'Deferred Maintenance Club' for Bahons, Dipstick and Lily???

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41

Just bumping this up as haven’t heard from anyone in a while.

How are you doing Chris, are you moving your arm ok? I hope its not too uncomfortable. Are you managing to get out and about with Lottie for her daily walk? You must miss that if you haven’t got the strength.

Lily is your soreness from rads beginning to reduce now, are you looking forward to getting back to work and how are the wedding arrangements coming along?

Bahons, hope all is well for you how is your lymphoedema? Has the swelling gone down in your legs ok now?

I am pleased to say that when I was weighed today before Herceptin I have dropped 2 kilos, so am now 1 kilo less than before I started chemo. Why don’t my clothes fit though? I know I am still struggling to get into trousers because I still have fluidy legs which are slowly getting better so I suppose that is it.

How is the weather treating you all, do you still have the chilly frosty weather Bahons? Our washing machine finally worked today when OH defrosted it, a wash was desperately overdue so thank goodness he did. Of course once its all inside the house it will be ok, its just that for the moment its outside the mobile home on the decking.

Take care to everyone

P xxxx

42

Hi,
Peacock sorry if I have made you anxious about a rads burn now. I had 2 zaps each time, one from low on the right of me and the other on my left, much closer to my body. Both lasted about 40 -50 seconds each time. It does depend on how deep the tumour was and the extent of it from what I have been told. Also if any areas other than the breast are involved those are extra ones. I was sent 4 booklets by the rads hospital and it says’ the number of treatments you receive will depend on the size and type of tumour you have.’ I phoned the hospital today and they said I had reached the stage that it was better off being covered and got sent to my surgery for special dressings. Will post the rest on my other rads thread. Hope you are one of the ones it does not affect too much. I am unable to wear a bra and was told to get tight vest like tops, which are much more comfy. good luck
Chris how are you getting on? Hope to hear from you soon. How are the exercises going, with rads coming up, you need good movement so keep up with them if you can. They put your arm behind you whether it is comfy or agony as otherwise it gets in the way of the rays, so much easier if you can move freely. easier said than done I know! Good luck with that.
Bahons how are the exercise classes going? I am still using my exercise bike but have done far too little, or should I say none over Christmas. Must get back to it.
Lily x

43

Hi all

yes i am doing my exercises but still feel arm is stiffening up, I must work harder!!! Isnt it the wierdest feeling my under arm and flesh on underside of right arm is numbish, a really strange feeling. I think it is heavier with fluid ? there seems to be more 'hanging flesh’than the other side. Does the numb feeling wear off or is it damage to the nerves etc.
I have my friend staying with me for the past week till next wed. so we have managed to get Lottie out for some really good walks. I plan on doing another one tomorrow as today I have been really lazy and done nothing. Six more days and I wont have to wear the white stockings they give you!"!!, at least they only go to my knees.
When can we do ironing, hoovering etc, is it after 2 weeks?? Are my wound coverings likely to come off for good next wed when I see the surgeon? Will I ever be likely to be able to play badminton or similar sports due to having complete node clearance. What about work outs at the gym, rowing, light weights etc.
I think I have lost most of the fluid in my lower legs now as i can zip my boots up easily, a week ago it nearly pinched my skin, in fact I left the last inch of zip open.
Peacock glad your washing machine is sorted out or you would have to tread them in the bath!! Drying is the only problem!!!
Well done with the weight loss, it makes you feel better about yourself doesnt it.
I dont know Lily, nothing is straight foreward is it!!! Has your skin actually broken with rads or just very tender and sore?? Are you able to put any oil/cream on it now? Sorry if you have already answered this, I darent look back as I usually loose everything!!

bye for now,
Chris xxx

44

Hi Chris, nice to hear all is well. I thought I’d come back quickly as I am still quite newish from the op + lymph clearance. Yes that feeling is weird, under the arm and underside of the arm numb, and do you find when you put your arm down by your side, the area under your armpit/underarm feels huge, like it is really swollen but isn’t? I still have that numb feeling, although I do think it is slowly getting better. I’ve been using my arm as much as normal as I can, but haven’t done any lifting. I think ironing might be ok now for you, but I think you shouldn’t get back to hooovering so quickly, My arm still feels stiff at times though, and the stretching for the rads is pretty uncomfortable.

