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Re: May 2017 chemo starters

Hi Shi lovely to see your ✨ sparkles.
I’m struggling to sleep with a stuffed up nose so I’ve sneaked downstairs and come back here. It’s like the old times on the steroids. Been thinking about last year a bit lately. It pops in my mind from time to time. Mostly it’s just passing but feeling ill takes me to bad memories. I have little sympathy when family have a cold but it does suck when you’re sniffing and sneezing 🤧.
Moan over. Hope everyone is doing ok.
X x x x x x.
Shi Community Champion
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Re: May 2017 chemo starters

Mishy yes it’s lovely to 👭👭have quick catch up with amazing may ladies 😁😁😁 mai, my hairs 🤪🤪🤪🤪but it’s hair and I’m happy, just want it long enough to get the straighteners on it which is why I’m just going with the mullet. Yes treehouse 💪💪💪💪you are amazing and then some hope you have biggest Christmas planned for this year, I remember you and your neighbour in hospital going for a lap round the Christmas tree 🎄 who was it who glanced up and thought Greg Wallace was outside their window? That still makes me laugh now, you all have the best humour 😘😘😘💕💕💕✨✨✨Shi xx
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Re: May 2017 chemo starters

Treehouse i have the Alice bands too the ones with scarfes on Mai i love your analogy of hair its right actually i do know one thing it has never been in such good condition as it is atm xx
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Re: May 2017 chemo starters

Georgie is always lovely to have something to focus on so keep that wedding as your focus you will be looking great and feeling in the mood for a celebration when i was having my chemo my focus was on my 1st grandchild she was born on the morning on my 5th chemo i was my daughters birthing partner watched my little ray of sunshine being born then went to chemo straight after with a new focus on getting the job done!!! You might find by making something like maybe a wedding journal ir something might help take your mind somewhere else during treatments i made a baby hamper and scrapbook
Treehouse Mai Daffodil Annie great to hear from you too as well as Jay and wolfee isn't it great to hear from everyone xxx
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Re: May 2017 chemo starters

Hi Georgie, you just focus on getting to that wedding. Planning for it will give your spirits a much needed lift, and hopefully take your mind off the current stuff a bit. Apparently I had a rough time with chemo. My Onco thinks the F bit is old fashioned so I was put on EC-T. Unfortunately I had three infusions, followed a week later by a hospital admission. The last one was a corker as I went into rigor and was in hospital a week. Turned out my body didn't like my Hickman line! My fourth infusion was ok as the Hickman wasn't used. So we are all very different, but with the help of my team I'm through it all. As you will be. Onward and upward. X

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Re: May 2017 chemo starters

Jay, I agree, I feel more energetic than before diagnosis and I think it's because I've taken on a healthier lifestyle and have a better attitude to life.  Like everyone else, my hair is now a bit wavy and unpredictable but I've embraced it and am quite happy with what I have.  Hair is good!  We have all been so good for each other: love, understanding and humour.  A problem shared is a problem halved.  We sure as hell paddled the lifeboat back to the shore! Xx

 

Shi, don't worry about the hair, it has to go through all of the phases like the moon before its full! 😂 💗💗 xx

 

Treehouse, bigs congrats on finishing treatment.  Look how far you've come.  I remember at one of your lowest points when you was waiting for a blood transfusion and I was virtual singing "When tomorrow comes" for you!  Xx

 

Daffodil, I had my BCN appt today and will be getting a referral to speak to a consultant next.  I'm not in a big hurry as I'm enjoying time away from being an inpatient!  It's a lot to think about again isn't it? Xx

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Registered: ‎30-05-2017

Re: May 2017 chemo starters

Hi everyone,

Good to read the latest posts. Most of us have much to celebrate with slowly returning to normality. I have enjoyed getting back to part time work as well as Pilates and yoga. My next dilemma is my reconstruction. I have my appointment with the surgeon next week. I am still unsure which method to choose and when to go for it as recovery times vary and I am not sure when to put my life back into recuperation mode. 

It is hard to believe how far we have all come. Thanks for all the support! x

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Registered: ‎24-03-2017

Re: May 2017 chemo starters

Georgie Gee - yes I too started with EC (accelerated) x3 then onto T x4 with herceptin and pertuzmab. Then had surgery (right MX and complete node removal, 17 I think were removed) I then continued with 3 weekly injections of just Herceptin (18 in total) which finished in June this year. I also had 15 x rads in Nov/Dec 2017. All is doable and achievable but with some tough days! My best advice is listen to your own body - do what it tells you and seek reassurance from us ladies who either are or have been through it.

