February 2019 chemo starters

[MBJ]

Hi Girls

Oh just had a lovely lunch out with my husband, my sister and brother in law. But my sister was so upset when it was time to say goodbye. They live in Hampshire and she has been down loads even came with us for my first results. They are off on holiday on Tuesday to Kuala Lumpur (not sure I have spent that right) so I think she feels she will be so far away when I have my first chemo. Oh this bloody illness affects so many people, I hated seeing her so upset. 

Also ladies I have a question for any of you who has had a lymph node clearance. I think I am developing some lymphoedema as my arm is feeling  sore and my sleeve feels tight. I also seem a bit more swollen under my arm by the new boob. Oh this is the illness that keeps on giving as one of you rightly said. I think I have probably over done it this week, I have been out every day meeting friends or shopping. I think I have tried to get six months activities into a week 😂. So jimjams on now 2 paracetamol and a blanket watching MasterChef. They are cooking game 😝I am a vegetarian..

[Seaside Sar]

Oh dear, Marlyn, I hope you feel a bit better soon.

Fasting - I didn't fast before my chemo and the nurse said she would have been reluctant to give me steroids that morning as they should be taken with or after food. I wasn't sick at all but just felt nauseous on and off for the first 5 days or so. Steroids didn't make me hungry at all. I was actually struggling to eat a lot while I was on them. Right now I've truly got my appetite back, although I still can't face tea or coffee!

Hair - mine is still in tact (I did use the cold cap) and am now 11 days post treatment. Feeling slightly nervous as day 14 is meant to be the time my hair might start falling out. I keep taking pictures of it thinking this could be the last time I look like me.

Keep going everyone. We will get through this and each day is a step closer to the end of this horrible chemo. 

[daisydi]

Sissy when you do fasting are you not meant to have anything other than water.  I am thinking about doing this but not quite sure what I should be doing??

[Sissy60]

I’m going to do the fasting cos a few friends  said it really helped side effects and when they didn’t do it things were way worse... it’s not easy as steroids make you hungry but I figure I’ll be so anxious two days before I won’t eat anyway...and everything I researched persuaded me. My nurse said ok.

will report on it anyway...

Marlyn ... what a horrible thing I expect they will give u reduced dosage next time so you’ll be ok. So sorry you had to go through that and feel better ASAP🌷. Xxx which one are you on? Maybe get a change ?

[Rosina]

For anyone who is anxious out there:

I have been doing yoga nidra at home in the afternoon. 

It is very relaxing,

https://yogainternational.com/article/view/5-benefits-of-yoga-nidra

All you need is a quiet spot to lie down with a blanket over you ( your bed !) and you just listen to the guided meditation. Lots on YouTube to try :

https://youtu.be/v9chHovre6Q

Just an example.🌳

[Implausible]

Oh Marlyn:(  I was thinking you had been quiet 😞

I hope you'll feel better quickly now!   Got to admit I'm dreading the nausea/sickness part 😞

Trixie, I did have a read up on the fasting but decided it wasn't for me.  I asked my chemo nurse about it too and she was very anti, said I should be keeping my strength up with a balanced diet. 

And I'm totally up for the Pussy Riot thing, as long as we don't end up in a Siberian prison:)

Sarah

[Trixielady]

Hi Marlyn 

So sorry to hear about your hospital stay, hope your going to feeling better soon, i thought my x3 hourly for 5 hours was bad enough on my first day, think I'll stop hoping for a change for n2 incase its worse xx I've been having lemon & ginger tea, I fasted before my first unsure now about doing it again,xx big hugs 

Anyone else done fasting before chemo? Did it help with the sickness?? Xx

[Rosina]

Oh Marlyn,

so sorry to hear this. 

Hope you feel much better soon.

Fresh grated ginger root in your beverages wherever possible.

 I have it in my tea and in my freshly juiced apple / carrot/ ginger zinger.

Not daily but I was doing this prior to chemo too.

 I also start every morning with a warm  lemon and water drink.

Great liver cleansing.

[Marlyn]

Hi rosina,

i am so glad you have been so well. I however have been the polar opposite! Had chemo Thursday spent the day in hospital Friday on an iv drip, I had uncontrollable vomiting....i feel like I have been hit by a truck......at home now, in bed and extremely tired.....hoping I get better bit by bit xxxxxx

[Sissy60]

Maybe we could form the new Pussy Riot band... and rock out the little and large look. We could make a fortune! Implausible has purrrfect look for it!

My 19 yr old daughter quite jealous of my pert one... am I weird in quite liking the no nipple look?

