Robin - ive just seen your comment re phlebitis- I agree with mooney ring unit and talk through picc options. Also if u cant see anyone quickly it may bf worth going to local pharmacy they might be able to advise some sort of antiflammatory cream or ? Reg ibrufen?
I’m also day 2 post EC2. Or is this day 3? Can never remember how they number the days. Have just swallowed the multitude of tablets we have to take. I feel marginally better this cycle than I did with first cycle. Not sure if it’s because this time I drank plenty to try and flush it through, or if because I had essentially fasted before having the chemo (because I was feeling so bad from low neutrophils and gcsf jabs I had lost appetite). Not looking forward to gcsf again! Out of interest - when do people tend to take? I have been told take from day 5 for 5 days but it just seemed quite early in the cycle to take.
Egg
Lindieloo - I was also awake at 3am! Bloody steroids!!
Robin - Hirudoid cream.Other people in other threads have used it and felt it helpful for vein problems. I haven’t used it myself but others recommend it.
Lighthouse love Holkham, one of my favourite places.Not sure where to go in Suffolk. Have been to Southwold and Dunwich many years ago, but we have our caravan back, yeeeeay! and we are looking for somewhere to relax and have good walks and a beach. Anywhere you can recommend.
Interesting hearing your Tax issues Jackie. Can’t say i’m looking forward to it!
I am feeling well and almost normal, well apart from the spotty itchy scalp, finding it hsrd to eesr the wig! Not looking foward to being knocked back next Tuesday with 3rd chemo!
Love to all
Mooneyx
Hi lindie no I meant the gcsf injections. I have to take those from day 5-day 9. I have 3 days of steroids to take from day 1-3 and it’s two lots of 4mg.(8mg total) I try and take both before noon so that I can sleep but on chemo day as they give it to me IV in the afternoon it’s impossible to get to sleep afterwards. I hate them!!
A bit off topic but I’d appreciate your thoughts and opinions.
A friends partner, who is a professional photographer, has offered to do a free photo shoot for me, OH and son, which was such a lovely gesture it made me cry (not unusual with all the drugs at the mo!) I just don’t know when to do it. I’m a chemo first girl and still have surgery, possible further chemo and rads to go before I even start thinking about reconstructive surgery. As much as I fancy doing a defiant Sinead O’Connor bald headed photo, it feels like it might be tempting fate a bit if that makes sense. I have visions of it all coming back after a year and me looking at the photo thinking you cocky stupid idiot. What would you all do? Thanks x
Wow, what a nice offer, Scotty.
If it were me, I’d probably go for it now. I think the whole defiant/cocky attitude is going to be something that you will value later on. You could wait until you’re back to ‘normal’ but hair wise that could be 18 months (assuming 4 months chemo, up to 4 months to start growng, then some length). But only my opinion, and I am all about instant gratification!
Ali xx
Thanks Ali
I think it will be good to get back in touch with the defiant me I used to be and remind myself who I really am and that this version of myself is temporary x
Hi Egg
On tax, I have 16mg of steroids a day for 3 days - the day before, the day of chemo and the day after. The gcsf injections I have from day 2 for 7 days!!!
Hi Lighthouse
I am cold capping. I have had 2x T so far and like you, am shedding madly. Im vacuuming clumps every day! Every time i touch my hair, some comes out. I’ve lost probably 30 - 40%% of my hair already and do have bald patches on the top of my head which im covering up quite successfully with something called toppik. It was important to my children that I looked as samey/normal as possible which in their eyes includes my hair, so I plan to continue cold capping. Like you say, it may just be delaying the inevitable but every extra week of my own passable hair is an extra week of same/normal to the children. And also, thinking positively, its always possible that i might not lose any more! I must admit though, my hair and what to do about it occupies a lot of my thoughts and to some extent, not cold capping might have been better for me, mentally!!!
Evening all - jackie fortunately no experience of that se on chemo sorry not sure what advice to offer apart from standard cream/pessery again could a pharmacy advise? Mooney we camp in tangham rendelsham forest - very basic site but great for getting out to lots of places walks immediately off site, two castles short drive aways, Aldeburgh for fish and chips various river walks sutton hoo viking ground. So lots to do if u r up for it. Not sure ifcthat site opdns until late march but i guess if you google around there might be something. Egg my gcsf plan is also day 5 to 10 and i understand that fits with the physiological growth of the white cells/neutrophils so guess its not too early in the cycle but i wonder if different regiemes need it to be at different times? Scotty photo now i reckon! Lindieloo - i am doing well today ty manage to cook dinner/washing out etc but all in my pjs ! But im not waking at 3.30 to be fair! Blue2 and Beedot agree re children that is the only reason ive attempted the cold cap as my youngest is struggling with the idea my hair will go. My shedding didnt really start until day 20 of first cycle. I did find it more painful this time as i guess my hair was thinner so guess i will take it a day at a time but the shredding is driving me crackers! Have a wig (boxed and not styled yet) so do have a back up plan.just got to get confidence to wear it and must learn how to tie a scarf im so ungirly its going to painful! Love to all hope sleep comes easier to you all tonight xx
Hi Scotty
I am not sure what I would do.I definitely could not do the brave defiant bald photo. I am not brave or defiant enough to have a bald photo.! However I think I would like the idea of a photo now. So i think I would have one now and one later. Not much help Scotty!
