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Anyone starting Chemo in December 2018?

Member

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

Hi Sunnydaze- yes chemo finished 🔔 ringing for sure 🔔🔔🔔 still going every 3 weeks for Herceptin and surgery soon then radiotherapy. 

love LB xxx 

Community Champion
Community Champion

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

❤️❤️❤️please be kind to yourselves amazing beautiful ladies ❤️❤️❤️it’s like being in a hurricane during treatment, then suddenly you are spat out the other end and even though the hurricane has gone you are still 🌪trying to make sense of everything, little steps, things do fall back into place, day by day and week by week 😘😘Shi xx

Member

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

Glad to hear you’re on the mend LB. Have you now finished your chemo for definite. Is it a 🛎🔔🛎🔔👀 bell ringing moment? 

Xx

Member

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

Thankyou Kip for sharing this article - it’s almost as if every word was aimed especially at myself - of course we’re all in this and it will mean the same to all of us. I felt cross when I shared some news and then found that person had told other - insensitive people - the explaining I felt obliged to do - i’m In hospital dealing with side effects and yet some people think that I am now ‘on the mend’ I have decided not to answer any more of these.

 

LB XXX

Member

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

Kip, thanks for the article. Very interesting read. I will be taking time and not rushing back to work. 

xx

Member

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

Thank you Kip for posting this article. It’s very true. “Recuperation, convalescence and rehabilitation”. I get that more clearly now.

xx😘

Community Champion
Community Champion

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

Hello ladies,

So sad to hear some of you struggling at the moment.  I found it really was a tough time at the end of chemo, as you say everyone thinks "wonderful its all done now" when actually that's when the toughest time starts.. how do you get back to where you were?   I'm still going slowly, having good days and then days when I can think of nothing else apart from what is every ache and pain I feel etc.   We really have to take it slowly and accept the feelings.  If you can get on a Hope Course, or moving forward course I really really recommend it, I've come away with lots of ways of dealing with the fatigue, the stress etc, of course they don't always work... sometimes you just have to ride it out, but it has shown me I can deal with it better.   The course was actually run by a chap who had had cancer about 12 years ago.. and that was a real positive too.  The very very best piece of advice they gave us all (and they gave us a little card with it printed on to keep with us at all times) was Be Kind to Yourself!   And when you are feeling down or can't do those things you think you should be doing.. ask yourself "If my friend rang me now and said.. I really can't face going shopping/going out/getting up etc" what would you say to them..."Don't worry, rest now and deal with it later"... well be as kind to yourself as you would to others.  We all deserve some kindness.. we've been through a huge amount so we've earned it!!!!

As you reach the end of treatment it may be worth reading this if you haven't already..."After the treatment finishes then what? by Dr Peter Harvey - heres a link..

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

 

This article really sums up how it feels to be on the end of treatment and beyond..

 

Take care ladies, you are all superwomen...be strong and BE KIND TO YOURSELF

Kip

xx

Member

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

Great quote Jayne. We will do our best to reach what is ahead and forget what is behind us.👍👍👍

It’s tough of course it is, but what else can we do? We have to believe we will be cancer free and we will be. A friend of mine who had bc in 2007 was worried about her cancer returning (she’s still cancer free 👍😊❤️ and had an aggressive tumour). She was chatting to her bc nurse about her fears and the nurse showed her a desk card index rammed full of ladies details who had bc. The nurse took massive handfuls of cards and said “I haven’t seen these ladies again, no need, they’re living their lives bc free” . There was just a few cards left of women who had recurrences out of so many cards. This helped my friend to put things in perspective a bit and it’s helped me too. We have to believe we are going to be lucky and statistically we will be. Research is moving on all of the time too and this was 12 years ago. Chin up to the sky ladies and we won’t  be afraid to let those tears out. Better out than in. I take myself for a walk and the tears have been flowing. I think it’s that end of treatment thing. At least from a positive perspective in all of this 💩 is we have a much sharper understanding of what is important in life and  we can choose what we want to do with our time and who we want to share it with. That’s surely got to be an insightful gift. 💝  My friend also practices visualisation, lying in bed imagining the tumour just melting away. She also tells me to have a little mantra to repeat In my head. Something like “I have light, love and healing within me”. Nothing to lose really!

Ha Ha, I’m with you regarding my feelings about returning to work Stuck at 14!!! Btw what do you teach? 

KC72, I woke up this morning too thinking I wanted to take advantage of my free massage. My joints and muscles definitely need it.

Jayne, I love your attitude, not to give a stuff about about what other people think.I am what I am. 🎵

 I do find it so hard not having hair. I look to see if anyone is about before taking the bin outside!!! I avoid neighbours. I hate not having hair, but over the last week I have been holding my head up high ( with my little slouch hat on - I don’t feel happy in  my wig) thinking so what!!  It doesn’t make me a lesser person.

