Nervous to start Chemo :(: Well, I went back in... - My Ovacome

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Nervous to start Chemo :(

Sunshine0921 profile image
32 Replies

Well, I went back in for my 2nd surgery to have my Right Ovary removed, when they went in to remove the Ovary they also tried to remove the stem of my Uterus that was left in. During this they nicked my bowel which resulted in a 10 day stay in the hospital (and they still couldn't remove the rest of my Uterus) this concerns me due to the fact that my cancer is so rare and aggressive. I had kind of pushed the cancer diagnoses to the back of my brain dealing with having another surgery but, now that my Oncology appointment has been set for May 24th all the emotions have came flooding back. It's all I can think about. I'm seriously stressing about losing all my hair and really tired of people telling me it's just hair. I'd like to throat punch them when I hear that. I'm also worried about how my body is going to handle the Chemo. I know everyone is different but I feel like everything that has happened since being diagnosed with Clear Cell Ovarian Cancer has been one thing after another. Trying to stay positive and put on a good front for my family but I'm exhausted and haven't even started Chemo yet :(

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Sunshine0921
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32 Replies

Hi Sunshine,You have had a lot to deal with already, I can't help with the Clear Cell but would like to give you some support I've had 6 chemo treatments in just over 3 years and yes it has been hard at times and we are defiantly different on how we handle chemo .

I always find it hard to read a post when you are so young, though at any age it's a dreadful thing, I'm 73 and wonder have long my body can take chemo but it's also amaze's me how I keep bouncing back, I understand how you feel when you are told it's only hair I've lost mine twice now, always had red hair it came back total grey this upset me more then no hair.

I read your post about being worried about having a port I've had mine over 2 years and would not be without it, also it's a very simple procedure you will not feel a thing.

I hope when you have your appointment they can put you at ease, best wishes take care Lorraine xx

I

Sunshine0921 profile image
Sunshine0921 in reply tolorraine71-Australia

Hi Lorraine,

Hope all is well. I did have them put the port in when they went in for the 2nd surgery. I couldn't stomach having another surgery. It's a little irritating being in my bra line. You'd think they'd take that into consideration. Now that I have it I'm pretty nervous about them accessing it. LOL ~ I'm a mess...

My hair will probably come back grey as well ~ that's probably due to all the stress this Nasty Cancer causes us.

Thank you for your support and sharing.

Nancy222 profile image
Nancy222 in reply toSunshine0921

I'm clear cell as well and my hair looked at first as if it would come in grey, but then it came back to my original colour and thickness. It was the curls I couldn't handle -- having had straight hair all my life.

Sunshine0921 profile image
Sunshine0921 in reply toNancy222

Maybe mine will come back straight so I don't have to straighten it. :)

Nancy222 profile image
Nancy222 in reply toSunshine0921

There's got to be a silver lining somewhere in all this. I wish you straight hair!

lorraine71-Australia profile image
lorraine71-Australia in reply toSunshine0921

Hi Sunshine. they can put the port higher mine is a little too low and I had to buy a high cut bra but you will find it so much better then using your veins, don't be nervous about the accessing you just take take a deep breath and it's in.

As for the gray hair I suppose I could have it coloured back to Red.

Take care I hope all goes well ..Lorraine xx

Beckyjh profile image
Beckyjh

Have you asked about using the cold cap? I have each time I’ve had chemo and have been lucky enough not to lose my hair. It adds some time onto chemo day, and can be painful for the first 10 minutes but painkillers heat pads and blankets help. I was terrified when I went for my first chemo but once there you just get on with it and it soon becomes quite a reassuring part of the routine as you know it’s doing something to zap everything away!!!! Everyone is different with side effects but just listen to your body and rest as much as you need to. If you suffer from sickness your team will have medication for you which will help. Good luck xxx

Becky xxxx

Sunshine0921 profile image
Sunshine0921 in reply toBeckyjh

Hi Becky ~

I did ask about the Cold Cap Therapy and was told that they don't offer that. I also looked into renting the equipment myself. It is very expensive and I have no Insurance. The bills from my first surgery are $70,000 and I haven't even received the bills from the 2nd surgery. I try not to stress about them because I sure can't pay them. But receiving them everyday is a reminder that I will be in debt the rest of my life.

I'm not sure that I will ever fell reassured about the Chemo. From what I've read and been told with the type of Cancer I have it is resistant to Chemo drugs but that's all they have at the moment. I was diagnosed as a Stage 1 Clear Cell Ovarian Cancer. It is so aggressive they have to treat it as a stage 4.

