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December 2020 Chemo Starters

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden so sorry u got blasted ulcers ! I was told the Gp can prescribe a gel u apply b4 eating ... it’s different to the mouth wash stuff . Fortunately I only get em 2 hours after herceptin n perjeta and they go in 3 days!! 

Let me know ow u get on 🙏❤️

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone! 
Having it drained by needle every 4 days Mondays n Thursdays and tight jacket reapplied!!! FFS .. as if I wasn’t uncomfortable b4🤣... for a moment I get an arm pit back but sadly it’s short lived !! Reassess Monday n bloods as I’m losing vital nutrients.. 

did I say HATE LOW FAT DIET !!!!!🥴🥵

Breast drain out yday and 40 ml added to boob - still looks sad 😞 😂 

RESULTS BACK YDAY OMG !!!! 100% pathological response NO BLOODY CANCER IN SNY TISSUE OR NODE 

I cried  N cried ... I am suffering so much still but this news was the best EVER ! 🙏

so I drank wine n thought “what the hell !!!” Even tho I’m still on antibiotics 🎉🥂

so I can stay on herceptin n perjeta and have it as injection from may 26 for 18 cycles . They said to try leprazole hormone too as I was 3/8 unless I suffer ( I said suffer have u any idea wat my bone pain is like !!! )

they now not sure if I need radio so will have a meeting with consultant radiotherapy to go through it tho my surgeon friend said it does minimise local recurrence in ladies with diseased nodes pre chemo .. so will see ! 

so happy and yet still can’t enjoy any time cos still in so much discomfort!! But I’m trying not feel sorry for myself as the chemotherapy n targeted treatment has and is working 100% 

hope u all well ... keep talking .. keep making us all laugh ❤️😘xxxxx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi It's been very quiet on here this week so I'm assuming everyone is getting on ok. What about you though? How did you get on at the hospital on Monday? I hope there's been some improvement and your pain is being managed. I've been thinking of you all week.

As for me, the dreaded mouth ulcers are back since about 4 days ago. The pain is intense and I can barely eat or speak and my sleep is terrible.

I am using the Difflam and Lidocaine mouthwashes but they don't really help. It's been suggested that gargling with dissolvable aspirin may help so I'm going to try it. 

I had this problem way back in December and my oncologist reduced the dose of chemo drug that caused it and this really worked. I'll be speaking to her next Tuesday before chemo on Thursday. I really do dread this happening again.

Hope everyone else is feeling good. xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@higgi I hope the clinic sorts you out tomorrow or at the very least help with the discomfort until it gets resolved.

Yes, the locus were swarming when the shopping arrived today lol 

Oh skinny jeans, that will be a treat. I live in leggings at the moment.......although I am 3 stone lighter since I found out, but I needed it lol

Sending love xx

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Aw @PaulineS27 @thanks for making me laugh ! Our house used b like that .. I have 4 kids ... but only 2 now at home .. the Tesco delivery guys used to call it the “cornershop delivery” and couldn’t understand how a house cud get through that much in a week 🤣

So I’ve just got get through today then they can look at it in the clinic tomorrow 9.30 ... 

words can’t do it justice ... the pain the discomfort.. as u know I’m pretty tough but this is the worst I’ve had to deal with !!

the only blessing is I shud b able get in mi skinny jeans agsin soon !😂🤩😘

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@higgi you have been so strong, you have got this!!! and I wish I could take away your discomfort.

If you came to mine today you would be on a low fat diet as my lot have eaten me out of house and home, my sister put all my shopping away last week and proudly announced 'I have put the fresh meats in freezer so they dont go off' I did chuckle when I explained they wouldn't last long enough to go off, she came today, looked in the fridge and decided my family are like a swarm of locus 😂😂😂 shopping is coming again tomorrow, they will start raiding that before it is out of the bags too 😁 

Wishing you a restful sleep xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Thanks everyone! Really appreciate your kind words and thoughts ... it’s the worst thing I’ve faced so far on this horrendous journey . 
in a lot of discomfort n the low fat diet does not rock my boat 🥴

keep posting make me laugh ! Love to you all xxxx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@higgi sending you prayers, virtual hugs and get well vibes. This is a hurdle you could of done without! I hope the weekend passes quickly, the pressure bandage stops it 🤞💪

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@higgi   really sorry to hear that, you seem to have had more than your fair share of complications. ☹🤞. Really hope it resolves with the pressure bandage.

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

@higgi So sorry to hear about this problem. I have never heard of this but it does sound as though you have been terribly unlucky. Fingers & toes crossed that they can sort it for you. Good luck for Monday. xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Thanks everyone feeling your love n support ❤️❤️❤️❤️
didn’t sleep well with the pressure bandage ... it goes above the boobs pushing em down ... my poor foob ! 
can just about breathe jeeze .. keep thinking ... stay still don’t move it might stop like nose bleeds do !!!!! 
just got get through til Monday when they will have another look at it . 🙏🙏🙏🙏

good job I put on 5 k during chemo as I’m now on this low fat malarchy diet so I produce less chyle !!! 

hope u all ok ... thanks again xxxxxx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

@higgi that is such horribly bad luck, I'm so sorry. On top of everything else  as if you don't have enough to cope with. As with everyone else,  fingers and toes crossed that it can be sorted (healed over I guess...) with the pressure bandage. Lots of thoughts with you xx😘

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi Oh higgi, that's awful news and I feel so bad for you. You certainly don't need this on top of everything else. I hope the pressure bandage works, I really do.

