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May 2020 Chemo Starters

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Re: May 2020 Chemo Starters

Hi Everyone,

 

Fiona thank you . We have a Maggie’s and I really want to touch base with them as I feel my husband also needs support . Oncology say they will answer all his questions if he rings but it’s more emotional support he needs.  I was encouraged to go through Macmillan for financial advice but I will try Maggie’s. 
I wouldn’t mind a blue badge . 😊. Not that we will be allowed out of house arrest to use it 😂

How are you today? Any vomiting ? Bowels ok? 

I’m going to have to give it some thought for my song to add to the playlist . Great idea though . 

What did you do while you were having chemo? Read a book? Sorry I’m being too nosy. 😊

 

Have a lovely weekend . 

X❤️❤️❤️❤️❤️

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Re: May 2020 Chemo Starters

Hi Tricia - just a thought, but try getting in touch with your local Maggie's? They're shut down physically, but I think most of them are running limited services via remote? The welfare guy at my Maggie's is helping me sort benefits and claim PIP and even a blue badge (horrified at prospect) should it come to that! They do have a main helpline number too....if I can find it will pop it on here later.

 

Laura, what a sweet post! Yes, it's difficult to juggle what we're coping with and there are shades and nuances in everyone's stories.

I'm reading the "Book of Joy" by Dalai Lama and Bishop Tutu.....in some ways not the easiest read just now, but in other ways it absolutely is! I love how HHDL frames suffering not as a comparison but as a unifying force. Anyhoo, maybe a bit heavy! I think what we are providing here is fab (IMHO) a space to go "bleeeeeurgh, grrrrraghgle, fraggle-frock!" And have that be ok. And to step away for self care (as you did yesterday) and coming back when we can. And I think it's a great thing to ask too! 

Maybe we could come up with the May Chemo playlist to beat all playlists? I nominate Anastacia - Army of Me!!!

 

Fiona x

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Re: May 2020 Chemo Starters

Tricia ❤️ Follow your teams guidance, always ring your rapid response, keep check on temp, if your wee burns but no temp, rapid response it’ll probably be a uti and will need antibiotics, if you get thrush mouth again rapid response it’ll need antibiotics, get fluconzole don’t let them fob you off with drops, if your antisickness meds don’t work ring them don’t try and battle through, they will weak them. Keep  at least 2l of fluids flowing through during chemo ❤️ Step by step you will all get through together 👭in your own way and in your own time, there are no right or wrongs, do it your way and how you want ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Ladies,

how are you all today? Apologies I was quiet yesterday, I took some time out whilst having my treatment. It was a longer day than I was expecting as it was cycle 2 for me, but I got to meet my oncologist face to face which was great. I love her! She’s brilliant. But yeah we didn’t get home til 8pm last night and we were both completely worn out. Quick dinner and crash out last night! 

How’s everyone doing? I was thinking yesterday whilst I was in the hospital, it breaks my heart that so many of you terrified of the road ahead and the journey were all departing on together. I know that this a really difficult and unsettling time, with even more stress and worry because of other events happening in the world, trust me I feel it too, but is there anything we can do on here to help those of you who are struggling a little more? What can we do to lift spirits? 

Hoping everyone is having a lovely evening and has a restful weekend.

Laura x 😘🌹

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Re: May 2020 Chemo Starters

Hi Shi,

I have them on my to do list. I’ve never claimed anything in my life before. I guess I’m subconsciously putting it off. 

I’ve been making cotton masks with room for filters for friends and family while in isolation and asking them to donate to Macmillan. I started up a JustGiving page. Not exactly in  Captain Tom’s league but it helps me feel useful. 

I found my employer didn’t pay me my isolation pay. I had to isolate for a week before my operation. I sent the form to them. I don’t have the fight in me to chase them up but I know I have to. I could just do without it . 

On a positive note I had a follow up call from my oncology nurse making sure I understood everything the oncologist explained to me the day before. 
I now await an appointment to start my first course of Chemo. 

Tricia X 

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Re: May 2020 Chemo Starters

Tricia if you can speak to Mcmillan, there have been others who have got financial assistance their Mcmillan teams have helped. You could ring the number at the top here too and ask what forms and how to do it ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

Angie1973 - May Chemo thread here if you are starting in next couple of weeks ❤️ Lovely gang on here will 👭you 💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi ,

I have been told to shield myself and not leave the house. My husband has also been told to shield with me. We can walk the dog in the field opposite as long as we wash our hands and not meet anyone on the way . I have arranged delivery of food. Also have a network of friends to leave stuff on the doorstep. 

