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June 2018 Chemo Starters

cdc1811
Member

Re: June 2018 Chemo Starters

A family friend who had an arduous time with chemo a couple of years ago has just messaged and I felt inspired by what she said to create a new motto:
CHEMO IS MY FIGHTING FRIEND!
Just trying to see this treatment positively. It’s getting rid of the cancer and preventing a re occurrence. Just have to remember it’s on my side when I’m feeling grim! Xxx
cdc1811
Member

Re: June 2018 Chemo Starters

I’ve had no appetite either ktk but did feel better once I’d taken my meds and was able to have a very small bowl of porridge and fruit.  Hope your headache subsides.  I’m going to do some PICC research.  Like the idea of no canulars and the funky covers.  Do you have to heave yours checked my a district nurse each week?  Have a restful day Xxx

ktk
Member

Re: June 2018 Chemo Starters

Morning all. I slept on and off but still have a cracking headache. Just about to take morning meds. One has to be taken with food so I’ll have a bit of yogurt, but I don’t really feel like it.

CDC the PICC is good as you don’t need a cannula every time. LJ I was given a waterproof sleeve for the shower and you can buy them on Amazon. I have also got a couple of funky PICC covers which are better than the stockingette, not so clinical!

Good luck today everyone. X
cdc1811
Member

Re: June 2018 Chemo Starters

Sorry to hear of your PiCC line dramas.  I have been offered one and they told me there are waterproof sleeves you can buy to use whilst you are showering.  I am weighing up the idea so will be interested o see how you fins yours LJ.  The thought of no more canulars is very appealing!., Best of luck for today. 

i slept ok but haven woken up with a headache, absolutely no appetite and feeling decidedly queasy.  

How did you fare ktk?

hoping antisickness meds will help.  

Any recommendations for a light breakfast?  Just the thought of eating or drinking anything makes my stomach turn.

Hioe everyone else is nearing up.  Take care and hugs to all.

Clare xx

 

SallyG63
Member

Re: June 2018 Chemo Starters

Good luck LJ

The cold cap is doable. I get brain freeze from a mcflurry and I managed it. The first 15 minutes is really hard but it passes and you forget it's cold after that. Make sure yoy take a book or something because there's so much sitting around.

Sally

Embolorry
Member

Re: June 2018 Chemo Starters

Good luck today, take warm cardigan with you in case the air conditioning is on and you are dressed for summer. I had sandals on and had to ask for blankets I got so cold!!!
Sending love,
Xx
LJ
Member

Re: June 2018 Chemo Starters

Glad to hear you've survived day one KTK and CDC - hope you have a good night's rest and tomorrow continues well. 

 

The bleeding stopped with with extra pressure on the PICC and I managed to sleep without lying on it!  Imagine if you me and MrLJ fighting with a roll of cling film at 5.15am trying to waterproof me sufficiently to go in the shower!!!  There has to be a better way!

 

So tomorrow is my D-Day - 9am will see me donning the cold cap so it'll be shoulders back and best foot forward. See you the other side!

 

LJ

Embolorry
Member

Re: June 2018 Chemo Starters

Well done ladies!
Hope everyone sleeps well.....
Xx
ktk
Member

Re: June 2018 Chemo Starters

Thanks. Temp ok so I’ll take some paracetamol and my 8pm meds. Just read the leaflets. Side affects horrendous !! Then injections start on Thursday. Joy.

Hope you have a good night cdc. Love to all. Xx
cdc1811
Member

Re: June 2018 Chemo Starters

Thanks Sally will have a cuppa then it’s bed for me xx
SallyG63
Member

Re: June 2018 Chemo Starters

Glad you finally got sorted CDC.

I was told by my oncologist to take any antisickness meds even if I didn't feel sick cos it would stop it hitting at all.

Plenty of fluids and a good night's kip.
cdc1811
Member

Re: June 2018 Chemo Starters

Well after a 5 hour wait for pharmacist to release my chemo drugs (he was waiting for the full echocardiogram report) and an initially badly placed cannula (ouch!) I finally had my first session of chemotherapy. I don’t think the nurses had ever seen anyone so happy to receive it but I was so fed up with all the waiting around. All done by 6pm. I didn’t even feel nervous. Administering the drugs went smoothly and I was feeling absolutely fine until a few minutes ago. I have started feeling queasy too ktk and a headache threatens. I was told not to take paracetamol until I’d checked my temperature as it can mask any problems. If temp is ok then it’s fine to take it so might go and take my temp now just in case. I feel clammy but I think it’s just the weather. I’ve just got to get my daughter to bed and I’ll be having an early night. Thanks for all the good wishes everyone. Take care xxx
ktk
Member

