Hi all ... just got the internet back on. It had gone walkabout with the phone line from Tuesday...openreach just got round to fixing the problem. Just having a quick read through posts.
Kip ... exercises sound good...pleased you’re doing ok on Tamoxifen although you still have your aches and pains. Not too long until your appointment and get your arm looked at. Great your friend is pleased with her diep. Research says that women who have delayed recon appreciate it a bit more (!?). You’ll have a fab time in York. Keep on hooping and resisting the biscuits...if you can. I’ve nearly finished the Stollen thank goodness.
Michelle ... the moving forward course is worth doing.. you’ll get something from it I’m sure although I realise it’s not for everyone. Six of us still meet up at least once a month.. coffee/lunch/natter.... it’s good support and we know what bc diagnosis is like plus going through treatment. I don’t know about telling people about bc but everyone in the cafe yesterday would known all about it 😂 I’ve seen the Bosh book but not delved into it. I’m definitely doing lists ... on a daily basis...keeps me focussed and it’s good to plan, even just the shopping.
Clare ... hope your daughter is improving and pain is controlled. You’ve certainly got something to plan (once recovered) and to look forward to in August ... what a lovely thought and gesture.
Afternoon tea ... mmmm.... very nice. Not long to go ... op Wednesday I think !!?? Time is flying but it will be good to see you through it and recovering.
Im doing ok... much better mood than last week. Ribs much improved....twangs a bit when lying flat ... and I really should refrain from moving heavy furniture around. Keep getting a burning sensation in my hand... think it’s carpal tunnel syndrome. It’s a side effect of letrozole plus I already have mild nerve compression in that wrist from nerve conduction studies. I’m doing dedicated exercises as I don’t want it to progress. I had severe carpal tunnel syndrome in my other wrist which needed surgery...instant relief though. I think I set it off this time by over stretching my arm when doing cording massage..unless it’s a coincidence. OH off to see family later this month and I’m going over next month ... my first long haul flight for nearly one and a half years.
Have a good night
Hi, I want a party too... look what you've started Clare We all deserve a party I think... Michelle.. a summer party sounds fab.. probably be in my garden too but something to think about.
Your poor little one Clare, makes my aches and pains fade into the distance just thinking about it. No doubt she'll get lots of attention at school and make her feel special, I remember always wanting a go on crutches when I was little.. am sure I wouldn't once I had them though. I always wanted to have a plastercast too... crazy child.
Had another restless night with the achy joints... tried to explain exactly how they feel to my OH this morning but he couldn't understand, its difficult to explain. He did say that he wishes he could experience it for 10 minutes to fully understand... only 10 minutes mind!! I think I need to sleep standing up as its so much better then... not sure that would work though
CDC - just wanted to tell you, just had a message from my friend, she had her tummy DIEP procedure yesterday and is sooo happy with the results already.... feeling bit tired and woozy from morphine and a little bit sore but otherwise she's fine and so happy to have a flat tummy and 2 boobies again!
Oh dear Clare, your poor girl, hope she's feeling ok today and not in too much pain. Your party celebration sounds like a fabulous idea. My OH and I have been invited to a wedding in York in February so decided to take up the offer and go for a couple of days (just the two of us), so found us a nice hotel and really looking forward to just spending some time away from everything.
Going back to Michelle's post about what to say to people... I just bumped into a lady in our village, she's very nice etc but always comes up with a sheepish look and says "well how are you....is everything (long pause)...ok? So I always say "oh yes everything fine" and then she goes merrily on her way.. when I really want to say "yes I feel ok, I ache from head to toe, have hot sweats that wake me up everynight and spend the good part of the day wondering will it come back" but you don't say those things do you... you just smile, and let them go on their way. Perhaps next time I will say it... just for the look on her face! She also always says "love your hair bet your pleased its grown now"... also want to say "no not really much preferred being a mousy blonde with locks passed my shoulders instead of a grey Philip Schofield lookalike" but I don't. Bless em!!!
Enough of my moaning.... its day 4 of my healthy eating plan and going ok, did some more hula hooping this morning, didn't help with the hot flush I had at the same time but hey ho. Determined to shed some of this blubber and feel a bit fitter ready for the summer.. oh and have to squeeze into something suitable for a wedding in Feb... eek!!
Hi Michelle, don't worry I've been there and done that too! I think we probably all have. I was in our local bakers with a headscarf on and could see the ladies looking at me (side glances you get the picture) and I just blurted out .." oh I've got BC" and whipped off my scarf to reveal a bald head. Don't know why i did it, just had to do something, they didn't know what to say.. well one did. she then told me how her sister in law had died from it!! Cheered me up no end... I wouldn't worry, we never know whats going on in other peoples lives, who knows he may know someone who has just been diagnosed and was thinking... "wow she's been there and look at her now"... there's no guide book of how do deal with all of this is there.
