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Anyone starting Chemo in December 2018?

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Re: w, Re: Anyone starting Chemo in December 2018?

Just had my letter for first radiotherapy appointment (ct scan) and it sent me into a bit of a spin- I hadnt considered the possibility of a scan and what it could show....does anyone know exactly what it's for? Brings back all the staging scan anxiety and in the middle of bone pains it's even worse! 

Having said that I'm so grateful as always for these threads reminding me that all these up and down feelings are normal:-)

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Re: w, Re: Anyone starting Chemo in December 2018?

I'm 22 days post-chemo and start rads on Monday for 3 weeks

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Re: w, Re: Anyone starting Chemo in December 2018?

Helloooo.. I've found you all.. was getting worried the January chemo starters page was extremely quiet... wondered what had happened!

Kip

x

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Re: w, Re: Anyone starting Chemo in December 2018?

Oh you’ll rock it Jayne. I’m sure. Xx

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Re: w, Re: Anyone starting Chemo in December 2018?


@DiKat wrote:

That’s good news Jayne. I’m so pleased for you and great you get to keep your own nipples 😊 Have you still got to have 3 wkly Herceptin? X


Yes dikat every 3 weeks for HP for a year. Only pain is having to keep the PICC line in all that time. Going to look lush on the beach in October half term lol. 

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Re: w, Re: Anyone starting Chemo in December 2018?

Brilliant kc72, another one finished - may your se’s be mild and quickly resolve👏👏

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Re: w, Re: Anyone starting Chemo in December 2018?

Wayhey😊😊 🔔🔔🔔🔔 Ding dong. The bells are ringing out for ya, KC72. 

Glad you’ve had a good response to chemo too Kitkat ❤️

Seems  everyone is  saying that they have also struggled with the last one, makes  you realise you’re not on your own .

Big hugs everyone xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Ringing that bell for you kc72 🔔🔔🔔 well done.

It has been great how we have all supported each other on these forums 💕

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Re: w, Re: Anyone starting Chemo in December 2018?

Love that song, good choice so thank you x

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Re: w, Re: Anyone starting Chemo in December 2018?

🛎🛎🛎🛎🛎💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💃🏻🛎🛎🛎🛎🛎yehhhhh kc’s 💪💪🥊🥊🥊🥊though 😁😁😁😁 bit of breakout by swing out sister on the jukebox for you 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻😘😘💕💕Shi xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Kitkat18

Fantastic news that you’ve had a good response to chemo. I’m pleased your taste is improving, mine is too slowly. It is great to know we won’t be getting dosed again. Cheers 🥂 to you. Keep us updated how you go with surgery, think there’s a few of us having it at similar times xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi DiKat

Just popped in from the Feb group to say a huge thank you for sharing your after FEC and after T photos. I've just completed 4 rounds of FEC (I'm on a trial) prior to surgery and have cold capped. I've got some hair left, but not much, and hoping to have some regrowth soon. Your after T photo has given me hope that my hair may continue to grow during T after my op. 

All the Best, Susie  xxxx

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Re: w, Re: Anyone starting Chemo in December 2018?

Ring a ding ding ladies 🔔🔔🔔

no bell at hospital so ringing it here!

 

Not been home long from hospital and feeling hugely emotional, but know when I wake in the morning it’s going to be a good feeling. But right now but of a sobbing mess - wasn’t expecting to feel so tearful 😭

 

But as all you wonderful ladies say onwards and upwards. Forum has been great for support and tips and advice. Thank you too Shi for your wise words and encouragement. 

 

Right now am sending lots of thank you texts to friends and family, but sincerely a big thank you to you all for being there - it’s made a real positive difference. 💕💕

 

KC72 xx

 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Stuck at 14, have you tried difflam, paracetamol and ice lollies?

Well saw the surgeon today and he can’t feel anything and says I have had a really good response to chemo. However I am still facing mx and anc mid may, discussions re recon are ongoing.  But that there is a small chance now that I no longer need rads. I am ER+ and asked about ovary removal versus 10 years of drugs but once menopausal, which I am, it still needs to be the drugs as the body finds other ways of making oestrogen apparently🤬

This last T has been a rough one and seemed never ending but two weeks on I am finally picking up but still get breathless and also had the low mood which is (I have just learned this week) another known SE of T. Wish I’d known that 3 months ago as I have had leaky eye syndrome in the middle week of each cycle. Anyway my taste is back if still a little salty and the numbness in my hands and feet is improving though the nails are lifting and not fit to be seen, so life is returning.

