December 2015 chemo

Public Archive
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Thanks Jen xxx ?
Left message for My Macmilan nurse. If she doesn’t get back to me by this aft I’ll ring my doctor.
I know exactly what you mean about eating!! I’m iff shooing Friday and plan to make a few dishes to freeze for myself. Though worry about fancying any of it as my sense of smell can be acute or nauseating!?! Ill try and get my bum shifted to go for walk even if just round the block!
Glad your hubby home for NY ??:relaxed: You have it harder than me Hun. Do you have family near? I don’t. I’m in north Scotland and family in South Wales!
Yes we must keep thinking we can do this! ??? Though, will this sinking feeling of what the future holds ever diminish? Folk say, oh it’ll soon be over and you’ll be ok… Um? Will I? Afraid to ask the odds on it returning!?
Up and down, down and up!..

 

BCN just rung back… Going in to see her this afternoon. ??

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Hi everyone,

 

day 8 cycle 2 of FEC and feel quite good today got out in the sunshine with my little dog.  Felt like I was drugged Saturday and Sunday, just really tired and out of sorts but on the up now.  It tricks you for the first couple of days making you think you are ok! At least Christmas Day was ok.  2 FEC down one to go for me then 3 Ts so moving along the bumpy path. I am hoping 3 is not my worst like Jen bless her.    Have had my daughter home from uni and that has helped keep me going along with my ever patient hubby.

 

Sam, Marina - have been wondering how you are coping with your hair loss.  It feels like ages now since I lost mine and wig is part of me.  I did forget myself this morning though and put shampoo in my hands.  Hope you are ok and managing it.

 

Best wishes to you all Gillian

 

 

 

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Hair still here but not touching it at all … and having been so against getting a wig, I have had a change of heart and ordered one over the internet! What with the hats and scarves this is all getting quite expensive!!

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Gillian
I’m being so sad as I’m afraid to even wash my hair now as comes out in fistfuls when I run my fingers through it . I am all prepared with wigs , scarves , hats etc but don’t want to look physically different if you understand . I don’t want people looking at me .
I like to just blend into the crowd .
I’m finding it so upsetting xx

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Thank you for sharing .
I do gave clippers ready but don’t feel ready myself .
When I’m out and about I’ve been looking to see if I can see any other ladies like me ( head scarves hats wigs ) and I don’t .?on here it’s great to get advice and share info with each other but in reality outside I feel alone as I’ll be different . Please don’t think I want more Women to experience this I just don’t feel ready to tell the world im fighting cancer.
Xxx

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Hi Marina, you should be entitled to a wig on the nhs. I have just been to a party and no one mentioned my wig at all it looks so real.  It does feel like a hat as the day goes on but I dont feel it makes me different to others,  I understand how it makes you self conscious but you do get used to it quite quickly.  We will all look back in the summer and our hair will be back :slight_smile: x

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Hi all, just want to back up what my October chemo buddy Karen says about coping with hair loss. I have not felt at all self-conscious about going out in one of my hats or turbans and have even had some nice comments about them from people who just think I’m wearing head gear because I want to (not because I have to). In fact there are some lovely items available although I am in danger of spending all the money I’ll be saving at the hairdresser and on hair products! I think it being winter time also helps as so many people are wearing hats now anyway.

 

Good luck everyone - you can all do it.

 

Ruth xx

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I was against wigs as I thought everyone would know it was a wig but I realize they are much better these days. And I don’t want people who don’t know me pitying me if I wear a scarf. Hence my change of heart. It still hasn’t really hit me as very little has fallen out but I guess tomorrow is another day …

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Hi ladies. Not been on for a while because of Christmas. Hope you all had a nice time. It has taken a while to catch up and I have made notes, lol.
Sorry if it seems a bit disjointed but here goes…

Hi Amanda. You’ll do ok with us xx

Gillian - my anti sickness tablets are Metroclopramide Hydrochloride 10mg 1x3

Tina - the injections are Filgrastim (Accofil) 30mu 0.5ml. I have to do these from the day after infusion for 10 days. I say I my fiancé does them while I pinch the tummy skin.

Nadz - with the cold cap I find I can’t concentrate enough to read and can’t get ear buds in to listen to anything. Just chat with others there. A spot of grown up colouring could easily be done.
I was also wondering wih your vein problems did they not think about a picc line? It will stop your veins getting tired and be easier for infusions.

Marina - I also have pain in my hips and lower back, so sometimes in my chest. I had been wondering about that too. Thanks Gillian for letting us know about the white cells. I am also terrified of my hair falling out. Think a little more in the comb today. Will be keeping my eye on it.

Teressa - yes mine is a neo adjuvant chemo (FEC-T) so my oncologist tells me. I am having mine post surgery but I am pretty sure that some give it before surgery to shrink the tumour before it is removed. I am sure the others will tell me if I am wrong or back me up.

