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February 2019 chemo starters

MBJ
Member

Re: February starters 2019 - yes, we rule!

 

Trixielady this is the old real me pre Barry BC with my own locks. 

Yes Implausible once my grey hair is long enough it will get some purple or pink tips I think.

IMG_20190313_091414.jpg

 

Member

Re: February starters 2019 - yes, we rule!

Hi Implausible,

 I read up about Masquerade on Wikipedia. Amazing story from all angles. Love the photos you posted. 

MBJ, looking great.

 I may just be tempted to look into wigs myself. So far , my money is getting spent on other stuff.

Nettienoo hope that you get the blood results you need.

 I have had 2 bowls of my very green soup ( I liked it) but would reduce the water content if I made it again. The flavour is a lot more subtle compared to spinach.09C34172-DEBB-4277-8B93-36A85DF3926F.jpeg

 

 

The path through to Maidenbower ( suburb of Crawley) to get to where the wild stuff grows:4D4FD080-9E26-4748-9D0F-7A43FE3DB0EF.jpegWild garlic

And 

F28DEC80-0950-4A69-B0DA-5B56A5B48D61.jpegNettles

I could quite happily be a witch 🤪

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Re: February starters 2019 - yes, we rule!

Wig looks great Dr James!!

 

I've never seen bake off though so can't confirm or deny resemblance there Smiley Happy

 

There is a chance here to have some fun and experiment with different hairstyles and colours..

Member

Re: February starters 2019 - yes, we rule!

Afternoon MBJ 

It really does look fantastic but obviously we didn't know you before so was the long blonde hair a wig too have you put a picture of how your hair was before on here? My usual color is brown but i tried my friends short blonde wig on and liked it mind you nobody else did xx

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Girls

Here is my new short wig I had it cut and styled on Tuesday. I am not sure about it yet I feel like Prue from the Bake Off. It's a bit itchy too. Have not been brave enough to venture out in it yet.IMG_20190509_115418.jpg

 

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Implausible

This was on over two nights on ITV men first night for Prostate and Testicular cancer, then women for breast cancer. Victoria Darbyshire was in it. They do a dance routine and get topless or (boottomless for the men) to raise awareness. It was a hard watch in parts as it's so close to home. 

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Re: February starters 2019 - yes, we rule!

good luck with your bloods Nettie

the rain has finally lifted here and it is sunny again - hopefully your weather will soon follow suit

I've googled that Full Monty thing, looks like it was on ITV the night before last.  I'll have to see if my telly has it stored on "catch up"

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Re: February starters 2019 - yes, we rule!

Implausible, love your new bathroom so much. 

Marlyn, hope today goes well darling. 

Just been for bloods again. I’m not too hopeful that anything will have changed since Tuesday but will find out later of course. 

I really can’t wait for this rainy period to do one! It’s so gloomy outside. Even the dogs look depressed. 

Love you all. Xxxx

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Re: February starters 2019 - yes, we rule!


@MBJ wrote:

Oh girls I just watched the Full Monty Girls for breast cancer. Had to fast forward a few bits, I had no idea that Martina Navratilova had been treated for breast cancer. 

Hard to watch but very well done.


what's that?  something on the telly?  I pretty much only use Netflix and Amazon Prime so I miss everything that's on "real" tv.  Except for Ghosts on BBC on Monday nights which I have fallen in love with Smiley Happy 

 

And Rosina - that Masquerade book literally ate up 100s and 100s of hours of my life as a child.  I was so determined to solve the puzzle and find the golden hare!  In the end the people who did find it - years later - were accused of cheating!  big scandal!  Maybe he made the puzzle too difficult....

MasqueradePage1.jpgimages.jpgrabbit2.jpgmasq_prize.jpgthe prize.....

 

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Re: February starters 2019 - yes, we rule!

MJB, I watched them both yesterday and spent most of it in tears. A little close to home now, but I agree it was very well done. 

