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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Hi Deano xx so glad your margins are clear and you can move on. Getting a bit fed up of doing my exercises knowing I’m going to be back to square one soon. Not soon enough... it’s still 12 days to wait feels like forever knowing that there are still cells in there that want to get me! I’m having other forum worries as there’s someone on there who had a partial response to chemo, lymph nodes involved and has just finished her oral chemo and she has just been diagnosed with a recurrence... I know each case is different but when things look similar it’s hard not to feel it.

 

So tired after too many hot nights. I’m able to fall asleep at the moment but I still wake up boiling and sweating. I know I hated being cooped up but I’m almost looking forward to the surgery again so I don’t have to get up in the mornings! Although when I do the sweats seem to stop. Can’t have the window open for the foreseeable since it’s forecast to rain every single day for 10 days!!

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Re: February starters 2019 - yes, we rule!

Great news Deano.  So happy for you.  You can join us all on the radiation bus now! x

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Re: February starters 2019 - yes, we rule!

Hi All

Implausable you look beautiful darlin and your hair is longer than mine and you’ve got eyebrows mine are yet to come and I’m now 7 weeks post chemo. For some reason it doesn’t let me post photos I’ll try and get one on of my hair. 

Well got my results it was good news my cancer lump has been removed with good clear margins and out of 19 lymph nodes only one infected I asked if I’m now cancer free and surgeon said yes it’s now in a pot down the corridor ( oddly I would have liked to have seen it wished I’d asked...) my arm was drained again and it seems to be going down as it not filled up again after last weeks issue with my arm pit I burst into tears. I put a complaint in and they weee bending over backwards on thurs but it shouldn’t have to be this way....

I was so shocked with the good news as I was prepared for the worst as every time I saw the surgeon it was doom and gloom and he initially told me I had cancer....I couldn’t think straight oddly more relieved than ecstatic with the good news and I did not know what to ask him it seems a blur!!!!! I’m now waiting to have radiation therapy which he said is a preventative and I start tamoxifen on Monday for 5-10 yrs (anyone else on this)?? So I’m nearly there with treatment but not yet so phewww 

i had a great holiday in Skegness it was hot hot hot my legs have improved and I’m walking more and once my arm is better I’ll be happier 

Love you all and I hope whatever your dealing with it will get better and remember if they are treating us they can cure us and we are all worth it...,,,

You all take care and keep the updates coming 💖💖💖💖💖💖🙏

 

 

 

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Re: February starters 2019 - yes, we rule!

Finally, a do-nothing day (or at least do-little) with a nice lie in Smiley Happy  Time to catch up with my lovely ladies!!

 

Looks like I haven't posted substantially since Tuesday!  I missed all the excitement of sticking body parts in yoghurts to stay cool Smiley Very Happy  That's almost as bad as this! Smiley Very Happy  :

1564215810-picsay.jpg

 

Also giggled at the thought of Marlyn frozen stuck to her freezer Smiley Happy  have any of you seen Dumb and Dumber?dumb-and-dumber-tongue-stuck.jpg

 

 

Seeing those runner bean photos really reminded me of being little when my dad used to grow all sorts of fruit and veg in our tiny postage stamp sized garden.  I never did enjoy eating them but I used to like helping my mum pick them.  Pity your taste buds were playing up by the time you came to eat them Susie Smiley Sad  Hopefully next time they will taste better.

 

Rosina glad you are getting on well with rads.  Never occurred to me to take a dressing gown!  I just brazenly wandered around with my boobs flapping about Smiley Very Happy 

 

In fact one day I went for my reflexology appt straight after rads, went into her room, took off my shoes and socks and then started to take off my t shirt and she was all "what are you doing????!!!!" Smiley Very Happy  Just became second nature by the end to strip to the waist, I was doing it without thinking Smiley Very Happy

 

It was freezing in my zapping room too, they are a little bit over aggressive with the aircon....

 

Trixielady sorry to hear that you are still suffering so much from chemo after effects.  Hopefully you will feel a little better every day and will be feeling up to going back to work soon.  The normality of the work day does help take your mind off all this nonsense.

 

Susie you and I are so different.  You typed "it's way too hot to be indoors".  On hot days I am the opposite...."it's way too hot to be OUTDOORS" Smiley Happy  I'm definitely not much of a summer person. 

 

Seaside, I'm very impressed you've been managing bike rides during rads (lovely view of the lake).  I've been keeping up my daily walk most days but it has been a real slog!  Have only been hitting 7k or 8k steps a day which I guess is better than nothing, but that has felt like running a marathon!  My legs feel like they have been weighed down with concrete.  I don't even think that is down to the rads, as I felt like that even before zapping started.  I think it is a hangover from chemo.  Looking forward to getting back into the gym and working my muscle strength back up a bit....

