June 2017 starters

[AliOG]

Thanks for that, Glamkaz. I really need to hear that I'm going to turn a corner soon. I know all the reading tells me it's going to happen but I still feel so foggy and spaced out, I can't quite believe it. I've managed to get an appointment for a remedial massage at 12.30 so hoping that might help my back a bit. Hopefully I'll cheer up by the afternoon otherwise I think my family are going to get proper fed up with me! Xx

[Glamkaz]

Hi AIIOG. I felt exactly like you and truly felt I couldn't do this any more.  Day 6 for me was my sons 30th birthday and had big plans.  Hang in there..... It's amazing how much better I felt on day 7 and even went back to work for a few hours on day 8.

[Glamkaz]

Hi, I too had 1st of 3 FEC and day 6 now.  Def feel more like myself now.  1st 4 days manageable and just like hangover but could still go about my life pretty normally.  Woke day 5 and felt like I had been run over by a bus.  Really bad headache and pains in stomach radiating to my back.  Felt dizzy and nauseous too.  Slept pretty much the next 36 hours on and off then felt better.  At least will know what to expect next time. No glad I found this forum as great to hear similiar stories and don't feel we isolated. Thanks 

[AliOG]

Morning everyone and thanks Tripletmum for the positive reminder that we are one month on.

I need all the positivity I can get today.  Now the steroids have worn off, the back pain I had prior to chemo one has come back with a vengeance. I can hardly move. This coupled with brain fog makes me feel totally useless. Husband isn't coping too well and just looks sad and distant all the time. I feel quite disabled and have gone from a fully functioning member of the human race to a bed slug. Really hoping this mood lifts soon  as I don't think I'll make it to chemo two at this rate. 

Have te the rest of you experienced this fogginess and when did it lift? I'm on Day 6 now and getting impatient x

[Tripletmum]

Morning ladies. Well day 2 cycle 2 was another kicker for me - spent almost all of the day asleep or trying to sleep (not ideal with 3 children). Just woken up day 3 to a much clearer head.

Anyway my though this morning is that we all started LAST MONTH and so are a month closer to completing this journey. Much love and may July be a good month for us all xxx

[Jintz]

Hi Queenbee,
Welcome, sorry your friend let you down. That must have been disappointing and added to your nerves. Hope the next will be better.
This is a lovely supportive bunch in this group.
Take care and good luck
Jintz

[AliOG]

Sorry, Daffodil,

Just read your message properly. Doh! Good luck for round two! You can do this!! Xx

[AliOG]

Hi Daffodil and QueenBee,

Well done for getting through the first one. I had my first EC on Monday so I'm now 5 days in. Sorry to hear you were let down by a friend. It's definitely easier having someone with you but it sounds like you managed by yourself so big pats on your back. I found the cold cap difficult but had my husband to coach me through the first 15 minutes, otherwise I would definitely have caved in.

My first 5 days has felt like a monster hangover. I've felt dizzy, spaced out, foggy and tired but it's all manageable. The hardest thing at the moment is trying to help husband and daughter come to terms with what's happening but I guess we're muddling through.

Take it easy over the next few days and rest as much as you can. Keep us posted with how you are feeling and gentle hugs to you both xxx

[Daffodil54]

Clinic appointment this morning. All good with great response to chemo after first cycle. Very happy. Next treatment on Tuesday. 

[queenbee]

Hi all. I had my first FEC yesterday. I'm her2 + so my treatment will be 3 x FEC and then 3 x TAX and then on my 4th one I had 17 Herception. My first time didn't go great.to start.. I planned to cold cap it but didn't last very long probably about 3 minutes. I was nervous and anxious anyway as my friend let me down and I couldn't get anyone to go with me last minute! When they took the cold cap off I was still pretty cold and they put the cannula in.. I started to feel woozy and clammy and I then passed out! Think it was a mixture of nerves and the freezing of the cold cap that got me! Apart from that the drugs going in was okay! I took about 2 hours and I was done! I felt very tired and fuzzy head (bit like a hangout setting in) and I haven't slept properly. I'm currently in bed at the moment just having some rest time so when it does it me (if it does) I'll be prepared! I'd love to join a buddy club if there is one going xxx

[Daffodil54]

Big hugs AliOG. Get well soon. 