I’m  putting a laminated poster on the door explaining the situation so no one knocks and expects me to answer until they are a good distance away . 

My concern is , when they lift the lockdown . I guess we will deal with that when it comes . 

I am a carer in the community and was told by my oncologist that even without covid, I would not be allowed to work until after treatment had finished. 

Not sure what we are going to do financially.

Lots of Love

Tricia

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Re: May 2020 Chemo Starters

Hi everyone one on here , hope your all ok . Just wanted to ask what advice you’ve all been given whilst having chemo as regards self isolation and shielding along with other members of your family at home please  xx

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Re: May 2020 Chemo Starters

Hi Tricia

I'm a little better this morning (touch wood!) And my wee dog (bless her!!!!) Is curled up beside me and won't leave - Scottish Govt haven't issued guidelines on social distancing from dogs 🤣🤣🤣🤣

While I don't disagree with your husband - they're your scars, and maybe feeling all the feelings around that (loss, anger, disgust, denial, whatever, whatever) will enable us to fully embrace them as part of us and our journey? This is a conversation I'm repeatedly having to have with my partner. I love her to bits and she's doing my freaking nut in!!!! I'm like, love, this is my journey. You're on the partner's journey and while we're heading in the same direction, you're driving in a different lane!! You cannot control or determine what will/will not help me. That's how she copes.....fixing stuff and being in charge.....AND she's not looking after herself! However......

Tricia, trust yourself. You do you in whatever way feels best. I got my head shaved (grade 1) at the weekend. It was a shock, but I've adapted now and I'm glad I didn't have to process that shock in the midst of chemo while tired/headachey/sick etc. And it's potentially a tiny bit of control. Not looking forward to eyelashes and eyebrows going! Quite looking forward to leg and arm hair going. Very apprehensive about public hair going....I think that may be quite difficult for me, but maybe not. Reality tends to be very different from anticipation so I dunno!

I've mapped out my treatment incl the days of lower immunity. It's all colour coded and everything! Nerd, you say? Me, you say? NAAAAAAH 🤣🤣🤣🤣🤣🤣🤣🤣

 

Lots of love guys

Fiona xx

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Re: May 2020 Chemo Starters

Hi Daffodil (what a cheerful user name - I like it!)

I think it's great to have a place where you can just let it go and say the things that are maybe too painful/scary to say out loud to loved ones.

I hear your fear and uncertainty. Eventually, I think I went into a kind of survivalist dissociation for the few days before.....not consciously of course but I think my brain went "ok Fiona, enough already!"

I think it's a good suggestion to see if you can wait till the day....and don't forget, you can try it and change your mind?

I'm struggling to decide on whether to go pre/post menopausal treatment (well, rationally I do know, but my heart is going no.....I don't want to close the door on my fertile years even though periods are a total pain in the.....well, everywhere!)

Don't feel rushed, if something doesn't feel right, find out how long you can wait before making a decision (I've got 6 weeks to weigh up the hormone thing!) ask questions, even if you've asked them a billion times before! Take notes, or ask the nurse/whoever to make notes for you.

There's no right or wrong - it's just getting through this in whatever way you can and that looks different for all of us.

Lots of love Fiona x

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Re: May 2020 Chemo Starters

Hi Sarah! 

Waffle on! I think there's a tendency for most to feel like we're doing that, but I view it as being better out than in, and also you never know what is going to be helpful for someone.

I'm really sorry that you feel misled and let down by the team looking after you ☹ The changing news will have been hugely unsettling at a very difficult time.

My team were really good in that they said from the outset, this is what we're hoping for (hormone receptive) but we won't know until lab results, and they gave me dates for those, when they would call etc. I do wish everyone could have that experience as it has made a huge difference to a very difficult journey.

It is good that they removed it all. My oncologist used that term too "as far as we know" and she explained that it's one of those times when there are no absolutes and hence the chemo etc.

Do you know if they removed all the lymph nodes in your operation? I don't know a lot about that tbh, so if you haven't already found out about Breast Cancer Now's Soneone Like Me volunteer service I HIGHLY recommend it. You get matched up with a volunteer who has had similar diagnosis/treatment but who also matches you in terms of interests or personality (as near as they can). My volunteer is fricking awesome and her phone calls (we usually schedule them for Fridays) have been such a lifeline. You can call the helpline for more information or it may be better to email someone.likeme@breastcancernow.org

Its lovely to have you on here...this is feeling like a lovely wee group!