 

Rosina deffo do the Jurassic Coast walk, such a beautiful part of the country!  My ma in law used to run the gift shop and cafe/ice cream parlour down at the beach at Lulworth Cove.  We took many a walk from there, in one direction you could walk up over the hill right over to Durdle Door.  In the other direction there is the petrified forest and the army range clifftop walks.  Love the place.  Hoping to get down there soon although I know I'll struggle this year with the uphill parts!

 

Your point about babies needing general anaesthetic for rads had never occurred to me, but obviously they need to lie still.  I did see a thing pop up on facebook about body cast type things to keep older children still.  It was probably one of you guys who shared it!  They were all painted to look like superheroes or Disney princesses.  They were cool.  I'll try to find a photo....

 

Even better, here's the article:

 

https://www.expressandstar.com/news/viral-news/2017/10/30/these-painted-masks-are-helping-children-t...

 

Edinbird great news re your best case scenario.  And I'm glad you now know what is happening when   This year has been such a long slog for all of us and I'm so sorry that you still have so much more to get through.  But get through it you will.  We all will.  And we will look back on 2019 as our "annus horribilis" (to quote her maj), but also the year that made us stronger.

 

Daisydi, how are you getting on with rads?  Sorry to hear that your first session was such a faff.  Longest I've been on the bed with my arms up was about 35 mins the day the machine was being temperemental, and that was long enough.  Usual sessions only took 10 to 15 mins thankfully.

 

I haven't felt a hot/burning sensation in the boob skin from rads.  Did that calm down as you progressed?  If not I'd raise it with the radiographers...

 

Deano that fluid swelling under your arm sounds horrid Smiley Sad  grapefruits are big!!!  Glad you managed a trip away though despite the discomfort.


I guess I half understand the point that the body needs to reabsorb the fluid but that is no excuse for the nurses to be arsey with you!  How would they like to be in your position??  And also they need to help your body learn how .... with lymphatic massage etc.  Not just send you away to get on with it when it clearly isn't yet figuring it out on it's own.... grrrrr.

 

I'll have to look into that Biotin 5000 stuff as I wish my hair would hurry up and grow out a bit!  But as you say, it is cooler to have short hair in the hot weather.

 

How did your op results meeting go?

 

(Trixielady, Skeg Vegas = Skegness )

 

Susie glad to hear that your T side effects didnt drag on too long.  May it continue to not batter you too hard.

 

Nettie I like the wet flannel look!  Smiley Happy  I'm lucky that my house is old (ish, 1930s) and has thick walls so it stays pretty cool even in really hot weather, and I've mainly stayed indoors this week (either at the ice cold rads hospital or at home), saving my daily walk for about 8.30pm when it had cooled off a bit.  So I've survived the heatwave pretty well. 

 

Daisydi hope those power cuts sort themselves out!  And that you get your dip in the sea soon.  I've also been given the green light to go swimming as soon as I feel ready as long as my skin doesn't break out (actual weeping or peeling etc) which touch wood so far it hasn't.  My gym and pool membership is currently frozen till September but I might put it back in action August 1st and start my swimming again.  Have missed it so!  Breast stroke is supposed to be very good for lymphedema prevention too.

 

And talking of swimming, Sonia that is the loveliest, happiest photo ever!!!  Looks like you thoroughly enjoyed your swim!!    PS happy anniversary Smiley Happy

 

Great to hear you are also nearly at the end of rads.  The time goes quickly doesn't it Smiley Happy

 

Susie....  would it be possible to swim even with your picc line if you wrapped it up super well with something waterproof and then wore a wetsuit over the top??  Although I guess with chemo there is also a general infection risk to consider.  But swimming in the sea is fairly germ free I'd have thought compared to a public pool?

 

Rosina, I have never had notification emails from this forum, I didn't even know you could?  I  have a short cut directly to our Feb group thread on my phone so I can easily check in regularly and see what's new...   and I can promise that I do read all the posts, I'm here at least once or twice a day, even when I don't have the energy to reply.  I can't imagine going through a whole 24 hours now without checking in on my ladies Smiley Happy

 

Sar it's interesting that you don't have to breath hold on your boost week, I still had to.  But then again you had the markup and I didn't.  From what they explained to me it's because my boost was an electron boost and yours was proton.  It's all very science fiction isn't it!  Smiley Very Happy


The boost bit is supposed to be the hardest on your skin as it is more concentrated in one spot.  But I'm happy to report that , touch wood, my skin is still fine , thanks to the Aveeno.  So I'm sure yours will sail through the last week too.

