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October 2016 starters

Sus12
Member

Re: October 2016 starters

Thank you for your encouraging words Ruth. It's good to hear you are feeling so well now!
I heard about The Haven but sadly for me they are concentrated in London/southeast mostly and I know there is one in Hereford and Leeds but even Leeds is a 3 + hour journey for me. They look wonderful and I'd love to be able to get to one but there's no chance with the distances involved. There's only been one well being day about three quarters of an hour from where I live which I got to and which was good but there's been nothing else since my first recall months ago and nothing planned for the foreseeable future. It makes things a bit tough when we could all do with something like the Haven etc every now and again through all this stuff we're dealing with. Shame there can't be more around the country.
Sue xx
Sus12
Member

Re: October 2016 starters

Thank you Hazel. It'a a strange situation being excited and looking forward to the wedding but knowing that the chemo is following..... However, I'm definitely putting the impending chemo out of my mind as much as possible for at least this weekend!
Maybe I'll ask my doctor for a letter to allow me to have massage therapy. I do think that it all needs discussing more widely. There seem to be quite a few things regarding BC that the general public could do with being made more aware of and being better informed. It would certainly help us who are going through it.
Sorry to hear you are having to go through another diagnosis and treatment Gracie. You sailed through the last treatment, so hopefully you will sail through this :). Lots of hugs.
All the best for everyone starting their chemo tomorrow.

Sue xx
PeggyCat
Community Champion

Re: October 2016 starters

Hi Gracie,

 

I did the induction day at The Haven in January this year and have also had some treatments there. I had three sessions of counselling which I found to be excellent and hugely helpful. It's a very tranquil place and I've met some very nice people there. I highly recommend it. The only downside is that there is a Whole Foods store nearby and I've spent a fortune there on my visits to the area. Smiley Happy

 

I'm from the October 2015 group. This time last year I was a couple of days away from my first chemo. I am now feeling pretty well and enjoying life. You can do it ladies. 

 

Ruth xxxx

haz25a
Member

Re: October 2016 starters

Hi Sus12

 

I know a lady who had BC in 2014. She is also the owner of a beauty salon/spa in a well known chain of posh hotels. She told me you couldn't have a massage unless you have a letter from your doctor. Presumably for insurance purposes.

 

Have a great day on Saturday! Congratulations and I hope the weather is fine for you.

 

Hazel.x

Gracie
Member

Re: October 2016 starters

Thank you Jo, that's interesting that your friend found it easier having more frequent doses.

 

Also, Belle, I see that you found EC easier than FEC and that EC is becoming more popular. Honestly, I haven't a clue what I'm talking about, but hopefully it will all become clear.

 

Ive just booked myself into an introduction day at the London branch of The Haven. Has anyone tried it? I've heard very positive stories about it

 

Gracie

x

Belle
Member

Re: October 2016 starters

For me personally, Joandthetribe, definitely. Huge improvement.

B x
Joandthetribe
Member

Re: October 2016 starters

Hello Gracie. So sorry you are having to go through this all again a second time - let's hope this time the chemo blasts it for good!

I was reading yesterday on another thread about a lady who has having chemo every 2 weeks, although can't remember which thread it was. I'm sure another forum member will be more helpful than me!! My friend also has a triple negative tumour and is in the middle of 12 weekly chemo sessions - it would appear different areas treat it slightly differently. I believe her dosage is about a third of the strength of the 3 weekly doses, and other than feeling progressively more tired has suffered very few other side effects. Still, no walk.in the park by any means.

Sounds like you are very organised and have got your head around everything as much as possible.
Gracie
Member

Re: October 2016 starters

Hello everyone. Another newbie for the October club here. I'm 57, married with three teenagers - all living at home. I was diagnosed with oestrogen positive BC last September following a routine mammogram. It was caught very early and I managed to get away with a WLE plus sentinel node removal and radiotherapy. I pretty much sailed through it and then threw myself back into work at the start of this year.

 

Unfortunately, as a result of my first annual check up, I was diagnosed with a new primary in my other breast. Again it was caught early, but it is triple negative this time. I don't fit the normal profile at all, but here I am. I have had a further WLE. One node out of 19 removed was affected.

 

I start chemo on 26th October. I'm having a port fitted as I have had nodes removed from both sides. The oncologist said that it would probably be ok to use my right arm as I have had just the sentinel nodes removed from there, but I'm terrified of getting lymphodeama in my right arm as I use it an awful lot!!

