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July 2020 chemo monthly starters

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Re: July 2020 chemo monthly starters

So sorry I just realised that I called you fiona 😬

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Re: July 2020 chemo monthly starters

Hi fiona, it's been a interesting week that's for sure! I have had a salt/metallic like taste in my mouth that has drove me crackers so stock up on extra strong mints! Milk and lemonade seem to be the drinks of choice for me. I have been resting a bit more than normal as I'm more sleepy tired rather than fatigued but seem to have a fuzzy head all day. Nauseated feelings most days but only been sick in the early hours of this morning.ive have still walked the dog, made teas and celebrated my now 9 year olds birthday yesterday! Not sure if symptoms will get worse but so far not as bad as others have had its xxx good luck on Tuesday 

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Re: July 2020 chemo monthly starters

Hi Tara how are you 2 weeks in from the 2nd FEC? I get my 1st on Tuesday. Although I am scared I am weirdly excited to get started and get closer to getting better. 

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Re: July 2020 chemo monthly starters

How are you feeling now Claudia? You are a week ahead of me as I get my first FEC on Tuesday. I’ve been ordering beautiful headwear from RosettelaVedette to cheer me up. It’s expensive but less than having highlights and a haircut! 

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Re: July 2020 chemo monthly starters

Sorry for spelling mistakes. Fat fingers from steroids make it hard to type on phone. You will get used to this with me!

 Tara xx

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Re: July 2020 chemo monthly starters

Hi Nancy,

I’m Tara from the June chemo starters. I have had cycles of FEC, due my third Thursday. I was not able to take my husband or anyone for support to my treatment as it is not allowed because of COVID. Not sure if things are changing in other hospitals. It would be great if you could take someone with you, but if not going alone is not too bad. I have really enjoyed doing this part of my journey alive. It makes you stronger and if you have children  they can see that Mummy has to go to hospital for the strong medicine that makes her better. It makes them worry less as it is doable. I have also made some great friends there. The radio is always playing on the unit I ho to and we have a little song along to all the old songs we used to dance to in the late 90’s.

It is quite natural to worry about results. I don’t know about anyone else but this is the hardest part for me? It is great if everything is clear, but if not try not to worry they have medicines to treat and cure a lot of cancers these days. Cures are being found all the time. Try not to worry x

 

 You have been seen and have in a place really quickly. I am the same, diagnosed on the 20th March, surgery the 9th April and chemo the 11th June.

 

 Good luck and best wishes!

 Tara xx

 

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Re: July 2020 chemo monthly starters

Hello Mai and everybody. I feel I am a bit late to the July party! I only went to Breast clinic on June 29th and things are whizzing along too fast for me to keep up. I have a lockdown lump that I found after my mammogram was delayed in March. It seems I have a 23mm grade 3 tumour with at least one 25mm LN and ER + HER2 +. I am starting with chemo first before surgery so get my PICC line on Monday and first treatment on Tuesday. Fast or what? I think I am having FEC x 3 then T plus Herceptin and Perjeta x3 before surgery. I opted for  CT scan and Bone scan to check for secondaries but am now terrified of the results. I am a GP but it looks like I might have suddenly retired as they have told me I can’t work during treatment. I think I am still in shock! I am a keen cyclist so have borrowed an ebike to get to appointments as the Unit is only a mile away. 
I have read all your comments and picked up lots of tips. One question - did you take anybody with you for your treatment sessions? 
Nancy Blackett (sailor and Amazon pirate)

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Re: July 2020 chemo monthly starters

So sorry you were so sick Kate, let’s hope they can adjust your meds and you’ll have a better experience next time. They do say we should have a bag packed at all times just in case, as many people will end up at the hospital at some point.

I love the ‘they’ve got you’ ☺️ and I agree that even when it’s the last thing you feel like, how important a little walk a day is. 

love

Heather xxx

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Re: July 2020 chemo monthly starters

Hello Amy, 

thanks so much for joining us and for sharing your story. I send big hugs to you and your family. God, the strength of us women when we are faced with such utterly terrifying and overwhelming situations which push us to our mental and physical limits. It might not always be pretty, but getting through a day at a time is bloody awesome I think. 

It was expected that my breast cancer was secondary for several weeks, so I have some small insight into that tornado of emotions and thoughts. I constantly had to bring myself back to right now and each step and when I could I lost myself in the crazy worlds of my kids. 

In terms of chemo, I started eventually on Monday a week ago after several delays and an unexpected PICC line fitting (it was weird but ok and will make getting veins easy from now on in). I felt like you, dreaded it but also couldn’t wait just to get on with it.  The actual administration went smoothly and uneventfully and my nurse was lovely.  The mint tip worked for the metallic taste, I sucked M&S hard mints throughout the chemo being administered, I could taste the metallic taste at the back of my tongue and edges, but kept moving it around. I’ve had a super salty taste most of the time since though, literally like I’m drinking sea water even if it’s apple juice, and most things taste a bit weird, but not too bad. 

