May 2017 chemo starters

[treehouse]

MJK oh bless him. Kids are great and it means he has accepted what's going on. My 2 are away and I am guessing I will shave while they are away. I know my hair has been the biggest worry for my youngest. Katie I am ok. Just a dull ache toda. Went shopping this morning. Now snuggled on sofa watching game of thrones marathon with hubby x x

[MJK]

Got out for a play in the park with my son. Good to be 'normal ' although being 4 he feels the need to tell other mums that 'mummy had her hair cut short because it's going to fall out then she'll wear a wig'. 🤔

[katie11]

Oh rosie, must be difficult for your all. Definitely get out and have some fresh air. That's my goal of the day. Still aching but feel like I need to get out just waiting on district nurse for another bloody injection! I feel silly that all I've been through, surgery, results, biopsy, chemo and it's the bloody thing that is suppose to keep me going totally floors me! What's that about lol!

Hope your feeling better today treehouse x

Glad your getting use to your hair Heather. I still stare at myself and can't get use to it. Still got some on top and feel happy for now for that to stay.

Enjoy rest of bank holiday x

[Raitchr]

Forgot to say enjoying the "Wash n go" haircut, saves me 20 mins of hair drying after a shower., actually quicker than my husband. Sad that it is still falling out everywhere and will be gone soon, kind of got used to short hair. Decided when it comes back to kept it in a short style.

[Raitchr]

My hospital goodie bag will have the mouthwash in it this time. I saw oncology on Friday and asked for some for next time. She just asked what side effects I had and she prescribed new meds. Don't suffer on chemo, there are meds out there to try and it takes first cycle to see what s/e you get.

[treehouse]

Hi Rosie
Sorry to hear about your family. I agree our diagnosis can bring out emotions and fear in other family members. My mum had bc 3 times and ovarian but she is only one ( so far) and doing a great job looking after me through this. In fact I got 2 goody bags. I am on different chemo to you guys. Clearly they were expecting me to feel s**t. Lol. Have a good day. We are trying to get the house ready for round 2 tomorrow. Shopping and cleaning. I liked jelly last time.

[Trisha69]

Thanks Heather, my partner just nipped out get me some honey and a fresh lemon.  WIll try anything.

All the best for Thursday, shame bout the weather, Im having  a sofa day today, got appts Tues and Wednesday so want conserve some energy.

Have a lovely picnic.

Trisha

[Mai7]

Rosie, glad you're planning on a bit of picnic escapism, definitely good for the soul! Hopefully, will help with your emotional wellbeing too. I got emotional last night watching the film "La Vie en Rose" Edith Piaf lifestory. I just attracted too much emotion by watching the wrong film! (Great film though). Your goody bag is the same as mine. We are obviously on the skinny-bag hospital trusts!

[Rosie65]

Blimey I'm getting serious goody bag envy. I only get steroids, anti-sickness meds and injections in mine. Although not sick this time the meds left me seriously spaced out. Day 5 for me today and feeling better but highly emotional. Have felt fairly in control of emotions since diagnosis so guess it had to come out sometime.

Have heard that my mum's sister has ovarian cancer (she is elderly and frail so not being treated) So that means that my mum and two sisters have all had ovarian and myself and sister tnbc. Understandably, rest of family stressing re genetic test results. Had tests 5 weeks ago but they said can take up to 8 weeks for results. Counsellor thinks likely it is BRCA1. Mum and sister diagnosed 25 years ago within six months of each other at a very difficult time and cancer not so openly talked about then so lots of buried emotions coming out now across the family.

Oh well feel better for writing that down - hope you all don't mind slightly depressing post!

Plan for today - get hubby to drive to coast for picnic - inspired by you Mai7. Although weather has turned a bit so may have to eat in the car. Enjoy the bank holiday all!

[Raitchr]

Hi I use honey, just the usual type for sore throat, a spoonful and let it gently coat your throat. Also gargle with dissolved aspirin or warm salt water can help. My husband usually drinks OJ in warm water and honey if he has a bad throat but for me during chemo OJ tastes like TCP.

Hope your throat is better soon.

I am enjoying the last few days of wellness before next poisoning Thursday. Shame about the weather today!

Heather

[Trisha69]

Thanks for the tip and good luck wuth the steroids x

[treehouse]

Hi Trish. I was given Difflam oral rinse in my hospital goody bag. It is to relieve mouth and throat pain. I have not used it yet but might be one to ask for. I drank lots of camomile tea with Manuka honey 🍯. Back on the steroids today. X

[Trisha69]

Thanks, have phoned BCN and had a tooth out last Monday and she thinks its more likely connected to that then the Chemo.  May just need more antibiotics.  Have some OJ  but it burns my throat, thank you for your tips x

[WolfEE]

I haven't done this yet because I need to check it out but..... have been told that although we shouldn't drink or take extra vitamin c we can gargle it around our mouth because it can be a great help with sore throats and mouth. So dissolving an effervescent and doing a swish like a mouthwash could help but until I've asked about it don't swollow. This tip was from a lady who was trained as a chemo nurse.

