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AUGUST '17 Chemo Starters

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Butterfly

Yes what you're feeling is all perfectly normal. I don't think I bothered getting dressed for a few days!! It was just too much of an effort. Take it easy for a few days and you're gradually feel back to your self.

Sue xx

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Morning ladies. 

Treatment yesterday was ok, lovely nurse talked me through each drug as it went in and explained, extremely accurately, how I would feel! Steroid kept me on a high until 8pm when my head started aching. Went to bed early but didn't sleep very well. Good to know that's normal 😊 

Feeling a bit weird today, again good to know I'm not alone, but haven't actually felt sick which was my main concern, so I'm pleased the drugs are working. Trying to be kind to myself, and taking it easy. Can't remember the last time I wasn't dressed by midday, but got a good excuse now! 

I've read elsewhere that someone refers to this journey as a triathlon, which in my case is chemo, surgery, radio. I like the analogy and that it's a reflection of the different stages. Each one bloody awful and hard work in their own way. We will all deserve a medal at the end 👍

Hope everyone else is managing ok, and getting the support they need. Thank you for all your posts, it is hugely reassuring. Xx 

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Fairy and welcome to the thread. There are quite a few ladies on here that have now started chemo and I hope you can all support each other through it. Please ask if you have any concerns or worries.

Sue xx

fairy
Member

Re: AUGUST '17 Chemo Starters

starting chemo monday, hair cut into a pixie style tomo and looking forward to startin the process of gettin rid of this cruel c thing! hope all you ladies are doing well x
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Morning Ladies

I hope everyone is fine today?

Butterfly how are doing after yesterday?

Good luck to Sue and Helen today. You will be fine x

And welcome Claire. We hope to support you along the way. I had that same reaction to the drugs. It did improve during each cycle. Also, I found it difficult to sleep for few days, but that's the steroids, so that will improve in a day or two. Keep taking the anti sickness as well for a few days and  that will also improve. 

Do you have any help with the children this week? You may need it!!

Best wishes

Sue xx

Sib
Member

Re: AUGUST '17 Chemo Starters

Good luck Friday chemo ladies. Every treatment done is a step closer to the end. Sending positive vibes and hugs. Xx
ClaireH81
Member

Re: AUGUST '17 Chemo Starters


Hi everyone,

First time posting here (or second if you count where I just posted this by mistake 😳😳😳) so sorry if I ramble or anything!!
I'm 36, 2 kids 3yr & 1yr old, when I'm working ima nurse (only made it back for 4 weeks after having 13 months mar leave 😬)
I was diagnosed on my birthday in June, brilliant response from hospital within 13 days if had all investigations etcabd was in having lumpectomy & SND. Grade 3, no lymph involvement 1.8mm so got it early!
I started my chemo yesterday I'm having 6 rounds of EC, then some radio. It's Er -ve, HER2 -ve, Pr+ve...they've said prob some anti-hormone treatment but not specified which yet and still referring to genetics as some family history.
The 2nd drug made me really dizzy/woozy they had to lie me flat 😳 & took the full 90 mins of remainder of cold cap for me to come around...hoping next time I'm better than that.
Ive felt blurghhh so far (no other word to describe it) nauseous but not sick, head achy and can't sleep.
I used the cold cap today...extremely hard going but will try to persevere if it works fab...if not hey ho! Also saw the wig lady who ordered me a couple to try in my colour/style.
I've got my anti emetics, mouth wash, injections for next weeks & steroids to take morning of my next dose...
I've read loads of posts on here and find them all helpful and inspiring!!! Xxx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Thanks Helenp ..hope all goes well tomorrow for you too...and butterfly..hope all went well this afternoon for you xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Sue.

Shopping done, washing done, collected bits and pieces together that I might want by me. Taken first anti nausea pill, so it's feeling real now! Not long until I leave, will let you know how it goes. Xx

HelenP
Member

Re: AUGUST '17 Chemo Starters

Thanks SueC
x
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

That's great Helen. So pleased you feel more confident with the wigs. And you sound quite positive too.

Good to get organised as you may need to take things easy for a few days. Stock up the food cupboards ( including chocolate! although strangely I had a craving for sausage sandwiches!!) and sort out the washing. Then sit back and let others look after you.

Best of luck for tomorrow.

Sue xx

HelenP
Member

Re: AUGUST '17 Chemo Starters

Good morning!

Am overwhelmed with the supportive and helpful comments on here, thanks all.  