My face felt very sensitive, inflamed, hot the whole week after chemo, even though my core temperature was fine each time I took it. I felt really swollen, even my arms, but my husband didn’t think I actually was physically swollen. I called the line eventually as I felt uncomfortable and fed up with it, and they advised to try Piriton, I think it gradually eased it a bit. I have been very fortunate and have only had small waves of nausea, fingers crossed. I couldn’t sleep for a few full nights, hard to say how much was chemo and how much is my mind, I try Calm, etc. but nothing helped. Finally on Saturday I started to sleep and I’ve been making up since, thank goodness. I felt pretty low by the end of the week, which my chemo nurse told me to expect. I started a new box set which distracted me and also tried to put it into words to my husband, as I think I’d find it easy to withdraw when I’m feeling like that. He wants to help, there just isn’t always anything anyone can do to make any difference, mainly to the fatigue. 

In the days after chemo my appetite varied hugely, but when I felt hungry I really fancied very fresh fruit like watermelon and pineapple, cereal, I also had cheese on toast (ultimate comfort food?!) and lots of very cold drinks. Drinking lots of cold water in the first few days made a lot of difference and my husband made me smoothies. 
All the best for Wednesday, and for the coming week, small steps ☺️ and be kind to yourself.

love

Heather xxxxx

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Re: July 2020 chemo monthly starters

Hi Amy, so sorry to hear about your diagnosis and thank you for your well wishes. I will virtually hold your hand through your treatment and hopefully draw strength from the support you will receive from all those who are on here xx

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Re: July 2020 chemo monthly starters

Hi Amy ❤️ I know there are other tnbc’s with secondaries that are on that thread, they could share knowledge with you 👭when you are ready 👭 just take it step by step and hang onto Ttylers gold hot pants 😁 she’ll 💃🏻💃🏻🕺🕺💃🏻💃🏻 With you through chemo 💃🏻💃🏻🕺🕺💃🏻💃🏻 There are no right or wrongs do everything your way in your own time ❤️ A good story on here is mountain lion by strawberry blonde it’s been inspirational for lots of us ❤️ 😘💕💕Shi xx

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Re: July 2020 chemo monthly starters

Hi AmyC

cheers to you. I’ll toast you with my vomit squash. I will pretend it’s wine. Love a glass of rose!

This ain’t going to beat you either I will carry you with me!

 Enjoy your evening the hammock soundS amazing!

lots of 💕 

Tara xxx

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Re: July 2020 chemo monthly starters

Thanks everyone for the messages. 

Sorry to hear about your bad reaction Kate and hope next time is better for you. You are right about placing faith in the medical team. I am very lucky that I’m in London and my local hospital (10 mins walk) is partnered with Guys where they have the tnbc research centre and early access to drugs and trials etc. 

Your list of coping strategies sounds very good. I’ve been trying to do 10,000 steps a day for the last couple of weeks. One of the nurses said to me that if I can’t do anything else, just focus on eating, sleeping and exercise. It does help to keep it simple like that. I just joined audible too so need to get some books downloaded. 

Ttyler thanks for your support, I can tell this cancer doesn’t stand a chance against you! I will try to remember your words. 

Thanks for the tips Shi, I have looked on the secondaries threads but it’s all a bit overwhelming at the moment. I think the only way I can cope is to think about the next step, which for now is getting the treatment started  and finding out what the new routine is going to be like. 

Right now I am in my hammock in the back garden with a little glass of wine and my partner is putting our little boy to bed. Going to try to keep busy with housework and errands the next couple of days and will face the first treatment on Wednesday the best I can. 

I really do appreciate the replies, thank you x 

 

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Re: July 2020 chemo monthly starters

Hi Amy c, glad you have found the threads, there is also the secondaries threads which will be useful for you if you jump on there too ❤️ There are trials some on hold because of COVID-19 but you can research them and discuss with your onc, so when trials restart you could get in one. M d Anderson in Texas USA is worth keeping an eye on too, they do quite a few for tnbc ❤️ You can always start JustGiving page if they have treatment that you could try ❤️ Also you can call the number on here, speak to a nurse or use the someone like me option too ❤️ 👭 💕💕Shi xx

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Re: July 2020 chemo monthly starters

Hi Amy,

I read about your diagnosis and could not go without responding. I have jumped in from the June chemo starters.

 I have been diagnosed with TN breast cancer and are having 6 rounds of FEC-T. I am not going to lie I don’t know anything about secondary TN breast cancer but do know ladies that have weekly treatment for more advanced cancer and can say that from what I have been told the Se are not as bad. I think you may feel tired but as far as I am aware the sickness and nausea does not happen as much. 