Have a lovely day ladies, be gentle and kind to yourselves. Love to you all

Sunnydaze 💕💕💕💕😘😘😘

 

Member

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

I am not a religious person but I heard this quote from phillipeans 3:13 on radio 2 just now and I thought how well it sums me up right now. Thought I'd share
Good News Translation
Of course, my friends, I really do not think that I have already won it; the one thing I do, however, is to forget what is behind me and do my best to reach what is ahead. 

Member

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

Hi Drummerswiddow 10 cycles WOW no wonder you’re feeling so low 🤗 I was scheduled for 8 but after being hospitalised after the the last 3 - still in and can’t stop feeling low - they have decided enough “good” has been done to shrink the cancer that I can stop the chemo - still going to be having Herceptin. I hope you feel better very soon. Like some of the people you know when I tell people no more chemo- they think I am better - still got to get rid of all these horrible side effects. We can do this massive hugs to all of you LB 🤗🤗🤗🤗

Member

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

Hi stuckat14. Glad you are getting some support through Macmillan helpline. We are here for you too. Best of luck for 10th and reaching that end of chemo milestone. Not long now. 

 

Drummerswidow, your post upset me to think you have hit such a low. Am thinking of you. It’s so rubbish for you, but hope you hit a brighter day/patch soon. One day at a time. Hope you got a good sleep and those dogs of yours are giving you love in the only way dogs can. Mine is such good company, and just her little face lifts me enough some days to make me feel that bit better. Hope you do find the strength to get up to Haven in London for your session. Sometimes it’s those dates on the near horizon that will us forward. Yesterday I thought I’ll take up the offer of a massage at my local Macmillan just to ease my achey bones and have booked one for few weeks time. 

 

Really like it that you Jan ladies have joined us for our chats. 

 

KC72 xx

Member

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

I think people have already said this but, although it's sad to read about drummerswidow and others feeling so low- it's also SO reassuring to know it isn't just me who feels like this sometimes. So thank you all for sharing. When I feel at my worst I've been phoning the Macmillan helpline. They just listen and reassure and offer information that we already know but forget- mainly the fact that there is EVERY chance we will all be looking back at this in 20 years time as the blip in our health that it is. I too cant wait to feel up to getting out and exercising. For me it's the discomfort of wearing anything other than my own hair on my head- and not being warm or brave enough to go out with the baby fluff I'm growing at the mo. One more docetaxol for me on Friday 10th the radiotherapy quite soon after I think. I was reading about a teacher who went back to work for a couple of weeks between chemo and radiotherapy- I'm not up for that 😕 

 

Anyway long ramble, sorry. Hugs! 

Member

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

Glad you’ve had a good sleep, it’s healing, so that’s good.  I think the fatigue is so hard to deal with though. I start the day ok, but seem to need a sleep for about 1hour and a half most days. I’m not surprised you can’t face London just now, it would be a bit full on. As Kip says, baby steps. Hope you’re feeling a bit brighter tomorrow 

xxx

Member

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

Thank you Jayne 1966, Sunnydaze and G for your comments and encouragement. 

 

I seem to have hit an all time low today. Went to bed for 3 hours this afternoon. The dogs loved it! Got up and feel just as tired. Going to the Haven in June after Rads. It’s in London and I’m in Kent. Just can’t face the journey at the moment. 

I’m having an Eeyore day xx

Member

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

Hey Drummerswiddow, please remember that you have gotten through probably the most significant part of your future health and happiness, chemo.  This is just the worst thing and plays havoc in every which way and you have completed this!  I have two more to go and what I wouldn’t give for this to be over, it is just totally gruelling, well done you!!   A final push on the cancer journey to go and then you can focus on regaining your energy etc if you are still being impacted here.  One thing that I have learnt, and am trying to follow, is to be kind to myself.  Also, if you think about it another way,  what would you say to someone else feeling this way having gone through so much, exactly, you would be in total amazement 😊

 

Take care, big hug, G

 

 

Member

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

I’ll second what Jayne says Drummerswidow. It’s not a competition, it’s just about getting back to full health, in our own time and speed. Be gentle, you’ve been through  a lot.

😘😘😘

Sunnydaze xx

Member

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

Drummers widow, 

One day at a time sweetie. Its still early days and you have been through so much. Be true to yourself and bugger what others expect. 

Yes use your local Haven  they are amazing and you can properly spoil yourself with a massage or two and it won't cost a penny. 

Take a deep breath, continue to rest and only do what you feel able to do. 

