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February 2021 Chemo Starters

Teagold
Member

Re: February 2021 Chemo Starters

Thanks girls for the advice re anti nausea - will keep a close eye on it. Not too bad this morning and managed normal brekkie etc 🤞 but coming off steroids is always the Moment of Truth!

Great to hear you’re feeling stronger @hopeful1974 and getting some exercise is always a boost. I managed to be pretty active last week and it was lovely, thought I’d get some exercise in ahead of this week in case I felt too rubbish to do much! You’re doing amazingly, an inspiration for me as I still have my surgery to come.

@Gelbel sorry to hear about the swelling - hope it’s not too painful? I had something similar around the same stage of Pax, and it was tender under my boob when I lifted my arm or stretched. Could also see swollen ridges. I showed it to the doc who reckoned it was lymphedema or just some localised swelling connected to the chemo. It wore off after a couple of weeks. But sounds like yours comes with other audible symptoms that suggest something else 😂- all these charming side effects eh! Hope you enjoy your rugby today.

And to add to the fun, just this week discovered a mouse in our kitchen - ugh! Neighbours having building work done which is always a classic trigger. Traps down and two caught so far so pest control next week - don’t want to take any chances if I’m more at risk of infection etc. 

Have a lovely day everyone.

tg xx 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

Great to see all your updates.

@Teagold sorry to hear you are not feeling good after the EC.  As @Gelbel says take all the anti sickness meds going.  I had Emend to take for a couple of days (I had the first one on treatment day), then had another to take for several days - Kyril I think.  It’s proper long name begins with a G.  Was also told that the steroid Dexamethasone had some anti sick properties too.  I had Metoclopramide as a just in case but during EC the nurse told me to take them for the first couple of days.  All in all was rattling but it helped.

Pax number 6 was ticked off on Thursday so 3 to go now.  Had a relative staying with me last week so was a bit paranoid about germs but thankfully got the treatment ok.  Am trying to keep up the red meat intake to help my red cells.

Although I have not seen the oncologist for a few weeks I spoke to the nurse about when I will get the bone strengthening drug and radiotherapy etc.  I thought it would all be continuous as the onco indicated but the nurse said a patient similar to me went for radiotherapy straight after chemo (this is what the onco indicated to me) but was told after her initial appointment to line up where her radiation would go etc that she will wait 3 weeks.  I don’t know how many sessions she is due as I am either getting 5 or 10 but was a bit deflated after this as I just want it all over.  Apparently if this other patient is anything to go by I will get my bone strengthening drug post radiotherapy so it appears things are going to drag on for longer than I thought but will need to wait and see.  It might be different for me than the other patient. Portacath will also need to be removed at some point.  At times it feels like all this will never end.

Glad to see you have not lost your sense of humour @Gelbel re the wind!  I am having a bit of that too though not on the scale you mention.  Had really painful heartburn though after pax 6 on Thursday.  The pasta dish I had for dinner kept coming back on me and the acid reflux was awful so it was back onto omeprazole yesterday which I haven’t needed since finishing EC.  Hey ho!  Cheeks were mega flushed yesterday like they were on fire and above my eyelids was also red which was new from last week.  Also noticing lines across some of my nails even though I have been rubbing polybalm into them religiously since the beginning.  Wee hairs growing back on my head though which is a positive.

@hopeful1974 hope you continue to get stronger after your op.

 I am reading the Ticking Off Breast Cancer book which was recommended.  So spot on and can relate to so much in it.  Have had a few tears shed reading it.  Would actually have been good to have read some of the info before but can’t thank you enough for the recommendation.

Enjoy the rugby @Gelbel.  From next week I can actually have someone in my house so a friend coming for coffee on Wednesday which will be great.

Take care everyone 

Kaz11 x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi ladies,

 

@Teagold there are other anti-nausea meds they can give you if you’re aren’t adequate. For me, the ones that worked best were the Dexamethosone and the Emend. Ondansetron also worked but I think it gave me palpitations. Try to note down what you had and when and you should be able to work out what works for you. I hope you feel better soon. It took me about 5 days to feel better on my first round of EC but I think it totally varies from person to person. 

I am doing well after my op, thanks. I am healing well and getting some more movement in my arm. I’m still being very careful as I don’t want to develop lymphedema if possible! I am able to walk for around an hour each day now with no problem which is great as I love my walks! They help me mentally so much with the whole process. I am still sleeping without sleeping tablets. I wake up twice a night on average feeling very hot, which I assume is the chemo-induced menopause!

 

I hope you all have a good day. 

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Teagold sorry to hear  You are not feeling brilliant. Make sure you keep on top of the antinausea tablets. If they don't work mention, to your team so they can change them to one's hopefully will - it's all a little bit of trial-and-error.

How are you @hopeful1974?

And how are you after #5 @Kaz11? Nearly done!

Since Pax #4, I am bloated at the top of my tummy under my boob. My team are keeping an eye on me. I think after much deliberation it's a lot of very trapped wind. OMG TMI -  Me and my husband were lying in bed killing ourselves laughing in the middle of the night - it was like a giant herd of cows on one of those massive US farms. If I'd recorded it I could have made an album.  There's probably a niche market.🤣

I've a face to face with one of the onc drs in my team on Tuesday.  I've a list of questions as long as my arm. Including when can I go swimming and when can I start drinking grapefruit juice again?

So excited 🤩 Because of my volunteering I am allowed to go to our team's rugby match today to report on the match. It's been a long 15 months! 

I hope you all have exciting weekends.

Love and hugs 🤗

AnGELa x 

Teagold
Member

Re: February 2021 Chemo Starters

Hi everyone,

Just wanted to say hi and see how you all are and how everyone’s week has been?

Had my first EC yesterday, and a blood transfusion thrown in for good measure because my Hb levels continue to drop. Was all ok except meant a very long day and didn’t finish until 8pm so will be taking it very easy today. Felt pretty 🤢 last night but not too bad this morning though will just have to see how it goes. One down, three to go...

Hope those with treatments all ok this week and @hopeful1974 hope recovery from your op is still going smoothly.

Tg xxx 

Teagold
Member

Re: February 2021 Chemo Starters

Lovely to hear from you @Linda1967 but so sorry about the extreme tummy reaction and hope you are able to get some reassurance from your doc next week that they can adjust your treatment. Can completely understand this making you feel frustrated and down, hopefully once you will have a clear plan soon and I’m sure that will help. In meantime hope you are taking it easy and being kind to yourself.

@hopeful1974 thanks for sharing about your surgery, I have been thinking one at a time might be easier in terms of having one good arm to work with! Will mull it over and discuss with surgeon again early June. I’ve got so used to only thinking in time increments of one week since starting chemo that I think half the trouble is I just can’t really think so far ahead as July/August, it’s too remote. Normally I’m a big future planner so this is a total shift for me, a kind of non-physical side effect of treatment I guess!

