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

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Lily200
Member

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

Hi,
hope you are all ok. Sorry about the picture (not me, not even at my best years gone by!) but I am on a cyber hen party. I am fine, starting to get a bit wobbly about having my first mammos since dx, which are in a fortnight. Also going away for a week in the Uk with all the family in a big house. Work is licking up pace and I am on a big timetable now but managing ok. Some days I come in and fall asleep as soon as I sit down. At least it solved the insomnia!lol. Dipstick congrats on finishing your rads and I am sorry I feel I should have given you more support for the home run. Hope you are on the mend now and that your skin was not too sore. I smelt of burnt flesh for ages afterwards, horrible. Good luck with your return to work. It is starnge because going back to work seems so alien and emotional and hard work in the beginning. But you can't get back to normal without sliding back into the old routine. A chicken and egg situation.
Take care everyone
Lily x

dipstick
Member

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

Hi all,

just to dot the I's and cross the T's ...

Thankfully I have had my last of 15 rads today. Skin colouring a bit but no real problems, will keep plastering cream on for a couple of weeks. I am waiting for an appt. with WEll Work to have a chat and decide on how to get back into the swing of things again. I will probably do 1 day in the 1st week, 2 days the second week etc for 4 weeks and then back to 'normal' from there. Thankfully though I will get paid for my 27 hrs contract from the 1st week.
I read your posts on here so can keep up a bit with how you are. I'm really sorry that even after all the treatement I am aware that some of you are battling with some nasty side-effects still and have done for a long time.
All the best Lily, Peacock and Bahons for your future, wish I could do more,

All take care
love Chris xxx

Bahons2
Member

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

Hi there

Glad to see we're all around!

Thinking back to one of my earlier posts, I hope no-one got the impression that I was on the sauce every night to try to relieve the pain!!!! I just noticed the effect a few years ago and then it was explained unto me about the muscle relaxing properties of alcohol.

Chris - it's been great talking to you and getting your support from afar - will do doubt bump into you around the site (lots of interesting debates on here at the moment.....)from time to time. Hope you continue to do well. Are you still wearing the wig?

Or....as Peacock says, we could start another thread and just post on it very occasionally - our own little spot where we could 'touch base'(!) from time to time.

Peacock, hope the recent warmth and sunshine are helping to ease your aches and pains.

Hope you are still enjoying your teaching routine, Lily.

I am about to up my studying as I have exams (aargh, panic) next month. Lymphoedema is continuing to slowly improve (I think) - have just started on a course of 30 x half hour MLD sessions, which should give it a boost in the right direction.

Take care all

X

S

Lily200
Member

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

Hi,
still here, just less hours in the day now I am back teaching and a couch potato when I get in quite often. Chris well done for getting along with your rads. It seems to have whizzed by so hope you have made a good recovery from the operation. Lots of luck when you go back to work.It is odd but you gradually get back into your old life again. Peacock I am really sorry to hear you have been left with pain. Perhaps it will ease with time. I thought my acid reflux was staying forever but it has stopped now. Looking forward to hearing you are in your house one of these days, when time and money permit.
Bahons hope the lymph is still responding to treatment and that things are going ok with you right now.
I also mainly post on after treatment section. Let me know if you move and fingers crossed for all of you
Lily x

dipstick
Member

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

Hi Peacock,

I will leave this spot now and look around the site. I will find where you are posting and say hello from time to time. Good luck everyone and thankyou for all your support over the last year, it really has been invaluable.

take care,
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain"

so lets get our wellies on and splash!!!

Chris xxxxxxxx

peacock
Member

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

Hi everyone

Maybe we should move our thread to another spot as we are all finished on chemo now? I very rarely look at this spot, I tend to go to "after treatment has finished", although of course my treatment with continue a while with Herceptin.

Glad to hear Chris that you are plodding through rads, not long to go now. It all seems like a distant memory to me these days, and those days of taxotere - well although long past unfortunately the effects are lingering on. My nails are now splitting quite bad and are really sore, but this could be down to Herceptin also. Who knows! How is the hair coming back? Are you looking forward to working again. Sorry to hear you are in pain with your hip, and I hope your scan results are good.

I think pain is the legacy I have been left with from taxotere. It's mostly in my shoulders and arms, but I also get hip pain and leg pain and knees that don't want to work - I just keep getting told its the treatment. Herceptin is also a pain causer so it looks like I am in for a long ride until August. I am hoping to get rid of my portacath then though.

I've been busy planting seeds in our greenhouse, we are not yet living in the house but hopefully by summer - we'll see.

How is Lottie? We are going to install an electric dog fence tomorrow as our chow chow won't stop taking himself off for walks every day, thankfully its very rural but even so it would be better if he didn't go off. So if you get a sudden power surge, it'll be me treading on the dog fence LOL.

Hope Lily and Bahons are all well, I think Lily is busy with work and weddings and Bahons is studying, isn't it funny how life carries on, but that is good.

