All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Glad you are doing well rover and great news re the nodes? Wishing fresta all the best.

Good news rover, and I hope Fresta is recovering well,
I got my echo results and my ejection fraction is 55% which is a bit below normal but ok for me and no change from baseline. So I start paclitaxel and herceptin on Monday. I'm very nervous about the herceptin because of my underlying cardiac issues but I have to trust my doctors.
Sleepy I'm so sorry that you are having a hard time. I hope the treatment kicks in soon.
Rust I hope your doctors can reassure you. Once all the path results are back they can give you more information. I didn't want to know my predict score, but some people like to know as much as possible.

Rust, I think an awful lot of work is being done around triple neg, if that's what it turns out to be. Amber has posted some very encouraging things about it.

Rover, onwards and upwards. Persist with the exercises, the discomfort shouldn't get any worse.

Sleepy, what can I say, I hope you are feeling more comfortable soon?

Very relieved to report a clear mammogram again two years after diagnosis. Having a celebratory G&T.

Very best wishes to all.

Stuck in hospital tonight as I went in for a blood test this afternoon and it showed my Hb level at an all time low, neutrophils almost non existent and platelets also very low. So going on antibiotics and having my (all too regular) blood transfusion tomorrow. So it was a good idea not to go into work today ...

Love to everyone especially sleepy I hope things pick up for you soon

Lily I'm sorry you are stuck in hospital hope those levels are up soon

Mrs Rhod that's great news ! Enjoy your g and t

Not much to report here, had a lovely Easter break and been busy at work this week

Good morning all. Mrs that is great news. What a relief :)
Silly and lilly, i feel for you. Hope things get better and you get some reprieve soon.
Have a good Friday all.

Sleepy, i hope things get better

Morning everyone, surgery went ok after minor drama with surgeon getting me confused with another patient and telling me I had 3.5cm of calcification in addition to tumour to be removed. I couldn't understand why I hadn't been told about this before- he just said ' never mind' only when I got to ultrasound for wire putting in did radiologist twig the mix up and set it out! still in hospital, have option to go home with drain or wait til it's out, not a lot coming out to be honest at the mo. My blood pressure is too low too, had checked every hour through the night so shattered!
Sorry for the me me me post but thinking of everyone else and sending special best wishes to you sleepy- hope the treatment has some effect and you don't feel too much worse on it.

Good to hear all went well fresta. Funny how the surgeon confusing your case with another patient's! Sad how ae are just. Numbers and paper work to most of them in the end! Perhaps staying at hosiptal is better for your well being. I had low blood pressure too post surgery . Had a nasty fall when I blacked out in the loo:(
Take care.

Best wishes to all - especially those who have had operations. Fresta - it must have been worrying to be muddled up with another patient.
Last night was my first in hospital since DS2 was born nearly 25 years ago. The bed was really uncomfortable and the duvet kept coming out of the cover ... And that's in a private hospital! Breakfast was fine - DH came in to collect my car and ate half of it. Out at lunchtime after a morning of day time TV.
Sleepy' - I hope the peachy pills work again for you!

The mix up was very worrying, considering I have very little confidence in the surgeon, this is the second time he has confused me with another patient with virtually the same name as me and same condition. He has been practising a very long time and the nurses seem to just shuffle him around- he is almost ready for retirement but has a good reputation apparently. Seriously lacking in bedside manner I'm afraid. lily sounds like you will be glad for your own bed tonight. I'm going home later with drain in, doctor not concerned about low pressure as seems to be coming back up a little now.
In other news just had email offering dd a place at the grammar school, she just missed out on a place and hs

Sorry , posted too soon by accident- place become available now for sept- she had previously missed out by 1 mark! It is a super selective grammar so very hard to get into as no catchment, just first past the post with kids coming from miles away! So good news to go home to- can't wait to tell her !

Afternoon all, fresta and rovercat, glad you are both recovering and it's all over and done with. I find it very frightening that you can get as far as the wire guide and only then them realise they have mixed up your notes though
sleepy, I hope you get some relief soon and the new drugs kick in as quickly as possible.
I survived my first chemo, the cold cap wasn't nearly as bad as I expected but that's probably because I've still got hair
Anyhow, I feel properly rubbish today, but haven't thrown up so I'm taking that as a good sign. Quite irritated by DH trying to take my temperature every half an hour though - while holding the phone as if he's about to call an ambulance. He may need to relax just a tiny bit for us to get through this.
Annoyingly I missed the district nurse this morning when she came to give me my injection. I must have been in the shower and DH didn't hear the door. Very frustrating, she's coming back later but still. Why didn't she ring from the doorstep to check as she knew we were expecting her??
Lily, hope you get home today and mrs, good news on the scan.

