Hi Leanne your treatment plan sounds similar to mine although I'm scheduled to have right breast removed with the option of reconstructive surgery in 12 months time! I gad 6 cycles of chemo each session lasted for up to 5 hours 4 different types of drugs. I suffered terribly with fatigue and nauseousness which was debilitating, however after my mid way review with my Oncologist Consultant she said I shouldn't be feeling that bad and they offered me alternative medication. The side effects eased slightly best thing is too eat little as you need food to fuel your body the worst thing I felt was not eating as this left be feeling weak. The last cycle was the best I recovered quickly and the side effects were minimum and over quickly this is becsuse some of the chemo drugs were reduced made a difference. Unfortunately I had 3 blood transfusions which nobody warned me about, and magnesium and potassium infusions. I bought a wig from a specialist wig maker in Birmingham I live in Manchester I don't even wear it I prefer scarves or to wear nothing at all. It's amazing how confident I feel going out without covering my hair. I hope this helps good luck with your chemo x

Leanne,

Firstly please don't waste money getting something you may not need, its really easy to do and I had planned for the 'normal' side effects of chemo and like you had bought lots of stuff and didn't get half of the expected side effects, as a tight northerner this was very annoying.

Anyway, in terms of me, as you asked, and do bear in mind that I had very manageable side effects (rough week after chemo and a few hospital visits but no sickness/nausea and was able to ride bike & go to gym throughout), I would recommend the following

- tasty cordial or soft drinks as chances are you taste buds will change ( I love water & green tea and both tasted decidedly odd).

- frozen grapes & pineapple chunks as you may get sore mouth ( I didn't but these were yummy and if the sun comes back will be good in summer regardless)

- my skin was a lot drier so you may need to consider changing moisturiser, I would recommend something natural/organic with no nasty chemicals in it to be kind to your skin.  I use the website theremustbeabetterway.co.uk who have a wide selection and I've always found to be reliable.

- most useful of all was a diary so I could record how I was physically and knew when to expect rough & good days (you'll get into a cycle of what to expect) and also determine if side effects that I may have thought would disappear did (they usually didn't!)

-paracetamol- useful for side effects, managing temperature and cold cap and probably more

- have a good chat with nurses and others as you'll meet some lovely people if you do so

- take advantage of things offered by MacMillan/Maggies etc. Though cv may have disrupted these I was able to have some reflexology/massage & reiki.

- be prepared to eat stronger flavoured food, I found curries were one of the few things that didn't taste bland and took full advantage of visit to local curry house whenever I could.

- again not sure in these times but get pals to accompany you (this may no longer be permitted of course) as it will make things much more fun.

- don't be afraid to call your support line (mine was a McMillan hotline that acted as triage for any chemo related issues) as better to be safe than sorry.

- can't help with wig as went grade 1 and loved it but get the child angle totally.  

- a silk pillow was really nice for sleeping on with no hair as was wearing a very light chemo cap

-join (if you haven't already) MacMillan and breastcancernow forums as they have monthly chemo discussion threads where you can make pals, moan, share experiences and get advice from those who are going through/have gone through chemo. MacMillan monthly thread has a link to chemo top tips that would be good for you to have a look at given your query.

- breastcancernow also offers a "someone like me" service where you can chat with someone that's gone through what you will be which may be useful?

- other musts for me were false eyelashes (trimmed so as not to impersonate a drag queen) and eyebrow pencil.

You can see more about my cancer stuff on bio.  Really glad you're positive about the treatment (as I was and am!), it will really benefit you ALOT!

Good luck with your treatment.

Sam

Hi Leanne,

I'm in a similar position to you - I had my first round of chemotherapy almost 2 weeks ago (my treatment plan is 6 months of chemo followed by surgery and maybe radiotherapy).

Side effects are slowly easing now. I can't recommend anything in particular; the past 2 weeks have been awful to be completely honest (probably not what you want to hear, sorry). I did buy some nice comfy lounge wear for days when I feel really down, and it's worked a bit :) 

I've also found it helpful to have lots of ice in the freeze - I really struggled to drink anything for the first week and tiny sips of ice cold water was just about all I could handle. It had to be ice, ice cold!

I have two young children (3 and 1) as well. I have everything crossed for you. If you find anything that helps you, let me know. X 

Hi Lupita, 

Thanks so much for your message - it's really reassuring that you feel confident without your hair. I'm struggling to find any wig places open near me and don't really want to guess via the internet! I've been practicing with headscarves the last couple of days and I'm getting the hang of them, my girls are getting used to them too so maybe I will wear my baldness with pride afterall! 