Love to all

P xx

dipstick
Member

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

Hi everyone,
hope you are all ok,
It seems that you are all weaning yourselves off the site now, hopefully then you are beginning to get your life back on track after the last horrendous year. I have had 6 of 15 rads now and am doing fine, 9 to go and then thinking about and planning return to work in April. Hip bone still giving me pain but will see doc on the 16th and also about bone scan results.

best wishes
Chris x

dipstick
Member

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

Hi all

I had my 1st rads today at 830am. It took longer than I anticipated but went fine. It seemed to take ages getting me exactly in the right position, move up a little, move down a bit, go to the side etc etc!!! but then you have all been there. 2nd one tomorrow at 830am.
I then spent about 45mins in the cafe and went and had my hearing aids fitted. They are great but it will take a little while to get used to the noisy world that you are all living in!"! I couldnt believe how noisy the fish tank filter was and pushed it further into the water, I thought I had a tap running!. I can even talk on the phone without putting it on so everyone hears the conversation. When I first talked with them on it was really odd hearing my voice. Words with 's' on the end sound like I am hissing!!! but to you it would sound normal. It just shows what I have been missing.
My right hip is giving me a lot of trouble lately and is very painful. I struggle to get in/out of the car, taking shoes off, going upstairs etc. I think I will have to go to the docs. but may wait till the 16th when I go about the bone scan. I have had the pains on and off for several years (am wondering if all my running set it off), I have seen the doc about it before and saw a physio who moved my leg all over the place which didnt give me too much pain so he said there wasnt much wrong with me!! It seems to have come back with avengence, perhaps its just ligaments, muscle etc around the joint and I dont know if anything can be done about that. This time I want some answers.
Lily, I am taking Arimidex for 5 years. I get quite bad leg aches, especially on the right side, bearable unless I'm trying to get to sleep then I have a couple of painkillers.
My hair is too short just yet and very soft, babyish, hence the wig.... oh and I think there is going to be quite a bit of 'silver'!!!
I had to defrost the car windows this morning at 730 but now the sun is shining and it is beautiful. What a lovely evening. Roll on spring/summer and I really hope we are all well enough to enjoy it relatively pain free. The sun makes a world of difference doesnt it.
Yes I have aqueous cream Lily and also bought some aloe vera gel and have been advised to use a gentle non scented soap.1 down, 14 to go!!

love and best wishes to you all
Chris x

Lily200
Member

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

Hi,
well work is going fine and they are being very kind to me. I was very blunt and forthright in telling them that I had to come back to work because they were not paying me, despite my GP wanting to sign me off for another month or more. So I can still arrive late and leave early if I wish to. My teaching timetable has expanded and I spend most of my time trying to get the Year 11s their c or above in maths.It will be good for them and the school if we can do it. Last year not one student failed maths, so a lot of pressure to do it again. I am enjoying being back and have very little or no work to bring home or plan. I do feel tired and often nod off when I get home though. I am having such a good time with the wedding plans, it has been a really good thing to distract me from Bc and helped me to cope with my treatment finishing. I feel like I forgot my house insurance or something, now it has finished, although the tablets are a good emotional crutch. I have a check up every 12 weeks now and my next one is tomorrow. I alternate with the surgeon and the oncologist.
I am sorry to hear that you are putting up with constant pain, that must be horrible. I am a bit stiff on tamoxifen and my bones snap and crunch a lot but they did that before. Bahons, I love the nicknames. My hair has had several cuts as it is very fine and underlayers are constantly appearing in various badger shades! The venue is a converted barn and historic buildings but very swanky inside and I think they plan a disco or live band for music. Will give you a link neraer the time and you can check it out and imagine me trying to look slim in a posh outfit!!LOL. Is your wether warming uo yet, it is over here and everyone started mowing lawns - not me !!
Peacock - I totally understand how this site can sometimes be supportive and at other times like a constant reminder of what if. Just come on and chat when you feel like it. Due to this new site I am posting less but really want to keep up with all of you that I have travelled this journey with for so long. Sorry to hear about your pains and i know it just isn't as simple as being told you are fine so forget it. The wedding has helped me a lot but also scares me that I might not be there too. I just try to push it to the back of my mind and keeping busy definitely helps. I hope working on your garden will give you something nice to focus on. An acre sounds lovely, lots of room to stroll around.Do you have any fruit trees, etc? The house plans sound great, I do like open plan living although I am far too messy and need doors to hide rubbish from visitors!I hope you can soon get back to your plaans and finish it.I have a reaction to diclofenac so glad i don't need to rely on it. I would have enjoyed half-term more if I hadn't caught a heavy head cold and had to have antibiotics for sinusitis. Felt quite poorly, in fact worse than most days on chemo. Is it just me but I really begrudge being ill with ordinary illnesses now and get very impatient to be better.
Chris how are you getting on? Good luck with your first rads this week. Have you bought your aqueous cream ready? I had early appointmnets too and found they freed the rest of the day nicely. Hope your skin and scar behave for you. I have found it strange to lose all my free time now I am back at work but it also makes me feel more normal again being back and schools are such fast moving places. The kids made me feel like a superstar when I came back and they have no idea what was wrong either. I note you have bought another wig, how is your hair coming along? Some chemo regimes seem to make the regrowth slower than others.Will you be having hormone tablets, if so which ones? Hope you feel like you are getting close to the end of all your treatment now.
Take care everyone
Lily x

Bahons2
Member

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

Hi all

Sorry to have been so quiet for so long. You all sound jolly busy!

Lily, weddings and work, Peacock, gardening, dipstick, rads nearly upon you.

