Thanks Michelle, I had a bone scan and CT scan before chemo in June and was all clear, so hanging on to that too. I think it may be a problem with my hamstring tendon as I have the classic symptoms (from Dr Google anyway) so will keep that in my head for now. I have an appt with radiotherapy team on 5 Feb so will mention to them what I need to do next. I know I need to bite the bullet and get scanned probably for peace of mind. Sitting on a heating pad relieves it so perched on one now. I think you have so done the right thing by giving yourself something concrete to focus on, I definatley need to set some goals and face forwards. I am liking the sound of the mini egg diet.. well they say eggs are good for us don't they!! My health eating is going ok, slow progress but trying hard, difficult when not doing much exercise though but anything has to help I guess. I was wondering if a chocolate orange counted as one of my five a day!
Hi Michelle, it is a new look isn't it,, quite confusing to be honest.
You sound like you are doing so well, wonderful mileage under your belt ready for the big one and lovely that the Onc checked you over for peace of mind. Annoying about the scan, I've had a MUGA scan before with the injection and can understand why you felt emotional.. I always get emotional when back at hospital, it just opens old wounds I find. I'm still having the achy butt cheek and legs but resting it and now walking seems to help so, although I hate not doing stuff, I am going to rest up for a while and see what happens. If not I will have to brave the hospital for peace of mind I guess.
Hope everyone is doing ok and can find our threads on here!
The site has changed its look ... 🤔
Kip .. sounds as though your exercise dvd is very helpful. I do my exercises at least twice a day. When Im cooking I do a few in the kitchen, just a few extra stretches. Halve the distance you walk ... do things little and often and gradually build up. It does appear that joint/muscle twanging are the norm.My right hip and knee were giving me a bit gyp a couple of days ago but seem ok today. It might have been because I was out in the cold for some hours at the weekend.... it is my dodgy hip though from walking over Great Shunner fell many years ago. I’ve noticed my joints are slightly sore in general .. a combination of age, letrozole and cold weather. However my joints, in general, have been on the blink for some years.
Michelle and Clare ... how are you doing?
I may put my best foot forward and go out ...
No snow here either, lovely and bright though but cold..
I still do my exercises too, I have now got some more for lymphodema, but similar things and also the DVD so trying to do a few from them each day. The lymphodema ones are supposed to be done twice a day so I try to do them when I get up and before bed, they are quick and easy, very gentle and can be done sitting done. I've just done a couple of sections from the DVD too and some hooping. Still have this pain in my butt and back, its worrying me a lot but over the weekend it was ok without doing any walking then I went out for about 3 miles on Monday and its back again, might have to knock the walking on the head for while or cut down the distance and see what happens. Glad you ribs are improving, its slow progress all this isn't it.
Looking forward to warmer weather Kip. Apparently there’s been a bit of snow elsewhere in the area this evening .. none where I am but going to be a cold night. I’ve just been around the shops today, done a bit of housework and wii tennis and that’s it for exercise. Might go to Tai Chi on Friday .. the gentle stretching will be good. Just when I think my ribs are ok they twang just to keep me on my toes.... nearly there though. Pre fall I still had some tightness which felt better after exercising. I still do my post op exercises daily. Do you? How are you doing with your sleeve?
Hi Feenix, sounds like you had a nice day albeit a bit cold. Its definately a bit milder down here today, no frost this morning and nice and bright.. roll on the summer hey.
1/2 pound is better than nothing Kip. Sounds as though you’ve twanged something... so easily done. Hope it settles.
I had the thermals on yesterday ... had a nice train journey for a look out with OH. Only round the shops this morning.
I was up at 5 am but it was overcast here for seeing the blood moon. Saw one years ago when I was on nights.
Hope everyone has had a good weekend
Welcome Home Clare ... I saw you lovely photo on FB relaxing in your chair... you look great!
Optimisticmz - my arm is 9% bigger to so as you say its only minor but best to keep on top of it before it gets bigger. I am wearing my sleeve whilst at home working and its ok, keeps my arm warm this weather.