 

My treatment plan is 4 x EC at fortnightly intervals followed by 4 x Taxol at fortnightly intervals. The oncologist called this an accelerated procedure and said it was  fairly new in the UK, although it has been used for quite a while in the USA. Does anyone know anything about this? Ive been reading up as much as I can. I like to have the relevant facts at my fingertips, but I feel I need to step away from Google for a while as it all looks quite grim.

 

I have had my hair cut short and seen the dentist. I have an appointment for an ECG and the flu jab and have all the info about getting a wig. I'll be going through these threads to find other tips to prepare. I've been fairly upbeat up until now when reality is sinking in. I think the main issue is that I don't feel ill at all. It all seems surreal that I'm going to have to go through this. I'm sure you all feel the same.

 

I'm so sorry for hat all you ladies find yourselves here. I hope we can help pull one another through.

 

Gracie

x

Joandthetribe
Member

Re: October 2016 starters

Well that's good to hear Belle - thank you so much for taking the time to reply 🙂 Did you find the side-effects more manageable with the EC?
Belle
Member

Re: October 2016 starters

Just popped over from June to wish all of you well as you start out.

Joeandthetribe - I had my last FEC changed to EC (should have had 6 x FEC) as my side effects were getting bad. My oncologist described 5FU as the 'mickey mouse' of the combo and increasingly it's not being used by units. His feeling was that in a few years it won't feature at all. I believe The Christie almost always use EC rather than FEC now so it shouldn't make any difference to your outcome at all.

That said, chemo is tailored to our individual requirements so for those of us who have had or are having 5FU (FEC rather than EC) then be reassured that our oncologists will have decided it is necessary in our cases.

Hope that helps,
B x
Joandthetribe
Member

Re: October 2016 starters

Thank you Sus12 🙂 i will be sure to pop in at some point to let you know how it went. Just like everything else on this horrid BC journey, the waiting for something to happen has got to be the worst bit. But yes, very strange to be 'looking forward' to poisoning myself!

MaryMinder, how utterly frustrating for you! My surgery results were delayed by a week which sent me into a bit of a spin imagining the worst (I am a champion worrier) but it turns out one of the pathologists had been on holiday and everyone's results were delayed. As everyone kept telling me 'no news is good news'! Fingers crossed everything comes good for Wednesday.

Right - I'm off to do my last minute prep before tomorrow. Keep well everyone x
assaritti45
Member

Re: October 2016 starters

we both start same day hugs xx

 

Sus12
Member

Re: October 2016 starters

I think you get to the point of wanting to get on with it despite all of us really wishing we didn't have to go through chemo, but as my friend who has been through all this and come out the other side with very positive outcomes said to me the other day when I was in serious panic mode, the chemo is giving us a big increased chance of the bc not coming back - so awful as it is it will be over and we can look forwards to carrying on with our lives!
Jo - all the very best for tomorrow. I'll be thinking of you. Big hugs,
Sue xx
maryminder
Member

Re: October 2016 starters

HI all,

CT results still not with oncologist so have to go back next Wednesday, no other reason to see him yesterday so why not phone and cancel the appointment, would have been better than sitting waiting all day.

 

I spoke to BCN who confirmed I need to go this Friday to the day unit for the Chemo Information talk and to arrange appointment dates so that's a step forward, will also be getting another 50ml in chest expander on Friday.

 

Just want to get on with it now, Hugs and Best Wishes Mary xx

 

 

Joandthetribe
Member

Re: October 2016 starters

Welcome to all new October joiners and good luck to anyone having/had chemo this week. Mine is on Friday and I am very nervous now!

Sus12 - I too was refused a massage because I had breast cancer. I hadn't even had surgery to my nodes at that point, but they said they had a policy of not massing the body of anyone who had BC. I just had to make do with a foot massage!

Maryminder - how did the CT results go? Praying for good results for you.

I had a call from my oncologist yesterday (which initially sent me into a bit of a spin - who gets a call from their oncologist??) But she just wanted to let me know that my chemo has changed from 4 x FEC to 4 X EC (will be missing off the F) not sure if this is a good or bad thing?
Sus12
Member

