#4 of 9 today. Flipping nurse who bobbed me in the chair went to get a trolley to canulate and....... forgot about me.
One hour 15 minures later she came in to update a colleague on the patients in the bay (all snoring or talking on phones 🔊 or themselves) and I was: "Hello! What are we waiting for?"
I do wonder why they give appointment times just before their huddle.? Bet others get forgotten too. But I did choose a corner chair and joked about putting me in a corner!
Well she then got a vein up by my little finger an absolute treat and pampered me all afternoon. Annoyed I missed work team leaving drinks - even our colleague in Texas gets stuck in, even though it's only her breakfast time.🍹 Hey ho, it's 5 o'clock somewhere.🤣
I've eaten like there's no tomorrow since I got in. Might have to take myself to bed before I pop. 🐋
Happy long weekend. Hugs to everyone. 🤗
Love AnGELa x
Had Pax number 4 of 9 yesterday. Initially bloods very reluctant to come out of port but thankfully after several flushes they did. They would have been able to take blood from a vein if they’d had to but they would then have had to do something with the line which would have taken an hour so am glad that didn’t need to happen.
I explained all my symptoms from last week. Like you @Teagold have the tingly fingers on and off and told them about the light headedness too, bleeding nose, red knuckles etc. They told me just to write it all down snd let them know if it is any worse next week particularly the tingling as they may have to reduce the dose if it gets worse - think it’s neuropathy they call it. Re light headedness they said to make sure I am not dehydrated and that my bp may have dropped that day though it seems to be ok when I am at hospital. If it happens when I walk I have to sit on a wall for a few minutes then take my time standing up. Loads of places to do this as I walk in a fairly residential area. Another nurse said my red cell count was down a bit and that could explain it too. She said not to worry but me being me as soon as someone says this I do 🙈. My appetite wasn’t great last week so will try and eat more meat and fish this week. Don’t fancy a blood transfusion if I can help it though that would be a last resort. Good to know others have the bleeding nose which although sounds ridiculous is so reassuring for me. That’s the beauty of sharing things on the forum. The nurse also said to me to look out for other signs of toxicity as the effect of the chemo is cumulative as we know. Happy days!
I tolerated the cold cap again. I looked a picture with a shower like cap underneath it this time. Nurse suggested it to be less harsh as now for me it’s about encouraging the regrowth- not that there is any sign as yet. Difficult to tell as I did not cut it all off so it’s hard to know if the wee strands on top are new or broken off from my original hair. I still have some hair at the sides and back. First 30 minutes of the cap still the hardest but I have now tolerated it 7 times so with 5 sessions left am going to try and stick with it.
Have split my working hours for one day a week over several days and it has helped give me a focus and feel more “normal” so will do the same next week.
Massive hugs to all.
@hopeful1974 it’s good to hear from you, been wondering how you are - glad to hear you are through the op and taking it v easy, sorry to hear about more waiting re the lymph nodes etc but fingers crossed this doesn’t need to change your plan. Big hugs 🤗 and get loads of rest.
@Gelbel that’s really rough re your mum, we all need people around us at the moment who can boost us up not bring us down, or at least go along with whatever mood we want to be in. I’m getting increasingly sensitive to what other people say and I think it’s why I’m keeping myself to a relatively small group of people who I know aren’t going to upset me with careless words. I hope you feel better after a rant and sounds like you’ve got amazing mates backing you up. This whole thing has really shown me how awesome some of my friends are - and not necessarily the people I would have expected to really step up. Life’s like that sometimes isn’t it.
Was expecting a rough couple of days for s/e and bang on schedule the last two days have been pretty grotty. Didn’t leave the house yesterday just stayed on sofa. Still feel SO lazy and guilty when I have a day like that - can’t change the mindset. Also been feeling quite tearful but sort of in a good way like I need to get it out of my system, if that makes any sense. Hopefully a bit stronger today as back into hosp for #11, if bloods let me - hemaglobin was low last week so 🤞 for improvement.
@Kaz11 / @Gelbel just to say also I’ve had the bleeding/runny nose thing with Pax for weeks - nurse said it was normal and I’ve just got so used to it I’d almost forgotten it wasn’t actually normal. Tingly/cold fingers and churned up tum too ✅ but still finding hula hoops and tuc biscuits keeping nausea at bay.
Hope everyone else is doing as ok as poss this week.
OMG @Kaz11 I have the exact same side effects, including my nose. Except a bit more than a bit of blood. All rather messy. My onc nurse said to keep my nails moisturised.
Nothing massive but just enough to know I'm not 100%.
Thanks for yours and everyone's understanding re the old trout. Husband did speak but decided not to say anything. She'd claim she'd forgotten anyway. Hey ho. I asked my pals to adopt me - they've all offered though I have to sleep in at shed at ones. 🤣
If it's the bed you want @hopeful1974, go! It's what your body is telling you.