[Trisha69]

Morning,  Its just very scratchy and hurts to swallow, drinking loads of milk, hot drinks hurt it even more.

Trisha

[WolfEE]

Treehouse, gosh I don't know how sometimes I think I miss messages when I'm reading through and catching up but just noticed you were at the hospital yesterday with the shooting pains.
I hope your feeling better and the antibiotics are doing their magic already.
Speedy recovery and I hope not appendix
Xxxxxxxx

[WolfEE]

Morning Trisha, sorry bout the throat. Do you think it's actual sore throat or dry throat? if you have a drink or some ice cream does it ease it for a while? The thing is a sore throat could be the start of an infection (please don't panic it's probably not) but dry uncomfortable throat is sideaffect. It's hard I think knowing what is acceptable (hahahah as if any are acceptable) and what is of concern. I'm hoping as the days pass we will become less paranoid and able to know the differences.
Do you have any hot chicolate or horlicks? I have found that I have gone off coffee (I'm the biggest coffee lover) but I can drink hot chicolate, I try and have one in the morning as it does help my throat. Maybe try a milky drink?
Keep checking your temperature throughout the day. X

[Trisha69]

My throat feels like I have eaten glass 😞  been aboit 30 hours now, temp is ok at 37 degress, but so sore x

Is this normal?

Trisha

[Mai7]

Katie, Treehouse, I think you need a group hug, but won't squeeze too tight if you're achy. 💞

MJK, yes, I feel as if my sanity has been restored by going out and doing normal things. Just simple things you usually take so much for granted.

ive experienced a bit of blandness with taste and I just add cinnamon to granola or spices to savoury dishes etc. I've found the green smoothies hard to drink because of the taste, and I usually love these. 😕

[treehouse]

Thanks ladies. I think I'm ok. I just don't trust my body. Getting a bit paranoid about everything.i expected the side effects but nothing quit prepares you. Hair falling lots but still not noticeable unless you look at my shoulders or pillow. 😝

[MJK]

Hi Trisha, I started on FEC on Wednesday. Finding smells a challenge but so far the injections aren't too bad. Glad you had a good picnic Mai7. Getting out and doing normal stuff helps me feel like a person not just a cancer patient. Hope you're ok treehouse.

[treehouse]

Katie I found sweet things tasted sour. Everything goes a bit wrong with this chemo. It does pass I promise. Visitors help keep your mind off it. X x

[katie11]

Oh treehouse, hope your ok xx

Sounds like you had a lovely weekend Mai7.

Sat in bed with hot water bottle and lemon drink as can't stand taste of anything else at the minute! Oh have times have changed.

[treehouse]

Hi Trish. Glad you found us. Katie dat 4-9 I had pain and like you paracetamol did nothing. I am getting better painkillers for found 2 Tue so will let you know. I had a lovely date night with husband yesterday but have had niggly pain in my right abdomen. I was putting it down to a bruise from my first jab but it moved lower . Today we went for a mooch around a car boot and I was getting stabbing pains so went home. After a few hours decided to call hotline as was getting worried. They told me to see out of hours GP. After many phone calls and a visit to hospital they hope it is not appendix and have given me 3 days antibiotics for mild water infection. Mai you had a much better day than me ☹

[Mai7]

Ive had an awesome 2 days, enjoying the lovely weather. Yesterday's picnic was very relaxing (and the rain stopped by the time we arrived). We received a lovely surprise visit from my Son last night. Today we went out walking in the countryside and then had a juice drink in the beer garden of a lovely country pub. Aah, my bubble is filled with idealism, let nothing burst it!

Trisha, welcome to our lovely group.

Katie, sorry to hear your are suffering with aches. I must admit, I've had aches today behind my left knee, in my lower back and left arm. They're not severe but noticeably crotchety. I don't know if it's chemo side effects or those injections (did my last of 7 today so none until next round). I've read Loratadine may help with bone pain so may be worth a try. It's an off-the-shelf antihistamine and cheap if you buy the stores owned brand. My Onc confirmed its ok to take with FEC but you may want to ring and check with yours. Btw, we took some ginger beer today but will be stalking those alcohol-free G&Ts like a mad-woman!

Raitchr, well done for braving the shave!

