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May 2019 Start

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Re: May 2019 Start

Hi, 

 

Yes, me too. My treatment ended at the end of October - so i wasn't expecting to still be vulnerable. I'm going to adhere to it as much as possible, but not be too over anxious about. I'm pretty sure its just to be on the safe side that we are on the list.

Mangomum xxx

 

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Re: May 2019 Start

Good to know we are all getting these. I don’t think it’s anything too sinister- we’re just logged into the system. I’m sure we’re already being v careful and our experience last year means we’re used to being on hold - let’s be positive- I am sure Rose that your treatment will continue- you have been so strong and an inspiration. Keep strong everyone!

Dezee xxx

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Re: May 2019 Start

Hi all

Yes I got the extremely vulnerable letter too. I'm still having 3 weekly targeted treatments ( Herceptin and Perjeta) which can cause neutropenia so I'm presuming it's because of this. Luckily I haven't had any problems with my full blood counts so far so I'm hoping my immune system is doing ok!! The letter sent me into a bit of a panic staying in for 12 weeks sounds awful after missing out on so much of last year but at least everyone else is in for at least the next 3 as well! I'm trying to keep a bit of distance from the kids and cleaning like mad. My hands are are sore from all the washing. The only thing I'm not doing is sleeping in a separate bed as it seemed really unfair to banish my husband to an air bed in the dining room for 12 weeks. My next treatment is due tomorrow so hoping it goes ahead. Good luck to everyone in these difficult times

Love Rose x

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Re: May 2019 Start

Hi Dezee, I got a text yesterday to say I am extremely vulnerable which really scared me as I wasn't expecting it.  However, I'm a member of a couple of breast cancer groups on Facebook and it seems like loads of people got it who are not in active treatment.  I've since seen this which has put my mind at rest a little.  Hope it helps xx

 

https://digital.nhs.uk/news-and-events/latest-news/statement-on-coronavirus-communications

 

That said, if your husband is considered extremely vulnerable it might be good for you not to have to go to work, especially if your work are supportive.

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Re: May 2019 Start

Dear all

thank you for all your lovely messages. We are all better prepared for putting life on hold after treatment last year. Just wondering if anyone else got the NHS at risk letter today. I was expecting my husband to get one as his is bone marrow cancer but I got it today, 4 sides worth. I had gone back to work but my school were very supportive before the schools closed. But it does state in the letter that it is effectively a sick note and you should not be asked to go into work. I thought as I had finished treatment my immunity would be back to normal? 
Keep strong everyone! 
Dezee xxx

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Re: May 2019 Start

Dezee

Ive just read your post. I am so sorry to hear about your husband. It must be so hard for you all to have to go through this again. This is such a terrible disease but you have done it once and can do it again even though you might not always believe it.  

Sending love and prayers

Rose x

 

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Re: May 2019 Start

Hi ladies, 

 

It’s good to hear from you all again. However, Dezee, I am so sorry that you are having to face this dreadful disease again with your husband. Life just isn’t fair but you need to be strong for him, as he was for you....

 

Just as I was beginning to believe that I could start living normally again, Coronavirus struck and my life is once again β€œon hold”. We had booked and paid for two holidays abroad and both will have to be cancelled. Life is now limited for us all and I am telling my friends that they are now getting a taster of what  life is like when you are on chemotherapy!! 

I am feeling very well. I am exercising a lot and until last week, was busy!! I suppose that my chemo walks will be back as my daily activity because the gym closed this weekend! I am coping well with the Letrozole and I had my 2nd Zolondronic acid infusion on Friday. I was expecting the worst this weekend, as the first time the side effects were awful. However, this time I have been ok!! This has been a very pleasant surprise!! 

Stay well throughout this very surreal time so that we can again celebrate the fact that normal living has resumed!! 

SP

xx

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Re: May 2019 Start

Oh my goodness Dezee, I'm so sorry to hear that.  Will be thinking of you xx

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Re: May 2019 Start

Hi Dezee, 

My heart goes out to you and your family. Such worrying times with the virus. Keep safe and keep in touch. Still here to lend an ear / support.

I hope they can keep the treatment going in the safest possible way. 

 

Mangomum xx

 

 

 

 

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Re: May 2019 Start

Oh Dezee

 

i am so sorry to read your news. It is such a worrying time. Sending lots of love and virtual hugs πŸ€— πŸ€— 

 

Xxxxx

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Re: May 2019 Start

Hello May 2019 ladies

Lovely to hear from you all again. Great to hear some good news about your mammogram in these difficult times Mangomum.

The world feels so weird at the moment but people are pulling together and hopefully we will all be looking back on this soon and moving on with our lives as we were starting to do after last years treatments and surgery.

I think I may be put in the vulnerable category who needs to self isolate for 12 weeks as I'm still having targeted therapy which can affect the immune system the thought of keeping a distance from family and not even being able to go out for a walk is hard but will have to be done! At least I'm able to work from home which will fill in the time a bit! 