Have you got people around you to help you get through this? The psychological stress must be huge. Use your specialist nurse to support you if you feel you need it.

Sending prayers and a million good wishes to you. xx❤️❤️🤞🤞

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Oh @Guest user that's simply arse. Thinking of you and hope they can sort it out xx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

Prayers coming your way.... and hugs and best wishes. Hope it settles down. This one's really testing you. X

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi guys !! No results as promised cos delay due to bank holiday last week !!! Wats more I’ve not got a seroma it’s a fooling chyle leak !! ffs !!!! Really not funny . Worried n so disappointed 

ia chyle leak caused by part of thoracic duct being inadvertently cut during surgery !!!!
Options ... apply pressure bandage hoping to stop it snd a low fat diet ..
Option to also stick a drain in too
Option if above fails ... surgery to try find it but nitemare as hard to find where in arm pit it is without damaging nerves !!!

So got pressure dressing on and go back Monday to reassess .
Fingers crossed it settles . It’s an extremely rare complication only seen in breast clinic x1 in last 8 years !!! Typical ME !!! Xxx 

hope you are all ok . Prayers for me to get this sorted gladly accepted n very much needed 🙏xxx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Hope you are all doing ok & it is great to read your posts which are so positive & full of humour. Keep it up ladies - let’s look on the bright side as much as we can😊

@higgiI can certainly sympathise with you about the armpit seroma. Mine actually burst before I could get it drained. Nobody had warned me of that possibility- it was like a scene from Alien in my bathroom!! And they fill up again so quickly - but then suddenly just disappear. 
@Karden hope you are still doing ok & FEC doesn’t cause too many difficulties. Yes, I have finished active treatment. Just hormone tablets now & 6 monthly bisphosphonate infusions. 
@Pyewacket glad that your radiotherapy is going ok. It really is easy although the travel for most of us is a bit of a pain. I made the most of the journey by appreciating the time on my own without medical or family distractions. Hope you continue to be ok & not have any reactions. 
@donkeywoman pleased that your mood is holding up well & good luck with your return to work. Hope it all goes well. And enjoy your spa day. 
Hope everyone else is doing ok. Best wishes & virtual hugs to all of you xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Pyewacket ... still laughing at your post re the hair as that’s exactly how I look n feel ! 🤣 

unfortunately I got a seroma under the arm pit .. yeh like a balloon filled with water so yep had the needle in n drained ... my god ... filled a bed pan !!! The nurses were jokin saying anyone for horlicks ?! Jeeze it looked just like that or weak latte . However it’s filling again day after ... I’m day 8 post op . I’ve still got boob drain in so god help me if that wasn’t in !!! 
pico changed yday and all looked ok .. well I mean healing ok they said .. as it’s not inflated yet and looks like a sad little boobie🙂.  

If I didn’t have this seroma under arm pit I’d b ok ... but it’s so inconvenient!!! 
trying dig in as got my 2 hour infusion later ... it certainly is the hardest triathlon ever (I’ve never actually done one but it’s my analogy) 

great news re your radio ! Hope it all continues !  Keep in touch ! 

hope everyone else ok xxxx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Pyewacket I love your sense of humour, the description of your hair made me smile as I went through the same stage but it's slightly longer now ( and when I say longer, I mean 2-3 mm) and is now so silky that I can't stop stroking it. I'm shocked by how white it is at the front and sides and dark on top and back. I'm 61 and have dyed it for years and this has taken me by surprise. Oddly, it's made me feel that I might give this natural colour a try and maybe free myself up from those hair colouring appointments that don't seem to last long inbetween. It's likely to fall out again now that I'm back on chemo but at least I know what to expect. Glad to hear that radio is going well for you.

@grannyp Have you finished your active treatment? How are you doing now?

@higgi What an awful experience for you at A&E, are you feeling better now? I would certainly consider putting in a complaint if you feel up to it. Who knows how many people will experience the same? You're a strong person and knew at heart that he was talking rubbish but it still frightened you and that's inexcusable.

@donkeywoman I also had Herceptin on its own during my 2 month break between chemos and I felt fine. It's reassuring to know as some of us will be on it for a total of 18 cycles. Hope you are feeling ok following your 2nd Covid jab. It's great that you have found a suitable swimsuit and I think the spa idea is a good one as it will be a positive space to introduce yourself back into swimsuit wearing. How are you feeling about your return to work?

I'm on annual leave this week as I booked it before knowing about the additional chemo. Even though I've been working from home it's lovely to switch off and I think I may feel like venturing out by tomorrow. My leg and ankles are still sore from the fall but hubby will drive and it will be good to leave the house. x

 

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

@Guest user oh the joys of that buzzy little bastard battery dressing, waking you up all night, well once you've got to sleep after disentangling yourself from the drains of course. I was in a rush to get the drains out as they're so annoying, but wish i'd had them in longer as they're not as annoying as gallons of fluid sloshing around under your skin! I've had mastectomy and it was followed by ANC 3 weeks later. That was last October and yes back of my upper arm is still numb, and my armpit area, was warned that was how it was likely to stay, it's no bother though you get used to it. So sorry to hear about the A&E incident, that's really inexcusable, you shouldn't have had to deal with it. Hope you are recovering.