 

I noticed yesterday my bold patches above my ears have started to grow. Hopefully it will continue. Excuse no make up, I just couldn’t be bothered this morning. My PICC line seems a little less inflamed this morning. 

 

Implausible, the bathroom looks fab, I like the Flooring, and wow they are using the bin, never in my house 😂😂😂

 

Marilyn good luck today, hope the time goes quickly. 

 

Best get in with a bit of house work while I feel like it, if you know what I mean 🤪

MBJ
Member

Re: February starters 2019 - yes, we rule!

Oh girls I just watched the Full Monty Girls for breast cancer. Had to fast forward a few bits, I had no idea that Martina Navratilova had been treated for breast cancer. 

Hard to watch but very well done.

Member

Re: February starters 2019 - yes, we rule!

/wild-garlic-nettle-soup

Morning Implausible ( and all),

no I haven’t heard or seen the V series.

I also looked up ‘Masquerade ‘ as I hadn’t heard of that either.

 I am learning all the time.

Off to forage for wild garlic and young nettle leaves ( loads around) as I want to cook the recipe mentioned above.

Good Luck to those having chemotherapy today.

Hugs Rosina 

 

 

Member

Re: February starters 2019 - yes, we rule!

Morning all you lovely peoples

 

Going to try to have a proper catch up before I leave for work.

 

Nettie - that hair brush looks interesting.  I'm going to wait to see how fragile my hair feels when it finally grows back, as I am hoping it will be fairly "sturdy".  Friends who have had chemo before keep telling me that it grows back stronger than ever (and sometimes curly!), so let's see....

 

Edinbird- that's a good question about how to deal with regrowth of different lengths.  I guess that will be a question for your hairdresser as to how best blend it all in....

 

Seaside.... I see drama continues re MKL!  Planet Ice throwing their toys out of the pram and threatening to kick Cov and Manchester elite teams out if their rinks unless the MK bid gets approved?  Or did I read that implication wrong?  Blimey!


Hope you are enjoying Broadstairs if you are there already.  I always quite enjoy being at the coast even when the weather is bad.  If it is really windy you get those huuuuuge waves.  That's when you really see the power of the sea.

 

Sonia I'm glad the ankles are behaving, hopefully the PICC line will follow suit

 

Marlyn I hope you are armed with plenty of good books for your 6 hour stint today and your phone so you can pop in here and chat to the gasbagsSmiley Happy

 

Daisy..... "ONLY a grade 2 reaction"  blooming heck, it sounded horrendous to me!!!!  I'd hate to see a 3 or 4!  Hope the lotions and potions are working and , more importantly, that they can do something to prevent it happening again next time.

 

Rosina I shouldn't laugh but just as I read your post about reptilian skin I was shelving this DVD that my friend gave me as a present yesterday!!!! Smiley Very Happy20190509_084404-picsay.jpg

 


If you remember either the original V or the remake you will know why it made me giggle.  I hope you don't eat live rats whole!! Smiley Very Happy
In all seriousness, I hope the new cream soothes your excema

 

Susie glad you have arrived at your holiday destination after the flight delays, hope the journey wasn't too tiring, have a brilliant time!!!

 

After I bottled out of going to Edinburgh this weekend (I didn't dare be too far from home so soon after my hospital admission, just in case something went wrong again - although of course now I feel fine and I wish I hadn't been such a coward!!!!), it is so good to see you off on your travels.  It gives me hope that it won't take too long once all this treatment is done and dusted, before I'll have the guts to get on a plane again.  You are an inspiration!

 

Edinbird that old reel to reel is gorgeous.  I especially love the very retro mint green colour.
Hope your tummy feels better today.

 

Rosina - the photo of the mummy and baby ducks in silhouette is lovely!!!

 

Oops look at the time I had better run

 

Before I go though, couple of pics of the finished bathroom as the builder just popped round to put up the mirror....finishing touch:
20190509_082608-picsay.jpg

 

20190509_082618-picsay.jpgThe boys asked for "lino like a pair of Vans" Smiley Happy

 

20190509_082658-picsay.jpgFunky heated towel rail plus a bin that to my surprise the children are actually using rather than just throwing loo roll tubes on the floor!

