Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

Argh bloody surgery result meeting for tomorrow has been cancelled. I’ve got to wait another week!

@Littlecaf .. how frustrating. I have to say my trust/hospital is a 4 week wait for post surgery results as standard so anything faster than that I think is a win. They booked my results appointment at the same time as the surgery 4 weeks apart. Hoping they don't mess you about anymore beyond this.

@frostyfingers Just wanted to send thoughts your way. I cannot imagine what the two of you both having chemo would be like. You are having an awful time and shouldering so much. I hope you get chance for some rest for yourself somehow x

@somewhereonthe517 thanks - it’s been booked since the surgery (19th Dec) so I think it’s just Christmas that’s got in the way. The results will let me know further about immunotherapy but shouldn’t delay further treatment as I’ve had my chemo and just healing before radiotherapy which can’t happen until 12 weeks post surgery anyway. (March).

My heart goes out to you @frostyfingers such an awful situation

It's my penultimate chemo today, and my lovely friend is coming with me. I've been really up and down over the last couple of weeks, dreading the operation, and recovery, then of course my oncologist dropping the bombshell that I might have to have more chemo post-surgery. I'm a planner and an organiser, so uncertainty makes me incredibly stressed. I've still not spoken to the breast cancer nurses about it, but might get a chance today. So I'm just fretting about it alone, which isn't healthy.

In other news, my eyelashes are thinning, but the hair on my head is growing back ...

What a week, we ended up in hospital with DH who was absolutely doubled up in pain. He has gastritis and a new drug regimen seems to be helping as he's eating better and feeling better - his 2nd chemo is due next Wednesday.

Annoyingly mine has been postponed as my blood test showed low neutrophils. I feel fine but have been given strict instructions to stay away from people and monitor my temperature. I was all organised and psyched up for it but there we go. @BatshitCrazyWoman I'm the same re planning and the uncertainty is the worst, so although it's only (hopefully) a week delay it's thrown me a bit. That's great that your hair is coming back, my scalp is a bit itchy although as yet I have no hair loss, I do have my wig now so am prepared for when it does come out.

@BatshitCrazyWoman all the best today. I truly hope next week’s is your last and totally understand how you need an end point. As a planner myself, I also appreciate how hard your situation is.

@frostyfingers pleased that dh is improved. What a difficult set of challenges you’ve been handed. I hope there is someone to help out with the “peopley” side of things for you. It’s bloomin hard to be the carer when you need to isolate yourself. I hope neutrophils pick up and you can go ahead next week.

I’m realising how run down I was whilst having this week’s break. I hope there are no more delays but need to be realistic that other things may happen to hold up these last four cycles. Very grateful to have the support of others going through similar things.

That's me done, then.
Apart from having to return to the hospital today, rather than my friend trying to explain that no, I wasn't given a "pack", nor any instructions, nor exercises, and thay I haven't even had anyone check the wound, let alone give me a leaflet or anything.

I'm quite amazed how quickly it suddenly became almost my fault.
We didn't have you down as an overnight stay - when did they change it and why?
I wouldn't know, because as explained, the ward I was on had no idea I'd had a mastectomy as nobody spoke to me!

We would have phoned you yesterday as that's when we were expecting you to come out.

No, because you were closed all day for training - that's what was written on the door when the ward sent someone over just before I came home, because they didn't know a thing about my surgery.

Anyway, water under the bridge, and I don't want to start off on the wrong footing with them.

I'm done, and apart from sloshy sounds when I walk, I'm fine and not in too much pain. 🙂

Well done you, @CatonMat Sounds like a rotten mix up in follow-up for your op. Is the sloshing from a drain bag?

I hope you can get comfy and have some decent rest.

33 year old previous melanoma diagnosis (stage 3) had immunotherapy and axilla clearance in left armpit.

Mum had breast cancer at 38. She died in October from metastatic breast cancer that came back 22 years after her primary. Her grandmother died of breast cancer and 2 of her aunties (grandmother's children) died of breast cancer before 50. Her cousin on her dad's side died of breast cancer at 40.

I've been referred to genetics for checking breast cancer gene. I've been waiting for the results for months.