Take care everyone 

Keep in touch 

Love Rose x

 

 

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Re: May 2019 Start

Hi Mangomum and all the other lovely ladies from last May. I finished radiotherapy on 19th May but unfortunately a week before the end my husband discovered from a blood test that  his bone marrow was working properly and was diagnosed with a rare form of non-Hodgkins lymphoma called mantle cell lymphoma on 5th March. By all accounts a more aggressive treatment than for breast cancer so unfortunately life hasn’t returned to normal and we have had to tell our girls for the second time in a year that a parent has cancer. He had his first chemo last Tuesday but is on the at risk group. We had already self isolated and live in a very rural area but are now waiting to hear from the NHS as to what will happen with treatment. Life never got back to normal and my husband has been my rock during the last year, but this is clearly a whole different level. πŸ™πŸ™πŸ™

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Re: May 2019 Start

Good afternoon everyone 

 

It is so lovely to hear from the group again...thank you. 

I hope you are all finding your way forward. I am so thankful and grateful it’s not this time last year. 

sending lots of love to you all

 

😘😘😘

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Re: May 2019 Start

Hi Mangomum and all the May 2019 ladies.  Nice to hear from you and great news about your mammogram.

 

Happy Mother's Day and best wishes to anyone finding today hard.  Honestly, it's not been the Mother's Day I'd hoped for after last year's but I guess it could be worse.  I really feel for those people who are just starting their treatment.  It's a scary enough time as it is without the added worry of coronavirus.  And all when life seemed like it might be getting back to some kind of normality ☹

 

Looking on the bright side, we all know what it's like to have life on hold for a few months so I guess we will all muddle through as best we can.

 

Lots of love to all

Bananabrain

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Re: May 2019 Start

Hi Lovely May 2019 ladies, 

 

Happy Mothers Day to you all and hoping you are all finding the road back from treatment a smooth one.

 

I have been left with some neuropathy in my fingers and toes but managing it well. I had my first Mammogram on my right breast ( left masectomy) and had the letter yesterday to say all clear.

 

I still get anxious and tearful sometimes when i allow myself to think about a reaccurance or spread, especially on days like today - thinking my girls may not always have me. I try to make every day count and not take anything for granted now so that's been a positive and so grateful we have come so far with treatment that we are here to live this day.

 

My heart goes out to all who are not only facing treatment but the uncertainty of the Coronavirus. 

 

Stay safe lovely ladies.

Another possible few months of keeping germs at bay / isolation - who'd have thought it!! We survived it before and we will again 😘

 

Mangomum xx

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Re: May 2019 Start

Hi lovely May ladies

 

It's heartening to hear how well people are doing after a rough year (to say the very least!). Christmas is such a special time of year and more so after what we've all been through, spending time with our loved ones and friends seems all the more magical and wonderful; so I truly hope each and every one of you has had the Christmas you longed for and the extra mince pie or two (or whatever your particular vice isSmiley Happy).

 

The past few months have been both tough and positive for me, I've finished my radio and am so pleased I was lucky enough to have very minimal side effect - apart from a sore nipple for a week and a little pink skin, I came through very well; mind you I did use bottles of Aveeno making sure my skin was thoroughly moisturised the whole time and it paid off thank goodness, quite pleased to only putting it on thinly twice a day now and not by the thick trowel during treatment - I have to look really hard to see the faint 'tan' patch that remains but I don't care I've never been a topless sunbather or bikini wearerSmiley Very Happy. I've got a totally grey full head of hair, about two inch long now, it's getting rather thick (I've even needed to use a hairdryer to dry it) and has the chemo waveSmiley LOL, I find this really amusing as I never had so much as a kink in it beforeSmiley Very Happy. Still debating whether to dye it again or not, it's ok being grey at the minute as it's still short but I don't think I'll like it when it grows longer but I've still got until the end of feb to make a decision (only because that will mark the recommended post chemo length of time before dyeing it - waited so long for it to grow don't want to risk the bugger falling out again by dyeing it too earlySmiley LOL). My eyebrows grew back within a month of chemo finishing which was good, I didn't lose my eyelashes so didn't have to worry about them. I've still only got very sparse leg and armpit hair - not enough to shave yet but have made up with hair growth on my top lip and chinSmiley Frustrated.

 

Emotionally its been particularly tough at times but heck I think I'd earned the right for that. Returning to work was, shall we say interesting. I'd so looked forward to it then found myself throwing up the first couple of times prior to getting there (what the heck that was about I'm not sureSmiley Frustrated). I did underestimate just how tired I would be - heck I'd gone through chemo and radio without any problems! ended up absolutely shattered and had a couple of meltdowns. The chemo brain really frustrated me and then just when I was about to give up work (after 6 weeks post return), it suddenly disappeared, well very nearly, I came home one day and thought that I'd had such a good day - the first one since returning and ever since have gone from strength to strength and am practically back to my pre diagnosis selfSmiley Very Happy.

 

I guess what I'm saying ladies is don't give up, keep moving forward and you'll get thereSmiley Happy, my belief is I needed to hit rock bottom before I personally could move forward and I'm pleased to report that I have turned the corner and am very positive about the future (whatever that may be), it's not that I'm in denial about what has happened but have consciously made the decision to acknowledge it and move on, onwards and upwards, I can't change what happened but I can control (occasional meltdowns permittedSmiley Happy) how I deal with it in the future and am very determined to eat a healthier diet (not that its poor now) and get more exercise in the new year - just want to enjoy eating my choccies, cake, crisps and nuts first, a girls got to have some funSmiley LOL.

 

Ladies I wish you all a happy and healthy New Year and for those facing further treatment - YOU'VE GOT THIS, you are strong positive women and you will beat this and come out stronger than ever.