Well, I've been just dossing about in comparison. More unpaid bits and bobs of work (shall have to get ruthless soon!). Wed. mornings French class, Mon. pm bc exercise class (it' all go). A trip over the border to Spain for some cheap groceries last week. Will be starting some MLD for the lymphoedema again, soon. It's pretty good, all things considered, but could do with a boost, as I couldn't have that side done when I was having chemotherapy.

Peacock, you do sound as tho' you are in lot of pain - much worse than mine, so I shall note the Bromazepam, but not ask for it yet. Is it getting any better? I do hope so. I think all the treatment can, in addition to causing pain either directly or indirectly, make us very very tense indeed, which makes everything worse. And it's only natural to suspect every ache and pain of being something more sinister, whether we do it subconsciously or otherwise.

Chris, I stopped covering my head a few weeks ago. As soon as there was fluff on it! Mind you, I always have my hair very short, so I didn't look much different to 'normal', I imagine. It felt very liberating and OH has promoted me from 'Madame Kojak' to 'Bristlebonce'. Fingers crossed the rads are prompt and you don't end up hanging around too much.

A barn does sound lovely Lily - I'm sure it will be a sensational venue, a real hit. Will there be a 'barn dance' afterwards? Hope you managed to relax a bit over half tern, too.

I'll say cheerio for now. Hope this finds you all as well as poss, under the circs....

X

S

peacock
Member

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

Hello everyone, sorry to have taken so long to catch up with you all, no excuse really although I have been busy with my internet work and have been trying to avoid coming on the site too often, its nothing personal but I found that I was getting so down about some of the posts on the secondaries thread and feel so sad for so many ladies, I thought it best not to come in.

I’ve been coping with quite a lot of pain as you know, and when I had a visit last week to see my Onc he basically said the pain is in my head – in other words I am too worrying about mets. He’s done some blood tests but is pretty sure it’s nothing to worry about (oh yes I’ve heard that one before). The pain is definitely NOT in my head, but it is everywhere else - but I also know that stress and anxiety can make pain worse so I think I know what he's getting at.

Since then I’ve been trying to pull myself together and try to get on with life, so I have been planting some vegetable seeds and hope to get our allotment going to provide us with some lovely home grown veg later this year. We have an acre of land here, so might as well put some of it to good use.

We desperately want to move into the lovely house as soon as possible but, as OH has been on unpaid compassionate leave since my dx, we’ve run out of money for now so until he goes back to work and we can start putting into the house fund again, sadly we’ll have to wait. Hopefully by the middle of the year we will be in and reasonably settled, although it will be like a big open barn to begin with. We are busy drawing up plans for the kitchen. It’s going to be an open kitchen/lounge/dining room area, with 1 bedroom at each end of the house. It is exciting, we’ve done well living in a mobile home for just over a year now but we are beginning to crack under the lack of space that we have, especially with 2 dogs and 3 cats.

Bahons thanks for the information about the diclofenac, I am finding that nothing I have had so far is really helping with the pain but the muscle relaxant is called Bromazepam 6mg. It’s also a pill for anti anxiety and is given for restless leg syndrome and is also a premed, and the sort of pill you can take for de-stressing before going to the dentist. I take 18 mg at night, and this seems to help a bit with the sleep and with the pain because if I don’t take them I am in agony. I checked out the Herceptin website and it does say one of the possible side effects can be muscular pains, but I don’t know if these pains are bone or muscle pain. The concern about these though is that they can be addictive. I’ve never had a dexa bone scan, and I don’t know if I am going/have been through the menopause. At 51 I do wonder, but as I had a gyny procedure 3 years ago I’ve not had any periods since, except the odd one now and again. Osteoporosis has been in my family with my grandmother and my mother has it too, so maybe I should ask for one? Oh, the cat picture is our old cat Charlie, he’s about 13 but we’re not sure really as he was a rescue cat.

Chris so you have a date for rads now. Will the journey be a long one for you? At least you will be giving yourself a couple of weeks to recuperate after finishing rads, I must say that at the moment 2 weeks after finishing most days I am not too tired, its still more the physical side of things that affect me more. I haven’t had any problems with my skin, it’s a bit sore but only really when I wear a bra so these days I am more like a “swing low” fashion icon. I have only needed to use almond oil on the skin which seems to have worked very well. All the best for you when you go to collect your new wig, is it a similar style to your real hair?

The venue for the wedding sounds wonderful Lily, and very romantic. It must be very exciting for you and how lovely that your daughter is including you in all the fittings etc. I hope by now your cold is getting better, are viruses still doing the rounds in England? How did your appt go with the surgeon? Have you enjoyed half term? Not long to go now before Easter – crikey it was only just Christmas wasn’t it?? I’m glad that slowly life is returning to normal for you, but I expect we all have good days and bad days I certainly do.

