Hmdhelen, thank you, looks just the joband good reviews too!
I'm hating my wig at present, the ends feel frizzy and dry, they don't look it thankfully. Thinking of changing my forum name to Mrs Frizzywig (apologies to Charles Dickens!)
Apologies, I'm about to have another moan. I've just been to see the oncologist, it was a different one, this is the third different oncologist I've seen in four meetings, I'm a bit fed up! This one informed me that T is highly toxic and I must take the massive amount of steriods I've been given as I questioned the dose. I did stupidly tell him that I had a constantly grumbly stomach due to the steroids and he said "why do you think it's the steroids?" because the last oncologist suggested it might be!!! He told me to add Gaviscon to the meds I've already been given. I didn't want to ask any more questions so we just left,.
Can't wait for next week now and the "highly toxic" T 😞
Re: hats, I've got this one: https://www.amazon.co.uk/LILYSILK-Womens-Sleeing-Bonnet-Mulberry/dp/B012ER5I6M/ref=sr_1_7?ie=UTF8&qi.... It's great - really comfortable, warm etc.
Tbird, looks like you are paving the way with your T this Tuesday, good luck with that and I hope everything goes well (and you have nothing but good things to share!!).
Kateday, I'm with you, I've also had trouble on FEC, not much respite from SE's and feeling constantly ill, oh and the bleeping constipation!!!! Since the last round I've been dragging myself around the house and keep feeling faint, I'm guessing my bloods will not be great this time 😞
I also have the sore arm, I did have very prominent veins in the elbow joint on both arms but the one on my chemo arm has disappeared to be replaced with a bruisy coloured patch, hope it returns 😞 Can't fully straighten my arm now either and it's the one I use the most. Had a fair amount of discomfort in my arm following the second round of FEC, but round three was much less painful. I'm now finished with FEC, so if it is the E causing the vein problems (thanks for the info there tracybev!), I'm hoping for arm and vein recovery from now on (now drinking extra water all the time to assist with vein recovery 😉 ).
I've had a rough weekend following my last FEC on 27th, very spacey and lethargic. Still having the occasional stomach gurgles and plenty of wind, but appetite back to near normal so I'm thankful for that.
My wig has had a wash, I was quite anxious until it had dried that I may have killed it and would have to go around with a frazzled lump of nylon on my head, but it turned out fine. The ends feel horrible though, might have to give it a condition on the ends only.
I may need to treat myself to a new sleep hat, has anyone purchased a nice silk one, and if so are they any good?
Oh, and does anyone know when hair regrowth starts, I've heard it can start on T so I'm hopeful of some stubble by the end of January, fingers crossed.
Hi Sals I'm still doing ok since starting T on Friday, no nausea actually forgot to take any anti sickness tabs as haven't needed them !! Although I think SE tend to kick in on the 3rd day mainly joint and bone pain....😱😱...will see how I am tomorrow !!
it's the injections that I have the problem with have a really full uncomfortable feeling above my ribs have been given lansoprazole and gaviscon which doesn't seem to help much.
I also have pain along my arm, the nurse looked at it on Friday and said that it's cording of the vein and it's from the E chemo ( the red one !)
Hi Sals, I have also had arm pain since my 3rd dose. Not at the cannulea site but mid forearm that went up to the bicep but it is easing after nearly 3 weeks. If it is red and swollen it should be checked cos yes it can be phlebitis or possibly a clot. Mine I think is cording as the vein seems to have shortened. Fortunately my other arm is still usable but it doesn’t bleed well, but will have to try that this time x
i had pain in my hand and forearm from the chemo starting in cannula site, I told doctors about it on several occasions I even went to assement unit because the pain was getting that bad. I saw my oncologist Friday who said it was Phlebitis and told me to use ibuleve gel which I have and am now getting some relief from the pain. I am also having a PICC line inserted tomorrow (so nervous) for the rest of my chemo treatments because my vein is that sore. Sals ask your chemo nurse to use your other hand this time then ask your oncologist to refer you for a PICC line.
i am starting T on Tuesday and am so scared of the Unknown SE's again 😰😱
Love Tbird xx
Tracybev, Glad to hear your treatment went well, fingers crossed that it carries on that way! Xx
Yep I have my PICC line flushed in the Chemo ward every Thursday, and when its treatment week they also take bloods at the same time as the flush. Would have been nice if they’d checked my numbers beforehand, and phoned me to let me know, to save the trip! Not to mention the extra steroids they injected into me! Ah well. Hopefully I’ll sleep a little better tonight? Not feeling tired yet though 🙄
Sorry to hear your first T has been put back a week but like you say it's nice to know you will feel 'normal' for another week.
Went very well today feeling ok with no side effects yet but will take each day as it comes 💪.....only had about 15 mins sleep last night 😲 doubling up those bloody steroids meant I was wide awake still don't feel that tired tonight !!
