Very down today: Hi ladies I’m at my fourth day... - My Ovacome

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Very down today

Manchesterlady profile image
40 Replies

Hi ladies

I’m at my fourth day after chemo. And feel much worse than my first one . Totally exhausted and very depressed. Don’t think I can do this , I have to have surgery after the third one . It’s overwhelming me at the moment. Sorry to moan , when so many of you are so brave . 😔

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Manchesterlady profile image
Manchesterlady
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40 Replies
Yoshbosh profile image
Yoshbosh

Aw, Manchesterlady. It’s normal to feel like this, especially once the steroid buzz has worn off from the first couple of days post chemo. Take it really easy for a few days and rest if you need to. Also try to get out in the fresh air - it really helps, honestly! Just a little walk around the block can help re-energise you.

Vicki x

Lily-Anne profile image
Lily-Anne

Chemo side effects usually kick in after day three and commonly last until day ten. Then cell counts drop and you become the most vulnerable in terms of picking up infection, days ten to fourteen. Your bloods should start to recover after that ready for the next infusion on day 21

Effects are accumulative so it tends to feel a little worse on each cycle. However we all vary in terms of how it affects us, it’s just a case of being prepared for it. Chemical therapy is a poison and brings with it all the joys you would imagine

Lots of fluids and small snacks even if you don’t feel like it. I needed plenty of Gaviscon and a daily sachet of movicol for three days

Chin up

LA xx

Janet235 profile image
Janet235

This is your second round of chemo - yes?

You are right on track with the down symptoms which Vicki and Lily-Anne confirm... these will last a few days before you start to pick up again.

You will most likely find the 3rd treatment harder as the cumulative chemo effects kick in

And yes it is all scary, unbearable at times and often depressing especially when you have never felt anything like this before.... that's why we more experienced/ further down the line with different treatments and tougher symptoms to bear are here to help you in any way we can.

I think you must ask for emotional and psychological help at your next appointment - we all have different levels of ability to cope or not with these very different and frankly terrifying experiences we are going through... don't hide anything... you need face to face help as well. Have you been down to Maggies yet? They are so helpful and kind....

You will need a lot of strength when it comes to the surgery part...I know I am not exactly being calming and reassuring here, but bit by bit you WILL find the strength to deal with what is happening to you, there is no alternative...

We are all rooting for you. Meanwhile rest, exercise gently and build in a treat a day..

Janet x🌈

Zena41 profile image
Zena41

Hi agree with vicki ....

it affected me more mentally, people came round to take me out and I just wanted to sit in a corner and cry. I cud not look after my baby first week.

But there is light at the end of the tunnel hang on xx

Jo-Jo1-UK profile image
Jo-Jo1-UK

Hi, I’m sorry to hear you are feeling so awful. I had a very rough time on chemo, was a regular at A&E with sepsis and UTi’s. Someone once said to me my treatment was ‘tough’ but not ‘Impossible’ which really resonated with me. It’s hard at the time to imagine getting through it but you will! Could you call your Oncology nurse maybe to talk things over especially as you feel so down or Ocacome have a helpline? You should see your Oncologist in between chemo sessions so you could discuss how you have reacted this time and if they can do anything to help alleviate things next time. I hope the rest of your chemo and surgery goes well, take all the help you can from family/friends and make life as easy for yourself as possible, ready meals in freezer etc. Take care. best wishes, Jo xx

Manchesterlady profile image
Manchesterlady

Thank you so much for your advise . It’s a huge support to me knowing that it’s normal to feel like this . It just feels like this is a horrible way to live .., but the alternative is to awful to think about . Wish I had your strength at the moment .xx

