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August 2021 Chemo Starters

mbElizabeth
Member

Re: August 2021 Chemo Starters

Hi Mel

Im so sorry about your hair it’s happened to me too .I’m same I have my 3rdEC this Friday and I also lost my hair 3 days after my second EC I am lucky I have my husband who supports me and we both cried a lot as he got the clippers to my shoulder length streaked hair it was like my last identity as a woman was taken and the realisation of I have cancer his me . I can’t imagine being by myself through this without the support of family , friends and my beautiful neighbours although I sometimes need to just sit and reflect on my own I know they only want to help and love me so please try not to push people away because we dooo need them and their love and support whatever it may be.

I had prepared for that moment and had pre bought a wig online from Wigs Australia who are really lovely and helpful  

you can chat online to them or ring them 

also bought some turbin caps from eBay 

I have joined Feel Good Look Better fglb.org.au they are recommended by the Cancer Council and have free workshops on skincare and makeup also wigs and scarves etc you can do them on line through zoom or attend locally in person they will also send you a care package gift I’m just waiting for mine it’s a bit exciting apparently they are great

Sending you lots of hugs please feel better we are all here to talk to if you need and try to except love and help from people who do care about you as it does help. We will be ok and come out stronger on the other end with beautiful new hair 💕😊

bananasatsuma
Member

Re: August 2021 Chemo Starters

@Mel1978 Big huge hugs! It’s not at all stupid to feel bad about losing your hair. I feel exactly the same way. It’s such a big part of your appearance and for me part of the difficulty is not wanting a signifier that I’m “ill”. We are told that being concerned about our appearance is shallow and that that means we can’t worry about it but that’s a load of rubbish, especially now when we need to hang on to what makes us feel good. 

I don’t have a lot of good advice, because I’m still processing but you could try a Look Good Feel better workshop. I’ve also bought lots of vintage silk scarves that I’m trying out in different styles, as well as hats and headbands. I’m also making more of an effort with make up.

My hair hasn’t completely gone - the shedding seems to have plateaued and left me with about 40% which might happen to you too. It helps me to feel that I’m prepared if it does all go. You could also join the Paxman Scalp Cooling group on Facebook. Lots of people on there recommend keeping going with the cap to promote faster and healthier regrowth. 

Try not to push people away - I tend to do that too when I’m struggling, but I always feel better when I open up a bit and spend time with people. Feel free to send me a message - we’re going through the same thing xxx

Mel1978
Member

Re: August 2021 Chemo Starters

Morning ladies.

Iv had my 2nd EC on Wednesday and its been a little harder this time.  But I think because the cold cap doesn't seem to have worked for me and my hair is all coming out - I have a bald scalp now.  This for my is the hardest thing.  I dont feel like myself.  Im embarrassed and darent see anyone.  I know it probably sounds stupid but its how I feel.

I want to be strong but im struggling with it alot.

Im 43 and live on my own so im just pushing people away.

Any advice would be massively appreciated xxx

amy46
Member

Re: August 2021 Chemo Starters

@mbElizabeth 

Im doing the opposite to you. Paclitaxol first then EC - don’t really understand why as it seems quite unusual this way round. I think you will find the Paclitaxol very manageable, I have so far. Im hoping that even if the EC is worse I will feel closer to the end and just get my head down and get through it. Who knows maybe I will find that ok too 😊

amy46
Member

Re: August 2021 Chemo Starters

@SlightlyBewildered I use a company called Diablo. They seem very good, I’m on my third bottle. I use the oil that you put under your tongue. It does have quite a strong taste but I got used to it quickly. May not be good if you feel nausea with string smells. There are calculators online to help you work out your starting dose then work up. I take 20mg twice a day now.

