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February 2021 Chemo Starters

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Aww @Gelbel that is wonderful news that it's all going ahead today.....yippee!!  And yes, lots of tears expected this end today too - it's surprising how emotional it all gets (I shed tears every time I hear someone else ring the bell as I'm so happy for them)!  Glad you're feeling a bit better today too.  Good luck for today and just those last few pesky days to get through once the last treatment is done!!!  And sincerely hoping you get the good results too after your chemo journey xx

I did manage to get my little thank you gifts for my nurses and staff for both the chemo day ward and the Lister Ward where I have my PICC line done (think they definitely deserve something after looking after me so well during my wobble-fests lol)!  Decision on what to get was made on Wednesday when I heard them talking about their 'cookie cupboard' so got 2 large chocolate biccie boxes for both wards - who doesn't like a choccie biccie!

Today is also my mum's 79th birthday plus the anniversary of my only other surgery I had 12 years ago (internal 'downstairs' cyst!).  So this day will also mark another significant milestone (for both of us).  Gonna see if my unit will let my hubby and daughter come in to see me ring that bell...I have afterall bribed them with biscuits lol 🙂  They have done it for others, so hoping they will for me too - they just let them come inside the door and not actually come into the unit. 

And hopefully I can also arrange my PICC line remove today too - couldn't do it on Wednesday as the onco hadn't updated my notes to approve it's removal.  Gotta feeling they'll make me lay down for this one too as can occassionally cause patients to pass out when line removed from the heart lol! 🙂

Wishing you the very best for today and will be thinking of you when I ring that bell!!

WE DID IT 💪🎉 WE ARE WARRIORS, WE ARE SURVIVORS WE ARE FIERCE WOMEN!!

Love and hugs xx

Sam xx

Gelbel
Member

Re: February 2021 Chemo Starters

Thanks @Kaz11 - got tears streaming down my face as it is going to happen. After bloods, i dropped in on the ward to speak to the charge nurse who did my observations and were happy with them. Woke up this am and my temperature is ok... though I'm still not 100%, I'm not far off.

@CrazyCatLady - was telling hubby about your amazing outcome yesterday and was blubbing as I told him.

It's so lovely we're on that final assult together - I know some have a way to go yet but we're doing this.

I'm going to be a mess today. I wonder if this is the reaction to the news I had cancer I never had?I

I've felt so bad I haven't been able to get the thank you gift nor card I planned. I'll have to get and organise when I go for my rads planning.

I'm off cry big style on hubby.

Love to you all.

A very soggy AnGELa xx

Kaz11
Member

Re: February 2021 Chemo Starters

So ladies first and foremost absolutely delighted for you @CrazyCatLady for getting such amazingly brilliant news.  I read your message just as I arrived at the hospital today so that gave me a lift.  Massive hugs to you absolutely fab!

@Gelbel hope you felt a bit better today and fingers crossed you get the chemo.  Will be thinking of you tomorrow.

 I am now pretty burst after today.  My bloods were fine so got chemo 9 of 9!  How good is it to say that.  Was a bit teary on arrival as the nurses had decorated the room I was in and I was so touched.  I also gave them wee gifts and they were all so chuffed it gave me a nice feeling.  They all said they wanted to give me a hug but good old covid meant that was a no go unfortunately.  Such a shame as I so love hugs!

Used the cold cap as I thought I may as well finish what I started.  Turns out the cap I had last week wasn’t working properly and is now in for repair so that explains a lot from last week.  One of the nurses who had not seen me for 2 weeks said she could see a real difference in my hair.  Long way to go before it is even half decent but it’s reassuring to see it coming back in albeit so silver it makes me look about 70 instead of 55 ?.

So the flag is now planted in the ground after climbing all those mountains @Gelbel .  Your words really boosted me and now it’s your turn.  Go girl tomorrow- one final push and you are over the chemo finishing line even if like me if felt more like a crawl.  The same goes for everyone else - you are getting there with the chemo.  Go us!  What a journey chemo has been.  Has felt like a marathon.  In February the 

Got other appointments today so back on 16 June to get portacath removed, then rads 21-25 June.  Have to expect a lot of tiredness after that.  Got prescription for Letrasole to start after rads (to take for 7 years letter says) - jeez.  I knew it was long but seeing it in black and white caused a sharp intake of breath!  Have then to fit in a dentist appointment ahead of bone strengthening drug - Zometa on 22 July.  Apparently this will make me feel dreadful for a few days (will feel like being back on EC!) but only the first time.  Then onco follow up early August.

Now off to have a bath then bed.

love and hugs

Kaz11 x

 

Gelbel
Member

Re: February 2021 Chemo Starters

Sam, that is such brilliant news. I am chuffed to pieces for you. What an absolute relief. Top news on the Dox being reduced too - good decision if its just a tick box exercise.

I feel a bit better today - in a might make the shower and lie on the sofa kind of way. I'll be going in for bloods later - they called at 20:45 to say I'm having the full set and depending on the results might need a chat with a doctor ahead of tomorrow's planned chemo. Seems I should've been followed up too not just left to it if I felt grottier... and they wonder why my pulse is racing which is causing concern. Hello, I'm quite laid back but didn't tell me what was going on, 5 hour wait for the results, 3 bourbon biscuits is all I ate on Monday, chemo since Feb and no exercise since 23 December (I don't walk and the weather's been so bad the bit I've done is not worth writing home about) is taking it's toll. I've put on 3-4 kg from eating beige as a reaction to steriods.

TBH forgot to mention Monday's might not be my post-chemo whoozy day but I know it's my least well day if that makes sense. 

@Guest user that's great news about the rads planning and appointments being so short - it's just all the travelling time involved. I'm lucky that I'm a 15-20 minute drive away from the hospital so it's not too bad. Hopefully an hour's round trip. What moisturisation regime did they recommend?

Right, I'm off for a dippy egg - starving as I've hardly eaten since Sunday though I've got cravings for tomato sandwiches with salad cream. 

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady I am over the moon for you! That is wonderful news and as you say, makes the sacrifice of going through a very tough chemo worthwhile. The surgery for me really was a good experience so I wish the same for you. Siân xxx

 

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello my lovelies!!

I have had the most fantastic news.....spoke with my onco on Tuesday and my MRI results are in.  Firstly my heart MRI showed improvement (from 55% to 63%!) so was not expecting that!  Secondly, and more importantly, my breast MRI showed NOTHING!!  So was told by onco that my tumors have now GONE!!  YAY!!  I cannot tell you how happy I was - cried me so many happy tears.  All that worrying was for nothing and looks like I have got the PCR result afterall 🙂

Onco also said that optimistic that after surgery they fully expect me to be cancer free with a NED outcome.  As no evidence of lymph involvement, also said that if there were any cancer cells in the nodes, the chemo would have blitzed these too!  Cue dancing in the kitchen and tearful calls to hubster, my mum and my dad 😀

After all that's happened for me on the wonderful TCHP regime, it has actually worked!  Haven't put myself through all of this for nothing - oh and they are reducing my dose for my last docetaxel to keep the neuropathy at bay.

Have also already got my surgery planning appointment booked in for next Friday, so it's all gathering speed - all being well surgery will be 3-4 weeks after.  Then the next anxious stage of waiting for pathology results coming in (but now not going to worry too much as it's all looking very promising!)

And for another chuckle moment - I'll be dropping off my work laptop to one of the other admin people as they are having to isolate and WFH due to her daughter and husband testing positive for covid.  She wanted to know my password but, guess what, completely forgotten it!  Not logged on for around 4 weeks and after having used the laptop almost daily for a year, could only remember the first part of the log on password lol 🙂  So had to message my boss to find out the last bit of the log in - blooming chemo brain d'oh!!

Good luck for tomorrow @Gelbel and hope you are feeling better after have such a rubbish time with your reaction and your bloods are OK for the last one!  We will be ringing that bell together!! And well done too @Kaz11 - whoop whoop to the end of chemo 💪🎉 xx

@Linda1967 I can't offer any advice on recon as I'm just having lumpectomies, but looks like you've got some good advice from the other ladies on here.  Hope you can work you way through all the options and make your decision....it's so confusing when they give you so many choices but I'm sure you will come to the right decision for you.

@Teagold glad you had a 'normal' night out and hope you managed to catch up on your sleep after the joys of the steroids!  Good luck with your plastic surgeon appointment too.