Katmal-UK profile image
Katmal-UK in reply to Manchesterlady

Hi. I read your post and then this second one. Beleve it or not you are stronger than you think. I doubt there is anyone on this forum who won't know exactly how you are feeling right now, feeling so down, so exhausted, wondering how others get through it but you feel like you wont. YOU WILL, Take it an hour at a time, You will look back after you get to the end of chemo and wonder how you achieved it. I know because I have been through chemo 3 times and each time I said never again, and I want to stop. As you say, the alternative is too awful to think about and as they say what doesn't kill you makes you stronger. Sending you a big hug. xx Kathy xx

Kryssy profile image
Kryssy

Aw bless you. You are in a place that we have all been in and some of us are still in it. It's normal, understandable and horrible but you WILL get through it and come out the other end all the stronger for it. It's amazing what our body and soul can tolerate and when I was in hospital in agony and paralyzed with neuropathy from the taxol, I begged my husband to let me go. But I got better and now it's just a blur and I'm glad to be alive. I'm just suffering a bit from my second dose of carbo/caelyx but each day it's easier and I'll be doing something positive today, even if it's a bit of knitting or dead heading the roses.

The advice you have been given by the girls is the best in the world. Someone unrelated to talk to is invaluable. I have a cancer support counsellor here in France and she keeps me sane and lets me rant, cry and laugh my feelings out in a way that my loved ones can't. Hubby has one too. There is support in UK so please don't be ashamed to ask for help to see you through this rocky journey.

We are all here for you and you are not stupid or weak or about to give up because your teal sisters are with you 24/7 and love you. Keep that thought close to your heart.

Love and hugs xxxxxx. - YOU CAN DO THIS MISSY !

lesleysage profile image
lesleysage

Your own strength is there, but it's just feeling battered.... I'm like everyone else, in that this cancer really taught me that my feelings and thinking patterns link so closely with how my body feels in a 'chicken and egg' sort of way. Certainly those times we're low with chemos, operations, bad news etc. are the hardest to 'hold steady', not ask too much of ourselves, 'hunker down', take one day at a time, make no firm decisions if we don't need to and be as kind to ourselves as we can.

Jo-Jo mentioned about the Ovacome helpline support manager, Anna; as its not always straightforward to get hold of a professional listening ear, then those here who have talked with her sound to have been pleased they did.

Warm wishes for as good a day as possible, Lesley

Kryssy profile image
Kryssy in reply to lesleysage

Here here, Lesley. Anna helped to save me last year. xx

Coldethyl profile image
Coldethyl

Every cycle around days 5-10 I’d tell my husband I wasn’t going back for anymore - but I did - when the alternative is worse , you just have to pull up your big girl knickers and do things that you’d rather run a mile from- it’s not easy and I imagine having surgery in the middle ( my debulking was prior to chemo) is extra tough but we are all here to support you - I do think counselling would help as you are clearly struggling with all the negative emotions that a cancer diagnosis liberates - these are normal feelings but sometimes we need others to give us permission to feel lost, guilty , scared etc - you are not weak just facing a very difficult situation - sometimes I think all the cancer superwoman stuff out there really does us a disservice when the reality is that chemo is hard work and living with cancer is not one long marathon or charity launch event ! X

Welshandproud profile image
Welshandproud in reply to Coldethyl

Well sAid xx

Margiedolly profile image
Margiedolly in reply to Coldethyl

I went through this, too!

Hi sorry to hear you’re feeling so down but I do empathise I’m due to have 4th chemo next week and have only just started to get side effects after the first three treatments. So I have been quite blasé thinking I was doing so well and now I feel crappy and dreading next months effects. But I’m going to persevere and try to maintain my positivity because I have to and you have to as well. Take each day as it comes and when it’s bad rest and think tomorrow I’ll be better. Good luck x

Cropcrop profile image
Cropcrop

Aw lovely, I know just how you feel. This is the worst time with chemo, we’ve all had this awful feeling. You can do this, truly you can, you’re at a low ebb but it really does improve, honestly, you're nearly half way there now and then you can have your surgery so that’s a big positive step in the process. Speak with your oncology team if you’re really struggling, they can help you through this and we’re all here for you too. Big hugs and love ❤️Xx Jane

Sunfleury-UK profile image
Sunfleury-UK

I used to feel really rotten at this point too. Its really tough but do try and remember that you felt bad last cycle and then things improved. They will do again. If you kept a diary last time, have a look. If you didn't do jot down something everyday as it will help in the future.

