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February 2021 Chemo Starters

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon everyone 

@CrazyCatLady so pleased to hear that your op went well.  Amazing that you got home the same day as surgery so well done you.  You are one strong lady.  I was told I could go home the next night but was too nervous so stayed the extra day.

Love the way you describe the new set of twins, you have a great sense of humour!  Know what you mean re the uplifting.  My new one with implant is much perkier than the other side.  I probably said before but don’t think my plastic surgeon appreciated my humour when I said how are you going to make the new one match the saggy one on the other side (I was nervous and trying to lighten the mood).  He said that was why he had suggested corrective surgery to the other side to even it up so my joke was lost! Fingers crossed for your post surgery results that you get the news you want.

Great re the makeover too that will give you such a boost.

@Rainbow70 glad you are using the nioxin.  I think it’s definitely helping my hair grow back. Still very fluffy and soft.  Will see if that changes.  Also definite fuzz in the eyebrow area today for the first time.  Have felt all week that there was dark shadow in that area but wasn’t sure if it was my imagination or not as only about one original strand on either side left. However there is definite growth today.  Like the hair on my head it feels very soft not like the usual eyebrow texture but it’s coming back and that’s all that matters to me.  Using Lipocils serum in that area so hopefully that’s egging the regrowth on too.

Started the Moving Forward course so have just watched a tutorial on exercise which was really helpful as I was concerned that there were maybe certain exercises I should avoid due to surgery/reconstruction.  Feeling tired today but trying to do a bit more exercise this week as it makes me feel a bit more like me.

Love to everyone and I hope @Gelbel@Leftygurl and @Teagold you are all ok.

Kaz11 x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning my lovelies!  Yes I'm still here....just been rubbish at catching up and generally just getting on with life and stuff!

Just been reading all the posts I've missed in the last few weeks and sounds like you are all progressing well (despite all the niggles along the way).

So I've had my surgery on Monday and it all went well....and looks like they managed to save both nipples, so yay!  Did throw up big style several times after I came around from anaesthetic and my BP dropped like a stone so had a few hours of waiting to get this all under control before they let me out.  Surgery at 11am and home at 8.30pm - very tired, tender and achy but so far paracetamol and the occasional co-codamol have been enough to ease up the pain.

Managed to shower yesterday so got a bit of a better look at how the new set of twins look, and quite pleased with the results so far.  Seem very high up now and very much 'uplifted'!  So no longer dangling down onto my belly lol ! Going to take a while to get used to them 🙂

They did the snb incisions under my arms but the one on the left is a bit higher and the more 'tweaky' of the two...been doing my exercises and already seem to have pretty much full movement in my right arm, just the left one to keep working on.

Hubster has been leaving me a thermos of coffee and a breakfast selection platter for the last couple of days as he's had to go into work.  And daughter had to help me get the compression socks back on yesterday...can't do these at the best of times, so never mind when I've just had surgery!

So all in all, despite my anxiety about it, it has all gone really well - just waiting for my appointment to come through for the wound dressing check and to see how everything is healing (but from how I'm feeling, I think it should be doing ok).  Been told results from surgery will be around 3 weeks, so fingers well and truly crossed that I get the news that it's all gone and I've got my PCR!

In other news - hair is definitely sprouting through well and the top of my scalp is now filling up too (sides and back is already around 5-10mm so was looking like a monk lol!)  Also coming through a more dark grey too, which makes it look a bit more substantial - but still have the silver strands in there too.

I've also won a free Boudoir make over and photoshoot to be done at the end of August - so time for me to fully embrace my new look and body shape.  Love having make up done (they offered to do hair too but not really that much to style yet!) but may take my wig so I can have some photos with and without.  Also get an afternoon tea with fizz as part of the package....but only just back on the wine so think one glass will be my limit.

And this week my daughter started her new job and on Friday she will be taking her driving test...eek!  She's been using my little Fiat 500 and her driving instructor is taking her out in it again today for a 3 hour lesson before tomorrow's test at 8am!  So hopefully there'll be more good news by the weekend xx

Hope you all manage to enjoy some of the glorious weather we shall be having over the next few days.

Love and hugs to you all - @Rainbow70 @Kaz11 @Gelbel @Leftygurl @Teagold @Linda1967 xxx

Sam xx

 

 

 

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello ladies 

hope you are all doing ok ?

@Leftygurl @Teagold so pleased you have both finished chemo and another two flags planted at the top of the mountain. Cupcakes looked amazing for the nurses @Leftygurl . I hope your wound is also continuing to heal well . @Teagold hope the scans went ok and you have not to long to wait for the results . Also hope your daughter is doing ok.

@Kaz11 how are you feeling after the rads ? fab news eyelashes are growing and you have hair appt booked.  I have bought some nioxin treatment so 🤞helps with the hair growth . Interesting  to read you still have lingering side effects too from the treatment . Glad no major side effects from the hormone tablets 🤞stays that way . I have some neuropathy to fingers / toes occasionally and two discoloured nails . Half way through paclitaxal started with burning , stabbing pain to shoulder joints . This has settled now to right side just have it on and off left side but much better than it was before . Veins are so hard in arms to after chemo. Start rads next Monday 5 sessions !  

@Gelbel Your nearly at the end of rads ..👏 sorry to hear about all the delays. Good to hear you have hair appt booked in too and great  news about the retirement decision. 

Sam how are you doing ? 

love to everyone 🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Great to hear from you and now you are on the home run re the rads.  Well done on getting to that stage - you are nearly there.

Like you I found it all quite impersonal compared to the chemo treatment but then I was almost in for a full day each chemo treatment as opposed to the few minutes for rads.  I was told by someone recently that the hospital where I went has 10 machines which do rads and they can see up to 40 patients a day at each one so that’s a lot of people.  It felt very much like a production line to me and I felt a bit rushed and stressed if I needed to ask a question as they were already wiping down for the next person as I was getting off the bed.

Interesting re your scar as mine was a bit sensitive too.  I have been using the cream they gave me but I didn’t get too much of a rash.

I started Letrozole 2 weeks ago.  So far nothing major re sfx touch wood but I’m not counting my chickens.  Legs very stiff in the morning until I get going but I was like that towards the end of chemo anyway.

Still a bit tender where portacath was removed but they did go through the same scar so I suppose it is likely to take longer to settle.  My skin generally is also a bit itchy and still have neuropathy in my fingers and toes on and off.  Menopause flushes off the scale!

Was at dentist today for a check pre bone strengthening next week.  Didn’t appreciate the affect it can possibly have if you need a tooth removed so something else to get my head around.  Dentist said everything ok at moment but I have some teeth which are heavily filled which could cause issues down the line.  He said some people get potential problem teeth removed pre bone strengthening but I am not going down that road.  Not keen on a “just in case” extraction. Getting anxious too about the bone strengthening as I was told it will make me feel rotten for a few days so not looking forward to that.

Hair is growing but still very silver fluff.  Like you I have made an appointment to get it trimmed and into a shape late August as I hope by that time it will have grown enough to work with.  Eyebrows gone but feel there is some 5 o’clock shadow there as you say so am hoping that is a sign of them thinking of making an appearance into the world again.  Also have some eyelashes coming back.  I felt them there for the first time yesterday.  That gave me a lift as my emotions have been up and down like a rollercoaster.

Well done on making the decision to retire.  As you say you can do without the stress of work.

Hope everyone else is doing ok.  I have signed up for a Moving Forward course.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Ah, my rather lengthy update has disappeared.

In summary

  • 5 rads left
  • All rather impersonal
  • Quite often there are (lengthy) delays - though one particularly radiographer does try to get me in on another machine if she can
  • Skin holding up, though my scar's sore so I'm back to using my heart pillow in bed Not helped having to wear mastectomy/sport bras as underwired not recommended during treatment. I go without when I'm at home.
  • Skin feels hot and tight
  • I HAVE THE TEENIEST, TINIEST, COLOURLESS EYEBROWS that I pop some powder on for colour so I no longer look like an alien
  • I have a 2 o'clock (as against 5 as it's barely visible) shadow of dark hair growing amongst the white/grey front part of my head
  • I'm having a little trim on 19 July to even my hair up and coax it to grow more
  • One of my tablets (probably bone ones) make me feel queasier than I ever did on chemo. I could 🤮 if I think about it
  • No hormone sfx... yet 🤞
  • I've worked out I can afford to retire - decided Friday and aiming for October next year to get my head round it and max. my pot. This year has taught me it's not worth flogging myself no matter how much I love my job/team

Sorry to hear your last Pax was rotten @Leftygurl and @Teagold I hope your daughter's back on both feet soon.