Can’t remember who said about the water and chlorine taste if left out but I get that too.

SamB - No you are not silly and please don’t ever think that or that you are alone in feeling this way. I too am scared of washing my hair and the thought of hair loss.

Which brings me onto the fact that I had an appointment today with the 2nd and only other company my £120 voucher is valid with. I found a match but in no way can I afford it. It is a perfect colour match but £409!! Voucher doesn’t even pay for half of it! Some people are lucky buying 2 with the voucher. It sucks. Possibly having some shedding today, like I say keeping my eye on it. Next chemo is 8th Jan (would have been my mums 59th birthday) at 10:30.

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Thanks Red Robin, nice to hear from you… The surgeon seemed to think it would be a mastectomy but the oncologist did say if tumour responds well could be a lumpectomy, guess it’s a waiting game! Good luck for the 8th, I’m also having 2nd fec then. Xx

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Hi everyone, I wasn’t really expecting to be starting until January but I am pleased to join you (you know what I mean!) and have my first FEC under my belt!

 

Thank you red-robin, this forum has been so helpful, you find yourself moving through various threads as everything progresses!

 

Neo Adjuvant chemo is usually given to shrink the tumour, then surgery may be less invasive, so they might be able to do a lumpectomy instead of a mastectomy, for example. I went to my oncologist with two pages of A4 of questions, poop woman! If you want to know, ask away, I have always done and had pathology reports and everything, the chemo and breast cares nurses can help a lot. It depends how much information you want of course, but if something is niggling you, jot it down and ask away.

 

Here is a link to the ‘wig’ situation although you need to check for variations in you region; nhs.uk/NHSEngland/Healthcosts/Pages/Wigsandfabricsupports.aspx
I didn’t qualify for a free wig and my local supplier charged about £120 for my synthetic wig, and the NHS paid some, I ended up paying £67 for it. I haven’t worn it yet, once the hair starts going south, I will go down to the hairdresser who supplies it, get a really short back and sides (I look dire with short hair, mine is to my boob) and get the wig fitted and trimmed. I don’t know how much I’ll wear it, I imagine I’ll be on hats and scarves more, but maybe I’ll like it better than I think! This stage of waiting for it to go must be the worst bit I think! go (Like all the other waiting, tests, op’s, scans etc!)

 

I was given the injections to boost the White blood cells to do from day five after chemo. My eldest daughter is staying for Christmas and had injected herself a couple of years ago after her Caesarian section, so she did my first one and I did one last night, it was much easier that I thought and really didn’t hurt at all. I was told these injections could give you pain in the hips and lower back.

 

If you have any chest pains, don’t ignore it; phone the help line, it’s probably nothing to worry about but in my ‘Red Chemo Book’ it is listed as one of the things you should report immediately, just get it checked out then you don’t have to be wondering what to do or if it’s normal.

 

Love and hugs to everyone,

 

Amanda x

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I don’t think I can use my voucher online. I was told just these two places that are coming up with nothing I can get/use. Got to go for a flush in a bit. Still no community nurse space for me so got to do the hour round trip to the hospital. If not on before I’ll be thinking of you on 8th Tina and Teresa xx

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Hi Marina, I started my first chemo today, and just feel fuzzy headed, but otherwise not bad. I had the cold cap which was very icy, but if you can stick it for 10/15 mins, it does ease a bit. I had EC chemo. I am a very young 74, my daughter went through this three years ago, same lumpectomy and same side boob. She had a different chemo to me tho’. I think it helped me seeing how things might go for me. I am a very positive person, but I know it’s different and scary for some people. We are all out here rooting for each other, I am thinking of you, but nurses are amazing and have time to talk, everyone at the hospital are so kind. Lots of love and let’s get this sorted so that we can have a fabulous 2016.

Pam x

 

 

 

 

 

 

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Hey everyone
Round 2 for me today, feeling very anxious as I know what’s coming!
Just want to wish everyone a happy new year and hoping for a healthier one too!
Laura x x