Glad you got the Karate Kid reference too... always makes me smile... just need to catch a fly with chopsticks now.
CDC - how are you? Have you had the appt with the hosptial yet? My friend is having her tummy diep right now... she was very excited last night!!
I did write a message to you but it's disappeared! I also tried to PM you but also to no avail. By all means you can PM me. I seem to be having probs with computer so you may get this twice!!
Good to hear everyone is starting to make inroads into the next stages of this journey, whether training for a trek, preparing for next surgery or making those lists... it all matters...its the next step forward! I've started a healthy eating plan this week (well yesterday actually)... trying not to listen to the biscuit tin calling me. I really need to shift this extra weight, can't be helping my achy joints. I have been using the hopsital exercise DVD doing a couple of sections a day, its really quite good, very gentle and now I have my pilates ball I can do all the exercises. Its basically just for shoulders, chest and neck, to loosen, stretch and release the tightness, but seems to help. Some of the exercisees are similar to the ones I was given after surgery, like walking the finger tips up the wall but they have been pushed further by facing the wall with the pilates ball under your outstretched palm and then you roll the ball up so that it moves down your arm and you do this up and also out to the side at an angle and it really gives it another dimesion... sorry not explained very well but seems to help. Lots of other little exercises to do which only take a few minutes at a time. I have even managed to hula hoop and do some arm exercises at the same time! One is called "painting the wall" and reminds me of the film Karate Kid (not sure any of you remember it)... where you extend your arm out in front and basically move it like you are painting up and down, flexing the hands... really helps my tight forearm!
Feenix you were right I have my lyphomdeam appt on 18th Jan so still another 10 days, will be glad for an expert to take a look and tell we whats what. Its still sore when I reach forward and I get a funny twanging feeling around my elbow, although I don't this its very swollen. How are you doing? Hows the ribs?
I also managed to get the same brand of Tamoxifen this month so will see if that helps sticking to the same one...so far its not too bad, just the aches (not sure if its that though) and hot sweats during the night but am sleeping pretty well I think, well not any worse than before anyway.
Hope everyone is getting back into the swing after xmas.
Thanks Clare. Sounds like you’ve found a good group to get info and support about Diep. I’m in the Flat friends closed group which I find really supportive, informative and I know Im not alone in my attitude. There was an interesting interview on woman’s hour today about mastectomy although I didn’t catch the beginning. I might have to catch up with it. I do hope you got as much info as you could at your appointment today and feel informed and confident with your team.
Kip... hope you’re doing ok. You’ve still got a wait for your appointment with lymph nurse if I remember correctly. Hope work is going ok.
Michelle .. hope your training is going ok. How are you doing in general ... just came to mind you were having counselling. If you’ve continued with it I do hope it is helping. Keep on walking, running and anything else you can do to help as well.
Weather has been rubbish today so I’ve been rather lazy, apart from being round the shops.... I’ve done some ironing !!! 😂 .... Lists rule ok. Got myself a diary with a yearly planner and large enough (a5) to write my lists 😊
Belated birthday greetings Jean! I think the lists and daily activities are a really good idea. It has helped me to have a bit of a routine when I’ve felt low. I’d love to get in to Tai Chi at some point too, Sorry you’re side is still sore- I can imagine you must have to be extremely supple for some of the yoga moves on the DVD. Not sure I could have attempted some of the positions I’ve heard of even before surgery!
Michelle fantastic you managed 7 miles and so glad you found someone to Chat with, Its so wonderful that you’re raising money too.
Linda- I spent a day in Cairo on a mini-cruise from Cyprus some years ago and absolutely loved it but we did have to have an armed guard at one point due to issues with security, Have you had any other ideas of places to go? I’m going to be looking for inspiration as I also intend. To have an amazing holiday once all the treatment is over.
Kip how are you getting on? Hope you’ve had a good weekend.
I came across a closed group for people on Facebook who have had or are going to have DIEP surgery. I’m now feeling slightly less nervous having read their experiences. Also feel better informed about what to expect. Hopefully my apppont,ent with the surgeon tomorrow will also help.
Sending best wishes to everyone sxx
Linda .. my niece has just been to Egypt and loved it. I was there 1990 ... I’d always wanted to go.
