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.

Hi mrs. Ds has ASD and is highly anxious most of the time anyway so this is going to be really hard. He has ears like a bat so will overhear any phone conversation and has a lot of study leave in the next few weeks so is going to be at home a lot of the time.

I have a 'dh' but we are on the brink of splitting up and he was planning to move out soon. Don't know what will happen going forward now. Have no family nearby and a few friends but none particularly close

Oh dear I'm sorry to hear that. Do you have a date for your hospital appt yet? If it's this week you might manage it for a few days and you have every chance of being fine, no damage done. How are your relations with the school? If he does find out its probably worth warning them so they can offer support if he becomes distressed during the exams. We told the school eventually so they could support DD as she did get upset occasionally.

No date yet. Doctor was going to request an urgent referral and I know it's usually within 2 weeks. I think I have private medical cover through work so am investigating that as it should be quicker hopefully. School will be supportive if necessary I'm sure. How are you doing now?

I hope you are seen this week one way or another, this waiting around is absolutely awful, when your mind goes into overdrive. Stay away from Google, it's not your friend. I'm fine thanks, my treatment was quick, all over in three months from diagnosis to end of treatment. I was fortunate not to need chemo, not everyone does. I'm being monitored for five years, as is the norm. There seem to be quite a few BC scares on here in the last week, it's so common yet strikes such fear into us all.

Thanks
I will keep posting as there's great support here.

Yes do, especially if you're short of real life support at the moment. Hope you're sleeping ok and an appt letter arrives tomorrow.

Super support here. I'm finding this BC business a very lonely place. Mrsrhod thanks for your earlier post. Arm still very sore and am so tired but just want to get cracking with results and find out if I need chemo.

It's just one phase of waiting followed by the next isn't it?!

Yes BC can be a lonely business, and the waiting for the results is the worst bit. If your results are not what you hoped for that is hard for a few days. But then most people resign to it and just want to crack on to the next stage of treatment.

Hi chewingawasp, I'm another one with dc doing GCSE's, with the main brunt of them starting today. I'm over 3/4 through chemo and had a mastectomy and node clearance in December and January, so dd has had a long time to digest that I have cancer, but it hasn't been easy for her.

Rust I hope and doubt that you have been getting some sleep. Try to eat and rest well because newborns are tough at the best of times. I hope the baby blues don't hit too hard. There's a pregnancy section on the young breast cancer network FB group which might be helpful to you.

Soemonen asked a couple of pages back whether anyone else had hearing loss from chemo...I think it was pepper...anyway, I did. It resolved after a few days, but it was weird, like everything was too much for my ears. Dont know if that makes any sense, but wanted to say that I had similar. And I'm doing FEC chemo at the moment just for info.

wasp hope you get your appointment very soon.

FlyChickie I know what you mean about cancer being lonely. I'm really starting to feel that now. I have a couple of lovely friends, but the ones who are being most supportive live the furthest away!

just popping in as I'm not feeling great but ,hearing loss .Yes I have hearing loss and tinnutis after chemo .
Was on epirubicin, oxaliplatin and capecitabine.

Elmin I hope the chemo is not going too badly for you, as you and most people have said it seems to be doable. I'll reply to your DM, just haven't had time to be at computer x

Ginger I remember my mum had awful hearing problems after her chemo. It must be so unsettling for you. Has it settled down at all?

Hi everyone thanks for the messages of congratulations. Little one is doing really well and I adore him. Thanks for that mysilly. I must say I am really struggling emotionally. I literally cannot stop crying. I saw the oncologist for the first time today and walked into his office sobbing carrying the baby. What a state! Anyway he didn't have the best bedside manner and was very matter of fact. After the kindness of the breastcare nurses and my surgeon I found it a bit of a shock. He even went on the nhs predict tool and said 'ooh that's a bit depressing, let's shut that down'. I am a bit distraught by the whole experience. Ct and bone scans being booked and looking to start chemo in next couple of weeks. Hope everyone else is doing ok.

Rustcohle, but of course you are emotional. Bless you. It is stressful enough having a baby. Blimey why do some oncologists seem so detached from the human race! Do you know when you are strating chemo yet?
As mysillydog said up there do focus on YOU and try and rest and let yourself be spoilt if your loved ones are eager to help. Hvw you named your baby boy yet? Take care.

Oops you actually do say above that you start chemo in a couple of weeks. Me and my bubbly brain try and take things one at a time..now focus on coming scans.

rust, that sounds like my first oncologist appointment, and I didn't even have a new baby to add to the emotional mess. I thought mine was talking about recurrence rates and she was talking about survival stats, and they'd said I just needed rads and she launched straight into a chemo conversation. I was incoherent, and rescued by my lovely bcn who put me back together.
The next time I saw the consultant and he was excellent. I'm hoping to get him not her tomorrow at my next appt.
In fact the next time I was there I did see someone ask one of the bcn if the female registrar was actually a real doctor - she was dressed in a kind of skin tight black catsuit with a sort of bib top and a white ruffled blouse. Honest to God. DH refused to let me take a picture.
What she said to me wasn't wrong or incorrect in any way - it was just her delivery.
You are doing so well, you are in all our thoughts

Thanks for the replies about hearing loss - I've always had really excellent hearing (to balance out my very poor eyesight I reckon!) so to suddenly have tinnitus is quite upsetting. It's a very high pitched constant ringing and I'm desperately hoping it's temporary like yours elmindarina but as I have 2 more chemo cycles (docetaxel and cyclophosphamide) to go and it only kicked in this time, I suspect it's going to get worse before it gets better. Like to know what to expect so I'll check with the consultant tomorrow.
gingeroots was yours temporary? I hope you feel better soon.

