Proper catch up time
First of all, huge congrats to Daisy and Ocean for ticking another one off the list. Woohoo!!!
Enjoy those first few T days which are definitely nicer than the early FEC days, and I hope that when it does kick in for you later on it is mild and forgiving x
Ocean as ever your photos are spectacular. Some of those wouldn't look out of place in an exhibition, really!
Rosina your description of the crowded yoga yurt with everyone limbs a-tangled and stuff catching fire in the corner, really did make me laugh! I actually think the delay in your treatment worked in your favour, as day 3 post T is more manageable than day 10, from what I have read. I think you might have struggled! Although that said I couldn't do it at day 3 either 😄
Marlyn I am keeping low but not moving very fast today 🙂
Oooh Susie I didn't realise your holiday was so soon! Brilliant!
I have sadly decided not to go ahead with my long weekend in Edinburgh in a week and a bit. That is my "good weekend" and I am sure by then I will be feeling ticketyboo. But so soon after my little hospital trauma (my other half laughed yesterday when we got home and I called it that, as he is used to me not being phased by anything, but it really WAS traumatic!), I don't think I would feel comfortable too far from home. Pity though as I was looking forward to a coffee with our lovely Edinbird!
Nettie how are you feeling today? Are those glands behaving?
That train ticket smile fooled me for a second 😄
And today I have made it up to 3 on your scale 🙂
And Seaside? Hope you are still on the mend and enjoying your boxsets 🙂 I am finally watching Umbrella Academy and enjoying it a lot more than I expected to. I read the comic when it came out about 10 years ago and wasn't particularly impressed. The TV adaption seems to have mainly taken the better bits. So that's good.
For all of you worrying about a gen anaesthetic for the first time, that is totally normal. I was "lucky" that I had had a hysterectomy 2 years ago, so it wasn't my first rodeo. I actually quite enjoy a GA now as that night you have the deepest loveliest sleep!! 🙂 but before my first one I was TERRIFIED. I even wrote the kids letters to open in case I didn't wake up!!! Luckily they didn't know about them or they would have been worried. I was a twit. It was a breeze.
Injection wise, my nurse tells me to do mine at midday, but I am not sure why. If you haven't been told a specific time I guess you do what suits you?
Oh Sonia you are in the wars 😞 hopefully patched up and home from hospital now and feeling a little better?
Rosina...what would I do with the closed footpath? Today, call an uber:D
Big love to everyone
I have to have my injections after 1pm as that’s when my treatment finished, but anytime after that, just the same time each time. I do mine about 8:30pm.
Im to home now, blood levels were raised so weren’t sure to begin with, but happy to let me go home, and await swab results from PICC line.
I always had my fillywotsit injection at around 5:00 pm. Mainly because my hubby would definitely be home by then to do the deed. It helps if you take the syringe out of the fridge half an hour before injecting. Thanks for the information regarding surgery. My fear like yours is having the anaesthetic. I'm terrified😨😭.
This sign was up on my return from Lidle ( had to go for a bag of spinach).
It hadn’t been there on my walk in , I had used the foot path 1/2 hour ago.
Initially I was shocked ( who has done this to me ??? why ???) then I was amused 🤪 adventure !
Do I go left or do I go right? How do I get home?
Left means less walking but more traffic and not scenic.
Right means practically walking into town but much prettier and less traffic.
Could I ignore the sign and just clamber over ?
What would you do ?
I do my injections in the morning.
Just after breakfast.
Nobody indicated a specific time.
I am a morning person so I just get as much done am , so that I can forget about it afterwards.
all will be well tomorrow.
With my lumpectomy they also did a sentinel node biopsy.
The sentinel nodes are the ‘guardian nodes’ in the breast and the gateway into the rest of the lymph system.
My lump was 43 mm ( and they got good clearance) one sentinel node was positive .
I was a day patient for this op. In the early morning and out by the afternoon . No worries, no pain, lady anaesthetist ( who I liked - she asked me what my favourite tipple was on a Friday evening: red wine , last thing I remember, then I was back on the ward annoyed that people were talking over my head and I just wanted to keep sleeping 🤪 it was the nurses making sure I got fed and watered 🤗)
As one sentinel node was positive I was advised to have right axillary node clearance- which I did .
10 nodes were removed and 1 was found positive.
I again came home the same day with a drain in which came out 3 days later.
I slept in a sports bra from the time I left the hospital on this second op. Till when the drain came out . It was a front zipping sports bra from M&S , I then switched to a M&S soft bra ( no clippers, poppers, zips) more like a crop top but for adult women .
I did the arm exercises I was sent home with RELIGIOUSLY x3 a day .