 I can’t imagine what you are going through, but like Kate has said you have to trust your team. They are doing everything they can to ensure you live as long as possible. One person I have met in my journey is terminal and has children. They live their life to the full and to be honest if it wasn’t for meeting them on the chemo unit I would never have known.

 I want to say that you have my support and I will be with you all the way holding your hand. You got this girl! You have to your a mum. So stick your middle finger up to it like I do and tell it your not taking me away from my child! I know that this is what all us mums do.

 Good luck for Wednesday and for the other ladies that have chemo this week. Remember you are all warriors.

 Lots of 💕 

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Re: July 2020 chemo monthly starters

Hi amyc 

Big hugs to you - what a time of it you must be having. So much to get your head round, you’re bound to be scared and in shock. 

A medical family friend said to me, not long after my diagnosis, ‘they’ve got you’ - meaning the NHS- and I do find this reassuring. I hope you can believe that you are in expert hands and that they’re going to look after you and give you the best possible treatment and care.

I’m using the cold cap and found it no bother. Time will tell if it works, of course - I’m only one session in.

I was very sick, unfortunately- had to be readmitted to hospital and put on a subcutaneous drip to get the sickness and nausea under control. Grim, but they now know that I need stronger drugs than expected and can adjust for the next cycle. I get quite badly travel sick, which was maybe a warning...

But everyone seems to respond so differently and hopefully your treatment will go smoothly. I gather Paxlitaxel is a bit easier on the nausea front...

We all find different ways to cope and I’m sure you will absolutely find yours. For what they’re worth, here’s what’s keeping me going, and vaguely sane...

- My kids (their day-to-day struggles and joys go on regardless)

- cheese on toast (I think I’ll be living off it for the next few months!)

- drinking loads of water (sipping)

- audio books 

- a walk every day.

 

Sending strength 

Kate x

 

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Re: July 2020 chemo monthly starters

And I should have said good luck for your first session tomorrow Claudia xxx 

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Re: July 2020 chemo monthly starters

Hello

Hope I’ve done this right.

I have my first session of chemo starting on Wednesday. In one way I can’t wait to get started so that I’m taking some action against this horrible cancer but in another way I’m really depressed about starting what is going to be a lifetime of treatment(s). 

I was diagnosed a couple of weeks ago with secondary TN breast cancer with spread in my lungs. No previous illness so it’s all a bit of a shock. I am 39 with a 21 month old son and feeling like my life has been turned upside down and taken away from me all at once. 

I’ll be have 18 sessions of weekly Paclitaxel initially. Apparently the side effects are not supposed to be too bad as it’s a lower dose given more often. Still pretty scared though. I’m going to try the cold cap and see how I get on with it. 

Hope everyone else is getting on ok. What a horrible thing we are all going through 😞 

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Re: July 2020 chemo monthly starters

Hi July Warriors

 

Hope you're all OK, how are things progressing with your treatment plans? I'm due for my pre chemo checks today which I'm pleased about. Getting to this stage has dragged terribly and I'm have pain in my breast which happens intermittently. My chemo starts on Monday and I just want to get it underway. I'm not very patient xx

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Re: July 2020 chemo monthly starters

Hi Tara 

Some fantastic tips there thank you so much for all your comments on the July thread it's great to hear from someone who is slightly further ahead of us. I'm going to purchase some mints this week and take a paracetamol ahead of my 1st chemo session xxx

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Re: July 2020 chemo monthly starters

Hi Helen,

Glad you have not been sick. That is like me I felt nauseous but not actually been sick. 

 My second infusion went well. My husband said I looked more well when I came out this time. A tip I learned this time. If you suck mints as they are giving you the chemo then the metallic taste is not as bad. My taste buds so far are not too effected touch wood. Last time I did not suck mints and the taste was awful for nearly 2 weeks afterwards. Just a mild mint, I had Murray mints. Also I took a paracetamol half an hour before I went to chemo and the sinus pain was not half has bad. I had the headache before I went to sleep on Thursday night but not half as bad as before. I have wretched a couple of times but not been sick.

 I feel well to be honest. Hope it continues like this to be honest. I’m on FEC-T. Have 2 more infusions of FEC and then 2 T. Hope the side effects of this are not too bad.

 Have a nice day!

 Tara xx

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Re: July 2020 chemo monthly starters

Tara thanks so much for all your advice, very much appreciated. I have different anti-sickness tablets, they seem to have worked in that I have felt nauseous but not actually been sick. I have been wearing the acupressure travel wristbands on the advice of the chemo nurse, can’t decide if they make a difference but worth a try!  I am finding the headache and absolute exhaustion hardest to cope with, and the awful taste in my mouth. The drinking masses of water is definitely the best tip thank you.

