Beauty despite cancer do a nice scalp care kit if any one is looking for anything also quite a few of us had silk pillowcases after loosing hair, felt gentler on head Shi xx
They are 5 and 10 and have luckily been very understanding of their tired mum this weekend, hopefully in the knowing that I will spring back to life around Thursday (fingers crossed from last round).
The hair has been coming out thick and fast from underneath and the sides but no bald patches now, might try out the bad of headscarves tomorrow!
I’ve booked on to the look good feel better course for the end of Jan, hope my eyebrows last until then
Hi @scientistamafier , sorry there are no sessions for you to book just now. Here is a link they sent me afterwards with details of things they discussed. It has some helful links.
Just as a summary, this is what I found helpful and also maybe learnt:
Shave hair with clippers with a guard on never off. no2 recommended initially. Can go shiny bald but only if no blemishes on scalp.
For most people hair will grow to about 1cm within 3 months of chemo 1 inch within 6 months, and something resembling a very short hair style within 9 months. Everyone is different though these are just typical times. ( i was hoping for more hair quicker but maybe just wishful thinking!)
Cold capping helps with regrowth ( I didnt know this!). If cold capping she suggested not cutting hair really short as even if 80% gone it will give you something to show under hats etc. but can if you prefer. I wasn’t paying close attention here as I’m not cold capping!
Foaming facewash is good for for scalp cleansing, with tea tree oil if you can get it.
if scalp is itchy, a few drops of essential tea tree oil in hand hot water , and gently dabbed on the to scalp with a soft facecloth wil help. ) never put tea tree essential oil directly on scalp. Aloe vera with tea tree is also a good scalp calmer. and will help mositurise. If still dry try Re-Gen Oil ( good for scars as well apparently). Australian Purifying Te tree Cream is good if scalp is really itchy.
Wear SPF 30 ior more on scalp if going out in the sun.
Skin Hair & Nail supplements from H&B help with strengthening hair folicals for new growth ( but won’t obvs stimulate new growth, nothing will)
When you get new growth try a mild shampoo with Rosemary -it has mild antifungal and stimulating properties ( Faith in Nature mentioned), . Also Wileda Revitalising Hair tonic.
Can colour hair after 1" of growth, only if the hair is stable and no scalp issues ( hard to find a salon to do it.). Must do a skin test. No bleach/ammonia. Temporary hair colours that wash out are ok.
Chemo curls are a thing , can last 18 months before going back to normal. Chemo doesn’t impact your natural colour but if already going grey it is likely to grow back gray.
You can email or call them with specific queries and they will try and help.
That’s mainly what I took away from the session. Hope that helps a bit xxx
Hi @Tabby-Lou welcome . yeh the whole food/loss of taste thing is a mare on top of eveything else! hope you get a break from it soon. Can’t be easy with little ones as well. Take care xxx
oh this is Jennifer Young! love the look of this thanks Shi, might ask for it on my Christmas list
I think the waiting area design where I go doesn’t lend itself to this welcoming atmosphere. There is one group of eight or so seats arranged around a coffee table, two or three groups of four chairs near the haematology unit and the other chairs are all in a long line, backs to the wall of a corridor. To be fair I did sit in the larger group of chairs last time and had a chat with others waiting there.
@copperycat lots of great information there, thanks. I am torn between leaving it to fall out naturally and getting the hair clippers going. I am going to try and get through this week and reassess. Interesting that they said greying hair might grow back completely grey. I have maybe a dozen grey hairs at the moment and it will be interesting to see what happens afterwards. My dad is in his 80s and still isn’t completely grey, and I seem to have inherited these genes.
Just had a phone call with my consultant. He wanted to check how I had got on with my new chemo and we had a quick chat about the side effects I had. He says to try paracetamol first for any joint/muscle pain and move up to Ibuprofen or co-codamol.
Anyway my bloods are fine so all systems go for another dose of Abraxane on Thursday.
Feeling a bit sad today. I am turning a corner after last round of chemo and get my next one next week.
But my issue is I have critical illness insurance with my mortgage and with a BC diagnosis there are two levels of payout . Lower One for BC and higher for terminal BC. They confirmed all my diagnosis with my consultant and they have said they will pay the higher sum. I am taken aback, as my CT scan has shown a lesion on my spine but they can’t be sure if my cancer has spread. My lymph nodes are clear. So they are going to rescan me once my chemo has finished to see if anything has changed . Consultant told me it was medium to low risk it has spread - 50-25 percent. So I wonder at the insurance company paying the higher amount. I don’t care about the money. Would be happy with the lesser amount which will help whilst I am not earning through chemo. My husband wants me to contact my consultant to check what he said to the insurance people. I can’t face it , going through chemo is hard enough, and will he really tell me anything different until I get my scan results after chemo? My head is all over the place . Am I reading too much into it? It’s such a rollercoaster
Mate I’m so sorry you’re going through this @copperycat it really is a rollercoaster.
