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May 2017 chemo starters

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Re: May 2017 chemo starters

Mai, thanks so much for both links. The one on the IBC treatment protocol is very interesting, this is clearly the path that you and I are now on. In my case I don't know if I'll be able to have the radiation part because of my previous rads in same area, but one of the oncs did mention the possibility of some hi-tech targeted rads if they decide it's appropriate, only we have to get the surgery out of the way first! I do understand why you have to take it one step at a time, but my brain is quite into advance planning and I don't feel very comfortable not knowing what happens next. Of course none of us really knows, do we!
The diet stuff is brilliant, it's basically the kind of diet that is healthy for everyone, so even if it doesn't make any difference to the disease, it's got to be good for us! Thanks again,
T.
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Re: May 2017 chemo starters

Hello ladies, back from very sunny lanzarote! Had fab time and was just what we all needed! Now back to freezing cold weather and mountain of washing!

Got loads of posts to catch up on but have missed you all x
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Re: May 2017 chemo starters

It's very interesting Mai it's funny but when I found out one of the girls from work immediately mentioned the incident and hoping it's not related!
I'm pleased I'm not the only one with the bc anxiety of know that any can reoccur but I think TN has such bad publicity it doesn't help mind you my onc has never shown that much concern really the TN the only thing he didn't want to do was cancel off chemo when things went bit pear shaped instead opting for another drug
Like you have pointed out the tamoxifen doesn't come without its risks
I just think we a get sucked in by this thing with no time to really digest what is going on and now I am near the end of it in terms of chemo I'm digesting it all I still have my rads to come but know that's that once they are over!!
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Re: May 2017 chemo starters

MJK, I know how you feel, it can start to get overwhelming as you struggle to keep up with the thread. Enjoy quietening your mind with the social media break and take time to process everything you've been through. Xx

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Re: May 2017 chemo starters

MJK you know when you need a break don't you look after yourself and take care enjoy some you time xxx
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Re: May 2017 chemo starters

Hi everyone. Just to let you know I'm giving myself a month clear of social media, Facebook, forums etc as I find following a thread very difficult and need headspace. I'm doing well although sore, tired and chemo brained.

I hope thie coming month is a positive one. Mai, all the best with the surgery. Good luck to anyone having radiotherapy. X
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Re: May 2017 chemo starters

πŸ˜πŸ˜πŸ˜πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜˜πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ•Ίall thanks to you mai and the amazing May ladies and tatyana and mishy18 and the gun toting ladies on the Oct chemo train πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ’•βœ¨βœ¨βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Shi, well done on doing your injections yourself! πŸ’ͺ🏼Big girl pants are clearly on for you now! πŸ‘–πŸ’—βœ¨

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Re: May 2017 chemo starters

Mishy, that's interesting that's now three of us on this thread who had trauma to the BC breast 2 months prior to symptoms/diagnosis.  Correlation or causation is the difficult one because we didn't get tested for BC immediately before the trauma so there is nothing to compare against.  Btw, the anxiety is normal. I think it's because you feel that you are not being treated and monitored after such intense treatment and monitoring. Even though I will move onto tamoxifen I think they only reduce your recurrence risk by about 30% but they also carry about a 1% increased risk of cervical and endometrial cancer. I've downloaded the bcc BECCA app on my phone so if I get anxious I can read stuff, other people's stories etc!

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Re: May 2017 chemo starters

Tatyana, here's a link to info about anti inflammatory diet: (lots of leafy greens which are also part of the alkaline diet are also good - so you can search for both anti-inflammatory and alkaline diets.  If you go on Pinterest there are lots of recipes under these search strings)

 

https://www.webmd.com/diet/anti-inflammatory-diet-road-to-good-health#1

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Re: May 2017 chemo starters

Oh really traumas that is interesting where I work one of the residents became really agitated due to his alzheiemers and he punched me in my breast which was quit bruised at the time two months later I found the lump!!
I remember years ago hearing people say that injuries to the breast could trigger bx but to be honest I thought it was just an old wife's kind of tale 😲
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Re: May 2017 chemo starters

