Catching up with further posts, light and love to MBJ and Nettinoo.
Edinbird how are you?
Implausible, Trixielady and Ocean21.
All stations go on this end from the early hours.
H1 up to London as his mum is in hospital ( as of last night) surgery for her this morning. She is 84 and a lovely lady. We all have to stay strong . Can do, can do ⭐️
Susie I was just about to reply to things and ask about the hormone status... you’ll have to let us know when the results come in but the main thing is it’s all taken out and more chemo which sounds rubbish and you know you were getting it but it’s the weapon we have to blast everything! Remember my lymph nodes didn’t do much on FEC so you might have been the same. Good job they’re all away. CP now is that Carboplatin and Paclitaxel or just Carboplatin with the second p being the platin? I’m not sure. I think most people on my forums have Paclitaxel weekly but I might be wrong... I see so many different chemo treatments there it can be hard to keep up. Let us know what you’re having, we’ll be here rooting for you and sending love for every single one.
I had an ECG yesterday too (because of the drugs on my heart trial) but mine was fine - MBJ do let us know how that goes too. Does your heartbeat feel weird? That must be the worst bit if it does. Sending love to you too.
Pre op was fine but I asked about sleeping stuff and along with telling me I can’t have anything herbal before surgery she also said I’ll have to ask after it. So no more Nytol and I guess I have to struggle for another week! Woken exhausted with a headache today. Considering how much I drank yesterday because of the blood test that’s not good! Everything was explained to me about the surgery - the oddest thing seemed to be the recommendation that I go home without a bra on! I had a yellow vest on and she said just that and a cardigan would do! Then whatever bra I find comfortable, so only non wired if the wire pokes me. So no bras to take home in fact the opposite, no cushions, no drain.
Because I was so hot yesterday I put my hair into a pathetic ponytail! But it led me to discover just how much hair is growing back underneath! Sadly the regrowth on top is not happening at all... wonder if it reacts differently growing back where there was cold from the cap versus where there wasn’t. So I will have three stages of growth once the top gets going. This will be interesting to style!
Good luck Nettie! I need to try and wake myself up now get rid of my creaky feeling in my head and try and do some work xx
Finally read through all the posts from Weds evening until this morning, and just as I thought there was loads. I'll respond to some of the questions later as I'll be doing my usual Tesco shop this morning. I remembered another thing last night from yesterday's appointment which really is making me have that 'deja vu' moment. When I asked if she knew whether I was HER2 pos or neg her reply was I haven't had the results back yet as they've (lump, etc) been sent elsewhere for further tests, exactly what I was told about my biopsy results back in December. She did tell me though that it is highly probable that the results will came back as HER2 neg, which means I'll be the same as you Edinbird, triple negative which is something I didn't particularly want to hear☹. Hopefully you'll understand why. On the one hand I'm not surprised as statistically out of our group of 15 then 2 of us being triple neg would be expected, on the other hand I had read that triple neg was more prevalent in the under forties. So basically I'm back where I was 6 months ago but without cancer in my boob and no lymph nodes, and a completely different hair colour and style, waiting for a CT scan
Anyway after reading all the posts I can see that I am not the only one dealing with things but slowly but surely we will get through all this 💩💩💩. A huge heartfelt thank you for all your kind thoughts which I am sure will help me think of the positives. Have a good day everyone and enjoy the sunshine 🌞🌞🌞🌞🌞🌞🌞🌞. Think we all need a virtual group hug. ❤❤❤❤
Marie, I hope you managed to get some sleep. No wonder you feel so fed up, yesterday’s appointment sounds so traumatic love. Hopefully an appointment at the clinic should come through quickly so you aren’t hanging around waiting and worrying yourself sick. Did the nurse indicate yesterday that it could be a long wait for an appointment? If the Dr was so concerned by your tracing yesterday then surely it would be neglectful if the reasons for the palpitations were not investigated properly as speedily as possible?
Susie, I hope you got some sleep too. Xxx
Sorry to hear your news was s mixed bag today Susie B but the little devils are gone now. Good news about clear margins as I know that's always a worry with a lumpectomy.
I have had a day of it too. Went for my bloods and ECG this morning to check up on my irregular heart beat. Well could not get my top off so had to take my wig off. Then bra had to come off for the ECG. This showed that my heart tracing was anything but normal. Nurse took it away to show the GP then came back and said 'Dr wants to know if you have chest pain', Blinking hell, no I don't thank goodness. So ECG sent off to Palpitations clinic. I get sent home. Probably have to wait months now for an appointment. Is this being a patient lark going to last forever?? Feels like it. One thing after another. I feel like a walking time bomb.
