January chemo starters ?

[Dealdoh]

Ho hum still awake.

Ouch - toothache is horrible at the best of times, sorry to hear you are suffering with thi on top of yr chemo.

[Aliand]

I'm awake too, but because of the most horrendous toothache. Saw the dentist today on antibiotics for 5 days and if bloods ok will drill and fill with antiseptic to keep me going until after chemo for the rest of the treatment. Argh this is far worse than my first chemo. Hope I can sleep soon.

[Dealdoh]

I’m up tomorrow also and strangely enough I can’t sleep!  My neck incision is quite swollen and I’m hoping it’s not going to delay anything.  

I dont really understand why they do not offer everyone a pic/Hickman or port at the outset as surely it is far better than beating up the veins each time.

Good luck tomorrow Rosie and hugs to those who have already started and have one under their belt.

[Tracy12059]

Good luck tomorrow RosieH. I had my first one today and I’m so glad to report that it wasn’t nowhere near as bad as I’d conjured up in my mind! I feel great at the moment but fully expect some side effects to kick in pretty soon. So far I’ve managed to drink 3 litres of water today and been on the loo loads which is good as I’m now starting to get rid of the drugs! I’ve been given mountains of anti sickness drugs which is music to my ears as I am terrible at being sick. The only down side is I feel permanently starving as they are a steroid! I had docetaxel today of which I am now getting 4 sessions of followed by 4 FEC.
FEC - definitely ask for a line or port - you can’t keep going through that. I had a port fitted on Monday and it took them five attempts to cannulate me to enable them to sedate me. The pain was horrible and it took ages of sitting with my hands in hot water. As mentioned above I had my first treatment today through the port and what an absolute breeze! They took my bloods through the port and then gave me the chemo - the whole first process took just over 3 hours and was completey painless. Hope it happens for you xxx

[RosieH]

Well done Fec..1 down! I’m up tomorrow x

[Aliand]

FEC definately ask about a PICC line, my oncologist said I didnt need one because I had good veins but when I discussed it with the nurses on the chemo unit they said if it was them they'd have one. Ring your link nurse and tell her you'd like to talk to someone about it. 

I'm having one put in before my second treatment, it will dangle about a bit but just makes treatment easier and I'm mindful of the fact that with blood frequent tests, surgery to come and possibly more scans etc that I want to stop my veins becoming non exsistent - why suffer. Though it is another proceedure to go through and there will be weekly checks of the line.

My head felt weird for about 5-6 days, I remeber going out to do the school run and thinking that I wasnt really coping with driving the car as well as usual so I was extra careful. The next day it just lifted like a fog. I'm day 9 today and feel pretty much normal. So be assured it will lift, you might just have to be patient with it a bit.

Well done for reading the book, my kids are 12, 15, 18 so I just told them but its suprising how they just accept what you say and get on with it.

You are doing great, 1 treatment down already, you are now on your way to a cure xxx

[Starfire9]

Thanks Jamesy46. Yes a good cry always helps. Xx

[Jamesy46]

Well done Fec , I think getting the first one over is probably gonna be the hardest , have they said any thing about a picc or a Hickman line because of your veins ? Not fair for you to have the pains every time , having the chemo is bad enough xx
And as for crying I cried like a baby today and do you know what I thin k we deserve a good cry xxxx

[Starfire9]

Kirstyp86 and Aliand,

Hi, first infusion complete yesterday. ( Tax followed by Carboplatin) No major reaction just felt drunk and had a horrible time with the cannula causing pain in my veins as I have tiny ones apparently. Cried twice; first time when they did the drugs check and asked me my date of birth and proceeded to put on the protective rubber gloves. The second time was due to my vein causing so much pain when they flushed it through, nearly passed out. Afterwards I went home and ate and drank loads and bed as normal.

This morning I woke up all hot and bothered looking like I’d been asleep on a beach all day without sunscreen. Temperature normal but I am forgetful and my brain feels foggy and can’t be bothered with using it much. I think so far the brain fog is my most personal worrying symptom as it feels like a cloud hanging over me. I hope it passes.

Just read Mummy’s lump to my five year old daughter and managed to keep it together.

