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October 2019 chemo starters

Emzlew
Member

Re: October 2019 chemo starters

Hi Claire

Ok, so it's not me over analysing then?!  My mouth is the same today so I guess it is.. 

 

It is hard work the twins at the moment I think because I'm just so tired.  I've just got them into pre school just for two mornings.  I thought it might help when I'm having treatment but this morning was awful.  My little man didn't want to go.  I know he will be fine but it broke my heart.  All 4 of my children have been out of sorts this weekend and of course it's to do with me.  That's the hardest part is knowing it's affecting them.  We need to do this.  We have to do this so I'm trying to be as normal as I can be.  My wife worked a late last night so my sister came over and helped me get them their tea and ready for bed which was a huge help!  My wife is back on earlies tomorrow so I have to be on form tomorrow to get them all out the door by 8.30!  It's what us amazing women do, we carry on regardless!!

I am listening to my body though.  If I need to have a lay down I will, the washing up can wait!!  My babies need me!! 

How are you doing Claire? When is your next treatment? 

Emma x

 

Oots
Member

Re: October 2019 chemo starters

Hi Emzlew

 

I am from the April 19 group and I had four rounds of TC. It had very strange effects on my tongue and sense of taste within hours on each infusion. It was like a strong tingling on the tongue that never stopped for a couple of weeks. I could not taste very many things such as apples and other fruits, sugar, salt etc. I loved tomato ketchup (on toast) and curries. It did fix itself after ca 2 weeks and I could enjoy food again usually for a week before the next chemo. I finished chemo in May and my sense of taste is back to normal. Sometimes I imagine I can feel the tingling again. Not sure that it’s real. 

 

I made a list of my side effects by day as a reference what to expect for the next rounds. To some that might feel a bit unnecessary but it helped me. I found that very similar things happened on the same days post chemo and I was ready for it the second time round. 

 

Good luck everybody. I know you are all going through a tough time right now but there is a point in the foreseeable future when you will feel better. That thought has helped me a lot. 

 

Oots

 

ClaireL
Member

Re: October 2019 chemo starters

Emzlew, 

 

I have a friend who lost her taste and had her tongue effected the same way almost instantly after her first dose. She just finished her treatment recently but I'm not sure what her medication was now. 

How are you finding dealing with the twins? My boy is 2.5years old and I want to be as normal as possible with him whilst this is going on. 

 

Claire x

Emzlew
Member

Re: October 2019 chemo starters

My next treatment is booked for the 25th all being well with bloods. 

I have a PICC line in.  It doesn't hurt having it done and it's not painful at all now.  

I do however have 3 year old twins who like to climb on me a lot so it makes me a little nervous.  That's mainly my reason for wanting a port.  Not the only reason I might add.. 

I believe I'm just waiting for them to send me a date for that now?! 

Have been feeling much brighter today.  Started my injections tonight.  My wife is type 1 diabetic so I can't really complain about injecting myself so that made it easier to do it!  Feeling nervous everyday day about any other side effects that might show up but also positive I will power through!! 

Ooh, my tongue feels funny?!  A bit like I've eaten some really strong salt and vinegar crisps and it's stripped my tongue of much feeling..?  Would that start already or is it me analysing too much??  🙈

 

aj72
Member

Re: October 2019 chemo starters

Hi Jasmine 

 

Glad to best you have a support network around your family. 

 

I have my chemo through a syringe via cannula so can’t comment on a ‘line’ but I do believe it is a PICC line.  I saw some patients at my unit with lines fitted and they didn’t appear to be in any discomfort nor did it appear be a nuisance. 👍

 

keep us posted !! 💋

aj72
Member

Re: October 2019 chemo starters

I’m back on 21st as long as bloods are ok 🤞🏻

 

A

💋

jasmine1897
Member

Re: October 2019 chemo starters

Thank you for your reply aj72. I have recommended her this forum, I believe she is on the Macmillan one at the mo too. 
We have told my sisters school and her teacher has spoken to her as she is actually going through the same (her mum having breast cancer) so she has great support with the pastoral team too. 
We are having a look around on the 8th so will find out more - they said she is having a ‘line’ fitted - would this be a PICC line? Will update after tues x