In the end, I decided to just take one day at a time (or hour!!). Do what feels right for you whether that's staying under the duvet, or making it to the sofa. No pressure on yourself- if you have only enough energy to do one thing, do what is right for you. I had times when it was make food or shower but not both- food won!

Keep drinking plenty though as its easy to become dehyrated and this can make you feel much worse.

If you can manage to sit outside then do. Deep breaths and look for one thing that's beautiful (this was very good advice given to me by a dear friend who had been through terrible times and helped).

You can always decide not to have the next round of chemo, BUT leave that decision for the future. I used to give myself permission to decide this. Even up until the morning of the hospital appointment & it helped to take some of the pressure off. I also used to see my oncology psychologist a couple of days before each chemo. It was good to reflect at that point. I remember you saying you were looking for some support nearer to where you live. Perhaps once you're feeling stronger (which you will) this might be worth pursuing? I was treated at The Christie too- they and Maggie's do have some excellent support.

Be kind to yourself.

Wishing you hope and strength, Sx

Hi, As usual I agree with the ladies we all understated how you feel and yes we could say how brave we are but I think it's more we have 2 choices take treatment or not.

I'm on my 6th treatment of Carbo/Caelyx in near 4 years and I must admit this time around I have thought about no more treatment, then I have lunch with my daughter or watch a movie with my youngest grandson and yes continue with the treatment as long as I can.

I know I will run out of options and till then will continue and who knows with the new trials and research hopefully what the future holds.

Take the advice from Yoshbosh be kind to yourself relax , this does happen arfter a few days as the chemo kicks to give the cancer a good kick in the butt think of it that way.

I hope you have good support take care Lorraine xx

Tesla_7US profile image
Tesla_7US

Manchestergal, Like every other person on this forum, I understand exactly what you are experiencing. I have had many times when I thought I could not carry on. Those thoughts have always passed quickly.

Nutrition plays a powerful role in your state of mind and ability to recover from chemo. The importance of hydration with electrolytes cannot be overstated. Plain water is not sufficient. I was told by my oncology PA to drink at least 2 liters a day of electrolyte beverage containing potassium, magnesium, sodium, calcium, B-6 and B-12 PLUS 5 grams of glutamine powder in every 8 oz serving mixed with cold water. I mix this up in half gallon bottles and keep it in the refrigerator. This is a MAGIC beverage. I also have my hands and feet covered with cotton gloves and socks, then covered with plastic bags and put into large bowls of ice cubes starting 10-15 minutes before infusion and continuing during infusion of the carbo, taxol and now caelyx. It has worked. I have almost NO neuropathy and the B-Vitamins keep me happy nearly every day! I know this sounds like a lot of work, but it has saved me from nerve damage. The glutamine powder is an amino acid that helps restore muscle and nerve that the chemo is damaging. Here's a link to the electrolyte tablets. Be careful to order the kind WITHOUT CAFFEINE. They will keep you awake all night! amazon.com/Nuun-Hydration-E...

Maus123 profile image
Maus123

Moaning is allowed and normal. Those are the worst few days. You will see, in a few days you feel much better again. I was in bed for a few days after the second chemo too, feeling like a wet rag someone forgot to throw into the wash. Just couldn't get up. But thankfully that passed.

Rest (although a small walk wouldn't be the worst idea, if you can manage), get pampered, eat what you feel like, and keep your bowels going e.g. keep drinking water.

If in a week you still feel like you cannot continue treatment, speak with your oncologist about options.

