Hi @Guest user Found this for you: BC and employment.
Employers are required to make reasonable adjustments to help you continue to work, return to work, have time off for medical appointments or for continued treatment and recovery.
The jelly beans are the sour ones (mine are from Aldi).
My temples, where wig tabs go, are smooth.
Physio was wonderful - even better than a foot rub. At one stage I was like a cat having a chin tickle - purring and nearly dribbling. Wow - someone massaging me. There's a novelty. I have quite an amount of cording rear its ugly face in the last 2 weeks. The physio and her student did a wonderful job and a couple of exercises every hour should sort it out in a few days. Not helped with a few classic cases of chemo brain:
Me: "Bra off?"
Physio: "Yes please"
Me 20 seconds later: "Ready" with bra still on
Physio: "Lie on your back"
Me: "Is that looking at the ceiling?"
That’s really interesting what you say about the letter from the oncologist as I am getting a bit concerned re work long term. My job involves long/late hours sporadically and travelling to other places in Scotland at times outwith my main place of work. I am thinking that even when my treatment stops I am obviously not going to be 100% and I don’t want to be sent all over the place as I think it will be too much for me but not sure how well it will go down if I say that. I only get paid for 6 months full then it would just be statutory sick pay. Retirement doesn’t appeal to me yet as I feel I still need to keep busy not to mention building up my pension contributions. Maybe I should speak to the oncologist about it as I get nearer the end of my treatment and ask her advice.
Like you I still have a pretty rotten taste in my mouth permanently. Jelly beans - that’s a new one I will add to my shopping list this week! Have had a bit of indigestion again but not too bad and the bowels seem to be normal-ish. Haven’t had the crushing low of EC so far though been a bit more tired the last couple of days but not so much that I can’t do things.
My flushes and sweats have been awful the last couple of days so one minute roasting and then cooler again though like with you it has been baltic here and minus temperatures during the night so heating is on and off like a yoyo at the moment.
Nice for you to see a new face with the physio. I have 2 days to go until the big weekly outing to the hospital for Pax number 2!
Just gave my hair (or what’s left - probably have a cheek to call it hair!) it’s weekly wash. Still some coming out when I comb it and notice balder patches appearing above my ears. What a joy it is seeing myself in the mirror these days. Also think my eyelashes starting to come out despite using the serum. Meanwhile my arms still have a yeti like covering! 🙈. I suppose it’s not much wonder that we feel rubbish and emotional at times!
Have a good day everyone
Hi Lottie. Glad you are finished EC
I didn’t find nausea bad, but I did take regular tablets just in case.
on we go to the next step..... nearer to end of treatment.
take care everyone x
My ONC consultant did a 'to whom it concern' letter to my boss for my sicknote to cover 'at least' 6 months and might need extending for another 6. It says the side effects will make it difficult do continue my usual duties. I sort of agreed the wording with her as sort of a way me being able to work when I feel able to. Though TBH retirement is looking more attractive... or going part time.
I'm lucky that I get 12-month's full sick pay and 6 month's half.
I felt a bit rough with steroid withdraw yesterday so I didn't work. I was cold too - it was bitter up here. So I ended up semi-prone on the bed (the sun streams in the bedroom all day from 10ish at this time of the year), feet under the duvet watching Spiral from 10:30-15:50. It was lovely - might make that my next 8 Mondays regime!
I was better, though not 100%, when I got up. Went to bed proper at 19:30, didn't see 20:30 then work up at 5am. Feel just about OK today though - except for that sea-water taste you mentioned, mixed with gone off milk. Yuk. Need to dig out the jelly bean sours!
Physio in a bit - be nice to see an new face. What has my life become?!
Hope you and @hopeful1974 are feeling brighter today. 🤗
Love AnGELa x
Glad to know it’s not just me who is fed up! Like you I am trying to be so careful however I am going to ask the nurses for advice again when I go on Thursday. I am the same re nit being sure what I can and cannot do especially when things open up here a bit more in 2 weeks time. I had been sticking to walking with one friend but as she could only walk certain days I felt I needed to see other people to keep me sane! Have been walking now with other friends - we both wear masks and try to keep our distance as much as possible.
