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July 2020 chemo monthly starters

Nancy Blackett
Member

Re: July 2020 chemo monthly starters

Feeling better this morning and when I read the side effects of the Emend antiemetic that describes how I felt which is good because I have finished that one. Today my wonderful husband gave me the first Filigrastim injection of 7 and so far so good. I am going to walk up to my allotment later with the compost bin. Today’s challenge! It’s all a bit wearing but I am okay.

Who else had treatment this week? I am sorry your veins were troublesome Amy I am so glad now I have the PICC it is no problem

NB

Shi
Community Champion
Community Champion

Re: July 2020 chemo monthly starters

I’ve asked the mods to help you, hopefully you will get post on here from them soon, hope this helps 💕💕Shi xx

amyc
Member

Re: July 2020 chemo monthly starters

Hi Mango

The way you describe viewing posts in the forum is the way I see it too... it’s annoying. I was wondering if there was a way to reorder it so the newest post was at the bottom but I haven’t found out how.

Glad you had a better session yesterday - how have you been feeling in between the sessions? 

I had my second yesterday and was there six hours which felt a long time for a 2.5 hour treatment - there were lots of issues finding a vein. All pretty grim and in the end someone came with an ultrasound to do it. Picc is going in on Wednesday immediately before my next treatment. So hopefully that will make things easier from now on.

As I have to go weekly I’m trying to work out when I will start to relax in to the regime but with the picc next week and then an oncology appt straight afterwards the following week, I think it could be a while. Would be nice just to have an in-and-out treatment. 

I am 39 with a 21 month old so we’re not too different. Hopefully your baby is a nice distraction but it must be hard work too. Do you have a partner around to help out? I am so glad mine is still working at home because of the virus.

How are you feeling today Nancy? 

Hope everyone else is doing ok. 

Amy x 

MangoMacaque
Member

Re: July 2020 chemo monthly starters

Hi all

I started chemo on 1st July and just had my second session yesterday. It was better than the fist because I had a reaction that time. Yesterday was uneventful. It was also a lot shorter, partly because of no reaction but also because they didn't have to do the whole induction. Another reason is that my Doctor saw me the day before instead of yesterday, when he was on leave, so I was able to skip that part. All in all it was 6 hours, instead of the 13 hours that my first session took. 

I haven't posted until now because I can't actually figure out how this works (is this chemo brain??) When I open the forum I expected to see the first post at the top with the replies nested beneath it, but what I actually see is lots of replies to different messages all in a flat layout and I have to scroll right down and hunt to find the original messages. Is that what everyone gets or am I doing something wrong? 

I'm 35 with a 9 month old baby and still adjusting to the news of my diagnosis, I imagine we all are!

Looking forward to interacting with you all, once I can get my head around the layout!

MM

Nancy Blackett
Member

Re: July 2020 chemo monthly starters

Oddly all sensory input hurts today. Sound light taste and smell all jar. I am mainly curled up with my eyes shut. But surfaced for coffee and a brownie so things are looking up. Looking forward to some light reading music and films soon though. And a lovely lady rang from Charity Hair Care. One down five to go!

amyc
Member

Re: July 2020 chemo monthly starters

Well done NB! Look after yourself - I can recommend Mrs America on iplayer if you’re looking for something to watch. 


Nancy Blackett
Member

Re: July 2020 chemo monthly starters

I’m home from my first FEC which was a surprise. In and out in just over an hour. I feel like I have a nasty hangover with fuzzy head and queasy. But all straightforward. Now to lie low for a few days

amyc
Member

Re: July 2020 chemo monthly starters

Thank you both for the messages about the PICC, that makes me feel better 😊

Hope you get on ok tomorrow Helen c 

Helen111
Member

Re: July 2020 chemo monthly starters

Hi Amy, I just wanted to reassure you about the picc line. I had mine put in just before my first round of EC, it was fairly straightforward to have done - the radiographer looks at your veins using ultrasound, then a fine tube is inserted under local anaesthetic and then they x-ray you to check it is in the right place. It didn’t hurt at all, I just had some bruising afterwards but my veins were a bit tricky to access apparently. The picc line is on the inside of the upper arm and covered with a dressing so doesn’t get in the way. It does need flushing every 7-10 days which is just a small amount of Saline fluid squirted in. 

Having the line makes it much easier every time they need to take blood etc. and my chemo apparently makes your veins collapse (lovely!) so cannulas would be hard to insert.  I bought myself a waterproof cover so that I could shower but some hospitals provide these I think. Mine was about £18 on Amazon and works brilliantly, it is stretchy rubber like a swimming hat for the arm! I can send you details if you want.

