Sept 2025 chemo starters

[dizzy3]

I’m now 4 weeks post surgery.

For the last 2 weeks I’ve had a very sore, swollen boob. An initial week of antibiotics seemed to be helping but then it came back with a vengeance this weekend and the 2nd lot of antibiotics wasn’t helping!

Yesterday I had an ultrasound and they identified some pockets of fluid. They drained 20ml of fluid and have sent it to be tested but it wasn’t as bad as they said it could have been (no pus) so I’ll take that as a positive!

I then asked to see the breast care nurses as still not happy with the pain etc.

They were lovely and agreed I probably needed a different antibiotic so I waiting for a bit longer and eventually saw the surgeon. She prescribed different antibiotics.

I was due to see her today for my results. She’s said not necessary she’d give me the info while I was there. While I was laid on the bed with paper across my boobs!

The good bit:

The breast cancer is all in the bin - her words!

The not so good bit:

There was a 1mm micrometastatic deposit (small clusters of cancer cells) found in 1 of the 8 removed lymph nodes.

It may have been an isolated incident but best to be safe so I’m going with the Oncologist’s recommendation of further node clearance. My surgeon will avoid a full clearance if possible but will clear what’s required.

When she removes the additional lymph nodes she’ll also do a washout of the breast cavity to aid recovery from the infection.

Surgery date is 17/3/26

[bellbert]

Hello @molly.m , don’t our nails look similar! I catch mine all the time too, always expecting them to have popped off, not yet though! Hope you are having a brilliant day - don’t go getting a speeding ticket, on your buggy Jane xxx
Hello @emsd2025 , everything is terrifying now, I thought they just wanted to see me about my eye and the funny light flashes, turns out they were checking to see if it had gone to my brain!! Luckily they think it is just the Zolendronic acid, so I am not having a brain MRI at the moment. The thought hadn’t occured to me, so the shock made me burst into tears, when I got back to the car - frightened the life out of my husband! I hope you don’t have to wait too much longer for your results, we are bags of nerves as it is! Jane xxx
Hello @dizzy3 , we all have little breaks from the forum at times and then struggle to quickly catch up, so don’t worry. I did enjoy my birthday, my parents were here, we played some games ( sitting down) and I had alcohol free Prossecco ( still on antibiotics) and black forest gateaux. What more can a girl ask for? I hope your birthday next year is fabulous, to make up for this years. Sorry to hear about the lymph node, but fantastic on the main cancer. Usually a 1mm micrometastic is classed as node negative, so I wouldn’t have thought your prognosis would change at all - it is great to hear that they are still going to look at more nodes though, just to be sure and to keep you safe. I hope the antibiotics help with your pain, the flush should help a lot too. Best of luck on the 17th. Jane xxx
M

[emsd2025]

Oh Jane how awful! I’m so sorry to hear that but excellent news they just think it’s the zoledronic acid! Finally managed to get through to the breast secretary and some appts in the diary. Also my medical oncologist seems to have ok’d standalone Pembro - no idea when we’ll start but it feels like some progress. Totally bags of nerves it’s awful but we’ll hopefully get there

[emsd2025]

@dizzy3 so good to hear that the cancer’s in the bin apart from the pesky micrometty node. Wishing you all the best for the 17th!

[bellbert]

Thank you I came home and googled symptoms, seems the ones I had given them, were exactly the same as for brain metatisis ! Fingers crossed it’s just the Zolendronic acid… Great that you have finally got some dates and that you are getting Pembro, it’s a shame that you have had to stress about it first though - they really do seem to forget how much we have been through and that we are fighting for our lives, literally! Good to have got the win Jane xxx

[emsd2025]

Totally @bellbert im sure it is - how long have you had the symptoms? Yep it really is shockingly poor form - they’re lovely people but I think until you’re in our position it’s impossible to comprehend. I was in tears at pre-school drop off today when the manager asked how I was - I really need to put a sock in it, fingers crossed the fear will recede soon

[poptart]

Hello September ladies - I’ve just popped across from October.