Your aim date is 1 June 2019 - go for it!

Jay68 x
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Re: May 2017 chemo starters

Hi AnnieJ and others, and thank you for your feedback about polybalm and nail remedies.  I will report back to other threads about what worked for you. 

 

It strikes me as amazing how all of our lives must have changed so much since diagnosis, but a year on, and you all seem to have come out of the other side and still the 'right way up'.   It's great that you all still keep in touch, and I admire you for how you have all coped. 

 

I have had had my second infection on FEC now, and the antibiotics are playing me as well now with their own S E's.   I start T and herceptin on 4th October, and am a bit scared.   Anyone been through the same as me ?

 

 I would be interested to know how FEC T plus herceptin for a year and bone protection 6 monthly, (for 3 years so no one will know yet.... ) plus radiotherapy has affected you a year on?  I had no hormone involvement so don't need hormone treatment.  

My daughter gets married on 1st June next year, and when I knew the date, I was so excited to lose weight, and gave myself a year to do it.  Then 4th June this year I had the news I had BC.  Now I have forgotten a bit about the weight loss, and just hope I will have hair!    How things change.  

 

All the the best everyone 

 

Georgie G xx 

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Re: May 2017 chemo starters

Hi Georgie G, I used Defiant nail oil all through my treatment (EC-T) plus 25 rads. I also had manicures when I was ok and used dark nail varnish. I kept all my nails, and I think they are much stronger than before. I went online for the oil, to a well known cancer site . I ordered the shampoo system from there as well - Plantur, which has definitely helped with hair. My BC nurse recommended coconut oil for my scalp when my fuzz came through and I used to go to bed in a haze of coconut bliss! I think the treatment has made my hair coarser , and as I am stage4 and on continuing treatment my hair does suffer. Anything is preferable to bald though! X

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Re: May 2017 chemo starters

Oh the uncontrollable hair. I now have 3 hair bands of the ‘Alice ‘ variety ( thanks to a fellow warrior with more style than me)
I use these when I am unable to tame the waves. I have coloured it a couple of times a natural dark brown because the vast amount of gray depresses me. I have been keeping it cut short but after seeing Mai with a lovely bob I have been inspired to persevere and grow it. We will see how long I last. Colour due in 2 weeks the roots are starting to show.
On the whole I love my crazy wavy mop.
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Re: May 2017 chemo starters

😂😂 yeah sounds like mine i haven't dyed mine yet as im not sure what im going to do with it i do have a white.. yes thars right patch at the front which wasn't there before chemo the odd stray grey hair like everyone my age i used to highlight it before but this i really don't know how or what i can do with it it didn't look that bad when it was short short actually looked quite on trend but now its nana short its 😨
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Registered: ‎24-03-2017

Re: May 2017 chemo starters

Shi / Mishy - hair?! - please don't mention it! haha!!

 

Don't get me wrong, I'm so thankful it returned and lovely and thick too, however, I don't like the texture, colour nor it's own style!

 

I've coloured it - but still it seems to have it's own mind on that - I've had it trimmed and thinned a few times - as for trying to style it - I've given up - I let it do it's own thing - sometimes I'm happier with it than others... nothing I try to do makes an awful lot of difference!

 

My biggest concern at the moment with it is the fact I have my Niece's wedding to attend this Saturday - I've chosen my outfit - shoes and bag and I can paint my nails and perfect my make-up - but I have no control over what my hair will do - I just have to see how it goes on the day.....!  I could become known as the crazy Auntie with the "hair"!!!

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Re: May 2017 chemo starters

Jay you are definitely right about everything including the embracing of the new normal and being thankful that we are living each new day when im having a moan about things i remember that i am lucky in more ways than one
My hair ob the other hand the least i say about that the better 😨 its at that will i persevere abit longer or get it chopped off stage have had it cur but uts wild still growing at different stages so peeing me off a bit but everyone insits it looks ok
Shi how delightful a footballer cica mullet i remember mine with fondness after my cut that went looked fab for a few weeks now i resemble Doris from the bingo 😨👍
Shi Community Champion
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Registered: ‎11-10-2017

Re: May 2017 chemo starters

1980’s curly mullet 🤪🤪🤪
Shi Community Champion
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Posts: 3,246
Registered: ‎11-10-2017

Re: May 2017 chemo starters

Hi jay, no not tried cbd water, I do take the 4000mg cbd oil though because I was a tn, I take it because it makes me feel I’m doing something and that’s all any of us can do isn’t it 😁😁hows everyone’s hair coming on? Mai’s Rocking a coco Chanel last time I saw her, I’m currently rocky big footballers circa
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Re: May 2017 chemo starters

Hey ladies,

 

What's this water they are ranting about on my local BBC radio station this morning?

