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

peacock
Member

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

Chris, thinking about you for tomorrow and hope it all goes well. If it is any consolation, just a few weeks after a mx and full clearance, although my arm hurts a bit at times (even more now after my fall) I can move it pretty well and can do most things. You'll be fine, I wasn't sick at all even though I can be quite nauseaus with anaesthetic I think they give you something.

Lily I am pleased for you that you can start 2009 with your treatment at an end and hope the tiredness doesn't get too bad for you. My journey will be about an hour and 1/2 each way, so quite a long trip for a few minutes of treatment. I have got some aloe vere gel which I had heard was good for rads, so will start using it tomorrow ready for Monday.

You've been quiet Bahons, and hope that is because you've had a super Christmas and New Year.

So, good luck to us all for 2009 - this WILL be our year!

P xx

Lily200
Member

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

Hi,
Chris I know just how you feel waiting for the time to tick past but I take the view, the sooner it gets here the sooner it is done. I think we have more strength than we think at times like this. As it is a lumpectomy now it should be much less surgery and I think I was out of surgery in under an hour easily. Think carefully about the clothes you pack as you will probably come out with a drain below your arm pit, for a few days. I had very little pain or discomfort afterwards except if someone tried to hug me. Will be hoping you sail through this part and are soon home convalescing. It was much much less than I thought.I was quizzed about whether I was usually sick so I'm sure they will chat about it and make this time better. I had no nausea. Anyway lots of luck with this next part.

I have finished rads, my last visit was new years eve. I am so glad not to have a 50 mile drive early each morning now and celebrated with a lie in this morning till 9. I was surprise to wake up to slight soreness after I have finished as nothing to speak of before now. It apparently keeps cooking like a microwave and will peak in 7 - 10 days. Hopefully not red hot peaks!!! LOL. Peacock you must get some cream as it is just like a sunburn feeling and the cool cream soothes it. On advice I started the cream a few days before rads to keep moisture levels up. I think you said there is no aqueous cream but think most eczema creams would be simple enough to not irritate. Is it a long trip for you each day? That is the bot that gets tiring. I was sorry to hear about your fall and can imagine how it would hurt your arm, etc. Better get some shoes with better grips if you are out for rads every day.It sounds like you are in for a snowy year, none in my part of the world yet. Someone phoned from Florida to say it was 80 degrees, grrrrr I didn't need to know that!
Bahons hope you had some nice days over Christmas and stayed clear of all the bugs. My GP gave me the flu jab yesterday as IO said I was thinking about it. He ran out, rushed in and stabbed me!! Yoweee he hasn't done one for a while and bled down my jumper. He says I might still get it but it will stop me getting pneumonia and ending up in hospital. I really didn't need another injection! I am going back to work next month so at least 1200peopleto get me with their bugs each day.
Happy New Year and hope it will be better news for all of us
Lily x

dipstick
Member

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

Hi All

thankyou for your good wishes for this friday 2nd Jan. I have to be at hosp for 11 am for a pm op. I have managed not to think about it much but need to get my head into gear now. I will sort my overnight case although I may not need it but know that I am usually very very sick after anaesthetic. I will let them know as I think there is something that they can give me that may help. I am getting the odd fluttering butterfly now as I talk about it!. Thankfully all the chemo s/es have all but gone so I am ready for the next stage. For a couple of weeks I had a lot of swelling on my lower legs and feet like pumpkins. I have just been left with quite strong aches in my legs but am sure time will sort that out.
Peacock so sorry you fell, especially injuring your bad arm/side, the last thing you needed. Fortunately we havnt had snow in Lincoln but if it does I am staying indoors, bread or no bread!!! Have you managed to keep doing your exercises Peacock, can you put your arm above your head now that you have hurt it again? (very gently!) Good luck with the rads on monday x.
Bahons, did you do ok at the dentist? That is a job I will need to sort out eventually, along with hearing aids! and no, I am not 90!!!.
Lily, all done and dusted. A mere 3 months ago we thought it would never end. Let this be encouragement for anyone reading this at the beginning of their journey.

God bless ladies and lots of good wishes that you all continue to go from strength to strength and that 2009 brings nothing but happiness and above all good health.

Will get back when I can

Chris xxx

peacock
Member

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

Hello all

Just wanted to say that I hope you all had a really great Christmas, and wishing you lots of happiness, luck and of course health for 2009!

We have all done so well, Lily you must be finished rads now, Chris is having her op next week and Bahons you must be all done too. Just me now to have my rads, starting next Monday.

Our Christmas came and went so fast, we had snow on boxing day - about 4 ins - which was really lovely to look at, but really was a nightmare when we tried to get out on the road the day after - they don't grit the roads here and we live in the sticks.

I managed to keep upright all through the snow and icy patches, then guess what, yesterday I went down with a bang, right onto my bottom and my "dodgy" arm. I don't know how it happened, it just did. So today I am very sore, my chest feels really bruised, my bottom is aching and my poor arm and hand really hurts - but hey, after what I've been through this is nothing!

