Hi All, how is everyone? I can’t believe how tired I have been in the last 24hrs! I keep reading one line of my book and falling asleep then 5 mins later i’m awake again doing the same thing, literally just fell asleep drinking a cup of tea! Massively swollen boob too ? still nausea seems to have passed ?
Good morning
I was very tired the first few days now I manage to stay awake most of the day
Even managed a cinema trip with my girls yesterday ?
My hair is slowly starting to shred so I will have to make that decision soon to just shave it off which I’m prepared for as in have my wig and hats ready
But not sure I’m mentally prepared for it
Hope your all feeling as well as can be expected xx
Good to hear you are feeling less tired, how old are your girls? The hair is definitely going to be a traumatic point even if we know it’s coming, we just have to learn to make good friends with our wigs, and keep going, it must be very hard to make the decision that today is the day the hair needs to go, sending you strength for that ?
Hi sals
I have three girls one 19 and spread her wings and started uni in September miss her so much
The other two are nearly 14 and 10
They have coped brilliantly through this yes they had tears but I told them how hard me and the doctors will fight so on
They had bit of a shock as chemo literally took me off my feet for few days
They have never ever seen me like that
I felt so sick I couldn’t even speak to them more than a word or too
Next cycle they will be more prepared
I’m not quite ready to shave my hair will see how it goes over next few days
My other lady hair is falling out quicker which I find bizarre
But hey no need for shaving and trimming anywhere else on my body now xx
Hi All you lovely ladies,
Has anyone else been disappointed by the lack of support from people you thought would be there for you?
If it wasn’t for husband, daughter and friend of 45 years I would feel so isolated. Lets just say there will be a lot
fewer people on my christmas card list this year.
Hi Harkes
I’m sure we have all felt/feeling the same
I have had some amazing people well about five of them the rest well
Including my own sister
I gave up messaging her over a month ago as she would never even ask how I am
Needless to say I have heard nothing at all from her
Yes I was upset and angry but this is how she is a very selfish person who the rest of my family have up on many moons ago
Like you my list will be shorter this year
But we need true genuine people to support us and even that’s not as many as we had hoped for it it’s all we need ?
Hi Lisa, the hangover feeling has gone thankfully. Will wait with anticipation for the ‘foo’ feeling at tomorrows sesh ? I’ve been quite fortunate I think as I’ve had no sickness or nausea, haven’t lost my appetite and have had little trouble sleeping, so the drug combo seems to be working for me at the moment. My side effects have been the fuzzy head and tiredness for the first few days and achy legs after the injections. I even managed a few hours out yesterday and had a couple of halves of lager but it did feel like I’d had 8 pints ? Had a trip out to the cinema today too. My 2nd chemo tomorrow morning and may eat my words this coming week so fingers crossed. I will make sure I don’t eat any grapes during my treatmeant ? xx
Hi Harkes, I’ve had the odd one of two where they’ve gone quiet on me but I’m very fortunate to have such great family and friends. The ones that don’t make the effort aren’t worth your time lovey, you’ve bigger fish to fry and make the most of the ones that are there for you xx
Hope everyone is doing okay, we’ve got this **bleep** ? ? xx
Hey Lisa, sorry forgot to ask how you’re getting on after the Paclitaxel only on Friday? Are you having less side effects than having it with the Carboplatin or is it just the same? Hope you’re not feeling too bad xx
Ladies, me, Lisa and Lilypad are on a trial where we have our treatment every week for 12 weeks then 3 cycles every 3 weeks of EC after. It’s Carboplatin and Paclitaxel for the first week then Paclitaxel on day 8 and 15 then the cycle starts again up to week 12. Alot of different side effects for different variations of chemo by the sounds of things. Take care everyone xx
Hi pigeon,
I’ve had a bit of an itchy scalp - was seriously hoping I hadn’t picked up nits from somewhere!!! How many days are you post chemo? I’m 7 and I think they say 10-14 for the fair loss haven’t lost any body hair yet either - that I don’t mind i’ve not waxed my legs in 2 months, it seemed like a waste of money!!!
I’m really lucky I have a great mum (lost my dad last year so she is happy to have me sround for company I think) and amazing girl friends around me, husband is also very supportive but doesn’t find it as easy to joke about it which is what I enjoy with the girls - many boob jokes! Not sure about my 4 boys they can’t seem to get to grips with the fact that business is not quite as usual and it would be nice if they did a little more for themselves than usual - but they are teenage boys/men so I guess that could be asking the impossible!! I think they feel it more than they let on so as long as they are coping it’s ok for me. I agree though this nasty ****** changes your perspective there’s no time to waste on people or things that don’t nourish you, stick with the goid guys and let the rest fall by the wayside. Take care
Well ladies, I’ve had a pretty good month, apart from the hiccup the first few days after treatment 1, although that might have been my fault trying to do too much too soon.
