May 2017 chemo starters

[treehouse]

Rosie you sound at the same stage as me with the hair. Hope kitty is ok. Your throat sounds like infection did you say you had seen the doc? How is your temp? Hope the new meds work fast. It sounds miserable. Big hug

[Trisha69]

Chuck lottatong  (Typed in porn names, this is what Trisha came up as!!)  Lol  will stick with Tia for the wig.  My breasts however are called Bert and Ernie xx

[Trisha69]

 I had   fitting this morning, and the 1st one she tried, called Tia was the best!!    She had another lady after me who had picked it out as one of 5 and I was still in Exeter after her appt and got  a call to say it was still available Well chuffed (Back a/c not quite so)

x

All the best for Kitty

[Rosie65]

Hi ladies - your posts have kept me highly entertained today whilst I've been (supposedly) working

Have stocked up on Corsodyl/Difflam/ Biotene toothpaste. Throat is still so inflamed and sore, covered in white/ red patches, hope it starts to clear up soon.

Kitty being fed via tube while her throat (pierced by twig!) heals and at 4am this morning I actually felt that might be quite a good idea lol

Will have to come up with a name for the wig now - if I ever get the thing out of the box. Although with the layers of hair that have descended on the house today that moment can't be far off.

[Mai7]

Haha, I'll call it Lola! Glad you're supervising the gardening to avoid injury.

[treehouse]

Kevlar gloves. I like the sound of that. I am making the family do the hard work, I just potter and give instructions 😉. Porn star name lol....let us know when you come up with it . Mine is called Ashley and I will be needing it sooner rather than later.

[Mai7]

Trisha, glad you found a wig that you're happy with. My wig is called 'dream' which isn't really a name so I was thinking I should give it a pornstar name! 

Treehouse, I'm going to get some Kevlar gloves for protection against cutting/gardening. Have you looked these up?

[Trisha69]

Happy gardening!  Im off for a kip xx

[treehouse]

Yay about the wig. And glad you got some meds. Enjoy the rest of your day. I am pottering in my real garden. One of the things I was looking forward to while I am off. Top tip. Put on loads of sudocrem under 2 pairs of gardening gloves. Prevents scratches and reduces risk of infection.

[Trisha69]

Been out since 8am, went to Wig fitting, have a gorgeous blonde wig called Tia, I look like Amanda Redman again only younger, a Turban two scarves and a bed cap!  Saw BCN  and have antispetic throat wash some lovely Glycerine pesseries to insert!  Oh the joys!  Funny reading all the posts about lady gardens, keep it up girls, made me laugh!!  Trisha xx

[Trisha69]

LOL x

[misyangel]

Hi Wandestrong ,  I didn't take anything to session just hot water and lemon to sip on.  My mum came with me for my first one and the chap that was injecting me never drew breath lol.  when I had my first fec they were only injecting the chemo for 1 hour.  It took a little longer for the first session but my appointment was 9 and I was finished for 10:45.  I recommend loads of water.  Make sure you take you steroids no later than 12:00pm otherwise you will be awake.  Also I had to inject for 5 days after and apparantly the injections are what causes the bone pain.  I didnt find out about injections until I got there, but I had read on this forum that people had to have them.  I had the district nurse do the first day and she will come out for 5 days but I felt it was easier if I could do it myself.  I felt very drunk when I got back after session and away with the faires.  I felt fine the next two days but by the third day and four day I was so exhausted but think this was due to lack of sleep.  Also the metallic taste in your mouth is not pleasant,  Just make sure you drink plenty of water to keep flushing it out your system.  They do say to move about a bit but I was in bed and resting most of time. Fortunatly I had no sickness but was given the emend drug which seemed to work wonders for me.  I also didn't lose my appetite if anything I was eating more.  Gosh 1 month and 4 year old you must have so much on your plate.  Sending big hugs and best of luck for tomorrow

[Mai7]

Wandestrong, The actual FEC treatment takes just under an hour but they also have to do a bit of prep first like putting your hand in a bucket of warm water to plump up the veins. Make sure they give you anti sickness pills before they start anything (they may need reminding).  They forgot on my first treatment and realised just before they were about to start so I had to wait an extra half an hour with the freezing cold cap on for the pills to take effect! After your first treatment you should get a prescription for this at next Oncology appointment. Don't be alarmed when you come out afterwards and your wee is bright red. Just keep drinking lots of water day 1,2,3 to flush your bladder and drink plenty of water this afternoon/evening too.