Hoping to hear on Wednesday from my line manager re the work situation. I think it would help me to have another focus as you say as long as I feel up to it. Even if I can’t manage a whole day I could split the hours over a couple of days but will need to see what they say.
I hope you hear about your op soon. Whilst I was nervous before my surgery as I’d never had an op before I found it much easier to deal with than the chemo and was back on my feet quite quickly.
Take care and I’ll update on what I’ve been told I can and cannot do after Thursday.
I have totally been feeling like that - fed up of having to shield and just wanting a sense of normality. It sounds like a bit of work might be a good distraction as long as you feel up to it. I am waiting for surgery at the moment and it has been four weeks since my last chemo. I am feeling a lot better but still not normal and I don’t quite know how careful I have to be either. I had my second jab 9 days ago now, so think that I should be ok but don’t want to take chances. I am seeing quite a lot of different people for walks, which helps a lot.
I hope you find your balance.
Big hugs right back at you too and I hope you get rid of the steroid buzz after a rest today. I keep waiting on something to happen so probably analysing it too much. Hope your hubby is giving you lots of tlc as you deserve it.
That’s good to know you are still going to the shops but at non busy times. I actually had a dream last night about going to Morrisons but you had to do a covid test at the door before getting in for shopping (maybe I have seen into the future!).
I didn’t appreciate from a work perspective how we are classed so that’s good to know. My line manager and senior manager are supportive but they will need to speak to HR. My GP gave me a sick line up until the end of this month so not sure of the in’s and out’s of that if I want to work the equivalent of one day a week. I didn’t ask for my sick line for that amount of time initially but she did it anyway as I am on chemo. Will also take on board re what you have said about a full day being too much maybe so could split it across days and keep a note of the hours. It would also enable me to claw back some sick days as we only get paid for a finite period of time. However that is not the main driver for doing it. As I mentioned it’s more to give me another focus.
Just realised I sound a right moaning minnie today so apologies for that.
Fingers crossed that you feel better by the end of today after resting up. Big hugs 🤗
Aw, sorry you feel like that @Kaz11. 🤗 I do go out to essential shops early or late in the day to avoid crowds. I won't go in if it's busy. Hubby had to shield so I was very careful but refused to stay in 100% of the time. And that's the attitude I'm now taking with me! I've had my 1st jab (AZ) and the second one's mid-late May.
Climbing the walls to go swimming now the gyms have reopened. I guess I won't be able to go for a few more months.
I hope you can do some work. Lay on the need to for your mental health to them. Don't forget they have to make reasonable adjustments as we're classed as having a disability. You can argue a few hours work a day (rather than one full day) is an adjustment. I find full days difficult - reduced hours work for me and my boss let's be me as flexible as I need to be.
I didn't have steroids for home, just before the Pax. It's still enough to set me off! Hopefully it'll be short and not too bad.
Love AnGELa x
I didn’t get any steroids this time after my first weekly Pax so have had no meds to take since I came home. Just got the metroclopramide in case of nausea and sachets of stuff to rinse my mouth in case I get ulcers.
Have felt normalish the past few days. Bit more tired yesterday and anxious. Just feeling a bit sorry for myself and fed up with it all now. Want the treatment to be over so badly - I am sure everyone else feels the same. Also sick of the lockdown and even when things open up here not sure what I will be allowed to do as still going through treatment. Will need to be guided by the medical team. I long to have someone in the house just for a chat and a cuppa!
Hoping to hear from work this week as I would like to do one day a week to give me something to focus on other than BC. There’s only so much housework I can do and am getting so fed up with the monotony of it all. I am getting out for walks with friends thankfully but am finding the days dragging a bit at the moment. I suppose the weekly chemo will help as my hospital visit is my big day out - how sad is that! Even sadder will be the first time I get back to the supermarket- I will be so excited. Not been near a shop since December!
@LottieLaing I never feel nauseous nor ever sick. I take them if I am 'aware of my tummy' which is as far down the 🤢 route as I get. That's why I take so few. Only 31 in 4 rounds of chemo.