Love to everyone.🤗
I notice that when my anxiety goes up, my stomach becomes much more unsettled too. It was hard to tell what was from the anxiety and what was from the chemo. I am now on antidepressants which I am hoping may help with the anxiety over the long term. Lorazepam helped with the anxiety too, but as we have discussed, I’m not sure that is something they like prescribing long term.
So glad you are through the op ok. Think you deserve to be in bed today - pottering can wait. You have had major surgery after all so take it very gently. You deserve humongous amounts of TLC.
Sorry to hear about your lymph. Hopefully as you say it won’t involve a treatment change but keep us all posted.
@Gelbel that’s rotten re your mum - as they say you can pick your friends but not your family. Hopefully your husband can relay to her how hurtful this is to you. We need all the positivity we can get right now so these kind of comments are unhelpful. Like you my friends keep saying to me that I only have a few weeks left of chemo provided my bloods are ok. Sending you massive hugs.
I have to be honest have not felt as good this week after the Paclitaxel. Like you @Gelbel my tummy has not been settled this week but have had quite a bit of anxiety and that always plays havoc with my tum. Also noticing a few other physical changes like red knuckles on my hands at my forefinger and middle fingers. Seems a bit bizarre but probably skin drying out again. Bought the MooGoo udder cream which I hope will help. Also a little blood when I blow my nose in the morning. Nose running a lot too which I was told would happen as hairs will come out there too so nothing to catch the liquid. Slight tingling in my fingers too. Will tell the nurses tomorrow about it all. Not major things in the grand scheme but noticeable differences from first 2 weeks.
On the plus side have done a bit of work this week which has made me feel a bit more normal.
Take care everyone.
That sounds really tough re your mum. As you say, you can’t pick your family and it would be nice if they could be as supportive as your friends are. I find I have to put a brave face on for my parents and can only tell them positive things. They never want to hear the hard stuff.
My op went well but the surgeon did have to remove all the lymph nodes as the biopsy showed cancer in one of the sentinel nodes. I now have to wait three weeks to find out if there will be any change to my treatment plan. I really hope not as it is long enough already!
I hope all you wonderful ladies have a good day. I am supposed to ‘potter’ but feeling like being in bed really!
How are you doing @hopeful1974? 🤗 Comfy and pain-free and managing and being waited on hand foot and finger I hope. 🤞
How is everyone else? I'm still slightly 'aware' of my tummy today. Apart from that physically I am OK.
I need to rant - I can't get this negative comment out of my head. My mother is a miserable cow - she can't say anything positive about anything. Example: her grandson is taking his driving test soon - cue doom and gloom about him being on the road and she's not happy to get in a car with him. Simple - don't then!
So I mentioned to 2 pals yesterday that come Saturday (1 May) I can say; "I'll finish chemo next month." Obviously all being well and I don't have to miss any weekly cycles for whatever reason.
My pals were made up - really saying how quick it's gone/going, how we'll I am doing etc. ❤️ The Eeyore that gave birth to me said; "Assuming they've not messed the doses up." 😭 😡
I let rip. This is a woman who when asks how I am, if I have any little side effect, delights in telling me it'll get worse as chemo goes on. No matter how many times I tell her no it won't.
I think I'm going to have to ask my hubby to call her today and tell her how I feel. I'm still fuming from this conversation that happened at 6pm yesterday.
Family - you can't pick them.
All the very best for tomorrow @hopeful1974 sending you love and will be thinking of you.
hope you have all managed to have a comfortable weekend .
sending love 🌈xx
@CrazyCatLady / Sam lovely to hear from you. Sorry to hear about the dental issues though and hope it doesn’t get worse and that you can get that sorted quickly. Totally identify with what you said about eyes, have noticed my vision changing in last couple of months - I was on the cusp of needing reading glasses (I wear contacts for short sight) and now I’ve had to get some cheapie ones from Superdrug until I can get to the optician. All these extra things we have to think of and like you say feels like ageing before ready for it! Good that you’ve been managing to get lots of healing rest and sunshine therapy with your daughter.
@Linda1967 sorry to hear you’ve had tummy troubles, paclitaxel (I think it’s the same as taxol?) can make my tum v sensitive too. Trying to manage as best I can with what I’m eating and lots of water.
Went for a walk in the sun yesterday and came home with very rosy sunburned cheeks! Been so concerned about covering up the bald patch I forgot to put on suncream - doh! - and skin is obvs more sensitive. Tbh makes a nice change from the slightly yellow tinge that chemo seems to have given me... Aside from that, the steroids are keeping me on a relatively even keel this weekend though they kept me awake in the night and seem to make me hypersensitive to noise and light. Bracing for the hangover/crash on Tuesday/Wednesday but gets easier as you know what to expect.