Do you usually have your bloods done on chemo day ? I have mine done beginning of week about an hour before appt with consultant so they are back for him to check its ok to continue that week 's treatment
Kateday, I had horrible constipation after rounds 1 and 2. If the senna doesn’t help, my oncologist prescribed Movicol, which worked wonders for me - it softens things up so it’s not too painful to pass (sorry if TMI 😳) Or if it’s awhile before you’re due to see your onc, it might be worth trying your GP, mine have been really helpful with prescribing stuff like this!
Tracybev, did you have your first T today? Hope you’re not feeling too bad xx
Sorry to hear your treatment has been put back Harkes, it must be so frustrating and very painful having shingles.
to all others starting T this week I'm having my first T Tuesday 8th and am so 💩💩 myself, but at least we will be all in it together and can swap tips on SE etc, and for those who have to wait another week we can share tips with you. I think starting T is like starting FEC for the first time again, it's the fear of the Unknown ahhhhh.
love Tbird xx
I am supposed to be having my first cycle of T next week but has now been postponed because I have got shingles! After spending most of Boxing Day in A & E with a chest infection this just caps a sh***y festive season for me. Hope the T goes better and good luck to all of you.
Hi pigeon, I'm from the Oct '17 thread. When I had T I was told to take the steroids morning and lunchtime/afternoon to avoid being kept awake at night. Saying that, I wasn't told that at first and I'd thought I'd better space them out as you do normally with tablets and I still seemed to sleep ok, but perhaps I was just lucky! x
Tracybev, looks like we both have our first T tomorrow - best of luck, I’ll think of you when I’m there.
Well, I just got back from having my bloods drawn and PICC line flushed.
I popped in to the hospital pharmacy to ask for advice regarding the steroids, they said to try to space them evenly in the day - morning and evening.
Then the nurse who did my flush/bloods said to take them morning and lunchtime/aftermoon, and avoid taking them after 4pm so they don’t keep you awake - she said when I go in tomorrow for treatment in the afternoon I should have had both doses.
So if we include last week’s nurse, that’s three different sets of advice I’ve had! 🤷♀️
Today I’m stuck with lunchtime and evening, because I didn’t take them this morning, but tomorrow and the next day I’ll take them morning and lunchtime.
I asked the nurse about it when I had my PICC line flushed and she wasn’t really sure, but suggested that the day before I take 4 with lunch and then 4 with evening meal - since it says “24 hours”, and that keeps it somewhat close since my trealmente is at 14:30. I wish my instructions were more clear 🤔
Do your instructions say to take in the evening on the day of chemo as well?
I have my blood test today and first round of Docetaxel tomorrow, and as happy as I was to see the last of the FEC, I think I’m more scared now than I was before my first round of chemo. I’m really dreading it! 😱
Just have to keep reminding myself that we’re halfway through, chemo will be finished before we know it.
I had my last EC on NYE (rock n roll) and move on to Docetexal (spelling?) next. I too was given a lovely lot of steriods to take. My instructions say to take 4 with breakfast the day before and 4 in the evening the day before, then 4 the morning of the chemo itself - not sure if this helps you or not.
I have my bloods done on the same day as the chemo so I'm a bit concerned that I'll be as high as a kite and "fail" my blood test then have to start again!
Given that I'm only getting about 4 hours sleep a night with the steriods for the EC I'm not looking forward to the increased dose.
It seems like the side-effects are less with weekly T, and the research papers show better results for it so Im going to take the weekly option event though its logistically more challenging to get to the clinic weekly. So im keen to here your expereince with it.Im behind you other November starters as Im getting 4AC before the 4 T( or 12 weekly) so I still have 2 doses of AC to go - next one is on Friday
Wishing all of us a happier and healthier new year ahead. Half way through and thought I was coping well until New year's eve hit and all the posts about the coming year on Facebook came out, all a bit too much when you've just had 3rd chemo and feel rubbish after injections. Just as I was getting used to taking each day at a time again, the thought of the whole year rolling out in front of me was a bit too much to think about.
Anyway the dawn of the new year this morning made me feel better to shut the door on the last few months of 2018.
We can do this, we're half way through. Wishing those of you moving on to the next stage lots of love and a smooth ride. I'm probably moving to weekly chemo - don't know if anyone else has been offered this? 9 weekly instead of 3 x3weekly which my oncologist recommends. Apparently I don't have to do the injections which is a big plus for me right now.
Hi November ladies, here's hopefully to a happy and healthy new year to all of us
Like you Liloc, I didn't make it to midnight as was wiped out by my final FEC, which has proved to be a strong one
Hoping for an easy transition to T and continued best wishes for all of you
I have my first T on Friday the 4th, I was also given the big box of steroids to start the day before, 4 pills per dose, double what I was given for FEC. Dreading them as well, as they also make my face round, hot, and flushed, trouble sleeping, etc... but the nurse said it’s to help prevent a reaction while the T is being injected.
Bit confused about them, because it says start them 24h before chemo, but my chemo is in the afternoon - so am I supposed to take a dose in the afternoon and then a dose at night?? I’ll never sleep!
im not sure if OH has found this forum and read my posts but all of a sudden he has become attentive caring and has even made me a couple of cups of tea, it just makes things so much more bearable.