 

Fiona x

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Re: May 2020 Chemo Starters

 

Hi Everyone,

Welcome all who have joined the thread in the last few days. ❤️

Fiona I hope you are feeling ok today . Don’t forget to drink lots of fluids. I’ve ordered everything ginger and masses of different water. Our tap water tastes yuk . Oh and my daughter who is a midwife/ genetic counsellor ( she shadows the breast nurses a lot) recommended ice pops / lollies for sore or dry mouth.

Stocked the freezer up. 

 

Ali I know what you mean about feeling liberated but probably sad at the same time . My husband says I should wear my scars with pride. I’m not sure if he expects me to get my blue boob out at any opportunity or he means I should be bald and proud 😊. I said to the oncologist that I’m going to shave my head. Her eyes looked alarmed . “ Oh no you can wait until the third week. That’s when it falls out”. Is there ever a good time to shave? I kind of want to preempt the hair falling out. 

I have my appointment in an hour ( phone) . I like the idea of mapping out the journey on a calendar. I will do that once they give me the timetable . 

Hope you all have a good day today .

 

lots and lots of love 

Tricia 

 

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Re: May 2020 Chemo Starters

Hi lovely

Ali here..I'm starting on 5th so close to your date. What type are you having?

Can you make the decision on cold cap on the day based show you feel or do you have to decide in advance?

X

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Re: May 2020 Chemo Starters

Hi everyone, I’m starting my first chemo on may 6th and like everyone, I’m frightened to death and can’t think of anything else my heart feels like it’s in my mouth and feel so sick which I’m sure everyone does but just needed to come on here and say . I’m also finding it all very hard to understand and can’t decide weather to try the cold cap or not .

xxx

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Re: May 2020 Chemo Starters

Hi Tricia 

 

That's awesome that you am have the sewing skills to make hats. There are some really fantastic materials out there. 

 

I'm also going to shave my head. We can think of how liberating it will be not to wash hair for a while! I have very long hair and it's super thick so I do spend a bit of time washing and straightening.  I am telling myself it will be liberating not to do that (although I will really miss my hair)

 

Xx

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Re: May 2020 Chemo Starters

Hello everyone,

I’m so glad to have found this little group. I’m Sarah, 37 and was diagnosed on 1st April. I had a mastectomy on the 16th so two weeks post op and feeling better each day though have a lot of swelling which is quite uncomfortable. I’m trying to focus in the positives and know I’m really lucky to be in Scotland in a rural area which has hardly any covid cases so breast cancer treatment is taking place as normal. I’m also really grateful that I’ve had my two children and been able to feed them as I wanted to, as this diagnosis would have been so much worse a few years ago.

 

I went for my pathology results this morning and found out I am stage 2a, the tumour was a grade 3 and as far as they know it was all removed. It was present in 2 lymph nodes so I’m due to start chemotherapy in two weeks time, it would have been earlier but the oncologist is on annual leave currently. I’ve to have 18 weeks of chemotherapy, FEC-T then FEC-D. I then start trastuzumab for 17 treatments then radiotherapy for 3 weeks then hormone treatment after that. I’ve worked it all out on a calendar and it will be the end of August 2021 before I even start the hormone therapy. 

I’ve been in denial too I think, I just kept myself really busy with my two children (4 and 1) until operation date and didn’t give myself time to process it. I was led to believe I would only need hormone tablets so today has been a huge shock. I feel like every appointment I’ve had I have had worse news than I was expecting and I try to be positive and hope for the best but then end up feeling crushed. 

I am terrified if I’m being honest but I suppose that’s normal coping with the unknown and the covid situation just adds another difficult element for everyone. Thank you so much to those who have shared their experiences already, it has been reassuring to hear that things haven’t been as bad as people were expecting. I’m just so grateful that this group exists. 

Sorry for the huge post and for waffling on too much,

 

Sarah x

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Re: May 2020 Chemo Starters

Hi Everyone,

 

I ordered a few hats from Amazon. I went for colourful ones. I may have a go at making some if I’m up to it. 

Ive decided against a cold cap . Husband is looking forward to shaving my head 😢.