How are you today @Kaz11? Deffo on the steroids withdraw whoozy step today. So going to have a lie down lazy day to ride it out.
Hope everyone else feels OK. 🤗
Enjoy your haircuts, large g&ts in beer gardens and battles in Primark if your country is opening up some more today. 👍
Love AnGELa x
Thank you for your reply, that’s good to know. I just had a sore arm for the day after the first vaccine which was the same as when I got the flu jab. Was just concerned as am on the weekly chemo doses now so getting the vaccine just 2 days before my 3rd weekly chemo cycle and it will only have been 5 days after 2nd weekly by the time I get the vaccine. However I need to be guided by the oncologist as you say and she told me last week to go ahead with it. The nurses tell me that my cells shouldn’t dip as much during the weekly cycles so hopefully that will make a difference too. Currently on the first week after my first weekly Pax so monitoring myself daily for the side effects.
Thanks again for your help.
I too had my first jab (Pfizer) before I started chemo. I had my second one on Saturday 3rd April, which was three weeks after my last chemo session. I don’t have any major side effects, just a slight temperature on days one and five and a few headaches.
In the week before your next chemo, your immune system is supposed to be better so it is a good time to have it, according to my oncologist.
I had my second Covid jab last Saturday, 3 weeks after my last chemo. I had a sore arm for a few days and a couple of times a very low grade temperature. A few headaches too. Overall, I didn’t feel bad at all, though. My oncologist advised that it is best to have it in your good week just before the next chemo, so hopefully you’ll be fine.
hope you don’t mind me jumping in ( had chemo July 20)....I’m on citalapram....couldn’t take domperidone due to taking pregablin so had cyclizine and ondansetron for both EC and paclitaxol....never had nausea or vomiting once.....both are fine to take with citalapram.
take good care
@Gelbel @Ah that’s the ones I got this time but they don’t agree with citalopram which I take ... do you still feel sick on them slightly or does it stop nausea? X
@LottieLaing when I said I took 2, it was one in the evening and one the next morning, not at the same time. The tablets I have are Metoclopramide 10mg. Onto be taken 3 times a day as necessary.
Thanks so much @Gelbel
Sounds the same as what they said to me I would be given as it was mentioned it is to prevent it spreading to the bones. Will wait and see when I have to get it.
I have to get tablets too for years (they have called it endocrine treatment when talking to me) likely tamoxifen or letrasole. They have said it is to get rid of my hormones as my BC was hormone positive. Goodness knows what the menopause symptoms will be like then, it’s bad enough now! Like you I will be rattling and to think I barely had to take any medication in the past. Changed days.
Thanks again for the info.
@Gelbel .... hope you don’t mind me asking what antisickness tablets you take when you say you take two?
I got new ones this time but when I checked if the were ok to take with citalopram they weren’t so ive just carried on with the domperidone for now. It’s my last EC so I’m hoping I won’t need them much after this. X
Bisphosphonates are a drug used to help osteoporosis - bone strengthening etc.
Research has shown bisphosphonates reduces the risk of breast cancer spreading to the bones and elsewhere in the body in post-menopausal women being treated for primary breast cancer. It's still in trial and, at the moment, recommended to be taken for 3 years.
Given as IV with chemo every 3 cycles when vit D levels acceptable and as tablets after.
I'll also have hormone tablets for 10 years.
I'll be rattling!
Sorry chemo brain in gear so have another question I should have asked in last post 🙈.
Re bone infusion - is that a bone strengthening drug? I have been told I have to get this every 6 months for 3 years but haven’t had it yet. I thought I would likely be getting it at the end of my 9 weekly Paclitaxel doses but not sure. Can’t remember the name of the drug I’ve to get. My legs are aching a lot at the moment too - never sure if it’s chemo or menopause related or a combination of both.
Thanks for the Pax info. I also had a flushed face on Friday (day after treatment) and wondered what had caused it. Thought maybe the sun had caused it however in hindsight my mask covers the area affected so it couldn’t have really caught the sun. Kept checking forehead in case I had a temperature but that explains it. Have sent away for sunscreen for face anyway.
