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March 2021 Chemo Starters

Titch53
Member

Re: March 2021 Chemo Starters

Just popping on here quickly- I also had that Balls to Cancer care kit Julie-its really good-they also do free holidays in a luxury caravan! It’s near Weston-super-Mare on a Haven caravan park. I’ve booked it for 5 days in August in the gap between finishing chemo and starting radiotherapy for me and the family, you just have to send proof you have cancer! It’s on their website if anyone fancies it!

Enjoy your Sunday everyone!!

Elaine xx 

Jewels
Member

March 2021 Chemo Starters

 

Hello all

Just a quick update on the wigs, they all arrived on Friday and I tried them all on and said oh yes to the first one, then when we looked back at the photos we took we realised that the first one was the worst as it had too much hair.  The day before the wig arrived I got my hair cut very short so the other 2 felt like they were too long so I opted for the short one.  I video called my Mum and she said oh your hair looks really good today, did you wash it…. Lol…  I am in England.  The hospital pay for part and I had to pay the remainder, they are expensive.  The cost depends on which one you choose, I had to pay £78 plus a wig care kit at £27.  The bandanas also arrived from @annabandanna, they were good too.  Luckily my Daughter was here when they arrived so we did have a giggle trying them on, I think I would’ve been in tears if I was on my own.

A friend also dropped me around a chemo bag with bits and piece in it that you can apply for from @ballstocancer web site (think that may just apply to the UK).   They do cater for ladies, I got a badge in it that says #BTCHer, which I thought very appropriate as I’m getting the treatment as I’m HER2+ and I’m obviously a girly… It was a pretty fun day yesterday, I feel prepared now.  He also said that we should get free prescriptions for 5 years now that we have had cancer, I wasn’t aware of that so I’m going to talk to my Macmillan nurse on Monday.

Your tips and advice are so useful, I had not thought about taking lunch but it’s now a question I will ask the nurse when she calls before I start my treatment.

Lindsay we start treatment the same day, I just have to go in for a few hours as my treatment is just 3 drugs the FEC ones.

Angela, I’m so pleased your treatment went OK after the initial anxiety.

Elaine I’m also having chemo post-surgery to flush out any leftover cells.  I’m so pleased to hear that the symptoms have not been as bad as expected, I think our brains are training us to expect the worst. I’ll also get some heartburn tablets in ready, great tip, thank you.

Keep smiling ladies

Julie x

 
 
Titch53
Member

Re: March 2021 Chemo Starters

Hi everyone 

Hope you’re feeling okay after your first session Angela! It feels good to mark one off the calendar doesn’t it! I hadn’t taken anything in with me but ended up chatting to others having chemo anyway so the time passed quickly.

Mine was about 3 hours in total -is there a specific reason yours is going to take 8 hours Lindsey? I guess it depends what they’re giving you doesn’t it-I had a friend whose sessions took 6 hours. In that case you’ll definitely need entertainment with you!! Hope it goes well!

I’m now 10 days post-chemo and am feeling more like my old self, hair has gone v dry! 
Keep well everyone!! Xx

 

angela8
Member

Re: March 2021 Chemo Starters

Thanks Lindsay - glad to have one down!

I took some lunch with me but in the end I didn't need to, as they came round with a trolley with sandwiches and fruit at lunchtime, and then tea and biscuits a bit later.

Great idea to bring an iPad for some easy TV. I had also spent some time downloading programmes but as it turned out the hospital had good wifi, so that might save you a job!

I arrived for my pre-assessment at 10:30 (one of the nurses confirmed the treatment and discussed side-effects etc, and answered any questions I had), and then it was probably about an hour before I was taken into the ward to start treatment. I was out just after 3:30 what with the cool cap and an injection I needed after chemo - not sure how that compares to others.

Angela x

 

Linds7oaks
Member

Re: March 2021 Chemo Starters

Hi Angela 

Well done! First treatment done!