Re: June 2018 Chemo Starters

I feel like I have a bad hangover! Bit headachey (can I take paracetamol?), and I don’t quite feel sick but a bit of a queasy tum. Maybe a G&T would help 🤣 x
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Well done Ktk one done!!  Weird sitting back at home waiting for something to happen isn't it.  Get ready for weird cravings!!  Cdc I hope you got your chemo eventually, poor you all that waiting but at least they fed and watered you.  I've bought my wig although haven't got it home as it needs adjusting for a proper fit, very pleased with it just hope it's ready before the hair goes!  After missing my long hair I ended up getting a short one... Never thought I would.  Sleep well everyone

SallyG63
Member

Re: June 2018 Chemo Starters

Hi Ktk,

Glad it went well and you're feeling OK.

Sally
ktk
Member

Re: June 2018 Chemo Starters

All done. Home in the garden now. Feeling ok so far .... Enough anti emetics to sink a battleship! Nice pink wee! How are you doing CDC? X
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

well done KTK!  Heart

ktk
Member

Re: June 2018 Chemo Starters

Picc line in, anti emetics in. Just waiting for the chemo now. Decided not to bother with the cold cap but have been bought some pretty scarves. No idea what to do with them though!

Hope yours is going well CDC. X
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Good luck for today CDC and KTK, I am sure that Shi is steadying the plane for your boarding and you'll soon be jetting across to the island with the rest of us!   CDC - I can't believe the problems you have had with getting these appointments sorted, I thought mine was a pickle.  Still not convinced that not having had my CT scan prior to chemo is a good idea but onco's don't seem worried so just have to go with it, I've still not got an appt for that yet but I will be seeing Onc team on 27 June for follow up appt from first chemo so hopefully can ask all the questions then.  I'll be thinking of you all today, I'm day 9 now and feelling pretty good, sleeping well, sore mouth not as bad now (Cordysyll was recommened by the help line) and still have taste buds so hopefully you'll have the same experience and just a few days of yuckiness and then some good days too.   My hair's still there, discovered the tingling is some spots on my scalp, seem to be turning into a teenager again.. if only I had the face of one!   Oh one new side effect today is bit of thrush down below... GP issuing a prescription for something for that, I'm definately making use of the helpline this week, I think its just panicking about everything but hey its our health at stake and they are so lovely I have decided to check anything and everything with them.

Fingers crossed everyone has a good day today...Kip xxx

SallyG63
Member

Re: June 2018 Chemo Starters

Good luck ktk today.

You'll be fine, and if you're trying the cold cap, grit your teeth for the first 15 minutes. Get past that and it becomes easy.

CDC, I hope you get the answers you need today for things to get moving.

Have a good day all, I'm sure England put a smile on your faces last night. I know it did mine.
cdc1811
Member

Re: June 2018 Chemo Starters

Thank you ktk. You too! Xxx
ktk
Member

Re: June 2018 Chemo Starters

Hi ladies. Today is the day I join you on the chemo thread. It has been good reading your experiences. Good luck CDC for today too xx
cdc1811
Member

Re: June 2018 Chemo Starters

ktk Hope all goes well tomorrow. Will be thinking of you! Xxx
cdc1811
Member

Re: June 2018 Chemo Starters

Oh gosh LJ Hope the bleeding stops soon. You’ll be ambidextrous by the time it’s all finished!! What made them decide to put in a PiCC line? I’ve been told they will try and use a canular with me to start with but as I have had some very bad experiences with canulars they might consider a port or PICC line. Also they are meant to use the opposite side to where you have had surgery but since I have bilateral BC I’ve had surgery on both sides so not sure which one they’ll put it in! Really do hope that putting more pressure on it has worked and you can get some rest tonight. Take Care. Xx
LJ
Member

Re: June 2018 Chemo Starters

Gosh CDC that all sounds a bit of a pickle 🤔 Hope tomorrow sorts itself out one way or the other. 

 

Had my PICC line fitted this afternoon.  The procedure itself was painless and didn't take too long. Bit disappointed it had to go in my left arm (my dominant hand), but they said because I'd lymph nodes out (only four 🙄) they couldn't put it in my right. Feel all a bit unco-ordinated. It's bleeding still, but the advice I was given when I rang the unit was to try and put more pressure on it and keep an eye on it. So I've tightened the bandage and crossed my fingers. 

