Glad you are on the right side of things Bythesea!
No, not a paid job - I'll need to find out more details about it but I would think they just want a patient voice on various issues - they need to be seen to be inclusive when making decisions about future changes to pathways etc.
Number 7 ticked off - officially been told to avoid wearing bras/crop tops. No sign of sunburn but some signs of irritation under my boob which will be a contact thing. The underside of my boob isn't used to being exposed to anything - not that the rest of it is much!! And it's obviously an idea place for moisture to build up etc.
Felt sooooo tired yesterday, but I think it was more to do with not sleeping well the night before. Got 9 hrs in last night and feel back on form.
Gynae appt tonight!! Not looking forward to it - really hoping for a non-surgical solution but I'm not holding my breath!!
JC - bad news about the tooth - good luck having the work done.... not the best way to spend an afternoon!
Bythesea - we need to have a little talk with your body! You should be asking for loyalty points for the number of nights stay in Casa NHS! Bless you, do you know how long they expect to keep you in?
Sending lots of positive infection busting vibes your way.
Wish we were closer - I would have popped in and eaten all your grapes!! (Red grapes - very good for water retention!)
Anadan - hope you had fun at your celebratory meal, I am sure you did. Now rest up and see out the last of these SEs
I was completely knackered yesterday, didn't sleep well Monday night, so was tucked up in bed by 9.15pm and slept thru to the alarm at 6.30.
Just off for rad 7 now - out into the fog!
love to you all
I've finished rads so just the Tamoxifen know but it's going to be hard to know if side efeeffe are going to be chemo leftovers increased fibromyalgia symptoms or from hormone as they are all similar😂🙃
Hope the rest of your treatment goes ok
Hi Otter, just popped over from the Oct thread! I finished chemo a few weeks ago and still got some neuropathy in my toes and finger-not great that I've still got it and it could take months to go, but reassuring that it's normal!
Have you finished rads as I don't see my onc again until then x
Yes definitely just have to realise that the weight will take time to go but will be hard
My hair is getting a fluffy covering all over mixture of grey and dark so not sure what colour it will be but hoping it grows quickly as its getting very hot wearing the wig not helping with the hot🌶🌶🌶 flushes
Sunshine here in Kent - rearranged my pots in the garden .... again!!
Otter - at least our oncologists are giving the same message - frustrating but nothing we can do about it!
Your onc is definitely looking after you - I next see mine in June, last week was only for trial consent and then it will be every 12 months, staggered to be opposite the surgeon's 12 month check up .... so I get to see someone every 6 months.
Hair is definitely growing, I have a distinct six o'clock shadow appearing all over, apart from the front! Can't wait for it all to catch up to the same length so I can just let it grow, grow, grow.
Well done Anadan hope you get home soon so you can rest 🛏🛏
Saw my nice oncologist today for review she checked me out and all ok
The hot flushes joint pain weight gain and neuropathy are all normal leftover side effects from the chemo 😱😱😱😱 and could take months to settle down
All she suggested was excercise and a good diet 😝😝😝 so nothing new there as easier said than done
I will be on Tamoxifen for 5 years + and the SE can be the same as I'm already getting so a double whammy 🙃🙃🙃🙃
Will see her again in 3 months then if all ok every 6 months to a year
Dull Dul here 🌧🌧🌧
Hope everyone is having a good day
trust me anadan - I need a wig - all white and whispy - I think you've seen a pic of me in a wig!
I cut my hair again at the weekend and it definitely seems to make it more like real hair rather than the downy stuff.
Well done for getting to the last T - what an achievement - you should be so proud of yourself. Lets hope the next three weeks are kind to you as you get over the last one!
What's next on your journey?
I’m in the unit, the last dose of docetaxel is dripping in (reduced dose this time, 80% of the previous dose) and I’m feeling excited 😃
I think my hair has started to grow... it’ all white and fluffy though, was yours the same at the start? Lesley, I’ve seen yours somewhere in the photo, it looks amazing! You don’t need a wig any more 👍
Have a good day 💜
Lesley - I think that is my size glass!! Cheers 🍷
Also, it was a fantastic suggestion for you to be a patient advocate. You're brilliant on here
How are you doing with your ☢☣, when are you finishing?