How are you feeling today Kirsty? X

Thank you for thinking about me Aliand X

[Aliand]

Well done Jamesy, another hurdle done. Have a cry if you need to its healthy and part of how we cope as human bengs. 

Time to online shop for a little treat I think x

[Jamesy46]

Hickman all in. Sitting crying and feeling sorry for myself , no pain at all , just a weird tugging feeling , cup of coffee and I’m good to go x
Got Line care tomorrow to show me how to care for it xx
Karen

[Jamesy46]

I love the honey in hot water and I think it’s kept these colds at bay that are going around , I’m having flu jab on Friday too so perhaps that will help
Hickman line being put in tomorrow , I’m quite nervous about it as I’ll be awake , just something else to tick off list , had never had any surgery before my two WLE ‘s ,
Big pants on x

[Karebear]

I add a spoonful to my porridge or you can add it to warm water just try different ways

[Aliand]

How much do you have to take, I hate honey ?

[Karebear]

I've started using the munuka honey and came across this
MARKS & SPENCER OWN LABEL

Marks & Spencer, £14.75 (340g)

WHAT THE TEST FOUND: M&S has come up trumps. A score of 347.9mg/kg of MGO was the highest in our investigation.

Leptosperin levels were the second highest, at 446mg/kg, showing it had been gathered by bees feasting exclusively on manuka nectar.

WOULD IT QUALIFY FOR A UMF KITEMARK? Yes.

[Aliand]

FEC hope you got on ok. I’ve been thinking about you. X

[Kirstyp86]

FEC.... my first chemo was today I had the same as you , I no we are all different as I keep getting told but honestly I came home and was worried because I felt ‘too’ fine lol, the procedure itself was fine I felt like I was sat having bloods didn’t feel different just myself the whole day . My advice... take the anti sickness when they tel u and keep on top of it I woke an hour ago feeling bit ‘iffy’ but took one and feel loads better xxxx honestly try not to worry I was you last night so I no how u feel xxx massive hugs xxx let us no how u go cc

RosieH and Aliand thank u that’s helped put my mind at ease thank goodness for this thread xxxx

[Dealdoh]

Great post aliand x

[RosieH]

Good words Aliand...

Fec I will be thinking about you tomorrow...we should if all goes to plan start and finish about the same time!

i mean in months and weeks not hours and minutes 🙃.  Xx

[RosieH]

Hi Kirsty

im so so sorry you are having this extra worry...I have a blip on my liver that showed up on my CT and the onco says it maybe something and nothing and appeared unconcerned, it’s being discussed at the ever present MDT where the radiologist will decide if too investigate...my point is without going on about my thing is my onco said that all these scans show up things we wouldn’t normally know about that may have been there for ages. The bone scan chap said too me that when they scan he can see all sorts of battered bone and damage, whilst doing the scan he asked did I work out, not because it’s obvious to look at me (oh how I wish it were) but because he could see all the damage to my bones. We had a full on chat where I was saying I get painful feet and he said no your knees are worse, so yes absolutely they can see all sorts of old injuries. 

I had my sentinal node last Thursday, it’s not too bad but a bit sore after. Haven’t had my results yet.

You will be ok, just tell yourself organs are all good and you need those bad boys to stay strong and if it is sinister then that chemo that went in today is going to hit it straight away...

[Aliand]

FEC 

I'm on different drugs than you but can I assure you its not as bad as you are thinking. I had a cannula a thin tube into the back of my hand for my first one last week. Once its in you dont really notice it. I sat for about an hour and a half in total but the time passed quicker than I would have thought. The first bit that goes through - the flush was slightly cold, not uncomfortable at all just a bit like when you have a cool drink and you feel the first mouthful going down. The actual drugs didnt have any feeling at all and I'm having Epirubicin which can damage veins so badly the nurse sits with you while you have it.

My taste went very quickly but 5 days later it started to return. I must admit to feeling a little odd but everyone is different even on the same treatment so you may not.

When you are there it all seems like the most normal thing in the world, the nurses I'm sure have seen every reaction going so if you do melt down they will look after you. But I bet you dont because it really doesnt feel that threatening.