@Rainbow70 good luck for your last 2 chemos....so very nearly there now 🙂

@hopeful1974 wishing you all the best for your TCHP treatment and hope it works as well for you as it has for me! 

Hope you have all been able to enjoy the lovely warm weather and sunshine....even though I lathered up in sunscreen and wearing my floppy hat, and was sitting mainly in the shade, I have still managed to catch the sun (but not too badly!).  Just keep my legs out in the rays so they don't look like hairy white milk bottles lol 🙂

Take care all of you xx

Love Sam xx

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady That is very helpful, thanks Sam. I am hoping that as they are starting on lower doses I may not lose as much. I do find it bizarre that my oncologist has said that TCHP is not as emetic as EC, but if that’s true, then I can take courage as I only lost about 1.5kg with each round of EC. I really was forcing myself to eat but that prevented too much weight loss. 

I will just have to see what happens with the first round, I guess, and my oncologist has promised to review it with me each cycle (I only actually saw him once during the accelerated EC and the other times I saw other oncologists). 

Thanks again for replying. Siân xxx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 - aww don't worry too much about it.  My weight started to come off after diagnosis just before Xmas last year due to stress and worrying so this was all before any treatment started.  So by time my chemo started I was down around 14lb which for me was an absolute bonus as I'm in the obese category (I'm too short for my height!).  Once TCHP started I did lose around another 10lbs by cycle 3 and by end of cycle 4 lost a further 6lbs.  However as cycle 5 was much kinder to me, I seem to be putting all I've lost back on as I have been able to actually eat!  My issues for the first cycles seemed to be the loss of appetite and the lovely chemo trots, so was falling off at a rate of knots.  For me I need to loose the weight - something I've struggled with all my life unfortunately.  Having to take a steroid inhaler for my asthma does not help.

My diet is restricted due to my food allergies too, but carbs, protein, dairy and garden veg are all OK for me - just the healthy salad stuff I have to avoid, so never brilliant for me when I try to loose any weight.  

But as I am larger to start with, then it follows that I can lose more at the beginning as generally I find that people who carry more weight do loose a lot initially and then it settles down.  If you are worried then I'd speak with your team to see if there are high calorific supplements you could take (ie, fortisip or similar).  

So now as I approach my last chemo tomorrow, I am only 4lbs less than when I started chemo!  For me I wish it had stayed off, but I do understand your worries about losing too much as you are obviously already at a low weight.

Be kind to yourself when you start - your appetite is likely to be rubbish so I found things like porridge and 'bland' food was OK (ie, pasta with chicken & sweetcorn was a go-to food).  The conflict was the steroids made me hungry but the loss of taste meant nothing tasted quite right.  You will find what works for you, but please don't worry too much about the weight loss - for me it's back so all being well the same will apply for you too xx

Good luck with it all and please do speak to your team about your concerns, particularly if you have a rough time with the appetite, trots and generally being too tired to eat.  We need to keep our bodies fuelled so we can fight our battles xx

Take care xx

Love Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

Thanks for your good wishes re tomorrow.  Like you I have felt more tired and achy as the  Taxol has gone on.  On Monday night everything was aching - legs, arms, even teeth!  I think that is also a menopause symptom my friend tells me but it’s hard to know if it’s down to that or the chemo.  I tend to think it’s the chemo.

Not long for you to go now either on the Taxol so get the flag ready!

The CT scan seems to be a standard thing.  It was mentioned in the booklet I got with my appointments.  I had to lie on a hard bed (their description not mine) with my hands above my head.  This is where the post surgery exercises helped.  They put pen marks on me and lined me up.  Then I went back and forward a couple of times through the scanner.  The machine was quite noisy.  They then put the tattoo marks on me so that I will be lined up properly for the beams when I get treatment.  It will be a different machine for this that moves round you they said.  Was told treatment around 2 minutes each time and whole process about 12 mins from start to finish each day.  They also said it would be much easier than chemo.

 I was in and out in about 20-25 minutes today.  Just a bit of a round trip for me each day as this hospital is a bit more awkward to get to but that can’t be helped.

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

Not posted for a while but have been catching up on all your posts. I’m going to read through all posts  and reply.  
@Kaz11  will be thinking of you tomorrow for your last chemo and you have done amazing sticking with the cold cap too . Thats good you have had your planning appointment already for your radiotherapy. I’m still waiting for my appointment to come through . Does the CT scan have to be done to line you up for the treatment ? 

@Gelbel sorry to hear you have not felt well.  hope you feel a bit better after a restful day today and tomorrow ready for your last chemo on Friday , will be thinking if you too . Found  your words regarding putting the spear in the ground very moving and so inspiring .. so Thankyou 💕 . Keep resting . 

I had my 7th paclitaxal yesterday so 2 more to go finish on Monday 14 th June .  As weeks go on feeling more tired/achy and very very anxious. Can also relate to the wind issue and bleeding nose .also have put a few pounds back on . Hb dropping was 94 this week so hopefully should last the next 2 weeks was told don’t transfuse unless under 70 !!. 

hope you are all managing to enjoy some of this glorious weather . 
love to you all 

🌈xxx
 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Gelbel and @Teagold thanks so much for your good wishes for tomorrow.  Fingers crossed my bloods are ok for the last one.  As you say excited and a bit nervous too.  Think I was more anxious last week but now just want it over tbh.

@Gelbel that’s horrendous what happened to you on Monday, just dreadful.  Glad it’s s reaction and not an infection but that’s little consolation after what you had to go through. Hope you have just relaxed today watching the tv as planned.  If you can have another day the same tomorrow hopefully you will be ok for number 9 on Friday.  At least the nurse has said that too and she wouldn’t say it if she didn’t think it was possible.  As we all know they don’t sugar coat anything.

 I was at the other hospital today for my radiotherapy planning session.  Was in and out in around 25 minutes.  Felt strange being with different nurses and not my usual hospital gang who I now feel comfortable with.

Had a CT scan and was lined up for the beams during the actual treatment.  Got a bit anxious when I thought the scanner was one of those long tube things that would make me feel claustrophobic but it wasn’t.  It just looked like that from the lying down position. Found the tattooing a bit sore tbh.  I always know when they say to expect a “sharp scratch” that it aint going to be pain free but in the grand scheme it was ok.

@Teagold hope you are feeling a bit better now too.  As we have said so many times before BC/chemo are the gifts which keep on giving.

Take care everyone and all the best for Friday @Gelbel.

Love n hugs

Kaz11 x

Teagold
Member

Re: February 2021 Chemo Starters

@Gelbel - so sorry to hear you’ve been so rough - not the way you wanted to spend your bank hol Monday and a long wait in hosp must have been knackering and frustrating to say the least. Good that you’re feeling a bit better today and hope that continues on upward trend, but do keep taking it VERY easy and get as much rest as you can. Hope you’re ok for Fri - fingers crossed and thinking of you.

@Kaz11 good luck for tomorrow, what a milestone. Will be thinking of you as well. 

As anticipated, as the steroids wear off, feeling pretty rubbish today so not in best frame of mind for plastic surgeon appointment later as all I really want to do is stay on the sofa!

big hugs

tg xx 

 

Gelbel
Member

Re: February 2021 Chemo Starters

Good luck tomorrow @Kaz11 What a box to tick. You must be so excited and a tad nervous too. You've done it though.🎉👊

Mine on Friday hangs in the balance...   I woke up Monday morning feeling like I've been kicked by a donkey and with the most horrendous temperature - we're talking 38/39.  I was 99% sure that it was only a reaction to my covid jab but once paracetamol wouldn't reduce my temperature I called the emergency bleep team and they said to go in. I had a whole host of tests and an armful of blood taken within 30 minutes. 5 hours later 😲 the results came back and I don't have an infection, it is just a reaction.  I didn't get in until nearly midnight on Monday and I've only been out of bed for an hour since. I do feel a tiny bit better today but I'm going to stay lazy and watch the cricket from my pit.

My onc nurse called yesterday  There is no reason I can't have chemo on Friday unless I still feel grotty or my bloods are all over this place. 

Humping mattresses was a mistake! Boy can I feel my MX side chest muscles. Not helping trying to get comfy. And my nose is so blocked and clotty from wearing a mask in aircon for 5 hours.