Am so looking forward to my Matt Lucas with odd boobs look ..NOT.👩‍🦲 Almost wish I was starting tomorrow but know I will be a basket case day before! Thank god for the tranx my pal brought me over from the States🥴🥴

Ally- baby aspirin if you check online has a lot of evidence in proper trials to help prevent any nasties:) I’m doing everything! Will also share what I’m learning from my cancer treatment nutrition person:)

[Trixielady]

Me too  ,  any of you Russian strippers know when can wear normal underwire bra's until we don't need them can't wait to have two lovely pert boobs xx

[Nettienoo]

Implausible - “pert one like a Russian stripper” has really set me off giggling. I too have a Russian stripper one (albeit nippleless so unlikely ever get a job as a stripper in Russia) and a droopy one with a nipple. Not sure which I prefer really. Maybe down the line I may get a nipple tattoo. I’ve heard you can get stick on ones but have visions of going to a bra fitting and having it fall off and roll across the floor of the fitting room and out under the door! 🤭

[Trixielady]

Hi Rosina, sound's good but don't go over doing it tho, they come when your least expecting them xx

I thought I was lucky getting away with being sick on the first night and never been sick again although often felt it xx

[Rosina]

Hi Trixielady, 

I haven’t had any side effects. I forgot to take my anti emetic at home ( after being dosed at the Hospital) before my evening meal. The leaf let inside the box said if you forgot then take the next dose as usual. That would have been the following morning before breakfast ( 30 to 60 minutes before) and I forgot again. I rang the chemoward to see if I could ‘book ‘ the same nurse again as I really get on with her. She said I could request her on the day but no pre-booking possible. All the team is excellent she said . She was pleased to hear that I was doing so well and said that I was very lucky to have no sickness. She did recommend that I continue with the course of anti emetic tablets but I haven’t as I am not nauseous or anything. I actually got myself into a tiz last night worrying about why I wasn’t feeling sick which is quite funny thinking about it now. I have a 3 day course of steroids (which I am taking, even though my appetite and energy is good).

 I had my first white blood cell boosting injection today to. I have 4 left to go. 

Personally ,I think that we are all different with different constitutions . I know that I am an optimist by default with a silly side so this must be to my advantage . I don’t think I could be an SEN teacher if I couldn’t laugh at myself and remain upbeat 🤩

Re. my hair my nurse told me to be gentle with it. I washed it with a gentle shampoo this morning (nurse told me to leave it alone after chemotherapy for 2 days , so I had conditioner on it from Thursday under a fabric zoggs swimcap under a beanie) . My friend who came and sat with me said the hot pink swim cap sticking out under my grey beanie bothered her so she tucked it in so that it didn’t show. 😂

I guess I will find out how I respond as the cold cap works for 50% of those who use it. So I guess I am a walking experiment 🤓

[Implausible]

Ha!

I'll join the circus with you 🙂

I'm also a little lopsided for now with one DD and droopy and one B-Cish and pert like a Russian stripper! 😄  

Eventually apparently the doc will even them up, but right now they are the least of my worries, unless I start walking in circles 🙂

[Sissy60]

Love the photo Implausible! You are a proper hottie! So hard to imagine that you’re doing this bloody chemo business...

I’ve got blonde hair extensions (not Katie price style!) and love them .. I imagine they will go first. Wasn’t going to cold cap as I hate the cold but thinking I will now after encouraging posts ..such a bummer about not being able to colour fir 6 months . I wonder if henna is ok?? Was told it grows out grey... def don’t want that and a wig in summer doesn’t appeal but I’ve got a couple so I don’t scare anyone. Am using follicle strengthening shampoo in advance in a vain attempt to keep it for longer. So with my tattooed eyebrows , baldy head, no lashes and my one FF cup and the other a B cup I can see me joining the circus in a couple of months😂

[Ally2019]

Hi Implausible, 

Thank you, I really appreciate it. I will look at the wigs too xx 

[Trixielady]

Rosina, the lyrics are lovely x x

So when will you know if the cold cap is working ? What has your nurse said ?

Not cold capping unfortunately due to migraines but my nurse had said due to epirubicin that my hair should start coming out 10 days into chemo luckily for me it hasn't yet tho, so I've turned from stressing about starting chemo now back onto losing my hair again this rollcoater just won't stop xx how are you feeling? How you managing with side effects xx

[Rosina]

Hello re. The cold cap

again. I had it on for 30 minutes before receiving my drugs. Then for another 40 minutes as my drugs were administered by my chemotherapy nurse. Then I was disconnected for a quick loo break and then re- connected for another 1 and 1/2 hours.