Remember thousands of people have coped with chemo, you will too, but it really is ok to be scared witless, I'm scared of spiders and that makes no sense whatsoever !

Do whatever feels right, I'm having a PIC line inserted before the next one so I'm going to do some embroyery next time, make something beautiful out of something ugly.

Keep in touch, we are all here, walking this path together xx

[Starfire9]

Getting slightly panicky as first chemo tomorrow. Tax and Carboplatin. Any tips for what to expect. I seem to have a fear that I will feel the drugs in my body, that I will feel instantly different and that’s going to be it for the next few months. Did you all just sit there when the drugs went in as opposed to reading or listening to music? has anyone broken down during the session? I’ve been feeling okay since December and I fear I may regress to the panicky person in living hell that was me from diagnosis to final results,,,,, any ideas for mindfulness.? Thanks 

[Aliand]

Kirstyp. You have hear right scans can show up all sorts of things which is why they sometimes use different scans to make the information clearer. I had a friend who had spine shadows which turned out to be from radiotherapy damage but it was very worrying for a while.
From what I glean from other people with a big C journey it’s the uncertainty of what’s on and not in scans that is the hardest to deal with. I think even chemo can be easier as at least you know it’s purpose.
I think being able to ‘live’ around the uncertainty is a skill that can take many years to master so try not to worry any more than is natural and take comfort in that you e started the chemo so the battle has commenced and the eviction notice has been written to all the little blighters !

[Kirstyp86]

Hi everyone xxx
just wanted to pop a quick question on here ... I’ve skimmed through the chat but am so not with it so sorry for not directly commenting on all the comments ... br obviously sending u all MASSIVE hugs

I had my first chemo yesterday and today so cycle one is now done , so far I feel fab . But I got my CT resukts today which showed I need another biopsy on my under arm node this time as they think it has spread .... and then he told me something ‘not right’ is showing on my spine . Which as you can imagine knocked me for 6.... I just broke down.....
All organs etc are fine ... it’s just this spine thing so I’m being sent for an MRI.... of cancer has got to my spine I don’t think I could cope ,

But my question (sorry I’m going on ) is I’ve heard that a CT can show ANYTHING old wounds etc .... has anyone else ever heard or had this and it been nothing ?cxxxx

[Shocked]

Hi All

Just popping in to see how you are all doing looks like most of you are sorted with lots of honey and plans. I am patiently (NOT) awaiting my Oncotype test results and my appointment with Oncology on the 17th. 

[Jamesy46]

Hi ladies , I feel calmer now I know my plan , i Will probably have a bit of a breakdown on the day but so far ok x
I don’t think some people know what to say and it’s a bit hard for them x
Isn’t it strange the different combo of drugs were getting , confused daughter in her2 + like mom and I’m getting the fec-t , we just put our trust in the oncologist and hope for the best x

[Dealdoh]

Hi Rosie,  I have had that reaction also and get the impression that people think that I am either weird or putting on some sort of super strong face.  I do genuinely feel quite calm although I appreciate that “the other foot might well drop” and I could have some sort of meltdown.  Let’s hope not as I do do screamin’ Heebiejeebies quite well😜

Confused daughter - your mum is lucky to have you.  What a great support you are being for her.  I hope all goes well on Thursday

[RosieH]

Fec...you have the best user name yet!!! 

Sorryi cant help I’m having T x3 then Fecx3

got my steroids to start Thursday so might take advantage and go running Thursday night before I start!

Heres a random question...does anyone feel when they share the news people are shocked that you’re not in a corner crying somewhere? People say oh how can you be so calm...I’m not being funny but I’m not sure how else I should be!!! 

Anyhow im off too buy Manuka and it would seem a headband x

[Confuseddaughter]

Hi everyone...

I've been bit quiet on here for a while but mum starts the second part of her journey this week so thought via me, she could be part of this. Lumpsectory done back in November, lovely Christmas now time to start!

Tomorrow she has her first dose of herceptin so it's a good few hours at the hospital tomorrow we are told for observation, then Thursday starts chemo, as she is her2+.

Bit surreal that this day we knew was coming is here... mum is having paclitaxel weekly for 12 weeks and herceptin every three weeks.