Love and hugs to everyone. 🤗

AnGELa x

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

Ahh yes that’s me as well, pulling my myself up the stairs using the bannister, my last Pax treatment certainly gave me a rotten send off! My knees are really aching today, mind you it’s like a switch someone throws after I finish my 3 days of steroids, I did have an active weekend though, went out mountain biking on Saturday then went for a 9 k walk Sunday and felt pretty good! Then no steroids Monday and I’m crippled. I’m so looking forward to this lot getting out of my system and finally starting to feel like me again, mind you until rads start! 
You sound like your rushed off your feet, what with your poor daughter and coping with your sfx, at least it’s all temporary, which is what everyone keeps telling me, I know they’re right but it’s hard when you have something happen in your family like that, try to take time for yourself, and good luck with your scans!

xxx

Teagold
Member

Re: February 2021 Chemo Starters

Hi Alice / @Leftygurl 

Gosh so sorry to hear that you’re still having your wound snipped but good at least that it’s not getting worse and that the process doesn’t hurt you.

How was your last session last week and how are you feeling? Congratulations for getting through it all, especially with everything else you’ve had to deal with. Those cakes look amazing, I bet the nurses were thrilled. Mine had to put up with M&S biccies and Percy pigs 😂 I could never manage to make anything as beautiful as that!

Hope everyone else doing ok. I’m slowly coming out of the worst of the after effects of my 4th EC. Last week was a blur between feeling grotty and trying to look after my daughter who is still home from school with her broken leg so needs lots of fetching and carrying poor thing. There were days when I actually needed to pull myself up the stairs using the banisters! I’ve got scans this week, so naturally I’m getting a bit nervous about those but hope they show progress.

big hugs everyone

Tg xxx 

Leftygurl
Member

Re: February 2021 Chemo Starters

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Hi everyone!

@Gelbel Your experience of rads sounds incredibly traumatic, I really hope that my week doesn’t go that way, I hope the rest of your appointments go a lot better. It sounds like you gave them a piece of your mind though, good girl!!
I’m interested to know if everyone who are at the rads stage have taken the week or whatever the length of treatment off work as I will probably be starting in about 3 weeks time.

So, it’s my last chemo tomorrow and tbh I can’t bloody wait! When they give you the anti sickness and steroids and it makes me feel quite giddy, I hate that, and when the paclitaxel is being infused I get this severe drop in my mood, it’s all I can do to stop myself from ripping the line out and running out the door, but I will miss the nurses, they have been wonderful and I made some cakes for them all today to take tomorrow.

On the portacath wound front, it’s much as before, walking big hole in my chest that I rinse out every day, put some gauze in the cavity and a plaster over the top. I saw my plastic surgeon last Tuesday and he got his surgical scissors out again and snipped out the stuff that’s stopping it from healing properly, it doesn’t hurt. I’ve just got to try and keep it in this state until after chemo & rads and when my body becomes healthier so some proper healing will begin, hopefully, fingers crossed!

Love to everyone 

Alice xxx

 

 

Gelbel
Member

Re: February 2021 Chemo Starters

Oh @TG how very sorry I am to hear about your son. I can't imagine for one second how awful that must've been. And I'm so with you on not making others feel uncomfortable.

I went with how my hubby and I got together. A few people pinged me to say they were surprised I didn't go with my BC story. It was part 3 of a 3 part (verbal) presentation course and we had 1 minute today to bring the story to life. Then we gave each other feedback. Wouldn't have been kind to my colleagues to have to give me feedback on any aspect of me telling my BC story.

My rads story... no saying my machine was experiencing a delay. Or more rightly not working. A couple of them had 20-30 minute waiting times showing on the notice board - but not mine. 40 minutes past my time I went to reception to ask what was going on, a radiologist called me just as I was to ask. My machine was broken and it could be another 20 minutes at least. #Fuming. Why not tell me when I arrived - manage my expectations. On the dot of an hour late I was called. 11 minutes later I was out.

Seems someone had tampered with the machine so even the 'turned off in neutral' calibrations were messed up. What the actual? 🤔

I vented in a talk polite and slow (just completed an impactful, verbal presentation course) type of way. ☺ This is just day 2. I heard patients saying over 50% of their treatments are late, it's like being on a factory line, so impersonal and it seems I should never had been told my appointment times would be the sameish time. This nugget of information is also in their rads info booklet, which I happily pointed out. The end of the day/start of the next day appointment time v patient welfare was also mentioned.

I'd got more response telling the tank of fish in reception. Awful, awful experience after the wonderful experiences I've had so far.

And it's not even Wednesday. Everything goes wrong on Wednesdays!

I hope you have a good Wednesday. 

Love and hugs 🤗

AnGELa x

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi all

Sorry it’s so late and I’ll try not to ramble on in this post and make it a bit shorter than normal.

@Gelbel you are not being selfish at all.  That’s rotten re your rads appointments being all at different times I think that is so unfair on you as the patient.  I was lucky as mine were at the same time each day but to not even have the same times in one week is so unfair.  They should be taking into account how tired you could feel so not right to be in late one night and in first thing the next day.  So annoying I would be raging.  No wonder you are not a happy 🐰.  As if this whole experience is not hard enough.  Sending big hugs.

As for the trainer as @Teagold says I would love to be a fly on the wall when you paste him to it.  You go girl!

@Teagold I am so sorry about your son.  What a horrendous time you have had that’s just awful.  Big hugs on their way to you too.  Life is so unfair.

Glad the info I got today was useful.  I would not have thought about the reactions of family being the opposite to ours until she said. I know someone whose husband arranged a surprise party for her post treatment and she was just not ready for it.  I know on Friday I just wanted something to eat and then get to bed.  As you say @Teagold we don’t feel our best and I know exactly what you mean re how you look getting you down so I certainly ain’t in the mood to be a party animal right now - wouldn’t have the energy either.  Unfortunately unless people have walked in our shoes they don’t get it.  They need to realise our bodies have been hammered and as the medical people keep telling me it will take time to recover physically and emotionally so parties will need to wait.

Sleep well everyone.

Kaz11 💤

Teagold
Member

Re: February 2021 Chemo Starters

Hi ladies,

@Gelbel v sorry to hear about the rads schedule, that sounds like a real jumble and inconvenient. Not selfish to grumble about that at all. Would love to be a fly on the wall at your training course. Perhaps you’ll knock through the patronising and do him a favour! I hate those sort of icebreaker exercises. The first thing that usually pops into my head when they ask for a life changing experience is “my son died” and then I feel like I can’t say that because it will make everyone feel uncomfortable then it just stresses me out that I’m making up something else!! 

@Kaz11 that sounds like such a helpful chat you had, and loads of really useful and reassuring info (for us all). My counsellor said the same thing when I spoke to her first time about emotions catching up after treatment and all being v normal to feel completely done in and weepy towards the end. I remember noticing how untearful I’d been for the first few months of treatment, just shock I guess and as you say being a bit “head down just got to get on with it”. It’s interesting also the difference between family emotional reaction and ours, I hadn’t thought of that. That’s helpful because I can foresee that people’s reactions and expectations might get harder to deal with - already I’m detecting a bit of “hurrah! You’ve finished chemo you must feel like celebrating” and I’m like - er, no, I’ve still got two big blocks of treatment to go plus all the uncertainty and not to mention I’m shattered and look a fright which is getting me down. It’s just so reassuring to hear that most people feel like this and it’s all normal and all ok to just let the tears flow when they need to. I’m feeling very antisocial and happiest when I’m home in my little bubble. I think it’s amazing @Gelbel that you managed so much socialising and not surprised you were so tired. I just feel I’ve lost all my social skills and couldn't cope with any kind of gathering at the moment. 

Also, keep going with the sweets and choc @Kaz11, I’m heavily into comfort food at the moment and figure anything that makes us feel better is worth it. Now isn’t the time to be fretting too much about it.

I’m definitely tireder after this fourth EC so have been taking it very easy (aka being very very lazy). Daughter is home from school hopping around on crutches, getting us both up and dressed this morning was exhausting so we have been on the sofa watching Friends for most of the day. Fortunately she now loves it as much as I do 😂.

Hope everyone else is doing ok.

Hugs to all

Tg xxx 

Gelbel
Member

Re: February 2021 Chemo Starters

Thanks for sharing your chat with the radiographer @Kaz11  - good to know we're 'not going mad' with our reactions. Interesting re the leg aches. And believe me, I had no stamina when we were away - crawling into bed at silly o'clock.

Rads #1 was boring - look a bit longer as they did more imaging. I'm not a happy bunny - sorry if this is selfish... got the rest of my 15 rads appointment times - so much for sameish time everyday. Some 6pm - one of them a Friday! Some of days after the late ones, I'm back in at 9am. They can't change the times. Shouldn't tell you expect sameish time if they can't deliver it. It's not as if it's late one week, afternoons another and mornings another. Oh no - a right mix every week. And it means I am going to have to cancel my virtual make up class scheduled for Wednesday. Not happy at all. 😠

I know that a few weeks after rads finish, I'll have a consultant's appointment and that (in my authority) triggers an invite to the Moving On workshop/s. I will be signing up for that/them.

