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February 2021 Chemo Starters

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning my lovelies - hope you are all doing well and getting to enjoy a little of this lovely summer weather.

Sfx from last chemo have been pretty much non-existent which has been wonderful!  So even though it's only been 8 days, I'm already feeling 'normal'...well, as normal as you get after chemo! 

I've now seen my surgeon and he's confirmed I'll be having exactly the same surgery as planned for in January, so bilateral lumpectomy with therapeutic mammoplasty.  Plus (and he only confirmed this to me yesterday) he now thinks he can save my left nipple - apparently when he saw me in January he was thinking it was likely I would lose this one due to the skin tethering/inversion, but as it is now less pronounced and only visible when I raise my arm, he thinks it may just be salvagable!  So not only will I get my reduction and lift, but both breasts will still have their nipples.  Sounds so silly to be worrying about something which serves no real purpose any more and is basically now just a cosmetic 'decoration'!  It's odd how pleased I am about this as I know it doesn't actually make any difference - and no-one other than hubby sees anything anyway (oh other than about 15 other people who prod and poke me lol!)

Surgeon also said he will still be removing same amount as before as the theory is that by removing around where the tumor bed was, it will ensure any stray cells which don't show on the MRI can be removed.  So will be around 3cm x 3cm amount of tissue taken from each one and they'll shuffle some tissue around to fill the gaps so will keep a good shape.

They also confirmed on the day that I have my surgery date booked in already - so Mon 12th July will be the op day (eek!).  I'll also have 2 surgeons working on me at the same time so as to reduce how long I'm under general anesthetic.  Said should be around 3 hr op and is going to be at my normal hospital, so only 10 mins from home.

This means I have a good 4 weeks of no treatments and can hopefully get to enjoy some good down time at home.  I'll be doing WFH (18hrs) from next week up until surgery and then plan to take 2 weeks' sick leave and then (if feeling OK) plan to resume my WFH.  Of course all depends on how I recover and if I still get hit by the tiredness post-chemo and post-op.  As always, my boss is being brilliant about it and keeps telling me to take as much time off as I need.

And more good news is that today (!!!) I finally get to see my two granddaughters....there may be tears again lol 🙂  Overall this past week has been so, so brilliant!  I have felt good, celebrated my birthday on Thursday and had my first meal out on Wednesday (taken to lunch by my mum and a very close family friend).  I received my Look Good Feel Better goodie bag with some really good high brand products (Clinique, Clarins, Channel, YSL!) - so these were utilised well for my day out, along with my wigs' first official outing!!  Plus, everyone is now saying they can see my hair growing....slowly but surely 😁

Hair!!Hair!!Wig outing!Wig outing!

Wishing you all the very best for the coming week and don't forget the Factor 50 this weekend 🌞😎xxx

Love to you all

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Thank you @Rainbow70 for saying those lovely things which has made me feel better.  It has been a huge emotional rollercoaster for us all and continues to be so doesn’t it.

Totally get where you are coming from with the muscle aches.  It kind of reminds me of the growing pains I got as a little girl.  Wouldn’t mind so much if these aches were making me taller but unfortunately not!

 I am getting Letrasole as I am post menopausal.  The letter from onco to GP says I will be taking the tablets for 7 years.  Bit scary when you see that in black and white!

Re radiotherapy I am getting 5 sessions - Monday to Friday starting 21st June.  I was told they are condensing it up here now so as people don’t have to travel back and forward for weeks on end.  It’s almost a journey of an hour for me to get there and is a bit awkward to get to but it’s only for 5 days.  Was told at planning session last week that actual treatment is only around 2 minutes each time.  By the time I get in and changed into the gown and lined up etc the whole process they said would be around 12 minutes.  It’s a faff of a journey for that but needs must.

Just realised the time so goodnight everyone and sleep well.