Doesn’t it feel great to know we won’t be getting dosed again and that we will soon be feeling better...

just hope I get eyelashes back soon cos the tree pollen means even leakier eyes😭🤧

Here’s to a happier healthier, if sun protected,  summer🥂xx

 

 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Stuck at 14

ive had oral thrush every round. Fluconazole tablets are what you need. They are stronger than the drops. Also stop using the difflam mouth wash and just use bicarb dissolved in a pint of cool boiled water. Use this mouth wash throughout the day. My onc told me to do this, she told me the  green coloured mouth wash could often make things worse. Once I stopped the green mouth wash my throat was not more sore anymore and thrush better. Maybe worth considering...good luck

Ahh thanks for your kind words Shi, those are good suggestions.😘

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Re: w, Re: Anyone starting Chemo in December 2018?

I am also finding it harder to bounce back after last T treatment. Still a bit achey and no energy on day 11. I thought it might have been due to having a busy Easter weekend. The forum is great, so good to know others are experiencing the same. So sorry for those of you who have stomach problems and thrush to deal with as well, that is just not fair. 

 

Roll on the good days, surely not long now until we all feel "normal", X

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Re: w, Re: Anyone starting Chemo in December 2018?

Stuck at 14, slosh with some difflam, are you taking the fluconzole too? I got oral thrush every round 🙄 dikat speak to your unit about guts, Karana on my thread struggled for a bit after chemo but things did settle down 😘😘sunnydaze ❤️❤️Finishing chemo is such a relief that all these emotions you didn’t know you’d suppressed can surprise you, it is part of the journey but do not forget your Macmillan is there for a coffee and a biscuit and there are usually some kind of yoga or exercise classes and reflexology things too you could sign up for if you didn’t already know about these 💕💕Shi xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi stuck at 14

Sorry you are suffering. When I had oral thrush, the nurses told me that the nystatin drops were a waste of time and needed to have fluconazole prescribed. Is that what you have? X

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Re: w, Re: Anyone starting Chemo in December 2018?

Agh oral thrush sore throat. I'm sure I'm overdosing on the nystatin drops. Taking one fluoxygig a day but what else can I do to stop the discomfort? Any tips? Easter egg doesnt seem to be working either!

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Re: w, Re: Anyone starting Chemo in December 2018?

That’s good to know Pastamissus. Glad you’re finally feeling better. How many weeks post chemo are you now?

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Re: w, Re: Anyone starting Chemo in December 2018?

I found my last T took me 14 days to get brain properly back and get over the tiredness, it was much worse and lasted much longer than previous cycles. I now have a fully-functioning brain and am not having afternoon naps (although not doing anything very energetic) so it does get better, it just feels like it never will!

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Re: w, Re: Anyone starting Chemo in December 2018?

That’s good news Jayne. I’m so pleased for you and great you get to keep your own nipples 😊 Have you still got to have 3 wkly Herceptin? X

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Re: w, Re: Anyone starting Chemo in December 2018?

Dikat, they say no rads unless the investigation of breast tissue removed shows anything up. I'm very relieved tbh

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Re: w, Re: Anyone starting Chemo in December 2018?

Ahh thanks for your kind words Dikat. They made me smile and there is comfort in knowing we are all in the same s****y boat!!!!

Yes, my mood will pass, just as the bad weather blows through, so will my mood. I think it’s a combination of wanting desperately to get on with life again, but also realising it’s going to take a while yet. It’s still only day 8 and secondly I think you begin to process what you have been through and it’s been tough. I cried buckets at diagnosis, but have been pretty strong throughout all of the surgery and treatment. There are definitely better days for us all.

I am sorry to hear you have still bowel issues, I have problems with my feet. I really don’t think it’s PN, neither does my onc. I think,  like you said, chemo finds your weaknesses and digs in. Let’s hope these grumbles clear up and that they don’t become long term side effects.

Go cat I am sorry you are still feeling breathless, I hope that passes soon. I’m glad your onc isn’t too concerned about the module on your lung, that bodes well. Fingers crossed that everything will go well for you. Scanxiety is horrid.