Well again I have waffled on, so I hope you are all still with me, take care everyone,

P xx

dipstick
Member

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

Hi everyone

Thankfully I have just received dates for my rads to begin.It will be 9 weeks from my op and begins on 5th March, finishes around 25th. I have been given all my times too. I wanted early morning to get it overwith for the day and to get used to an early start regularly to get ready for return to work. Most appts are between 830 and 9.10am so there shouldnt be too much of a waiting problem (I live in hope). A friend said that at least I have had time to heal before rads begin. I wanted to return to work 1st April but cant see that happening now. Maybe a couple of weeks later.Nine months off work... people will be expecting a new arrival!!!. (and if there was one it would only be a puppy!).
Luckily I am only contracted for 27hrs a week so that is hopefully not too much. I work a 'shift' pattern between 8am and 10pm and each shift not more than 6 hours. My shifts are on a regular 4 week rota so I am able to plan ahead. I wont know whats hit me will I?.
I will need to gently remove myself from the computer and all the games I have been playing, they have helped to keep me sane (ish). I can see how easily it is to become attached to it.
I have just paid £59 for a perscription for a new wig, mainly for when I go back to work. My hair is slowly growing but much too short to go 'naked'. It will bring back memories of when I went to get my first wig, I hope I dont get upset, I have tears in my eyes now just thinking about it. It doesnt take much does it?
I do have joint aches and pains and my legs are quite weak especially when going upstairs, ouch. It is worse when they appear in bed as I cant get off to sleep but a couple of pain killers usually do the trick.
Lily you are really a busy bee. Sorry to hear that the bugs have got you, I work with people and that is always going to be a risk. The wedding plans seem to be going well. Good luck for tomorrow and chosing a dress, hope you have lots of fun.
Bahons I hope the tablets are doing their job for your pain. Its good that you are not depending on alcohol too much. Its so frustrating after all you have been through to not be comfortable now. Would laser treatement be able to help?
I had a bone scan about 3 weeks ago. I asked the nurse the results and she said they were ok for my age (!) and that I just needed to make sure I had enough exercise and a good diet. A week later I have had a letter from my docs to ask me to make a non urgent appt to go and see them re bone scan. I hope its not just to tell me about exercise and diet!!!. Anyway my appt is not until 16 March as the doc I need to see is away. I must ring up the hosp now re my hearing aids!!! Isn't old age fun!!!!
Peacock hope your shoulders are easing now. Bahons had some laser treatement would that be able to ease the pain? I know what you mean about not counting chickens...especially re our health. Even when all the treatment has finished there is no real celebrating.
When will you actually be moving into your lovely new house. Make sure you have plenty of help. Your job is to decide where the furniture is going and anyone else can put it there!!! You have a very talented hubby building his own house... I hope you helped to draw up the plans for the kitchen!!!!!!!
I live in a small house 7 miles outside of Lincoln city centre in a relatively small village. My back garden is just enough for me to manage and have somewhere to sit out in the summer. It backs out onto a farmers field so I have a lovely clear view over the fields. Its great when the pheasants walk by.
Roll on summer. I would like some lovely hot weather to make us all feel good. Last summer didnt exist for me. I will enjoy this one.
What is the date for the wedding Lily?

take care all
Chris x

Lily200
Member

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

Hi,
well done Bahons for giving us a boot up the backside to post.LOL. It is half term and so unfair that I have a stinky cold and sinusitis, courtesy of 1200 germ breathing children at school, not to mention the staff of course! One of the hazards of being a teacher. Still the antibiotics should clear it, just hope it goes quickly as made me sick this morning. The doc has told me he is willing to sign me straight off work again if I feel tired or under pressure, so really good to know he will be sympathetic if I struggle. The flu jab did not see off this bug! I have planned a quiet day tomorrow as went shopping today and felt really yuk quite quickly. Managed to buy quite a lot of new clothes before giving in and lying on the sofa.
Wedding plans are slowly coming along with the venue and registrar now booked. They are getting married at the venue after falling in love with the cute little barn there which is as churchlike as you can get without being in a church. I love to hear the wedding march in a church but this is what they want and are so happy. We have been on 3 wedding dress trips and I was thrilled to be asked to go to all of them. We heard that one of her favourite designers is in a local shop for 2 days and have booked to meet her and see her entire collection on Friday. So I am even more excited about that.
I have lost the plot about where evryone is so please let me know and hope you are all getting on ok. I am finding it easier to get back to normal but it is slow progress. I think I need the tamoxifen tablet as an emotional crutch to be honest as well as its protective powers. When at home, I could quite easily give up work but when I am there I can see the future and normality on the horizon. It just takes so much energy to be a teacher. I have got back to my Masters though and have made a hesitant start on my 10,000 word research project, all rubbish but at least it is started.
keep smiling everyone
Lily x

Bahons2
Member

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

Hi all

Time somebody wrote something here! Lily you're excused, as you're a working girl again now 🙂 And very busy with wedding stuff, etc. What's the latest there?

Peacock we survived the storm pretty well, thanks - we're near the banks of the Canal du Midi, so sort of sheltered up to a point. I did wonder about you in the mobile home, though!

Chris, hope you, your birds and Lottie are going OK, too.

Re: the shoulders, Peacock, my GP stumped up for 100 mg tablets of slow release diclofenac the other day. I've paired this up with a 1000 mg tablet of paracetamol and I take both about 11am (not exactly greased lightning in the morning, me). That seems to get me through most of the day.

I'm very interested to hear about your muscle relaxants, tho'. What do you take, and are they prescription only? As I mentioned, I've had this trouble for years and I've found alcohol as good as anything that I've been given to date at relieving the pain - a physio told me it acts as a muscle relaxant itself....which is OK, in a way, but obviously I don't want to drink heaps just to stop the pain. I think chemotherapy acts as a muscle relaxant too, which is why some people seem to 'pull' things more easily when they are having it.