I’ve been feeling pretty good this past couple of weeks and having my bloods done today, I’m keeping my fingers crossed that I’m ok for round 2 on Wednesday. I’m hopeing I get through the next one without any problems, just need to learn to rest a bit more. Had the bloods done at 3pm and was told they would phone me if the count was not high enough, so far, no phone call.
My only hitch has been the dressings used for the picc line, my skin does not like the adhesive on the dressings and I’ve had a few trips back to the hospital just to try and sort it, I had the same problem with the dressings on the lymph node scar, so I’m not surprised. Today the nurse put a great big brown plaster over the picc line with just a small amount of adhesive around the edges. I can’t see if the area around the picc line becomes red or anything, but fingers crossed it behaves.
If it was not for the picc line, cleaning my teeth three or four times a day and wearing my lovely scarf hats, I would not believe there was much wrong with me. The only thing I’ve noticed is a growing paranoia about people coughing and sneezing when I’m out, I feel like running a mile from them and my hubby told me today, I have a look of terror or fear on my face. But I’m still going into shops, at quiet times and trying to live a normal life, even went to Knole Park and Scotney Castle last week, lovely doing the walks around the estates.
Is it just me, or does anyone else have this constant anxiety about people with coughs and colds.
Hi
Well today is day 15 and well my hair as decided it won’t just be the odd strand anymore
And either tomorrow or the next day I may have to be brave and share it
My head also feels funny tingly , itchy hot all on and off
I can’t run my fingers through my hair now as they end up full
And I have to agree with not wanting to be anywhere near anyone that coughs or sneezes
The first time I went out
I messaged a friend and said if anyone coughs or sneezes near me I will Kung foo there arse away from me haha
I have to also add my erm how to put this lady garden hair started to really come out first ??
No need to shave my legs either anymore xx
Hi Lisa. Yeah, ready for it ? I’m thinking the same about the FEC ? At least we’ve only got 3 cycles of it and not 6 like these lovely ladies. We’ll probably be grateful for the 3 week break by then I would think.
Take care everyone xx
I have been out in my head scarf trying to prepare my self but I think today or tomorrow will be the day my hair is everywhere and I’m sick of hoovering up numerous times a day
I would like to try and say EC isn’t to bad but it hasn’t been to kind to me , how very selfish of it ?
I have another three to go then move onto four tax
I’m telling myself my next cycle makes me half way through the EC it seems to help xx
Hello ladies,
New to this but was diagnosed July. In August I had 2 lots of surgery, grade 2 tumour and lymph node involvement, ER+, HER-. Now I am day 13 after the first round of FEC chemo. All OK, survived the portacath under local (yuk! what a nightmare!), and then the actual chemo. So far I have been tired and a bit achey, but I am dreading round 2 next week in case it is worse. I have 3 rounds of FEC and then 3 rounds of T , so one down , 5 to go. It is strange to see the variation in treatments, but I assume the oncologists know what they are doing.
My hair is still on my head, but elsewhere is experiencing autumn.Very odd. Still it saves shaving. I wondered if it was just me - I have a wig and hats and scarves at the ready, and am almost frightened to brush my hair.
It is the waiting I can’t stand, and feeling like my life is on hold whilst also trying to make the most of every day as far as I can.
Also trying to carry on whilst I avoid anyone with any kind of bug! I appreciate what some of you have said about horror if anyone nearby sneezes! I am thinking of going out with a scarf over my face like a cowboy in a dust storm!
Keep going everyone, we can do this. My favourite quote about this so far, I don’t know where it came from :
“A woman is like a tea bag. You never know how strong she is until you put her in hot water.”
The water is quite warm right now. X
Hi Anitmth
And welcome
I will also get my second cycle of EC next week , I’m having four of each today I have gone out in my head scarf
As I think tonight will be the night to say goodbye to my hair
I’m sick of cleaning it all up from around the house xx
So ladies
I did it I braved the shave not completely a number three
Yes there was tears but I couldn’t bear how much was coming out any longer xx
Hi Kateaday,
Whoop whoop, well done you did it! How do you feel?
?
Honestly at the time devastated which is odd I’m not a girly girl with fancy hair
Only hour after I feel it’s a step forward
Went for a shower and stood waiting for conditioner to soak in and then realised there wasn’t much left to absorb it
Husband said he could see once started where it has started to thin a lot and my scalp looked red
I said that’s because it’s sore xx
Hi Anitmth and pigeon,
I think we are all on very similar regimes, I have 3 FEC then 3 T, my tumour was grade 3 but no lymph nodes involved ER+ but also HER2+ so I have the herceptin added on from cycle 4 and if I remember its 18 of those injections every 3 weeks but I don’t think there are any real side effects? Fingers crossed i’m 1 week today since my first cycle and had surgery beginning of October. I’m due to go back to work next week, how are those of you that are working coping?
? I guess it’s going to take a little time to get used to it and to be honest I was only thinking about the look not so much that it might actually be sensitive - that sucks. I think I could handle my hair if I still had eyebrows and eyelashes it’s the thought of a face with nothing that defines it that worries me - bring out the makeup bag! By the way has anyone been to a look good feel better session yet?