Michelle .. I use the wii fit yoga as a warm up. My side isn’t 100% yet but the stretching helps... at the same time as making it more sore 😂. We were looking at some yoga dvds my OH got when he did some training in India ... I’d have to be uber flexible to do some of the moves. The follow on team here have various things on offer and there’s weekly yoga which I may consider. Pilates is supposed to be good too. Going to get back to tai chi at some point. My mood has improved but think I’m still on a low level at times hence I’m making to do lists on a daily basis and going to incorporate different activities eg. House stuff, me stuff, creative stuff, OH stuff etc. I may then be more focussed, motivated, productive and balanced. Sometimes I just can’t be bothered and I know it’s a mental thing. Maybe I’m in hibernation mode !! Sounds as though you’re doing good...getting out with your trekking group and doing 7 miles ... well done. Good to be able to chat about both your experiences with the lady trekker.
Kip .. hows the exercise dvd going ?
Clare ... hope your appointment goes ok tomorrow.
CDC 12 down 8 to go! Not sure where we will go yet. Was thinking of Hurghada Egypt but there was a bomb at the pyramids although not been to the pyramids but did think about going to the pyramids this time. We are thinking about a night away to celebrate the end of treatment first. Am thinking about you!
I mentioned I was thinking about an op in May on my other boob last week at my rad's review and they said to ask re a mammogram in October a year after my op as you have to leave it a while after surgery. I last had a mammogram in March on my good boob so that will be a year and 7 months from diagnosis. The surgeon said he would see me in April which is actually my wedding anniversary to discuss the op for symmetry as am lopsided at the mo.
Hope that Pilates ball does the trick Kip. Await your feedback.....
Ive been out for a walk this morning ... this afternoon will be wii fit. OH would like a rowing machine ... where to put it though. I’ve seen some wood ones online, which use water for the resistance. A bit expensive but stored upright and look like a contemporary piece of furniture.
Hope you all have a good day.
Kip ... being back to a work routine must be satisfying. I’ve yet to get a diary for this year but still have last years planner ... it certainly tells a story. Hope you’re ploughing your way through the chocolate at a steady pace. Your exercise dvd sounds really good and I hope you get back to swimming...I just keep on thinking about it. I’ve got some exercise bands but haven’t used them much although physio said they would be good for stretching. I may try a 5 week exercise prog through nhs site .. picked it up looking through Becca app. It’s on the same site as the couch to 5k. I’ll have to wait until my ribs are pain free and by that time I’ll probably have forgotten all about it 😂 . Hope your chemo se’s keep on improving... Michelle and Clare also.
Clare ... I was super anxious before my last op but more about decision making. I really didn’t want a mx as I’d got used to my ever shrinking boob, and it was ‘another surgery’. It’s natural to be anxious before major surgery, or any surgery. It’s the mental preparation, knowing there’s going to be a ‘change’ which will need to be embraced and a recovery period to get through. Although the length of your surgery must be daunting there are so many women who have gone through Diep and been ok .. that is so positive... keep that in mind. Your team will be very experienced doing Diep’s... they will reassure you on Monday and answer your questions. How are your pre op preparations going? Sounds good to have a couple of days away with your OH.
Michelle ... my goodness .. next month is your trek !! I have to take my hat off to you...I can only get up to walking pace. Mind you I’ve never been a runner. And you’ve signed up for more !!! They’ll keep you going. Keep on believing your own hype but take it easy if/when you have an off day ... go with the flow. My birthday was yesterday..chill out day. I never feel I have to do ‘anything or something’ and there’s so many other days in the year to chose from...warmer days 😂 Today is the day to start off on the right foot for me... definitely into lists again and will get a 2019 diary/ planner tomorrow. Gosh...I was doing that this time last year and it all went out of the window .. hey ho. Hope you get some good 💤
Jane .. pleased you are doing so good.... getting near to ringing that bell 🔔 🔔 🔔
Ive felt very tired and grumpy the past few days. Decided to take myself in hand .... started doing half hour wii fit today .. the yoga part was good for stretching.. and I have had a walk. My ribs are twanging but I need to keep on going. My mood has improved today probably because I don’t feel so cream crackered and I haven’t nodded off ... results. Hoping I can keep motivated.
Deciding whether to do long haul flight this month or next ... 🤔
I was told having an Epsom salt soak is good for crampy legs !?
Its been really chilly today. Hoping it’s going to be a bit ‘warmer’ tomorrow.
CDC - thats really interesting because I find if I haven't done too much walking my legs, feet and knees don't suffer at nighttimes as much.. but otherwise they are so restless and achey, my feet sometimes feel like I've walked 40,0000 steps and I haven't done a single one.. perhaps it is neuropathy from the chemo... whatever it is I hope it slings its hook soon!!
Hi Michelle and Kip
Thank you for your good wishes. Tenth radiotherapy today so two thirds done! I am counting down the days to that bell!
