BBBs

[misswoof-88]

Sounds like another white coat with “foot in mouth syndrome “ to me

I, thankfully, didn’t have the delights of left side breath hold. But, when I was sitting, waiting, in my changing cubicle, with my funky tunic/babygrow popper job on, I could hear the radiographer talking through her headphones to a lady in the radio room. And I did try to follow her breath hold, just out of curiosity. She said “and - hold…” So, I held my breath. Jesus! What a wait…. I don’t know how you do it Sheelagh respect. It seemed like eternity until said “and release”. I was relived to be a right side’er.

How are you managing with the after effects? My boob is darker than the other one this weekend, I’m rather hoping it’s a temporary thing. I’m certainly tired. I had a soak in the bath last night with a gallon of Oilatum poured in. It really helped.

I seem to be waking up with a headache everyday since I started radio?? Anyone else getting them? Of course it could just be the meds kicking in too. I’m into month 2 and it’s interesting … good days and bad but I think the radiotherapy just wiped me out… it’s taking a few days to feel normal again. Hopfully much better by next weekend xx

[bellalasagne1]

Are you drinking enough (water, wine sadly doesn’t count) as I saw/read somewhere that radio is dehydrating.

Need to balance that with the midnight granny wee/insomnia issue but that might be a cause?

[lottie73]

Good morning ladies!

I am still here and rolling up laughing reading all of your posts you bonkers lot

Thank you for asking about me and caring, I really appreciate that

Warning long post as I haven’t been on here much recently

I am all good, just been bloody manic busy! I started my radio on the 2nd Oct so had two sessions before a weekend break and I thought “great, a nice little rest”. Oh no that did not happen …… Saturday was spent watching Lily play hockey, which I do enjoy, and then over dinner we sat talking about a Christmas present that we had bought Lils last year - an afternoon at The Royal Albert Hall for The Best of Broadway (we do like a bit of musical theatre in this family!) I thought we had better check the date and bugger me it was the next day (Sunday) so good job we checked! It was then a mad rush to get hairs washed and styled and clothes to wear that were comfy and didn’t rub on my poor sunburnt boob too much which was a good game Well bang went my nice quiet weekend and hello to my bed as the trip to London completely knocked me out. Thankfully I had bought a car park ticket so we were able to drive rather than go by train which was a godsend! I’m really struggling to get through this lingering tiredness and feeling more like 82 than 52 with all the early nights. I’ve never really gone back to normal since the op but hey ho I’m sure it will sort itself out soon

Had my last 3 treatments the start of the week and all went well. I don’t seem to have suffered with a hot boob yet but it’s definitely very pink and tingly so lots of loose clothing. Back to work on Thursday and had a meeting with the accountants so I found myself apologising for the scruffy oversized shirt but they were lovely and even turned off the heating in the room so it wasn’t too hot for me, though it was bloody freezing instead

Travelled to Bedford yesterday to watch Lils play hockey and then a nice pj evening playing board games with the family. Lily’s boyfriend has been amazing through all of this too and goes out of his way to make Simon and me feel comfy and at home at their house which has been amazing - not all young people are thugs like we read and see on the TV.

I’m a 6 weeks into the Letrozole and so far the only side effects that are bothering me are the nightly flushes and the bleeding gums. I’m really hoping I don’t lose any teeth Haven’t noticed my hair thinning but I use a thickening shampoo and conditioner anyway so maybe that’s helping

@smak I am leftie too so had the breath holding to do too. Once you get the hang of it it really isn’t too bad. After reading online about left sided radio I thought I’d be clever and practise deep breaths at home but I kept coughing as I was taking a sharp intake of breath through my mouth and then shutting it whilst holding my breath. This is NOT how to do it When I had my scan appt my radiographer told me to take a deep breath in through the nose as though you are about to smell a lovely flower which really helped. He said that it needs to be gentle breathing not gasping as you just end up coughing and sneezing. I then practised this new way a few times and it came like second nature to hold my breath for up to 20 seconds. Thankfully I only had to hold it for 10-15 seconds at a time and didn’t cough once!

@pmeg14 Welcome to this crazy group. I like you only had a lumpectomy (double), lymph node removal, radio and hormone therapy. I like you haven’t had the additional traumas the other ladies on here have been through. I like you was also told off for using the word ONLY! I have learnt from this fantastic group that cancer is cancer and it doesn’t matter the size of the lump or the extent of the treatment. Cancer turns your life as you know it upside down and that happens to everybody. This group is all about being there if you want to rant, talking openly about treatments and how side effects are affecting you and just generally picking each other up on a down day. You probably are already aware of this but be careful if you’re reading some of these posts with a cuppa in hand as it could go everywhere with some of the honesty

I’ve missed you ladies and as my tiredness gets better and I’m awake for longer I’ll reply quicker, I promise!

That’s my essay for the day! Hope you all have a lovely rest of your weekend

Sending you all lots of love and good luck to those with treatments or appointments this week.