🤞 for Friday.

 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady, I was just wondering how much weight you lost on TCHP. I weigh 55kg at present and went down to 50kg with three rounds of EC even though I was really forcing myself to eat. I have managed to get back up to 55kg but am really worried about the weight loss on TCHP as I have read that people lose from 25-60lbs on it! Just hoping for a little reassurance. 

Teagold
Member

Re: February 2021 Chemo Starters

Hi @Linda1967 

Lovely to hear from you and thanks for the reassuring words about rads. I can’t offer any advice re recon but just wanted to say I’m also going through process of making decision about surgery and finding it tough. Really helpful @Kaz11 and @Gelbel to hear your experiences. I’m seeing a plastic surgeon this week for more advice on options so hopefully that will help fill in a bit more of the picture.

@Gelbel I also loved the cheering mountaineering post - thank you. Sorry to hear about last week’s chemo and the waiting around etc. Hopefully next week they’ll be slick as anything for your last one. I’m impressed at your mattress heaving - I can barely get lids off jars these days!

@CrazyCatLady - hugs to you for the PIN story, I’m exactly the same, can’t remember anything at the moment. Dates, numbers, all flowing out of my head like water. Hopefully this will ease off the other side of chemo otherwise I’ll be a liability as and when I get back to working properly. 

Managed to get round to friends’ house last night for dinner and stayed out until after 9pm! The most normal thing I’ve done probably since being diagnosed and it felt lovely. Steroids had me awake at 5am but who cares, can always sleep it off later in the garden. 

Hope everyone has a relaxing sunny day.

Tg xxx  

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Linda1967 

I had my mastectomy in December.  There was never any discussion about it being a lumpectomy as they said with the size of the area and margins I wouldn’t have had much left.

Breast surgeon suggested I speak to plastic surgeon to discuss reconstruction options.  They told me I didn’t have enough spare tissue to take from my back or tummy- was surprised as I personally feel I have more than enough spare tummy but that’s what I was told.  I was told that reconstruction after treatment means the skin needs to be stretched and obviously involves another op but if you get it done at the time of the mastectomy it is just one anaesthetic.  My only option for reconstruction was an expander implant and I opted for that as I didn’t want to wake up with nothing.  
I got around 4 inflations before my chemo started so not sure if I can get more now or not - surgeon did tell me at last appointment that it was not yet at capacity. I have a port under my skin where they inject fluid to fill the implant which is just like getting an injection.  This will need to be removed when I am no longer getting inflations.  
I understand that radiotherapy can affect the implant so my understanding is that is why I didn’t get a permanent implant initially as the expander could be replaced with a permanent one if need be.  
My new boob is not the same size as my other one.  As I was an E cup originally they said it was unlikely the implant would get to be the same size.  When I asked why then can people get them bigger on cosmetic procedures (like Katie Price) I was told these are custom made (who knew!) and also these implants are going on top of existing breast tissue whereas a mastectomy obviously removes this.

My surgeon wants to reduce the size of my other boob so they are then more even but I am not keen to have another op to do this.  I am therefore uneven in size but I suppose a lot depends on your starting point size wise. I am still glad I got recon and an implant for my self esteem and also glad I got it done at the time of the mastectomy so I wasn’t facing another op.

Anyway that’s my experience but as @Gelbel  says you need to do what is right for you.  My options were limited as I said but try and get as much info as you can to help with your decision.

 I would certainly recommend the Someone Like Me service.  The lady I speak to is very supportive.  I didn’t speak to her about recon though as I had to make my decision before I used that service.

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Linda1967 

I had a MX in January but didn't have a recon at the time ‐ just as well with the way things turned out. I was told I was a good candidate for a tummy tuck to make a new boob. And I might yet.

My colleague's mum did similar - no recon at the time. I'm not sure of the timescales (sounds like a couple of years after MX. chemo and rads)  but she had a tummy tuck and lippo on the NHS to make her new boob just about when I was having my MX. She is as happy as anything - got her 18 year old flat tummy back, has a good looking bust and was only stiff and achy for a few weeks after her op. I'm led to understand the tummy part of the op was not as painful as expected.

I don't know exactly how long she was in hospital but this was the new year lockdown and it "wasn't a problem her being on her own for a few days".

Second hand information but I hope it helps with your thinking.

Good luck! I'm sure you'll come to the right decision for you. Talk, talk, talk to all the professionals to help with your decision. What about using the someone like me service Breast Cancer Now offers?

Thanks for the radiotherapy advice. Sorry to hear your holiday's been cancelled - something to look forward to.

I need to smother myself in cream tonight - an hour queuing for my 2nd jab in blazing sun earlier. Nice to have some colour but not when not planned, thank goodness I'm not predisposed to burning what with my ANC arm.

Still being so long got me out of cooking the veg and Yorkshires for Sunday dinner... we had a pile of beef sarnies instead! Delish!

And that's why I'm a tummy tuck candidate. 🐳 😉

Enjoy Sunday evening everyone.🤗

Love AnGELa x

Linda1967
Member

Re: February 2021 Chemo Starters

Hi ladies,

Have just been reading through lots of your posts, and thinking what a long way everybody has come since this started. What seemed impossible to begin with, we are all slowly getting through it.

I’ve noticed a few people saying they are wary or anxious about radiotherapy. I wanted to reassure you. I had high-grade DCIS in my other breast last year and had radiotherapy for 3 weeks after surgery, and it was absolutely fine. Other than a little bit of fatigue and irritation (needed to keep the breast moisturised otherwise it felt like a bit of sunburn!) I was absolutely fine. Compared to chemo it’s easy peasy.

I am due to have my mastectomy in a few weeks, and I’m wondering if anybody has any advice. I have been given the choice between a silicone implant for reconstruction, or having fat taken from my tummy to reconstruct my breast. To be honest, I’m pretty horrified by both of these prospects. I really don’t like the idea of a bigger surgery and a much longer hospital stay during these times when none of my family are allowed to come and see me. But I’m also really nervous about the prospect of an implant because I hate the idea of having a foreign object in my body and further surgeries to replace it (as i was told they only last 12-15 years).

This sunny weather is wonderful, and even though I’ve just had to cancel my holiday to Cornwall, I am hoping I will make it there in good health next year.

Hope you’re all enjoying the sunshine. Sending warmth and positivity to you all as always.

Linda x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Gelbel your last post and it's lovely words of positivity and encouragement really resonated (probably with all of us!).  So many times during the chemo journey I've definitely thought I can't do this, but we always pull ourselves up and plough on - this is, afterall, going to help us stay alive!

Think my chemo brain is in full force as I thought it was Friday just gone for your last one, but by the sounds of it, we are both having our last one on Friday 4th June??  Also, did manage to forget my pin number for my debit card last week - knew the numbers but for the life of me could I get them in the right order!!  Nope - so card got blocked but fortunately I'd just got enough cash on me to pay for my shopping (self service thankfully - would have been wanting the ground to swallow me up if I'd been at an actual till!).  Only had cash in my purse as hubster slipped a few notes in as he always worries if I've only got shrapnel lol....so phew!  So I've had to order a new pin no. which has fortunately now arrived!  

Sorry you had a rubbish time on Friday...I see a regular 3 or 4 nurses and all of them are brilliant and we can usually have a bit of a laugh on chemo day.  Always seems to be at least 30-60 mins of waiting when I arrive (after phone call to come in) and just adds that extra time to the day, but I'm normally chatting with the others in the waiting area so that does help the time pass a little easier.  My unit has around 30 patients in at a time in bays of 6 or 4 so always someone to natter with and pass on tips ref surgery, etc.

As for the blue boobs, I'm having 2 x lumpectomies with SNB so they inject a radiative blue dye which highlights the sentinal nodes (1-3 each side I think?), so they can take these out to biospy, hence this stains your boobs around the scars and can last 12 months (sometimes longer!) 🙂  As far as I'm aware, the do the dye during surgery so at least haven't got to have another needle for this!

And as for the fluid intake....I know!  I can normally get in a good 2-2.5lts but they've said try to aim for 3lt a day during rads to keep your body and skin hydrated.  Not sure if it will work as the more I drink, the more visits to the loo so pretty sure anything I take in, comes out again within 15 mins lol! 🙂

Looks like today is going to be a glorious sunny and warm day so once Sunday dinner sorted, having myself a few hours in the garden (whilst hubster finishes off painting the kitchen haha!).  So sun hat, sunscreen and shades at the ready for a couple of hours of lazy napping.