Around Christmas time I could feel 'something' in my left breast, actually it was a freak accident that alerted me to it, I have nerve pain from the melanoma surgery in my left armpit and I jarred my arm and it hurt so much so I grabbed my armpit and my hand felt something in my boob.

I ignored it because of Christmas and I was due my period. I checked again on Monday and it was still there, so i called the dr and saw her today. Hoping she'd say no you're fine just paranoid.

Nope. She can feel a lump and has referred me to the breast clinic.

If you read all that thanks! I've only told my husband and won't be telling anyone else, but fucks sake! This isn't fucking fair. Is this the either thread to wait whilst I figure out what is going on with my twatty tit?

@Gettingitoffmychestt absolutely - that is so unfair. I hope to goodness that it turns out to be nothing. So sorry you are going through this either way - the uncertainty is horrible.

Just also an update and a question about chemo side-effects: I'm about day 11 after my first EC chemo. The nausea lasted just over a week, along with intermittent but extreme tiredness! Then around day 6 I started to get heartburn which became really bad - now I have medication from the GP for that and things are improving. It feels like I've damaged my oesophagus but that it is now slowly healing up. Apart from that right now what I have is much less bad, and it is a tongue problem. Did others get this? I can't work out whether it's normal on this regime, and whether I should get mouthwash from e.g. the pharmacy and if so what? It's like my tongue has this big patch where it is sensitive and also bumpy to the touch. It is not exactly painful eating but more sort of prickly in that area. I'm wondering if I can head this off with the right OTC treatment (having learnt my lesson from treating the heartburn too late). If anyone has any advice I'd be v grateful...

i didn’t need it but mouthwash was mentioned to me several times by chemo nurses so it must exist. Definitely give them a call.

@breastcancerpanic Give them a call. I’ve had mouthwash and gels for paclitaxel.

could it be thrush? Others have reported this on ec.

Hope you’ve not too many treatments left.

@Gettingitoffmychestt so sorry you find yourself here. I hope it’s soon ruled out as it’s just not fair.

@breastcancerpanic I think this is a very common side effect. I got asked every week about mouth condition and saw others on my unit being issued mouth wash and gels. Dry mouth, sores or thrush are very common.

@gettingitoffmychestt sorry this is happening to you. This bit of waiting to find out more is horrible but the breast clinics are (in my experience) very thorough and quick to get you an initial answer as to what it is.

@breastcancerpanic Omezaprole and mouthwash required here from the first EC treatment. The heartburn was exquisitely painful, had me gasping. Mouth was sore within 24 hours. EC is strong stuff. Ask for and take everything is my recco!

@breastcancerpanic I didn’t have either nausea or heartburn but was very tired and I do have the most horrible metallic taste in my mouth. I have felt very “off” today so there is obviously something lurking, hence the neutropenia so I have decided to lie low for the week and hope that things are back to normal for my next blood test.
@Gettingitoffmychestt, this is such stressful time and yes it is bloody unfair. I hope you get the answer quickly.

I had heartburn with EC that was completely fixed with lanzoprazole.

I also had nausea that was fixed by meds, speak up if yours isn’t they may be able to give you different ones. They added olanzapine for me and that also helped me sleep for first few days.

I don't have a drain bag, so it's just from the fluid gluggging about.
It seems drain bags are things of the past, now. (More likely they forgot to put one in!)
I have to wait until next Wednesday, and see if the glugging stops, and phone them, if not.

Anyway, I feel a lot more able to actually take in some facts about everyone else now.

I can see there are plenty of challenges going on and being dealt with.
I'm in awe.

I also had terrible heartburn that started when I was on EC, and omeprazole sorted it out.

Thanks to those who answered my questions.

last chemo on Tuesday (21jan). Hair cut on 23.

Sorry for not having been back on this post for a while. Hello to the newbies, I'm sorry you're here but the vipers in this part of the woods are lovely.

Having finished chemo in mid November, my hair is finally growing back nice and thickly (if only about 1 cm of it so far). I'm so happy to see it coming in. My eyebrows and eyelashes are back too, w00t!