Well, I'd better get going. Yes, unemployment is rising here, too, Lily and I'm still waiting to here if there is any 'proper' work coming my way. I keep doing unpaid stuff for friends and family....softie that I am!

Take care, all

X

S

PS - Love the new pic, Peacock!

peacock
Member

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

Hi Chris, Glad that your arm is improving, and as for your boob, well that will take a little bit of time won’t it. Yes I am glad that I’ve finished but its seems a heck of a strange feeling – that might sound weird and I should have celebrated, but I don’t want to just yet in case its like “counting your chickens”. My skin is nicely suntanned and seems to be holding out at the moment with almond oil, which I apply twice a day when I remember. I was taking some really strong tramadol tabs for the pains and still not sleeping so I thought I might as well give up. Now I just take a muscle relaxant at night, which seems to help with sleep. Bending down is a nightmare – I can’t do much below waist level – including cleaning my feet in the shower (ugh!) Our animals don’t seem to care that we’re a bit under the weather do they, bless them. Your birds sounds lovely, do you live in the country? Are you managing your exercises ok?

Hi Lily, going to a wedding fayre must have been lovely, I think it must be every girls dream to go to one, can I come to the next one please???? I am still doing the internet work, which is good as Mr P is returning to work at end of March, after almost a year off. Of course he’s built a house in that time, but more importantly he has been my rock and I couldn’t have done it without him. With no other family members around, it would have been impossible. You ask about unemployment in France, well basically, I know 2 people, both French whose contracts were cancelled in Dec, so yes, it is bad for the French people but even worse for expats – even those with good language skills. It’s a worry for us really, as our 14 year old daughter will have some decisions to make re a career soon, and it might be better for her to do Uni in UK rather than here.

Hi Bahons, I’ll be watching in earnest for your book - 'My life with Lymphoedema', and why not, your knowledge will be so useful to others. Do they know much about it here in France? Did you survive the storm of the 24th Jan ok? We were a bit scared as we’re living in a mobile home and some good friends of ours invited us to go and stay with them if it got too difficult. In fact we fared better than them because they had no electricity for 3 days and we never had 1 power cut (except when we clicked the kettle on – too much equipment too little amp/kw or whatever). We’ve got it wet and windy too. How is your studying coming along?

As for my arms and shoulders, well although I’ve got pretty good movement in my “bad” one, because of the problem I have with my shoulders (tendonitis I think) it affects most movements like getting dressed, pulling my knickers up (so I try not to have a wee wee too often LOL), lifting my arms up, putting my arms behind me and so on. I feel it is a disability but so far haven’t got to the bottom of it. I had it before my dx, then during chemo it all went away but since mx it’s come back with a vengeance and is so painful. So as well as your book on lymphoedema Bahons, I think I might write one on tendonitis.

If you’ve all managed to keep awake whilst reading this well, I am at the end of my long post now and I wish you all well, take care

Bahons2
Member

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

Hi there all

Hope you are OK Peacock, as not seen much of you for a while. You must be so glad that the rads and all the associated travelling are finally over. Any improvement in the shoulders yet?

I think you are being very sensible with your arm, Chris. I believe that they say if you can sleep on your 'good' side at night, it's best, but not always easy if you've always slept on the 'bad' one before. Ditto Lottie's lead - I sometimes wonder if that was one of the contributory factors to my first lymphoedema, as I had my collie x alsatian then. Trouble is, back then in the mid-90s, no-one said a word of warning about it, nothing, nada, zilch, then just shrugged their shoulders when it happened. Things have improved these days, patients are much better informed of the risks.

Lily, the wedding prep. sounds fascinating, but don't wear yourself out! Or is it half term this week? If it is, hope you are managing to put your feet up a fair bit. I don't know about a book, Lily, how about 'My life with Lymphoedema' Catchy or what? There again, I could, with a large percentage of the profits donated towards research and a cure.

Well,not so cold here, but wet and windy. The UK sounds like hell on earth with all the rain and snow, I do feel for you, Lily and and Chris. Peacock usually gets similar weather to me, I think.

Signing off for now - take care, all.

X

S

dipstick
Member

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

Hi everyone, glad we have all caught up with each other.

We had more snow last night, I've been in the garden putting more bird food out in several different places and defrosting the bird water. They get through so much its like feeding the five thousand!!! I have to watch Lottie like a hawk or she tries to eat the lot!!! I will take her to the woods later and tire her out (well thats the plan).
Lily I am on Arimidex and have now had 3 weeks of them. Everything seems to go in 3 week cycles for me!!!
There was only rubbish on tv last night. Someone told me to watch Paris Hiltons best British friend. I have never seen such drivel. What are those girls thinking about, how sad that they chase a (well I dont know how to describe her, dont think she actually does anything) person to be her best friend, needless to say its the 'exciting lifestyle' they are after.
I have been spending a lot of time on a new word game that I was given on another site,dont know if they will let me put it on here, it is free, I will pm you so you can have a look.