Thank you!

Maus123 profile image
Maus123

I'm sorry you got hit with this wrecking ball called ovarian cancer, and surgical problems on top. It's understandable that you feel exhausted and worried .. especially if there is financial uncertainty in the mix.

Regarding chemo and what lies ahead... I hear ya. It drives me nuts when I hear family/friends etc say 'You'll be fine with chemo.. who cares about the hair or the side effects.. I know suchandsuch who did just fine through/after chemo so you can too blahblah..' . Sometimes nasty me thinks: I'd like to see you try.

Yes, losing your hair is more distressing than people make out , and yes, it's ok to worry what the cytostatica do to your body in the short and long run. But on the other hand it really is a question of choosing the lesser of two evils at this time and braving the path that gives you the best chance at survival.

I was diagnosed relatively young too.. at age 46. And that is, believe it or not, an advantage when it comes to dealing with the surgeries and treatments. As Lorraine said, you'll be amazed what your body can manage. Remember that the treatment is ultimately your choice.. so if it really becomes unbearable, you can stop to re-evaluate at any time and think about other options. That's what keeps me going at the moment.. the reassurance that I could step out of chemo any time, if I so chose. Thus far, I've kept going (4 more chemos ahead).

Maybe you can lend me some strength and I lend you some.. and we take it the only way possible.. one small step at a time.

All the best, Maus.

Sunshine0921 profile image
Sunshine0921 in reply toMaus123

Hello Maus ~

Nasty me seems to come out more now that I'm in menopause...LOL ~ I know Chemo is something that has to done. It's not an option not to do it :( I have 2 daughters and a 7 year old granddaughter that need me.

I will be asking about all options. I requested to see another oncologist. The first one I seen accused me of being a drug addict because of all the bruises on my arms caused by blood draws and IV's. My veins always blow when trying to get blood. I was so upset when I left the first appointment. You'd think that being in that profession you'd have a little bit more compassion for the patient. If I was playing Russian Roulette with my life I sure wouldn't be going in for Chemo treatments to survive.

Sending strength your way!

Manchesterlady profile image
Manchesterlady

Hi , I know just how you feel regaling the chemo , I’m meeting the oncologist at Christie’s this afternoon, starting treatment on Thursday, after three sessions I have to have surgery. Wishing you all the good luck , this site is amazing for giving support and advise xx

Sunshine0921 profile image
Sunshine0921 in reply toManchesterlady

Hello ~

Good luck Thursday ~ I will keep you in my prayers. Please let me know how everything goes if you feel up to it.

Sending happy thoughts your way!

Lily-Anne profile image
Lily-Anne

Hi

If losing your hair is one step too far then don’t have the Taxol. It is a top up which only does 5% of the work and isn’t known to be particularly effective with clear cell. This is your treatment regime. There are other combinations available where you won’t lose your hair if you feel you’d like that extra chemical

No chemo is 100% effective. It’s not a cure it’s a therapy. So do explore all avenues before committing or you risk becoming depressed.

Concentrate on surgery recovery. Ask your oncologist for all options. NHS and private. I didn’t know they can’t volunteer private options but that you have to ask, then they can

Good luck

LA xx

Sunshine0921 profile image
Sunshine0921 in reply toLily-Anne

Hello Lily-Anne,

I will definitely ask about all options. I seen an Oncologist before my second surgery and Taxol was the only drug she mentioned. She told me that I would lose my hair and acted like I was crazy for being so upset about it. I asked her for Xanax to help with my nerves and she treated me like a drug addict. Told me I didn't need to take nerve pills I needed to deal with it. She also accused me of being a drug addict due to all the bruising I had from blood draw and IV's. The depression has already set in :) Fingers crossed.

Thank you for your advise!

Nancy222 profile image
Nancy222 in reply toLily-Anne

Layering onto what LA said, I can't take Taxol (due to neuropathy) so I'm taking Gemcitabine. So far no hair loss (but I've only had one session).

Nancy222 profile image
Nancy222

Sunshine, I just wanted to add something in response to your post. I found that once I actually started the chemo treatments, I had a sigh of relief because that's all I had to deal with. My job is to get through chemo. It was (and is) remarkable how I'm able to say no to things, and how I'm my number one priority.