Xx

Member

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

Hi All. 

 

We’re all a bit up and down at the moment.

 

I’m very jealous of those of you who are managing to exercise. I couldn’t walk down to my neighbours house to do her hens this morning. I had to drive! 😳😳. I’m so tired and breathless when I try to do anything.  I know it’s the chemo but I was hoping to feel better than this. Had my last T last week but I suppose 10 cycles of chemo will take its toll. Not sure I was recovered from my surgery when they started chemo as I had had loads of seroma and an infection following surgery. Had Radiotherapy planning on Monday which made me feel like a lump of meat on a slab! 😢😢. Start Radiotherapy on the 20th May.  Changing my bed this morning knocked it out of me. The lawn needs cutting but I won’t manage that today.  

 

I have tried to do a bit of work as I’m getting short on money but I’m finding it too much. As I finished chemo people are expecting me to ‘normal’ cos that bit of the treatment has finished. If only!!! 

 

I’ve got booked on LGFB but not till June as it’s full up till then. I’m doing the Moving Forward course in September after Rads have finished and I’ve started taking Letrazole. Saw one of the breast cancer nurses last week who suggested going to the Haven to gets some me time etc. 

 

All in all I feel ugly, overweight, short of money, lonely and like **bleep**e! AND I keep crying today. 😔😔😔

 

Sorry to have a major moan. What have we done to deserve this crap? Oh well to tomorrow will hopefully be better. I’m just fed up with trying to be cheerful for everyone. 

Member

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

Yep,

The yoga link “Complete yoga for beginners with Adriene” is fabulous Jayne. I’ve done it twice now and never realised just how stiff my body is. It wakes you up. Sounds like you’re going to be busy!

im just on day 15 and feel like I’ve turned a corner today.... Good luck

Sunnydaze xx

Member

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

Can I be lazy and say ditto to what sunnysaze has put. There is so much on here over the last 2 days to come t on.

Whinni, please gloat  It's great to hear positive news and gives us all something to aim for / hope / happiness that at least one of us is feeling good. Good news from anyone is fab and really helps and inspires me to get up and do stuff. 

Dikat, OMG crusty eyes. I have this too. Stuck shut when I wake up. I do have lots of teeny tiny eyelashes and eydbrow hairs though so feel quite lucky about that.

I have a busy couple of weeks with an eat well course at the Haven on weds, oncologist appt on Thursday, a live well open day at the hospital on Saturday, then my first HP infusion on the 14th and LGFB on the 16th. Slightly nervous about SES from HP as I've really had enough of all that.

I looked at the YouTube yoga link someone posted on here and hope to start doing that from today as a first step forwards. Not sore I'm up to those 5 mile hikes yet 😂😂

I am getting lots of cramps in my calves at the moment. Anyone else had this? 

Also the fatigue seems to hit really quickly now. I feel great and start doing something and then without warning I'm rock bottom and have to get home to bed. A nap later and I'm fine again. Hopefully will improve as still only 9 days post last.chemo. Probably expecting too much. 

Happy Thursday all xx

Member

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

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I couldn’t link this article, but I think it has lots of good ideas to help with detox after chemo/radiation 

Member

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

Hi Wahini

Im glad all is well with you and that you don’t have encapsulation now or in the future. Like you say, you get philosophical about these things and you will deal with it, if and when it happens.

I guess you will be at Raigmore, in an outpatient lodge. You live so far north, I bet you’ve had some good views of the northern lights this winter.😊

I hope the lodge is comfortable for you and you  feel well enough to enjoy Inverness too and it’s great that you won’t need to travel.

Its good to hear you are feeling well. It’s not gloating, it’s just a bit of positive news. I’m trying to feel better, doing yoga,  walking, cycling and hopefully in the next week or so swimming, which is my absolute love and have been unable to go swimming for the last 5 months, which has been tough.

I just want to shake off this drugged feeling, along with the fatigue. I think the more you do, the more you can do, but 5 months of treatment is going to take a while.

Sunnydazexxx

 

Member

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

Hi Sunnydaze, yes it is me staying at the hospital for three weeks. I will not be in a hospital ward but in the patient lodge for outpatients like me who live too far away. So, I can enjoy Inverness while I am there which is quite nice. It is not like the implant will shrivel up or anything, but radiotherapy can encapsulate and internally scar etc., and this can happen months and even years after the rads. This I particularly don't like but I will deal with that if that happens. It doesn't always. 

 

I haven't been on the forum much because i have been back at work for a couple of weeks and also because I feel so good compared to some others on here that I don't want to appear gloating. Next week, before my rads start, I will be going to a trip for a science workshop and then onwards to visit my family who hasn't seen me since the diagnosis and treatments.