Going to listen to my audio book now, probably the bit I slept through last night.
SusieB just popped in quick to send hugs and love. That Bacardi and coke in the sun sounded just the ticket sweetheart and as others have already said, we are all here for you every step of the way.
I feel there are a few more of you that need a cuddle too at the moment. Wishing you all a restful night. Love you. Xxxx
Ps Blood test early tomorrow to see if last chemo can go ahead on Tuesday. It would be nice if chemo gods could be kind this time but what will be will be. I’m prepared for a delay. Xx
Susie, what a double edge sword, but like the others said hang on to the positives, no more surgery and they’ve got the lymph nodes now, You take care, and remember we are all
here for you 😘😘😘💕💕💕
Oh Susie sorry about your news. Feels like a bit of a kick in the teeth after going through chemo and it didnt work on the lymph nodes. BUT they are gone now which is what you need to focus on. At least you dont need to have more surgery and it was a good job they took the lot in the first place. Is the C in CT the same as the C in FEC. My friend just had 3x CT but we cant work out if it is the same C that I had. I suppose it does explain why they like to do radiotherapy too. Do you know what grade your cancer was?
Hope you enjoy your Bacardi and coke and offload on here as much as you want. We are all here for you. Lots of love x
Oh Susie. Huge hug from me too. What a rollercoaster of news.
You've got to grab on to the positives (hard as that is right now ). Clear margins around the lump is wonderful. And the decision to go for the full clearance was absolutely spot on. Everything crossed for a clean bill of health from the scan so that you can relax. Do let us know when you get a date for that x
I hope you're ok x
Oh Susie, I'm so sorry you had such mixed news. Must have been a big shock for you. Wish I could come and give you a hug. 💕
It sounds like you and your aunt are doing a good job of keeping each other strong. It's good to have people like that. I get a lot of comfort from my great aunt who lives in Holland. We email each other a couple of times a week.
Remember, we're here for you as well any time you need to offload.
Enjoy your Bacardi and a bit of sunshine.
Just popped in to update you all on today's appointment with my surgeon. I'll read all the posts later. I bet there's loads as usual📃📃📑📑. Anyway the news was a bit of a mixed bag so here goes. Firstly, the good news, the lumpectomy was successful and she got clear margins, so no more surgery☺. Then it goes downhill⬇️ As far as ANC she removed 14 nodes of which 9 were positive😨☹. Basically although the FEC did an excellent job of shrinking Gremlin it wasn't so hot on destroying all the cancer within the lump or nodes which fortunately, as I am on a trial, I was sort of prepared for. I wasn't so prepared to find such a high number of nodes were cancerous though. I think that threw me a bit. So she's going to book me in for a CT scan to see if anything has got past the lymph nodes. More scanxiety😦. As far as chemo goes I'll probably have 4 rounds of CT, which is what I knew would happen if FEC wasn't wholly successful. Following on from that I'll have rads, so I guess I'll be the last one to finish what I think of as the basics, surgery, chemo and rads. At the moment I can't really sort out my emotions but that'll come in the following days I'm sure.
Coincidently I received a lovely card from my aunt, well she's actually my dad's cousin which makes her a cousin of some kind. It was was her daughter that passed recently. Anyway she was diagnosed with slow growing bone cancer not long before my own diagnosis. It was sort of expected to happen as a result of her developing non-hodgkins lymphoma around 25 to 30 years ago. One bit of what she wrote sums things up perfectly "You are a very strong and positive girl and like me look at the HITLER with contempt and try and forget about it (very hard I know)". Her Gremlin is called Hitler just to explain. She knows me better than my own mother. I think me and my aunt will find strenght in each other💪💪💪. It's a shame though, that I am here in Somerset and she's in Hampshire, but we keep in touch by good old Royal Mail📨📮😚.
Anyway sorry it's not a very upbeat post but I needed to off load somehow. Going to go outside for a Bacardi and coke while it's still warm outside. Love to you all. As I've said before I really don't know how I would cope without you. ❤❤❤❤❤❤❤❤❤❤❤
Implausible, wow your weekend sounds manic, I hope you get to do it all and don’t feel worn out.
I can also say my breathlessness is all
due to chemo as same as you as bad in and out of the house, hospital anywhere.
Don't forget to take a picture if you get together with Edinbird xx
Seaside, sorry to hear you didn’t get out in the
sunshine during treatment hopefully you got a few hours when you got home in the garden.