Have a good weekend and hope the woozieness has passed now xx

Love Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Aw @Gelbel 

THANK YOU, THANK YOU, THANK YOU!  

Tears now blinding me but I so appreciate your lovely words and massive boost!  Getting near the end of treatment is such a mix of emotions and during this journey none of us wanted to be on I have varied between feeling strong and as weak as dishwater!  I wrote in my journal last night such a mix of thoughts and how I genuinely feel that a lot of my friends who always say it’s fine when I wobble, would have struggled to do this on their own as I have and during a pandemic! So we all have to give ourselves massive pats on the back for dealing with this during the most challenging time in our history.  GO US!!!

Annoying when your chemo routine out of sync with new nurses.  Think that threw me a bit too on Thursday when the nurse didn’t get the line in first time.  Hopefully we will be back to our usual teams for the final push this week which will help.

 I too probably tend to do too much when people would say I should be resting but things like washing etc still need done and tend to focus my mind on other things than BC.

Hope you get a rest today after your mattress exertions.  It’s sunny here so looking forward to having a relative over for coffee this afternoon and looks like we will be able to go into the garden.

Thank you so much for your lovely words again.  This forum and the lovely ladies on it mean so much to me 💕💕💕

Love and hugs

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Thanks for the rads tips @CrazyCatLady/Sam. Re soft towels, I use microfibre ones -  I got them for the gym as take up little room in my gym bag. I'm using permanently at the moment as they are really good at saying place with a mono boob!

As for 3L, blimey I can do 2.5 quite well, seems a step up. The water bill came yesterday - hubby joked the increase is thanks to all I'm drinking! I've spied massive bottles of E45 and aloe vera in Home Bargains for next to nothing so I'll grab some if them next time I'm in there. 

Blue boobs? Doesn't ring any bells with me when I had my MX. Doh! 🤦‍♀️ The bruises from the wires. Stupid chemo brain.

Why have one hospital when you can have two eh?!!! I didn't find the trace wires as bad as the biopsies. Though mine were little bits of metal left in place. Totally unaware of them. When is your surgery?

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 YOU ARE NOT A FAILURE. YOU ARE AMAZING. GOT IT?! You might have a couple of weeks of chemo offness to come but you have just about done it. Forget the Three Peaks and K2 and Everest and Kilimanjaro rolled into one, you've climbed a mountain bigger than all of them put together and are on the final assault. You can see the top, your flag is in your hand and on Thursday you will spear it in the ground. Then you can slowly come home. 

That journey has started - your BC has done, you have a new boob, your hair is coming back, the chemo has mopped up any stray cells and the radiotherapy will zap any in the area. 

Bloody hell - sorry. That was for you - I'm 😭 as I realise that was also for me. And all you brilliant February ladies (and anyone else dropping in for a read).

My chemo experience felt so impersonal on Friday - a new nurse, brilliant with diluting the steroids but not good at much else, a junior sister and a charge nurse who only bothered  to say the very minimum. Beside starting nearly an hour late, nothing new there, it look 3 hours for an hours dose of Pax thanks to delays hooking me up and off the flushes, the chemo and the second flush.

So better not be like it on Friday - I'll bring my thank you present home!

Quite whoozy today  - might be a need for food and I had a busy day yesterday, including humping our old mattress downstairs and the new one up it on my own.  Hubby's (genuinely bad) back 'went' on Friday. I popped into the pub to see my girlfriends on the way home from rugby - consequently they went mad at me!

Lovely new mattress though! Off for my second vaccine today.

I hope you all feel as good as you can today - or are able to manage your side effects. Enjoy the weather and the long weekend.

Love and hugs 🤗

AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Thanks for your lovely messages @CrazyCatLady  and @Teagold .  I felt better yesterday and even got out a walk with a friend.  It was nice to get the fresh air.  Feel a bit yuch again today though which is my usual Saturday pattern after Thursday chemo.  Bit light headed today so think a wee lie down later may be in order.  Think Thursday was a combination of everything- nervousness about nearing the end of chemo when it felt like it would never come, anxiety about not seeing the nurses and how the radiotherapy will be plus cold cap issues.   Quite a scary thought being in the big bad world again as you say @Teagold .  Like you I have been keeping my social interaction to a minimum due to infection.  Have had a couple of friends in for coffee but little do they know when they are gone I spray the seats they have been sitting on with mega amounts of Zoflora!!! 🙈.  Think I have turned into a germophobe during all this!!!

As you say @CrazyCatLady the radiotherapy should not be so bad.  Onco told me it would be a walk in the park compared to chemo.  As you say need to stay positive but I am a worrier (as am sure we all are with what we have been through) so concerned about side effects like how it could damage my implant, lung (onco said it could leave a mark) and even more tiredness as well as the potential effects on the skin.  Hope the sfx after last chemo won’t last too long either when it will no longer be getting topped up.

Totally understand you being nervous about surgery but I honestly found it easier than the chemo to go through and as you say the little pests will then be OUT!  As the nurse told me “your cancer is now in the bin”.  Felt a bit odd thinking of a part of me being in the bucket but hey ho.  Maybe just as well not seeing the scans too.  Sometimes I think there is such a thing as too much info during all this.

 I also had to go to another hospital on the day of my op to get a nuclear injection so they could trace the lymph.  Then it was a half hour journey to the hospital for my op.  They said the dye was blue and it might come out that colour in my pee but I don’t recall that.  Quite a combo of colours to secrete with the red stuff on EC too!

Will bear in mind the soft towels during radiotherapy as I think patting dry will be the order of the day and will see if they recommend any creams for the skin when I go for my planning appointment on Wednesday.  First tattoos for me at age 55 when they mark the spots for the radiation to go!

@Teagold sorry you are feeling rotten on the EC.  I was the same.  It almost seems cruel that the time you feel your best after it is when you have to go back for another dose but you are getting there.  I found the EC the hardest part.

Will be getting my portacath removed at some point but wondering if I will get another ECG.  Got one pre chemo to check all was ok to get it but hoping they will check how it is after as well to check the chemo has not caused any damage (here’s me worrying again!) but feel the same way as you do about it @Teagold .

Hope you can all enjoy a bit of sun over the weekend.

Take care.

Love and hugs

Kaz11x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Teagold - thanks for your kind words about my MRI results - and yes, your image sounds like the same as mine with lots of bright white showing up.  But it will be what it will be I there's nothing I can do worrying about it!  And you should definitely chase up for your ultrasound - may just be because of the BH that the appointment's not come through yet.

Sorry to hear your 2nd EC left you feeling so ikky but good that you're feeling better now.  And don't worry about catching us up....it does really fly by once it starts, so it won't be that long until you're at the finishing line for chemo 🙂  

Hope you get a good long weekend of rest and relaxation and enjoy getting some lovely sunshine...but don't forget your sunscreen and floppy hat lol 🙂

Take care x

love Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi Sian - aww thank you too for your reassuring words ref the surgery.  Not looking forward to it (or any of the treatments really!) but just gotta get on with it and get it done.  At least after surgery the little blighters will be OUT!!

Hope you manage to enjoy some sunshine this long weekend - rain here first thing but sun now peeking out from the clouds xx

Take care and enjoy some lovely sunshine walks xx

Love Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 0h no sounds like you had a really rough time of it...hopefully today you're be feeling better.  But only 1 more to go so you are almost at that finish line!!  Wonder if your magnesium levels may be low as this was how I felt when I had my wobble-fests??  However, could of course just be chemo side effects which have been building up.  Sorry to hear you've started with the hot flushes - check with your onco if they can prescribe anything for them to make it more managable.  And what a shame about your cold cap issues....sure as the nurses said, as your hair is already starting to grow and only 1 cycle to go, it will be fine.  If not, then you at least gave it your best shot and it will grow back xx

Not sure if I'll ever see my MRI images as onco consult will be by phone on Tuesday....but guess they may bring me in for a 1:1 after my last chemo to go over surgery options.  I'm kinda preparing myself if they do suggest mx for left side (the one with the Her2+/ER+) as I've read up that TCHP isn't always guaranteed to work as well on these type of tumors, so may not get the PCR as he suggested (but may still be OK for the right side as just ER+/PR+).  Also as left nipple is still inverting, I'm guessing there's still something there causing the distortion.  But, I'll just have to be patient (!) and wait and see what comes.  Why do we always think our results will be bad eh?  Gotta try to keep my positive mind set!