Anyway, just wanted to pop on here and send big big hugs to you @hopeful1974 - will be thinking of you tomorrow and please do let us know how it goes when you can. 🤗
Hope everyone else doing ok and enjoying as peaceful and relaxing a weekend as possible.
That's interesting @Kaz11, I feel my whoozy/light-headedness today. Though it's not as bad as last week. Funny how you had it yesterday and your Pax is a day before mine. Mind you, I did quite a bit of nipping about to various shops yesterday just to get bits and bobs I hate being without. I did nothing after 5pm and wasn't watching the clock for bed time.
@CrazyCatLady/Sam glad to hear some things are under control. Not nice hearing about your teeth, I hope they don't get any worse. Let your dentist's receptionists know you're on chemo, they may be able to squeeze you in, certainly flag to the dentist. Mine did ahead of starting Biphosphanates and they've brought my check-up forward so the dentist can see how mine are doing after 2 infusions.
You're beating me on the hair in length - I'm stuck at 1" and eyebrows and eyelashes just about gone.
Sorry to hear you're suffering @Linda1967. Have you tried the ginger biscuits? They are my #1 go to for any tummy feelings. I suspect you will have done.
My team aren't too bothered about any neuropathy I might have but I need to let them know my nails have started peeling... from the bottom.
Ahhh, battery dying on me.
Wishing you good luck for surgery Sian.
Hope everyone is having a good weekend.
I’ve been having pain for a couple of days ... seems to be in area of intestines. Cramping, tender and bloated. Spoke to nurse who said it can happen on Taxol that they may try one more and if it persists change me onto something else.
Hope it resolves as ok other than that.
take care everyone . X
Hello all my lovelies....sorry I've been quiet again but sleep seems to be my new hobby! Can't seem to keep my eyes open these days....but guess it's what my body needs. Thank you for thinking of me @Kaz11 and fortunately I'm feeling pretty OK 🙂
So good news is that they've dropped my carboplatin so now just the docetaxel & H&P to get through and had C4 on Thursday. Only 2 more to get through now, so getting there 🙂
So far, so good for day 4 post C4, and so glad that they sorted out my antisickness - ondansatron are definitely my friend this time 🙂 Still getting rotten indigestion but lansoprazol doing the trick for this.
One weird thing that's been happening is my left foot and left hand are 'twitching' but not painful just like the muscle under the skin is vibrating/rippling (like when you have a TENS machine going). Guess it could be that starting of neuropathy perhaps so something else to check with onco on my next call. Also got very tiny bit of numbness in my left thumb and index finger but think this may be down to the ganglion cyst on my left wrist which I've had for years!
My eyes are also completely shot now....so blurry and fuzzy and having to actually take specs off to see/read anything...ugh! So it's been a bit tricky going through all the posts - so sorry if I miss anything.
Oh and then there's my teeth and gums 😞 Dox has a lot to answer for! Seems like my gums are receeding at a rapid rate and despite using interdentals, flossing, corsodyl mouthwash, plus Genegil to use on my gums, they are getting really bad and think I'm on the cusp of peridontal issues. Got dentist booked for July so hopefully they can reverse the effects...but may give them a call next week to see if there is anything else I can do. Gonna get myself a water pic flosser too so I can get better access to the back teeth but just hoping I don't end up needing bloody dentures! Not ready for this at 53 😞
Anyway, enough moaning....I've had a couple of lovely days sat in the sunshine with my daughter and enjoyed being outside rather than huddled on the sofa. Also put up a baldy pic on my FB timeline so my true look is now out there for all to see. TBH I can't be bothered with all the covering up and doing make up at the moment - so you'll just have to take me as you see me, and I'm fine with it 🙂 It is what it is and it will only be temporary. Currently getting new 1.5" strands of grey coming in now, so catching up with @Gelbel 😁
@hopeful1974 good luck for tomorrow and hope all goes well and speedy recovery xx
@Kaz11 oh know what you mean about the lightheadedness, that's what did for me in previous cycle. Hope it's settled down for you now xx
Good to hear you've been bashing away at your work issues and hopefully they will all be sorted out soon for you (if they haven't already). Go you power girls!!
@Linda1967 glad to hear you're doing betting on the pax and good luck for the next one.
Hope you all enjoy your Sunday today and you all have a good day with as little side effects as possible....mine are kicking in again now so off for a pre-dinner nap lol 🙂
@hopeful1974 as you say let us know how you get on tomorrow. Will be thinking of you.
Nice day here again so heading out for a walk shortly however going to take it easy today as think I overdid it a bit yesterday. Think because I’ve felt ok last couple of weeks I felt normal-ish then bit light headed yesterday so got a bit of a fright.
@CrazyCatLady how are things with you? Just checking in as have not seen you posting for a while and just wanted to check you are ok.
Thank you very much, Angela. I’ll keep you all posted as to how it goes. I may be home tomorrow night or on Tuesday morning, depending how it goes.