 

Enjoy your weekend in Kent!

 

Very jealous of those of you who got to see the big storm on Wednesday night.  I slept tight through the whole thing!!  I was so annoyed when I woke the next day and facebook was covered in gorgeous lightning photos.  I love a good thunderstorm, me!  Even the cat didn't come looking for comfort, so I assume she slept through it too Smiley Happy   Sorry to hear it upset your dogs though Daisydi and Nettie Smiley Sad

 

MBJ you have rather extensive "grounds" there!  Hope the work is all done quickly and to the satisfaction of the lady of the manor Smiley Wink  Can't wait to see more photos when it is all done.   Love the doggies too Smiley Happy

 

Rosina glad you had a good day at work yesterday.  It really is good how it takes your mind off everything else, isn't it.  Kind of shows how much the cancer stuff has been dominating our lives this year, as a few hours not thinking about it is so refreshing!  Recuperation time at home is obviously good to help out bodies recover, but I sometimes wonder if it has the opposite effect on our minds, too much time to think isn't always a good thing....

 

Thanks for the link to the "garbage warrior homes" thing.  My sister would probably say I already live in one!!! Smiley Very Happy

 

Phew!  That is me caught up.  Only took 2.5 hours Smiley Happy 

 

As for my weekend plans.  I'm going to a local "zine fair" this afternoon.  Zines are kind of home made little comics or magazines , sometimes political, sometimes about music or art etc.  It is the second one they have had but I was too poorly to go last time, so I don't want to miss it again as I know the young girl who has organised it and I don't want her to feel snubbed Smiley Happy

 

And tomorrow I'm hoping to get to Bristol for a street art event if I've got the energy....

 

For those of you who haven't already seen it on Facebook, here is my current sleepy face:20190726_195258-picsay.jpg

 

Hair is starting to emerge Smiley Happy 

 

Love to all I've mentioned and even more to the rest, hope the quiet ones are ok

Sarah x











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Re: February starters 2019 - yes, we rule!

Full documentary

 

Garbage Warrior ( with French subtitles -) shown at the Sundance Film Festival 

Highlighted
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Re: February starters 2019 - yes, we rule!

Hi Everyone,

still no messages coming to my email ( inbox or otherwise) don’t know why so like SusieB I guess I will have to access this group via the website.

Maybe this is a good thing as they were coming to my work email.

Anyway, I went into work today after my rads appointment. I got a fair bit done ( prep for September) and it just so happened that one of my colleagues also came in after lunch ( as I was thinking of going) so I ended up staying more as I am inheriting students from her class and I had missed out on the so called ‘transition ‘ meeting where information gets passed over to the new class teacher. I have to say I actually enjoyed myself as I didn’t think at all about bc.

Got home at around 3.20 pm and did my stretches ( as I hadn’t done them in the morning).

 I have convinced my colleague to sign up for the Jurassic Coast Mighty Hike. 

Have got my 10,000 steps in this evening.

Gorgeous House MBJ, we walked past many a gorgeous house on the Thames path.

 I think my ideal home would be a light house. 

I also like the ‘earthship’ homes made out of car tyres, glass bottles and other recycled items. I first saw them in the film ‘Garbage Warrior ‘ . There is an ‘earthship’ home just outside Brighton ( visited with my students couple of years ago) it is very beautiful.

Well done Sarah with finishing rads, Seasidesar you’re almost there too👍

Enjoy your weekend everyone 🍉

Trailer for the film ‘Garbage Warrior ‘

PS the full film is worth watching , just to see how the ‘establishment ‘ in the profession of Architecture tries to steamroller a creative member of their profession ( in the USA but I would expect here too if somebody came up with good ideas 🤪).

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Trixielady

We should have sold our garden to Persimmon or Redrow instead of building our new house on it! I think they would have put up about 6 houses with tiny gardens 😃, and I would be rich.

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Re: February starters 2019 - yes, we rule!

Daisy, those storms have a lot to answer for but I guess it gives you some respite.

 

Sarah! Great to hear from you, was getting a tad worried. Rads all done, yay! Hope the next 2 weeks are minus complications for you. Enjoy your nap. 

 

MBJ, how exciting to see the work in progress. Cute doggy photos too 😊

 

I've just returned from my 15th zapping. They were running late which is unheard of as I'm usually one of the first people through the door in the morning. No more breath holding next week as I'll be changing over to proton beam radiotherapy for my booster sessions. Woohoo!

 

I'm off to Kent for the weekend as it's my aunt's birthday so I might be offline until  Monday.

 

Have a lovely weekend everyone.

 

Sar xxx

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Re: February starters 2019 - yes, we rule!

