Hi [@Jassoscared]‍ how nice to see a photo of you :happy:in your profile pic. Sounds like you are doing well all things considered. 

Like you, I have the raised red blisters on my skin now and a very tender nipple and things are quite swollen but it is bearable. I started on the Anstrazole too, two days ago. How long did it take before you started to get the joint pain? I am dreading that it it happens. 

That is a brilliant start with the smart watch. I bet it is quite addictive to see how far you are doing and considering that you weren't feeling too great when you started with lymphodema etc that is a really positive amount of steps to have done and just getting into that mindset to now work on your fitness will really help your general frame of mind. I find exercise so good for mental health - I even tried a short run yesterday as I miss it so much but realised I need to be kind to myself and not overdo it so just getting out walking each day and will try and do little bits of running as I feel up to it. I've managed to lose a few pounds and have another half a stone to get rid of after the comfort eating weight gain while I waited those couple of months for a full diagnosis. Once again, have to stop beating myself up about something that really doesn't matter in the big scheme of things - I think it was more a sense of feeling like I had lost control of everything that was going on, so feeling more positive about making healthier food choices is helping my general mindset and helping me to nurture my body better.

I hope you continue to make good progress and thanks as always for your supportive messages xx

Hi Kiwirunner 

Many Thanks for your reply 

taken me time to get on here to reply.... when did it from email, system wanted me to log in, then when I did it said my email belonged to another user ...

VERY confusing....I thought I was fairly proficient with IT.

Had only 2 doses Letrozole so far and have a slightly out of body/ light headed feeling...but my BC nurse told me you need to stick with 1 for 8 weeks to give it a fair chance 

Wonder if anyone has experienced ? I’ve tried to research all these AI s as I’ve had 11 weeks to do so . Your breast sounds uncomfortable I’ve another 3 and half weeks to contemplate .....I was impressed by the Centre I attended for set up appointment Had a really lovely atmosphere and staff were lovely. 

I totally surprised myself by asking BCnurse about the fat grafting she’d mentioned earlier.....I had said I wasn’t interested but after my 2nd surgery have lost most of bottom of boob and also have a cleft under nipple .....I can imagine getting another mammogram will be difficult as my breasts are small anyway. I noticed they couldn’t find your cancer on mammogram.. I had 12 at a local centre and was actually told you don’t have cancer . THEN Doc did a quick exam followed by ultrasound....like your experience she was devastated to confirm I did have....

But I feel I’ve totally lost faith in mammograms now and I’ve been told that they cannot simply give me an ultrasound because of that experience . 

I haven’t become involved in many chats yet but I enjoy reading everyone’s post and have learned lots of practical information...Much better than any I’ve been given by most of the professionals 

Keep posting everyone....You are all such heroes xx

Jess

Hi Kiwirunner 

Sorry took so long to reply,only just popped on here again.

Been feeling extremely tired, seems to be getting worse, and still getting pains in feet ,legs the most ,and hands and few shooting pains in body. Think it's the letrazole, but I was told to give it 3 months by my oncologist  as it takes 3 months for your body to get used to it.So I'm going to see how I go,hopefully it will all settle down. As for your question of how long did it take for side effects of the letrazole to kick in ,it took  about 7/10 days  for me,  I was fine when first taking them. But we are all different and that may not be the case for everyone.  Glad you managed a run,I have bad knees ,kneecaps have worn away  had them drilled and shaved twice years ago now , and I had  a partial lateral relief operation,to try to move muscle over to support knees where back of kneecaps where worn away.So I can't run,my knees would give me to much pain, so walking it is . I cant seem to lose much weight  at the moment, I lost four pounds,and it went back on again. I fluctuate so much from day to day.  But I can't think to much about it,   it will come off when it is ready to. Like you I don't beat myself up about it,its not so important as it used to be,cancer makes you a different person, im not half as vane as I used to be,wouldn't leave the house with out makeup on lol,but think having to wear a face mask ,has stopped that,I don't bother wearing foundation, lipstick, I do however make my eyes up,as thats all you see of the face lol. But as soon as don't have to wear masks,the full face of makeup will be back  lol.

Hopefully some sort of normal  will continue, and no more lockdowns if everyone is sensible and sticks to the rules. Hope we both continue to improve with each day,and hope you get on OK with evetything and your medication doesn't cause you to many side effects. Speak soon .xx

Hi [@mrsmac77]‍ and [@Jassoscared]‍ thanks so much for your messages. Sorry I haven't been on here for a while. Work has been pretty busy since starting back.

Hope you are both doing ok. [@mrsmac77]‍ that sounds frustrating re your mammogram experience. Don't lose heart - I think the mix of imaging (mammograms and ultrasounds) gives a more rounded view for the radiologist. My cancer was spotted on the diagnostic mammogram (but not the screening one which is not as detailed) and then ultrasound. The issue was the biopsies not being conclusive but got there in the end. Keep having your annual checks and I hope you will have cancer in the rear view mirror from now. How are you getting on with the Letrozole now after a few more days on it?