Did anyone here have 9 weekly Paclitaxel (instead of 12)?

I was originally due to have 4x Paclitaxel every two weeks but I requested weekly instead. Oncologist agreed and said 9 cycles.

I saw the BC nurse today who said I will be having 12 not 9 - as 12 is “standard”. She couldn’t answer why I was originally told 9. I’m waiting to see my oncologist next week to get some answers.

I thought I only had 2 more weeks to go and now it looks like I might have 5 weeks. I know it’s not the end of the world but I had mentally psyched myself up to being nearly finished.

Did any of you ladies have 9 Paclitaxel and do you know why 9 not 12? Were you given any reason?

Thanks in advance

[bellbert]

I have only had the symptoms since the treatment last week, the first Zolendronic acid infusion with the Phesgo leg injection. Both of these have quite strong side effects and eyes can be affected. I am going to try and get an appointment with my optician, it will put my mind at rest a bit. I really felt so sorry for you at your pre-school, you end up feeling embarrased as well as terrified - I am sure the manager understood, but it is something else you then have to cope with. I cried when I saw my neighbour when I got back home, unfortunately our emotions are so raw, it really doesn’t take much. Sending you a big hug, tomorrow is another day for both of us Jane xxx

[molly.m]

Thanks, I did. And with a little shelter over it aswell incase it rains. I can’t put my upper body in it but Erin’s loving it glad you have some dates down. Big hugs sent your way xxxxx

[molly.m]

Fabulous news that the cancer has been thrown out. And sorry it was found in one of the lymph nodes. Your surgeon sounds like shes on it tho and I hope it all goes well on the 17th. I do that too, get a little overwhelmed when there’s lots to catch up on. I usually find I start writing replies and leave them building for a few days before tackling them all properly. Hope your not in too much pain with your boob. Big hugs sent your way Xxxxx

[molly.m]

Oh gosh, I’m so sorry you had that scare today. I hope your ok. Are they just going to follow the symptoms for now then? , fab that they think its the infusion tho and dont think you need the MRI. I was surprised at the side effects of phesgo. Its so much just like chemo ones isn’t it. I wondered my my tingly fingers felt like they were getting worse and my hips and right arm being in pain and achey as the day goes on so had a look on the mcmillan page. Neuropathy is still a side effect of this big hugs xxxxx

[emsd2025]

This sounds incredible @molly.m hope you can get in and keep your top bit out! The sun is shining today and things always feel better. I’m damned if cancer is going to take away my happiness as well as my tit!

[story1]

Morning everyone, it’s a beautiful day here in Hertfordshire, sun is shining and I’m wondering what to bloody wear because it’s hot! I’m pretty jittery now, I hoped to have my latest book finished before surgery but I can’t concentrate. Don’t know why I’m so nervous about surgery Saturday, I suppose it’s just the unknown isn’t it? Had meeting with nurse to talk me through everything yesterday and she was super lovely. ECG bloods etc. another weigh-in holy shit, moving swiftly on. Anyway trying to keep busy. These post chemo body sensations are weird, I’ve got tingling in my lower back and I guess I’ve been doing a lot more this week so things “waking up” that have been resting for 6 months…

@bellbert oh jane what a shock! I never used to cry really but I blub all the time now. Such a relief though that they think it’s zelonronic acid (had to look it up) good idea going to optician they can see so much at the back of the eye. Sometimes I think it’s good to go outside of oncology our hunches shouldn’t be shrugged off. Your nails look so much better and dry? Good sign. When is your break away? Before or after radio? I bet you can’t wait. What’s the food like? I’ve been quite careful and still gluten free, I tried gluten on Sunday and felt so rough so I’m staying away from it. @molly.m your trip away sounds wonderful and no wonder your daughter is loving it! Time with mummy and a hot tub!! Love Chester zoo. Your nails look better too, I can’t imagine how painful it must be banging them every five minutes. Hope you had a rest day it’s so tempting to keep going forgetting we can’t do as much as we want. I’m so impatient ffs. How is clay work coming on? That’s so weird about feeling cold drinks under arm! Next you’ll be able to tell us if it’s coke or Pepsi just from your arm pit

