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May 2017 chemo starters

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Re: May 2017 chemo starters

Jay - in our area they are setting up support/well being clinics for people moving forward after treatment instead of the Moving Forward courses. Might be something worth attending in the New Year.  Saw it on the hospital website.

 

treehouse - you should maybe check to see if you're anaemic, my hb is taking ages to return to pre-chemo levels. It's good enough now for surgery but still not what it was before.

 

My op will take 8 - 10 hours eeek!!!! They will do physio on me while I'm asleep as I'll be in one position for so long.  I've  read the leaflets now so need to go and buy a few things as will be in for possibly 5 days as it's bilateral mastectomies and DIEP flap.

 

It's basically just an excuse to buy lots of new things and distract myself from next week.

 

 

 

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Re: May 2017 chemo starters

Heather/Mai, I completely agree, this diagnosis has definitely made me see that things need to change. I was very stressed and almost desperate for a break after a very difficult 18 months. Although I've worked from home, I am ready to go back to the office but want to make sure I don't fall into the same trap of long hours and housework/ sorting dinner.

 

My children are adults but I was still running everything as if I was still part time and they were unable to get the dinner. This changed on chemo and I want to make sure it stays this way.

 

 

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Re: May 2017 chemo starters

Mai, the counsellor said that life is now plan B not A. Were we really happy with plan A before or has breast cancer made us slow down, rethink our lives and make it better. I have often found it hard to ask for help, in the house we have now shared out jobs, the boys are helping more and if I can't manage to get things done then it really doesn't matter. It is a chance to hit the reset button and make a few changes to make us feel better.

 

I feel going back to work earlier will help me sleep, to push the negative thoughts away. On the days I have been busy I have slept so well, on the days I just potter around I am awake for hours. I have loved being at home with boys since March though but it is time to slowly get back out there.

 

H

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Re: May 2017 chemo starters

Heather, I think you have the right idea, getting back into work is the best way to get back into it, just ease in gently and don't do more than you can cope wth. We have each other here for support but we need to engage with the real world again too. I've been thinking about your moving forward course and how you were all discussing embracing your new selves and I do wonder if we should be embracing what we have gained rather than what we have lost, like the chance to see my kids graduate etc. These are the things I feel are worth embracing and the losses are what make it a possibility. There is such a lot to reflect upon and it's so multi faceted that it will take time to process. πŸ’—

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Re: May 2017 chemo starters

Sorry Daffodil just noticed you done by 20th Dec too!!!
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Re: May 2017 chemo starters

Really pleased you have your dates for Radiotherapy really pleased for you and your family Feb is a long time away and like you say you have always been at appointments whenever the school holidays have happened so enjoy your bc treatment free Christmas you deserve it!!
I'm hoping my letter should arrive so as I had my initial meet with radiotherapy doc on Monday to discuss treatment
I don't think il be done for Xmas but I didn't start with appointments till late March πŸ’–
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Re: May 2017 chemo starters

Heather - I think your idea of returning to work just slightly earlier and with limited hours would be a great idea and will offer just enough distraction for the time being - go for it!! xx
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Re: May 2017 chemo starters

My dentist said not to use mouth wash straight after brushing as you wash off the toothpaste. I have booked a dental check up and hygienist for end on Nov.

 

Thinking of going back to work a month earlier than planned. Maybe just 3 hrs on a Weds morning in Dec and use up holiday for other days. I think I need some kind of distraction to help me get back into it. 

 

❀ Heather

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Re: May 2017 chemo starters

We'll have to share our experiences Daffodil - I assume we don't live within the same health authority and end up literally side by side like I did with Rosie on the Chemo suite..!!!!
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Re: May 2017 chemo starters

Mai - I should have given a warning about swapping sides of the bed with other half! - I had to swop sides to allow my drain to hang freely and I'm still on that side 7 weeks on....!  Appears Hubby likes my side of the bed better than his own...!! 

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Re: May 2017 chemo starters

Asked nurse at my flush about plaque. She said she used to use corsodyl twice a day and it made her teeth yellow. I wonder if it's the effect of the corsodyl killing bacteria in the plaque. She said it did all scrape off so it's not actually staining the teeth. I'm viewing it as a temporary measure. I'd rather have a sore free mouth and deal with staining after the chemo. Are we advised not to go to dental hygienist? I'm worried they might nick the gum. I'm going to ask onc next week. Incidentally, while I was googling I found this... "don't use mouthwash straight after brushing your teeth. Choose a separate time, such as after lunch. And don't eat or drink for 30 minutes after using a fluoride mouthwash." It wasn't chemo related but useful info.
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Re: May 2017 chemo starters

Jay, it sounds like we will be going through our radiotherapy at the same time. My CT planning is next Thursday and I will get all my dates then. But they assure me I will be finished by 20th December as we are off to Italy to our daughter for Christmas.