[@Jassoscared]‍ sorry to hear you are feeling the side effects which don't sound much fun :-( Interesting to hear they kicked in 7 to 10 days later. I'm 10 days on and fine so far but who knows!! I think the joint pain can take about six weeks to kick in for my one. Hoping I don't get that. Sorry to hear you are also feeling tired. I've been waiting for it to kick in but haven't had any fatigue and it is 2.5 weeks since I finished radiotherapy. Skin is still pretty red and raised bumps and yesterday I started getting a really painful stabbing pain in my breast which is worse if I leans down to do something like put washing in the machine.. Too sore to sleep on that side but I guess if this is the worst I've had I'm pretty lucky really.

its good to hear you being kind to yourself. When you stop and think about all you have been through it makes sense to give yourself a break. I'm trying to take my own advice too and am feeling more positive. With the weather being so lovely it feels good to be out and enjoying so relaxing freedoms and simple pleasures.

@jassoscared I could totally relate to your makeup and masks comment!

Take care both of you and keep me posted on how you are doing. [@mrsmac77]‍ I hope radiotherapy goes well for you when it finally rolls around xx

Kiwirunner

Hi kiwirunner, I'm glad you are doing well and have been able to start back to work, that's great, and that you haven't had any fatigue and joints and muscle pain as it really is bad mine seems to be getting worse ,but I'm.still.hopimg it will subside in time  if not ill definitely have to speak to my oncologist as cant live like this for 8 years  in. paim and feeling drained .But hopefully it will settle.down. Today is the day my daughter usually pops down in the evening to go.for a walk, so if she does I.will grit.my teeth and carry on lol . It's such a lovely day, quite sunny, so will be good if it stays relatively warm. I'm looking forward to the sunny days ahead. Take care and dont overdue it where your work is concerned, be kind to yourself. Speak soon x.

[@Jassoscared]‍ so sorry to hear you are having a rough time of it with the fatigue and joint pains. That sounds tough and as you say not viable for 8 years. I know my oncologist said to give it 8 to 12 weeks for things to settle as it often improves. I have fingers crossed that happens for you. Did you get out for a walk with your daughter in the end? I hope it helps mentally as well as physically to still get out but the pain and fatigue sounds difficult. I think trying to keep moving is meant to help.

I've been feeling fine but today (11 days after starting the Anastrozole) I am feeling headachy and sort of spaced out. Don't feel myself and don't know if it is starting to kick in now or not. Just got to see what happens.

Had my hair cut and coloured today so that was a good boost to the spirits (although felt quite dizzy when I was there).

 Totally agree looking forward to sunnier days ahead.

Thinking of you and hoping it settles down for you xx

Hi Kiwirunner 

Yes I did manage to.go for a walk with my.daugghter, I pushed myself managed to do just over 5,000 steps yesterday  not great but tge best I've done in a long while.  

My brain is so forgetful, yesterday I started my car up as I havrnt used it for a while  I usualy run it fir 10 mins  evety so often.  Buy yesterday I forgot I'd left it running ,it was running for 35mins,and when I went to switch it off ,the temperate qauge was on red,I don't know how long it had been on red for. Was worrird I'd damaged the engine, so trird to start it ,and it wouldn't start.  The temperature qauge is stuck on high,I checked last night  at 10pm and the temperature qauge  was still stuck on high. I hot someone to check the coolent  and oil ,and all was OK there. So ive obviously done some damage ,hope I've not ruined the engine.  I'll check it soon ,and if it's still stuck  on high,I'll have to call ford's and see whst they say.  It will have to be picked up, as cant drive it like that, and if the temperature qauge is still showing stuck in high,I won't even try to start the engine,in case I do more damage.  I don't think I should of  trird to start it yesterday, but I wasn't thinking straight and just panicked.  

Sorry you having a few side effects ,hooe it does settle down.  I've only just realised the letrazole I had the first tine was different brand to the first one, the second lot of letrazole which I've nearly finished is Cipia brand.  The next lot I got from pharmacy is different  its Amarox brand.  I cant remember what the name of the brand was if my first  dose was, as ive heard different brands can give you different or worse side effects.  So now I'm going to compare the next  brand that I've got ( Amarox) with the brand I'm just about to finish Cipia and see if the Amazax brand is better or worse.  I didnt realise you can ask your gp to actually ask your pharmacy for a brand that you find more suitable for your body. 

I think unless it states what brand of letrazole you just get whatever they have in the pharmacy . So might be worth seeing what your given and if different like mine have been, compare how each brand makes you feel,and then ask for the brand that suits you.

Hope things improve for you  and side effects subside .let me know how you go with it all .x

Hi [@Jassoscared]‍ how awful for you re your car!! You poor thing. How is it today? It seemed strange that would happen from just running the car so I hope it just had its knickers in a twist and it is OK now? Not what you need at the moment at all.