 

I will raise a glass (pop not booze as I still don't drink, too many other vicesSmiley LOL) to each and everyone of you amazing ladies at the New Year to toast a long, healthy life for us all for 2020 and beyond. MAY 2019 LADIES WE GOT THISHeart

 

Joemic x 

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Re: May 2019 Start

Evening ladies 

Its lovely to read your posts and hear that things are going well for you all 😊

I'm now 2 and a half weeks post mastectomy and axillary clearance and just starting to feel the swelling and pain is  settling down. I don't know why but I was expecting post op recovery to be a doddle after the chemo but it's been harder than I though it would be. I've struggled with not being able to do every day things and not driving. I definitely need to ask Santa for a bit more patience!! Still on a positive note the histology results showed 100% response to the chemotherapy so it was definitely worth it and it is a good feeling that its now all gone with the surgery. Next stop radiotherapy in the new year.

I've now got about a centimetre of head hair and lots of leg hair but eyelashes and brows are still taking their time to reemerge!!

Hope you all have a lovely relaxing Christmas with your loved ones I think it will definitely have a special meaning for us all this year and thank you all for your support over the last year. Hears to a happy and healthy 2020 for everyone 

Love Rose πŸŽ…πŸ₯‚πŸ§‘xx

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Re: May 2019 Start

Hi all, 

 

Merry Christmas to you all. I hope your celebrations are everything that you want them to be. The only gift that is on my list this year is that of good health!

 

I am well. I have eyebrows, eye lashes and mega short hair! I’m coping well with the  Letrozole and am now getting back into the gym as well as continuing with my walking! My only issue is a continuing low neutrophil count....caused because it’s my second chemo regime. But, I feel well so just have to give it time to recover slowly! 

 

When I started this thread in May, the world was a scary place. That’s why I started it!! The support that we have been able to give each other has helped enormously. For me, just knowing that I was not the only one experiencing this trauma has helped greatly. The quietness of the thread now should be seen as a positive because I’m sure it means that we are all getting our lives back. Thank you for your kindness and friendship. We are strangers, yet we know such a lot about each other in what has been a devastating period in our lives. 

 

I wish you all a happy and healthy 2020. The saying that β€œyour wealth is your health” has never been truer. May we all stay cancer free.

 

I think we are all now owed some fun...and calm! Holidays are high on my agenda for next year....

 

Take care and stay well! 

SP

xx

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Re: May 2019 Start

Hi all.  It's been very quiet on here lately but I hope that's because everyone's getting on with their lives after chemo 😊  Hope everyone who has had further surgery/treatment is doing well.

 

Merry Christmas to all - we've come through loads in the last year.  Best wishes to all for a happier and healthier 2020!

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Re: May 2019 Start

Dear All

 

wishing you all a very happy Christmas πŸŽ„ and a wonderful and healthy new year.

 

Thank you for being such a great support this year, I certainly wouldn’t have got through it so well without your support, advice, empathy, honesty and humour. πŸ€—πŸ˜˜

 

Love Ruth xxxxxxx

 

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Re: May 2019 Start

Hi Rose,

I hadn't had a general anaesthetic before, but you go under so quickly. I just remember taking two breaths of the oxygen and nothing after that until I came round. And it is so good to wake up and know the tumour (or whatever was left) has gone. It all seemed so minor after the months of chemo and side effects. I was the same as you: surprised at how much energy I now have. You forget that the chemo had gradually sapped you energy and character, but after 5/6 weeks you start to become the person you were before. You have had a particularly long and challenging treatment, so you should be so proud of your inner strength. Hairwise, my eyelashes have started to come back on the upper lids and I can just about use mascara on them, but don't bother unless it is a special occasion. Annoyingly the mutant chin hairs have also made a bit of a reappearance and I have a few underarm hairs too!

We will all be thinking of you Rose, on Friday, I hope it all goes smoothly so that you can see the end of your treatment in sight. Do you have radiotherapy scheduled too?

Take care,

Dezee xx

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Re: May 2019 Start

Hello all,

That's great news Deezee that your surgery is done and you're feeling ok afterwards I must admit I'm strangely looking forward to my surgery as it will feel like progress! I am a little anxious about the anaesthetic as I've never had an operation before but just want it all done now!

I finished chemo proper 6 weeks ago and have loads of energy now I didn't realise quite how tired I was until I suddenly felt so much better. I'm still having targeted therapy every 3 weeks at the chemo unit but only side effect from that seems to be very watery eyes which is great after all the variety of side effects from chemo! Eyebrows and head hair making a bit of a comeback but still no sign of eyelashes. I spoke to a lady at the look good feel better session I went to a few weeks ago and she said it was about 10 weeks after chemo that her eyelashes started to grow back so I'm not expecting anything imminently!

Ruth I hope your prostheses and bra fitting went well and you have a date for your radiotherapy starting it would be nice if you could start the new year with all your treatments done.

Well take care everyone and enjoy your Christmas planning.

Love Rose πŸŽ„

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Re: May 2019 Start

Hi ladies,

I haven't posted in a long while, but I am now 5 weeks plus post chemo, eyebrows are slowly returning, perhaps helped by the Rapidbrow I am using. Eyelashes are taking longer, despite Rapidlash. I was thinking of microblading until I read that you couldn't have it done until 6 months after chemo, so there seemed little point in bothering. On the plus side, my surgery (lumpectomy and sentinel node excision) was yesterday. So pleased I didn't have to wait too long after chemo. Slightly tender, but surprised how straightforward things were, and like you Ruth have felt quite euphoric after surgery, as I can start to see the light at the end of the tunnel. My blood pressure was a little high when I attended the pre op assessment, so I was more paranoid about that potentially affecting surgery than the surgery itself. Good luck Rose with your mastectomy on the 29th- not long to wait now. I have a follow up appointment on 6th Dec when I should find out when and how long radiotherapy will be. It means travelling to Southampton every day, which is about 90 mins drive away, so I may ask if I can swap hospitals, perhaps Bath or Swindon are closer. 

