go on for ever, but we are all here if you need us,
Hi Linda. What a good friend you are! Post surgery advice from me is: small meals full of nutrition (as you’ve described eg. avocados, berries, eggs). Make sure her bowels move well (I know tmi!). Make sure pain relief (which usually affects bowels!) is good so that moving about is easier. Move as much as possible, say every hour, even just a bit, even if it’s just ankle exercises, arm exercises. Drink lots of water, a glass every 1-2 hours (or warm drinks). Cats are good!! 🐱 Sunlight & fresh air 🙂. Help your friend to get as fit as possible to be strong as possible for chemotherapy. Be encouraged, it’s amazing what treatments are available now. All the very best! Linda x
I did 2 things: I used the cold cap and kept most of my hair-you may need to request this but most chemo units have a cold cap machine. I thought it was really worth the extra time and the few minutes of pain before your head goes numb. I also took L-glutamine and did not get any neuropathy. I can't say if this was because of the L- glutamine but my oncologist was happy for me to use it.
You've had good advice so far, Homecash. I would add that you could help your friend feel like SHE has control of what is happening to her, with your help, of course.
Stuff that helped me was getting my head shaved at the first sign of hair loss - and choosing head coverings in advance. Making sure I got the print outs of blood tests. Finding a pattern to the treatment so I could predict good and bad days (I'd be better for 2/3 days after then really bad on days 6-8) and plan to stay in bed on days 4 & 5! Stuff like that.
It's very true that we are all different and deal with things in our own way. Your friend may surprise you so "go with the flow" is the best advice of all. It's good that you'll be there for her, be patient if she seems to push you away but do learn when to back off a bit. It's one big balancing act!
Hi Linda, what a kind friend and lovely friend you are. Goodness I could write reams of tips but will keep to the most salient. Are you in Italy? If so the advice may be slightly different from here in the UK (my sister lives in Italy).
A good general healthy diet will help tolerate chemo and promote good healing. I upped my intake of ginger and turmeric within my diet though. The day I had chemo I ate food that stimulated bowel movements (spaghetti bolognese with + olive oil does it for me!).
The anti-sickness drugs gave me constipation (dexamethazone and ondansetron) and it helped once I found a way of getting on top of this. I also took docusate, movicol.
I used to be ok for two days after chemo as long as I took my second steroid before 2pm. I slept most of the third day, took day 4 and 5 easy around the house and day 6 I was pottering around well.
I had my hair cut into a pixie one week after starting chemo and started to lose it the day before my second dose (very unpleasant to have it trickling down your back) so took control and shaved it. Some people have had success with the cold cap though...
All this said though, your friend is an individual and sometimes it's just muddling through, eating whatever feels right and being surrounded by the love of family and friends that gets us through. In a life that robs your friend of control, she will enjoy having control if her own life as far as possible. Let her decide if she wants to rest, be active or whatever even if you think it's unwise. She's lucky to have you with her through this tough time.
Hi. Lots of really useful advice from the lovely ladies so I would just endorse what they’ve said, emphasise drinking plenty of fluids to help kidneys flush out the chemo and be aware that the side effects of chemo are cumulative so your friend is likely to feel more tired towards the end of the treatment course. So glad she’s got you to help her through the next few months in particular. All the best to you both. Jo 🌼🌹🌻🌺🌸
I can't add to the helpful comments posted but in case this helps, I had my first surgery to remove a lesion that was located near by diaphram and heart and they were going to try to remove everything at the same time. When I woke they said there was too much to remove and I would start with chemo. After 4 cycles of Carbo/Taxol, CT scan showed great reduction in tumors etc. and I had my debulking surgery (the big one). 2 more cycles after surgery and I was NED. Just to make sure she knows its not always bad to do it the way she has to--it had a better outcome for me.
My team had a print out of meds to take immediately prior--and post--chemo to keep effects to a minimum and it worked. I would ask about that if one is not provided. And as many say, she should try to keep moving--even on a bad day (not a bad bad day if any) try to walk around the block. Good to keep things moving for a variety of reasons.
