Hi all you Lovely Ladies,
Just catching up after a few days...
Kip - I hope you are feeling better and are home very soon.
KtK - Sounds like I am on a similar path to you, 3 cycles of FEC and then 9 weeks of T (I will also be having Herceptin). Pleased to hear you are getting on so well!
AMB67 - Loving the Sigourney Weaver reference, made me smile....especially as I shaved my hair this afternoon!
SB1610 - Totally understand where you're at with the hair loss thing. I took a decision to shave mine today after the very first signs of it coming out last night. Not easy but I felt better afterwards. We are all different and should do what feels right at the time. I have the same fears about wig blowing off but will test drive the new wig tomorrow, first stop will be the hair salon to get the fringe chopped.
JacB - I washed my wig yesterday (decided to wash it before wearing it for the first time), I was a bit nervous but it looks exactly the same as it did before I washed it - result! And it's a helluva lot quicker than doing my own hair…....every cloud :-)
Georgie - Good news about the PICC line and I have my fingers crossed that you get some positive news about the parking....sooo frustrating.
I hope you all have a good few days and find time to relax and enjoy the BH weekend
Gosh..... not been on for a couple of days so just catching up with you all!
There are some ups and downs......bless you all.
Sorry to hear you are in hospital Kip, hope you get sorted and home very soon!
Georgie good to hear you got your pic line in eventually and hopefully it will save a lot of hassle for you now. Good luck and hugs going your way for the next round.
On the parking issue I only found out this week from another patient that if we take our ticket from the machine into the department we are attending be it chemo, outpatients or a&e the reception stamp it and we don't pay.
This is York trust so it obviously varies depending where you live.
Jude, like you am just coming up for breath after having 2nd FEC 2 days ago. It seemed to hit me like a brick wall 5pm that afternoon. More so than last time.They changed my sickness meds which they warned can cause drowsiness...that's all I need more spaced out than normal but they seem to be working. They also gave me lansoprazole for the gastric issues. Haven't had the hangover type headache this time but was awake 2am on the dot last night.
We basically just have to ride through this don't we?
Ktk it is encouraging to read you were fit to go out the day after your first T round. Let us know how you get on as I for one am dreading them.
Also lost most of hair now which started going on day 15 but have to say got used to it quite quickly. Was out and about with headscarves on last weekend and did not get too many funny looks. Got my wig too but there is so much more hair on it than used to so may only wear it for special occasions!
The chemo hairdresser told me no need to wear anything under the one I have and it doesn't feel as though it would blow off.
To cheer you all up....My OH said he thought he had woken up next to Sigourni Weaver in Alien 3 the other morning as my sleep cap had come off.
Hope you all have as good a day as possible.
love Amanda x
Hi ladies you all seem to be doing well. Im currently nin hospital withs neutropenia as neuts were 0.1 and temp of 38.2,. So please be vigilant of your temperature and call hotline for anything!! 😉
Yes Subee, I agree with Jude; I had my 2nd chemo today. During the hard days on your first cycle you can't imagine doing it again but by the time this time came around I faced it knowing that the side effects still do go eventually and you have better days. Mine are 3 weekly.
Thanks Jude, I will try that with the breast care nurse. The Macmillan lady said they are constantly asking the hospital bosses to give chemo / cancer patients a break. I spent £17 on parking this week, and one was for the park and ride as it's cheaper at £2.80 but more hassle.
All went ok today with the picc. Much better than digging for veins like usual... so the journey begins for another three weeks of surprise time bombs to go off. My hair has all but abandoned me but I am enjoying scarves and accessories 🤗. Sleep well all xxx
Went to have the picc line checked this morning.
Waited 10 minutes, line checked in 2 minutes.
Ventured on to the reception desk to ask about parking charges. The 'best we can do for you is £15 a week love'...... 'how many times do you come a week?' I told him that this week it was 4 days in a row. Other weeks only once or twice. 'Oh no then love, I don't think it will be worth £15'.
I ageed and went to pay the charge. Not 'appy. 😡
please check with with your chemo unit about the car parking. I know all NHS trust are different but the hospital I am under - North Middlesex doesnot charge for patients undergoing chemo.
Worth asking the question!
Thank you all for your encouragement and understanding.... it helps to have buddies here who 'know!'.....
I will indeed go to the hospital reception desk tomorrow and ask about parking charges! The number of times we have to go per month is quite considerable isn't it.
Love to you all, and especially to those with poisoning this week 🤢....
Thanks for the advice. I hear you re the SEs. I was prescribed Omeprazole for heartburn and it seems to have worked a treat and Benzydamine for sore mouth and that has helped too. I plan to 'brave the shave' as soon as I see signs of it falling out.....not too long now.
You poor thing, sounds like you've had a right time of it! The PICC line has worked well for me so far so hopefully you will start to get the benefits from it soon.
I was surprised to hear about the hospital car park charges - where I go the car park has a Reg No. recognition system and I have been told that I can give my Reg No. to the reception and they will sort it for me, otherwise I agree it will become very costly!
Pleased to hear you are over the worst and feeling better.
had my PICC line put in today..... eventually 😩.
First time they thought all went well and well and commented on how relaxed I seemed.
Had X-ray but was then called back to the picc room. It had gone into my neck instead of down into chest and heart area.
Second and third attempt, still in neck.
Fourth time around, in place and confirmed by X-ray. They did say I was rare though... 🙄 Trust me! It is usually quick and painless......
I now now have a very sore arm, and have to go to the hospital aGAIN tomorrow to check the dressing..... so 4 times for me this week, including chemo on Thursday. The hospital car park is doing very well; today was £6.90 as was there from 1.15 to 5.15. Wonder what it will be on a full chemo day?....
but it is nice to come on here and chat to others who know what a picc is, and to see that we all have our various struggles and muddles.