 

 

Take care all

Sarah x

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Edinbird

How wonderful to find something like this. It looks a bit like something a secret agent would have used in WW2. 

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Re: February starters 2019 - yes, we rule!

Edinbird,

my Dad used to have something like this. Definitely late 50s to 60s I would guess.

Rosina

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Re: February starters 2019 - yes, we rule!

Yes Rosina it’s in the science museum!

 

https://collection.sciencemuseum.org.uk/objects/co8084531/emi-flatta-battery-portable-tape-recorder-...

 

Not sure exactly how old it is. I used reel to reel when I was a journalist starting out 20 years ago but not one this old!

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Re: February starters 2019 - yes, we rule!

It was busy in the park today.

My usual route

39EF02B7-81C5-421D-8039-4A44C3EDE952.jpeg

 

F7FBC25D-CC48-497C-B111-34DA16B0DBBB.jpegThis has come out better than expected.

 

82744B06-6A33-453D-9344-006596774D06.jpegDad has swam off

 

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Re: February starters 2019 - yes, we rule!

Edinbird is that a 1960s tape recorder?

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Re: February starters 2019 - yes, we rule!

Well today improved although my stomach remains bloated and uncomfortable on one side. Got into my work so felt better. I feel so sorry for everyone suffering, a little belly ache is annoying but nothing too bad I should stop moaning!

 

Stayed in all day as it’s miserable out. So no makeup but here’s band four anyway. I have serious headband hair having not bothered taking it off overnight. I find they make my hair a lot more greasy than the hats.

 

973652A4-C6E6-49B8-AC69-923949773368.jpeg

 

Cant really see the colours and pattern on it for some reason.

 

And this is what I managed to rescue from work yesterday! So pleased I was allowed to take it but most things in the cupboard are just going into a skip... would have been a travesty! Given I used to be a radio journalist this is so cool! Need to find somewhere for it now

 

A3AD851F-B62A-4394-971D-4DFE6775FCFE.jpeg

 

59920795-8B45-468C-B197-46A26936D576.jpeg

 

69B96F59-D7C8-48DB-8CE6-D1D27C2DB1F3.jpeg

 

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Re: February starters 2019 - yes, we rule!

Arrived in Aix.😎😍☺

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Re: February starters 2019 - yes, we rule!

Hello lovelies,

‘Oh well, one step at a time ‘ it most certainly is 👍👍👍

Enjoy your breaks at home or otherwise.

 I visited my class today ( lunch and stayed till 2.45) . Good to see everyone.

Now that I think of it I forgot to promote my hike.

My colleagues know but not the kiddies.

 I will have to fix that next time I am in.

Guess I am more interested in what they are all up to .

 I drove there and back.

Feeling pretty decent.

Looking at myself was scary this morning ( eczema has erupted on my face so pretty reptilian with a bald patch. Hmmm).

Thank goodness for my Clarins foundation. I use the everlasting cushion foundation with an spf 50.

Once you have the compact you only need to buy the refills.

 I am now going to try a new company called Lyonsleaf for a new cleansing balm and moisturiser to soothe my reptilian skin.

https://www.lyonsleaf.co.uk/natural-beauty-balm?search=Cleansing%20balm%20&description=true

Hugs to all

Rosina

 

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Re: February starters 2019 - yes, we rule!

Daisydi, if what you have had is grade 2 I’d hate to think what a grade 4 is! Good news that you have seen the Onco now and have some answers. Xx

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Re: February starters 2019 - yes, we rule!

SusieB, I hope you will be on your way soon. It will be worth the extra wait when you finally get there.  Enjoy every minute. Xxx

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Re: February starters 2019 - yes, we rule!

Marilyn, chance of an empty house would be great if we ever get to leave the UK! We're stuck on the tarmac awaiting take off - flight delay of around half an hour or more🙁

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Re: February starters 2019 - yes, we rule!