MBJ, wow how lovely to have such at lovely large garden and driveway, won't it be lovely if they could do tarmac in a better colour than black or can they?? Xx

MBJ
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Re: February starters 2019 - yes, we rule!

Here are two of the patio areas oh plus Alfie and Tony 🐈 and 🐕.IMG_20190726_175007.jpgAlfie following me around.

 

IMG_20190726_175037.jpgOutside our front door

 

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Girls

Here are some photos of the progress in the garden and drive. Tarmac going down tomorrow, not my first choice I wanted blue slate but told it would go to dust after being driven over numerous times. It's a large area so I suppose the Tarmac will be clean. Chosen my patio tiles they are very pale grey almost white with a little sparkle in the sun. Probably next year's sun but at least it's a start. IMG_20190726_173809.jpg

 

IMG_20190726_173909.jpg

 

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Re: February starters 2019 - yes, we rule!

Hi Implausable, 

 

No apologies required, just happy to know you're ok.  Can't believe you've finished with rads. Where did that time go🕛🕧🕐🕐🕜🕑🕝? Enjoy your nana nap🛌🏾😴😴 xx   

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Re: February starters 2019 - yes, we rule!

Hi all

 

Apologies for being AWOL for a little while.  I've been reading all your posts but just haven't had the energy to join in.

 

I definitely want to reply to everyone properly when I get the time to go back through the posts, but until then, hello!!! And much love to everyone.

 

Very pleased to report that I'm now finished with radiotherapy.  And I can honestly say that it has been no bother, apart from the travelling to and fro.  I've been very lucky with my skin, no redness or soreness at all yet - although I do appreciate that the worst 2 weeks are to come.  Literally the only sign that they have done anything to me at all is that I have a few new freckles in my cleavage, and a kind of tingling feeling like I've caught the sun a bit.  The Aveeno definitely seems to have done its job.

 

I am feeling the fatigue, however, this last week.  And again, that is likely to get worse for a couple of weeks before it gets better, but I can live with a sleepy head and legs that feel like they've been filled with lead for a little longer...

 

I'll get back to you all properly after I've had a little nana nap!

 

Sarah x



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Re: February starters 2019 - yes, we rule!

Due to storms, power cuts etc. etc. my r/t session for today has been cancelled.  Feeling quite relieved to be honest as I am so hot .....

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Re: February starters 2019 - yes, we rule!

More bearable here in Stafford today thank goodness. I can ditch the wet flannel on my head now. Rosina, I have been having trouble with the site too. A few days ago I suddenly realised my email notifications from the forum were going into “junk mail”. I kept marking them as not junk but it still happened. Then today they are appearing in my inbox again. Weird! 

We had the thunder and lightening on Wednesday night. Two terrified dogs. I ended up having to give one of them diazepam (vet prescribed) as she was in such a state. Quiet night last night apart from rain. 

Sonia, I love the pic. You look so happy. I hope everyone has a better, cooler day today. Xxx

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Re: February starters 2019 - yes, we rule!

Hi Susie, its like living in the tropics at the moment. Thought it was meant to be cooler today but it is still HOT.  All my appointments were originally 2pm but when I got there the other day they had changed them all to evening ones to fit in people that obviously need day appts more than I do.  In some ways I think it will be better as I will have the whole day to do stuff, parking will be easier, not so hot and shouldnt be away from house for so long.  If it was dark in the evenings I wouldnt want it but think it should be ok.  Will let you know x

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Re: February starters 2019 - yes, we rule!

Hi Daisydi 

 

We were writing and posting at the same time. Last night's storm sounds pretty bad⛈⛈🌩🌩. Hope you and the dogs have a better night tonight. Will the evening appointments be better for you? I'm wondering if I'll be able to request evening zapping as my hubby will be driving me in every day. If the travelling is too much after going to work he has the option of working from home sometimes. Can't fault the MOD for the support he's getting but as many of them are ex or currently military they work very much as one unit so help each other during difficult times.  xx    

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Re: February starters 2019 - yes, we rule!

Morning everyone 

 

A bit cooler today after yesterday's blistering heat. CT side effects seem to be subsiding since  their peak on Wednesday. Tongue still feels a little swollen and sore so will continue with the mouth wash. Also not getting full flavour experience of coffee, cheese or wine☕🧀🍷☹. We poured some wine from a small bottle into last night's risotto and I drank the rest, less than 1/2 glass☹. So all round CT side effects haven't been as bad as on FEC so perhaps things were worse for many of you as it was given on the back of FEC. Who knows? 

