October 2017 Chemo Starters

[CherryBakewell]

Morning Dizzy Brummie 

I'm cold capping but still washing my hair (very gently in a bowl, lukewarmish water, Paxman (cold cap manufacturer) shampoo, Philip Kingsley no scent no colour conditioner, air drying and minimal products and brushing. I'm washing it very infrequently - think I last washed it on Monday so will be doing it again today. Am anticipating quite a lot of loss post the infamous hair ravaging cycle 2!! Given my hair is naturally curly I don't really ever get greasy hair but the rats' tails are looking particularly rancid today as I haven't yet washed out the conditioner from Wednesday's cold cap session!!! If anyone had told me a few months that I'd have been roaming round in public with week long unwashed au naturel curly hair I'd have never believed them!!!

Shouldn't be grumbling though cos (touch huge planks of wood) I know I'm getting off very lightly so far...

🍒 xxx

PS  Yes, we should try to avoid all parabens in products now 

[Ruth07]

Thanks Karana

[Shi]

Chaffinch, that’s how I was, bit of a burn, nothing too bad Thursday teatime so I drank more water, still a bit of a burn Friday morning so I got on the cranberry juice, by Friday lunchtime still a bit of a burn still no temperature, so I rapid responsed and the hot me down. My wee sample showed nothing but they did pick up my neutrophils were out the window 0.6 and yesterday I was 0.5. Which puts me at high risk of sepsis which is why I’m here in hospital. Please ring your rapid response chafginch, just to check it out it’s all ok. I know crazy because other than the pee starting to burn I thought I’d managed 1st fec ok. Please let me know how you get on. Shi xx

[karana23]

Hi Ruth, I love Tropics products, have had a couple of Pamper party's n the pub (the next one is the same day as my 2nd lot of chemo so may just have to pop down and then go back into hiding!) I love their Smoothing Cleanser, it's a face wash and you get a lovely soft bamboo face cloth with it!  Their shower gels are lovely too, they come in 4 different flavours and are only £10, which is obviously more expensive than a regular shower gel but I think we're worth a bit of luxury!!! Xxx

[SueW]

I have put a sign on my porch door
Please use anti bacterial gel on entry and no germs thank you
I have also put a big hospital strength anti bacterial gel in there x

[karana23]

Hi Ruth, I love Tropics products, have had a couple of Pamper party's n the pub (the next one is the same day as my 2nd lot of chemo so may just have to pop down and then go back into hiding!) I love their Smoothing Cleanser, it's a face wash and you get a lovely soft bamboo face cloth with it!  Their shower gels are lovely too, they come in 4 different flavours and are only £10, which is obviously more expensive than a regular shower gel but I think we're worth a bit of luxury!!! Xxx

[Shi]

Biotene mouth wash, sorry everyone, predictive text. Shi xx

[Shi]

Thanks dizzy brummie and suew. I had an m&s sports bra with zip down the front and the racer back leaves good underarm space if they are having your nodes, just go a couple of sizes up I got 40dd so it could accommodate bruising and swelling ok after of when my actual size before was 36dd on a normal bra. Yes boooo to low neutrophils, hope the fly back in after their holiday away from me fighting for ready for 26th. Bioremediation mouth wash after brushing after every meal has helped keep mouth sores at bay so far, just a tip if any of you are suffering. Hope everyone improves and has a great day. Love and sparkles shi 💕✨✨✨🌈🦋

[DizzyBrummie]

Big sausage finger typing going on soz

[DizzyBrummie]

Firstly, apologies I keep hitting the pink button so if I’m hugging willy billy I’m sorry.

Secondly, I have another question. I’m guessing that hair products should now be specifically parabens free. Has my one decided to just forgo washing their hair completely? I did this for a few months a long time ago when I was at uni and my hair has never been in such good condition. Can’t remember why I gave in and washed it, might have been for graduation. Now it’s short I’m thinking not wishing but just rinsing would work even better if I can get passed the greasy stage. I think only wishing once a week would hit greasy on day 2 anyway.