Phase 3, then Christmas!

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Re: May 2017 chemo starters

Afternoon ladies, looks like we are all hobbling along!  I've had my Mum with me today making me cups of green tea so I don't have to lift the kettle! I got up around 10.30am and have been sitting most of the day to avoid filling my drain bottles. I've output about 60ml in 24hrs so no way will the DN take these off yet. They have to be outputting less than 30ml in 24 hours for that to happen or 7 days post op, whichever is first.  I had a reasonable nights sleep but felt weird sleeping on my back. My partner and I still managed to share the bed but swapped sides so I could have the drain on the left side and we put a couple of cushions between us so he would roll into them and not me. It seemed to work ok. I had my heart shaped cushion in my armpit to stop my arm pressing hard against my body.

 

With regard to to the teeth cleaning, whilst using a soft toothbrush - dental wood sticks are very good as long as you are very careful and don't scrape them against your gum. They are angular at one end and taper to a point at the other (not cocktail stick shaped) so you can use them as a toothpick or as a gentle scale and polish. 

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Re: May 2017 chemo starters

Good news Jay πŸ˜˜πŸ‘
I just walked from the post office to the car and had to stop. Even my mother with her knee replacement had to wait for me!!!
I think I need to see GP and get checked out. I may be anemic. There is tired and then there is no stamina total exhaustion.
When will we ever feel normal?
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Re: May 2017 chemo starters

So, in the post this morning arrived the next lot of appointments!  HOORAY!

 

I've got rads plannning/CT next Monday and will have first rads on Wed 29th - finishing on 19th December - which is just before the schools break up for Christmas, which means I won't loose any of the build up to Christmas time away from my Son - YIPPPEEE!! 

 

it'll be the first school holiday since February where Mum isn't disapppearing to a Hospital appointment at some point.....!! 

 

I'm so delighted!  

 

It does, however, mean I now have 3 hospital appointments next week!

 

It does mean that Wolfee and her sister can now celebrate their birthday without me intruding!! 

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Re: May 2017 chemo starters

Mishy, 😘😘😘get onto the help line to see what they say just to be on safe side sweety. Hope you get on ok. Daffodil thank you for tips yesterday too. Think those of us going onto t next month are feeling a bit 😳😳😳😳at the thought of going onto That to be honest. πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Morning everyone feeling like πŸ’© today this ear infection has really made me feel like rubbish my temp was quite low last night at 35.9 today it's 36 but the minute I take my dressing gown off it goes down again x hospital yesterday when I rang were happy enough that doc had given me antibiotics but I feel Rotten x going to ring the helpline again this morning more for advice x
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Re: May 2017 chemo starters

Hi buddy I know what you mean soft toothbrushes are not great. I would use my electric once in a while on a good week. I also flossed gently.
I hated the furry mouth feeling
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Re: May 2017 chemo starters

Plaque buster. Ladies have you got any tips for getting rid of tooth plaque? Since using a soft toothbrush I've got a build up. I'm using corsodyl twice a day, which I hate and aquafresh toothpaste.
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Re: May 2017 chemo starters

Ok Shi will heed the advice x
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Re: May 2017 chemo starters

Trisha and mai, agree with treehouse about keeping on top of pain killers, they told me to see the course through even if not in pain as it’s easier to keep it at bay rather than try and control it once it starts. πŸ’•πŸ’•πŸ’•πŸ˜˜πŸ˜˜shi xx
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Re: May 2017 chemo starters

Hi Treehouse. Not had any painkillers since 630pm and slept quite well but been awake now since 3 am. Feel fine. Bit tired. Plan a walk to town. its a mile and half there and back. Have a library book to collect and its market day and want another Thinsulate beanie hat. got a pink one last week Β£3! Thoight treat myself to another colour and get some gloves and xmas cards. Meant ti stay dry and can get a cuppa tea whilst Im there. Have a good day xx
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Re: May 2017 chemo starters

Morning all.
How are you doing Mai and Trish?
It’s still early days so take it easy and keep on top of the painkillers.

Rosie we understand and will be here when you are ready. I think my op was a bit over 3 hours. How long are you expecting?
I like Mai took a while to wake up.
I think I finally read the leaflets the night before but remember some advice was saying to stop some meds a week early. Luckily I wasn’t taking anything but might be worth checking early.
Much love πŸ’•
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Re: May 2017 chemo starters

Glad to see you're both home Mai and Trish. Another hurdle jumped.

 

treehouse - glad you're finally feeling better and that surgeon was happy with new boobs!

 

Hope your ear infection clears up soon Missy, there's nothing worse.