[katie11]

Welcome Trisha, hope you will find this as helpful as theasy rest of us x

I'm really struggling with these daily injections today. (Day 4) . Really aching. Under Arms, hips, every where. Any tips? Parcetamol not really helping. Know you suffered quite bad last time treehouse . Did it just ease when you stopped the injections? X

Hope you have all had nice weekend ladies

[Trisha69]

Hi, no wierd smells yet but anything I eat tastes bland. Been drinking lots of milk to try ease sore throat and bought some ice lollies.
Keep in touch Trisha

[Trisha69]

Hi there,  My Oncologist has just said to keep taking the B12 etc and is on a repeat prescription for me.  The day they checked my bloods at the hospital I got a call from my local Doctors secretary to say my Folates were low and a prescription had been written out for me for folic acid.  Was a bit miffed because that blood test with the Doc was taken weeks ago and took him all that time to get in contact!  Maybe if he had been more on the ball my chemo wouldnt have been delayed.

How are you feeling?

Trisha

[WolfEE]

Trisha I had a B12 injection. I was low picked out on a blood test prior my diagnosis. It must have been ok as it hasn't been mentioned since?? So they check b12 each cycle?

[WolfEE]

Hi Trisha, welcome to our group we I hope we can stop you feeling so lonely there is normally one of us on line at most points during the day / night. Glad your coping fairly well with your first session I am just a couple of days ahead of you I starterd last Monday (a week tomorrow) I like you am relieved that I have been lucky not suffering sickness however I am struggling with smells even lovely smells like fabric softener or my sister sitting near me after a shower with bee creams on are making me feel uneasy. I can constantly smell a kind of burnt toast smell around the house - wondering if anyone else has experienced this? Is this a normal side affect?
Regarding the wig (bit of a toutchy subject for me at the moment 😖 So I will let one of our other lovely ladies give you some advice on that, as they did me and I am starting to feel better about it now) I will be having my final fitting on Monday 5th and at the same time I will be having my hair shaves so that I come out of the fitting wearing the wig and will not have to experience the actual hair loss.
Xxxxxxxxx

[Trisha69]

Hello everyone,

Silly me used a different  thread, thanks for the tip to join this one!

My 1st Chemo was due 15th but blood levels were all over the shot and been taking Vitamin B12., Folic Acid and Thiamine Hydrochloride.  Platelets went from 70 to 160 in 10 days so I started last Thursday after having a Picc Line fitted.  Taken all the anti sickness drugs they sent me home with and so far not had to take the Metoclopramide, dont feel sick but have a very sore throat and no temperature.  I have a prescription for Omperazole(Gastro resistant capsules) so hoping will have that by Wednesday to help relieve the burning feeling.

Going with a friend to Force at Exeter hospital on Wednesday for a wig fitting. Very nervous, had 6 inches chopped off about 3 weeks ago but the BCN thinks need go shorter still so its not such a shock.

Any tips and chats would be most welcome, I have a partner but my kids live miles away and feeling a bit lonely.

Trisha

[Rosie65]

Hi Annemay Well done on the haircut. Mine still shedding but also lots still there! Can understand now how annoying it is and eventually easier to get it cut.

Im going on to Paclitaxol after EC for four treatments. Are you seeing the oncologist soon? He/she may be able to give you more answers? The paranoia with all this is the worst and it's so easy to overthink every thing that's said. Sounds from your earlier post that you had tolerated it well and good to hear no nausea

Keep strong and keep talking!!

[Anneemay]

Thanks for the welcome, I also had a big decision earlier this week as to whether to have my hair cut as it had started to get a bit tatty around the edges. I hadn't got a lot but it had got thinner from previous treatments. I went for it and glad I did rather than wait for it to fall out. I also treated myself to a couple of hats from a well known store which were in the children's department and fitted well.

Bloods checked yesterday and whilst there asked the nurse if she knew about my treatment plan. She said that it was indefinite or depended on how I tolerated SE. Feeling a bit anxious this morning after I have thought about this, does this mean I will be on this treatment forever as there is no alternative. I have had 2 different oral chemotherapy's and was unable to tolerate them and Tamoxifen failed. Ann

[misyangel]

Well done Heather it does feel a relief in a strange way, although I can't get used to a cold head lol.

I am due to start next round on Friday and since Wednesday this week have had a headache every day at the same time and lasts for few hours.  Loath to take tablets as prior to this I rarley took tablets and feel like my body is overloaded with them. I was rarely ill prior to this, certainly making up for it now.

MJK, Treehouse I think the injecting is the worse part, I have always had a needle phobia and my husband said I will get used to .  I don't think I will ever get used to it.  To be honest I am already feeling the anxiety to have the canular put in on Friday.