I know I shouldn't lift heavy bags and to be careful with my arm, but what happens if it gets bruised and bashed?

Chris, lots and lots of good wishes for your op on 2nd

and thank you all for being so supportive during this year

HAPPY NEW YEAR EVERYONE, and may it be a good one.

P xxxx

Lily200
Member

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

Hi,
hope you were all able to enjoy eating, drinking and generally having a nice time for a change. Chris just wanted to wish you tons of luck and smooth sailing through the next part of your treatment. Will be thinking of you
Lily x

dipstick
Member

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

Hi all,

had my pre op. ass. yesterday, all went ok, bloods, heart check, form filling etc. The nurse wasnt sure if I needed a chest xray so she will get back to me on that one and I may have to nip to hosp. before 2 jan. I am going to my daughters for xmas dinner this afternoon, I will go a bit early and help with the prep. Tomorrow my friend is coming and we are having sirloin steak and all that goes with it!
Hope you all have a good, peaceful, restful (!) time and lots of gentle healing.
Well done everyone, we have come a long way

Love Chris xxx

Bahons2
Member

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

Hi all - just a quick one to say Happy Xmas to you all - hope it's everything you're wishing for.

V busy - will post more, and again, when the dust has settled after the festivities.

Peacock - I think your turkey was a bargain - the prices down here are much higher - we have settled for a free-range corn fed capon instead. Haven't had one of those for years...

Anyway - Season's Greetings to everyone and DON'T OVERDO IT!

X to all

S

Lily200
Member

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

Hi,
Peacock there is no way I could lose weight on rads. After the cement/glue taste went, everything taste so nice I am getting fatter every day! I am not joking I really am.I had my first apple today, yum. I am hopeful that my cesspit stomach will agree to let me eat fruit and veg again now! I have a slight cough with rads but no-one is taking any notice. They just told me not to move and I should not attempt to put my hand over my mouth. Just to cough into the air! I am not sure what rads will be like in France. At my unit they just talk to each other mostly and it is a jumble of numbers, angles,degrees and measurements, then they all run out. It is a very precise process to get you skin at exactly the correct angle to just skim the tops of your lung but not too much. At the moment it is just nothing really going in, just a part of your day but no worrying involved. You do have to have your arm raised back, almost hand to ear so it is worth exercising the arm to be ready for it. That is the only disadvantage of having the chemo first as you are still recovering from surgery with less time to recover than us surgery first ladies. Will you have far to travel for rads? That is the worst part.
Dipstick hope all goes well at your appointment tomorrow and that you are ok now with what they plan to do. Good to get it over and done with but I know how horrible it is when it is hanging over you. Hope you can relax a little over Christmas.
bahons happy Christmas to you too and hope you can have a restful spell to recharge your batteries.
Happy Christmas all
Lily x

peacock
Member

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

Hi ladies

Yes Bahons we managed to get a turkey in Champion, it was 13 euros for a 3 ½ kilo so I don’t think it was too badly priced. Guess what, the chickens are finally laying eggs and we get around 4 per day, so 5 chickens with 4 eggs. Some of them are double yolkers too, fantastic. It’s good that your arm is going down at last (touching wood) but sorry to hear that your teeth are playing you up, what a Christmas present eh!

Hi Lily, I am so relieved to hear that your rads aren’t too bad, and hope I will have the same effect. Only a couple more to go now, how lovely for you that everything is over before Christmas. My back/sciatica is easier now thanks, still doing the arm exercises which are a bit “uncomfortable”, not painful but during the night when I am trying to sleep (not easy at the mo) both my arms hurt.

My weight has dropped by 8 kilos since I finished chemo, and can fit back into most of my normal trousers and my lovely boots now. I was 68 when starting chemo so that’s not bad, but I will bear in mind what you say Lily about not trying to lose weight whilst on rads.

How are you Chris, how did it go at with the pre op appointment?

Haven’t heard anything from you Carrie-Ann hope everything is ok? We both start rads on the same day, 5 Jan except I am having 5 weeks - I do wonder if it is necessary for so many but I suppose they know what they're doing.

Anyway, must get on – oh forgot to say that the roof is finished – hooray – Mr P is testing out the woodburner as I write. We won’t be in for Christmas unfortunately, the weather put us back but we do hope to have our Christmas dinner in our “grand design”.