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Kaz11  you don’t sound pathetic at all. It’s totally understandable you will feel lost and tearful on this emotional rollercoaster. Im pleased you  have  the lady from ‘some one like me ‘ to chat with too . I thought that was lovely how the nurses decorated the little room you had treatment in for your last chemo. I have been moisturiser daily too. The body aches are awful aren’t they,  mine are like a burning sensation they come. Oncologist said I was to start radiotherapy around 4 weeks after chemo , so hopefully I’ll get appointment soon . Also said I could start hormone treatment(Tamoxifen)  before radiotherapy or after, I think I will wait to see how many sessions i will be having. I have read the nice guidelines so have an idea what should be offered. I didn’t know it could go through to your back so best start moisturising back too.  Oh yes the joys of hot flushes and the menopause !!
Love to everyone 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Leftygurl so sorry to hear about your wound, as if you have not been through enough already.  Big hugs on their way to you, just awful what you have had to endure with this.

@CrazyCatLady your chippy tea and some fizz sounded fab.  I haven’t had any fizz yet but just received some lovely sunflowers from my cousin for completing the chemo which was so kind.
 I have felt a bit flat since completing chemo. Glad it’s over but the hospital visits have been my life and my new normal since November so it seems odd that I won’t be going on Thursday.  Will miss it (not the chemo obvs) in a strange kind of way.  One of the nurses said I would likely feel a bit lost without seeing them every week and that’s exactly how I feel.  Expected to feel elated but instead it’s more tearful.  Sorry for sounding pathetic.

@Rainbow70 hope you get the rads appointments sorted soon.  I didn’t get any advice about moisturising at my planning appointment but have a lot of E45 at home.  Someone Like Me lady advised moisturising at the back as well as the front as apparently the rads can go through to the back too.

My muscle aches have been bad too and tired again today.  I will start hormone treatment in a few weeks - Letrasole for me.  Onco gave me prescription for it to hand to GP.  She said to start it in a few weeks so that would mean post rads for me as that starts 2 weeks today on 21 June.  Will maybe check next week when at hospital for portacath removal exactly when I should start.  Nurse said pills will give me more aching joints and it will make my menopause flushes worse - happy days!

love and hugs

Kaz11x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Oh no @Leftygurl so sorry it's not looking so good for you today - hopefully they'll get to the bottom of it and get it all sorted for you soon xx Sending hugs and positive vibes your way xx

And fully agree regarding the steroids....seem to see every hour of the clock for first few days afterwards - but least these are the last lot for now.

Hope you got to enjoy some of the lovely weather today xx

Love Sam x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Leftygurl @so sorry to hear you have all this extra worry regarding wound bed . Hopefully you will hear back soon with plan if you need to attend clinic . Sending you a virtual hug .

@CrazyCatLady @Gelbel @Kaz so pleased for you all completing chemo  and planting the flag at the the top of the mountain. @Gelbel @That’s great you can have hair trimmed in 6 weeks. Will be lovely to have a well deserved pamper.  @CrazyCatLady @Fabulous news regarding your scan results. I had bilateral therapeutic mamoplasty not sure how many cup sizes I’ve gone down as not been measured as yet. Like the other ladies have mentioned compared to chemo surgery was much easier. Your  Chippy tea sounds wonderful. Thanks @Kaz  for info regarding radiotherapy , I rang last week as still not heard anything and good job i did as letter not been forwarded on for appointment to be made . 
@Teagold  Fab news regarding your recent reassurance from ultrasound so pleased for you . 

on number 8of 9 paclitaxal today, muscle aches have been awful all weekend. 

Is Anyone  starting hormone tablets after radiotherapy or before ? 

Love to everyone else , your all doing amazing 

🌈xx

 

 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady 

Thank you for your good wishes, but not actually looking so good today I’m afraid as the wound bed is not how it should look so I was on the phone to my plastic surgeon’s secretary this morning. 
She requested a photo and possibly attending their wound clinic tomorrow. It’s for the best probably but it’s such a long way away from my home, an hour and a half’s drive! 🤦🏽‍♀️  But what will be will be as you say.

Didn’t sleep a wink last night either, bloody steroids! 🥴

At least it’s another beautiful day!

Alice xxx

Have a lovely day ever

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning everyone

My last chemo day was so emotional...in a good way!  Cried when I sat in the chair and the sister asked me if it was the last one...so she apologised for making me cry, but they were happy tears again.  Then she cried when I handed over my little thank you gifts and card thanking them all for making it all so much more bearable.  They also took my PICC line out too....bonus!  So having a shower on Saturday was bliss without the limbo cover on!  Also means I can use the swimming pool when I go for my break next week 🙂

The biscuit bribery worked though as both hubby and daughter came in to see me as I was leaving (more tears!) and then home to small glass of bubbly followed by chippy tea.