Starting with the shoulder shrugs even when the drain was in.
They kept on re. Me stocking up on painkillers but I only took ibuprofen at bedtime. It was more discomfort than serious pain ( then again I compare everything to having had staples in my lower abdomen after a c section- and nothing has ever been as bad as that 🤪).
Also walk as soon as you are able, don’t stay lying in bed. You want everything to circulate.
Re. Strong painkillers the only time I took cocodemol ( codeine) I passed out in my bathroom- fortunately I could tell I was feeling funny and called out to H1. I will not take them.
Did I ask questions?
The one that I have written before me says :
’what is my prognosis?’
I wanted them to tell me and we went through PREDICT together with my surgeon.
Funny the different information we get,
MJB, I was told to have front fastening bras, I got the M&S ones. I did have mastectomy a reconstruction so not sure if you needed it to keep every thing in place, also had to wear 24hrs. But when I had mastectomy I was told anything without an underwire. When I went to get my prosthetic the other week she told me Asda do good post surgery bras ect on line. I also ended up investing in a expander to make my bras breathable, not sure if it was swelling or weight gain as I’ve definitely had both. I did invest in some bralettes, for after a feed weeks after surgery when I felt I couldn’t breath in the bra at night. They were just difficult to get in and out on my own
I am rubbish at asking questions of the docs, so I probably didn't ask much!
But in terms of my surgery, I had a lumpectomy and a couple of sentinel nodes taken out at the same time for testing
I was in for 2 nights, I think? Gosh I can barely remember. I think that was because I was late into theatre (7pm ish). If I had been in earlier I would have been home the next day.
I had a general anaesthetic which went super smoothly, and I felt fine after coming round, no nausea, and the pain there was was quickly sorted with one dose of oramorph. Once that wore off I was onto just paracetamol and ibuprofen. They offered me codeine but I didn't need it and it always gives me bad constipation so I declined.
My post surgery right boob is quite lovely:) pert and firm and in considerably better shape than it was before. My surgeon did a great job! There are scars but that's life.... and she was able to save the nipple although it is a bit flat now.
They ended up taking out 2 lymph nodes, one of which came back positive. Which was disappointing as they had all looked healthy on the scans. I have opted not to go back for a full clearance though as my surgeon and onco have showed me stats that basically say that chemo and radio should zap what is left, and the recurrence risk is not improved in my particular case by also clearing the rest of the nodes out, so why bother....
(I will always worry about that decision coming back to bite me!!)
Hmmm..... what else to tell you. Recovery was pretty smooth. I was fully recovered in about 3 weeks. Just in time to start chemo.
Oh and bras.... I was given 2 front fastening post surgery bras and I had to wear them all the time, day and night. They are super comfy, I am still wearing them (although not overnight any more). I haven't worn any of my old bras since surgery. My boobs are so lopsided still that I don't think I could find a "normal" bra to fit.
Once I have been "evened up" in August and am all healed, I shall go bra shopping 🙂
Just to let you know I was advised by my BC nurse not to get a front fastening sports bra as you can't adjust them. In fact she reiterated this on Monday in the moving forward course and apparently the worse ones are the zip type. I bought two high impact ones from Marks I was measured but my God were they too tight after surgery. Not the first few days but by about day four I was in real discomfort. So my friend bought me a larger under bust size from 34 D I went to a 36 B as I just could not stand the tightness. In fact these were still tight so I ended up cutting two old bra fasteners off and sewing them on the new ones to give me an extra inch. I did have a mastectomy with reconstruction mind you. So if you are having a lumpectomy you will probably not get the same issues as I had anyway. Of course as we know advice is different everywhere and front fastening might be the preferred style in your unit. But just to prepare you they will be tight and you have to wear it 24hours a day.
Just a quick update, went to get PICC flushed today, they didn’t like the look of me or my PICC line site, so have swabbed cultures and taken bloods. She said the hydrocortisone wouldn’t work as the rash is a reaction from the chemo so have given me antihistamine. Presently taken myself off to get my drugs and. Lunch as not allowed to leave hospital until results are in which could take up to 2hours. ( I just want my bed, feeling very sorry for myself so little sleep last few nights not helping the )
First thing this morning I was thinking yay - last chemo is next month! Now I’m reading all the surgery stories and feeling I have so far to go... wish I knew for sure what surgery I need, I know what the surgeon wants but that depends on the effectiveness of the chemo. Still 6 weeks til I’ll know.