Had my 5th radiotherapy today, the treatment is a doddle, @donkeywoman I am so bored of the travelling already! although it's not problematic and have had some interesting detours on the way home - but hey i'm a 3rd of the way through already. No side effects apparent as yet, although they say start around 2 weeks in and peak around 2 afterwards. Always something to look forward to with this breast cancer lark isn't there?

My hair is growing a litte, but in a male-pattern-baldness way. It looks scraggy and frankly minging, hope this phase passes cos it's a lot worse than actually being bald. It looks really unhealthy and nasty, like some poor druggy, malnourished, homeless soul.

Pye x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all, 

@higgi - I am so sorry to hear of your awful experience in A and E - that is simply disgraceful and there is no excuse for a Dr, however junior, to speculate out loud like that. (excuse rant, I've been a nurse a long time and never cease to be shocked at the things my colleagues - especially the medical ones - say). I wonder if you have thought of complaining? Obviously only if you feel like it, no pressure at all. But if you look on your hospital website, there should be some kind of easy way to make a comment. You are clearly a capable, intelligent woman, and the comment put great fear into you. So I hate to think of how it may have affected someone without your knowledge and confidence - and this website to get some support from. And just a few days after major surgery, too much to cope with, I feel. I wonder how you are feeling now? I guess with Thursday and results coming, it will be a weird, jumpy kind of week. Sorry if I missed it, but has the swelling reduced at all? Hope you can be kind to yourself - and re relaxation - I've never tried the tapping thing that @Shine13 mentioned, but I have friends who have and totally swear by it. 

@Karden - you are such a star with your positive and generous attitude. Fingers very firmly crossed that the FEC is not too unkind, you deserve (as we all do of course) a straightforward ride... 

@grannyp - as always, good to hear your wise words. And glad you are not having the post (though not really I know) treatment slump. Me neither, after the initial one straight after the last chemo. I had my first Herceptin on its own last Monday, didn't have any side effects as far as I can tell. 2nd Covid Jab on Tuesday, then a few days 'holiday' before starting back at work next Tuesday (11th May). I popped in to see the team on Thursday, which was easier than I was expecting. I will be on some kind of phased return (think I will be making that up myself as Occupational Health haven't been in contact yet) which is good as, although I feel pretty well, fatigue still kicks in during the afternoon. Anyone else finding that? 

I ordered a swimming costume from a specialist post surgery supplier, now that I have my super silicone prosthesis! I'm going to ask a friend if she fancies a Spa Day with me soon. I don't really like spa's (get a bit bored and fidgety!) but would like to try swimming in what feels like a safe place - less crowded and rushed than our local pool. And I trust this friend to tell me if I look weird! 

Do hope everyone is able to enjoy the weekend - is it bad that I'm happy about the rain tomorrow? It's so dry here... 

@ Pyewacket - is it this coming Wednesday that you start radio? All the best for that - hope it's not too windy for your first trip on the bike!  

xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp  thanks for speedy reassurance.. really helps ! 
weathers not so nice in Bolton bit cold n wet ... not ventured out yet ... keep forgetting I do have wait for district nurse come ☺️ 
enjoy Sunday everyone xxx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Hope you all have glorious weather like we have here. 
@higgi pleased to hear that you have got through surgery but what a terrible experience you had at A&E. Good that you were able to get some reassurance & hope your team can totally put your mind at rest & explain things to you. I had a similar experience A&E back at the start of my chemo. I wasn’t feeling great & went there one evening - was definitely being over-cautious but aren’t we all when not knowing what to expect! Anyway when my white blood count result finally came through it was high. The doctor was surprised & whispered to me that this was probably due to the cancer in my body. I had already told him I had undergone successful surgery & also that I had received the single dose filgastrim injection which I knew boosted the white cells before they started to drop. He ignored both these things - didn’t even seem to know about the injections! - & terrified me. And he was a senior doc, not a junior!! My chemo team reassured me the next day. 
I had node clearance &, almost 7 months later, I still have sone numbness in the armpit & right at the top of my arm. It is much better than it was & to be honest I don’t really notice it. It still feels a bit odd if I think about it but doesn’t cause any problems. 
Good luck with your results & to anyone else who has appointments or treatments this week. 
Hope you all have a good Sunday & Bank Holiday x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Woodybird  thanks for speedy reply! Yeh we decided do over because then if I want it revised we can go under muscle in 12 months time as it will b a fresh plane and will respond better .. but it might b ok anyway 🤣🙏 . I have wait at least 6-8 weeks after surgery b4 radio ... all depends ow quickly it heals cud b up to 20 weeks ... that’s the cut off apparently for radio after !!! How’s the arm ... mines very numb at top underneath back .. they said it wud be ... does that stay ? 