Any thoughts?

[Chaffinch17]

Hope you feel better soon Shi. My wee seems more acidic but I don’t know if I’m just paranoid about getting a urine infection. I have been drinking loads and not leaving it if I need to go, keeping everything on the move. I have some test strips that hubby bought when he got infection just after being diagnosed with diabetes last year. So keeping an eye on it.
There are upsides to this lark though. I have been excused early morning allotment duty by hubby. He hates going on his own but it has gone to wrack and ruin this season so he is off on a rescue mission before we get a rude letter from the managing agents. Much nicer browsing on here sitting in bed eating toast and tea 😊

[Ruth07]

Morning everyone, glad to hear all the good posts. Karana I have a friend who works for tropic and have just asked her to send me a list of recommendations as I have decided to dump all make up where I can't guarantee the contents. Let me know if you have any favourite products? I already clocked your deodorant recommendations earlier in the post.

Did my first visit cancellation today - a friend I hadn't seen for ages was due to pop over but now has a cold. So pleased she had the consideration to ask first rather than just turn up. I know I am not chemo compromised yet but figure the last thing I want is to go into chemo with the sniffles (plus might they delay me? That would be horrid as already feel like I have been waiting forever!!!)

Good luck tomorrow jencat I will be just a few days behind you.

Had a lovely bottle of red with my steak last night but it sent me to sleep by 9.30!! Don't think I have the belly for alcohol anymore! I stopped around my surgery and only had a few glasses since - looks like I am joining you On that wagon 🍒.

No sun here yet (Windsor) but fingers crossed for this afternoon 🌞🌞

Hope everyone has a lovely day.
Rx

[CherryBakewell]

Morning Shi

Sorry to hear about your unplanned mini break at Casa NHS but thanks very much for taking the time to come on here to warn us about your symptoms. To be fair urine infections weren't on my radar (I've been very lucky though as my only real side effect seems to have a been a couple of days of Father Christmas cheeks) so I'll be upping my water and elderflower bubbly intake today. Ha. Hope you're feeling a lot better very soon and can crack on with your next cycle...

Happy Sunday Morning to everyone 

🍒 Bakewell xx

[SueW]

I had 2 ops before before chemo. Lumpectomy when lymph node involvement found in August then axillary clearance in September
Both totally doable so anyone who still has ops to come please don’t worry x
2nd op was more uncomfortable but think it was because nerve ends already heightened
Sorry to hear you are in hospital shi wishing you a speedy recovery and thank you for the kit tip xx

[DizzyBrummie]

Thanks again Shi. I’ll be looking out for those pesky blighters.

I hope you’re better soon and that it doesn’t delay your next cycle.

[Shi]

Hi dizzy brummie parabens are nasties that’s in some shampoos, toiletries and makeup and whole host of thing none of us probably thought twice about before diagnosis, I’m going to try avoiding as much as possible. Beauty despite cancer do brilliant scalp care kit one of the ladies from May form has used it and when she went onto the t part of her fec-t he hair already started to grow back. Just make sure you order the oil too as they don’t include this in the kit anymore if any of you fancy it. Did anyone else from Oct started end up with a holiday at casa nhs, or is it just me with the neutrophils taking a holiday for this round? I am hoping they go up so I can go home and then have next fec on 26th, I don’t want delay really. Well done dizzybrummie for getting through all that op in time to start chemo 😍😍love and sparkles to everyone 💕💕💕✨✨✨🦋🌈shi xx

[DizzyBrummie]

Thanks Karana

[karana23]

Rach, parabens are in a lot of toiletries and make up and they tell you to try and avoid them as research has shown that there is a link with BC also Aluminium as well?  A lot of the time they put parabens in products to extend the shelf life of cosmetics ....hope that's a bit of help for you!! Xx

[DizzyBrummie]

Thanks Shi, hope you’re on the mend!