I know it’s in two lymph nodes but I don’t really understand what will happen in terms of removal, I guess I want as little as possible but I just don’t know and I haven’t asked as it’s not relevant yet. The not knowing is the worst bit 😕
Need to get dressed as I’m still sat in my pjs and people are due! My throat is hurting more, need to keep an eye on it but it’s kinda achy gland hard to swallow discomfort rather than anything else so hoping it’s just more aches coming on
Re the injections I do mine in the evening so if it’s sore I can just go to bed but so long as you are consistent I don’t know that it matters?
Good morning Implausible
Oh it's so nice to read you are feeling ok. I love your assistant she looks very interested in her work 😀.
Keep well, rest and play a bit. Hope your appetite is ok.
Hi all, just a quick update about me, me, me 🙂
Will come back later and check in with you all properly but just confirming I am ok, slept like a log last night (8.5 hours!!! Without even getting up for a wee!!! Unheard of!), and am feeling reasonable today. Weak and a little achey but nothing major.
Took me a couple of hours after getting up to brave taking my temp but delighted to check in at a reasonable 37.0
Am back at work, but in case you worry about me exerting myself, work so far has consisted of one phone call and a few emails fielded on my phone while laying on the sofa under a blanket.
My assistant is helping:
Just quick question I have to start the injections tomorrow. Only one a day for 3 days. When is best time to do. It is Filgistram or something?
yes forgot about the bras sports bras and front fastening things for ease of examinations. Try to do exercises before you have surgery so you know what it feels like. Also bought a big v cushion to sleep with and had a lovely heart shaped cushion for under my arm. I had to stay in overnight on all occasions as I live alone but that is not the norm you will be sent home on same day all being well
Susie, I had a lumpectomy, the surgeon said I was lucky as the lump was on the side, so I only have a small dent....I was a day case, went in 7.20am, up to theatre 11am, drinking coffee and eating toast by 3pm, home having me dinner by 5pm.
stock up on soft bras ( good old marks) and absolutely make sure you do the exercises they give you....xxxx
Morning lovely ladies
Susie good luck for tomorrow, i had a skin sparing mastectomy nipple taken to due to the size of my tumour and the size of my DCIS, I just wanted it out then they found it in a node so a month later done full node clearance and luckily only found the barry in one,, just like daisydi i was terrified of the thought of the anaesthetic but once they were aware they were fantastic, I really can't remember the questions i asked if any, maybe, about showering, exercise the speed, the numbness in arm and boob, the drains driving xxx not sure what your question was now xx
Susie my first surgery was a batwing mammoplasty with sentinel node removal. It was a big op but I was scared of anaesthetic as I had never had one. Make sure they know you are worried the anaesthetist was fab when he knew how nervous I was. Just to warn you none of my nodes looked abnormal on u/s and showed no sign of swelling under my armpit but in the end they removed 24 and 4 were positive. I had to wear a really tight corset as there was a lot of tissue removed and moved around. That was the worst bit. I had a reaction to the waterproof dressing and developed really nasty blisters under it so keep an eye on that. Should have taken it off sooner. It really wasnt that painful just managed with over the counter painkillers. I ended up with 3 surgeries and was very disappointed when I knew they hadnt cleared margins. They removed my original tumour and found an area of DCIS which caused all the other surgeries. My tumour was the same size as yours 21mm, not sure how much DCIS there was. I was adamant I didnt want a mastectomy, an axillary node clearance or a drain. I didnt have mastectomy although they wanted to do it third time but had everything else. I just wasnt ready to have the whole lot off after going through 2 surgeries but then the third one cleared the 1mm margin so I was pleased with my decision. I still have plenty of boob. Just try to expect the unexpected and not be too disappointed if if doesnt work first time. Good luck x
Also just remembered all the questions I needed answers too I couldnt get before surgery. The waiting for results is the worst but once you have grading/staging etc. it is easier to manage
Just had a phone call to say I can have an appointment with my surgeon tomorrow at 9:40. Eeeeekkk! Not much notice. Can I put a shout out to those of you that have had surgery to ask what questions you asked and were there any that with the benefit of hindsight you'd wished you'd asked. I know I'm having a lumpectomy and I know there's some nodal involvement but not how much.Thanking you all in advance. xxxxxx
Rosina I made something very similar to this last night. Yummy! Got some left for tonight too x
Seaside Sar, well done for getting dressed. My husband can always judge my level of wellness by the following....
1. Is her sleep hat over eyes?
2. Has she been out of bed?
3. Has she had a shower?
4. Is she dressed?
5. Does she have makeup on?
I very rarely reach 5 but if I get to 4 I feel I’m winning. 😘
Morning Daisydi, yes I am OK now.
Yoga / core routine completed.
