Thinking of you today marina xx
Not with it, it is definitely fair to say. (Took over half hour to type this)
Can’t concentrate, so tired. Didn’t takr steroids on sat on advice from nurses on chemo unit. Ended up with more fluid build up around reconstruction site than usual. Took 1/2 dose steroids yesterday and today and seems better.
Spoke with onc on phone today re higher dose steroids. Not 100% clear what he was on about so gpong in next Tuesday to see him to discuss further. Think basically the higher dose steroids he wants me to take is the lesser of 2 evils so less risk of allergic reaction. How the hell is my body supposed to cope with that. My heart goes fluttery and funny on them and my stomach cramps as come off. More my heart I am worried about.
Hi Debbie, yeah sounds like we are having similar problems. The not being sick on emend but still feeling sick I think is the best we are going to get it. My advice go straight home. Chill on the sofa, and when you get the warning signs of the wave hitting go to bed and sleep through it. I was in bed from 2:30pm Friday until 7am when the alarm went of for my youngests antibiotics. Woke up feeling a little better. Also the day before, day of and a couple of days after make sure you drink a minimum of 2 litres of fluid. It seems to help. I make sure 1 litre of mine is a homemade veggie/fruit juice. Got a nutripro juicer for early Christmas present and it really seems to help. Didn’t get time second one to make one, felt awful still but 3rd with juice and emend not quite so bad on the sickness.
Although not sure if it is due to juice or to the fact I am taking cbd oil. Took 3 drops before chemo instead of 2 like last two and this time has definitely been better for sickness. Been taking 2 drops everyday (when not feeling sick) since diagnosis.
Hope this makes sense. Any questions let me know.
Marina hope it went ok today.
Tina I hope you are ok. I am dreading the T and the whole change in medication. So so worried about those steroids. Guess Gillian will be able to tell us more after tomorrow and recovering for a bit.
Gillian you are definitely like our fec t leader in this one. I hope it goes ok.
Thanks for the hugs with my melt down friday ladies. Your support was much needed. So anxious about the t I am sure I will need it again at some point. Couldn’t get through without your tips and support.
Hugs xxx
had bloods today ready for Thursday . due to being metastasis i have double fec but as this time i have been pretty poorly i am not having a double lot but a normal does .so pleased to hear this . tho been warned that next lot will knock me for six . oh eck .
Thanks for the pep talk Gillian. Didn’t know about the sickness bits you say are on the emend website but that would make serious sense for me. I told Leo it was like morning sickness, drunken sickness and travel sickness all rolled into one!
How are you coping with the steroids other than that. I am having issues with what I have now let alone the higher dose. Have started a thread called steroids, side effects and docetaxel to see if I can get any help with it as it’s a big problem for me. Especially the palpitations.
Hope it goes well for you tomorrow Gillian
Hugs xx
Aye Gillian, when I went for my first meeting regarding chemo I asked for the super strong anti sickness, they didn’t want to give them to me as they are pretty expensive but as soon as I said that I get travel sick in the car, and how I bruise around the eyes due to how bad I vomit after a few drinks. Even mentioned how someone turning round fast can set me off, and she was like yep you definitely need them. Do I’ve been on emend since the very beginning and even though I still get nauseous I’m not throwing up-bar the first day of chemo!
I also get heart palpatations with the steroids red Robin, so I’m also concerned about T.
Anyone who is cold capping and on fec t - do we have to do it the whole way through T as well? Because I honestly dont think I can deal with it past my fec!
I think so as some people loose hair with the docetaxel too. I will as it has worked quite well for me and I don’t want to loose what I have managed to save so far. So worried about higher steroids. Need to get my mind off it all so I can sleep. Had third zoladex injectors today too. Feeling so emotional but think thats because I feel so c**p.
Xx
Tina where are you living right now?is there someone close who can call in for a few hours to be with you? I have no idea how to pm on this site-can’t find the options.
You have gotten this far, look at how much you have accomplished! 3 Fec!! That shows how strong you are. Could you do me a favour today? Could you find something that would make you smile, listen to music or watch a favourite show or movie. I really wish I could give you a proper hug and help out, but since I can’t, those are the only things I could think off.
Oh Tina you are too far away for me to visit! I’m down south of England! If we had been closer I would have come and visited xx I know what you mean about not showing your family how bad it is, I tried that at the beginning but it made people think I was grand and being amazing at all of this and it just made me feel even more of a fraud. So I just laid it out straight to my close family and friends about how bad it is and how it makes me feel defeated, like I can’t continue with treatment during the early days, that I feel so pathetic and less like the strong person that I want to be, that they imagine me to be. This has made them more aware of my changes - and hasade them become more motivational. There is no longer the dismissive comments about the chemo because they think I’m doing that well that I don’t need to talk about it. Instead now I get support, I get questions and they motivate me. It’s not all about cancer or treatment, they make sure that I think about the future, even it’s just meeting up to go window shopping etc.