 

Seaside Sar, glad to know your cat is recovering from yesterday's heat. As for how the skin reacts to rads I'll be able to test the theory of daily moisturising as like you I've been doing that for many years too.

 

Rosina, glad you found us again and hopefully caught up with everything. To be honest I only use the website to access our fantastic group.

 

I'll be thinking of all of you who are having rads today, I think there's quite a few of you now. 

 

Have a good day each and every one of you xxxx

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Re: February starters 2019 - yes, we rule!

Morning, well we had the storm from hell last night.  I have never ever seen lightning like it and the wind!  Oh my god.  Needless to say our power was off from about 10-2am, dogs were terrified and it was so so hot.  I have hardly had any sleep.  Got number 3 rads today and then for the next 2 weeks all my appointments are in the evening.  Hopefully will be quicker as the last 3 days I have been out of the house for 4 hours and finding it really hard to keep on top of everything as when I get back about 4.30 Im too tired and hot to do anything.  Skin is ok so far but they said I will probably take a couple of weeks to react if I am going to.  Maybe, just maybe I wont react to this treatment.  That would be so nice.  The review team yesterday said I should have started on the Anastrazole so will have to chase that up but I want a bone scan first to measure my bone density.

Seaside and Sonia you are so nearly there and Sarah you must be having your last one today.  Someone rang the bell yesterday.  Felt very emotional for them.

Speak later x

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Re: February starters 2019 - yes, we rule!

Good morning lovely ladies,

 

Never thought I'd say this but thank goodness it's not sunny today. That was soooo uncomfortable yesterday and last night, I was in a mega grump because of it. Nettienoo, your photo made me smile.  It was impossible to stay cool yesterday. I almost stuck my head in the freezer but then thought of Marlyn when she got her tongue stuck so I changed my mind. I was actually glad to go for my rads because it's lovely and cool in there. Even my poor cat was completely out of sorts due to the heat. She didn't eat or drink all day and looked in such a sorry state this morning. Thankfully I tempted her with some special treat food this morning and she has perked up a bit.

 

So the one day where I could have a lie in because my rads are in the afternoon, and guess what, I'm awake at 6.20am. Typical!

 

Sonia, I'm glad you got to go in the sea, you lucky thing. Must have been lovely. Thanks for the tips on rash vests.

 

Daisy, good to hear your second session went well. Did your skin feel any better this time?

 

Glad to hear you're feeling a bit better, Susie. You're kicking its butt, well done 😊

 

I have got my last breath hold session today and then 5 days of booster next week. The end is in sight. Yay! They said my skin is looking really good and they asked what I've been using. Other than Aveeno in the morning and some aloe vera gel at night, nothing really. Maybe it's down to years of moisturising? Who knows. 

 

Anyway, I hope you all have a good (cool) day.

 

Sar xxx

 

 

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Re: February starters 2019 - yes, we rule!

Morning Everyone,

for some reason your post are not coming into my inbox ( initially I thought everyone had gone quiet because of the heatwave) , when I checked again this morning ( again nothing) I decided to access via the breast cancer care website and then find the February thread.

I have missed lots of posts l😦

Glad that you are all still out there. 

Great photo Sonia28. 

Feeling much happier now, that I have been able to check in .

Rosina

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Re: February starters 2019 - yes, we rule!

Daisy, I tried a scarf on Sunday, I was so hot, it make me really uncomfortable. 

A rash vest usually goes under a wetsuit, but they have a uva factor in some, just been checking them out on mountain warehouse, they have some on sale, I saw a really nice roxy one but it did have the roll neck, they are very fitted but I think It might be my best bet on the beach, I’ve bought a small sun umbrella too, roll on next year XX 

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Re: February starters 2019 - yes, we rule!

Well done Sonia for making it into the sea🌊🌊🏖☺. You look as though you enjoyed the experience. Oh to be without my PICC line☹xxx 

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Re: February starters 2019 - yes, we rule!

Looking cool Nettienoo. xxx 

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Re: February starters 2019 - yes, we rule!

Sonia what's a rash vest and where do I get one.  Im having real trouble trying to keep my neck out of the sun.  A scarf was mentioned but I just cant bear it with the heat

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Re: February starters 2019 - yes, we rule!

2EF27C51-6784-4C8D-B4C0-397301136CBB.jpegI made it into the sea

Well I had another med review after radiotherapy today and asked about sea swimming, she said I could try it, I said I would have wet suit, rash vest and will shower as soon as I leave water. 

Never enjoyed the water so much, jumping waves, well being drowned by waves more like it 😂😂

No soreness yet, showered and dreamed up. 