Morning all

 

Just a flying visit as I snuck out of work for an hour and a half this morning to meet a pal for brekkie, which means I am now a bit behind and playing catch up Smiley Happy

 

Susie.... have a brilliant holiday!

And Seaside too on the way to the seaside Smiley Happy

 

And Sandra, you really do sound like you are at your wits end Smiley Sad  I hope you are getting some emotional support from somewhere.  I know you dont work for the  church any more but are any of your old friends from the church community still keeping in touch?  You need good friends around you at a time like this.  There is only so much we can do from a distance Smiley Sad

 

Catch up properly with you all later x

 

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Re: February starters 2019 - yes, we rule!

Morning all just been up to onc unit and actually saw a doctor.  My neutrophils have gone up to 1 so panic over on that one.  I now have so many lotions and potions. Doc said my reaction was almost certainly to T but only a grade 2 reaction. Grade 4 means they would stop so I will have to have another go but they are changing drugs etc. so hopefully I should get through it easier.

 

Have a lovely holiday Susie and Seaside Sar.  Hope all you other ladies are coping well.  I already have my radiotherapy dates planning is on 12th July with last treatment on 12th August then or during I will start taking Anastrazole.  Good luck for tomrrow Marlyn x

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Re: February starters 2019 - yes, we rule!

Morning all,

susie...have a smashing holiday, hope you can take advantage of having "an empty house" xx

 

sandra...what can I say? It does all get too much doesn't it? When I was given a list of everything that needs doing now I crumpled....it's just enormous isn't it....people are telling me now chemo is done I will be able to get on with me life....are they actually kidding??? I smile and fight the urge to give them all the grim details....they have no idea...but, the only way I can get through this is one wee step at a time, I'm not thinking of the biowhatsits, the anastrozole, the herceptin or the rads.....I will go in tomorrow and face what's thrown at me at that moment.....it's the only way xx

 

nettinoo...thanks for the heads up ref brush.....defo getting me one of them! Xx

 

rosina...me book on the walks came yesterday, what a great recommendation....thank you muchly xx

 

trixy...how you getting on love? Xx

 

daisy......hope the rash is behaving? Xx

 

seaside..have a lovely break Hun...we control our own weather...so you will be just fine xx

 

Well, what a morning I've had! Rent day today and it's taken me an hour to get it done ( usually it's 20 mins) and that was with a calculator! My poor brain really is suffering....

 

to all you beauties who have chemo coming up...good luck....we're actually getting through this aren't we....god knows how but we're bloody doing it...

 

i love you all.....as I'm in the unit tomorrow for 6 hours I apologise in advance if I pop up all the time on here....blimey....how am I going to kill 6 hours???? Xxxxx

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Re: February starters 2019 - yes, we rule!

SeasideSar, 

have a lovely time, a few days away will be lovely regardless of the weather. 

 

Thankfully ankles and leg swelling has gone down again. Looks like the area around my PICC is still slightly weeping, will keep any eye on it. 

 

Sandra, thinking of you both.

 

Susie, had a fab time away xx 

 

Edinbird, enjoy your rest today. 

 

 

 

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Re: February starters 2019 - yes, we rule!

SeasideSar, have a lovely time in Broadstairs. It doesn’t matter what the weather is like, the change of scenery will do wonders I’m sure. Xxo

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Re: February starters 2019 - yes, we rule!

Morning everybody,

 

Just when we think we're getting through this chemo crud, there's more trouble looming. Stark reminder of how much more there is to face. Oh well, one step at a time.

 

Sandra, it sounds like you're having a tough time but remember, we're here for you both. 

 

Rosina, we'll be having round 5 on the same day, assuming it all goes ahead of course.

 

Trixielady, how are you feeling after your treatment? 

 

Susie, enjoy your break. Hope you have a fab time.

 

Edinbird, it must be so hard having to go into work. You've done really well. Just rest when you can.

 

Sarah, likewise, remember to take regular breaks and look after yourself. Oh and did you hear the MK bid for the elite league failed? Disappointing but not surprising.