I’ve already had my surgery, lumpectomy followed by reconstruction by LICAP. Just about recovered by the time they put in my portacath in time for FEC.

[DizzyBrummie]

What are parabens, not heard of this sounds like it’s in all toiletries, makeup etc.?

[Shi]

Hi ladies, I had fec on 6 Oct and have been in hospital since Friday with urine infection and low neutrophils. Just wanted to warn you all I had a bit of a chill last Wednesday but didn’t think too much of it when my pee started to burn on Thursday again thought just drink more water, I didn’t have temp over 37.5 at all but by Friday morning and my pee was still burning, I rang up and they hospitalised me as there was infection and the blood test received low neutrophils. I am also on may chemo forum, everyone on there is amazing and knowledgeable about the chemo journey. I’ve dodged the nausea on this fec round, just strictly took antisickness and steroids as told to, but my neutrophils have took the tumble. Love and sparkles to you all. I’ve had my op in August if anyone is still to face surgery I had a therapeutic mammoplasty with sb, so here if I can help at all. ✨✨✨💕💕💕shi xx

[SueW]

Morning all
Sam glad there is some improvement x
Mascara I am not wearing want to try and keep lashes too but I do put on eye shadow and liner if I am going out without a wig with my shaved head
Coconut wax I got done of ebay called Dax coconut wax about a fiver haven’t tried it yes as still have hair
Got my stick on eyebrows for when they go
Woke up this morning feeling ok in myself and no headache now I can drink coffee with coffee mate so think it probably was caffeine withdrawal as much as anything else
Tongue a little furry and taste buds not quite right but apart from that I feel good
I hope you all have s wonderful day no sigh of the sunshine in Birmingham yet but I am sure it is on its way xx

[karana23]

Morning ladies!

Meesh, re mascara...a friend brought me some lash serum which I've been putting on morning & night and also been putting it on my eyebrows (thought why not!) but I've also been using a Tropics mascara which is paraben free (in fact all there products are which is handy to know). I'm not sure if I've said it before but the thought of losing my eyelashes and eyebrows freak me out even more than my hair!!

Another sunny day here ☀️ xxx

[Sam34]

I'm ok now Meesh ready for next cycle 26th xx

[Meesh73]

The sea bands got on my nerves a bit too, I have fairly skinny wrists but have had them off nearly a week and the marks from the little bobbly bits have only just gone. I felt a bit wobbly in the mornings for a few days after my first session I think breakfast will help. 

[DizzyBrummie]

Not feeling queasy as yet but the sea bands are getting on my nerves. Reluctant to take them off though.  

I am still feeling a little wobbly though but hoping tea and toast will sort that out and that I’ll be up and about today. Can’t face another day in bed. 

[Meesh73]

Morning Rach, are you feeling less queasy today?

[Meesh73]

Ali, I seem to remember someone on the September forum mentioning coconut wax for your scalp, I'm not sure what is or where to get it as presumably that's different to coconut oil?

[DizzyBrummie]

Morning,

Sam34, I haven’t seen what you’ve been going through but my nurse did mention back pain in relation to WBC and neutrophils being made in the lower spine which can cause aches and pains. Probably still worth getting checked out.

Rach x

[Meesh73]

Hopefully they'll ease off too, maybe worth a call to the nurse just to confirm it's all normal even if it just saves you from worrying.

How have you been other than that?

[Sam34]

Morning 😊

Yes chest pains have stopped but still have a few back pains x

[Meesh73]

Morning everyone! Hope everyone's had a good night. Just had a quick whizz through the posts from yesterday evening as I was out at my friends for dinner, which was lovely and made a nice change from being stuck indoors.

SueW, loved the hat, looked fabulous!

Sam34 good to hear you're still with us and hope you're feeling a bit better today (re: pain wise).

chaffinch, ck you were both up late last night, hope you slept well and good to hear from you again ck!