 

I hope you aren’t feeling too grotty after Thursday, do you feel it is worse second time around or the same? Sending everyone best wishes xxxx

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Re: July 2020 chemo monthly starters

Hi Claudia, I know what you mean about children but used to you being away for so long. Mine are the same.

 I just tell them that mummy is going to get her strong medicine so that the lump does not come back. It’s unfortunate that they have to be part or out journey but they will be so strong at the end.

 Hope everything goes well with your treatment!

 Sending lots of love 💕  Tara

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Re: July 2020 chemo monthly starters

Hi Tara I really appreciate your help thank you, I'm just trying to get to grips with things, the kids don't like it when I'm not home for any length of time so at least I can reassure them. I hope three grogginess passes soon xx

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Re: July 2020 chemo monthly starters

Hi Claudia,

im home now from my second round of fec. It took about 3 hours today, but that was only because my nurse had 4 patients to get through. The actual fec only normally takes 30 minutes but I have anti sickness pushed through before hand. You first one will probably be 3/4 hours.

 Definitely take snacks. I took crisps, fruit and a pastry today. You do get offered a sandwich but it’s if they gave what you like.

 Sorry for any spelling mistakes my head is a little groggy.

 Tara xx

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Re: July 2020 chemo monthly starters

Thanks Tara, 

That's a great help, I may take some snacks to eat and lots of things to keep me busy xx

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Re: July 2020 chemo monthly starters

Hi Claudia, 

 I am currently having my second round. I was at the hospital for around 4 hours for my first treatment.

Hope this helps.

Tara x

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Re: July 2020 chemo monthly starters

Hi 

I am due to have my first chemo session on the 13th July does anybody know how long I should be there for, my hubby said it could be between 30 minutes and 6 hours 

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Re: July 2020 chemo monthly starters

Thank you so much Kate, and I wish you well for starting your treatment too.

We have quiet beaches near where we live, so I’m going to go to the sea this afternoon and really breathe in the sea air. 

I don’t know whether anyone else has been advised this, but my breast care nurse today suggested taking a thermos into chemo for warm drinks, as facilities are limited at the moment (obviously will vary by area). My veins are also quite tricky to access, so she also suggested taking a hot water bottle on the journey and holding it over the back of my hand as this can help. And drinking lots of water on the way. Just a tip in case anyone else has that issue.

I agree, with lots of the pandemic complications we just have to wait and see how it unfolds over time. There are so many unknowns. A huge live lesson in coping with uncertainty and not being in control!!

Take care

Heather

 

 

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Re: July 2020 chemo monthly starters

Hi Heather,

Good to hear from you - I’m glad you’ve joined us. I completely identify which your sense that this is like jumping out of a plane! I woke up in terror a couple of times last night. But, like you, just want to get on with it too. I find reading others’ experiences reassuring- it IS doable.

Re the cold cap - I’m planning on giving it a go. I found the thread on cold caps (not sure how to insert a link to it here) helpful and encouraging. Definitely worth reading before you decide.

I haven’t yet decided on the kids’ return to school- I definitely think it won’t be at the very start of term as I’m anticipating a certain degree of chaos in schools as they work out how best to operate. My breast care nurse has said that I can have socially distant walks with healthy friends so I’m hoping the kids will be able to do that too. Harder with wee ones of course. Another teacher friend said that the schools have got so much better at supporting kids who need to learn at home, which is true and reassuring.

Wishing you all the very best - plus deep courage and a good couple of nights’ sleep before Thursday. 

Kate xx

 

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Re: July 2020 chemo monthly starters

Hello everyone! 

I’m Heather and I’m due to start chemo on Thursday. I meant to join this thread weeks ago, but the weeks have disappeared in a whirl of home-schooling, appointments, sorting out work and home .....  and awful post-surgery Tramadol withdrawal symptoms (just what I needed!).

Thank you all for sharing your stories and experiences, fears and tips. I’d never wish this on anyone, but it’s a huge comfort to go through this virtually with a group of women who really do understand and want to support each other.

I have a rare subtype of metaplastic BC, triple negative, grade 3, stage 2b. I had a first surgery at the end of April to remove a 37mm lump and one lymph node. The node was positive and pre-cancerous cells were in one part of the margin from the breast, so I then had a follow-on surgery in May to remove more breast tissue and an axillary clearance. No further lymph nodes were positive and the extra breast tissue was also clear thankfully. 