Fmb I hope you're having a fab holiday. I think it was a really great idea for you to go away. I've been on letrozole now for almost 3 weeks and apart from a bit of light headedness/feeling dizzy I've been fine 🤞
Carole, HF & Bythesea how are you all doing. I hope you're feeling rested and on the road to recovery.
Anadan I had achy and shaky legs during docetaxol and took a bit of time for them to feel normal again. Brilliant news that you're nearly done. Good luck 🤗👍
Otter, how about you now that you've finished your rads
Lush shampoo bar is arriving any time soon - soon we'll all be sporting luscious locks 👧
Wishing you all a good week xxx
Told OH that I was only having one glass of wine on Friday - walked out of the room and came back to this!!
The laws of surface tension ably demonstrated!! 🤣
Busy weekend for me - rebuilding the green house at OH's and jetwashing the patio at mine!
The weather had better pick up now!
Another week of rads for me - started having a little redness under my boob - probably not seen the light of day for a while! I'll ask them about it tomorrow.
Hope you are all ok
so much has happened in the last few weeks! Well done to surgery and rads girls, everything’s happening so quickly.
Bythesea, rotting news, but we’re here for you 💜💜 The headspace man said today, it’s good to share your journey, it takes the weight off your shoulders.
I’m waiting for my last docetaxel next Tuesday, I have no energy whatsoever did you get muscle pain in your legs and arms on docetaxel? My limbs are so weak and shaky, I would never do 15 mins on a bike, Lesley, well done you. 8 sessions of chemo is far too many ...
I’m planning to take the girls out for a meal on Tuesday night to celebrate the end of chemo while I still be feeling ok, before the injections start their tortures for the last time.
Fmb, enjoy the holidays!
Have a good weekend xxx
Oh Bythesea that's very sucky - big hugs and thoughts from over here. It's such a mind game, isn't it? We cope with all the physical indignities they throw at us but dealing with the feelings is like another full time job. Which is why we're all here for you!
Much love, ladies, from a bruised and bloody but cheerful HF.
Oh bless you bythesea - at least you will know what to expect!!
We will be here to hold your hand all the way!!
I will be very careful if approach by any strange men sat in flat back trucks with a grabber arm - only way you could kidnap me at the moment!!
have a lovely weekend everyone
Just thought if it's going to take that long to lose the weight I suppose I better buy so e trousers that fit as living in jogging bottoms at the minute but can't wear them when I start back at work 😂😂😂😂
Thanks for the info So I'm looking at 2 years to shift the 2 stones I've put on😂😂😂😂😱😱😱😱
You will make a great advocate but maybe not in your gold hot pants 🌶🌶🌶
So good to hear you in such good spirits HF - we wont blame that on the drugs. But as Carole says, take anything on offer!!
Lush bar ordered!!
First week of rads complete! 4 down 16 to go!
I also saw the onc and signed up for the add aspirin trial - get my first batch of drugs next friday.
Ok ladies, weight and water retention!! Not great news I am afraid.
Basically onc said that vitamin and supplements were a waste of time, if we were deficit it would show up in the blood work and we would be prescribed something for free - rather than paying a fortune for over the counter solutions.
Water retention and weight are, unsurprisingly, related. And its all down to cardiovascular activity.
She asked me what my exercise regime was, I told her 30 mins brisk walk and 15 mins on a static bike every day. She said this was good and to continue with this and build it up as I got stronger. She recommended 1600-1800 calories a day and to avoid the empty calories of alcohol. But not to deprive myself of the odd mad moment or day. I told her I was looking at 1200 calories a day and she said if I can manage on that to continue.
She reckoned that after chemo and rads it will take a year to shift a stone!! Yes you did read that right!! Where you might expect to lose 2lbs a week, she said we should expect to lose 2lbs a month. And it's all down to our hearts.
Its the T that wreaks the havoc with the cardiovascular output. That would explain me nearly flagging a taxi down as I walked from St Pancras to Euston the other morning. This needs to be rebuilt and it takes time. But when the water does goes, it will go quickly and should give the weight loss a nudge!!
I am seeing her again at the beginning of June, if I am still blobby bloaty she will consider a mild diruetic but she stated she is reluctant to interfere, the body needs to rebalance itself naturally after all the chemical onslaught - which makes sense.