Thanks so much.
That's it in a nutshell and then some for me. Although I didn't have insomnia. I'd say more severe jet lagged than drunk but I do know what you mean.
Deffo steroids as for last EC cycle only took half of dosage at home and I wasn't so bad but still had a grotty 24 hours (lunchtime to lunchtime) on day 5. As against a grotty 2-3 days.
So my 1st of 9 Pax on Friday. This is what I just this minute WhatsApped to my bother who asked after me with a couple of word changes...
I'm loving the new stuff... so far. So much better than days 1 & 2 after EC. Virtually no side effects at all.... except waking up just gone 2am yesterday and not getting back to sleep. So I got up and did house work at just gone 5! Thanks steroids! Not happened before. I can usually nod off after an hour if I wake in the small hours.
Also had Piriton infused so you'd think it'd contradict the steroids. In a way it did as I was able to drive home... as in hubby didn't need to get a cab to the hospital to drive me home. #result
Slept OK last night. Got a bit of a flushed face/chest - can happen with 1st dose of Pax.
And I had my bone infusion this time so could expect a few aches and pains from one or other but nothing. 👊
Only took 2 nausea tablets Friday night and Saturday morning 'just in case'. Did have one an hour ago as totally missed lunch to go for a walk with a pal. If I don't time eating right in the few days post chemo that's when I feel 🤮
So all good!
End of message.
If you bob on the January 2021 starters thread, you'll see that @Belinda_F thinks 1st Pax is a bigger dose than the rest. Be wonderful if that's true.
All the nurses I've spoken to say Pax so much easier than EC and say EC is not a very nice chemo at all. They only say that when you've completed it.
I hope Pax is a walk in the park for you.
Love AnGELa x
I am due to get my 2nd covid vaccine (Astra Zeneca) on 20th April. I got my appointment for it at the time I got my 1st vaccine. Got the first one ahead of my first chemo. Didn’t have a reaction to the first jab but bit more concerned about the second one in case I do and it affects me getting chemo 2 days later. I checked with the oncologist last week but she said the policy up here is that the only reason not to get the vaccine would be if it clashed with a chemo day. My jab is due on the Tuesday with chemo scheduled for Thursday. I have heard reports that you get a larger dose with the second vaccine but not sure how true that is. Will just need to wait and see but I’ve certainly been told to go ahead with it.
@Linda1967 Hi Linda I just had my last EC on Friday and feeling really 🤢 today .. but I’m glad to be done with it too. I start my new cycle on 30th April. Pertuzumab, Docetaxel and Herceptin.. like you I’m anxious about reactions/side effects but they say it’s the treatment that really hits the tumours hard so it’s good news really isn’t it ? How did you find the nausea on EC ?
linda 😊 xx
I think I noticed on one of your posts a while back that you had some problems with the steroids. I think I did too.
But I dont know if my symptoms on EC were chemo or steroid related. Out of head feeling, irritable, restless,insomnia, over emotional. Drunk in a horrible way ! Were you the same?
I very much enjoy reading your posts, even if I don’t post much myself. You all seem to be doing so well. Finally finished my third and final EC cycle. It was not nice, glad that’s done with. Is anybody else now starting weekly Paclitaxel plus three weekly Herceptin and Pertuzumab? If so, how are you feeling? I start next Monday. Feeling anxious because it’s all new drugs and side effects, but hoping it’s easier than EC was. I’ve heard through the grapevine that these drugs tend to be more tolerable than EC chemo drugs. Wondering if anyone has any experience of this?
Also, I’ve been offered my second covid jab (Pfizer). I felt fine after the first one. Has anyone else had their second jab yet?
Hope you’re all managing to enjoy the weekend as much as possible. Sending love.
@Gelbelkudos on the chicken biryani - I’m really missing being able to eat anything and everything and always having an appetite, curry takeaway was a standing treat but not sure I could take it now. Managed an M&S Chinese last night but even that was on the spicy side for me - so boring to have to cut certain things out that I used to love and of course the booze too. I love a glass of wine but can’t bear the idea of it now. I find the weeks when I get paclitaxel on its own I don’t get the same metallic mouth taste as with the carbo weeks but feel more like I’ve been drinking seawater, everything tastes salty even sweet stuff, but that’s easier to deal with than the carbo aftertaste for sure.