Anyway, off I go for now, take care and enjoy your walk tomorrow.

P xx

45

Hi all

Hope you are all feeling less fried/stiff/numb than you were a few days ago.

Do take it easy with the housework, everyone - there’s nothing that needs doing in a house that is worth stuffing your arm up for!

Lily, it’s while since I had rads and I didn’t really burn, but I did find a hot water bottle filled with chilled water helped to cool down a few hotspots that I had.

We’ve had more snow and ice - can’t believe it, so far south and after last winter, which was a real pussycat. We are running out of wood at the moment, so OH is imposing rationing!

Glad to hear that your washing m/c was OK after all, Peacock - it would have been a real downer to have to replace it.

Chris, glad to hear you are getting out and about in the fresh air with Lottie - it makes such a difference, doesn’t it?

We have just waved off our last visitor for the Xmas period. She was a lymphoedema physio in Australia before she retired, so I have just had three days of tip-top treatment in my own home! I have a Class I low level laser, but I wasn’t using it to best effect, but she has treated me with it and now I know how to use it much more efficiently. My really bad arm (the left) has gone down heaps (a little known scientific measurement somewhere between ‘quite a bit’ and ‘tons’) in about 72 hours - I’m thrilled.

The exercise class is great fun. I really enjoy the cycling and even with lymphoedema in both arms I’ve been able to use the rowing machine with no load for a few minutes, which is giving me confidence. The instructress never lets us do anything for more than a couple of minutes, so our arms don’t get tired. We do one exercise for the arms for 2 mins, say, and then something for the legs for two mins, then a short break, then a different exercise for the arms. I’m really enjoying it and it seems to be very good for relaxing my shoulders. Maybe they will have some near you, Peacock.

Bye for now and take it easy!

X

S

46

Hi everyone
Bahons I am so jealous, your class sounds fab and just what I need. I am definitely putting weight on continually but not sure whether it is just over eating or help from the hormone tablets. I want to go swimming but the burn is holding me back for a bit longer. It is ok now just brown, a bit smelly and peeling. The space age gel dressings I have are brilliant. I can’t believe how cool they stay. Over a few days they harden and I just chop the sides off them. They promote healing so you have to try to keep them on as long as poss. I don’t think housework should even enter the argument, unless forced to or run out of everything you need. woops guess I just let out I am not a tidy person. I am really pleased that you have had success with the lymph and think others might be interested in that
Peacock, how are you getting on. I imagine the journey is the worst part and probably making you feel tired. Is your skin holding up? My scar went very red and then gave up and calmed down. Hoping to hear it is going well for you
Dipstick - how are you getting on with your convalescence? Are you getting more movement back in your arm now and did having the dreaded drains out go ok? Mine didn’t hurt but I was terribly anxious thinking that they would. I only had the white socks for the operation and next day, but they are good at getting the swelling out of your legs so I brought mine home. I have a slightly numb area but it does improve a lot. it felt really weird to use a roll on deodorant at first and I used to do it non stop expecting to feel it!!!
I mnow have a back to work date, which is scary and exciting - not sure which feeling is strongest. I am going back on a Thursday so I just do 2 days and then get the weekend. I am alo timing it to have just a few weeks before half term. Apart from that just hoping I don’t cry!
take care
Lily x