I know it's difficult with children and grandchildren, but do try to put yourself at the front of the conga line. XXOO

Sunshine0921 profile image
Sunshine0921 in reply toNancy222

Nancy ~

I will definitely try to put myself first. That will be harder to do then to say. I've always put every ones needs before my own. Guess this would be the time to start.

Nancy222 profile image
Nancy222 in reply toSunshine0921

This is exactly the time to start. I don't want to minimize how difficult it is to do that, but it can be done. Big hug.

BeeWild profile image
BeeWild

Hi it’s a real nightmare of emotions before you start chemo and the thoughts of all the side effects including hair loss is terrifying! I actually had a panic attack when my first IV bag went up!

I too had major complications post surgery and was seriously unwell as I started my chemo so that worried me too as I wasn’t sure I was physically strong enough to bear the toxins!

Well I managed to get through the chemo by being a bit selfish and really looking after me! Nobody with a sniffle was allowed near me x

The hair loss is not good as our hair defines us , I had really long hair but to be honest by the time my hair was gone the chemo had improved things for me so much, no ascites, appetite back etc I felt it was a small price to pay x I also rocked bobbles hats and scarves 😁

It’s been 16 weeks since my last chemo and it hasn’t taken long to get a good covering back xx hope you start to feel less anxious soon and sending you a big hug xx I would send you a pic but don’t know how to add one xx

Bev x

Sunshine0921 profile image
Sunshine0921 in reply toBeeWild

Hello Bev ~

I'm sure I will have a panic attack as well! I have them everyday! :(

I will definitely have to try to put myself first. This will be a challenge however. I've always put others before myself.

I will need to get me some scarfs and maybe a wig or 2. I have been waiting on getting these. I'm thinking I might let my granddaughter shave my head so she isn't in shock seeing me with no hair. I recently cut 7 inches off trying to prepare myself for this horrible side effect.

Thank you for sharing and I hope you are recovering well!

BeeWild profile image
BeeWild in reply toSunshine0921

I had a wig but it was so hot and irritating I only wore it for 30mins a couple of times so it wasn’t worth the price I paid for it for me but lots of ladies can tolerate them and there are some super ones out there xx

You’ll do this, you’re a warrior and stronger than you would ever imagine, you’ll have some wobbles and down days but you’ll bounce back x

Good luck and use this forum for support it’s a great place for offloading whatever is troubling you xxx

Maus123 profile image
Maus123 in reply toBeeWild

I'd concur on the wig tip. Bought 4 (yes, 4) wigs and now I'm not using any of them because my own worst side effect so far has been an extended rash/breakout of skin on my head.. The soft scarves however are worth every penny. :)

Maus

Lyndy profile image
Lyndy

Hello...just to add, I was terrified by the idea of chemo but was so ill luckily I had no choice. But miraculously...no sickness, no nausea, no really bad side effects at all! Ok I did lose my hair but even that I got used to. It may not be as bad as you imagine...xxx

Sunshine0921 profile image
Sunshine0921 in reply toLyndy

Hello Lyndy

I'm glad to hear you didn't have that bad of side effects. I can only hope that I have the same :)

I'm sure eventually I will be okay with the hair loss ~ just not right now.

Flamingobeef18 profile image
Flamingobeef18

Hi

I was diagnosed with stage 4 Clear Cell OC in April 2014 when I was 49 years old. Things did not look good initially and it was very scary. My surgeon told us to ignore statistics and to know that we were going to have a very hard crap year but with some luck I would be coming out the other side.

That is what we held on to. Every part of the nasty process had to be worked through and almost embraced in order to get the right result in the end. It was a long rough slog which I would not wish on my worst enemy but I did come out the other side.

You will do the same.

Written with love

Juliax

Sunshine0921 profile image
Sunshine0921

Hello Julia ~

I'm so glad to hear that you are doing well. How many treatments did you end up having?

I have a really good support team and I know I have to fight hard to be there for my family. I always put every one before myself and I tend to hold a lot in so I don't worry my family. It's time to put me first but that's easier said then done.

I'd really like to push this back till the fall but with this type of Cancer I know its not the right thing to do ~ Guess, I'll be sitting at the pool with a big floppy hat and lots of sunscreen :)

Thank you for sharing xxxx

Flamingobeef18 profile image
Flamingobeef18 in reply toSunshine0921

Hi

I had six sessions of carboplatin and taxol follow by a radical hysterectomy. After surgery I had another six chemos. Alongside this I had eighteen infusions of avastin.

I had a really good and much better than expected response to the chemotherapy.