bye for now
Chris x

Lily200
Member

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

Hi,
brilliant to hear how everyone is and to have Chris back again. It sounds like you have been through a big recovery since last posting. Are you on hormone drugs yet? I had to start them as soon as I went for rads planning, apparently they take 3 weeks to work protectively. I am also feeling quite stiff at times and think it is the tamoxifen. If you are not on it, you can't blame the tablets though.
Peacock a % of people get frozen shoulder after BC syrgery, just wondering if that might be your problem. How is the house going? Do you ahve a date to move in yet? Well done for finishing rads and hope the skin stays calm, mine took off after I finished. Are you able to work yet, as I seem to recall you work from home?
Chris, I think you are very careful about lifting in the early days and probably wise to do so. I totally forget but have a backpack for all my marking now, to take the weight on my shoulder. Not sure if it helps but feels better. I did not have full clearance though so feel i might get away with carrying more than I probably should and my Grandson weighs a ton!! Bahons it is amazing you are making so much progress with your lymphoedema, I think you could have a best seller oif you wrote it all down. Have you thought any more about a job? Is unemployment rising in France too, like over here?

I have been to a wediing fayre today with my daughter as her partner was too busy. Apart from the 6 inches of icey water on the roads there it was so lovely. We looked at dresses and tiaras, tried cakes, looked at wedding albums, spoke to jewellers and caterers and photographers. A real girls day out and shattered when I got home and had the whole family in for roast dinner. So I have a swollen foot again tonight. Grrrrrrrr. It was worth it!
take care
lily x

dipstick
Member

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

Hi Peacock

great that you have finished everything. How has your skin held up? Are you putting lots of cream on? Do you take any pain killers or anti inflam tablets for all your aches and pains. We can cope with most things normally but with not sleeping it must make things seem twice as bad.I know what you mean about feeling a lot older than you are. I am the same when bending down, thats not too bad, its the getting back up. I tend to hold onto things and pull myself up mumbling ouch etc!! as I do it.
Thankfully my arm seems to be ok and has 95% of movement back. My boob is v tender and lumpy where the op was so I tend not to sleep on that side.
I get really frustrated when people are doing things for me as I stand by and watch. My daughter and friend brought in my new tv cabinet from the car (it was so heavy) and then had to lift the tv off the old stand and move onto the new one. I hate to feel unable to do things for myself. I have done some shopping (food) today and have to remember to use the left arm for lifting the bags in/out of the car but I dont always remember and then am cross with myself incase I cause other problems. The trouble is I dont feel weak in my right arm and sometimes feel I am being too 'soft'!
I even hold Lotties lead in my left hand now, although it feels 'wrong' just incase she sees something and pulls my arm.

Well, thats it for now, I must start getting to bed earlier to get ready for work in a couple of months (I hope) as Lottie gets me up about 7.30 a.m to go out. Its tempting to sneak back to bed but by the time I have a drink I am awake and often have made the mistake of looking on the computer.....and the day begins!

take care
Chris x

peacock
Member

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

Hi ladies, well we are all here again at last! Glad that you finally made it Chris and it was nice to hear your news. You sound like you are doing absolutely brilliantly if you can manage to take Lottie out for an hour....... well done you, I'm not surprised you are aching.

Actually I've been much worse for all my aches and pains over the last couple of weeks, I've been trying to walk more but still taking it easy, I do my arm exercises but don't go mad and don't lift anything heavy as told. I've been telling my physio and the dr at rads, but they all think it is side effects from chemo still and will take time. Sleeping is very difficult because of my shoulder pains, in both shoulders and arms are excruciating - you'd think I'd had them both operated on, not just one. Bending, well once I go down I can't get up again my poor body feels like its 95 instead of 51.

I finished rads yesterday, after 25 sessions so that's it now except for Herceptin. I can't believe I started this journey last April - although not actually dx until June.

You are the last one of us now Chris to finish, and it won't be long, you wait it will go in a flash.

Hope that work is getting easier now you are on less hours Lily? What wonderful employers you have.

Glad that your lymphoedema is improving Bahons, and long may it continue to do so.

Thanks for all your nice words about our house.

Take care

P xx

dipstick
Member

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

Hi Ladies,
well here I am at last. The new site wouldnt accept my password and so I had to wait several days to receive a new one. Am not sure what I think about this new site but will give it time and try and find my way around it.
I have had a bone density scan and apparently my bones are fine for my age so it doesnt look as though I will be getting anything for them although I may invest in something myself.
On monday I had my rads planning but apparently the onc wasnt happy with the positioning (too much lung covered ) and so I had to go again the day after and be 'measured up' again. Thankfully the tatoo markers were ok or I could have had fun doing dot to dot when bored!!
I have to wait about 2-3 weeks before my 3 weeks of rads begin. They have 3 machines at Lincoln but only 2 are running as there isnt enough trained staff for the 3rd one!!!!! What a waste of an expensive machine. Oh well, I wont be back to work quite as early as I thought. My arm pains are nearly gone now, just a bit tender and boob very lumpy where the scars are healing.
I am going to send off a perscription payment of nearly £60 so that I can have a second wig. My hair is growing back but nowhere near enough to go 'public'... i,e work so a second wig will be necessary.
After I have walked for one or two hours with Lottie or around town I ache like mad trying to get into my car, my back aches and the tops of my legs really, really hurt and it is agony sometimes to bend. Sometimes I actually lift my leg into the car. Sounds awful but I dont know what is going on. The spine/hip bone scan was fine so could it be ligaments and muscle??? I really have aged but not like a good wine!!!
It has been lovely getting Lottie out in the snow, she was like Bambi yesterday slipping and sliding but doing everything as usual at 90 miles an hour.... I think its called living and learning but I dont hold out much hope for Lotties ability to learn!!!
Peacock your new house looks great, you must be getting really excited. Will you have to choose all new furniture to go in it??
Bahons, great about the laser treatement and Lily great to be back teaching again although will take some getting used to. What a difference a few weeks make.
Its good to catch up with you all again at last, take care, will go and have a look round and see what I can find on here!!

bye for now
Chris x

Bahons2
Member

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

Hi all - Chris, I hope you are still with us?