Re: October 2016 starters

Thinking of everyone especially those who have started their chemo this week. I have a date for the start of mine now..20th Oct. FEC - T Seems a long time to wait but I'm having my pre chemo assessment and PICC line put in before. Am getting married on Saturday though so I have some thing lovely to focus on which has helped take my mind off the impending chemoa bit! It's been a real roller coaster of emotions this last couple of months though as getting breast cancer wasn't in the wedding plans!
On a different note...I went for a relaxing pre wedding massage today with my daughter at a place where they know me and I go to quite regularly but the manager asked to have a quiet word with me and said they couldn't do massage on me due to the bc. I was a bit taken aback as as far as I've read there aren't any reasons why you can't have a massage if you have been diagnosed with cancer. I've been told by my lympodema nurse that it's fine to have, just to avoid massage on my left arm as I had the lymph nodes removed which is fine but other than that there is no problem having it. I explained this to them but they still wouldn't let me have it. Has anyone else been refused this? They were polite about it but said that they don't do any massage on people who have been diagnosed with cancer as their insurance company won't let them do it! I know that massage therapy is part of the breast cancer well being day tomorrow so I'll ask them about it too.
Sue x
Azara25
Member

Re: October 2016 starters

Hi everyone !  Thanks for sharing all your posts - it's so helpful to know there are other women out there going through the same thing. I too am starting chemo on Monday proposed drugs are AC x 4 (every 3 weeks) then T x12 weekly doses.  I'm 47 & was diagnosed with Grade 3 9mm triple negative tumour at end of July but when it was removed extensive DCIS was also found so I had to go back under for more surgery to remove that too. No spread was the only good news !  

I've gone from feeling extremely anxious about chemo to now being ok with the idea of it. I did have a terrible couple of days after having a flu jab though when the nodes above my collarbone swelled which logically I knew was probably not the cancer spreading but I still panicked until I was given the all clear & for info they went down about 5 days later in case anyone else has this problem (but still get them checked just don't worry too much). I think any ache / pain from now on will put me on high alert ! 

Does anyone know why an Oncologist chooses one drug combo above another as most people I know are having FEC T & I don't know why I'm having AC T ? 

Sending hugs to everyone on here xxx

rosie14
Member

Re: October 2016 starters

Good morning Anniedee so sorry that you have ended up here too! But the forum is the best place to turn to. Here you will find support understanding and empathy! So sorry to hear that so many of your close family seem to have also had to get on this journey!😬 You sound very positive keep on going lass!
The injections are to boost your white blood cells as they are effected by the chemo for BC. Without them your immune system would be very low! We are all different and experience different side effect and aches and pains in parts of the body are normal! That being said it is worth mentioning to you BC nurse if you are worried about the headaches and certainly if they persist!
Good luck!

maryminder
Member

Re: October 2016 starters

Hi all

CT results today at 4.45 all indications are positive but still can't completely silence the little niggling voice at the back of my mind so going to try and distract myself until then with some shopping and coffee with a friend, hopefully by the end of today should have a date for my picc line to be put in and for my first chemo session. Hugs Mary x

Anniedee
Member

Re: October 2016 starters

Good morning all, I'm another October newbie. This site has really helped me over the last few weeks, thank you to all...I feel I'm ready to post now ! 

 

I'm 49 and was diagnosed with triple negative BC in August and I'm on my first week of FEC-T chemo. I have had a lumpectomy where they managed to remove the 4cm tumor and luckily it has not spread to my lymph nodes ...thank goodness I caught it early. Unfortunately however I have been tested for the BRCA gene and I am BRCA2 positive which means that I am undergoing adjuvant chemotherapy. After chemo, I will then have surgery , having my ovaries removed and then a bilateral mastectomy...phew! So a long way to go...but I'm feeling very positive as the cancer was caught early by mammogram before it had even formed a lump.

My mother died of breast cancer at 52 and my sister earlier this year was diagnosed with ovarian cancer, hence the genetic testing. It's been a horrible and quite simply unbelievable 2016 (my father has also just finished chemo for prostate cancer ) but we are soldiering through together and have incredible support from friends and family.

 

I have a couple of questions..

- I have been given the g-sf injections to self inject daily for 7 days. Neither my sister or father were given these as part of their chemo treatment plans, is this specifically for FEC-T chemo ?

- I'm on day 8 of my first chemo and I've been very tired and had slight nausea but I'm taking each day as it comes. However I am getting headaches, a real tiredness headache at the front of my head. I'm taking paracetamol and taking my temperature beforehand ( which has been ok ) is this normal? I can't see headaches on the chemo book ..the paracetamol does help ..could this be a side effect of the injections ?

 

many thanks again to everyone posting ...it really does help and is a great comfort.

 

 

Knitwit_ni
Member

Re: October 2016 starters

Good luck to anyone starting chemo this week XXXX 

If all ok with my bloods tomorrow I should be getting my first dose of fec. Got picc line on Monday, so fingers crossed. Thanks for all advice from those who have already been there.