Take care and happy Christmas to all xxxxxxxxxxx

Lily200
Member

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

Hi,
well as odd as it sounds, I am really enjoying rads!!! Partly because it is such a doddle compared to chemo and no needles, but also because I have such a good time each day. I just handed my treatment schedule over and all and sundry signed up to take me, family, friends, and even neighbours. So I have only driven 2 out of 9 times and as it is 9 am we go on to a cafe or shopping, sometimes both. The waistline is expanding unfortunately but I was told on no account must you try to lose weight while having rads, so I have a great excuse. No tiredness so far and just the faintest tan the disappears by the next morning, so fingers crossed will be ok. Chris I am having 15 rads as had a lumpectomy too. I get about 50 seconds zap on each side and just to the breast. I wondewr whether it is the rads to the armpit and longer sessions that cause most problems? I hope you will be glad you have a smaller op and the wound will be so much smaller to heal. Just hope they are on the ball and get it all first go. I will be thinking of you on Tuesday. I just had to fill in a form about horses!!! Apparaently if you work with them you are more likely to be carrying MRSA as they carry it!! I did not even have a blood test as when on chemo they already know your situation. I was just in overnight, how about you? Open fronted PJs and tops are a blessing for the first week as it can be uncomfortable to raise your arm, depending on how much surgery is in the armpit. Just keep thinking how soon all that bit will be done and another big thing ticked off your list and the C will be in the path lab instead of you - the best part. Bahons, are most French ovens very small? I have a huge turkey breast crown waiting to get the treatment next week. They are much easier to fit in than the whole body. I feel like a turkey when I go for rads!! I am sure I must be glowing in the dark!! I am rather concerned that Femara thinned you hair as that is the one he says I will have in a year or so - not my poor hair again! Peacock I hope your wound is starting to flatten down and that you are getting full movement back slowly but steadily. You must feel much easier as the fluid goes and your legs feel lighter. Pooo about the sciatica, I have had that on occasions and it is a beastly pain. I hate that feeling that you have been slapped and burnt down the legs, hope it shifts very soon for good. I had no positive nodes, mind you they only took the one sentinel node out, but seem to think that was the only one in question. Rads are better than chemo at getting BC around the chest so I think it is extra insurance really. Apparently rads can get tiny bits that have curved round and under bones so i felt it was a good thing to add. Maybe it is when you have rads to other parts that the side effects kick in more often, I am not sure. Take care.
Still 6 days of rads left and then I am done, so feeling very cheerful this week and humming Christmas songs most of the day. I dare not go into town, feeling this happy I would buy everything in sight for the family!!
Starting to think that work will start again soon and can't always get myself in the right mindset to teach soem days. Chemo brain could not even remember what time the school day ended!!
Enjoy the run up to Christmas and Chris try to put everything out your mind for a bit if you can.
Lily x

Bahons2
Member

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

Hi everyone - lovely to hear more news.

I expect you are glad you made a decision and things are sort of settled Chris - hope all goes well at the pre-op. Will you be sneaking in a bit of last minute Xmas shopping that day as well?

What great news that your legs are coming down, Peacock - running to the loo is an excellent sign, I reckon. Any luck with the Turkey, Peacock? I have a small French oven and am in an agony of indecision over what to do - still haven't bought anything yet. There is a big Xmas meat market here tomorrow, so will see what's on offer there.

My arms are feeling easier and, whisper, I think the left maybe going down a bit!, I think I'll be going to the Clinique Pasteur for my PET scan - that's where they've sent me before. I must say it feels strange not to be taking anti-C meds for the first time in years. I've taken them all in my time, Tamoxifen (by far the worst!), Arimidex (the best), Aromasin (mild panic attacks) and finally Femara (hair thinned drastically). I may be having Faslodex injections instead next year. I've posted on here asking for people's experience of it, but I'm beginning to think it isn't yet prescribed much in the UK.

Yes, we'll all be twiddling our thumbs with no appts, one day, to go to, won't we? Who are we kidding, we're women! Anyhow, doesn't look as tho' mine will stop - I have to to the dentists's on Dec 26 - to get another tooth sorted! A word of warning here, girls, after I had FEC four odd years ago, I had no end of trouble with my teeth - I think the chemo altered the pH of my saliva and no less than five teeth chipped or broke within a few weeks of each other. I think I could be in for a repeat performance by the looks of things.

Hope all is well with you, Lily and you are not getting too tired with rads and travelling.

X to all and take care

S

peacock
Member

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

Hello to all

Sorry I've been a bit quiet on here, I've had terrible sciatica and the pain in my back and legs has been crucifying. This was caused, I believe, by the physio I've been having to my shoulders! Anyway, the lymphatic drainage to my legs seems to be working, swelling is going down thank goodness. Keep running to the loo so I suppose its got to come out somehow.

Had my tatooes done yesterday, I have 2 as well Lily. My rads are starting on 5 January for 5 weeks, so 25 sessions. It sounds a bit scary about what rads can do, so I don't blame Chris for not wanting to have them. I'm not sure I need them really as they tell me all nodes were ok and no cancer? I think they are just blasting as much as poss - so hope it works.

Good luck with your pre op appt Chris - at least you know what is happening now so you can rest easy over Christmas.

Glad to hear your swelling is going down too Bahons, and its good news that your nodes are ok. Will you be going to Claudius Regaud for further scans etc?

I had a dose of "chemo belly" again this week, funny how it came back after all these weeks - by that I mean diarreah and stomach ache, just like when I was having Taxotere.

Well having Herceptin again tomorrow so yet another appointment, won't life be boring when we've stopped all these appointments?