And Jayne- great you’ve got a surgery date too. You know, it’s great you can save your nipples. I am perfectly happy with my reconstruction. The anxiety beforehand was harder. It’s great waking up with boobs, it’s like you never lost them and you’ll have a great pair of perky ones. 😜 You’ll be in that bikini before you know it! I’m going to Spain in October and my goal is to be “ beach ready” and gorgeous by then😊

Sunnydaze 😎

 

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Re: w, Re: Anyone starting Chemo in December 2018?

That’s brilliant news Jayne...and just one night in hospital isn’t too bad. Does this mean you won’t need rads? 💕😘

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Re: w, Re: Anyone starting Chemo in December 2018?

2 weeks since my last chemo and I still get breathless when walking on the flat.  Have to stop every now and then when walking the dog.  But as soon as I stop the breathlessness goes.  Really strange.

Got a CT scan, in a weeks time, to check up on a lung nodule that I have.  Onc doesnt seem that worried about it and says they are common.

Then will see onc 3 weeks after that for result and to discuss whats next.  No RT for me as had it in that same area 10 years ago.   And no hormone tabs as Im Triple negative.  

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Re: w, Re: Anyone starting Chemo in December 2018?

Just seen my surgeon. Booked in for double mastectomy and implant recon on 21st May. Should be able to keep my nipples which is nice. One night in hospital and then around 6 week recovery after that. All moving on quickly but a holiday at the end of August looks like it may actually happen now. 

Been reading all posts and will look at some of the exercise stuff once last chemo side effects have started to pass, and they are not really here yet so have that to look forwards to at the Weekend. Seems like we are all on the up slowly but surely and its great to read about us thinking of other things than chemo.

Live you all ❤️❤️❤️

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Re: w, Re: Anyone starting Chemo in December 2018?

Another few days and hopefully it will pass Sunnydaze. It was strange, I had low mood for a couple of days with this one and shed a few tears, something I hadn’t done even at diagnosis. Then I got annoyed with myself thinking why am I feeling down when I’ve finished chemo! I think there was a bit of anxiety for me also. On one hand pleased to not have to have these horrid drugs and on the other hand worried that I wouldn’t be having any more of these drugs that have been blasting my cancer cells! In general, I feel much better now, tired and still some bowel issues but I think that’s because it’s a weak area for me and the chemo has probably taken its toll. Just trying to muster up the enthusiasm to go for a little walk, not so appealing now it’s dull and cooler. You go easy on yourself and rest when you need to and look forward to feeling better over the next few days 💕xxx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Dikat,

I feel like a pile of 💩. My body has no get up and go. Low mood. I think I over did it yesterday. I was on here chatting a lot and did a load of cooking. I enjoy cooking, it takes my mind of everything. 

I am definitely finding this last one a struggle in terms of body weariness.  I want to shake it off, but can’t!

What about you Dikat you must be a good 15 days or so since your last chemo. Do you feel normal yet? I hope so.

X

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Re: w, Re: Anyone starting Chemo in December 2018?

How are you feeling today Sunnydaze, any better? Xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Thanks for this info KC72 Much appreciated. I can now go well armed when I see my onc on the 10th May. Glad you got the endopredict test. It was never even mentioned to me. 

Yes, my onc muttered about zoladex too,  but like you it depends on my menopausal status. My periods stopped half way through chemo, so who knows. I think the zoladex. won’t be very pleasant and I’m hoping I don’t need the injections, but I’d rather give injections a go first of all and see how I get on rather than just “whipping my ovaries out” !

Loads of luck for the last chemo today KC72, it’s a lovely feeling knowing that you’ve finished. It’s certainly felt never ending and definitely torturous at times.

Hurray another finisher xxx👍👍🔔💕

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi absolutelyannie

I wasn’t given the full dimensions like you. Just told it was 26mm to start with and approx 8mm after 5 chemo - 3fec, 2 taxotere/Herceptin/Pertuzumab. Now I’ve had 6th & final chemo, hopefully it’s shrunk a little further. I’ve got to have 15 more of the targeted therapies Herceptin & Pertuzumab. They are by IV infusion every 3 weeks so will still need cannulating. 

I guess you having radiotherapy will be a good thing, something else to throw at it xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Thanks Sunnydaze and Dikat for your well wishes for my last chemo session tomorrow 😊

 

sunnydaze you asked about my treatment. I had sentinel nodes out first (1 affected) so I then had an axillary clearance same time as mastectomy and recon. No other nodes affected so was always told no need for me to have rads as nothing to blast. Chemo was the surprise treatment as on the endopredict score I am high risk of recurrence. 