I asked her if there is anything I can be doing to help the fluid on its way and got a very definitive NO!
She has also asked me to be a patient advocate for the area - which I said I would do. She also asked if I would be interested in working with a husband of a BC patient who wanted to set up a support group for partners - something that I think is massively overlooked. Looks like I am going to be busy!!
Sorry for the long post - but hopefully it's useful ....... wouldn't it have been good if we had had this information in advance - I know I would have approached things differently!!
Happy Friday everyone
Good morning all!
Harryfiddler signing in, alive and well, if a little bumped and bruised. Surgery went well -- amazingly small cuts -- and I had my first peek at the finished products this morning. Very peculiar to see two little mounds. Not frightening at all, but there is so much to get used to! Getting used to carrying the shopping around -- volunteers make cute little bags to carry the drains. Rotten couple of nights -- my sinuses flared up again because of the aircon (thanks chemo SEs) -- so ended up with raging headaches. Had a good old sob but am feeling SO much better now. The nurses are absolutely lovely and the breast care nurse has been in encouraging me to TAKE THE DRUGS. (Why do I have this masochistic urge to be brave?).
Wow, the end of treatment is beginning to seem possible! Congrats Otter, well done AK, thanks for making me laugh Lesley, and everyone. I am now going to order me a lovely hospital meal and a big sleep.
Thinking of you all,
AK. Yes do get the solid shampoo bar from Lush it's just called New and I've been using for a week and the bit at the front that wasn't doing anything is starting to move. You only use it like a bar of soap lathers well and has a nice smell should last for months
Reflexology was really relaxing today so have booked a few more sessions as you get 6 free with Macmillan made me nearly go to sleep
Lesley hope Rads is going ok 😊😊😎😎 let me know what once says about water retention as I've still got puffy ankles and knees
Hope all you surgery girls are resting
I don't know what you are implying Miss AK!! 😇
I'm seeing the onc straight after my sunbed session in the morning - consenting for the asprin trial, but I will be taking the opportunity to ask about weight loss (or not!!) and water retention - arms and legs are still really bad.
how is Anadan doing? Must be getting close to her last one now??
love to you all
I've just had a brilliant time catching up on the thread after a busy few days at work and in pre-surgery assessment appointments. From hair growth to missing nipples and from finishing treatment to top tips for those of us still in the midst of the pesky process, it is fab what you've covered.
I have serious har envy: very little sign of any growth on my bonce, but I suppose I did have 8 goes on the chemo carousel and finished later than those of you boasting some new follicle action. It will be a wig for me for a while alas. Daft really but I hate the idea of being bald during surgery and recovery, but as my daughter said, they're not likely to be fazed in a specialist cancer hospital especially when they are the team who gave me the stuff that caused it to vanish in the first place!
Pre-surgical assessment was quite the ordeal as it really brought home the realities of a bilateral Mx and node clearance, but I am also keen to get on with it. I found out last night my creatinine is a bit raised which I hope won't derail anything. I spoke to my BCN as I was in a typical AK tizz about it after the call and she was reassuring. I am drinking loads of water in the hope it will come down by the time my bloods are taken again on Monday. I'll be the woman in the loo all day and night . . . again . . .
Hoping everyone is finding their next steps okay, especially those recovering from surgery, those about to undergo surgery, those breaking radiotherapy machines (I'm looking at you Miss Lesley) and those moving on to new stages of treatment like Otter. xx
Well done on finishing Otter 🎉🎉🎉
Try and not worry about seeing oncologist, enjoy this week knowing you've finished your chemo & radiotherapy. Don't worry about blubbing, it's a good release and if you can't do it now when can you? We've all had our blubbing days
Stay strong, you are an amazing lady who's been on a 🎢 of a journey
Thank you all I know we have all supported each other through this horrible journey but I know that I wouldn't have got through this without you all 🤗🤗🤗🤗😘😘😘😘
A good blub never did anyone any harm, and normally does you the world of good - we are here with the tissues!!
I don't think any of us really realise what we have been thru and will continue to go thru as we kick BC's arse! When you are 'in it' you just deal with it on a day to day basis..... but it's a bloody big deal!!
Sending hugs and loves and fresh mascara ..... or stick on lashes!!