Off to go shopping now, having real trouble trying to buy a Turkey for Xmas, bring back Bernard Matthews!

Bye for now

P xx

dipstick
Member

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

Hi Bahons, I too have been posting on other threads!!!

Brilliant news about your results, its good they are keeping a close eye on you. I understand that you dont want to take any more meds, treatement, than you really need to (re the diuretics). The massages are working too, its about time you had some easier times and it has cheered me up reading your thread. Have a very well earned break and a lovely Christimas.

Peacock, hope everything is going ok for you too. Keep massaging that op site. (and everything else>>)

Lily, how are the rads going, are you getting tired from the travelling etc, now? Have you done much more writing lately? or is Christmas planning taking up all your time?

After talking with the surgeon, I decided to take his advice, he seemed to believe that a lumpectomy (wle) and full node removal is an option and that an immediate mx was possibly not necessary and so for now that is what I am doing. I'm not sure it will be the last op. but will give it a go first. He wasnt keen at all of doing a bi lat. but will discuss that if I need to in due course. Thanks for the advice on rads Bahons, I had already phoned up and given hosp. my choice. I believe I would only be having 3 weeks rads if thats the way it eventually goes.

I have a pre-op appt. next tuesday 23rd at 2pm. I would rather have had the op sooner but Christmas got in the way!

Hope you are all in a position to have a good Christmas, I think we all just about have our taste back (not quite).

take care all,
best wishes
Chris x

Bahons2
Member

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

Hi Lily - thanks for your good wishes - they don't know what the return is, but simply because of my history, they want to watch it. Onc seems to think it could well be nothing, but of course he has to keep an eye on it.

Know what you mean about food - I am so enjoying both cooking AND eating again!

X

S

Lily200
Member

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

Bahons,
just wanted to say how brilliant that there is no C in the nodes now. Good old tax was worth putting up with for that good news. Where is the returning bit? I am sorry to hear that but from what you have posted, it seems like this is something they are ready to deal with. A holiday from treatment sounds lovely and wish you a well deserved break to get everything back to normal working order. I am still working on it myself but really enjoying the taste of food so overdoing it most days. I will have to do more cycling.
So pleased that you can have a bit of a rest and time to be you again. Happy Christmas
Lily x

Bahons2
Member

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

Hi all, and welcome from me, carrieann

Well, I've been meaning to post here and kept getting distracted by other interesting threads....shame on me.

Well, went to discuss my results with onc yesterday. No sign of cancer in lymph nodes now, so it looks as tho' the Taxotere has done what was asked of it in that respect. They want to keep their eye on a 6mm return on the CT scan - he says he thinks it's nothing, but because of my long and colourful cancer history, I'll be getting a PET scan (the third in 18 months - Toulouse here I come) in three months time. Until then, he said, have a holiday. I'm quietly pleased; this is, I suppose, nearly as good a result as could be hoped for.

And thank you all for your good wishes and support.

Hope everyone is doing OK - my lymphoedema is improving now that the amount of chemo inside me is diminishing - onc also said I can have arm on cancer side treated now, what a relief.

I now have a prescription for a bone density scan in my file, will be sorting that out after Chrimbo.

Chris - I've been following your dilemma - in your shoes (and with my own little bit of hindsight), I would be heavily inclined to choose the solution which enabled you to avoid rads. Without wishing to alarm anyone here, I feel that the side effects can be downplayed too much. In addition, to lymphoedema, some people develop permanent shoulder problems and a very unfortunate few can be affected by brachial plexopathy. It was 'sold' to me as a 'bit like bad sunburn' and turned into rather more.

Peacock, I already have the massage you are having on your legs on my arms. It has a systemic effect, so it helps to drain my ankles, etc, too. GP gave me another ordonnance for diuretics last week, too. Haven't actually been taking them as things are now improving slowly under their own steam.

Hope the rads are still going smoothly and promptly, Lily.

Better go and do something Christmassy, I suppose!

X to all

S

Lily200
Member

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

Hi evryone,
just wondering how you are and if there is any news. Chris have you made your decision yet? They have to train to do SNB and are not allowed until successful in a number of trial cases. Your wound would be much smaller and much less chance of lymphoedema if you have SNB. Don't any of the surgeons there offer it? The advantage of full clearance is that if there are any nodes affected they don't have to do another op. I wish you luck in trying to work out what is best for you and what a rotten way to start the new year with an op. Have lots of good times over Christmas to make up for it.
Julia - hi nice to chat on here too, hope you are feeling brighter.
Peacock I also hope your recovery is speeding up and keep doing the exercises. How long do you wait to have the recon done? I know it varies even in different counties over here. Will that be at your new hospital too? I am sure you will be really pleased to get that done and have a good profile with the new uplifting shape.Are you in the house yet?
Bahons has the swelling strated to go down yet, I do hope so and then you will be able to enjoy Christmas more. Have you got your results back from the scan yet. I hope if you have they were what you were hoping to hear or better.
Have a good week if you can
Lily x

carrieann
Member

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

Hi: Nice of you all to welcome me.