At least I won’t have to worry about my roots showing during the lock down 😊

Have to find a positive somewhere 😊

 

lots of love 

Tricia X

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Re: May 2020 Chemo Starters

Hey Laura

 

For sure meeting a group of women on here who are starting out at the same time to share is super helpful. I hope your treatment tomorrow (or port ) goes ok. Keep us posted.

 

I have a super good friend who is a nurse and works at Macmillan. She told me the weekly treatments are great as less invasive to immune system so it's great you are receiving these. Are you going by car to get to the clinic or public transport?

 

We really miss London. Lots of friends and family still there so we visit regularly.  However, we wanted more space which is why we came to Yorkshire.  Now we can walk from our house onto the Moor and although it took some adjusting we love it here. Right now we are blessed with a garden which is super awesome having my 3 kids at home during lockdown. We've kitted it out with a sandpit and massive paddling pool! 

 

I've just ordered some turbans and wraps as opted not to bother with cold cap (I'm really sensitive to cold) Anyone else got good recommendations for these? I've found some great ones on Etsy.

 

Ali x 🌈💙🏵🌷

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Re: May 2020 Chemo Starters

Hi Polly.

'Welcome' to this train journey none of us wanted to board! Sucks really, doesn't it?

I think the support on here is freaking invaluable. I'm feeling a little sorry for myself - had first treatment earlier on today. 

 

I'm also getting threads, replies and names mixed up, so (to everyone) if I forget or get confused or miss a message agopolies in advance (deliberate spelling error!)

 

Denial is totally normal (and, I would suggest at times necessary). I was absolutely fine yesterday and day before.....hitting me now!

 

Take care and love to everyone here xx

Fiona 

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Re: May 2020 Chemo Starters

Hi everyone,

My name is Polly, I’m 44yrs old and I was diagnosed with bc on the 19th March. I’ve got stage 2, grade 3, oestrogen and progesterone pos and her2 neg. So far, I’ve found this all surreal and that I’m actually slightly in denial. Don’t get me wrong, I’ve cried many tears but more so for my 3 children and also the guilt for not being at work as I’m a key worker.

Since diagnosis I’ve been at 4 different hospitals for different parts of the process and that’s mainly due to covid 19 so I’ve not really had a chance to meet my team so to speak. I’ve had surgery,  given zoladex and I take letrozole. Side effects were awful last week but they’ve all since passed.

Today I had a muga scan before chemo starts next week.  Today, reality hit me that this is actually real and I’m about to board a train for a journey I never ever imagined myself being on! So this shizzle is very real and I’m so glad that this forum is here for us all to talk about our worries and the stage that we are at.

Take care of you all and looking forward to the support we can give each other xx

 

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Re: May 2020 Chemo Starters

Hi Laura_k,

just read your post.  Sorry that you have found yourself on here joining other bc ladies 💖

just wanted to say that last year i was also on Paclitaxel once a week for 12 weeks,  Carboplatin every 3 weeks for 12 weeks and Filgrastim tummy injections as i was also diagnosed with TNBC.  I had my surgery first then my chemo.

just wanted to say good luck and stay positive,  a day at a time 💖

if you want to ask me anything then just ask.  Mini mad xx 💖💖

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Re: May 2020 Chemo Starters

Hey Ali,

You’re welcome, whilst only one persons experience, I hope by sharing it helps ease others’ anxiety. 

Initially I’m on weekly cycles of taxel and carboplatin for 12 weeks, subject to blood counts staying good 🤞🏻 

I don’t have a PICC line. I think they’re going to fit a port tomorrow though. Last week they just did by canular. Yeah a lot of my pre treatment consultations have been over the phone to minimise exposure. I’ve been able to gain a lot of info and reassurance on these calls. My Oncologist is brilliant, and she’s very witty. I get to meet her face to face tomorrow which will be good. I think it’s so important to have a sense of humour going through these journeys. 

Oh cool, how did you enjoy London? 15 years is a long time, how are you finding life in Yorkshire now? I’m being treated at the London Clinic in central London. Bit of a trek from home each time but the care I’m receiving is fantastic. I’m so grateful. 

Its sounds like you have a lot going on at home already, without adding this stress into the mix. But you’ve got this 💪🏻 and you have this forum for support now too.

Have a good evening ladies x 

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Re: May 2020 Chemo Starters

Hey fiona

 

That's fab that you have completed the first cycle. Awesome news.