And because of the times I'll now be able to go to a training course our team is on. The lead trainer has a patronising, superior attitude - everyone has complained about him. We have to tell a story about something that changed your life for ever. He's getting both barrels - and I'm in a very safe (virtual) environment with my teamies! HA!!! 😈

I hope everyone's day has been better than mine.

Love and hugs 🤗

AnGELa

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon ladies

@Teagold so glad you got your last EC as planned that will be a weight off your mind.  I remember each week worrying whether or not my bloods would be ok to get treatment.  It was always such a relief when they were.  Not that I wanted the chemo (who does?) but just didn’t want any delays.  I think that would be particularly hard to take especially at the last one.

Sorry to hear about your daughter that sounds so painful. No wonder you are emotional as it’s something else for you to worry about.  I hope she gets better soon.

Thanks re the counselling.  It hasn’t been offered specifically but I am now back in touch with one I spoke to after I lost my Dad. He has no experience with BC but it’s good just to get things off my chest to him (pardon the pun!). The moving forward course will be good but feel I need to catch my breath a bit post the end of rads before I look into the details.  I also have a moving forward folder from the breast cancer nurse which I will read too.

Had a follow up call this morning from one of the radiographers.  I was told on Friday this would happen as they check your sfx post rads.  The girl was so lovely on the phone.  I have a slight pinky redness which I have cream for.  I also said I felt my menopause flushes were more intense last week and more frequent especially during the day.  One minute roasting next freezing very regularly.  She said rads have a knock on effect re temperature and hormones so she was not surprised re the flushes and said it should settle.  I have to make sure I take plenty fluid as losing some with the sweats.  I told her I started the letrozole today.  My legs in particular are achy anyway post chemo and I have been told that the letrozole does this too.  She said the achy limbs are a late effect of chemo which can last for months after.  Some people think it is the tablets causing it when in fact it is the chemo so that was good to know.  I mentioned about feeling so emotional.  Instead of raising a glass that the treatment was done as someone said to me on Friday, I just wanted to cry.  She said that is all totally NORMAL.  She said I will be up and down during recovery and not to beat myself up about bad days.  There is no timescale for recovery which sounds very much like the grieving process.  She said if she had a pound for everyone who said they were more emotional post treatment than during she would be rich!  As everyone says during treatment you just take it a day at a time and plough on as you just need to get through it.  She told me about research done in the Netherlands which confirmed that emotions catch up with patients after the end of active treatment which is perfectly normal whereas it is the opposite in family/relatives.  They are more anxious during treatment as they are watching us go through it and are then relieved at the end of it.  So the science as they say (very common phrase being used by the politicians during Covid) has proven that I am not losing the plot because I am bubbling! Seriously though she did make me feel better and said to let the tears flow - better out than in!  Good advice as I feel family members think I should be giving it party party right now! A girl locally I know who has been through it said she was the same post treatment - hamster cheeks, no eyebrows, no eyelashes, spotty skin, sore nails, achy legs, tired and tearful - ✔️ to all of them!

Anyway don’t mean to sound a misery guts.  Feel better that it’s not just me so thought I would let everyone else know it’s ok to be feeling like this post treatment.  If you are not, even better!

On a positive (thank goodness I hear you say!) my hair is coming back on my head.  Think the Nioxin is working.  Can still see quite a bit of scalp but not as much as before.  The silver fluff is definitely growing!

@Gelbel so glad you enjoyed your break.  You have some stamina managing to not be too tired after catching up with so many people so well done you! 👏.  Go @Gelbel!

Hope you get the rads later today as planned - fingers crossed for you.  Great that your hair is coming back too, fab news.

Re eating think I need to rein in the chocolate bingeing.  Enjoying too many sweets and have put on 2kgs post chemo so need to get a grip! Eating things I couldn’t for ages due to the indigestion so fizzy peaches, fruitellas, chocolate, chocolate and more chocolate getting a pounding.  Going to turn into a 🐷.  Oh dear 🙈.

Anyway off to tackle the massive ironing pile - had to rewash everything which had been drying outside as a neighbour put their fire pit on so everything was stinking of wood smoke 😡.

Love and hugs to all.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone, I'm meant to be on my way to my first rads now. Had a call just before 8am to tell me to go in later as final sign off of the plan was needed.

Nice week away but as I took it as sick leave, I kind of felt like I was bunking off and felt a bit guilty! Lovely seeing my family and our besties. I didn't get emotional seeing people as I thought - my aunt did a bit. I got teary when my brother and mum asked about support from friends and ladies 'in similar positions'. Told them all about this wonderful thread and you!

Shattered though - we ate out with people everyday and some days 2 sets of people so all I wanted to do was sleep when we got back to the digs. I did chill in the sun under a parasol with SPF30 on a couple of times. I even had the concentration to finish a book I started post-surgery.

I was worried about how tired I am but... a decent night's kip at home and I wasn't nodding off yesterday and lasted til gone 8pm when I went upstairs to watch the last part of Time, and I'm wide awake this am.

I'm going to call my GPs later - not convinced my Onc has my Ibandronic acid and calcium/Vit D tabs on repeat prescription. As it wasn't requested in the letter that was sent - the Anastrozole was. I start them on Friday. 😟

Came home to a lovely box of goodies from Little Lifts. I think that Udder cream will be useful over the next few weeks. The sweets will - I'm getting that queer 'not really nauseous' feeling if I don't eat little and often. That's a pain as I am gradually shifting weight from sensible eating as I up the potassium-rich food. 

Have a great week everyone. Hope you feel OK after your last chemo @Teagold and your daughter gets back on her feet soon. Just what you need - not!

Love and hugs 🤗
AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Thanks everyone for the lovely words about my treatment. Glad to say that bloods all ok yesterday and so that’s 16/16 officially . I think I really identify with what you said about finishing rads @Kaz11 , I feel sort of nothing really which is partly “can’t quite believe it” or maybe “can’t quite believe I’ve just been through that”, but also as I don’t really know what my future treatment plan is so trying not to get too fired up in case I’m told I need more chemo of some kind after surgery.

The other thing that’s probably impacted how I feel about it all is that my poor younger daughter had a nasty fall at school on thurs and now in a leg brace and on crutches with a chipped bone and suspected torn ligament. She has to go back for various appointments next week. So, that’s just added an extra bit of worry and logistical complication not to mention horrible to see her in pain and hobbling but she’s being very brave.

@Kaz11 well done on finishing rads and completely understand everything you say about how you’re feeling now. I think this must be so common, that now is the time that we stop and think “whoa, what just happened”. I’ve spent most of my treatment so far trying NOT to think about what’s happened/what’s happening - just getting through each day as best I can. And on good days I didn’t want to dwell too much, and on less good days it was more about dealing with the physical than the emotional. Have you had any counselling offered? I’ve had one and trying to book another next week, I didn’t feel needed it earlier in but I do now. Also partly because increasingly find it so hard to really talk to friends about how I feel and what I’m thinking. As you’ve said before, there’s a sort of expectation that we will be punching the air and desperate to rush back to normal life rather than needing time to let head and heart catch up with it all and find ways to heal. By the way, in my view you deserve just as much 👏👏👏 as anyone else on that ward after what you’ve been through and how you’ve managed it.

@Gelbel hope you’ve had a lovely break?

@Rainbow70 how are you doing? Are the sfx from last treatment still dragging? I really hope things start to ease soon.

And finally, I have just noticed a few tiny sprouts of hair regrowth right on the top of my head!! Can’t believe it started to grow back whilst still on the EC, though the nurse yesterday said that’s quite normal. Weirdly, hair on top of head starting to grow back, eyebrows and eyelashes on the slide hour by hour! How does that work? Never mind, I’ll take it - it’s not much, but as the famous supermarket says “every little helps”!!! I’ve got no idea how to make my head look anything near normal, I figure best plan is to wait for more regrowth 🤞 then go pixie cut. My hubby keeps gently saying “you will need to get those straggly bits cut you know”. I guess he has to look at my head more than I do! 😂 

Hope everyone is doing ok today and that whatever plans you have for the weekend involve lots of being kind to yourselves and hopefully lots of relaxation.

Hugs to all

Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon all

@Teagold I hope you managed to get your last EC as planned today and you have planted that flag! 

@Gelbel thanks re your good wishes for today and glad that you are enjoying your break.  Nice to do something “normal” whatever that is these days!  Am not looking forward to shaving again either!  Decided to do the underarms ahead of rads starting - odd though it may sound was quite enjoying the novelty of it being there as it meant hair is growing back.

Well I had final rads today and tbh I feel - well nothing really.  No ceremonial end of treatment like chemo.  It was just here’s a post rads leaflet, I’ll get a follow up call re any sfx on Monday and all the best, cheerio.  Felt like a bit of an anticlimax.  As I said no time to build up rapport with the nurses there as you are in and out quickly where chemo is the long haul as we know so a different relationship altogether with those nurses.  Think there is a bell to ring at the end of treatment.  I heard someone ringing it today and then there was clapping.  I didn’t know where the bell was but would have felt a bit of a fraud only being there for 5 days when the people before and after me that I have seen each day have to go every weekday for 5 and 6 weeks albeit they had different cancers.