 

Enjoy your LGFB course and the excellent goodies. 

Member

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

HGood morning Everyone!

Gosh, so much news! Everything is happening so quickly.

Dikat, sounds like a busy, but successful day. All the wheels are being set in motion for you.😊 Hope you’re feeling ok this morning and haven’t  reacted too badly to your latest  treatment. It’s hardly surprising your bloods were a bit iffy, given what we have been through. Does anyone know any good ways of getting your bloods back up to normal? I guess it’s just a very good diet with lots of fruit and veg and pulses and exercise, getting the blood pumping around that body again.

G, gosh it sounds like you have been through the mill. I hope the next two infusions go well for you and as Shi says, we will ring the bell for you on here. You sound amazingly strong, with your decision to have a prophylactic mastectomy on your other side. You were lucky to be offered the Onco DX testing. No such luck for me. I hope the surgeon guides you wisely as to what your next steps will be. Good luck 🤞❤️

I had a micromet in one node, so didn’t qualify for testing  and because I was on Tamoxifen for a couple of months ( which didn’t shrink the tumour) I believe makes it very difficult to get a true biological reading of the tumour.

My Onc, on first meeting after surgery told me the Tamoxifen was a waste of time and an AI would have done a better job of arresting the tumour until surgery.!!!Thank goodness I didn’t use the surgeon who put me on Tamoxifen at my local hospital. I used an Edinburgh surgeon in the end who was vastly more experienced, but they definitely messed up in the early days and it was all to do with waiting lists, which needs urgent action.

l am looking forward to seeing my Onc, who I trust, and who is very experienced , to see what  my next steps are because I feel quite uncomfortable not having had any testing or not being put down for RT, as yet. I shall see what my Onc says, I at least o trust her.

Wahini, good to hear from you. I hope your implant can be saved during RT and I hope your 3 weeks stay at the hospital is ok( I think that’s you, or maybe it’s Mary Kamille, I get mixed up with this crappy chemo brain)

KC72, wow you live such a long way from me on the lovely south coast. How nice. I love Brighton. I enjoyed watching Location Location last night and it was set in Brighton, the sunny south coast.😊 Yes, I know what you mean about the course, it will probably be very worth while, but a big commitment. Mine would be 6 or 7 sessions I think, but it might be worth it’s weight in gold, helping my “rehabilitation” 😂😂😂 . I will find out more next week when I go on the LGFB course. A wee treat! Looking especially forward to my little goody bag and eyebrows- yes eyebrows again. I e currently got about 20% brows and 50% lashes.

Ok everyone, cyber hug to you all.

sunnydazexx

 

 

 

 

Member

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

Hi LB

I’m sorry you have been stuck in hospital so much, that must have been both rough and inconvenient for you. I hope you are out soon. Glad you’re on the filgrastim jabs again. I know they contribute to joint pain, but better than being neutropenia.  It’s funny how treatments are do different. I wasn’t on filgrastim for FEC, but I was on 10 days worth for T.

Hope you are feeling better soon 

xx

Member

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

Hi DiKat I think that’s part of the problem I had the gsf injection when I was on FEC but not for T. They have started me on them today and already I feel much better. 🤗

Member

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

Sorry to hear you are in hospital LB2 and that you’ve had such a rough time with T. Have you been having Filgrastim throughout? Great news that you don’t have to have any further chemo and that it’s worked so well. Take it easy and concentrate on getting well xx

Member

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

Hi all I haven’t contributed much lately mainly because I keep being admitted to hospital since starting ‘T’ 😟 back in again now - my neatrophiles are 0.004 so on iv antibiotics again. Last cycle got dehydrated 😟 and had 3 days in hospital 😟 I am spending more time in than at home 🥴 the good news for me is that my oncologist is so pleased with the results I f the chemo I have had that I don’t have to have any more - I had 2 more scheduled. Hooray. Still having Herceptin and Pertuzumab. Next step is surgery. I have been following all your news and hugs to all 🤗 LB 

Member

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

Hello everyone. Hope you’ve all had a decent day 😊

 

G - Good luck with your last 2 chemo. Sorry to hear you have to have additional treatment but like Shi says, rads should be easy compared to chemo 🤞 It’s amazing that you can manage a 5k run. Well done you. My head hair is also growing well but eyebrows and eyelashes continue to disappear.

 

Sunnydaze - Great news about the LGFB course, mine is on the 8th. Hope you’re feeling a bit better physically and mentally.

 

LB2 - Glad you’re feeling ok and please don’t feel guilty. The watery eyes are a pain aren’t they! Mine get a little crusty too. Think it’s due to the diminishing eyelashes.