47

Hi all,
went to the feel good afternoon 2=4, very good and came back with my goodies.
Saw my surgeon at 430 and the good news is that he got clear margins. He likes to get 1mm clear all round but managed to get 10mm minimum with my lump. Of the 28 nodes removed only the first one in the ladder was affected, 27 clear. I ended up crying!!! Didnt realise how much I was holding in. Messed up my new make up!!! I went in thinking the worst and caame out with the best. He drained about 60mils from my side but I didnt feel anything, still too numb. I have to go back on monday for the nurse to check the op site, check fluid probs etc. I will get my rads appt in approx 4 weeks and will be having 15 rads. Hopefully in 2 months I should be finished with everything, oh except for 5 years of Arimidex so I need to do some homework on that.
Bahons, the laser sounds very good. Where do you get them from?. I’m really pleased that it has been beneficial to you.
Peacock I did some ironing yesterday!!! Couldnt put it off any longer, although some was done a bit slower with my left arm!. Hope you are continually improving/ I will keep stretching for the rads to stop it being too painful.
Lily great news about work, frightening, exciting, all at once! Yes, it will be a very emotional time, make sure you take a hankie!!!. Are you on Arimidex, have you had any side effects??

take care all,
early nite for me, it has been a long day.
Chris xxx

48

Hi all

Chris - I’m so glad that you had good results from the onc - what a boost - I’m so pleased for you. Hope you felt up to celebrating! And do go easy with the ironing - it’ll keep! I’ve taken Arimidex in the past, btw, and found it much less unpleasant than Tamoxifen.

My laser is hand-held Class I laser. I bought it mail order from Australia (where I’d already been to have my lymphoedema treated in the past). It’s made by a company called Riancorp and I use it mainly on my worst arm (it’s rechargeable). It’s also good for scar tissue (I’ve plenty of that) tennis elbow, chilblains, sports injuries, etc. Lasers are used in the private sector in the UK, but the NHS has never shown much interest in them.

Lily - I do feel for you - I love swimming, too, but I imagine that chlorine and a rads burn wouldn’t be a good mix! The exercise class is great and I’m amazed that so few ladies here have taken advantage of it. I’d never been in a gym before in my life and I’ve got two dodgy arms as you know, but it’s such good fun - no pressure of any kind at all - and I’ve discovered I can still do things - more things than I would have thought possible.

Yes, going back to work will be quite an experience, Lily. Starting on a Thursday sounds like excellent planning as well as having a long break soon with half term.

Yes, roll-on deodorants do feel funny now, don’t they? One tiny plus point of having had surgery to both axillas has been the destruction of my sweat glands and although I still use deodorant (old habits die hard!), I probably don’t need to anymore.

Hope all is going well with you Peacock and that you’re not too cold and tired - the weather’s turning more chilly again here, isn’t it?

Take care, all

X

S

49

Hi all
Chris, I am so pleased for you, well done what good news. Keep up with the stretching, and like Bahons says, don’t worry about the ironing. I’m not on hormone tablets as I am HER positive, but at least you know what to take and can do the research, there must be loads of info on here. Give Lottie a big hug to celebrate.

Lily, it seems so soon that you are going back to work but at least you are easing in slowly I hope your soreness is easing up now? It must feel strange now that all your treatments are finished?

Bahons I hope your lymphoedema is easing off, is there a max amount of times you can use the laser per day?

Something I’ve never thought about - deodorants. I’ve only been using a spray on with my good arm, haven’t used anything with the bad arm. Is it ok to use deodorants? Should I wait until after rads as I don’t think I am supposed to use anything during rads.

My arm is painful still in the position for rads and with the tendonitis I suffer from in my shoulders. Getting dressed/undressed is a problem and a task.

Does rads make you depressed? I feel so down at the moment, I feel angry with everything and everyone and don’t know why maybe the rads is zzzaapping my brain too! I can’t believe how low I feel after getting through everything I have, is it normal?

Sorry, to be down I am pleased for you all though that you are all getting on so well

P xx

50

Hi Peacock,
re deodorants. I havnt used one since my op and am loathe to do so, certainly for quite a while. I am afraid to put anything on the skin of my bad side. There is allsorts in deodorants and am scared it can do more harm than good, or am I being paranoid??? I have bought a Rock, roll on deodorant made of natural things and it has no perfume, I will use this in time. I dont use sprays because it affects my asthma.
I think it is natural for us to feel down from time to time. We have all been through hell, a long and scary year and unlike a broken leg we will always have the fear of C in us even after all our treatment finishes. Not only that the treatement knocks the stuffing out of us, weakens us not just physically but mentally too. I believe that rads can really tire you out, travelling and the rads. Our bodies, minds will take quite a while to recover and thats what we need to understand. We will not suddenly feel good but hopefully week by week we will feel a little bit fitter. No one but those of us who have been through this could ever hope to completely understand what we have gone through, thats why it is so good to have each other to talk etc to. I think I have read somewhere on the other threads about depression, especially after all treatement has finished. I will try and find it. If you start to get really low please visit your doctor. It may help to go on anti depressants for a while, they certainly help to support you until you feel you can manage without them. Hope you are able to get lots of rest too as fatigue can bring you down. Dont suffer in silence and keep talking to ‘us’.

