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February 2021 Chemo Starters

Gelbel
Member

Re: February 2021 Chemo Starters

My hairdresser doesn't supply wigs though from day 1 when I told her (because I won't be going even when she reopens so felt she needed telling plus I knew I'd want to go short then cropped) asked to let her help me as she's had a few clients on chemo. Make up - what she told me is to go OTT on eye make-up and draw out your cheek bones. I've always used eyeliner but subtley with mid to dark browns or black on the odd occasion.

I googled what colour liner best for my eyes - blue for blue it seems. Got 2 different blue Avon Glimmerstick liners (twistable, no need to sharpen #genius) from Amazon et voila. Pencil thick underneath from tear duct to the outer corner and up a tiny bit, and close to upper lashes and upper waterline. Dap of highlighter (concealer or the pale colour in an eyeshadow palette works) in the nose side inner corners. Bit of colour on my very fair eyebrows. Bit of neutral eye shadow and lashings of mascara if I am going out. Wish I'd done this years ago! Looks fab even if I say so myself. Bizarrely she told me to stop my eyelash serum I'd been using that had just started to work. They're holding on. #TouchWood. 

Suck your cheeks in to add bronzer under the cheek bones and a bit up your temples to make your cheek bones standout. I use my Boots #7 recommended colour match so it's not orangey nor glittery. You can use the bronzer as eye shadow.

I hate foundation but caved in when grabbed by a Bare Minerals woman in Debenhams. What are we going to do without Debenhams? Me and a chum had a fab night at a Clinique event there a few years ago and learned a few tricks. I let Miss Bare Minerals put subtle make up on. Their powder is awesome. Hardly visible so I will use when I go out, helps eye make-up stay in place. I put some on the front of my head where my hair should be yesterday as it's so ridiculously pale.

All Googleable.

Going to try a green eye liner as I've a bit of green and grey in them too.

She also recommended pretty hair clips or bands/bows on your wigs or beanies and chunky earrings/necklaces. All to draw the eye from your hair. I don't the clips or bands as I never would in normal times.

Hope that helps @Kaz11. I don't claim to be an expert though a couple of pals have made lovely comments, including my bf who wouldn't hesitate to tell me otherwise!

I'm on Calcium and Vitamin D as I'm on Biphosphanates (osteoporosis drug that's nearing the end of a trial that's proving good at stopping bone secondaries in postmenopausal women). Lots of recommendations to take Vitamin D as everyone is short at the moment, lockdown adding to pants weather.

The weather's pant, why not grab a nice cup of tea, something nice to eat and have a make up play? You could do as a video call with a friend you've confided in whose style you admire? 💄

Good luck!

Love AnGELa x 

PS This before the wig was layered. It's cheeks and eyeliner only.
IMG_20210301_110747.jpg

 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi everyone,

Haven’t posted on here for a while as I’ve had a really difficult week and a half.

My last chemo cycle (2nd) was on the 4th and that was with my newly installed portacath. Halfway through it started really stinging and aching where the needle is sited. I told a nurse straight away but as I’d had trouble with sticky dressings before we thought it was that, she changed the dressing and got through the rest.

The next day I felt really duffed up and ill but thought it was the usual that you feel the day after, went to bed but hardly slept. By the morning I felt worse and I had a temperature of 38.7. Went to Meddoc at my local hospital and was prescribed some all encompassing antibiotics as I had a terrible sinus infection too, the smell up my nose was the worst ever!

I had to wait till the Monday morning to phone the chemo unit but they asked me to come straight up as they were worried. The area was red and hard and where the catheter went in my jugular there is a hard lump there too, and it’s achey. The same afternoon I went for a lineogram, this is a procedure where they inject contrast dye to see if it leaks into the surrounding tissue using X-ray at the same time. The Radiologist said the portacath is in place but the pain could be due to bruising but he doesn’t think it’s infected as no puss came out. Since then I’ve been up to the unit Wednesday and then Friday, I had an ultrasound then too.

All this is pretty exhausting on top of the week after chemo when you feel at your worst, just feel tbh shit, sorry but it’s true. I’ve got new antibiotics that are just for the skin as my sinus infection has eventually gone so I’m hoping that these help in case there is any infection as the senior clinical nurse said I can’t have the portacath out until I’m feeling healthier and the neutrophils in my blood are back up to where they should be. The whole incision area and up to the catheter point looks red and slightly mottled and bruised, and it’s very worrying.

Has anyone else had trouble with their portacath? 
The procedure in itself was traumatic as at one point they had to stop and give me more local anaesthetic as he did something that made me cry out in pain and I just couldn’t stop crying in pain, and that shouldn’t happen.

Sorry for my long self-indulgent post, I know we’re all going through such a lot and everyone has their own individual struggles but got enough strength to tell you guys all about everything as like other people say when your telling numerous different people your tales of woe it gets exhausting and I just tend to hide & shut down just to get through it.

On a brighter note I met a lady that works in the same building as me who I had no idea had been through two lots of BC and she’s such a lovely lady too, I had no idea so we’ve become friends on FB. 
It’s all about supporting each other isn’t it.🤗😁

Hope you all have as good a weekend as you can have! 

Alice xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Sorry should have said it is Vitamin D3 - good for your immune system and bones apparently.

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Good morning all

@Gelbel thanks so much for the tips re the wigs.  My own hairdresser who has been keeping in touch all the time unfortunately didn’t supply wigs but I used another local hairdresser recommended by someone who had been through the same thing in non covid times so she was able to go to the salon to try on.  The hairdresser did thin it at the time but think as you say it would be good to ask her to thin it down a bit further so it is not so full and more “me”.  I suppose it’s a bit of trial and error in these times as I can’t go to the salon.  Rules are so strict up here but that’s a whole other story!  Make up tips would also be good as I feel even with make up I still look quite pale.  My eyelids were also a bit puffy yesterday but think that’s from the serum I am using recommended by the hospital to try and preserve my eyelashes snd eyebrows.

 I am now on the shielding list which happened after I got my first vaccine.  Someone from the local council then came to my door to tell me about the benefits of shielding like getting preferential time slots for supermarket deliveries etc.  I thought this could have been done on the phone but have since been told by someone they come to your door to check you are in and not out and about!  Not sure if it’s someone scaremongering but tbh nothing would surprise me.  I am allowed out for exercise but only within my local area.  Can meet a friend for thid thankfully.  As I think I said yesterday we can now meet people from another household in our gardens but right now I don’t want to add pneumonia into the mix!

Re vitamins I asked at the hospital if I should be taking vitamin D as we don’t get a lot of sun up here in Scotland.  They said I should and they checked with the oncologist who said it would be ok.  Have not started yet but have ordered online so hopefully I will have them before Thursday’s appointment and can take them with me to let them see I have the correct dose before I start.

Thanks again for the tips.