Chris: when I first talked to my surgeon about the op he said that since my cancer was very early and relatively small he thought that WLE and node clearance would be fine and that he was confident that would be a good operation and clear the problem. He said that if I wanted to talk about something else – mastectomy – he would be happy to do that be really did not think it was necessary. As I have a large bosom I wanted to keep as much as I could so only have scar on top of right boob and it is a bit floppy having lost some muscle at the top but with good bras and a fillet thingy in the bottom of the right side, it looks exactly the same. The node removal has left me with no feeling in a large part of the underside of the top of my arm and around the back but, thank God, no lymphodema. I made sure that I used my surgery arm right from the time I came around from the op and, so far, no problems. I think you have to get as much information as possible about your cancer so that you feel able to make the decision. As I said above, I didn’t really have a decision to make, Steven did it for me but I really didn't want surgery that I didn't need. Hope this helps a bit.

My hair was light mousey before it fell out but highlighted. I was born with thick black curly hair (caesarean section usually means you keep any hair) which slowly lightened up to blonde by the time I was about 11 and then went the usual British mouse colour thereafter. My hairdresser thinks it will go curly as it grows and then with straighten out and probably lighten up. I may have it coloured auburn as that is the colour of my wigs – decided to have a new look when the hair went.

Hope everyone else is OK and we all have a good weekend.

Chins (however may you have!) up girls!!!!

Love

Julia

peacock
Member

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

Hello
Chris I don't know what decision I would make if I were you, what a thing to have to do. It looks like the chemo worked well in shrinking your tumour.

I was told right in the beginning that I would have to have a mx, given no choice at all. It was explained that because of the type and size of tumour it was absolutely necessary.

Here I think there is no question about cost of treatment etc. and you are given the best they can give you. I do feel glad that I have had a MX (no it doesn't look too good at the moment but, I know its only temporary). Now I am about to embark on 25 radiotherapies (starting in Jan). The way it has worked for me is that I am told I have no cancer, and all the nodes were clear, the radiotherapy is just another precaution.

It is weird having one breast and one man boob, but mentally I am just preparing myself for having the best pair of boobs a 50 year old can have as the other one will be reduced to match the recon. It's just a shame they can't do anything about my wrinkles and lines on my face LOL.

I personally believe that having a mx means they are taking no chances, and it does save having an op that means another op if they don't get clear margins, but that is my belief and whatever you decide is your choice, of course.

Anyway, I hope that my words have helped one way or another and wish you all the luck in the world with making your decision.

Love P xxx

Lily200
Member

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

Hi,
just a quick post to wish you luck Chris. What a decision to have to make. I was told my odds were the same with a lumpectomy and rads or a mx, but he pushed me towards a lumpectomy. Right now I am really pleased that I don't have to worry about a prothesis or which clothes cover the surgery and I look completely the same as before but with scars for decoration. My shape is almost exactly back to how it was and no arm trouble as smaller surgery. I don't know about the future and whether this was right. I think having the surgery first makes you feel differenlty as still trying to hang on to YOU. After the Bc sinks in, I think I would find the decision much harder, as getting rid of the C is your main priority. Personally I would have none or two breasts as one seems more complicated. Many women are naturally quite happy with their new body shape, whatever it is. Good luck and what a way to start the new year! Poor you.
Lily x

dipstick
Member

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

Hi all,
welcome Julia,

had appt, to see surgeon yesterday at 2.15. Eventually got to see him at 4pm. He asked if I had had a mamo and ultrasound and I said no. The nurse apologised and I had to wait to have a mamo then a wait for ultrasound. Must have been nearly 5pm when I eventually saw surgeon. Jenny and I were falling asleep. After looking at mamo results etc. he has decided that I could actually have a wle and full node removal. I did ask lots of questions and was really put off balance as I really didnt expect that to be a possibility, as you know I had talked my way into a poss. b i lat. I kept asking that if I had an mx I would want bi lat. but he said he didnt usually do bi lat straight away to remove a 'good' boob. He kept saying that the first thing to do is to remove the cancer and concentrate on other things later!!. As I was really flumoxed he said that he would give me a few days to think what I wanted to do. He does not do snb's but as he said we know there is node involvement therefore he always does a full clearance. If I go for wle and there arent clear margins they will do it one more time. Then it will be full mx. (this is when the battle may begin for bi lat) The op will be on 2nd January. If I have wle and clearance I will have 3 weeks radio, if mx then no radio. He said it was just as 'safe' having wle and radio as full mx. He seemed to think mx at this particular time was a poss overkill but may still be needed eventually. Please can I have some hindsight!!!

Lily, you must have had your 3rd radio today, it sounds like a place to catch cold, perhaps you could wear a bobble hat and gloves!!!!!... and maybe a scarf!!!, now there's a thought.... Keep applying the cream.