Rosina, I’m so
looking forward to colouring my hair again, I’ve got a Cruella DeVill look going on on the right side of my hair, very bright grey
Marilyn, thanks for the idea, I will had in my Turbans which are unworn, like my wig, the biggest waste of money I have ever spent out on, I wish the wig woman didn’t pressure me into buying one so quickly. You live and learn.
Daisydi, I’m glad to hear you had a good night sleep, 💕
i asked my gp for Aveeno and got Zeroveen, which they say is the same just cheaper. I asked for bath and shower one too, and got told to use the oilatium shower oil I’m using to keep are soft, waiting for reconstruction. I told them that I didn’t
want to cook the area as made with Petroleum and we ware parents to keep kids out the sun when using it. They are getting back to me, if I could just talk yo
Gp it would stop the 3 weeks of tooing and frowing 😡
Implausible calls me ‘superwoman ‘ haha. I am knackered just reading her weekend plans 🤪
Last Art Therapy for me tomorrow morning (happy about this) it would have been next week but I want to attend K2s sport’s day. Haven’t been to one since he was in Primary as I would be at work.
Hope to do another training hike on Saturday ( if I am up to it) expecting Horse Tranquiliser to kick in Sunday/Monday. Taste buds are already on the slippery slope.
Re. Aging my hair makes me look 10 yrs older too. Once I can highlight it I am sure it won’t look so bad. All that grey and white! Then there is that wispy, bald patch on my crown. Marlyn you give us hope.
On the plus side money saved from not having regular hair appointments is quite astonishing!!!! Hadn’t cottoned on.
No breathlessness, have managed to avoid it🙏 No swelling either. Doctor did tell me about these SE and she did say they go.
My nails look Ok, but H1 can discern a chemo line in them.
New TV prospects iplayer bbc1 ‘Gentleman Jack’ sounds promising.
Will give it a try.
Flowers for all
Morning, you lovely lot
(that is literally as much as I typed at about 10am, then got really busy, and now it's the afternoon )
So - afternoon, you lovely lot!
Trixielady - that "remember it stays in your body for a long time" warning is so, so true! I'm now 3 weeks 2 days out from my last chemo (past the stage where I would have been due for the next one if I was still going), and I am still utterly beaten down by it Had a short walk at lunchtime to Boots (around 2,300 steps according to my Fitbit, so nothing really in the grand scheme of things), and I was so done by the time I got back to my desk, legs feel like they are made out of lead, and I get really out of breath Surely I should be starting to feel a bit more human by now? Pfffft. I do still try to have a walk every day, even if just a short one, but I can't say they are as enjoyable at the moment as usual. More of a slog.
And yes - accidentally catching sight of myself in the mirror all bald and jacket potato like is still a shock - I forget!
Oh Rosina, dodgy cannulas (cannulae?) are the worst! Not surprised it made you cry. Glad they fixed it quickly! Doreen sounds awesome I've been feeling really sorry for myself this week (mainly due to the fact I'm still so exhausted as mentioned above), I need to channel my inner Doreen and cheer up!
Sonia - absolutely ditto! and no Herceptin here either, just the "chemo hangover". My other half said that maybe after repeated doses the body almost comes to expect it - maybe this is chemo withdrawal!
Edinbird - apologies, by the time I actually got around to finding a moment to reply, you will have already had your hospital appt. Blame my work for keeping me busy today! But I wouldn't have been much use anyway in terms of questions to ask at pre op. Or even for your surgeon next week as I can't for the life of me remember needing to ask any questions before my surgery. I think my surgeon was pretty thorough in the info she gave me, so I didn't really need to. Really hope you can get some sleep soon!!! Maybe go for a walk before bedtime to tire yourself out? While the evenings are longer? Although if you are anything like me at the moment, walks are hard work!
Talking of sleep - well done Daisydi on having a decent kip for the first time in ages, you will have to share your secrets with our sleepless ones.
I can't answer for Sonia but my own getting out of breath after the slightest exertion thing definitely isn't hay fever related, as it happens just as much indoors (can only do maybe 10 mins of housework before desperately needing a sit down), and it doesn't seem any different when I am out and a bit sneezy. And I've certainly never felt like this before chemo, whereas I've had hay fever forever. I'm 100% blaming the Docetaxel.
Seaside - sorry to hear they didn't let you sit outside in the sunshine to get over that nasty jab - meanies the lot of them! Hope that your dodgy tummy from last night is on the mend though.