Pepper, hope you continue to have few side effects. Didn't mean to worry anyone with traumatic tales, I think it was more a case of the surgeon speaking from memory, he had my correct notes in front of him but the wrong patient in his head. I don't think I would have got to surgery without them realising. Anyway, all's well that ends well. I am back home now and waiting for dd to come home from school. The drain is a bit of a pain to carry round, I keep catching it on things, so have it in a bag now over my shoulder. Not in too much pain at the moment but my shoulder is stiffening a little so trying to keep it moving.
Royal, I think they see so many patients it's hard to keep track. They actually took my bed away from me this morning to prepare it for the next patient because they are so busy, and they are closing the hospital in the next town so all patients from there are soon to come through the hospital I am at. I've no idea how on earth they will make the space!

Quick question - I feel pretty shite today so assume my immune system is pretty down - DS2 has been invited to a playdate this afternoon where one of the kids has glandular fever, she's jaundiced apparently and been off school for 4 weeks.
I don't want to curb their lives any more than the cancer already has, but I'm very uneasy about sending him. Shall I just say it's safest if he doesn't go?? I don't think glandular fever is catching?? The dad said it was fine for me to check and then decide so I do have an "out" just feel guilty.

I don't know pepper. It's really rubbish isn't it. You need to make a decision that you feel comfortable with. My kids came down with d&v at my nadir and I was hand washing like crazy. I think days 9-10 are the lowest with days 7-14 being generally risky. I'm not sure what day you are on. Did you get your injection yesterday? If it's GCSF it will take a few days to release mature neutrophils AFAIK.

Thanks silly, we decided it wasn't worth the risk, he's fine about it I just feel bad. I'm only on day 4 so a way to go yet! I did get my injection yesterday but they're worried about the picc line, even the non allergenic dressing is causing a reaction so no idea what it may do if I need it in for a few months. If it blisters again I'd have thought that was a direct route for infection...

If it's any consolation pepper I would have made the same decision - I understand it is contagious/infectious (whichever is the correct term!) for quite some time and you know what kids are like for "sharing" such things! I've had a couple of colds during chemo so far and felt awful even though they were only mild. Really wouldn't want glandular fever!

Hi everyone, fresta and rover hope you are recovering well and getting lots of rest. Good news about the lymph nodes rover
Lily hope you are feeling better

pepper are you doing FEC chemo at the moment? I had my first on Thursday and felt rough that evening, but now feel like I have a mild hangover...not too bad. And I'm doing those injections myself - starting Monday! Hope you start to feel better soon.

Does anyone else have a PICC line? Mine started bleeding a little at the insertion site today - spoke to a nurse at the hospital over the phone who said as long as it's only a little, it's best not to disturb it and to leave it until my appointment on Tuesday to have the dressing changed. I find it really uncomfortable. And I found the whole thing really horrible when they were putting it in last week...I cried in the changing room afterwards as I felt so sorry for myself.

Sending you all good vibes and hope you are all having a decent weekend. DH and I are off out tonight to the theatre. He is freaking out about all the germs on the tube, I am not. I am known amongst friends for getting on and off the tube without touching anything.

Hi all.

Probably the best decision Pepper. I hope you start to feel a bit better soon. Are they going to get you to do the injections yourself at some point? Nobody would come to me so I learnt to do it myself after a lovely nurse at the surgery showed me.

Sleepy- hope the treatment eases your breathing. Thinking of you.

Lily- glad you are out of hospital.

Fresta- good that you are home. Once the drain is out it is much easier so hopefully that won't be long for you.

Good news Mrs.

Rust- one of my lumps was triple negative. the chemo did its job and the surgeon
had a good feel of my reconstruction this week and all good two years down the line.

what with the oncologist discharging me and now my surgeon happy I hopefully will not have to step inside the hospital for another year.

Hi everyone, pepper I think I would have made the same decision as you, the risk of you catching anything is probably tiny but at least it won't be on your mind if you avoid it. I was told 7-10 days is when your immune system is at it's lowest point.

The drain had over 100mls in this morning, it will either come out on day five or when there is less than 50mls in 24 hrs, whichever comes first. I have been trying to do the exercises I was given, my shoulder is very stiff still but I did manage them.

Hope everyone is having an OK day and hope you enjoying being back home Lily.

Hi all hope everyone is ok. I have a meeting with breast surgeon on Tuesday before my op on Thursday. He's keen to do eke and axillary clearance but I'm really not sure if I would be better off going for a mastectomy particularly given that tamoxifen is not going to be an option for me as on ongoing treatment. The way I feel at the moment is that I want a double mastectomy and that I have to approach this as aggressively as possible. Has anyone got any advice? Many thanks.

Sorry wle

I knew from the beginning that I wanted a double mastectomy but that was also linked to my family history. It turned out that I was BRAC1 positive so the surgeon was happy to do it. My friend wanted a double but they would only give her a single as they said she wasn't any more at risk. It is definitely worth talking through your options on Tues. From people I have spoken to they seem keen to not do any unnecessary surgery but I understand about you wanting to minimise your risk.

Thanks speedy. I haven't had the gene testing yet. I will have a good chat with him on Tuesday but my feeling is that he's keen to do a wle, not sure why really.