I was actually sitting in bed last night thinking has this all really happened to me?  Just feels kind of surreal though all I need to do is look down or in the mirror to see that it most definitely has. I remember the Someone Like Me lady saying someone asked her how she would celebrate post treatment and she said all she wanted to do was lie down.  I kind of feel the same.

Was told today that it is ok to use E45 or Aveeno on the treated area (anything unperfumed) that is an emollient so what I was told by the other nurse was wrong.

@Rainbow70 you asked re the sfx.  They said today I have some of the telltale rads sunburn pinky redness so just to use the cream on it but they thought it wasn’t too bad.  It has felt a bit itchy too.  Also have itchiness on the other side too but that’s down to the dressing where the portacath was removed so will put cream on there too.  Also have felt pretty tired last few days.  Don’t know if that’s down to the treatment/travelling or a combination but have gone to bed after dinner the last few nights and watched things on my ipad but at least my body was resting.  It felt a different kind of tiredness to chemo, almost more a sleepy tiredness if that makes sense.

Still have chemo sfx too.  Eyebrows have come out more since chemo so barely have anything there now and no eyelashes either so my face looks so bare.  Still get a strange taste in my mouth too after certain foods.  Legs have not been so achy this week on rads but have been more tired so maybe going to bed early has helped but not sure.  Hair has also disappeared in other areas I’d rather not talk about if you get my drift but I know it’s still possible to shed hair post chemo/rads.  Thankfully it seems to be filling up a bit more on my head but long way to go before it is even half decent.  Also still have tingling in my feet though my nails are not sore and sensitive now.  They are just half normal colour/half yellowish which will grow out.  And of course I still have spotty skin.

Will need to think seriously now about when I return to work before my catch up with my line manager at the end of next week.  Think I’ll be calling the breast cancer nurse to get a letter from the onco.

So am glad rads now over but not feeling the elation I thought I would.  Still a bit of recovery to do before I could party!  Next stop bone strengthening in a few weeks and starting letrasole on Monday which am nervous about too.

Love and hugs everyone 

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

A quick hello from the wilds of North Somerset to wish @Teagold and @Kaz11 lots of luck and sending buckets of best wishes for your final EC and Rads. Flag at the ready ladies. 🎉

Had a radiographer call me today re the process, sfx etc of my rads that start Monday. She said I can use E45, Dr Organics vitamin E, unscented Aveeno cream on rads site. Just what I've been using post surgery.

My (mattress induced) seroma has gone down, so if I've changed out of the tolerances they will have to recalibrate the treatment. It will only be delayed by a day or two as they will remeasure on Monday. Fingers crossed.

Enjoying our time away. Will update you when we get home. Although I am not impressed that I'm going to have to start shaving my legs again. 😠

Love and hugs to everyone. 🤗

AnGELa x

Rainbow70
Member

Re: February 2021 Chemo Starters

Morning ladies 

@Kaz11  thinking of you today for your last  radiotherapy session, another flag to go at the top of the mountain.  @Teagold  Thinking of you today , wow your last EC treatment . Get that flag ready too.

@Kaz11 will be interesting to see how your skin reacts to the radiotherapy . Have you experienced any different side effects yet from the radiotherapy yet on top of the paclitaxal side effects you are also still dealing  with?  it does sound like a very quick turn around with the radiotherapy, thanks for explaining how it all works as really helps with what to expect . 

it’s interesting your oncologist mentioned been immunosuppressed for 3 months , and nurse mentioning not to plan phased return until after  a month after rads . We don’t know how long  side effects are going to last do we . I’m going to bear that in mind when discuss planning work with manager …. Carry on wfh for at least another 3 months .  This week I’ve still got cardboard taste to mouth , also feet / hands tingling more this week despite not having treatment Monday .   Still having joint ache / burning to upper half of body but it’s not as much  now comes in waves . The nurse on the unit said chemo keeps on working for a while after finishing depending on which chemo you have ! Has anyone been told this ? 
  
Sending love to everyone 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Sorry @Teagold forgot to say fingers crossed you get your last EC on Friday.  That will be a great milestone.  That was by far the worst part for me.  The taxol wasn’t great but it was better than the EC so that would be a massive tick for you to have it over with.

Kaz11 x

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon ladies

That’s me home after completing number 3 of 5 radiotherapy sessions.

I was very nervous on Monday for the first one as didn’t know what to expect and different hospital so needless to say was desperate for the loo when I arrived despite not drinking much before I left!  Am also using the local cancer support group’s transport service which is the best way to get to this hospital where parking is awful, but get a bit anxious about it each day as a different driver each time and have to make polite conversation.  They have all been nice though and are going a more direct way which is quicker than the first time I had my planning meeting and it felt like forever to get there.

The radiotherapy itself has been very quick.  They line you up on the bed thing and talk lots of numbers to each other.  I seem to get an xray each time then the machine moves round.  It is a big circular device so it moves over me before it takes its position on my left to point the rays at my right side.  It is nowhere near my face so I don’t feel claustrophobic like being in a scanner.  It’s over in a couple of minutes then I get dressed and go.  Feels very production line-esque so don’t get the chance to build up any kind of rapport with the radiographers/nurses.  It’s pretty much confirm DOB and address, kit off, lie on the hard bed, they shuffle you into position with hands over head, machines do the needful then it’s cheerio as they wipe down the bed for the next person.  You don’t feel anything but it will be interesting to see if there is any skin reaction by Friday.  
Like you @Rainbow70 I now have my meds too so will start the letrasole on Monday.  Onco said to start 3-4 weeks after end of chemo.  Tomorrow will be 3 weeks so thought I may as well start at the beginning of the week on Monday.

Felt tired today but not sure if it is rads related, chemo related or just general.  Been emotional too.  Quite teary the past few days on and off or totes emosh as the young ones say!  Think it’s everything coming out now.  Didn’t cry much after op or chemo.  Think i just felt I had to get through it but now things are coming to an end maybe have more time to reflect on what I’ve been through so sometimes it’s like a tap and the tears flow big time.

@Rainbow70 my rads planning meeting was the day before my last chemo and the rads started on Monday which was 2 and a half weeks after my chemo finished so there was a bit of a gap between the two treatments.

@Teagold am so the same re the puffy face in addition to the spots.  As we keep saying it’s the gift which keeps on giving.  As if it’s not bad enough losing eyelashes and eyebrows on top of the main hair loss now my skin is rebelling too.  When am I ever going to look anything like my old self - I miss her! 😢

I can imagine how tiring all the zoom meetings must be.  Like you I am a bit concerned about work in the long term as my job involves a bit of travelling around at times and onco says I have not to do this for 6 months so not sure how well that will go down.  Think I will need to get a letter from her to say so.  She also said my immune system could still be compromised for up to 3 months so I think I may have to wfh during that time.  Will need to think very soon about when I start a phased return.  Nurse said I should not go back until a month after rads.  It’s difficult to know what’s for the best as some days am more tired than others.

Anyway think I’ve been banging on long enough in this post!

love and hugs

Kaz11x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Teagold  Thankyou for your thoughts, I don’t think it’s sunk in yet that I planted the flag !. With the weekly pax towards the end I felt like I didn’t really have any days that I felt good . Fatigued / achy and awful taste in mouth. I have an ulcer on my tongue at present 🙄 So was relieved I wasn’t getting topped up on Monday ! Instead on Monday we went for a lovely walk in the afternoon also had a suprise delivery from interflora 💕which made me cry ! 
I think we are all doing amazing the fact that we are managing to do a little bit of work when we feel up to it . Your right it is very tiring and some days we just don’t know what our emotions are going to be like do we . I use the same as @Kaz11 ka brow from benefit for brows it is good .
wow last EC in Friday , when will you get your bloods done ? I felt the same worrying about bloods results. How have you been feeling since last EC . After my bilateral mamoplasty they  gave me a sick note for 4 weeks on the ward . Had drains removed a few days after and then a wound check week later . Was much better when drains were removed as had one each side , I had a bag across my body to place them in which really helped. 

@Kaz11  how are you feeling with radiotherapy ?  I wonder how long the aches will last ? I’ve just had a text to say my Tamoxifen prescription will be ready bet end of the week . I’m getting a blood test done on Monday to check my eostrogen levels . I’ve asked for the blood test as want to know my baseline level before start it . I’m going to start it next week. I have my radiotherapy appointment next Thursday which will be two weeks after finishing chemo ! Consultant said he wanted me to have 4 weeks to recover from chemo , which only leaves two weeks from appt not sure how soon I’ll be starting radio ? 

Love to everyone -looks a lovely sunny day 

🌈xx

Teagold
Member

Re: February 2021 Chemo Starters

Hi ladies,

@Rainbow70 congrats to you on planting your flag! How have you been since last treatment?

