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
Hello all well Ive been T'd. Got home about 3 and took dogs straight out. Took more steroids. Think I'll leave off the anti sick meds just took one before the infusion. Feel fine so far much better than FEC. This time I have got my first ever WBC injections to do on day 3,4 and 5. She said the T really wipes out the immune system. I also been asked to go on the aspirin trial which I am quite keen on. Apparently it may help with recurrence and as long as my body can take it I think I will give it a go. Also means I checked on more frequently over 5 years so I am keen on that too! The cold cap was really uncomfortable today found it much colder but maybe thats because my hair is thinner. Sorry to hear that some of you are still unwell. Hope you get out today Implausible and glad that you have had a reprieve Nettie. Hope you feel better Seaside, Sonia and Trixie. Have to go wash my straw like hair now.
I think we have solved the mystery of the weird blood results, although I still need to convince the docs here!!
So..... turns out it wasn't my CRP protein yesterday that was too high. Junior doc got that wrong. It was my white blood cell count.
And it is still "too high" today so they are still saying no go home.
But what do we have to do after chemo?? Jab ourselves in the tummy with something specifically to boost our white blood cell count!
Pointed that out and doc is all "filstagram wouldn't still be working if you did the injection on Wednesday" but of course I am on Lonquex not filstagram which is the longer lasting pricey private one that you only jab once.
Doc has gone off all confused. I have rung my chemo team who have confirmed that with lonquex it is perfectly normal and expected for my WBCs to be elevated a week after chemo.... that just means it is doing its job!!!
So basically all this fuss has been for nothing.
Now I am waiting for the doc to come back and I hope I can persuade her!!!
It is all well and good going private but when they use methods and meds that the NHS doesn't use, it doesn't half cause problems!!
If anyone needs to escape from the world of bc and feeling crap,
I thoroughly recommend this podcast:
Implausible pleased your feeling better and hopefully you'll be better on the antibiotics
Nettienoo so pleased they didn't admit you again fingers crossed with plenty of rest and antibiotics you'll improve quickly xx
Seaside sar hope you feel better soon xx
Sonia28 hope you feel better soon xx
I'm suffering from heartburn again although I'm already taking medication for it, not dressed today trying to do a jigsaw a lovely picturesque view from Bayeux France
Thinking about you all on here even if i haven't mentioned you just getting lazy again xx
I hope you will be following soon Sarah. Only been here 5 hrs so far and already had enough. If you feel like you need a poo try and make it a furtive one eh? Xx
They are letting me go home with oral antibiotics. 💃🏼💃🏼💃🏼💃🏼💃🏼💃🏼💃🏼 😀😀😀 x
There is a God!! Or something!!!
I am so happy for you Nettie! I was holding my breath
Marlyn , fab news about the LGFB session. I am usually not at all into "pampery" type stuff but I must admit I really enjoyed mine. Plus, all those freebies!!!
And Susie, I might enquire about an upgrade to an M4 view room mine looks out over the courtyard, which should be nice, but it is just full of hack-coughing smokers!
I'm now awaiting a verdict from a blood test they managed to take at around 1pm
Wish me luck. If they still say no, start working on those sandwich boards