Then phone calls to family to let them know it was all done - they have all been so supportive and positive, but not in a patronising way.  They understand my humour is what keeps me going, so lots of laughing and giggles.

So after all that emotion, I crashed over the weekend, but other than the woozieness from the steroids and the tiredness, looks like this last lot of sfx won't be too bad again.  Even managed to cook a dinner on Sunday (but not a roast this time - just chicken breast in paprika).  Was also lovely to be able to nap outside in the garden, under a huge parasol and lathered in sun screen.

Also now had my surgery assessment appointment through for Friday morning so lots of questions to add to my list now - mainly if I'll still be getting as much of a reduction as originally advised (possibly loose around 2-3 cup sizes still?)  And also if the skin tether under my left nipple will be resolved with the surgery.  Initially at my original assessment the surgeon suggested doing nipple shaving...so unsure if this will still be the case (and also if they'll balance up the right one so I don't have different sized nipples!)  

So at the moment, life is good and looking forward to this break from treatments for a few weeks at least.  

Wishing you all the best of weeks and treatments, sfx and general life is good to you all xx

Love Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Oh Alice @Leftygurl - just been catching up on posts from over the last few days and can't believe what you've been going through.  Hopefully now though the wound can start healing properly - what an absolute nightmare for you!  Also wishing you well for your remaining pax....every day is a one day closer to the last one xx

Take care and hope the week is kind to you.

Love Sam xx

 

Gelbel
Member

Re: February 2021 Chemo Starters

Hi Alice

My hair came back quite early on Pax - in fact I asked if the chemo was actually working. Though in normal times it grows like mad. It's now nearly 1cm in places. And the back's thickening nicely. I dropped in for a natter with my hairdresser very early this morning... thanks to steroids awake at 4, putting a double roller blind up at 6 (still at it at 2!) popping out at 7:30-9:30 having a shopping mooch after that natter. She's going to get me some coloured mousse  to hide the patchy white front when I'm ready to go out with a crop. She'll take the very ends off in 6 weeks or so to force it to grow more. She said it's not baby hair but real, good quality stuff that looks like its going to be straightish! Hurrah! 👊 I've always been a uneven curly, never nice beachy waves nor coils or ringlets.

My eyelashes are coming back - you can actually see the long ones when coated with mascara. My team at work cheered on a call when I was rubbing my eye as I had an eyelash in it a few days before the holiday weekend. 🤣

Worried about my eye brows as I never really had any and they are not showing any signs of wanting to appear.

When I felt 🤢 on EC sour jellies were a godsend - made a change from more ginger nuts.

Hope you do feel better soon and your next cycles are easier. Perhaps as your wound is healing now it will. 🤞

Love AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Hi Alice / @Leftygurl 


My god I can’t believe what you’ve been going through, truly horrendous. Good to hear that things now seem to be improving but I’m so so sorry you’ve had this to deal with on top of already having to cope with treatment etc. And as you say, even more horrific given that portocath wasn’t the only route in the first place. I really am in awe of you for keeping going through all of this and just hope that things will settle down and start healing properly now and that you can finish your chemo as smoothly as possible with no more unnecessary pain or trauma. Hope you are getting lots of rest and being very kind to yourself, taking it as easy as you can etc. 

Sorry also to hear about the pax side effects - I found pax rough on the tummy too and mainlined ginger tea, don’t know whether it really helped but I guess anything soothing is worth a try. 

Big hugs to you 

Tg xxx 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

i don’t think I’m stronger or tougher than anybody else tbh, I think it’s self preservation and if you’re faced with something like that you haven’t really got any choice tbh, I suppose you could give up with the chemo or treatment but in my eyes that’s never been an option and I can’t think anyone in their right mind would give up, you just got to get on with it.