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Gelbel  Thank you... you have a lovely weekend too x

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 while it's late for today, will your hairdresser trim your wig? Mine layered one of mine and I need my 2nd one to have a tidy as the fringe is too long. My hairdresser is wonderful, been catching up with her clients via text etc. so I asked her to come over to do the honours. In England she can - it's providing care to the clinically extremely vulnerable. Worth asking yours? She was wonderful with make-up advice too.

Don't worry about what people see, if anyone asks tell them your camera/screens a bit pants. Turn the brightness down. I've had different hair on calls with the same group of people who don't know, no one's batted an eyelid. Well certainly not to my face. I've hardy told anyone so I'm with you on that limited circle knowing. Can you add a background? That will blur your edges a bit and helps. I can help you with Teams but have no idea with Zoom, of course you can't with FB messenger.

Glad to hear you've got meds sorted @LottieLaing 

@Teagold I'm not taking vitamins. I said I pop the occasional one and was told not to. Can your boss give you non-time critical work? Mine's taken all my work off me and asks me to do little projects when I do work. Or I say I'll do x, y or z of my usual work that the rest of the team has divvid up between them. That way you are not worrying about work not being done when you need time off. 

Enjoy the weekend everyone, if not the weather. 

Love AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Hi everyone,

Carole and Linda, just as the other lovely ladies have said - so sorry that you have to join us but being part of this club is making going through this so much better than it would otherwise be - and I have to say that invariably the posts on this forum make me laugh out loud.

How’s everyone doing? Sam you look amazing in that photo! You are rocking that look - gorgeous. How are you doing so far after cycle 2? Fingers crossed for you for a smoother ride.

I had my 4th paclitaxel today with a carboplatin chaser - yum. All ok just feel very spaced and trippy (as I said to my oncologist - please don’t think I know what a trip is like of course!). My daughter sent a list of questions for him as she has been studying cancer treatments in her science gcse course (yep, nice timing for her poor thing but actually perhaps seems to be finding it useful). Bless him he took time to answer them all thoroughly and said to tell her they were v good questions so she’s feeling great about that. 

So I’m also joining the hair loss gang now for sure - big handfuls every time I brush or wash or anything. The cold cap definitely felt colder today. The nurse did warn me it would be this week but the doc seemed surprised and said it’s unusual with paclitaxel to see it start so early. I’ve got some scalp cooling booster products so I’m going to keep going with the cap and products and just see what happens. I’ve got one wig arriving tomorrow that I can try on and return if wrong, so I definitely feel better for starting that process.

Bit unsure about work still - my boss called yesterday and we chatted about maybe getting involved in a few projects again - they’ve been brilliant so far and I really appreciate the flexibility. I know that things are going to get worse before they get better given my treatment plan and I don’t want to commit to anything I can’t keep then let them down, but now that kids and hubby back at work I think doing something might be good as a distraction. I can see that many of you have kept working far more than I have, so it’s really helpful to hear how it’s going for you.

@Gelbel congrats on the car, sounds fab!! The treats thing is a great idea. I’d so love to treat myself to something like a massage at the end of each step, I’m guessing we can still do that kind of thing and perhaps by the time I finish chemo all the salons will be open again?

Oh by the way - is anyone taking supplements/vitamins etc? I meant to ask dietician but haven’t seen her today.

Ok well clearly I’ve got steroid insomnia buzz and sorry for the long rambly chemo-fuelled post but big hugs to you all and hope everyone has a good night and a relaxing weekend.

tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Way to go Sam you look fantastic.  Well done you.  I have only worn my wig for around an hour but did some Facetimes with friends while I had it on and they all thought it looked great.  I think they were just being kind.  The colour match is good but I think it still looks a bit full compared to my very fine hair (at least that was how it was pre chemo).  Feel like I am now stepping nearer to the Sinead O’Connor look every day.  Washed it on Wednesday and more came out so now very thin on the top.  Not sure if the cold cap has done much for me but didn’t think after using it that I would still lose so much.  When I go for EC 3 on Thursday I’ll need to ask the nurses’ advice on whether or not I should continue with it.  Was certainly colder the last time as there was less hair for it to make contact with.  Pretty disappointed as had high hopes when a friend who had been through it showed me before and after pics and she had kept 70% of her hair.  I wouldn’t have known she had lost any.  I feel like I have lost 70%.  Someone told me that Paclitaxel doesn’t cause hair loss but it’s 3 weeks after next week’s last EC before that starts so can’t see there being much left by then.  

My wig is getting it’s first public outing tomorrow night on zoom.  I am in my local operatic society and we are having a quiz night to raise money for the local hospice as this would have been our show week in non covid times.  Thinking of tying it back so it looks more natural but worried about people noticing it’s different as I have not told most of the members about my diagnosis.  I have kept the information to a limited group as can’t bear all the questions.  Not everybody’s approach but it’s mine as I just don’t want a lot of people knowing.  

We recorded a short montage of songs a few weeks ago which was posted on Facebook today.  I recorded mine the week pre chemo so although it was nice to see it today it was hard as I had all my hair then and looked like me.  What a difference a few weeks makes!  Now look so different and it will be a long long time before I can have shoulder length hair again.  Makes me so sad.  The hair thing has been a massive blow for me.  Watched the Victoria Derbyshire vids last night and she was the same.  It’s so rubbish isn’t it going through this!

Anyway @Gelbel that’s fab getting a new car.  That is a treat indeed.  Well deserved though considering what you and the rest of us are all going through.  Wishing you many happy miles travelling in it.  Think of all the places you can go when we are out of this pandemic and we are lockdown and hopefully cancer free too.

We are now allowed to have 4 people meeting up from 2 households which is totally impractical as it’s still freezing outside.

Anyway take care everyone and enjoy the weekend as much as you can.

Kaz11 x

LottieLaing
Member

Re: February 2021 Chemo Starters

Gosh Sam what a lovely positive lady you are ... who likes a laugh too... my next chemo is on Friday... I didn’t suffer too much with 1st one ... nausea... headaches... horrendous acid reflux and blurry vision and really dry eyes at times. But I got meds for acid reflux and bought eye drops that help. 
I’ve struggled with anxiety earlier today though and felt sick so nurse told me to take an anti sickness tablet and that’s helped with both. Have been out walking twice today with dogs too xx

Gelbel
Member

Re: February 2021 Chemo Starters

Twit-woo, you look amazing Sam. 👍

I wore mine out for the first time today. Checkout lady at Wilko said my hair's amazing. I then met my bf at a motorway services for a coffee. Socially distanced car to car, she was fill of praise and can't believe how well I look.

Must admit, I wear slap most days as a distraction. I've probably less than 10% of my own hair now.

I've managed the mother of chemo treats - a new car! Out of the blue. I lease mine and was called with an amazing, couldn't refuse deal. I was starting to look around as my current car's lease is up at the end of the year. Got what I wanted at an internet price from my dealer. Happy days. Should get it by the end of the month.