@Kaz11 I couldn’t agree more on the friends thing - one of my lovely friends has sent me a text every single day since I was diagnosed, and doesn’t pause if I don’t reply for a few days she just keeps going. We can’t see each other as live too far away and I’m not really a phone chatter, but I love the texts. I’ve sent her a big bunch of flowers to say thank you. Another fab friend has brought over a meal most weekends - just doubled whatever she’s cooking for her family tea and dropped it off. Without being asked. I hope I will remember to do lovely things like this to friends going through trauma. Obviously the slight downside is my kids now think she’s a better cook than me so not sure how they’ll react when it ends 😂.

Long day at hospital what with two hour wait for bloods then the whole cold cap malarkey. Not helped by me turning up at 10 for an 11:30 appointment (slippery fish syndrome again!). At least I didn’t walk out with a needle in me this time. Seriously considering clipping the hair before I start EC next week - each week feels less worth carrying on with the extra time and hassle of the cap given how little hair I actually have now.

Anyway, nice hot bath , head defrosted so Netflix and bed. 

Hope everyone has as good a night’s sleep as possible.

tg xx 

p.S. @Gelbel  I dozed off in the hospital today and pretty sure I was snoring, chuckled remembering your post about hearing people doing that! 

hopeful1974
Member

Re: February 2021 Chemo Starters

So sorry to hear this, Linda. I hope the oncologists arrive at a suitable solution for you. I would have thought they would see things like this all the time so I would keep on at them until you are happy. Xx

hopeful1974
Member

Re: February 2021 Chemo Starters

I had a single mastectomy with full lymph node clearance. I chose not to have reconstruction as I am very flat-chested anyway so there is not a great deal of difference! I thought I might have both sides flat in time as it would be good to be able to go bra-less but my surgeon was not offering that at this point. I am quite glad now as I am finding my left (non-mastectomy) arm useful for lifting things and getting myself dressed, showering etc. There is also the risk of complications from the surgery plus a risk of developing lymphedema in that arm too so I think I’ll just leave it for now. I can always change my mind in the future and go back for reconstruction or a mastectomy on the other side. The surgeon has said he could do either if I wish. 

Linda1967
Member

Re: February 2021 Chemo Starters

Hello ladies,

 

Glad to see you are all doing well and ticking off the weeks, and I’m glad to see that @hopeful1974 sian’s surgery went well.

 

I haven’t posted for a while, as I was feeling a bit frustrated and low. My tummy troubles got significantly worse. When I went for my second taxol treatment I had a chat with one of the nurses explaining my symptoms and showed her that my tummy was very swollen. They spoke to consultant who sent me for an X-ray, which showed that my tummy and bowels were irritated and inflamed. Clearly my body doesn’t like Paclitaxel at all. I then had to see a gastroenterologist a week later, by which time symptoms had eased significantly. Just means now that my chemo has gone on hold for a few weeks until the oncologist comes up with a new plan as I can’t go back on taxol. In the meantime still continuing with herceptin and perjeta.

 

the whole experience has left me feeling a bit lost and deflated, like I’ve taken one step forward and two steps back. I’ve got an appointment with my oncologist on Monday to figure out next steps. Hoping for a smoother ride from here.

 

sending love and positivity to all of you

 

linda x

Kaz11
Member

Re: February 2021 Chemo Starters

Good morning everyone!

Great to read all your posts this morning.  As usual I was a bit wiped post treatment so just awake.  Was planning to get up at 8 to do some work but the best laid plans and all that… I am enjoying doing some work and took the nurse’s advice and split my day’s worth of hours across 3 days which makes it more manageable.  Doing a report at the moment so not really sending emails which is maybe just as well as my chemo fog is there big time.  Such a fantastic description @Teagold re the slippery fish.  Sooo get it.  I am usually as sharp as a tack so have to keep checking messages - yesterday in a text I put pisted instead of posted.  Quite funny I suppose but need to be careful I don’t type anything dodgy by mistake!  My friend says this is hormone/menopause related too as even out walking with her I have struggled on occasions to get the correct word I am looking for.  However there is hope as I was speaking to the Someone Like Me lady the other day and she says the chemo fog goes once treatment is over.  She also gave me reassurance in other ways as I said I felt I was finding things harder as the treatment goes on.  She said she felt the same as it felt like a marathon getting to the end (18 weeks of treatment sounded such a long time to me at the beginning).  Some days she felt anxious and hopeless so I didn’t feel so bad after that.  She also had the bleeding nose.

Thankfully last night I had no itchy hands so hopefully this new cream has done the trick.  Never thought @Gelbel that I would need to think about scratch mittens at my age - I thought they were only for babies!

@hopeful1974 was going to ask how you are post op so am glad you are feeling more positive and don’t need the sleeping pills.  That’s great news and glad you are getting to do what you want and spend quality time with your Dad etc.  This whole rollercoaster we are on tends to put a lot of things into perspective doesn’t it and you realise what is important.  For me I so realise who my real friends are (to be fair it was the same when I lost my Dad 2 years ago) so will focus on them going forward and the fair weather ones can take a hike.  I need people I can rely on.

@Gelbel am so glad you are feeling so positive about everything sounds great. I am going to take your inspiration for increasing my working hours going forward when the time is right however I will still use my wigs even around friends.  Am not brave enough to display my Max Wall look to them just yet! Have only let a nurse friend see the real look so far.  Great re your bras too and Breast Cancer now also offer a course on moving in post treatment which I will defo be doing.

@hopeful1974  I had a quick look at the website for Ticking Off Cancer so thanks again for that.  Lots of useful info.  As you are aware my anxiety has been rearing its head on and off so it was reassuring to see on that section that she said she was not aware of anyone going through BC who had not suffered anxiety or mental health issues as a result.  Not surprising really particularly as we are having to deal with it at the same time as a pandemic.  That’s what I found hard as well @Teagold watching the Vic Derbyshire videos as I could not relate it to my experience.  As you say at one point she was getting ready to go out to a party and socialising all the time which has just not been possible for us.  Not being able to have friends come in to see me during all this has been the hardest for me.  Even a nurse at the GP surgery when I went for my vaccine told me she’d had BC but all her friends came round at night after their work to support her.  Again not possible.  If you think about it we really have had to endure all this at the most impossible time so the fact that we are all still standing as Elton would say (it is now my signature tune) is a massive credit to us all.  Going to buy the Ticking Off book @hopeful1974 as I think it would be good to read and reread for me as I will highlight bits relevant to me and refer to them again. I sometimes prefer that to reading on screen all the time.

@Teagold  I too am having my greety moments so don’t feel bad about that.  You are getting a massive amount of info to absorb at the moment re surgery so it’s a lot to take in and you have to take time to decide what is right for you.  I found the thought of waking up with nothing post surgery too much to bear so got reconstruction at the time but totally respect that’s not the right decision for everyone.  I know of someone locally who had one mastectomy done at a time as her surgeon was reluctant to do both at once and wanted her body to recover in between.  However did @hopeful1974 not get a double mastectomy?  Apologies if my chemo brain in action again and that’s not the case.  

Good to know @Teagold that it’s not just me with the iitchy hands on Pax as you say must have been a bit of a reaction.  Nose still bleeding too.  Trying not to do a trumpet blowing as you say but sometimes it needs a good clearout - yuch!  Sorry about that if anyone having breakfast.  Also it’s good to get a reminder from your nurse that hormones also all over the place at this time so tearfulness is normal.

