@bridget1 … thank you for that, I am definitely using that card now (how mad was I thinking I’d almost pretend this wasn’t happening!!!) … I think we can use it for most of 2025 too x
@alig1961 … ugghhhh I feel for you. Feeling sick is so horrible and you can’t think about anything else. Hopefully your team will help change the meds as they really don’t want us to be too ill. Some peeps do recommend those anti sickness sweet things … not sure if it’s your thing but maybe worth a try.
But cry and be miserable… some days that’s just how it has to be. This is crap - no doubt about it - so just stay at home , take it easy and see it as ‘bad days’. Try to remember that the good days will come again… it won’t last forever.
@kcg0610 sooo glad your wedding is going ahead!!! And Corfu in September… absolute bliss. Going to Greece is on my ever expanding ‘stuff to do after this cancer malarkey’ list! Glad Pax isn’t too bad either … but yes, the hair thing is crap. I know I’d feel better about this if I didn’t lose my hair
@ljlj I too feel like I’m wishing this time away … some days I go to bed and I’m just relieved it’s another day over and closer to this being done. My team keep saying I need to be nicer to myself and enjoy the little things but it’s hard when I feel like I’m dragging a gigantic bag of worry around with me all the time… how do any of you ‘live in the moment’ and all that??
And thanks for the tongue reassurance… it is like an anaesthetic!!! Weird sensation… I’m hoping it doesn’t last as not being able to taste my favourite crisps is horrible (crisps get me through a lot of things!)
And blimey, it is hot … I’ve stayed indoors with a fan these last few days but I have to brave going out this weekend. I have another of my sons athletics all day competition on Sunday … I’m imagining myself in a v hot wig all day with everyone talking to me as sweat drips down my face!!! No mascara for me !!
Happy weekend everyone… even if it’s a miserable one we will all get through this … just keep on going team xxx
@bridget1 love this! Absolutely use this at any opportunity you feel it’s needed
@donna_51 hope the tongue/taste thing passes. I love my food and also my crisps too. Not fair for it to spoil that on top of everything else! Re getting through the weeks, I try and plan little trips out with friends/family on my good weeks (probably easier for me as I’m every 3 weeks). This usually involves coffee/cake/lunch etc
@alig1961 hope you managed to get a decent sleep (despite the heat) and the sick thing has improved. Have a cry, whatever is needed, on those bad days. I felt like this Thursday with sore spots round my scalp and generally out of sorts, feeling I looked and felt like a cancer patient, fed up with constantly picking hair off me, thought about forgetting the cold cap and just shaving it off. Yesterday I woke up feeling a bit better and a bit more positive. It was also hair wash day and the spots had also calmed down a bit.xx
Hope everyone manages to have a nice weekend. I’m off to a different garden centre this morning (not the one across the road) for more coffee/cake with a couple of friends
I got through the night with no extra medication. Yay A small victory thank you team June. Now let’s see what Saturday brings, at least it feels a bit cooler.
I dread shower time each day and seeing even more hair in the drain. I managed to ingest some yesterday and as it’s only grade 2 hair it’s like little splinters. Nasty ! I dread injection time too !
I do like my new premier inn mattress that I treated myself too just at the right time.
Have a good and restful weekend everyone and thank you all again for being there. Xxx
Yay @alig1961 … celebrate those small wins!!! I drank coffee this morning and it tasted normal so I’m celebrating that!!
@wjs … I think you’re right. I definitely have better days when I see friends and just suck up their positive energy. I’m a natural introvert and generally don’t try to ‘burden’ others with my issues but this has forced me to get out more and really rely on the power of people who really care about you. I’m going to plan some coffee and cake and garden centres next week !!!
In bed with a bit of a headache so won’t attempt to reply to all messages save to say I’ve read them, thinking of you all and love the cancer card!
Leaving the headache aside (and I have had vestibular migraines for the last few years -generally, but not always, controlled by drugs), I have had hardly any side effects from weekly paclitaxel and three weekly herceptin. But only just done 4th week. Some fatigue but not clear whether much worse than usual (have fibromyalgia and rheumatoid arthritis so an afternoon sleep is always part of my routine), runny nose and tickly throat (appears to have provoked some type of hay fever for the first time), a funny turn in an overly hot theatre and that’s really it. Am cold-capping and doing Daniel Field products - no shedding so far, but might still be early days (interested to hear from others doing same regime). Doing lots of “pampering” - skin, hair, teeth - which might fall by the wayside if more fatigue kicks in.
In the meantime have become heavily embroiled this week in a local planning issue (aggressive developer wanting to plonk an estate down in a small village on open countryside opposite our house - already turned down once in multiple grounds). Suspect dealing with msgs about this might be behind my headache - phone firmly being turned off now! Enjoy the weekend as much as you can everyone.