Breakfast of toast with orange marmalade and coffee.
Need to go out to buy some spinach for a spinach and chick pea sauté (another one of my fool proof recipes).
I have just listened to this podcast
Sarah hope you had a good night’s sleep.
Nettinoo and Sonia28 hope you are feeling better.
Trixielady have you finished your puzzle?
Seasidesar are you feeling stronger?
Love to all
Hi Daisydi, my neck and ear still painful but have started on the antibiotics so hopefully (if it is bacterial) they will help. Xxx
How is everyone doing today?
Hope you slept well, Sarah. Must be nice to be back home.
Well done, Daisy, powering through. Glad you're OK. Another one ticked off, woohoo!
Don't work too hard, Edinbird. Make sure you factor in some rest breaks.
Glad you're feeling OK after your first Taxol, Ocean. How many will you have?
Rosina, yoga sounds fun, if a bit sweaty!
Not long until your trip now, Susie. How wonderful! Love the name figlets for the little figs 😀
Nettie, I'm going to start collecting train tickets 😁
Marlyn, Sonia, Trixie, MBJ, Deano, Sandra & V, hope you're all good today.
I'm getting dressed today. That's an improvement on yesterday already. Have been binge watching The Marvelous Mrs Maisel. Really enjoyable and takes my mind of the aches and pains.
Hugs to you all,
Morning xx slept so much! Not sure if it’s good though... the sore chest I experienced on my walk came back during the night with a bit of a sore throat. If I get a sore throat normally it means I’ve been snoring. So that might be good if I was properly out. Anyway I turned over got comfy and slept again until about 4.30, trip to the loo and looked at phone for a bit then back to sleep before 6. Still in bed now feeling very tired. It’s a little uncomfortable to breathe but no need to cough or anything.
Going to get up and start work and at least I’ll have an easier afternoon when my
boss comes. If I’m ok to sit and talk to him that is, and not great that I’m going to have two big windows in the lounge taken out for a period too! If the weather was better today we could sit in the garden but it’s not. Oh well better get up and see if this improves.
Glad you’re feeling ok Daisy the steroids definitely help!
Morning all. I feel absolutely fine. Had a decent sleep one lot of 3 hours and then another 4 hour stint so I am happy. No sickness and no aches and pains yet. Better get lots of jobs done today before things change! Thanks for the info Susie I will take a look later. Have got stuff to read through but my only worry is if I get placebo and then its not doing anything. Hope everyone else ok. Are the Sarahs ok and Edinbird and Sonia how are you? Will take steroids in a min as they make me look healthy. Rosina are you ok now?
Morning girls, for those of us who are worried about what chemo is doing to our teeth.......😂😂😂
Hi again Daisydi, forgot to mention, if you want to find out more about your trial go onto the cancer research UK website, type in Aspirin in cancer type/drug type box and you'll find more info regarding the trial. I used that information alongside the literature I was given by the hospital to gain a better insight of my trial. Hope this helps. Susie xx
Well done for getting through your 1st T☺, I know you were feeling apprehensive about it, along with everyone else, including me, and I'm ages away from starting it😟. The aspirin trial sounds interesting and yes when you go in a trial you do get more frequent checks. That's one of the things that swayed me in the end. Also my trials nurse explained the other day, if a trial doesn't seem to be working it is immediately stopped so no one is put at risk. I've also got a better understanding of why it can take around 10 years before a trial can be declared safe and put out for general use. As for the cold cap I found that got progressively uncomfortable, probably like you, due to thinning/bald patches. Worth perserviering with though. The WBC injections💉💉💉 can be uncomfortable at times, it's a case of trial and error until you get it right . Get plenty of rest. Take care xxxx
More lovely photos from your garden. They certainly brighten up my day🌹🌻🌷🌳☺. I look forward to our own quince and figs looking as impressive as yours. Hubby came up with the name figlets the other day when we discussing the size of the figs developing on our fig tree, they're that small at the moment. I'm really looking forward to our break in Aix. We fly out next Wednesday and return Sunday. Not long but long enough to escape all this bc stuff for a while. xxx
Out on good behaviour.....now, behave yourself, keep your nose clean...keep low move fast....xxxx
I'm home, and suddenly shattered. Shower and bed for me. Catch up with you all tomorrow.
Fab photos Ocean21🤗
I would love to go on a ‘yoga holiday ‘ in the future.
The day event was lovely but 15 women in a yurt was a bit crowded. I think 10 would have been a better number ( who wants to worry about banging into their neighbour when twisting left and right on their mat ?) it also got surprisingly hot in there -as my neighbour joked ‘yoga flow turned into hot yoga - and I was wearing a long sleeved T’ we had to open the yurt door.