Feenix - Only lost 1/2 llb this week.. haven't been out walking much though as its been cold and my stiff butt was playing up.. I decided to rest it a bit and I think its helped. It feels like I have pulled a tendon (perhaps the hamstring looking online) and its pulling in my butt cheek, it doesn't hurt when resting but after walking or bending with straight legs.. boy it hurts. Ive done some hooping this morning and that doesn't hurt it though, so hoping the rest will be sending it on its way. Still having stiff kneews and ankles in the night though but that seems to be par for the course for some on Tamoxifen... its bearable though so Ill carry on in the hope it fades with time.
Did anyone see the blood moon last night? Beautiful pink glow this morning..
Michelle .. wise to take antibiotics with you , just in case. If I need anything A/b’s can be bought over the pharmacy counter. OH always has a BNF with him..medic... so he’d just get me the most appropriate. Hope you’ve got your 50% deet and travel socks.
Flying ... I was told to avoid having affected side on the aisle as people can knock you lots... and fall on you 😂. If you sit next to the window, with affected arm next to it, keep a cover over to keep arm warm. Do exercises regularly ... can’t remember how often but I’ll do them at least hourly. She told me the following.... 1. with your arm down, make a fist and then relax it, slowly, and repeat a number of times 2. as before, make a fist and flex your arm up, slowly... as though you’re doing bicep curls... then down and repeat. They can easily be done while sitting.. half hourly comes to mind !!?? You can easily do some of the BC exercises as well if you’re up and about... keep your shoulders loose and do some stretches. I’m usually up and down like a yo-yo, drink lots of water and keep off alcohol as it dehydrates. I guess these exercises apply to long train/car journeys ... anywhere you’re static for hours. Enjoy your fund raiser evening.
Kip .... how are you this evening? How’s the weight loss going? I think mine will be going up the way I’m dipping into the kitkats. I picked up a few more Asda bras for £6, total.
Clare .. see you’ve escaped CCU ... home will be beckoning soon.
Hi Kip. Your dominant arm could be up to 5% bigger than the other naturally. Mine is 9% so quite light. The manual lymphatic drainage involves encouraging the fluid to drain away. I can feel the fluid sitting at my elbow and I use kinesiology tape on this area. My therapist starts by clearing the lymph nodes in my neck then working on my arm and breast and finally moving down to my groin. It's quite an intense massage but I can feel the benefits straight away. Michele
Thanks so much for your advice Kip. I will get stroking! I would have done if from the wrist too which is how I do my moisturiser. Maybe I should start at the top with that too. Glad they've caught it early so hopefully you will not suffer too much x
Kip ... I do the stroking and always when I shower, same way for moisturising. I sometimes think my arm is slightly bigger than the other but was it that way before ... can’t remember 😂 I’m sure I’ll be having someone eyeballing it one day soon , just to make sure it’s just my normal flab but also to catch things early if it’s lymphoedema. My thick cording seems improved since I head dived out of the car and whacked my ribs/chest. Im wear a wrist splint at night now as thought I’d kicked off carpal tunnel syndrome falling on my hand !!! Seems to have helped. If it’s not one thing it’s another. It would seem Tamoxifen has a lot to answer for. Keep on with the exercises ... reminds me I need to do some.... and a bit of hooping.
Thanks Optimisticmz... that sounds interesting.. what does that involve? I don't have much swelling at the moment so hopefully things will stay that way.
DaisyDi - thanks for the message and glad you've been following my progress. Don't panic the lymphodema is nothing much. I had some cording after my ANC clearance which was why i was referred to the clinic, to get their advise. I have been massaging that and its pretty much gone. But the nurse took measurements of my arm and the affected side is on 8% bigger than the other, you can't really tell but she wanted to get on top of it before it got worse (if it does at all). Its not painful or anything. I have a sleeve to wear as and when and exercises to do. Best thing to do is to keep up the exercises everyday..I know after surgery it can be painful, but take it easy and do them religiously. She said exercise is the best thing. I have good movement as I have been doing them all the time. Gentle stroking starting at the top of you arm and stroking upwards, then moving down a little bit and stroking upwards and slowly work your way down to the wrist. Don't start at the wrist and work upwards (which is what I thought you had to do). You should do it gently just enough that the skin creases. Look after your arm, sun cream, wear gloves in the garden and washing up and if in doubt ask the nurses. I am sure you will be fine Daisy, its just another thing to worry about but, actually I'm glad they are sorting it now and keeping and eye on it. I have a friend who wears a sleeve every day and she is fine, compared to cancer and chemo a sleeve is nothing much.