I hope you all have as enjoyable a Sunday as possible. Siân xxx
Good luck tomorrow @hopeful1974. I'll be thinking of you and sending lots of good healing wishes. 🤗
All you other ladies, enjoy your Sunday and may you be side-effect free or as comfy as possible. 👌
Love AnGELa x
Enjoy the sun today it’s lovely here too. Getting all the washing done and out to dry.
Wishing you all the best for your surgery on Monday. Will be thinking of you.
Sending big hugs
I really love reading all your posts, ladies. It really makes me feel like I am not going through this alone.
@Teagold, I know what you mean about all the surgery options. My surgeon and nurse really tried not to sway me while presenting all the options. I did come to my own decision in the end but it was tough! Everyone has different priorities. I am now looking forward to just getting it done on Monday. I am supposed to be self-isolating from now until then so that is a bit hard when I live in a house with my husband and two teenage children! I am doing my best, though, and think I can sit outside for a lot of the day.
Hair-wise, I have a thin covering now which I had buzz cut after round 2 of EC as so much had fallen out. The little that is now left does seem to be getting longer again (my last chemo was on 12th March). Of course, it will come out again once I am on Paclitaxel and Herceptin but I am debating whether I should still persist with the cold cap just to keep what I have if it helps the regrowth.
I hope you can enjoy the sunshine a bit if you have it. I mostly sit in the shade with sunscreen on as my skin is still sensitive but it is good to be outside.
I’m off for breakfast now and then plan to read on my sunlounger! I hope you all have a good day. Siân xxx
Just heading for my bath shortly too!
The hospital recommended Nioxin hair products for when my hair comes back as they help to thicken it up. There are different systems. System 2 would be the one for me as it is for natural hair with progressed thinning as I don’t have much left. Although my hair is coloured it had grown so much in lockdown that the stuff at the top was pretty grey. System 1 is for light thinning.
You can get the products on Look Fantastic or amazon. There is a trial pack of shampoo, conditioner and scalp treatment on Look Fantastic for about £34. However the nurse yesterday said I would also need the hair/follicle booster which is not in the trial pack. It is a white/purple bottle. It seems to be sold out on Look Fantastic and is expensive at around £40. However I see it on amazon for around £30 though it may be a smaller bottle.
Feel like I have had to spend a small fortune thanks to BC between wigs, polybalm for nails, eyebrow/eyelash serum, turbans and headbands and now hair stuff but if it helps my hair come back I will suck it up as my hair means so much to me. I have also bought a paddle brush to stimulate the follicles on my scalp when the time comes too.
Thx @Gelbel - hats off to you for managing a 12 hour work day! I’m impressed - a couple of video meetings nearly finished me off on Weds!
Your post just now made me think of that nursery rhyme about the little girl with the curl in the middle of her forehead 😂 .
Weirdly feel less wiped out tonight after treatment than the last two Fridays even though today was pax with a carbo chaser rather than single shot. Must be the steroids they gave me. Surgeon appointment was good - she really took the time to explain it all and answer questions, crikey there are a lot of options and things to consider. It’s like a new project - I’ve got to read a load of info and then meet her again early June. Surgery likely end July or early August. Luckily my husband is a teacher and with the kids being on summer break I’ll have extra pairs of hands at home to fill kettles etc. She also gave me a boob prod and said initial lump now barely palpable so will keep this in mind when the side effects kick into gear in a few days when steroids finish, the drugs seem to be doing what they need to do.
Just had nice hot bubble bath to defrost my ice-capped head and shan’t be long out of bed. @Kaz11 what are those haircare products? I’m up for any recommendations.
hope everyone ok and fingers crossed for good nights sleep all round
Haven't said what else I've had. Only a mall bowl of protein granola before chemo, biscuits with a cuppa in the chair, oat cakes and cheese when I got in, Thai green curry and Chinese special fried rice thanks to Waitrowe, bit of chocolate, a bag of French fry crisps and the scrap ends of hubby's chips from his curry.
I did manage the dates on their own.
Could do something else but can't think what. I'll see if hubby eats all of his - no calories in food from someone else's plate. 🤥
And I wonder while I'm piling it on. I'm barely exercising as I hate walking.
If it’s any consolation my eyebrows now quite sparse and eyelashes starting to fall out too. Nothing like adding insult to injury eh? Nothing growing on my head yet unfortunately.
Feeling ok today after being wiped out last night post treatment. At least your snacks sound healthy. I have the munchies tonight - a crunchie before dinner, a snickers after, some jellybeans and now percy pig better watch out 🙈.
Well done you re work sounds pretty full on. I’ll just stick to my one day a week to start with!
No plans for the weekend either.
Forgot! Eyebrows gone and eyelashes thinning. 🤬 Thanks Pax... not.