Also thought my rash vest is good at protecting my neck area from the sun, so am going to get another one, as not sure the sun factor hasn’t been worn out in this one. I’ve only got 3 more rads to go 🎉🎉

 

hope everyone one else is doing okay 😘😘😘

 

 

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Re: February starters 2019 - yes, we rule!

Nettie such a good look but needs must hey?

Just returned from my no 2 rads.  Bit quicker today and I took painkillers before I went in.  Had a review also.  Have got them all discussing about whether to go in the sea or not.  They agreed I could go in as long as moisturised well beforehand kept my skin covered up and showered straight after as the sea water does dry your skin out.  Cant be bothered to go today as its too hot.  Yesterday got back and we had a power cut and today got back put the fan on and it fused the whole house but I thought it was another power cut so now grumpy as too hot and have no fan.  So looking forward to some cooler weather.

Hope everyone is coping ok in this hot weather.  Not the best time to be having rads!

Love to all x

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Re: February starters 2019 - yes, we rule!

45D2C8E9-AF0A-49DB-AD47-7322870C771B.png

 

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Trixielady 

I am still getting issues too Trixielady, mainly under my arm not exactly my arm pit but more where the bra fits sort of extension of the boob area. My reconstructed breast often feels swollen too. I must say it's not the most comfortable of feelings. I think mine must be down to some lymphodema now as my last surgery was December. I am exercising and dry brushing daily, and my friend who is a qualified reflexologist is giving me four days of intensive treatment just for lymphatic drainage. After that I will have weekly sessions. Also thinking of doing aqua aerobics and possibly Tai Chi as I have read that it's really good. Can't do stuff like yoga or pilates as I have had a knee replacement and I am not allowed to kneel on it.

Deano your underarm must be so uncomfortable why don't you try them again and say how much discomfort you are in. I had a drain too but mine blocked after about three days so had to come out. Hope you feel better soon.

I have escaped the workmen and the dust outside my house. Will take some pictures of the progress when I get home. X

 

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Re: February starters 2019 - yes, we rule!

Hi Everyone 

 

Hot and sunny again🌞. I'm feeling much better today. I have a couple of aches and pains in my back and legs but not too bad. A couple of paracetamol soon sorted it. Generally feel better than yesterday, may even take a little walk later so long as it's not too hot.

 

Edinbird, I'm glad to hear that your surgeon has come up with the best case scenario. It's such a shame that she made you feel bad about the questions you asked. No matter what she thought about them they were obviously important to you. I must admit when I go for appointments I go armed with a piece of paper with trigger words on so if something isn't covered I'll ask. Never done that before. As for the armpit scar I was shocked when I first saw it as it was about 3 inches (8cm) long, then logic took hold and in reality when the arm is relaxed it's less than 2 inches (4-5cm) long and well hidden. My scar, although still red is relatively flat and I'm currently happily wearing a sleeveless top.   

 

Daisydi, hope you have a better rads day today. I wonder if I'll have boosters too as I was lumpectomy and full ANC. On the plus side my rads won't be until Oct/Nov so should be much cooler weather.  

 

Have a good day everyone. xxxx

 

 

 

 

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Re: February starters 2019 - yes, we rule!

Hi Deano

 

Glad to hear you managed to get away for a while☺, not such good news about your underarm swelling☹. I can't understand why your nurse was reluctant to carry on draining the site. Where I am it's a case of if it's too uncomfortable give us a call and we'll sort it. They are happy to keep going until your body sorts out what it needs to do. It seems as though each hospital, surgeon, oncologist, etc have their own way if doing things and sometimes it's sheer luck that we are happy with the path they set us on➡️⬆️⬅️⬅️. Hope you receive the news you are hoping for today. Let us know when you feel ready. xx

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Re: February starters 2019 - yes, we rule!

Morning ladies 

Deano I'm pleased you enjoyed your few days away where is Skeg Vegas?? I had a drain in after my lymph node clearance for nearly two weeks can't understand why you don't or why the nurse didn't want to drain it can't they even massage the area so it re routes?? Its really important to try and continue with the exercises although the area is painful I'm 7 months down the line and still having issues so please be careful and push for the right help. Xx

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Re: February starters 2019 - yes, we rule!

Hi All

Well I made it for a few days away in our trailer tent to chapel st Leonard’s near skeg Vegas!!! Back home tomorrow as I have my results from op. My armpit keeps filling up to the size of a grapefruit it’s very sore/ painful/uncomfortable I’ve had it drained twice and they said they won’t keep doing it as my arm pit won’t get better as my body has to deal with it.....don’t know how nurse very snotty with me as they didn’t want to drain it and I can hardly move it to do the excercises but I’m moving it in other ways I’m not looking forward to the roads but can’t see that happening anytime soon with this arm. 