Well I went kicking and screaming to my wig appointment yesterday with my best friend and hubby, ready to cry throughout.  It was fantastic!  Heather, the consultant wears wigs for 'fun' so it was a great icebreaker when she showed me proof that it was indeed a wig!  I was totally at ease and genuinely feel the wig I've chosen is a great match to my actual style and colour and can really see myself using it whereas yesterday I thought I'd buy one and leave it in the box...so much so that I'm considering not bothering with the cold cap tomorrow.  I really didn't expect it to be a pleasant experience but I feel totally different about wearing a wig now, before yesterday I was only looking at headscarves.  I took some scarves with me and the ladies showed me how to tie them so that was really useful too.

Well Sue58, we dive into the chemo together tomorrow then.  Today I made a list for my 'chemo rescue kit' so am making a trip to Boots is this afternoon so that I've got everything I need to make things easier.  There'll be plenty of room for chocolate in the box too!

Good luck Sue58, speak tomorrow.

 

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Morning ladies

Hope you're all doing OK?

Best of luck to Butterfly today. I'm sure you will be fine and let us know how you get on.

Sue xx

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hugs to all the August ladies. Strength in numbers 😊 Xx

Sue58
Member

Re: AUGUST '17 Chemo Starters

For every one who is going through chemo this week and this month. Good luck to you all , I hope everything goes well for you all...its another step in our cancer journey..one we have to take even if were not sure how we will cope...but somehow we find our inner strength and get on with it...even though inside were a mushed up mess..!!! Good luck ladies, let us know how you did...xx. Big hugs to everone xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Thanks Mary-Kate for your lovely reply.. lets hope this time tomorrow my head will be well frozen and the chemo regime will be going in my arm ok..!! Will keep you posted. Xx. Big hugs
Mary-Kate
Member

Re: AUGUST '17 Chemo Starters

Hi Ladies

 

Sib - I hope your mouth is getting easier now, that sounds uncomfortable but looks like you've had some good advice.  

Ali - I hope you're going on OK and are feeling well after resting.  I'm doing OK, I keep feeling like I've got lots more energy and then the fatigue hits you.  You just have to go with it, don't you?  Most of my nausea has gone now but I’m still quite fuzzy and headachy.  I’ve been able to do a couple of short walks and it’s good to get out in the fresh air for a bit.  And I’ve manged my daily injections now, although they did say you don’t have to if you don’t want to – I just didn’t want the tie of the District Nurses coming in every day.

 

Well done Ali for choosing your wig - it's a hard decision, isn't it?  I found going for my wig-fitting quite overwhelming with over 200 wigs there, some very scary!  Decided in the end with mine to stay longish and blond as I am now, need to feel sort of similar to how I am now.  At least it's one thing I can still be in control of...  Also decided to have all my own hair cut off soon which’ll be hard to do, but I'm sure it'll be more manageable than having long hair falling out – and even though I'm trying the cold cap I'm sure I'll still lose a fair amount.

 

Hello Helenp, Butterfly, Soworridl and Sue58 - I hope we can all support and help each other along the way as we all go through this right now.  This time last week I found the thought of starting chemotheraphy very surreal and daunting but the reality, so far for me anyway, hasn't been as bad as I thought - although it's still early days as I only had my first treatment on Saturday.  It’s the fear of the unknown that’s hard.  I left the hospital afterwards much calmer than I had gone in, knowing I’d got through the first session and with more of an idea what to expect next time.  The Chemo nurses are so reassuring and experienced and they help you cope with it all.

 

I hope your treatment has gone OK today Soworridl.  And good luck for Thursday, Butterfly and Helenp and Sue58 for Friday.  Let us know how it goes for you all.  

Hope the cold cap goes OK, Helenp – I found it bearable after I got through the first half hour, but was pleased I took in a fleece blanket to wrap up in as the rest of your body feels so cold as well…

Sue58
Member

Re: AUGUST '17 Chemo Starters

Hi Helenp,
I'm also having my first FEC T chemo on Friday 11th August. I'm in at 9am ,I'm very anxious, but also glad to get this chemo session done with so I will know what to expect for the rest of them . I'm also going to use the Paxman cold cap in the hope of saving some of my hair... I had my lumpectomy 21st June with full lymph node clearance then ended up with cellulitis in that boob and my chemo was put back a week so I could get fully fit...
I also work in a school as a teaching assistant and hope to get back in January/ February to work, all being well..hope all goes well on Friday for your first chemo. And hugs to other August chemo ladies going through this right now x
Anniej
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Sowirrid, I had EC too. It is very worrying when you don't know much about it. I found the procedure itself painless. The nurses were very kind and very experienced . I had excellent anti nausea medicine called Emend, and would definitely recommend that. The steroids get you a bit hyper, but don't last for long. The side effects vary. I didn't like being so sleepy all the time, and there is a chemical fuzziness similar to being drunk, but who hasn't been drunk? The plus side is I got out of all housework! I know it's hard, but what is the alternatives? I've got four beautiful grandchildren and I want to see them grow up if I can. You will be very well looked after with loads of medicine to help you cope . I'm wishing you all the very best. 🍀 X