@Kaz11 - been thinking of you, how have the first couple of rads sessions been? Re skin issues - v sympathetic as at various points during chemo I’ve had nasty breakouts so as if the hair loss and puffy face wasn’t enough to get me down along came spots! I was told hormone related as hormones likely to be all over the place but tbh it “felt” more like a reaction to the toxicity. I hope yours clears up soon. Thanks for eyebrow pencil tips - I’m off to Superdrug later to see what I can find but failing that will do some online browsing. And thanks again for your cheering words about my “moaning” - made me feel better, you always know just the right thing to say! 🤗 

It’s interesting to see what everyone is doing re work. I’ve been dipping in and out just keeping up on a couple of projects and keeping in touch. It’s by no means a formal arrangement but I reckon I’ve probably done half a day per week since diagnosis - sometimes more. Haven’t had the energy to do more and luckily they’ve been very supportive. So much of my job involves video meetings (everyone still mostly wfh) and I’ve found them really tiring - maybe the steroids making me extra sensitive to light/sound, so even doing one or two meetings has been quite sapping. I still feel bad that I’m not doing more and worry about how it might impact my role long term. I’m assuming I’ll need to be completely out of action post-surgery and then will have to see what rads plan is.

Last EC due on Friday. I’m not letting myself believe it will happen, convinced that my bloods won’t be up to it and it’ll get delayed. But also need to get organised and get something for all the lovely nurses as a thank you just in case it does go ahead! Will head down to M&S and see if I can get some nice tins of biccies and chocolate to put together a little goodie box.

Hope everyone is doing ok this week.

Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

What a great shout re the sunglasses for hiding the lack of brows/eyelashes will definitely be doing that now - thank you!

Glad it’s not just me re the breakouts.  I thought it may actually be wearing the mask which was making it worse but am sure it is hormone related as I had it before.  With me it tends to come out under my nose and on my chin.  That’s where I had it pre BC although it looks worse now.  I got cream from the doc before but she said it would never get rid of it completely which was the case.  The cream cleared it up at the time but then it kept coming back.  Had no issues with breakouts in my teens/20s but now have in my 50s - mad! 🙈

Re the aches it is mainly my legs.  Feel like an old woman when I get out of bed as very stiff but better when I get moving.  Pre BC it was my hip joints which ached but now definitely the legs!

love and hugs

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 I imagine the travelling every afternoon will add to your tiredness then . I’m with you also regarding breakouts to the face . Grateful to be wearing the mask outdoors to be honest to hide it , even better when can wear sunglasses which hide bare eyes / brows 🙄. Do you just have aches to your Iegs or anywhere else ? My legs aren’t to bad it’s just the top of my body / joints that ache ! 
will let you know how I get on doing the extra morning , I usually do around 3 hrs each morning . 

lots of love 

🌈xx

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

Yes my appointments are the same time in the afternoon each day this week so I am going to aim to do an hour or so of work each morning before I go as it is nearly an hours journey for me to the hospital.  So pretty much the whole afternoon is gone between the journeys and treatment.  I have been splitting the 7 hours of my working day over several days so have not had a full day at my computer yet.  That’s interesting though that you have been doing 3 mornings.  Let me know how you get on with the extra one.

The nurse doing the treatment today said it would likely be the end of the week I will notice any reaction to the radiotherapy so will have to wait and see.  I am just there for 5 sessions Monday-Friday this week.

Not sure if it is the hormones (or lack of) but having had clear skin on my face albeit dry during chemo, I now have breakouts on my face like I used to before BC but more extensive so I now look like I have teenage acne.  Happy days!!!

love and hugs to everyone.

(Spotty) Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone hope you are all doing ok 

well done @Kaz11 first radiotherapy completed and thanks for the heads up about the cream . Are you appointments around the same time each day ? Regarding work during weekly treatment I worked three mornings , it was my choice to do an extra morning this week so will see how it goes . My usual hours are full time , my manager and Dr I work with have been very supportive and are grateful I am still wanting to do some work.  However some mornings I have had to really push my self to log on. I guess we will have to see what side effects radiotherapy brings us ! Are you still working this week during your radiotherapy ? 

Sending love to everyone 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi all

Just wanted to give you all a heads up re radiotherapy.  I have been using E45 on my scar since surgery as I was advised.  I didn’t put any on today as the booklet I got from the hospital about radiotherapy treatment said not to use lotions of creams.  I mentioned this to the nurse that I had not used any cream today and she advised against using E45 during radiotherapy treatment.  Instead she gave me a cream called Zerobase to use.

Anyway just wanted to let you know so if you are getting radiotherapy don’t stock up on E45 to use during it as I was advised today that it’s counterproductive.  Hope that helps.

Number one session done today, 4 to go.

Take care everyone.

Kaz11x

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Rainbow70 well done you on completing the chemo and planting that flag - go you!  That’s fantastic.

Totally get the cumulative effects of all the chemo though, that’s exactly how I felt - jnitial elation about the chemo being over then feeling gubbed as a result of the sfx!

I am interested what you say about working 4 mornings.  Have you done that throughout or is it part of a phased return?  I have been doing one day a week but have been splitting the hours over several days.  Working on non time sensitive stuff so there is no pressure but the return to work chat is looming and not quite sure the best thing to do re a phased return as don’t know how I will feel.  Onco and nurses say only I know how I am feeling but am just not sure how long the phased return should be and then pay (or the lack of) will come into it too as my 6 months is coming to an end soon and after that the pay stops.  Would be good to know if anyone else has done/is doing a phased return.  One nurse said I should wait for a month after rads before going back on a phased return.

I was back at M&S today for some goodies but nowhere else so far.  Covid cases increasing a lot in my area particularly in the schools.  Now getting paranoid about friends coming to the house even outside in case they have been out and about at restaurants etc which a lot of them have.  If they then get a track and trace that would affect me if they have visited me prior and I just want to get this treatment done now.  Only a couple of my friends seem to think about what they have done/where they have been before thinking about visiting.

@Teagold am so glad the appointment with your surgeon went well.  Makes all the difference in the world when they have a good bedside manner.  It instantly makes you feel more comfortable as opposed to the brusque approach you sometimes get.  They do this day in and day out but we don’t so it’s good when they are so nice.  I felt like that with my surgeon too.  Just felt we gelled straight away and he explained things so well.

Don’t ever apologise for moaning!  We all understand and that’s what’s so good about sharing on this forum as we all get it.  Think about what we are all going through.  You have every right to moan.  We are all on an emotional rollercoaster and it’s hard.  I feel like I go up and down like a yo-yo.  One day I am fine and the next I am so tired, achy legs and just want to cry so remember you are not alone in how you are feeling.  As I think I said one of the nurses said not to give myself a hard time for feeling upset as we have all had a kicking both physically and emotionally.

Re eyebrows I use Benefit KA-BROW.  It is like a gel eyeliner consistency and it comes with its own wee brush in the top of the pot so you can build up the colour and have it as light or as dark as you want.  It’s easy to apply.

Anyway tiredness kicking in as usual so am off to bed.

love and hugs

Kaz11x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

Well I planted the flag at the top of the mountain last Monday … Thank you  all for your kind wishes . Hubby came to meet me from the unit so was nice to walk out together . Since monday I’ve felt so tired and achy . Definitely feeling the cumulative effect of the weekly treatments. Worked  Thursday / Friday morning  last week and doing four mornings this week so will see how it goes ! Have a weeks annual leave w.c 28th June so have booked a couple of nights away . 

 @Kaz11 well done having port removed and hope tomorrrow goes ok for your first radiotherapy. Have you managed to get out any more to the shops ?

@Teagold so pleased your appointment went well and hopefully you will get date through . Not long to go until your last chemo . Ive just been using benefit eye brow powder on my non existent brows , have one eyelash on each eye lid! Grateful to wear sunglasses to hide bare eyes ! . You don’t need to  feel bad for moaning we are all going through this together.

@Gelbel enjoy your break away! 
sam have you had your break away yet ?

@hopeful1974 hope you are doing ok on your new treatment regime. @Leftygirl hope you are doing ok ?

love to everyone 

🌈xx

 

Teagold
Member

Re: February 2021 Chemo Starters

Aw thanks @Kaz11 / @Gelbel - it really does make a difference to hear from you and know that someone else is going through the same thing. I think there’s a window each cycle where I feel particularly downbeat and it’s probably one of the side effects, I feel bad for moaning and actually now it’s passing off a bit I’ve decided that I need to experiment a bit more with makeup and headscarves etc which I haven’t done much of as I’ve been hiding under baseball caps and hardly seeing anyone. I’m hoping that in the time between chemo and surgery I might get out a bit more so feels like the right time. Any suggestions for good eyebrow pencils especially welcome! I know there are some further down the thread but seems like a long time ago.