It sounds like it went well, that’s brilliant! I can so imagine what you mean about a long haul flight and not settling on anything. I am planning on downloading loads of easy TV onto my iPad. Did you take lunch in? My first session is going to take 8 hours, I don’t know if that’s normal.

Lx

angela8
Member

Re: March 2021 Chemo Starters

Hi all,

Hope you are all doing well.

I had my first treatment yesterday and was feeling a little teary when I arrived at the hospital, but fortunately found the day itself quite straightforward.

I did go with the cold cap as planned, and didn’t find it to be as bad as I was expecting. I took a couple of painkillers beforehand which may have helped. One other tip I had read was to bring some conditioner to apply to the hair before using the cold cap, so brought some with me for that. It does sound like people have varying experiences - another lady on the ward said that she gave up on it after 5 minutes, but the lady next to me and I both found it a little uncomfortable for the first 10 minutes or so and then found it OK after that.

Going through the treatment itself was OK for me - it did feel a little like being on a long haul flight and couldn’t manage to distract myself with anything I had brought with me! But physically I felt OK afterwards, and managed to go for a walk in the evening. I’ve been feeling fine, if a bit tired, and have had some very mild nausea that the anti-sickness tablets seem to have been quite effective in treating. @Titch53 - it’s reassuring to hear your experience so far has been similar too - not as bad as you were expecting.

I’m going to try and keep as active as possible and go for daily walks while I’m still feeling generally OK in case the side effects take a turn.

@Jewels- look forward to hearing how you get on the wigs, that is the one thing I haven’t thought too much about so far!

@Linds7oaks - so glad to hear that you have a date for your first treatment!

Angela x

Linds7oaks
Member

Re: March 2021 Chemo Starters

Good morning 

Welcome to the thread Elaine! That’s really good that you’re feeling better than expected with the chemo. Although it sounds like it’s been a tough process so far.

Julie, your wig process sounds great, although I totally understand many reasons why you got upset. It’s suddenly real and hard to process that you actually need to wear a wig. Do you live in England? And is it free?

 I have my date confirmed for the first treatment: Tuesday 30th March (and 31st). 😁😁 The CT scan has revealed a cyst on my liver so I need an ultrasound but my oncologist said they’re very common so she wasn’t concerned.

 Thanks for the Ticking off breast cancer website tip. It’s brilliant and so useful. I am going to get together my chemo bag and have also ordered a couple of books they recommend. 

Best wishes to you all, Lindsay x

Titch53
Member

Re: March 2021 Chemo Starters

Hi everyone 

I’m new to this thread! Started my chemo March 10th and am on EC for 3 sessions then Docataxel for 3. Was diagnosed Nov 23rd (funny how the exact date sticks in the brain!) with HER2+ ER+ and had lumpectomy which didn’t do the trick so then mastectomy with stage 2 clearance which did so my chemo is to flush any leftover cancerous cells out!

I must say I’m now 8 days post-chemo and it’s not been as bad as I thought. I would recommend asking for heartburn tablets to take home as I don’t normally suffer with it but that was the worst thing on my 1st night! Rang the unit the next day and they gave me tablets and that’s been fine since! 
It’s lovely to join a group with others going through similar experiences! 
Elaine xx

Jewels
Member

Re: March 2021 Chemo Starters

 
Hello all
 

Yesterday I rang my BC Nurse to ask for the wig makers details, I rang her and she said to send me some generic pictures of what style I wanted my wig to look like.  The process upset me a fair bit which surprised me as I am looking forward to getting my hair cut short but I guess the wig is a whole different set of mind games.  The lady was fab, she sent me a few pictures of wigs she would order for me, she said that they would be sent straight to my house for me to chose 1 of the 4 she had sent, I then return the ones that I do not want.  Seemed a pretty simply process in the end.  Will let you know how it goes when they arrive.

I am getting my hair cut short tomorrow in preparation for treatment, it's pretty long at the moment so I will be relieved to get it chopped short.  Am planning on fairly short pixie cut, have got my thoughts around that one by just thinking, it's only a hair cut.

How are you feeling Angela?