 

Daisy, how are you today? I hope the rash is clearing.

 

Marlyn, mine is left boob as well so I guess I'll start practising holding my breath. I think I'm having 5 weeks of radio. Can't really think about that yet.

 

MBJ, hope all went well with your visitors and that the hoovering was appreciated!

 

Sonia, how are you doing? Has the ankle swelling gone down yet?

 

Nettie, that's a pain in the wotsit that your treatment has been delayed. I hope it goes ahead next week for you.

 

As for me, I'm heading to the seaside for a couple of days. Yes, the weather is trying its best to throw a spanner in the works but this is my good week so I was a bit limited with timing. At least it's a change from the routine. Not sure what the wifi is like down there (Broadstairs) so I may be offline until the weekend when I'm back home.

 

Hope today is good to you all.

 

Lots of love

 

Sar xxx

 

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Re: February starters 2019 - yes, we rule!

Morning Sandra and Veronica,

what can we do to help?

Sending love and hugs,

Rosina 🌈

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Re: February starters 2019 - yes, we rule!

Nettie I saw this on the programme... it looked good for shorter hair but I was thinking I don’t know how it would ever have coped with my old hair! I guess that’s the point... it probably would cope with my thinned hair. I also thought I don’t have a problem with my current brushes and I can’t wait to use my old brush again! Was talking with my friend yesterday about what happens when new hair grows through all sticky uppy compared with the rest of my hair, and what if it’s curly?! I could end up looking a real freak! 😂 I’ll have to ask my other forums about when I can go to the hairdressers as the long bits will need cutting and I don’t want anything done to the rest that will make anything worse. Let us know how you get on with that brush.

 

Groundhog day here... sat in bed could sleep all morning don’t want to get up. Don’t have to go anywhere today though. Lower abdomen still sore am getting tired of it. Not feeling like doing work doesn’t constitute going off sick does it... oh well only three more work days before next cycle fingers crossed. Who thought you’d ever look forward to getting it?!

 

Will show you all my hairband and my new acquisition later when I’m feeling more lively xx

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Re: February starters 2019 - yes, we rule!

Morning lovelies,

I’ve ordered myself one of these brushes for when my hair eventually grows back. They are a bit pricey but for the folk who have retained hair,  albeit fragile, this brush may help with limiting any future hair loss. 

My daughter saw them on a BBC programme - The Customer is always right. The product won apparently. 

The brush was invented by the hairdresser husband of a lady who has suffered hair loss during chemo for breast cancer and when it grew back she was scared to brush it in case the new growth fell out. 

Anyway, have a google and do your research on them and see what you think.

https://mantahair.com/product/the-collection/

 

ps I think you can get them cheaper on Amazon or QVC. 

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Re: February starters 2019 - yes, we rule!

Sandra and Veronica, you have friends who care here. Please keep talking to us. Xxxx

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Re: February starters 2019 - yes, we rule!

Sandraindurham, you can do this. Keep talking to us. We totally get how you're feeling My heart goes out to you and Veronica.❤❤❤.  

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Re: February starters 2019 - yes, we rule!

Ocean21, We're on the right hand side of the plane so I'll give you a wave as we get level with your part of France. At least for a few days we'll be in the same time zone🕝! All the Best Susie B xxxx  

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Re: February starters 2019 - yes, we rule!

Hi girls, I can see that things are looking good! More pain, decisions on every step, medication that helps in a way and damages the other.

I am so so sorry!

Update on Veronica... Headaches, diarrhea, jaw pain, dry mouth, tongue bruised, throat still burned, dropping things, tired, varicose veins giving hell, scared all the time and with nightmares.

For most of the time I feel that I have moved to another dimension and there is no way out.

I was always able to control my depression and I have managed to hide from everyone, but I have not slept more than a continuous hour during the night and I am exhausted, so probably it is contributing for this dark feeling that is growing.

I think I will not be able ever to stop feeling an acute fear.

How do we cope with this?