My appointment with surgeon was good - she is LOVELY. When she got her tape measure out on me and then showed me photos of her past work it reminded me of talking to the builder who did our kitchen a few years back 😂 - but in a strangely calming and reassuring way, as she made me feel like she knows exactly what she’s doing and it’s all in a day’s work etc. I haven’t got a date yet but likely end July or very early August. She also found the right encouraging words about how I’ve handled chemo which made me feel better, and the breast nurse is really lovely to and has given me some info about bras etc so I feel like I’m starting to get my head round it all a bit more now. So all in all, came away feeling good about it. 

Hope everyone having a lovely weekend, @Gelbel hope you have an amazing break.

Big hugs

Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Have a fantastic time @Gelbel you deserve it.

love and hugs

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

@Teagold 100% agree with @Kaz11.  I too hope your appointment went well. 

Silver fluff! 🤣🤣🤣 That's me - it's getting greyer and it's very slightly curling around where my ears join my head. 😲 Some days I could crawl up to bed at 19:00 - I force myself to last to 20:00.

Away tomorrow. 🤩👏

Love and hugs to you all. 🤗

AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

Good luck with the surgeon appointment today and let us know how you get on.  I have a notebook which I take with me every time I go to the hospital for any appointment be it chemo or whatever with a list of questions in it.  It helps me to write it all down and then I can refer back to what has been said.  Think there is information overload with all this at times and it can feel overwhelming never mind with the drugs making the foggy brain worse so don’t feel bad about writing things down it makes total sense to do that. It’s hard to take everything in they are saying at the time.

With you all the way re how you look in the mirror I am exactly the same.  I have photos on my phone of me pre chemo and then I see me now and feel like I am a shadow of my former self.  Always had my hair coloured as my natural colour was brownish and I started getting greys in my 20s.  Now all I see in the mirror is silver fluff which makes me look ancient and does nothing for my self esteem.  I didn’t shave my head when my hair started falling out so I kept the longer strands which had hung in there.  However when I washed my hair the other day I ended up with a couple of knots in the longer strands which wouldn’t detangle and some came out again so that’s why the nurse recommended cutting them but it was only the ends she took off.  Think she was a hairdresser in a past life so it was easier for her to cut it at the back than me trying.  I got a booklet from one of the nurses which said you can still expect some hair shedding post chemo - just great!

 I do feel like sfx are going like indigestion and upset tum but new ones have appeared since chemo finished like the sensitive fingernails which has now spread to my toes and some days the tiredness is worse than others.  Like you eyelashes and eyebrows barely there - I think more so post chemo so my eyes watering now which they didn’t before.  Cheeks also make me look like a hamster!

Anyway didn’t mean to make this all about me.  Just wanted you to know you are not alone in feeling the way you are and it’s ok to feel upset about it.  I was told at the hospital it’s fine to cry because I have been through so much and so have you.  You are strong and will get through this.  We all understand.  Think it’s hard too as now chemo done and rads start next week my friends think everything is dinky doo and I should be normal now but it’s not that simple especially when it comes to appearance.

Sending massive hugs.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

Congrats on port removal, that’s a big milestone. Can completely imagine it feeling quite emotional. Hope it’s feeling ok and not too sore? I’d be an “80s girl” too on the music but my memory is so rubbish at the moment I don’t know that I’d be able to name many songs 😂. It sounds like your team at the hospital are so lovely, and glad that they’ve been able to reassure you on side effects etc - also v kind to trim your hair, I have to confess I haven’t got the first idea what I’m going to do about mine as hopefully at some point it’ll start to grow but I’ve still got longer strands round the front back and sides so not sure how to get it tidied up and almost too embarrassed to go to the hairdresser (I know that sounds ridiculous). In fact generally the past few days the way I look has been getting me down - what with the hair, the disappearing eyebrows and eyelashes, the puffy steroid face and feeling quite bloated and round. I don’t mean to sound vain, I’ve never been a particularly glam specimen or very “girly”, but I just feel like I’ve been ravaged and when I look in the mirror it’s hard to see much of the old me. If people come to the door unexpectedly I get terribly self conscious. I think it’s all part and parcel of the drugs side effects which can make me feel a bit blue at times so hopefully next week it’ll pass off and I’ll stop being such a whingebag. 
Surgeon appointment today - feeling apprehensive as it all becomes more real but also I’m ready to get a date in the diary and a clear plan for the next stage of treatment. I feel like there are so many questions I should be asking but feeling a bit foggy-headed so will have to write everything down before I go.

Hope everyone is doing ok today. Rain is coming down in torrents here but it’s quite nice after such a hot spell, feels refreshing.

Love to all

Tg xx 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning all and thanks for your message @Teagold 

Glad to hear things seem to be going well but totally understand your anxiety about things and worrying about what you are going to be told by the onco etc.  I feel a bit the same as the nearer I get to the end of treatment and my check up with onco early August am worrying about what I am going to be told even although I know surgery took the bad stuff away and chemo etc was my insurance policy.  Me being me always worries about the what ifs so totally get where you are coming from.

I was the same re reconstruction in that an implant was my only option.  May have already mentioned that mine is an expander implant so I had several jnflations prior to chemo starting.  There is a port under my skin and the fluid to inflate goes in via there - just like getting an injection really.  Next appointment with plastic surgeon is a check up in November so will see if I feel like more inflations then as it’s not currently at capacity.  
Also like you I was an E cup originally but think my remaining original boob has shrunk a bit.  They want to reduce it so it is more the size of the new one but I am not keen at the moment.

Was back at the hospital yesterday for my portacath removal.  Not that I look forward to a hospital visit but it was nice to see the nurses again and get much needed reassurance about my sfx.  The nails on my right hand particularly have discoloured a bit.  They look like I have a nicotine habit however I was told that the nail beds look healthy and the discolouration will grow out although I may get peeling/flaking.  My hands seem to be getting better but I have flaking skin on them too.  I was also told that it was normal to feel tearful which I am getting off and on as I have experienced a massive life event and basically my body has had a kicking both physically and emotionally.  I was told to be kind to myself and not worry about crying.  Eyes also watering generally as eyelashes non existent!

Am a bit tender today where the portacath was removed but that’s to be expected.  Process was fine.  Just felt the needles when the local anaesthetic was going in.  The nurse said to me he was going to play music and I looked like I would be an 80s gal (not sure if that was a compliment or not!) but he was spot on.  We chatted throughout the procedure with me naming the artists and songs although he had me stumped with “Hole in my Shoe” - recognised the song but couldn’t get the artist so I had to give in and he told me it was Neil from The Young Ones (was never a favourite programme of mine anyway) but I knew the actor’s real name and he didn’t so bonus points for me!

After the procedure as usual I felt tearful (quelle surprise!) as it’s another thing ticked off the list.  One of the nurses also cut the ends of my old hair off at the back as they are still tangling when I wash it so better to let the new strands come through and have it a more uniform length at the back.

Next step is rads on Monday for 5 days.  Have been told I am getting 3 weeks worth in 5 days so it will be more concentrated.  This is to save on travelling up and down to the hospital for so many weeks.  Not looking forward to it at all.  I know it will be nothing like the chemo but am dreading how tired it is going to make me feel as I already am tired with my legs in particular tired and feeling at times like I have growing pains.  Am told this is all normal but felt a bit deflated when I was told it will be months before I feel “normal” again.  
After rads at the different hospital it’s back to the usual one for bone strengthening drug on 22 July.

Anyway sorry for this long winded post.

 I hope everyone else is ok.  @Gelbel enjoy your break and @CrazyCatLady I hope you had a lovely time with your family.  Like @Teagold my head can be a bit mush at times so love to @Rainbow70  and @hopeful1974 too and @Leftygurl I hope things are better with you.

love and hugs

Kaz11 x

Teagold
Member

Re: February 2021 Chemo Starters

Hi girls, I’ve just caught up with all your posts and this has REALLY cheered me up as I’m feeling rubbish and a bit sorry for myself today. Lovely to see your photos @Gelbel and Sam, and to hear what everyone has been up to. 

I’ve got one more EC to go next Friday. Third one went down ok and no transfusion, as usual the nasty “hangover” feeling has come on since stopping steroids so yesterday was grim, not helped by the heat! As well as the physical side effects I increasingly find I get a bit of an emotional crash - so, was really quite jolly last week and had a couple of lovely lunches out with old mates etc but this week I’m back in “snotty mess” territory 😂. But I’m sure I’ll perk up at the beginning of next week if it follows same pattern as before.

I spoke to my oncologist last week re scan results, he just said all still shows good response. I was hoping he might say “all gone!” like your doc did Sam, but I was being a bit over optimistic there and at that stage still had two ECs to go. I’m anxious about the surgery and what they might find, just hoping that the scans are accurate and that there really is a significant response to chemo going on in there. I’ll have another MRI/ultrasound before my op. Seeing my surgeon tomorrow and hope to lock down the plan for surgery, dates etc. I’m fairly sure that I’m going for the bilateral mx and have been told implants are my only option for reconstruction. In a way I’m glad to have had that decision made for me, but the plastic surgeon did say if I want to come back in a year and have some other kind of reconstruction that’s possible, he said I’ll need to put on some weight which made me laugh as I’ve spent most of my life trying to lose weight or at least stay stable. I think it’s because I’m quite big-boobed naturally (E cup) so perhaps everyone assumes I’ll want to stay the same size which honestly I don’t think I do, or certainly won’t be disappointed to be smaller.