However, on the plus side, seems my trust have now rolled out the Phesgo injections - but again won't know whether it's going to be both H&P, just the Herceptin or (if I've still got residual disease) then Kadcyla.

I'm nervous about surgery (only had 1 surgery before which was some 11 years ago)!  Think the thought of the guide wires sounds horrid - about as unpleasant as the biopsies were.  Then gotta travel around 30-45 mins from one hospital to another for the actual surgery so guessing that's going to be quite uncomfy!  Oh and having blue boobs for a while lol 🙂

I'm sure radiotherapy can't be as bad a chemo (although I'll have both sides done) - just been told all the time to drink my 3lts a day and moisturise liberally front and back at least twice daily.  I have got myself some super soft towels to pat myself dry after showering as I was advised not to rub myself dry and also when showering, don't have spray directly onto the area but rather have your back to the spray and just swish water over them with your hands.  Aloe Vere gel will also be on standby in the fridge if it all gets hot and sore.

Hope today is a better day for you and not long now to end of chemo...yay!! 😍

Love Sam xx

Teagold
Member

Re: February 2021 Chemo Starters

Hi girls,

 

@Kaz11 so sorry to hear about your rotten day. How are you feeling now? Makes sense that taking together everything you’re dealing with you feel battered, and the cumulative effects of (almost) a full course of chemo. I hope you slept better last night.

@CrazyCatLady good luck for your MRI results. Can completely identify with the anxiety. When I went for mine a month or so ago I was in bits. I think I’m due another ultrasound in next couple of weeks but haven’t chased it because I get so stressed (I know, that’s bad, I will...). When I went for the last scan, I caught sight of an image from my mammogram on the screen - looked like one of those aerial shots of a very large very brightly lit city at night time - so I looked away sharpish. Nobody has offered to show me my scan images and not sure I’d really want to see. Hope they can reassure you that chemo has done its job after everything you’ve been through.

@hopeful1974 great to hear how well you’ve done since surgery, and congrats on the long walks! I’m tracking your progress as I’m anxious about recovery times etc. Still not sure exactly when my op will be but likely mid summer.

@Gelbel are you done?! Woohoo!! How do you feel? Sounds like you’ve got an awesome team of colleagues around you cheering you to the finish line. I’m so with you on feeling emosh about saying goodbye to the chemo ward - the thought of being released back into the outside world without that regular touch point makes me feel wobbly. And the nurses are just so lovely and somehow manage to make something I once thought would be the worst thing ever into something I’ve come to look forward to.

I’m straggling along in the slow lane watching you all sprint for the finish 😂. Had my 2nd EC yesterday. Came home feel shocking and all I could manage was bath and bed. Worst nausea I’ve had so far so no dinner for me. But tentatively would say feel better this morning, and it was the same last time. On balance the first wasn’t as bad as I feared and this past week (since Monday) I actually felt really good. So seems particularly annoying to be all sprightly heading in on Friday morning and come back feeling SO lousy, but, it is what it is and I’ve just got to get my head down and get through the last two. Had an echocardiogram yesterday “for base line” (seems a bit late for a baseline, treatment 14/16?) and pleased to say that despite all this poison I do still have a heart and it appears to be beating. Also pleased that having been told I would need another transfusion yesterday, blood levels had held up well enough that I didn’t. 

Well I for one will be taking it very easy this weekend and enjoying whatever sun we get from my back garden. Can see the world outside filling up fast - trains are busier each time I go up to hospital, all the bars and cafes round here rammed full and they have been all through the grotty weather so can only imagine it will be bedlam out there this bank hol weekend! We have a pub on the corner of our street and literally stepping over people’s feet/bags/buggies to get past. But also nice to see people out having fun as a reminder that life goes on and though I’m being really cautious about socialising at all still due to infection risk, I’d like to think that one day I’ll be there with a few pals and a glass of wine.

Hope your weekends bring whatever comfort you most desire and big hugs to all.

tg xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Don’t know why my message says “bleep” hoke as I thought I typed black. 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone!

@CrazyCatLady thanks for your lovely message.  I hope you get good results back from your scans.  I must admit that when the breast surgeon showed me my breast scan it meant nothing. Was almost expecting to see a **bleep** hole on it with an arrow pointing to the “bad” area but there was just a lot of white so I couldn’t see anything obvious at all.  The area for me was 65mm (hence the reason for mastectomy as with margins I would have had little left as it was in the bottom half of my breast) which contained 2 lumps and some DCIS.  Was told grade 2 initially but after surgery it was a mix of grade 2 and 3.  I honestly found the surgery much easier than chemo.  Don’t get me wrong I was bricking it beforehand as had never had an op but once i had the anaesthetic the next thing I knew I was waking up again.  I got strong painkillers to take home but barely used them as they contain codeine which can make you constipated.  Certainly know all about that now on the chemo and like you have both imodium for the trots (love your word!) and laxido (🤮🤮🤮) for the bunged up days.  Am sure you will find surgery the same.  They couldn’t take from my back to reconstruct so I got an implant.  Good thing about that was only one would and no drains.

Thanks for the tips re radiotherapy.  Nervous about it and how it will affect me generally and also the implant.  I was not concerned about radio at all as was focused on getting through the worst in my eyes - chemo, but now more nervous about it as I get nearer to it.  I use E45 over my scar each day but will ask about moisturising at my planning meeting on Wednesday.

Bloods were ok yesterday so got chemo 8 but the day didn’t go without it’s issues.  Tummy been aching all week so more visits to loo than normal.  I seem to have a day at the weekend where my bowels have a big empty and go several times.  This also happened on Tuesday this week and more like the trots after about round 4.  Didn’t go at all on Wednesday but had to go at hospital yesterday which is unlike me and was peeing all the time pre treatment.  Couldn’t put my finger on it but felt out of sorts yesterday and off colour.  
When nurse came to do bloods she missed the sweet spot in the portacath so had to insert another line so being stabbed twice was not a good start.  Then I had some flushes (again a bit unusual for during the day so wonder if it was anxiety driven).  Now I am nearing the end of chemo it feels strange as will no longer have the security blanket of the nurses.

Cold cap machine was then playing up.  Nurse had to put coolant in it befors it would start and then we got going.  It also made strange noises and an alarm went off when I had the cap on.  Initial 30 munutes hard as usual but then the ache never settled as it normally does so I felt awful and they agreed to remove it.  Was left with a huge red dent across my forehead which I have never had before so think the whole process wasn’t right yesterday.  Felt like a failure (thoughts jnduced by me not the nurses) as I have endured it each week and felt like I had fallen at the second last hurdle.  As my hair starting to come back they were not concerned.  However they said I looked pale and grey at one point so I had to lie down fully and try to sleep.  They kept checking my obs for the rest of the time but just generally felt weak.  They thought it was a combination of exhaustion, dodgy tum and emotion/anxiety about nearing the end of chemo and trepidation about rads - a genetal “off” day for me as they described it.  Then had flush after flush too.  Took a lot of fluid when I came home but not much to eat as couldn’t face it.  Legs felt they were struggling a bit to carry my body around.  
Anyway slept a decent amount last night so hopefully today is better!  Flushed a lot in night though - I hate the menopause on top all this!

Sorry for the long rant/moan but had to get it off my chest or should I say the 1.5 boobs I have left!

Take care everyone 

Love and hugs

Kaz11 x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady , thanks so much for all that. That is so helpful. I’ll definitely keep a list of all the side effects so that they can be managed effectively. I’d much rather know what sort of things to expect. Ondansetron worked very well for me too after the EC, so I may have that again. My oncologist said I will only be prescribed the steroids for sickness as it is usually not as bad on these drugs as it was on EC, but we will see! 

I wish you all the best for your op. I had a wonderful experience with my operation and the recovery. It was a completely different experience to the chemo and apart from feeling groggy for the first three days post-op, I felt really well in myself and I have bounced back physically really quickly. I can now do 1.5 hr brisk walks again no problem a month on. I’m not looking forward to the chemo preventing me from continuing with that, but hey ho. 