@emsd2025 gosh I’m not surprised you’re anxious, did you manage to get an appt with onco? They’re good at administering the treatment but we do seem to get forgotten as people behind the trajectory of drugs and statistics. After treatment stops it is a very lonely place and I find even my husband doesn’t really get it. He sees the fear and the pain etc but not the deep set frustration with how we can never seem to get satisfactory answers quickly. The waiting is the worst bit​

@cathie2 fantastic to get it over with but I know what you mean about it still poisoning us. It’s a weird feeling and nearly 4 weeks out I still feel “damaged” and I know it’ll last a lot longer too. Hope you don’t get the shakes/wobbles like last time and you have plenty of time to recover xxx

@dizzy3 fantastic news about tumour!!! Bugger about the pesky node but going back in to check the others is the best thing isn’t it, obviously you’d have preferred not to have to but they’re taking good care of you. The fluid sounds so distressing and painful but hopefully it’s an easy job in 17th to clear it all, hope you manage to distract yourself a little before that, I imagine that’s all that’s on your mind though, it’s one thing after another, sending hugs your way xxx I think this is why I’m nervous tbh it’s not Saturday, it’s what comes after​ on your tummy, I’ve been gluten free since about a month into chemo and it really helped xxx

Thinking of everyone, Rachel xxx

[story1]

absobloodylutely

[bellbert]

Morning Rachel @story1 , beautiful and sunny in Suffolk today, bet Southwold is heaving. I have the irritation ( good word for it) in the base of my spine, sometimes turns to niggling pain - find i’m gritting my teeth! Yesterday was the first time I had gotten really scared, ever since this started, last April. I have just wanted to hurry up and get through treatment ( as much as they would offer me, I asked for everything!) and then come out the other side. Yesterday I suddenly realised I was staring secondary cancer in the face, which hopefully it’s not, but when I realised where the conversation was going, it terrified me. I see the optician tomorrow, as you say, they can see into your head, so if I get the all clear there, then I will relax. We are going to the Gunton and staying the night, after radiotherapy, so probably end of April. The room I want again, outside the main building, had a rough lawn area, right outside the door, so great for the dogs. Food is great, fairly simple, they like their steaks! My favourite starter is a vegetarian one, mixed beetroots with blue cheese and dressing and stuff ( can’t remember the ‘stuff’ :). I can’t believe you have been writing your current book, all through this, that is amazing in itself, so I wouldn’t worry about not finishing before Saturday - I don’t expect the surgery will have too much effect on you, so you will be able to finish it soon after anyway. Your daughter comes home today doesn’t she? I’d just enjoy the sunshine with her:) I had never had an operation before all this and was scared witless, but there really isn’t anything to be scared of. As soon as you get in your cubicle, with a bed and chair - you will be seeing nurses, for obs, the surgeon, to run through everything, the anaesthetist to do the same, so you don’t have time to think. I walked into theatre, sat on the edge of the bed, while they put the canula in, the anaesthetist was talking to me, while they did that, then hop on the bed, have the injection to put you to sleep and when you wake up, it’s all over! Just a short time to make sure you are over the anaesthetic and home you go. I didn’t even have to take painkillers after my op, so hope you are the same. The hardest thing will be remebering not to do too much, as you will probably feel so well! Good luck, enjoy your babies this week and the sun!! Jane xxx
Hello Ailsa @molly.m , I am feeling a bit less terrified today, but until I see the optician tomorrow, I suppose I still keep thinking about it. The hospital just want me to contact them if symptoms get worse or others start. As you say, Phesgo is bad enough on its own and my legs, arms and back aches and my feet have tingling they didn’t before. Still have a wave of nausea earlier, but Zolendronic acid can do that… Hope you have great weather and have a super day and loads of fun!! Jane xxx

[molly.m]

Having a lovely time away, having some good family time. I Went in the hot tub last night @emsd2025 although only waist deep with a dressing gown on my arms to keep the top half warm aha. No, you take that happiness and keep it close. Hope you’ve had a lovely day in the sun it does make things better seeing the sun shining rather than all the rain we have been getting.