I’m having 6 cycles of EC-Docetaxel chemo, starting this Thursday. I veer between feeling positive and wanting to get on with it and a feeling of stepping out of a plane. 
My children are 5 and 8, and after months of lockdown the thought of many more months and them potentially not being able to return to school in September is pretty daunting. They’ve done well so far and we’re fortunate to have a garden, but as someone else said, knowing that other people are starting to socialise and travel now is making it tougher for them. My son said to me yesterday when we had to miss his Nanny’s 70th get together with his cousins and he was utterly devastated, ‘why did you have to get cancer? It’s so unfair’. I agreed with him, but promised we’d make up for it with a big celebration once all of this is over. 

I’d be grateful of any tips from those of you slightly further on in their chemo journey. I’m still undecided on the cold-cap for example. It will be great to just hear about you all as you go through the journey and encounter many of the same feelings, fears, reactions and physical changes. I’m trying to really reign myself in and focus on each small step at a time, for me that’s how I can manage it. And letting go of trying to do and be everything I did/was before ... that was a challenge! 

I send you all strength and positivity. If I can help you in any way I will. Thanks in advance for your support.

Heather xxx

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Re: July 2020 chemo monthly starters

Forgot to say if having injections take out of fridge 30 mi utes before administration and do alternate sides of tummy button.

love Tara xxx

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Re: July 2020 chemo monthly starters

Hi Helen,

 I don’t mind you asking me anything. If I can help in anyway then I will.

 I had the sickness feeling for the first 2/3 days. I felt like I had been travelling in a car reading a book. Travel sick really. They gave me anti sickness meds emend and domperidone. Not sure how you spell it sorry. 

 When I got home from chemo I took a paracetamol to try and take the headache away. This did not help much but the next morning it was much better. I kept drinking water lots of it as I had a taste in my mouth like I had been swimming in salt water. I could not tolerate anything but water and I was advised by my bcn to drink lots to flush the chemo Out. This really did help. When I went to bed I had terrible hot flushes and thought I was going to be sick, ran to the loo but some how managed to avoid being sick. I slept downstairs on the recliner with window open behind me as I found it better not to lie completely flat. Also I tried to lie in my left side. My youngest has reflux and I was advised to prop his bed up and lay him on his side as a baby.

 The day after chemo I took domperidone as soon as I woke up and the had porridge for my breakfast followed by my steroid. Then at 11:30 had my emend anti sickness as this was 24 hours from having it the day before. 15/30 before I ate anything else I would take the domperidone each day until 1week ago. If I feel sick now when I wake up I take one. Don’t wait to be sick take one if you have them before you are sick.

I had 3 steroids to take a day got 3 days after chemo. I always took them at 8, 10 and 12. Need to take last one before 2 to ensure you can sleep. I had no problems sleeping after first night. Had to go to the loo lots because of the amount of water I was drinking.

 Not sure what meds you have for sickness but if you don’t have them then ask for them. You don’t have to be sick.

 I had injections for first 8 days, I am scared of needles but managed to do it myself it is not painful. Pinch skin at side of belly button and gently push in. Then push needle down and once done it springs back in itself so you don’t prick yourself when it comes out.

 I got terrible heartburn in day 2, this made me feel sick. Rang ward and got lanzoprszole. Fantastic stopped pretty much straight away.

 Try to drink lots and don’t wait to be sick to take sickness meds. Also you can take paracetamol but take temp first as this can bring your temp down.

 I am going to take paracetamol before chemo on Thursday to try and manage the head pain better this time.

 Hope this helps 

 lots of love 💕 Tara xxxx

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Re: July 2020 chemo monthly starters

Hi Tara, I hope you are having a good week. I have found your posts really helpful thank you. I had my first chemo session this morning, of EC, and have the headache you describe and feel slightly nauseous too. Do you mind me asking how long this lasted for you?

Thanks! Helen xxx

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Re: July 2020 chemo monthly starters

Hi Kate, thanks for your message and kind words, much appreciated.  Had my first chemo session this morning, not too bad all in all. I have a slight headache and feel tired but I didn’t sleep much last night.  Have a large bag of pills to take at various times and need to start doing the tummy injections tomorrow - I feel quite nervous about doing that as I am rather squeamish, the nurse said it is easy but she does them every day!

Yes the whole decision about sending the children back to school is so difficult, I know my 17 year old will be very careful and think it would be good for her mental health to go back in September, but my 7 year old is a completely different matter! He is a nightmare to get hands washed and doesn’t really understand social distancing. I think I will see what the infection figures are by then and then decide. Would certainly be better for my mental health to have him back in school!

All best wishes, Helen xxx

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Re: July 2020 chemo monthly starters

Hi Kate,

 No I choose not to use the cold cap purely because I do not want to be in the hospital for longer than I have to and also because I suffer terrible headaches. I don’t know what chemo you will be having but I am having FEC-T. I found that when the F part of it was administered it was slightly more uncomfortable in terms if I could feel pain in my sinuses and in my forehead above my nose. It was bearable but a little like fuzzy head. I have been advised to take a paracetamol before my next round. If you go onto June chemo starters I have listed pictures of me with my head shaved. Grade 3. My children and husband did it on Thursday, it was coming out in clumps so I took control and got it shaved. I also have a picture of my wig and one of how it has started to fall out more today. I am near enough bald now at the back.