Anyway now who has to apologise for the rambling message!

Take care everyone

Kaz11 x

Teagold
Member

Re: February 2021 Chemo Starters

Hi ladies

It’s really good to read these posts and @hopeful1974  and @Gelbel  your upbeatness (if that’s not a word, it should be) is infectious! Sian, really glad to hear you’re feeling well and managing without the sleeping tablets etc. I know what you mean re the book, she seemed to have a way of pitching things that chimed with how I was feeling - the Vic Derbyshire book was great too but she was so busy and active and worked all the way through chemo, still went to parties etc, that at times I felt a bit pathetic by comparison for having been a bit more tucked away from real life, had to remind myself that we have been in lockdown for most of the time I’ve had treatment!

 @Gelbel it’s great to hear you’ve had such a good week and also really helpful info re bra stuff (and Vaseline! I def need to try that as I’m afraid I’ve been a bit of a trumpet-blower and not sure it’s doing me - or anyone around who has to listen - any good 😂).

Feeling better physically this week than last though still ropey through the weekend - realised I’d somehow forgotten to take anti nausea meds and hey presto as soon as I started again - even just one a day - felt more human. But the chemo fog! It’s really catching up with me. It’s like I know there’s a thought/word/fact in my brain somewhere but trying to pin it down is like trying to catch hold of a very slippery fish in a murky pond.  Still been randomly quite weepy this week - got a call from a counsellor who is going to give me some sessions later this month and she said all v normal etc etc and that being a bit tearful - aside from reaction to everything going on - can also be a side effect of chemo and not to forget hormones all over the place at the moment which I’d forgotten completely. So I am “going with it” and having the occasional big bawl when the urge strikes, so to speak, to try and get it out of my system.

Had an appointment yesterday with the local NHS genetics clinic - a full on three hours seeing various different teams. Useful - and I can take part in some research studies etc so feel good that at least my dodgy gene means I can do something to help other people - but also saw the surgical team there, different from the surgeon I’ve already seen, and talked about options and reconstruction with them. Got more info, some of which clashed a bit with what I’d already discussed with my other surgeon. Basically I have to decide whether to go double mx sometime this summer, or one side only now and either close monitor or do the other side later. Yesterday’s surgical team think might be better to stagger and do two ops - shorter op this summer, easier recovery, see how it goes etc etc. This sort of threw me as I’d just assumed better to do all in one. So came home feeling a bit confused and unsure. I seem to be collecting a library of leaflets about it every time I talk to someone but haven’t actually managed to read any of them yet! 

@Kaz11 sorry to hear about the hands - you reminded me that in my first few weeks of pax I used to come home with REALLY itchy hands but don’t get it now. Pax also makes my top lip and gums and bit numb - nothing too major but I guess maybe it causes some sort of mild allergic reaction. Hope it calms down for you. I had a bit more “tingly hands” this week - more on one side than the other - eased off a bit but I’ll mention it at the hospital today. Heading in for #12 and last pax today, feels v strange to be completing phase one as when all this started it seemed impossibly far off. 

Apologies for v long rambly post, thanks for reading this far if you did! Hope everyone is feeling ok, big hugs to everyone.

tg xxx 

 

hopeful1974
Member

Re: February 2021 Chemo Starters

@Teagold Thanks for the book recommendation. I bought it and devoured it over the course of 24 hours! I felt like I was reading about myself throughout so it was very reassuring.

@Gelbel I am glad to hear you are feeling so upbeat. When things start to go right, it is the best feeling. I am feeling upbeat too at the moment as I am feeling well in myself post surgery and really enjoying the little things such as watching films with my Dad, going on short walks, doing my needlepoint and chatting to friends outside or online. I have not had to use my sleeping tablets for the last 10 days which is a huge relief, as I think the GP would have tried to get me off them soon anyway. I have found hope again that I will one day feel semi-normal. I still have the second half of my chemo to come in mid-June, but hope that I will be in a stronger place now to face that mentally and physically. 

Sending you all big hugs and lots of love. Siân xx

Gelbel
Member

Re: February 2021 Chemo Starters

Yeah @Kaz11 - over halfway now! And hair, that's brilliant. 🖐

Your hands aren't so though.  You need some mittens. 👶 I hope the antihistamines work. Hopefully any you had before today's Pax will help.

I'm so happy today. Doing really meaningful work this week and lasting all day without wilting. Though this morning I was so chemo brained, I couldn't get words out on a few calls. 😳

I feel really well, even with my snotty nose 🤧 and blotchy face.

But the best bit... I got my ordinary underwired bra back that the prosthetic team sent away to get a pocket sewed in. Booming marvellous service that's given for free here. I gave them my favourite one which is ivory and they only put in an ivory pocket in. It must be made to measure as it fully fits the cup. It's like one of the softie holders with a big back opening flap and side opening.

OMG. How comfy? I'm aware of the wires - Jeez, not worn a bra like this for 5 months, but it's not rubbing on my scar or anything like that. My proper prosthetic is not half as heavy, the bra hasn't shifted once all day, the side's not rubbing my fat at the end of my MX scar under my arm. As an aside I still can't understand why they don't do a bit of lippo for you when they do the op! 🤔

The best bit is my real boob look amazing as it's got the support I need. 

I've been quite hands on all day. 🤣 I'm absolutely delighted.

TBH today I'm thinking no to a recon. Not that I've had a proper think yet.

I called my BCN team to thank them (they said no one bothers so they were happy with that) and they're sending me a few forms so I can get the rest my bras done and have some spare for when I get new ones. That won't be for ages as they are all fairly new.

The lady I spoke to is also going to check I'm on the list to be invited to one of the moving on courses once I've finished radiotherapy. It seems, again here, we automatically get invited and get on one PDQ after the 4-6 week post rads consultant check up. I'd asked her about any wait time as I hear in some areas you can wait for ages. It's all well coordinated here. 👌

I'm going on my video call with the girls bare-headed - that's how upbeat I am today.

I hope everyone else is. And if you're not, good days are not far away.

Love and hugs to everyone. 🤗

AnGELa x

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Just home so number 5 of 9 now done.

Slept quite a bit in the hospital today as didn’t have a great sleep last night.  Around 4am my knuckles became so unbearably itchy I had to scratch them so much.  The itch would not go and I was worried I would break the skin.  Now know I can take an antihistamine but didn’t know that then so will need to get some.  They also gave me other cream for my hands today which has urea in so hopefully will help.

The nurse also confirmed that “wee sprouts of hair” are growing back on my head!  I thought so but wasn’t sure as it was difficult to tell when I had not cut off what was left.  They could obviously look down and see better than me so am pleased with that news.

Bloods also better so my steak and burger seem to have helped.

Early bed for me tonight.

Take care everyone and good luck tomorrow @Gelbel 

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Thank you @Gelbel and the same to you for Friday.

Will see how my cells are tomorrow.  I have eaten more red meat this week so hoping that makes a difference.