 

I started tamoxifen before chemo for a month, and there was talk of either zoladex or the doc said ‘whipping my ovaries out’. Not sure I want to go down that route. But with chemo stopping my periods guess we will need to work out where I am on the whole menopause journey. I see the doc on 7th May. 

 

KC72 xx

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Re: w, Re: Anyone starting Chemo in December 2018?

DiKat

I asked for more of EC the original drugs which were fairly knocking the stuffing out of the tumor.  Have been told that I have had the max of EC (which I dont believe as I had only 4 sessions). The original plan was chemo, surgery followed by Taxane . that appears to be altered now as when I saw the surgeon he said 3/4 weeks radiotherapy after surgery.

Hope there is no more chemo.  I have been told no more chemo so will kick off if it is mentioned again.  NO NO NO MORE CHEMO FOR ME 

At some point i will start Letrozole and Zometa.  What were the measurements of your lump. 

PS as far as they can tell it has not spread to lymph nodes but a biopsy will be done during surgery. 

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Re: w, Re: Anyone starting Chemo in December 2018?

Get yourselves some fitbits and then set up groups like a work week hustle then a weekend warrior together, it helps 👭👭you help each other step by step 😁😁excuse the pun, it gives you all a good 😂🤣😂🤣😂if someone has a sneaky shop and then uploads their steps and they find they’ve done 12,000 without realising 😂🤣😂🤣glad you are keeping chemo thread as home thread while you bounce off to rads and ops, our oct17 thread did the same and we celebrated when everyone had finished ❤️❤️After sharing the chemo journey together it was natural to 👭👭👭through the lot 💕💕Shi xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Like you’ve said previously, it is a shame they didn’t pick up on that sooner so they could have reverted back to FEC. Could they give more FEC after surgery? X

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Re: w, Re: Anyone starting Chemo in December 2018?

It is now 23mm x 15mm x 24mm.  after the first 4 ec sessions it had shrunk to 19mm x 17mm x 12mm. It seems it was a waste of time having 3 sessions of Docetaxel

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi absolutely annie

Yes, it does seem we are following a similar path. Do you know what size your lump is now? Guessing it’s quite small if still on track for lumpectomy. Hope you get some answers from your oncologist. Keep us posted xx

 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

 

It is the darcey bussell pilates for life DVD. 11.99 on Amazon. It's also found its way onto YouTube so you can catch it there. I do the warm up, mini programme and warm down normally, takes about am hour.

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Re: w, Re: Anyone starting Chemo in December 2018?

It’s tough when your kids are wee normally, so goodness knows what it’s like to deal with bc and small people.

my kids are at school.

Good luck with the exercise,  as Dikat says, start small. Was the DB Pilates on line, do you have a link?

x

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Re: w, Re: Anyone starting Chemo in December 2018?

Dikat

your hospital must be following the same protocols as mine.  I saw my surgeon on 3rd April and we discussed lumpectomy.  although my chemo has been stopped I now have my surgery on 16th May - still appears to be lumpectomy but have another final meeting with surgeon on 8th May.  

I will be querying with my oncologist on Monday next the incidence of Docetaxel not working.  I had 3 sessions before it was found not to be of any benefit to me and stopped.  was glad to be finished with chemo. 

I have been told Radiotherapy for 3/4 weeks within 4 to 6 weeks of surgery.  It seems we are half way there now Dikat so hope all goes well for you.  My hair is growing back but yours looks great.  

Mary Kamille 

Hope you are ok - haven't seen anything from you for a while.  

Sunny Daze Drummerswidow

Have you both finished chemo and what are your next steps.  

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Thank you for the link and the reassurances! I actually did Darcy Bussell's pilates warm up this morning and then watched the kids do the rest! (Day 7) To.orrow I'm going to aim for a short around the block and see how many steps that is to start me off. 🙂 

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Re: w, Re: Anyone starting Chemo in December 2018?

here is the yoga 🧘‍♀️ link for anyone interested.https://youtu.be/BPK9WNtpBgk

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Stuckat14

No, I definitely haven’t been walking the whole cycle....in the whole of last week I only did 11622 steps, on a couple of those days, didn’t either hit 1000 so don’t be hard on yourself. I’ve managed 22555 across 3 days this week but this is wk 3. Tbh I’ve not done very much at all for the first 2 weeks of every cycle. I feel like I’ve got to push myself because of my upcoming surgery and my bum and legs definitely need toning up from all of this sitting around. Just set yourself a count that you feel is achievable and increase it gradually. I was surprised how much my thighs ached from lack of use, it was a good ache however, different to the aches we get with all this 💩 xx

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Re: w, Re: Anyone starting Chemo in December 2018?