 

Kip - Always lovely and appreciated to have your input. Great news about your mammogram. I will definitely sign up for the local equivalent of the Hope course once I’ve had surgery and rads.

 

Wahini - Hope you’re doing ok. Have you started rads yet?

 

Ive had an exhausting day today. Had pre assessment for op this morning. It’s planned to go ahead on the 16th. Spent whole morning at hospital as had to have bloods, ecg and echocardiogram because I’d been having palpitations during chemo. Good that they’re being thorough! Had to also see the surgeon to sign consent. Because she can’t feel lump, said I would need a wire localisation and WLE. Will also have the blue dye to locate lymph’s and 4 sentinel nodes removed. Should still be a day case. Apparently lots of my bloods are below what they need to be, can’t remember which ones apart from hb which is 106, so mildly anaemic and neutrophils which were 1.26. It’s 3 weeks since my last chemo so that’s pretty rubbish considering I had 7 filgrastim! Home for a quick lunch and then back to chemo suite at hospital for infusion of Herceptin and Pertuzumab. Good job I wasn’t due another chemo with those neuts. Only took about hour and half so not too bad. Only another 14 to go! Felt a bit sickly when I got home but ok now. Funny because I’ve not felt sickly during chemo but this is the first time I’ve not had anti sickness medication or steroids. Was told by nurses I might just feel some aches and pains. My feet and ankles have swollen a bit today, not liking that...think I maybe overdid things at the beginning of the week. It’s just frustrating though, want to feel normal for me...like a 50yr old, not an 80yr old 😞 Have to remember, small steps.

Love and hugs to all 💕

 

 

 

Member

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

LB2 so pleased that you’re feeling good after your last chemo and managing work. Don’t feel guilty at all! 

 

G - not long to go now. Like you I did 4EC and 4Tax. No rads for me but Tamoxifen beckons, starting next week. 

 

Kip great news re clear mammo one year on. Met the oncologist again Monday and my first post cancer mammo will be September. Hope you continue to do ok. 

 

Sunnydaze  - fab you got on the LGFB  course. Really hope it gives you that boost you need. Not sure if all goody bags are same but I got this green primer cream and it’s brill at toning down the face redness so used it to combat facial flushing of steroids. And will come in damn handy with all this menopausal flushing!

 

I looked into the moving forward course. Thanks for the tip Sunnydaze. Not sure whether to go soon while all emotions still fresh or wait a bit and see where my heads at later. My nearest courses are Guildford, Worthing or Brighton. They all are 3 hr sessions over 4 consecutive weeks.  

 

All you ladies prepping for rads good luck 😊thinking of you xx

 

KC72 

Member

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

Wow ladies thank you for your wonderful

insights!!

 

Shi thank u so much for the radio info, really useful.  They haven’t mentioned about boosters but I will talk to them here thank u!  

 

Sunnydaze that is really good news re the LGFB course, I did it in Feb and was really nice and the products are a really lovely treat, enjoy it!!! As for my chemo, yes 8 full strength rounds, 4 EC and 4 Tax....mentally the last one was hard as I know a lot of people have 6 and I just kept thinking I could be done.  I am okay with this now, got my head around it and all done by end of May so not too too long to wait now 🤞

 

Hi LB2, I assume tamoxifen beckons quite quickly then, I was hoping to regain my body a little before pumping in another drug but I guess that isn’t likely.  

 

I have been trying to exercise, runs and a few classes on my two better weeks of the 3 week cycle and managed a 5k run yesterday, albeit slower than I used to but still did it which after chemo number 6 I am thankful for as mentally that gives me a boost that I still have a say in how my body works, although physically I am still putting weight on etc, I am eating differently, not badly but I am eating different foods due to what I can tolerate so that is also not helping.  On a positive note I am starting to get some hair growth (cold cap didn’t work for me) but eyebrows and eyelashes dropping now.  Did people shave their head again after chemo to help hair growth or anything? 

 

Hi Wahini, sorry to hear you have this extra pressure re recon.  I had planned to have immediate implant too but my surgeon in the end didn’t want to so we agreed on a tissue expander.  It was meant to be being filled by now with a view to having an implant after the summer however this can’t happen now due to radio and so I won’t be able to have recon until next year which has upset me somewhat as I wanted the physical stuff all done and dusted.  I am seeing the surgeon this week to discuss my ‘good boob’ as I want this gone too. Wish me luck here as I haven’t had genetic testing (not been approved yet and probably won’t as no family history and I am 42 so young but not really young and ER positive) but I want it gone.  I have a really high chance of local and distant recurrence (oncotype Dx test confirmed) hence the chemo and now radio and I just need it gone. 