Thanks also for the nose info.  Mine still bleeding each time I blow it.  It is quite stuffed in the mornings so feel like I need to give it a good blow to get rid of everything that has built up as if I don’t I end up sniffing all the time (sorry as I realise that probably sounds quite disgusting). However I get that is maybe not the best thing to be doing!

My knuckles are still red - forefinger and middle fingers of each hand though the left is worse than the right.  I have constantly been putting cream on but not much difference.  They are now a bit itchy too and one has a couple of small blisters now as well.  I mentioned it to the nurse today so they may have to give me something for it.  My hands are soft with the cream but the knuckles themselves feel a bit lumpy with the skin a bit harder in texture.  The joys of all these side effects eh?  
Thanks again for the info.  Night night

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Good luck tomorrow @Kaz11 I hope it goes well.

Re nose: onc nurse suggested Vaseline in my nostrils to help put some dampness in to replace the natural mucus that the chemo's stopping. I'm using my Burt's Bees lip salves. 🤣 They are making a difference.

She also said not to trumpet blow my nose and to only dab, but that's difficult.

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

Glad it’s not just me who slumps at the weekend.  Think I need to remind myself at times that I am still going through treatment and shouldn’t be hard in myself if I don’t feel great.

Thanks so much re the info in the book and the website I will definitely look them up.  That’s what I love about this forum - lots of useful info I wouldn’t have known about otherwise.

Thanks again and hope you have a relaxing evening.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Hi @Kaz11  - ah that’s nice that your friend popped round unexpectedly, that always seems to happen to me too if I’ve been feeling a bit mopey and then I get cross with myself! But you’re not feeling sorry for yourself or being horrible, perfectly justified in having the odd rant! @Gelbel I like the “bearing up” suggestion, I’m also getting a lot of mileage at the moment out of “trundling along”, which is effectively an answer but without really saying anything!!!

Also finding weekends tough after a Friday treatment. Tend to feel physically shattered Friday night, better Saturday but slump on Sunday. Then like you said @Kaz11  once Monday rolls round it’s like countdown to the next treatment. Definitely feeling slumpy today and drained though I did manage a walk earlier to local garden centre - loving getting out in the garden at the moment even though it’s the size of a postage stamp! Next week is my last “weekly” and then I’m on to fortnightly trips. I think I’m so programmed now that even on the in between Fridays I’ll be heading for the hospital like a homing pigeon! 

The book i mentioned is called Ticking Off Breast Cancer. It’s by Sara Liyanage. She’s also put together a website full of useful links, and the book is a mix of her personal story and lots of practical tips and lists etc. I found it really helpful and also really moving. She’s very honest and just says it like it is. It would also be a good book for someone trying to support a friend through this - my mum bought it and read it first bless her so that she could help as much as possible. 

Hooe everyone is having a comfy day - @Gelbel hope the whooziness is wearing off and hair still growing!

tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Just realised our posts must have crossed earlier as I only saw yours just now.

It’s great that you are up to speed with the Pax side effects as I wouldn’t have known about the flushed cheeks otherwise.  Here was me thinking that my face flushed as I had been using my mobile phone a lot stuck to my ear! 🙈🙈🙈 Doh!  I have to admit am a bit of a technophobe but now holding the phone away from me when I use it with the speaker on!

As you say hope Pax not playing tricks with the hair.  Here’s hoping not as you say your fringe would have likely come out.  I will ask the nurse on Thursday to look at my scalp as not sure if it is just wishful thinking on my part when I feel I see some wee hairs on there.  As I said not sure if they are broken originals or new ones.

Like you am tired today so been taking it easy this afternoon.  Did a bit in the garden after my walk but felt gubbed tbh so been lying on settee this afternoon.  The nurse did say to me that someone else on Pax had a dip on the weekend days after the treatment so maybe that’s my pattern.

Take care

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

@Teagold after my rant yesterday one of my friends came for an unexpected visit and we went out for a walk so that’s what I get for being horrible!  Should stop feeling sorry for myself (easier said than done though) and be nice!!!

Interested in what you say about the Ticking Off book - what is that?  Would be interested in info about this.

Just getting ready to go out for my regular Sunday walk with my bestie.  Feeling tired though as sleep been awful past 2 nights and my usual menopause flushing going into overtime.  Going to keep a journal to see if there is a pattern.  I feel on the Friday after treatment I have a good day as another one ticked off the list but seem to feel anxious and low over the weekend.  By the time I get to Monday I am then on the countdown to Thursday again for the next treatment so seem to be more positive.  Finding more of an emotional rollercoaster as time goes on.  Is anyone else feeling this way?

Anyway have a good day everyone.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

So glad to hear you're doing well @hopeful1974. Isn't sleeping decently more than half the battle? And it's great that you're being looked after. Don't forget your exercises and try not to get het-up about the results.

I'm having my whoozy day, which is a shame as the weather's not going to be too bad until this afternoon. 

I'm pleased I've given you hope about your hair. It's still there this morning! I could feel the back of head hair on my pillows too. I hope it's not a false dawn and Pax isn't playing a nasty trick on me. 🤞 Probably not as I'm sure my 'fringe' would've come out with my brows/lashes. 

I mentioned having a blotchy face for a few days a few weeks ago. While my face and chest is flushed on days 2 and 3 post Pax, I've worked out that the blotches are after some time in a mask - Fridays after Thursday bloods (I tend to go and have a natter with my friend while I'm there or the Macmillan girls) and Saturdays after chemo. Of course yesterday's breakout was more than I've had so far - thanks to the extra hour and a bit when I was forgotten. I've been using the hospital masks as they are comfier and bigger and less glasses steaming than mine - and probably better quality, hence more opportunity to cause the environment for blotches to appear.

I tend to tell people who don't know about my situation or if I feel a how if you is only cursory that I'm bearing up. I find it covers a multitude of sins.

Have a super Sunday.

Love AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Lovely to see everyone’s posts today. 
@hopeful1974 so glad to hear you are mending well from the op and being well looked after. 


@Gelbel fab news about the hair!! 👊 As someone who is still v much on the shedding side it’s really encouraging to know that it WILL come back one day. 

@Kaz11 - I totally know what you mean about the friends thing. Some are genuinely amazing but I do feel let down by one or two who just haven’t really been in touch or who’ve done that “let me know if I can do anything to help” thing and then backed off. I still sometimes feel a sort of expectation that I’ll be brave and strong so I don’t really tell them a lot of what’s on my mind. The lady who wrote the Ticking Off book and website covered this sort of thing off really well - about how some people just can’t deal with it and others only really want to hear the “brave” “positive” “warrior” stuff so she would say “I’m fine” or “I’m ok just a bit tired” and not really be honest about how she was feeling through chemo, or emotionally. I found it helpful reading that because it felt familiar. I think this is why I find this forum so helpful because it’s no holds barred and no judgment! 

Very very lazy day today - didn’t even manage a walk. Still feeling a bit wiped after yesterday’s treatment and a bit feeble all round but must stir my stumps and get out for some fresh air tomorrow.

tg xxx 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi all,

Good to read your news today. 