Just having a stress now as my daughter tested positive on her LFT this morning. Half her year have it so not surprising. She’s vaccinated and just had a mild headache yesterday. Hoping I don’t get it and have to miss my chemo or I get really poorly. My white count was ok last week so 🤞🤞xx

mbElizabeth
Member

Re: August 2021 Chemo Starters

Hi bananasatsuma and 14

I have had  2 out of 4 fortnightly chemo sessions and the to follow weekly about 10 more . The weekend after the 2nd lot I lost my hair . Don’t worry we’re all in this together and with all of the great support here I’m sure we’ll get to the other side of it just fine 

keep smiling 😊

 

 

bananasatsuma
Member

Re: August 2021 Chemo Starters

Hi everyone, 

I’m so envious of those of you who are nearly done. I’ve got 13 more to go! It feels good to be almost done with the first stage, which is EC. I understand the paclitaxel is not so harsh and that the time goes quickly when you’re on weekly cycles. 

Anyone else still got months to go? 

I’m crossing my fingers that I’m going to be one of those people who sees hair regrowth during paclitaxel and persevering with the cold cap. 

Sarahb2
Member

Re: August 2021 Chemo Starters

That headscarf video was brilliant, thanks!  I'm quite a way behind most of you, as started my TCHP chemo on August Bank holiday Monday - lots of nausea, vomiting and diarrhoea day 5-9, but have had my meds adjusted in time for round 2 this Monday coming.  I have lots of fine shoulder length hair and am cold capping, but shedding madly over the last couple of days, so starting to think about scarves and hairbands.  Have a great weekend all, Sarah xx

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Morning All

I have one more to go. My last is on 8th Oct 👏🏻👏🏻

Went well yesterday. There are a few of us that are there together every week. The nurses sit us all together so we can chat. It’s actually a very positive experience which is amazing really considering why we’re there and what we’re having done.

Those of you that are capping … I have worn a headband in the past but it kept slipping down - annoying! So yesterday I stole an idea from the American ladies. I used a panty liner 😂😂😂 Oh my goodness! Total game changer! Stayed put, was super comfy and caused a laugh! I have attached a photo of me sporting a panty liner stuck to my forehead! 

@amy46 I’m so glad you enjoyed the workshop. You will love your goody bag 💗 The nail one was great too Brilliant that you’re doing well after 4th session. I reduced my steroids too after the last one and will do the same this time. It definitely helped the sleep issue. What CBD oil do you use. Friends have suggested it but I’m not sure where to start xx

I hope everyone has a good weekend. Sending love to all those with treatments next week. Sarah xx 

341448E4-505B-46ED-8A13-6ACFA26041B6.jpeg

 

amy46
Member

Re: August 2021 Chemo Starters

@SlightlyBewildered I thought the workshop was great and I’m doing the nails one next week 😊 they said three weeks for the goody bag and I can’t wait to see what’s in it!

I had by fourth chemo yesterday with the Carboplatin added in. So far so good, don’t feel much different to last week and I was able to run this morning. I have reduced the dexamethasone this time as my oncologist says that was a good thing to do if I didn’t feel sick which I don’t. I have been having acupuncture and taking cbd oil  which might be helping who knows?! 

I am also keeping pretty active although I do make myself have a little rest or a snooze in the afternoon. I guess I’ll know about it if and when I overdo it! Different for everyone I suppose. Have a good weekend.

xx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @SlightlyBewildered and all

I really enjoyed it..it was a nice way to spend 2 hours.

Well done on completing your chemo..I have 7 cycles…so far nearly completed 2.

Yes being active when you can is god isn’t it. My mum is getting worried as I am working/cleaning etc still & she said I should be resting but I don’t feel tired. My view is rest when I feel I need to & the days I have energy use it or is this wrong?

 What do others do?

x

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi @amy46 and everyone 

What did you think of the workshop? My goody bag arrived yesterday - it’s amazing. So much lovely stuff 💗 Was gonna post a picture but then thought it would spoil a nice surprise!

I have my 3rd chemo of 4 tomorrow. Can’t quite believe I’m here already. It really seems to be going super fast which is great 👏🏻 I’ve cleaned the house today as I can’t bear it being grotty when I don’t feel up to doing anything about it. 