Sib
Member

Re: AUGUST '17 Chemo Starters

Sending you a hug. No one wants to have chemo. It isn't as bad as you think, each one you have is one closer to the end. Remember the sun always shines after the rain!. We are all here for you. Let me know how you are.

Shirley xxx
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

I was there for approximately 3 hours, but that may depend on your meds. If you cold cap, it will take a little longer.
Will you have someone with you? It's nice to have moral support, plus someone to make you a cup of tea xx
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi
There is no need to be worried. It will be no where near as bad as you think, I promise xx
Please join the ladies on here and share your worries and concerns.
Let us know how you get on and we will try and help as much as possible.
Sue xx
Soworridl
Member

Re: AUGUST '17 Chemo Starters

I am starting EC chemo this afternoon. I don't want to go... help me 😞
Sib
Member

Re: AUGUST '17 Chemo Starters

Welcome Butterfly, good luck for Thursday. Im E+ and HR+ too, so face Herceptin and tamoxifen treatment after/during my Chemo.
I'm dreading losing my hair but have wigs in place and am actually happy with them (or as happy as I can be) this is not an experience that any of us would choose, but we will get through the ups and downs together, hopefully still managing to smile on the way. Xxx
Sib
Member

Re: AUGUST '17 Chemo Starters

Hi Helen, good luck for Friday I'm on FEC for my first 3 , had 1, last week, and managed though was a bit sick. I'm trying get to stay positive by thinking side effects mean treatment is working! (not always easy).
Work thing isn't easy, I had only been in my job 7 months before diagnosis , I'm hoping to work from home some of time during chemotherapy to help.out financially. Macmillan are very helpful about financial matters but unfortunately it seemed for me the government offer very little help..
The forum is very good and will be your sanity during the days ahead. I'm a very private, independent person but on here I can express my fears and get support without upsetting family. Hugs. Xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thank you Sue x

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thank you Ali x

Sib
Member

Re: AUGUST '17 Chemo Starters

Hi Ali, I phoned 24 hour cancer helpline about my mouth (not sure if this is national or just a Scottish thing) they advised me to see GP who had me in within 30mins , I am totally amazed overall at how quick and efficient my whole experience has been .
I have eaten my dinner tonight so mouthwash is working.
My wigs (I have 2) one nhs and bought one. One is very like my own hair, matched colour exactly to my highlighted shoulder length hair and they will cut my fringe to match mine. Other is shorter, sassy style again my colour but more dynamic (I've called it Erica!) she will be for when I want a change and feel more confident changing hairstyles . As I have long thick hair I have been advised it could take18months to get it back to length it is now. X
Ali S
Member

Re: AUGUST '17 Chemo Starters

Hello and welcome ladies.

Helen, I am also triple negative. I'm having chemo first before the lumpectomy and I was only diagnosed 3 weeks ago. The chemo started so quickly that I'm still having all my tests done with an MRI booked for tomorrow. As Butterfly said, you will be surprised by how good some of the wigs are. I'm sure you will find one that you like.

Butterfly, good luck for Thursday x
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi butterfly and also welcome!

I hope we can all help and support each other along the way.

Hair loss is definitely a difficult side effect, that's for sure. Preparation does help, whether that's organising a wig, buying scarves or getting hair cut short. Take control as much as possible. I know everyone says this, but it will grow back. I opted for scarves, and after 4 months of completing chemo, I was able to throw those scarves away!

Good luck for Thursday and , again, I'll try and help where I can.

Sue xx

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Helen and welcome to the forum.

I hope that I, and the ladies on here, can help and support you as much as possible.

I'm sorry that I don't have any knowledge on triple negative BC, but there is a thread on here that specifically deals with that.

The thought of chemo is far worse than reality. You will be able to do this, just cope with one day at a time.

Hair loss starts about 3 weeks after chemo begins. I  had various scarves ( wigs just weren't for me) which are a good idea just because they can contain the mess!

In terms of finances, I think Macmillan are really good with that, so take a look on their website. Again, there is a thread specifically on here that deals with that.

