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.
Don't worry Michelle you didn't worry me more, I was just impressed with how well you are doing. I have tried ot call my Onc Nurse but she is away on holiday until Monday, not sure who to call now. Its so weird because I think I am thinking about the pain so much and poking around that its making it worse, I need to chill a bit and stop thinking about it and see what happens. I am sure chemo and Tamoixfen don't help matters.
Feenix - meant to reply about the bras you got, at least you like the George one, its difficult isn't it. I still have to arrange to be fitted for my prosthetic but am waiting until I feel up to it as quite happy with the KK at the moment. When are you going to India? That is exciting and something nice to look forward to. We've still got to arrange a summer holiday, I am finding it hard to book things in advance, another of the gremlins I'm dealign with at the moment, almost don't want to jinx things. I have booked onto the Hope course but can't get on until Feb so hoping that will help with things. Also have the lymph clinic on Friday so might ask some questions there to.. .anyone who will listen!!
Oh well another day, but nice and sunny here, going to walk the dog this afternoon and see how the legs fair then!
Well done on your training Michelle. I’m going to sign up for the 12 week active programme available here... I need a kick start, esp after my fall. I’m travelling to India...I’ve been many times. I’ll be taking plenty of deet with me this time.
Kip ... those worry gremlins have a lot to answer for. Definitely phone your onc to put your mind at rest. My feet and knees have been acting up lately ... I put it down to age and letrozole. I’m guessing you still have the after affects of chemo plus youre on ‘the tablet’ now. Are you still using the Epsom salts ?
Clare ... hugs xx
Clare forgot to say no other ideas yet re a holiday in sun. A friend is in Hurghada atm as its easy to get there from here as we can fly from Bristol. Hurghada isn't that nice but hot in Feb.
Not sure if you saw my FB message on the post re dense breasts but anyway hope all goes well tomorrow! Everywhere else is expensive atm although it's only money! xxx
Ps Christine Rim had a diep at the Marsden.
Kip ... forgot to say that I sent off for 2 Asda bras and 2 Nicola Jane ... sent the NJ ones back and kept Asda ones. NJ bras didn’t have cotton pockets, which I prefer, but I didn’t like the style/material of one of them. Sizing was ok. I’d much prefer to see them in a shop esp at the price. I’ll probably try Amoena next. Hope you’re doing ok. Im going to try hooping again next week 😊
Michelle ... hope your training is going well.
Hello clare,. Oh what a shame for your daughter, hopefully she'll get to Wales and perhaps get given some special responsibilities on the activities which will help her feel involved. I hadnt realised your op was Monday either, that came round quickky didnt it. Your poor OH will feel torn between being there for you and yiur little girl but good your mum can be there for you. Ill be thinking of you and looking forward to hearung its all done. Hope you get a restful weekend.
Aw Clare you daughters disappointment must have been immense but hopefully things will turn out ok for her. Children heal well and bounce back quickly. The school sounds so good.
My goodness it’s your op Monday... I had the 16th in my mind. You’ve certainly had plenty of distraction although not what you would really have wanted. It’s good your mam is around and will be there on the Tuesday for you. Monday will feel like a long day for them all. I’ll certainly be thinking about you on Monday and look forward to hearing you are through it and recovering well.... and planning your shindig 💃🕺
sending love, hugs and positive vibes
Glad to have you back online Jean. Do take care- moving heavy furniture? Definitely sounds like you’ve over done things, Hope the exercises are helping.
Unfortunately the hospital rang my OH out of the blue this afternoon, A bone specialist decided to review my daughter’s x-ray images taken on Wednesday and he believes she has two ‘small and subtle’ fractures on her third and fourth metatarsals - (the long bones in the foot). No wonder she’s been in agony and can’t put any weight on it at all. She’ll be on crutches for a while. She’s so upset as it’s the school disco on Thursday and the following week her year are off on their long awaited week long residential to a farm in Wales. She’s literally been looking forward to it for two years!! We’ll let her go if the school and consultant say it’s safe for her to do so but she’s been in floods of tears tonight as she was looking forward to the hike by the sea activity more than anything else. Her teacher and the school office manager who are both accompanying the class have been so lovely and have been reassuring her they’ll let her join in with as many of the activities as she can and will find special things for her to do if it’s not possible, Hopefully she’ll be on the mend by then. She will be reviewed in the fracture clinic next Tuesday. Aaaghhh! My OH was supposed to be coming to the Marsden that day to see me and get an update. He can come with me to the theatre doors at 8.30am on Monday (14th) but there’s not much point hanging around as I’ll be in theatre till at least 6.30pm. I’ll then be in critical care so they advised him it would probably be better if he waited till the next day to see me. He’ll now be with our daughter in another hospital in the opposite direction! Thankfully my Mum is around so will come instead.
Im exhausted so off to bed, At least all this drama is taking my mind off worrying about my surgery!!
Take Care everyone.
ps I’m definitely going to need a party after all this!!