Wow Jane.. thats great that the nurse will come to your work for you... wonderful! Glad to hear you are fairing well too, its good to be back at work isn't it. After I finished my Rads (19th Dec) I haven't really found I have been too tired, not got sore either although I do have a couple of red patches but they don't hurt.
Michelle - glad the Tamoxifen is suiting you fairly well. Those sweats are awful though aren't they. I'm not convinced its the Tamox only causing my aches as it seems to be a SE of the docetaxol chemo for some people too. Perhaps its a bit of both. Last night I had restless right leg all night long and achy feet.. perhaps its some sort of neuropathy thing.. who knows.. just hope it passes. I have been looking up swimming timetables to see if I can get myself motivated to go swimming, thinkign I need to stretch all these muscles. After my work out yesterday with the DVD I am a bit stiff today, so still stretching.
I am doing well, thank you! I have just had nine of my fifteen radiotherapy sessions. No ill effects still. I had tried to bring it forward as I wanted to be finished by the time I went back to work today. However, it was not too bad having the sessions over the Christmas period. We had the children home from Uni and family down, so I had plenty of offers of lifts, and we combined it with a nice coffee after!
Work was so good today. I was absolutely thrilled to get back to it. I have been off from 26th June. I am doing mornings only til the radiotherapy has finished ( 10th January)The radiotherapy nurse told me the tiredness may kick in about nine days after my last radiotherapy. I hope not! I am away for a friend's 50th, then the following week I will be back to work full-time.
I will be having three weekly Herceptin injections til June but they are happy to come into work to do that, then sit in the waiting room for two hours to make sure there are no side effects. ( I am a dentist).
Best wishes to all of you
Morning all, well back at the desk and getting on with work. Funny how you soon get back into the stride.
CDC - I can well imagine the worries are creeping in for your operation but you'll get there and this is the final piece of the jigsaw and you can heal up and move forward knowing you've done all you can. Good to hear you have the weight gain for you operation too, I have plenty around my hips, tummy, bottom well everywhere really and am going to try to take that into control now the new year is here... although I still have a shed load of chocolate to get through too.
Fab you are getting on well with Tamoxifen too, just the knees. It will be intersting to see if it improves when you are off them for a couple of weeks.. let me know. My stiff limbs are still a nuisance but slightly less so now, just the lower back which aches (see below for possible reason though) and I get the sweating during the night.
I finally got to watch and participate in the Breast Exercise DVD given to me by my hospital. Its really quite good, it was made by Ipswich Hospital Macmillan unit and is aimed at getting movement and flexibiiity back. I did most of it today, its very slow to begin with and you build up as you go but had some great exercises that really feel like they will get my arms and shoulders moving. Made me realise that my hip and back pain is probably down to posture as they point out that once you have had breast surgery you naturally arch forward to protect that area and you shoulders dip and hunch causing stiffness. I need to work on the video and to buy a small pilates ball as some exercises use those. SOme use the resistance bands and that seems like a good thing too.
Michelle - I like your thinking that if you say your fine enough you may just believe it.. Im trying that too, not always successfully and I too spend times awake with wandering mind. I would love a whole nights sleep for once, but hot sweats and aches don't allow that any more. But mustn't moan as on the whole I sleep ok.
Pleased you’re getting to the end of your hospital treatment Linda. I started out in March also. Have found the support to be exceptional. Enjoy your break away in the sun ...all the best for 2019.
I second the rollercoaster year. Good riddens. Thanks to all for helping me through from March until now. Hopefully my treatment will end on 16th January. I am hoping to go away to get some sun soon. Happy new year.xx
Kip ... I’ve got everything crossed for more ups.
Jane ... how are you doing? I think you’re having radiotherapy? 2018 was certainly a rollercoaster, physically as well as psychologically. Wishing you all the best for 2019.
I put my good foot forward this morning and got out for a walk ... I know I need to do more, help my endorphins and increase my feel good factor. I’m making a list already, looking at things I need to do, things I’d like to do/try but nothing is ‘resolute’ as I know being flexible is the key ... go with the flow.
I think about the ladies who are just being diagnosed, having to make difficult decisions, going through treatment and know that there is always support on here.
Happy New Year, Kip, and all you lovely ladies. You have shared my highs, when I have had good path reports, and my lows, like my trauma over my mastectomy, and have got me through this. I have never met any of you, but our shared experiences make me feel like you are friends! I wish you all well. Jane xx
Hi all, just wanted to wish you all a Happy New Year!! Heres to a muxh better 2019 for us all. I would also like to say a big thanks to uou all foe being there feom the early dsys, through surgery, chemo and every up and down... You are all truly amazing...
Fingers crossed for more ups than downs this year