@donna_51 yes my tongue is the same - it did it after first and second treatment. Goes very pink and mouth is alive! Then it calms down again a week later - weird. I use the Colgate mouthwash with no alcohol does help a little. Good luck!
@alig1961 really sorry to hear you’ve been struggling with nausea- I can’t help but sending you hugs and hope you are starting to feel a bit better. That feeling is just horrid.
@lolac good luck with planning and hope the migraines go!
Losing hair has been the tough bit but have to say a week after the big shave I’ve gained in confidence. I’ve been on TEAMS calls at work with a cap on and showed them and then we just carried on like normal - took mum for supper wearing a wig that felt a bit wiggy but it was ok but hot and saw friends yesterday who just gave me more confidence. My son said own it - my friends said the same - just the final bit as the last bits of stubble start to go. Strange times.
This group is super supportive - keep going forward June Group - thank you for all the comments, support, encouragement, tears and reality! Hugs to all.
Not sure where I belong right now. I started neoadjuvant chemo at the beginning of April, but had a few weeks off in between “phases”.
Grade 3 Er+ve ductual tumour. I’ve done 12 weekly rounds of paclitaxel and finished end of June. I started four rounds of fortnightly AC (rather than EC) last week.
As I seemed to have done it the “wrong” way round ie paclitaxel first no one else seemed to be going through the same experience on the other forums. And here I am this month like I have never had chemo before and experiencing what most of you have just gone through - it’s all new to me.
Hope you don’t mind if I join? I felt bad reading your messages and not saying anything. More than happy to give my personal experiences of paclitaxel but everyone is different as I have learnt. For now I’m day 6 post AC and just go from feeling sick to bunged up (if you know what I mean).
For those going on to paclitaxel I found it OK.
On paclitaxel, I sorted out my diet and upped my exercise and all was going well. The weekly visits become part of the routine but everything is about cancer and getting ready for the clinic that week.
If you want some good news I kept about 98% of my hair through cold capping. I was also told by my cancer nurses that for those who did AC or EC first some noticed it growing back through the paclitaxel treatment. However we are all different and now no doubt my hair will tell me its had enough this time around. No one knows what they are going to experience until they start.
My watch warns me I’m averaging fewer steps and exercise than a month ago and I want to tell it where to go - in my head I am shouting “I have cancer what do you expect?” I never felt angry during phase 1 but now I’m throughly hacked off.
BTW I had a portocath fitted before I started, which has been useful. However it’s now blocked so to all those who never got one please don’t beat yourself up as it’s not all plain sailing when you have one. I have to have it surgically cleaned next week - key hole surgery but I’m not looking it up. Another thing to not think about.
As for weight I managed it like a hawk during phase 1 as you’re weighed every week. The novelty has worn off and now I just need to get to the end. I’m not hoovering down the cakes but with nausea I find I’ll eat anything that doesn’t make me want to…. And don’t get me on fluids. The thought of a glass of water sends me back into my cave, having spent the last few months glugging it down like a marathon runner. Even certain types of glasses or cups make my stomach churn.
My lumpectomy will be towards the end of September followed by radiotherapy.
Here’s to a better summer and lovely to meet you all
x
Welcome @jbb - sounds like you’ve had some tough patches - some days are better than others and it doesn’t make it any easier with a few more hurdles to go.
You’re doing great and moving forward albeit small steps. This group has been great and hope you get some support from it. Good luck with cleaning of the port - yet another hurdle.
Eating …. Sounds hard - I tried to be super healthy to begin with and now I just eat - probably too much and probably the wrong things. However I’m determined to keep my weight stable and realise my activity is down on what would have been the norm. I have realised I can’t do what I used to be able to do but I can do little things …… variety is good is what I’ve read - been kind to yourself is also hard when you know what you’re used to doing!
I hope your journey gets a little more tolerable - sending you hugs and hero going forward. Best wishes to you and thanks for sharing your journey x
Any one on here about to head for round 2? I’m having phesgo, docetaxil, carboplatin with cold cap. Having a portacath fitting in the morning then chemo from lunch time. Really nervous about it all. Also my hair has been really coming out this week. The picture is from this evening alone.
Welcome @jbb and good luck with the port clean next week!
@marge1 have you hit around the dreaded day 18? That was a shocker for me too around that time. Definitely had a few tears. I’m a week on from my second EC. Hair is still constantly coming out, although I’m not sure if it’s quite as bad. It must be thicker than I realised as I honestly don’t know how I still have any! Good luck tomorrow, sounds like you have a big day.