We have been following everyones great tips and support, mum has been taking the manuka honey since diagnosis. We got it from holland and barrett, the 24+ one, highest concentration, it's a bit pricey at £55 but they have a penny sale on so you get two large pots for £55 which helps and she has a spoon a day! My sister dad and I have all had a cold the last month and mums the only one who hasn't! Think we need to start taking it!

Lots of deliveries in the post this week, paxman shampoo and conditioner, hair nets for sleeping in, silk pillowcases which are meant to be better for the scalp, eyebrow stamps (!), wide comb,Alice bands for the cold cap and have been told that whatever you do reg the cold cap, just make sure it fits right!

I know I'm not going through this myself but have been there every step with my mum and am always reading everything posted on here, it helps. Was thinking this morning, of all the emotions felt the last few months more so at the time of diagnosis, feel like they are resurfacing a bit and try to not get upset but we are ready for this now. Also will show mum the responses and comments from everyone so she knows she's not the only one! (She's not too technological!)

Thinking of you all and here's to the next few months. Reassuring knowing you are all out there going through similar experience and I think when mum goes to the ward Thursday she will see that herself.

Take care everyone and if starting, sending you hugs and support

Xxxxxx

[Dealdoh]

Hi Jamesy

Mine was a portacath also, not a Hickman line and I had to have this because I have had total axillary clearance from both sides.  Sorry I can’t help with any more info.  Sorry Fec but I can’t you either as I am having the same combination as Tracy.

[Tracy12059]

Hi jamesy46
It wasn’t a Hickman line it was a portacath which is fitted under the skin in the chest area. I believe the two are different so it’s no good explaining the process. I’m sure you will be fine and the line will make the chemo much easier. I had the port as my veins are really fine. They needed to put a canular in today to sedate me for the insertion of the port and it took them 5 attempts to find a vein in my hand. I’ve ended up with black and blue hands from all the collapsed veins 😢. The port will stop all of that so I’m really grateful it’s in place now although it’s really tender and I’m struggling to sleep. I’m having 3 FEC and 3 docetaxel

Good luck - let us know how it goes! X

[Jamesy46]

Hi dealdoh , was this a Hickman you had fitted ? Mines Thursday and I know nothing , just to turn up at 7 am x
Fec -in hell , I’m having 3 fec then 3 T so can’t help sorry x

[Starfire9]

Hi,

im due to begin chemo this Wednesday so I am starting to worry. I have been told I will have Tax for 1.5 hours and then Carboplatin for 30 minutes straight afterwards. Has anyone else had this combination?  x

[Dealdoh]

Hi Tracy 

It didn’t go too badly at all. Unfortunately had a four and half wait because they had squeezed me on at the end of a list but once in I done and dusted in about 20 mins.  It is a little sore and the chest incision is leaking a bit but I have just padded it up for now and will check it again tmw.  Hope all goes well for you on Thursday Tracy and for you on Friday Rosie.  It will be interesting to compare notes.  

Sounds like you have got a busy time ahead Jamesy but it’s good th have things to do rather than just be hanging about.  Thanks for you good wishes Ali and and good to hear it wasn’t too terrible.  I am a bit worried as my son who lives in Canada is coming across to visit for a week on 17th and I am hoping that I won’t be in the throes of chemo side effects.

[RosieH]

Thanks Tracey...

saw onco today and she was really amazing!! All ready to start now, got my Steroids as I start with T and end with FEC. 

Im feeling we are all ready to go now...will update you all after Friday xxx 

[Jamesy46]

Ailand that is so reassuring to hear , so pleased to hear that you didn’t suffer to badly !!! Hope they can sort out that sickness next time for you ?
Tracy is it a Hickman you have fitted ? My appt was a bit rushed this morning , I don’t know anything about what’s going to happen on Thursday just to be at hospital by 7 am
Mrs mg how are you feeling now ?