 My oldest was a bit horrified at first but he has got used to what is happening the more we talk and has even offered to rub coconut oil into my head this evening.

 I think it can be a little scary for children but like I said earlier we have to show them that this is just what is happening now and we can and will get through it. They will become so much stronger from being part of our journey.

 Night night

 Tara xx

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Re: July 2020 chemo monthly starters

Hi Helen,

I can relate to you experience of changing diagnosis - that happened to me too and it does seem not uncommon. Very upsetting though, having to adjust to a new reality. The complexities of family life - supporting kids with their own lives and staying strong for them, makes things hard. Sometimes I don’t know what to worry about next, the choice is so vast! I do hope you’ve got support around you with that.

Glad to hear your son is looking forward to your new bald look! My daughter has kindly informed me that it won’t suit me! The character in the novel we’ve been reading shaves his hair of in solidarity with his mum. I suggested (in jest) that my daughter does that too, but she looked completely horrified!

Wishing you all courage for the next stage of your treatment - I hope it goes as smoothly as possible.

all best

Kate xx

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Re: July 2020 chemo monthly starters

Not at all, Tara, it’s useful to share thoughts about the schooling problem. I imagine it’s more challenging keeping primary age kids off school. I’m thinking we’ll keep going with home school initially but maybe keep some socially distanced walks going with friends. I should have had 2 or 3 sessions of chemo done before term starts, so hopefully I’ll be in a better position to decide then. Certainly adds another layer of complexity!

It sounds like you’re coping really well so far. I do hope that continues for you. Did you go for the cold cap?

Kate xx

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Re: July 2020 chemo monthly starters

Hello all, it’s good to meet you all although obviously I wish none of us were here! I’m Helen, I’m 51, I was diagnosed in mid Feb with a 30mm ductal carcinoma, Grade 2, HER2 negative, ER positive. Due to Covid and waiting for scans, there was a delay in my surgery, but I eventually had a mastectomy in April. Unfortunately the lump turned out to be 100mm and 1 of my lymph nodes was positive, so I had to go back in for an axillary node clearance in May, in total 4 out of 17 nodes removed were positive. So I am starting chemo  on 30th June, 3 cycles of EC and then 3 cycles of T, 3 weeks apart, followed by radiotherapy. I had a PICC line put in on Friday which isn’t too bad although I am reacting slightly to the plastic dressing, very itchy, so will need to ask for a different dressing when I go in on Tuesday.

I have 3 children, my eldest son is 19 and home from uni in London, my daughter is 17 and doing A levels (from home obviously) and my youngest son is 7, he has complex learning disabilities and behavioural issues, he can’t go back to school as he wouldn’t cope with the restrictions and could put me at risk. It has been very hard having him off school all this time while trying to recover from my ops.

I decided not to use the cold cap so have ordered a couple of turban/hats in funky patterns made of bamboo fabric as apparently it’s very soft and cool to wear. My son is very excited about the prospect of shaving my hair off so I will be bald like Daddy!

Anyway, thanks for reading all this, I wish you all the very best on this journey. I have found this forum an invaluable support over the last few months and am sure this group will be too.

Helen xxx

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Re: July 2020 chemo monthly starters

Hi Kate,

 I did not realise that you too are a teacher so hope you were not offended by my activity suggestions. It has been more difficult to home school my two for the first couple days after chemo as I felt like I had been travelling in a car whilst reading a book for a month. A little travel sick I guess, however I was not actually sick. I told my team I wanted to be as well as I could as I have my boys to take care of and they gave me some really good anti sickness meds. I try to get them to do 2 pieces a day, where as before surgery and chemo they were completing all work set.

 The head teacher at school made a really good point the other day. He said if we take the time the children have had off so far and work out the time they have left in education it equates to 1 week a school year. When you look at it like that it’s not too bad. Additionally, when I was at school children from different cultures would take time off to travel to the country they were born  in the school year, they seemed to do alright and not fall too far behind. Just do what you can.

 I am already due for my second round on Thursday. The past 3 weeks have gone so quickly. Hopefully they will for you and your family too.

 Lots of love and all the best

 Tara

xxx

 

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Re: July 2020 chemo monthly starters

Thanks, Tara, that’s a useful perspective on schools. In a way we’re all kind of used to isolating and home schooling, so maybe another few months of that won’t matter that much. My son, who’s 16, has coped very well and is pretty motivated, but my 12 year old struggles. I’ve been helping her a lot (I’m a secondary school teacher, at a different school to hers) but fear I’ll not have the energy once treatment is in full swing. I think we may have to play it by ear.