After the last chemo- which I really struggled through, especially with partner being away and having my mum here (who is great but as you now know I’m pretty ocd about my house etc) and certain SE’'s were worse, I have told all my friends to just visit whenever they want. Before I was strict saying can’t see me until im my good week mainly because I didn’t want them to see me at my most pathetic , but that last experience made me realise I need to share, they are my rocks and I need them.I will probably try and keep most of the sadness away and like you said, wouldn’t want to cry in front of them, but I think the real good friends need you as much as you need them. Plus it stops them from being worried about me and thinking that I don’t want to know them any more. -not saying this for you to do, just letting you know that i understand the emotions- and then of course I got carried away, this place is like soup for the soul with all the off loading I do!
I’m so very happy you have your husband and daughter this month, it should help you, having physical contact from loving people or even pets produce the happy endorphins and by golly we all need that!
At lest you are up, washed and dressed Tina, I’m still in my pj’s and I’m on my good week! That shows a strength of character that I hope to mimic with my next fec. During those early days I can’t even dress or wash. I admire you xx keep it up and enjoy those little accomplishments. Hope the hubby is providing lots of cuddles xx
Oh Tina. I want to come all the way up there to give you a big hug. I know the feelings. Having much of the same with the hot flush symptoms. Can’t believe how bad they have been. Also my temperature doesn’t seem to want to get much above 36.3. It was 35.7 last night which usually happens first day but didn’t for some reason until then. Is your temperature normal when you get these flushes?
The steroids with fec are to mainly help with sickness effects apparently but I found they also helped the fluid build up (seroma, if I spelt it right) around the operation site. I can only tolerate half that dose and still getting palpitations.
The steroids for the t help prevent allergic reactions to the t. My onc said that it can affect the blood pressure, he is worried mine would go too low without them. It also helps stop a lot of other hypersensitivity allergic reactions apparently. Not sure what like yet. Will know more after spoke with him on 9th.
I think we are getting to that hard point again as it is a change of regime again with all new meds and side effects. I too am very scared again, you are not alone.
If it would help I can pm you my number and we could have a chat. If not now when you have no company. Don’t think I will be back to work for a little while yet as still feel much the same as you do.
Big hugs for you Tina xxxx
Nadz and Tina I know what you mean about not showing people how bad you feel. I am lucky in that I have my fiancé here at least on the evenings and weekends. Although last night I showed him how I feel, told him how worried I was about the t and the steroids and it ended up in both of us feeling rubbish and an argument which wiped me out. We are both feeling so frustrated by it all. Sometimes I feel I shouldn’t say anything about it to him as he is trying to cope with it all too and because I want to try to keep things as normal as possible for the boys. Sometimes I hold it all in, then I explode in emotions. Also feel after loosing mum 10 years ago like I can’t show my dad or sister exactly how bad I feel too as don’t want to put them through the mill again. They both did very badly after loosing mum and I had to be the strong one holding everyone together, especially seeing my eldest was only 14 months old too.
I really don’t feel I can cope either a lot of the time. Leo made a comment last night of you’ve done the fec just don’t do the t if you are too worried and that made me worse. I said I might as well slit my wrists then as it would be as good as saying I won’t be here in 10 years time as it changes all the statistics we saw if I do that. That got him all upset because he thought I was having bad thoughts but I wasn’t. I was just upset at the comment and because I couldn’t think fast enough to put it better it came out in an extreme sentence. This all sucks I know but on here at least we can talk about anything that is worrying us to each other and sometimes people have tips and ideas that help too.
Not showing emotions to protect people we love or ourselves is what makes us human but here we can. We’re all in the same boat.
I want to thank you ladies for all the support so far. We can get through this together. We are all here to help you Tina xxxx
Feeling grotty today and I would welcome some wise words from you. I’m on AC and so I think that only one of you is having the same drugs as me.
Today is day 5 after dose 3 (of 4) and I had hoped to be more or less back to normal as usual. My white cells/neutrophils were a bit low the day before chemo and so they had to retest on the day and decided to go ahead with the chemo. I’m wondering now if this was a bad idea but I too was keen to get it over with.
Today I have a lowish temperature 36.4 ( normally always over 37.) I took it after I thought I was going to faint on the loo when I got up this morning and had to lie down! Then I sneezed once, coughed once and blew my nose, and tried to tell myself it was nothing to worry about. Then my cheeks and chest flushed red but temperature still normal. Then I straightened my arm and ouch - a painful lump in the vein in the crook of the arm where they took blood the day before chemo. The 5 other puncture wounds in my hand and lower arm where they tried to get the cannula in all look colourful but don’t hurt at all. And now I feel queasy and there is phlegm in my throat.
So many minor minor things that I would normally ignore but are making me anxious, especially as I’ve not had them before or not at this stage. I wanted to go out for a short walk but I don’t even have the nerve to do that in case I feel funny again.
All in all, a bit down and the lack of sleep doesn’t help. Advice please, fellow travellers!
Good to know you are feeling not too bad so far. Sounds like you have had less steroids than my onc wants me to have in the 24hrs before my 1st t. 4 x 4mg tablets twice a day, so thats 16mg twice! Seems a lot.