The lunchtime was delicious though with a selection of salads , dips , bread and cheese. Also cake 🤗
Plenty of teas/coffee.
Not sure why the yoga instructor decided to light the wood stove in there in the afternoon ( as nobody was cold) she had stacked her yoga blocks along side it and a few of them started to burn. It was good that one of the ladies noticed ( we thought it was an odd smelling candle!) I did feel for her as now she has to replace at least 5 or 6 blocks.
I have done yoga outside and I think that is much better, weather permitting. The yurt was great for all the other stuff we did .
Re. Toothpaste and mouthwash we use here at home and so far no lurgies for me.
Yes, to brushing teeth and gums vigorously ( especially when gums are bleeding). Baking soda gets our vote too, as does floss and inter dental stick things.
Yes, I agree we have great sitcom material 🤪
Well you could not write fiction like this could you. White cells too high now well I never. Hope you get home soon.
Nettienoo so pleased you are going home, but better to be safe than sorry.
Everyone else who is feeling poorly today I hope tomorrow will be better for you.
Good luck with your jigsaw Trixie I started one back in December but only got as far as the edges, it's under my bed now.
Hope everyone has a better day tomorrow.
Hello beautiful ones,
Trust us to have our first ‘political ‘ prisoner in exotic Swindon:)
Then we’ve had the poo debacles and farting stretches and corpses and post yoga body armour. Grey skin and make up trowels We should get together and write a honest but tongue in cheek leaflet on chemo side effects 🙂 I think it’d be quite fun 🙃.Yes side effects are serious but sometimes you have to see the absurd side and have a giggle. I know I do. Thanks for the laughs reading through your posts
MBJ , the choir sounds great fun and a really lovely sisterhood.I think Seaside Sar joined one. I can’t sing a note well done both. Courtesy of the guy in the link ,I was listening to gospel singers yesterday evening, trying to relax before sleeping. You might like his Golden Girls skit. Wait until you see what he does at the end😉
Sarah, so glad that you’re on the mend. Well done pointing out the reason for your raised WBC and you meds. Just shows you how poorly integrated cancer care is in general medicine .
Your embroidery art is lovely. Love the one of ?Icarus guy flying close to the sun. How talented you are.
Rosina, the yoga retreat sounds great. I’ve often looked at them and thought how great they’d be to experience. Always wanted to do a meditation retreat too.
SusieB , glad you’re gremlins shrinking. Aix isn’t far away now. How exciting:)
Sorry for not remembering who had the mouth problems. Hope the antibiotics are helping. Be careful of refined sugars and sugar additives. Mouthwashes haves a bucket load of sweetners in them so , yes they taste nice but there is a price. Sodium bicarbonate is what they prescribe over here and that works. I have some powdered vit c that I also take if my mouths bad. Doesn’t taste great but a swoosh around with that after cleaning my teeth really helps. I stopped using toothpaste ( loads of sweetners in them) a while ago , I use interdents and brush my teeth really really well. I used to have bleeding gums then I noticed that when we ran out of toothpaste and we were tardy getting some more,I didn’t have so much bleeding. So stopped using it and now rarely have any bleeding. Rosina,your hubby will probably be horrified but it works for me!
Everyone going through the Taxol valley, hopefully you’re out the other end.Had my first session today. No aches yet but had a good sleep this afternoon. Need to go and eat . That’s certainly different from EC ,couldn’t face even the thought of food... and th3 smell of cooked food or food being cooked , horrendous. Fingers crossed I won’t fare too badly acheswise. I saw an intern today and mentioned the aches and pains you’ve all been experiencing and she said that tends to happen more with women on immunotherapy along side the Taxol. No idea. Haven’t looked it up yet but we’re all on such different treatment plans who knows who’ll experience what !!
Take good care all.
Well done Daisy!
Well done for dodging admissions Nettie! And hope you and everyone else who is under the weather feels much better soon.
I had a walk to the Post Office and garage to book my MOT, still felt like my legs won’t work properly like my muscles have atrophied but clearly they haven’t. Tight chest too. It is low immunity week so I shouldn’t push myself too much I guess, it’s only Tuesday.
I have a fun day tomorrow of windows being mended and my boss coming round, hoping they don’t both happen at once but probably...
Well done Daisydi, I’m sure you must be feeling relieved it’s over as I know you were worried about the 1st T.
Implausible....for Barry’s sake.......I really hope they get a grip soon and actually listen to what you are telling them. Please don’t let this put you off getting checked out in the future though love. If you feel unwell and have a temp you must always go and get looked at. Xxx