I have a couple of friends like you and I am forever grateful. You are a wonderful support and she is very lucky to have you. oxox
What a wonderful description you provided me with. I am so beyond happy to hear that you did so well with the Carbo/Taxol as that is exactly what they will be starting her on Monday April 9th. They have also provided us with the meds she is to take the night before and the day of the chemo before treatment. She is also supposed to do her lab work (blood) the previous Friday to check levels. I have stopped per Dr.'s orders on having to give her a Lovenox injection daily for the past 14 days but she has to take her iron tables am and pm. Your post has really really helped me so much. Be well!
Big Italian Hugs and sending lots of Love to you from Southern CA
Your friend must be a good person to have such a special friend in you!
You've had a lot of good tips here. I wish I had known realized before hand how quickly chemo goes by. It was six months out of my life that went by very fast.
Try to not push food at your friend. When my sister had chemo, I would slice some fruit up, quietly put it by her bedside. She would always say she didn't want it, but in a few minutes, I would hear the clink of the spoon against the bowl.
When I went through chemo, there were days when my appetite was barely there. I didn't waste away to nothing. Sometimes the only thing I could tolerate was a toasted bun with a little cheese on it. We're all so different with our tastes.
Keep her skin moisturized (leave the wound alone). And movement movement movement. There were times when the only thing I could do was walk the hallway.
I also found ice water to be the only thing I could drink.
And finally, don't forget to take care of yourself. You'll need breaks and walks outdoors.
Yes, she is a very special person. Gentle, kind unlike me never saying a cuss word! She is my family, and I will always be there for her as long as the Lord continues to give me needed strength at my age of 72 in June. She is 65 yrs. old, the loveiest of the lovely. A smile that lights up any room she walks into. I too, cut up fruit for her to nibble on through out the day: blueberries, raspberries (her favorite) now she has come to eat prunes, thank you God! and lots of peppermint tea. Her appetite is not back yet, but she does walk around alot - just can't bend over yet due to extensive abdominal surgery with many steri strips did applied to aid closure of stiches. I thank you from the bottom of my heart for your wonderful reply.
Please take good care. Bug Hugs and Lots of Love Nancy.
Hi. You sound so wonderful supporting your friend in this way. Yes, everyone is different but I ate small meals as had lots of digestion and stomach pain during 1st chemo. Lots and lots of water or hot water with lemon and honey. Also fruit and vegetables, fish and chicken. (I don't eat red meat) I would suggest that you google anti-cancer diet if you are both interested. I don't think alot of sugar/chocolate/soft drinks/cakes etc really help. Your friend may lose her appetite but needs to eat. Gentle exercise where possible is very important. Some women go to the gym but I wasn't well enough. Please keep an eye on her blood results in case she gets very low white and red cells.
Anyhow, hope this isn't too much information. Main thing is for you both to ask lots of questions and write things down. Also I had cold mitts (gloves) for my hands and feet and didn't get any neuropathy. We all have different degrees of side effects so hope your friend goes ok. Good painkillers help. I wish I had taken more! There is heaps of information on this site and also a USA site called Inspire. Just find the ovarian cancer string there and type in any topic you need to research. The chemo nurses are often excellent as well to ask and you can phone the Ovacome nurse. I rang from Australia on a phone card and she was fantastic. Sending hugs from Australia
Thank you from the bottom of my heart. What is the phone # for the Ovum nurse? What is a cold cap, and how do.i get her one? I am concerned that if she gets her head Shaved, that someone will accidentally cut her scalp
I might be misunderstanding the term "shaved", but before my chemo, I had my hair buzz cut. The hair dresser used the safety guard. It wasn't shaved as with a razor.
The last thing I wanted was extra hair on my pillow and clogging my drain.
The number for the Ovacome support nurse is 0800 008 7054, but bear in mind that it is not free when calls are made from outside the UK - I'm guessing from your name that you are in North America. The helpline is available Monday to Friday 10 am to 5 pm GMT. She will not be able to offer you health system specific help, but may be able to help in other ways.
A cold cap is a helmet you can put on when having chemo that keeps your scalp very cold. This means that your capillaries don't let as much of the chemo through to your scalp, so you are more likely to keep your hair. It's not really the sort of thing that you can buy for your friend, I don't think, but many chemo wards have them available. Your friend should ask if she's interested.
As far as getting your friend's head shaved, professional hairdressers/barbers are probably the least likely to accidentally cut her scalp. If you have a local cancer support centre they might be able to suggest someone who could do the job.