If anyone is considering it - the nail workshop is good, my nails have started to dry out and flake. Not sure if it’s the chemo or because I’m keeping them painted all the time and it’s drying them out. Could be both I guess. Anyway … I got some really useful tips to help keep them in better shape

Sending love to all. Sarah xx  

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

I had my 5th chemo yesterday and so far my white cells have been okay so hopefully yours will be too.

I am enrolled in to the look good feel better thing tomorrow but have asked to turn my camera off as I have only just lost my hair & not comfortable with it.

As for shielding I see friends for walks or coffee outside but that’s it, too paranoid about germs!

x

 

amy46
Member

Re: August 2021 Chemo Starters

Oh @bananasatsuma @that must be impossibly hard to have to distance from

your little boy. I really feel for you. Could you get hold of some FFP3 masks? You could put one on for cuddles? (maybe decorate it first if you think he might be scared by it) xx

bananasatsuma
Member

Re: August 2021 Chemo Starters

Hi @amy46 and everyone,

I hadn’t really been paying attention to bloods but my third cycle was delayed by a week due to a bad cold and so I had a look at the white blood count and it was quite a bit lower than at the blood test taken before my first cycle - almost half. That and seeing how wiped out I was by a normal cold has made me a bit paranoid about infection.  I’m working from home, only seeing people outdoors and generally being hugely cautious. I don’t want any more delays or to put myself at risk if I don’t need to. 

The thing is, I’ve got a two year old who’s in nursery, so germs are flying round everywhere. It looks like he’s getting another cold and I’m having to avoid hugging him, not doing bedtime or bathtime, washing my hands like a maniac and it’s very hard not to be able to do normal things like hug my little boy. 

On a more positive note, this cycle has been better as I’ve got something to help me sleep and my hair seems to have stopped falling out. I do have an elaborate combover worthy of Donald Trump, but at least I look vaguely normal. 

amy46
Member

Re: August 2021 Chemo Starters

Hi everyone,

I thought the look good feel better thing was great, I picked up some useful tips and it was really nice to spend some time with people going through the same thing as me. I don’t really see any other patients when I go for my chemo so it made me feel quite emotional at the start to see so many brave ladies sat there. 

Some of them seemed to be being extremely cautious about shielding and I just wondered what you think about it or have been told? I have kids at school which is obviously a risk but I am also seeing friends most days for a walk or a coffee outside. If family come they take covid tests first but I can’t bear the thought of completely cutting myself off for five months. Have any of you had a low white count yet on your bloods? I’ve no idea when to expect this? I have the filgrastim injections for three days after each weekly chemo and the last two weeks my white count was ok. 
Hope you have all had a good day xx

MargoB
Member

Re: August 2021 Chemo Starters

Hi 

Had my second EC and the nurse said to continue using the cold cap for protection of the follicles and regrowth purposes  - I have lost about 50% of my hair after 1st cycle so was in two minds to continue so glad to get the advise off the nurse and will continue as suggested 

Hope this helps anyone having second thoughts  

 

Xxxx

mbElizabeth
Member

Re: August 2021 Chemo Starters

Hi Tizzy

its fglb.org.au and look on the menu for workshops Hope you enjoy it I did

hopefully you can snuggle those grandies soon 💕🥰

Tizzy
Member

Re: August 2021 Chemo Starters

Hi Ladies

It's good to read how you are all getting on. As has been said, it's nice to know we are not alone.

Can someone give me a link for the look good feel better site? I can't seem to find it and it's something I would like to try. 

Like you @mbElizabeth I am lucky enough to have family close at hand, but I am really struggling with not getting the cuddles I really want. My oncology nurse implied I have to be really careful of avoid picking up any infections, not just covid, and it has made me really wary of seeing my family, even though it's the one thing I want to do. I know it's not forever, but having waited so long during lockdown to spend time with them, I was really looking forward to spending summer time with them, and then because of my diagnosis in June, everything went to pot. I really feel I'm missing out on some 'special time' especially with the younger grandchildren.