Hugs. Maus

Salmon45 profile image
Salmon45

Oooh bless your heart 💖 I agree with Vicky. It is normal to feel like this after the steroids boost. As Vicky said try and get out in the fresh air it works wonders when you are feeling low. You can do this brave lady.

Hugs and kisses

Maxine xx

tara108 profile image
tara108

I am with you and know what you are experiencing. Agree with all the comments. I tend to think ahead so am trying to train my mind to stay in every moment or hour! Often can't. but it helps when I can. Everything you descibe is very normal. Also for me, when my bloods are v low, I take a week off and make it up at the end! especially when I feel I can't keep going. We are all with you. Sending hugs from Australia.

marylondon profile image
marylondon

I echo all the very valuable support & advice you have already been given . Keeping a daily chemo diary is a good idea as you can then see how things improve at times & how you feel to tell the professionals. It’s all so alien & tough for you but hang on in there . Be kind to yourself- duvet days are allowed but also plenty of fluids , nourishing snacks & fresh air & a short walk .

Mary x

Neona profile image
Neona

Keep going! It's normal to feel like crap after day 3 or 4 but it gets better - for me after about day 10. It's horrid but you can do it!

Maxjor profile image
Maxjor

So sorry you feel as you do and as all others have said, you are specifically at the # of days post-chemo where you feel crappy physically and it drags you down mentally. I only had dark thoughts during those few bad days each cycle and as soon as I started to feel better, that feeling would start to dissipate. I think the key is to be kind to yourself and let yourself feel those feelings for a short amount of time, then continue to be kind to yourself by saying this won't last and VERY soon I will be feeling much better. Like a chant when down. As others have said, the mental part seems to be in direct correlation to the physical so you know you will start to feel better soon and with that, you will have the will and strength to keep going. (Mindless TV helped me when nothing else could!)

With hugs, oxox Judy

Sunfleury-UK profile image
Sunfleury-UK in reply to Maxjor

Its funny because I found mindless TV worked for me too. I have spoken to other women and we shared our 'guilty secrets' of which particular types worked. I'm not disclosing mine on a public forum! It really is a case of finding what works for you at the time & no guilt!!! Sx

Maus123 profile image
Maus123 in reply to Sunfleury-UK

Home improvement shows for me.. . oh gawd.. ;)

Xx. Maus

Sunfleury-UK profile image
Sunfleury-UK in reply to Maus123

That seems very sophisticated in comparison to mine! (definitely not confessing!)

in reply to Sunfleury-UK

I developed my continuing interest in Masterchef, which I'd never watched before, on my first line of chemo.....which sounds a bit more respectable than yours!

Sunfleury-UK profile image
Sunfleury-UK in reply to

O definitely.. I liked Masterchef before and after chemo. I seem to remember that food programs made me feel a bit queasy! Defintely not telling you mine Mac.. you'd be rightly shocked (as am I) ;-)

ellseybellsey profile image
ellseybellsey

Manchesterlady,

Just to let you know I am thinking of you, I understand it’s hard I am day 5 after infusion and I am struggling today.

My emotions are all over the place, crying saying no more, I am laying down at the moment as my body has so much bone pain, steroids are finished so I guess the buzz has finished.

My first line treatment was chemo prior to debulking surgery, then more chemo you will get through it, you need to do what you’re body tells you it needs to do, one day at a time. I have just checked my diary from 1st line,and I wrote

no more I can’t do this, I also noticed side effects are pretty much the same again.

I am going to try and have a walk in the fresh air tomorrow as I know this helped me first time around.

Remember we are all here for you, at your side.

Hugs Ellsey xx

Manchesterlady profile image
Manchesterlady in reply to ellseybellsey

Thank you for your reply Elisey

Laying down too at the minute . Feeling exactly the same . Keep telling myself , I’m not doing this again ...have to have the surgery yet then three more sessions . I ask myself is it worth it , for no one can say if or when it will come back . There are so many very brave ladies on here . I don’t know what I would have done without them these last few months . Let’s hope we feel better tomorrow.xxxx

ellseybellsey profile image
ellseybellsey in reply to Manchesterlady

Tomorrow is another day Hun.