 

CBD water available from Holland & Barret, Sainsburys, Waitrose and other outlets.

 

Has anyone tried it?

 

x

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Re: May 2017 chemo starters

Hello Georgie Gee and welcome to our forum!

I'm sorry, Polybalm is a new one on me! See look how things change in a year! A lot of us used the Udderly Smooth cream (with added urea) - that is a great moisturising cream recommended by my Chemo team - it can be used anywhere on the body.

I also kept my nails covered in very dark nail polish throughout chemo and for at least 2 months after. It was not until this time that my nails started to become problematic - splitting and very weak and I lost my half moons.

My biggest advice is to keep your nails short - it's something I didn't do and I feel now that didn't help.

I was extremely lucky with my toe nails - again I kept them covered in dark nail varnish and I didn't expose them to the daylight - which was very difficult as I went through chemo (like the rest of the ladies on this forum) during a very hot summer!

Another helping factor is Epsom Salts (both for the whole body in a bath and for aching fingers and toes in a small bowl).

I'm pleased to say - my nails are now much stronger - I'm able to keep them a little longer and I now wear pretty coloured nail varnish! It does all return.......

Good luck for your T part of chemo - you can always come back to us very experienced ladies if you need any further advice - I'm sure one of us will have the advice or information to calm your fears and reassure you!

Take care - Jay68
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Re: May 2017 chemo starters

Hi Sarah19.

 

How lovely to see you return and I'm glad everything is moving along smoothly for you and that the medics seem to be looking after you extremely well.

 

I was reading through your post and although I'm not on the same meds as you, I can relate to the list of side effects you are suffering ie aches around the shoulders, lower back, uncomfortable feeling in the rib cage - I also suffer aches in my hips (especially after exercise) - and foot pain in my left foot/heel.  In general ladies, I do believe a lot of these side effects have been caused by our treatments and not our current meds - chemotherapy is after all poison and with that in mind, our bodies (I feel and fear!) will never be the same again - added to that radiotherapy (for those of us who had it) - again brilliant that it's available but again it destroys both good and bad cells - both of these treatments (although amazing) remain active in our systems for far longer than we are informed at the outset.  I'm seeing reports of ladies 3/5 years out of treatment and still suffering these side effects.

 

Adding to these two treatments our own personal meds (ie Herceptin/Tamoxifen/Anastrazole/Ibandronic Acids... etc etc.... these too have side effects but I really do think the majority of our aches and pains have been caused by the original "harsh" treatments - I for one will certainly not complain about that as I know those together with the two targetted therapies I was on alongside chemo, destroyed completely the cancer that was in my breast and lymph nodes - but the price to pay is the aches and pains I now suffer with on a daily basis - of course I'm not complaining because I'm still here - I still wake up each day - embrace the world and thank my lucky stars....  

 

I may have turned 50 this year but indeed I really do feel as though my body turned 70!!  I do exercise but I'm limited and I eat healthy and have cut out alcohol completely together with soya - but I'm alive and I'm a new "normal" - not one I'd dreamed about but I'm happy with the one I've become!!  

 

Each and every one of us has been through a massive trauma.  It was in fact a year ago yesterday that I had my single MX and all lymphs removed!  Just be kind to yourself and never forget this motto; look back but don't regret, look forward - we all want to dream about our tomorrow's but live for today - enjoy, smile and be happy!

 

It's lovely to see our forum coming back to life - to see how we're moving on -  this time last year I simply couldn't have been as brave and positive without all you amazing ladies xx  

Shi Community Champion
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Re: May 2017 chemo starters

Hi wolfee, treehouse ❤️❤️❤️Lovely to hear you are doing well 👍👍👍 and jay hope you get answers on 4th and glad you are enjoying the yoga, it’s something I keep meaning to try. Mishy hope you are having good holiday/had good holiday you were going up to Scotland is that right? Mai ❤️❤️❤️As always my Lola lobing 😁😁😁mate. Sarah, sorry I can’t help I was same as mishy a tn. Georgie gee, I did what mai7 did with black polish and kept my finger nails, I lost big toe nails and little toe nails though even with black polish on. 💕💕✨✨✨Shi xx