Heather I'm TN too so after this last chemo on Wed I'm on to rads then that's it, was chatting to my GP today when I went for pre chemo bloods about recurrence anxiety I explained I felt that coming to the end of chemo was of course brilliant but also scary it's kind of a security blanket knowing once the treatment is over there is no pill or injection I can have to keep it at bay and I'm just hoping that the treatment and surgery has been enough he explained these feelings are all pretty normal for some one coming to the end of chemo and that I have been caught up tonight a constant cycle of hospital appointments treatment etc and my subconscious is trying now to process it all!!!
He feels like more physiological support should be available during treatment to make sure we complete treatments without these worries
Have any of may ladies felt like this I feel like it's just a wobble as I have been fine up to now πŸ˜ƒ
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Re: May 2017 chemo starters

Heather, that's interesting. I was in a car accident 3 months before diagnosis but 2 months before symptoms started to emerge. I wonder if the seat belt trauma spread it and made it worse but also highlighted it when it was previously going unnoticed. So it may not have caused cancer and despite the risk of it being made worse it brought it to our attention.

 

Tatyana, I found this interesting article which goes thoroughly through the IBC protocol and is exactly the protocol I appear to be getting treated with.  This was a 2012 article so presumably medical research continues to agree with this protocol.  

https://www.mdanderson.org/transcripts/poe-ibc-surgery-role-lucci.htm

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Re: May 2017 chemo starters

Mai, I meant to ask: you mentioned an anti-inflammatory diet, I don't know what this is, can you give me some pointers? It sounds like a good idea, anything to slow it down before surgery.
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Re: May 2017 chemo starters

Mai, re boob trauma. My BC was IDC but in the same boob as I had an injury to about 2 months before I felt a lump. I got elbowed by one of my boys in exacting place where lump was before I knew it was there, as we lay in bed watching tv, it was more of an elbow and then full weight to hoist themselves up. I just think that if this hadn't happened I wouldn't have noticed the lingering pain weeks later and may not have felt more for the lump. I know my cancer was a different type to you but was still a trauma.

 

H

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Re: May 2017 chemo starters

Mai, yes it's surprising that there are two of us with IBC on this thread, it's nice to know I'm not alone, not that I'd wish this on anyone, but you know what I mean!
I don't really know anything about the cause. I didn't have any particular trauma recently. With my first cancer in 2002 I had a lumpectomy and rads. I guess that was a pretty big trauma at the time. It has crossed my mind that the IBC could be a long-term reaction to the rads, but I don't know if there's any scientific evidence one way or the other. Did you have any particular event that might have triggered yours?

I should say, if anyone is worried about having rads in case they end up with another cancer later, this is statistically really not a worry. If they recommend rads for you, it's because you have a better chance of disease free survival with rads than without. In my case, if I hadn't had the rads, the original cancer might well have spread or recurred much earlier. So even if it is linked in my case, I had 15 years of excellent health in between!
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Re: May 2017 chemo starters

Heather yep agree with using energy wisely post op, It is easy to go back at 100% as soon as you feel ok but wear yourself out very quickly - OH had to use the dyson for 8 weeks after mine, there was just no way of luggin that round the house at all.  Jay have a lovely meal.  Yep 2 fec in now, so 1 more fec then 3 t then onto rads.  Heather im tn too, so nothing after the chemo and rads for me to be on either, but do have my braca results in Dec, so might have to make more decisions later in the year again.  I am needle phobic no more, did my 1st injection myself this morning, 6 days casa nhs got me over the needle fear good and propper.  Hope everyones se's ease off and everyone who's over the finish line enjoy getting stronger day by day and everyone who has up coming surgery wishing you all the love and sparkles for a speedy recovery love Shi xx

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Re: May 2017 chemo starters

Treehouse, I too am finding it hard to keep up with everything but I think Jay got it right for those included. There is also MisyAngel on last T side effects and awaiting surgery. There are many others who were previously on this thread no longer active.

 

Tatyana, yes, I think IBC is quite rare but two of us on the same thread! *gasp*.  I read somewhere that years ago it would have been a death sentence but now treatment has improved to be more effective. I'm going to stick to an anti-inflammatory diet prior to surgery to avoid any flare up.  Out of interest, did you suffer any trauma to your breast prior to diagnosis? Just curious as to whether the IBC has cause and effect? Apparently little is known about it as it doesnt attract much research due to its rareness,  Did you previously have mx and recon or lumpectomy?