Hope everyone's feeling good today. Jencat you start tomorrow? Rest up today, try not to worry and get plenty of fluids down you.

Was wondering what people are doing re: mascara at the moment. It's the only make up I really wear, I've bought a non-waterproof paraben free one but have only worn it once since chemo (for my interview). Anyway due to go into work this week and not sure I want to go in without it, but would really prefer to hang onto my eyelashes (gosh I sound terribly vain)!

[Chaffinch17]

Great news CK 😊. We worry when we’re a ‘Man’ down! Talking of which, I think someone else also remarked that we haven’t seen Patchwork Girl for a while?
Yes Jencat, it is Cheltenham, I’ve lived here for almost 30 years to the day which makes me feel very old! We really don’t appreciate our festivals we have music, science, jazz etc as well as the literature one. We have been to quite a few literature events over the past couple of years and took the children to a few when they were small.

[CK]

Hi Chaffinch and Meesh
Im here!!!! Just been making use of my goid weeks and orhsnising a fundraiser for BC awareness.
Its very good of you to notice Ive not been on much but after next Tuesday when my mum goes vack home 'I will be back'!!!:D

[Jencat]

Yes, there's a lot of hills there Sue! My friends thought they'd take YD and me up them! Beautiful,but hard work climbing them! Well they were for me, but I'm unfit! Going up was bad enough, but coming down was worse! I'm going to make sure I go for more walks whilst I'm at home, even if it's just walking round the block! xx

[SueW]

been to malvern as a child remomber visiting the hills 

always wore factor 50 as had a suspect mole removed in my 20's but also been advised by onco when i mentioned going on holiday that so soon after chemo and rads skin can still be sensitive so he said better to err on the side of caution

I am still taking my vitamin d supplement mentioned it to chemo nurses and they said no need to stop 

I have bought sanex hypo allergenic shower gel and feels okay at the moment and my deodrant is mitchum sensitive fragrance free i have both spray and roll on as far as i am aware neither contains parabins and both half price at boots at the moment 

[Jencat]

Glad you've had a nice evening Chaffinch, sounds very civilised! Do you live in Cheltenham? I know they have a Literary Festival this time of year. My YD went to uni there and I meant to go to the festival whilst I had the oppportunity of somewhere to stay (albeit student accomodation!) but never managed it xx

[Jencat]

Your sister's wedding sounds lovely Sue. Good idea not to go back to work until afterwards and the break in the sun will benefit you too. Have you been told to use factor 50 from now on?

Blueash posted about vitamin D and bc, but I don't think you can take supplements until after chemo. I hadn't really thought about it before I read the article she posted. My daughter is into using natural products and not using parabins. However, my hospital recommended Simple products during chemo and they contain parabins!

Don't know why they don't just give us longer sick notes right from the start because it's obvious you won't be back in 13 weeks if they look at your treatment plan!

Hopefully if I do see my friend next week, we'll be able to arrange a date for me to stay. (A little more complicated as our daughter's are best friends too, so they have to be involved and Sue's daughter no longer lives at home) Have you been to Malvern before? xx

[SueW]

evening Chaffinch x

glad you have had a good evening ... isnt it nice to get out and about and have some fun 

[Chaffinch17]

Glad to hear that you don’t need treatment for your adrenal glands Sue 😊
We have to see having more time for ourselves as an upside to all of this.
Managed to go to see Hollie McNish at the literature festival this evening which was nice. Only heard one person cough! Walked there and back then watched Strictly so very enjoyable.