Holeinone, I start T 8th January so hopefully it will go well. I do feel a bit nervous like I did before I started FEC but I'm sure it will be all good.
Ladies Happy New Year, this year we kick butt xxx
Harkes, so pleased you have cleared the air with your OH. Really sorry you found yourself in hospital on Christmas Day, that is pants
I think as a rule we don't do ourselves any favours by trying to carry on as if nothing is wrong sometimes. I've just had my third and last FEC (so it can now FEC off!) and although it knocks me off my feet I've done two loads of washing and all out on the line, washed my wig (first time, hope it dries well!) and washed up. Now I'm paying bills online when all I want to do is sleep.
Third FEC went without a hitch after me passing out in the chair during no 2, same nurse so I think she was pleased there were no more dramas from me!
Anyone about to go on to T chemo? I've been given a huge box of steroids to take pre T. Wondered if this is normal? I'm having bad reactions to the steroids and this is 8 pills to take the day before I have my first T, when I have terrible trouble with just two a day (reduced dosage) think I need to chat with onc at the pre chemo appointment. My face flushes up and burns badly on two pills and I am once again having trouble sleeping, and my heart races away, think T will be trouble
Stay strong ladies
So happy you had that cry and talk it does help. We did have that talk after a huge row on the day of my 2nd chemo, I think I shocked him with how I was feeling and my black thoughts, we both cried he said he would try more to think of me and for a few days he did.
I suppose I don't do my self any favours because I always show my strong side and try to do everything myself. I sit watching Tv with OH sometimes thinking I would love a cup of tea but haven't got the energy to go into the kitchen, I don't ask him because I know he will do it begrudgingly and I don't want it like that, I want him to offer.
Like with you Harkes it might be the age group I'm 63 and OH is a very young 73 who still works 3 days a week helps with grandkids etc so perhaps it's a case of old dog new tricks ha ha.
Im going to try the talk again and see how we go.
Love Tbird xx
Glad to hear I am not the only one with problems. Did manage to get him to talk to me this afternoon after I burst into tears. Like your OH he finally admitted that he is frightened he is going to lose me and all the other things he does are a distraction. We had a really good cry together and I think that is what we needed as we haven't done that before. He is quite old fashioned and believes he should be strong all the time. He has agreed to stop spray painting in the conservatory and is putting an heater in the shed. So some progress!
Hope you manage the same. I don't know whether it is an age thing, my OH is 63? I have decided to stop telling people I am managing and just say " actually I feel like S**T"
Sorry to hear you had a bad Christmas, on reflection we probably all did but painted on our smiles and told everyone what a lovely day we were having but really screaming inside.
My relationship with OH is under strain, all he seems to do is shout at me (I think he thinks that if he shouts loud enough the cancer will go away). I really feel like telling him to move out until this is all over, the only time he has hugged me since my diagonosis was when my sister shaved my head. OH has moved into spare room and although I'm surrounding with amazing family I feel so lonely (I'm awake half the night so it made sense for him to sleep in there).
i have tried to talk to him about how I feel, explain little things like making me a cup of tea (no he doesn't ever do this) every now and then would make all the difference but it's like talking to the wall. I try to understand he's frightened (not that he has told me this) and feels out of control but a little kindness goes a long way. Hopefully we can ride this out without me murdering him.
keep strong you're not on your own love Tbird
Good morning all,
Well had a s**t christmas, in A&E on Christmas Day - got a chest infection and felt like death warmed up. After a couple of doses of IV antibiotics they let me go home. Have had a bad night, lots of negative thoughts about OH, had a real go at him yesterday. He is like an ostrich, he buries his head in the sand and hopes the problem will go away if he doesn't talk about it. It is a good job the daughter still lives at home because if it had been left up to him I would weigh about 6 stone by now, all he says is "I can't cook". The problem is because since I retired 5 years ago I have done EVERYTHING in the house and he has not had to think about it, he goes to work - and that is his contribution. He has an hobby - messing with meccano, which seems to involve spray painting a lot of little items, as you can imagine this doesn't help when I am feeling sick. Has anyone else noticed a deterioration in their relationship? Am sat here typing this and the cat is looking at me wanting to go out - at least he is consistent.
I've had exactly the same happen with my filling, I already had an appt to see my dentist for a check up after I'd started chemo he looked at it and as it's not causing me any pain he's happy to leave it until after I've finished chemo, but it's a good idea to try and speak to your dentist to see what they recommend.
i hope everyone is keeping fine. Can I ask has anyone had any problems with their teeth during chemo, I have just had half my filing fall out (I think I swallowed it) and was wondering if I can have treatments whilst on chemotherapy. I can't contact my oncologist because of the holidays and assement unit is not answering.
love Tbird xxx
Hello lovely November ladies, and new member Rowan welcome to the gang,
Also sending good Christmas wishes to you all and hoping you are all well enough to enjoy the festivities.
Have a great day.
i hope you are all having a lovely day. My family have been brilliant and spoiled myself and hubby rotten.
Hope everyone has managed to avoid hotel nhs. Have a lovely day eat nice things and rest (you can do it all next year).
love Tbird xx