lots of hugs
Chris xxxxxxxx

51

Hi,
firstly Chris I think that news deserves a woooooooooooooooooooooweeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee.
Thank goodness you don’t have to go in for a second op now and bless all the rest of those little nodes for dodging trouble. So hopefully now you can settle into getting your movement back and then rattling through rads and then done. The arm movement you need is to be able to put the palm of your hand on the back of your head, about ear level. it is quite a long way back so keep the exercises going lots of times but gently. I am not considered post menopausal (even though i think I am) and so I am on Tamoxifen, well the expensive version nolvadex-d, until he decides to do a blood test and no flushes or side effects so far, 8 weeks in. I think he puts people in this area on Femara, which is a worry as it thins hair apparently. Oh no not my hair again, can’t stand it! I tried the aluminium free deodorants but they run all down your body so quite messy. As Bahons syas chemo/rads have stopped the need for much anyway so no idea if they work well or not. Even my good side has been affected the same way so I think it may be more to do with my low temperature. It was 34.4 last week but a bit warmer this week.
Peacock how are the rads going? The soreness went immediately I put the cool gel things on. The other thing that worked for a while was hydrocortisone cream to take the bright red out. Still going commando so I have to have that sorted out before going back to school!!! It is actually 10 months that i have been off work and have not even been allowed to visit once. I thought i had been off a really long time, feels like ages since I drove into the car park and lugged 200 books up the stairs, puffing all the way. It is odd when you finish the main treatment, taking a tablet each day is a bit of a mental prop for some of us. Are you off for Herceptin next? How is the house coming along now? good luck for getting through rads ok.
Bahons - yes I will have to wait a while for a swim as I am peeling a lot still and the skin underneath is tender still. I thought starting on a Thursday would be better than a Sunday night crisis that I have to be up on Monday morning. Then I have 2 weeks before I get a week’s holiday for half term to lie in if I need to. I go in to work next week to discuss what I will be doing and how many classes I have to teach. I have been told it will be very light at first so sounds hopeful. I am amazed by all your knowledge and work with the lasers, you ought to set up a business and help others.
How are you feeling now, could you say that the chemo is out your system yet? I still get acid/reflux if not careful about what I eat later in the evening. i wonder if that will stay now. I was just glad not to get an ulcer as I thought I might throught the last months.
Anyway take care everyone
Love
Lilyx

52

Hi all

It’s jolly quiet here, so I thought I’d post a quick hello.

So sorry you are feeling low, Peacock. I think it’s understandable after what has been a long and arduous year for you. What Chris says about bodies being severely knocked about is so true; it takes more than a few weeks to recover from all this. I slept for 11 hours on Saturday night and I’m expecting to carry on having spells like that for quite a while.

When I had the full Monty (surgery, chemo, rads) four, nearly five years ago, the onc I had then said it could take up to two years to get full energy levels back and to feel ‘normal’ - a relative term, I think!

I can use the laser as much as I want, Peacock, there is no limit except my own boredom threshold and how tired the arm gets that is holding it!

Hope you are easing nicely into work now Lily (and not being talked into doing anything extra!).

X to all. And do rant and moan as much as you like, everyone. Not every day can be a good day. That’s what is so good about this site - we can listen and offer support, knowing just how it feels.

S

53

Hi all,
just to say hello and catch up with you.