Not sure I'll sleep much, and got an early start! 

Sharz
Member

Re: October 2016 starters

Hi , I was diagnosed in June further tests found I had cancer in both breasts I have had a mastectomy on one side and lumpectomy on other, positive margins on lumpectomy so further surgery required. I have just recently found out I will be starting chemo on the 12th (fec-T) . I cannot have picc line as had lymph nodes removed on both sides so having a Hickman line put in. I have had lots of waiting around between appointments and feeling  a little scared of starting .

assaritti45
Member

Re: October 2016 starters

HI Ladies,

 

i now have a start date, i start the 3x Fec-t on the 12th and then followed by 3 tax so 6 sessions in total. i was told it will be with 2 to 3 weeks and yeah just about 2 weeks nctice befre start date.

 

sue thanks for the advice buts will have a read.

 

hugs 

 

lisa xxx

Sue H-S
Community Champion

Re: October 2016 starters

Hi assaritti45

so sorry to hear you are having such a struggle on top of your diagnosis. It just seems to be so unfair, especially at a time, where you need all of the support in the world. Do point out to your legal team, that you have this diagnosis, it may be of help, should the legal case, not be resolved as yet. I.e. you may have challenges around making court dates,etc.

I hope your chemo appointments will be in place, soon. I am wondering, whether it may be worth checking back with your treatment team with regards to your chemo regime. FEC-T usually means 3 x treatment with the drug combination of FEC and 3 x with the T, also known as docetaxol or Taxotere. So it may be worth checking whether it will be 3 x FEC and 6 x T?

Here is a link to some more information on the FEC-T treatment - https://www.breastcancercare.org.uk/information-support/publication/fec-t-chemotherapy-bcc233

When the time comes, so ask for a PICC line to be installed in the arm not affected with the node removal. I am sure you know by now that you have to be very careful with that arm. i.e. no injuries, injections, blood pressure taking - as to reduce the lymphoedema risk.

Your additional drug regime will be decided close to the start of your chemo and steroids and anti sickness medication will be part of that. Some may feel nauseous, but never actually get sick, others do get sick - it is very individual. Some suffer longer, some less so. The important thing is to let your treatment team know, should the drugs you have been given not work for you. They can be adjusted for the next time. Generally side effects are very individual - you may get hardly any or a few more. Most side effects can be made easier with an accompanying drug regime. 

Considering the removal of your nodes and the diagnosis of them, chemotherapy will be very important for you to ensure the best possible outcome for you. It is for many, far more doable, than initially expected - whilst for some it can be quite challenging.

Hoping you get your date soon.

Hugs

Sue xx

 

 

assaritti45
Member

Re: October 2016 starters

Hi Ladies,

 

just had a quick read, sorry not been back on but not been feeling too well, had so much to deal with non bc related. I was on court battling my ex over a non molestation order and then had oncology last week.

 

i now know i had 25 nodes removed and 6 were infected but they only class as 2 positive the others had a small amount and not countable. i have asked for bone scan just incase and other scans. i have my heart scan monday and was told i will be having 3 fec-t and 3 tax, not sure what the difference is. I have asked for extra antisickness as this is what i am dreading most of all and then losing my hair as well as all the other side effects.

 

i should be starting this month as i was told it will be within 2 to 3 weeks but still no date yet. i dont want chemo but know being tn i need to have it but wished i could now get a date as i just want to get it over with and the unknowing is horrible.

 

sue you look lovely without hair and with xx

 

sorry cant remember any more personals

 

love and hugs xxx

lisad
Member

Re: October 2016 starters

Thanks for the wig tip Sue - will do this over the weekend xx

 

Sue H-S
Community Champion

Re: October 2016 starters

Hi Sue

 

Thank you for all of your compliments - they really are appreciated. I. like you, was very apprehensive, too.

I wore my wig out - over my then existing hair - to see whether anyone noticed and to gain some confidence. And no one noticed - such a confidence booster! 

I never wore it indoors - wore scarves mostly - not purchased, but the ones I had already in my warderobe.

And when it finally got really warm - the wig became too warm and I gained the confidence to go without.

Again - no one looked at me strangely, no one commented, which gave me the confidence to make a statement of it, rather than hide.

Tip for new wig owners! - Before you start wearing it - give it a wash with the special wig shampoo! You'll find it will soften the hair and the whole wig.