 

thank you for the birthday wishes x

Rorymaisie
Member

Re: October 2019 chemo starters

Hi I’m starting on Friday.. slightly nervous how I’m going to feel after the sessions re nausea 😤

ClaireL
Member

Re: October 2019 chemo starters

Awesome, thank you x

When is everyone next up for treatment? 

aj72
Member

Re: October 2019 chemo starters

Hi Claire

 

depending on how long your session is you may want to take some lunch or snacks like crackers or biscuits and a drink.  I’ve also been told about sugar free sweets like lemon sherbets or mints to zing your mouth up a little.  I was offered tea and coffee in hospital but it was a bit grim so might take some fruity tea bags on my next appointment 👍

ClaireL
Member

Re: October 2019 chemo starters

Thanks Amanda,

 

Does anyone have any tips for what to take with me tomorrow? I've got my travel sickness bands, headband for the cold cap,a my phone and a book. The rooms in elstree are all single rooms so I won't get to chat much to others I don't think. My husband is coming with me too. 

 

Thanks!

mini mad
Member

Re: October 2019 chemo starters

Also take a look at PICC lines.  Best decision i made for having my chemo and bloods taken....no sore hands...no cannulas 👍👍👍

mini mad
Member

Re: October 2019 chemo starters

My hospital doesnt fit portacaths so i had a PICC line put in....  so easy for chemo, bloods, meds... no more cannulas 👍👍👍    Good luck 💖💖

aj72
Member

Re: October 2019 chemo starters

Let us know how you get on tomorrow Claire 👊🏻

 

Amanda 💋

Purpletrunks
Member

Re: October 2019 chemo starters

Havent heard about ports.. will have to investigate 

ClaireL
Member

Re: October 2019 chemo starters

I get one fitted tomorrow. I've only heard good things about having it so that's a positive. Good luck with getting it fitted. 

It's d day for me tomorrow. 

Hope everyone is doing better today. X

Emzlew
Member

Re: October 2019 chemo starters


@kathyx wrote:

@Shi

It's frequently only through using Google that we find out about new developments and breakthroughs, particularly if you're not being treated at one of the big teaching hospitals in the UK. How many people have even heard of having a port installed for chemo rather than risking it wrecking your veins? (And that's just one example.)

 


I'm looking into having a port a cath.  A neighbour recommended it to me so I'm just waiting to hear back.. 

 

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Kathrynx, no offence meant by saying keep off dr google, we all have done it and yes it is a way to find things out like I have done re the m d Anderson stuff. Sorry I just didn’t want anyone 😳😳😳with out of date info. Everyone can google away to their hearts content, it’s everyones individual journey and you all do what’s right for you, again sorry and no offence meant to anyone 💕💕Shi xx

kathyx
Member

Re: October 2019 chemo starters

@Shi

It's frequently only through using Google that we find out about new developments and breakthroughs, particularly if you're not being treated at one of the big teaching hospitals in the UK. How many people have even heard of having a port installed for chemo rather than risking it wrecking your veins? (And that's just one example.)

 

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Had breast cancer at 44 sorry predictive text 🙄

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Just also wanted to share with you my gran has breast cancer aged 44 and she is now going to be 95 this week ❤️So good bit of positive for you all to focus on 😁❤️💕💕Shi xx

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

❤️Keep off dr google, remember treatments and breakthroughs are happening all the time, why just 30 odd years ago aids was incurable, now there are pills that keep it in check. Get those positive pants pulled up and get through the chemo 🥊🥊🥊🥊it’s extra dr on inside giving anything a good battering 🥊🥊🥊 if you do get google fingers head to m d Anderson in the states, they are always making breakthroughs over there and so is cancer research here in the UK, they are unlocking codes and doing new trials when they can get funding and massive thank you to everyone on trials that are the very important part of the research ❤️❤️of your body tells you to rest during chemo then rest, just keep vigilant on se’s and always ring your units 😘💕💕Shi xx

aj72
Member

Re: October 2019 chemo starters


@jasmine1897 wrote:

Hi everyone,

I’ve just read through this thread and it is incredibly positive.