Best wishes for Friday and please ask if you have any other questions .

Sue xx

 

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hi ladies, I too am starting this week, doctor tomorrow, 1st chemo Thursday. It's all getting a bit close now!

 

I have 4 rounds of EC then 4 rounds of Docetaxel with Trastuzumab and Pertuzumab, before surgery and radiotherapy. ER, PR, HER2 positive hence the long list of drugs. 

 

Had to cancel a trip to NY sadly, but I'll get there again once all this is over. 

 

I too was sceptical about a wig, and decided I would just stay indoors for the duration, but have to admit I was pleasantly surprised on Monday once I had had my appointment. Some looked awful 😂 but there was one that actually didn't look too bad. It's weird because we don't spend all our time looking at ourselves in the mirror, it's more how others will view us and so I took my mum for support which really helped. Making the decision to order one, made me feel so much better last night, that I had taken control of a situation that has been completely out of my control so far. 

 

Thank you all for sharing your stories, it's great to know I'm not doing this on my own. 

 

 

HelenP
Member

Re: AUGUST '17 Chemo Starters

Hi there August ladies, this is my first post and having spent half an hour reading your posts I'm already feeling less anxious, so thank you!  

Am starting FEC chemo on Friday, and am seeing my oncologist tomorrow for bloods beforehand. Had a lumpectomy in June with no nodes involved.  I have triple negattive BC, found during a routine mammogram as I'm 50m this year and was sent an appointment to attend the Breast Test Wales clinic - thank goodness for routine screening eh?!  They told me only 70% of women attend their appointments, thank goodness I did!

 

I got to go on hols before treatment starts and got back on Sunday, and boy has the reality hit me since then.  Have been in tears for two days on and off.  Have a wig appointment tomorrow even though I don't think I'll want to be seen wearing it, hubby has been amazing and is convinced I'll feel differently when I see how good they are, here's hoping.  

 

Am pretty down about it all really, I'm a primary school teacher and when diagnosed was in the middle of job interviews for September as my current position was ending in July.  Now I find myself without a job.  Such bad timing!!   Does anyone know if I can claim some kind of sick benefit for the duration of my treatment?   I prob won't be able to look for work until after radiotherapy in January/February.

 

It's great to be part of this forum, you're such a supportive bunch.  xx

Ali S
Member

Re: AUGUST '17 Chemo Starters

Hi Sib, glad you have something to help with your mouth. I'm impressed that you saw your GP so quickly, mine would be a 3 week wait, they are hopeless. I might try your idea of the honey with water and lemon as I really hate the taste.

My wig is similar to my own hair. Same colour (well the colour it used to be before I had to dye the grey), a bob like mine but it has a fringe which I don't usually have. I did try a a platinum blond one on for style (I'm chestnut brown) and It didn't look as bad as I thought it would but it wasn't me. What did you go for? xx
Sib
Member

Re: AUGUST '17 Chemo Starters

Rest up Ali, had to get mouthwash from GP for my mouth as tongue and throat were swelling, (despite manuka honey 20+, I take it in warm water with lemon) mouthwash has made difference to swelling and can eat a bit now.
Did you choose a wig like your own hair or go for something completely different? Xx
Sib
Member

Re: AUGUST '17 Chemo Starters

Hi AnnieJ , using baby toothbrush and manuka honey 20 +each morning in warm water. However tongue was swelling today, with inflamed throat so saw GP who prescribed difflam mouthwash, which has made a huge difference after 3 uses, managed to eat some soup and a soft roll. Thanks for all tips it's so good to know you are not alone. Xx
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Ali

You will feel tired for the first week so take it slowly. You are already doing far more than I achieved.... I didn't leave the house for a week!

I found once I'd finished those injections, I was ready to get back to normal xx

Ali S
Member

Re: AUGUST '17 Chemo Starters

Hi ladies. Glad you are both doing ok. I'm feeling very tired today so am back on the sofa but I have been and picked out a wig so have achieved something. My mouth is a little sore and furry too Sib but no ulcers yet. I'm trying Manuka honey to see if that helps (although I hate the taste).

Mary-Kate, I was originally told I would only be having the injections for my last 3 sessions but I was sent home with 5 this time. The lovely chemo nurse showed my hubby how to do it and he has managed very well so far. xx
Anniej
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Sib, dipping in from May thread. I avoided mouth ulcers and oral thrush , and I think it was because I took 1 teaspoon Manuka honey every day. I used 15+ and over which isn't cheap! My dentist advised me to use a child's toothbrush as they are softer, and I used aloe Vera toothpaste. She also had no objection to me continuing to use Corsydyl mouthwash so long as I didn't have ulcers. You might have already tried these? 