I’m up for a ceremonial team burning/destroying of chemo clothes when this is all over - except that I’ve been wearing one of hubby’s shirts each week (next best thing to having him come with me, was the theory) so not sure he’ll thank me if I torch it!
I’m the same as @Gelbel and am on weekly doses of Paclitaxel so hardly had any take home meds this time. Only one anti sick med if needed and stuff to rinse my mouth with if I get ulcers. Got anti sick stuff via IV on Thursday prior to the Paclitaxel. I was told by the nurses that you need to take the injections and other meds on the Docetaxel but don’t know if that’s a general rule or not. I will only need injections if my cells don’t bounce back in between.
@Gelbel your meals sound fab which is a good sign that I am thinking that way I suppose. I am still a bit wary about spicy stuff but may be brave and try something soon. Ha ha red wee! Not missing EC at all!
Thanks, Angela. I’m interested as I have been told I will have a taxane (so either Docetaxel or Paclitaxel) with my Herceptin for 3 to 4 rounds and I think I’m going to push for weekly Paclitaxel if I can as it sounds more tolerable. I think I am better at managing a low level of discomfort for longer rather than peaks and troughs like I had with EC. X
Hi @hopeful1974 /Sian
Pax is weekly. It's easier on the body that way. Basically you have 3rd doses so over the 9 weeks I get 3 full doses. I'm lucky that I have cast iron guts so my EC didn't affect me that way. Hence my severe steroid munchies has me packing weight on. I lost nearly 4kg post op and got down to my preferred weight but it's had to maintain. No way is it a target weight - I'd look ill that low. Thank goodness there's an ask of government to pass a law to ignore BMI.
Pas is a taxol chemo - no idea what that means! I understand it's always weekly. Dox is the other taxol that's every 2 or 3 weeks.
That is so good that you are feeling good on the Paclitaxel, Angela. Is it weekly or monthly?
Your food sounds yummy and I think it’s better to have put a bit of weight on than to have lost it. I lost 2kg with each round of EC and am only just starting to regain that weight. My appetite went each cycle once I stopped the steroids (which I had for three days).
I hope everyone has a lovely Saturday and that you are all feeling comfortable. Siân x
I hope you are all OK following your latest cycles.
Totally with you on that! It even turns my stomach when I iron my chemo blouse. It goes straight back into the wardrobe so I don’t have to look at it until treatment day. I was thinking of a ritual burning of it too when all the chemo is done however a friend said knowing my luck I would probably set fire to the house so it may end up being ritual cutting up and putting in the bin instead!
Also been nauseated after treatment thinking about what I ate in the hospital so actually took my own sandwich with me on Thursday and it seemed to help. Not sure if it was a psychological thing and am now on weekly treatment but it hasn’t turned my stomach thinking about it this time. Hula hoops in my online shopping order this week!
@Kaz11 I’m doing the very same thing... I finished my EC yesterday and wore the same top for all 3 .. I really want to burn it to be honest 😂.. so may do that and have a wee dance round it in the woods next week. Xx
Glad the first paclitaxels have gone smoothly so far. Mine was ok today though as usual I slept pretty much through the whole thing, probably the anti histamine. Now I’m home I feel totally wiped, definitely noticing the cumulative effects. My neutrophils still look low-ish (nobody has told me this, I’m just reading it in my book) so I’ve got jabs again this week ans I’ll be referring back to the fab list below on things to eat. Basically I think it’s protein protein protein. Not sure how much protein there is in hula hoops...
@Kaz11 I’m in the same situation as you re hair - SO thin on top it looks ridiculous and almost feels pointless to keep going with the cap but since it hasn’t really bothered me too much I’ll maybe do another week and then see. I’ve got a gym wig ready to go ans my lovely cousin sent me a suburban turban yesterday which is lovely.
@Gelbel yes me too re sending hugs to the Queen. So sad for her.