Have you started your radiotherapy yet, Ruth? If so, how is it going?

How is everyone else coping with a return to work and normality? And has anyone started to plan for Christmas? I intend to make the family reunion more important than present buying this year: I am looking forward to the 2 out 3 daughters who live away from home coming back for a few precious days and perhaps appreciating the time spent together even more so than in previous years.

Dezee xxx

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Re: May 2019 Start

Good morning.

 

its wonderful to hear you have been β€˜signed off’ Mangomum, but I can imagine it feels unnerving. I image without really noticing we will fall back into normality??

 

I hope your return to work has been positive Joemic and your employers have been supportive.

 

SP, my eyelashes took ages to start coming back I think it was about 8-9 weeks after chemo finishes, but I nearly have a full set now and .........eyebrowsπŸ˜€.  I also got a few chin hairs back before the lashes and eyebrows πŸ™„.

 

Rose, we will be thinking of you on the 29th, I am 5 weeks post Mastectomy now, and feeling really well, I did find the first couple of weeks very positive, (pleased it was another step completed and desperate to get back to fitness) then I dipped for a week mood wise, but it didn’t last too long. I’m going to my prostheses & next stage bra fitting tomorrow, it’s a lovely shop in Altringcham  (Bette & Belle) if anyone lives nearish, it’s about 30mins away but well worth it, they make it like a special occasion, it’s lovely.

 

I am am waiting for a date to start radiotherapy and hoping this will be over by Christmas 🀞.

 

sending lots of love to all, also I would be up for meeting up. 

Xxxxxxx

 

 

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Re: May 2019 Start

Hi lovely ladies, 

 

So pleased to read that everyone is getting there with the treatments and sounding so positive! 

I finished my Rads on the 20th October and went on Holiday on the 25th for half term. My arm still aches and my skin feels tight but no burns or peeling ( touch wood). I also had my follow up with Oncologist and I've been signed off from him so i wont see anyone will until my next appointment in March back at the breast clinic. I do have an open door though if i need to see the oncologist regarding any concerns etc. Feels a bit surreal to be honest and scary. He was very positive though and told me to go and enjoy life as the small chance of a reaccurance / spread should be observed (as in any symptoms check them out after persisting for 3 weeks) but it shouldn't let it dominate my thoughts. Easier said than done 😏

 

I guess its just back to the roll of a dice now - a bit like the chances of the lump being malignant in the first place and need to have faith that the treatment has done its job. 

 

Sp, Rose, Joemic it feels good to be back to some normality doesn't it. I cant quite believe we have got this far. I saw a lady at the Oncologist outpatients who was clearly in the middle of her chemo. I remember sitting there aching all over, feeling sick etc and seeing her made me realise how much we havebendured and survived. Definitely something to celebrate. 

 

I hope we all pop back, when we aren't too busy getting on with life, and give updates etc. I'm going to try and pop on to give support to others as much as i can. It would be lovely to meet in person, as i have seen other groups have if anyone is up for it? 

 

Take care for now. 

Mangomum xx

 

 

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Re: May 2019 Start

Hi ladies, 

 

Rose, your post has motivated me to send a message. I’m so pleased that your treatment is gong well and your MRI scan results were so good. It bodes well for a successful mastectomy. I do hope it all goes well for you. 

 

My life is slowly returning to β€œnormal” but I do still wonder on some days what normal actually is? I’m now 6 weeks post chemo. I still wake up on a Friday thinking I will be going for chemo treatment!! I’m still walking and I’ve just strayed some gentle exercise back in the gym. My hair is growing well, but it is snowy white!!! The top is starting to darken a little so it is now an interesting look, to say the least! Before chemo, my hair was dark blonde with blonde highlights!? I’m using Rapidlash products on my eyebrows and lashes to encourage growth...but so far, nothing is emerging!! 

 

I’m coping with the Letrozole thus far. My most challenging side effect is constipation, which I’m trying to manage and improve.....?! My BP can drop drastically because of this so I’m experimenting with medication to see what suits me best. But, it could be worse!? 

 

I’ve been on an a cappellla singing coaching day today with my choir. It was lovely to do this as it demands a lot of energy and focus to sing all day....as we stand all time to sing!! I’m tired now....but, I did it!! This is part of my well being plan as there is no doubt that singing is good for the soul. I’m trying hard to look after my physical and emotional needs as I’m determined to stay positive. We are survivors and this should be celebrated! 

 

My oncology review is later this month but it is truly brilliant to be returning to a normal life! 

I hope you are all doing well?

 

SP

x

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Re: May 2019 Start

Hello May ladies

I hope everyone one is well and enjoying the lovely autumn weather?  It's been very quiet on here I'm hoping that's because everyone has been too busy doing normal things again to think about posting? Joemic I hope your 1st day back at work went well for you?