Feenix - wow I didn't know you could get covers... how cool is that. Thankfully I only need to wear it when I exercise or go for a walk. I've been wearing it for a few hours today to see how it feels and actually its fine. I'll make sure I keep up the exercises and hopefully it will keep it at bay. At least its taken my mind off the aches and pains, the lymph nurse reckoned they are caused by the Tamoxifen!
Hi Kip. I have followed your story too. I am ahead of you as I had surgery October 2017. I have lymphoedema in my hand, arm and breast and was fitted with a sleeve in May 2018. I am currently receiving manual lymphatic drainage from a McMillan trained nurse (6 sessions being paid for by a charity) and find I benefit greatly from this. I also find kinesio tape useful. So far the swelling is all under control. If you would like to know more than just message me. Michele
Hi Kip. Good your cording has gone. Well done on your range of movement. Sorry about the lymphoedema though. Good to ‘catch it’ in its early stage. I like that you try to find something positive out of this. You can get bonny sleeve covers, some which will make it look as though you’ve got a full sleeve tattoo. Hope you join your OH and son doing yoga.
I was always worrying about my arm, and was quite obsessed at one time, as I was thinking I would be more prone to developing it having had cording and 3 surgeries, even though none of them was ANC. I did feel more at ease after the lymph nurse spoke to us just realising how manageable it is. If I develop it then I’ll just manage it. I’m pleased I now know the correct way to apply moisturiser and she did tell me exercises to do when on long haul.
Hi Kip I have been following your story and was so pleased for you when you finished your treatment. The pic of you and your children brough tears to my eyes and I now find myself teary eyed again having just read that you have lymphodema. I am a week post op anc and that was my worst nightmare although I dont have all my results yet so no treatment plan and things may get worse for me. I also had a 3rd reexcision to get one more clear margin but my journey has been going on since October. Did you have swelling to your arm? I am keen to do as much as I can to avoid lymphodema but dont really know what to do for the best. I am still sore and numb at the moment so finding exercises a bit difficult.
Hi Michelle, apparently when exercising that it when your blood and lymph is flowing more so its important to wear the sleeve to stop it building up. I would imagine that if you don't have lymphodema there its good to exercise to keep it flowing but the sleeve just helps stop a build up... I think!! She did say exercise is very good, especially yoga.
Just been to lymphodema clinic... good news is my cording is gone... bad news is.... I have mild lymphodema... now sporting a lovely support sleeve. I don't have to wear it all the time just when exercising, walking or housework/gardening. She wants to stop it progressing so has told me some more exercises to do and dos and don'ts and have to go back in 3 months. She was impressed with the movement i have though. Actually felt quite teary when I left the clinic, seems I always go in positive and come out with something else but in teh scheme of things.. a sleeve is nothing... and another positive... no bingo wing on that side when wearing it.. lovely toned arm! Might wear the spare on the other side...
Ahhh CDC.. so good to hear from you. Glad all went well, just a minor blip with the old BP... you don't like to take things the easy route though do you.... I'm sure you'll be out of that unit pretty sharpish... sending love
I’m envious of your weight loss too Kip ... as I’m sitting here with a cuppa and digestives. Dare not confess how many I’ve eaten ... 😈
Thanks Feenix - yes hoping for some bargains.. Good news about the hooping... me too.. I lost 3.5lbs last week so thats a plus.
I was thinking about Clare too, hope shes ok.
News such as you’ve had about your friend Kip, will always hit home. It’s a natural reaction. Being there for her, sending a virtual hug, a message of support is something you can do ... just being there. You’re right, there are many ladies living long lives with mets and there is plenty of support on here which she would find beneficial. There is also the younger persons group.
I don’t find this subject doom and gloom...it’s just how things are for some. We hope such things will bypass us..... we are definitely all different. Get yourself out shopping ... really good distraction and you might find a bargain 😊. I started hooping yesterday.
Hope things have gone ok for Clare.