 

Im at work today. Everyone have a great day and take it easy!

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Re: May 2017 chemo starters

Jay car washing!!!!
πŸš—πŸš™
Wow. I still can’t lift the kettle. Nice to know it’s not far in the future.
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Re: May 2017 chemo starters

I agree with the "have energy, use wisely" advice. Its great to be over treatment but do little jobs not major ones!

 

After my surgery my Mum lent me her light Morphy Richards wand Hoover, great idea as it takes no energy to use and picks up those bits that are not worth getting the big Dyson out for or no one is around you to hoover for you! 

 

Boys go back to school tomorrow so its sorting out uniform and finishing homework day. Plus one car has MOT booked but DH has his name against that job.

 

Christmas and Florida planning are on my list for this week. Plus I start the Moving Forward course at Nottm City hospital on Weds am.

 

Still waiting to hear from work re phased return plans. Should have known it would take ages to sort out, I work for the Council so it must have gone to some kind of Committee for approval!

 

Heather

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Re: May 2017 chemo starters

Note to myself and other ladies post-op!

 

Being almost 6 weeks post-op and feeling pretty good, I thought yesterday, as the sun was shining I would make the most of it and clean 2 cars!  I started off by vacuuming the largest one, once finished I proceeded to wash and polish it - which I did - was a little difficult as although I have full use of my right arm - it doesn't like being stretched too far!! Moving on to the smaller second car - I decided my energy levels had significantly dropped so that had a quick wash with no inside clean!  

 

The overall result was one lovely sparkly clean car - one clean car and one very exhausted and aching me and one Husband who, upon returning from a quick trip with Son to town, was astonished I'd managed to do what I'd done but not impressed I'd worn myself out doing it!!!!  I then had to lay down for half hour before being in a fit state to cook dinner!!!  

 

So lesson 1, when you have the energy - use it - but wisely!!!!!  Next plan a little ironing Thursday and a little indoor hoovering on Friday!

 

This afternoon, my Sister and I are taking our Dad out to a posh hotel for slap-up Afternoon Tea - a rather belated birthday treat for Dad (it was his 75th birthday in May - say no more!). 

 

Wishing all ladies a lovely day and hope the sun is shininng as beautifully for you all as it is here again today!

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Re: May 2017 chemo starters

Morning Treehouse

Yes same as that in my house - they've returned to normal!! I too have no medical appointments this week - hooray! Tomorrow it's 6 weeks post surgery - that time has flown by in one way - yet dragged in another.

I'm awaiting rads (I think!) - I've got appointment next Monday with onc to discuss. I've also got appointment next Tuesday for my prosthetic fitting.

Apart from who you've already mentioned, the others I (think) can remember is; Trisha is having further surgery early Nov , Mai is having her surgery a week today, Rosie is having surgery in 3 weeks times, Daffodil and WolfEE are waiting rads and Heather, Katie and MJK are all over the finishing line but as you say chemo brain does not retain info and I may well have got this wrong!!
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Re: May 2017 chemo starters

Morning Rosie

 

Hopefully the medical team can come to a mutual agreement and get your anaemia under control quickly and hopefully it doesn't delay your surgery.  When is your surgery date?

 

My hair is just under an inch in length - very dark brown apart from at the very front where it is grey/white!  I don't mind too much just glad it's returned!!   I have plucked a couple of eyebrows this morning - my new ones seem to be returning very orange?(!) - bit strange.   

 

I do suffer a litle neuropathy in fingers and feet - but thankfully not enough to affect me too much.  Like you I do suffer with my feet after doing more walking.  

 

Have a great day - sunny (but chilly) today in our area!

