Well a pretty uneventful couple of days healthwise. I suppose I'm now in the low immune system part of the cycle so am keeping away from busy places. I wonder if the same things will happen for every cycle or if the effects ease off or get worse. Would be nice to know.
If laughter is the best medicine then I've overdosed this weekend ! Gogglebox and Eurovision ! Me and my virtual friends were having a ball on FB and Twitter!
Facebook is a lifeline for me ,I have friends who make me laugh and support me from all over the world,some of whom I've never even met ! I can also keep in touch with my mum who is in a home following a major stroke 3 years ago easier as she has an ipad and I post photos and funny stuff on her page.
A lot come about through shared appreciation of music, and I was fortunate to meet many of them last year at a 're-union' in Barcelona, so as long as you are careful with what you show in the public part Gill, you'll be ok. You don't even need to use your real name or a photo.
I like the idea of the FB page as we can show photos and it's easier to relate things, it's nice to put a face to you too.. I'll still post on here too though.
No difference to my hair yet ,I did use the cold cap. I think it's around day 15-18 that I'll notice if it hasn't worked from what they said.
I just wish I could lose weight ,I seem to have ballooned in the last months. So annoying as I was doing Slimming World until Feb and had lost nearly 3st !
I noticed this morning when I ran my hands through my hair that quite a few strands came out. I did try it again in case it was a coincidence but the same thing happened again! My scalp has been itchy and now a bit painful for the last few days but I wasn't expecting things to start to happen so soon as only on Day 11. I know for me total hair loss is probably inevitable as I chose not to do the cold cap but nonetheless I promptly burst into tears at the prospect!!!
On a positive note most of my other probs have been resolved thankfully so hoping for a good few days before the next session on the 21st. Hope you are all enjoying a lovely weekend. I've has such a good laugh at some of your posts and am thinking of going down the Burkha route too!
My daughters have set me up on facebook but at the moment I haven't worked out quite what to do with it! Can't ask husband for help as he's dead against it - paranoid over security !! Also I have a slight concern - I have found looking at this site so informative and useful that I'd be sorry if others going through all this crap aren't able to see our journey and tips and queries - I've turned into a stalker of the previous month ladies just to see what's ahead ! What do you think - am I worrying unnecessarily ?
Sorry you couldn't sleep Barbersdrove - agree use painkillers if you need them, although Codeine never worked for me as it was too strong and made me feel faint in hospital. Last night was my first night without painkillers (on day 12 of FEC) and I feel like I slept ok. I also find eating a bit, such as a few crackers before bed helps have better sleep. Hair cut and wig fitting tomorrow and I'll post some pictures on our group facebook page. There are a few of us in the facebook group now and it would be great if all of us were on there.
By the way, just had a thought - is everyone aware that you can apply for free prescriptions for 5 years via a form from your GP?
Have a good day, Lorraine x
Well, 5 days on from upset tum and diahorrhea and I still cant eat anything without running for the toilet .My tummy is gurgling away, I think I must have some really over active bacteria in there that have a party when some food arrives ! I have rung my chemo nureses but they said as long as I am keeping hydrated, just to ride the storm.Period has finally stopped after 12 days....I think? 🙂
Ladycroft, although I am using cold cap, I already made up my mind not to have a wig if I do lose my hair.I figured with it being summer during the bulk of my treatment and I have a hot head, I would just buy myself an array of pretty scarves and bandanas....lol at the burkha part to cover mouth and nose as well...not a bad idea.
On the positive side I am losing weight which I can afford to do !! A hell of a way to diet though ! xx Ruth xx
Hi Linda - I have had an itchy scalp for a couple of days so when I had my line check I asked the nurse if that was a signal of impending hair loss. She said she wasn't aware of the itching but that other ladies had reported having a painful scalp. I've got some meds for thrush but hasn't worked yet! Hope this doesn't happen each session.Otherwise feeling quite good all in all. One of my daughters has a cold so is avoiding me which seems quite sad - I looked on Macmillan site and says vulnerable from day 7 to day 14.
Well done for survivng work.
Have a good weekend, Gill X
Barberdrove, so sorry to hear of your experience, hope you're feeling as ok as you can at the moment..
New one ladies anyone's head itching??? Heard this happens when its about to start coming out, surely it's too soon for that yet? Also got thrush both ends now.. what joy !
I too will use the excuse of low immunity to get OH to do the shopping this weekend, so we do have some highs!!? Must say feel a bit more normal today, only slight fuzzy head and have managed to stay at work.. going home in a minute. Have a good weekend xx Linda xxx
Wow Barbersdrove - that must have come as a huge shock - also to anyone who may have accompanied you! Glad it was tackled so efficiently and precautions taken to prevent it happening again.