Hugs

Sue xx 

Sus12
Member

Re: October 2016 starters

I can't bear to get my hair cut although I know it won't be easy when it starts to fall out. Wig trial tomorrow. Am going with an open mind. Have bought a couple of hats and tried on once but then they went in the drawer. Gradually coming to terms with the fact I'm going to lose my hair but it's still tough to deal with and I know I'll be upset when I do. It feels so vain to be worrying about that when I've really got bigger things to deal with but I'm not the most self confident person either! 😞 . It's good to hear positive stuff about it though and it helps a lot and it's lovely that you could share your pics Sue H. Makes me feel more like come on you can deal with this.
Hugs to all for this week, whatever individually we are dealing with. Sue xx
lisad
Member

Re: October 2016 starters

Thanks for sharing Sue - you look fab in all the photos.Heart

My hair has come out in bucket loads today, so from tomorrow will have to start wearing headcovers. Trying to get the hang of scraves and getting in a tangle.Woman LOL

Khajista
Member

Re: October 2016 starters

Sue i was terrified with the upcoming hair loss, you have been a great inspiration to me. You look beautiful xoxo

lisad
Member

Re: October 2016 starters

I am having this fitted this afternoon. It means that you can continue to bath and shower etc without any issue of getting it wet.

 

http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemoth...


I have very shallow veins and my first chemo session I ended up with my arm in a bucket of hot water to bring the veins up in order to have my chemo.Woman Very Happy

Sus12
Member

Re: October 2016 starters

Re creative makeup. Me neither Sarah! Once my daughter got me to try false eye lashes and half way through the eve I noticed something out of the corner of my eye....hasty retreat to the ladies! :D. Never tried anything like that since! Luckily there's a health and well being day on Thursday this week near me so I might get some advice. I need it!! If I find anything that might be useful to everyone I'll pass it on on this post. Also my wig experience on Tuesday :).
My oncologist said he's giving me the bone marrow injection to help my white blood cells. Does seem as if that varies from area to area/oncologist etc whether they give it or not as a colleague of a friend hasn't been offered it. My own doctor picked up on me having the flu jab a couple of weeks ago and said I must have it before I start my chemo and he got me in the next day for it. My other half has asked to have one too in case he gets flu. I don't know if once I've had the flu jab it matters but he's being given it.
Thanks bluash for the info on the PICC cover. I'll ask the chemo nurse about getting one from them but I've found the one you mentioned online. It does seem from reading stuff that a PICC line is def the way to go though.
Sue xx
Sue H-S
Community Champion

Re: October 2016 starters

Hi Sarah04

thank you so much for the compliments - sooooo appreciated, considering how old I really am.

And a bit of make-up works miracles - you should see me without it - especially just post chemo treatment!!!

Not a good look, lol.

I evenutally gave up on wearing my wig, when the hair was gone - it was just too hot in the summer.

Nice make up - dangly earings - and no one batted an eye lid! It certainly made my life easier. Mind you - now where the colder weather becons - it does get a bit cold 'up top', lol. So have to think of  something until the hair is thick and long enough to keep my head warm. 

Good luck to all new starters next week. I hope all goes well and that you all have very few side effects. If you have - just post - sharing is likely to help others. And perhaps there are some tips to be had to deal with things. It does help tp know whether a side effect is normal or not - or when to do something about it.

Hugs

Sue xx

 

Sarah04
Member

Re: October 2016 starters

Hi Lee

Good luck with everything tomorrow. I'm 39 with a 6 year old so similar age to yours. I've just had 2 out of 6 EC. So far for me, first 6 days are the worst, but manageable. They changed my meds after first session as I was quite sick. Don't be afraid to request this as there is no need to suffer in silence.
Sue. As the other Sue said, a Picc line is the way forward! I had mine put in prior to first treatment as my veins are really small. I'm so pleased I've got it. You soon forget it's there and it makes things so much easier.
Sue, you rock the short hair! You look really young and really well.
I've booked in to Look Good, Feel Better a week tomorrow which I'm looking forward too as make up is not my forte. The creative gene has passed me by I'm afraid so eyebrows, make up etc will not look anywhere near as good as yours.
Good luck everyone x
Vintage
Member

