I know it’s easy to say,but do try not to worry that much. The not knowing is def the hardest.
If your the kind of person who needs to know everything, i would ask the doctors for all your reports. YOU ARE ENTITLRD TO THESE!, don,t let them fob you off. I wasn’t given my reports and now find that i can’t remember most of what i was told and am constantly frustrated because i,m at a stage where i need to research my own diagnosis. I,m in the process of trying to get my reports now.
Been trying to think of things that i,ve really needed while having chemo and i think the only thing i,ve needed everyday is lipsil, my lips are sooo dry.
First day of normality into fec 2 today, so I make that 8 days of crap then human again then… Haven’t stopped all day, shal probably feel it tomorrow. Went into purposeful mother of the year mode today insisting the children only eat healthily, they have been rubbish lately I know it’s been a tough few months and I have been really soft, too many sweets and ice creams… Eldest son s complaining of tooth ache and has an evident hole in back tooth so it’s a tripmto the dentists this week. So have been cooking all day, all good stuff except for an amazing chocolate fudge cake which I iced with chocolate ganache and the boys went crazy with choco curls and smarties, it really was delicious…
Felt so bad when youngest was having screaming abdabs about having to eat something he didn’t want and I lost it, so determined he would be healthy…" if yo don’t eat your fruit and veg you will not be big and strong… And you don’t want to end up looking like this do you!!!" pointing at my shiny bald conker head!!! I burst into tears and had to rush out of the room… Horrendous…
Arm still really sore, am contemplating asking for a picc line, not sure my little vein is up to another 4 sessions of brutality…
Silvershar- my only things I can’t be without so far are laxatives!!! Lol… Tonic water which I drink by the litre, and salty foods the first few days, and it’s true for me pineapple tastes delicious and is about the only thing tha does for a few days. Other than that just listen to your body, everyones different and you’ll know wha you nee d when it happens. Yes, it’s not pleasant but it’s doable and the days will soon turn into weeks and it will fly by.
Love and hugs to everyone xxxxxx
Silvershar, I found that nibbling little bits of fruit helped keep my stomach settled in between and that I mustn’t go too long without a nibble or a light meal. I don’t normally eat breakfast until I’ve been up for an hour or more, but in the days after a treatment I needed a something like fruit or biscuits as well as a drink when I first got up.
Glad you’re feeling better, Sarah, even if still emotionally fragile.
Oh, I should say I wore my wig out for the first time today, and people were nice about it. It was a bit itchy after a few hours, though. I’m trying to get used to it gradually.
Well done cheryl on going out in your wig for the first time. I collect mine on wed and I just know that if I have to wear it then it is going to be a major hurdle for me on that first trip out. So well done.
Silvershar - try not to worry about what’s ahead of you. Just deal with each stage as it comes. The treatment itself is not too bad , it is the subsequent days that can be a drain. just be assertive when it comes to making sure you have enough/ the right medication to manage the side effects from the treatment. In fact be assertive throughout. I hadn’t realised I could have a copy of my medical reports until just seeing a recent message on here. I am going to ask for mine as I cannot remember everything about my results. I found that I was in a daze for the first 6 weeks and just went along with the flow. It has only been since fec1 that I have started to research and question.
Lastly, build in some nice activities for your good weeks. You can always cancel if you are suddenly not up to things but it is nice to have things to look forward to. I found that my Friends thought i wouldnt be up for going out so I have taken charge of organising social activities.
Cheryl i,m going to take a leaf out of your book and try to wear my wig for a short time tomorrow. I think if i don’t do it soon i never will. Why is wearing a wig a bigger deal than being bald - i just don,t understand myself lol.
Sarah i,m sorry you,ve not been so well. Wouldn’t wish sore veins on anyone, but i,m relieved i,m not the only one. I knew we were likly to get sore veins, but i was under the impression that it was much further on, not after fec 2.
No taste at all today. B****r, I love my food. Had lovely food day planned, hardly ate anything - waste of time. Grrrr
I don’t quite know where the reluctance comes from. So far I would say scarves and hats are more comfortable over the stubble than the wig and the wig felt warmer after a while. I wear glasses, which conflicts a bit with the ear pieces.
I haven’t lost my sense of taste, but I think it is impaired. I find myself putting more salt on food than I normally would, then only tasting the salt. I’m going to try lemon juice instead, on veg at least.
Keep trying with the wigs! I’ve been wearing mine for longer each day and now can go about 6 hours. I now prefer it in public places, but use scarves/hats at home or with friends. I don’t like anyone seeing me bald even my OH.
I am Fec 2 day 13, taste impaired and VERY sore tip of tounge, which means I’ll be seeing my GP this week. Have been using Biotene toothpaste and Difflam mouthwash since start of Chemo.
Morning fellow wig wearers.