Agree with it being lonely, no one understands unless they've been through it. I don't think people realise that we've got to live with this hanging over us now

I didn't have any problems with my hearing through chemo but I was extra sensitive to bright light, if seems to have settled now

Rust enjoy those baby snuggles and I'm sorry the oncologist has zero people skills :( like the others have said you are bound to be emotional having just given birth

Rust, sorry to hear about your encounter with the oncologist. I was obviously over optimistic in thinking you would get top notch care. How can a dr be allowed to hold such a sensitive role with no people skills, it really annoys me? I wonder if anyone ever confronts them about their attitude, I'm getting old enough to dare now?

Cancer is very lonely and sometimes the people you expect to be the most supportive disappoint you. It just adds to the mental turmoil, I'm not sure they mean to be unkind but it hurts. I also believe that ignorance of the condition makes people believe that as soon as treatment is over everything goes back to normal. Hopefully we will all remain well but normal doesn't exist anymore and I've tried twice to explain that to friends. Neither of them got it so I gave up. I rarely mention it now, people seem to find it so awkward to talk about.

Hi all, just popping in to say congrats to Rust on the safe arrival of baby Rust and wishing you all the best with your next stage of treatment. Some doctors just seem to have awful patient skills, my surgeon is like that. I try to console myself with the fact that the cleverest people tend to be like this and feel confident that he will be an excellent and knowledgeable doctor.

Regarding hearing loss, I found Docetaxol seemed to dull the hearing for a week or so after each treatment, it was as if your had in a bucket and could hear rushing sounds like your own blood flow. It soon went away though.

Adding my congratulations to Rust such fantastic news about the birth. Good luck with the next stage of treatment, everyone here is with you and supporting you through it.

Pepper, Fresta I'm so glad you mentioned the ear ringing and the 'head in a bucket' thing because I genuinely thought I was going mad during chemo last year. I would lie in bed and be able to hear my heart beating so clearly as if I was inside my own body. It was totally bizarre and nobody else knew what I was on about. It completely disappeared afterwards though, so that was a relief.

Hi all. It was my birthday on Monday - seems weird to think almost exactly a year ago I was celebrating my birthday in a bittersweet way - I had had my first chemo 2 weeks prior and was worried about my hair falling out in time for my birthday party, but the cold cap did it's job and from the photos you wouldn't have known I was ill or going through treatment at all. This year was quieter - the in-laws are visiting and work is busier so no big party - I think I might start saving now for a massive 40th though in 3 years' time!

Ref: people's doctors/surgeons having a crap bedside manner... I tried really hard to get on with my first surgeon, but she had NO time for me... I was travelling all the way from Rome for consultations with her, and yet I felt that every time I asked her a question, she got cross that I was wasting her time (I researched the surgery a lot, so had a lot of questions!) so in the end, I trusted my judgement and got a different surgeon (which I was able to do through the open-referral system on BUPA). And I LOVED my new surgeon - he came highly recommended and he has just finished my final boobs - I have no idea if I am allowed to post boob shots on MN, but will give it a go (sorry if this offends anyone - hope not! - the line on my left boob is from my bra seam..)

So the pic is a result of a double (nipple sparing) MX and immediate recon using implants and ADM, and I am so happy I made the choice to change, as I love them now (they were AWFUL post breast feeding 3 babies in 3 years!) so this is a huge improvement from 6 months ago. I feel like they are kind of a (tortuous) birthday present to myself.

Hope Baby Rust is feeling well and you are getting some rest.

Handholding needed please. Went to breast clinic yesterday after ongoing breast pain issues. Consultant said breast with pain is firmer than the other breast and she could feel a fuller area. She said she wasn't worried but sent me for ultrasound. Ultrasound lady said nothing to see at all. Consultant then decided to do core biopsy on the fuller area "just to allay your fears" but said she wasn't worried and I shouldn't be too. Am now shing myself as have been to GP's about 10 times in 18m and no fullness was ever detected. Also the fullness is exactly where I have been getting some sharp stabbing pains so now convinced I will go back next week to bad news. Suffer with anxiety already. Consultant said she really was not worried but due to friends BC I know that ultrasounds and consultants don't detect everything. SHT!

Hi mishmash I didn't have breast cancer so can't offer any specific help, but I will hold your hand while you wait.

When will you get the results?

It is good that the consultant is being thorough, though an extra thing for you to worry about. A clear ultrasound and a not-worried consultant is promising though.

Good luck

Mishmash, you are in the horrible waiting phase. This week is not going to be a nice week for you, but I promise that whether you get the all clear next week or need further treatment it will be better than the waiting. It does sound promising that the consultant was not too concerned, and hopefully having the biopsies will reassure you if you get the all clear that it really is all clear.

Boobz - Wow you look amazing and happy birthday. I suspect MNHQ will remove the picture, but I'm glad you had such a great result from your surgery.