Re gsf injections, I'm a real wuss with needles, and when I tried to do my own apparently I nearly passed out! The community nurses were great and came every day, but it is tying as they didn't come until lunchtime. The hospital organised the CN as they wanted to be sure it was administered properly and all the gunk went in. I admire anyone doing their own. My CN advised walking to combat the niggly pains after the injection, and it did work for me. X

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Also re. injections....you can ask the community nurse to do them for you ( although mine were not very keen! ) or if you are able, the nurses at your surgery will be able to help.

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Morning ladies

Sib , I found the nasty taste in mouth only lasted a few days. So hopefully this will go very soon.

Xx

Sib
Member

Re: AUGUST '17 Chemo Starters

Glad you are doing ok Mary Kate. I don't have to do injections (yet) think they might be with my second 3 sessions of chemo and not sure I will be able to manage it!. But like everything just now I just take it one day and one stage at a time, the future is just too scary to look into at moment.
Don't worry about getting out and about, we are all different and I am just doing things as and when I can . Take it easy, listen to your body, it's fighting to get well
for us, so we need to listen to it when it says slow down!
I've got mouth ulcers and nasty taste in mouth for last 2 days , another lovely side effect!. But managing.
Hope you are OK Ali.
Sending hugs to all. Xx
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Mary Kate
Good to hear from you!
Days 2,3,4 are probably the worse, so hopefully you will start to feel better as the week moves on.
I didn't enjoy those gcsf injections! They spring those on you at last minute don't they?! I was too much of a chicken to do them myself and really had a battle to get the nurse to come out and do them. So in the end a friend/nurse kindly helped me. You may find that you get some bone/joint pain with it, but it is short lived. I just took ibroprofen and it was fine.
Take it easy for a few days.
Sue xx
Mary-Kate
Member

Re: AUGUST '17 Chemo Starters

Hi Ladies

My first Chemo on Saturday went well thanks.  1 EC-T down, 5 more to go!  Just so glad to get the first one out of the way and have a better idea what to expect the next time.  The Chemo nurses were brilliant and so reassuring.  I managed to tolerate the cold cap OK, even though it was -3 degrees, my head seemed to go numb after a time!  No idea if it'll have any effect though and it does add a couple of hours to the treatment.

 

Had a bit of a rough time since, quite nauseous, dizzy and headachy - I've just been resting and taking it very easily, taking all the anti-sickness drugs and drinking plenty of water.  Felt much better today, fuzzy as you described it, Sib and Ali.  A bit of surprise about the daily white blood cells injections, had the District Nurse out yesterday to teach me and eventually mastered it - another little hurdle to overcome in this new world we've found ourselves in.

 

Sib and Ali, you both sound like you're doing really well, hope that's continuing today.  Can't believe you're both up and about, well done!  You've spurred me on to hopefully do that tomorrow!  It's really good to talk to other people who are going through this at the same time, so we can support each other, although I'm sure we'll all have some differences along the way...  

 

And thanks Sue, for all your supportive and helpful comments, really appreciate them.  Good luck to the other ladies on the August thread who may be starting Chemo soon. xx

 

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Mary Kate

How are you doing today?

Sue xx

Sib
Member

Re: AUGUST '17 Chemo Starters

Great Ali, glad you are doing ok, getting out takes your mind off things and it definitely lifted my spirit. X
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Ali

That's great! Take it easy now xx

Ali S
Member

Re: AUGUST '17 Chemo Starters

Hello, I'm doing ok today. Reading that you have been out and about Sib I decided I should also get off my sofa! So I've been to the cinema with hubby and made some dinner. Back on sofa resting now though xx
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

That's great Sib! Sounds like you're back to normal. Hopefully you will now be fine until the next cycle. Xx

Sib
Member

Re: AUGUST '17 Chemo Starters

Welcome Mary Kate, hope you are doing ok? How are you Ali? I too had fuzzy head ( and stuffy nose) but straight after chemo, it went within hours though.
I'm doing good, managed out on Friday for a bit of look round shops and had virtually normal day yesterday, bit of housework, grocery shopping, collected my wig and made and ate dinner!! Just decided, against my normal nature, to go with this, when I feel good to do things and when I'm bad to stop and take it easy. I'm normally a bit of a martyr but not during this fight.
Thanks Sue and all for your supporting comments it really helps.
This is a battle we must win.
Hugs to you all. Xxxx