Re: October 2016 starters

Hi Lee
I to suffered bad hyperemisis with both my pregnancies. So I know what you mean. Am 46 and have had 2 of 6 fec-TH.
On my first cycle I was given Emend , ondansetron and cyclozine to take home. I was admitted later that evening for iv ondansetron and fluids as I was quite sick. They managed to settle the nausea very quickly so I was glad I went into hospital for afew days and had my own room cause on chemo. Second chemo they changed my meds a bit. I had a syringe driver for first few days at home. A nurse came once a day to top it up with levomepromazine. Plus still taking the other tablets. I was much better and by end of week , nausea was away.😆
I have chemo 3 tomorrow. Good luck this week. I will look out to see how you are.
There are lots of drugs they can give now to control the nausea so make sure you tell them sooner than later.
I found the hyperemisis much much worse 😅 apart from the losing my hair part.
Take care
Hugs Vx
blueash
Community Champion

Re: October 2016 starters

I have had a PICC line from the beginning and I think it is wonderful! They put it in a couple of inches above your elbow using a local anaesthetic so you don't feel a thing. Then they send you for an xray to make sure it is in the right place.

 

I got a waterproof cover called a Limbo on prescription so free. I had to buy my other covers but I got them from Live better with cancer. If you don't get a cover you have to have the stockingette which the hospital supply - which is alright but I prefer my own covers.

 

Probably far too late now but I had my eyebrows tattooed on before chemo but could only manage the one session and had to forgo the top up they like to give 3 or 4 weeks later. They still look OK though.

Flopsy
Member

Re: October 2016 starters

The injections were a bit of surprise to me when I did my chemo (FEC-T). The Oncology nurse gave them to me out of the blue when I was on the FEC part. It could be because I had an infection on my first cycle. Policy on giving GCSF injections seems to vary.

 

You may be given the injections to do at home after one of your chemo cycles. I did them myself (as used to self inject)  but some people get husbands or friends to do them or the local district nurse.

 

Chemo can deplete white blood cells and the injections are to build them up again. 

 

Bone pain is one of the possible side effects. 

 

When I had bone pain I tried Ibuprofen but it didn't work for me. Did some research and came onto the histamine connection. This may be particuarly useful if you are normally allergic?   I've had allergic reactions before so tried Claritine (antihistamine) and Benadryl. This worked for me in controlling the pain finally.

 

Here's some more information if anyone is interested

 

http://www.breastcancer.org/treatment/druglist/neulasta

 

Sus12
Member

Re: October 2016 starters

Hi Sue,

You look beautiful without hair! Love the wig though. Thanks for sending the pics it gives me a lot more confidence to know they can look good!
I was trying to explain to my hubby to be (getting married on the 8th Oct in the middle of all this! We decided not to put it off ) how although men must find it hard losing their hair for us women I think it's harder. It's such a part of us and our identity but things change and I know it will grow back eventually. My girls have said they're going to buy me lots of nice long earrings so I don't miss having something hanging near my face :D.
Thanks for the info re PICC line. It sounds a bit worrying when they tell you you're having that put in as well as everything else! I'll have to have it in my right arm as they can't put it in my left die to thelymph node removal. I've got the start of lymphodema in my left arm and getting a special bandage thing from the lymphodema nurse so I might have both arms covered with various things 😄
Just been helping out at the Asdas Tickled Pink campaign this weekend for Breast Cancer Care and Breast Cancer Now. What a lovely lovely bunch of ladies I met up with!
Sue xx
Sue H-S
Community Champion

Re: October 2016 starters

Hi Sue......from another Sue

I so understand how you feel about not being able to be part of those childrens life for the moment - fingers crossed, that you shall have the same opportunity again next year, when your active treatment is completed and you have recovered.

PICC line - this will be put - usually - in your upper arm on the side, which has not had a sentinel node biopsy or further nodes removed. It stays in throughout the chemo treatment and usually for about 4-6 weeks afterwards. It is a godsent - I started without, but due to my veins burning out - had one for chemo 5 and 6 - so brilliant, as bloods are taken that way, too. No more need for cannulation! so very useful, too - should something unforseen happen.

It should be 'flushed' one a week. In my case the district nurses did this - and they also took the bloods, when they were due pre chemo treatment. It really did not bother me at all.

It also must not get wet - so shower and bath may present more than a challenge than usual. You may wish to look out for a waterproof PICC cover. Now with winter on the doorstep, you can hide it easily under long sleeves, as long as they are not too tight - otherwise - I hid mine under a fashionable scarf tied around it in the summer. People thought it was a fashion statement, lol.

As you have shoulder length hair (mine was a little longer still) - I would recommend to get it cut as short as possible pre chemo, especially if you are not cold capping. When the follicles go to sleep - one may experience itching/tingling and/or a sore scalp and headaches. Although we think a hair does not weigh a lot - it does to a follicle. Cutting as short as possible , or even shaving- can minimise those symptoms. Shaving or clipping is no longer an option, when chemo has commenced, due to the compromised immune system. 