Hi lovely ladies,
Hope you are having a good day.
Jude1962, yes we all seem to be having very similar SEs don't we and like many of you I am hoping that next time round they change the anti sickness so the SEs are not quite so bad. I even ordered sea sickness bands today as heard on another forum that they may help...worth a try!
I have a question for anyone who has started to wear a wig. Is a wig liner sufficient or is tape needed to keep it on securely? I will be losing my hair soon and have my wig ready but have visions of going outside and a gust of wind blowing it off....it landing on the neighbours dog who runs off with it...okay over active imagination!
Also, how do you know what your neuts are? Nobody has spoken to me about this but may be that is because I have only had one chemo session so far? I am at the hospital tomorrow for PICC line care so can mention it to them then.
Thanks...wishing you all well.
Onwards and upwards.
4.2 for neuts for starters was good. Mine were 3.2 .
They were 1.54 yesterday so still dropped a fair bit even with injections.
Waht it is the cut off point for not having chemo?
I had porridge this morning and just had a cheese roll- so far so good!
just a quick message about work. I also want to try and get into work and restore some normality in my life and to think about something else .....but also looking after me while I go through this long tough journey.
My work have been great about my work pattern over the next few months. I am basically not working the first week after chemo and then the second week I am doing bits and pieces at home, if I feel up to it. Work basically told me not to come in during the second week as low immunity week. The third week i am aiming to go in for a few hours each day. I did actually feel tired the third week and I was surprised how much it took it out of me.
I would of thought an nhs would be pretty good in supporting you through.
You may already know this but as a someone who is going through cancer treatment you do fall under the Equality Act and as such employees do have a duty to make reasonable adjustments to your working life...so bear that in mind! Also pop and see your GP and get them to sign you off but fill in the sections about reasonable adjustments - work from home and reduced hours when feel able to do so...
Hope this helps.
sorry to hear the drugs didn’t work.
I was put on another one yesterday and that didn’t work either! I also had 3 bouts of sickness last night.
Feel a bit better today and not been sick since 4am, so hoping the 3 different type of anti sickness drugs which I have taken this AM will do the trick. Just feel nauseaous now but munching my way through the ginger biscuits!
I have the pleasure of those self injections to do later to boost the white cells.......joy....
Anyway, 2 sessions done 😀 4 to go....😀
Hi ladies they called about pic line yesterday and I have delayed it till I need it and I can change my mind if I want so I will see how it goes, thanks for all your advice it really helps 😊 admire the lady who has worked right through I’m on day 6 of chemo and just started to come to life a bit it’s really taken it out of me. Looks like a nice day today might venture out, have a good day everyone.
Hi Augusters.. been to gp today and gave meds for oral thrush so hopefully will see some improvement soon. The best bit of advice i had on here is do not suffer in silence! If you have hard SEs then callcall hot or nurse as they have all sorts of meds to try. Push if you have too this is hard enough without pajn and sickness! Big hugs .kip xx
and Multitasker, yes I have picc going in tomorrow. Not looking forward to it but am told they numb the arm. Will be having next chemo on Thursday - like everyone I am wondering what this will be like compared to last time. Like others, I have not found that the oncologist is very empathetic or even shocked or 'sorry to hear....' about the treatment side effects. Today I asked her whether she knew about the hospital stay for sepsis, and she said 'of course, but that's quite rare but like the other side effects, is one of those things.....'. Not impressed.
I pointed out that I have lost weight since last time, and she said that she might slightly reduce the dose because of this.
Sometimes I wish they could see us during treatment - or even feel the side effects for half a day - but we must press on mustn't we.....
love to all and and best wishes for fellow chemo-ers this week.
❤️❤️❤️ G G
Sending all my love and best wishes to everyone having chemo this week.
So glad to hear you are feeling a bit better this week Georgie Gee. Do you have your Picc fitted this week too?
Second EC on Friday for me. Really not looking forward to it after how hideously ill I felt overnight last time I had it. Saw omcologist and have to say he wasnt very empathetic. He said first one sometimes bad bc its the first time for the body and subsequent are better?? - I’ve not heard that from anyone else but bow to his judgement. Hope the nurses might have some suggestions.
The weather looks like it will be a lot cooler than last time so will be curious to see how that affects the nausea in the days after. Hopefully in a good way 👍🏻
Good luck ladies 💋💋💋
I have a PICC line too, my first chemo was 11th August so not had it very long but so far so good. It is a bit of a pain keeping it dry during showers and baths but I'm already used to it. And no pain at all. I'm sure I will be glad to have it removed when my chemo finishes after 18 weeks but I think it's worth it.
Morning ladies I am now day on day 5 of 1st EC chemo, side effects are fatigue, acid indigestion and feeling nauseous, all of them manageable just have to listen to body and rest when it’s telling you to, I managed the pictures last night with the family and fell asleep through the first hour but at least I was there with them. Waking up at 4-5am and manage to do a few jobs in the kitchen which makes me feel better. I am due to have a pic line inserted before next chemo but am dreading it as don’t want to have anything attached to me until I really need it, one of my pleasures is having a bath in the evening and don’t want to have the bother or keeping my arm out etc, I was going to discuss with my BCN but wondered if any of you had any thoughts or experiences with this? Also hoping to work from home as I do a clinical job and not good as my immunity won’t be so good just waiting to hear if I can as do. Not want to stop work altogether on this journey as enjoy it, I know I will have down days where I cannot do as much but hope there will be good days too, any advice on working would be helpful too, I work for oxleas nhs foundation trust just been transferred over so all quite new to me. Wishing you all a good day and SE’s are kind to you x