Good news that you finally got all your meds sorted. Let's hope cycle 2 side effects are kinder. 🤞

I'm going to ask if my steroids can be reduced as I was still coming down in the week. Industrial strength indigestion tablets will be requested too. My appointment/bloods are Tuesday.

Wednesday it's prosthetic fitting day. 👊 So ready for it now.

Right, I need a cuppa. Blooming M62 on a Friday afternoon lived up to its reputation - 2 hours to do 35 miles. So glad I had a just in case loo trip before I left.😅

I hope you all have a wonderful, comfortable, side effect free as possible weekend. 🤗

Love AnGELa x 

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning all my lovely ladies and hello to @carole_balmedie and @LottieLaing ....as has been said before sorry you find yourselves here, but this is a lovely, informative, supportive and friendly bunch.

So cycle 2 yesterday and all went OK despite the fact that I missed my onco consult on Tuesday.  Long story short but my phone was having signal drop out so ended up getting voicemail from him saying trust everything went Ok and will just go ahead as planned for Thursday!!  However as you may know, I was bloody rough for the first 12-14 days and desperately wanted to speak to him re my variety of side effects and the fact I'd had to call the rapid response line around 7 times during these 2 weeks.  Managed to speak to my BCN on Weds to let her know all my woes so she updated my notes and looks like message got through as they'd reduced my carboplatin dose by 10%.  Also manage to get the full compliment of additional top up meds from the chemo unit to get me through cycle 2's possible SEs.

Have now actually got a F2F with my onco prior to cycle 3 on 1 April so at least I do get to see him to go through everything from first 2 cycles.  

Did have a bit of a laugh though as first they said I'd be on the filgrastim this time around, then I wouldn't, then I would...eventually worked out that my neutrophils were within limits so NO FILGRASTIM yay!! Apparently at least my bloods are good! Happy bunny about that 😁

Feeling a tad steroid spacy today and crap night of non-sleep but managed another hour on sofa this morning with my cuddle cat.  Trying to see if I can use something like Nytol which is antihistamine based so pretty much same as my other antihistamines for my allergies (but Nytol is the sleep inducing one!)  Yet again another call to the onco to double check...hey ho x  Not sure if I can have the melatonin but worth the ask...also been advised that Phenergan could also be another option to try too....so will have to wait and see until next Tues.

Have also now sorted out my NHS wig voucher so got a consult shortly to have a try on session...actually in the salon so that's fab news.  Just deciding on styles/colours and they can order me 3 in to try out without obligation.  However I'd forgotten I'd already ordered a cheapo wig of the net for £14 and it arrived this morning and, actually, it's not too bad and a fairly similar style/colour to how my hair was at Xmas.  So fairly chuffed about that and has been on my head for last hour and half and seems to be quite comfy too!  So if you are thinking about going the wig route.....I'd say go for it, what have you got to loose and always good to try out some new looks too, although I've gone for boring normal....for now anyway lol x

Wig try outWig try out

Definitely not risking getting the dodgy 70's bubble perm...which my 78 yr old mother still has despite me trying to talk her out of it each time lol 🙂  But also love the idea of going 'Supermodel' look...but may go retro al la Marilyn Monroe....may work or may not but worth a giggle at least 😂  May also look a bit better with a bit of slap on as forgot I hadn't got any on this morning when I took the photo....so looking a bit rough on day 1 after cycle 2!  Oopsie lol

Glad to see you all seem to be liking my presents to self idea after each treatment....think I've set a new trend lol 🙂  Decided my rads pressie is to get some nice make up ready for Xmas (sparkly tops may also be involved!) 😁

Hope you are all doing OK after your next cycles and good luck if yours is coming up later this week or next.  So I'm at least 1/3rd through now (2/6 done!)  Keep counting the days down and it gets closer and closer to the end of this crappy bit.

So nap time calling again and hope you all have as good a day as you can xx

Love

Sam xx

carole_balmedie
Member

Re: February 2021 Chemo Starters

Thank you @ktruffin & @Gelbel for the welcome! 

interesting to hear you both are on steroids, I only had iv steroids on day of chemo & don’t seem to have any side effects that you are experiencing 🤞🏻

I now have my wig (NHS prescription) already to go, pretty close to my own hair colour & style, time will tell if everyone else thinks the same 😉 Heather, my wig lady (as she comes up on my phone 😂) has been amazing and it broke my heart to hear in the 1st lockdown that she wasn’t allowed to do the remote service that she has done this time.

Enjoy your time off Angela

xx 

LottieLaing
Member

Re: February 2021 Chemo Starters

Thanks Angela ☺️

Gelbel
Member

Re: February 2021 Chemo Starters

Rather pleased to report that 'toilet' troubles either way has not been a problem for me. #ThankGoodnessForSmallMercies

ktruffin
Member

Re: February 2021 Chemo Starters

I am on Docetaxel first (due to a cock up with my Dpd deficiency check) means I am not in the EC club.. I got swapped around.

I got my dose of Docetaxel reduced and steroids spread out for longer because I had a pretty bad reaction last time on days 7-10 when I came off all the hospital take home meds.

basically my liver reacted badly, temperature went up (to a shocking 37.7 - a level I would send kids to school at 😂) and I had 48 hours of aches, skin numbness and diahhorea. I think they were happy to adjust steroids because of this, but frankly my view is layout your side effects on your pre-chemo oncologist call and see what they say. You can but ask in good time for them to get an accurate message to the pharmacy team.

But time will tell - I felt good on day 5 last time so have tough days to come yet.

Tummy stuff- ?? What’s occurring?? I personally find a few good homemade smoothies and porridge help hugely tolerate the steroids. Adding Linseed/Flaxseed and/or chia seeds - also dried fruit - apricots/ figs/ prunes when on steroids kept me regular pleasantly- and reduced bottom burn.

The indignities of these treatments! If we didn’t laugh we’d sob

Gelbel
Member

Re: February 2021 Chemo Starters

Welcome Carole and Linda to the club no one wants to be in. Even more horrible when you'd new life plans within your grasp.

Now while the club's in the wrong end of town, the members are top notch. You couldn't wish to mix with nicer people.

Seems to be quite a few of us February starters on 3 x EC to start with - obviously the chemo of the month. 😆

@ktruffin interesting to know they adjusted your steroids. It's those that are doing for me. How did you manage that? What did you explain to them? Sorry to ask, I'd so like mine to be reduced, the whooziness has dragged on this time and I know my (oh-going) tummy dull ache is thanks to them. Though I didn't have that with cycle 1. Feel a right old discussion happening on Tuesday.

This weather's enough to bring us down. Hey ho! For me, it's a bit of work tomorrow then with a combo of annual and sick leave, I'm not working 'til after Easter! 🐇🐥

Hope everyone is as well as they can be.