But, my hair's growing. I have some that are 1" long and I've a little curl in the very pale blonde 'fringe' over my right eyebrow. 👊
Nowhere else is growing. 👏
Look at us Legal Eagles! Go girls. Bah humbug to GP receptionists... though ours are very good with me and if I do get the rottweiler behaviour from them, I ask for a call back from the nurse practitioner who has on my notes I can ask for that at any time! She'll then sort anything and liaise with others.
It's our busiest time of the year at work and I'm gutted I'm not in the thick of it. My boss has brought me into the project team for a 17k people virtual event for my creativity. 2 stonking, creative ideas added to the activity pot.
Be care what you suggest - I now own both bits, which, after a bit of digging and looking at the art of the possible, have been added to the week-long agenda. Hence I did a 12 hour day yesterday and 3 before I left for the hospital today.
Like you @Kaz11, I sort of look forward to Fridays. Who'd thought it! How are you today? I felt pretty wiped out quite soon after and the salty/off milk month taste has already kicked in. Going to have a little pig out on some dates I a bit.
Then a nice sleep (til the small hours no doubt) in brand new bedding with a brand new all seasons wool duvet. Our 7.5 tog feather one was getting a bit warm and, it's that old, the feathers were starting to poke out - most uncomfortable. Can't wait!
Mind you been a busy week - went out for tea at a pub on Wednesday. It was a tad cold so we whizzed through hot beef and onion, and pork and apple sauce baguettes with piles of home made roasties and lashings of gravy. First meal out since October.
No wonder I'm tired.
How's everyone else? @Teagold great news on your scan. Please try not to worry about EC too much. Your team will do all they can to make it as side-effect free as possible. And we're here for you. And @hopeful1974 for your op.
Right, dates call. Might wrap them in pancetta. 😋
I hope you have nice weekends planned. Nothing planned here.
Love AnGELa x
For info the number for McMillan in relation to work rights is 0808 808 0000. You can also look up online. The lady from BCN said I was best to call McMillan as they have people specifically dedicated to dealing with emoloyment rights. Having had any cancer diagnosis we are now classed as disabled so are protected under the equality act from discrimination. Employers need to consider reasonable adjustments re returning to work so hopefully this will help me in relation to travelling which I have to do sometimes with my work. Failure to consider reasonable adjustments is discrimination. I would give them a call. The lady I spoke to was so understanding and helpful.
I know what you mean re the hair. I pretty much wear my gym wig every day now except on my hospital days when I put my wee turban on. Never thought I would have to wear a wig as thought the cold cap would be my miracle hair preserver but not to be. It worked so well for someone else I know just sadly not for me. Have thought about giving up with it several times too as still shedding. Every time I look in the mirror au naturale it makes me sad but the only thing I can do is keep trying to persevere with the cold cap and hope it encourages the growth. Also going to order the nioxin hair products as recommended by the hospital for when it starts to come back.
Feeling better today thank you.
glad to hear the work plan is becoming clearer and interested to hear about the Macmillan and BCN help you’ve had as I may need to call on them at some point - my work have been great so far but I’m also getting involved now in a few projects and just need to find the right balance of what I can manage and not taking on anything where I might then let them down if I have more rough days when I move onto EC.
I’m also keeping going with the cold cap although I feel I’m starting to look like one of those characters from Little Britain, can’t remember whether it’s Lou or Andy. Never go out now without a cap or hat, having never really been a hat person. My daughter had a friend over in the garden yesterday and I kept my cap on the whole time so as not to embarrass her! It’s good to hear that one of the benefits is regrowth further down the line as I have had moments thinking maybe no point carrying on given how much I’m still shedding. But I don’t find it too uncomfortable and last week my nurse also put a little bit of cotton between the cap and my scalp because she was worried about the cold giving me a headache and it did help with the comfort.
Hope you’re feeling ok after treatment yesterday. I do find that even on my pax only weeks I come home feeling completely wiped out - can’t even really have a conversation with anyone - and a hot bath really helps (especially if my head is still defrosting!), but usually feel better the day after.
Also meant to say am persevering with the cold cap although I found it much harder yesterday. I know it encourages hair regrowth so sticking with it at mo. Nurse is going to try an extra layer for me next week by using the scrubs like cap the surgeons wear in theatre. She says the cold will still get through but it may make it a bit more bearable for me. I still have some hair at the sides and back but little on top so it hasn’t worked well for me. However I know I will lose the last remnants if I stop so trying to keep going. As the nurse said for me now it’s more about stimulating the follicles for the hair growing back rather than preserving hair. Will see how it goes.
Know exactly what you mean @Teagold I almost look forward to my Thursday treatment day too as it’s another chemo crossed off as you say and a day nearer the end of treatment. I also feel reassured from seeing the nurses. As one said yesterday some patients become friends and that cheered me up.