It may also be an idea to get a 'sleep cap', which is available at many cnacer headgear specialists. it'll catch the hair you have lost during the night. It can be distressing to some to have to collect all of the lost hair out of the bed and pillow in the mornings.

It is surprising, how many posts I have read by now of women, who love their long hair and identify it as being a key part of who they are - have taken to a clippered style quite easily. Some of them actually found it liberating. Surprising, but true. Some of us, of course, can get away with a clippered cut better than others. A certain amount of make-up also becomes more important to highlight our good facial features - such as eyes, cheeks and lips.

Just to give you an idea - how looks change - before chemo -  from - to - 

IMG_1710 smaller.jpg14-05_1514_5_3.jpg

and with wig

21_6_16 2.jpg

Hugs

Sue xx

Sus12
Member

Re: October 2016 starters

It must be hard to explain if you've got young children. My two lovely girls are in their mid to late twenties but I've still had to be quite careful as to how much information to give them and when but gradually after being very shocked and upset they are handling it better now. One of the hardest things for me is that I've had to stop teaching as my breast surgeon and doctor said that's one job he wouldn't let me do due to the high risk of infection. I was devastated as I love my job. I used to reach in a special school for children with severe learning and physical disabilities. As I have recently moved I had a chance to start a new one this Sep but had to withdraw when I found out I had bc as I couldn't start with the newbies in Nursery/Reception and couldn't say when I would be able to start. It was hard seeing them all going back in September.
I haven't had a meeting re my pre chemo meeting yet but I guess they'll do it in the next week. I do know I'm having a PICC line in. Anyone had one? I don't really know what to expect with that if it's in all the time.
Having a wig appointment on Tuesday. Don't know how I feel about it but I think I will feel better being out at things with hair sometimes when it's people I don't know as it's easier not to have to keep explaining why I have no hair! Thinking I should get something to help keep my hair off my pillow when it starts to fall out too as I have shoulder length hair.....at the moment! 😄
Sue xx
Lammy73
Member

Re: October 2016 starters

Thank you Blueash!  Thankfully my husband and I both work from home, and so staying away from people should be fairly straightforward, it's just the children that have both just started new schools so they are whole new sets of bugs for them to get immune to as well 🙂

 

I've got my info session tomorrow, and I'm writing a really long list - I like being organised, and this whole process has been difficult for me as you can't really plan anything, as the diagnosis and then the treatment is a step by step, see how we go process.  My breast cancer nurses are absolutely brilliant, so I have a lotof support from them and the people I have met in the chemotherapy unit seem really nice, so although i'm not looking forward to it I feel like I'm in good hands. 

 

 

xx

Sue H-S
Community Champion

youRe: October 2016 starters

Hi Khajista,

should you experience bone pain, usually standard over the counter painkillers, such as paracetomol, can be of much help.

Which country are you being treated in?

Hugs

Sue xx

blueash
Community Champion

Re: October 2016 starters

Hello Lee, When you get your chemo chat you might be there a while! I was in and out because they start of with "do you have a job?" if so they tell you all about your rights including the right to be moved away from meeting the public (germs/infection risk).

 

Then they move on to "any children in the house?" and proceed to tell you about that, whether thy can have friends round, what to do at the school gates ( you ought not to mix with lots of kids).

 

If you have children the chances are you have a pet. No cleaning the cat litter box or bird cage for you.

 

At mine the nurse laughed and said "this will be quick" because I don't work, no children that live with me (grown up and moved away) and I don't have any pets. My chat was about avoiding public transport and letting someone else go shopping.

 

The biggest advantage I have though is being able to be lazy when I want to be. With a little one that might be harder for you so please arrange for someone else to be around from about the 2nd day after your treatment for a few days. I have a granddaughter that I only let see me in my good week because I am afraid of how it may effect her. She knows that I need strong medicine to make me better and that I need lots of rest. She even asked if I was going to die! I said "not yet" and she was happy with that.

 

You will cope because lots of women have to cope with children and chemo but I wanted you to be aware.

 

 

Lammy73
Member

Re: October 2016 starters

Good morning everyone 🙂  My name is Lee, I'm 43 and was diagnosed in August.  I had a lumpectomy at the beginning of September and intially was told that chemo would not be required, only radiotherapy and hormone therapy.  However, when they opened me up there was a second tumour that they did not pick up on the scans, and the lab report regraded me from slow to intermediate growth, so due to my age and that, I'm starting 6 cycles of chemo this week.