Take care of yourselves. 🤗

Love AnGELa x

ktruffin
Member

Re: February 2021 Chemo Starters

Welcome Carole

Also angry at this damn cancer. Was just at the stage of getting my kids off to secondary school and relaunching me and a new direction as an upholsterer and whammo - f****** BC

Well done on kick starting wigs - I am finding the cold cap tolerable with the aid of meditation, paracetamol and heated pad but my hair is now coming out in big style. Just called a pal who has been there who is also a red head to see if she will drop by here wig and some hats. Going to persevere with cap as had heard it helps with regrowth.

Newest side effect is losing my fingertips - really dry skin - peeling loads and wrecking my ability to use TouchID - god first world problem!!!! But seriously as someone who uses fine motor skills to work i am a bit scared about peripheral neuropathy which can be a risk on DoceTaxel.

Definitely keep working and distracted - and keep telling them if you get side effects -they have adjusted my dose and steroids and this cycle has gone tons tons better so far

 

Cheers

K xx

carole_balmedie
Member

Re: February 2021 Chemo Starters

(Apologies, have posted this again so it comes up in this group)
 

Hi to all in the Feb21Chemo starters 🙂 I was diagnosed with HER +ve BC on 12th Feb and came out of appointment pretty pissed off and angry, this wasn’t supposed to happen in the year I retire, not on my agenda at all 🤬

This is my first post on the forum after reading all your comments over the last week or so. I started my first of 3 EC on the 25th, now day 13 already. The first few days for me were the worst, very tired and nauseated but religiously took my anti sickness tablets till about day 6. Appetite went out the window, but oh me back with a vengeance just now! 

The Filgastrim injections were ok, no major side effects except for some spasms of pain at my lower back going through to my lower tummy, lasted a couple of days.

I managed to tolerate the cold cap so keeping fingers crossed.......started the hunt for a wig....not easy in lock down but have a lovely lady who is sending me them to try, think I’ve found one but need a fringe cut into it, getting this done soon, just in case my hair starts falling out 😏

I’m trying to keep as normal a routine as I can when I’m feeling good, worked from home for 1st week but have been back full time this week and feeling ok, even managed a long walk on Saturday. I’m embracing this while I still can function at nearly 100% because I know it is more than likely to get worse as each cycle come on board.

2nd EC on 18th, so hope to continue my journey chatting to you all and sharing experiences and support xx

ktruffin
Member

Re: February 2021 Chemo Starters

I may have to start looking at wigs... been in denial - maybe that’s my TO DO. 
Go team

k xx

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi my names Linda and I started chemo on 26th Feb ... I’m on EC for 3 cycles... then it changes to a different lot if all going well. 
First chemo wasn’t as bad as I had imagined... I had bad nausea... headaches.. horrendous acid reflux and just really tired. But every day there is a new wee niggle somewhere in the body. It’s all so new and quite scary ... I’ve had quite an anxious day today unfortunately. X

Gelbel
Member

Re: February 2021 Chemo Starters

@Teagold - glad to hear you're sorting a wig/s. I found it somewhat empowering taking control.

@ktruffin my aunt volunteers at Penny Brohn, I think she answers the phone and does adminy stuff.

I'm hoping the various hands on therapies for patients will be available in April when salons etc are open. So want to indulge in those. Quite fancy a make-up class too - seems my Trust's charity give away some fab goodie bags.

I've been working this week. Absolutely whacked - but brain whacked, not physically. Chemo brain probably adding to it. I fell asleep on the sofa for an hour last night then did 8 hours solid when I went to bed. Only got tomorrow and a few hours Thursday to do for the rest of this week. I'm not over-doing it, it's lovely to be productive.

Still aware of my tummy this time round. I have been eating rubbish though and not drinking quite so much - still more than the 'normal' recommendation.

I hope you are all not doing too badly after your recent cycles and that you are as comfortable as you can be. 🤗

Love AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Hello everyone

Rainbow how are you feeling after yesterday? Hope so far all has gone as smoothly as possible.

@ktruffin yes I am going to follow this up, I’ve still got one of my girls at home today but she’s back to school tomorrow which gives me a quiet house to make the necessary calls (I don’t want her to walk in or overhear when I’m talking about it just in case it worries her). 

Hair shedding is increasing so I’ve made a couple of calls about wigs this morning, that actually made me feel better - doing something positive about it. 

I found the V Derbyshire videos really helpful, haven’t watched them all so might take a look at a few more today/tomorrow. Also has anyone looked at Breast Cancer Haven? Lots of online classes, I’ve tried Pilates, meditation and yoga so far - the yoga yesterday was very relaxing. 

Hope everyone is doing ok, big hugs

tg xxx 

ktruffin
Member

Re: February 2021 Chemo Starters

@Teagold 

Don’t hesitate to get some counselling. Try Penny Brohn - think they offer some great free 121 sessions. You need support and whirring on here will only take you so far. You have specific concerns and we are all on slightly different paths / prognosis.

Kids back is good in some ways but more time to think isn’t! Please let us know you’ve put this top of your TO DO LIST today. Remember the mind-body connection - you need your mind to help heal your body.

Sending bossy love and off to get the hoover out AGAIN

K XX

ktruffin
Member

Re: February 2021 Chemo Starters

I have friends who are / have been through this so I lean on them. I have used the Breast Cancer Now hotline many times as it’s tough to get through to my treatment team and it’s staffed by really practical and warm chemo nurses with loads of easy tips on side effect care. Yesterday was not so good though as she was obviously trying to manage my over optimistic view on hair regrowth on Docetaxel. 

On a blue day check out Penny Brohn - they are a Bristol based cancer charity set up to train medical staff and support survivors  - all free drop in sessions and information around complimentary therapies and nutrition and movement - all designed to help tolerate and recovery - including bookable 121 sessions - tipped me off to use Polybalm which is helping my fingernails / fingertips which were getting grim.

I was being very solid till yesterday then just crashed a bit - inevitable- I hope my cancer has all been chopped out and my chemo and radio are just “belt-and-braces” but side effects that just keep varying and coming every day are exhausting this very “low-maintenance” gal. Never had so many lotions!

Sleep - get melatonin - it’s a supplement from a company called Biovea - it’s the hormone your body releases as you drift to sleep so it’s a natural sleep supplement.

Useful for use to reset body clock and deal with the menopause stuff.

Power to everyone - we will get through this 

 

k xx

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

Hope your EC cycle went ok Rainbow.  Totally understandable that you should feel emotional ahead of it.  I have certainly felt awful the week post treatment then start to feel more like me and then you have to psyche yourself up for the next cycle.  My sleep isn’t great at the moment anyway as I now have all the menopausal symptoms thrown into the mix just to add insult to injury but I struggle particularly the night before my treatment so totally get where you are coming from.  Big hugs on their way to you.