As far as moisturising cream goes, the radiologist at my place recommended Aveeno (sp? I don't have it in front of me) - I've bought a big tub of it (nobody offered a prescription of any sort) - she told me to moisturise the affected area twice a day - once when I get home from rads each day (about lunchtime) and once just before bed. She didn't want me doing it in the morning as I have an early zap time each day, and she said I shouldn't arrive freshly oiled up....presumably to avoid the nasty issues Marlyn had
Glad the cowbell made you smile The Blaze are my Elite team as I lived in Cov for many years (I moved out the year they started work on the Skydome, bad timing)
I'm very jealous that you are in a position to soon need a haircut
Marlyn it must have been a lovely feeling handing over your turbans, and I'm jealous of your hair too
If it makes you feel better I'm still having joint issues, they started when I started on T. My right knee is particularly problematic and seems to be getting worse not better. And, as I've already mentioned a few times, I'm also far from "raring to go". I honestly feel like I've aged 10 years this year in every way, appearance, total lack of energy, aches and pains and dodgy knees..... I really do need to snap myself out of feeling so fed up about it all.
I keep looking at the monthly threads that are a few months ahead of us on here, and they really are reassuring. Those ladies seem to have a lot more energy than we do Running the Race for Life and all sorts! So I'm holding onto that thought with both hands, that in a few more months we should all be feeling a lot more perky
I am now sat at work clock watching until 6pm as then I can go home and pack! Am flying up to Glasgow tomorrow afternoon, very much looking forward to it, and hoping that new scenery will give me a little "get up and go". It usually does. Like when I managed 50k steps around Leicester 2 weeks after my 2nd T dose
Tomorrow evening once checked in at the hotel we're going to go and watch the Apollo 11 documentary in the Glasgow IMAX, which should be amazing. Then on Saturday I'm at comic con all day and looking forward to meeting up with lots of my north-of-the-border friends. Plus my best friend who is from London but it seems I need to go all the way to Glasgow to bump into him Sunday will be the day that involves the most walking around, as my other half and I will be street art hunting. Hopefully I can keep up!!!
Also hoping to maybe meet up with our very own Edinbird but that's relying on her having the time and energy to do the fairly long round trip out to Glasgow and, as we all know, she already has a lot on!!! So we'll have to play it by ear....
And then after all that, I'm being picked up at 8am the next morning for my first rads. Busy busy busy!!!
I've tired myself out just writing it all down
Love to all x
its boring isn't it? That 6 hours drags, I had my 3 rd herceptin today ( stab and go) but they don't like the bone pain I'm getting....
so if it no better by my 4 th herceptin I will be sent for a scan, I'm glad they're keeping an eye on me but I think we're all getting the aches and pains aren't we? Oh...god! Now I have something else to obsess over....
went for eye test yesterday , I have early signs of cataracts ( no signs last year) so...it does make you wonder.......
ref hair growth.....mine literally happened over night...all of a sudden....we'll get there ladies....I handed in all my turbans to the chemo unit today.....felt liberating, my hair is now at the point where it's difficult to tell if it's a fashion statement or illness related....I don't arf get some looks!
Sunny day, but already got jimjams on....flaked on sofa.....I sometimes wonder if there will ever be a day where I feel full of energy and raring to go......oh please let there be!!
Another link for Edinbird. I have only tried the bath salts from this range ( found cheaper alternatives though which were just as effective at my local TKMAX) but you may wish to explore. Looks like they have a sale on at the mo .
This works blend in vetiver into their products. Which is a favourite of mine.
I am at the hospital having my first sub cutaneous herceptin. I'm sorry to say that the injection did sting a lot! I'm fine now though and counting down to 4pm when I can go home. The weather is gorgeous so hopefully I'll be able to have some time in my garden since they wouldn't let me sit outside in the hospital courtyard - spoilsports! They said it would take a heck of a long time time to get to me if I were to collapse, so fair enough.
Last night was interesting in a bad way. I had a bit of a tummyache all afternoon and as soon as I finished my dinner I had to make a run for the toilet. It got progressively worse from there, with me running for it around 8 times between 7pm and midnight. I can only put it down to the fact that I had a boiled egg at lunchtime, although I'm sure it was cooked through properly, so I'm not too sure why it had such an effect on me.
Anyway, time to catch up with you lot.
Welcome back MBJ. Lovely to hear from you. Hope the cruise recharged your batteries and looks like you brought us some nice weather back ☀️ Sorry to hear you had a scary moment with the irregular heartbeat and i hope your cat has recovered from his time at the cattery.
Well done, Rosina on finishing your chemo. Hope the SEs are mild and that your hair stays in tact.