Total time 30+40+90 minutes so 160 minutes in total or 2 hours and 40 minutes.

[Rosina]

Re. Cold cap my nurse detached me so that I could go to the loo after she had given me my drug dose. She said I was good for up to 10 minutes ( more than enough) 🤪

[Implausible]

Oops pressed post too quick 🙂

I was going to go on to say that we all need to remember to relax and have fun, more than ever right now.

No way would I spot that that is a wig, btw!

I forgot that low temps are a problem too.  So much to remember.  Hope you feel better soon, tuck up and put up the central heating!

[Rosina]

Glow :

https://youtu.be/rAGSwf0eVIw

[Implausible]

You look fantastic and definitely having fun!

[Trixielady]

[Trixielady]

Wow Implausible, love the hair colour it's fantastic wish I could be so adventours, I'm dull and boring and terrified of change but did take the bull by the horns on diagnosis had fantastic hair but cut it short and dyed it dark cherry and I've hated it every since, so was pleased to put my wig on for a trial run,, so funny evey time I walked passed a mirror I had to do a double take xx

[Trixielady]

Hi Ladies, had a good night but now a bit worried my temperature is only 35 got a slight headache but hubby is saying its too low for paracetamol, Trixie my dog is saying mam don't move I want to be on your lap.

Does anyone know when hair might start going only had one chemo session ?

Loved my wig wore it last night and felt fab x Hope you all have a good day xx

[Susie B]

Hi Implausable, I had my first chemo session on 8th Feb with cold cap. I just ate and drank as normal in the lead up to chemo day. During the session I drank water as I normally do during the day. Going to the loo was easy, just detachd the tubes from the unit and a nurse sorted out the drip. I must admit though I looked as though I was about to go on the rugby pitch or something when I saw myself in the mirror in the loo. Not the best of looks but if it saves some of my hair it'll be worth it.. 

[Implausible]

*waves back* 🙂

[Edinbird]

Oh wow now I might have to stop buying clothes off eBay and get some of these...!

[Nettienoo]

Hi Implausible, I’m waving at your photo. My husband thinks I’ve lost the plot.......I probably have. 😂

[Implausible]

Aw thanks ladies.  I've already had it cut super short in preparation for the treatment, and I am lost without it!

Ally, I just use fairly cheap colour preserving shampoo - whatever is on offer in Tesco 🙂

And I never condition it.  I quite like it a bit fluffy and not desperately sleek.

Wig wise, I have been spoilt for choice, plenty of crazy wigs out there that suit my style.  People are used to me changing the colour of my hair every few weeks anyway, this way I can mix and match daily if I want to! 😄

I've already bought 2 wigs from this site, they arrived yesterday and are really nice quality given that they are pretty cheap:

https://www.lushwigs.com/category/wigs/bright/

[Ally2019]

I definitely agree xx 

[Ally2019]

I second that! Your hair is amazing 😍

What shampoo and conditioner do you use? Xx 

[Edinbird]

Wow your hair is amazing! I hope the cap works and I’d love to see the faces of the wig suppliers when they are asked to try and match that! Mine is super easy she just opened the book to it and I said yep, order that 😊 but whilst my hair is not remotely exciting I do have tonnes so keeping my fingers crossed it works for me too

[Implausible]

And all this nutrition stuff is SO confusing.

I looked into turmeric before but for every site saying it helps there is another saying you shouldn't take it during chemo

Same with ginger.  Some places saying it helps for nausea.  Others saying it stops the "proper" anti nausea meds working so avoid it

I wish there was one source of proper information

I can't believe for a second that nutrition is irrelevant in all this.

[Implausible]

Thanks Daffydilly.  That's great to know!  I would hate to be sitting there with my legs crossed for all that time! 😄

I also plan to cold cap if I can hack it the whole way through as I've read that even if your hair still comes out, it grows back better/stronger after as the follicles are less damaged, or something.  Oh well, it's worth a try:)

Worst bit for me will be not being able to bleach and colour it for a further 6 months.  My hair hasn't been anything close to a natural colour my whole adult life!  

Can we attach photos here?  If so, this is me:

[Ally2019]

Hi Sissy60, 

Thank you for sharing, I was also gobsmacked but I predicted that would be the response and you’re right about processed meats!