I have not looked at the Victoria Derbyshire videos but plan to.  

Not sure if you have heard of the Someone Like Me service which Breast Cancer Now offers.  Someone local to me who had been through breast cancer recommended it to me.  Basically they take all the info about your disgnosis, treatment etc and match you up with a volunteer who has been through the same process as you and they call you to chat and offer support.  I have had 2 calls now with a lovely lady who just gets everything from my perspective as she has been there too.  I have found that support and this forum the most beneficial to me.  Friends are very supportive but as none of them have experienced this first hand they don’t get it.  Was so upset when one said at the weekend that my hair was probably not as bad as I thought (believe me it is - still shedding) as if I was exaggerating.  Very hurtful.  Anyway I just filled in some details on the website and had a call from someone who talked through some details and within a few days I had a Someone Like Me match.  Might not suit everyone but I have found it very helpful.

Love n hugs to everyone Kaz 11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

hope you are all doing okay and those who  had treatment last week are ok too . Linda sorry to hear your treatment was deferred I hope you will soon be back on track ❤️

just catching up on all the posts over the weekend  which really help as felt bit tearful over the weekend . Think it’s been mainly due to  the build up to 2nd cycle today and hair loss  has increase over the weekend. 

consultant has prescribed me a different anti sickness tablet to try today and next two days so hopefully that should help and prevent what happened last time . 

Still going to try he cold cap again this afternoon. I have watched the Victoria Derbyshire videos and also read her book - has anybody else ? 

Heat pad sounds good idea for chemo and also the hand vac purchase . Love the idea of buying a gift too after each cycle , will start that this week🤣

70s bubble perm made me chuckle  ..I’m sure  mines going to grow back like nurse crane off call the midwife 🤣

Sending love to you all xx🌈

 

 

ktruffin
Member

Re: February 2021 Chemo Starters

Big other recommendation would be to buy an electric heat pad - I got one off Amazon Maxcare for £22 - so worth it - plugs in behind my seat at hospital and is so comforting - plus Yoga Nidra Network- very comforting 

good luck 

 

Shi
Community Champion
Community Champion

Re: February 2021 Chemo Starters

Mini straighteners sort out chemo curl then when it’s long enough your normal straighteners sort it out 👍 it can look like it’s growing back straight then goes curly whirly whirly and if you’ve always had straight hair it’s a bit what do I do with it, but you will just be so pleased to have hair back it won’t bother you too much and you can try different things as it grows 😁 💕💕Shi xx

Gelbel
Member

Re: February 2021 Chemo Starters

@Teagold a Eufy handheld will be arriving today. Dirt cheap, great reviews, USB charged but #1 is that it's the brand of my robot vac so I know it'll be good. I couldn't justify spending more as we have Robert The Spruce and a Dyson stick, which is pants at getting hair off my cloth office chair. I can keep this new one in my office - so handy for sandwich/biscuits crumbs and goodness knows what in my keyboard. 😟

I was told EC is cruel on the hair and it starts coming out from day 14-21, guaranteed. Cue day 15 for me with ramping up to cycle 2 day 3. It's slowed a bit this week - probably because there's not too much to come out at the back now. The top's holding on. I'll not hold my breath for it.

Seriously think I should've called my team in the week re the bad indigestion and got some tablets for it. Hey ho, it's on the list for next time. Rennies and lots and often eating helps. Hubby says I sound like a field of sheep baaing when I burp. 🐑 Lovely!

Kaz11
Member

Re: February 2021 Chemo Starters

Hi Angela

Thank you re the birthday wishes.

You’ve given me the best laugh in ages!  Hadn’t thought about the dreaded 70’s bubble perm style coming back.  My hair has always been poker straight so not sure how I would feel about it coming back in curly or wavy!

Great shout re making the Christmas appointment with the hairdresser.  Mine has been so supportive and is always in touch anyway.  I could be her first Christmas appointment in the book!

You are ahead of me thinking about the side effects of the prosecco bubbles - hadn’t even crossed my mind which it should have considering I am getting indigestion big time!  As you say best stick with the gin - every cloud and all that!

My plastic surgeon wants to do corrective surgery on my good side to reduce the size so it matches my reconstructed side.  Am not keen to get surgery that I don’t feel I need.  Would be 6 months after treatment ends anyway but for now am not keen.  Will need to get an op to remove the port from my implant anyway but right now that’s more than enough for me.  Will stick with 1.5 boobs for now.  Also don’t know if anyone else has an expander implant but mine always feels heavy post treatment.  Maybe it’s linked to the muscle aches caused by the injections.

Happy days!

Kaz11 x

Teagold
Member

Re: February 2021 Chemo Starters

Oh dear Alice/Linda I got you mixed up here I’m so so sorry - chemo brain!  X 

Teagold
Member

Re: February 2021 Chemo Starters

Aw Kaz big hugs to you - I know exactly what you mean about the birthday thing. Mine was last Tuesday and in all honesty I wanted to put the cards I got from some people straight in the bin. The best one was from a good friend who crossed out “Happy” and replaced it with “Crappy”. That just about summed it up. Love your idea about a prosecco portocath - genius! I hope you get a better night tonight.

Alice I’m really sorry to hear about your treatment delay and the hematoma. When will you know more? Any added anxiety is the last thing we all need so I feel for you. I hope they can resolve it quickly so you can get back to the plan.

I found all the posts over last few days really really helpful, I guess we are all at the same stage. I’m starting to notice more head hair shedding these past couple of days and the nurse yesterday said it will start to ramp up next week. I’d been sort of led to believe (or maybe wanted to believe) that it wouldn’t be too bad whilst I was on weekly paclitaxel but would get worse once I start EC further down the line so I thought I’d have a few more weeks but the thinning is definitely in progress now. I’m sticking with the cold cap, I haven’t found it too bothersome yet in all honestly, but I’m also going to start investigating wigs next week. 
@Linda1967 I've also been through a weepy patch in the last few days, I think everything had been catching up with me as from diagnosis to treatment was so fast - it’s only four weeks since I found out I have cancer abs I’m three cycles in now. Also the triple negative thing has been playing more on my mind. As my oncologist and BCN keep saying “it is what it is”, but I just wish it wasn’t!!! My BCN has offered to refer me for some counselling which I think might help as otherwise I’ll just download everything to my hubby and that might not be helpful for him as he has everything else to worry about. 
Sam I’m really glad to hear you’ve had some better days and been able to do a bit of work. I’ve got a bit to do next week which I think will be good for me especially as the kids and hubby (a teacher) will be back at school so I’ll be on my own at home for the first time since diagnosis. But I’m actually not too worried about that, I think I’ll be ok. Or be posting here six times a day!

hope everyone is feeling ok this morning and big hugs all round

tg xxx 

Ps @Gelbel @the handheld vac is brilliant, I got a Gtech, not the cheapest but cheaper than a Dyson and it does the job. Brilliant for zapping stray hairs and anything else for that matter - especially the millions of Rice Krispies that accumulate every morning. I wish somebody could invent one for breast tumours - just point it at the boob, zap all those cancer cells clean away...