For those in T sorry your all getting side effects I’m just coming out if it now 6 wks in legs are much better still stiff but haviing surgical stockings helped my legs get better maybe you lot can ask for them if your back 

Everyone on rads I’ve heard you talk about aveeno and I’ll deffo buy some if it’s any good keep the top tips coming advantages if short hair in hot weather is better small things grab the positives ladies I’ve also started on iron tabs and biotin 5000 for my hair last 3 weeks and my hair is growing back very quick

Anyway take care and keep updating each other xx❤️❤️ 

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Re: February starters 2019 - yes, we rule!

Thats sort of good news Edinbird.  At least you now have a plan of action.

I had my first rads today.  Took ages.  Was laying on the table for about 45 mins and my shoulders and neck were killing me.  Turns out I am having boosters so I will have 20 sessions.  It was awful in this heat and when I got back took my clothes off and sat in front on the fan  we had a power cut and it has only just come on.  Not looking forward to tomorrow as it will be even hotter.  One saving grace is that the car is air conditioned and so is the unit but it was like walking into an oven when I came out.  Will have to take some pain killers tomorrow.  Oh and I think I can go in the sea unless my skin gets sore.   My knee is too painful to get to my beach though!  I used Aloe Vera Gel straight after the session and then Aveeno when I got home.  She actually said I could use Aveeno before the treatment if I wanted.  Oh and I have to wear a scarf in the sun!  Yippeedoo!

 

PS the skin on my boob is already burning hot.  Is this normal so quickly???? The other boob is cool so its not the weather

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Re: February starters 2019 - yes, we rule!

So the surgeons plans are the best case I was hoping for - a clearance and a scrape round the lump hole for want of a better description! She’s a bit blunt and a little patronising and I felt bad asking the questions I did. The lump turned out to be 19mm and she removed 34mm. The margins are above and below with below the one where there is DCIS so further down into the fuller part of the boob which I guess is the best thing it could be. Op is on 8th and I will need to stay overnight because I’ll have a drain in. It’ll be a bigger scar across my armpit and I’ll need longer to recover so need to see what the doctor signs off on. But that might be me off work until September 😬

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Re: February starters 2019 - yes, we rule!

Rosina, definitely the Jurassic Coast. Not that I'm biased or anything😉, but it is supposed to be a brilliant walk. Interesting fact about babies and I expect many young children having to have GA when having rads. Quite a sobering thought. An ice cream after rads🍦yummy☺. The rate I'm going it'll be mince pies and mulled cider on the way home😃😃🤣xx 

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Re: February starters 2019 - yes, we rule!

Lovely photo of the lake Seasidesar.

How many more rads have you got left.

 I am on  a count down. 18 more to go.  Decided to bus it today. Much better idea as I can move into the shaded seat as required.

Also clocked up some steps walking to the bus stop and back from the town centre (with an ice cream in hand).

Early morning appointment tomorrow (which is what I wanted) the car yesterday was like an oven after sitting in the car park.

Rads are definitely much easier than chemo. Although chatting with the radiologist yesterday she told me that when they have to treat babies with radiotherapy they have to put them under general anaesthetic. I had never, ever thought of this .

 I also showed my Thames Hike medal to the Macmillan cancer bods as I went to hang out there for 45 minutes ( bus timetables meant with arriving an hour early or 10 minutes late). Thinking of signing up for another one next year ( South Coast or Jurassic Coast).

Hang in there everyone especially those going through chemotherapy.

Hugs,

Rosina

 

 

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Re: February starters 2019 - yes, we rule!

SusieB, my chemo brain is in full flow too as I hadn’t realise your post was to me. 😂😂 sorry the SEs are kicking in and making you feel poop. Keep as cool as possible and hydrated. 

Daisydi, Deano,  Edinbird I’m thinking of you all and hoping you are all doing ok today. Xxx

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Re: February starters 2019 - yes, we rule!

Sorry Seaside Sar, addressed last post to Nettienoo instead of you. 

 

Sorry Nettienoo you're probably wondering what the Barry I'm talking about. Chemo brain well and truly established🤔😣😩😩🤤.  

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Re: February starters 2019 - yes, we rule!

Hi Nettienoo 

 

Love the lake. At the moment I'm giving Codosyl a try along with Rosina's sesame oil which, unfortunately, I haven't been able to cope with for the past couple of days☹😩. Maybe tomorrow. 13th zapping. Does that put you over 1/2 way now? Take care Susie xx

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Re: February starters 2019 - yes, we rule!

Afternoon everyone,

 

Phew it's hot!