Peacock, well done for getting some exercise done, I am really pleased that you are feeling the benefit of the drainage and that your arm has lots of movement in it. How did your rads planning go? I hope you are managing to massage the scar tissue area as I have read that some women have difficulty with this at first.

Bahons, good for you too going to the gym, you and Peacock will be jogging to meet us from the tunnel at this rate!!! I wouldnt mind trying some skates, the four wheeled ones coupled with elbow and knee pads and a cushion attached to my derriere!. Hope your appt. comes through soon.

Julia, was your hair coloured blonde or has it just gone haywire, I have heard it can come back a different colour but blonde to black must have been quite a shock!!! Is it curly too? I have about half a cm all over at the mo and v fair so it doesnt show very well unless the light is behind me, a bit like a gooseberry.

Going to finish wrapping few more pressies,
keep getting continually better and stronger everyone,
Chris x

peacock
Member

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

Hello Julia

Nice of you to join us, and well done for tolerating chemo so well. Enjoy your "time off" before rads and have a wonderful christmas.

I am off for rads planning today, I too am hoping I will be given time off for good behaviour over Christmas, but we'll see.

We can't buy aqueous cream here in France, pity because I would like to be able to use it as it is so good for the skin.

That sounds good Bahons your exercise class, keep up the good work and Lily don't go overdoing those christmas decs, remember to leave a space for Santa to come in!!!

Chris, how did you get on with the Onc?

Anyway must go, taxi about to arrive to take me to rads planning.

Bye for now

Pxx

carrieann
Member

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

Hi: Just registering my interest on here as I have now completed the chemo and am having six weeks off for good behaviour (ho ho) and start the rads on 5 Jan – three weeks – 15 in all. My onc didn't see the point of doing odd days and messing up my Christmas – good bloke!!

I have been very lucky with the SE's – apart from losing hair – now growing back but black instead of blonde –I didn't have any sickness or mouth ulcers or anything. Let's hope the rest of this stuff goes as well. When I saw my onc three weeks ago he said that they felt that as my body had dealt so well with the chemo they didn't think I would have any trouble with the hormones/Herceptin. I'll believe that when it happens but it is nice to hear.

I'm using the aqueous cream as a shower gel, leaves you skin beautifully soft and shiny. I bought mine from Superdrug – 500ml for £2.95 didn't think that was bad.

Will keep in touch and let's hope we all have a great Christmas to take out minds of all this.

Love

Julia
XXXXX

Lily200
Member

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

glad everyone is getting on now and shaking off the chemo days, albeit slowly at times. Second rads today and arrived early and still seen straight away. I felt a bit of pressure on my chest , not sure if that is significant though, might ask tomorrow. A word of warning for any of you heading that way, put as many clothes as possible on below the waist as the machines get cooled by blasts of cold air!! I was shivering today but went in to a second scarnner room , which was warmer than yesterdays. I get zapped with even my boot on but my bare boob is freezing. The worst thing is not being able to remove underarm hair and not able to use deodorant or even talc. They even told me not to wear my soft cotton bra so in vests for the first time since I was 8 !!! It is an easy time compared to chemo so thankful ok so far. Long may it last!
Chris lots of luck with your appointment and decision about what to do for your surgery. Recorder was a good idea. I go for rads Christmas Eve, New Years Eve should be the last. I go every week day except the bank holidays. Started hormones too as they take 3 weeks for the protactive effect to start working apparently. They are easing the cold temperature away but nothing big so far, fingers crossed as on these for ages. Hope your energy level return soon bu they will be back if you fancy another marathin in the future I am sure. Peacock great that the drainage is working already and sounds like your arm mobility is good too, especially as op not that long ago. Well done, must have been doing your exercises. Rads planning is nothing unless you have tropuble putting your arm behind your head. My boss had it straight after surgery and really struggled with her arm. They are very gentle though. How many tattoos will you have I have 2 but one I have almost rubbed off in the shower so very hard to spot. The sirens when you get treatment are scary first go and make me jump out of my skin just as I am told not to move!! Nothing nasty like needles though. Hope yours goes well. I had to but my own aqueous cream but very cheap, under £2 for a big tube.
Bahons what a pain postponing your apppointment, hope it is not a long wait for the next one. Glad you were told the good news beforehand or you would be very anxious waiting. Love the sound of the classes and hope your nails are back to normal soon.
Are you all looking forward to Christmas? I put my decorations up today and feeling very festive with tinsel everywhere I can hang it. Just trying to work out how high the chocs need to be to be out of the reach of small boys and burgler dogs!!
Lily x

Bahons2
Member

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

Hi there all

Well, appt was postponed at the last minute yesterday, so I'm doubly glad I've got some kind of inkling of the results.

I am definitely feeling better with each passing day, you too girls? My little bc exercise class had a tour of the local gym yesterday and a wee go on lots of things (no weights attached, of course). It was only three and a half weeks since the last Taxotere, but I was surprised at what I could manage, having been expecting to be able to manage nothing at all. She made sure we took everything really slowly, didn't do anything for very long, had lots of breaks and plenty of water. So don't give up on doing a marathon again, Chris! And I do hope you have a satisfying discussion with your onc this afternoon.