I’m feet up on sofa watching Prince Philip stuff on tv under a blanket, about all I can manage and I hope everyone is warm and comfy and gets a good nights sleep - @Kaz11 I’ll keep my fingers crossed for you sleep wise!
Totally with you on the weeing front. Hadn’t had loads to drink yesterday but as you say with all the fluids and I had 2 flushes too it’s no wonder I was constantly at the loo. Had to get help each time as the nurse needs to keep me attached to the cold cap machine and I was also still attached to my IV so I need to reverse into the loo - it’s quite a manoeuvre let me tell you!
Have felt reasonably ok today but am sure the low will come it’s just a matter of when. Just have to wait and see with this drug how it affects me. Nurses keep saying it shouldn’t be so harsh but I’ll reserve judgement until I have been through this next week.
Wearing my gym wig every day and loving it - makes me feel normal. Didn’t actually believe at the start of all this that I would need a wig - maybe was in denial. Thought the cold cap would work wonders but unfortunately not. I look at pics from the end of January pre chemo when I had shoulder length hair and can’t believe the difference to now 😢. Like you I wear my turbans around the house when I am not going out walking. So glad I got all my head coverings and wigs sorted in advance.
Good luck with the biryani - you are a brave lady! It’s mince and potatoes for me tonight!
Well done on your 1st Pax @Kaz11. How are you feeling? Sorry to hear about your hair.
I had my first Pax today. I had my bloods done on Tuesday so will have the wait next week. 🥱
My appointment was 15:45. I was called at 11:30 to ask where I was- no one had told me/no letter to say it'd changed to 11:00. Thank gawd it was my pal who called as I was a bit rude about the admin. 🙊 I got there at 12:30.
I had the same 8mg steroids but....none to take home. 👊 The lovely nurse put it in so slowly too. So hopefully much less reaction all round. 🤞 I had IV Piriton that I wasn't expecting. I didn't have a sickness brick nor anything via IV. I also had Biphosphanate.
I left at 16:20.
Apart from weeing for England - all the above fluids plus 2 flushes. I felt OK - good enough to drive home. Another 👍
I do feel slightly queasy now so just dropped a Metoclopramide. Having said that I've not eaten much. I don't have anything to eat until 12pm on normal working days so quaffed a quick sarnie before I left for the appointment. My team at work were having a virtual leaving do for our head of department. I did join the chat for a while. Lucky people were all quaffing cocktails - even the girls in the USA. 😲 I shared a photo of my NHS cuppa and biscuits. 🤭
I did a food order in a rush last night as I saw Waitrose had delivery slots and I couldn't be bothered to go to Aldi... so I've a biryani. #ReachesForTheIndigestionTablets
So with you on the time Kaz. We're not far off done - 1st few days of June aren't that far away really. I will have a little break before radiotherapy - the 3 week post chemo and how appointments for the radiotherapy prep work out. We've a little week away booked to see my family and friends but staying independently from 19 June so the timing is perfect.
Welcome @Guest user! I'm a big advocate of wigs! Scroll right down quite a bit and you'll see mine. I'm currently rocking a slightly funkier, shorter version that the nurses were admiring. I know a few other Feb ladies shared their photos. I do wear beanies in the evenings or if I'm not doing anything nor working as I do prefer the lightness on my head.