 

Hope you are resting and doing ok?

X

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Re: May 2020 Chemo Starters

Hi

Great stuff! Glad you’re home safe and sound from cycle 1. You’ve now faced the the unknown and come out the other side! 💪🏻 

Ah thank you, that’s very kind of you to say. I really hope it helped. Yes the first evening after chemo is an interesting one! My boyfriend said I sounded drunk for a couple of hours after we got home slurring my words and what not. It was very entertaining! I had a headache and felt a bit shakey / jelly like, but I think that was mostly linked to the fact I’d been in the hospital for 7 hours and was only given a light lunch so I was starving! Yeah I would agree you’ve most likely got a stress / tension headache from the stress and anxiety of the day. You should be pretty well hydrated right now from all the saline! 

Get a good meal down you and some rest and take each day at a time over the next week. Each one will feel different. 

Take care,

Laura x

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Re: May 2020 Chemo Starters

Hi Laura

...Fiona and Tricia too 😘

So great to get your insights Laura. Am so pleased you are feeling relatively good following your first cycle. Are you doing chemo every 2 weeks? 

I'm in North Yorkshire and here my hospital has agreed to do a consent meeting by phone on friday to reduce my number of visits. Then Monday I get a picc line fitted (do you guys have these in already?) And Tues I will have first drugs. I'm planning on 3 rounds of EC then 9 weeks of paxitaxil . I've already had a mastectomy (which was fine btw. It was 5 weeks ago and I've totally recovered)

 

My GP spoke to hospital for me who agreed for me to have someone with me for first round as I have been feeling SO anxious about it. With my 3 little children at home I'm not sure how this is going to work for me over coming months. I do have a partner who is amazing but he is also trying to rescue his business from folding during the pandemic (I've had to stop work completely and we are both self employed so the timing is not great!)

 

I'm trying to focus on one day at a time and so reassured by your experience Laura. Which hospital are you at? We lived in Hackney for 15 years and only moved to Yorkshire 5 years ago.

 

Wishing you all a peaceful and restful evening

Ali x

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Re: May 2020 Chemo Starters

Hi Fiona

Well done! 

Pleased it went well.

 

love 

Tricia

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Re: May 2020 Chemo Starters

Hi Laura

Thanks for sharing such a positive and informative post! I'm just home from 1st cycle. Bit of a headache but I think that's probably from anxiety more than anything else! Pee has already turned a syrupy strawberry/orange from the epirubicin! (More overshare Haha!)

Way too early to say how it's gone, just glad to have first one under my belt. 

Stay safe and well everyone......I'm sure I'll check back in when I'm less sleepy. 

Fiona xx

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Re: May 2020 Chemo Starters

Hi Laura

Firstly sorry to hear your diagnosis. That’s a lot of treatment !  All you ladies are so much younger than me. I’m quite shocked but struck by your positivity. ( I’m 58) . I have a very strong family history of breast cancer. No BRAC gene. 

Your experience sounds really positive Laura and that has helped. I had my heart scan this morning . It’s really strange when you can’t see people’s faces because of masks. It does make me feel even more alone . I understand why they have to wear them and I’m pleased but it makes the whole experience a little distant. 

I think my battle will be getting paracetamol! I’ve tried stocking up but it’s hard when you are limited . I’m hoping they will give me a prescription for lots of tablets . Unfortunately I can’t take anti inflammatory or codeine. I used up all my paracetamol from the operation . Can’t get it anywhere at the moment, plus I’m self isolating in the run up to the treatment . 

This pandemic has really put a spanner in the works. I ordered what I thought was a small chest freezer yesterday from Curry’s .When the email came through I realised I’d ordered a fridge 🤦‍♀️. Tried to phone to cancel order but the phones just went dead after 15 minutes. Tried so many times . No other way of contacting them. In the end I posted on their Facebook page and Twitter account . Luckily they took pity on me and stopped the delivery . 😅. I can’t believe I have chemo brain before I’ve even had the first injection .😊

 

I’ll keep you updated and look forward to chatting again soon. 

 

lots of love

Tricia X

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Re: May 2020 Chemo Starters

Hi all, 

Hope everyone’s ok and staying safe and positive.

