I'm just coming up for air after day 2 after 2nd chemo proved more exhausting than last time. Nausea and in bed by 6pm. Did a bit of browsing online for how to make picc line covers, but nothing that really helped.
In a moment of inspiration, I suddenly remembered that I had some long leg warmer style socks!
So I cut the toe off of one of them and slid it up my arm😬... I even have the heel of the sock in place on my elbow 😂....
I thought that might be helpful; I do think the picc line covers online are expensive, so I am still looking at actual leg warmers online now (remember, that would give you 2 picc line covers as they come in pairs.....). Found some for a fiver on amazon prime, so they are coming tomorrow, as are my daughter and fiance..... my daughter begged me to get something, as looking at the line when my flimsy hospital bandage comes off regularly, she also feels sick!
Am now finally downstairs and managed a light breakfast after anti sickness dose.
I did request emend from my oncologist, but she refused it, and advised a double dose of what I had last round, as early morning treatment.
I have asked to change oncologist. Too many doubts about being on a conveyor belt, and not allowed to make any suggestions or ask questions and now not allowing emend.... as I have said before, I would love to swap places sometimes with an oncologist such as mine (now previous I hope) for even half a day, and I think some of the arrogance about their status might tone down a notch or 500!!.... am I being over- reactive?
thanks for reading..... and for the picc ladies, try the leg warmer sock idea if you have any..... 😉😘
Thanks Sally, thats reassuring. I dont want to rush off and get my knickers in a twist!
This time I have the same anti sickness and you and they seem to be working fine today so far. I am very flushed but I have seen from other posts that is quite common.
Glad to hear cold capping is working for you. I wanted to give it a try as its at least one thing I can do to help the treatment. I feel that so much is out of my hands and you have to go with the medical experts.
There seem to be alot of us getting used to wigs this week. I suppose one silver lining to rainy BH is less sweaty wig heads. 😂
Best wishes to everyone who had. Chemo this week. I had my second EC yesterday.
I was really nervous after the reaction that I had last time. The Chemo nurse suggested trying a different anti sickness drug as the first one might be the cuprit for the really bad stomach cramps I had. I also tried to reduce my calorie intack the day before (no way I could fast!!) and used a new focused breathing technique. It all helped a bit, still pretty brutal but an improvement.
I was wondering what your EC dosages are? Im have 4 EC followed by 4T. I was reading up on side effects and noticed my dosage looked high. I may be worrying about nothing. I have IDC grade 2, sentinal node affected but others clear. Lumpectomy with level 1&2 node clearance.
i am getting 180mg of Eprirubicin, followed by 1200mg Cyclophosphamide every three weeks.
Sadly despite using the cold cap my hair has nearly all fallen out. I was feeling quite chuffed in the early weeks and then Literally day 19 is started to shed big time. Its nearly all out on, the postive side I guess it will make treatment time a bit shorter.
Really wishing you all a good bank holiday weekend - aghhhh cant believe august is nearly over 😬
Hope you are ok and start picking up soon.
I am the same with the 2nd round, feel like have been hit by a brick wall, taking all my energy just to get dressed today.
Hoping for sleep tonight but fully expecting the 2-3am wake up.
good night all !!
we can do this .......
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....😀