Mine is getting an airing today as I am popping into work for a short visit. The longest stretch I have worn it is 2 hours. It gave me a slight headache last time. I wouldn’t want to adjust the tightness though, even though the wind has dropped today. Re sore mouths I would recommend corsodyl non alcohol mouthwash 3 times a day. A bit pricey, but well worth it as I have had no mouth problems so far. My dentist recommended it. Look after those sore arms! x
Feeling much better now - even mamaged to go to the theatre in Milton Keynes last night where DH’s band were playing in a concert in aid of Marie Curie Nurses. I was totally shattered by the end though. My first outing in a headscarf!
I’ve got sore veins as well. I had FEC2 on Wednesday and they were sore that evening but then OK. However last night my arm got sore again and is now.
janipi - my ocncologist has prescribed the Corsodyl mouthwash for me and has given me four bottles, so it’s worth asking and seeing if you can get it for free!
I wonder whether heat would help relieve sore veins. It’s recommended for pain following PICC insertion, and I was told to keep that arm and shoulder warm.
Happy Valentines everyone, Hope you all have someone special in your life to make a fuss of you today, even if it 's a friend or relative. I,m sending you all love and hugs today x x x
I,ve been asking around about the veins and yes i think your right Cheryl, heat is supposed to help. Mine seem to be settling down a bit now.
Just back from oncology appointment prior to FEC3. The Onc I saw today thinks my dzzy spell a couple of weeks ago was probably low blood pressure and reminded me about extra fluids, which I’m doing anyhow. In theory, extra fluid around that time will mean my bladder is less irritated and I won’t have to jump up so suddenly. She has also put me on the 3-day steroid prescription rather than the 2-day one, so we can see if that helps.
The nurse who took my bloods also repositioned the little clip section of my PICC, cushioned it and gave me a different dressing as I had developed a sore red spot where it was pressing on a part of the adhesive.
I hope everyone is now cruising into the good period.
Am feeling great at the moment, but yesterday i grated my thumb while making a cheese sandwich. Great! day 11 as well, couldn’t have choosen a better time. So today is spent watching my thumb, is it going red? anti septic cream? manuka honey? should i phone doctor? Anyone not on chemo could not understand the dilemas of a very small cut, they would think im mad lol
Cheryl i think your very brave, you seem to be dealing with you picc very well. Think that’s why i,m reluctant to have one - can,t cope with a sore thumb never mind a picc line.
Do you see your onc on a different day to chemo. That seems like a better and more logical way to do it. I see onc 15 mins before chemo, which really doesn’t give youn much time if you have any problems. Especially when doctors late as he was last time. Saw him for about 2 mins last time.
Yes, Maria, the drill at my hospital is that you see the Onc and have your routine blood tests at least one day before a chemo session. It’s a big centre, so different Oncs have different days for this and I suppose this helps them to organise the chemo sessions as well. I don’t have far to go, so that makes repeat visits more feasible.
I’d certainly take extra care with keeping your thumb clean–I sliced a finger at a similar stage, and nearly panicked at the bleeding. I stuck it under the tap to make sure there was no dirt in the cut and then put a plaster on good and tight to keep it clean and kept it covered longer than I normally would, partly because things like typing hurt. I know exactly what you mean about the worry, because all yesterday I kept wondering whether it was all right to wait for today and looking to see whether the sore spot looked infected or not.
Three chemo nurses advised the PICC, so it would have been foolish to disregard their advice. I wish I didn’t need it, though.
hello cheryl,
im due for fec 2 next tuesday, ive been fine with the first one, just a wooly head but no sickness at all
how did your 2nd one go? did you have more se?
thankyou
Donna
xx
Hi Donna. The Onc changed my steroid prescription for FEC2; 2 days at a higher dose instead of 3 days at a lower dose. I had no queasiness at first (instead of just a little queasiness), but had palpitations and shaky hands, so I asked to have the dose changed back.
I was suddenly exhausted and shaky a few days later, had to go to bed and had a bad dizzy spell when I got up to go to the loo in the night. The Onc thinks this was probably low blood pressure and that I need more bed rest in the first 1-2 days. This, of course, is very individual–my bp has been at the low end of normal most of my life in any case. Over all, I would say I needed a little more rest this time, but by week 2 I felt fairly normal, just needing to rest every day. I did have some signs that my blood platelets might be lower than normal, but not in the danger zone. Things like a cut finger bleeding longer than I expected and bruising easily, nothing serious.
So all in all, I would say I felt it just a bit more, still no sickness, but I needed more rest than with FEC1 especially in the first week. I know I’m still pretty lucky compared to some.
Cheryl, thankyou so much for your quick reply,
i took one steriod x3 a day for 3 days, so im sure my prescription will stay the same next week,
how was your veins?
I so hope its just the extra rest i need as thats no problem for me, i just hate the thought of feeling nausea,
ive been very lucky with fec 1, and i know we are all different, but i do hope all goes well again next week.
Donna, I had FEC1 directly, but the PICC was inserted before FEC2, because the nurses thought I would develop vein trouble otherwise. I had an AC, so they can only use one arm and also I’m a bit older than a lot of you. I didn’t actually have any vein trouble with FEC1 or with any of the blood tests.