Sonia, glad you've got a start date for radiotherapy. You start the day after me so we can keep each other posted. I asked the radiologists about creams to use if my skin gets sore and they were very laid back about it. She said let's wait and see. I dont want to wait and see because then it's too late, so I went to my GP this morning and he told me to use vaseline. No one is willing to prescribe anything though, which is frustrating as it's always impossible to get a doctor's appointment.
Lovey to hear from you, Trixielady but sorry to hear you are still suffering with breathlessness.
Sarah, that Cov cowbell made me laugh. We used to go to see the Blaze a fair amount when our team was in the EPL and we used to get fed up with the cowbells dinging. However, since our mad introduction of horse heads and cow heads, guess what? We have our very own cowbells! It goes with the theme but I'm sure it drives people mad.
I know what you mean about trying not to be obsessive checking hair growth. I keep inspecting my lashes on my bottom eyelids but there is no action. I need to stop looking. Eyebrow growth is equally slow. As for head hair, it's coming through but because I wear hats all the time, I am not looking at it as frequently. I have booked a haircut in 3 weeks to get it evened out a bit.
Daisydi, good to hear you got some sleep last night. It really helps, doesn't it? I think the next few nights could be a struggle with the heat, so fans at the ready!
Good luck with the pre op, Edinbird. As for questions for the surgeon...I would ask if they're planning to use a drain because it seems to be a personal preference thing from one surgeon to the next. I didn't have one for my first op, was told I wouldn't have one for me second op, only to wake up and see I did have one. It really wasn't needed though so they took it out the same day.
Hope the rest of yoy are OK and enjoying some sunshine.
Love you all.
Morning all, I have just had the best nights sleep for months. I didnt wake up until about 5.30 so I missed out the 2.30 wake up time. Feels really good to have finally had some decent sleep. Sorry Edinbird x
Trixielady I am just over 2 weeks from last chemo and my side effects have been much better this time as I was given loads of medication to take. I am still taking antihistamines but that is all. Think I will continue them for a few more days just in case. My skin seems to be healing apart from the big red lump at the bottom of my leg. Not really sure what that is. I will be having hormone treatment after I think it will be Anastrazole but radiotherapy first. The most irritating thing at the moment is lack of eyelashes and my eyes are constantly watering dont really care much about eyebrows as I can draw them in if I can be bothered.
Sonia just a thought about your breathlessness. It isnt hayfever related is it as the pollen count is very high at the moment?
Hope everyone else is ok. So glad that you are done Rosina. It is a lovely feeling isnt it. Just Nettienoo to finish now. Love to all x
Edinbird, somethings to try re. Sleep.
Start to wind down an hour before your bedtime.
Try a footbath with Epsom salts or lavender oil. Massage your feet.
Hot cloth face cleansing. The hot cloth is very soothing. Any hot cloth cleanser will do ( Asda do a nice one with orange flower, Soap and Glory- Boots- do a lavender one).
Pillow spray (lavender, hops).
Morning xx well I tried a different tack again last night, Nytol - didn’t get me to sleep in the defined time, was still sweaty, woke about 2.30 wide awake so thought I’d try to tire myself out and so stayed awake a couple of hours to see if I could then get back off. Just woke properly now. Feel a bit woozy. It’s not really getting any better 😕 I have far too much on every day to get a doctors appointment so I have my pre op today and I will mention it then in case they can give me anything.
Well done on finishing Rosina! Hope you’re ok next few days. When do I go sick? For two weeks after my operation next Thursday. That’s what the surgeon said I’ll get. And I have had six weeks sick already, every treatment day I was allowed special leave and then I was sick the rest of the week after that, I was grateful treatment was on a Monday and no delays as it meant I could take only four days sometimes although it was seven the first time at oncologist’s recommendation (really didn’t need seven) and six the last two times since T aches were nasty. Plus my couple of days in hospital cycle two. So don’t worry I have been sick! With hindsight maybe I would have gone sick a couple of weeks ago - purely because of my sleep though. Once I get going I’m ok though. Only a few days left to work from home anyway.
So pre op is at 1 but I don’t meet the surgeon until Monday morning. What happens and what do I need to ask? I’ve read the Breast Cancer Care guide so will note down a few questions but anything particularly important I should ask?
Thanks ladies I know you’ll keep me right. I already know lumpectomy and four nodes out, where the cuts will be, and that I’ll have a wire in and dye on the morning and the op the afternoon then home in the evening xx
Just a quick one,
Trixielady, I’m still breathless and struggling when walking and climbing stairs and I’ve only
had the chemo, I’m hoping it doesn’t last too much longer. I’m really fed up
not doing what I want to do. Xxx
Trixielady great to hear from you.