I am doing really well post-op. I have been much more alert over the last couple of days and have had some family members over to sit in the garden today. I am being waited on hand and foot as I can’t use my right arm much. I had my drains removed today, which has given me a huge boost. I am very hopeful for a good recovery now. My sleeping has strangely sorted itself out since the op - I haven’t had to take sleeping tablets since I had it. Of course it could be that the painkillers are helping me sleep (I am having paracetamol and some ibuprofen). Anyway, I am still relieved that I am not using the sleeping tablets any more. 

I will let you all know the results of the histology when I find them out in a couple of weeks’ time.

 

I hope you are all having a good weekend. xxx

Kaz11
Member

Re: February 2021 Chemo Starters

That’s fantastic news @Gelbel so so pleased for you!  Love the fact that you are celebrating with Percy Pigs - never a bad thing!

I thought I had a few strands on my head this morning but not sure if it is broken original hairs or new short ones.  The ones which come out when I comb it tend to be longer so I’ll take anything at the moment and convincing myself it might be a sign of regrowth.  However your definite signs give me hope that mine might start coming back soon.

You enjoy celebrating any way you wish.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

OMG OMG OMG. Just took my wig off and changed into comfies and caught a sight of my bounce. I do look close up most mornings when I'm cleaning my teeth.

I'd do cartwheels if I could. 🤸‍♀️🤸‍♂️🤸‍♀️ Since this  morning I've only had a 4"x2" patch of dark fluff appear on my right side halfway between my ear and the top of my head. And if that was not enough, I've a 5 o'clock shadow round patch on the back.

That's blooming amazing. 🎉🎊🎉

What's more, my eyebrows have the tiniest bit of fluff. Yesterday definitely nothing as it was a struggle to draw them in to look real.

I'm celebrating with half a Percy Pig and half a Victoria Sponge mini cake - both disgustingly sweet.

 

 

 

Gelbel
Member

Re: February 2021 Chemo Starters

Rant away @Kaz11 

My gym wig is my run around wig - shops etc. I think turbans and beanies scream 👉 chemo patient 👈 

I'm thinking of getting a jazzy coloured one.

Friends eh? Might be a case of not speaking to the hard work ones for a while? Or just get in a "can't be long as I'm 'enter slight slide effect' today." I sometimes find it a get out clause if needed.

I hope you and @Teagold are as good as you can be. I'm ok - woke up at 3am but did doze for 40 mins from 6. Bit aware of my tummy so on the anti-nausea tablets. And I must take my indigestion tablet soon - oh my, not good in the night. Couldn't be bothered to come down and take one as it was cold and I was so snug despite the burning. 

Eyelashes 👁 I happened to buy some magnetic ones you use with a magnetic liquid eye liner back in the summer. They were great with your own lashes but pants without. Not helped that I can't put liquid liner on. I've splashed out on Silly George ones this week. I got the one with a clear pen. On right first time. 👊 And the good thing is, the clear stuff goes over your eye shadow etc. They went on at 08:30 and i took them off at 21:00. Compliments all round.

I saw this on QIs Twitter feed. According to the Greek historian Herodotus, Ancient Egyptians would mourn the death of the family cat by shaving off their eyebrows.

I've a sarcastic comment when I hear/see some things that are utterly twaddle I say if.... then I'm the Queen of Sheba. 

Seems I am! 

I hope everyone has the long weekend they want and don't get wet. 🌧 

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

As you say @Teagold it is now May - can’t believe it.  I think it was maybe @Gelbel who said we can both say now that next month chemo will be over provided sessions go to plan.  Indeed something to look forward to.  It has been a long haul for us all.  Think I keep forgetting I still have some radiotherapy sessions to go through too but I know it can’t be as harsh as the chemo.  However I did ask the nurse on Thursday how long it will take my body to recover from the chemo and she said it could be a few months.  As long as the main side effects go I think I can deal with the tiredness.

Like you @Teagold I feel pretty wiped after my Pax session.  It is such a long day though it’s my most socially interactive day of the week as I get to chat to all the nurses.  I will miss them when the treatment is over but obviously not the awful drugs.  I usually have my dinner, a bath and then bed after my hospital visit.  
I found the cold cap really cold and achy a couple of weeks ago so that’s why I had the “shower cap” type thing on underneath it on Thursday to make it a bit more bearable for me.  It was the nurse’s suggestion as now it’s about encouraging hair regrowth.  Still have some hair at the back and sides though it is bare above my ears for some reason.  Practically nothing on top just a big bare patch.  I still have some strands at the front so comb them back over the bald patch - my version of a comb over I suppose!

Now wearing my gym wig most days if I am going out walking or know someone coming to the door.  I do find the band digs into the tops of my ears a bit as the day goes on and they start to throb so I lift it up a bit when back inside so the pressure is off that area.  I wear my turban if I am not going out to look presentable and in case of an unexpected knock at the door.  Also wear it when I go to the hospital.  I don’t wear it outside other than that as I feel it looks so obvious that I am a cancer patient and I have always wanted to look as normal as possible in public.

Eyebrows now disappearing fast despite using serum and not sure how long the eyelashes will hold on either - face now starting to look bare as a result.

Also need a slight rant.  Friends on the whole are very supportive but I also feel that because I am not rolling on the ground crying hysterically every time they see me that they almost forget what I am going through.  They probably don’t know what to say and I am not looking for sympathy every 5 minutes but every now and again a bit of “it must be so hard what you are going through” wouldn’t go amiss.  They just seem to think I am strong and just getting on with it.  No realisation how hard this is every day especially looking in the mirror!  One friend who has been through it although no chemo goes silent if I mention my treatment to the point I have to check if she is still at the end of the phone!  Maybe it brings back bad memories for her but I know if the shoe was on the other foot I would be there and that’s what hurts.  Anyway am probably sounding selfish but I do get annoyed about it.  Wonder how they would have coped with cancer during a pandemic with all the additional restrictions that has brought. At a time you need support no one has been able to come into my house.

Also going to top up my red meat intake too for the red cells so it’s a steak for me tomorrow night and you have put the notion of a big juicy burger in my head now so that will be on the shopping list too!

@Gelbel that is poor that the nurse forgot about you, as if the experience isn’t stressful enough.  However that’s us both now 4 down and 5 to go.  Am crossing every day off.  Next Thursday is halfway of Pax.
Have a good day everyone.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

It’s May!! Pinch and a punch for the first of the month. Feels like we’ve all had quite a lot of pinches and punches over the last little while...

@Gelbel I’d have been v grumpy about being parked and forgotten. Chuckled though as your description of the other people in the ward because I would be one of the snorers - as soon as the portion hits me I nod off and sometimes snore so loud I wake myself up 😳.