I'm on day 10 now and apart from mouth probs and thrush feeling so much better (hope I'm not speaking too soon ). Getting out the anti bac as I believe this may be when the immune system is at its lowest.Could be such a good excuse to send OH out food shopping so as to "avoid crowded places" ! !
Hope all of you are getting on as well as poss,
Best Wishes, Gill x
I am on day 10 after 1st FEC and also been on a really bad period for that entire time.Also suffering with diahorrea/sore bottom and sore mouth. So because of period and number twos, I am not eating much and therefore feel wiped out. I am worrying that I will now get these symptoms after each FEC,the next one being due May 20th.
Up until day 7 I was doing ok !
Hope everyone elses ailments settle down soon, I think as Ladycroft says, our tune should be we are all in this together !! xx Ruth xx
Hi Lucia ,
sorry to hear it's been so bad for you. It has affected us all differently. I was ok just tired and ate ok ,sleeping though is hard . I wake every couple of hours to pee or with a heat headache . I heard pineapple is good to eat ( apparently there is a an enzyme in thats good for inflammation of the joints and mouth Bromelain is also being tested in cancer trials in the USA so it can't hurt !)
I think most people feel better soon as the poison get out of your system so the anti emetics help. Eat what you fancy ,I had ginger marmalade on toast or cinnamon bagels when I got up,if you look back through the early pages of this thread ,you'll find our experiences ,if it helps.
In the immortal words of the Wildcats song from 'HIgh School Musical'(surprisingly apt lyrics mostly -don't know why it popped into my head!) -'We're ALL in this Together....'' cheesy but I love cheese.
Take care xx Jan
Lucia - things will get better for you - I am on day 7 of my FEC and actually feel ok and have for the past couple of days. Even able to cook tea, and take girls to various activities, although I did forget Annabel's golf was not on and she phoned and asked where I was. Luckily school not far and she can walk home -age 10. I do find I need to eat every 2 hours to avoid the sick feeling. I'll have to get bigger clothes soon. I had some fresh pineapple yesterday and it tasted great and have ginger nuts just in case.
Barbersdrove - I was told take steroids at 8am and no later than 2pm - when I took them at 4pm I couldn't sleep. Do you have to take more than two doses a day?
Sheryl - it's great to hear you're out of hospital - hope you get the treatment started soon.
Ladycroft - had to laugh when I read your post about the limb!
Best wishes to all, just off to eat something. Lorraine x
Well, no sleep following taking the steroids at 9am and 9pm as advised. I've noticed that people say take the last one at 2pm but that would mean taking then at 2am as well, with food.
I have been drinking loads of water and also those dioralyte sachets, I will be glad when my number twos settle down ! It will be good to have a good nights sleep tonight without running for the toilet !! xxRuth xx
I love that vision Ladycroft - you have a wicked sense of humour - just what we need!
Been to have my "line care" today and came home with a multitude of goodies for sore mouth . Have also had a visit from the Thrush Fairy - both ends, so a double whammy. Nothing seems to faze them at the chemo unit though and they quickly got a Dr to make me out a prescription. Guess there's nothing they haven't heard before and nothing seems too much trouble for them!
Cheers to you Sheryl - will toast you with my strawberry ribena laced with Movicol.
Hi Ruth - you must be having to drink loads to combat dehydration.Hope you are finding something tasty to get down. I'm struggling with fizzy drinks - too gassy at the moment. May you have a really good sleep tonight - you must be needing it.
Good luck tomorrow Barbersdrove and hope to heara how you got on soon.
Best wishes all, Gill
Glad to hear that Sheryl. I got a letter this week to confirm my visit to the limb fitting clinic on Friday and I have to take my old orthotic (whatever that is) device with me ! Always said another pair of hands wouldn't go amiss!
I have a vision of some poor soul waiting for a prosthetic leg sitting patiently in his wheelchair whilst being made to try on various drag queen like wigs . Wonder if they got the letters mixed up .
There told ya I was weird.