Thanks for your encouraging words - it is great to see you coming out the other side of the treatment. 

Congratulations to all of you who are approaching the end of chemo. It is no mean feat to get through it! (Understatement of the year!)

Love to all, 

Sian xxx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 - hope all went well for your penultimate chemo!!!  Last one next week!!  Isn't it brilliant to be able to say that 🙂  My last one due next Friday (4 June) which is also my mum's birthday.  Like you said, 18 weeks seems like an eternity when you start but can't believe it's now all coming to an end 😃!!  Also @Gelbel good luck for your last one today!!  Hooray to saying farewell to chemo!!!

Good luck with your radiotherapy planning and for your week of rads - tip I had was to start moisturising whole chest, neck and back area a couple of weeks beforehand to get your skin prepared.

My next step is surgery which they've said will be around 4-6 week after last chemo, so early July (then rads 7-8 weeks after that).  I've had my heart and breast MRIs done now so currently on the anxious pacing waiting on results.  Hopefully when I speak to my onco on Tuesday he'll have them in....so hoping that chemo has done it's job, but as I said before, not sure if I can still feel my left lump but caught a view of my breast MRI screen and there was the tell-tale white glow on the image 😞  But if may still have shrunk as started out at 21mm....so fingers crossed.  Just want the 2 little blighters OUT!  Also know still going to be worrying about the SNB results as all indications at the moment are that there isn't any lymph involvement, but won't know for sure until pathology results are in.

So just 7 more days for me till 6/6....can't blooming wait to say goodbye to this stage of the journey. And good luck to those who are also nearing the end.  WE SMASHED IT !! YAY 💪  And if you are just starting the chemo stage, it does fly by really...just take one day at a time xx

Take care you lovely bunch and onwards and upwards to the next steps xxx

Love Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 / Sian - you will be on the same treatment as me!!  TCHP is not the most pleasant but if I can survive it, then so can you!!

We all know how different we can be with side effects, but for me, the first one was the most 'challenging' as I seemed to sort out one issue for another one to pop it's head over the horizon.  I did get the chemo trots so get some Imodium in just in case.  Then the joys of constipation so also rotating between Imodium and Laxido.  Watch out for oral thrush too...first signs for me were the corners of my mouth were sore/cracked and had a sore tongue and then the white patches turned up.  GP prescribed some antifungal tablets which sorted this out quite quickly.  Unfortunately my initial antisickness weren't very effective so GP topped these up with Cyclizine which I could take inbetween my antisickness pills from the chemo unit.  Eventually at Cycle 4 was put onto Ondansatron and these worked brilliantly for me without any top ups needed.  Oh and the acid reflex/indigestion/belching was fairly constant so again put onto Lansaprazol for this (wasn't told to take them all the time though...so now take these for the 5 days post-chemo along with my antisickness).

I have had mildly numb fingers/toes but not painful - just frustrating when trying to fasten a bra or buttons.  I'd say they are more desensitised rather than fully numb (like when you've been out in the snow and the feeling when you come into the warm when they are coming back to life....if that makes sense?).

From Cycle 3 I did start getting the achy joints (mainly knees and lower legs) so stock up on Epsom Salts as these do help ease it.  

Sorry don't want to scare you with my horrid time on it....but once the meds sorted, it's been fine...honest!  The did drop the carboplatin for me after cycle 3 as this wiped me out totally (literally plastered to sofa for 8 days and not able to stand for more than a minute at a time).  This may have been why I had my wobbles during PICC line dressings, but put on magnesium supplements and last 2 dressing changes have been absolutely fine.

I'm 2 weeks after cycle 5 and this one has been a complete breeze!  Just the steroid buzz for 4-5 days but no sickness/nausea or 'digestive' issues.  Have my treatment on a Thursday and on Sunday I was cooking dinner....first time I've been able to do this since starting so felt really rather good.

Tiredness does hit quite hard initially, but as long as I pace myself and nap when needed, it's tolerable. Also tried to do a bit of walking which is supposed to help with the tiredness (which is completely counter-intuitive as you just want to lay down and sleep!).

Did manage this week to do a 'proper' bathroom clean (they do try but it's not to my standards lol!).  Took me longer than it would normally and had to have breaks along the way, but feels like I'm more or less back to normal.  Although next day I was nick-knacked so had a day of doing nothing.  

Hopefully as you will be starting on a lower dose, it won't be too bad for you....just write a daily log of everything so you can let your onco know what's been happening.

Good luck with it all and any other questions, just ask xxx

Take care, love Sam xx

hopeful1974
Member

Re: February 2021 Chemo Starters

I should have added that the Paclitaxel would be fine if I could have it with Herceptin and Pertuzumab, but the NHS does not currently allow this. I really would have preferred Paclitaxel as it seems to be better tolerated by most people I know than Docetaxel. 

I hope everyone has had as good a day as possible. xxx

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady Hi Sam, I’ve just had my meeting with my oncologist to tell me the next part of my plan. I am going to have 6 rounds of Docetaxel, Carboplatin, Herceptin and Pertuzumab. He is going to start me on a reduced dose as I reacted so strongly to the EC last time. I have the option to have Paclitaxel with just Herceptin, but he said that would not be as effective and would give me a much higher chance of local recurrence. After the 6 rounds of TCHP, I’ll continue on with just the H&P until June next year (so a total of a year’s treatment). He has prescribed me a month’s supply of Lorazepam and is happy for me to take that every day if necessary. My plan is just to use it when I need it. I know it helps me through, but I don’t want to take it unless I need to. 

So, all tips as to how to get through the TCHP treatment would be appreciated. He said I may or may not get diarrhoea but would be unlikely to get sickness. 

Many thanks, 

 

Sian xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Thanks so much for the good wishes for tomorrow and the same to you for Friday.

At the beginning 18 weeks sounded like an eternity and I have not found it quick but can’t believe tomorrow is number 8 of the 9 weekly cycles provided my bloods are ok.  Like you I am desperate for it to be over but also nervous.  The nurses have become a wee family to me so there will be tears next week 😢.  One I am close to is in tomorrow but not next week so will be blubbering tomorrow!  As you say I am anxious about losing that support network every week and will be going it alone now.  Such a strange feeling and mix of emotions.  Was also thrown a bit on Monday as got a call to go for my radiotherapy planning appointment next Wednesday which was earlier than I thought.  Made the next part a reality so cue tears as soon as I was off the phone.  I need to attend a different hospital for the radiotherapy so that makes me anxious about a new hospital I am not familiar with, new treatment, nurses etc.  It’s also hellish for parking so using a volunteer service from a local cancer charity for transport so again nervous as going with a stranger so it will be awkward conversation in the car!  Also got my actual radiotherapy appointments in today so it’s Monday 21 June- Friday 25.  Only 5 but more intense as am told they are condensing them now so you are not travelling up and down daily for weeks on end.  Portacath will also need removed at some point and bone strengthening drug to come.  Pills also - think it may be Letrasole as am post menopausal but will see if onco says anything about that tomorrow.  Like you will defo do moving on course.

Hope everyone else ok.  I am very tired and nose bleeding a lot when I blow it.  Indigestion also there a bit and peeling skin on hands particularly at my knuckles.  Hopefully these sfx won’t be long in disappearing post chemo then will have the radio sfx to deal with - happy days!

Love to all

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Good luck tomorrow @Kaz11 - last but one. Wow how fast has it gone?

Dunno about you but I've felt really quite good this week - my whoozy Sunday was only slight, no bloating, not too much parping. Though sleep has been awful as we're in the spare room (only a double bed) as ours is being decorated. And it's at the front of the house and it all seems very noisy.

Had a good chat with my (fave) nurse yesterday when she checked-in with me - I'm getting a bit emosh about that 100% support not being there. She said it will be but not so in my face.  She stressed the Moving on course is there for me and I will be invited after my rads onc follow-up appointment.

My colleagues have put in a call for the first Friday pm after my chemo ends to celebrate. How lovely is that?

How's everyone else doing? Getting excited/nervous about the end of chemo like me?

Love and hugs to you all. 🤗

AnGELa x

Gelbel
Member

Re: February 2021 Chemo Starters

@hopeful1974 Party at yours! That is fab news. You must be so relieved. 🎉

What with @Kaz11 on #7 of 9 (hope it went well), @CrazyCatLady and even me nearing the end of my chemo, things are looking up. 