I open most things with a knife or scissors, now, too I only have three old nails left on my hands now, altho' the stubby little new ones are growing fast and look very healthy. I can't change toilet rolls, either, but as the only woman in the house, I daresay I'm the only one that gives a stuff, anyway.

Glad you were seen promptly for rads, Lily - makes such a difference when you don't have to hang around for hours, doesn't it?

Bye for now, all.

X

S

peacock
Member

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

Hello all

I've started manual lymphatic drainage for my leg swelling, and already after only 2 sessions my legs are beginning to feel better! I also had a go on the cross trainer (one of those things you walk on but push up and down???), boy were my legs tired but it felt good to be exercising.

My arm seems to be working ok, I can even reach my other ear over my head which I think is the goal to aim for. The scar is healing well but is still swollen around it. The physio lady didn't think it was very good and she said massage, massage and more massage around the area to free the muscle.

Off for rad planning tomorrow, so I'll let you know how it goes.

Bahons I do hope your legs begin to ease, could you try this manual massage too? It doesn't seem to be a problem for us in France getting our "ordnance" (prescription for you ladies in UK). It might be worth a try perhaps? Good luck with the crown, that will set you back a few pennies!!

Lily so glad that your rads went smoothly and heres hoping you sail through it quickly without problems. Did they give you some cream to rub in? Has the tiredness got to you yet or is it too early?

Chris, much good luck oozing your way for your Onc appointment, what a good idea to record it - don't forget to switch it on though LOL! You sleep as much as you need, your body needs to build up a bit before the Op. Those pincher things are out of the ark aren't they - that was all that was used on me at my first hospital. I fail to see how they can be accurate. I'm sure you will have ultrasounds and a mammo, even maybe an MRI.

Anyway, back to work good luck to all for today, catch you all later maybe

P xx

dipstick
Member

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

Hi everyone,

you make rads sound good Lily, I hope you sail right through them, how do they work out for Christmas?

Bahons, have you a date to see your onc. yet? Great to know that things have improved but it will be even better to hear it from the onc. mouth! I could sleep for England at the mo. Hope slowly (faster preferably) but surely my energy levels will pick up. Six years ago I ran Dublin marathon, it seems like a lifetime away. My legs feel quite weak going downstairs and ache going upstairs. Chemo really knocks the stuffing out of us. Our bodies repair themselves more during sleep so welcome sleep as a friend!!!. I cant even open a coke can top now as finger ends sore. I had to open the top of the cornflake packet with a knife instead of fingers. Where there's a will..... we will not be beaten!

Peacock, it will be nice for you to have family there at Christmas. How often do you get to see your son?
I would think it will take several weeks before your swelling on the op. site will begin to go down. Are you able to massage it yet? I have bought some bio oil for after the op and possible rads. Is your arm improving a little for you so there is a bit more movement for rads? Good luck with the rads planning tomorrow.

I am off to see my surgeon this afternoon. Dont know quite what to expect. I'm not sure if I will have a mamo and scan before I go in to talk with him as I have had no checks whatsoever during chemo, apart from lump being measured with a 'pincher', ouch. I have been given a small tape recorder to tape the meeting so that my chemo brain doesnt have to panic and 'crash' with too much info.! Still in a quandary of what to do, maybe it will fall into place today, I hope so.

Now going to get wrinkly in the bath and then suss out the new tape recorder, at least need to know how to switch it on... oh yes, and put the batteries in!!!!

bye for now,
Chris x

Lily200
Member

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

Hi,
had my first rads today. In at 9am and out at 9.10, they run a tight ship to get through all their patients. What a breeze compared to chemo, fingers crossed I will stay well, time will tell. 14 left to go and counting down.
Hope all are well
Lily x

Lily200
Member

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

Hi,
just a quick post to say brilliant Bahons that there is a an improvement. I am so pleased and you really deserve it after all that awful swelling and other side effects.
Great news
Lily x

Bahons2
Member

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

Hi all - yep, found you!

Thanks for starting this Peacock! Just to let you all know, I had the scan on Friday and, although I don't have the precise details yet (seeing onc in a day or so), as you know, they don't leave you to wait and wonder here if they can possibly avoid it, so I've been told already that the situation has improved.

Yes, the fat toe syndrome is a pain, isn't it Chris - I've found my Crocs to be a godsend. That was interesting Lily about Taxotere and the 'unique swelling'. I have to say that more than 3 weeks since the last dose, I'm fed up with it, my legs don't seem to be improving much at all. Also, all of a suddden, I can't keep my eyes open - nearly 11 hours last night. Anyone else?

The heat very often makes lymphoedema worse, Chris, but the cold doesn't improve it (well, not mine, anyway!), by and large - it's these little details that make it such a pain to live with. The heat doesn't bother me personally - I've got Raynaud's - so my lymphoedema is usually (though not at the moment thanks to the Taxotere) quite stable. The one thing that really annoys it is excessive PC use, so I have to be careful with that. Glad to hear about your mld, Peacock - that must make you feel a lot more comfortable.