I pretty much think that I cannot do it!

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Susie B

Have a lovely holiday, enjoy, relax and recuperate. Xx

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Re: February starters 2019 - yes, we rule!

Hi Everyone 

My goodness, all this talk of meds and side effects and we were just worried about chemo. You don't seem to hear of all this other stuff and it's side effects. It just never seems to end☹.

Anyway I've just popped in to say I'll try and keep in touch while I'm away. It maybe that I only give out hugs ❤❤❤❤❤❤ after I've read the posts, but don't be concerned if you don't hear from me for a few days, well until the 14th. I'll try and send some photos if I can work out how to use the camera on my new phone. 

Take care everyone and I hope that things improve for all of you who are having a rough time at the moment. We're all a lot stronger than we think and we can and we will get through this. I'll be thinking of each and everyone of you whilst I'm away. xxxxxxxx 

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Re: February starters 2019 - yes, we rule!

Hi Marlyn, yes I'm left boob lumpectomy and nodal clearance, but don't know how much. xx  

 

 

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Re: February starters 2019 - yes, we rule!

Hi ladies,

I am now going to have my first Bisphosphonates-zoledronic acid at 5 pm. My previous oncologist offered me the IV form. My current oncologist suggested the oral form. I don't know which one is better or more effective to protect me from fracture bone due to osteoporosis induced by cancer, reduced hormone, age or whatever. I chose the IV form as I am suffering from stomach gas. (Joy of chemo. I didn't even have 1 time stomach ache before any chemo) I am getting nervous...Smiley Frustrated

I have requested for vit D blood test. My current oncologist told me there is no blood test for vit D. He would give me a bone density scan. However, when I checked my pre-blood work for next cycle Heceptin+Purjeta. Only a blood test for calcium. 8-( 8-(

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Re: February starters 2019 - yes, we rule!

Well I’m in bed already. Trying to get my head around all these side effects and worries is too much!

 

Work was ok but I struggled to hold a one to one conversation which I can now evidence for occupational health when they come calling. Got some useful job updates and managed to get something rather special from our store cupboard before it gets blitzed and thrown in the trash.

 

Afternoon with my bestie which is generally intense so by the time I got home I realised I’d not eaten today and just had cups of tea... not good for me I know. As soon as I’d eaten I felt tired and then I realised I had both a pot of fruit and a bread and butter pudding that have today’s date on them so ate them too... feeling rather yucky now. Ok I caught up on lunch but not helpful!

 

So can’t try and sleep so soon after eating and feel bloated and uncomfortable as my lower abdomen still aches. A productive day but I don’t feel any better for it 😕

 

Got to start a new piece of work tomorrow so hopefully I can just power through and get a full day done then I might feel better.

 

On a positive note every liked my hairband. I must have been moaning about it as the last thing D said when I dropped him off was I look good in it. Not sure how good I look in it after that day and now in bed! Can’t get a good photo so you’ll have to wait until tomorrow xx

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Implausible band Marlyn

Don't forget that my decision to carry on with the bio whatsit is affected by the fact I could not complete my chemo regime. I feel that I should use everything else on offer to try to keep that Mountain Lion from bloody coming back or bringing his friends. 

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Re: February starters 2019 - yes, we rule!

There are so many decisions aren't there!

 

My onco went from "you really need to have this bisphosphonate" to "ah if you have bad teeth maybe not"....  so I'm not sure where to go from there.....   will get these 2 teeth taken out after chemo and rads are done and then see what the dentist thinks I guess?

 

I do have bad knees though so don't really want to risk my bones crumbling!

 

What a ton of problems all from one little booby lump!

 

 

 

Rosina, I also love hares (it all started for me with the Masquerade puzzle book in the 70s which I was OBSESSED with)

 

Just from where I sit, I can see this many hares and jackalopes among the art on my walls:

20190507_194347-picsay.jpg

 

20190507_194355-picsay.jpg

 

20190507_194403-picsay.jpg

 

20190507_194407-picsay.jpg

 

20190507_194410-picsay.jpg

 

20190507_194423-picsay.jpg

 

20190507_194442-picsay.jpg

 

 

And I have many more unframed in portfolios

 

 

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Re: February starters 2019 - yes, we rule!