I’m really interested to hear about everyone’s plans for rads, I’ve no idea yet what mine will be but it’s good if it can be condensed to stop lots of travelling back and forth, I’ve heard of some people going in every day for six weeks which must be so tiring. 

@Kaz11 hope you’re doing ok - can completely understand what you meant about feeling a bit lost after the last chemo because although it’s not pleasant treatment, the routine becomes somewhat soothing and it’s comforting to be looked after by nurses who get to know you. I’m sure I will feel the same, a bit “cut adrift” almost. 

@Leftygurl - how are you? Been thinking about you and hoping things are now settling down. Big hugs to you xx

@CrazyCatLady - hope you had a lovely time with the grandkids and that everyone enjoyed the paddling pool! 

@Rainbow70 hope everything went ok on Monday? How are you feeling?

@hopeful1974 - don’t be a stranger! I really hope everything goes ok for you with the TCHP. Thank you for encouraging words about how it feels after a three month break - I’m at that stage where I can’t imagine ever feeling “normal” again, and also your post-surgery posts have really helped me feel more positive about that stage. 


@Gelbel is it next week you’re off? Will be so lovely to see the family after such a long time. I hope you have a fab time. 

I’m sure I’ve forgotten loads of things I was going to say in reply to everyone’s lovely posts because my head is so fuzzy - so pls forgive and big hugs to all.

Tg xx 

hopeful1974
Member

Re: February 2021 Chemo Starters

I’d just like to say that you are all amazing and inspirational! I wish you all the very best as you move forward. I intend to keep checking this thread but will be more active on the June 2021 Chemo Starters one as there are a couple of people on there who are on the same regime as me. I am having the first of six TCHP (2 chemo drugs and 2 targeted therapy drugs) tomorrow. I am feeling great today so can’t really imagine feeling bad again! I would like to encourage you all that I have been amazed at how well I have recovered from the chemo. Most effects have now past (3 months on) including some quite thick hair growth! Of course I am about to lose it all again but that’s because of the treatment path I chose. My energy has been more or less back to normal (perhaps still a little more tired) and I have driven two hours to stay with my sister as well as meeting friends in London at the weekend. I have been on a real high so hoping that these memories will sustain me for the tougher days ahead. 

Lots of love and hugs to you all. Siân xxx

 

Gelbel
Member

Re: February 2021 Chemo Starters

So glad you had a good outing @Kaz11. Philly on crackers sounds wonderful.

Not long home from radiotherapy planning appointment. I'm going to have auxiliary rads too which increases the chances of lymphoedema but I need it for a better outcome.

I'm having 15 sessions from Monday 28 June. First appointment is 9:45, I don't have the others yet - hoping they are all around the same time. 

I felt a bit rushed - didn't really have the chance to ask Qs about looking after my skin but I found the leaflet Breast Cancer Now does which helps. Dumb Q - any suggestions of an emollient cream? And does anyone know a non-greasy one? Is E45 one? I know my local Home Bargains has buckets of that for next nothing. I know I can ask when I have my actual appointment but I want to be prepared.

I have a seroma... thanks to that mattress humping. #NaughtyGel. The head measurer did ask if I'd had an inplant before they could see the seroma. She also said my scar is very tidy. I'm proud of that because I've worked hard on it as I get bad hypertrophic scarring.

Ended up speaking to GP as temp went up last night and I felt rough with a bit of an earache and sore throat. I've not felt 100% since that 2nd jab. He was happy to give me a broad spectrum antibiotic - and they are working already - feel more like me in the past couple of hours. Least I'll be OK for our week away in Sunday.

Hope everyone had a good start to the week.

Love and hugs 🤗

AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi all

Mission accomplished- first trip to the shops in 6 months ticked off the list!  Went to M & S and treated myself to some nice goodies in the food department.  Have the munchies today big time and am eating sweets like there is no tomorrow.  Dipping into some chocolate covered Thorntons toffee a bit too often the past couple of days and that’s one bag of foam lobsters already demolished!

Weather wasn’t as hot up here today so was out for a walk first thing and waited until 4pm before going to M & S.  Turned out to be a great time to go as it was nice and quiet.  Also had Philadelphia cheese on crackers at lunchtime and it tasted normal so hopefully that’s a good sign.

@Rainbow70 that’s typical re the rads clashing with your days away but as you say best to get it out of the way.  Think we all feel that way about getting it over with.  Hopefully you’ll get your planning appointment soon.  I was in and out in about 20 minutes or so.  

Onco wasn’t specific on the date I have to start taking Letrasole.  She said a few weeks so thinking I will start after rads as first session is a week tomorrow.  Will ask the nurses’ advice on this when I am back at the hospital on Wednesday.  Also want to get a steer from them about when to start back at work properly.  Am told the bone strengthening drug which I get on 22nd July will make me feel rubbish for a few days so maybe best to wait until that is out of the way.

Don’t worry about being upset tomorrow, it’s only natural as it’s a massive milestone.  I felt I cried at some point on most of my chemo days tbh!

@Gelbel that’s great re your hair coming back.  Think we are all about the same stage.  Mine is very similar to yours it just has some of the old original strands mixed in.

@CrazyCatLady thanks for the info re the neuropathy sensations.  Will try that with my toes as that’s exactly how mine were feeling too.  As I said previously it’s good to hear that it’s not just me feeling that.  Still getting some tingling in my fingers too but am hoping that will start to subside soon.  Hoping too that some of the tiredness may go a bit as not looking forward to rads tiredness on top of chrmo tiredness and having a double whammy!

love and hugs to all

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

 

@Kaz11 @Hope you got on ok at the shops today and thanks for the tips regarding hair products.  @CrazyCatLady will also look into the lush shampoo bar too . Prob will be tears tomorrow with last chemo, I seem to be an emotional wreck daily at the moment  !! Going to ask if my husband can come in at the end so can walk out together. @Gelbel Wow your hair is really coming on !! Good you have planning appointment tomorrow do you know when you will start radiotherapy and how many sessions ?  I rang about my appointment last week as not heard anything . Got my appointment 1st July .. typical it clashes  with couple of nights we had booked away so have changed our dates as didn’t want to delay any further . Not sure how long will have to wait for planning appt I’m going to ask about this tomorrow see if anyone can find out . Also think I’m going to start tamoxifen before radiotherapy.  
Thanks for the good wishes for tomorrow . 
 Love to everyone 

🌈xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

 

@Kaz11 @Hope you got on ok at the shops today and thanks for the tips regarding hair products.  @CrazyCatLady will also look into the lush shampoo bar too . Prob will be tears tomorrow with last chemo, I seem to be an emotional wreck daily at the moment  !! Going to ask if my husband can come in at the end so can walk out together. @Gelbel @Wow your hair is really coming on !! Good you have planning appointment tomorrow do you know when you will start radiotherapy and how many sessions ?  I rang about my appointment last week as not heard anything . Got my appointment 1st July .. typical it clashes  with couple of nights we had booked away so have changed our dates as didn’t want to delay any further . Not sure how long will have to wait for planning appt I’m going to ask about this tomorrow see if anyone can find out . Also think I’m going to start tamoxifen before radiotherapy.  
Thanks for the good wishes for tomorrow . 
 Love to everyone 

🌈xx

Gelbel
Member

Re: February 2021 Chemo Starters

Just a quickie while I remember... I look like a gone off dog's dinner so cropped some photos of my hair. How much salt and pepper? Too much white on top looks like my hairline is at my ears!

My hairdresser's ordered me some brunette coloured mousse so I can brave the bonce when we're away. Saw a woman yesterday who was obviously chemo hair very, very cropped, growing back (she practically had steroids stamped on her forehead) - she looked stunning. Like you @CrazyCatLady /Sam... I don't mean the steroids effect for you for 1 minute.

Ive signed up for the LGFB online course as I need help with my non existent eyebrows. Not helped that the top of my eye sockets look like very strange ones!

I've got that horrid everything tastes of diluted seawater back. What's that all about? 😢

@Rainbow70 yeah for tomorrow. Another of us flag planting on top the mountain. 👊

@Leftygurl I hope your port wound continues to heal.

Anyway photos. Oh and radiotherapy planning tomorrow.

Love and hugs to you all 🤗

AnGELa x

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CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning @Kaz11 - aww thank you for your lovely comments re my piccies.  Did feel rather nice getting dressed up a bit and putting full makeup on.  Good luck with your M&S trip today....I'd probably go for the early slot as it may be a bit cooler as my wig does make my head sweat but ok for around 2-3 hours (and as today's forecast is scorchio don't think I'd want to be doing it later in the day).