I’m actually here on behalf of my mum, 45, who was diagnosed with IDC grade 3 with lymph node involvement (including ones on side of neck?) On the 20th sept. She is ER-PR- and HER2+. 

she has been given a date for chemo - 14th Oct. Then mastectomy & radiotherapy after. She has had a CT scan Thursday to check for further spread. She has been in a lot of pain and unfortunately can’t move her shoulder/arm on the affected side so she’s unable to work, which as you know when you’re not busy your mind runs wild!

 

She has 4 children youngest being 13 (I’m 24 on Monday!) 

 

Thank you for everyone who has given tips for starting, and I hope for the best for everyone going through this xxx 


Hi Jasmine

 

From a ‘mum’s’ perspective try to keep life as normal as possible.  Since my diagnosis our house has carried on with the same smiles, hugs, sarcasm, wit and arguments. Yes I have an illness and need treatment but it’s not going to beat us.

 

Encourage younger children to talk about how they feel even if it’s just for them to rant at you. Let them listen to you so they know that what they maybe feeling is ok because their big sister feels it too. Please also make their schools/colleges aware as their mood, behaviour and concentration may change and the establishments need to understand why so they can help. 

 

Take at look at these websites:

http://www.riprap.org.uk/ 

 

https://www.maggiescentres.org/cancerlinks/cancer-types/paediatric-childrens-cancers/teenagersolder-...

 

I also called to the Macmillan helpline to chat about my kids (18 and 16) and they were lovely and very helpful.  

 

Don’t let your mum’s illness be a black cloud in your house let it be something that brings you all closer together. 

 

Please ask your mum to join the forum so she can either carry on her journey with us or simply read the comments to seek reassurance. 

 

We’ll be thinking of you all in the 14th but in the meantime have a very Happy Birthday Jasmine and celebrate !!!!  🎊🎊

 

Amanda 💋

 

Purpletrunks
Member

Re: October 2019 chemo starters

Lots of love to you and your mum jasmine1897 💜

Purpletrunks
Member

Re: October 2019 chemo starters

Hey Claire 

The dark places our brains now know eh? I could send lots of stuff about focussing on the now, being strong, definitely not googling. But, actually..  I just want to say that I really hear your fears. ❤❤❤❤❤ I'm sure we all have them too in different ways on different days. This is sooo bloody hard. Some days, like today, I really havent got this at all. 

 

I spent the day in a&e today. Tight chest, called chemo unit, sent in via a&e. A blood marker for pulmonary embolism was up so I had a day of scans. When the doctor told me it wasnt an embolism I realised I was actually only worried whether it was the cancer spread. He said is wasnt. I sobbed like a baby and realised that's the underlying fear always now isn't it. Once you have been told that everything isn't ok, it seems so easy and likely that we will be told that again. And managing that underlying fear is sooo exhausting. Especially when chemo'd up!!

 

But one thing I know for sure, there will be brighter days than this one. We will get through chemo and the sun will shine on our bodies and fill them up with life once more. 

 

For today though, its greasy sickness, cloyed head, wired steroid brain no sleep, and bored endless scrolling through innocuous crochet pinterest to avoid dark thoughts and dr google. Come on tomorrow....

 

jasmine1897
Member

Re: October 2019 chemo starters

Hi everyone,

I’ve just read through this thread and it is incredibly positive.

I’m actually here on behalf of my mum, 45, who was diagnosed with IDC grade 3 with lymph node involvement (including ones on side of neck?) On the 20th sept. She is ER-PR- and HER2+. 

she has been given a date for chemo - 14th Oct. Then mastectomy & radiotherapy after. She has had a CT scan Thursday to check for further spread. She has been in a lot of pain and unfortunately can’t move her shoulder/arm on the affected side so she’s unable to work, which as you know when you’re not busy your mind runs wild!