@Kaz11 I’m the same with the worrying - anything they mention has me wondering whether it’s “good” or “bad”. Heightened sensitivity at the moment I think. Waiting for blood results back always makes me anxious. All ok yesterday or at least no worse - not sure whether all that spinach and watercress soup made a difference but had an enormous burger for tea last night on basis that it will help my hemaglobin! 
When I get home from the hospital after single Pax I feel literally like I’ve been kicked in the stomach, almost winded, like I can’t even talk or only in a whisper. Feel bad because the family bounce in and everyone wants to know how I am and with it being Friday night they’re all quite jolly and lively and I can’t really chat. It always passes by the next day, I feel fine now. Like I said to my hubby yesterday, it does really feel like over time this stuff is kicking the c**p out of me. I’ll mention it to the nurse next week - it doesn’t really bother me though as long as it doesn’t last.

@Kaz11 on the hair front, are you wearing a wig most days now? I’m figuring we must be similar on how much is left as I also haven’t clipped and still going with the cap. My god it felt cold yesterday. The nurse also put some cotton underneath to protect scalp and prevent headache bless her. I reckon I’ve lost over half my hair and the bald patch on top is still getting wider but I have enough to get away with a cap or hat still - just about. Eyebrows thinning too, I think. Trying to focus on joys of not having to shave legs though!

Hope everyone doing ok. @hopeful1974 how are you feeling? Hope still taking it v easy and not too sore. Big hugs to all.

tg xxx

Gelbel
Member

Re: February 2021 Chemo Starters

#4 of 9 today. Flipping nurse who bobbed me in the chair went to get a trolley to canulate and....... forgot about me.

One hour 15 minures later she came in to update a colleague on the patients in the bay (all snoring or talking on phones 🔊 or themselves) and I was: "Hello! What are we waiting for?"

I do wonder why they give appointment times just before their huddle.? Bet others get forgotten too. But I did choose a corner chair and joked about putting me in a corner!

Well she then got a vein up by my little finger an absolute treat and pampered me all afternoon. Annoyed I missed work team leaving drinks - even our colleague in Texas gets stuck in, even though it's only her breakfast time.🍹 Hey ho, it's 5 o'clock somewhere.🤣

I've eaten like there's no tomorrow since I got in. Might have to take myself to bed before I pop. 🐋

I hope your side effects are minimal @Kaz11 and @Teagold. And, of course, any if you who had a cycle this week.

Happy long weekend. Hugs to everyone. 🤗

Love AnGELa x

 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

Had Pax number 4 of 9 yesterday.  Initially bloods very reluctant to come out of port but thankfully after several flushes they did.  They would have been able to take blood from a vein if they’d had to but they would then have had to do something with the line which would have taken an hour so am glad that didn’t need to happen.

 I explained all my symptoms from last week. Like you @Teagold have the tingly fingers on and off and told them about the light headedness too, bleeding nose, red knuckles etc.  They told me just to write it all down snd let them know if it is any worse next week particularly the tingling as they may have to reduce the dose if it gets worse - think it’s neuropathy they call it.  Re light headedness they said to make sure I am not dehydrated and that my bp may have dropped that day though it seems to be ok when I am at hospital.  If it happens when I walk I have to sit on a wall for a few minutes then take my time standing up.  Loads of places to do this as I walk in a fairly residential area.  Another nurse said my red cell count was down a bit and that could explain it too.  She said not to worry but me being me as soon as someone says this I do 🙈.  My appetite wasn’t great last week so will try and eat more meat and fish this week.  Don’t fancy a blood transfusion if I can help it though that would be a last resort.  Good to know others have the bleeding nose which although sounds ridiculous is so reassuring for me.  That’s the beauty of sharing things on the forum.  The nurse also said to me to look out for other signs of toxicity as the effect of the chemo is cumulative as we know. Happy days!

 I tolerated the cold cap again.  I looked a picture with a shower like cap underneath it this time.  Nurse suggested it to be less harsh as now for me it’s about encouraging the regrowth- not that there is any sign as yet.  Difficult to tell as I did not cut it all off so it’s hard to know if the wee strands on top are new or broken off from my original hair.  I still have some hair at the sides and back.  First 30 minutes of the cap still the hardest but I have now tolerated it 7 times so with 5 sessions left am going to try and stick with it.

Have split my working hours for one day a week over several days and it has helped give me a focus and feel more “normal” so will do the same next week.

Hope everyone has a decent day.  Good luck with pax today @Gelbel and @Teagold I hope you feel a bit better today but if you need another sofa day so be it if your body is telling you that.

Massive hugs to all.

Kaz11

Teagold
Member

Re: February 2021 Chemo Starters

Morning ladies

@hopeful1974 it’s good to hear from you, been wondering how you are - glad to hear you are through the op and taking it v easy, sorry to hear about more waiting re the lymph nodes etc but fingers crossed this doesn’t need to change your plan. Big hugs 🤗 and get loads of rest.

@Gelbel that’s really rough re your mum, we all need people around us at the moment who can boost us up not bring us down, or at least go along with whatever mood we want to be in. I’m getting increasingly sensitive to what other people say and I think it’s why I’m keeping myself to a relatively small group of people who I know aren’t going to upset me with careless words. I hope you feel better after a rant and sounds like you’ve got amazing mates backing you up. This whole thing has really shown me how awesome some of my friends are - and not necessarily the people I would have expected to really step up. Life’s like that sometimes isn’t it. 

Was expecting a rough couple of days for s/e and bang on schedule the last two days have been pretty grotty. Didn’t leave the house yesterday just stayed on sofa. Still feel SO lazy and guilty when I have a day like that - can’t change the mindset. Also been feeling quite tearful but sort of in a good way like I need to get it out of my system, if that makes any sense. Hopefully a bit stronger today as back into hosp for #11, if bloods let me - hemaglobin was low last week so 🤞 for improvement. 

@Kaz11 / @Gelbel  just to say also I’ve had the bleeding/runny nose thing with Pax for weeks - nurse said it was normal and I’ve just got so used to it I’d almost forgotten it wasn’t actually normal. Tingly/cold fingers and churned up tum too but still finding hula hoops and tuc biscuits keeping nausea at bay.

Hope everyone else is doing as ok as poss this week. 
Tg xxx

Gelbel
Member

Re: February 2021 Chemo Starters

OMG @Kaz11 I have the exact same side effects, including my nose. Except a bit more than a bit of blood. All rather messy. My onc nurse said to keep my nails moisturised.

Nothing massive but just enough to know I'm not 100%.

Thanks for yours and everyone's understanding re the old trout. Husband did speak but decided not to say anything. She'd claim she'd forgotten anyway. Hey ho. I asked my pals to adopt me - they've all offered though I have to sleep in at shed at ones. 🤣

If it's the bed you want @hopeful1974, go! It's what your body is telling you. 

Love to everyone.🤗

AnGELa x 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Kaz,

I notice that when my anxiety goes up, my stomach becomes much more unsettled too. It was hard to tell what was from the anxiety and what was from the chemo. I am now on antidepressants which I am hoping may help with the anxiety over the long term. Lorazepam helped with the anxiety too, but as we have discussed, I’m not sure that is something they like prescribing long term. 

Sian xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

So glad you are through the op ok.  Think you deserve to be in bed today - pottering can wait.  You have had major surgery after all so take it very gently.  You deserve humongous amounts of TLC.

Sorry to hear about your lymph.  Hopefully as you say it won’t involve a treatment change but keep us all posted.