Gelbel
Member

Re: February 2021 Chemo Starters

Belated birthday greetings @Kaz11. You might get away with a gin infusion in your port - I fear the prosecco bubbles might cause problems!

Don't hold your breathe though... my surgeon wouldn't even do a bit of side boobage lippo with my mx and ANC. Totally let the sisterhood down I can tell you.

Oh yes, that neon sign of a not so innocent beanie. It's the one thing I can't abide about all this. It's taking something out of our control isn't it?

Next time my hairdresser sends me a little how ya doing message,  I'm going to book my first post-chemo bleach/tone and Christmas appointment. I'm hoping to come back white so I can shove a different tone on every couple of weeks. My mum's white and so was my gran. 🤞 Better not come back 70s bubble perm like it was when I was a child/teenager.

I'm off to hoover the bathroom again... before I shed more from showering.

Have comfy, warm, well weekends everyone. 🤗

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Good morning everyone 

I take such inspiration from reading everyone’s messages it lifts me so much after a rubbish week.

I took last injection of this cycle yesterday (yay!) so hoping that I pick up from today which was the pattern last time round.  Felt shaky yesterday and during the night my body felt like it was working overtime (maybe it is to produce the neutrophils) then about 4am it settled which was the same last time.

 I am also shedding hair big time.  Was so hopeful in the early days until I washed it ahead of cycle 2 and then it matted and I had to cut a piece off which was awful.  My hair is very fine so not holding out much hope of retaining a lot now.  More out when I washed it on Wednesday.  The texture has completely changed and it had really thinned on the top so can now see my scalp very clearly.  Weirdly the length at the bottom has stayed albeit thinner and now goes into ringlets!  I should probably cut it off but trying to keep what is left for as long as possible.  The dreaded beanies/turbans now having to be used so feel like I now have a massive neon arrow pointing at my head saying “guess what I have cancer and am going through chemo”.  Trying to tell myself that because of texture change it is not really good hair which is left anyway but sometimes that works and sometimes not.  I have selected a short style for Christmas as figure that if my chemo sessions go to plan timing wise I will be finished early June which will give 6 months growth before Christmas.  Have selected a Linda Evangelista style from a George Michael video - figured if I am going to take inspiration may as well do so from one of the original supermodels!  I have heard that your hair can grow back thicker and a different colour so maybe mine will grow back and I will be a blond bombshell! I live in hope (natural colour pre grey was brown but was dyed dark blonde/mid brown when I started going grey).  Weird thing at the moment is that I am actually shedding some black hair mixed in with the grey.  All in all I look an absolute sight tbh.  Scalp is also a bit sensitive at times so get that.

Loving the idea of buying yourself gifts at each stage.  That will defo be me going forward.  Have not worn perfume and also using non perfumed shower gel and body lotion as my smell now so sensitive to the slightest thing which can turn my stomach.  Really struggling with the smell of a lot of flowers.  Also a Rice Krispie bar which I used to eat tons off just tasted way too sweet.  Don’t want to turn against my favourite perfumes so will use them again when treatment over.  Will also have ceremonial burning/chopping up of my chemo clothes which I wear to hospital and will never want to see again.  Thinking though of asking them to leave portacath in post treatment and see if it can be connected up to a prosecco drip for a few months instead but maybe that is a step too far!

Had my birthday the other day which was a challenge in lockdown especially with all the “have a lovely day” messages from people who know what I am going through and it coincided with my bad week post treatment so with the best will in the world it was not going to be a great day.  I felt some of the comments were quite insensitive to be honest but maybe that’s just me but I know if the shoe was on the other foot I would choose my words carefully. I totally admired the honesty of my cousin who wished me many happy returns but acknowledged it would probably be a crap birthday and we will make up for it hopefully by summer if we are allowed out up here.

Anyway I hope everyone has as good a weekend as they can.  Going to get the hoover out to pick up the hair which seems to be everywhere!

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi Alice, it goes feel like someone is tugging my hair out at times. So a yes to the aching. So pleased to hear you are feeling better today.

My stock answer if I can't be bothered to let people know how I am is bearing up. Especially useful for people who don't know who always ask how are you? Or say hope you are well. I'm not using those ever again because you never know.

Right, time to shake a leg now the cricket's finished for the day.

Linda1967
Member

Re: February 2021 Chemo Starters

Thanks so much for your kind wishes @Leftygurl. I hope your second cycle went ok and that you’re not suffering too terribly with the side effects. When I got there yesterday they postponed my chemo until Monday because my oncologist thinks I have a hematoma in my breast because of all the poking and prodding of the MRI guided biopsies. fingers crossed that’s all it is - finding another lump was rather scary. If all ok chemo on Monday. Off for ultrasound on the breast today.

Sending strength and positivity to everyone.

Linda x

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi all,

Had my 2nd chemo cycle yesterday after a sleepless night which was the worst!

Felt sick and very emotional walking to the car park to meet hubby but got my head down for a couple of hours when I got home and with the help of two co-codamol got a good nights sleep, if I do use it it’s usually only one but I was sick when I was brushing my teeth. 
I do feel better today.
Jobs for today 

Psych myself up to rinse my hair of the conditioner from the cold cap as a couple of days before yesterday I was shedding like mad, long hairs and the shorter finer hair underneath as I slept in a buff, I’m so not looking forward to it! I didn’t have the strongest hair before I cold capped so don’t feel very confident that I will keep any hair. 😣 Hubbie says just leave it for as long as possible but I feel so yucky and I look like a Russian peasant woman lol 😆 

Has anyone experienced any aching of their scalp when laying down especially on the back of their head? This has been the main reason why I’ve had difficulty sleeping, the nurses looked at my scalp and there was no redness and they couldn’t explain it really. It feels like in water that the roots are aching when they swish in the water!

Sorry to sound so negative today, I’m usually the type of person who’s really positive and finds humour in everything, I try to say positive stuff to anyone else that texts or rings as I don’t want them to worry, stupid eh? But feel like I can vent to you guys, been weeping more than usual and it does make me feel better, and saying to myself, I’m a quarter of the way through and soon it will be half.
Great idea about thinking about little pressies to yourself to look forward to, I’m going to do that, definitely.

Sending hugs and love to you all

Alice x

 

Gelbel
Member

Re: February 2021 Chemo Starters

Treatment present goals, loving your style Sam. Delighted it's been a good week for you.

I have got my hubby thinking about where to go for a break between chemo and rads. Should be in early June. Little caravan on the coast a few hours away max. And I know the perfect spot! Or, this is cunning, my brother lives on the coast, if he's able to go away at half term, chill out at his for a week!