Charlotte

[lottie73]

This is great news! Good luck with the rest of treatment, you’ve got this

[pmeg14]

Hi Charlotte, thank you for welcoming me into this, as you put it, crazy group! I say there’s not enough craziness in the world so it’s good to know there are some crazy BBBs out there ! Today I had a walk with a friend and we had the most joyous time kicking through piles of fallen leaves with gay abandon, reliving our childhood - at the grand old age of 74 ! Now I’m back home having a hot flush !
Hope you get over your tiredness soon.

[amafoss65]

Hi, I had my first session yesterday and now I can’t sleep 14 more…. It was better than i thought… I was getting so anxious about it all. I did take a blanket to keep me warm and cover up walking across the room to the bed. I can’t remember, when do you start your sessions? They helped me with the breathing exercises as well and were very helpful. It took 15 minutes but I had a 40 minute wait as they were running behind. All the best to you all x

[smak]

I have my first session on Monday. In hospital today for a procedure unrelated to cancer . Hope everyone is ok x

[misswoof-88]

Hello BBB’s… I’m awake at silly o’clock again …. Another night sweat which seem to be getting much more intense now & every night.
Went out for dinner with friends last night and I struggled to swing out of my car seat after parking the car. I seem to have lost a bit of strength, which was both alarming and embarrassing in equal measure-with my hb and friends all trying to man handle all 5f 10” of me from behind my steering wheel of my small 2 seater sports car (think: “right, on three… HEAVE!!!... Argh!!!...) … bit of a shocker…
I just didn’t have the strength to get myself up. It’s not a nice feeling

And now here I am laying on a towel, drinking decaf to try and re hydrate and fend off an headache, AND my hair looks like I just spent a month in the jungle!! … urgh…Gawd! It’s not pretty!

I feel like aliens have taken over and they’ve got a sick sense of humour…

How’s everyone else doing on their AI’s?…

@smak how’s it going after your hospital trip lovely? Hope you are doing ok

Hugs all round

[misswoof-88]

Did the same to me Amanda. You have my sympathy lovie. I found the first session the worst one, by far. The changing times and delays are par for the course I’m afraid. My hb had 39 fractions last winter (that was fun ) for prostate cancer and it was all over the place. Rarely did he get in & out on time. I fared better with mine but I did get home 2hrs late on one day… I just took a book and read. Some days I did go straight in and out

Good luck for the rest of it xx

[bellalasagne1]

Morning Amanda,

Urgh sorry you had a bad night, I’ve been there.

Is this your first time facing menopause? If so this is probably why it’s hit you hard?

It hit me hard first time but I was only 43. This time around i haven’t really noticed it much (sorry to sound smug!), maybe because my hormones had already been shifted out of shape once (I’m sure there’s a technical term?)

Other than that I’m doing ok thanks. Work is still horribly busy. Was at an away day event this week - and yes I remembered my boob this time - which had a social in the evening. I lasted until 9pm then hit the wall. What a party pooper and fun BBB I’ve turned into

It had been a very long day and I’d been presenting for some of it but even so wasn’t expecting to have to make my excuses so early like an octagenarian!

Hair is still falling out but anxiety level is better. As I said last week, I couldn’t tell what was causing it. Today I think it could’ve been work as I have had some key events/issues over the last 2 weeks, the away day mentioned being one of them.

I have a final formal follow up appt with a BCN in 2 weeks (then the protocol is for me to call them if I need anything) so will feedback any remaining symptoms then.

The Onc did try to phone me back once this week but I was in a meeting, having asked that she emails for this very reason so I still have no answer on my 2 different sets of stats.

Other than that, all good .

Have a great week BBBs and cross those zaps off the list - you can do it!

Bxx

[misswoof-88]

Evening Bella, you obviously have a very intense job that is pretty full on right now. I don’t know how you do it lovie! I need to bow out by 9pm on a normal night, never mind a business function

Re my night sweats/menopause. Not my first rodeo, but these are much more regular than first time around. I went through peri from my late 30’s/early 40’s and that gradually got worse until I went on to hrt about 4 yrs ago. First time around, the night sweats didn’t happen every night but they were much more intense than these are. But these ones are 2 per night! And I’m getting flushes every hour of the day now, which were very rare in the day last time.
Back in peri, along with the “red mist” rage and brain fog, heart burn, mouth ulcers, dry skin, tinnitus, and feeling dead from the waist down, I began getting migraines that would come on very suddenly and often last 2 days. They were what finally prompted me to try hrt, which worked a treat. All of the above became a faded memory. Up until now

I can cope with the hot flushes, but I need my sleep! I’ve had a bout of cluster headaches this last week and I’m concerned that I might be headed back to those migraine days again… that’s how it went back then… urgh.

I guess time will tell. I did give myself a short break from anastrozole when I switched brand & I felt so much better, so it’s not “menopause “ as such, it’s the aches and sweats from the AI’s that are wearing me out.

Hay ho I’ll see how things go this next week. I’ve got a med review in the diary that’s not far off, so I’ll discuss my options then.

I hope you get your own discussion soon- re your conflicting stats. I wouldn’t be impressed about that. You need answers.