Onwards and upwards , x
I wonder why you still have your portacath in....I want mine out as soon as I get told its safe to do so, as I am aware of it all the time and it sits just at the point where my bra strap rests. xxRuth xx
You always make me smile 🙂 I have had the most awful night struggling with diahorrea...the opposite of you it seems . It has settled down a bit now finally,I think it was because I had attempted to start eating ordinary food that we usually have, where as last week I erre don the cautious side and ate blandly period still ongoing on day 10 now, what we women put up with at times ! xx Ruth xx
I have been done with chemo for years but still have my port-a cath. It only needs to be flushed once every 4-6 (dependant on doctor/hospital) weeks when not used
Sorry Ruth, it's a picc line not a portacath, it has to be done once a week. I ate half a pack of Haribo about an hour ago and have just 'been' for first time in days. Well that's a load off my mind lol !
goodnight sleep tight xx
I have just seen your remark about the nurse flushing out your portacath, is this supposed to be done then? I had mine flushed last Tuesday at the end of chemo session, but I haven't been told to get it flushed at all before next chemo due May 20th? xx Ruth xx
Hi Wax2014 and Ladycroft,
My period is still horrendous,worst one I have ever had. Its weird as I get a gush like a tap being turned on then nothing for hours then it happens again, checked with chemo nurses at hospital over the phone today, as I don't want to develop anaemia and find I can't have my 2nd FEC on May 20th. They said as long as flow is not continuous don't worry, but I am more worried about my FEC getting delayed and clashing with my holiday to cornwall on July 5th !!!!
I also have a very sore mouth, no ulcers or furryness , just generally sore, I am using Cordysol mouthwash and bonjela.
Otherwise just feeling wiped out a bit still due to period more than chemo I think xx Ruth xx
Better day today, took it easy . Nurse came and changed mydressing and flushed the portacath. Still constipated and a horrid taste. Weirdly I keep 'smelling' heat like an old dust filled fan heater has been turned on . So mints by the bed and lavender near the pillow , Sleeping pattern is up the spout too.
But first week is done and dusted .
Seems like we are all having similar side effects. I've slept loads today having felt exhausted but have also had horrid stomach pains and a furry mouth - despite sucking ice pops during 1st chemo! Movicol has been brilliant for constipation - has to be mixed with orange juice or ribena I find to make it palatable.Really hoping to find some energy tomorrow.
Ruth, I count myself lucky not to have period probs to add to everything so hope you and other ladies who are suffering get some relief soon.
Lucia- good luck for Wed - in my experience it was all very calm and pain free.
Jo - your lemon and rosemary chicken sounds delicious - and I have no appetite at the mo!
Linda - I can cry so easily now it's ridiculous. Luckily it uses blows over as quickly as it comes.Good luck with work tomorrow.I'm still signed off so hoping to stay under the duvet until these tummy pains go.
Jan, if you like cinnamon have you tried chai tea ? Can't cope with my usual strong coffee yet.
Sheryl - hope you had a bit of enjoyment at home today.
Night night girls, Gill X
Hi Gadget girl,
Thanks for explaining the time frame re the menopause, I have read a couple of books, but everyone seems to be different 🙂
I had my first chemo last Tuesday and it was all very calm and the nurses were lovely, so try not to worry to much. I am having 4 x FEC, then 12 x Taxol, followed by radiotherapy and 5 years of Tamoxifen. I had a WLE and SNB, 11 nodes were removed, 10 of which were affected, hence the chemo, I used the cold cap, and it is bearable after the first 10 minutes as your head just feels numb. I am resigned to losing some if not all my hair if the cold cap doesn't work and already bought an array of bandanas and scarves.
Good Luck with chemo pre assessment xx Ruth xx
Hi everyone, Im lucia, 48 and single mum of a 13 yr old lad called Ollie. I go for my pre-chemo assessment tomorrow and should be starting on weds.
Have had a WLE and total clearance 1 16mm grade 3 IDC with high grade DCIS and 18mm IDC grade 2, LVI neg (not sure what this meant) am ER8 PR8 and Her2neg. Have had lots of problems with my wound healing and had nurse in everyday packing it and just moved to every other day but its almost healed over at last.Have got loads of fluid or inflammation around the armpit and down the arm and my shoulder blade, they said its a seroma but told haemotoma previously, whatever it is its gettign on my nerves. Have got numbness down back of arm and cording under arm and down arm but keep massaging it. Getting pain in the breast but again just keep rubbing it, good job im not in public :). Is anyone gettign really bad memory problems, seems since my surgery although i was dx as being menopausal in January so not sure if it is that. Ive still got a mirena coil which they havent removed but will mention it tomorrow to them.
I was dready starting chemo but am in a much better place mentally now the wound is starting to heal at last and after ready soem of these posts. I feel so much better in myself and have just been through the recipes and made the immune boosting soup. Am goign to be having 6 xFEC/T followed by radiotherapy and hormone therapy. Not sure about the cold capIm as ready as i can be now and just want to get on.
Im so sorry to hear about those of you who have been having problems in your personal lives as well as ahving to deal with this. im trying to remember all your names but as soon as i look at them and then get back to hre ive forgotten them again, my apologies. Have many of you joined the fb page? Will be back tomorrow to let you know how i get on