I think that forgetfulness is just one of those awful side effects. I am always leaving the grill or the oven on and my family is saying I'll burn the house down at this rate! Even at work I forget things all the time and have to ask my team about things I have forgotten about. I don't think there is much we can do about it and we need to not give ourselves a hard time about it. I do hope for your sake though that the car is OK!!

Good on you for getting out with your daughter and doing the walk. Don't compare yourself with anyone else and just focus on keeping moving as it will help with the painful side effects. I' haven't had any of the joint pain (yet) so feel grateful as I know so many women are hit hard by it. It could still come so I am not taking anything for granted.

Last night was such a special evening for me. For years, I have had a regular social thing where a big group of us meet at a pub on a Weds night, do a 6-mile run and then go back to the pub for a drink. The bigger group has been meeting in smaller groups of six at the moment of course! Anyway, I haven't been able to run with friends since before my surgery back in Feb as had to take a break from running to recover, and then my skin was too sore from radiotherapy to do much more than walking. Anyway, last night three of my running friends came with me on a shorter 4-mile run (as I can't do my old distances yet!) and it was SO wonderful to be running across the fields with good friends, chatting and then having a glass of wine in the beer garden of the pub afterwards. It was the first time since all of this cancer stuff started that I felt I had a little piece of my old life back.

I don't know if keeping active has kept the fatigue and the joint pain at bay as I feel fine on that front, That might give you some hope to keep doing those steps and keeping active.

It could all change of course as I have only been on the drug for 12 days so far but I'm trying to think positively :-)

Fingers crossed for you on both the car front and for your symptoms settling down a bit xxx

Hi kiwirunner 

Thank you ,my car thermastat was still stuck.on high, so I called ford's who advised me to call Ford Assistance and if they couldn't get the car fixed to get them to take it to ford's,which is only up the road from me ,not far at all. So AA came out ( ford's Asdistance uses the AA) ,and car started up but temperature qauge was still stuck on high  so he disconnected the batery as said it might reboot it when connected again.  But it didn't,so he said can you drive it up to ford's, I said No I have not bern driving due to my illness ,and lymphedema swelling in my arm and joint pains,he only came in a AA van. So he said ill drive it up there for you and walk back its not that far,so I thanked him and off he went.

When he came back he looked a bit puffed out bless him,and said "gosh I didn't think it.was  as far as that ,it diesnt seem far in a van" .I said I know its further than you think ive left my car at ford's and walked back ,and then walked back to pick.it up before and ot does seem longer than you first think .Any way ford's had originally said it couldn't be looked at till this Friday 23rd, but I got a video virtual health check video  come through on my mobile, and it was the sensor gone on the thermastat gauge, and asked me to call to authorise the work £135.99. So I rung thrm  and said yes to autherise the work ,and the girl said, " your car is allready being looked at and Ford's are going to pay for it for you as a goodwill  warranty gesture", but I said" oh my goodness that is so kind of thrm, but my  warranty  run out March this year " she said " we know that but ford's is paying for it for you,  as a goodwill gesture ". I was so happy and grateful  I think its because I explained when I rung them how forgetful I'm becoming with all the cancer medications I'm taking, and that I felt so stupid on leaving it running for 35mins,  but I also think as I bought the car in 2019 and it was 2018 plate ,ut must of been on its way out,as if id of been stuck in traffic for 35mins it would of still overheated and temperature qauge would of done the same thing, and because I've hardly used the car last year and this ( thry could see by the mileage () that that's why they have decided to pay for it for me. But I am still extremely grateful, as they didn't have to do that.  

I walked up to Boots chemist yesterday to get my letrazole tablets and Adcall Calcium and vitamin D tablets ,And I struggled but I did it im.not sute when my car will be brought back, as I have to be in,so as soon as its back ,maybe today ,maybe tomorrow ill take myself off for a walk when it's back . Sounds like you had a wonderful time running with your four friends,that must of felt so good to be out there ,ecspecialy all going for a drink after as you used to,I can see how little things like thst give you happiness as not feeling well enough for such a long time ,although you try to stay positive it does make you feel a tad gloomy,

.

That's great you managrd 4mile run,bet you felt exzuberated  after. Well done.

Keep up the good work ,and I'll try to lol. I balloned up to 14st4  and this morning I was 13st 11,still a fatty boom boom lol,but I was pleases about that . 

Speak soon x

Hi kiwirunner 

Update on my car,it.was brought back this afternoon, so I decided to try to drive it round the block nesr me twice,all.seemed OK, so I then put it in my garage .I just realised I'd left something in my car and I go out to get it,I automatically looked at the temperature qauge  and it's stuck on high again,which it wasn't when I out it in my garage. So I can't see how ford's have fitted a new sensor, as I hadn't even driven it far.  So what turned out to be a happy day is now not one.  I had a lovely walk after I put my car in the garage, and was feeling happy.  Now I've got to call ford's again tomorrow and probably have to go through the same thing again and call ford's Asdistance out as well ,can't believe its gone  again if a new sensor was actually fitted ,as car did not even overheat  like it did last time.  Fed up .com.xx