Might try stepping outside the house .today .. it’s been a while ... as In round the garden ! Don’t worry I’m not going on a trek .  
ive already had my 1st zoledronic 6 weeks ago so just having 3 weekly her2 (herceptin n perjeta) infusions now ... next on wed !!! (As it’s a week late 4 weeks due to surgery last week 😅) I’ll find out Thursday the future plan ... RESULTS DAY 😳🙏

happy Sunday everyone! Hope u all moving more than me 😘🙌❤️

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@higgi I did have surgery first. Implant is over muscle. Yes will have to see how it gets on with rads, was always going to be temporary anyway. Still haven't really decided what to go for on a permanent basis but less keen now on using my own tissue, just because it means yet another area of my body being hacked away at. Will have to see what the outcome of all the other treatment is too.

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@higgi  what a nightmare junior docs are still training so that sounds totally inappropriate and distant lack of specialist knowledge that should be completely disregarded really was the last thing you needed. We have a 24 hour nurse help line for the Marsden, you might have something similar.  They can help bypass a/e as waste of time.

I am having lumpectomy with SA node removal and query full axilliary dissection depending on histology in theatre. So getting off lightly for surgery though as we are all learning plans change.

Hope you get some reasurring advice soon difficult over a bank holiday.

Xx

 

 

 

 

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Woodybirdthanks yes have breast clinic support but not available til Tuesday cos of bank hol . 
did u have surgery b4 chemo then ? Hope radiotherapy goes well and interested see ow implant fairs with it . We’re u over or under muscle ? 
hope everyone having a lovely weekend n relaxing well xxxx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@higgi You have been through the mill 😔 Sorry the hospital succeeded in stressing you out rather than reassuring. As you said, they spoke without proper knowledge or experience, so don't let their words get to you. Be patient with the drain, it seems to vary by person, I had to keep mine a long time (6 weeks but had mastectomy and ANC in 2 separate ops 2 weeks apart), but a friend only had her's 2 weeks. I have tissue expander and had same thing, had to wait before inflating. I'm still lopsided as I want to lose weight, hoping to reduce the size of my natural breast rather than increase the fake one 🤞 It is an anxious time and you've come through so much already. Do you have breast care nurses in your area you could speak to on the phone? I've found they can be knowledgeable and helpful. Be kind to yourself, it is still early days in terms of recovery but being so fit to start with, I'm sure you will make great progress.

Rad start date delayed for me as it's taking longer to set up (doc said that initially but radiotherapists gave me appt with a shorter time frame - doc was right all along!). 

Take care all. Enjoy the long weekend, garden will be grateful for the rain even if I'm not 😂

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi Niamh ! Sounds like u similar path to me ... wat surgery you having ? 
I thought I was doing fine ... no probs with surgery site but I thought I’d mention to district nurse that I had some swelling ... like u get on a plane an oedema in abdomen that was migrating down each day like fluid trying just pass out ... I wasn’t worried. She said she not seen it b4 so get checked out ! 
well wat happened next was a nightmare!! Trip to A&E 48 hours after 7 hour surgery .. the junior doc hadn’t a clue n said .. oh cud b stomach cancer liver mets the fluid cud b spreading cancer round your body now !!! U can imagine I was traumatised yet again ... but trying rationalise it at same time saying this is stupid ... I’ve had chemo I’ve had targetted treatment I’ve had everything cut out !!! My bloods have always been great !!!! So they insisted on liver bloods n salts test to check if liver cancer !!! 
had wait 2 hours ... all bloods ok ... but they still confused re fluid in abdomen draining ... sent me home n writing to my consultants. 
I do have a friend of a friend whose a breast cancer surgeon do asked him as I was so distressed ... he said it’s ok and they talking nonsense !!!! He said if you have chemo then surgery u more likely see it as our bloods are still different to b4 . 
mall I can say is bloody good job I do fit as to go through that 48 hours after 7 hour surgery takes a lot .. god give me strength. 
I’m back home snd trying relax but it’s so hard wen someone says something to freak u out without any knowledge or evidence ???!!! 
hoping my team when I see them over next 2 weeks will reassure me 🙏🙏🙏

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@higgi well done biggest hurdle cleared.  Wishing you a speedy recovery. Niamh

My hair is coming back white but just a short fuzz. I was given a present of Grow Tonic by Umberto Giannini I keep slapping it on but have no idea if it makes a difference.  It includes caffeine and pea sprouts so you could make your own.

I recommend a "tapping" app. It is the only mindfulness/ meditation that works for me. It includes tapping on acupressure points and is very physical.  I definately feel anxiety levels going down after a session.

Anyone lost a nail having finished chemo, a couple of the toe nails looking very dodegy. 

Now just on Herceptin and Perjeta and really hoping most previous side effects were the taxol. It would be great if the diarrhoea stops. I am feeling better with more energy.🤞

@Karden Will definately be doing post op exercises.  I think they might help prevent cording. Last thing we want coming out of this journey is s frozen shoulder.  I have 2 weeks treatment free now until surgery just a pre op meeting so hope this heat wave comes soon and I can recharge the batteries  before next hurdle.

Bye for now.