Though my biggest thing to look forward to is actual live rugby, from the middle of May. Hopefully. 🙏 

I've added blooming awful indigestion to my list of side effects for my next cycle pre-appointment. Can't think why I missed it and, worst still, forgot about it last time. 

@Teagold I'm so with you on the handheld. I'm still umming and ahhing about getting one. Might have another look.

Glorious day up here, if a little cold. I hope you enjoy your day. And weekend when it comes. Hopefully I'll be me tomorrow so can get out for a little walk, erm exercise, with a pal.

Love AnGELa x

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello everyone - hope treatment being kind to you all this week 

Well I've had quite a good week this week.  Managed 4 mornings of WFH but just doing mindless electronic filing and moving database docs to another platform and renaming all the folders.  Does help in keeping my brain busy and is definitely a good distraction.  But once I knock off at around 1pm, it's nap time....and normally have my daughter's moggie (Zephyr) cuddling up with me...as soon as the blanket comes out, she's getting herself settled in for a couple of hours lol 😄

Looks like this weekend the clippers will be coming out.  Started shedding big time and currently psyching myself up to get in the shower to see how much more comes out today.  So have been practicing tying up head scarves and first attempt didn't look to bad at all.  I still look weird in a beanie though....I've got a really oddly shaped head lol 🙂

Sense of smell still seems to be ok...but I too am avoiding using my favourite perfume and have started using unscented/uncoloured toiletries.  Hubster was under instructions not to buy me any more of my usual Coco Mademoiselle so once chemo is done, he's under orders to get me a damn big bottle of the stuff to make up for Christmas, Valentines and my birthday (which hopefully coincides with the end of my chemo in early June). 

Also been looking at presents to myself for the end of each treatment - so perfume after chemo, then new handbag/purse after surgery, then something else (to be decided) after rads.  Finally, have prepped the hubster with the item of jewellery I'd like once I finish active treatment next February!!  

I also hit up his credit card last week as I've lost around half a stone so all my jeans are literally falling off me....found some bargains on the Debenhams sale so got several new blouses/tops, new Spring dress and a few pairs of jeans/trousers (may or may not have also snuck in a new Chanel lip gloss...ooopsie lol).  But even though I ordered a size smaller, some of the jeans still need to be held up with a belt.  So it's kind of a good boost as I can likely go another size down which is fab news for me as I've always struggled with my weight (mainly as I've been on steroid inhalers for last 30 years!).  So 2 sizes down this year already...bonus 🙂

Starting now though to worry about cycle 2 next Thursday particularly as I was so rough for 2 weeks after cycle 1.  Also hoping I can still avoid the filgrastim injections as my levels were OK for cycle 1, so fingers well and truly crossed for that!  Oh well I'll just had to keep taking the meds I suppose....but there are soooo many now...and yes, definitely rattling for first week or so.  But I do think my left lump is shrinking...don't know about the right one as this is well and truly hidden and couldn't be felt by either the nurses or my onco.  So I'm hopeful that at my post-cycle 3 review they may have either gone or shrunk considerably....and then it's surgery time!

All in all, this has been a good week and hope you too are all feeling as good as can be xxx

Love

Sam xx

 

Teagold
Member

Re: February 2021 Chemo Starters

Thank you @Gelbel 😘 I’ll check them out.

I’ve just bought a little handheld vac in anticipation of the hair shedding, my theory is that if I can hoover them up quickly it’ll upset me a fraction less or at least the rest of the family won’t have to deal with seeing them everywhere! Best laid plans and all that... 

Had a wobbly day today so just like @Kaz11  says it’s so comforting to have this virtual gang out there. I think I’m psyching up for hospital tomorrow. Just hope I don’t bump into Nurse Doom again 🤞
Hugs to everyone

tg xxx

Gelbel
Member

Re: February 2021 Chemo Starters

@Teagold I used Valentinewigs.co.uk. They were good for a call/webchat with  questions, threw in some discounts on top their good prices and no VAT was simple. I used other sites for details of wigs when shopping around for views/reviews etc. 

My 'gym wig' from Headscarves by Ciara came today. Awful comms - well non-existent tbh and a rather curt 'posted yesterday' when I chased it earlier. Nice for day to day if I don't feel like a beanie which shouts chemo patient ⬇️. So bizarre how I'm shreading like a moulting cat but the blooming stuff is longer. So going to get a professional deep clean done when it's stopped coming out. Wherever I look there is hair.

Kaz11
Member

Re: February 2021 Chemo Starters

Hi Rainbow

Yes had achiness in my joints with the injections.  On Monday night I felt like I haf been working out with weights as I had achiness all across the tops of my shoulders and down to my shoulder blades.  Even my jaw was aching a bit.  Last injection of this cycle tomorrow- yay!  Still have to psyche myself up each time. 

Kaz11 x

Kaz11
Member

Re: February 2021 Chemo Starters

Virtual hugs all round.  Your words of encouragement and understanding have really helped me today.

As you say that’s what this forum is for and we all get it.  

Elton John “I’m Still Standing” is my signature tune at the moment.

My oncologist mentioned about the Victoria Derbyshire videos so will check them out.

Thanks so much for all your support my virtual friends.

Kaz11x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

your right the first 15-30 mins of cold cap is the worse , I’m hoping head band on forehead will help a bit !.. that’s good they told you about hair growing back quicker and been positive in keeping at it . That’s funny about you bleeping going to the toilet with the machine 🤣. At least we can still have a chuckle 😁

I probably won’t do any work form home next week with me having 2nd cycle Monday but hopefully will be ok for week after . Just taking it a day at a time really and work are very supportive.

Im sorry you’ve come across some patronising comments that’s the last thing you want to hear . Your right no point telling others you feel ok When you don’t and we are all on here to support each other♥️. How do you find the injections I felt really achy with them. Like yourself suffered really bad heartburn too and found omeprazole helped , sorry you needed the lactulose.  Your right about all the side effects of the medication . I hope you have a better day tomorrow .

Sending love 

xxx

Teagold
Member

Re: February 2021 Chemo Starters

Hi ladies,

@Kaz11 big hugs to you - so sorry you’ve been feeling low. I’m feeling a bit like that today, had a good couple of days but for various reasons just feel down now. This probably sounds ridiculous but I feel like I miss my old life. The friends thing is so hard, at the moment I’m sticking to two mates who I can trust not to “boss” me or tell me things I don’t want to hear, I can’t really face anyone else just now. 

@Gelbel I’m glad you said that about flickering lights and eye stuff, mine have been the same - it’s been really disconcerting. Also doesn’t help that for some reason all the lights in our house do seem to be flickering at the moment! 