I'm now 4 weeks post chemo but still going every 3 weeks for targeted therapy(herceptin and perjeta) It was nice to have a treatment last week but without any side effects afterwards. My fatigue is definitely improving and my biggest moan at the moment is still sore watery eyes so I cant complain too much! Head hair is starting to come back but still no sign of eyebrows or lashes yet.

I've now got a date for my mastectomy and axillary clearance on 29th November. My post chemo MRI results were positive with a 100% radiological response to the treatment. They hope to do a reconstruction at the same time but I've still got to make decisions about type of reconstruction and whether or not I want to keep my nipple so am going to see the breast care nurse this week to talk it all through again with her. I didnt realise there were so many options but it is good to be onto the next stage!

Hope everyone is doing well physically and emotionally. Look after yourselves ladies.

Love Rose xx😊

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Re: May 2019 Start

Hi May ladies

 

Dezee - So pleased you had your last chemo and it's great to read how positive you are feeling, fantastic you so deserve it. February isn't very far away at all and then you'll be done too. Stay positive, you can do this tooSmiley Happy.

 

Rose - Hope it won't be too long to your surgery now, glad your chemo side effects are starting to settle now, not too sure how long it will take for the chemo brain to settle mine is still fuzzy at times. I'm a little concerned that the lack of clarity I have at times will affect my work but I'll never know until I give it a goSmiley Frustrated; mind you I'll soon be finding out - two weeks today in fact. Just take it slowly and the more you physically recover I'm sure the brain will tooSmiley Happy

 

Mangomum - Have you finished your rads now? how are you bearing up, I hope the aches and pains will start to ease soon. I'm now past the 2 weeks where the skin side effects should peak and they should start healing now. To be fair my skin remains intact with no peeling apart from the skin on my nipple which had darkened during treatment but because I've kept it well moisturised the darkened skin has sort of come off without me noticing (apart from the two toned nippleSmiley LOL), the rest of the skin is a dirty brown colour - yuk! with spots, however the spots seem to be hair follicles where the radiation burnt the hair - not that I had hairy boobsSmiley Very Happy but it does look like hair follicles. Not a good look but I'm not a topless sunbather so I'm not too bothered. Hope your fitness is continuing to improve.

 

Ruth - Hopefully you are continuing to recover well and that your drains are now out and you can get a bit of normality back in your life.

 

To all the rest of the May Ladies

I hope you are all well on the way to recovery and I wish you all well for the future.Heart

 

Joemic x  

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Re: May 2019 Start

Evening ladies

Brilliant news Dezee that you have had your final chemo. That's all of us done with it now. The May 2019 starters are all officially chemo finishers!πŸŽˆπŸŽ‰.

It's a great feeling to be finally finished. I've found I've coped much better with the side effects this last week knowing it's the last time of doing it. Hopefully you will be the same. 

Ruth: hope your post mastectomy recovery is still going well and you didnt get any delayed post op problems. Is it radiotherapy next for you to?

Joemic: I'm so pleased for you that you have made it to the finish of all your treatments and have a date to go back to work that is such a huge milestone in putting all of this in the past where it belongs.

Mangomum: you are nearly at the end of radiotherapy now, I hope you are still only at gas mark 1 and the aches and nerve pains are more bearable.

SP: I hope your post chemo recovery is continuing and your energy levels are continuing to increase every day.

I had my post chemo MRI yesterday just waiting for an appointment to see the surgeon with results and plan for surgery now. The physical side effects of the 8th chemo are starting to settle apart from the tiredness but my brain definitely isn't what it used to be! My memory is terrible and writing even a simple post like this takes ages I can't imagine being back to work and having to be writing reports and holding sensible conversations with people!

Keep going everyone

Love Rose 

 

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Re: May 2019 Start

Dear Joemic 

Thank you for your positive message. Yes it was yesterday - no bell to ring as there wasn't one! However, despite being a long day (they took 2.5 hours to get bloods/ chemo sorted), the nurse took out my troublesome picc line immediately after the taxol. I finally finished at six and was so happy to finish. Out for lunch with my old colleagues at lunch today and enjoying the good weather for once. Feel like therre is tons to look forward to now. Glad to hear you are finished too. Can't wait to join you although that might not be until next Feb.Smiley Happy

Dezee xxxx

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Re: May 2019 Start

Dezee - I'm sure you will be having your last chemo this week, I think it is tomorrowπŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ», good luck☘ you go girl, you've got this, you've had it tough but you've made it, I'm in awe of your determination and resilience - be proud of yourself, you have come so far😘. One more then you're on the up, sound that darned πŸ”” good and loud, you so deserve itπŸ™†β€β™€οΈ.

 

Joemic x 

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Re: May 2019 Start

Hi, 

 

Thank you so much. It got better on my two days off but back again now. Its at night that itw most annoying as it wakes me up so will definitely try the pillow.

 

Mangomum xx

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Re: May 2019 Start

Forgot to say try sleeping with a pillow between your bad arm and body - it helped me with frozen shoulder and it helped during rads too. Also do the same with a cushion when you're sat down😘

 

Joemic x 

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Re: May 2019 Start

Hi Mangomum,

Good to hear things are going relatively well so far. As for the pains and aches, they're pretty normal, I think the radiation causes irritation to them, they did to my scars but they are feeling better now.