So relieved that chemotherapy is over.
I went to bed at 8.30 and woke up at midnight and then again at 3 am. Drinking loads.
Edinbird, when do you go on sickness leave? You have a good package. Use it. Reduce the stress levels.
Implausible, I was a tearful warrior yesterday. Inserting the Cannula triggered it. It was painful so I said so and it was taken out ( also painful) and then comfortably reinserted- it hadn’t gone correctly into the vein first time round . The nurse was mortified. I said I was emotional to explain the tears. Chemotherapy also makes the veins more sensitive. Anyway it was immediately fixed, and I was happy and comfortable again, but that was the tear tap opened. There were only 3 of us on the ward. I was also in awe of 93 year old Doreen who had come for her jab for her bone cancer - she had driven herself in and was spritely and bubbly. H1 noticed her first and was chatting to her. Slim, no hearing aid, laughing, quick on her feet. I thought I was seeing an apparition. She was West Indian.
🤗 What an inspiration, the nurses love her.
Well done Rosina a big hug from me hunny for your last Chemo but remember it stays in your body for awhile xx
Daisydi its about two weeks since your last Chemo how you feeling?? When do you start meditation?? and what is it??
Sonia28 good luck for your rads xx
Edinbird hope your ok hunny?? Sleeping pills, I'll be heading down that road soon
MBJ hope you enjoyed your cruise and were able to put this barry bc on the back burner for awhile until this heart problem showed its face?? I'm still having issues with breathlessness don't know if its chemo related or herceptin
Implausible totally understand and agree with you about your hair, I find it so hard once i see myself again in the mirror, pleased your son found a clean T-shirt xx
Seaside sar, totally understand about work it happened to me a couple of years ago xx
Susie did i read your having a full node clearance?? That's what i had , I was only in the one night and had one drain for about two weeks xx
Nettienoo not sure what I've missed but i hope you're ok? Something about a mix up?? Will try and read back over xx
Marlyn and Deano hope you're both ok haven't seen a post from you both but maybe i haven't gone back properly xx
Been quite busy at work today (well, working from home, which I think I got away with as nobody asked why I wasn't in the office....) ,which means I haven't been on here and therefore have a lot to catch up on!
Just realised tomorrow will be my last day in the office for at least 5 or 6 weeks. Maybe longer if my surgery gets scheduled very soon after rads. I will actually miss the place.
Nettie I decided you were right about the watched kettle never boiling. And therefore I have not checked my head for hair regrowth today. It took major willpower!!! it really does seem to vary when the hair comes back. Some people in other groups started seeing regrowth as soon as they moved from FEC to T. Others nothing happens until 2 or even 3 months after the last chemo. So I need to develop some patience. Never been my strong point
I did have a little hair related cry earlier though. Son - who if you remember has lost over 8 stone - was looking for clean clothes to wear in his new svelte size, but none of his new smaller clothes were clean (maybe he should pick them up off his bedroom floor occasionally and put them in the wash ). He had a bit of a tantrum about how most of his clothes are too big. I said as he wasn't doing anything special today he could just wear an oversized t shirt and the world wouldn't end. And he then gave me the "you wouldn't understand. I finally feel good about myself and I want to look good in clothes that fit" talk. And I assured him I did get it (and found him a smaller clean t shirt ) then burst into tears out of nowhere. Took both of us by surprise! Then I realised it was because I know I can't "look good" right now however hard I try. So fed up of being so overweight and I miss my "trademark" hair so damn much!!! Ugh. Tears of pure vanity
But, yes, I think that is why I've got so obsessed looking for hair regrowth. I want to see evidence of my hair coming back as then I'll believe that I'm back on the path to being me.
Still Nettie....blooming heck about that mix up with the onco!!!! How scary!! I would have needed scraping off the ceiling too. I'm really glad they sorted it out quickly for you. Did you get that calming glass of wine?
MBJ so good to hear from you. I do hope that you managed to enjoy your cruise despite the heart scare. Do you feel all better now?
As for the infusion vs tablets for the bone medicine, from what I can tell from looking at some of the other monthly threads that are ahead of ours, it seems about 50:50 between the two methods. Not sure what the deciding factor is on who gets what. I did see that the side effects seem to be gentler with the daily tablets, plus you avoid the need for a 3 or 6 monthly cannula. I might just request them!