Treehouse, your migratory chemo cap got me howling! 

[Anniej]

Wandestrong, wishing you all the best for tomorrow. I think we are all very different as regards length of time. I'm very quick as I have a Hickman line, so about an hour and half. I found the time went waiting for the chemo to be mixed and brought up from the pharmacy. The first session was the longest, especially as the strength was wrong and another lot was brought up! 😱 Everything is double checked by two nurses, so there are no mistakes. There is a saline drip for you too, so it keeps you well hydrated. As I have my treatment in a large centre there were a huge number of people having chemo, and my 12.30 appointment started at 13.30, so a bit of a wait. We were given sandwiches and other snacks, but I took mints and ginger biccys, not knowing what to expect. The ginger took away medicinal taste, so I was pleased about that. All very painless and a fairly pleasant experience. Take any drugs they give you! 🍀X

[Wandestrong]

Thank you for the useful info. Not sure how long a session would usually last! My appointment is at 2.15pm and the centre closes at 6, so hopefully shouldn't be too long. Do you start feeling any effects immediately or is it more latent side effects? I have my sister accompanying me tomorrow but will most likely have to attend some of the later sessions myself as I have a month old baby and a 4 year old, so my husband will be staying home with them, while he's off work.

[treehouse]

Hi wolfee. Washed all mine early in persil non bio. The only thing that didn't bring out my boys eczema. No softner. No real smell. I tried sleeping in a cap last night to reduce the hair in the bed. Found it at 2am half way down the bed under husband. So that didn't work.

[Mai7]

The hat in the pipe is better than the cat in the bag! Surely?! I think we've all gone a bit bonkers lately.

WolfEE, I just machine wash chemo caps. For the wig you have to buy specialist wig shampoo and hairspray too (for synthetics wigs anyway)

[Mai7]

Just read the news after reading your posts about ONJ. Terrible news.  Here are my ONJ candles of hope. 🕯🕯🕯

[WolfEE]

Ratichr, oh noooooo! I shouldn't laugh but hat in the pipe!!!
On that quick question. From all your posts I can sense the head does get quite sensative so when you wash your caps do you use a mild hand wash soap or just stick them in the machine with your other normal washing? I've got a few caps and scarfs ready but am thinking I should give them a wash before I use them. I'm struggling with smells at the moment so perhaps I need to look for a fragrance free detergent??

[WolfEE]

Katie11, I actually remember myself doing a garden project at school we had to design a garden on a tray! How funny the garden will have a funny spin when you look at it.
I think MKJ has a good idea for the garden you could create a wildlife garden with some thrushes 😂 And a pond 😂😂
Good luck with the project keep me updated. X

[Mai7]

HI Wandestrong, hope all goes well for you tomorrow. I usually take some mints or gum in case of metallic taste. Xx

[Raitchr]

Laugh of the day... I have just hoovered up my chemo hat as I hovered all of the hair out of the bed! Now got a blocked Hoover pipe and hair everywhere, worse than having a cat!

[WolfEE]

Wandestrong,
Hi there, with FEC you have a nurse injecting the medicin into your hand physicaly by hand very slowly so she will be sitting with you and will chat away with you but because she is doing this your one arm is restricted so I think it would be difficult to read or do word search etc but if you take someone with you then you can chat with them or the nurse and the chair is a recliner so you can even put your feet up and close your eyes if you have any audio books or music on your phone.
My advice would be drink plenty of water before you go and while you are there it helps more than you can imagine both with side affects and veins. I was worried about needing the toilet all the time (and I did) but you can get up and go 2 the loo, your drip things go with you on wheels that you can push around and take with you.
Good luck tomorrow and try not to worry it really isn't as bad as you think it will be. You'll be fine xxxxx

[treehouse]

Oh and as I am there all day I have to take my steroids with me.

[treehouse]

Hi wandestrong. How long is your treatment? I am between 6-8 hours. I take snacks, water, magazine and husband. Also any meds so they can check. Don't forget your blue treatment folder.mobile phone. X good luck it is worth it. 💗

[Wandestrong]

Morning ladies,
I have my first FEC tomorrow afternoon! Trying to remain calm and positive about it. Is there anything in particular you would recommend I take with me to the session?