Michelle .. hope physio helped
sunny here, washing out, have done wiifit, going for a walk and enjoying the weak rays while they are there.
Thanks for all the tips and kind words. Unfortunately yesterday I had some bad news which didn't help things, I have befriended a lady locally who has been going through treatment (we have never met but chat regularly on line), she is only 41 and had finished treatment but found out yesterday that she has lung mets. She did have some issues on scan before beginning treatment so it wasn't something out of the blue but still.. it really shocked me and didn't help with the demons at all. I am going to encourage her to get on this forum and I did some research yesterday and there are lots of chats going on with ladies in the same boat and I think it would be good for her. Haven't heard from her at all today and don't know how on earth to help apart from just be here I guess. Having to remind myself we are all different and it doesn't mean it will be me next... sorry for being so doom and gloom lately... perhaps thats another SE of the Tamoxifen.. it does wreck your hormones... going shopping later.. that will help
Just wanted to send you a big hug. We all have those demons, but just think what our bodies have been through last year. How could we not be having some side effects from it all? Everyone is different so try not to worry that others aren't experiencing the same symptoms. Try to focus on how far you have come. I get scared too, but then I think, I have had so much treatment, surely those cancer cells don't stand a chance!!! Being back at work helps too, as there are hours at a time that I am focusing on my work.
Love Jane xxx
That looks really good Kip. It’ll be the same one here. There’ll probably one where you are Michelle. It’ll compliment the moving forward course. I’ll be putting my name forward ... do everything that’s available. My bcn said that ladies who have attended found it very beneficial.
Just saw your post Michelle....takes me so long to get a message on here using one finger typing on an iPad 😂 Just brought to mind reading an article about craftfulness... some find it more beneficial as you’re doing/making things and can be in a group. I’ve got a few small projects to do, such as knit a hat ( probably get it done for next winter !! ), finish a tapestry, do tie dyeing etc. Hope the physio works for your hip. Yikes... not long before you’re trekking. Staying with family is definitely different ...you experience all the power and water cuts 😂 I’ve travelled with them in India, we are in the south, and it’s really interesting.
Kip .. the Hope course sounds as though it will be very good. I’ll be seeing one of the follow on team in the next couple of weeks for my pre yoga/referral to activities/gym programme so I’ll ask her about it. I have tried an free app called Headspace. You may find it helpful. It’s bloody awful when the demons hit but you’re right that’s it’s par for the course. As with everything time will improve things but being proactive about such things is a positive thing as a little help and cushioning along the way can only be a good thing. Doing courses, using apps, talking on here, accessing counselling, being active, working, quiet time .... so many things that can help. And accepting there will be those ‘off’ days along the way. We are here for you Kip. We understand.
sending a big hug xx
Kip ... worries are heightened when focussed on the subject. I became obsessed looking at arm all the time, having weird sensations, watching size etc. The moving forward course helped me to re focus as I realised that things can be managed if they develop.. a little bit of info/reassurance is good. Then I had a fall and back to square one but improving on the mental side of things. My BCN told me about the Hope course, so I might do that later. Apparently it is different to the Moving Forward course in that it has a facilitator but no speakers attending. It sounds more participant led and is for men and women who have had a cancer diagnosis. Is that the same Hope course you are going to do? Although I have a proper foob I do tend to wear my softie but I do go flat a lot of the time.
I’ll be travelling in about 5 weeks. It’s different to going on a package holiday as I stay with family. Plus I just take hand luggage .. travel light which is good. It’s certainly an interesting place to visit though. Keep it on your list Michelle. It’ll be good to catch up with everyone. I’m wondering if they’ll be taken aback if I wander around ‘flat’ 😳 I’ll just be taking a softie with me ... it’s easy to take out and shove in a pocket if need be...bit harder with the silicon one as it’s not so squashable and have to take care more care with it 😂
I’ve never been one to book anything in advance. Much prefer doing it adhoc. Our flights were just booked a week ago I think. Here’s hoping you get answers to your questions at your lymph clinic appointment.
How long is it before you travel Michelle?
Not so sunny here but need to get up and move.
Enjoy your walk in the sun Kip ... hope not so achey afterwards.