And I hope your cat is also recovered and settled in back at home. I am very lucky indeed that my eldest son lives about a 3 minute walk away and pops in daily to feed and fuss our cat if we go away. And we return the favour with his cat when he goes on holiday.
Edinbird I'm glad they have managed to fit your interview around your surgeon appt. I'm with the other ladies that you might benefit from some stronger sleeping tablets just for a few days to kick start your sleeping patterns back where they should be. Especially as you have such a busy week ahead
Rosina big congrats on your final chemo, and I'm glad hubby was able to come with you after all.
I gave my cowbell a ring a ding ding for you
I think most chemo units have the same policy as yours now. Our one didn't have their own bell. The only reason me and t'other Sarah had our little party was because we were both finishing on the same day and there was nobody else in the unit that day. So no-one to be put out. We took our own bell
Susie you were lucky to get 2 doctors who agreed on best course of action re lymph nodes. I never seem to get that! Just lots of differing opinions and the decision left to me. I wish they would just tell me the best thing to do....
Glad hubby turned up for driving duty
Hope your son and pals have a great time at Werchter. My assistant at work is there too They always do great street art there as well as the music, on huge piles of lorry containers.
A couple of my favourites from previous years:
I envy your son that he will get to see this year's masterpieces close up.
Yum to home grown strawberries and raspberries!
As for swelling post surgery, I didnt really have any so can't advise, sorry. Possibly because they only took 2 lymph nodes out.
Sonia I hope those pesky ankles will calm down for you soon. Glad you have got a date for rads. You will be a week behind me.
I only just put 2 and 2 together in my head today that I get home from Glasgow late this Sunday and then am being picked up 8am Monday morning for my first rads. Didn't time that well did I. I'll be shattered before I even start!
Night night everyone, hope all of us get a decent sleep
Love to all x
Rosina, well done on completing Chemo 🛎 🔔 🔔.
I rang the radiotherapy ward today, to see if they had a start date for me which they did, I start on Tuesday 9th July, I have a meeting first and then will have my first session, with the talk and radiotherapy they said it will be 2 hrs, she then rattled off times for the next few sessions, and then said did I need a letter or would I remember, er letter needed I have chemo brain !!!
Feet still swollen, wondering if they will ever be the same again.
The weather here has been lovely, although very muggy, so not sleeping well, but then haven’t for a while. The joys of BC.
Hope everyone else is doing okay XX
Hi Daisydi and MJB
Thanks for your replies. Getting rid of 100mls a day puts things in perspective of what your body has to deal with. As I didn't have a drain I had no idea of how much the body is producing. The idea that your body needs to find a new path to drain away makes sense. I know I'll probably find out more tomorrow but didn't want the surgeon telling me off for letting it go too long without getting it drained. At the moment the area is very soft and squigy and not pulling on the wound so I guess it's ok. As for lymphatic drainage massage, I guess that's some thing they'll discuss at sometime.
Thank you both again. xx
Just read Daisydi’s post.
At Lidle carpark waiting whilst H1 gets smoked salmon, mushy and fresh parsley for our dinner tonight.
All done and almost home.
Last one to leave the ward ( cold capped for the last time) . Hugged the 2 nurses I knew, thanked the others . Left a bag of Hotel Chocolate goodies for the team and cried x2.
Felling much better now. Can’t believe I am done.
Not hungry at all but H1 is trying so hard to feed me . Initially asked for tomato soup or pot noodle.
No photo taken, too emotional. Also brain freeze ( that is the easiest bit for me).
Will sleep well tonight , love you all.
Hi Susie B, it takes ages for swelling to go down. I had a drain in for 6 days draining about 100mls day but it was still swollen after a long time. I think it might be swollen again now as the chemo really upset my wounds. It just takes time as the lymph has to find another route to drain away. If it gets really bad I think they like to manually drain it off but I never had that done.
Rosina hope you are now home and tucked up in bed x
My chemo unit has the same policy....I'm ringing my virtual bell for you my love.....if you listen carefully you can hear it! Xxxxx
Update, no bell ringing on this ward. I asked the lovely nurse Kate, she explained that they don’t subscribe to this practice as not everyone here is at the end of their treatment. She laughed when I asked for a frying pan or pot to bang.
Photo is ok though.
So Ladies ring your percussions for me with passion at home. I have an hour to go ☘️
Hi Susie B
Glad your all sorted. Fish and chips sounds lovely. I am just about to face the scales in Slimming World after my cruise 😱 I will let you know the damage later.