[Jintz]

Hi AliOG,
I have no idea where I picked the infection up from especially as I was extremely careful with washing hands etc. So I had 4 days in hospital and now have to go down once a day to get IV antibiotics.
Got home last night. Today is day 15 and my hair is starting to fall out. Had a huge melt down earlier today but was lucky enough to have a visit from a lovely lady who has gone through very similar stiff and she calmed me down. I still feel quite she'll shocked but am thankful for small mercies.
Re injections, I did my own and had no problems. Just lots of aches afterwards but they were bearable.
I hope you are doing well !
Take care x

[Trisha69]

Check with Doc or Practice Nurse.  Ive had Oral thrush and has been horrid, ulcers too.  Do you have your Prescription exemption certificate?  Saves a fortune.  My spare room looks like a pharmacy.  Good luck!

[Ilovemarsbars]

Hey ladies
Anyone suffered with any issues down below? I feel like I've got thrush and wondered if it's common with FEC. I'm on day 14 now of fec 1.
If it's thrush can I just buy stuff of should I check with anyone? Sorry if to much info 😕

[Leekim]

Are you only having 4 ? Are you getting fec

[Leekim]

Hi everyone, I had my first chemo of fec yesterday and apart from some nausea I'm feeling ok . I had a picc line inserted which made the whole process go faster. I'm really worried about everything at the minute! I feel so vulnerable and seem to have gone in 8 weeks through a parallel world. Anyone else feel like this. I'm not sure I'm buying in to the reality of it all, maybe it's my way of saying not to close your not for staying here. Like an unwelcome visitor . The poem by rumi talks about this:) 

kim 

[Nixons3]

Hi everyone

Been quiet as had a busy few days....which is good as shows I'm feeling back to myself! Was just over a week altogether notnfeeling quite myself.  Hope you're all doing ok. Good luck Carole.x

[Tripletmum]

Just back from Chemotherapy No.2 - waaaay quicker than last time which is a huge relief. Now 50% complete, roll on July xxx

[Anniej]

Hi Skells, it's a self retracting needle. You need to hear it click to know that you have administered the full dose. The needle then retracts so that you do not get stuck with it and possibly infected. The gsf injections do help your body make white platelets as the chemo kills them all, leaving you very vulnerable to any sort of infection. They are in measured doses, so you need to get it all in. I absolutely hate needles, so the District Nurse does mine. I commend anyone who is able to do their own! You are very strong ladies. X

[misyangel]

Skells, just dropping in from the may thread - It should spring out while it is still injected but I found you have to press really hard to get it to spring back as the first two I did it didn't spring back as I wasn't strong enough to full press it down if that makes sense, so the first two I did I had to pull the needle out.  After that I got someone els to do the injection as I found I just didn;t have the strenght to fully push down.

[Skells]

Hi, I've got a question about the injections. On mine there's a cover that's meant to pop out once you've fully depressed the plunger. Does anyone know if this should spring out while it's still injected or do you remove the needle first. I think the purpose is to stop needlestick injuries by springing out a cover round the needle. I don't want it to pop out when it's still in my stomach but now I'm worrying I haven't been doing the full dose (although it's only a tiny bit of be missing). Just wondering how every one else is doing them.

[AliOG]

I was wondering what the injections were too. I haven't been given any but I'm pretty glad, tbh. Stuffing down anti biotics and steroids is enough for me. 

Ive spent most of the day in bed dozing. Feels like a bad hangover to me too. I have very little energy and a slight headache. Definitely have 'foggy' brain too which is the most annoying. Just really want to be left alone.

Drinking pints of water which I hope will help. 

Hope you all all get a restful night tonight, ladies xx

[Lynhq27]

Also drink gallons of water as it seems to make a difference

[Lynhq27]

They gave me 7 to come home with. I think it is to encourage bonemarrow to produce white blood cells for immunity but if anyone knows different let us know.  I was horrified. My daughter did the first one, I grabbed a handful of belly and it was like she was practicing for a darts match lol. Second one my sister-in-law watched over me saying if I didn't do it she would and let's just say she is not known for her tender touch so in I went no problem.

I don't know if everyone gets them.

[Carole M]

Thanks for your good wishes ladies.  

Lyn what are the injections for?  

[Lynhq27]

Well done you AliOG
Imagination is not always a good thing. ;0)
Best of luck

[Lynhq27]

Hi Carole M

I did my first FEC-T  12 days ago and went with the cool cap. If you get past the first 10mins it is bearable. I have no hair loss yet (anywhere) but it's early days.

I don't know if I'm just lucky so far and the worst is probably yet to come but the whole thing is nowhere near as bad as I expected it to be. Apart from the general 'hungover' feeling I can even forget there is anything going on.

The self injections scared me but found if I aimed for the old stretch marks I hardle felt it lol.

I am sure we are all tougher than we thought. 