Zoladex and Letrozole is going ok but makes me achey. The tart cherry juice tastes nice but doesn't seem to make a huge difference. Curcumin/turmeric has been effective though.

Still having trastuzumab every 3 weeks but not sure I have any real symptoms from it - although I have felt really really poorly every time I've caught what would previously have been a mild cold.

The oncology team want to do a baseline CT scan on me and I'm freaking out a bit. I know it's probably a good idea but it's bringing back a lot of memories of having my mammogram (when I also felt fine and couldn't feel anything in that breast) and having a horrible surprise. Scanxiety is real! I'm secretly worried they will discover I've got metastatic cancer that we didn't know about, or something grim like that.

I like that I can say that here. I feel I can't tell anyone else about my worries like that - everyone is so thrilled that I'm ”back to normal" now chemo is over and my hair is growing back. But instead, I'm shockingly suddenly menopausal, achy, and full of residual fear!

@londondragonite im about a month behind you. Desperately squinting in mirror every morning to see if hair is growing back yet! I think it might be but if it is it’s blonde as I can feel it but can’t really see it!

My oncology team aren’t doing anything like dexa scans for letrozole or baseline CT scans which makes me anxious but I’m not sure what to do with that.

Im also feeling very achy from letrozole. I started zoladex during chemo so I thought I wouldn’t be feeling so menopausal by now but I do and I hate it. I don’t feel like me. Breast cancer nurse recommended evening primrose oil but said can take 3 months to work.

Im finding it so hard to get up in mornings, im writing this from bed now! Once im up and about im ok, but I sleep 9/10 hours and I still feel tired. And the stiffness when I first get up is so sore. I used to spring out of bed even on weekends. Keep hoping it’s just chemo leftover and I’ll feel better soon.

@londondragonite That residual fear is a thing! And can linger. The dissonance between all the well meaning, well done back to normal chat and what’s going on in your head is very jarring.

Liz O’Riorden was quoted in the Times this week, with reference to the Princess of Wales, and talked of the ‘rollercoaster of depression, anxiety and fear’ post treatment.

Like you I find this thread a helpful space to articulate what others may perceive as negativity.

I’m a year further on than you, and calmer and less anxious than I was. More pragmatic and accepting about the possibility of recurrence. It will. Or it won’t. And there’s f* all I can do about it.

Annual check coming up, and again like you, scanxiety is lurking. It helps me to name it, have a little talk to the fear and then try to go and do something, anything to occupy my mind.

@Gettingitoffmychestt hello - I’m so sorry you’re here, keeping fingers crossed that whatever they find isn’t cancer and if it is is small and treatable. You already know this road is not pleasant but still, we’re all shouting in your corner.

@londondragonite I’m also in a similar place - post chemo, post surgery - the sloshing is probably a seroma @CatonMat - I had a large one which took 3 weeks to go down - it’s fine, a bit numb but ok now. It was really noisy at first but calmed down after a few days. It vanished in three days - on day it was there, then it wasnt! The body does amazing things.

I have my pathology results from surgery due tomorrow. I’ve had a relatively normal couple of weeks with not much anxiety and only a little soreness from surgery. I was feeling positive and now I feel low again. It’s such a rollercoaster of emotions. I’m going to ask them to do a CT scan (the last full one I had was before chemo in July ) but I’m super paranoid about spread. Everything they do to me from now on would be preventative in theory - I’m still on Phesgo until July and waiting for radiotherapy.

My work want to have a conversation about returning to work. They have been great so I don’t mind talking ball park return dates. But I feel like I can’t make plans for anything until I get the pathology results. A partial response would probably only change my immunotherapy to Kadcyla from Phesgo and maybe prompt a change of tamoxifen to something else. Fingers crossed for a full response.

Haven’t caught up but TODAY IS MY LAST CHEMO!!!

🎉🎉🎉🎉🎉 yay @ememem84 !!! You've made it!

@Littlecaf it's Kadcyla I would have to have post-surgery, depending on histology. I was told 14 infusions of it, every three weeks. So I have everything crossed for you that you are clear and don't have to have it 🤞🏻