The shoulder pain is due to the way you have to keep your arms during treatment - a bit like a trussed up turkeyπŸ¦ƒπŸ˜. Only thing to do is take some painkillers before treatment, if you need them and just keep up with the exercises - particularly shoulder roles (both forwards and backwards) and slowly extending your arms and lift them up until they're pointing as far upwards as you can get them then out to the side up to shoulder height, I can't say for sure if the exercises have definitely improved the shoulder ache but it is alot better now.

I believe the tightness is down to the radiation, I still moisturise 3-4 times a day plus extra if my skin feels tight, it then loosens and feels better. Also don't forget to moisturise under your arm pit and the skin next to your pit, basically as far as your good arm can reach going over your chest - the radiation manages to reach that bit too and that is the bit which I feel the most tightness. 

Hope these tips help you a bit and remember it does get better, but I think you're a bit like me and get frustrated at the length of time everything takes- patience with my health is not one of my virtues😏.

Good on you for making the conscious decision not to let the possibility of recurrence blight your life. We can't spend our time worrying what may or may not happen, we have a life to live and we should jolly well enjoy it🀩

 

Good luck with the rest of your rads, they'll soon be over with too😘

Joemic x 

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Re: May 2019 Start

Hi Joemic, 

 

Brilliant news you have finished all active treatment and thinking about returning to some normality and having an amazingly positive attitude. I'm going to try and carry on as normal afterwards too and face any demons as they arrise. I'm going to consider myself cancer free / cured until proven not and hopefully never will. I think that's what we all crave - just being normal again - boring normal. 

I dont have a nipple to cook but i am more than half way in and still cooking at gas mark 1 /2 but i am having lots of nerve pains /aches across my masectomy wound site and my shoulder and arm. It feels like  like it did after surgery - like its all knitting together again and the tight feeling is back. Im doing lots of arm excerises but apparently its the funny positioning of my arm that's probably the culprit. I'm still getting peripheral neuropathy too which isnt helping! It seems to come and go but can be quite painful sometimes. Any tips to ease the aches and pains most welcome. So far I've tried pain killers, epsom sea salts and ordered a deep tissue massage roller thingy but getting a bit fed up with it. 

Good news is my energy and stamina seems to be coming back as able to walk at quite a pace now and much further distances so hopefully my anemia / bloods are back to normal. 

 

Mangomum xx

 

 

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Re: May 2019 Start

Good evening lovely ladies

 

What positive news from you all..fantastic, it's always good to hear positive news, means our diagnosis can't keep us down for long, no matter how hard it tries to make it for us what a fantastic bunch of warriors everyone has been. If nothing else this whole sorry episode has taught us just how much inner strength we all have in the face of adversity and how we can face anything in the future with courage and determination. I feel privileged to have been able to share your journeys with you and the support both given and received has made these past months a little easier to bear and for that I thank each and every one of youHeart.

Now the mushy bit is over..........

 

Mangomum - Hope the rads went well and you are not cooking above the gas mark 1, my boob is still on 1 but my nipple is gas mark 7 at times ooh it gets hot!, I think that's probably because it was sore going into rads, I think the nerve endings were finally starting to heal, hopefully the rads won't have caused further damage to them. Glad they are over now.

 

Dezee - What a rubbish time you have had throughout your chemo. Doesn't matter how old you are, you're steaming ahead to your LAST chemo, whey hey I am so pleased for you, what a trouper you have been battling through those rough times what strength and courage and here you are ready to have your last one, you go girl you've definitely got thisHeart

 

Ruth - I am so pleased you feel better than you expected and surgery went well and after all that organising and preparation you can take it easy for a few days (although that ironing pile always seems to breed in my houseSmiley Frustrated). 

 

Rose - I hope you managed to get your last chemo and side effects stay away this time, you are on the other side now. Fabulous. Being snappy and irritable is all part of the process, it's a very frustrating thing to go through, hopefully you will find things settle a bit for you once you have seen the surgeon, it's all the pent up anxiety and anger we bottle up that causes it - we need an outlet but unfortunately it's not always the outlet we want but remember it does pass and you are well on your way to finishing your treatment plan. Keep on going, you can and will do it, you've done fantastic so far.

 

SP - Glad you're starting to feel normal again, you had such a tough time but you made it, you've coped with all the treatment so far so I am sure you will manage with the Letrozole, your determination will make sure of that.

 

My rads are finished and apart from the hot nipple and a bit of skin redness I have done really well, at the moment I am waiting for it to get worse (was told it gets worse for 2 weeks following rads then gets better), I still moisturise 3 - 4 times a day and drink lots of water so maybe it is as bad as it is going to get...... she says with fingers crossedSmiley Wink. I've been to see my GP and have worked out a plan to return to work on the 4th Nov - I am so looking forward to it so I can firmly put all the active treatment behind me obviously I can't forget but I can get on with my life and I also refuse to let it blight my future, what will be will be - I choose not to spend my time worrying about what may or may not happen. Good luck to everyone on the next stage of your treatment whether it be active treatment or not.

 

Joemic x 

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Re: May 2019 Start

Hi ladies,

Glad to hear lots of good news. Sorry if I mislead eveyone. It wasn't my birhtday last weekend but in just under 3 weeks and though not far off 60, I am still only 57 nearly 58. Not that it really matters at the moment as I feel as though I could be 60! Feeling much better after getting yesterday's chemo out of the way and less than a week before the last. Yippee! Good luck Ruth and here's hoping your recovery continues apace with no setbacks.

Dezee xxx

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Re: May 2019 Start

Hi ladies,

 

Ruth, I’m delighted that your mastectomy is done and the surgery went well. Just give yourself time to recover and heal! 