Niamh

Xx

Shi
Community Champion
Community Champion

Re: HiRe: December 2020 Chemo Starters

❤️Higgi ❤️ take it steady allow things to knit back together, keep eye on temperature too in case any infections try and start, straight on phone if you suspect or something doesn’t feel right, always best to make a call to your team. Take it steady with post op exercises, I found using sticky dots helpful on door frame to see my progress each day, gave me sense of achievement even if dot was only 1cm above the day before, I was able to see the improvement because of the dots if that makes sense, just wanted to share in case that might help you with post op exercises ❤️ extra dark Jamaican black castor oil (sunny isle) one worked well for me, helps get hair back, works on all hair types rub on head and leave for at least 30 mins and then wash head as usual 👍💕💕Shi xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone.. I’m alive !!! Day 2 post op n feeling bit over whelmed with drains n pico dressing battery pack all hanging out of me and into my little bag 💼
I was under 7.5 hours !! Long long time as apparently it takes extra time for positioning for the total axillary node clearance! She says all went well but has left tissue expander implant quite deflated to allow wound to heal before pumping me up ... so not to worry about the look at the moment - very asymmetrical!! Main thing is to heal with no infection 🙏🙏🙏🙏 

I’m very anxious and find it hard to relax as there’s nothing I can do but rest and recover n wait n see . 
don’t sleep great at all still but glad to b out of hospital... was crazy busy n I felt so at risk of covid . Didn’t get 2 nd jab b4 op and now my surgeon says I can’t have it til fully healed . 
it’s full on next week ..Tuesdays . breast clinic to re do pico dressing n hopefully get rid of drains but that’s only when u only losing 30 ml a day for 2 consecutive days ( i losing 200 ml at present!!!! ) .

wednesday .. 2 hour infusion of herceptin n perjeta

thurs results !!!!!!! Gulp pray

ive a long way to go compared to most of you but just take each day each step as it comes .. I can’t imagine the outside world yet as not been out since Oct to a shop etc .. only been out to walk or medical stuff . 
but I do get my lovely nails done again on sat ... she comes to my house so lovely for me . 
I’m sorry but I forget .. has anyone else had a mastectomy in this group ? Or ANC 
AXILLARY NODE CLEARANCE? back of upper arm numb as I was told to expect but no swelling as yet thank goodness!! It’s early days snd lymph odeama can come up to 3 years later !! 
hair is grey stubble ... bloody awful but keep it hidden not a great look ! Also bit patchy too 🤣 daughter told me about some serum drops so just ordered ... can only hope 🙏 . Anyone else using them .. multi peptide hair density serum ??? Not expensive £15

think that’s my update for now .. hope everyone is ok and look forward to reading your updates despite being very jealous of you who are nearly finished and going out !!! Big hugs 🤗 stay safe ❤️❤️❤️

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp Thanks for asking. It went ok yesterday but although I expected it to be a long session for PICC insert and chem it was 7 hours. There was a mix up with recording my weight and they had 2 different figures so they had to weigh me again to work out the chemo doses. It delayed treatment by 1.5 hrs and I was last to leave the unit but at least it got sorted out.

I am having FEC and Herceptin x 4 cycles so my last one will be 1st July. It feels as though my PICC line has never been out and it will be lovely to see the district nurses again as they're a great lot and it adds to my social life!

I have had a good sleep and feeling ok at present. I hope I don't get bad nausea and headaches as some do. I have been warned that my nails may be affected even more than they already are, they're currently have horizontal lines and break easily.

I'm thinking positive as always - 1 done, 3 more to go.

Anyway, how are you feeling? I'm so pleased that you're through the radiotherapy and can now focus on a more normal life. What ongoing meds are you having?

@Pyewacket Great news for you too, active treatment completed and you've been out on the train and tube already! Glad to hear that you're ok with the meds, let's hope you tolerate the bisphosphonates just as well.

Best wishes to all. x

 

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Hope you are all doing ok. @Karden how did the first EC - or is it FEC? - go? Hope side effects aren’t bad. And you can start counting down to the end now. @Pyewacket hope that radiotherapy is going well. Do you have far to travel each day? That was the worst part for me. I didn’t mind the 2 hours’ driving each day - it was actually nice to do it after doing so little driving during the combined chemo & lockdown months! But it did get tiring by the end - & it just took such a huge chunk out of each day. Hope your skin holds up well. 
@Shine13 yes radiotherapy was much less tiring than chemo. We are all different but for most of us it is the easiest part of treatment. I have had some soreness around my scar over the last two days but have been using the cream as advised & it feels ok this morning. Other than that no problems. 
Hope everyone else is doing ok & preparing for whatever comes next. I have to collect my 2nd supply of Anastrozole today. Got through 4 weeks with no noticeable side effects. Possibly some aching joints/limbs but these could also just be the result of months of treatment & reduced exercise. I am just ignoring them & getting on & trying to increase energy & stamina levels. I also have to remember to arrange my 1st ‘stand alone’ bisphosphonate infusion for June - keep forgetting about that! 
So far I am not experiencing the post-active treatment slump & gloom that many seem to suffer. Although there is plenty of time - we all know how quickly emotions can flip!! Just enjoying getting on with life & I have a few busy weeks ahead. I had a trip on the train & tube yesterday - quite strange after well over a year but at the same time it just felt normal. 
Will be good to hear how you are all getting on when you have chance to update us. xx

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Hi all,

Well look at that @grannyp over the line first! Well, apart from the years of other stuff of course, but that will just become the norm for all of us I suppose. The tough stuff is now in the rearview mirror, congratulations!