Anyway, every day is a step in the right direction, so keep up the fight ladies - we've got this 

Hugs

Tizzy x

mbElizabeth
Member

Re: August 2021 Chemo Starters

Hi

hope you enjoyed the look good feel better session today I know I got a few tips from it

I too did the shave yesterday after my hair just fell into my hands in the shower and it really brought all my emotions to the surface from this last few months of turmoil

We must be strong and positive and take this day by day 

my children are older and I have grandchildren who I love with all my heart and they are really upset about my cancer so I strive to reassure them all the time that I will be ok all the time with a smile and a cuddle💕

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Morning @amy46 

I hope you enjoy the Look Good workshop this morning. I thought it was fab. I’m doing the nail one tomorrow morning. I’ll let you know what it’s like 💗

I know EXACTLY what your mean re the fear of reoccurrence hitting hard at times. I was washing up after a Sunday roast yesterday and got really emotional and teary. It was totally out of the blue as normally I do well not overthinking it. A friend of mine who went through this last year has just finished a course of counselling through Macmillan. Mainly for this very same reason. She said it was excellent and she is a counsellor herself! I am going to have some too I think. Once I complete my treatment. Def don’t shut your worries away and try to deal with them on your own. 

We are so lucky with all the treatments that are available to us. We will all be just fine and be annoying our family and friends for many years to come 😂💗 

 

I hope the ‘double whammy’ doesn’t floor you 🙏🏻 Sending love and hugs. Sarah xxx 

amy46
Member

Re: August 2021 Chemo Starters

I think you ladies are all very brave to do the cold cap. My oncologist didn’t think it would be successful for me but I am

such a wuss with being cold I’d already decided not to try it! My hair started coming out on Friday exactly 2 weeks after first treatment. Saturday there was more and so much came out in the shower I just decided to go for the shave. It’s not awful but I definitely feel I look more cancery which I hate. At least I know it’s working as I’ve been very lucky with other side effects so far. I get the double whammy this week with the Carboplatin added to the Paclitaxol though so I might not feel so good next week. I had a massive wobble last night with the feelings coming back from around diagnosis time - sudden fear that I may not be here to see my children grow up. Most of the time I seem to be able to squash it down but sometimes it bubbles up and feels so overwhelmingly scary and so bloody unfair when I have tried so hard to be fit and healthy. 
I know I can deal with the treatment it’s what comes after a d the constant fear of it recurring that really gets to me. 
Anyway, sorry. That’s not a very cheerful way to start the day it’s just I’ve been awake for ages fretting. 
On a more positive note, I’m doing the look good feel better today. I wonder if any of you are doing it too? Xx

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi @Sephie 

Def keep going with cold cap if you can. I’m going to. Even with considerable hair loss it will protect your follicles and also is meant to support faster regrowth. Good luck with everything.  Sarah xxx

Sephie
Member

Re: August 2021 Chemo Starters

Hi All

it’s great to be able to hear others’ experiences.  I have had two cycles of EC, both with cold cap.  My hair started to come out on day 20 but that’s not yet noticeable looking at my head.  I have headwear and a wig on order in case I lose a lot, but will probably keep on with the cold cap anyway.

After my first round of EC I suffered horrendous vomiting and nausea which basically incapacitated me for the first 4 days, after that I was still nauseous for another week but it was more manageable.  My team responded to my tale of woe by providing stronger anti-sickness meds for round 2, and that has made a big difference.  No vomiting at all so far, and definitely reduced nausea. So certainly worth pressing for more meds if you’re suffering.

I found drinking lots of coconut water helpful for constipation (it also slipped down easily when I was feeling sick). Luckily it was on special offer in my supermarket! Eating liquorice seemed to help too when I felt up to it.