 

Roll on Wednesday, patience is starting to wear thin!

 

LJ

cdc1811
Member

Re: June 2018 Chemo Starters

I have signed the consent form and the chemo ward sister has asked me to bring in my own copy. Not sure why the oncologist hasn’t given them the original?!  The wounds have healed sufficiently according to the surgeon but I will certainly ask the opinion of those on the chemo ward itself. Even my surgeon seemed exasperated by everything that’s gone on and phoned the oncologist who said it was Ok to go ahead.  Does the oncologist usually do a physical examination?  Oh well will see what tomorrow brings but I will certainly consider asking them to delay if I feel I have been given insufficient information. 

SallyG63
Member

Re: June 2018 Chemo Starters

If you have not seen anyone have you even signed the consent forms for chemo?

Also, I was told chemo couldn't start till my wound was healed because of the risk of infection.

In your position CDC, I'd be telling them to do one and I would not be starting chemo tomorrow.
cdc1811
Member

Re: June 2018 Chemo Starters

Aagh! Had 3 appointments at hospital today: wig selection, wound check with surgeon and an echocardiogram. What they failed to tell me was that I was also booked to see the oncologist at 1pm’. I’ve had no letter, text or phone call telling me this. I informed the hospital last week I wouldn’t be able to go in till after 2pm today as my daughter was performing in her concert. They also told me I won’t be seeing the oncologist on Thursday either as despite telling me verbally and sending a letter to confirm the appointment the computer system now says it’s been cancelled. I’ve now had no pre-chemo and no talk with the oncologist so feel totally unprepared for my first session of chemo tomorrow. I have been given 3 different times to arrive at the chemo suite by 3 different people but hoping the Sister in charge told me the correct time. Who knows???? Just to add further stress my CT scan at a different hospital tomorrow morning has been brought foreward to 8.45am. Oh well Hopefully I’ll be so taken up with logistics on getting from one place to another that I’ll have less time to be scared!! On a positive note my wounds have started healing well so no more PICO dressings- yippee!!! I think recording temperatures, drugs and times taken and side effects might help me to see a pattern too. My brain is already frazzled! Have most people found they have an itchy scalp before their hair falls out?
Kip I hope you like the wigs and that your mouth is less sore. Enjoy the honey! Xx
SallyG63
Member

Re: June 2018 Chemo Starters

I'm not keeping a chemo diary,except for in the thread sort of. The less I have to think about it the better as far as I'm concerned.

The only thing I used manuka honey for was helping my wound to heal. Other than that honey is pretty much off the menu for me.
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Ladies, Loving the ice cream post Em, anything that takes your mind of things has to be good.  I hate ice cream but found myself craving some the other day... weird!

CDC - Glad you allowed yourself some angy/down time, its hard being positive isn't it, my weekend has been emotional too.   I keep a diary for my chemo, the nurse said it was useful to see a pattern in any side effects, I write my temperatures and the times I took my pills too as I can't remember half the time!   At my hopsital you can pop into the chemo unit any time, I just wandered in the week before my chemo and the nurses showed me around, I am sure they'll do that for you too, it does help to take away the scariness when you know what it looks like.

Miss P - sorry to hear about your side effects, are you on the first cycle?   Is it FEC?  My head is itchy and sore too, day 8 - so keep expecting something to happen,  I am hoping that once its gone I can move on from the waiting for it to go and get used to being bald, I'm getting my wigs tomorrow in readiness and have some little soft hats to wear but still dreading it... if only they could invent a chemo that didn't cause hair loss I think we would cope so much better!

I am now going to have some Manuka honey, tastes nice if nothing else.   Feeling pretty well today, still  have slight sore tongue but otherwise ok.

Have a good day girls. Kip

cdc1811
Member

Re: June 2018 Chemo Starters

Your post made me smile Em. Thanks for the good wishes. xxx
Embolorry
Member

Re: June 2018 Chemo Starters

Hi all,
Just wanted to send love to you all.
I def have dry, sore mouth but I find eating a whole tub of salted caramel ice cream seems to distract me for a bit!
I put Manuka honey in smoothies and teas, but I don’t know whether it does anything apart from taste nice.....
Wishing everyone starting chemo this week lots of love, and hope everyone has good weeks......
Sleep well all,
Em
Xxx
cdc1811
Member