[Tracy12059]

Hi Dealdoh
How did the port insertion go? Mine went well and I’m back home now! A little bit tender but just taken some ibuprofen which is kicking in. they've left the gripper in mine ready for chemo on Thursday. One thing less to worry about!!!! X

[Jamesy46]

Hi !! Sooo , I’m at work tomorrow for last day !
Wed I go to Cannock in the morning for some pre op blood

Thurs I have to be at new x at 7 am to have Hickman line put in as veins are crap

Fri I go to Cannock hosp to have the Hickman line care

Mon 29 th I go to Cannock for pre assessments

Thurs 1feb is first chemo
In between theses dates I will have appts for cardio gram and ecg and also pick a wig !!
Just so glad have started ball rolling !

[Aliand]

Hope it all went well x

[Aliand]

Hi all. I had my first chemo on the 3rd. It made me feel weird. Vomited that first day felt sick for a few more days. Back on my feet now thankfully. Wouldn’t say I flew threw it but it was ok. Hopefully different sickness meds next time will help. Good luck to those of you starting today. It’s a funny sort of club this isn’t it.

[Jamesy46]

I’m off in ten mins for my first appt with onco , so nervous stomach is churning , full you all in later x

[Tracy12059]

Good luck RosieH - we can smash this! Catch up with you after the first round - we can compare notes! Take care. Night xx

[Tracy12059]

Hi Dealdoh.
I’m not sure if I’m getting the injections 🤔 - I can’t recall them mentioning them. When I get my port fitted tomorrow I’m to collect some tablets they want me to start on Wednesday - I don’t even know what these are for but I'm sure I will find out soon!!!!

Have a fantastic birthday - so kind of them to let you enjoy it. Make sure you go out for a slap up dinner. It might be the last you enjoy for a while!!!!

Good luck tomorrow too! I’m in at 10am! Will let you know how it goes!

Hugs xx

[RosieH]

Hi ladies I’m starting Friday too...I’m starting on the T not the FEC!, Just want to get going so I know what’s going to happen...x

[Dealdoh]

Hi Tracy

im also having my port inserted tomorrow!  They were going to start my chemo on Wednesday but they saw it was my birthday so kindly delayed until Friday 🙂.  We definitely seem to be on the same path.  I am not usually too bothered by being sick but will be getting various ginger based stuff to try and alleviate any nausea. Manuka honey is also on my list.  I was practicing tying scarves last night when I couldn’t sleep!

I am also having fecT, three cycles of each.  Are you having the GCSF injections?  I am, together with Zometa (bone strengthening) injections, radiotherapy after the chemo and then the hormone targeted medication.  

Good luck for tomorrow Tracy and on Thursday if I don’t see you beforehand.  First step on our rocky road but we will get there.

[Tracy12059]

Sorry should ready Dealdoh!

[Tracy12059]

Hi deladoh

I’m the same! Got my portacath being fitted tomorrow then dirst chemo on Thursday. I keep dipping in and out of forums and seeing all the ladies who’ve been lucky enough to not have many side effects and I fill with positivity then I read about the poor ladies who have suffered immensely and I then believe that’s going to be me!! I am terrible at being sick, I pass out, and can’t cope so that’s my biggest fear. I’ve bought stuff like ginger biscuits, queasy drops, ginger tea and my latest purchase is a watch (emeterm) that you wear on the wrist which gives you electrical pulses to combat the nausea! It cost a fortune but I just bought it in the how it works! My next purchase is Manuka Honey and once again that’s really expensive! It’s costly this BC business but of it helps get me through chemo then bring it on! Good luck next week - will let you know how o get on. Ps - what are you having? I’m having 3xfec and 3 x docetaxel xxx

[Dealdoh]

My first chemo is next Friday.  Although I am trying to think positive (following the great example shown by the lovely crew on here), the thought of it is quite daunting.  I swing from hoping that I am going to be of the lucky ones who get few side effects to thinking that I am going to get mown down by the chemo truck.  This is keeping me awake at night tbh.

[RosieH]

MrsMG...was that your first chemo? How did you get on...sending lots of hugs xxx

[Jamesy46]

I’ve been taking the Manuka honey since just before Xmas , all of my kids have had sniffles and one had that dreaded cold virus going around so I’ve been putting it in hot water in the morning g and night , can’t swear by it obv but have bypassed the colds xx and I love the taste x