 

I'm sorry the T effects are hitting you, Susie. Hope they soon barry off. Have you got any mouthwash for your tongue? I used Benzydamine and Gelclair which seemed to offer a bit of protection at least.

 

Had my 13th zapping session this morning and am definitely developing a tanned boob. Shame the other one is so white 😂🤣

 

Took a bike ride around the lake. Lovely and peaceful. Worked out I can do stuff in the morning and then flake by the afternoon.

 

Hope you're all OK and keeping cool, although that seems impossible at the moment.

 

Big hugs

 

Sar xxx

20190724_100415.jpgMy view this morning

 

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Re: February starters 2019 - yes, we rule!

Morning everyone 

 

Hot and warm again in Somerset and I'm feeling 💩💩🤢🤢. T has thrown up it's side effects this morning, although they did start to kick off yesterday dinner time. After looking forward to my home grown beans I couldn't eat them☹. Anyway woke this morning feeling very tired and aching. Paracetamol took ages to work. Just had to take an anti-sickness tablet as now feeling nauseous🤢. Also tongue is starting to look suspiciously white. Chemo just keeps on giving. Also have had to ask hubby to come home from work and take me for my PICC care as I'm definitely not fit to drive🚗. Intend to chill this afternoon.

 

Thanks to all of you who have taken the trouble to get back to me regarding Zoledronic acid and clodronate tablets. I'll ask my onco about them at my next appointment.

 

Hope all of you having rads today get zapped without any delays. It's way too hot to be indoors.

 

Thinking of you both today Edinbird and Deano. Keep us updated when you feel ready.❤❤.

 

Will catch up later with everything and everyone when I'm a bit more 'with it'. xxxxxxxx   

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Re: February starters 2019 - yes, we rule!

Morning ladies

Implausible /SusieB, I was told about hormones at the start but then never heard anything until  late on in chemo my oncologist said we'll talk about them when your well enough and had a rest from treatment so I'm guessing once they see how the rads have gone they'll start you on them, think it all depends on menopause and er + what one you go on. I'm on letrozole and not really sure of side effects due to suffering some from my herceptin injections or chemo possibly although it was stopped in June, most days are still bad with a few good hours unfortunately still not well enough to return to work xx

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Re: February starters 2019 - yes, we rule!

Susie my doc mentioned both the zolewhatsit acid and hormones in passing right at the beginning (back in January), but nobody has said anything about them since.

I next see my onco in September, presume he will start them then.  

Everyone's regime and timings seem very different...

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Re: February starters 2019 - yes, we rule!

Hi Jencat

 

Thanks for popping in to our group, much appreciated. Zoledronic acid hasn't been mentioned at all so I will definitely ask about it when I next see my oncologist.  xx

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Re: February starters 2019 - yes, we rule!

Susie, 

i had zoledronic acid infusion, I’m now due 31st Dec although I am going to change it as day after I felt very flu like, cold then shivering went to bed early and symptoms were all gone in the morning, so would like a few drinks this new year, as hopefully won’t have a chest drain attached. 

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Re: February starters 2019 - yes, we rule!

Susie, I'm from the Oct '17 and like you, TN. My oncologist mentioned Zoldronic Acid to me before I started having chemo. I had infusion of it every other chemo and I go back to the chemo unit every 6mths for it for 3 years. (I've had 3 so far after chemo finished) x

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Re: February starters 2019 - yes, we rule!

Good afternoon,

1 zap down, 19 to go.

Much pleasanter experience than chemo therapy.

The R1 gel was lovely to put on after treatment. 

Last zap is on my birthday on the 19th.😂

Remembered to take a dressing gown with me today, so I borrowed my son’s ( mine is too fluffy and a pain to pack) quite funny to be standing in it and chatting to the medics 🤡

It is actually cold in the zapping room. My car dashboard was reading 32.5 degrees on the drive home.

Walking this evening ⭐️

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Re: February starters 2019 - yes, we rule!

Nettienoo 

 

we we were in Nicosia....with the United Nations, 92. To 94. Lol we also hired the fridge, and washing machine ...it was the thing to do...we visited the sovereign base areas quite a lot, odd to think we overlapped....did you ever go to the fish n chip shop in dekalia? Sp?? I think it was something like cessi's bar??? Xx

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Re: February starters 2019 - yes, we rule!

SusieB, yes indeed yummy. 

Marlyn, forgive me if I have asked this already at some point but when and where were you in Cyprus? We were in Episkopi from 91 to 93.  Those hot summer days were pretty unbearable sometimes. You’ve brought back a memory of a really dodgy fridge freezer we hired from a back street shop in Limassol whilst we were there and used it as a beer and wine fridge. I’m sure it wouldn’t have passed a safety check in this country. 😂 x