Wishing you wel with the journey.

Lyn  x

[Daffodil54]

Welcome, Carole

Good luck for your treatment.

Hope you feel better soon Jintz.

Hugs to all.

[Jintz]

Hi AliOG,
Thanks for the well wishes. If you try to eat good stuff hopefully you won't put on too much weight. My stomach doesn't allow anything to stay in long enough to put on but I spoke that's not a bad thing ! All the best x

[Jintz]

Good luck Carol. All the best

[Carole M]

Hi ladies

im a bit late to this group, but starting FEC-T for 6 cycles on Friday 30 June.  I've had mx, reconstruction with expander (pretty uncomfortable) and ANC?  

Still can't quite commit to cold cap, but wI'll probably give it a go.  

[AliOG]

Morning, Jintz. So sorry to hear you've been in hospital but good to know you're getting good care. Any ideas where you picked it up? Was it the good old temperature taking that alerted you? Really hope you start to feel better soon. 

Abulafia, you're son does indeed sound like a sweetheart. Kids are always more resilient than we give them credit for, I think. My daughter was positively full of beans when I returned from hospital yesterday. Think she'd been imagining the worst too. She even volunteered to make her own packed lunch for the morning!! I ended up going to be before her last night. That anti sickness pill turned me into a zombie almost straight away. Hoping I don't have to take another. 

Chilling in bed this morning and trying to get over the feeling that I am going to look like a whale by the time this is all over. I managed to gain 4 lbs in a day yesterday despite eating very little! 

By the way, is anyone else in our group on EC only?

[Jintz]

Abulafia,

Your son sounds like a honey ! That's the attitude you need around you all the time.
I've been in hospital for the past 2 days due to infection. They've been so good to me and family and all rallied round. Feel very blessed.
Hope everyone has a good week.
Round 2 starts on Monday x

[Abulafia]

All best wishes Velvet.

AliOG, so glad you remained on schedule.

I have had an awful time with my picc line plaster this week. I think they must have put a different type in. Nothing wring with the picc line itself, just the plaster.

I had my husband clipper my hair today, what little there was left of it. I feel weird, and understand why so many women find hair loss so traumatic.

My son said..mum..you are still you.. gave me a hug.. that was nice...

Thinking of all you lovely ladies, and see this forum as a lovely safe space to chat with people who just...get..it..

Hope everyone gets a,good night's sleep. xx

[Daffodil54]

Well done, AliOG. Hope you feel fine over next few days.

I had my picc line inserted today. My vein went into spasm so after a lot of waiting for it to relax, the line had to resited higher up, so a bit longer and more complicated than expected. So a bit painful tonight. I am sure it will be worth it though.

One week till second treatment. Throat pain much reduced. Hoping for a good week.

Hugs to all.

[Tripletmum]

Great work AliOG - one down already xxxx

[Jintz]

Sorry meant good luck !

[Jintz]

Well done girl and hood luck !!

[AliOG]

Hi everyone,

I'm back from session one and it wasn't as bad as I'd imagined at all. My imagination can be a bit - ahem - over dramatic at times, shall we say!

I'm tired and a bit spaced out but that's about it. I've taken an anti sickness pill as a precaution but doing ok on that front. Whatever drugs they've pumped into me seems to have sorted my back out - every cloud etc etc.

I tried the cold cap and stuck with it. The first 15 minutes was unpleasant but I pulled through it with the help of meditation and a husband on stop watch duty. 

Feel like I'm going to be endlessly monitoring for side effects now but need to try and think about other stuff too. Going for a bit of rubbish TV to compensate!

Hugs to you all. One step closer, eh? 

[Skells]

Hi, I think drinking lots of water today and tomorrow should help. All the best for tomorrow. I hope your side effects aren't too bad xxx

[Velvet]

Hi all,

Well I had my long hair cut short on Friday (only a couple of tears as I left) and have just got back from seeing my oncologist to sign the consent form ready for my first FEC-T chemo tomorrow.  It's all very real now.

I know there were a few ladies due to start chemo today and just wanted to say that I hope everything goes well for you all. 

Everyone shares such a lot of information on this forum and, as well as being realy useful, it makes me feel like I'm not the only one making this journey.  So if any ladies further along have any very last minute advice it would be much appreciated? 

Thanks all

Velvet x

[Anniej]

Hi ladies, just dipping in here. Read about PICC line cover issues. Just to let you know you are not alone. There is a whole thread on it on here. I think it's the general Chemotherapy thread. Anyway, there are lots of suggestions and help there, including one lady who has started making her own. Good hunting. X

[Abulafia]

Ali0G, I am sorry to hear of your health issues. All best for this week.