Re the eating, I’ve decided while I’m stuck working from home I need to sort my life out and going to introduce myself to ‘Get fit with Rik’ on YouTube Get some power walking done in my lunchtime if I feel up to it to counteract all my cake trips out!x
@wjs@marge1 my hair started to come out on day 18 after the first treatment and continued, even more heavily, after the second session - I’m on EC. I cold capped for both. I too am astonished I have any left!! I’m day 13 now and there has definitely been a slow down in the rate of shedding. I’m wondering what will happen after my treatment next Monday and if it will speed up again. I have got a baldish patch on the crown and thin areas on the sides, all of which can be covered with a headband
@wjs Yes, it was a turning point on day 18. Coming out in small handfuls if I put my hand through my hair which was alarming. I don’t have thick hair to begin with! Will stick with the cold cap and see how it goes in the next few weeks. Trying to practice elaborate scarf tying to keep me amused. Just feel like once I brave it, everyone will be looking at me. It’s bad enough wearing a mask to go into the local shops!!
Thanks for your lovely response. How have you managed the hair loss? Are you covering up yet?
Yes big day ahead and first day of the school hols. 5 children to organise Xx
@jbb welcome to our lovely group - you are welcome. Any group that can help you is a bonus no matter where you are in your treatment plan. We’re all on slightly different regimes but that doesn’t really matter as most have side effects and yukiness so we’re in it together!!!
@marge1 … the hair loss is horrible. I now have half bald and half hair head… I should shave it with a razor blade but I just put up with it and wear my trusty baseball cap and panama hat when I go out casually + my pink wig for fun. For some reason I can’t face ‘real’ looking hair so I admire those of you with your ‘wiggy wigs’ when you go out!!
I am also having a bit of a ‘fight’ with food. I normally strike a lovely balance between healthy eating and exercise yet enjoying good food and wine etc… but honestly now I can’t seem to settle on anything. Each day I seem to crave something new and then when I get it, it tastes odd or doesn’t feel right. The tongue feeling is a bit better but sometimes I feel like I can taste something else with it… argghhhhh… my son made cookies the other day and it was like tasting sand !!! AND I ate crisps today and I felt like I could taste the mud on the potato… I guess it’s another side affect … sigh …
Another question for you team - have any of you tapped into the free Macmillan counselling? My team suggested I get some help during treatment rather than just ‘waiting til the end’ to try to deal with the emotional side of this so I had an initial assessment with them today. Blimey… all it took was a few questions and I was a sobbing wreck… I think I’ve got it all together but clearly don’t !!! They’ve recommended 4 x free sessions which I’m obviously going to take but nice to know if anyone else has done this and found it helpful at all.
Anyway… hope all you peeps are doing as ok as you can, with or without hair !!! xxx
@marge1 I’ve not heard about the free counselling. Perhaps I’ll look into that. I’m in a state today about the hair. I can still cover the thin/baldish patches with a wide hair band but I’m not sure I can face having to wear it for the next 8 months or so, and if I have a wig then will it look wiggy or ‘look at me I’ve got cancer’? Sigh. I’m going to a wig shop on Wednesday so at least those questions will be answered. Ive got it all blown out of proportion today I’m going to eat a lemon muffin and some marshmallows to cheer myself up Nothing like eating a balanced diet Love to all
@donna_51 i could write a whole page on mouth issues and taste loss so completely empathise. First my sense of taste went completely on day 2 after first treatment. Then I developed the dreaded Mucositis and my mouth and throat were so painful that I could barely tolerate water in it. I was given gelclair and am still using it three times a day in the hope that this cycle won’t be as painful. The taste issues aren’t quite as bad and I discovered iced coffee with almond milk as things improved. I went through things that should have been sweet taking like they were full of sugar to nothing tasting sweet at all. I can’t taste chocolate anymore! Cold plain cooked veg was a winner and mashed potato. Sorry to hear about your hair trauma. I’m sitting here with the cold cap on for round 2. It’s much colder this time and they have gone for a small size. I think it wasn’t tight enough last time. Much more painful today.
@donna_51 I’ve been offered an ‘holistic assessment’ which is to assess how your coping and any additional support you might need. I should have had it last week but had to move it due to my treatment being delayed a week. Got it in my ‘good week’ after round 3 now. It’s back at the Breast Unit with the nurses I think. I guess they may refer me to the Macmillan unit at the hospital if they think I need it.
we will all get through this … just keep on going team xxx 
Re getting through the weeks, I try and plan little trips out with friends/family on my good weeks (probably easier for me as I’m every 3 weeks). This usually involves coffee/cake/lunch etc 
A small victory 
thank you team June. Now let’s see what Saturday brings, at least it feels a bit cooler.
Xx
I’m going to eat a lemon muffin and some marshmallows to cheer myself up 
Nothing like eating a balanced diet 