 

Anyway, thanks for welcoming me back ladies, big hugs xxxx

 

 

Community Champion
Community Champion

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

Kip 👍👍great news clear mammo 😘😘all just take things at your own pace and go on courses etc that suit you, our journeys are ours and as bc shows we are all different. You will find your ‘normals’ again, it’s just your ‘ new’ ‘normal’ and you get there in your own time ❤️❤️💕💕Shi xx

Member

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

Hi G, similar to you I had failed lumpectomy and then mastectomy and now radiotherapy which I first thought would be of no benefit. Because of this I had immediate reconstruction with implant. Now the reconstruction can be compromised by the radiotherapy. I thought about not having radiotherapy for this reason but now I want to lower my recurrence rate because I never want to go through this again! Did you have a reconstruction yet? About the cream, my team said they will give me something to use.

Member

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

Hi Kip

Thanks for all of this honest  and helpful info. Sorry it’s been tough for you too, but thanks for sharing, it definitely helps.

It’s me that’s going on the LGFB course and I think Dikat is too. I’m looking forward to it, my self confidence is rock  bottom, so hopefully that will help. 😊The six week course you are talking about is very much like the one that Maggies offers, only its called” Where Now”. After reading your post, I think I will book myself on it, a wee bit of self care, will be good for me I think. So thanks for the nudge.

That’s fantastic news that your first mammo is clear Kip and that you are slowly and surely going in the right direction. I’m pleased to hear that, but like you say it’s a far from easy journey.👍😘

LB2, you shouldn’t feel guilty, it’s great that you’re feeling as well as you do and just getting on with it. Long may it continue ❤️ and good luck as you start work again.

Sunnydaze xx

 

 

Community Champion
Community Champion

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

Hello ladies,

Just caught up on your latest posts and good to hear you are all drawing to an end of the chemo.  I also saw a lot of you are feeling the strange "end of treatment" feeling.  It seems to be completely normal, I've finished active treatment at the end of December and am now on 10 yrs of Tamoxifen, have just had first "clear" mammogram since diagnosis which was 1 year ago on 11th April and its a funny old feeling.   I thought I would be feeling so positive and full of beans and actually some days have been tougher than when undergoing chemo.. .in different ways.   But I have been on a course run by MacMillan (called "Hope") which is how to deal with end of treatment and moving forward and I would highly recommended it.  It was great to meet other people feeling exactly the same and over 6 weeks we discussed different topics, dealing with tiredness, fear of reoccurrence, fitness, healthy eating, sleeping etc and I found it really helpful.  If you can get on a course definitely do it.   I'm sure as time goes on these things become easier to deal with but its tricky some days.   I never expected it to take so long to feel "normal" again.. whatever that is, but I am on my way, losing some of the excess weight I gained, getting out walking and swimming and growing hair!!!   Side effects of Tamoxifen I wasn't expecting but that too I am getting used to...and its ok.  

I think one of you mentioned you are doing the LGFB course.. I did that too and it was incredible.. great freebies and useful tips.. eyebrows were the big thing everyone wanted to know about.  I was mid chemo at the time and no eyebrows or eyelashes at the time and she gave me some great tips.   Anything to help you feel better has to be worth it.

Take care everyone...small steps..

Kip

x

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

Thanks Shi for the great radiotherapy tips, I start in 10 days time. 

 

G - I am about to start taking Anastrozole for 10 years, I was advised to start taking them when I start radiotherapy so about 1 month after end of chemo. Then meet with oncologist in July to see how I am tolerating the side effects, just one more thing to worry about.

 

I am feeling a bit guilty reading how a lot of you are struggling after last chemo, I am now in week 3 and feel OK, back at work (from home) this week. Out and about next week, I work part time which helps.  If I do anything too strenuous I feel a bit weak and out of puff. And the watery eyes are a pain.

 

Enough hair has grown back to cover my bald patch (I cold capped so kept some hair but it is very thin). But if I put what is left up in a clip I can leave the house without a head-band for the first time in months. Small steps back to feeling "normal" again.

 

Hope you all continue to improve as you face the next challenge be it surgery or rads x 

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

Harrrumph!  I  typed out a long message to everyone this morning and the blooming think never posted. Anyway, I hope you’re all doing alright, it does indeed seem that every one is in the same boat re; low mood and moving on.Big hugs girls 😘

I got a little bit of good news today.  Maggies  Centre  ( like The Haven) in Edinburgh have had a cancellation on the LGFB course and I have been offered a place on the 7th May. Is this the same day as you Dikat? I’m delighted. I might finally learn how to do eyebrows. I’m looking forward to using that eyebrow pencil Stuck at 14!!! Although you’ve set a high bar with your makeup application. 😊

Really lovely to hear from you again G. I hope you are managing ok. Gosh, you poor thing having 8 rounds of chemo. Is that because the doses have been spread out over 8 instead of 6 or are you just getting more chemo?  That sounds tough. I’m sorry I can’t help you with rads because I don’t know my own situation yet, until I see my onc. 