Any news for you Lindsay?

Speak soon lovely ladies

Do any of you have issues posting a reply, as it will not take it most of the time, I’ve learnt to copy and paste it before I try post it.

Julie x

Evie-S
Community Champion

Re: March 2021 Chemo Starters

Hi to all March 21 starters and big hugs to you all - I just wanted to jump in and offer my experience and what I was told by my team about nail varnish when I was going through chemo. My team were adamant that chemo patients should not use dark nail varnish because that would mean that they aren’t able to see any issues that might arise with the nails. They did say that I could use clear varnish if I wanted. My team does seem to be in the minority as I have read so many threads about people using dark nail varnish, but for those thinking about using it you might want to check with your team to see if they have a view on it.

Very best wishes, Evie xx 💕

Shi
Community Champion
Community Champion

Re: March 2021 Chemo Starters

The dark nail varnish helps protect nails against uv light docetaxol can take nails, did loose couple of toe nails but kept fingernails ok 👍 for wigs not sure what’s happening for your treatments with the Covid-19 but you should get a wig voucher from your units, also your Macmillan’s in hospital have pre-loved wigs for a donation, again don’t know what’s happening because of Covid. Luvyababes has great range (not just dressing up ones) don’t know when the look good feel better sessions at your trusts will run, but worth you asking about them too. Do get your make up on when you shave hair (I ended up looking like action man) rather than sinead O’Connor because I didn’t put make up on, just a tip that might help too❤️ That’s great little princes are taking hair again ❤️ Found it helped when loosing rapunzel locks because it was going to help a child who needed a wig and gave control of what happened to hair ❤️ Step by step you beautiful amazing March 2021 gang will care and support each other through, do always check with your teams, ring the number on here and speak to a nurse and don’t ever feel like you are making a fuss, everyone wants you safely through, do it your own way in your own time ❤️ 💕💕Shi xx

Linds7oaks
Member

Re: March 2021 Chemo Starters

Hi

Welcome to the group Kiti, all the way from America! That’s the treatment I am going to have so it’s good to hear you’re tolerating it ok, or better than expected anyway. 

Thanks for the website tips Angela. It’s so brilliant getting tips and ideas from everyone here. I have also now ordered dark nail varnish although I went for navy, I hope that’s ok. Is it ok to remove and reapply it as normal?

Has anyone thought about wigs yet? Do we get one free from the NHS in England? I have ordered a scarf and beanie hat from a wonderful website https://www.chemoheadwear.co.uk

Claire will do a free zoom consultation and is really lovely and helpful. I am actually excited to receive them and I will take any positive I can right now! 

 I didn’t hear today about my chemo date but I did get a call from my oncologist’s office to make an appointment for tomorrow which I wasn’t expecting so I am worried now as I have had a CT scan and echo cardiogram in the last week. I hope she only wants to give me positive results!

Have a good evening everyone and best of luck again for tomorrow Angela. 

Kiti
Member

Re: March 2021 Chemo Starters

Hello.

It deeply affected me to hear of your recent diagnosis. I just got my first dose of chemo on 3/11. I am on TCHP and while I do not feel good, I expected to feel a lot worse so this is good news. I have a lot of meds that help me out along the way. I just pray that my Higher Power will abate the worst symptoms. I know what a whirlwind it is to think you're fine one minute and be in a new universe the next. 

I am from the USA and found this forum by accident because I didn't want to feel so alone dealing with this. IT has been a blessing.

I too am gonna cut my hair by this weekend. I have a 10-inch long braid but have already given it up in my mind. Plus, you're right, if you cut your hair, you remain in control.

I had a Neulasta to help build white blood cells. Its a little shot thingie which side effects are bone pain. I take a simple antihistamine (Claritin) once a day/every day and it seems to help. That is my little tip. I don't know if that is part of the protocol where you're at. I drink a lot of Gatorade too.