Watching TV before and the screen went black, looked and thought oh look voldemort…..it was my reflection I still dont recognise myself when I see a random reflection, its like I’m not ready for it. Scooter was brill yesterday tho. Saved my legs… but I hit my partners legs aha. By accident of course, we were going through a dark tunnel with black ropes hanging down, with a dark area beyond with no lights and double doors. I didnt want to hit Erin….

Here’s a photo aha

@story1 I felt the same before mine, never had surgery so it was all the unknown. But Jane has it right, by the time your in the room and there’s everything going on around you, you just go with the flow. I had 9 other ladies around me and we chatted a little before hand. The anesthetic team were amazing. I had a lady just chat to me about Erin and such and honestly dont even remember anything after they said they were putting the anesthetic in and ill start to feel it. And healing for myself apart from the randomness with my underarm sensation (telling the difference between drinks would be an amazing party trick ) has been ok. Only had painkillers a couple of times and that was more because of my underarm rather than the actual areas operated on. Brilliant that you have been able to keep on writing through all of this. I’m feeling the pain of overdoing it today. My hands hurt this morning from using the scooter yesterday and my hips and knees are rather sore. As I walked around today I had elderly people with canes and zimmers walking past me aha I’m like a snail. Clay sculptures have turned into clay, string, wire and sewing but I’m loving it. I did myself as a Coraline doll and now I’m working on Erin. Really proud because I’ve never made any form of clothes before

@bellbert I’m glad your feeling a little better. I hope all you come away with tomorrow is reassurance and a new pair of glasses. Oh gosh hope its just tingles and that they go away. Not sure if phesgo is the same as chemo on the cumulative side. Phesgo has nausea linked to it aswell. Hope thats not too bad for you. Sounds like a lovely place for you getaway, it will soon be here and you’ll have the best relaxing time

Nails are doing fine. Mostly now its just that I cant use them properly because of the looseness

xxxx

[emsd2025]

Best of luck tomorrow Jane! I bet it’s lovely having your girl home Rachel!

[bellbert]

It’s so lovely to see you out and about, with a smile. that buggy is great for carrying everything, by the looks of it! I always forget I don’t have hair, or eyebrows, as I hardly ever look in the mirror no need, no hair to comb and I don’t wear make up. Those clay sculptures are amazing! How you are managing to do them as well as that with all your nail problems, I have no idea. I am looking forward to the optician tomorrow and hopefully feeling a bit calmer afterwards ( could go either way I expect). Remembered earlier, I had vertigo and the room spinning a couple of weeks ago, for a couple of days, sent me into a panic again! Have a brilliant day tomorrow, hope you get to use the hot tub again. Wonderful memories Jane xxx

[bellbert]

Thank you, fingers crossed!! xxx

[story1]

Ah Jane everything crossed for you​ the fear is so real, I felt the same with the lump in my back, convinced it was bone mets. Nothing anyone can say will stop you worrying but I’m sure you will be absolutely fine xxx thank you for the reassurance re surgery, absolutely that, as soon as the anaesthetist says here’s a nice g&t coming, I’ll be out of it then waking up in recovery. Writing has kept me distracted. I finished one before Christmas for a different publisher, it’s a standalone set in a Scottish castle. This one is Kelly 14 and j got such a lovely message from my editor today telling me everything can go at my pace and not to worry xx she’s wonderful I’ve worked with her since 2018.

Ailsa I absolutely love that photo of you on buggy! And those figures! Amazing. That is so you! I bet Erin absolutely loves them.

Mike has gone to get Tilly from Stevenage station. Hospital also said they can both come with me​ nuclear injection in my boob tomorrow then we’re in business.

Will be thinking of you tomorrow Jane xxx