My advice is to do the physio exercises every day. My hospital had video clips to show you exactly how to do them all! This was helpful as you need to know you’re doing them right! 

I didn’t have any drains as I’m a 34B. I didn’t have reconstruction and don’t plan to have any. I don’t want any more surgery!! No tattoos for me either!!

 

I had my seroma drained twice. It then went smaller but hard.  The healing of the seroma then stopped during chemo. I was told this was to be expected. I’m hoping, now that my chemo is over, it will disperse. 

It is good to hear that everyone is reaching the end of their treatment journey. There is a light at the end of this tunnel for us all. Well done us!! 

I'm now almost 3 weeks since my last chemo. Hurray!  I’m eating better and my taste is slowly improving. I’m still walking   and have started some gentle strengthening exercises as I am so very weak!! Today I had a deep tissue massage  to wake up my muscles!! Brilliant!! I’m gradually starting to feel like a normal person!! 

I’m coping with the Letrozole so far too!! There is hope!! We have to believe this and I refuse to live in fear. We are stronger than we think...because we’ve come through this nightmare. 

Be proud of yourselves ladies! We can ALL do this!!

 

SP

xx

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Re: May 2019 Start

Ps Happy Birthday Dezee xx

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Re: May 2019 Start

Hi Ruth, 

 

Brilliant to hear you are doing well and feeling better than you thought. I didn't want to say the masectomy was easy in comparison to chemo incase you had any complications etc. The only part i found painful was the drain and i had mine removed two days later. This did leave me with a seroma which needed draining for a few weeks but no half as uncomfortable as the drain. I too am considering a tattoo rather than more surgery. Im considering having the other breast removed or at the least reduced in size as i was /am an E cup so im left quite lopsided.

 

The arm exercises really do help.

Mangomum xx 

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Re: May 2019 Start

Hello everyone

 

Happy 60th Dezee.πŸ˜€

 

I am home after the mastectomy and I am feeling much better than I expected today. Yesterday I felt like I'd been though a mangle but a quick turn around. The drains are a nuisance and not knowing how long they need to stay is frustrating but like most of this it's one day at a time!

 

Mangomum, how long did you have your drains in for? I wont be able to opt for reconstruction for 12months and I am not sure whether I want to....I have been researching tattoos instead! 

 

Rose, I hope you have had your last one today, and I felt exactly the same. I wondered if the menopause moods were kicking in?? 

 

sending love to all πŸ€—

Xxxxx

 

 

 

 

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Re: May 2019 Start

Happy 60th Birthday Dezee 🎈🎁 πŸŽ‚πŸŽ‰ xxxxxx

It's a shame you couldn't enjoy your celebration as much as you would have normally done because of these awful side effects but it's a good excuse to organise some belated celebrations once you are over the worst and its not long now!

We will get there and I find hearing positive things from the other ladies on the group who are further along than us really helps! 

I met up today with a friend who had a mastectomy and radiotherapy last year she's now back at work and is reconstructed and doesn't have another follow appointment for a year!!! She said the experience obviously has changed her and she had some very low times but she doesn't think about it too often now and definitely thinks of it as being in the past.

Keep plodding on we will get there too.

Take care 

Love Rose 

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Re: May 2019 Start

Afternoon all

All the best for your mastectomy today Ruth, I hope it all goes well and that you are back to normal as soon as possible.

Rose - good luck when you finally see your surgeon. Mine made me feel very emotional as she said well done for getting through the worst stage ie the chemo, so I hope that whatever the surgery plans for you are that it will be easier than the trials you have had to cope with so far. It's so difficult being your old self when you are tired and, more importantly, emotionally drained. I had a 60th cream tea celebration yesterday which I should have enjoyed more as there were lots of local friends there, but I was too tired from lack of sleep (botty problems) over the past few nights. I am sure we'll all be back to normal sociable beings when we stop constantly brooding over the cancer. 

Love and hugs to all of you 

Dezee xx

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Re: May 2019 Start

Hi, 

 

Ruth good luck for your surgery tomorrow and wishing you a smooth recovery and to you Rose for your last chemo on Tuesday and surgery to follow. I had my masectomy prior to chemo but haven't had any reconstruction yet. I was quite nervous begore surgery but i found the nurses so lovely and caring and was able to go home the following day and recovered well from the surgery so i know you two will be looked after. 

 

Mangomum xx

 

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Re: May 2019 Start

Evening everyone,

Lovely to read all your updates as usual.

Ruth: Sending love and keeping everything crossed for you for your surgery tomorrow. I will be having the same surgery as you but I haven't got a date as yet. I hope your recovery is quick and uneventful you should be able to concentrate fully on your post op recovery as you have been so organised at home🧑

Dezee: Sorry to hear you've had problems with your bloods and picc line and I can definitely sympathise with the constipation! But very positive that you only have 9 days to go until your last chemo then its onwards and upwards!

Mangomum and Joemic: hope the radiotherapy is still going ok for you and you are both starting to feel more positive and planning for the treatment free future ahead.