  • Hi Daisyd,

Popping in to share my experience.

In 2011, I had an allergic reaction to EC during infusion in cycle 4. The first symptom was hive size, rash like color small bumps appeared on my hands. ITCHY ITCHY  I told the nurse and she immediately paused the infusion. The bumps gradually went down and infusion was resumed about one and half hour later but this time they added IV Benadryl. The nurse later told me I had a small reaction. Lucky they could act on it early before the reaction went to my trachea and I might not be able to breathe. I am not sure what they gave me. No more reaction on subsequent cycles.

Recently,  I got chemo rash as one of the T side effects. It happened about that night or the next day of chemo. No bump but rashes. ITCHY ITCHY It usually dried out just before the next cycle.IMG_1277.JPG

 

 

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Re: February starters 2019 - yes, we rule!

Mbj,

yes, so much info to digest! I have anastrozole to take ( think it's very similar to letrozole)....the side effects horrified me! I'm relieved to hear you've been ok, as of course in my overactive imagination I will be the one to have them all....I met a lady who had to stop herceptin as it damaged her heart...oh eck! 

I also have those calcium tablets to chew....they are huge....do you take it the same time as the letrozole? 

 

Paulus....we are glad of any input here, we welcome anything you have to offer.....xxxx

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Paulus

Oh no that was not my feeling honestly on here we give our best information based on our own experiences. I am the first one to say or worry about side effects. I had to stop chemotherapy after one go as I had severe neutopenic sepsis. So I had to weigh up the risks and benefits of that. We are all making such hard life changing decisions all the time.nits such a difficult situation for all of us. Everyone's experience puts a new piece of the puzzle together. 

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Re: February starters 2019 - yes, we rule!

Hello MBJ - I truly wasn't trying to put a point for or against bisphosophonates  -  it's just in the year that I have been on here since my diagnosis, I have encountered people who have had jaw/tooth problems, and that in turn made dental treatment become quite a major issue in their lives?  I'm not out for scaremongering, but the oncologist I met was selling her wares in such a way to make me feel inadequate and stupid if I didn't just accept her advice?  So the radiotherapist's input was rather refreshing - especially as they are all part of the same MDT. All the best.

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Marlyn

I thought I would say a bit about the Bisphoshonate. I had this infusion with my first and as you know only chemo. I am going to have it every six months for three years. Yes there are side effects (well of course), but I have osteoarthritis and have already had a right knee replacement five years ago. So I though the risk was worth taking. They do also help prevent cancer spreading to the bones in post menopausal women. So that sold it to me really. Here are some photos of the information leaflet for one I am having. My next one should be in August. Here they are done in the Tenovus caravan apparently. 

Also I am now taking the aromatase inhibitor Letrozole. There are a few different ones. I have to say that I have had no side effects from this at all so far. I waited until about 16 March to start taking them, a week after I saw my Onc and we decided to stop chemo. He wanted me to get over the sepsis first. It's just one tablet every morning and I also take a calcichew (sounds like a dog biscuit). There are so many decisions to make all the time and it's so important to make the right one for you, I think the more information we have then that should help to make an informed decision. IMG_20190507_175054.jpg

 

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Re: February starters 2019 - yes, we rule!

Bisphosphonates are for bone strengthening.  Their downside  -  and I am only saying this because I am 64, have dodgy teeth, and wasn't prepared to risk it  -  is that in 'rare cases' they can cause necrosis of the jaw bone.  So at my age, I weighed up my teeth falling out etc against further bone thinning  -  as we say, everything is a trade off.  I just think it's really important that oncologists explain that 'downside' of bisphosphonates so that ladies are aware, and can make a considered decision.  It was actually the therapeutic radiologist who ran that fact past me, and I doubt the oncologist I see would be quite as forthcoming.