I've still got watery eyes, too, especially when I go outside. And sometimes my eyes don't focus properly at all - yesterday was like that. Sorry to hear you have fluid in the eyeball Peacock - will it settle in time of its own accord?

Ah yes, stockings! I love more doing those than anything else! And even tho' I only have grown-up children and grownups to buy for (the parents of distant nieces and nephews get early cheques to buy them something...), I still enjoy it.

Well, to return to the topic of the thread...my deferred maintenance is:

1) Some (intensive, I hope) treatment for my worst arm (pending meeting with onc).

2) A crown to replace the temporary filling I had about 3 months ago (I'm still chewing on one side of my
mouth, would you believe) - may leave it till after Chrimbo even so - I'm sick of appts and waiting rooms, even
if they're nothing to do with BC.

3) A bone density scan (I'm supposed to have them every two years and it was due in July), but I couldn't face
any more faffing around - see comments at 2)!

X to all

S

Lily200
Member

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

Hi,
great new thread title Bahons and thanks for putting it into action Peacock. So the post chemo thread and hope none of us get put back on it. Quote from my US BC book ' taxotere also causes a unique syndrome of swelling and fluid retention; some fluid retention is fairly common but occasionally it can be severe. Fortunately this is reversible but takes a long time.' I hope this does not sound depressing, just wanted you to know that it will keep on improving for ages, so don't give up on getting ankles and toes back! I got swollen on cmf so don't think I would have been good on tax. My son always wanted to stick pins in my toes. He was convinced it would squirt out, had to point out it was in each cell and all that would happen was I would scream and he would have to run very fast! I still do sacks for my 4 as well as my Grandson, but they have agreed to smaller bags this year. I had a great buy in 2 charity shops, found a gucci bag and a prada bag. They are probably fakes but they will have fun with showing them off. Tricky thing is deciding who gets which one. Peacock keep stretching those arms. My friend is a physio and she says doing it more often and gently is the way to make progress fast, don't go at it too hard.
Speak soon and wrap up warm
LIly x

peacock
Member

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

Bon apetite Chris, me too I'm about to have lunch.

Those cagey things are brill when feet and legs are swollen and sore - when I was in hospital they gave me one as I couldn't bear the weight of the bedclothes on them. It's odd how taxotere has done this to all of us, it was not one of the SE mentioned when I first asked what could happen.

Wrapping presents, I haven't even started yet but to be honest this year I don't think anyone is expecting much. Our son of 23 will be joining us for Christmas, with our 13 year old daughter so that will be my pressie, I can't wait to see him. Our other daughter will be working so its unusual to see her at Christmas, consequently our little grandaughter of 4 will just be a phone call. I do miss having little children around, that is what Christmas is about!

You asked about lymphatic drainage, yes it is gentle massage in the feet and legs but she has got a "leg" thingy (don't know what to call it) that she can put the leg into and this also gives a different type of massage.

My arm is quite achey, and the exercises do stretch it, but like Lily says its gotta be done so I can have the rads. I don't know when they will be starting yet as my rad planning will be this Thursday. The scar seems to be ok, it still feels like a giant sausage though, I suppose this will take some time. Do you have a date yet for your op?

Anyway, nice to see you found this one, hopefully so will the other girls and anyone else who cares to come along

P xxx

dipstick
Member

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

Hi Peacock

thankyou for getting this one going, we're alll on the move....

Yes I do wriggle my toes in bed and try to get them comfortable, I sometimes think it would be nice to have a frame over the bed so the duvet doesnt lay on my feet. Little toes esp. still fat and painful. I think if I stick a pin in them they may burst!!!! but I will be good and hope they sort themselves out in time.
I have taken Lottie out just over the playing field for 30 mins today, I didnt realise just how cold it was, my eyes were running! It is Lincoln christmas market this w/e but think I will give it a miss and wait till next year, it gets so busy and if anyone stepped on my toes.........
Peacock, sorry I cant remember, have you a start date for your radio? Lots of moisturiser needed, have you got some ready? How is your scar healing?
Bahons, yes I hope your scan results are good too. How is your lymphodema, does cold weather ease it a bit or make it worse?
Hi Lily, hope your computer is sorted out now. I have wrapped some xmas pressies last night. I remember when the children were young just how excited I was watching them being excited.... memories. My daughter still likes a stocking!!! although it probably costs 10 times as much to fill now as it did when she was 3 !

Right, back to some tidying up, or maybe some lunch first...

take care
Chrisx

peacock
Member

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

I just thought I would get our new thread going with the title that Bahons suggested.

We've all finished chemo now, and our bodies are in the process of slowly recovering, but we know its going to be a long haul.

Some of us will just be starting radiotherapy so we can keep ourselves going with news of this process and Bahons, we all wish you the very best with your CT results, please let us know how it goes.

Well, hope you all find this thread now..............

Love P xx