 

Moving Forward course sounds good Heather, thanks for the update.

 

I'm just about to enter the "head firmly in sand" zone as s*****y is a week today. I want to have the mastectomies but worried about the length of the op. I feel so well at the moment it's annoying that I've got to go backwards.  I have been meaning to read all the pre op leaflets I've been given but always seem to find something else I need to do ha ha. I will have to make myself read them at some point.

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Re: May 2017 chemo starters

Hey buddy fan when I start my rads I'm having boosts too apparently it's for people under a certain age or mine is because I'm 46, TN and I didn't have a full node clearance πŸ€”πŸ€” yeah my ear is killing me but never mind glad I went to docs and got it checked! It wasn't too bad in the summer having chemo but now where in the colds and bugs season it's a nightmare literally everyone has colds! The bloody doctor had a cold who I saw for my ear so I will probably have that by next week 😠 I feel like getting myself an air tight bubble to put myself in hahaha at least it's my last one I really feel for the others who have got more to go how the hell do you avoid catching things?
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Re: May 2017 chemo starters

We must celebrate each mile stone!!

I know Treehouse - I'm sure she got it wrong! - it's on my list to ask next time I see someone! I'd worked it out to be over June - and same as you - our Son is away with school the week after last injection and I was planning for me and Hubby to go away for a couple of nights - but I'm now holding off until I've had it confirmed......
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Re: May 2017 chemo starters

Curly we celebrate every mile stone πŸ’ƒ but I know what you mean .

Jay whoa wait! Why so long on herceptin? I hope to be done by June. I have booked a holiday in Aug.πŸ™
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Re: May 2017 chemo starters

Me too Treehouse - I could easily go to bed right now! Just had a lovely long soak in the bath with epsom salts with a little dash of radox bubbles.
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Re: May 2017 chemo starters

Sorry to hear you have an ear infection Mishy - hope it improves quickly on the antibiotics - I sympathise with anyone with ear infections - my poor boy suffered terribly when he was younger - had 3 lots of grommits!
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Re: May 2017 chemo starters

Well done curlyh on passing the end of rads - that's another step finished.  I know what you mean with regard to not being at the end - I've got herceptin injection at the hospital every 3 weeks until at least next June although the onc said until next September when I saw her this week?!  

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Re: May 2017 chemo starters

Wolfee, I am having rads plus a possible boost (what's that?) but I don't know the details yet. I'm really worried about lymphodema as the other arm is paralysed so I only have the one working arm.
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Re: May 2017 chemo starters

Oh bless you Mishy. Hope you feel better soon. I really feel for all ladies having Chemo as the colds are about. Sending hugs. I felt terrible going to the breast clinic today with my bugs. I made sure I sat far away from everyone.

Heather sounds like a worthwhile day. Such a shame about the drive.
I am at the point where I want to go to bed before the kids!
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Re: May 2017 chemo starters

Heather that sounds really good I think I might get. myself in one of those courses I think I need it!
Had pain in my ear since last night got worse today went to GP turns out I have a nasty ear infection so more antibiotics rang alert line just to check on GPS advice that they didn't want to see me as I only had chemo last Wed but they are fine just got to ring if symptoms don't clear up or I get a temp or any worse
Hope mai you feeling OK after your op and everything went well for you today Trisha this chemo is the gift that keeps on giving I thought I would get a break seeing it's my last one 😝
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Re: May 2017 chemo starters

Second Moving Forward session today. First bit was talking about how unique each person's cancer is, like a fingerprint so each will have their own unique treatment plan. Explained about ongoing fatigue, can last upon 2 years. Also reminded to do monthly check boobs etc as before.

 

This was followed by a group session with a psychologist discussing who we are now and how to move on and accept that we have been dealt a bad hand but to get to grips with who are are now. Lots of tears in the room but good to share and see we all think the same.

 

Hope you are all ok,  love to all

 

❀ Heather

 

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Re: May 2017 chemo starters

Well done Curly, there are reasons for you to celebrate as you have completed the big treatments and the rest is ongoing mantenance.  I am also ER+ 8/8 but have only had Tamoxifen mentioned so far.  I will discuss all options with Oncolgust in my next appt, pre rads.  I am still considered premenopausal as I'm 48.

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Re: May 2017 chemo starters

Well done Trisha rest and recover...glad you are home and resting Mai take it slowly...healing takes time...good your cold is improving Treehouse..

 

I had last rads yesterday...skin a bit pink, op arm a bit uncomfortable and feeling tired today...was a bit emotional but don’t feel I am at the end ..