Takes a lot of tunnelling these days to find out own little grotto, doesn't it? I hope they can reinstate the 'most recent posts from any topic/category' facility. I really miss that.

Was just about to post a day or so ago and the website timed me out, and I couldn't be fagged to go through all the signing in hoops again.....

Well, Peacock, since my last chemo on Nov 13th have not had any kind of test or contact with the hospital, only a 'phone call from the Clinique Pasteur in Toulouse giving me an appt for a PET scan on 16th March.

I was back at my local joint last week for a bone density scan, tho' and the results were excellent. I had my ovaries (rather ineptly, as it has turned out) removed when I ws 38, 14 years ago, so I've been at risk of osteoporosis for years. Fortunately, my then GP got me my first bone scan (had to wait a year for it!) and the results were not that good, so I've been on bone strenghtening meds ever since. I've gone from being borderline to average/above average. Goodness knows why these drugs aren't routinely offered to women. Think of the suffering that could be avoided and the money the NHS could save not having to treat broken wrists and hips!

Lily, so sorry to hear you felt so overwhelmed at work, but I think it's fantastic that your school acted so quickly to help you. I hope you've had a good weekend and lovely birthday celebrations all round. Did you get round to choosing dresses, too? It must have been an action packed few days for you!

Lymphoedema is responding nicely to the new laser techniques my physio friend showed me - it's helping my tennis elbow, too. It's lovely having pain-free interludes at last!

I'm typing this at the double - don't want to get timed out again!

Hope it's not getting too cold back in the UK - wrap up warm!

Take care, all

X

S

Lily200
Member

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

Hi,
well done Peacock, I just started to get use to all this change too. Hardest thing is remembering where I have posted.The house looks so sweet and very well built tell MR P. I need to find an image as can't put a photo on because of job. Speaking of which, i have completed 2 days now. Came home and cried after the first day as was overwhelmed by how fast my timetable would expand after first 2 weeks. Went in today and said I feel it is too much too soon and feel like not coming back now. They moved very quickly and removed 3 classes, which is quite a lot of hours, and I can now arrive late and leave early if not teaching.So feeling happy about the pace stepping up after half term now. Have a few classes this half term and I am really enjoying teaching them. This weekend it is my son's birthday and mine on Monday so we have a big family meal out this weekend, which will be nice. Wedding plans are settled now the venue is chosen and booked. They are starting to think about photographers and we are looking at dresses when we are all free on a Saturday.
I had a check with the onc this week. I was told I had to be seen within 6 weeks of finishing rads and before every visit I have my full blood counts plus dozens more done for various organs and minerals, etc. I already have the forms for more blood tests when i go back in 3 months. Seeing my surgeon for a 9 month check on Monday and then will see him again on the anniversary of my op for mammos as well as 3 months after that. My report says I am being watchfully monitored but they are very pleased, they say. My tumour markers had dropped a lot lower, which was the main thing I was waiting to hear about. They have been ok but used to be on my mind if they started rising. They only test them occasionally, so I use to write it on the form every time so I could see what they were! Nobody ever worked out it was me.LOL. I am no good at this contact thing, so thanks everyone for finding me. Hope to hear from Chris soon and Bahons. Hope you are both getting on ok. What do you have to do next?
Lily x

peacock
Member

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

Hello girls

It took me ages to find this thread, but got here in the end!

Hope you are all doing ok, Bahons are you managing to keep the lymphoedema tolerable, are you having physio for it?

Chris how are you doing, have you had your rads planning yet, if so when are you starting.

Lily how is it going being back at work? Any developments on the wedding front?

As you can all see, my picture is our new house. We're still living in the mobile home and probably it won't be ready for another 4 months but I so long to get in there.

The nurse took a blood test yesterday to check on loads of things like liver, kidneys, tumour markers as I haven't had a follow up since chemo stopped in October. Is it normal to have a follow up fairly soon after chemo?

Having Herceptin tomorrow, had a heart check yesterday and everything is fine. Only 7 more rads to go - hooray. I think it is going to feel pretty strange when it all stops.

Anyway I hope you all manage to find this, I enjoy our discussions

Take care all

Pxx

Lily200
Member

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

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

peacock
Member

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

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

Bahons2
Member

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

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

Lily200
Member

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

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

peacock
Member

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

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?

dipstick
Member

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

Thanks Jo I will hav a look x Chris

Jo_BCC
Member

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

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

dipstick
Member

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

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

Bahons2
Member

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

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

Lily200
Member

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

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

dipstick
Member

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

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

peacock
Member

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

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

Bahons2
Member

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

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

dipstick
Member

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

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

Lily200
Member

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

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

Bahons2
Member

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

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

peacock
Member

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

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

dipstick
Member

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

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

Lily200
Member

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

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

peacock
Member

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

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

peacock
Member

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

Keep up the gentle exercises Chris, it will pay off in the end hopefully. Don't worry about the swelling, I am still a bit swollen and numb, after 8 weeks. My biggest problem is my arm, it really can get quite painful but only really at night, so sleeping can be a nightmare - I wish!