My sister had said to me I bet you sometimes forget to put your headscarf on when someone knocks on the door. I was like you never forget you have no hair,  fast forward two days in the house the door goes, I go to door didn't put my headscarf on as I forgot whoops and it was cancer reasearch lol.

[katie11]

Well done Heather. It's a relief in a weird way isn't it!

Picnic sounds lovely Mai7. Just a shame you couldn't find gin and tonics to go with it. They were a pack of 4 in the seasonal bit rather than with drinks and alcohol.

Managed to take Dog out and been to Asda. Couldn't decide what to eat for lunch. I seem to be needing to eat like when I have a hangover. So had a pasta salad. Will try and have a nap after nurse has been. Hubby taken boys out for a few hours x

[Raitchr]

I put off having hair cut before, was 4 weeks over due for chop and thought it would fall out days after 1st chemo so was reluctant to pay for a cut before. I thought you can't dye your hair when having chemo or for 6 months after?

[Raitchr]

I had grade 7 all over and then graduated at the back, it's a bit spiky but it doesn't hurt anymore. Feels weird outside in the breeze! So glad I did it and the roots aren't as bad as I thought, I did have a few (many) sparkly silver hairs mixed in with the normal brown, was worried it would look salt n pepper! I don't usually colour my hair so did think it would look strange but seeing as it will fall out after next chemo if not before then I am not bothered!

[treehouse]

Well done with the hair. I am still not ready 😡 hanging on for a bit longer. How short have you gone? I had a short cut at at Easter but it needs a colour and a trim again...i just don't see the point.

[MJK]

Well done Heather. X

[Raitchr]

I've done it, had my hair chopped off and it feels great!

Heather

[MJK]

Multi-tasking isn't my strong point at the moment either! There's nothing soft about not wanting to stick needles in yourself Rosie and Katie. I've taught children with epipens so it doesn't phase me as much, not fun though. I hope it dries up for your picnic Mai7.

[treehouse]

Not sure where you all are but I am in the west midlands. Rain passed here at 5am. Glorious sunshine now. Its coming your way 😁

[treehouse]

MJK well done you. I also inject for 7 days and can honestly say it is the worst part of the treatment for me. IHATE doing them and now I know that is what caused my pain I hate them even more.

Hang in there Katie I got low days . Go with it. Be lazy. Have treats. Let people look after you.

I was walking to the hospital with my husband yesterday and I couldn't keep up. I am just slower at the moment and I told him I was already doing 3 things , walking , talking and busy fighting cancer.
I remember saying the same when pregnant ( busy making a baby).

[Mai7]

MJK, Pilates would be much nicer, I agree. I never read the box as I'm in such an automated frame of mind when I inject but mine are the same as yours. I found the first round the hardest to stab myself but this time I just stick it in and don't feel a thing, like my brain has switched off from it. So......it does get easier the more you do it.

Katie, keep your chin up chick. We're on our way to have a picnic and it's RAINING! Really didn't want soggy sandwiches! We looked for the alcohol free G+T this morning in a local coop but no stock. Maybe need a bigger coop needed. X

[katie11]

I'm on the same one as you MJK although I have the district nurse come to do mine. I just can't bring myself to inject it! Soft I know! I felt quite rubbish off them last time so see how I go this time . Day 3.

Feeling in a bit of a low mood today like I don't want to do anything. Thinking it could be the steriods? Anyone else been like this x

And where is the sun! Just typical when the kids have finished for half term x

[MJK]

I'm on 7 days filgrastim injections (fortunately I'm not squeamish). Pilates is much nicer Mai7! Haven't had side effects but took the ibuprofen to help. Off steroids today so hoping to get more sleep tonight 😴. Hope you all get some pampering today. X

[Rosie65]

Yes well done MJK. My sister does mine, she is a nurse though and if she comes straight from work she quite looks the part ha ha

How many have you got? I didn't get any side effectsat all until the sixth injection and just took paracetamol and the aches/pains cleared up.

[Anniej]

MJK, are you talking about doing your injections? If so, good girl you! I still haven't got my head around sticking needles into my belly. And I know it doesn't hurt. 😟 Just see the needle bit and have to sit down. I was never needle phobic before all this. X

[Anniej]

Ah, Treehouse, but don't forget they gave me THE new anti nausea super drug , Akaynzo, which made me so ill I was more or less out of it for three hours!😱 Perhaps that's how it works , you just sleep through it? You stick with the Emend. Just had some porrage. Hoping it stays down........X

[Mai7]

Treehouse, I'm having goody bag envy. I may have to ask for Omeprzole to be added in future at this rate. Glad you managed to log back in for your extra support - this group is better than a good bra for support!