@Teagold - sounds good for you too. May it stay that way. So with you on the food - all I want (and tend to have) is rubbishy beige carbs. So I've taken to having salad in my sarnies and even eating the odd pear - I hate fruit.

Yes, I will be on Zoledronic acid and Antrazole. I am still moisturising my scar area so I'll take it a bit further. Thanks for the heads up that my Trust might provide - another Q for my list.

Love and hugs to you all. 🤗 We are blooming awesome - to think what we were like in January, scared (some of us scarred!), worried, unknowing etc. To think how far we've come and now, with the odd wobble - but managing them, we're all conquering experts. Go us! 💪

AnGELa xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Lovely to see all your messages over the past few days and catch up on your news.

@hopeful1974 that’s fantastic news re your lymph.  So pleased for you.  What a lift that will give you.  Like you I found the recovery from surgery easier than the chemo but I suppose at that time I didn’t know my treatment plan so was feeling more positive.  Maybe if I’d known then about the chemo I might not have felt so upbeat! 

@CrazyCatLady so sorry to hear about your PICC line issues and your worries about the lumps and bumps.  Sounds like you have had quite a time of it.  Sending big hugs.  Can imagine your mind will be racing so am thinking of you.  Great to hear that you have a spa break booked - well jel as the young ones say!  I have a lovely spa near me which I can go to for the day and they just emailed some offers yesterday so will definitely look into that.

@Gelbel good luck for next Pax tomorrow and big hugs to you @Teagold too.  Hopefully I have covered everyone.
I am not long home after completing Pax 7, now only 2 to go.  The nurses all said they can see a difference in my hair and that it is growing back particularly at the sides.  Will be a while before it looks presentable- baby steps and all that though.  Have stuck with the cold cap so far so am going to see it through to the end.

Onco saw me today so there is going to be a break between chemo and radio for me.  Last chemo scheduled for 3 June all being well and radio likely to start w/c 21 June.  I will be there the week before for my “pre” appointment where they line you up for the radiation and mark you with tiny tattoos.  I will get 5 sessions so one week Monday-Friday.  She said they are condensing the treatment now so 5 intense sessions instead of having to go for 3 weeks.  She mentioned it could leave a mark on one of my lungs but the benefits of the treatment outweigh this.  I do feel there is always some new thing chucked into the mix that I am not expecting and that was it today.  As we have said so many times before it’s the gift that keeps on giving.

Likely to get portacath removed pre radio, an appointment with onco to follow, then radio.  I think they will also ask me to see the dentist at some point ahead of the bone strengthening drug which will happen post radio via IV.  I will also have to take calcium tablets for a month.

BCN also told me today onco will give me letter for GP to get my prescription for my pills which I will start ahead of radio.  Think I am post menopausal though I seem to have skipped peri and the actual thing as was on medication prior to surgery which was probably masking the symptoms.  Likely to be letrasole she said.  Must admit that I had put the pills out of my mind but the nurse told me today I could get sfx like achy joints (I already have a bit of this so not looking forward to years of it).  The Ticking off Breast Cancer lady also mentioned this that it’s not just like taking a wee vitamin pill.  It is I suppose a continuation of the  treatment so am a bit apprehensive about how it is going to make me feel.  Anyway I suppose I have to think that the brutal treatment is nearly over.  There will be relief but I know it is going to feel a bit weird too and there will be tears on the last day.  The BCN told me I am likely to feel a bit lost though I will still have some appointments, procedures, radio and bone strengthening drug to go.

Anyway off to have something light for tea and an early night as been feeling more fatigued this week.

Kaz11 x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Teagold - entirely agree ref being told to prod and poke, but I can't help it lol...think the actual 'texture' of my left breast has completely changed and is more lumpy/bumpy and more squishy.  So perhaps the chemo has changed it's density...I'm holding on to what happened at my last physical exam when they couldn't find the left lump so I had to guide them to where I thought it was!  The one on the right is still non-palpable so we will never know on that one!

Good luck in finding yourself your own spa break....know I won't be having any treatments, but hopefully PICC line may be gone so I can go swimming or relax in the hydropool/jacuzzi 🙂  

Heard last week that looks like my trust is rolling out the Phesgo jabs, hence why hoping no more PICC line (they will be so relieved to not have to deal with me anymore haha 😂).  Won't know if it's going to be both H&P or just H until after surgery pathology results...but either way should be done by injection and at home by district nurse so less traipsing backwards and forwards to the hospital 🙂

Glad to hear you're doing OK after your first EC - and yes, I was absolutely famished when I was on the steroids!  Fortunately my diet is 'reasonably' healthy but definitely needed carbs for the first few days (cheese toasties a regular favourite and have now discovered chocolate milk....oh dear lol).  Since diagnosis before Xmas last year, I have managed to loose around 24lbs (but at one point had lost 29lbs so peeved that these extras lbs have crept back on).  From starting chemo in Feb, my weight is down by around 10-12 lbs - but like you say, can chunk on a good half a stone in a week when on the roids!

Hope the rest of your week goes well and good luck for EC #2 xx

Love Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi Sian - oh that is wonderful news all round!!  So pleased for you xx  Onwards and upwards for you now and hope chemo treats you kindly....take everything they give you ref the antisickness and call the chemo line if they're not working (too 3 attempts to sort out the right ones for me).

Good luck xx

Sam

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi Angela....wow, things are moving fast aren't they!  I'd guess it's going to be Zoledronic acid and Antrazole???  Good luck with your radiology planning and getting your tatoos (mine will be my first ever - but few months off yet).  I've been reading up about skin preparation before rads and seems a good idea to start the moisturising routine a few weeks beforehand and to also do the whole chest and neck area as well as your back.  Some trusts prescribe the moisturiser to use but I've also got a stockpile of Aveeno Blue to use as well as E45.

Hope you enjoy your swimming and having a little tipple.....I've managed nearly 6 months now off the booze too (well apart from a very odd V&T pre chemo, or small Belgian beer...oh and trying out a glass of Disarrano Velvet for a sore throat, but it was vile 🤢)!

I'm celebrating my birthday soon too....so our trip away ties in with these celebrations as well as end of chemo and my 2nd covid jab.  Hubster's got me a new supply of my Coco Mademoiselle so just hoping it still smells nice on me - been avoiding all perfumes just in case, but can still smell perfume on my daughter and it smells lovely to hopefully sense of smell not been affected.

Good luck with your blood tests...guess I'll have mine once treatment all done to see if I'll be on tamoxifen or one of the post menopause AIs.

Take care and hope the new prescriptions are kind to you xx

Sam xx

Teagold
Member

Re: February 2021 Chemo Starters

Hi everyone

@hopeful1974 that sounds like really positive results from the surgery! Can imagine how relieved you must be. How are you feeling?

@CrazyCatLady/ Sam - really lovely to hear from you, though sorry to hear about the dramas with PICC dressings etc. Just wanted to say also sorry that you’re anxious about other lumps and bumps but hopefully the MRI will put your mind at rest. I had a MRI a few weeks back and I’d been prodding myself a bit beforehand (naturally, having been told by the docs not to etc...) trying to work out whether any change, and although I thought things were different I could feel quite a firm and bumpy area still which was freaking me out. When I saw the surgeon she had a feel and said this was actually just normal boob tissue and that the reason it felt different to me was because there was so much change going on due to the chemo etc. Your mini break sounds fab - we’ve just started doing a little research into spa hotels for July too hoping for a few days away, would be so lovely to get a break before surgery. 

So I’m on day 7 post EC and generally have been ok since first night. I do wonder whether the blood transfusion helped as haven’t felt so tired and breathless, those extra red blood cells must be doing some good! Had a horrible shock yesterday when I got on the scales and realised somehow I’ve put on five pounds just since last Friday - steroids? Water? Or just being very greedy???!! I’m like the lady in Ticking Off, in that the food I most fancy is the least healthy - pies, quiche, cheese, chips, pasta etc. Everyone says oh don’t worry about it it’s the least of your worries and of course I know that but still found it hard. 

@Gelbel between the leggings and the hair you are sounding very stylish and foxy! Great that you’ve been enjoying work. I have to say this week I’ve been really switched off - I did quite a bit the past couple of weeks but thought I’d keep this week clear to see how I felt after first EC. I just got a massive envelope through from HR of insurance forms I need to fill in for them - haven’t been able to face delving into that just yet, maybe one for the weekend!