I hope everyone else who had chemo this week is as warm and comfortable and safe as possible.🤗
I wish you all the weekend you wish yourselves. I want to give the Queen a hug, poor love. 😥
Love AnGELa x
Good afternoon everyone
I had my first of 9 weekly paclitaxel treatments yesterday. It was a long day again - home at 6. Bloods done first and then need to wait 2 hours for results. Had IV piriton which they said would make me drowsy - it didn’t. Thought it would help me last night too - it didn’t. Starting to think a sledgehammer is the only thing which will give me a sound, long sleep instead of the hourly/2 hourly burst. Anyway also got an antisickness drug beginning with R but can’t remember the name - it was IV too instead of the giant Emend capsules this time. Actual Paclitaxel was titrated (I think that’s right) so went in slowly at first then it took another hour for it to finish. Good news was I didn’t have much take home medication. An anti sick if I need it and stuff for my mouth if needed too but no injections. Will only have to take them if my cells don’t recover enough in between sessions. Cold cap then on another hour after which is getting harder to tolerate as I have so little hair left. I am like Max Wall now with hee haw on top but still some at the sides. So that’s one down, 8 to go. I know what you mean @Teagold like it’s never ending. 18 weeks sounded like an eternity at the beginning and I still have 8 to go if all goes to plan but am trying to see it that I am now on the downward slope of the chemo hill. Oncologist also indicated that I will start my radiotherapy straight after chemo with no break to get it over with unless I want a break. Likely to have 5 or 10 sessions after she has checked my pathology report again. She also said they were all so proud of me so immediately burst into tears as soon as she left the room!
@hopeful1974 I didn’t have a choice re lumpectomy or mastectomy as I had 2 areas of concern they said so had a mastectomy on 18 December. Re reconstruction I only had the option of an expander implant as they said I didn’t have enough excess tissue from my back/stomach to reconstruct that way. Everyone is different but I didn’t want to wake up with nothing on one side so opted for the reconstruction/implant. It meant everything was done under one anaesthetic as I didn’t want another op either. I was also told that it was easier to do at the time of my mastectomy as if yoh leave it until later the skin settles down and more stretching is involved getting the reconstruction later. However that might just have been in relation to me/my skin so be guided by what your medical team is telling you and then you can decide based on all the info you have been given. With the expander implant a port is inserted under the skin and fluid is injected in via there to inflate the breast. It is just like getting an injection and I had 4 inflations prior to the start of chemo. It has to stop while getting treatment but can resume later. A general anaesthetic is required to remove the port once all the inflations are complete but I have been told it is only a 20 minute procedure.
Take care everyone.
So, I can have a lumpectomy or a mastectomy. I don’t like having the choice! I can have immediate or delayed reconstruction.
#8 - wow. That’s a real achievement. I know what you mean about it seeming never ending. My treatment is probably going to go on until November including a few Herceptin treatments on their own, which at present seems a long way off. I am trying to take it week by week and not focus on the end just yet. It might change anyway! Keep going, Tg. You’re doing really well. Xxx
@hopeful1974 hope your appointment goes ok today 🤞
Just got to hosp ready for #8 today (fingers crossed bloods all ok as neutrophils v low last week but have been injecting all this week). I’m starting to feel like this will never end! Can’t imagine life ever not consisting of hospital appointments and feeling knackered etc.
I just realised this morning that I wear pretty much the same clothes every week when I come in for my treatments and I wonder whether I’ll ever want to wear them again after this. Can’t remember who said they were going to burn all theirs but the same thought went through my mind this morning.
hope everyone is as ok as possible andy anyone else having treatment or appointments today hope all goes smoothly
Yes, it is so good to feel like you are not alone. Even when my husband and children are around, it can feel very lonely as I have to put a brave face on for them.
I’m off to hospital now to meet my surgeon who will tell me the date of my surgery and all the details. I will be restarting chemo plus Herceptin after the op. Hope everyone has a good day. Xxx
Thank you for the lovely welcome,
It has been great to read all your posts, as terrible as it is that we are all going through this, selfishly, it is heartening to know we are not alone! my family have been so amazing but nobody can really understand until they have experienced the overwhelming nature of our situation. My poor husband keeps telling me it doesn't bother him that I'm losing my hair, I have to take deep breaths to stop myself screaming "But it bothers me!!!!!". At the moment I resemble something like a cross between Gollum and a Gremlin! In the beginning I envisaged my self, looking really cool, rocking the scarves and turban look.......the reality is so different! I am actually considering a wig now!
I had my third cycle of EC last week and agree with a lot of you that the side effects are cumulative. I have one more this month and then on to the weekly one, (forget what its called) which I am really hoping is kinder!
All your positivity and endurance is inspiring!