[treehouse]

😂😂😂 I must say you ladies are on form today. Keep it up. Well husbands idea of family activity is a trip to the car wash. Lol

[MJK]

Watch out for wildlife gardens 🌳🌳- they attract thrushes. 🐦 😣

[katie11]

You ladies and your lady gardens do make me giggle. My son has a school project to do and its design your own garden. All I can think about is a lady garden. God knows whats its gonna look like lol x

How you feeling treehouse. You definitely have the award for chemo experiences so far.

Hope Sarah and wolfEE are feeling better soon.

Had good evening last night felt good to be out and normal for a while. Even stayed up till 11.30 which is a record at the minute.

Hope you are all enjoying the sun in our factor 50 x

[MJK]

Sad to hear about Olivia Newton John. Hope the proton therapy works for her.

[MJK]

Trisha, I had movicol in my goody bag. The clues in the name. 😉 Lots of water and prunes / prune juice would help too. Prunes also have twice the antioxidants of blueberries. Nice one!

[treehouse]

Big hug Wolfee. Those pesky emotions stir up from time to time. Completely normal. Have fun with your nephew, get outside eat icecream🍦 or watch a Disney movie. My step kids arrive today for 4 days. They have blown me away with there acceptance and care. This has pulled our blended family closer and I already thought it was pretty blooming good.😁 counting my silver linings. X x

[WolfEE]

Olivia Newton-John 😞

[WolfEE]

Good morning (or should I say afternoon as it must already feel like that for Treehouse 5:30am!!)
Drought in lady pond 😂 I'm laughing again.
Trisha I took Dulcolax night time tablets from when I first started feeling a bit blocked I think from night 4-7 and this did help a bit I think but I will ask for something prescribed for next time.
Sarah19 I hope your arm is improving now you've had the antibiotics
I have my nephew who is on half term spending the afternoon with me today so hoping he will cheer me up I've been feeling a little low the last couple of days.

[treehouse]

Hi Trish. That sounds rubbish. Big hug.
Yes see BCN or talk to chemo team. Take someone you trust to your wig fit and have fun with it. Thinking of you today ❤ x

[Trisha69]

Sore down there! (BUM) BCN gave me Dioctyl 100mg tabs.  Mis read the label and only been having one a day.  Now majorly bunged up!! and bloody sore.  ANy one recommend a decent laxitive?  Am at the hospital today for a wig fitting, wonder if its worth asking see BCN??  Also throat still sore, burns to swallow.

Sorry for the moan.  Sleep crap too but on a positive still not been sick and on day 6 of Chemo.

Trish

[treehouse]

Morning ladies. Steroids have me wide awake since 5:30 but so far I feel good.this is the same as round one the wonderful protective bubble created by Emend and steroids that last for 3 days. Not looking forward to starting the jabs again this evening but I will man up.
Mai7 Lady pond!!! 😂 that's hilarious. Sounds like there maybe a drought lol.

Sensitive content. I did notice some soreness down there towards my bottom in the middle of round 1but as I have piles I used the cream for that which takes away pain. All sorted itself out in a day or 2.

[Anniej]

MJK, oil sounds worth a try, but not out in sun or you'll fry like a bit of steak! 😱 I go a nice colour with the chemo, but I'd rather be in the sun. My chemo nurse has said factor 50, which seems excessive, but I've complied. Nearly went cross eyed checking tiny writing on back of bottles for nasties !😎 I've decided to go with the Live Well with Cancer stuff and save my eyesight, if not my pockets! Best wishes to everyone on their journey this week.x

[Mai7]

WolfEE

WARNING: SENSITIVE SUGGESTION

I recently purchased a product called Hyalofemme in anticipation that the lady pond (if we have a lady garden, we might as well have a pond) may need TLC at some point. I think you have to be prepared to look after ALL mucous membranes. It's similar skin to the mouth, nostrils etc which can.... y'know, dry out.

[Anneemay]

Rosie65, I have used both Corsydl and Difflam in the past when on oral chemo, I found alternating them worked for me and also using a non alcoholic mouth wash regularly during the day especially after eating helped as well.

I had my weekly Pacitaxol today no.3 and felt really weary after, so came home and rested my eyelids for an hour or so. This rejuvenated me, hubby prepared and cooked dinner which was nice and apart from feeling achey around my shoulders, back and arms I am not feeling too bad.