Lily so far so good, although I've noticed a bit of heartburn/acid in the evenings again, a bit like when on chemo, did you find that? The arm position is very uncomfortable, I took a painkiller today about half an hour before going in but it didn't really make any difference so I might as well grin and bear it. I'm surprised how long I am on the bed in that position, about 20 minutes in all with about 6 zaps from different angles. Sorry to hear you are getting a sore area now, how strange after all those weeks of rads. I haven't managed to get aqueous cream here, but the dr suggested almond oil or even olive oil. Sounds like I will be cooked quite nicely, 180oC for 20 minutes! Please keep me posted about the burn as I might need to know myself at some stage.

Are you managing to avoid all the grippe and viruses that is going around? So far we've been ok but there is a lot of it about. For you English ladies grippe is the same as flu.so hope its keeping at bay for you too. Are you all snowed in? We have snow forecast, so I hope I will still manage to get to my treatments ok.

Anyway that's it from me for now, take care all

P xx

Lily200
Member

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

Hi,
i tried to post last night but lost it and then lost the internet link, so much for broadband! Chris I am so pleased that it is all done and that you sound like it went well and very cheerful. We will all be hoping for good news from the results. Why did they do a full clearance? Anyway my physio friend always told me that doing the exercises gently and more often produced better results than doing less but more vigorously. So keep up the ' head polishing' !! best wishes for a speedy recovery.
Peacock how are you getting on with rads? Hope the arm position is not uncomfortable when it is done. I have a sore burn now, which came out after I finished so no-one to show it to. It is fine when I am cold but like sunburn, when my body temp goes up it burns like it is on fire. I might seek an alternative cream tomorrow as aqueous is not helping apart from being cool.
Bahons I had no after effect from the flu jab. As my neighbours have flu, I am glad to be covered as it must be round here now. I did have an itchy lump on the site for a few days, thats all. The nit injected it right through my smallpox scar so the lump went off to one side. How are you feeling now? Have all the tax effects worn off?
Love
Lily x

dipstick
Member

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

Hi Peacock,

yes I have been given some exercises to do, beginning today. I pointed out to the breast nurse that the 2nd exercise may be a bit difficult for me as it said you should brush your HAIR!!!!!!!! i wish..... My right side seems a b it swolen but I suppose that is only natural and also quite numb. I will take pain killers today and then stop and see what happens. I think for us it is v important to carry on doing gentle arm and shoulder exercises always to try to keep things from tightening up. It was quite funny trying to get out of the bath today as I didnt want to push up with my right arm, had to get on my knees first!!! funny what we take for granted until it isnt there!!! but we will find a way around these things!!!!!!

take care all
Chris xxx

peacock
Member

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

Hi Chris good to hear things went well and you are back home already. Take it easy, and it goes without saying that I hope your results are good when you go on 14th.

Have you been told to do exercises for your arm? My arm seems to be stiffening up now despite doing the exercises, but I am not sure if this is down to the tendonitis I have suffered in both shoulders for nearly 3 years because the other one is quite bad too - I must get something done about it!

Take care

P xx

dipstick
Member

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

Hi all
went in yesterday, had op about 4pm and out at 6pm into recovery room till 7 and then had to stay in overnight, luckily was prepared for that. WLE plus complete node removal. Surgeon and anaesthetist (sp ?) were brilliant. No sickness. I came out at 2 pm this pm. Surprisingly I wasnt draining much fluid and therefore drain was removed before I came home!!! I was amazed, hope it doesnt build up too much in me now. I have some lovely knee high socks to wear for 2 weeks. I am not due to go back to see surgeon til 14 th Jan when I hope to know what they found, so am holding fire on being too happy unless I need to go back again. So far so good. Will sign off now,

Chris xxx

Bahons2
Member

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

Hi all - and apologies because....

I haven't posted really since before Xmas - it was hectic - but lovely. My Mum (and best friend) and my two sweet grown-up sons were with us. They all went a few days ago, but then we had the (close) rellie from hell + alcoholic spouse for New Year - not so lovely, but our duty is done for the foreseeable future as far as they are concerned.

Chris, so sorry I missed wishing you well before your op - I do hope it went well and that you are now back home and well on the road to recovery. Take it easy, won't you?

Lily - it must be lovely to have finished rads and be looking forward to going back to work next month. I hope you are feeling nice and 'cool' when you do. A flu jab? I don't think I'd fancy one just yet - did you feel unwell at all afterwards or have you just sailed through it?

Peacock - snap! - we had snow, too. Woke up to a blizzard on Boxing Day (but still managed to get into town to get tooth fixed, thanks - he's done a smashing job and you can't see the join - it's a front tooth). OH took some brilliant pics of our palm trees weighed down by snow! Hope you have recovered properly from your fall - just what you didn't need, I imagine. How are your legs now?

I'll sign off for now. Going to flop on sofa and recover.

Here's wishing 2009 is kind to us all.

X

S