Thanks to everyone for posting, and best wishes to you all xx

Mel1978
Member

Re: August 2021 Chemo Starters

Morning 😊

I'm on day 18 and my hair has started to come out 🤦‍♀️

This has been what I've been dreading most but iv pulled on my big girl pants and trying to be brave.

I used the cold cap too and am planning on continuing to do so even if it all drops out.  

Iv got a wig upstairs ready just incase.

I just want to say that I am so grateful to u all for posting in here - it really does make me feel like im not alone through this.

Let's keep going girls ❤ xx

bananasatsuma
Member

Re: August 2021 Chemo Starters

Hi @MargoB 

I’m using the cold cap. I’ve had two cycles of EC so far and will have my third on Friday. My hair started shedding on day 19 and it’s kept going although it seems to have slowed down a bit. It’s very thin on top so I have to do a kind of combover to hide the thin spots.

I still have a lot of hair, but it was very thick to begin with. I’m in two minds about whether or not to continue with the cold cap. I have heard that it can support faster and healthier regrowth even if you lose a lot, that’s the main pro for me.

For now, I’m learning to tie headscarves and will start layering the make up on with a trowel! 

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi @MargoB 

I’m using the cold cap. I’ve had two rounds of TC so far. I started to shed on Day 20. I shed a fair amount for about 5/6 days and then it slowed right down. 

Apparently it normally starts from around week 2/3 of first treatment. 

I’m brushing mine through twice a day and I keep it tied back. I do lose some every time I brush but not as much as in those 5/6 days. Is your scalp tingly and sore? This is a sign that shedding will start or continue apparently. If your scalp feels like it’s calming down the shedding may lessen over coming days. Mine was mostly in my crown area. 

I am on the FB group Paxman Scalp Cooling Group. If you’re on Facebook I highly recommend it. It’s the cap we use here in the UK. Loads of advice and tips from women taking a variety of diff chemo drugs. Paxman say losing some hair is unavoidable and totally normal whilst using the cap. Even if we lose considerable amounts they say to persevere as it will support faster regrowth after treatment ends. 

I hope your next treatment goes ok on Monday. Another one in the bag and a huge step closer to getting it over with!

 

Love Sarah xxx 

MargoB
Member

Re: August 2021 Chemo Starters

Hi everyone 

 

It's so good to be able to get advice from this group - I had the cold cap but my hair has just started shedding today day 16 and feels like half of it came out in the shower this morning.

I haven't booked the wig appointment yet but probably should get on with it sooner rather than later. 

I've booked onto look good feel better workshop which I'm looking forward to and wouldn't have known about if it wasn't for this group. 

Got my next EC on monday - has anyone else had the cold cap but still lost hair ? 

Thanks 

Margo 

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi @purpleworld 

So glad to hear you are doing a little better this round 😊 Constipation is not ideal though. I had it quite badly first time round. Not so bad this time. I did take Senicot though. They do two strengths. I took the lower dose. One every night the whole way through. And this time for the first two weeks. I ate raspberries and figs with green yogurt and honey. Plus I  drank an expresso each morning! Not sure if that all helped though. 

Myself and @HighlandGirl have done the Look Good workshop. And @amy46 @is booked in! I started with bare face. But they go through cleansers/toners so you can always clean your face during that bit. It was good, hope you enjoy it 😊

I hope you have a successful wig appointment too 🤞🏻

My school all started back this week, I feel totally out the loop with it all. Luckily I have a super TA and she messages and calls me with updates and school gossip 😂

 

Sending love. Sarah. xxx 

purpleworld
Member

Re: August 2021 Chemo Starters

It’s lovely to hear how everyone is doing. I’ve certainly felt better during my second cycle (apart from being a little constipated - anyone got any tips - I’m reluctant to take meds as I did that last time and went the other way making myself unwell with dehydration) - my oncologist has reduced my dose slightly as I was given quite a high lot the first time around so think that’s made a difference.