Kitkat, I hope you’re feeling a bit better about your forthcoming surgery. You will find your inner strength again. Surgery is easier than chemo and it is good to know that the tumour has gone. Are you going for an immediate reconstruction too?  

KC72, I hear ya! Yep, I do feel exactly the same too. Looks like you have an understanding husband and a lovely doggy too. I spoke to a lady at Maggies today, she called me to tell me about the LGFB course. She said it’s so normal to feel the way we do . She recommended a “moving on course “and I may well do it. I have a lot of confidence rebuilding as well as stamina to work on as I go forward, especially if I have to return to work in August. 

Jayne,  I know what you mean about wanting to get started. The mind is willing, but the flesh is weak. I’ve just overdone it with the old Fitbit over the last three days and here  I am tonight typing this message lying on my bed absolutely knackered. I think I had better take it easy tomorrow- day 14.

Well love to all, hope you’re all ok.

Sunnydaze xxx

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

Hi g 😘😘well done you 💪💪💪💪8 chemos, we’ll all be ready to celebrate with you when you finish, just let us know. For rads, it’s easy Peasy lemon squeeze, promise. Wear loose tops and get air to skin as much as you can, get a gentle vest top to wear, gentler on skin, you can’t have any creams or deodorant when you go for rads each day before hand but after slap the cream in, keep one in handbag at all times too as well as one in the fridge for use at home. I found dr organics tea tree and aloe Vera gel the best one for me and the dr organics aloe Vera and calendula and witch hazel one, others have used moo goo, e45 and Avenida, think it’s a case of try and see what suits you best.keep drinking plenty of water during rads and pace yourself and sleep when body tells you too. Push for 15 rads and 5 boosters if you can, they can only give you rads to that area the once, so make sure they throw the kitchen sink at it. Hope that helps 😘😘💕💕Shi xx

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

Hi everyone, I haven’t been on here in a while and hadn’t realised we had moved to December 🙄 (I usually get the emails when things are posted and obviously I wasn’t so apologies for not being up to speed with everything!).  Amazing to see the progress and movement in everyone’s treatment.  I know there are many ups and downs but my goodness things are moving quite quick when you step away and pop back.  

 

I unfortunately am having 8 chemos and still have two more T to go, well done to all the ladies who have finished!  I have also now got to have radio too which after my failed lumpectomy and then the mastectomy we didn’t think I would need but they have since changed their mind so starting that two weeks after chemo (go for my CT thing on the same day as my last chemo). What did/are you ladies doing to prep your skin for radio? 

I have the 10 year tamoxifen pill popping too as I am 100% ER positive...when are you/did you start this? Was it straight after chemo or radio??

 

cheers everyone, G xxxx

 

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

Jayne 1966

 

Thank you. Hope you are not suffering too much. SEs seem to be worse this time. Is it because I want to be a bit more normal. I think I am doing too much too soon. It’s easy to slip back into not putting yourself first! xxx

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

Drummers widow, 

Lovely to hear from you. Please do keep in touch.

My last chemo was the same day as you and the time can not go fast enough to get past these blasted SEs

 

Is everyone finished chemo now ? 


@Drummerswidow wrote:

Hi All.

 

Hope you don’t mind me ‘dipping’ back in! 

Glad people are getting further treatment sorted. Diktat pleased you’re being given both drugs.  I have been tattooed today. It’s a 37 mile round trip every day for 3 weeks from 20th May.

 

 I have been struggling after my last chemo last Tuesday. Seem to be affected by de and a very low mood. Feeling very tired and irritable. Diktat I envy you being able to walk so far. I couldn’t manage a few yards at the weekend. Got a constant back ache as well. If it doesn’t go soon I’ll have to go to the drs to check no urinary infection.


 

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

❤️❤️❤️😘😘😘❤️❤️❤️❤️beautiful amazing ladies, bit of this is me on the jukebox from the greatest showman for you all 💪💪💪💪💪drummers widow, please get yourself checked in case it’s a uti, your immune systems take a bit of time to get back to full 💪after finishing chemo 💕💕Shi xx

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

Well I am sorry that you are all struggling, but glad it’s not just me. Dikat I am in awe of that walk, just the thought of it is exhausting, well done. Nearly three weeks since last chemo and still feeling wiped out but know I need to build stamina for mx and anc in two weeks. Also been weepy as I have  realised that I am not ready emotionally to have surgery, not that I have a choice as with so much of what we have been through these last few months. Again I know the low mood is down to the T but knowing it doesn’t help does it. 

