just thought i would check in to in to see how everyone is doing.
Im now on day 10, round 2 of FEC (3 x FEC and 3x T). I have to say that whilst the sickness was way better this time around I am afraid i suffered from mega bouts of diarrhoea followed by the last two days of constipation! What is going on with my stomach, I sometimes dread to think what these chemo drugs are actually doing to my body.
Hair on head is almost non existent and skin is getting very dry, apart from that plodding on with it all. Some days better than others.
Looking forward to a week and a bit of feeling reasonable before going through it all again.
I can’t believe though that at my next session I will be half way through....Yeah!
Well half way through chemo - still have radiotherapy, hormone therapy and bone strengthening injections to get through!
Best wishes to you all xx
Hi there, i started chemo 2 week's ago, i did not realise that you could go through so many emotion's in such a short space of time. The chemo it self was not as bad as i thought it woul be. Day 2 well i am sure that you have all seen the advert you know the ooop's moment well mine was more like the niagara fall's moment' i just lost control of my bladder' up all night going to the loo. No other sign's of anything but i phoned the unit anyway, blood's ect was given intravenous a/b and a course to bring home with me turn's out it was a water infection. Day 5 thrush. Mood swing's up's down's i just don't know tear's for no reason this is not like me at all hence the user name LALALAND because that's where i think i am. Now day15 my hair has started to fall out ah well i'm sorry to sound such a grump but just felt like a moan. ONWARD'S AND UPWARD'S LOVE AND HUG'S TO ALL
Hi Lovely Ladies,
Thanks Sue and Ktk. I'm not sure I could fast but I am trying my best to eat relatively healthily and drink lots of fluids....whilst having some treats of course! When I was suffering with nausea during week 1 everyone was encouraging me to increase my fluid intake even further......it didn't seem to help at the time but may be it would've been worse if I didn't drink so much!
Thanks Rosie14 for your words of inspiration; lovely that you are all still in touch 4 years later and a great reminder to us all that the light is shining bright at the end of the tunnel
Wishing everyone a great next few days...
Hi Lovely Ladies,
I hope you all maaged to enjoy the Bank Holiday weekend!
I was lucky as feeling good a couple of weeks after my first chemo (FEC). I had a meal out with family on Saturday and even had a couple of G&Ts!! And I had a lovely day out yesterday walking in the countryside and a pub lunch. All of this with my new wig on; it gave me a bit of a headache but maybe I just need to get used to it?
I was interested in the comments about reducing calories/fasting day before chemo - can anyone tell me more about that?
Thanks foe the PICC line cover advice - great ideas. I ordered a PICC line cover but have found that it slips down my arm.
I will be having my secod chemo (FEC) on Friday so for those of you who have had second session already it's helpful to read how you are all getting on; in the meantime I will make the most of feeling close to normal for a few more days!
For everyone having chemo this week, good luck! And for everyone else good luck with the SEs!
I think its very common to feel emotionally low around halfway through chemo cycle. You’ve just managed to battle through the physical effects and then when you get your breath back your mind goes into overdrive. Be gentle with yourself. You have had soooo much to process mentally and to go through physically.
I hope you can work something out with work, be tenatious. You have started treatment now so you can explain how it effects you and what you can do. They probably want to err on the side of caution.
If you feel you are up to the festival go for it. Its good to enjoy normal things. My hubby lives in Zurich and my oncologist gave his ok to visit him, days 16&17. I was worried and he emphasised taking temps, emergency antibiotics and get to a hospital etc. Probably worried too much, but that is natural. It was fine and it was lovely to do and most importantly took my mind off the Big C.
Morning ladies I’m on day 10 of first chemo and dare I say have returned to feeling somewhat normal physically sadly not mentally have had a couple of really low days but I know that’s to be expected. I had cold cap and hair still intact currently, skin on my fingers started to peel yesterday so creaming a lot more. My work have said no to working from home sadly and I need to see occupational health, I feel they would just prefer me to go off sick, I have spoken to an advice lime and they were helpful and sent me a good letter template to request reasonable changes to my work, I do a clinical job working with under 5’s which is is not good because of my immunity so will request working in the office doing some admin, going by the first chemo I feel I definitely wouldn’t be able to work first week but Weeks 2&3 feel like I could do some work maybe on reduced hours to try and get some normality in my life, I feel I will go stir crazy being at home🤪 I am hoping to go to a festival next weekend if I feel ok still? Bit anxious but feel it would cheer me up and in England so can easily get to hospital if needed, I have put PICC line off as they wanted to put in ready for 2nd chemo, I know it’s a gamble and really hope my veins hold out but just not ready to have something in my arm restricting me for baths etc. I will probably have it in ready for round 3 of 8. I don’t write on here that often but regularly read the threads and find them so comforting, wishing you all a good bank holiday weekend and hope the side effects are kind to you 🙏🏻
Good morning ladies!
i have just dropped in from the April 14 thread! I have come to offer you the assurance that this treatment will come to an end and although it takes several months for hair to grow back and to begin sleeping for longer it will happen!
I used to get up anytime between 2.30am and 4 am ! One morning at 5 am I was cooking meat and another I was washing the patio down at 6.00am! 🙀It’s the steroids that make you wakeful!
The treatment is harsh but there are thousands of us still alive because we went through it. Continue to support each other each step of the way and together you will make the journey!
5 of our ladies still post regularly and we have just had our 4th annual meet up!😃
Stay strong ladies for those that love you! 🌸
I’ve also resorted to DIY. I made some tentative attempts at something to cover and protect my portacath. Because
A) It sticks out a lot from my chest and hurts if knocked
B) people grimmace and comment when they see it, which is understandable but sometimes makes me a bit fed up -
Will have a better go when I’m feeling a bit brighter. The skull doesnt look half scary enough! They are padded and I stick them on with boob tape 😀
Good luck with changing oncologist, you just want to feel people are on your side. Mine wasnt at all helpful when I explained how ill I felt, thankfully I saw the oncology nurse when getting my bloods tested and immediately she was suggesting chaning the meds. Even walked down to see the pharmasist to see what would be better to swop. I was happy to try ANYTHING
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. 😡