Re: June 2018 Chemo Starters

MissP I do so hope you have a better week. Sending hugs xxx
cdc1811
Member

Re: June 2018 Chemo Starters

Hi everyone Sounds like a bit of a mixed bag with regards to side effects and emotions today.  Glad everyone is feeling a bit better now.  Have to be honest and admit my day was a bit of a right off as I just felt so low.  Father’s Day is still hard going as it’s only the second one since my Dad died and my family has just had so much to deal with in the last couple of years and now we’re all having to come to terms with my diagnosis.  I also had an overwhelming sense of anger that I’ve been under the High Risk Family screening at my hospital for 8 years and my tumours still weren’t picked up earlier as I am ‘mammographically occult’ due to dense breast tissue and now I have to deal with all this b***y treatment.  I know I’m just wallowing in self-pity and I’m sure I’ll pick myself up soon but I need to allow myself to be this way sometimes and not relentlessly positive- it’s just too exhausting.  What is the thinking behind the Manuka honey? I’m willing to try anything that might help.  Is anyone keeping a ‘chemo diary’?  My OH and I were wondering if there is an Ap you can use to track side effects etc...  Is this the sort of thing I’d have found out at a Pre-chemo meeting?  Hoping to be able to pop in to the department between appointments tomorrow  so I at least know where I am going on Tuesday (if I get the ok to start) and what the chemo rooms looks like.  Best Wishes to all. 

Mummy_1980
Member

Re: June 2018 Chemo Starters

 
Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Lots of ladies use manuka honey, also Life Mel honey is good during chemo. Miss p 😘😘😘💪💪💪💪well done with shave, it’s another hurdle you’ve jumped over on the journey, keep urging the make-up on it does help, promise 😘😘 kip great news you are feeling 👌 LJ, 1st time I’ve heard someone’s had to provide a wee sample, they usually just take your word for it, at least you know they are being thorough. If you are on fec, the red one makes your pee pink, so don’t 😲😲😲it’s normal, ensure you drink 6-8 cups fluids a day too 💕💕Shi xx
LJ
Member

Re: June 2018 Chemo Starters

Oh MissP - don't have any advice or help to give, but I do have plenty of hugs for you

LJ
LJ
Member

Re: June 2018 Chemo Starters

Woo-hoo Kip - that's good news!

I was contemplating trying manuka honey as I'd also heard good things about it. Just the thing with ginger and lemon tea!

LJ
MissP
Member

Re: June 2018 Chemo Starters

Had an rough week this, woke in the middle of the night on Wednesday it felt like my heart was trying to jump out of my chest. Monitoring via my Apple Watch I was beating upwards to 98 beats per minute, this then combined with joint ache was awful. I took some pain killers and rode it out, very emotional that day also. Spent Thursday resting, woke up Friday and decided to wash my hair as my scalp was itching. I started to gently comb it out and realised that my shedding was not normal shedding. So made the decision to shave it off, then promptly broke down when my twin brother rang me crying (I’d sent my immediate family a picture of my new look).  Hoping that next week will be better...

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi, had to post as sat here and just realised I no longer have “chemo fuzzy head”. Yayyyy. Just slight sore mouth.  Is anyone else taking manuka honey whilst having chemo.., have read good reports about it but wasn’t sure

LJ
Member

Re: June 2018 Chemo Starters

Sorry to hear you've both had some difficult days Sally and Kip but glad you've come through them. 

 

Had my chemo nurse appointment this morning which was useful - helped cement a few things in my mind  and plenty of chance to ask questions. Was also fitted for my cold cap. (I will also have the injections.)

 

Has anyone else had to take a wee sample along with them on chemo day for a pregnancy test? 😱 Apparently it's protocol for anyone under 55 and despite me being adamant I'm not pregnant I have to have it 🙄

 

Bought some bits and bobs today, toiletries for my hospital bag, wide toothed comb, soft toothbrush, hair net that kind of things. Also ordered a silk pillowcase to reduce friction on my hair. Not much longer now. 

 

LJ

Jencat
Member

Re: MorningippppRe: June 2018 Chemo Starters

Kip, just to be on the safe side, make sure you take your temperature before you take anything just to check it's not high because once you've taken something it will bring your temperature down x

Jencat
Member

Re: June 2018 Chemo Starters

It might be worth asking about the injection times when you next have chemo Sally, but I was told evening so the pain wasn't so bad because you were asleep. Can't remember if the hospital told me about taking it out of the fridge half an hour before it was needed or one of the girls on the Oct thread.