As for the swelling after ANC I find that mine is still swollen under my arm at the side of my breast. But don't forget I did have a mastectomy with reconstruction. I went to Lymphoma clinic yesterday and my arm has increased by 5% so I think I need to be more consistent with the simple lymphatic drainage massage.
Got to go now back later. X
Well that's PICC care done for another week. Hubby was well looked after at the hospital as one of the Macmillan volunteers is one of his old work colleagues, who we've known for years. Cup of tea in hand he was happy☺. He 's currently in our study slaving away at his computer - he's working from home this afternoon💻☹. Stopped off to get fish and chips on the way home. Is it any wonder I'm putting on weight☹. Must make an effort to start exercise and diet/healthier eating next week. I did do some tummy toning this morning along with my arm exercises so that's a start I suppose. Our son is on his way to the Wertcher (not sure of spelling) music festival in Belgium. The one where his mates were due to come here for the night. They arrived around 9:00pm, went to bed around 10:00pm as they were leaving around 3:00 am. I woke around 2:50 to absolute silence and thought they'd overslept so I checked Chris's room to find they'd already left. Either they crept silently out, or I was so tired I didn't hear a thing which is highly unusual for me. Anyway at least it will be warm and dry for them🌞🌞 and not cool and wet🌧🌧🌧🌧. So just the two of us this weekend💑☺.
Welcome back from your holiday MJB, good to hear from you. It seems as though it was a bit of a mixed bag. I hope they resolve your heart problem.
On the hair regrowth front, an earlier topic of conversation, mine just suddenly seemed to appear in the pink spaces, which were partially covered by my remaining hair. After almost 11 weeks post chemo it's fairly noticeable, however when I washed my hair this morning the hair that survived chemo seemed incredibly thin and sparse. Hopefully it will hold out for my last two chemo sessions🤞. As for other hair it's returned everywhere except under my arms which is just as well since I have to leave my surgery arm alone. Mind I'd you forgotten how painful epilating can be, ouch!
Oh, while I remember, how long did it take for the swelling to go down after partial or full ANC? Mine's still swollen after 12 days which is what I expected, just wondered how long it could take to go back to normal.
Can't believe it, the clouds are finally clearing away☁️⛅⛅☺. Quite timely since I was just going to in the garden and see if any more strawberries or raspberries are ready for picking.
Long may the sun shine too wherever you are☀️☀️🌝🌝🌞🌞
There was loads of talk yesterday regarding node clearance be it total or partial. On my part I was lucky in that both my oncologist and surgeon were in agreement on full clearance, so that decision was taken out of my hands. It seems that whichever path is taken they both cause anxiety as to whether it's right or not. What if some cancer is left when only some nodes are taken? What if cancer returns in the same breast and there is nothing to stop it spreading? According to the trial I am on most surgeons will recommend ANC. I know some of you had a sentinel lymph node biopsy, the blue dye and tracer, and a relatively new technique to identify which glands have absorbed the dye and duly removed. What isn't known is if all the cancer has gone after chemo. Hence since I was having ANC and have had chemo I had the trace dye put in to see if it correctly identified any suspicious stuff. Hope this makes sense as I don't want to type out two whole paragraphs.
I'm waiting for hubby to come home from work to take me for my PICC care. Hope he remembers otherwise I can see me driving against medical advice. I've got full movement in my arm so hopefully I'd be ok.
Have a good day everyone xxxxxx
I have a Coventry Blaze cowbell (sorry Seaside!!) And fingernails in dire need of a re-paint
I’ve got a Korean temple bell in my hallway Rosina. I’m going to give it a ring for you when you finish. Xxx
Thanks SusieB, thanks everyone. I have decided to go looking smart as if I was going to my work. Will post a photo when done with the nurses. Hopefully they have something to make some noise with 🤪
I also just got a call from H1 he is able to leave work and take me to hospital for my last dose.
Didn’t used to want him around at the beginning of this. Now I am grateful 🙏
Hope all goes well for your final chemo session. You won't be alone, you've got a whole crowd of us routing for you☺. ❤❤❤❤❤
Thanks Implausible, I didn’t go to sleep until 12 midnight last night ( the roids again). Final chemo today pleased but emotional (music helps) no buddy either ( so all alone, got used to having someone, it’s become a habit!!!) . Oh well I will have warrior guy with me ( this is his 2nd appearance- love him) and all of you ladies in my mind 💕
Sorry Edinbird, the message was supposed to be 'hope you get a decent night's sleep tonight'. Susie
C-TRAK, that's the trial I was reading about. Sounds interesting. Hope you get you decent sleep tonight Susie xx