Haven’t been able to find a wig through the NHS that I like so have found a local shop that supplies them so have an appointment for next week.

Im still struggling with how I look without hair and feel it’s so obvious that I’m now the Cancer patient.

ive book myself onto the Look Good Feel Better workshop this Friday for makeup tips so that’s something to look forward to. Has anyone done it? Is it best to stay makeup free for the session?

Take care everyone 

xx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

Mine started to fall out on the day of my third Paclitaxol which I think is quite common.

7 days later and still have lots of hair but so does my carpet! 😂

x

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Oooh Fab! And like @HighlandGirl said, you get a super goody bag too. Loads of lovely products to pamper yourself with. Not had mine yet but friends have sent me photos of theirs and they really are great. Such a lovely thing to be offered xx 

amy46
Member

Re: August 2021 Chemo Starters

@HighlandGirl Good tip about the scalp ph I never would have thought of that thank you! 

I’m going to hang fire a bit before I shave my hair as none has come out yet. Third Paclitaxol this Thursday so maybe after that x

 

amy46
Member

Re: August 2021 Chemo Starters

Hi @SlightlyBewildered 

I’m booked on the course next Monday, really looking forward to it. Glad you e joyed it and found it helpful 😊

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

@justine1970 

It sure is! This workshop was a definite mood lifter for sure. It was about 2.5hrs! We ran over slightly as people had lots of good questions and were sharing product advice and good tips! No one wants to be in this club but things like this make it a little more bearable xxx 

justine1970
Member

Re: August 2021 Chemo Starters

@SlightlyBewildered 

That’s good to know. This is all such a learning curve isn’t it!

x

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi @HighlandGirl 

I did the Look Good Feel Better make-up workshop on Friday. I thought it was brilliant. Lovely lady running it and 9 other really lovely ladies. We had a laugh and I picked up some really good tips. I have signed up for the nail one on 14th September. So lucky that things like this are available xx

justine1970
Member

Re: August 2021 Chemo Starters

@bananasatsuma 

Glad you are feeling better, that’s a relief.

 That’s useful to know too re the medication for times when you are in need.

x

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

yes in totally get that feeling too..my hair was super long and thick.. has it cut to my shoulders in prep and now after 6 days of falling out it’s really thin. Like you my wig is really lovely but it’s a bob type length as now used to shorter hair.

As much as possible I would like to keep wearing make up and keep my identity, I don’t want to look like I have cancer.

Today I am going to self tan, I hope we can! 

x

justine1970
Member

Re: August 2021 Chemo Starters

@HighlandGirl 

Thank you for the tip on coconut oil..I will buy some…I have tried to find a scalp look good feel good but they are on the day & time I have my chemo so unable to attend on line.

x

HighlandGirl
Member

Re: August 2021 Chemo Starters

@amy46 I'm sure everyone's hair loss is different. However my experience is this. I shaved my head 2 weeks ago, when it started seriously falling out. Even with the shave I still had lots of tiny little hairs over most of my head. Since then the tiny hairs have been shedding and I'm now much bolder than I was 2 weeks ago. Nothing appears to have grown for me. I haven't lost my eyebrows or lashes yet which I'm very grateful for, but I am expecting them to go when I start Decetaxel in October. 

@justine1970 I have found my wig to be quite hot so good idea to wait for the hot weather to finish before doing the shave. I've actually enjoyed wearing scarves and hats though so it's not been a big issue for me. 

The big thing I learnt this week is do no put shower gel or moisturiser on your scalp as the PH of your scalp is different to the rest of your body. I've now started using coconut oil and massaging it in daily.