I had Pax no 3 of 9 yesterday. Having had no effect from the Piriton in week 1 I am certainly feeling the effects of it each time now so felt completely wiped by the time I got home yesterday so it was a bath and an early night for me after my dinner. As someone said I would have been more apprehensive on the first week of Pax and didn’t know what to expect so maybe my body more in alert mode and so didn’t react to the Piriton then but have since. Enjoying a soak in my bath each night but finding once I am out of it and jammies on I have a massive menopausal flush as a result of the heat - can’t win!
I spoke to the senior nurse yesterday re do’s and don’ts now things opening up a bit up here. She told me still to avoid the shops for now which I have been doing since December. She said that I could go to a cafe and sit outside and when people are allowed into houses mid May that I can do that. I too have been walking with various different friends individually and we have both been wearing masks each time. Nurse said we don’t need to do that now as the covid cases have decreased so much. Like you @Teagold much as I have been desperate for these things to happen I feel quite nervous about them now. One of my friends was delighted re the mask thing as she said wearing it walking in the heat and with flushing was too much. It was only for an hour at the end of the day and I felt like saying try going through everything I’ve been dealing with but that just sounds ungrateful but sometimes it annoys me I have to be honest.
I had a red rash on my arm for over a week following covid jab 2 which was also itchy. It was all around the vaccine site and was a bit hot too but I checked with the nurses at the hospital yesterday and they said not to worry about it. I had no other side effects thankfully and in another week or so I will be at the 3 week point where the increased protection kicks in so that is good and will hopefully feel more confident about doing things.
Am going to start doing one day wfh next week. I may split it over a couple if days but have a non time specific project to work on so hoping that will help focus my mind on other things. Will see how it goes. Had to get it signed off by GP which was not straightforward. Not the line itself but I was told that I couldn’t get a phone appointment to discuss it until May so had to use econsult form on their website which just happened to be “down” when I tried it. Eventually sorted on Monday. It was a one size fits all form which didn’t completely work for my query. Doc then replied with a question which they told me not to answer on econsult so had to phone surgery anyway! Stroppy receptionist then took message for doc after looking up my record. All could have been avoided with a 5 minute telephone appointment 😡😡😡.
Also spoke to lovely ladies here at BCN and then McMillan re my work rights. McMillan sent me lots of info by email so bottom line is workplace need to accommodate adjustments to me returning to work. Won’t change the 6 month only pay situation which I can’t do anything about but at least I am now armed with the “legals” so have the backup info if I encounter any issues though hopefully not.
Nice day here but still cold out of the sun. Have a good day everyone and good luck with your next Pax @Gelbel
Happy Friday everyone! Although Friday is “treatment day” I weirdly am coming to sort of look forward to them as it’s another treatment ticked off ✅. Today is #10/16 (assuming all goes ahead ok as no injections this week and my neutrophils always plummet when I’m off them).
@Rainbow70 thank you for asking after my oncologist appointment. It was very reassuring - scans seem to show that the chemo is working and things are moving in the right direction. Can’t tell you how much of a boost that’s given me and made me feel stronger about taking on the rest of it, especially as I still have the dreaded EC cycle to come.
After all the excitement of going in for scans and talking to my oncologist - which made me pretty twitchy at the end of last week and over the weekend - today I’m seeing my surgeon to discuss plans/options etc. I have to admit that I’ve been so focused on the here and now with getting through each week of chemo I feel a bit ignorant when it comes to surgery and don’t know what all the different types of reconstruction mean or pros and cons etc. In any case I know it’s likely to be a double mx for me because of the gene mutation, so I’m mostly just concerned to know about recovery times and what I will and won’t be able to do (will I even be able to put the kettle on if both sides out of action?!).
Reading back this week’s posts and totally identify with the feeling wiped out after human contact! I’ve done four or five work meetings this week - trying to stay involved on a couple of projects - and one conversation which went on for an hour and half almost triggered me needing to lie down in a darkened room. Now that things are “opening up” again more friends have been in touch wanting to come and visit or me to go see them etc etc and as lovely as it is I don’t feel quite ready. I’ve been seeing two friends regularly for walks, who have both been amazing, and a few others have been texting very frequently which is great and beyond that I don’t know that I have the energy for more socialising. Is that pathetic? In any case I haven’t had my second covid jab yet and been told I should still be “semi shielding” as the first one doesn’t give same immunity as it normally would, so I’m using that as a bit of an excuse at the moment to stay in my little bubble.
@hopeful1974 been thinking of you - how are you feeling about the op next week?
Hope everyone is doing ok and making the most of the sun and extra vitamin D!
Glad to hear from you, Alice. I hope you are recovering from the portacath removal op and are able to get some rest. Sending love. Siân xx
Linda1967, that’s great that it is better than EC for you so far. I hope it continues that way and that your body gets used to it so that you actually feel better with each week. That happened to a friend of mine with Paclitaxel, so fingers crossed!