@Gelbel that’s rotten re your mum - as they say you can pick your friends but not your family.  Hopefully your husband can relay to her how hurtful this is to you.  We need all the positivity we can get right now so these kind of comments are unhelpful.  Like you my friends keep saying to me that I only have a few weeks left of chemo provided my bloods are ok.  Sending you massive hugs.

I have to be honest have not felt as good this week after the Paclitaxel.  Like you @Gelbel my tummy has not been settled this week but have had quite a bit of anxiety and that always plays havoc with my tum.  Also noticing a few other physical changes like red knuckles on my hands at my forefinger and middle fingers. Seems a bit bizarre but probably skin drying out again.  Bought the MooGoo udder cream which I hope will help.  Also a little blood when I blow my nose in the morning.  Nose running a lot too which I was told would happen as hairs will come out there too so nothing to catch the liquid. Slight tingling in my fingers too.  Will tell the nurses tomorrow about it all.  Not major things in the grand scheme but noticeable differences from first 2 weeks.

On the plus side have done a bit of work this week which has made me feel a bit more normal.

Take care everyone.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Gelbel,

That sounds really tough re your mum. As you say, you can’t pick your family and it would be nice if they could be as supportive as your friends are. I find I have to put a brave face on for my parents and can only tell them positive things. They never want to hear the hard stuff. 

My op went well but the surgeon did have to remove all the lymph nodes as the biopsy showed cancer in one of the sentinel nodes. I now have to wait three weeks to find out if there will be any change to my treatment plan. I really hope not as it is long enough already! 


I hope all you wonderful ladies have a good day. I am supposed to ‘potter’ but feeling like being in bed really! 

Sian xx

Gelbel
Member

Re: February 2021 Chemo Starters

How are you doing @hopeful1974🤗 Comfy and pain-free and managing and being waited on hand foot and finger I hope. 🤞

How is everyone else? I'm still slightly 'aware' of my tummy today. Apart from that physically I am OK.

I need to rant - I can't get this negative comment out of my head. My mother is a miserable cow - she can't say anything positive about anything. Example: her grandson is taking his driving test soon - cue doom and gloom about him being on the road and she's not happy to get in a car with him. Simple - don't then!

So I mentioned to 2 pals yesterday that come Saturday (1 May) I can say; "I'll finish chemo next month." Obviously all being well and I don't have to miss any weekly cycles for whatever reason.

My pals were made up - really saying how quick it's gone/going, how we'll I am doing etc. ❤️ The Eeyore that gave birth to me said; "Assuming they've not messed the doses up." 😭 😡

I let rip. This is a woman who when asks how I am, if I have any little side effect, delights in telling me it'll get worse as chemo goes on. No matter how many times I tell her no it won't.

I think I'm going to have to ask my hubby to call her today and tell her how I feel. I'm still fuming from this conversation that happened at 6pm yesterday.

Family - you can't pick them.

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone 

All the very best for tomorrow @hopeful1974  sending you love and will be thinking of you.

hope you have all managed to have a comfortable weekend .

sending love 🌈xx

Teagold
Member

Re: February 2021 Chemo Starters

Hello everyone,

@CrazyCatLady / Sam lovely to hear from you. Sorry to hear about the dental issues though and hope it doesn’t get worse and that you can get that sorted quickly. Totally identify with what you said about eyes, have noticed my vision changing in last couple of months - I was on the cusp of needing reading glasses (I wear contacts for short sight) and now I’ve had to get some cheapie ones from Superdrug until I can get to the optician. All these extra things we have to think of and like you say feels like ageing before ready for it! Good that you’ve been managing to get lots of healing rest and sunshine therapy with your daughter. 

@Linda1967 sorry to hear you’ve had tummy troubles, paclitaxel (I think it’s the same as taxol?) can make my tum v sensitive too. Trying to manage as best I can with what I’m eating and lots of water. 

Went for a walk in the sun yesterday and came home with very rosy sunburned cheeks! Been so concerned about covering up the bald patch I forgot to put on suncream - doh! - and skin is obvs more sensitive. Tbh makes a nice change from the slightly yellow tinge that chemo seems to have given me... Aside from that, the steroids are keeping me on a relatively even keel this weekend though they kept me awake in the night and seem to make me hypersensitive to noise and light. Bracing for the hangover/crash on Tuesday/Wednesday but gets easier as you know what to expect. 

Anyway, just wanted to pop on here and send big big hugs to you @hopeful1974 - will be thinking of you tomorrow and please do let us know how it goes when you can. 🤗 

Hope everyone else doing ok and enjoying as peaceful and relaxing a weekend as possible.

Big hugs

tg xxx

Gelbel
Member

Re: February 2021 Chemo Starters

That's interesting @Kaz11, I feel my whoozy/light-headedness today. Though it's not as bad as last week. Funny how you had it yesterday and your Pax is a day before mine. Mind you, I did quite a bit of nipping about to various shops yesterday just to get bits and bobs I hate being without. I did nothing after 5pm and wasn't watching the clock for bed time.

@CrazyCatLady/Sam glad to hear some things are under control. Not nice hearing about your teeth, I hope they don't get any worse. Let your dentist's receptionists know you're on chemo, they may be able to squeeze you in, certainly flag to the dentist. Mine did ahead of starting Biphosphanates and they've brought my check-up forward so the dentist can see how mine are doing after 2 infusions.

You're beating me on the hair in length - I'm stuck at 1" and eyebrows and eyelashes just about gone.

Sorry to hear you're suffering @Linda1967. Have you tried the ginger biscuits? They are my #1 go to for any tummy feelings. I suspect you will have done.

My team aren't too bothered about any neuropathy I might have but I need to let them know my nails have started peeling... from the bottom.

Ahhh, battery dying on me. 

Linda1967
Member

Re: February 2021 Chemo Starters

Wishing you good luck for surgery Sian.

Hope everyone is having a good weekend. 
I’ve been having pain for a couple of days ... seems to be in area of intestines. Cramping, tender and bloated. Spoke to nurse who said it can happen on Taxol that they may try one more and if it persists change me onto something else. 
 Hope it resolves as ok other than that.

take care everyone . X

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello all my lovelies....sorry I've been quiet again but sleep seems to be my new hobby!  Can't seem to keep my eyes open these days....but guess it's what my body needs.  Thank you for thinking of me @Kaz11 and fortunately I'm feeling pretty OK 🙂

So good news is that they've dropped my carboplatin so now just the docetaxel & H&P to get through and had C4 on Thursday.  Only 2 more to get through now, so getting there 🙂

So far, so good for day 4 post C4, and so glad that they sorted out my antisickness - ondansatron are definitely my friend this time 🙂  Still getting rotten indigestion but lansoprazol doing the trick for this.

One weird thing that's been happening is my left foot and left hand are 'twitching' but not painful just like the muscle under the skin is vibrating/rippling (like when you have a TENS machine going).  Guess it could be that starting of neuropathy perhaps so something else to check with onco on my next call.  Also got very tiny bit of numbness in my left thumb and index finger but think this may be down to the ganglion cyst on my left wrist which I've had for years!  