Also, ladies, look up 'Look Good, Feel Better' and do their online workshops. This week I've done the makeup one and the nail care one. Both were great and they send you a goody bag afterwards! I'm still waiting to do the scalp care one at the end of September. 

amy46
Member

Re: August 2021 Chemo Starters

hi @justine1970 

I totally understand what you mean. I had a good sob about my hair last night. I’ve always had really thick long wavy hair and I’m so sad about losing it. It also feels like I will finally have to accept that I really do have cancer once once my hair is gone. It’s very symbolic. And such a visual clue to others. I’m trying to be brave about it but it’s quite hard. None of mine has come out yet so I don’t know what to do about timings. I do have a beautiful wig that’s actually very much like my old hair. Hopefully it’ll be comfortable 🤞🤞

good idea I think to wait if it’s going to be hot this week x

bananasatsuma
Member

Re: August 2021 Chemo Starters

I’m feeling a lot better, thanks @justine1970 

I was prescribed promethazine hydrochloride which I understand is one of the ingredients in Night Nurse. It definitely works and I don’t seem to feel too drowsy the next day. 

justine1970
Member

Re: August 2021 Chemo Starters

Hi @bananasatsuma 

I hope you are starting to feel better and can have your treatment soon.

My doctor has given me zopiclone for sleeping but they are super strong! What have you been given?

x

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

I am holding out now until Wednesday as the weather looks hot next week so I don’t want to wear a wig in the heat! It started falling out on Tuesday so this is day 5..its everywhere though and it’s becoming annoying but it’s my last thing of me if that makes sense. 

good luck with yours too..I have a couple of wigs and a topless wig (just the sides) that I will wear with hats.

x

 

 

 

 

 

 

bananasatsuma
Member

Re: August 2021 Chemo Starters

Hi @SlightlyBewildered 

thanks for your reply. It’s a bit frustrating to have a delay as apart from the cold I felt like I was handling the side effects well, but having had a big sleep I feel so much better that I can see it would have been bad for me to go ahead. It’s a marathon, not a sprint! 

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi @bananasatsuma 

I’m so sorry you’re feeling so rubbish. Last this you need is a cold to fight off. I am super pleased to hear that you managed a mammoth sleep though. That’s got to go some way towards helping you fight this cold off. Bet you could’ve hugged the GP! Sarah xxxx

amy46
Member

Re: August 2021 Chemo Starters

@justine1970 Just wanted to wish you luck with your hair shave. I think I’m going to do it next week even though no sign of it coming out at all yet. Does anyone know - once you’ve shaved it, is that it or do bits grow back even on chemo? X

bananasatsuma
Member

Re: August 2021 Chemo Starters

My third cycle of EC was delayed today because I’ve been battling a cold for three weeks now and it’s not getting better.  I’ve got antibiotics and a week off to sleep, eat all the vitamins and relax. 

I’m disappointed about the delay, but wasn’t up for feeling any worse, so it was the right decision. 

I also mentioned the sleep problems to my gp and she prescribed an antihistamine which causes drowsiness. Tried it last night and slept for 11 hours! 

ali 3.141592
Member

Re: August 2021 Chemo Starters

So had my second round of docetaxol and phesgo on Wednesday. They managed to not have me react that time after another pile of piriton and extra steroids up front. Nausea seems worse this time around but the tapering of the steroids has at least stopped me crashing on day 3. I made it past lunchtime!

Does anyone else get really bad brain fog for the first 5 days or so? I feel utterly away with the fairies and can’t tell if that’s the chemo drugs, the mild lack of sleep, the anti ovary injection or a combination of all 3.

I’m really appreciating having my diary of symptoms from last time, makes planning so much easier. I’m expecting to utterly crash this weekend so have basically marked the next two days as mostly bed days where I pool enough energy to cook a main meal and supervise some washing getting done.

For those of us dealing with the hair loss I found this video really helpful for learning to tie a few different styles of head scarf https://youtu.be/5yeNjDPbEZY after raiding a few charity shops I got some cheap scarves in lots of different shapes, colours and sizes. I can pretend like I have long hair again and have something to fidget with (I always used to play with my hair). For those on the cold cap massive fingers crossed for you all that it does the job 🤞