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Re: May 2017 chemo starters

And they have all gone back to school/ work again. No appointments for me this week. The house needs a good clean but I will struggle. ( into week 3 post bilateral mastectomy and the hover has not moved!)
Where are we at now ladies? I struggle to keep up.
Shi is still having Chemo but I don’t think you are the only one. I think at least 4 of us have had recent surgery. And several are pre op. Who is waiting for rads? Who is going through? Who is out the other side?
Chemo brain does not retain info. I might have to go back and read the last 10 pages of posts.
Mai you are always good at this. Give me a round up.
X
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Re: May 2017 chemo starters

Heather, I hope your aches and pains settle down, just another of the nice chemo treats. As for hair, I'm still as bald as a slightly fluffy coot, no real hair, only chemo fuzz I'll just have to be patient!
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Re: May 2017 chemo starters

Tatyana I am triple neg so not on any hormone tablets so can't blame the aches and pains on that.

 

My hair started growing like a fuzzy peach after I finished 3 x FEC and just as I started my 1st T. Quite thick now and loving it short. Will grow it into a pixie cut but intend to keep it short, had so many compliments on how it suits me short as had shoulder length bob before.

 

My nails are doing ok. I have used nail varnish on toes from day 1 of chemo. Didn't stick with black but had glittery blue polish which lasted well. Just had clear polish on finger nails and despite ridges and white bands they seem not to be too damaged. 

 

H

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Re: May 2017 chemo starters

Hi May ladies, we have a newbie called buddyfan on Oct thread but doing t-fec, can someone please hop over to Oct thread to give buddyfan tips on coping with the t please, thank you so much the rest of us are fec-t or just fec and unable to help. Thank you very much and sorry to ask as I know you all want the chemo to be in your past now. πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Sorry tatanya not ferry I meant ref πŸ˜‚
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Re: May 2017 chemo starters

Hey everyone hope you have had a good day today the weather has been lovely Tatanya in ferry to hair as you know I still have last chemo to go this Wed and I have funny fluffy fuzzy type of hair all over now it stands on end and its very short!
The neuropathy thing isnt very good either mine has been awful on this new drug I get it in my side hand feet knees I had a spinal injury 12 years ago which had partially squashed my spinal cord which need a fusion in my neck with plates and a cage thing to hold everything together luckily my mobility fully recovered but I was left with some neuropathy mild which seems to have been aggravated with the T and this new stuff I know I used to take gabapentin for it but I kind of got used to having it so I stopped taking it if any of you are having trouble with it maybe it's worth speaking to your doctor ☺️
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Re: May 2017 chemo starters

Hi daffodil 🌼
Sorry to hear about your feet and fingers. My middle finger nails seem to be lifting πŸ™
How did your fluid look πŸ‘€. I definitely hVe some on both boobs but more on left and it feels odd, sloshing!
Surgeon saw it and said she would rather not stick needles in me if she didn’t have to. That may change next appointment. How did they drain it? 😬
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Re: May 2017 chemo starters

Hello all,

Sorry to have been absent but still waiting for internet to be connected at our new house. It is good to read how you are all getting on.

I also have peripheral neuropathy in my feet and 7 weeks post chemo they are still rather numb. 

I had a busy day on Friday trying to get my seroma drained as after my move I am 2 hours from my breast team, and eventually had to go via a&e to get to see a local breast unit to have 250 mph of fluid drained. Felt much better afterwards though. 

On Tuesday I have my appointment with the onc to arrange my radiotherapy. I am still hoping to be free of any more treatment by Christmas.

I need to get back to part time work in 2018.

Well done to those back in work and coping.

Hair slowly starting to grow but still a bit fluffy.

My thumb nails are lifting and will fall off soon. Another gift from T! It makes using my hands to do buttons, bras and jewellery difficult and opening anything nigh impossible.

Well, have a great week everyone. Hoping to have internet connected by Thursday. 

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Re: May 2017 chemo starters

Rosie, thanks for saying you think the neuropathy is improving, this is hugely reassuring, I thought it would never go away! I hope you get the anemia sorted, I'd have thought it was worth fixing this before surgery, you want to be as strong as poss.
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Re: May 2017 chemo starters

Yes isn't it cold,I've worn my hair short for many years but never realised how much it was keeping my head warm. Frozen head -- is this the real cause of chemo brain?😜
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Re: May 2017 chemo starters

Morning all, I  had peripheral neuropathy in fingertips for the last few weeks of chemo, but think it's starting to improve, I'm 4 weeks past last chemo. Have it in feet too and after I've been walking too long the soles of my feet are red and sore. Hoping it will all eventually go away.