I have 2nd Covid jab tomorrow, and commence 3 weeks radiotherapy on Wednesday, going to be exhausting I think but it'll fly by. Probably do me good to get out more too to be honest, I go for my walk daily but a wider view of the world is probably due.

Oh the secondary chat rooms... yes I went there a few months ago too. I'm hoping that rather morbid couple of hours will help me keep motivation going to fill my life, rather than idle through it. Despite this experience I can see it being so easy to just slip back into complacency and waste time that could be better spent.

Hope everyone has a good week, Pye xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13 No more chemo - great news!  Good luck with the lumpectomy, mine went really well and I'm nearly 5 weeks post surgery. The wounds have healed well and although I have some cording to the arm, it has responded well to the exercises and much improved. I would urge you do the exercises everyday as advised even if you don't get any cording as it makes a huge difference to your recovery

I have also been enjoying the freedom I currently have - pub meal, buying new clothes, walking with hubby and friends, eating my favourite foods. 

I am signing the consent form tomorrow and start on Thursday. My final cycle will be on 1st July and it is marked on the calendar with a big red circle!

Onwards and upwards! Love to all. 😊

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp I'm really pleased that you're now able to start moving on and getting back to the more normal activities that you must have missed.

You should definitely start thinking of booking a holiday, you really do deserve it. 

The other treatments will become part of your routine but I don't think it will interrupt your life anywhere near as chemo did.

Best wishes

K x

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

 

Chemo finished at last and feeling quite good this week.    Back in Friday for Herceptin though.  Getting out a lot now with the sun and bars etc open outside so life felt close to normal this weekend.    I have a lumpectomy planned on the 17th of May and not quite sure when the bone stuff and hormone treatments kick in.

 I say avoid the secondary chat rooms as things get of perspective really quickly.  Emotions are not very logical, and you can find yourself catastrophizing convinced the cancer will come back that has no basis on the real risk, early breast cancer has good survival rates.

@grannyp  sounds like all good news from your camp.  Did you find RXT much less tiring than chemo think I will be having 3 weeks end of June after surgery.

@Karden  Hope the FEC is not to bad I had EC before Taxol and was not to bad manageable.  If anything, I found it easier than Taxol and most people say the other way round.  Hope your treating yourself before it starts abit of respite before the next phase.

Good luck for anyone in surgery this week that might be @Guest user 

YouTube have some cancer school videos that I have found really useful,  especially surgery considerations.  Just search "cancer school" it is northern Virginia a man with grey hair.

xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Oops, I went to correct my spelling & somehow managed to post instead!! 
I was going to say that I have heard good things about Moving Forward and really should find out more. I am looking forward to getting back to some of my pre-BC life, especially my dance & yoga classes which should be up & running again in 3 weeks. And like everyone as we come out of lockdown just living life. I am not sure at the moment how closely I want to analyse & reflect on what has happened to me over the last few months & I sort of feel that I owe it to myself & my family to just enjoy some ‘normality’. A holiday would be great as well - need to do something about that!!
I think I will just see how things go & whether I need to consider any help etc with getting on with life. I know that I have certainly moved on a long way from the dark days of my anger & resentment whilst having chemo. And I will definitely still be checking in here to see how you are all doing. Take care everyone xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi all. And thank you @Karden and @donkeywoman for your kind words and good wishes. Yes, my mood didn’t stay low for long. I totally agree with @donkeywoman that we have to just roll with the waves - and, yes, I am sure there are still done big ones out there waiting for us. 
Final radio all fine and dusted. I have so many check ups coming along in the next months, plus the first ‘stand alone’ bisphosphonates in June, that I don’t actually feel as though I have finished treatment! But I am very happy to get my days back - rads did take up a huge amount of time. 
I have heard good things about the Moving Firwars

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone, 

Hope everyone is doing as okay as possible, especially those who haven't posted for a while. @Pyewacket it's never good to hear that something 'can't be treated' but I guess now everything is treated several times over, so as you say, the chemo should have got it all already... Will think of you this week, biking it over to Sheffield through glorious Derbyshire. @Shine13 and @PaulineS27 - well done on getting to the end of chemo, hope the last one hasn't been too unkind...

@grannyp - last radio tomorrow - fabulous! Well done you, and I'm delighted to hear that you have coped with it so well. Ah, I have avoided the secondary threads. As @Karden says, it is horrible for those women, but I don't think me reading them will help, especially as I tend to feel slightly over-involved in their stories. It's not surprising it led to you feeling low. I think most of us will have those moments - I remember early in chemo, wailing to my husband 'what if I go through all this and it still comes back?'. I am still trying to roll with the waves, which fortunately, for the moment, are quite gentle. But I'm under no illusion that there will be rougher ones along the way... I hope your mood lifts and you can enjoy the end of radiotherapy. Do you have any more fun trips planned? It's still quite hard to plan too much, isn't it? Although now that you have had your second vaccine... I'm looking forward to getting my second done (4th May) - a week before I start my return to work. 