Yes you are right, my friends and family are all celebrating chemo being over and seem to expect me to quickly recover and be me again but it seems a long way off. But as they say tomorrow is another day - onwards and upwards girls, this too will end. I hope!! Hugs (and less cliches) to all xx

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

Hi kc72

Just having a hot Epsom salts bath for my aches and pains. That’ll teach me for being cocky 😆

I hope the tearfulness lifts soon but if it doesn’t just have a bloody good cry and cuddle that dog. Your positivity will see you through, I’m sure.

I do get the impression that some friends/relatives kind of think you can just brush yourself off and carry on as normal at the end of this. It’s cliche but if you haven’t been through it, you really don’t get it!

Sending you positivity and hugs 🤗 

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

Lovely to hear from you Drummerswidow

Sorry you are feeling low. It’s still earl days after your treatment so sure things will improve. Things are moving fast with your rads planning. Good idea to get things checked re your back but if it’s any consolation, I have lower back pain too. Keep thinking mine is related to IBS as things still not right in that department although there is some improvement. Guessing we will worry about every ache and pain from now on. Sending hugs 🤗 

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

Hi Jayne

Hopefully you will start to feel better in the next few days. Think you having that extra T has probably made it harder for you. I think the low mood thing gets worse each time. I told myself I wasn’t going to get down on the last one because of knowing that part was over but it doesn’t seem to work like that does it!

You will get chance to exercise and eat healthily soon but you just need to concentrate on getting this 💩 out of your system and your upcoming surgery. Big hugs 🤗😘

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

Jayne1966 and Drummerswidow sorry to hear you too are feeling low. We are not a happy bunch right now are we? 

 

Sending you both a virtual hug x

 

KC72

Member

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

Dikat. Wow well done on the 5.5 miles. I know it’s hard sometimes to make ourselves get out there and walk or exercise but sore thighs aside hope you feel better for it. Good news too you have the next part of your treatment plan sorted. 

 

Sunnydaze, you poor thing with the worry over the weekend re lump. Pleased you got it sorted so quick and that it’s ‘only’ a cyst. Glad the bluebells gave you a lift in your walk today. 

 

Sunnydaze, we we seem to be on a similar path right now. Friends and family want me to be celebrating end of chemo. While of course I’m thankful that bit is over with the next 10 years on hormone tabs/ ovarian suppression if needed it just doesn’t feel like the end of it. I think my husband wants me to be happy that I’ve only got to take tablets but I still feel it’s a big deal and it’s going to be a daily reminder.  I am a positive person and sure this is just an end of chemo feeling but I don’t feel like jumping for joy and am a bit prone to tears last few days.  Just need to buck up, cuddle the dog and think about getting on with it and getting back to work full time after 9 months out. That’ll give me something else to focus on! 

 

Hope everyone else is bearing up, I missed you all over the weekend. 

 

KC72 xx

 

 

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

Hi All.

 

Hope you don’t mind me ‘dipping’ back in! 

Glad people are getting further treatment sorted. Diktat pleased you’re being given both drugs.  I have been tattooed today. It’s a 37 mile round trip every day for 3 weeks from 20th May.

 

 I have been struggling after my last chemo last Tuesday. Seem to be affected by de and a very low mood. Feeling very tired and irritable. Diktat I envy you being able to walk so far. I couldn’t manage a few yards at the weekend. Got a constant back ache as well. If it doesn’t go soon I’ll have to go to the drs to check no urinary infection.

Member

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

Dikat & Sunnydaze,

 

Well done you two for the exercise. I'm on day 6 after last chemo today and feel really low. I can't wait to have the energy / motivation to do anything. The time is going so slowly this round, I think because I'm waiting for it to end and to start to feel better.

I was up for about 2 hours around 2am looking at healthy foods and recipes on line. I really want to get going on it but its too soon yet. 

Pleased everything went well today DiKat, I should have my first infusion the same as you, 2 weeks tomorrow, I have 18 of them in total every 3 weeks, plus the hormone thing for 10 years. Still feels like a long road, but get the next week out of the way and it all must start to improve ??? Everything still seems to be happening so quickly that it is tough to adjust emotionally to anything. I don;t know if the infusions will mean I can continue to take the time off work or not. I'd really like to stay off. I feel like I've had 6 months stolen from me and the family and I really have no interest in going back. Maybe its the post chemo emotions playing up. Right now I feel like having a good cry and screaming "when will it all be over ?"