 

She has 4 children youngest being 13 (I’m 24 on Monday!) 

 

Thank you for everyone who has given tips for starting, and I hope for the best for everyone going through this xxx 

ClaireL
Member

Re: October 2019 chemo starters

Hope you feel a bit perkier soon Jules. 

 

I'm having a crisis if confidence tonight. Not knowing how I will feel come Monday and because I started reading the book that was recommended 'surviving triple negative breast cancer' and it said 'if it comes back it's incurable'. I'd never heard that so I Dr googled and now I feel like crap. Nothing I read actually confirmed that but everything is so bloody uncertain. 

 

Anyways, I'm so glad you guys are being so strong. Gives hope to the rest of us at these kinds of times. 

Wish I could be the strong woman I always was. 

 

You got this ❤️

julesintheweald
Member

Re: October 2019 chemo starters

Hi Lou,

 

I hope the sickness is improving.  

 

Im just shattered feeling very tired.  Finished the steroids this morning and now giving myself daily injections of lymphocytes....  

 

I’m hoping the tiredness will improve but if not going just going to have to go with it.... 

 

we can do this 👊🏻

 

Xx

Purpletrunks
Member

Re: October 2019 chemo starters

That sounds similar to me.. I felt sick the next day too but its easing today. 

 

 

Emzlew
Member

Re: October 2019 chemo starters

Hi ClaireL

All went well in the hospital.  Tried the cold cap but lasted 10 mins.  I'm at one with going bald!! 

Felt fine in the afternoon, just a little wishy washy.  Then by 5pm I felt incredibly sick.  I was sick the once and felt a bit better after.  I'm taking my anti sickness meds and steroids today.  I feel a little better, just poorly but couldn't explain in what way?! 

I'm nervous about what else is going to come over the next week or so but I'm hoping it will be fine and I will breeze through..!! 

1 of 7 done!!

 

We've got this ladies!! 💪🥊 xxx

 

ClaireL
Member

Re: October 2019 chemo starters

How did your first session go today emzlew? 

 

Just in case you weren't aware....charge exemption prescription form  to help us with the multitude of stuff we need in the months to come. 

https://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/help-...

 

 

 

mini mad
Member

Re: October 2019 chemo starters

I had horrendous indigestion and my unit told me to take Lansoprazole.

i did and was under control so quickly.  xx

aj72
Member

Re: October 2019 chemo starters

 So not fancying the prospect of indigestion all weekend I rang my unit who advised good old Gaviscon !!!  Not had this since drinking it by the litre at the end of two pregnancies many moons ago !!! 🤣🤣. From memory it did ok back then so 🤞🏻 It can still work it’s magic !!! 

 

Let’s hope we all have a comfortable weekend 💋💋 

aj72
Member

Re: October 2019 chemo starters

Lou 

 

I'm glad you’ve called and hope you experience relief quickly.  Stay in touch and let us know how you get on  💋💋

 

Amanda 

Purpletrunks
Member

Re: October 2019 chemo starters

Thanks Aj72

 

I called them this morning and they have recommended more anti sickness. I just keep thinking it will have to pass at some point.

 

Indigestion is horrid! I really hope you can get some relief xx

aj72
Member

Re: October 2019 chemo starters

Hey Lou!

 

Please call your unit if you haven’t already to see what alternative meds they can offer. Please don’t suffer in silence 😔

 

I still feel ok other than indigestion. I may call my unit to see what they recommend.  It’s more an annoyance than anything ! 

 

Chins up ladies.   We will get through this. Stay strong and positive 💋💋

Purpletrunks
Member

Re: October 2019 chemo starters

Morning,

 

Glad to hear it's not treating you too bad Julesintheweald.

 

I'm struggling alot with nausea and sickness..  was awake all night last night. Just hoping it passes soon.