Yeah it’s been tough though, I can’t deny that, and there’s been plenty of tears shed but things are getting better! 😁

Thanks for replying, good luck & hugs to you too 😘

Alice

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Gelbel ,

Thank you, yes it does feel better getting it off my chest lol as sometimes you don’t know where to start but I woke up at 4am and thought now this is the right time weirdly, funny how things strike you sometimes 🤷‍♀️
Pax was a surprise yes as I was told it wasn’t so bad, maybe it won’t be so bad this time, you never know. The one plus I have noticed is my eyebrows & eyelashes are growing back! Not much growth on the head much though. Has anybody else found this on Pax?

Alice xx

Kaz11
Member

Re: February 2021 Chemo Starters

Jeez @Leftygurl what an absolutely horrific experience you have had.  My heart goes out to you it really does.  As if going through the actual chemo journey is not bad enough in itself for you to have had all that with the portacath is down right cruel.  Something has clearly gone badly wrong along the way and the fact you now have to clean it out yourself literally seems to be rubbing salt into the wound so to speak.  You must be exhausted with it all and I can only imagine how mentally tough going through all this must have been.  You are one strong and very tough cookie Alice and I am in awe of you dealing with it all.  There is not much I can say that will help this other than you are getting through this step by step and hopefully now things going in the right direction.  You are also getting through the chemo cycles so that’s another huge tick to mark off after each one.  Huge admiration for you 💕.

Sending you massive hugs.

love Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Good grief @Leftygurl /Alice that's nothing short of atrocious. When I was reading about how they were dressing the wound thought it needed saline douching and packing. See old school 2 years of nurse training for you (before I dropped out thanks to contracting Hep B).

And so sorry you're suffering on Pax. It's meant to be so much easier. Has been for me - then I had an 'easy ride' with EC compared to others.

Not too long a story at all. Needed telling and hope it's off your chest (no pun intended at all - sorry). Thank goodness for that great nurse of yours. A definite angel. 

Let's hope it heals well and soon. And you find Pax easier of your team can adjust things for you.

Love and hugs.🤗

AnGELa x

 

 

 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi everyone,

Yes I know I’ve been a stranger for the past couple of months but I’ve been reading all your posts nonetheless but just not replying, I just haven’t found the strength tbh. So sorry, very long post coming!🥴😂
About the beginning of April I had my portacath removed to catch you up after a stay in hospital for a week on IV antibiotics to reduce the infection before removal. The surgeon said to me when taking it out that the wound bed tissue did not look healthy at all so advised that he leave the incision open to help the yuck to drain out so I agreed.  After a couple of weeks the wound swelled up again around the incision so I had to have another course of antibiotics for 10 days which kind of settled things down but not completely, it actually felt they were keeping the infection at bay rather than getting rid of the swelling completely and when I saw the lovely nurses at my cancer unit they agreed so was referred for an assessment by a consultant the next week. 
This was on the 10th May. The consultant took one look at it and said that the tissue on the wound bed looked necrotic (dead) and snipped out a sample, and I could see what she meant! So I was admitted there and then for a cleaning out of the wound, she explained that another incision would have to be made under general anaesthetic so they would have room to do a proper job and unfortunately the wound will be made deeper in order to do this also, and be left open again as they need to keep an eye on how it is healing. 
I went home the next evening and hoped for the best. Since the first procedure to take out the portacath I had been going to the wound clinic every other day and they had been filling it with a silver dressing with a plaster on top and when that didn’t really help they went to the next stage up, as they said to a honey infused tape as this is meant to draw all the slough out so that the wound bed has more chance of healing as it needs to be more red and show granulation which is the stage where it shows healthy tissue and encourages proper healing, which it wasn’t doing in a nutshell. Ok so this went on until about the 18th May when I contacted my lovely guardian angel nurse who’s taken me under her wing basically. She contacted a plastic surgeon consultant who she knows personally and who’s work is renowned in the area, and the next week I went to see him.

Now this guy was like a shining light in this whole sorry mess when he sat me down and said “ok so Caroline has told me everything that has happened to you and excuse my French but you’ve had a really shit time haven’t you?” I nearly cried in relief! Yes! I replied lol.