All the best

Kate x

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Re: July 2020 chemo monthly starters

Hi Kate H

 I have jumped in again from the June 2020 group. I am 36 and have had triple negative breast cancer. Had the 19mm lump removed in April and started chemo 11th June. Have my second one on Thursday.

 I have two children a little younger than than your children,  I wanted to let you know about what was happening with schooling. I work at the school my boys go to albeit in a different year group. On the 10th July our school are allowing children that have not yet been back those In Y2/Y3 and Y4/Y5 to go back for 4 days to help with transition. This would be really ideal for my youngest as he has autism and struggles with transition and change. My oncologist has said he can potentially go back but would have to take all of his clothes off at the door when he gets home and shower whilst I wait in a separate room, however my boss the head teacher has said he will not allow him back as he can’t promise the boys won’t get Covid or any other big and bring it back to me. As I am a member of his staff he has to think of my safety, which apparently is ultimately more important than my Childrens education. I am not sure what will happen in September yet as I don’t finish chemo to the end I am having six rounds of FEC-T. He said he will have to review the situation then. 

 It must be hard living in a flat, but what I have been doing with my boys for a change of scenery is putting my mask on and one in the and just Taking them for a little walk around the block by my house. This seems to satisfy them. Maybe you could walk up and down the street a couple of times. It’s not a lot but does make a difference. Also don’t know if you are aware but most websites used in school have been free access to parents during lockdown. There is one call Twinkl where you can download activities and crafts for your children to complete. I am not trying to pry but know how hard it can be to keep children occupied whilst we are going through treatment. In a way we have been lucky because most children have been in the same position but now things are being relaxed I sometimes feel guilty that they can’t be the same as others. We will get there this is just a small part of our lives which they are having to be part of, but remember we are making them stronger so that if they ever have to deal with an illness when older or their partners they will know that it is possible to get through it.

 Hope you all have a nice day.

 Lots of love

 Tara x

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Re: July 2020 chemo monthly starters

Hi all,

I’m Kate, I’m 49, and I’m due to start chemotherapy in a couple of weeks time - 8 sessions over 16 weeks. Have had to cancel all 50th birthday celebrations this summer!

I was diagnosed in late April with ER+ PR+ HER- invasive ducal cancer, plus an area of DCIS. Biopsy & MRI suggested it was stage 1, grade 2. Initially they thought I would need a lumpectomy + radiotherapy, then they thought the size of the DCIS was such that I’d need a mastectomy & sentinel nodes removed. I had that 3 weeks ago and have been healing pretty well. I thought I was over the worst...

But, unfortunately, my pathology results came back last week saying the cancer was actually stage 2 (only just - the tumour was 2.1mm), grade 3 and the cancer was partially in one node. They don’t seem to want to take any more nodes as the other 3 were clear, but I now I need chemotherapy too. I feel very stunned and scared - about the new diagnosis and the treatment that I wasn’t expecting.

Both my surgeon and oncologist has said my cancer is curable. I’m trying to hold onto that word and to mentally underline it when all the other horrible words crowd in. I have a fantastic team at my hospital and I just have to place myself in their expert hands and believe what they say.

I have 2 kids, 16 and 12. The 16-year-old has been amazing - very kind, lots of hugs, optimistic about the future. My youngest is struggling anyway and I think doesn’t know what to make of all my treatment. We have been reading a lovely book together which I would highly recommend for kids aged 10-12, called The Best Medicine by Christine Hamill - a Northern Irish writer who went through breast cancer treatment. (She also wrote a non-fiction book called B is for Breast Cancer about her experience which is about the only thing I’ve managed to read that has cheered me up and not freaked me out.) The Best Medicine is funny and moving and we’ve had a good laugh and cry together about the awfulness that is breast cancer,

Today’s top worry (the list is very long and they vie for the number 1 position) is about the kids going back to school (where I live, term has finished) and bringing back Covid or some other bug. Getting an infection during chemo sounds scarily serious. I’m unclear what shielding really means. I can’t imagine being socially distant from my family within our small flat. But my youngest is going stir crazy and really needs to get back to school. And I’ve already been self-isolating for 5 weeks and am dreading not being able to go for even a socially distanced walk with a friend, for support, laughter and a shoulder to cry on.

My oncologist says I can try the cold cap and I will give it a go. Fingers crossed - I don’t fancy losing my hair. The thread on cold caps was useful to read and quite positive. One tip I read was to invest in a silk pillow case and good quality dry shampoo. 