 

Hi Pastamissus,

My friend who had bc at the age of 39 and now 51, with no recurrence so far ❤️ had her ovaries taken out and she told me the other day, if given a choice she would not do it again. It plays havoc with your joints, has effected her  sex life and menopause earlier in life has been tough. Of course everyone is different, but definitely worth thinking about very carefully.

Stuck at 14, I am usually rubbish for the first seven days and then I make myself walk, start small and build up. I have walked between 1 and 2 hours a day  throughout my chemo cycles( after day 7,) some days I just make

myself do it. Ok, i tell myself I’m going to walk to the bridge today etc and it is a struggle, but I have ALWAYS felt better for it. However, my last cycle has floored me a bit and haven’t been out today, ( day 7) I also got an electric mountain bike for my 50th birthday in Feb and I love it! I also live very rurally, so not much else to do , so walking and  is good for me. Keeps me sane🤪

I think McMillan offer free  active/fit courses too, no idea if they are suitable.  There is a lady on YouTube “yoga with Adrienne”  - a lot of bc ladies rave about her  and you don’t have to leave the house! I keep meaning to try it out.

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Re: w, Re: Anyone starting Chemo in December 2018?

You walkers are inspiring me! Do you walk through the whole cycle Dikat? I'm pretty chuffed if I make it down the garden or get the dishwasher loaded on some days. Friends and family say I'm bound to more active than I think because of the kids- which might be true but on the days I'm alone, in the week after chemo I can be VERY stationary. So im going to set a little target to get me going...very little. Any suggestions? I feel so weak. 


@pastasmissus wrote:

Starting radio on Monday for 3 weeks with deep inspiration as left side. Also start zoladex and exemestane in 2 weeks, was offered that or tamoxifen, but was told slightly better outcome with zoladex/examestane but more prone to side effects, so will see how things go. Getting the injections on a monthly basis is going to be a pain when I'm back at work, as I'm away 1 week in 4 (and not on a regular pattern). Hoping to get my ovaries out instead, but waiting to hear from gynae.

Starting to feel human again and taste slowly coming back to normal. Haribo jelly babies taste good, even if chocolate is still odd!



@pastasmissus wrote:

Starting radio on Monday for 3 weeks with deep inspiration as left side. Also start zoladex and exemestane in 2 weeks, was offered that or tamoxifen, but was told slightly better outcome with zoladex/examestane but more prone to side effects, so will see how things go. Getting the injections on a monthly basis is going to be a pain when I'm back at work, as I'm away 1 week in 4 (and not on a regular pattern). Hoping to get my ovaries out instead, but waiting to hear from gynae.

Starting to feel human again and taste slowly coming back to normal. Haribo jelly babies taste good, even if chocolate is still odd!


 

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Re: w, Re: Anyone starting Chemo in December 2018?

Starting radio on Monday for 3 weeks with deep inspiration as left side. Also start zoladex and exemestane in 2 weeks, was offered that or tamoxifen, but was told slightly better outcome with zoladex/examestane but more prone to side effects, so will see how things go. Getting the injections on a monthly basis is going to be a pain when I'm back at work, as I'm away 1 week in 4 (and not on a regular pattern). Hoping to get my ovaries out instead, but waiting to hear from gynae.

Starting to feel human again and taste slowly coming back to normal. Haribo jelly babies taste good, even if chocolate is still odd!

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Re: w, Re: Anyone starting Chemo in December 2018?

My chemo unit gave me these contact details for insurance www.tif-plc.co.uk

Tel 08456582999

x

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Re: w, Re: Anyone starting Chemo in December 2018?

Great news about the flights Dikat! Now you wouldn’t get that with Ryanair 🤣🤣🤣 Btw can anyone recommend insurance, I know we will now get fleeced...

Funnily enough, I tried today to get myself on a LGFB course. Massive demand, but now on cancellation list, fingers crossed for 7May course. I I want that eyebrow pencil! Stuck at 14 motivated me to get my make up sorted for the Summer ❤️ I want to feel lovely again.

Sunnydazexx

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Wow, what amazing brave women Sunnydaze 😁