I know the injections are to help us, but I think my symptoms seemed worse once I'd had them! I mentioned it to my onc and she said it was just a coincidence, but I'm not so sure! She said I could cut down from 7 to 5, if my white cell count was ok on the 5th cycle (I'd only had 5 injections cycles 1-3) and fortunately it was and the 6th cycle, she said I could just have 5 anyway. I think my expectations must have been lowered during chemo, but I remember feeling really chuffed with myself that I'd persuaded my onc to let me have 2 less injections!

I think the injections must be a fairly new thing, my friend had bc 6 years ago, treated at the same hospital as me and didn't have them.

Glad to hear you're not having any other side effects x

SallyG63
Member

Re: June 2018 Chemo Starters

I've been taking mine in the morning Jencat, straight from the fridge! no one told me a specific time to take them, just once a day.

The pain was like being in labour. Still, given that it's the only side effect I've had, I can't complain. (That won't stop me though!)

My white cell count was slap bang in the middle of the normal range pre chemo and I was fine for a week. I might suggest I have a couple less next time, if I have them to try and avoid that again.

Funnily enough though Kip, I didn't get any antibiotics. Maybe you get them instead of the injections where you are. As for paracetamol, as far as I'm aware that's fine to take.
Kip
Community Champion
Community Champion

MorningippppRe: June 2018 Chemo Starters

Morning I havent been given any injections with my Fec so guess I'm not having them.  Glad the pain didn't last too long Sally.  I'm on day 7 now, had emotional day yesterday, overcome with fear, anger and dispair and couldn't shake it until a friend came over and took my kind mindm off tuings it builds up I guess.  my soni left school in Friday and I feel we should be . celebrating nbut instead I feel I'm just counting days between chemo, appointments.  As for side effectsi have a bi of a sore mouth and had a banging headache yesterday.  Can we take paracetamol?  I rang the helpline for sore mouth advice and she said salt water was best or to buy cordysl mouthwash.  I've done both and it's ok now, still have taste buds too.  First day of antibiotics which have to take for 10 days, does everyone get those?  Noticed my head is starting to feel sore so guess the hair won't be around for long, dreading that bit more than inthoughI I would.  Will brave the shave when it starts.  Oh well 17 weeks left til end of chemo !!

Jencat
Member

Re: June 2018 Chemo Starters

Morning Sally and cdc, I'm from the Oct thread and finished chemo in Feb. I'm not sure that all the trusts give the injections, but I had to have 5 after each Fec and 7 after T-although I managed after the first dose of T to persuade my onc to only have 5 still as I think they made my bone pain worse. I don't know if you were told a time to have them Sally, but I was told evening so that you could sleep afterwards. Also, to take the injections out of the fridge about half an hour before you use them. Glad you're feeling ok today x

SallyG63
Member

Re: June 2018 Chemo Starters

I don't know if everyone has them. They are injections to boost the production of white blood cells to fight ant possible infections. It helps boost the immune system. I had to start them last Sunday and do them everyday, today was the last one. I assume I'll have to do them again after the the cycle but I don't know for sure.
cdc1811
Member

Re: June 2018 Chemo Starters

So glad it’s passed Sally but what an awful experience. Hope you have a much better day today and are pain free. What are these injections? Do all chemo patients have them? I really do need to do some reading up as I won’t get a pre-chemo appoibtment now. Hope everyone is doing OK today. My husband and I went to a concert given by the choir we usually sing with, it was fantastic but just so frustrated and sad that I haven’t had the energy to go to rehearsals. Feeling very tired today too even though we were only out till 10.15. That’s a late night for me now!
SallyG63
Member

Re: June 2018 Chemo Starters

So after no side effects I got hit yesterday with awful bone pain in hips and back from the filgrastim injections. I had to take codeine which just took the edge off. At one point I momentarily passed out on the floor in a sweaty mess of pain. Was going to call hospital but left it to see and it passed very quickly although I was very tired. All I was able to do all day (after blitzing the housework first thing before it started) was lie on the settee watching football. 🙂 Woke up this morning right as rain again.

Sally
cdc1811
Member

Re: June 2018 Chemo Starters

I’m surprised they’re doing the echocardiogram so late LJ. Mine is on Monday and I’ve been told I must tell them it’s urgent and that they need to release the results immediately so they’ve been viewed before I start chemo on Tuesday. Might be worth seeing if they can bring it forward. Also it would be a shame to miss the LGFG session. I know what you mean about everything stating to seem very real. I’ve been feeling very apprehensive but I know we’ll be fine. Thanks to all you lovely ladies who have started already and are sharing your experiences. The tips are helpful and reassuring to hear you are doing ok. Big hugs to everyone xx