Mooneyx
Tou’re as decisive as me Mooney! Thinking I’ll have family ones with the wig and maybe have a bald one solo. Hate having my photo taken - too self-conscious! Mooney - when do you get the lump checked? Another thing that seems to differ by postcode. My g-csf are on day 3 for 7 days.
No idea Scotty. My cancer was a recurrence it returned in the lymph glands in my arm pit. So i have had a full excision of all my lymph glands, chemo then radiotherapy then hormone therapy. The surgeons and oncologist are very positive it’s treatable. So… no lump to measure all gone. Just catching those pesky stray cancer cells.
First time round excision of lump then radiotherapy then hormone therapy. So chemo all new to me and a bit shell shocked by it all to be fair!!!
Love and hugs
Mooneyxx. xx
loody hell. Hadn’t realised it was a recurrence. Or rather don’t seem to retain info in the sieve that is my chemo brain.
Haven’t said too much about it Scotty so probably you didn’t know. Know what you mean about chemo brain though. I often wonder if I had had chemo first time round if it would have recurred. So happy to throw everything at it this time to get rid of the beggar!!!
Mooneyxx
Mooney, you and I have that in common too, chemo buddy! Mine too is a recurrence - I had DCIS and a mastectomy in 2007. The recurrence discovered last September was in the armpit area, just under my scar. (So, ladies, even if you have a mastectomy, stay vigilant.)
I am feeling upset today. I had to go back to the hospital for an ultrasound following the MRI scan I had done before chemo began. They keep saying they keep finding ‘things’ which may be nothing but they have to check. Today the radiologist found a lesion in the right breast (all my treatment so far has been for tumours found in left breast) and she took a biopsy of it. So now I have to wait for results of that.
I’m feeling sorry for myself. I thought going through chemo was bad enough but now it’s back to scanxiety and waiting again as well.
I’m trying to stay upbeat. It may be nothing. And if it is something they’ve found it early and I suppose it just means another operation some time (I had my surgery in October to remove tumours on left side).
But I’m going away this weekend - it’s my father in law’s 91st birthday and we’re going to a family party in York. Everyone is going to be asking me how I am and I was going to be able to say ‘ok’ as this is my good week in the cycle and the SEs have pretty much gone. But now I’ve got this hanging over me.
So I’m miserable today. Thanks for listening. R x
So sorry Robin and Mooney. Hadn’t realised you had both been through this before. It just sounds to be never ending. Fingers crossed for you Robin. Surely you’ve had more than your fair share of the shi##y luck card. Enjoy York. It’s lovely. Might be snowing this weekend… Must be the morning for wobbles. First one for me for a while. With me being chemo first, I can feel the lump all the time and am getting slightly obsessed about whether it has shrunk (it hasn’t I don’t think) It messes with your head being aware of it. Just want it cut out and gone - for now. Self indulgent whinge over! x
Thanks Scotty. It does help knowing we are all sympathising with each other and understanding what it’s like. I feel for you having to have chemo first before surgery and can quite understand how you must feel. While the oncology teams obviously know what they’re doing, I think only we patients understand the psychological nature of the different bits of treatment we get. I felt exactly the same as you - the crucial thing to me was to remove the tumours. When I was diagnosed last September but the team seemed (to me) to be very relaxed about giving me a surgery date, I felt like taking out a knife in the consulting room and cutting the area out myself! Thinking ‘well, at least that will get their attention’. Stay strong and I will try to as well. R x
Hiya everyone. It’s been a little while since I posted but I have been reading all you have written and am still routing for us all.
I am now day 6 of Fec 2 and the chemo fog is finally lifting. Definitely took more out of me this time, fortunately the sickness was definitely better thanks to being given Aprepitant, if you are struggling with nausea ask for this.
I totally get the hair issue, I did cold cap for 1st round, mainly because my children were worried about what I would look like without hair but prior to 2nd round my hair started to shed quite a bit and I found it more stressful having to constantly worry about it and not being able to wash it properly that 2nd time around I decided on the day not too bother and feel so much happier now that I have control of my hair back. I have had it cut short but although it is still shedding I am still sporting a pixie cut, though think by the end of next week I may be on to wig stage.
Big hugs to everyone.