The smoothie recipe sounds good. I might make and adapt to fruits in the garden.

I biked 7 miles today along the seafront at Boscombe (day 16 - FEC T), and walked a mile. I am now exhausted, but happy.

Listening to children playing, the waves crashing, the water glistening, and feeling the breeze on my face was wonderful.

As a reward, I ate cake. Orange and poppy seed...lovely.

Had to go back on nistatyn, as candida back with a vengeance.

I am guessing this will be a continuing issue for me as oncologist prescribed for next Saturday. Not fun, but manageable with medication.

Off to sleep a bit.

[AliOG]

Hello ladies,

Spent 2 hours at hospital having ore assessment. Appointment for first EC is tomorrow at 12.30. On top of the tonsillitis, I now have a very sore mouth from the antibiotics and a torn muscle in my back from sleeping upright to avoid coughing. Trying hard to stay positive about tomorrow but with all these additional ailments, it's really hard!

Lovely to hear your plans of bike rides, weddings and visits from friends. I think I've got it in my head that I'm going to be housebound for 5 months with my head stuck down a toilet. Have to keep reminding myself that it probably won't be as bad as I'm imagining. 

Hope you've all managed to have a decent weekend. Hugs to you all x

[Mishy18]

Ooh def going to be making these sounds lush!! Thanks for recipe! Glad you are doing well on the treatment keep your chin up xx I'm hoping to get a date soon for mine, it's been over a week since onc meeting so not long for me I'm doing the fec T too

[Jo_Carter]

I'm now day 2 since my first FEC-T chemo and have been feeling fine up until now.  I can start to feel myself going a bit downhill.  Aching back and feeling a bit fuzzy in the head. No nausea. Slept well last night.

I've been making a lovely smoothie every day, which may be helping with nausea. If anyone else wants to give it a try, here is the recipe:

1 slice fresh pineapple (include the middle core, as there is lots of goodness in it)

1 slice frozen mango (easier than cutting up a fresh one and makes the smoothie nice and cold)

1 thumb sized piece of ginger (anti-sickness, anti-inflamitory) - peal and cut small

1 thumb small finger piece of turmeric (anti-inflamitory) - peel and cut small

A few grinds of fresh black pepper (this allows your body to absorb the turmeric, otherwise the turmeric gets metabolised too quickly)

1/4 tsp ground cinnamon

1/2 tsp honey (optional)

Almond milk - or other type of milk 

Liquidize into a smoothie.  It's deliciously zingy and really good for you.

Makes about 250ml - enough for 1 large or 2 small smoothies.

If you don't have fresh turmeric and ginger, you can use powdered 1/2 tsp turmeric / 1 tsp ginger.

It's adapted from this http://www.spinach4breakfast.com/turmeric-and-ginger-smoothie/

Let me know if you try it.

[Abulafia]

Skells, day 14. (I am an injection phobe so think the issue is psychological, but it was hot in the room which didn't help)

My next lot of chemo is next Saturday. So nice to hear from ladies just ahead of me.

My hair is falling out in handfulls at the moment, but enough there to get away without a wig in the trip to the seaside tomorrow. Taking a fold up bike...

I took Zopiclone to sleep at night, and now as and when needed. Love when I can sleep without them. But try not to beat myself up if it gets to 2.00 am and give up and take one. We all need sleep for healing!

I am going to check the online picc line covers for £5.00. There are some great cheap wigs on Amazon for £15.00

I asked friend's opinions from 3 wigs and they picked the cheap one!!

[Jintz]

Hi Triplemum,
Sleep is something I am really battling with too. Wake at about and that's me for the next 2 hours at least. Have decided to not fight it, get up and go read a book until I'm tired. So thankful I don't work.
I have battled to find a pic line cover so will check ebay too.
Take care everyone x

[Tripletmum]

I have been struggling to sleep as well - usually I am an 8hrs per night person so this is crazy new to me. Next chemotherapy is Wednesday so bloods on Monday - its like being stuck in a v v grim episode of Groundhog Day! Main positive is after Wednesday I will be half way through and Wimbledon starts on the tv so lots of men to watch!!!!! Xxx

[Daffodil54]

Hi

Day 12 good. Just terribly sore throat. Been using mouthwash and tried bicarb. Pleased it is cooler. I get my picc line on Monday and have bought two pretty lacey covers from the lovely MacMillan shop at the hospital.

Sounds like everyone is coping well. Keep positive!