I think I've mentally adjusted to my fluff bonce and don't even think about it now if I'm out and about sans wig/turban - and many delivery drivers have seen me without a cover up (as my daughter has a bit of an online shopping habit lol!). 

I'm starting to use the Lush shampoo bar which is supposed to help invigorate the hair follicals and promote thicker hair growth so time will tell if this works. 

I figure if I'm comfortable with my appearance, why worry about what anyone else thinks, but I do know how difficult it can be if you think that all eyes are on you.  Also think part of it is showing my daughter that it doesn't matter what you look like - and she is now starting to expose some of her old scars (from her teenage self-harming) so she is getting into a better mind set of being comfortable in her own skin again now.  So I'm taking this as a big positive adjustment in the way she sees and feels about herself.

Good luck with your port removal next week and hope it heals well for you and that the last lot of sfx are now on the way out.  I too got a little bit of peripheral neuropathy - started being in my finger tips but last 2 cycles it moved to my toes/ball of my feet.  It does seem to be easing a little to hoping that eventually it may resolve itself.  It's not painful (as I know some people do suffer with badly) but more of a frustration as need to keep wiggling my toes to get the tingle to stop.  I find that when I'm in bed, if I press my feet on the baseboard of the bed, it does seem to help.  May invest in some magnesium cream as this is supposed to help too.

@Rainbow70 - aww thank you too for your lovely comments 🙂  As yet I'm still hanging on to some of my eyebrows but definitely thinning (as are my eyelashes) - I used the It Brow Power from my LGFB pack .  It goes on more like a powder so wasn't heavy or greasy like some brow pencils and there's a spool brush on the other end to blend/shape the brow.  Definitely recommend this as it does look so much more natural than some others and you can get it in Boots.

And thank you for the reassurance about the surgery...got my V pillow already so see how that goes for sleeping on my back.  Hopefully though can go back to my normal side sleeping after a few weeks once I've healed though.

All the very best for your LAST CHEMO DAY on Monday!!!  Hope the nurses give you some extra attention (and you don't blub too much like me and @Gelbel 😁...but if you do, then it's all good too as happy tears are very much allowed at all times xx)  Well done for getting through it...and hope your last lot of sfx will be kind to you xx

@Leftygurl hope you are getting somewhere with your horrid issues with your port wound and things are looking up for you.  And good luck with your last few chemos - won't be long till your last one now xx

@Teagold hope your results are as positive as was hoped for and you've had more chance to weigh up your surgery options.  I'm sure you will come to the right decision for you with all the advice and support you've received xx

@Linda1967 and same to you too with your surgery choices - we just have to go with what feels right for us and with the advice from our surgeons as to all the pros and cons for each option xx

So hope you all can enjoy a restful and relaxing Sunday and make the most of this beautiful weather xx I currently have a toddlers 3 ring paddling pool set up and ready for a little dip later (best £3 spent in the last few days!)

Love to you all xx

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

It sounds like a few of us are in the same boat with the aches and pains and tiredness!  That’s great it is your last chemo on Monday I hope it goes well and that will be another flag on the summit!  Let us know how you get on.

I am using Nioxin System 2 for non coloured hair with progressed thinning.  I got the starter pack which contained shampoo, conditioner and a scalp treatment.  The scalp treatment is a mousse.  I was also advised by the nurses to get the follicle booster which is in a white bottle with purple writing.  You can get these on Amazon and I also got the starter pack on the Look Fantastic website. I am willing to try it if it helps my hair grow back more quickly fingers crossed.

love Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone

Wow @CrazyCatLady  you look amazing . Your eyebrows/eyelashes  look fab !So pleased you are feeling ok after last cycle if EC. I had the same op you are planned for . I was in hospital over night . Managed ok with paracetamol/ibuprofen and  just had to get used to sleeping on my back. How lovely you get to see your grandchildren today .

 @Kaz11 @Gelbel @was thinking of you both Thursday /Friday not having to go for your treatment.  It’s my last one on Monday !! I get what you both are saying about feeling more tired / achy and feel like been hit by a truck !! It seems to my top half of body that aches and like tingles/burning sensation  !! Had bloods done on Friday last hb was 94 so dropping . I can’t help myself every time I ask to look at my bloods results !! Also won’t miss the bruises either to the back of my hands @Gelbel . @Kaz11 @Your shampoo regime sounds good I think I need to look into as hair looks about 5mm in length and very sparse. 
 
sending love to everyone 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

That’s reassuring that it’s not just me feeling this way.  Was so tired the other day I felt like I’d been hit by a truck until I got moving and only did a short walk that day to GP surgery to hand in my Letrasole prescription letter from onco.

I have been using polybalm as recommended by hospital on finger and toenails but the sensitivity only just started prior to last chemo.  I suppose it is the cumulative effect of the chemo - not just 9 Taxol but the 3 EC before that which I sometimes forget.

Thanks for making me feel better and for the heads up re the shops I really appreciate it.

Love Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 - the side effects you describe are mine - perhaps it's not all low potassium. My legs feel quite heavy. Left thumb nail has started peeling a bit. I think the neuropathy feels slightly better today - not been that bad as just tips of fingers affected. My laptops don't recognise my fingerprint at the moment.

I've gone off tea as the milk in it takes off all the time. Ditto a nice cold glass of milk.

Enjoy your shopping - might be worth going towards the end of opening which is what I tend to do on a Sunday. Though TBH first thing Monday is best time of the week.

Kaz11
Member

Re: February 2021 Chemo Starters

Good morning ladies

So lovely to see your posts today was just thinking sbout everyone.

@CrazyCatLady wow Sam you look absolutely brilliant!  Great to see your hair coming back in.  Mine is very similar.  I describe it as quite fluffy at the moment.  As I was scared to shave my head mine is a bit of a mix of the new fluff at the top and the older strands elsewhere.  Using the Nioxin shampoo and follicle booster as advised by the nurses so hoping it does its job. Despite hating the cold cap I think it did make my hair start coming back a bit quicker.

Fabulous news re your surgery too.  You must be extra special having 2 surgeons working on you at the same time!  Seriously though just great that things can be preserved as that will make you feel so much better.  So pleased for you.  
Your wig looks great so glad you were able to go out for a meal.  I am still a bit nervous about that yet especially as I have portacath removal on Wednesday and rads starting week on Monday on 21st so think I will wait until after that.  However I have decided to take the plunge and go to a shop for the first time since December (why am I feeling nervous??). Going to M & S tomorrow as think it will be quieter on a Sunday and get some nice food.  I am such a party animal am I not??!!

@Gelbel I am similar to you in that I have still had some chemo sfx 8 days on from last one. Am feeling more tired than I was especially my legs.  Slightly concerned as the rads make you feel tired too and I already am.  Finger nails also very sensitive and some are sore to touch.  Strsnge sensations in feet too. One of the nurses called yesterday to check in.  She said this is all normal (likely some peripheral neuropathy) and my nails may peel so will just have to wait and see.  I can discuss with them on Wednesday when I am in for portacath procedure.  Certain foods still tasting a bit yuch so hoping that passes soon.

Great you are getting ready for your break with your family which will be lovely.  So what if there are tears.  We have all been through the wringer mentally and physically so it’s better out than in as they say.

Have a great weekend everyone.

love Kaz11 x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Aww thank you @Gelbel and good that your sfx also behaving from the last cycle 🙂 Hope you have the most fantastic time on your break to see your family....blub away 😊

My weight has been behaving oddly too...from 29lbs down at best but packed it on over last few weeks. But overall still got 21lbs off. Definitely think my appetite has returned - not helped by meal out and 2 x takeaways over last week lol 😆.  So looking forward to a Burger King on our travels on Monday...it's kind of a tradition when we go away haha 😅

Have the best weekend and enjoy xx

Love Sam xx

Gelbel
Member

Re: February 2021 Chemo Starters

Wowzers! Sam/@CrazyCatLady you look absolutely amazingly stunning. My hair was like yours around 2 weeks ago. I'll try to remember to take one of mine later.

And what fab news about your surgery - not long now. Time to regain some strength in readiness. I'm so glad work are being supportive - makes a big difference as that's a weight off your mind.

My final side effects were few and far between - I'm suffering more from the low potassium so feel a bit spacey and out of breath if I exert myself. If I see another bit of spinach or strawberry or banana... and I'm drinking orange juice and coconut water like there's no tomorrow. Really can't understand why I've not lost any weight as I've hardly had any 'carb' carbs. It was so lovely to have a 'normal' lazy, wind down for the weekend Friday afternoon and not waking up at 3am with no chance of going back to sleep nor buzzing from steroids today.

Not having bruises on the back of my hand nor in the crease of my elbow is a novelty too!

Have a wonderful weekend. We're packing for going away on 20th for 6 nights to see my family - mega blub time.

Love and hugs. 🤗

AnGELa xx