I am looking forward to going up my daughters for a few days, she lives in Redditch, it will be lovely to see my 2 granddaughters and generally catch up face to face with them all. Hubby will be totally capable of looking after himself so no worries there. You have to snatch some normality when ever you can and I have over a week off treatment so I am going for it. I can't stay any longer as I have appointments next week, 1 on Monday to have a PICC line inserted, Thursday to see oncologist and Friday bloods prior to treatment the following Monday. Hugs to all Ann 

[treehouse]

Thanks Sarah and Rosie. Right now I feel fine. Taken all my meds and ready for an early night ( although the steroids may have different ideas). Hope you are ok Sarah so many things we have to watch for. Rosie take a shopping list to onc. They really do want to make this as easy as possible. But we are all so different. This forum helps so much giving us control over our treatment. Best wishes to all. ❤ x

[Rosie65]

Treehouse you definitely win the prize so far for most dramatic chemo session!

Thanks for all the suggestions for sore mouth/ throat, I'll  make a trip out tomorrow to stock up. Will definitely have to speak to the oncologist next week to arrange some additions to the goody bag - really feel I've missed a trick here ha ha

[Sarah19]

Rosie65 difflam mouthwash is very good for sore throats and ulcers. Hope all better with kitty soon 😞 treehouse sounds like you've had a horrendous experience today but hope being spoilt has cheered you up. I spent the day at the hospital having antibiotics via a drip. Went to see my GP this morning regarding my swollen arm which is bit infected from needle and he said they will need to see me at hospital to check not neutropenic - which thankfully I'm not. Now back home with a weeks worth of antibiotics which will at least get me through the dodgy low immune week. Wish I could
Brave going out without chemo cap. It was soooo hot in the hospital today!! Have a lovely evening ladies and good luck to anyone having any treatment tomorrow xx

[Trisha69]

Well done!! 🙂

[Raitchr]

Ladies, you have been busy again whilst I was out having bloods done for FEC 2 on Thursday. Have to say the results were back within 3 hrs of blood being taken, very impressed and all good to go for round 2. 

Re problems downstairs, I have been fine in that department apart for daily hair loss. Maybe it is because I am on 21 day course antibiotics each cycle. Who knows, maybe I have that to come.

Braved hospital, food shopping and ice cream parlour trip with family today, with my very short haircut!

Heather

[treehouse]

Oh that sounds very sore. I know steroids are an issue with fungal infections. I am definitely tingly in the lady garden. Like on my scalp as those hairs fall out too.
Big hugs my fellow warriors. We will have battle scars but we will win the war. ( too much game of thrones me thinks)

[misyangel]

Wolfee, SENSITIVE REPLY LOL

not sure what the cream is she has given as she has said it will be in my bags with all other medication when I have my treatment on Friday but my skin had blistered on the pernium section down below. Mine was a sting and a itch and when I looked with a mirror it was all blistered and broken and it seemed to get worse it was as if my underwear was irratating it more.  It got that painful it was keeping me awake at night.  My oncologist said it was a fungul infection but it was all on the outside not inside if that makes sense 

[treehouse]

Oh joy. More bits get broken. But please not THOSE bits 😉

[WolfEE]

Misyangel
WARNING SENSATIVE CONTENT 😳
You mention cream for down below in your goody bag, I'm glad I've seen this. Today I have had a kind of irritated feeling not sure if it's an itch or sting? Is this another joyful side affect or unrelated? I wasn't sure it's not a major problem yet (hope it won't be) but it hasn't eased off throughout the day. It's no worse but isn't any better. I hadn't seen this on my list of possible side affects.

[misyangel]

Had my first review which went really well.  I asked her if I could have the odd glass of prosecco and she said yes in moderation that will be fine.  I asked her why I was having 8 sessions of chemo and she said I may not make it to the full 8 as some people get to tired.  Due my second Fec on Friday and have also come away with more goodies, mouth wash, a tablet form for mouth ulcers and some cream for down below.  I also asked her what grading it was and it is grade 2 but they can't give definate answer until after surgery.  I must admit the worst part I hate is having the canular in, really don't want a PIC line though.

Whilst at the hospital saw another young women who walked in with bald head and I said to her I take my hat off to you I arn't brave enough to do that yet, I just thought how amazing.  I had all my hair cut off last weekend but husband had to shave it with razor as it was all patchy and that was worse then cutting hair off.  Really don't like the feel of my completly bald head.

Treehouse you poor thing, hope you enjoyed your chicken dinner.