Hope everyone else doing ok this week, sending hugs.

Tg xxx 

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady Thanks for the tips. I think I’ll be on Paclitaxel with Trastuzumab (not sure about Pertuzumab as I’m having it post-surgery and they only usually give that one pre-surgery). I’ll probably be starting it in mid-June. 

Big news today is that I had my meeting with the surgeon and he told me the results of my surgery. There was no more cancer found in any of the 17 lymph nodes he removed. So, my treatment plan remains the same. My tumour was Grade 2 rather than Grade 3 (which it was when it was biopsied). He said this may have been thanks to the chemo having an effect. He said that it was the right decision to have a mastectomy as the DCIS next to my tumour was larger than he thought. So, a lot of relief here today. 

I hope you all have a good night’s sleep. xxx

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady / Sam

How lovely to hear from you. And apart from being a bit generous with your sick 🤮 and iffy PICC reaction, all sounds good. Enjoy your break. 

Well, things have moved fast here... saw one of my team's doctors yesterday and talked rads and tablets.

Bone and hormone tablet to start in 4 weeks. They've been subscribed so I'll get them on Friday. I do have the names but I'm very chemo brain as work is mad (but loving it). The bone one starts with Z and the hormone A. 

I'm having blood tests to confirm I'm post menopausal as I've never had any signs nor symptoms. My periods stopped after a procedure when I was 38 so no obvious signs there either.

Rads appointments came thick and fast this morning - measurement whatever it's  called one in 14 June. We're going to see my family 20 June for a week. Then rads from 28 June to 16 July.

Swimming and a drink will be birthday presents to myself at the end of July. Of course I can drink before but I might as well do a full 6 months' abstinence. 😇

Talking of chemo brain, I've learned how it's linked with how tired I am. So's hubby!

I do hope everyone is doing well, safe and comfortable.🤗

Love AnGELa x 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Aww thank you @hopeful1974 /Siân - hope your recovery is still going well.  Sorry to hear you've had the hot flushes start - I've not yet started the joys of enforced menopause but sure once they put me on tamoxifen that'll come.  My husband is the one with the night sweats (perhaps he's having them for me lol!) so we have a mini air-con unit next the the bed which was wonderful when we had the hot weather last year.  Also heard about using a cool bag freezer pack wrapped in a couple of pillowcases and then put under your pillow (so you are not lying with your head directly on it) and it stays cold a lot longer than the gel pillows or a cold water bottle.  My daughter has also brought me a hot and cold mat to lay on when needed (hot for the muscle aches and cold for the flushes)!  Either pop it in the freezer or microwave...not tried it yet though but it's pretty big so would give good surface coverage 🙂

Good luck with your chemo...the first one can be a very long day so take plenty of drinks/snacks and something to keep you busy (I was mainly on Facebook or reading!).  Do you know which regime you'll be on?  If you're on TCHP (Docetaxel, Carboplatin, Herceptin & Pertuzumab) give me a shout as this was (is) my treatment.

xx Sam xx

 

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady How lovely to hear your news. It must be wonderful to have the end of chemo in sight and a treat planned! That is really interesting re the magnesium. I’ll bear that in mind if I get twitchy! I’ll be starting chemo with Herceptin some time after mid-June. I personally found surgery much easier to deal with than the chemo, so hopefully you will too. Siân xxx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning everyone....sorry I've been lax again doh!  But generally all seems to be going ok (well, apart from another wobble fest during last PICC line dressing lol!).  Yet again had a bit of a collapse and appears I threw up whilst I was unconscious so yet another lovely hospital garment to leave for home in (getting myself quite a collection going now haha)!

So plan is they'll be lying me down for this weeks dressing change - but I'll bring in one of my new snazzy NHS PJ tops to change into just in case.

Have now had my first follow up heart MRI due to H&P but don't know results of this as yet.  They did however put me onto magnesium supplements after last chemo on Thursday so may have a bit of issue with heart (or it may be to help with all my lovely twitches in eyes, hands, feet and calves!)  Anyway, appears magnesium deficiency causes a multitude of issues so upping my green leafy veg, nuts and pulses (the good news is that dark chocolate is a good source of magnesium...normally my go to choccie but not at the moment due to it tasting like soap!)

Also booked in next week for my breast MRI to see how the chemo's been doing and in preparation for surgery (which all being well will be in early July).  However, not sure if I'm imagining it, but I can feel more lumps in my left side....it could just be that because I've lost some weight, and I'm more aware of lumps and bumps, that I'm feeling more??  The main lump is hiding generally behind my nipple so really difficult to actual pinpoint it and get an idea of whether it's got smaller or not.  But when I do manage to feel this lump, it's like there's a string of other lumps when you move across.  Trying not to think about it too much (yeah I know!) and will wait and see what happens with the MRI next week so fingers crossed!

I've also now organised my post-chemo treat!!  Have booked a 3 day spa break in Yorkshire along with hubster, my mum and a close family friend.  Thought I'd get something in before surgery so off in middle of June and just hoping they'll not organise me any appointments during these 3 days.  So planning trips out to Whitby, Scarborough and possibly a shopping trip in Beverley!  

I also have my two granddaughter's visiting me on 12 June which will be the first time since diagnosis in December and I absolutely cannot wait....they've been staying away until I finish chemo so have only seen them through car windows since Xmas 😞  

Also managed to have a couple of garden visits from family in last couple of weeks which has really bucked me up.  Just nice to be able to sit with a cuppa and have a proper natter 🙂

So countdown now to last chemo is 18 days....roll on that bell ringing moment!!  Gonna get my hubster and daughter to come for that so I can record the moment....there will be a lot of tears!!

Hope you are all doing Ok and treatment going well xxx

Love to you all xxx

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Wow @Gelbel that’s fantastic re your hair sounds like it is coming back in well!  So pleased for you and will give you a confidence boost.

Mine is not quite at that stage yet.  I didn’t shave mine all off at the start so it was difficult for me to tell if new hairs were growing or it was older ones which had broken off until the nurse confirmed it was new ones.  It still looks pretty sparse to me as I can still see a lot of scalp.  Mine mostly growing in silvery grey.  Hopefully some dark ones mixed in as a lot of dark ones fell out which I didn’t realise I had.  It’s certainly going to be a long time before it resembles anything like it was.

Hope you have a lovely time on Monday.  It’s good things are starting to open up again although the new covid variant is making me nervous.  I hope they don’t lock us down again as I feel I’ve been stuck in long enough.  I am still a bit nervous about going out until I have chemo out of the way.  Enjoy the hugs too I have missed them so much.

Glad the rugby was fun and I am sure you looked fab in your leggings - go Gelbel!

Enjoy your evening.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

It doesn't hurt thanks @Teagold deffo not op related. 

@Kaz11 yeah on your hair! Mines still growing nicely. When I say nicely, I mean dark at the sides and back and grey or white from the fringe to where the skull starts to go down at the back and sides. If it was dark all over, I'm close to going wig/hatless. If I say so myself with heavy dark blue or green eye liner it's quite a good look. I rarely wear either in the house now and can pull on my gym wig in seconds if I want to turn my video on for calls at work. 

Enjoy Wednesday. 5 of us are meeting inside our local on Monday for a quick slurp. It's not been open since the last lockdown as they don't have a beer garden. Then when we leave we'll have a hug outside as we part to go our homes.  Bar me they've all been jabbed twice for a while so I'm happy to do it.

Rugby was wonderful except I ended up wearing pleather leggings as the only jeans leggings that fit my ever expanding belly were in the wash. So felt like I was trying too hard. They kept me warm and dry though.

Lazing around now watching not a lot on TV with hubby.

Happy evening one and all.🤗

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Aw @Teagold sorry to hear about the mice that’s awful.  Makes me shiver thinking about it.  I too had “signs” of a little furry creature having been in my kitchen.  I was scared to put down traps as didn’t want to deal with the aftermath! 🤮.  Ended up buying something on amazon that gives off a sound which we can’t hear but is supposed to scare them away.  Fingers crossed it works but if not like you I will be calling pest control.  As if we don’t have enough to deal with.

Sending hugs.

Kaz11x