 

I have to say, I am a bit apprehensive.  I have two children (11 years and 4 years) two beautiful girls and I'm finding myself focussed more on making it easy for them, but then at 2am in the morning waking up and it hits me.  I am very positive about the treatment, and so very grateful they caught it early enough to treat, but as I wasnt expecting to have chemotherapy as well its taking a while for me to get my head around it!

 

I'm a little anxious of the side effects, but as I experienced hyperemsis on both pregnancies, I think that was practice for getting me through this!  

 

I'm really looking forward to talking with everyone and being able to support each other 🙂

 

 

#fightlikeagirl

 

 

Lee xx

 

Kaz58
Member

Re: October 2016 starters

Thanks maryminder, hug gratefully received. The 'proverbial swan' has summed up perfectly how I feel too.

Hope you get a date sorted soon. xx

Khajista
Member

Re: October 2016 starters

I am much grateful for all your support and advise on my concern. I am starting the treatment in less than 24 hour and super nervous :(. This forum and people here are so supportive i feel so blessed.
Khajista
Member

Re: October 2016 starters

Your response is of great help to me~~I am not suggested anything as yet for bone pain, i am not sure if il be able to bear it or not. I shall keep on posting here for help, unfortunately cold caps are not available in my country.
maryminder
Member

Re: October 2016 starters

Hi Karen, I will be on the starting on the same regime as you in the next couple of weeks, just have to wait for my CT results which should be when I see my Oncologist on Wednesday then we can sort a date to start.

 

Like you i have had my flu jab, seen my dentist and I have ordered some hats and scarves, have an appointment on Tuesday to look at wigs my sister will be coming with me.I am trying to be as organised as possible but feel like the proverbial swan all calm on the surface and paddling like crazy underneath.

 

It's scary and although surrounded by family and friends you can feel so alone sometimes, that's why this place is so good everyone knows how you feel and if you want to rant and say things stink you can, as you say it is good to share experiences good and bad.

 

Good luck for Thursday, hugs xx

Kaz58
Member

Re: October 2016 starters

Hi lovely ladies. My name is Karen, aged 58 and was diagnosed in July.. I have had a masectomy with immediate implant reconstructin which I have recovered from well.  I am starting my chemo on 6 th October and have tried to be calm about it but now it's getting nearer I can feel the panic setting in,! I am having 3 X EC and 3 X T followed by some radiotherapy . I am so glad I checked onto this thread. So many with similar situations and so much advice. Good too that people share all their experiences, good and bad. 

I was advised to get the flu jab before starting if possible so I had this 10 days ago and have sorted myself a wig (with the help of a good friend to give me an honest opinion) .  I decided I needed to do this now as not sure I would have been able to do this if I was not in a good place once treatment started.

i have made myself a list , as suggested, of supplies I may need in the coming weeks. My main fear now is that having geared myself up for Thursday , for some reason they don't go ahead with the treatment . I need to get going now and move forward with this whilst I am still just about holding it together!

Wishing everyone starting on this journey, or already on it, the very best and sending positive thoughts and hugs. Xxx

Sus12
Member

Re: October 2016 starters

Hello all.
Another one for the October group! Up to now I've had routine mammogram then got sent for recall. Told repeatedly how lucky I was they had caught it early then after biopsies then more biopsies they said it had spead to just over half of my lymph nodes. The first was a shock, the second bit which was weeks later a bigger shock weirdly. Went into tearful meltdown occasionally but then had to focus on having a WLE and full lymph node removal. I know I'm lucky though to not have had to have a mastectomy. 7 weeks on and I've just seen my oncologist and starting chemo in about 1 and a half to 2 weeks. They can't be exact as apparently there's a waiting list!! I'm having FEC-T but don't quite understand about it all yet.....anyone else on this or about to start? I've had a few tearful moments about losing my hair but am trying everything going - hats, scarves, wigs, including cold cap if I can stand it! I'm so glad there is a forum like this. Unfortunately I've had to rely heavily on Breast Cancer Care support as I've had a not at all good breast care nurse so I've been very grateful for the advice and support from BCC. I don't know what I would have done without them. This is probably the most challenging thing we will all ever go through but as someone said it's doable and we are stronger than we think sometimes. Since being diagnosed I've had to learn that allowing myself to have a cry sometimes and to allow people to help and support me is a good thing not a bad one! Lots of hugs to all of you. Sue xx