 

I don't have much hair on head yet, its blonde( or possibly white eeek!!!) so the tiny bit that's starting to grow doesn't really show. Eyebrows and under arm hair is returning.

 

I've had some bad night sweats but went through surgical menopause in 2014 after oomph so not sure if it's a chemo effect. How long do menopausal symptoms last? I've had hot flushes for the last 3 years!!!

 

Am still anaemic, I think,  although currently getting conflicting advice from GP and hospital doing the recon. GP won't put me on iron  supplements as said stores are back to normal and we should wait but hospital say they're too low for such a big op and want me to start on iron. So I'm stuck in the middle and only 3 weeks to go. Got GP to agree to another blood test on Friday so we'll see what that is. I don't want anything to stop mastectomies going ahead after waiting this long

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Re: May 2017 chemo starters

Tatyana I first noticed some fine fuzz before my final Chemo. I now have about 3mm of proper soft dark hair and I am now 7 weeks since final Chemo.
I am not prepared to go out without head wear yet. Also it’s blooming cold.
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Re: May 2017 chemo starters

Mai, I'm also inflammatory, I think it's quite an exclusive club! That's why I'm not having a recon. The important thing is to get rid of the Alien. If I have to get used to being an odd shape,so be it.
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Re: May 2017 chemo starters

Morning Ladies! What a lovely day. Hoping to get out for a walk soon.

 

Im still taking Loratadine, one a day, but have pain in my knees - when I kneel down, the joints feel swollen and I need to lean on something to push myself up. I still have very watery eyes too.

 

Shi, hope your SEs are being kind and your neutrophils behave better this time. πŸ’—βœ¨

 

wolfEE, glad you are ok after your car ordeal. I won't be getting an expander. They want to keep an eye on the area for a year before they will consider any interference due to it being inflammatory BC.

 

Treehouse, glad your fishing wire has gone. 🎣

 

Hope you you all enjoy this lovely day. β˜€οΈ

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Re: May 2017 chemo starters

Hi Jae. its like tingling and pins and needles and sensitive to touch x
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Re: May 2017 chemo starters

Mai, painful nails and fingertips -- yeah, me too. Hubby's away for a few days so I'm hoping I can open cans with my ringpull gadget, but I had to fetch the scissors to get the cling film off a packet of cheese. Unscrewing a milk carton is a challenge. Ridiculous but true. I'm getting quite cross with the manufacturers, how do they expect little old ladies to cope? I like to think I'm not one of those yet, but I certainly feel like it.
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Re: May 2017 chemo starters

Treehouse, I bet you are well chuffed to have got rid of the fishing line!

Hot flushes -- oh boy, do I remember that. It's because we get a sudden onset of menopausal symptoms instead of it coming on gradually, it seems much more intense. Plus, All the usual remedies are off limits,eg black cohosh, soya this and that, etc, because they all contain oestrogen which is public enemy number one. I remember how deeply frustrating it was to hear menopausal friends comparing notes, knowing that I couldn't try those things even though my symptoms were worse than theirs!

It does get better eventually, trust me. Meanwhile, layers of bedclothes that you can throw off one by one and then put back later; same for clothes; a little battery fan; a bottle of water wherever you go; a mini perfume spray full of water to spray yourself; and always choose the seat by the window, so you have control, and if anyone complains about the draft, play the cancer card!

Also, avoid caffeine.

I know all these things only help a little bit, and sleepless nights are awful, so you have my sympathy. Hang on in there. and try and remember what period pains used to be like, at least you don't have those!
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Re: May 2017 chemo starters

Heather, enjoy York, and congrats on the new eyebrows! Ladies,how long after last chemo should I start looking for hairs on my head?