I want to encourage you because I envisioned catastrophe but I have actually tolerated TCHP okay. I don't mind staying in touch as you move along in the surreal situation we find ourselves in. IT is essential to think positively but you're allowed to feel down when you're tucked in your bed in the middle of the night. I promise. 

angela8
Member

Re: March 2021 Chemo Starters

Morning everyone,

 
Well done on the fundraising Julie - amazing to do something so positive and really good to know you have the support of your friends as well. 
 
The waiting has definitely been hard but I've also found it useful to have a bit of time to get my head around things. I realised that I find it helpful to do my own research which made me feel more prepared going into the appointment with my oncologist. I found useful tips online (such as getting a dental check-up before treatment) which my hospital team hadn't recommended to me.
 
I definitely agree about the to do lists! That has helped me feel like I still have some control. In case you haven't already been overwhelmed with information, I found the Ticking Off Breast Cancer site really helpful for making lists: knowing what to bring with me to hospital, etc.
 
Thank you Julie for the tip about meditation - I'm definitely going to give that a go tomorrow. In case it's helpful to anyone, I signed up to the Trekstock community, and as part of the support pack you get a year's free subscription to Headspace.
 
Fingers crossed you hear very soon about a start date Lindsay.
 
Have a good day all,
Angela x
Jewels
Member

March 2021 Chemo Starters

Morning

The waiting has been the worst part of it, but I've come to realise that the waiting has also prepared me for what I have had to hear, I would not have any idea what HER2 was if I hadn't read it on these threads. 

It has also helped me prepare by writing lists, oh I do love a list, of things that I need to get ready for when the chemo starts etc.  Last night I ordered black nail varnish from Amazon, I also saw in Victoria Derbyshire's you tube videos that she wore black nail varnish and she said she was advised to wear it, so that's twice it's been recommended, so I'll give it a go.

I've booked in my dental check, my blood test and I'm getting my hair cut on Thursday, so next week I'll be able to clean the house, see my family without as many worries on my mind and try to relax before the treatment starts.

Good luck for tomorrow Angela, if you are anxious try and find a meditation to listen to so it can slow down your thoughts, if your other thoughts do creep in tell them to buzz off as you are off to your happy place for 20 mins. 

Lets hope today you get a call Lindsay, fingers crossed.

Have a good day ladies

Julie x

Linds7oaks
Member

Re: March 2021 Chemo Starters

Good morning ladies 

It feels really reassuring to know that others are going through the same thing and we can help each other through it. Although I am sorry that you all are....

Thanks for all your brilliant advice Shi. I have contacted the little Princess trust and I am going to send my hair to them which feels really positive. Why dark nail varnish by the way?

Well done on your fundraising Jewels, that’s so brilliant. I know exactly what you mean, it doesn’t really feel like this is happening to me either, until the treatment starts I don’t think I will really believe it. It’s such a tough time and really doesn’t seem fair. I feel the same about my hair. As Shi said, I would rather be in control and couldn’t cope with the hair on the pillow and in the plug hole. 

Angela, good luck with your treatment tomorrow. I hope it all goes as well as possible. You’ll do your marathon, just later than planned. 

I still haven’t got a start date which I am finding so hard. I am winding down at work and just really want to get going. The waiting is so hard. I had thought it was going to be this week but no word yet.

Best wishes to you all 

Lindsay

Shi
Community Champion
Community Champion

Re: March 2021 Chemo Starters

Take it one treatment at a time ❤️ Be kind to yourself and hang on tight to each other you will get through and you will 🤣🤣🤣😳😳😳💃🏻💃🏻💃🏻Through, keep safe, ring your units they want you safely through chemo ❤️ Dark nail polish helped preserve nails through docetaxol 👍 remember to drink water and flush things through ❤️ 💕💕Shi xx

Jewels
Member

Re: March 2021 Chemo Starters

Hello all
I'm also starting Chemo on 30th, mine is after having breast conserving surgery and I'm getting FEC-T treatment as I am HER2+, so this is to prevent the cancer returning.