I had my blood test this morn and back in for my second chemo tomorrow. I hope all goes smoothly for you on Wednesday and that you are having a bit of relaxation in the sun this afternoon. 

Very best wishes, Helen xxx

 

Nancy Blackett
Member

Re: July 2020 chemo monthly starters

Amy I had my PICC line inserted this morning and it was painless and easy. They gave me a waterproof cover so I can shower and I cycled home afterwards. Honestly it’s nothing to fear and I was pretty scared beforehand.

 

amyc
Member

Re: July 2020 chemo monthly starters

Hi Jencat and thanks for your message. Sorry to hear that it has returned for you, that must be difficult. I’m so pleased that you have felt a response to treatment - that’s the thing I’m so desperate for at the moment. My lump is quite big and my breast is visibly swollen with it and it’s such a constant reminder. I’m so hoping that this treatment is going to shrink it down but there’s nothing to do but wait and see I guess. 

My first session last week was ok... I was very nervy when I first got there but the nurse was brilliant. I managed to read while having a cup of tea for about an hour of it, which I was amazed by. Cold cap was ok too after the first shock of it. I think they want to put a PICC line in which sounds a bit grim but I’m not very good with needles so hopefully it will make things easier. I had to nip over to A&E the day after my treatment because both my arms swelled up with a rash but they checked me out and sent me home with antihistamines so nothing too drastic. Otherwise side effects were minimal, just tiredness and a horrible taste in my mouth really. 

How is everyone else doing? Any nice plans this week? My little boy is at his childminder today so I’m going to try and catch up with some life admin type things and maybe do some reading in the garden. Then it’s blood test tomorrow and back in for chemo on weds. 

Nancy Blackett
Member

Re: July 2020 chemo monthly starters

Claudia I will allow you that as your brain is scrambled! Anyway my real name isn't Nancy Blackett but there is already someone on this thread with my name so I took that name as she is a role model for  me. 

Jencat Hello and sorry you have been having such a tough time. It is kind of you to help others. 

 

 

Jencat
Member

Re: July 2020 chemo monthly starters

Hi Amy,

I'm so sorry to read about your diagnosis, I am in a similar situation to you. I was diagnosed with bc in June'17, Stage 2 and TN and had chemo the same time as the lovely Shi. Unfortunately my bc returned at the end of last year and I've now been diagnosed with SBC in my sternum (a 'nibble' I was told!) and whilst on Carboplatin, some spots showed up on my lungs. My onc suggested I went on weekly Paclitaxel as I'd responded well to Docitaxel in 2018. I'm having it 3 weeks on, 1 off. I'm finding the side effects ok, but I do find I'm tired and a bit weak for a few days afterwards, probably not helped by the steroids you have for a few days afterwards and that I'm nearly 61! It's also a bit of a pain having to go to the hospital a couple of times a week for the chemo and the blood test a day or two beforehand.

On a positive note though, so far I've had a good response from Paclitaxel. My breast lump is external and I've had problems and a lot of pain with it. After only 2 rounds (2/3 of a cycle) I could see and feel a difference in my lump and after 2 cycles, my onc was thrilled when she saw how much my lump had reduced. Infact she has now doubled the cycles so that I will be having 6 instead of 3. My pain has also significantly reduced-I only need paracetamol a couple of times a day now, previously my SBC had suggested I contacted the hospice for pain relief advice. 

Hope it all goes well for you, Jencat x

Claudia3609
Member

Re: July 2020 chemo monthly starters

So sorry I just realised that I called you fiona 😬

Claudia3609
Member

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 

Nancy Blackett
Member

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. 

Nancy Blackett
Member

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! 

ttyler
Community Champion

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

ttyler
Community Champion

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

 

Nancy Blackett
Member

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)

Heather77
Member

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

Heather77
Member

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

Claudia3609
Member

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

Shi
Community Champion
Community Champion

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

ttyler
Community Champion

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

amyc
Member

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 

 

Shi
Community Champion
Community Champion

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

ttyler
Community Champion

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 💕 

KateH
Member

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

 

amyc
Member

Re: July 2020 chemo monthly starters

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

amyc
Member

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 😞 

Claudia3609
Member

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

Claudia3609
Member

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

ttyler
Community Champion

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

Helen111
Member

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

ttyler
Community Champion

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

Claudia3609
Member

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

ttyler
Community Champion

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

Claudia3609
Member

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

ttyler
Community Champion

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

Claudia3609
Member

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 

Heather77
Member

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

 

 

KateH
Member

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

 

Heather77
Member

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

ttyler
Community Champion

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

ttyler
Community Champion

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

Helen111
Member

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

Helen111
Member

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

ttyler
Community Champion

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

KateH
Member

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