I was lucky with joints, touch wood... but I'm still taking loratidine to be on the safe side. Heather and other ladies with joint aches, are you on tamoxifen or anastrozole I believe most of the hormone therapies can have this as a side effect, but it should get better over time, if not then they might be able to try a different drug depending on the individual case. Always worth asking!
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Re: May 2017 chemo starters

Hi Treehouse great news your fishing wire has gone on its own, phew that must be a relieve and no having to watch out for your husband coming at you with the nail scissors anymore, it was nice of him to offer though wasnt it.... bit like when mine offered to buzz cut my hair off, eeerrr no thanks honey, I love you very much but I remember when I had something in my eye years ago, he nearly poked my eye out about as subtle as a brick.  I do love him very much and couldnt have coped at all without him.  Hope everyone is enjoying the blue sky and sunshine again today, not too bad for end Oct at all is it ladies.  Mai sending you hug and love you amazing wonderful lady.  and sending love and sparkles to everyone else too.  Heather have a nice time in York.  Love Shi xx

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Re: May 2017 chemo starters

Treehouse I’m sooooooooooo pleases the wire has gone. What a relief no tugging needed πŸ‘
I have my summer duvet back on and will look in2 the chill things.
The funny thing is apart from the episode with my back during my second T (worse pain ever) I hadn’t suffered joint pain or stiffness at all through the chemo I had gotten away lightly. For some reason this has all developed weeks after??
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Re: May 2017 chemo starters

Hey wolfee
The stitch has gone. Can’t find it in bra so must be on floor or down shower drain.
I am waking up 3 or 4 times a night very sweaty. Constantly throwing duvet off and on. I am ok not being at work but not sure about long term. Do you have a light weight duvet and chillow?
Joints are ok but then I had teeth issues instead. And migraines.
This Chemo stuff likes to keep us guessing even when it’s over!!
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Re: May 2017 chemo starters

My night hot flushes have gone away but I do occasionally get the odd one in the day. I go red then it comes on and goes away. I am a lot hotter atbnight and have to have the window slightly open at night, this was unheard of before chemo as I always had the bedroom window closed all night.

 

From what I have read pain in joints can last 6 months or more from the T part of chemo. It is something to do with bone marrow reviewing as it can get destroyed by chemo. Every ache and pain sets me off worrying but we have to just get on with our lives and manage pain with over the counter drugs rather than get addicted to prescribed drugs. 

 

When I go back to work I am planning on not sitting for more than 30 mins without a stroll around the office if I am still in pain. 

 

H

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Re: May 2017 chemo starters

Heather. Enjoy York xx

My left hip is hurting everyone I get up and move and when I get out of bed and try and get down the stairs I feel 90. My legs are stiff my knees hurt.
Does this go away? I’m hoping in a few weeks I won’t feel this any more?

What is bothering me at the moment is getting so hot at night. The last week or two weeks I’ve had my fan on all night. I didn’t even have to do that mid summer and mid chemo. It’s gettinf worse is that normal? I really can’t cope with this long term I hope this eases off soon or I’ll nevee function at work and normal living on no sleep.
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Re: May 2017 chemo starters

So yesterday was both a good and bad day for me. I’ll update later. Drove my car then it broke down!! Steering went and I had to use my bad arm with stiff scary car !!!
I’m ok though (don’t think the car is)
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Re: May 2017 chemo starters

Morning all!

 

Just about to leave to go to York to visit my Mum, haven't seen her since mid Sept as she went on hols then we went.

 

Anyone else suffering with joint pain after chemo finished? I have struggled a bit in the last month. Sometimes if I sit for too long when I get up I walk like a 90 year old, my feet and hips hurt. Then I seem to warm up after walking for a bit. I am trying to research more about it but I have started taking Loratadine hay fever tablets twice a day and it seems to help.

 

Have a good day everyone

 

Heather

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Re: May 2017 chemo starters

Treehouse 🎣
Yep I agree I’m not sure I could have pulled mine myself or allowed nicky to do it???? I’m happy now that I accidentally yanked it with the bra zip 🀒
Perhaps what you should do is let the shower water run on ir and see if the pressure makes it come out? But I’m not sure if it’s a bit early to have the shower directed on the wound?
Gosh I don’t know how brave your feeling because I don’t know if I could have followed my own advice but ............. maybe you should try and give it a little tug. Only a thought but the longer it’s left the tighter the skin will heal around it and the harder eventually it will be to come out ??????
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Re: May 2017 chemo starters

Mai. I know you don’t want 2 talk right now so no pressure just in your own time. But I’m wondering are you having the temporary tissue expander??? X