Hi Alice/ @Leftygurl - so pleased to hear it’s done and you’re home but crikey what a drama even on the day! Well done for having a stern word with the doc about all the mix ups - I probably would’ve bottled it and then been cross with myself for not saying anything. Also seems unfair that you were put in position of making that decision about the wound during the actual procedure - you really have been through it with this whole episode and I really hope that it’s not too painful now and that everything starts to improve. Must be so nice to be tucked up in your own bed again after this horrific week. Rest well and big hugs - eat lots of hula hoops and I will do the same in solidarity!!
Hope everyone doing ok - I’m really hoping my carboplatin hangover recedes enough today to be a bit more active, I have basically been a total sloth all week. The carboplatin really knocks me sideways but tomorrow I’m back to a single shot of paclitaxel which is easier all round.
Thanks everyone, so update.
The Radiologist removed the portacath yesterday although there was a lot of confusion between the staff yesterday morning on the ward as the Oncology doc was saying they have been unable to book me in and then the next minute my nurse popped in and said don’t worry you are booked in, the Doc then put his head round the door and apologised saying he didn’t realise that the ward staff had already arranged it! I went through so much stress in that ten minutes that an HCA was taking my blood pressure at that particular moment and it had gone sky high compared to earlier! So, I said to the Doc very sarcastically “ don’t you guys talk to each other? And don’t you look at patients notes, I thought that this is standard practice “ as you can imagine I was fuming! My nurse wanted to know what he said to me and although she didn’t comment I could tell by her face that something had gone on 🙄
The procedure itself was so painless I couldn’t believe it compared to the installation although the Radiologist said the tissue underneath where the portacath laid does not look healthy and that is where the infection is so the Radiologist asked me what I wanted him to do, whether to close the wound and risk any residual infection not being able to drain risking more intervention but no scar or leave the wound open so it can drain but more risk of a scar? What a dilemma and a difficult decision that I had to make while i was laying there!! After much discussion I opted for leaving it open with the option of plastic surgery in the future if the scar is horrific. The radiologist once a dressing was on said that if it was him in the same situation that I’d made the correct decision so that was a relief 😊
Im so glad to be home back in my own bed typing this. If someone last Tuesday had of said I was going to spend a week in hospital I wouldn’t have believed them!
So the rest of the week off now with more oral antibiotics to take and strict instructions to take it easy from the lovely nurses at the Macmillan ward in Medway hospital, they really were amazing, always professional but incredibly caring and supportive, even in the middle of the night when I broke down 😞 and I can’t thank them enough 🙏🏾
Btw @Teagold yes!!! Hula hoops, I can’t get enough of them after chemo cycles either lol
and welcome to @katiem too, hope you’re doing ok today 😊
Oh @Leftygurl so sorry to hear about this, must’ve been really frightening for you and your family not to mention horrible to be so poorly. I really hope you were able to get it removed today and that you will be feeling better and stronger very soon. Big big hugs to you.
@katiem - hello to you and welcome to this lovely group which definitely keeps me sane, how are you doing with treatment so far?
Hope everyone else doing ok - I’m on exactly the same carboplatin side effect schedule as I was three weeks ago and basically feeling that revolting steroid “hungover”, twitchy, jangly-headed, mouth like I've chewed through electrical wires etc etc etc - but all exactly as anticipated and easier to manage this time as I’m getting used to it. New favourite anti-nausea snacks: hula hoops - can’t get enough of ‘em! I reckon I could get through an entire 12 x multipack in one sitting.
Big hugs Tg xxx
Jeez that’s horrendous what you have had to go through. Hope it is removed today as planned and you start to feel better as a result. I know you had been counting the days to get it removed prior to this so hopefully knowing that it is gone will make you feel better in yourself. Sending you a big hug. Take care.
hi @Leftygurl so very sorry to hear that you had to be admitted into hospital. I hope you are starting to feel better after the iv antibiotics and hopefully get discharged soon so you can be home with your family 💕I hope the line has been removed today as planned 🤞. Thinking of you and sending you a virtual hug .
Blimey @Leftygurl that sounds horrific. Such a pity they didn't listen to your concerns before. Glad to hear you are on the mend and the blooming thing is coming out. Wishing you a full and fast recovery from it all. x