Last year I had my first reoccurrence for which I had three sessions of carboplatin alone (out of a planned six sessions). Again I had a very good response. It is now back again so taxol is planned.

Any questions please do not hesitate to ask.

Love

Juliax

Sunshine0921 profile image
Sunshine0921 in reply toFlamingobeef18

Hello ~

I'm sorry that you've got to go through this again. Thoughts and prayers sent your way!

HUGS

Maxjor profile image
Maxjor

Hi Sunshine-there is nothing to say that hasn't already been posted but wanted you to know you have an army of amazing women (and some men!) on this site and always here to listen and support. After surgery and chemo, I decided to see a therapist because of all the emotions and not knowing how to handle waiting for test results (which is often) and its all been so helpful. But most helpful are the women who have been through it or are going through it and you found them.

Is it possible to ask them to move your port? Not sure if that's a full operation again or possibly an in-office procedure since you shouldn't be bothered by your bra or because you have to expose it each chemo. Mine is well above my bra line and no issues.

Wishing you luck, hugs and support on your journey.

oxox

Sunshine0921 profile image
Sunshine0921 in reply toMaxjor

Hello ~

Thank you! I'm glad I found this site. Everyone has been wonderful and very helpful. I'm not sure I want to have the port moved. That would be another scar. The one I have now is about 2 inches long and doesn't look very well. I'm going to go try on a bunch of different bras to see if I can find one that don't bother me. I have lost 25 lbs since my first surgery and it sounds like I will be losing a lot more during chemo so I might just get 1 or 2 since I'll probably have to get more after the weight loss. What sucks is I have about 15 VS bras that I can't wear :(

HUGS

Cropcrop profile image
Cropcrop

Hi Sunshine, I was diagnosed clear cell 1c3 in 2014, I had the surgery followed by the chemo and while the chemos not a barrel of laughs it’s nowhere near as bad as I imagined it would be, yes I got nauseous, I put on weight (simply because I ate like a gannet 🤔). I was very fatigued and I lost all my hair, but showering is much quicker and you save an absolute fortune in hairdresser fees and hair product costs and once the chemo stops the hair starts to grow back quite quickly, mine came back grey and curly but is now back to being blonde (from a bottle) and is back to being straight. I’ve not had to have my eyebrows threaded because they’ve come back really blonde and tidy (bonus) and I’ve only had my legs and other bits waxed three times since completing chemo so there is an upside of sorts.

The whole episode of being diagnosed with and treated for cancer is exhausting both physically and mentally and it’s damned scary so don’t try to be too positive for your family and friends or they will assume everything is hunky dory and not be able to support you appropriately. We try to support them through all this but we really need their support too so let them know how you feel, it’s great being positive if you can be, my oncologist says that a positive attitude really can help deal with the cancer and it’s subsequent treatments much better but if you can’t be upbeat all the time don’t worry you’ll get there.

I so understand you being scared, I was petrified but once you start your chemo you’re taking back a little bit of control and kicking the cancers ass.

Try not to read up on statistics on the internet, the diagnosis of cases of clear cell OC averages only 5% of all ovarian cancers found so that makes us very special girls 😊. Treatments are getting better all the time and help with side effects is improving too. We’ve all done this, you can too, if you need any help along the way just holler and one of us will be here to listen and help as much as we can. You’ve got this! Love and hugs ❤️Xx Jane

Mptelesca profile image
Mptelesca

Hi, Sunshine! This is all a ton of crap to have to deal with all at once. Let alone each thing on it's own is enough! You sound like you are dealing with it on your own terms and will definitely make it. You are young and strong....both great ingredients for pulling through.

I have to confess, your "throat punch" had me hysterical and I laughed out loud at work...a great thing. I, too, want to sometimes THROAT PUNCH people for the dumb crap that shoots out of their mouths. When people get nervous or uncomfortable with a situations, they just say the dumbest stuff. The most hurtful stuff comes out of closest friend's mouth. Not meaning to, but, nevertheless, they freaking say it.

If I may offer any kind of comfort....I had more of an issue of the very thought of chemo. Turns out that I am feeling better when I'm on chemo (I know that sounds crazy) because I feel like something is getting done to get ahead of this OV. It's when I'm between bloods and Scans that I begin to get crazy.

I truly wish you great things....I know you will do this. All the ladies in this group are the BEST and will offer you great support, comfort and love.

Good luck and thank you for making me laugh.:)

Marisa

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