I have a dexa bone scan on 27th (I think) and rads planning on 3rd feb so I will soon be on the move again.
I went to hospital yday to check whether I needed some drainage doing but the nurse decided it didnt really need doing and best not to put a needle in if its not really necessary. I was happy with that. Still sore boob and under arm but healing is ok. The ‘batwing’ part of my bad arm underneath is really sore and always has been since op, the nurse said that its cording (not sure what that means exactly) but to take pain killers if necessary. Mylegs still ache esp. up and down stairs but slowly getting a bit better. My hair is slowly trying to get through but patchy. Hope the patches begin to grow! I started my arimidex yesterday so am waiting to see how I go on them.

I usually get Lottie out for an hours walk most days (horrible weather excluded). We have a lovely circular route through fields and part road, where I can let her off to do her own thing. She chased a rabbit a couple of days ago but seems to forget that she will be 12 in June and isnt as fast as she used to be! I always tell her that she will pay for it later but she cant help herself!!.
I love putting seed, fat out for the birds at the moment and get great pleasure from watching them from my bedroom window. I have seen so many different varieties and colours, normally I would be too busy to notice. I wonder if my homing pigeon will fly back to say hello, I will be watching out for it.

have a good day
Chris x

54

Hi Chris,

I have put for you below the link to some information regarding ‘cording’. If you need some further support with this then please do phone the helpline, the staff here will be only too happy to assist. 0808 800 6000

Cording info: beta.breastcancercare.org.uk/server.php?show=nav.387

55

Thanks Jo I will hav a look x Chris

56

Hello to all

Just a short one as I am about to fall asleep.

Thanks for all your support, I am feeling better now I think I was just having an off day. Fed up with rads, purely because I feel it takes up so much of my time each day that could be better spent! Must stop complaining cos I know its being done for my own good.

Chris I understand about the pain and pulling in your under arm. I still get the same feeling. My physio lady says that I’ve got good movement and flexibility but its so painful when moved into certain positions. She says the muscle is sticking to the scar so massage and movement is necessary to unstick it. She thinks that if I don’t have this massage and movement then in 6 months my shoulder will be frozen.

Take care all, nighty nighty

xxx

PS Lily haven’t forgotten you, are you back at work yet? I think its another few weeks isn’t it?

57

Hi,
I wish you much success with getting those arms moving. It must be much tougher having the surgery after chemo, when you are expected to be mobile for rads. You have so much less healing time. More physio friend always says do the exercises more often and gently to get results. Chris I think you have to remember how recently you had it done and be careful, just like you say to Lottie!! I hope it improves soon for both of you. Peacock, I am not surprised the rads journey gets to you, mine was only 50 miles and it just takes over your life. Hope your skin is holding up.
Bahons are you working at present? I went for my interview on Monday and caught up with a lot of staff. I wasn’t supposed to be seeing the kids but an unexpected fire alarm meant I saw all 1200 that day. I was fine and they are just constantly saying they don’t want me to do too much, which has made me feel confident about my return next week. I felt tired when I got home so I am glad I decided to have a short first week and not go back on a Monday.
It seems incredible that I have been off for 10 months and the things I have gone through. I really didn’t think I would manage it. Thank you for all your support on here, it has really kept me going along with other friends I have on-line
take care
Lily x

58

Hi all

Glad you are feeling better Peacock - hope your arm is loosening up a bit. It’s been pouring with rain here - same with you? (We had four steres of wood delivered yesterday and just got it all under cover before the heavens opened!) With physio and rads, it’s not surprising that you feel as tho’ you never get a moment to yourself. Are your legs still improving?

How lovely to have such warm, considerate and supportive colleagues, Lily. It sounds as tho’ you will have a really happy and well-paced return to work. No, I’m not working at the moment - I haven’t since we moved to France - concentrated on getting my degree and getting everything sorted out to become French residents - healthcare, driving licences, tax, etc. But, funny you should ask, I am currently looking into some homebased freelance work to keep me out of mischief now that some of the fog in my brain seem to have dispersed.

Chris, we too put out fatballs for the birds. The milder climate here doesn’t seem to make them any less hungry! We have a family of sparrows in our outbuildings and they are so funny - bouncing around like little grey tennis balls when the weather is really cold. And I must say a big thank you to you again for signing the lymphoedema petition - we are so, so close to 1,000 names now!