@Rainbow70I’m cold capping, just two cycles in so far and I’ve noticed a bit of shedding from various different parts of my body (!!) but so far I haven’t noticed too much from my head. I watched some of the Victoria Derbyshire YouTube videos yesterday which I found really helpful, looks like she cold capped all the way through and she did have some hair at the end although was wearing a wig when she was on tv. So I thought I’ll try to stick with it for as long as I can but I do need to investigate wigs, if anyone has any good websites let me know. 

I hope everyone is doing ok today. I’m back in for cycle 3 tomorrow. Haven’t felt too bad this week with side effects though the port insertion has left me a bit sore (better now though). Have done a few long walks, and good to get out for a bit of fresh air. Hoping I can keep that going.

Hugs to everyone and especially those having treatments today, hope everything went smoothly. 

tg xxx

Gelbel
Member

Re: February 2021 Chemo Starters

A friend saying you're being harsh? They obviously don't know the meaning of the word as that's an oximoron in itself saying that. I'd have to have a word. I'd spout if you can't say anything nice then don't say anything. And there's the 2 ears and 1 gob reminder too. 

Next would be cut me a bit of slack for a few months, next would be forget it.

I'll do anything for my friends. I really would. However, I dropped my bf of nearly 40 yrs a while ago as she was such hard word - realised she was one of life's users and selfish people in a subtle way. Awkward as she is from my gang of 4 at school and I still see the other 2... the other 2 are there in the background for me. Ready for when I need them - a little text from one and a card from another this week.

When I'm hacked off with it all, I think of the lines of various songs. The words 'Don't Stop Believing’ are pinned up over my desk - original 80s vinyl LP ticked away in the cupboard. I smile at a great work do I danced all night at, at Old Trafford (feels so dirty typing that) to S Club's 7 Reach. Mind you A Million Dreams is a great focus song at the moment. Now that was another amazing work night out. Neither are my type of music but it's getting me through if I need a happy place.

I can just picture your dad - that's me. Steradent sized indeed.

And this is why this forum is so good. We get it.

🤗

AnGELa x

 

Kaz11
Member

Re: February 2021 Chemo Starters

Aw Angela thank you for your reply that has so given me a lift today.  As you say I need to ignore certain people who have never been through anything like this but think it’s ok to give me patronising platitudes.  Like when I said to someone I’ll hopefully pick up a bit again by the weekend as that was the pattern the last time and she said well that’s only another couple of days to go!  Yes but you still have to get through those days!  Another friend said I was being harsh in relation to that as people don’t know what to say.  Well in that case don’t say anything instead of rubbish that makes me annoyed because despite lockdown they can get on with their lives where I am going through the most difficult period of mine.  Oh dear I realise I am sounding very bitter and resentful today - sorry!

That’s interesting re your hair that it is growing and the hairs are longer.  I washed mine for the first time in a week yesterday and a lot came out again.  Weird thing is it is still clinging on absolutely everywhere else!

I asked the nurses and pharmacist last week if I should be taking vitamin D.  They said I should as I understand it boosts your immune system.  Just waiting to check with the oncologist though that it’s ok with her as don’t want to take anything without her say so.

I remember my wee Dad having to chew the calcium tabs when he broke his hip and he told me they were rotten.  Disguised as tutti frutti flavour - aye right!  I remember the expression on his face as he chewed them.  They looked more like the size of a steradent tablet to clean your dentures!

Can’t help with the Heinz spread I’m afraid.  My appetite still a bit shot this week so nothing much appealing.

Take care

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 some people really have no idea do they? How it'll pass - pah. Let them try living hours by hour and then day by day for the majority of your life. I ignore my bf for a few days if she gets bossy and reckons she knows what I'm going through. She even tells me what to tell my team. 😤🤬 Then again, my chemo nurse friend sent me the most amazing text yesterday - had me crying reading it... I am now simply at the thought. She'd switched from practical medical mode to friend mode and just got it. Think of those friends, not the ones who are hard work.

We're all entitled to feel sorry for ourselves - on our terms not with them sticking what they don't know in. Do what you need to do to get you through. Wallowing is allowed.

I'm laughing at the ridiculousness of my hair growing as its falling out. I'm on doorstep sized Calcium and Vitamin D tablets as I'm on Biphosphanates - disgusting fruit flavour that have to be sucked or chewed 🤢. They are making my nails grow like mad. My nails do at the best of times without help. 😊 So I did my new morning routine of combing my hair over the sink and the bits of hairs in the bowl are longer. I flipping measured it... 3/4" instead of the 1/2" crop. You couldn't make it up. 😲

How much Heinz Sandwich Spread in a day is too much? Half a jar? Asking for a friend. It seems it's tasty! 

Going to have to test it out... a bit more.

Love AnGELa x 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Rainbow am glad to hear you have been working from home a few hours each day which gives me inspiration as I an still trying to decide what to do on that front.

I have now used the cold cap at both my EC cycles.  As the nurse said to me if you can deal with the initial 15-30 minutes then it is ok and so it has proved for me.  After thst time it settles down and you just get used to it.  They have told me that even if you lose some hair which I have it is proven that it encourages faster regrowth apparently so they seem to want me to stick with it.  They tell me to take 2 paracetamol before it goes on so I don’t get a headache.  Quite comical if I need the loo when it is on (which I always do!) as the machine needs to come in with me as they don’t want to disconnect it during the process.  So last week as the machine and I were reversing into the loo together I made the beep beep noises a large truck would when it reverses which gave the nurses a laugh.  Anything to make light of the situation!

This has been my low week as I had EC cycle 2 last Thursday.  Have felt pretty weak the last few days as my cells dip.  Pretty much the same pattern as last time so hoping I pick up again by the weekend as just feeling sorry for myself 😢.  Have had to take omeprazole for acid reflux and heartburn which in turn affects my stomach so having to take the lactulose again too!  You don’t seem to be able to take any kind of medication without it causing an issue elsewhere.  Never been on so many meds in my life - think if you shake me I would rattle right now!  Have had quite a few “why me?” moments this week too and patronising comments from friends about how it will pass don’t help.  Sorry for being on a bit of a downer but I don’t see the point in telling everyone I feel fab when I don’t!  As I say hopefully will pick up by the weekend.

Good luck with the cold cap Rainbow.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi ladies,

Sorry to hear you've been struggling with side effects. Sending you lots of good wishes, calming and healing vibes for your next cycles.

I'm just on the upward slope of my epic jet lag whooziness with yesterday being the worst day (well it was last time) of my 2nd EC cycle. So hopefully I'll start to feel more normal by the weekend. Lying down definitely helps. Any excuse! Oh boy, I could not shovel enough rubbish down me yesterday - literally eating all the carbs and fats I could get my hands on every hour. I am getting some eye flickering when the light catches me though I am prone to that - chemo exaggerated no doubt.

So lucky compared to you who've needed medical support. 🤗

Take care.

Love AnGELa x