He started talking to me (all important stuff btw) but at the same time started snipping out all this dead tissue with his surgical scissors like I was having a trim at the hairdressers, it didn’t hurt until after a while when he hit a nerve and probably the healthy tissue so he stopped then. He suddenly said “do you shower it out?” I didn’t know what he was talking about as up until then all the nurses who had tended to it had been gingerly using long q tips and saline spray sometimes and swabs, but he said the best thing to do is do away with all the silver & honey dressing as they are acting like a plug and not allowing any air to it so every day I need to get in the shower and rinse it out trying to remove as much of the slough out as possible (sorry if anyone is trying to eat!) pat it dry with some sterile gauze and then loosely gather another wad of dry gauze and put it inside so it slightly contacts the wound bed and then whack a big plaster over the top. I went back this week for a review and although he told me this is going to take months to heal because the chemo will slow everything down the skin surrounding the wound is not so swollen and red which is encouraging 😊 

So, I’ve caught you all up now. I only go to the wound clinic now every two weeks for supplies and talk over any worries and I’m seeing the plastic surgeon in about a months time on 8th July, a week after my last chemo session. My 5th session out of 8 had to be delayed by two weeks because of the infections.

What is really gauling out of all this is back in March I was told I had to have a portacath because I had a collarbone plate and there would not be room for the line to go round the corner of my shoulder if I had a PICC line installed. Subsequently when my portacath was infected in order to give me my chemo they asked if they could try to put a PICC line in and it was successful so although lots of people have had a portacath have had no trouble at all this is not my experience and I just wish they had tried to put in a PICC line in in the first place! Sod the protocol!

I've just had my 6th chemo, oh the joys of Paclitaxel sfx! I actually had my first dose of Pax on my 5th infusion so I’m waiting for the bone aches, bloating, sore mouth, extreme fatigue to kick in next week but for now because of the steroids I’m not sleeping much lol.

I tell you what reading all your posts over the last few months has been amazing and I love hearing all your tales of hope, courage and sometimes despair (as we’ve all had our moments!) but I think we’re all going to be alright you know and we will get through this because we’re strong, and found have found hidden strength to get through this terrible disease. I hope you haven’t fallen asleep through my tale of woe and have a great weekend ladies in the ☀️ whatever you’re doing.

All my love 

Alice xxxx

 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi ladies

@Teagold that sounds good re your ultrasound so fingers crossed for your results next week. Very brave of you being at the hairdressers.  I can only imagine how difficult that would have been.  I think the hair loss is a huge thing for us ladies to deal with.  As you say it’s hard when you know you only have small tufts.  Unless people have been through it I don’t think they can appreciate the psychological blow of the hair loss.  

@Gelbel well done you on completing number 9 and climbing the biggest mountain ever.  So glad for you that you were able to get it done today and it wasn’t delayed after your problems at the start of the week.  A delay to the last chemo would have been a hard one to take.  So with you on not hearing that 5 minute alarm any more and I certainly won’t miss having to get help to go to the loo and the military operation involved being attached to the cold cap machine and a drip and getting those contraptions into the loo with me each time.  
No bell ringing involved at my hospital either.  Think there is one at the hospital where I get the rads but I for one will just be glad to get out of there once that treatment is done.  I didn’t feel as comfortable there as I do at the main hospital it’s just a shame they don’t do rads there, I know I would be so much happier if they did.

I will get bloods done again soon before portacath removal and pre bone strengthening drug so that will involve a cannula but at least I only need to deal with that a couple of times.  The portacath much as I wasn’t keen at the beginning, did turn out to be the best thing for administering my chemo.

Hope you get plenty rest at the weekend.  As you say other mountains to climb still but not as high as the chemo one.

love and hugs

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

That sounds really good news @Teagold Let's hope the results dot the Is and cross the Ts on what the doctor could see. 🤗

Well at 5 to 5 on a Friday afternoon, 18 weeks after I started, I stuck a flag on the top of the toughest mountain I've ever had to climb. That's the hardest bit. We don't ring the bell in Leeds. TBH its never sat well with me from when I first heard about it years ago. Lots of little words in ears going on among the nurses so as I finished the final flush those that could came in and wished me well etc. I blubbed a bit til my nurse of the day found out I was driving home and got all concerned about my ability to do so.