@Karden I wonder how you are doing? I really take my hat off to you for the strong, calm way you seem to cope with setbacks. I'm sure you don't always feel calm and strong, but you do seem to have an ability to move on from stuff as well as always looking out for others on this forum. I've been thinking of you and, like @grannyp really hope that your next lot of chemo is manageable. The Moving Forward course does sound interesting - do you know if you can sign up while still having Herceptin? otherwise I would have to wait until after December and I'm hoping to have moved on by then! I should have a look myself. 

Thank you, I'm feeling pretty good. I spoke with the Consultant on Friday and my Hb is up to 102 (from 87) so that's a good result from a unit of blood. It was a useful conversation as he reminded me that the tumour was 'quite aggressive' (his words) but that my lymph nodes were clear and surgery got it all. Useful to me, to remember that this has been a difficult few months and that is not surprising. But my quality of life is definitely massively improved!

all the best to everyone xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp It's always lovely to hear from you. You sound like such a wonderful lady and I'm so pleased that you have reached the end of your active treatment. Good luck for the future, you have got through your treatment and will start to feel better about everything soon.

I too have read posts about secondary breast cancer and wish I hadn't. Whilst you feel very sorry for those affected by it, I don't think it's advisable or useful for us who are dealing with a first time cancer. It's natural to have dark thoughts about the future as nothing is 100% certain but we have to focus on the fact that survival rates are so much higher these days and there's every reason to believe that we will be able to enjoy a long and cancer-free life.

Have you thought about signing up for the Moving Forward course with Breast Cancer Now? I've read excellent reviews and I think I will sign up when I finish active treatment.

I hope you keep popping into this thread as I would like to keep in touch. xx👍

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

@Pyewacket Sorry to hear about the blip with your radiotherapy. The little twists & turns keep on coming don’t they, even when we arrive at what is supposed to be the easiest part of our treatment. As you say, the chemo has already done its worst on the whole of our bodies & the consultant will have carefully weighed up any risks against benefits. Good luck with your rads. Hopefully it will all be easy & fingers crossed you have no problems with your implant. 
@Karden I think it is this week you start on your extra chemo? Hope the side effects aren’t too bad & you can retain your positive outlook throughout. 
And @higgi I think your surgery is imminent? I do get a bit muddled up with just what everyone is doing, so hope I am right & hope all goes well. 
Hoping that @PaulineS27 & @Shine13 are feeling ok following the end of chemo & looking forward to moving on. 
And @donkeywoman hope you are continuing to feel well & to build up your strength & energy

I have my last radiotherapy session tomorrow. Can’t quite believe it. I have continued to have no skin reaction or any side effects that I am aware of other than some tiredness. Also had my 2nd Covid jab on Friday. Don’t think I had a reaction this time but between that, radiotherapy & Anastrozole I have no idea where any little niggles are coming from😂
I have had something of a down mood today though. I have been pretty upbeat & getting on with normal life & looking ahead but I inadvertently stumbled on posts online from secondary sufferers & got drawn in to reading them - normally I wouldn’t as no point worrying about what something until it happens. I went into a real downward spiral convincing myself that I have very little hope of any future. As we have all said, it is amazing how quickly our moods & emotions can dramatically change. I have picked up somewhat now - some gardening & terrace cleaning helped! - but that was a very dark few hours. 
Anyway tomorrow is another day - & my last day of active treatment!! 
Have a good week everyone & best wishes to everyone having any treatment xx

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Good evening everyone,

@Karden My dreaded dental visit turned out to be straight forward thankfully! I'm so sorry to hear you're in for more chemo sessions, the PICC back and all the hassle that will entail. I hope you can try and focus on the really positive news, that your lymph nodes are definitely clear.

@Guest user bless you, that feeling of grief washing over you out of nowhere is just awful, imminent doom is hardly fun either. Thinking of you, and don't feel any worse about things for having yourself a pity party, you're allowed.
 
@PaulineS27 & @Shine13 - ah the last session and the blessed PICC removal! Glorious! 
 
@PaulineS27 I had immediate reconstruction, prepectoral implant. Very happy with the choice - happy to answer any questions and go into as much detail as you like here or via direct message to save bogging everyone down with the description of my new breast, who i have named Julia after my surgeon 🙂
 
@donkeywoman Glad you're perking up, so nice to have a day out - my exploration has peaked so far going to Sainsbury's in Matlock to pick something up. It was SO strange to be in a different place - surreal to be excited just to wander into an unfamiliar supermarket. Good job we've decided not to go abroad again this year, think it would be a sensory overload after the last 12 months!
 
I'm back on the Tamoxifen now having stopped it for my chemo, so far so good although I want to confirm with them that the deteriation it causes in my eyesight won't be permanent (didn't even realise it was the tamoxifen until i stopped it for chemo and it improved dramatically, thought it was just age creeping up on me). After today's visit to the dentist, he's replaced the filling that disembarked during chemo and given the all clear for bisphosphonates which I'll have for 3yrs - when the get around to removing my pesky ovaries anyway.
 
The radiotherapy consultant rang and said having looked at my scan they are unable to safely treat the lymph nodes near the breast bone as my lungs would get too high a dose. I'm a bit gutted about that as my lump was situated very close to my breast bone, so I can only hope that the chemo will have dealt with any cancer cells lurking there. So I start that on the 28th for three weeks. Now it's all fingers and toes crossed that I'm not one of the unlucky 20% who suffer capsular contraction of my implant... there's always something new to fret about isn't there?
 