 

Is any other er + ladies having zoladex injections to shut down ovaries I have to start those and also have zometa infusions twice a year so it will be ongoing...take care all x

 

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Re: May 2017 chemo starters

Hang in there Mai. I have found post surgery recovery quite hard. it has been 4 weeks of painkillers and very slow progress. (On chemo I would have had a good week by now) the cold from hell completely floored me to be honest too.
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Re: May 2017 chemo starters

Well done Trisha, I can't believe how well you coped with the anaesthetic. My experience of anaesthetic is always followed by vomiting and even more sleep. After an hour and a half of surgery it took them 2 hours to wake me up in the recover room before I could be taken into the ward! I have no recollection of this! πŸ˜‚ Glad this is now over for you and you can focus on recovery. X

Jay, well done on going into work! πŸ’ͺ🏼

Shi, the Clarytin mentioned is "Loratadine" which can be purchased under any brand name.

ive been asleep on the sofa for the last 2 hours or so!  Not very good at this being ill thing, not sure what to do! I guess that is kind of the point: don't DO anything! πŸ€”

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Re: May 2017 chemo starters

Well done for work Jay πŸ’ͺ🏻. I am so in awe of those of you working even from home. My brain is mush I am useless. Wolfee how are you getting on? Have you cut your hours now your boss is back?
How is your sister? When is she planning on returning to work?
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Re: May 2017 chemo starters

Mai and Trisha, well done. Hope your recovery is rapid.

Treehouse, pleased you are recovering.

Shi, Clarityn really does help with T side effects.

Well done Jay for getting back into work.

I hope everyone else is doing well.

Have a good day.

xx

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Re: May 2017 chemo starters

Treehouse - I'm so pleased to hear your cold is improving and that you've been generous and passed it on!

So pleased to hear all are happy with your bilateral mastectomy boobs and more importantly I'm pleased to hear that you are feeling happier.

Indeed I'm sure we all feel the same about the amazing NHS - fantastic service and staff when you really DO need them.
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Re: May 2017 chemo starters

Wow - that's amazing Trisha - so pleased you've had it done and are safely back home. Enjoy the duvet day and enjoy being really lazy for a couple of days more - 20/11 seems a long time away?
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Re: May 2017 chemo starters

I survived my 2 hour working day!! and what wonderful news to return to, Mai is back home - YAY!  Welcome home and welcome back on here!  You will soon get used to the new "YOU" - embrace it and feel proud - that's my motto! 

 

Sorry - the lasagne was my priority!  but the focaccia was good too - enough left to have with pasta tomorrow!  By way anymore veggie dishes you or indeed anyone wishes to share, I'd be extremely grateful.  Anyone got any receipes involving kale - I usually simply steam it or bake it in oven making it crispy.

 

Shi - there is no set way to deal with the side effects of T - each of us is different when it comes down to it - it's really a case of wait and see how you feel and seek advice from others if necessary.  Any concerns should be asked of the onc who is the person most qualified to give advice.  Of course, having been through it, us May ladies have lots of hints and tips to assist but it's best to wait and see how your own body copes and not worry too much about it.

 

 

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Re: May 2017 chemo starters

Well done Trish! You rock. Rest up and spoil yourself for a few days x
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Re: May 2017 chemo starters

Budsyfan, thank you that’s reassured me a little. Will you be having any radiation on your arm nodes area? Xx
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Re: May 2017 chemo starters

All went well ladies. Was in anaesthetic room by 9 in recovery by 10 and got home 1.45pm. In pjs eating dough balls. feel fine just sleepy. Duvet day xx Big hugs to all of you. Post Op appt 20th Nov x
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Re: May 2017 chemo starters

Treehouse, glad your check up went well and everything looking ok 😘thank you for the tips for t. Mai, very happy to see you Home and glad everything on the mend😘😘love shi xx
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Re: May 2017 chemo starters

Thanks Treehouse, I am comfortable and have one drain. I didn't see the surgeon afterwards but the registrar visited to check on me. I assume the full discussion will happen on results day. They seem happy that it's all starting to heal well. X

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Re: May 2017 chemo starters

Welcome home Mai. Hope you are comfortable. Do you have any drains? Is the surgeon happy?
Gently hugs x
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Re: May 2017 chemo starters

Morning Ladies! What's left of me is now back home! Good god, how do we keep surviving this crap!  πŸ’© Slowly adjusting to the new me. πŸ€• Thanks for your good wishes and I'm very thankful to be moving forward in this triathlon. 2 down 1 to go! πŸ’‰βœ”οΈ πŸ”ͺβœ”οΈ πŸ”₯

best wishes Trisha for your second surgery. πŸ’—

Jay, you never mentioned the focaccia! That sounds yummy!

Treehouse, hope you are soon feeling better. Glad your consultant scanned you and confirmed he is happy with everything.

Rosie, glad you had a nice outing with friends before your surgery.

I'll catch up on posts properly now I'm back on my iPad.