Please share any other nutritions 😉

Daily baby aspirin? Please elaborate 😁

[Stargazer1]

No way, I can’t believe that Sissy60, oh well I’ve been sorting flowers out all week 🙁 

I do know about raw foods though, as in seafood, shellfish & undercooked meat, runny eggs also blue cheese & un pasteurised cheeses, all my favourites 😂😘😘

[Sissy60]

So agree! I said similar to my oncologist and she said ‘food makes no difference’. Breast nurse nodded. I was gobsmacked tbh! They are currently developing a prostrate cancer treatment from broccoli! The chemo drugs come from botanicals! Taxanes developed from yew trees... So I said back...’the World health organization are wrong then when they say over 30% of cancers preventable due to diet and lifestyle? And why are they telling people to cut down on processed meats?’. She didn’t answer, but they are not taught it at medical school and now the student doctors are campaigning to get nutrition on curriculum. I’m going to be on the turmeric (enhances chemo for breast cancer) and vit d and fish oils... I did a nutrition course and it makes me mad that they don’t acknowledge diet as critical for recovery and keeping our ‘terrain’ hostile to cancer. It’s not the cure on its own but it’s crucial for staying well and exercise is called the second chemo it’s so protective against recurrence!!! Even docs know that! And a daily baby aspirin in trials is effective! My lovely GP shared that:)

[Daffydilly]

Hi Implausible,

Im from Dec thread and just had fourth chemo last Thurs. Have cold capped every time. Can go too the loo when you need to. Cap unplugs from the cooler( cap stays on) and drip/ pump is on a wheeled stand, so also unplugs and comes with you. Just knowing you can go when needed makes need less frequent I find!! Have still lost a lot of hair but no bald patches, just very thin at parting. Still use wig to go out but will persevere for last two sessions as nurses say it will grow back quicker and having some hair makes me feel better. Good luck.

[Ally2019]

Hi Implausible, 

I agree, as you would not have known. My Oncologist laughed when I told her about my supplements and eating healthier. She just said only chemotherapy can help, but research suggests differently. 

I am thankful for this group 🤗 xx

[Implausible]

I don't think it is that easy, though, to take the cold cap off....  I think they need to defrost it for a while first....  I wonder if you can wheel the whole thing into the loo with you?

[daisydi]

Hi Implausibe, they were my thoughts exactly about going to the loo whilst being attached to the cold cap but they must be able to unattach us for 5 mins?  I was also wondering about drinking iced water/sucking ice cubes to limit effect on mouth. I take turmeric and vit D and oncologist said they were fine to continue.

[Implausible]

Yes it really is confusing.  Lots of contradictory information floating around, and my doc and nurse have told me lots about potential side effects but have volunteered very little information on how to prevent/relieve them.

Pretty much all my nurse has told me to do, prep wise, is the dark nail varnish thing 

And she didn't say anything about stopping taking supplements until I just mentioned them offhand, at which point she looked quite horrified.  Surely if they are that bad they would have made more of a point of it....

[Edinbird]

I was using the Feeling Good app on prescription from my GP as I was down at the end of last year which you can pay for but equally if you google it you can find the passwords online to get extra tracks for free!

Didn’t use it loads in fairness as I then had a cold all Christmas and New Year but it helped with relaxing 

[Ally2019]

Hi Implausible, 

Thank you you for the information and making me smile. I think I would question it too ha ha. 

I feel it’s a shame that there isn’t a standard message that we are given by our nurses. I had to ask so many questions to mine. As I don’t want to counteract the chemotherapy, as I eat healthy and take supplements too xx 

[Ally2019]

Hi Rosina, 

Thank you xx 

[Rosina]

Hi Alli, yes there is a subscription. I took out the 3 year one. You can also share it on another 3 devices ( for free if you wish) . I have put it on my husbands phone as he liked the music tracks ( for relaxation, focus) I do my stretches to any piece of music that feels right. My current favourite is called ‘release ‘ there are also sleep stories for nodding off. 

I understand that there is a UK app called Hesdspace - Which may also be worth checking out. I went for Calm and have even used it in my class with the kids I taught as there are items specific to kids. They loved her too.

[Implausible]

Ally she said that they can cause an oversaturation of some of the ingredients that will not help the chemo.  

She was most insistent.  Even when I said that I have a tendency to anaemia at the best of times and i think the iron in the tablets helps.  

She then said that my bloods they took the other day were absolutely fine so I don't need the supplements.

I pointed out that maybe my bloods were fine because of the supplements 🙂

And she laughed, and (nicely) told me to stop arguing and do as I am told 🙂  so I've stopped taking them....

[Ally2019]

Good morning Rosina, 

How are you? 

Ive just looked in the App Store, is it the app with the subscription? X