 

My last chemo is booked for Tuesday if bloods ok tomorrow. I'm still waiting for a date for an MRI and appointment with the surgeon to confirm mastectomy date and discuss reconstruction options but they initially said 4-6 weeks after chemo finishing so I'm hoping for mid November at the latest. I can empathise with everyone having some low days I thought I would be feeling on a high going into the last chemo but instead I've been really anxious and thinking very negative thoughts, I've been really snappy and irritable with people which makes me feel even worse. I'm also sick of my own company and everything seeming to revolve around treatments and managing side effects, hopefully seeing the surgeon might make me feel a bit more positive as does hearing all of you progressing with your treatments.

Sending you all love and positive thoughts.

Rose xx

 

 

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Re: May 2019 Start

Hello all

 

Hi Dezee...I did find the last few weeks of chemo, and then for a few weeks after, gruelling,  and felt quite withdrawn ( and wasn’t sure if this was mood swing from menopause!) I’m sure having your daughter home will ease you through this and knowing it’s finishing does really help. 

 

I am getting ready for my surgery tomorrow, mastectomy on the right-side. I am really keen to get this stage over with now, but am a little nervous. I have never been more organised at home πŸ˜† lunches, meals ready and ALL the ironing done for the week, I have no idea what to expect.

 

Joemic - are the rads over for you 🀞

 

SP - how are you getting on?

 

Mangomum - I hope you are feeling better.

 

sending lots of love to everyone

 

Xxxxxx

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Re: May 2019 Start

Hi Dezee, 

 

It sounds like you have been through the mill. I too found it got harder to bounce back from rounds 5 and 6 with low bloods /anemia / botty problems which left me feeling quite down and negative for a couple of weeks. I think it's quite common as our bodies and minds have taken a battering. Your daughter coming will hopefully help you get through. Sounds like the chemo has done it's job and you are able to have a lumpectomy - hopefully radiotherapy wont be too far behind and you can say goodbye to active treatment.

Take care

 

Mangomum xx

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Re: May 2019 Start

Hi ladies,

I did post a message about a week ago, but lost it in the ether and didn't have the energy to start all over again. Update after my blood transfusion of two and a half weeks ago is that my neutriphils were down (1.2) as well as my platelets the following week, so the weekly paclitaxol was cancelled so that bloods would be OK for my 7th big treatment. Then my picc line was blocked again last week and I thought chemo would be postponed while they took out and replaced with another one. However, the sole male  bcc enthusiastically volunteered to unblock it, which he managed to do so, so that went ahead. Then I was in to see the surgeon on Friday who confirmed a lumpectomy to be scheduled the week after 15th Nov.  Did anyone else find that meeting emotional? I suddenly realised that the first phase of treatment was nearly finished and that there might be an end to all this one day next year.

I thought I was through the woods chemo wise, but have suffered from bad constipation from last week's carboplatin, so not a nice time since last Tuesday. Seems to have finally sorted itself out this morning, with extra meds from hospital! Only 9 days to go before I finish chemo now and my eldest daughter is coming home from London on compassionate leave from work to keep me company, while my husband has a break from the routine and goes on a charity cycling trip to Majorca. Looking forward to quality mum and daughters time.

I'm pleased to hear all is going well for you Mangomum and Joemic with radiotherapy. Ruth,  you are a little ahead of me, so probably have a date for surgery now. I hope you are managing to bounce back a little from the end of chemo. Rose, I cannot remember whether you have had surgery or are starting radiotherapy- blame it on chemo brain. I hope no news is good news? Anyway, thank you all for the strong words of support, we are all getting there!

Dezee xx

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Re: May 2019 Start

Hi ladies, 

 

Radiotherapy all going well so far - although i do find the whole being in a room on my own with a machine full of radiation a little unsettling and i really hate the noise it makes - spooks me out! But i was the kid who hid behind the sofa when doctor who was on- I was scared of the darlics πŸ˜‚

My mastectomy wound feels a little swollen today and like you Joemic its at around gas mark 1 in terms of pinkness and heat. Im glad you are nearly at the end now and have managed to avoid too much redness /soreness and your energy levels haven't completely depleted even after a daily treck.

I did pop into the Maggies centre which was lovely and ive signed myself up for a few courses for when im finished as i feel i need to keep on the positive path to avoid another post treatment crash in my mood and stop those dark thoughts gatecrashing again! 

Ruth, SP, Dezee and Rose i hope you are all getting there now. Its been a long old journey for us all πŸ€—

Mangomum xx 

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Re: May 2019 Start

Hi ladies

 

Mangomum - I hope your rads are going well so far, I'm still cooking on gas mark one although the skin is going a little darker and looks a tad mottled however, there is no pain or itching so fingers crossed it isn't going to get too bad. I'm still managing to walk up the hill from the train station although it is feeling a little harder but not enough to look at an alternative route and as I've only two left I'm sure I'll manage it then I'll collapse and sleep for a weekSmiley Very Happy.

 

Rose and Dezee - Keep going ladies you're both nearly done, not much longer, you'll get thereSmiley Happy

 

SP - I hope your side effects are subsiding now, to be honest the only side effect I got from the Zometa was fatigue - although the chemo nurse insisted it was the chemo and not the Zometa but didn't have an answer when I asked why it only happened when I had thatSmiley Frustrated, I didn't realise initially but it was my family that pointed it out. I guess they don't really understand that we aren't all the same and things can affect us all differently and as unique individuals our bodies don't always follow the rulesSmiley Frustrated.

 

Ruth - I hope you are starting to feel a little less fatigued now and getting your energy back - have you got a date for your surgery yet?

 

To all other May ladies, I hope you are all coping well and getting some of your energy back.

 

Joemic x