Thanks also for letting me know about the side effects you had, I know we are all different but mentally it helps to prepare for all eventualities. I'm having four drugs in the cycles too: taxotere, claboparin, herceptin and pertuzimab (not sure I spelled ANY correctly!) I'll do the first two for 6 cycles and continue with the herceptin and pertuzimab for a year.

Hopefully you're feeling stronger now that you've had your last cycle.

I think my bi lateral mastectomy will come sooner rather than later as I also have DCIS scattered like shrapnel in my left breast (right one is invasive and the one that's responsible for my having chemo) though I don't think the reconstruction will be on the table for a while due to covid.

How are you doing now that chemo is over?

Hi Sarah, 

Thanks so much for your reply. Sounds like a rough couple of weeks for you so I appreciate you giving me the heads up. Hopefully you're feeling about better as this week has gone on.

Love your tip for ice, I have none in, so I'm filling up ice cube trays I prep :happy:

any tips on what to wear for chemo days? Did you get cold/hot? I'm such a freezer normally, I'm wondering whether I should turn up with a blanket and fluffy socks :wink:

it must be difficult having such young children around. My two are a little bit older so I'm hoping that whilst it could be distressing for them, they also be able to understand when I need some space. Such a minefield isn't it!

well, thanks again for your advice. I'll let you know if I find anything useful as I progress ont his journey,

leanne

x

Hi sunshine,

Thanks for your reply, it will definitely be good to compare notes though I'm sorry to hear you are going through this too.

I have long hair too, well actually not anymore, my 9 year old cut it into a bob at the weekend. I'm trying to make this as positive an experience for them as possible so letting her cut my hair was the first bit of fun... She did a great job! My 7 year old after a few hours of tears came round to it all and wants to be the one that does the shave... Excited about painting me yellow and turning me into her minion:laugh:.

I'm also HER2 and ER positive so I'll be having the chemo for 6 cycles,  along with herceptin and pertuzimab will- they continue on for a year. 

i hope the first cycle goes ok for you, keep me posted on how you get on,

leanne

x

Ahhhh Sam,

Thank you so much for your reply, you made me smile so much and your tips I'm sure will be invaluable. I now have a silk pillowcase on order and frozen pineapple chunks in the freezer :happy:

love that you rocked the shave. If I can get my kids not to freak out, i hope I will have that same confidence.  My 9 year old cut my hair from very long to a bob on Saturday so we are starting the process, I've also started wearing headscarves the last couple of days to get them used to it (trying to go tribal turban/warrior look, but looking more like Nora batty! More practice needed).

need advice for eyelashes, if you have any tips send them my way! I usually glue false eyelashes onto my own lashes so my technique is going to need perfecting. Don't suppose you've tried magnetic eyeliner lashes??

I noticed you're a northern defector? Me too, left Middlesbrough for South Wales, what about you?

Thanks again for all your tips, really appreciate you taking the time to write them all down :happy:

leanne

x

​​​​​​

Leanne,
Crikey, wish I had a 9 yr old to cut my hair, I did have a go at removing some of the (new, post chemo) curls the other day, not quite sure how that turned out as can't be bothered to mambo with 2 mirrors to have a look!  My hair is currently the look of an overgrown, grey Pat Butcher with the texture of a border terrier...its, umm interesting.  The boyfriend made such a mess of it when he shaved it during chemo (had to go to the barber the following day for remedial action) he's now too scared to do it!

The 'normal' false eyelashes will do until you lose your own eyelashes, didn't try any magnetic ones but did find c-lash (available at Boots) to be just fine for my needs until the real ones started growing back.  I never really bothered about perfecting the technique (call me slap-dash Sam) but had much fun giving myself marks out of 10 (don't think I ever got above an 8 but am quite a harsh marker!).  More proud that I never lost any or had any cheek caterpillars.

Defection took me from Leeds/York area to Surrey...but I do plan to return to the Motherland at some point, so much cheaper never mind anything else.  Wales is lovely however, my plan B if not Yorkshire is Northumberland, the boyfriend is a scouser however so may end up being more Mancs land...as long as its north we're good!

Glad your kids are getting more on board, that's one less thing to worry about eh.

Sam X