I've been making the best of the sunshine we've had here the last few weeks, my bald head looks slightly less horrific now it's seen a little bit of sun. Hope everyone else has too - very jealous of @grannp's zoo visit, must put that on my agenda post-radiotherapy. My other good news is that my latest 'Fit Note' is for 4 months - so don't have to worry about returning to work until August at least, feels like a weight has been lifted off my shoulders, if only for a while.
 

Take best care of yourselves everyone, Pye xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Good evening everyone. @Karden , I am really sorry to hear your news. You certainly are more than entitled to feel down about having to have more chemo. It is definitely the part of our treatment that we want to be rid of and to have to go back for more must be a dreadful feeling. You will in time accept that it is all for the best and that the medics are just being extra cautious to ensure that you don't have a recurrence in the future. But I know it will take time to fully accept that and in the meantime just go with your emotions and rant/cry/scream or whatever you want to do.

@higgi Isn't it awful when the emotions just hit you like that out of nowhere. I am sure we can all totally identify with how you are feeling and I really hope that your mood does improve soon. I think the enormity of what we have been through and the knowledge that our lives are changed forever just hits us out of the blue and that really sudden change of mood takes us by surprise, making everything seem even worse.

I am pleased to hear that you had a good break in Tenby and hope all goes well with your surgery. It will be much easier than chemo and I am sure that the ongoing treatment will be fine.

@PaulineS27 hope the final chemo went well & @Shine13 hope all goes well with your final treatment on Friday. I expect you both thought this day would never come!

@donkeywoman so pleased to hear that you are feeling brighter and that your energy is returning. A few 'normal' days sounds just great! Hope the blood test shows the right results. When do you start on your Herceptin? I am sure that and the hormone tablets will just become part of your life and not disturb you getting on with life.

I only have 3 radiotherapy sessions left now - almost there!! I am definitely feeling the tiredness more now but don't know whether it is down to the radiotherapy, the effects of the Anastrozole tablets that I have now taken for over 2 weeks or just the travelling each day. Or possibly the lack of sleep which may in turn be due to the hormone tablets!! Suspect it is a complicated mix of the whole lot! Will have to wait for a week or so after radiotherapy ends to assess any side effects from Anastrozole. 

I had a lovely time at the zoo - it is really a local wildlife park, rather than a real zoo but ideal for our 20 month old granddaughter with lots of smaller animals and the all-important children's play area!

We are all now heading off in different directions with various types and combinations of treatment - surgery, chemo, rads, targeted treatments, hormone tablets etc - but do hope we will still check in here and let each other know how we are getting on and support each other with the next stages of our treatment. xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

@Karden I am so sorry to hear your news. What a blow. Of course they are just being cautious and it's that approach that is saving lives. But the thought of having to go back to chemo must be very hard. You will of course have as much support on here as you want,  but you are also allowed to be upset (and p'd off). I know I would be. Sending hugs xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Karden I am sorry to hear your news about more chemo, it must be a blow but I know from seeing your posts that you are so good at taking things in your stride and as you say it is a treatment plan to stop it coming back and I know all of your wonderful exercise will help you through it. You will be finished in July so August will be a month to celebrate with a little break away, hopefully in the sunshine. Sending you love x

I am seeing the plastics team tomorrow, can I ask if any of you wonderful ladies have had reconstruction after a masectomy? If so what did you have? 

@Pyewacket I hope your radiotherapy is going ok.

@donkeywoman and @grannyp and everyone I just wanted to say a big thank you for always posting and keeping us going, even when some of us get times when we just read the posts but don't feel like posting or commenting x 

Hope you are all doing well 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13 Yes, I'm trying to focus on the fact that they're being really thorough with a belt and braces approach.

I know I will get through it but it's hit me hard emotionally just when I thought I was over the worst part.

I don't think I'll be ditching the wig any time soon. x

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@Karden

 What a blow to go back to chemo, must be hard to take. I suppose best to blast with everything now.  In the olden days they just used to take the tumour out first and had no idea how the tumours responded to chemo at this way they are been very thorough.

Karden
Member

Re: HiRe: December 2020 Chemo Starters

 Meant to ask after everyone else too.

@donkeywoman  Hope your blood test is good. I bet you enjoyed your trip to Bakewell and meeting your friend - I am a big Seasalt fan too. Did you buy anything?

@Shine13 @PaulineS27 Hlad you're at the end if chemo and PICC coming out, it's a painless process and I've enjoyed my 4 weeks of not having it.

@higgi It sounds like you had a good time in Tenby. I understand your low mood and negative feelings. I suddenly feel like crying and wonder what the future holds. We have all been through so much and it's been a huge psychological trauma too so we should allow ourselves to have bad times but try to focus on the positive. There's a lot of online support available if you feel you need it. I'm going to sign up for the Moving Forward programme when I eventually get to the end of my treatment. Details are on this Breast Cancer Now site.

@Pyewacket hope radiotherapy goes well for you

@grannyp how are you getting on with the radiotherapy? Did you enjoy your trip to the zoo?