The past two weeks have been my worst so far as I've been waiting to hear if I had to have Chemo; my thoughts have been horrible, I've also been angry, upset, OK, why me and all those other thoughts that we have no answers for.


Yesterday I put a post on Facebook and raised £500 for Breast Cancer Now, which made me feel that with the help of my friends I've been able to give something back. I've been reading these post for the past few weeks and it has prepared me for the appointments as some of the words used I'd never heard of before. Thank you all.


I'm going to cut my hair off before I start the treatment as I just can't imagine picking my hair out of the plug hole. It has so far pretty much gone by with little unease for me, lots of anxiety, but it sort of felt like it was happening to someone else, so having a physical reminder may not be as easy to handle.


Good luck ladies and I look forward to sharing our experiences on here.
Julie x

angela8
Member

Re: March 2021 Chemo Starters

Hi everyone,

I’m having my first chemo this Wednesday and am starting to feel a little bit terrified about it! I have been told that I’m going to need 4 rounds of AC followed by 4 rounds of docetaxel over the next 6 months, followed by a mastectomy.

I’ve also just been through a round of fertility preservation treatment to have eggs frozen before starting chemo.

In preparation for chemo I’ve got a pixie cut (a style I never would have gone for, but am now quite enjoying having!) and am planning to give the cold cap a go. I’ve got a heat pad ready to bring to the hospital to hopefully make it more manageable.

I enjoy running and was hoping to do my first marathon this autumn - I was gutted to have to put that on hold, but am hoping to be able to manage the odd run to help with some of the chemo side effects.

Nice to meet you all - all the best for your first treatment Lindsay, and thanks for the helpful tips Shi.

Angela x

Shi
Community Champion
Community Champion

Re: March 2021 Chemo Starters

Hi Linds7oaks, sorry you find yourself here but Breast Cancer Now and everyone here will help and support as much or as little as you need ❤️ Have they given you your cycle of your chemos? Once you get first one ticked off you settle into a routine. If your antisickness meds don’t work, ring your rapid response number they will tweak till they get combination right fir you if they don’t work first time, don’t think oh this is just chemo, that’s what your antisickness are for and your team ❤️ Drink lots of water, helps flush things through ❤️ Get to your dentist before starting chemo and have check up 👍 oral hygiene is very important 👍 keep eye out for thrush mouth or thrush it will need antibiotics from your team not an over the counter remedy. Get a thermometer to keep check of your temp during chemo and if your wee burns but no temp, ring your rapid response again it will need antibiotics. A good cream to use during chemo is udderly smooth with extra urea from amazon, lots of us found this worked very well on how dry skin gets during chemo when your average hand cream didn’t seem to hydrate skin enough. Ask away and step by step you will get through. Don’t know if little princes are accepting hair again yet, but you could see if you can donate your hair to them, turns loosing hair into a positive and helps another ❤️ You might find going to a Bob to start with better, then buzz to a grade 1 or 2 when you are ready, anyway you are in control of what happens to your hair and it does feel empowering to have control of that, but remember you are in control, might not feel like it right now but you are ❤️ Try and read mountain lion by strawberry blonde think it’s in hope and inspiration, helped lots of us over the years. 💕💕Shi xx

Linds7oaks
Member

March 2021 Chemo Starters

Hi everyone, 

I have triple positive BC and am due to start chemo next week (hopefully, date TBC). All the technical terms and abbreviations are new to me. All I know is that I am having TCHP chemo (then lumpectomy, radiotherapy, hormone therapy, etc). 

I think I am doing ok. Sometimes I can’t quite believe it’s me I am referring to, BC is just not something you ever expect to happen to you.

 

Breast Cancer Now have been amazingly supportive and are putting me in touch with a volunteer to talk to. Does anyone have any top tips for coping with the side effects? 

I am not planning on wearing a cold cap as I don’t think I can bear the disappointment and heartbreak of losing it anyway. I have long red hair so I am going to chop it all off, so it’s one thing in my control. 

I will stop there..... I would love to hear from anyone else starting chemo this month to go through it together 

Lindsay x