 

Lou

julesintheweald
Member

Re: October 2019 chemo starters

How are you doing Lou ?  I started Tuesday and Wednesday ....  suffering a bit with back ache but that’s the type of chemo I am on.  Wasn’t as bad as I expected and no sickness !

 

hope u r ok x

 

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Claire ❤️ You will all soon get into a routine with it and you’ll all be rowing that boat together 💪💪sometimes someone will nip off for a coffee break and a bun then jump back on a rowing seat 💪💪💪 keep focused the Hawaiian beech is on the horizon you just keep paddling in the boat and hit any sharks with your oars that have any other ideas of getting any of you out the boat 👭👭👭stick together 👍👍💕💕Shi xx

ClaireL
Member

Re: October 2019 chemo starters

Hey,

How is everyone doing? Purpletrunks, do you feel any better today? 

I start my treatment on Mon and am having my port put in the same day. I spent the last few days gathering some essential items, picking out a wig and booking an appointment to have some eyebrows drawn on! Things I never expected to do. 

Trying to be as normal as possible whilst feeling so far from normal it's mad. 

My thoughts are all over the place and I guess it's mostly the unknown. 

Hope everyone is doing ok. 

 

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Purple trunks ❤️👭please ring your unit to check all ok, chemo can make everyone have different se’s So alway better to keep safe and ring and check 😘💕💕Shi xx

Purpletrunks
Member

Re: October 2019 chemo starters

Hey,

 

So I'm 24 hours post. Had an awful evening... nausea built and built alongside a headache and then I was very violently sick. But it did give me some relief and I managed to sleep. 

 

I just started my stetroids this morning. Really hoping they will give me a boost. Anxiety is definitely playing a part but I'm fairly sure it's not psychosomatic. I was sure I'd be fine until 3-4 days post, and generally I'm not a sicky person. 

 

I have been wearing my anti sickness bands. I took them off last night to get ready for be and that's when my sickness got really bad.. dont know if it's a coincidence.

 

Anyone else get a headache? I think it must be the anti sickness meds. 

 

 

Mai7
Community Champion

Re: October 2019 chemo starters

Aj72, you’re straight in on the sickness med gold standard then!  Anxiety may be at play as having chemo it’s quite a big thing psychologically to start with.

aj72
Member

Re: October 2019 chemo starters

Thanks Mai

 

I've been given Emend which ends today.  I’ve also now ‘when needed’ sickness meds to take so I’ll see how tomorrow goes 🤞🏻  Not sure whether it’s psychological too. I know it’s a side effect so is my brain telling me I should have it  🤷‍♀️ Who knows ? 

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

The Emma hannigan books were inspirational too ❤️ Amazing brilliant lady ❤️ 💕💕Shi xx

Mai7
Community Champion

Re: October 2019 chemo starters

Aj72, if your anti sickness meds aren’t working effectively don’t hesitate to ask for an alternative.  The top one is Emend, apparently, but it’s more expensive so you have to ask for it.  I didn’t need it as the one I was given was enough.  Hope the queasiness wears off soon.  I found ginger tea and gingernut biscuits helped.

aj72
Member

Re: October 2019 chemo starters

Hey Lou 👋 

 

How’s your day been so far?  I hope it all went well. 

 

I’m on day 3 and other than feeling little waves of queasiness (not all the time) I’m ok so far. I’ve invested in travel sickness bands to see if they help. Last day of steroids tomorrow so the ‘wall’ may be looming 😀

 

Keep us posted as to how you are doing 💋💋

KathCurtis
Member

Re: October 2019 chemo starters

Hopefully I will be starting this Friday. Had a lung infection that needed antibiotics first and getting that checked tomorrow. Hoping (and dreading) I will be good to go! 

Purpletrunks
Member

Re: October 2019 chemo starters

I'm jumping in the boat today 😳

 

Anyone read the book Room? She coins the phrase 'scave'... scared but brave. Seems about right.

 

 

Shi
Community Champion
Community Champion

Re: October 2019 chemo starters

Sorr get your oar ready, sorry it changed to par, it’s not the waltons 😁xx