Bye for now, everyone. And, as always, don’t overdo it!

X

S

59

Hello Bahons

Isn’t the weather awful, I’ve never seen winds like we have at the moment here - trees are blown down everywhere and living in a mobile home is not easy with weather like this. Torrential rain, and we have to mop up floors where its coming in, goodness knows where though its just puddling on the floor in a couple of places. All good fun and I suppose a bit of an adventure LOL. What a good idea to do some homebased work, like me, it gives you something to get the brain active again. Any idea what you might do? Finding work in France isn’t easy is it?

The birds we have around here are beautiful, lots of yellow tits, blue tits, woodpeckers and even the dreaded magpies that keep getting into the chicken coup and nicking the eggs! There are loads of falcons, owls and eagles too. We even see red squirrels sometimes. We introduced a new hen into our group (we’ve got 6 now) but she’s slightly smaller than the others, they haven’t taken to her and started pecking at her so we have had to put her into the garage for a while. Hopefully once she’s bigger she’ll stick up for herself.

Lily your employers sound great, and if this is your first full time week coming up remember to take it easy and try to get as many breaks as you can. Power naps can be very useful if you get the chance. Are you all healed nicely now from the rads? The burning for me has just started, my skin is a nice square of red so at least I can see where they are zapping. It’s strange though, the burnings seems to come from inside doesn’t it?

Chris how are you doing? Is the cording a permanent thing or will it improve as time passes? Lottie doesn’t pull on the lead does she? How are your legs?

Well I’ve been feeling pretty achey, lots of pains all over really and can’t put a finger on it so I am presuming its a SE of either chemo or herceptin. A good nights sleep wouldn’t go amiss.

The roof is finally finished hooray! The house is looking really good and I can’t wait to be living in it and having a lovely bath. It’s holding up with our almost hurricane force wind so that pleases OH, I think secretly he was a bit scared that a puff of wind would make it fall down. I’m now busy planning our veg garden and where I’m going to have it, I’m not sure I’m going to have the strength to be digging just yet, but I really enjoy planting seeds and watching veg grow, and of course eating them too. Last year was a bit disappointing what with having cancer, and also the veg patch was in the wrong place.

Have a great weekend everyone, take care

P xx

60

Hi,
Peacock congratulations on having a roof!! Must be very exciting now you are on this stage to see it all coming together. Definitely get someone else to dig it or your arm will be sure to play you up, as repetitive work. What are you planning to grow? I saw the weather reports and wondered if it had affected you and Bahons. My skin is fine now, it just looks tanned underneath and near the armpit but very smooth. I have stitches or something trying to break out through my operation scar that jabs like a splinter. I bet it is my cardio doc’s triple knots like last time! So annoying and it makes the scar go red too. Hope you don’t ‘catch fire’ like me just after rads finish. You will be glad not to do that journey though. I am going in to work again tomorrow for a while to collect books and find out who and what subject i will be teaching. The kids are so sweet when they see me, even the naughtier ones.
Chris hope everyhting continues to improve. I found that it plateaued out at times and then I was pleasantly surprised when it started improving again. I don’t think I had bat wings, sounds horrible and hope they fly away soon. Good luck with your bone scan, which I think you said is early next week. I had one at the start and fell asleep during mine. I woke up to find the thing passing right over my head and wondered where i was for a second. It is not enclosed, you just lie on a bed and asheet of metal like a table top passes slowly over you. The radioactive tracer is teeny. Lots of luck with that.
Bahons glad you were ok through that bad weather too and got your logs in safely. I did not realise that you had not worked. I am sure you could look to English companies too if working on the internet. Hope you find something you like. I hope going back to my job will be ok. Sometimes I feel I have such a different attitude now and don’t always manage to hide my reaction if someone says something I don’t like! All on the surface these days. I also have to practise not saying unsuitable words in case one pops out in class! I once tried to say successful symetry and said something totally different and made them all fall about laughing. You can imagine what I said!
well hope you all have an enjoyable week
lily x