Ellsey xx

Sunfleury-UK profile image
Sunfleury-UK in reply to Manchesterlady

Try to just focus on taking care of you now. You're doing great. Our minds try to deal with the future but its not the time just now. Peaceful distraction is really the key...

A lot of people find the adult colouring books helpful, some people knit, play simple online games or as said upthread mindless TV. It needs to be just enough to distract but not too much to tire!

There are also some good meditation & mindfulness apps online (Headspace is good as it starts with really little chunks. link here: headspace.com ). They're not for everyone though.

You will feel better, it may take a little while longer but it will happen.

Wishing you hope and strength, Sx

JulieP1986 profile image
JulieP1986

I agree with all of the above. By 3rd cycle, hubby was ready with the tissues and the shoulder to cry on once we hit day 4, the steroid come down day. The one just after New Year, I actually woke up crying with no explanation. Found after a couple of days I would snap out of it, give myself a good talking to and rally for the next cycle. Walked and got as much fresh air as possible. Keep going it’s amazing what you can actually endure that you never thought you could. Sending virtual hugs. xx

Deb52 profile image
Deb52

I’m sorry you’re feeling so defeated. I’m sure most, if not all of us, have felt like that. I’m currently seeing a counselor to help me through some of these feelings.

Manchesterlady profile image
Manchesterlady in reply to Deb52

Hi Deb , thank you for your reply . Is the counselling helping you ? Xx

Deb52 profile image
Deb52 in reply to Manchesterlady

Yes, I think it is. I’ve only been to two sessions so far.

Mptelesca profile image
Mptelesca

You are the brave one, lovely lady. 4th day after chemo for me is the worst. Seems like whatever euphoria I gain from the steroids blows up and I just come crashing down. Of course, we both know this is a temporary bump in the road. I guess the thought of the upcoming surgery is weighing heavily on your mind and, I'm sure, is why you are feeling so down. The good news is that the surgery is totally in the hands of your wonderful doctors and nurses. You will not have to deal with too much pain and the very fact it is behind you will help your head with the healing. Your mind is going through such a rollercoaster of emotions. We are always here waiting and praying for you. Wishing you a speedy recovery!

XOX

Marisa

Margiedolly profile image
Margiedolly

Dear Manchesterlady, Your post is so beautifully written, it brought back all those feelings and memories of my chemo experience. Hang in there! I'm so glad I didn't give up; I was lucky to have a good husband who wouldn't let me give up! Here I am 11 years later, in remission. My original prognosis was 6 mo-2 years. I took the bull by the horns and decided to be my best advocate. I got a journal; this proved to be highly cathartic. Also a special calendar to organise appointments and treatments.

I used supplements for chemo patients, and managed uti's with cranberry juice and lots of water. I ate pureed homemade chicken soup a lot, and pureed veggies. Also yogurt/fruit smoothies. Protein drinks.

I saw a counselor also, but the chemo nurses really were wonderful and compassionate. My family made all the difference, too.

As we all eventually conclude; it beats the alternative! I finally got into a study for Olaparib, a PARP2 Inhibitor that gave me an additional 5 years remission.

These wonderful women on ovacome have all kinds of tips that really help newcomers to chemotherapy! They are generous in offering their love and support as well!

We're all in this together; please keep us posted!

💖Margaret

amandanewe2 profile image
amandanewe2

don't apologise hun we all understand how you feel. i have my third round of chemo tommorow and i have found there is a pattern to how i feel; after day 8 post chemo i feel like a human again but everyone is different. I find the more i drink the more the symptoms get better. also i am having reflexology and reiki which really helps.

good luck hun

hugs

amanda xxxx

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