So far for me it’s better than EC. Had a bit of reaction to first taxol. Face got very red and slightly swollen but nothing major. My tummy is a bit unsettled and I am much more sleepy than is normal for me but overall ok. 12 sessions sounds like forever knowing that the side effects get more as time goes on but the sun is shining today so making the most of that.
Thinking of and wishing you all a good day x
I’m a prime sufferer with being bunged up atm and I’ve been having awful indigestion too, one seems to exacerbate the other! I took lactulose two days after my last chemo as that seems to be the start of the danger zone and it worked and usually I don’t need to take any more after that ‘uncorking’ urrggghh, sorry! but then the indigestion reared it’s ugly head and ended up when nothing else worked taking some more lactulose and no more indigestion!! Hurrah! In answer to your ? Yes I’m feeling more whoozy post chemo than usual, it could be that I’ve got an open wound from the portacath removal so my body is trying to recover from chemo and heal too, who knows?! So on the constipation front I’ll try to do the same next chemo cycle but probably somebody will have moved the goal posts by then! You have to laugh or you’d cry eh?
I hope your tea in a beer garden went well and you had a lovely time ☺️.
@Gelbel glad you enjoyed having your friends over and you did well lasting four hours . Probably is also down to shielding the tiredness and obviously everything else you are dealing with. Glad you had a good sleep.
I get what you mean about feeling more woozy when bunged up . EC and pax is excreted through urine /bowels so we need to keep things moving. Not missing the red wee from EC now I’m on the pax im managing to drink more fluids.
Good your getting checked over on Friday regarding your finger tips. How often are you having your bloods checked ? Rest up today and I hope you feel well enough for your meet up tomorrow .
@teagold I hope your oncology appointment went well on Monday , sending love .
@hopeful1974 @so pleased you have date now for your surgery and your appetite has improved .
Thinking of you all
I'm glad that you've heard back from HR and they are being reasonable(ish). I hope the McMillan team have added advice.
Sunday was lovely, but tiring. I threw the girls out after 4 hours. I can't believe how quickly the time went. I was beginning to flag. A colleague said that she saw pals over the weekend after shielding for the best part of a year and was cream crackered too - so it might not have been wholey chemo tiredness. I slept 11 hours solid. 🦥
I did nothing yesterday as I was a teeny tiny bit whoozy. Mmm, it makes me wonder if my body thought: "Pah, you were well enough to workyou shirker" as I feel really quite whoozy today. I had a telephone check-ups and they're going to check me over on Friday as I've very mild neuropathy. My tips of my fingers feel like I've trimmed very long nails - though I've not cut them. Hubby offers me his shirt buttons to make sure I'm dexterous.
Question - not to be read if you're eating! If you get bunged from chemo, do you find you feel more chemo fog/brained/whoozy? I ask as I have been (or not been - until mid am) this cycle and am not feeling good today. Though I picked up a bit afterwards. I could make a case for this looking back at my notes - especially EC #2 when I was very whoozy from day 3 and didn't go properly for a good few days after the actual chemo. Nurse said could be likely - toxicity not worked its way out etc.
Be interesting to know. I'll keep on top of that in future.
If I'm feeling up for it tomorrow, a few of us are meeting for our tea in a beer garden straight after work.
I hope everyone is feeling as good as possible. 🤗
Please excuse any typos - awful time thinking how to type what I want to say!
Love AnGELa x
Hope it has gone well, Linda. Please let me know as I will be on the same regime in June. Thanks, Siân xx
good luck @Linda1967 for starting your paclitaxel today and I hope you are feeling ok after your treatment yesterday .
I feel slightly better now that I have heard from HR. Even if all my sick leave is used up I won’t have to take annual leave for my medical appointments and the single days I work will be added onto the end of the sick leave date so to speak. I also have my full year’s annual leave allocation to take so I could take a couple of weeks at the end which will extend the paid time off too. That said I just spoke to a lovely lady from BCN who has pointed me in the direction of McMillan for advice re rights at this time so am on the case!
That is the same anti sick med I have too. So glad you are feeling not too bad after the Pax. I have number 3 on Thursday. Long may it continue for us all that we feel a bit better on this regime - touch wood.
Weather a bit better here too so have arranged walks each day with friends as it helps so much.
@Kaz11 I’m glad you have had a response from your email to HR , how do you feel about it ?
First pax done once they got cannula in after 3 attempts 🙄 never had that problem before !. Fell asleep for a bit during infusion, think it was the piriton . Only take home meds I got this time are metroclopramide no injections this time so really pleased about that. Don’t have any nausea / dizziness like after EC so keeping 🤞🤞keeps that way .
hope you are all managing to enjoy some of this lovely weather . Hope you are all feeling ok and good luck to those having treatment this week.
lots of love 🌈xx
Im also starting paclitaxel today plus herceptin. Yesterday was pertuzumab.
Hope we all do well and able to enjoy this beautiful weather.
All the best with your first Pax today. I am sure you will find it kinder - long may that continue for us all.