I’m Laura, I’m 34 and was diagnosed with stage 2a, grade 3, triple negative breast cancer on 2nd April. My treatment plan for TNBC kicks straight off with chemo and I had my first session last week on Wednesday and my second cycle is tomorrow. I’m being given a combination of Paclitaxel and Carboplatin chemotherapy drugs once a week for 12 weeks. After that I’ll probably have AC drug once a fortnight for 4 cycles. After all that, I’ll have surgery. 

I guess I’m a week ahead of you lovely ladies in this group, but my start date was close to the cusp of May I felt I would probably fit in a little better in this thread than the April one. 

Having had one session of chemo already, I can say from my personal experience that it wasn’t anywhere near as bad as I thought it was going to be. I was really quite anxious for the couple days running up to the appointment which is completely normal, but in hindsight I really needn’t have worried! But with pretty much everything following a cancer diagnosis, each of these steps and challenges are ultimately a fear of the unknown and once we’ve been through them once and experienced it, it’s no longer an unknown. 

It was a long day, there was a lot for the team to do and go through and because I’m having two different chemo drugs, they have to be infused separately, but everything went smoothly, the team were fantastic, I was really well looked after and I was given many opportunities to ask questions, raise any concerns I had etc. The care I received was faultless. They’ve even taken extra precautions with post treatment meds including sending me home with injections that we have to administer at home to help keep my white blood cell count high, and of course anti sickness meds to help keep nausea at bay. 

I'm now writing this, with my next appointment scheduled for tomorrow and feeling as comfortable as I can about things. 

I also tired the scalp cooling last week in a bid to hopefully hang on to my hair for as long as possible. It actually wasn’t too bad, so I’m going to try and persevere with it. The first 10 mins were the worst, after that the discomfort from the coolant eased considerably and I didn’t really notice it much after that. The hat got a bit tight and heavy towards the end but not painful. So if you’re thinking about giving it a go, then do so and just keep in mind that if you can make it through the first 10-15 mins then the worst is definitely over! It just feels like a really extreme ice cream headache and then it calms down! 

In terms of side effects, and again a vain attempt to put your minds at rest, I've been really lucky so far. No nausea or vomiting, hurrah! I’ve had 2 episodes of acid reflux, some insomnia which was actually caused by white blood cell count injections, some flu like aches and pains (day 4 post treatment) and constipation (apologies for the overshare!). The pharmacy in the chemo unit where I’m being treated sent me home with a “bag of goodies” and an information pack that basically listed each drug I’d been given and what to take it for.  The only one I’ve had to use in the last week is the one to help the constipation. 

Keep a note of any side effects you get and when you get them, what time of day, how many days after treatment etc. And try to use that first week after your first session as a learning curve. Learn and understand how your body feels on different days, when you have energy, when you need to rest. It really will help you build a new routine and build chemo into this new routine. Before you know it, your appointments will just become another thing on the to do list. 

 

Sorry, I appreciate I’ve talked about my experience a lot so far, but I’m hoping that for those of you yet to start chemo with your appointment looming, I wanted to try and share my experience so far to share a little reassurance or comfort that you will be well looked after. Yes this is scary, particularly so at the moment with everything else going on, but we’re in it together and we can share our journeys on here and support each other. 

Take care ladies, stay safe and do try and keep positive. And questions please don’t hesitate to ask me 😃
Laura x

(I’m in South London) 

 

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Re: May 2020 Chemo Starters

Hi Ali and Fiona,

 

Fiona you share the same worries as me. I read all the booklets on the side effect of the drugs. Of course I think I’m going to get them all! I can’t help thinking of them as poison when normally you have medicine to make you better not worse! 

i feel confused and it doesn’t help when you talk to your oncologist and nurse when they are behind masks. It’s not reassuring as I can’t see their facial expressions. 

Im really sorry Ali. You have so much to deal with . My children are all grown up but it’s hard because they can’t be there for me. Just my husband and out 1 year old Labrador . I can’t image how hard it is for you . I really hope you have a good support network even if it’s a bit complicated with covid-19. 

I have my Echo scan tomorrow. Good luck Fiona for tomorrow . 

Tricia 

P.S . I’m in Cambridgeshire. 

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Re: May 2020 Chemo Starters

Hi Tricia

 

I have poor mental health just now (complex PTSD-ish, depression, anxiety) and it's kind of weird the ways it shows up......I'm sometimes anxious about stuff that really doesn't seem that important (can't think of an example at the mo......) and other things that are really tough (infection, financial impacts etc) I'm almost fatalistic. My mood's not been too bad last few days, but last week was a doozy!  That was not a good place to be! I guess now, I'm just waiting for tomorrow and then watching to see how it will impact me.