I’m very glad to have found this space and feel immediately less terrified, knowing I’m not alone. Thank you all for sharing your stories. Wishing you all strength for the trial ahead. May there be good days ahead.

Kate xx

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Re: July 2020 chemo monthly starters

Hi Steph, thank you so much for your reply and i’m sorry that you’re going through this too. 

I’ve had my CT scan result back this week and its all clear, thank god! So I'm feeling much better about everything and more positive about getting through chemo and radio. Had an appointment to check my wound & take the dressing off with my bc nurse on Thursday and seems i’ve got my wires crossed a bit. They like to allow roughly 4 weeks between day of surgery and start of chemo, so i’ll be starting a bit later than i thought, more towards end of July i think, but i’m still waiting to meet my oncologist so i’ll know a lot more then.

Still waiting on pathology result to see if margins are clear this time, so i’m hoping to hear something soon. 

Hope you and everyone else is doing ok - you’re right, we can be a great support to one another and get through this! Thank you for the kind words, 

 

Becci xx

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Re: July 2020 chemo monthly starters

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 dolly with hair

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 without hair with hat 

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Re: July 2020 chemo monthly starters

Hi Claudia,

My name is Tara. I have just hopped in from the June 2020 chemo thread. I too have children around your children’s age. 9 and 7. I had grade 3 triple negative 19mm lump removed in April. I say had because my margins and nodes were clear so the chemo to me is just to ensure it never comes back. Shi is right you can get a book from you bcn called ‘Mummy’s lump’. It explains things really well. Also I don’t know if you will loose your hair with your chemo but I contacted cancer hair care and they sent me a lovely knitted dolly for my younger child. It turns inside out to show what you look like now with hair and then what you will look like with no hair. My youngest has Aspergers a type of autism. The dolly has really helped him sequence the process in his mind. He is also a hoarder if dolls. This is part of his obsession. Don’t know if you have boys or girls but this really helped me too. There is so much support out there just let me know if there is anything you are worried about and I will try to help you.

 I am due my second round of chemo next week. My first was not nice but doable. As I have children I told my Oncologist I want to be as well as possible. I have to say drink plenty and ask for and take all anti sick meds as you are told and I am sure you too will be fine.

 Good luck and lots of love 💕  Tara xxx

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Re: July 2020 chemo monthly starters

Hi Claudia, I think there is a book if you want to tell your children with the help of that, I think others have used it. Not sure if your bcn has already told you about it? 💕💕Shi xx

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Re: July 2020 chemo monthly starters

Hi I was diagnosed on 30thmay with invasive duct cancer which is roughly 39mm. Mri scan showed my lymph nodes to be fine and I will having chemo in July with a lumpectomy once chemo is completed. Back to front from everyone else but it's for the greater good. I'm a bit apprehensive about it all. I now have to tell my kids which I am dreading as they are 8 & 11

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Re: July 2020 chemo monthly starters

Hi all, I’ve just discovered this awesome app which is specifically to help with managing medication, monitoring side effects and how you’re feeling during treatment.  I put everything on a spreadsheet when I was going through treatment but this creates graphs for you and you can share how you’re doing with friends and family.  I would have loved it, it’s super geeky.  It’s on Apple only at present

http://www.careology.health/ 

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Re: July 2020 chemo monthly starters

Hi Becci

Sorry to hear everything you're going through.. it's so tough isn't it.  I know exactly how it feels to wait for results, that was the worst time for me.. I was in shock with the diagnosis and literally petrified with the scans but it does get much easier after you have your results and a treatment plan in place.  Now I have my plan in place I feel a much less stressed.  I've got my masectamy on the 3rd and then probably chemo and radiotherapy.  6 months in total of treatment which seems a long time doesn't it but I found out on 13th May and that was well over a month ago so time will go quickly.   Once you have all your results back and a plan in place you will feel better.  Just remember these days the science and treatment is amazing and we will get through this.  We can all support each other 🙂  Lots of people have said to me dont think about the whole big picture just literally take it each day as it's much more manageable. 

As for the cold cap I assumed it was an option but I've not asked my hospital. However I've decided not to bother with it as I dont want to be in hospital longer than I need to and also I've not had a hair cut since Feb(!) so it's not looking it's best in any event ha ha!  I think with hair loss it can make people look ill but I've told myself the hair loss is simply the chemo which is making me better.  If you see what I mean - its not the cancer making us lose our hair.  I think you're absolutely right there are some gorgeous head scarves etc out there so between that, wigs and summer hats we will be fine 🙂   Apparently hair grows back thicker and more healthy looking after chemo! No idea why that is but this time next year we'll have gorgeous hair! 

I understand how you feel about being alone in all this.  Friends and family can be supportive but they can't really understand how we feel so it's lovely that we can chat to each other.  

We'll come out the other side together 🙂  

Steph xx