[SueW]

my sister is getting married in Alu deniz in Turkey she hasnt decided yet if it is beach or yacht wedding but my mom will also be 75 when we are there so double celebration in the sun (with factor 50 of course) 

I am not convinced that bc is related to stress either but i also had a vitamin d deficiency which could have been a contibutory factor and although i dont need treatment for swollen adrenal glands they are the ones that cope with stress so not willing to take any chances 

Ha ha ha Geography was never a strong point of mine ... once you know when you are coming we can exchange mobile numbers at least I wont have to fit in with work lol 

My frst sick note is 13 weeks but i wont been anywhere near finished then either but my doctor will just renew it xx

[Jencat]

Hi Ali, I am missing work, but I haven't started chemo yet, so I've been in limbo! I'm a bit worried that I'm really going to miss being at work or even worse, I won't want to go back! I was hoping to go back just before or after the May half-term, but perhaps I'm being too optimistic?! xx 

[Jencat]

Sue, that would be lovely I'll be coming up, not down! Lol! Hopefully I'll stay with my friend (she's Sue too!) before Christmas, if not soon afterwards and we should have our 'good' weeks at the same time

I'm still finding it strange being at home, but that's probably because I've only just finished work and I haven't started chemo yet.

That sounds a good idea to rethink your work situation when you do go back. I'm not saying stress caused me to have bc, but I wonder if it didn't help. I had an elderly aunt that took up a lot of our time as she'd never married, so when she was poorly,myself and my daughter's took on daughter/granddaughter roles and spent a lot of time cleaning and sorting her house, finding a suitable home for her when she couldn't cope living alone as she kept falling and when she died last Summer, arranging her funeral and burial (which wasn't straightforward and caused me quite a lot of worry) Work was also stressful for a few reasons and I ended up cutting my hours as I decided although money would be tight, my health and well being were more important and I wanted to be able to spend more time with my dad (he's 90 in Nov) Ironically I was just feeling the benefits of this decision when I found the lump!

Where is your sister getting married? That will definitely be something for you all to look forward to! My cousin's son is getting married in June at Hever Castle, so that will give me something to look forward too.

Good idea to go back to work before the Summer Hol! My sick note at the moment is for 4months, but I'll be off longer than that as I'll have barely finished chemo by then xx

[Sam34]

It's not constant but if I still have it tomorrow I will,it does say it can be a side affect to my hormone treatment x

[SueW]

i have ordered some medical wig tape from amazon as i felt my wig moved a little bit but only to a certain point and stopped fortunately i didnt feel like it was going to leave my head completely as i did not fancy chasing it down the road in case some one thought it was a guinea pig or ferrett or some other small animal x

[Ali49]

Loving your hat Suew. My hair is literLly falling out and my head is sore. I wore my wig to go to asda trying to get wig confident!!

I am with you on the job front Sue. I love my job but don't miss it or the stress! Everyone keeps in touch in a great way. Send me messages and are very supportive without being overbearing. I have the same plan for July too!! Jencat i hope you are ok and not misding work too much xx

[SueW]

yay success coffee with coffee mate instead of milk tastes good x

[Jelly tot]

Sam34 should you get your chest pain checked out hun ?

[SueW]

Jen malvern not far from me so if you come down and want to meet up for a real life chat give me a shout I drive so if its a good timeonchemo rollercoaster i could come to you only about half an hour away 

Do you know Jen in all honesty i have put work to the back of my mind the people that matter have kept in touch and i had some lovely flowers off the head last Friday but i do suspect they come via his PA who i have been friends with for 15 years she probably told him too lol 

I make sure i go out every day even if its just for a walk, my house has never been so tidy or my ironing done so quickly and it stays spotless at least until my hubby and son come home 

I nap in the afternoon and as each week goes by i can feel the stress of such an intense job leaving me 

depending how i feel in the future i may ask to change my position in work if possible to a less stressful department even if it means a pay cut. 

My sister is getting married in June next year so i am going to make sure i stil got a doctors note so i can go as should have all treatment completed by end of April/May as will still have rads to do after chemo. If i go back to work before the wedding i know i wont get the time off. Plan to go back to work about 2 weeks before we break up then will be back on full pay for 6 weeks holiday but will do those 2 weeks on part time reintegration x