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Hi all. Happy new year! I’m on say 7 of first cycle of FEC. And this has been the first day were my afternoon hasn’t felt like I’m living in some type of trippy world. My SE have been dizziness, muffled head like I’m seeing everything from a different place, muscle weakness and fatigue and very hard to focus. Nausea is there but in the sense as if you had a really bad hangover and only need to lie still. I’m getting headaches now, and upper back and neck pain. My sleep is full of nightmares but I do feel rested, just sore. Have only washed hair twice…red Robin, I did some colouring in during the cold cap, like you I couldn’t focus.I’m dreading doing it again though. My hair is short but curly so looks a mess when not washed each day! Im finding it difficult to shower…so I’m a stinky mess. Oh and sense of smell is on hyper drive. I’ve been very thorough with looking after my mouth but still get a bad taste. Surprisingly my appetite has been good. Though fizzy drinks seem to be the liquid that helps me the most. My partner has been making sure I get proper meals and if I need something to eat to help with SE it’s been a gingerbread man (perfect for this time of year!) Or a celebration chocolate…mainly a snickers which I don’t normally like but the others just taste horrible to me.
Sorry for the long tale, my mum is here helping me but we never talked much anyway and my friends are staying away until my immune system is on the way up. Plus been too hard to focus that I can’t reply to msgs.this has taken nearly an hour to write!
My partner is being posted abroad during my next cycle, only for a week but it’s got me worried, mum will still be here but she can’t cook or drive. Anyway. Hope you are all well enough to enjoy the passing of 2015 and embrace the new beginnings and strength of 2016 xx

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Nadz hang on in there it does het easier. At least your Mum will be company for you when hubby goes. I found everything bothered me from smells, and even could read a magazine, in fact just wanted to have a major throwing away session. Wanted to chuck enerything in sight out!!! Luckily didn’t have the energy to do it!!
I joined AUDIBLE, it is part of Amazon.co.uk and you can download audible books. I found Iistening to someone read you a novel helped although I missed chunks as I fell asleep but it didn’t matter. You can join to automatically spend about 8 poinds a month where they give you a credit each month to then choose a book. Then you can buy additional books as required. Just a thought for those spending time alone and unable to concentrate.
I have a stinking cold and next chemo (2) on 8 Jan. Am wearing a hat to catch all my falling hair, trimmer at the ready. Jan 1st and a new start might be the day.

Wishing you all a healthier and happy new year.
Marina xx

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How do I edit to correct spelling etc.?

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Hope everyone who had chemo today is doing ok.

 

A week after my first FEC and I’m doing ok.Tired and woozy and very disrupted dream laden sleep, but really nothing to write home about, so far!

 

Staying in for New Years Eve for the first time in years, and won’t be with my youngest (20) with us later as she is going out with her boyfriend ?

 

Anyway, Happy New Year everyone, have a good evening and let’s prepare to kick our C into touch in 2016!

 

Amanda x

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You must have had your first FEC on Christmas Eve, too, Lynne? I reckon sometime from 10th January onwards for my hair to go south!

 

I felt lousy for a few hours on the first evening but not too much since then. Tired and woozy from time to time…if it didn’t get too much worse than this…still, only time will tell!

 

The interrupted sleep is a bit of a pain though. I had steroids to take for three days but the munchies and sleepless got more pronounced after I had finished the doses, has anyone else found that? 

 

Hope everyone one is doing ok.

 

Amanda x

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Evening all! Hope your new years went well?
Marina did you go with the clippers today? The audible book’s sound like a great idea! Will have to get into that right away! Though will be on SSP so might ask it as a wee gift ? hope the cold is settling for you too, I’ve been the same with the wanting to throw stuff out! Luckily I had a clear out at the beginning and have been too weak to do any more. My partner completely reorganised our bedroom so it would be “chemo ready” he even moved the bed so that my side is closer to the door in case I need to dash!
Gfinch gosh you have been energetic doing the hoovering! I count it lucky that I was able to move clothes from the radiator! I’ve discovered a hot water bottle placed on my shoulders and neck when going to sleep helps so much. The pain has moved to lower back now though, radiating up and down, with a weird sensation in chest, like my rib cage tries to expand more than it could? My mum and partner thinks it’s because I’m just sitting around, but it’s a proper ache? And have been moving as much as possible.
Tandy4 SE twins eh?! I really thought I was going crazy. How come you went on antibiotics? I’ve just finished my injections today, I had to do loads for if prior to chemo so been doing it myself…think I’ve given myself a bit needle phobia though, I sit there fora good 30seconds with it just in me and can’t push it further then I finally get it. But still…hard work! I agree about the dry hair. I’m doing the cold capping (worse thing ever) and I don’t think it went all the way to the back of my head so if I do keep my hair I will have a brand new trend to set. I’m thinking 10th will be the day for body hair…looking forward to no waxing and shaving…bit concerned about lack of eyebrows and lashes?! Every morning I’m inspecting my pillow for hair and my partner gets skittish about touching my head in case something happens. Though he has promised he will still fancy me bald…which has been a concern. Maybe a silly one but it’s there.
Today was a good day, managed to play scrabble…though did near pass out from the concentration which seems extreme. We have all been sitting round watching movies all day. Partner returns to Base (over hour away) this weeked for a 48 hour shift, will be the first time mum and I will be by ourselves! She’s a bit concerned as she really can’t cook! Will be interesting!