One thing that I would say from personal experience: when your friend is feeling up to it, she would probably love to get out of the house from time to time. She may not want to go where you want to go, though, so ask her where she would like to go. And when accompanying her, remember that she is probably not able to go as fast as you can, and let her set the pace. My family would set out with the best of intentions, but forget that I couldn't walk as fast as they could, and would end up looking around for me and having to backtrack a block or two to find me! (This was particularly awkward as complications meant that I lost the use of my right eye for several months, and I couldn't safely cross the road by myself!)
Thanks for being such a good friend to your friend, and best wishes for both of you for the future,
What you shared was most helpful, especially regarding the cold cap. I will definitely call her chemo nurse this week before her first chemo treatment next Monday 4/9 and ask. I appreciate all the incredible and wise tips you suggested and I promise you I will adhere to all that you lovingly shared. Thank you Barbara. Be well!!
Dear Linda, Please let your friend know how much we all care about her! You are such a special friend, and we care about you, too!
Her experience is so close to mine. It was an awful surprise when they told me how much more cancer there was than showed up on the scan.
Homemade chicken soup was really helpful for me. My husband put in thin sliced carrots, mushroom and celery after boiling the bones and straining the broth. He put in chicken breast, too. I ate that and soda crackers. I also ate graham crackers, because this surgery made my stomach increase. I also slept a lot. It helped to shower each day, which I needed help since I was weakened from the cancer taking my nutrients. I found a wonderful vitamin complex especially for cancer patients called "Safe 'n' Sound". They also have calcium/magnesium pills and digestive aids. They are developed by Nutritionists at Swedish Cancer Center in Seattle; just search Google for Safe n Sound vitamins. Dr. Patrick Buffi is the nutritionist.
Remember to have movies and music handy to help your friend take her mind off of her situation. Also, I took up loom knitting, it's much easier than needle knitting. You can shop together for soft yarn and knitting looms to make comfy beanies if her hair comes out. Mine did. If she needs a beanie right away, I'll send her one; it's what I do. Just email me her address and I'll pop one in the mail!God bless you both!💖Marg
Oh Marg, what an Angel you are! I read your post to my pal and she is smiling so big. Thank you very much for your kind offer to mail a beanie. I think she's not at that point right now but I may take you up on that awesome offer. I just made her what she asked for....mashed potatoes and a little broccoli. I will google those vitamins very soon!
Great! I can do a single layer beanie for warmer climates, or a double layer for air conditioned environments. Sometimes people get cold during their chemo because the iv meds are at room temp, 20°F below our inner temperatures! I can make a matching cowl if she gets coolness on her neck where her hair used to be. My hair fell out at about 4 weeks.😘Marg
I'm going to take you up on your kind offer of making my best friend a beanie. I think it might be best to make it double layer should her head and neck get cold during treatment. Can I send you my address privately?
Thank a million times Marg. Xo
Her biggest complaint now after surgery is gas pains and trying to alleviate them. She's trying everything for it. First chemo is next Monday. Can I pay you for the beanie? Please let me know.
Be well. Happy Easter, ps I am so tired myself. She can't bend over yet.
Oh my God Margie. This will be a complete surprise for her when I give it to her. What a blessing you are to me and to my friend, who at this time chooses not to get online. I believe she will when shes ready. I did from the beginning, simply because everyone is so wonderful in sharing of their journey and being positive about fighting it! I will send you my address in an email shortly.
That would be great Marg! You are the white orchard in God's garden. I shared your great love gift offering with my friend and she is beyond grateful smiling and saying tearfully how very lovely of you. You got 2 great FANS in LA Marg!!
Happy Easter to you both!! Thank you for your uplifting message!
💖💖Margaret
Hi what a fabulous pair of friends you are x
I read you are looking at wigs I hated wearing my wig I loved it when I got it and it suited me but it was so hot & itchy I only wore it twice I preferred head scarves or going without especially when I was friends, so look at scarves and see if you can learn how to tie them into different styles.
The main support is to just listen to your friend or just sit with her in silence if that is what she wants & allow yourselves to laugh & cry it’s an emotional rollercoaster but try to laugh more my best friend rang me last year just to tell me she loved me I was having chemo that day and just that little boost helped me.
Wishing your friend all the best with her treatment xx
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Xo
ON THE 9TH / SEPT I HAVE MY CT SCAN.
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