I have not had to do the injections so far and have now had 2 cycles of Pax. They said if my cells are ok each week I won’t need to inject so fingers crossed! I thought my 2nd vaccine might have had an effect and that was my worry last week but my cells were ok. Interestingly though I developed a red rash round the vaccine site a couple of days after the jab. It’s still there but seems to be fading a bit now. Was itchy too. Only take home meds I have had so far on Pax are anti sick incase I need it and sachets of stuff to rinse my mouth with if I get ulcers.
Had another email from work today in response to my queries so if I work single days which I am looking at that will be added onto my sick leave and extend it a bit which is something.
Big hugs for you today.
so sorry @Kaz11 you have this extra pressure on you from work. Hopefully when you ring the helpline they will be able to advise way forward . I hope you are managing Ok with the weekly treatment , I have my first paclitaxal today so hoping and praying side effects are kinder !! Do you still get prescribed filgrastim injections whilst on weekly ?
Sending love 🌈xx
Good morning lovely ladies
Thanks so much all of you for your tips and advice I appreciate it so so very much. That’s the value of this forum that I have found so beneficial getting a virtual hug and advice from people experiencing all this who just get it.
I am not a good traveller and never have been since childhood (my family used to joke that 5 miles away from home in the car and I was already feeling travel sick!). I get similar medication to the one you mentioned for flying so can use this if need be. I have just tried to hold off using it as I am only ever prescribed a small amount. As you say it can be addictive so they don’t want to give you much but on my more challenging days maybe I should instead of trying to be strong and deal with it all myself.
I will also look at the number on here and speak to MacMillan re my rights as this time for us all is difficult enough without the work pressure on top. I know it will take some time post treatment to get back on an even keel and be physically strong so that will need to be taken into account.
Thanks again ladies. You are all superstars in my eyes and I can’t thank you enough. Lesser mortals would have crumbled dealing with what we’ve had to and during a pandemic.
Kaz, please do use the number on here and get some guidance about your rights, there is a discrimination law I think where your employers have duty of care. There may also be something that could help you financially too do discuss that, think Macmillan team can advise on that too if you want to look into it too. Hope this helps 💕💕✨✨Shi xx
I had Lorazepam and it worked like magic. Like a happy pill! It definitely helped with my sleep. The problem was that they didn’t want to prescribe it long term (it can be addictive and becomes less effective over time) but I was not told that at the time, so tended to use it most nights before going to sleep. Then they suddenly said they didn’t want to keep prescribing it so I was left in a pickle. That when I switched to the sleeping tablets, which work well too. They too are not meant for long term use but my surgeon has said now is not the time to wean myself off them as he wants me strong for the surgery. I just think I’ll have whatever I takes to feel rested and get a good night’s sleep and I’ll deal with the consequences later on! So, my advice with the Lorazepam is to only use it when needed if they won’t prescribe it for you long term as it is easy to get reliant on it each night. I absolutely loved it though! Xx
Dear Kaz... I’m so sorry reading the situation you are in regards work. It makes me so angry at how some folk treat others.. no understanding or compassion. I’m very lucky to be retired and don’t have the added pressure of working to worry about.
I notice you said you feel anxious. My anxiety can get quite bad too and yesterday instead of suffering I took a tablet that the nurse gave me for these kind of days. It’s called Lorazepam and I only take half which is 0.5 mg oh my goodness I was so chilled out it was wonderful... not something I would take everyday probably but certainly when I’m really anxious, but would be good for you at nighttime to get a proper sleep maybe? I took mine yesterday at 11.am and was fine all day and night.
Be good for any of you ladies actually if you are having an anxious day.
Hope you have a good day/week. Xxx
@Kaz11 V sorry to hear about the HR message, as you say - last thing you need is any other stress to deal with. Really hope you can get it sorted quickly. Totally with you on treatment day feeling chilled - now that I’m used to it, feels like a safe place and the nurses are all so lovely it’s nice to be looked after and not have to think about anything else.
@hopeful1974 thanks for the cling film tip! Currently nursing two painful burns from an overflowing syrup sponge last weekend (hot syrup might as well have been molten lava ouch!) and paranoid about getting infected. Prob too late now for cling film but I’m so clumsy - and worse at the moment - it’s only a matter of time before the next one! I’m glad your surgeon has sorted things so that you don’t have to make a special trip for the biopsy, and fingers crossed all goes ok 🤗.
That’s a great tip re the clingfilm will keep that in mind. Often burn myself on the oven where the ovenglove stops and I touch one of the shelves - ouch!
Usually use my Nutribullet for smoothies which I am going to try again soon. Hadn’t been taking them for a while because of indigestion but may give them another try.
If I ever get through to my doc I may ask about sleeping pills as I was so used to good sleep prior to all this and so am not used to seeing the wee small hours.
Glad your appetite is back as that will help you feel stronger too.