My take would be your consultant is just trying to do you a favour, he’ll be sat at his desk with the option of two different boxes to tick for the insurers (neither which will
Impact your health/treatment plan etc). So he’s opted for one that will provide you more money. I wouldn’t read more into it than that. You could spend some of the extra money on something fun to take your mind off this shitshow maybe?
Sending so much love xxxxx
I would agree with that and till you’ve discussed treatment with your consultant and got results do keep positive and remember there are breakthroughs and trials happening all the time with treatments do ring the number on here and use the someone like me option or speak to a nurse if you need or want to Shi xx
Hi copperycat, really sorry to hear this too, not what you needed. I agree with annemanc though. I think it’s likely he it she has just ticked the most helpful box financially. I hope you can have a conversation with your consultant about this when you see him/her. Sending hugs xxx
Ona different note I ended up at the hospital yesterday with a temp of 38.8 and severe sickness and diarrhoea. They gave me antibiotics and when my temp dropped to 37.3 let me home phew! Much better today thankfully
So glad you replied @copperycat I’ve been thinking about you lots. Sorry to hear you ended up in hospital, glad you’re home again.
If you’re feeling well enough maybe you could do a fancy night away somewhere w your husband? A change of scene always cheers me up.
Thought I’d suggest as it’s on my mind…. Am planning a mini break myself for end of chemo ahead of next gruelling stuff (surgery, targeted therapy, rads, tamoxifen and maybe some injections to close down my ovaries - so much to get head around!). I reckon we all deserve a night in nice hotel w fluffy robes and those free slippers! Xxxxx
Yes! Brilliant idea! We deserve some pampering. Might try and get one in between chemo and radio in the new year , especially when it cold and horrible then🤗xx
Hi copperycat, so sorry to hear you had to go to hospital, but glad to hear you’re out again.
Annemanc, a minibreak sounds wonderful! May look into that for after chemo too…
Can I ask whether those of you on EC have it every three weeks or every two weeks as dose dense? Interested to hear your experiences of that…
@daffodil1 my EC was every three weeks which was good as I got the bounceback time. I found it easier than Docetaxel but I didn’t really suffer w nausea on it. I didn’t get morning sickness either though during my pregnancies (wonder if there’s a link as my initial chemo questionnaire asked about morning sickness). Are you every 2 wks? Xxxx
Interesting comment about morning sickness. I had one moment of feeling nauseous with my first, and threw up quite publicly (at a scout camp) with my second, but otherwise no problems. I have had indigestion and “stomach awareness” but other wise all good so far.
I am still dithering over what to do about my hair. It is coming out thick and fast now. My hair is normally fine, but lots of it, so it still looks like a normal head of hair at the moment. It is just the trail of hair I am leaving about the place that it depressing me - constantly having to pull it off my collar and neck.
When I was at the hospital on Thursday I made an appointment for a wig consultation that will be on 6th December. I initially said that I didn’t want to have one, and am still a bit on the fence. I think if I can find a “fun” one I might be tempted.
I keep talking about using the clippers to cut my hair really short. I think that will just stop the irritation of the strands of hair going everywhere. My husband can’t understand wanting to cut my hair now and having to deal with that, but then also wanting a wig to hide the fact that I have lost my hair. I think I can do both no hair and wearing hats/bandanas for work and putting a wig on when being in public.
I hoped that writing things down here would help clarify how I felt but I don’t know that it has.
Please don’t forget your Macmillan’s at your trusts have pre loved wigs that you can try and buy for a donation you might find one that will do or do till you have your fitting Shi xx
So im on week 2 now after my second round of EC, god that first week is a killer isn’t it!!! More nausea despite the extra tablets they gave me and the acid!!! I need to get into a healthy eating mindset but I find that the first week I just can’t stop shovelling crap in my mouth despite feeling rough before during and after eating it!
I keep thinking I should be one of those young and energetic ‘embracing the change’ people but I am definitely not a glam patient right now
My hair is coming out at an alarming rate and I’m picking up a wig on Thursday. I’m also wondering how normal you all keep your social and active life? Are you still going out and about and doing all your normal things on the good weeks or are you staying relatively sheltered to avoid the lurgies of winter?
Last question as well, I’m thinking about having a line put in (probably the vascular one on my chest) as I am rapidly developing a fear and dread of the cannula’s and needles from multiple bloods and the chemo. I can only use one arm and my veins are terrible. How’s everyone else having theirs, line or cannula? I have 1 more EC to go and then I’m onto ‘T’ for 3 rounds followed by radiotherapy for 15 sessions, hormones and more surgery……….will this ever end!!!