Hope you carry on feeling not so bad. Btw I have lost a stone since my op in October. Don’t want to loose any more so eating pasties too.
Vicky x
I wish I wasn’t. Can’t seem to stop it. Think it must be the medication or the stress or something but it won’t stop. I would rather be putting it on so more to absorb the poison so hopefully didn’t feel so crap. Think me loosing messes up the dosage more.
Also means if I want to loose the expander implant I will have to probably put weight on so I can have enough there to use my own tissues to do the op.
I am now 8 stone. Much more there won’t be much left of me to treat!
It’s madness!
Vicky xx
Hope everyone who have been feeling bad/low are feeling a bit better now, it all stretches out in front of us like it is never going to end! I find just getting out a bit helps when you can, doing ordinary things like going to the shops or just posting a letter. This whole cancer and s**t treatment is so ‘de-normalising’ and turns you life upside down…no wonder the tears flow! Then as you say Tina, there will the the fear and dread every mammogram from now on, I’ve even begun to worry about my next smear and I don’t even know when it’s due!
Went for bloods and assesment this morning (FEC 3 due Thursday) and mentioned my arm felt a bit ‘bruised’ and pointed out a vaguely red spot abou the size of a £2 coin with little hard lump in…she said I have to see my GP. So went to GP and she agreed with chemo nurse that it might be ‘cellulitis’ and put me on antibiotics. Phoned the chemo unit and they say I can’t go on Thursday because you have to have been on antibiotics for at least 72hrs! They contacted my oncologist and she has said next Thursday, the 11th! Not happy as this means (assuming I don’t have further delays) that I will be getting my first T on my youngest daughters 21st birthday and also, I will also probably have to cancel my appointment with the special I have for 17th Feb about my prolapsed bladder as I will be right in my low immunity after the FEC 3! I’ve got an appointment with my Onc tomorrow, so I will ask whey I have wait a whole week.
Oh well, it could be worse but I just want it over with and this delay it drags it out longer! ?
Amanda x
Yes Tina. Feeling the same. Just want to feel better again.
Hugs xxx
really worried as due to all the seeping i do my fec is being tweaked for my last one. i would rather keep to the normally lot , i am worried that the tweaked one will have an effect on my further health as i wont be getting the full treament and it wont being doing the right job… my last bit tomorrow at two and so worried as i am scarred it wont be working as well as my last too. i have no one here to talk too. or share my fearers with .
Hi all, hate seeing us all suffering. Just remember, the end is when we can live again, get back into activities that will make us happy, lose or gain the required weight. We have all come so far, with people on their last fec and even starting on the T. We are here for eachother, we have bonded through this. Fredflowerpot talk to us about it all.
Tina and Vicky I know it’s hard to imagine it now, but think of the good week that’s coming, write down something each day that you want to do during the good week.even if it’s just being able to have someone round for a cuppa!
Amanda I’m so gutted for you that it’s changed the date for you but at least they are treating what is needed and aren’t taking any risks by just going ahead. (trying to think of the good points)
I am getting very anxious about this Friday,I’m trying to prepare again, learning from what my last cycle was like. I have a goal…my friends have organised a girls night for next sat…I know it’s very soon but I’m going to be thinking healing thoughts just so j can go out with them. Despite being at low immune then I am really hoping il be OK. That night out is going to push me through the horrible loss of self,fuzzy head,and pain.
I know I’m saying all this stuff and that come my day 5 I will be on here talking about how I hate it all. I just need…we all need…to think of something to get us through it. That’s my dream anyway…that something will help us
Nadz you are so right. Thank you for your positivity. You have made me realise I am mopping a bit. Will do better to think positive. I lost that for a bit. So unlike me.
Don’t think I am going to make it back to work for Friday at this rate but at least it means I can look after myself and have 3 extra days before returning. (See trying to find the positive side already!)
Fredflowerpot talk to us hun. We’re here for you. They know what they are doing. Peoples bodies react differently to these drugs. There is no one size fits all so they are just tailoring it to you so it fits better like a custom made suit or dress. It’s still there doing its job. They wouldn’t let you down on that. They seem to always start these things higher then come down if necessary. My onc said it may be that way with the t and the steroids.
Hope everyone else is doing as well as they can be.
Think of something positive like Nadz said.
Hugs xx
It’s good to get it out Tina. I feel a little bit better today. Less flushing in the day, more at night now. I have found I am so susceptible to the cold that if my head gets too cold it seems to make the hot/cold flushes worse. I think my body is struggling to control my temp a little especially with less thick hair to keep my head warm. Always have been one who feels the cold though.
I can’t imagine doing this without Leo. I wouldn’t cope either. You are such a brave lady. Could they not give him some time to come home and look after you or a post on a local base just for the time being? It is quite exceptional circumstances after all.
Keep strong Tina. Sending lots of big hugs xxxxx
Ok Tina. As long as you are okay hun. Pm me anytime if you like.
I think you are amazing doing this with him on tour, as are all the other ladies doing so.
Vicky xx