There are other mountains - just not as hard. So don't want to do that one again.
And I so don't want to see another cannula, or hear another infusion 5 minute countdown alarm or have another blood test for a very, very long time.

Now to ride it out for a few days.

@Kaz11 @CrazyCatLady and anyone who recently had chemo are having an easy time of the side effects.

Happy, happy weekend.

Love and hugs 🤗

AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Hello lovelies - sitting here reading all these posts is making me really tearful. You’re all AMAZING!!!! 

@CrazyCatLady I am so so chuffed to hear your amazing MRI results, that is flippin’ phenomenal! Especially pleased as you’ve had such a rough time on the treatment and I know the S/e have kicked you round the houses and you’ve been so brave about it. Sending you a massive virtual hug. Good luck today for the last one, what a milestone and I hope the biscuit bribing works and they let hubby and daughter in to see you ring that bell.

@Gelbel - so glad to hear you’re going to make the final stretch today after such a crappy week - go go go we are all cheering you on today too. Not surprised you’ve been soggy mess after such a rotten time of it, and like you say probably a lot of pent up stuff too as you’ve been so brave and positive all the way through this, and keeping us smiling. Let it all out - you did it, your turn to plant that flag and celebrate, you deserve it.

@Kaz11 you made it!! So pleased that 9/9 and hope the next few days kinder re S/e etc. Great that you’ve now got a clear plan for rads and all sounds v quick and efficient, though am sure will be tiring but if you can do chemo you can do anything. Can completely understand feeling emotional thinking about your mum and dad - big big hugs to you.

I had my ultrasound this morning - I’ll get the full results next week, lovely doc said still looks like everything going in right direction since the last one which was mid April. So I guess that’s good as I was a bit fearful they might say oh dear it’s growing again (massive worrier, obvs). 

Am currently sitting in the hairdressers with my two girls who are getting their first haircuts for over 18 months - watching lots of people getting their hair made beautiful whilst my terrible tufts are stuffed into a cap was making me feel pretty wistful but all your posts this morning have massively cheered me up so thank you.

Hope everyone else is ok, taking it easy, resting up etc.

Big hugs all round

Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning all

Just wakened after a better sleep last night other than being awake 4-5am with flushes 🙈.

Anyway just wanted to wish everyone all the best again for treatment today and way to go @Gelbel you are getting the FINAL chemo - so pleased you know that now!  Woo hoo!

As you all say I know this week post treatment will be the same as last with the sfx so trying not to get too carried away about feeling well again soon.  As the SLM lady said the other day you forget how to feel well don’t you.

Don’t know what happened with my previous message as it must have cut off but just said that when starting chemo in February and knowing if it went to plan I would finish in June, felt like such an eternity and just couldn’t see getting there but here we are.  We are strong women right enough.  Let the tears flow today girls - better in than out.  I feel mine coming on today looking at pics of my late Mum and Dad who would be devastated I have had to go through this.  I miss them so much.

Anyway today is not about me.  Go and knock the stuffing out of chemo one last time and ring those bells loud ladies.  You all so deserve it!

Massive virtual hugs all round 🤗🤗🤗

Kaz11 x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 /Sian - thank you so much and for your reassuring words regarding the surgery.  Hopefully now won't be quite as much to take out!

Love and hugs xx

Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 - thank you for you lovely kind wishes - not sure if I'm buzzing from the steroids or the news!!  Not slept well for last couple of nights so not sure if it's because of the warm weather, the anticipation of today or the nervousness for the surgery (but likely all of it combined!)  But we've only gone and blooming well done it!!  GO US, WE WARRIOR WOMEN 💪!!

That's sounds such a lovely thing for your team to do for you by decorating your area....and good news on the hair front too, so fingers crossed for you that it starts filling out again very soon.  I'm quite looking forward to embracing the grey - it is after all quite trendy still lol 🙂

Hope you don't have too many sfx after your last chemo (doesn't that sound so brilliant!) - hoping mine will be like the last time so only around 5 days of yukkiness, but by far the easiest one yet out of the 5!

Take care and good luck with your portacath removal and rads....it'll all be over soon (well apart from the aftercare treatments and pills!)

Love and hugs xx

Sam xx

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.