My eyes are also completely shot now....so blurry and fuzzy and having to actually take specs off to see/read anything...ugh!  So it's been a bit tricky going through all the posts - so sorry if I miss anything.

Oh and then there's my teeth and gums 😞  Dox has a lot to answer for!  Seems like my gums are receeding at a rapid rate and despite using interdentals, flossing, corsodyl mouthwash, plus Genegil to use on my gums, they are getting really bad and think I'm on the cusp of peridontal issues.  Got dentist booked for July so hopefully they can reverse the effects...but may give them a call next week to see if there is anything else I can do.  Gonna get myself a water pic flosser too so I can get better access to the back teeth but just hoping I don't end up needing bloody dentures! Not ready for this at 53 😞

Anyway, enough moaning....I've had a couple of lovely days sat in the sunshine with my daughter and enjoyed being outside rather than huddled on the sofa.  Also put up a baldy pic on my FB timeline so my true look is now out there for all to see.  TBH I can't be bothered with all the covering up and doing make up at the moment - so you'll just have to take me as you see me, and I'm fine with it 🙂  It is what it is and it will only be temporary.  Currently getting new 1.5" strands of grey coming in now, so catching up with @Gelbel 😁

@hopeful1974 good luck for tomorrow and hope all goes well and speedy recovery xx

@Kaz11 oh know what you mean about the lightheadedness, that's what did for me in previous cycle.  Hope it's settled down for you now xx

Good to hear you've been bashing away at your work issues and hopefully they will all be sorted out soon for you (if they haven't already).  Go you power girls!!  

@Linda1967 glad to hear you're doing betting on the pax and good luck for the next one.

Sending hugs and positive vibes to everyone else - @Rainbow70 @Teagold @Leftygurl 

Hope you all enjoy your Sunday today and you all have a good day with as little side effects as possible....mine are kicking in again now so off for a pre-dinner nap lol 🙂

xxx

Sam ❤️

 

 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

@hopeful1974 as you say let us know how you get on tomorrow.  Will be thinking of you.

Nice day here again so heading out for a walk shortly however going to take it easy today as think I overdid it a bit yesterday.  Think because I’ve felt ok last couple of weeks I felt normal-ish then bit light headed yesterday so got a bit of a fright.

@CrazyCatLady how are things with you?  Just checking in as have not seen you posting for a while and just wanted to check you are ok.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

Thank you very much, Angela. I’ll keep you all posted as to how it goes. I may be home tomorrow night or on Tuesday morning, depending how it goes. 

I hope you all have as enjoyable a Sunday as possible. Siân xxx

Gelbel
Member

Re: February 2021 Chemo Starters

Good luck tomorrow @hopeful1974. I'll be thinking of you and sending lots of good healing wishes. 🤗

All you other ladies, enjoy your Sunday and may you be side-effect free or as comfy as possible. 👌

Love AnGELa x

hopeful1974
Member

Re: February 2021 Chemo Starters

Thanks so much, Kaz. I’ll let you know how it goes! Big hugs to you too. X

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

Enjoy the sun today it’s lovely here too.  Getting all the washing done and out to dry.

Wishing you all the best for your surgery on Monday.  Will be thinking of you.

Sending big hugs

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

I really love reading all your posts, ladies. It really makes me feel like I am not going through this alone. 

@Teagold, I know what you mean about all the surgery options. My surgeon and nurse really tried not to sway me while presenting all the options. I did come to my own decision in the end but it was tough! Everyone has different priorities. I am now looking forward to just getting it done on Monday. I am supposed to be self-isolating from now until then so that is a bit hard when I live in a house with my husband and two teenage children! I am doing my best, though, and think I can sit outside for a lot of the day. 

Hair-wise, I have a thin covering now which I had buzz cut after round 2 of EC as so much had fallen out. The little that is now left does seem to be getting longer again (my last chemo was on 12th March). Of course, it will come out again once I am on Paclitaxel and Herceptin but I am debating whether I should still persist with the cold cap just to keep what I have if it helps the regrowth. 

I hope you can enjoy the sunshine a bit if you have it. I mostly sit in the shade with sunscreen on as my skin is still sensitive but it is good to be outside. 

I’m off for breakfast now and then plan to read on my sunlounger! I hope you all have a good day. Siân xxx

 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

Just heading for my bath shortly too!

The hospital recommended Nioxin hair products for when my hair comes back as they help to thicken it up.  There are different systems.  System 2 would be the one for me as it is for natural hair with progressed thinning as I don’t have much left.  Although my hair is coloured it had grown so much in lockdown that the stuff at the top was pretty grey.  System 1 is for light thinning.

You can get the products on Look Fantastic or amazon.  There is a trial pack of shampoo, conditioner and scalp treatment on Look Fantastic for about £34.  However the nurse yesterday said I would also need the hair/follicle booster which is not in the trial pack.  It is a white/purple bottle.  It seems to be sold out on Look Fantastic and is expensive at around £40.  However I see it on amazon for around £30 though it may be a smaller bottle.  

Feel like I have had to spend a small fortune thanks to BC between wigs, polybalm for nails, eyebrow/eyelash serum, turbans and headbands and now hair stuff but if it helps my hair come back I will suck it up as my hair means so much to me.  I have also bought a paddle brush to stimulate the follicles on my scalp when the time comes too.

Sleep well

Kaz11 x

 

Teagold
Member

Re: February 2021 Chemo Starters

Thx @Gelbel - hats off to you for managing a 12 hour work day! I’m impressed - a couple of video meetings nearly finished me off on Weds! 
Your post just now made me think of that nursery rhyme about the little girl with the curl in the middle of her forehead 😂
Weirdly feel less wiped out tonight after treatment than the last two Fridays even though today was pax with a carbo chaser rather than single shot. Must be the steroids they gave me. Surgeon appointment was good - she really took the time to explain it all and answer questions, crikey there are a lot of options and things to consider. It’s like a new project - I’ve got to read a load of info and then meet her again early June. Surgery likely end July or early August. Luckily my husband is a teacher and with the kids being on summer break I’ll have extra pairs of hands at home to fill kettles etc. She also gave me a boob prod and said initial lump now barely palpable so will keep this in mind when the side effects kick into gear in a few days when steroids finish, the drugs seem to be doing what they need to do. 
Just had nice hot bubble bath to defrost my ice-capped head and shan’t be long out of bed. @Kaz11 what are those haircare products? I’m up for any recommendations.

hope everyone ok and fingers crossed for good nights sleep all round

tg xxx

Gelbel
Member

Re: February 2021 Chemo Starters

Haven't said what else I've had. Only a mall bowl of protein granola before chemo, biscuits with a cuppa in the chair, oat cakes and cheese when I got in, Thai green curry and Chinese special fried rice thanks to Waitrowe, bit of chocolate, a bag of French fry crisps and the scrap ends of hubby's chips from his curry.

I did manage the dates on their own.

Could do something else but can't think what. I'll see if hubby eats all of his - no calories in food from someone else's plate. 🤥

And I wonder while I'm piling it on. I'm barely exercising as I hate walking.