Hope your coming week of work is less involved for you. My dog business is over the summer season madness now, so I get a bit of respite between now and Christmas. Nice easy few weeks coming up for us that I definitely need!

[bellalasagne1]

Glad you’ve a few easier weeks coming up, hope it helps x

I used to get migraines too but think that was high blood pressure before it was diagnosed a few years ago.

Yep that’s my only beef with the NHS, they assume we can just drop everything to meet with them. I explained to Onc’s sec on the phone that I can’t take calls during the day (phone is on silent in another room) so have just asked for either an email reply (but I’m guessing they don’t want to commit to an answer in writing) or a phone appointment. Let’s see…

Yes job is full on. It’s new for me (and apparently everyone else) to be going through this madness while also being a leader. I am actually ‘The Boss’, run several portfolios of projects worth £100M’s and a team of 65 people. If anyone else reading this is in the same position and can offer any advice it’ll be gratefully received.

My managers (x2) have been very supportive and I have Reasonable Adjustments (RAs) in place, meaning I can take time off for appts and if I’m feeling rough (@lottie73 as before this is legally mandated of employers). So far I’ve not needed anything post radio however I have struggled a bit with the travelling and long hours but this tends to manifest itself at the w/es so hasn’t directly affected work. As the nights draw in I’ll manage this by driving less and letting the train take the strain so it’s do-able at the moment.

So, I’d best get up and get on with it! Have a good day/week all. Catch up soon.

Love B xx

[smak]

I need my BBB’s

[amafoss65]

You ok? How was today? I’m awake again… done 3 RT sessions so far and starting to feel it,. Have a sore throat which I think is from the clavicle RT… will speak to team tomorrow as I can’t have another 12 sessions with this pain. Hope you’re doing well xx

[smak]

That sounds awful and very early in your treatment. I start mine today. Sick of it all now. Yesterday I went to GP as I have a pea sized lump in my neck. I just wanted reassurance. She was an Indian lady who never gave me eye contact. Spoke to me while looking at her computer screen and typing away on her keyboard. I couldn’t understand her accent so had to continuously ask her to repeat what she said. She remained glued to the screen. She had a very brief look and feel of my neck and was suddenly referring me back to hospital with suspected ‘neck and head cancer’ !!! I came out distraught because this is not cancer. My margins are clear and lymph nodes are clear. I’m getting to the end of my treatment. I thought she over reacted but guess what ……so did I. Came home and went on line to cancel blood test and then……changed to a different GP practise How’s that for over reaction !!!
Thank you for listening to my rant ladies xx

[bellalasagne1]

OMG honey, what a nightmare and I’m not surprised you reacted as you did x

Deep breaths….how are you feeling now?

Do you still have that referral or has changing practises cancelled it? All I would say, and you may not like this, is if you have a lump you do need to get it checked out to put your mind at ease, horrid as that will be.

Big hugs xx

[amafoss65]

Good luck today, once you start it feels better, I think. Bloody hell, poor you! That sounds a horrible experience at the doctors but you should get it checked out just for reassurance. Our bodies are all going through so much and it’s hard to not over react! I know I do! Can you speak to your oncologist or breast cancer team?

It will get better xxx

[amafoss65]

Hi Bella, thanks for your message. I’m post menopausal and touch wood… don’t seem to be getting too many symptoms on the letrozole besides the odd hot flush. Some nights I just can’t settle and it takes a while to get to sleep, I was like this before the cancer diagnosis as well, although anxiety in the middle of the night has made it worse. Aided last night by our Labrador wanting to run around the garden at 2 and 3am looking for hedgehogs I’m in a fortunate position where I stopped working back in April, just before being diagnosed… there’s an irony! I totally empathise about your career, I was previously a sales director for a large IT company and that was full on travelling, presenting and customer socialising. I think it would be really hard to have continued whilst going through this treatment although a great distraction and a slice of being normal. I miss the buzz and the people, but not the stress. Hats off to you for being the Boss queen and I hope your team are very supportive. I am sure they all respect you with everything you are managing

Have a good day everyone! Onto Day 4 RT
All the best, Amanda xx

Ps try biotin for hair loss, you can get chewy gummies and I’ve found they really help

[lottie73]

Good afternoon lovely BBBs

Hope you are doing okay, especially the ladies going through RT right now.

I have a quick question, are any of you on Letrozole and if so which brand are you taking?

I’m on the second month with a different brand to the first month and the pharmacist assured me there was no difference between the two. Well I’m sure that’s a lot of b***ocks as I can’t move for pain I had side effects the first month such as hot flushes etc but they were manageable. I am in so much pain now with my lower back that it’s making me feel sick and I generally have a high pain threshold. I spoke to one of the BCNs who told me to persevere with the rest of the month but ask the pharmacist not to give me that brand again as it’s causing severe tail pain. Have you ladies heard of this?!? Not seeing the oncologist until December but I can’t take this pain and not being able to move or climb stairs easily for that long!

Lots of love

C xx

[bellalasagne1]

Yes, Accord