 

Good to meet you on here, take care

Fiona x

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Re: May 2020 Chemo Starters

Hi Ali

I thought I recognised your name from April thread! I posted there, too!

Oh wow! Your cup is very full indeed, isn't it? I can't imagine how that must have been with diagnosis and surgery etc. And with the pandemic, it's not like family and friends can "lend a hand". I don't have children myself, my sister in law has a 6 year old (aka the Duracell bunny!!!) and my wee niece, just over 3 months old and my heart has gone out to her! All I've wanted to do is go round and lend a hand, or take my nephew for a night or two, or even have a cuppa and blether.

Do you have a partner at home with you?

 

Maybe the staff at your oncology unit can discuss a contingency plan of action with you if you were to have a fever/reaction? At least that way, you might feel as if you have a tiny bit of control and you can have a small peace of mind knowing that something is in place and you don't have to try and organise that while feeling unwell? They might know about other sources of support? Community care and support is still happening, I just have no idea if/how/what might be available in your area for your circumstances!

I do hope we can offer support to you and each other. 

 

I do feel very grateful that I am in Scotland. The English NHS seems to be operating a bit of a postcode lottery re cancer treatment and I'm sure that is another stressor folk don't need at this time. My team were as reassuring as they could be about the covid risks/chemotherapy, so I guess I'll just have to trust them!

 

Hopefully tomorrow will go ok for me and I'll be thinking of you on the 5th.

 

All the best

Fiona x

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Member

Re: May 2020 Chemo Starters

Hi both,

 

It's nice to meet you here. I had also commented on the April thread but am due to start chemo on May 5th 💜

 

I was diagnosed with triple negative stage 1 grade 3 on 13 March and had mastectomy 27th March. 

 

I will now have 3 rounds EC then 3 rounds of doxitaxil OR 9 weeks of paclitaxel (depending on where pandemic is at when I get to that)

 

I am incredibly anxious about having chemo during the pandemic.  I have 3 tinys at home with me (age 6, 4, 2) and this is a really hard time for us without chemo thrown into the mix. I'm mainly anxious about being in hospital for administration of drugs, and what would happen if I got admitted with a fever. 

 

Hoping that we can share here and offer support as realise you are also in the same boat. 

 

With love

Ali 🥀🌷💐🏵

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Member

Re: May 2020 Chemo Starters

Hi I’m Tricia. I was also diagnosed with grade 3 ER+ Her2+. I’m due to start Chemo in 2 weeks after an Echo scan . I had a lumpectomy on the 10th April. No lymph node involvement. My chemo is TC 4 cycles every 3 weeks . Herceptin injections x 9 then Radiotherapy followed by hormone therapy. I’m now planning our shielding at home. On to Gov site to register so I can get food delivery slot. ( impossible at the moment ) . 
I suffer anxiety so really worried about side effects but not worried about hair loss. 
X

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Member

Re: May 2020 Chemo Starters

Hi, I'm Fiona. Or Fidget - I really don't mind! I'm actually starting chemo next week 29/30 April, but it feels like it's nearlier May than April.......

I was diagnosed 18th March with breast cancer. Later confirmed as invasive, grade 3, er+, her2+ cancer.

I had surgery to remove the tumour 3rd April and the pathology results thankfully came back with clear margins and no lymph node involvement. Because of the grade and her2, I will now be having chemotherapy (6 cycles every 3 weeks) with Herceptin and hormone treatment (which is a bit confusing for me just now). 

I'm apprehensive about next week, but kind of looking forward to sharing and learning and supporting at the same time.

 

I visited the chemotherapy ward yesterday when I had my appt with the oncologist which I think was helpful, but might not be possible everywhere due to covid. I burst into tears on the ward but I'm glad I got that over with!

The oncology team were also really reassuring about the risks of covid and will be assessing the course of chemo regularly to balance the therapeutic benefit against infection risk. So I guess I feel as confident as it is possible to feel under current circumstances! Still bricking it, but I guess that's normal.

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Community Champion

May 2020 Chemo Starters

Hi 👋 
 

This thread is for anyone due to start chemotherapy in May 2020.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

 

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

 

Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/

If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

 

Best wishes xx